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Mary Shomon

Levoxyl Shortage Affecting Thyroid Patients

By March 31, 2013

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Apparently, manufacturer Pfizer has had some sort of difficulties with production, resulting in a shortage of Levoxyl, a brand of levothyroxine sodium, used for thyroid hormone replacement treatment in hypothyroidism. According to a letter sent to physicians by Pfizer, the company stopped shipping all strengths of Levoxyl on February 13, 2013. They have said that they will resume shipment once the issue is resolved, but they have not indicated when that will take place. (If you have medically-related questions regarding Levoxyl, call Pfizer Medical Information at 1-800-438-1985.)

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Comments
March 31, 2013 at 6:09 pm
(1) Raja Mary says:

The Levothyroid brand name was pulled off the shelves last fall. There was a problem with the pills crystal/breaking down(?). It has yet to be manufactured.

March 31, 2013 at 6:41 pm
(2) Kris says:

I’m tired of these companies that have long shortages of thyroid medication… The larger companies do their best to smash small competitors like the manufacturers of Armor, then people switch over & then they have these long interruptions in manufacturing. Why do I NEVER experience this with any other medications I take? It’s only thyroid, the one my life depends on…

March 31, 2013 at 6:54 pm
(3) Lisab says:

I feel so much better when I take the levoxyl and not the generic. I now have to go back feeling horrible. Does Anyone know if any of the other thyroid meds have same chemical makeup? Besides the generics. I am allergic to iodine and mercury and seem to have less issues with the real levoxyl.

March 31, 2013 at 7:41 pm
(4) Clowng says:

Im very happy with Mylan. What I switched to after being previous brand ran out of pills for quite some time. I actually feel MUCH better.
It was a blessing for me, that they ran out.

March 31, 2013 at 7:45 pm
(5) Pamela W. says:

I just had my Rx refilled last week, no problems. I hope my pharmacy has enough in stock for me until this is resolved. I can’t take the generic of Levoxyl. So frustrating when you find something that half way works and then they throw another wrench into your well being.

March 31, 2013 at 7:53 pm
(6) Karen T. says:

I take Levothyroxine, would this affect this as well?

March 31, 2013 at 8:40 pm
(7) Jan Adrienne says:

I have been taking Synthroid for almost 40 years and have never had any trouble with shortages, etc. I cannot take levothyroxine as a generic. It does not work. Levoxyl works in case the pharmacy I have to go to to get my meds does not carry the Synthroid brand.

March 31, 2013 at 8:54 pm
(8) Linda says:

UNBELIEVABLE!!!!! I am on Armour–my compounding pharmacy makes it for me –the “old” Armour–so this doesn’t affect me too much–EXCEPT to make me angry. WHY, WHY, WHY does this happen with the thyroid drugs????? Everyone gets so sick when this is pulled—wth is going on here? I was sick for a year and a half when –whoever–did this with the Armour. WHY is this happening–any one know? I mean, for real….? Noone seems to give straight answers when this happens. Nothing like messing with people’s lives….. I had to stop my job the last time this happened to me because I was so ill…..and I went on sick leave for only 7 days until I could get my drug made, BUT I worked for almost a year and a half totally sick. It affected my heart and everything else……
I am so sorry for you guys that are going through this!!

March 31, 2013 at 9:02 pm
(9) anita says:

I noticed that my 50 Levoxyl that I recently had filled, the pills were thinner and felt different. I had some left from my previous prescription and took it to the pharmacist. He said apparently they changed the size because he had a bottle of 50 Levoxyl. i also called the mfg. and was told that they recently got the new formula approved in the USA (this year) and added two new fillers (sodium bicarbonate and calcium sulfate) and that’s why they look and feel different. I asked her what country they came from and she would not say. I would like to know what is really going on???

March 31, 2013 at 9:04 pm
(10) Ed Arnold says:

I started using Levoxyl when I discovered that King Pharmaceuticals (late bought by Pfizer) was willing to issue a letter that Levoxyl is completely free of gluten. This is a Big Deal for me, because the maker of Synthroid will not declare that it is free of gluten. And, most of the generics are questionable, the generic makers don’t know what’s in their pills or even where they come from.

April 1, 2013 at 2:13 am
(11) Jackie says:

Iodine is an essential element found in every cell of your body, so it is likely that a person having an “allergic” reaction is actually detoxing. Read David Brownstein’s book, “Iodine, Why you Need it, why you can’t live without it.”.

April 1, 2013 at 2:57 am
(12) Mary D says:

It fustrates me to no end. I used to take Thyrolar but it was taken off the market like 4 times and 9 months to a year at a time. I have no thyroid because I can’t have gluten. Synthroid is too wishy washy on whether they are gluten free. I bought up all of the Levoxyl I could find and got my doctor to give me a.prescription for a compounding pharmacy. I don’t understand why thyroid drugs patients are screwed around with so much.

April 1, 2013 at 3:18 am
(13) annie says:

for lisab — are you allergic to iodine itself or to shellfish — there is a difference. the iodine in shellfish is NOT the same form of iodine as in iodoral.

for everyone — if ya’ll have compound pharmacists in your area, please consider going there to have your thyroid medications compounded. that way one can better control the fillers — synthroid and levoxyl are the same – the differences are in the fillers.

April 1, 2013 at 7:00 am
(14) Amy Rose says:

My husband works for a fire department and is in charge of keeping the medication supplied for the ambulances. They have been warned by the regional hospital of major drug shortages coming, including pre-made IV bags with saline solution.So it’s not just thyroid medication. There are other critical meds being messed with for heart patients and diabetics as well. They were told that the FDA has been making demands on manufacturers, who are having to change their production, thus causing shortages. So we can thank our government and the economy for the resulting illness and deaths that will result from this. Stay healthy friends–and accident free.

April 1, 2013 at 9:05 am
(15) Sandy says:

This is one reason why so manyAmericans get their prescriptions through Canadian pharmacies. I get my Synthroid from Big Mountain Drugs in Canada. Have had no issues whatsoever and it is cheaper than if I purchased it through my insurance.

April 1, 2013 at 9:17 am
(16) Leslie says:

May I recommend you try Tirosint, which is relatively new to the thyroid supplement range of options, and is supposed to be the purest form? I have been taking 75 mgs, for about 9 months now, and have had no adverse side effects, as I did with Synthroid, due to the fillers used in their manufacturing process. Tirosint is manufactured in Switzerland and was fortunately approved by the FDA within the past 5 years or so.

April 1, 2013 at 10:58 am
(17) Shannon says:

I take 125 mcg of Levoxyl and I did not have any problems filling my prescription last week. It was filled promptly as used.

April 1, 2013 at 11:10 am
(18) Letha says:

I went through this same problem years ago with Armor Thyroid shortage. I switched to compounded medication for a few yrs until a friend recommended I see a naturopath. It was the best decision I ever made. I am off of ALL prescription medication and now treat my Hashimoto’s with vitamins. I haven’t felt this good in a long time. This isn’t necessarily a cheap route to go, but it is definitely worth having quality of life back!

April 1, 2013 at 12:20 pm
(19) Nancy R says:

I have only taken BRANDED Synthroid. I don’t allow generic substitution and pay cash for my prescription because often the cash paying price is cheaper than my co-pay. There are coupons available for Synthroid $10.00 coupon (90 Day supply). FYI

April 1, 2013 at 3:47 pm
(20) jill says:

hi leatha
do you mind me asking who your doc is?

RE: Levoxyl Shortage: I switched drugs during the armour/naturethroid shortages to ERFA manufactured in Canada & available through canadian pharmacies (I use United Pharmacy).
ERFA is very similar to the old Armour/Naturethroid & gluten free.
You just need to have your doc fax your prescription to them or call.
Saved my life.

April 1, 2013 at 7:15 pm
(21) Sharyl says:

I had problems filling my Levoxyl last week. My regular pharmacy had to send my prescription to a different pharmacy (within the same company). My regular pharmacy explained to me that they were unable to get Levoxyl in, that it was on “backorder”, and that the problem was with the manufacturer. When I went to pick up my Levoxyl from the other pharmacy, I was telling them the reason that my prescription was sent over, and they hadn’t heard of any shortage.

I get my Levoxyl in a 90 day supply, so hopefully Pfizer gets it straightened out by the time I need more.

I’ve never been on anything other than Levoxyl, and I’m sure not looking forward to having to switch and basically start all over again with the blood tests every 4-6 weeks and possibly feeling like crap. :-(

April 2, 2013 at 1:01 am
(22) Kristy T says:

When I was first put on medication I was put on Levothyroxine by King Pharm. did ok on it, but was nervous to stay on a generic because of potentcy and consistency. So requested a brand name, was put on Synthyroid and did horribly on it! My number went up again and were even higher than when I was diagnosed, so it was as if I wasn’t even on medication at all. Went on Levoxyl and have been on it ever since. About a month ago I filled my prescription and didn’t have any problems. But I am now nervous in a couple months I may run into them. I really really don’t want to have to find a new brand, I am so afraid to have a another experience of going backwards again and feeling crummy. Fought 4 years to get on thyroid medication as it was and it makes me sad to think I may have another hill to climb. If it does run out I may looking into ordering ERFA from Canada.

April 2, 2013 at 11:15 am
(23) Paula Delaney says:

Just called Pfzier and they stated Levoxyl will not be available till mid 2014.

April 2, 2013 at 3:41 pm
(24) Tina says:

Letha, I would love to hear more about the natural method you use. I was diagnosed with Hashimoto’s over a year ago. As I didn’t want to succumb to taking medication for the rest of my life, I tried the natural route first. However, building up my thyroid, just made me sicker. My TSH went way up in a matter of months. I finally gave up and tried meds. I am on generic synthroid and my dosage still changes every 3 months; some up, some down. Overall, I am feeling better than a year ago, but I would love to end the roller coaster ride. Should I be trying a name brand? Seems so confusing… and if I find one that works, how long will it be around?

April 2, 2013 at 5:47 pm
(25) mia says:

I have a Huge problem with this!! I was on Levothyroid prior for 20 yrs as I had my thyroid removed due to pre-cancer tumor and it worked great, prior to that I was on synthyroid and it didn’t work at all for my body! It was like I wasn’t even taking it yet I was, my body just wasn’t absorbing it so they moved me to levothyroid and then they recalled it and no longer make it as of a few months ago and so I was put on this Levoxyl and my levels have not been normal yet… but getting there… now I am told they don’t have this either and Only option is the synthryoid that Does NOT work for me!! What do we as patients do that have NO OPTIONS??? PER drug company’s 800# they will NOT even have this back on market till Spring of 2014!!! I will be dead by then without thyroid medication!!! My endocrine is useless on what to do about the medication as she didn’t know me back when I had my surgeries and trying to get levels right and being so sick!! I can’t ho through that again as now I have non hodgekins lymphoma and my immune system is so weak already!! I am exhausted with dealing with that and trying to get my levels back to normal again and now they throw this in the mix!!
What can we as patients do to protect ourselves???

April 3, 2013 at 3:47 pm
(26) Jeanne Marie Guadagnoli says:

For several months, my TSH, T3, and Free T4 were “stable” while taking 112 mcg of Levoxyl. In November, my levels began to rise/fall. I wonder if the medication was being affected because of the “oxygen absorbing canister” was shipped in/what it was shipped with. I was surprised today when returning to the pharmacy for my refill and the pharm tech told me my meds were recalled but couldn’t tell me why. I wonder why my doc’s office haven’t contacted me, or my pharmacy, before me trying to get my refill. Wondering if there is some sort of database I can track myself to be notified for any/all of the medications I take. This sucks!

April 4, 2013 at 1:14 pm
(27) Karen says:

I agree that this is a total inconvenience. To be without our thyroid medication is not an option. We depend on it daily to function. I knew when Pfizer took over Levoxyl we were in for a ride and here we go.

I have to now switch to another T4 drug and Synthroid is not an option for me. There leaves a couple of options but…..the scary part is change when your used to taking a certain T4 drug and doing OK.

This sucks.

Thanks Pfizer!

April 4, 2013 at 4:14 pm
(28) Doug says:

If you can’t get Levoxyl have your doctor switch you to Synthroid. It is as good and is not an inconsistent generic. I’ve been on it a week and Imfeel fine. And the doctor enrolled me in a program called Synthroid Direct and I am paying just under $20.

April 4, 2013 at 5:17 pm
(29) Katrina says:

I was at my dr for a checkup today for my thyroid. Pharmacy rep was in the office at the same time and was leaving samples of Tirosint because she said Levoxyl will not be available. I have taken Levoxyl for 14 years without an issue. Lets see how this goes.

April 5, 2013 at 11:05 am
(30) Marie says:

I am on 150mg Levoxyl – was taken off the generic sometime ago because it just wasn’t working and it made me feel like not-the-best all the time. For whatever the reason (maybe the binders used?) thyroid generics just don’t seem to perform as well.

Because of this Levoxyl issue, my endo gave me a script for Synthroid 150mg to start once I finish my Levoxyl prescription. She said – and I also researched online – that it is comparable in function to Levoxyl 150mg. I have a month left of the Levoxy, so we shall see in May if this is true.

April 5, 2013 at 3:32 pm
(31) Jen says:

I am SO disappointed about this!! I was just switched to Levoxyl from Synthroid last month!!! Synthroid was horrible for me! Being on Levoxyl for just a month I have seen a huge difference. I was starting to feel like myself! Now what?!?! My Dr is putting me on the generic which I am so scared of! My hair loss had just started to stop and here we go again. Also, I think I may be pregnant and I know that they usually want you on a brand name. Ughhhh I’m so scared! :(

April 7, 2013 at 2:55 pm
(32) A says:

Shouldn’t Pfizer pay for all of the extra doctor appointments necessary to check blood levels due to a forced change in medication? Who else makes quick-dissolve levothyroxine like Levoxyl? I have (had) taken this for 13 years with few problems (if any).

April 8, 2013 at 8:45 am
(33) Carol says:

Omg’sh!! This explains a lot! I haven’t been feeling like I should and couldn’t explain why. You know those usual feelings when your dose is not correct?? Vision problems, unexplained weight gain, nightmares, very dry skin & hair, not able to focus… All those “low thyroid” symptoms!! Geez -I don’t understand why drug makers are allowed to change an established formula?????!!!!!! We all know what works for us & most of us know the generic doesn’t work as well as the real stuff. So if the levoxyl formula is changed, then the “delivery” and “absorption” rate could change (more like generic), all for the sake of the “almighty dollar”. GEEz!!!!! Might have to go through another 6 months to a year to get my dose correct…maybe I should switch to synthroid?? NOT HAPPY!!!

April 8, 2013 at 9:37 am
(34) Debbie Hope says:

So glad to have finally found this e-chat on Levoxyl.

I have been on Levoxyl for over 10 years and just had to switch to the Levothroxine (sp?) because the pharmacy couldn’t get the Levoxyl. I cannot tolerate the Levothyroxine – it makes my mind race, makes me very anxious and I cannot sleep ONE WINK when I take it – I started cutting it in half thinking this may help, but it doesn’t. SO i stopped taking anything until I can get this resolved. I plan on contacting my doctor today to see about switching to Synthroid……now I have to start this all over again….to get the right dosage.

Pfizer…….please resolved your issues so we can all get back on track and start feeling good again…….

April 8, 2013 at 3:25 pm
(35) mokie morning says:

I was taking levo but it gave me migrains and they witched me snythroid. That seemed ok, till they told me they will only pay for the generic and levo was it. My docotor could have written the insurance company and told them I was allergic to it and they would have given it to me already paid for.My docs faultered and I am out three thousand that I have had to pay for it on my own.

April 8, 2013 at 5:45 pm
(36) BeeTee says:

I am so upset about this. We *just* found the right dose for me in October and my hair is finally starting to fill in where it had thinned for 1.5 years. Levoxyl worked better for me than anything.

My pharmacy has 60 pills of my dosage left. I don’t know if I should try to get them to tide me over or if I should ask to switch to Tirosint, which I have been researching and seems like a good option. My dosage wasn’t affected by the recall, but is being affected by Pfizer not shipping ANY of the dosages.

Not going to lie–I have cried about this since I found out about the recall because I am afraid my hair loss will resume. I see my endo this week.

April 9, 2013 at 8:08 pm
(37) Dawn says:

Just tried to refill today and found about the shortage. Have no idea what to change to. Have been taking levoxyl for 10 years and am terrified about changing and going thru the entire process again. My doctor only recommended the generic Levothyroxine or Synthroid, but based on above information I am concerned about taking either of them. And then throw into the mix my insurance company charges four times the amount for Synthroid.

April 10, 2013 at 4:26 pm
(38) Debbie says:

I called in to fill my prescription of Levoxyl and was told it would be filled only to get an email the next day that it was out of stock! Frustrated in reading the comments that if the drug was going to be pulled or have a shortage reported in February, why did the pharmacy & the doctors office not let us know. I have been on Levoxyl for 6 yrs due to cancer. The first 1 1/2 years I was given the generic version and felt like crap (migraines, joint pain, tired, & angry, etc) & my levels were totally out of balance. My pitutary gland almost shut down because of the different levels I have been on. I have been very tired and started having joint pain again. Now I will try Synthroid and if this doesn’t work I may try the compound med route. I do not want to be in the funk of feeling awful again as I am sure you all do not. I want my thyroid back!

April 11, 2013 at 9:33 pm
(39) Nance W says:

I just discovered this shortage tonight. I am horrified since I just spent 4 years getting my levels reset. 4 years! 20lbs of weight and stress and I had finally sorted it out. I am sick when I use generic.

I will be going to synthroid if my doctor writes it out.

April 12, 2013 at 8:13 am
(40) Lynda says:

For any of you who have filled your Levoxyl script recently….take the cap off your bottle an take a whiff. The reason for the now “pharmacy recall” is an “unidentifiable odor. I don’t know about you, but I’m am sure not taking any more of these not knowing what the actual problem is. I had tried Synthroid prior to Levoxy and had trouble with the dyes in it, but after doing some research I found the 50′s don’t have any dyes on the coating so I am now taking two 50′s and seem to be OK with it. Might help some of you who don’t tolerate Synthroid so well.

April 14, 2013 at 10:28 am
(41) Pamela says:

Iodine Allergy:

I also am allergic to Iodine and a very commonly used preservative (related to Iodine) called Povidone & Crosspovidone. These are found in many prescription medications, vitamins and over the counter medications. It will be listed in the Inert or Inactive Ingredients. Levoyyl contained no Povidone (Synthroid does) so now I have to carefully search for an alternative that will work for me.

If you are allergic to Iodine you might possibly also be sensitive to Povidone. You can be tested for this allergy, as I was. There are many versions of Povidone and was advised by my Doctor to avoid them all.

I’m really upset about this!

April 15, 2013 at 11:29 am
(42) susan says:

I did research on ALL 8 manufacturers of levothyroxine sodium (info from the NIH med website http://dailymed.nlm.nih.gov ) and what additional ingredients were in them (I seemed to be allergic to all but Levoxyl). All have dyes, except for 50 mg. size. Tirosint only has gelatin (gel cap) and glycerine and water. Here are the ingredients for others – (not all have all these things the ingredients, but Synthroid one of the worst. Levoxyl only had the first three and was one of the best (other than Tirosint). No wonder people have reactions!

Cellulose, Microcrystalline
crosscarmellose sodium
Magnesium Stearate
acacia
potato starch
corn starch
sucrose
Lactose
povidone
*crospovidone
aluminum oxide
Dibasic calcium phosphate dihydrate
talc
butylated hydroxanisole
Silicon Dioxide
mannitol
sodium lauryl sulfate

April 15, 2013 at 12:04 pm
(43) Janet says:

Just tried to refill my Levoxyl 150mcg prescription. Was told it had been recalled. No warning! Just a question by the technician. “What do you want now” REALLY?? How can they just stop like that. I’ve been taking levoxyl for over 13 years. Now I’m going on Synthroid. Lord help me!

April 15, 2013 at 8:17 pm
(44) c.r. says:

i was diagnosed with autoimmune hashimotos in the early 90s i was placed on synthroid and did horrible it raced my heart all day and night i ended up with a multi-nodule goiter in my neck and had to have surgery they removed the goiter and half my thyroid and para-thyroid i was switched to levoxyl 88mcg and have had stable tsh levels for 20 years im so scared to try something different as i have irregular hearbeats there was a recall something about a strong odor my pharmacist said my meds were not affected they are holding 60 pills for me but then what? any time you use a generic the inactive ingredients are usually different my body is used to this med after 20 years i cannot believe this wont be available until spring 2014 i dont know what im going to do

April 16, 2013 at 6:40 pm
(45) Phil says:

I’ve been on Levoxyl 175 for 13 years. My Endo always specified “No Substitutions” on the prescriptions. I requested a refill when I was down to 10 doses left, as usual. 5 days later I followed up with my script mail service and was told an order was shipped. 4 more days….nothing. I called and was told it’s on backorder. I then called all local Pharmacies looking for a supply, and was told of the recall. Today was my last dose. My Endo had renewed my prescription on 4/5 and never mentioned a shortage nor suggested a substitute. I emailed her 2 times today for an explanation and resolution, with no reply. I then began to research this issue and came across this site and can’t believe that my MD was likely aware of the impending shortage and failed to address it with me….even approved a refill on 4/5!!! So now, no medication, no substitute, no guidance, no plan.

April 16, 2013 at 7:02 pm
(46) Sophia says:

I was diagnosed with Graves disease and after radioactive iodine was started on Synthroid. It was horrible for me. I went through 4 Endocrinologists (some of them telling me my symptoms were all in my head) until I found one who told me I was probably having a reaction to an additive in Synthroid. I feel that doctor saved my life. I was placed on Levoxyl, brand only. I felt so much better! No more strange muscle cramping. That was 4 years ago and now I was just told about the Levoxyl being on backorder, and I am just bummed. What to do? Switch to generic? I’m so afraid of being severely hypothyroid like I was post iodine. I almost couldn’t walk, could barely comb my hair, and now there is the potential for an issue with the inconsistency of the generics. I don’t know what to do…

April 16, 2013 at 10:03 pm
(47) lsmom says:

Back to research again to find something that will work, I cannot take generic i literally cannot get out of bed, this last bout i was down for almost week, these drug companies should assume responsibility for how the drugs that they produce affect peoples lives, please don’t get me wrong i am very thankful for them saving my life, but they bare a huge responsibility when they take on a population to supply a drug that people depend on to save our lives.

April 17, 2013 at 1:42 pm
(48) susna says:

I’ve been taking Levoxyl 125 for about 3 years. Started out taking a generic, but I developed a sore throat after a while. Stopped taking the med (my pharmacy tells me it was by Mylan) and the sore throat went away. Started taking it again, and the sore throat came back. So after researching the composition of various levothyroxine tablets, I talked my Dr into prescribing the Levoxyl since it reportedly had the fewest added ingredients (although I recently read that they added a couple of filler ingredients last year). Everything has been fine until I tried to renew the scrip this week. I have a call into my Dr’s office to see if he’ll switch me over to Tirosint. The pharmacy says they can get it, but from what I can see, my insurance company is not going to cover it. And knowing my Dr, he may balk at the change. What fun this disease can be…

April 17, 2013 at 4:42 pm
(49) Mary says:

The problem with me is that I’ve been taking Levoxyl for years and I had tried the generic about 3 years ago and it was a horrible experience that included rapid weight gain within weeks, water retention, pain in joints, memory loss, chunks of hair falling out, exhaustion, etc., etc.,. I finally am on a combo that works well for me of Cytamel and Levoxyl and, in fact, it has helped me lose the weight although it has taken me forever (25 pounds in 3 years, that’s the best my body can do.) I found out when I went to get a refill of Levoxyl a few days ago that it is no longer being manufactured (the doctor’s secretary and pharmacist’s words). Both wanted me to try the generic version. I have to say I panicked due to my experience with it and they were sympathetic and switched it to Synthroid. BUT….doctors have warned me that it is very important you don’t switch even the brand names around once you find the med and/or combo, you need to stick with it. I’m literally frightened that I will pack on the pounds let alone all the other symptoms. Even after only 2 days of being on Synthroid, I am having difficulty remembering words for things and I didn’t even realize until later today about my not remembering the simplest things. Being on Levoxyl and Cytamel has saved my life and now the idea of going back to how I was a few years ago before I was put on the right combo of meds. is so upsetting to me. Playing around with our lives is inexcusable. My fiance takes generic and has no issues when they switched him around. He has underactive thyroid and I have Hashimoto’s. Maybe that is why I have more issues than he? So upset!

April 17, 2013 at 8:05 pm
(50) Tracie says:

After reading all these comments i realize my fear is just too… on Levoxyl 12 years, thryoid cancer survivor, was changed once by accident by primary, (not endo) and it was horrible…now i have no choice.. glad to know I’m not the only one afraid and feeling like changing is me being told im going to go hypo and or / feel like pure crap… great..

April 17, 2013 at 9:40 pm
(51) Linda says:

Yes, I am also a thyroid cancer survivor (18 years) & have been on levoxyl since day 1 – just got my refill &after reading all these comments, I’m scared!!!

April 18, 2013 at 10:24 am
(52) Quanesha says:

As of today the medicine Levoxyl have been recall back and off shelves, and the doctors have to switch all patients to another brand.

April 18, 2013 at 11:13 am
(53) debbie T says:

I just found out today that I’m also forced to switch to Synthroid. After reading some comments online, I’m very nervous about the filler/inert ingredients.

I’ve been on Levoxyl for longer than I can remember. Fingers crossed that the Synthroid will be okay for me

April 18, 2013 at 2:45 pm
(54) Katie says:

I spoke with a pharmacist from Pfizer yesterday morning and was told that the EARLIEST return date for Levoxyl is LATE 2014, possibly even 2015.

Fasten your seat belts folks, we’re in for a bumpy ride. :(

I think there is a lawsuit here.

April 19, 2013 at 7:30 pm
(55) Karen says:

LEVOXYL IS BACK ON THE SHELVES. CHECK WITH YOUR
PHARMACY.
MY SISTER CALLED FROM CALIFORNIA AND SAID THAT CVS HAD THE NEW SHIPMENT IN STOCK AND AN AMPLE SUPPLY
I CHECKED WITH MY PHARMACY IN INDIANA AND THEY HAD IT ALSO.
YEAH FOR ALL OF US!!!!!!!!!!!!!!!!!!!!!!

April 19, 2013 at 7:31 pm
(56) Karen says:

Levoxyl is back in the Pharmacies,,,,,,,Yeah!!!!

April 19, 2013 at 9:09 pm
(57) C.R. says:

just spoke to my pharmasist after reading these last 2 posts about levoxyl being back on the shelf well not here in illinois……not yet im hoping soon

April 21, 2013 at 6:27 pm
(58) lisab says:

For Annie: I know it is Iodine allergy. I cant eat anyhting with salt levels higher that 100 mgs and I was tested for shell fish and it was negative.My allergist is the one who diagnosed me.
Then I ate 3 bing cherries, my throat closed up faster than you ever could imagine. I started to choke, vomit and could not breathe and other assorted symptons. I can’t eat salt because in america we iodize all salt. I get blisters on my tongue if I eat a potato chip.Think about it, theres so much salt in everything commercially made and iodine in almost everything from nature. I can’t even drink tap water, Only certain kinds of water. Believe me when I say I am Allergic to iodine and mercury.

April 21, 2013 at 8:26 pm
(59) Donna says:

I tried to fill my Prescription yesterday and was also told there was a shortage. I had Graves disease 3 yrs. ago and had Thyroid removed. I have 10 allergies to meds. including Synthroid . I live in Southern Pa. Has anyone got any in Pa? I’m truly upset!!

April 22, 2013 at 12:09 am
(60) Sue says:

My life depends on these drugs. I was switched from Levothroid 150mg and 175mg. I alternate the strengths daily, and when I was put on Levoxyl with the same doses and alternating days also, I felt really good for the first time in my life. I had Thyroid cancer when I was 30, I am 65 now, and have No Thyroid at all. These drugs are my lifeline, without them I could die a slow, painful, death. Stop playing around and get these drugs where they belong. Some of us don’t have a lifetime to wait. Try to live like I do without a thyroid, I know I’m not the only one out there, have your thyroid removed and living without the meds. Scary and extremely painful. No way to live your life. I’m always on the edge, wondering when the next meds I have been switched to will be removed from the market. I’m highly sensitive to the stabilizers in most generic drugs. I have severe reactions. And by the way Synthroid almost killed me, the stabilizer was the cause. Syn in Synthroid stands for man made synthetic drug. Synthroid is the brand name of the the synthetic drug.

April 22, 2013 at 7:16 am
(61) kelly says:

First they say that they are re calling it because there is a problem and yet they say, but if you still have some go right ahead and keep takin it….? Come to think of it, My doc started me on synthoid. My level was really high. I didnt gain any wait or anything, I just felt tired like drained and my hair got really dry and brittle. I thought I was tired because I have anxiety really bad. Had it since I was a kid. And I didnt really give it much thought as to why she switched me to the generic after a couple months. Why didnt my doc tell me about the recall. I cant say I felt much different going on synthroid except I was less pooped but no change in my hair. Then I started feelin that pooped feelin once in a while. that must have been the result of changing to the generic. So here I am complaining to my sister that there is no difference in my hair texture and I was gonna buy some biotine. I didnt know you can order synthoid yourself. did I mis understand that or can I? Or should I see a doctor in nyc. I live in an area in ny that Ive been mis diagnosed for 15 yrs of having a focal dystonia? Any way will Pray for all. God Bless. Hope you all feel better.

April 22, 2013 at 3:20 pm
(62) cindy says:

Don’t bother calling the Pfizer number listed they just tell you to “work closely with your Doctor” They won’t have levoxyl available until mid year 2014. I bet the price will be much higher at that time also.

April 22, 2013 at 6:47 pm
(63) Jason Mitchell says:

This is so frustrating for all of us. I have Hashimoto’s and was on Levothroid 175 mcg since 2003 and felt great. Then, earlier this year, Levothroid was recalled.

Since that time I’ve been on the Levothyroxine merry-go-round to see what alternatives work best:

Generic: Achey, not as good as with Levothroid
Synthroid: Felt OK, but had low-grade headache all the time
Levoxyl: Felt about as good as with Levothroid

So, what now? I’m pretty frustrated having gone from Levothroid, then Levoxyl and now I’m out of luck. Not too happy.

April 24, 2013 at 9:46 am
(64) Roxanne says:

Levoxyl is not back on the shelves… my pharmacy tells me it was just totally recalled. So, I just put in a call to my doctor to switch me to something else… I am Hyperthyroid and the heart palpatations started last night cause I didn’t have my meds… so, I really need to get on something else. Waiting for them to call me back with what they want to switch me to.

April 24, 2013 at 4:41 pm
(65) Coleen Dziachan says:

I too have spent all morning dealing with the Levoxyl recall and an inability to fill my current Rx. I called Pfizer and was told that the earliest it would be available is mid 2014. I have been dealing with hypothyroidism for 35 years and for years was on Synthroid and experiencing a lot of side effects. After consulting some alternative practioners I switched to Levothroid and felt normal for the first time in years only to have it discontinued. I then started taking Levoxyl and fortunately I tolerated it. Here is what I think is really going on. Pfizer bought out the smaller manufacturer of Levoxyl. Levoxyl and Levothroid are very old drugs that have been around for years and have been proven to be safe but there is no money to be made on them. I was shocked at how much cheaper they both were compared to Synthroid. As for Tirosint it runs in excess of $100/mo and isn’t covered by most insurance programs. I think these drugs aren’t coming back and will be reformulated so the drug companies can enjoy a hefty profit. Think of all the people on this medication. That translates to a lot of revenue. Believe me, your well being is their last consideration I’m sorry to say. I have been an RN for 40+ yrs and this is just the beginning. Hang on to your hats as Healthcare reform kicks in it is only going to get worse!

April 25, 2013 at 9:44 am
(66) Roxanne says:

What sort of side effects did you have from the Synthroid? That is what I ended up getting yesterday. I took my first pill of it this morning.

I’m actually not sure if Levoxyl was helping me completely or not… I was still having a lot of symptoms even though my TSH number has been steady at 1.9 … can you still have symptoms even with being on the medication?

April 25, 2013 at 3:58 pm
(67) Diane says:

I’m terrified! I was on Synthroid originally 15 years ago when I was diagnosed and became so sick from it , I had to stop taking it. At that point I was successfully switched to Levothroid. It was working FINE until it was pulled in 2012. So I tried a few and found I could successfully take Levoxyl. And now it’s gone , at least for a year. I have tried in the last 3 weeks Armour ( which made me nauseous, lips tingling, stomach pain etc). , L-thyroxine (which caused immediate dizziness, jitters and then a headache and brain fog all day), then Sandoz (which like Synthroid caused red , hot , flushed cheeks, jitters, heart pain and stomach pain). I am screwed…. tonight I will try Mylan- praying this one works. After that , there aren’t many left. My fear is none of these will agree with my system and then what???? THANKS a LOT to all the big companies that screw up , then pull their meds with no warnings and NO thought as to what this will do to thousands and thousands of patients……

April 25, 2013 at 10:05 pm
(68) Ellen in Oregon says:

I went to fill my Levoxyl .175mg several weeks ago at Costco Pharmacy and was told they could only give me 20 tabs rather than the 90 ordered. I called back today because I was down to 3 tabs and was told that Pizer had stopped production & there was no info. about when or if it would come back on the market. I had to accept Levothyroxine which I was taken off of years ago because I could never get the blood level to stabilize. I was constantly having to repeat TH4 labs and the cost was ridiculous.
This is the 2nd drug this year which is commonly used and just taken off the market with no info given to Doctors, Pharmacists or patients depending on this drug. I have no functioning thyroid so it could be life threatening to go without. The other drug as a morphine called MS Contin used to treat mod- severe pain. That drug also disappeared with no info. released by the manufacturer.
These drug companies take our monies & make huge profits off the patients depending on these drugs to treat serious medical conditions, but feel no responsibility to inform us or any of our health providers or pharmacists with a single bit of information so we can make timely changes. It is ridiculous and the FDA allows us to be treated this way because they cut back on regulations, gave the pharmaceutical industry all kinds of loopholes to get around things like telling us what was wrong with the drug we have been taking. I want to know why it stopped being manufactured!
Called 10 other pharmacies and no one had anymore Levoxyl in any dosage. Now I will go pay for Levothyroxine and ride the rollercoaster while the blood levels flux behind too high & too low.

April 26, 2013 at 11:11 pm
(69) Dawn Cowan says:

I used to be on Synthroid and did horribly…..It was as if i wasn’t even on medication, I felt miserable and blew up and was puffy and retained fluid…i also had more problems with Armour Thyroid as well! My endocrinologist put me on Levoxyl 5 years ago and FINALLY I felt Normal! It has been the only drug that seems to make me feel good without side effects…I was told that the their are different binding agents in these drugs. All I know is that I had to go to a cardiologist when I was on Armour! Levoxyl has been a life saver for me physically and emotionally…Why would Pfizer or the FDA take this drug off the market when it helps so many people! Don’t they realize that they are messing with our lives literally…what option now do I have…I am fearful that I will feel horrible once again and suffer all the crummy side effects that I once had with Synthroid…This is ridiculous….We need Levoxyl back NOW not mid 2014! I hope Pfizer and the FDA see all of our comments.

April 27, 2013 at 11:21 pm
(70) Luke says:

So the question is: what can we do about it? I was on Levoxyl 150 mcg, then generic, then Levoxyl again and can totally tell the difference (25 yr history). It seems obvious to me that Pfizer is just removing the drug from the market to tweek it and sell it again at a hugely inflated profit margin. This medication is vital to our well being and is being held hostage to profiteering. It should be illegal!! I am afraid of the depression, lack of energy, weight gain, hair loss, memory problems, and everything else that goes along with hypothyroidism. I shouldn’t have to suffer these symptoms because Big Pharma wants to make more money from our suffering and neither should you. Will you join me in a letter writing campaign or some similar sort of action? Why on earth would it take a year to replace defective bottles?? I know it’s BS and so do you.

April 28, 2013 at 1:00 am
(71) Kendra says:

I loved Levoxyl also. I had the same experience. Called in for my 90 day refill, only to find it wasn’t available. I started Synthroid this week. I’m feeling weaker this weekend, since starting it. I may try Unithroid again. It was pretty good.

For all of you who don’t do well on Synthroid, ask for Unithroid. It may be OK for you until Levoxyl comes back on the market. God Bless.

April 28, 2013 at 1:00 am
(72) c.r. says:

@ luke i will definetly join you i wrote some previous comments as well i been on this med for 20 years, when i was on synthroid it gave me arrythmias and still today i have those arrythmias the synthroid raced my heart gave me anxiety i was so nervous i couldnt sit still it grew a multinodule goiter in my neck the higher the dose they gave me to try and bring my tsh levels down didnt work instead i needed surgery to remove the goiter and half my thyroid and parathyroid after surgery i was placed on levoxyl 88mcg i been on that dose for 20 years and have maintained my tsh levels this whole time. being a retired nurse i can tell you that you are exactly right about them trying to make money off this low costing drugs it is very dangerous what these people are doing im up for a class action lawsuit how bout you ?? i called pzizer and told them if they were taking this off the market to gain profit they will be found out and theyll loose business instead of gaining business eventually were all going to have to switch to another medication too bad another company couldnt pick up the levoxyl and manufacture it. well let me know im onboard with you….just stay away from that synthroid…if people start having serious side affects which we know can be life-threatening maybe the fda will step in

April 28, 2013 at 9:04 am
(73) Savannah says:

After finally leveling off on a generic Levoxyl after 2 years, I picked up my prescription at my local Walgreens last month to find a notice stapled to the bag saying the manufacturer had been changed. At first, I didn’t think too much of it, but CLEARLY its having an impact on my well being as I have suffered some joint pain and mild muscle cramping this past few weeks. I’m on 175 mcg and can’t even split them effectively because they literally crumble in the pill cutter. Not to mention the depression that has swamped me for nearly a month now. At 42 I have NEVER suffered from depression beyond the small bout I experienced immediately after thyroidectomy prior to getting my dosage figured out.

They don’t understand how they are impacting lives with this Russian roulette dispensing.

April 29, 2013 at 7:04 pm
(74) LiLi B says:

I’ve been on Levoxyl since 1996. I had it switched to synthroid for one short period of time during which I got a tumor the size of a baseball and had to have 1/2 my thyroid out. I would never take synthroid again. Now I don’t know what I’m going to take. All these years it’s been Levoxyl DAW.

What I hope we can ALL do is find something else while Levoxyl is out that works for us and then when Levoxyl comes back, none of us buy it. Let them keep the stuff and see how we feel about being left with NONE for a year!

April 29, 2013 at 8:52 pm
(75) Tim says:

I’ve been on Levoxyl for 12 years because of Hashimoto’s . Other synthroid types I’ve tried have had side effects. It is frustrating to realize that this won’t be resolved until Spring of 2014! The quality of life, for so many people, will be effected. Is it time for a Class Action lawsuit? Hmmm… This type of garbage should not be allowed by the FDA or tolerated by the courts!

April 29, 2013 at 11:37 pm
(76) Janelle says:

I too and very disturbed by this. I felt much better once going off Synthroid and going to Levoxyl. Something in Synthroid makes me stomach not happy!! I just went to pharmacy and called doctor and was switched to no other then Synthroid! I can only keep my fingers crossed that I will be okay, until I go to my endo in June. At that point based on how I feel I may check out triosint. I don’t have a thyroid and I also have hashimotos, so not taking medication is not an option.

April 30, 2013 at 11:48 am
(77) Pat says:

My pharmacist alerted me to this last week. I have been on Levoxyl for 4 years since my thyroidectomy. Levoxyl was the only one that my pharmacist could find that didn’t have lactose. The Synthroid rep told him that there was so little lactose, it doesn’t affect anyone – ha ha. Fortunately my pharmacy is a small, family-owned chain. They collected all they had and sold it to me so I have over a 90-day supply. The pharmacy will compound it for me if Levoxyl is still off the market. I can only imagine the battle I will have with my insurance company to get them to reimburse me.

April 30, 2013 at 5:16 pm
(78) PRONTOLADY says:

I can get if from CVS. No problem

May 2, 2013 at 2:02 pm
(79) mary says:

I have been taking Levoxyl for 10 years, did not do well on Synthroid or Armour before that. I spoke with a pharmacist at Pfizer and she said Levoxyl will most likely not be back on the shelf until mid 2014. I told the pharmacist at Pfizer that I felt if the “powers that be” at Pfizer needed to take Levoxyl they would have the “problem” figured out in short order. Or, most likely the CEOs at Pfizer have some Levoxyl for themselves should they need it! I told her that Levoxyl is obviously not a priority for them and that a college chemistry class could figure out what the issue was and figure out a way to fix it in a timely manner. She said it will take a long time to have it back on the shelf because of the FDA. I called the FDA and they said everyone loves to blame the FDA when these companies quit manufacturing a medication. I wish this would make national news! I would be all for a class action lawsuit. How is a class action lawsuit initiated? Money seems to be the only thing that talks for these pharmaceutical companies. My pharmacy was going to just switch me to the generic and I said NO. Will be going back to Synthroid and saying my prayers that it works!

May 2, 2013 at 6:50 pm
(80) Judi L says:

Warning! I got T4 compounded at my pharmacy in place of the Levoxyl (I also take a T4/T3 combo compounded). I took the compounded T4 with my other medication for 5 days and ended up in the ER with severe hyperthyroidism. My blood pressure was sky high. Anxiety through the roof. Lump in my throat. Ugh. My doctor told me to stop all thyroid meds until I feel better. What a nightmare. I called Pfizer and they said probably summer of next year. I cried on the phone.

How are the rest of you people doing?

May 2, 2013 at 7:14 pm
(81) Babygirl says:

I’m sorry but I find it EXTREMELY SUSPICIOUS that Levoxyl was just “reformulated” as I’m sure you all noticed your Levoxyl tablets looking very different being much thinner as I did when I filled a 90 day prescription this January AND NOW ALL OF A SUDDEN it has been RECALLED?!?! I DO not believe this recall has anything to do with the tiny plastic canisters in the large bottles supposedly being the culprit of mysterious odors—-if feel it has to do with the actual reformulation of the Levoxyl tablets themselves. If it WERE the tiny freshness canisters then WHY totally hault production of Levoxyl for an entire year? This makes absolutely NO sense. Many many other medications also have a freshness canister in the large bottles so there ARE more than 1
manufacturer of that canister to obtain them from. I too have been on Levoxyl many years. Once I was switched to the generic levothyroxine (which I am all for generics) BUT after a few weeks I was again SO hypothyroid that I was put back on Levoxyl & leveled out again swearing I will NEVER be switched again because it DOES make a huge difference switching thyroid medication brands in your readings. Many of us DEPEND on Levoxyl to replace our entire thyroid hormone. This new “reformulated” version has left me feeling tired, feeling so down & no patience etc as we all have felt when our thyroid level is not “right” so I know this reformulation is “different”. And for us to call Pfizer & talk to someone from another country (outsourced) & get a canned response is ridiculous. So I , like the rest of you, now have tut on something else & dread the fluctuating levels & feeling even worse along with more expensive blood

tests. They are tinkering with the lives of thousands upon thousands of people

May 3, 2013 at 8:19 am
(82) Karen Garner Williams says:

I had taken Levoxyl for ten years. In the past ten months I have had nightmares, ups and downs, TSH levels not steady and felt very bad. I feel now it was related to the new filelrs added to Levoxyl. I am happy to be off of it. Tried Synthroid many times, felt awful. I am going to Armour thyroid, have wanted to for years, but was afraid of the testing period. Might as well do it now. Dessicated Thyroid is bio identical. Let’s face it folks, the synthetics are made in a lab in a petri dish. Do you want all that synthetic stuff going into your body? Not me.

I am doing better in the interim on Myla Levothyroxine, which has minimal fillers. We should all look into the post by Susan #42 and the Web Site that shows ingredients in all types of thyroid supplement. That helped me the most. Thank you Susan!

May 3, 2013 at 8:34 am
(83) Karen in San Diego says:

I got more information on Tirosint. This is the only T-4 thyroid supplement in a gel cap containing only gelatin, glycerine and water.
It is the purest thryoid supplement that is synthetic on the market. If you go to the Web Site you can get a first prescription free for 30 days.

Again, check out the Web Site given by Susan # 42. This lists ingredients in many supplements of T-4.

I am all for a class action lawsuit against Pfizer. That may throw them off the cliff. They are in enough trouble with all the statin complaints.
I hate BIG Pharma.

May 3, 2013 at 2:00 pm
(84) Karen Garner Williams says:

All of you who have posted here: please check out http://www.drugtalk.com, “inactive ingredients in thyroid drugs”.

This will give you the exact inactive substances in each synthetic or desicatted thyroid supplement. No wonder Synthroid is hard to take. It has Acasia , sugar and cornstarch in it, among other things.

Also be alert to the dyes that are added to designate strengths. There is always a 50mcg dose in every synthetic that has no dye. The dyes added are in great strengths.

New to the list of synthetics is Tirosint. This is a gel capsule with T-4 and just water, glycerin and gelatin in minimal amounts. No added fillers and binders as are added to the other synthetics. This should help many of us.

May 4, 2013 at 2:47 am
(85) Pharmacist says:

I strongly recommend trying alternatives that are readily available such as levothyroxine or Synthroid. They are both AB rated with Levoxyl and Levothroid. These drugs have what is called a NTI (narrow therapeutic Index) and many doctors and patients believe they aren’t interchangeable. The truth is that FDA research days they are the same and that’s how we can legally interchange them. I do not recommend getting started or getting a doctor to change to Tirosint, Unithroid, Armour Thyroid, NP Thyroid, Naturethroid, or Levothroid ( not sure they still even make Levothroid). Armour and NP and nature throid are all interchangeable but alot of pharmacies don’t keep them or don’t want to keep them and I don’t blame them. The only thing that keeps Tirosint from being AB rated to Synthroid and levothyroxine is that it’s a capsule and again good luck getting someone to order it and keep it. Unithroid and Levothroid are just more branded generics of Synthroid and if you ask me just an excuse for an endocrinologist or a patient who thinks they know everything or thinks they have special thyroid problems (when they don’t) to annoy you about keeping it in stock. I’m not even going to attempt to debate all the so called “differences” that patients and doctors believe between the interchangeable thyroid medications because I’ve been doing this long enough to know all I’m going to get is an argument. All I’m saying is try to take something normal like levothyroxine like the other millions of patients who are miraculously FINE from taking it and if you have to be special take Synthroid. I have every brand of thyroid I mentioned above and it’s honestly ridiculous. Half I’ve ordered one time for one patient and they sit there collecting dust waiting to expire. It’s honestly frustrating and a waste if money to pharmacies to keep them. I wish doctors who attempt levothyroxine in all patients before all of the other crazy ones. I’m sorry if you’re offended but its totally ridiculous

May 4, 2013 at 10:52 am
(86) Carolyn says:

Pharmacist…..it sounds to me like your issue is more of a “stocking” issue. I’m sorry you have to stock so many different brands. But…who are you to say that people don’t have “special” circumstances? The body is very complex and I believe that when people say they react different to one brand over another….they are telling the truth. For my situation, I am a breast cancer survivor after 24 chemo treatments and 33 radiation treatments which I finished last July. I have been on Levoxyl for 10 years. I am trying so hard to just get back to normal. So, I am in tears after being forced to change a medication I am used to. I am already fighting side effects from the other. I generally try to take a positive approach to things in life, so every day when I take this new little pill I am being forced to take, I will pray that it will make me better than before. Maybe it will be a positive change. And I am praying you are not my pharmacist!!

May 4, 2013 at 8:28 pm
(87) Babygirl says:

Well said, Carolyn. God bless you in your fight. I feel sorry for “Pharmacist” showing no compassion or empathy for his sick & ailing customer & implying all his thyroid medication purchasing customers are crazy. I wonder how he explains their hypothroid lab results after being switched from a name brand to generic thyroid replacement medication when the patient had steady, normal readings before being switched? The proof is in the numbers, in black & white & not “just in someone’s head” as he’s implying his thyroid medication customers must all be crazy & making symptoms up. “Pharmacist” must never have ever suffered with a life threatening or debilitating health problem & therefore has no empathy or compassion for those who have or are living thru now. I too concur with Carolyn & pray he doesn’t work at any pharmacy I patronize.

May 5, 2013 at 12:39 am
(88) mary h says:

I have been on Levoxyl for two year because I am allergic to lactose. I need to carry an epi pen because of my allergy to it. the Dr. had prescribed Synthroid. It contains lactose. I was not even informed they had changed it. I ended up paying for it before I noticed the change they refused to accept it back. Now I can’t find any thyroid medicine without lactose fillers. what can I do?

May 5, 2013 at 7:29 pm
(89) Karen Garner Williams says:

To the Pharmist:

You have no consideration for the patients who take thyroid and what they are going through.
I speak as one who has a Ph D in biology, as well as an MD degree and as one who has taken Levoxyl for ten years and is now having difficulty with the Synthroid and Levothyroxine replacements. I would never talk to my patients the way Pharmacist did to this Web Site. I suggest this pharmiast check out the Web Site I mentioned earlier, drugtalk.com under “inactive ingredients in thyroid meds”. There is a great difference between Synthroid, Levothyroxine(Mylan) , Armour, and other dessicated thyroid supplements.

May 5, 2013 at 7:51 pm
(90) Karen Garner says:

I speak as an MD and PhD in Biology with 40 years of experience and one who is also seeking a replacement for Levoxyl. Pharmacist does not know what he is talking about regarding differences in thyroid meds. He was way out of line referring to thyroid supplement clients as crazy. He is a discredit to his profession. He should instead be dedicitated to helping patients find a satisfactory replacement instead of tearing them apart. That is, after all, his job.

I won’t repeat what I said earlier about Drugtalk.com and additives. Just check it out. Pharmist in particular. If you want to take BHA, take the Mylan T-4 and die early. BHA is a well published carciogen and outlawed in the State of CA.

I found a synthetic T-4 , made by Sandoz, called Levothyroxine(synthetic T-4) that has minimum additives. No iodine, NO BHA,a carcinegen (in Mylan T-4) , no sugars , no acacia(in Synthyroid) , no dextrose(high glycemic index sugar in Armour). The active incredients in Sandoz T-4 synthetic are magnesium stearate, microcrystilline cellulose(both of these in Levoxyl), sodium starch glycolate(from potato-no gluten) , and colloidal silicone dioxide. Thirty day supply available at Walmart Pharmacy for $4.00 / 30 days. To avoid any allergic reaction to dyes, the 50 mcg tablet in all synthetics has no dye added.

My best to all of you looking for help. Keep strong.

May 5, 2013 at 7:57 pm
(91) Karen Garner says:

Pharmacist does not know what he is talking about regarding differences in thyroid meds. He was way out of line referring to thyroid supplement clients as crazy. He is a discredit to his profession. He should instead be dedicitated to helping patients find a satisfactory replacement instead of tearing them apart. That is, after all, his job.

I won’t repeat what I said earlier about Drugtalk.com and additives. Just check it out. Pharmist in particular.

I found a synthetic T-4 , made by Sandoz, called Levothyroxine(synthetic T-4) that has minimum additives. No iodine, NO BHA,a carcinegen (in Mylan T-4) , no sugars , no acacia(in Synthyroid) , no dextrose(high glycemic index sugar in Armour). The active incredients in Sandoz T-4 synthetic are magnesium stearate, microcrystilline cellulose(both of these in Levoxyl), sodium starch glycolate(from potato-no gluten) , and colloidal silicone dioxide. Thirty day supply available at Walmart Pharmacy for $4.00 / 30 days. To avoid any allergic reaction to dyes, the 50 mcg tablet in all synthetics has no dye added.

My best to all of you looking for help. Keep strong.

May 5, 2013 at 8:04 pm
(92) Karen Garner says:

Of course Pharmacist would recommend Synthroid and Levothyroxine T-4. and not to change to other meds, this is where the big bucks are. Going to desiccated thryorid or Tirosint might be much more beneficial to the patient. This is not a pharmacy goal. Big Pharma wants Big Bucks at any cost, even to the detriment of YOUR and my health. It is a shame that this is where our society is now. Back in the 50′s, before Big Pharma, that was not the case.

May 5, 2013 at 8:07 pm
(93) Nick says:

Have taken Levoxyl for 18 years. Now have tried both Synthroid and Levoxylrxine both making my heart racing, hot flashes, nausea. What else is out there to take? So frustrated.

May 5, 2013 at 9:14 pm
(94) Karen Garner says:

Nick: Ask your doctor about Sandoz brand levothyroxine(T-4 synthetic) or Tirosint.

Tirosint is a newer synthetic T-4 made in gel capsule that contains only the T-4, water, gelatin and glycerin.

Sandoz T-4 is available at Walmart Pharmacy , $4.00/30 day supply. .see drugtalk.com for additives in thyroid drugs for more info.

I am in similar position – on Levoxyl for ten years and having difficulty with Synthroid and Mylan Levothyroxine substitutes for Levoxyl.

May 6, 2013 at 12:02 am
(95) Sue says:

I have been on Levoxyl for the last five years after being on Armour for many years. I have never felt better than when I’ve taken the Levoxyl . Synthroid made me so very sick, felt like I was putting poison in my body! I cannot tolerate lactose which greatly limits the medicine available. Tried my first genetic pill this morning and felt horrible even tried some Lactaid but it didn’t help . Calling Pfizer did not help. At this point I feel the only way the big shots will listen is a class action lawsuit. We all depend on this drug to live and they are taking the situation very lightly as if you could easily find another medication. We need to show them we mean business!

May 6, 2013 at 6:15 am
(96) Diane says:

Update on my earlier post- I left a posting above about my struggle to find a thyroid med to replace Levoxyl. After trying Armour, Sandoz, and L-thyroxine, I am slowly adjusting to Mylan. I am taking 1/2 .50 along with 1/2 .50 of what is left of my Levoxyl. I tried a .50 dose of the Mylan last week but had heart palps and other side effects. I am hoping/praying that by slowly introducing it , I will be able to adjust before my Levoxyl runs out. I am supposed to be on a .75 dose, but I figure some is better than none. I don’t care if Mylan supposedly has a carcogen- I just want to be able to function. My suggestion to all of you who are in the same boat, is keep testing small doses of other thyroid meds. My doctor also suggested I stay off thyroid meds for about 3 days before I try a new one so as to get back to base level. Be aware of side effects and keep trying. BTW, where did someone find Unithroid in the US??? I cannot find any pharmacy that can find it. Hang in there everyone- this is a bumpy ride for all of us.

May 6, 2013 at 7:04 am
(97) Karen Garner W. says:

Typing error post number 82. I am doing much better in the interim on SANDOZ Levothroxine, not MYLAN. Sorry.

May 6, 2013 at 10:45 am
(98) c.r. says:

@karen, hun if i can have a minute of youre time,i have hashimotos and have half thyroid and parathyroid first placed on synthroid 22 years ago it gave me palpitations and arrythmias after surgery i was switched to levoxyl 88mcg and have been on it for 20 years with no side affects and stable tsh levels im so scared to switch to anything as i now live with tachcardia psvt and pvc arrythmias…i dont want to feel any more palpitations then i do finally when my arrythmias are getting stable and i feel good i have to make this change my endo recommended to switch to levothyroxine but didnt say which brand my pharmacy only carries mylan…..if i feel arrythmias when switching what do i do next ??? so confused and scared….any advice is appreciated…thank you

May 6, 2013 at 11:18 am
(99) casey says:

I’ve been beside myself after hearing about the recall, it’s reassuring to see that some of you have found alternatives. I’m 25, I’ve been taking Levoxyl for 4 years and I’ve been doing great on it. When I was first diagnosed with Hashimotos, I tried Synthroid, which didn’t improve my symptoms, and made my hair start falling out like crazy. I switched to Levoxyl and have been stable for about 3 years. My doctor has had me on Tirosint for about 3 weeks, and while I thought that since its supposed to be more pure, that I would do well on it, I have been feeling very tired, easily agitated, and well, basically how I felt before I was being treated. I’m supposed to be leaving for the Peace Corps in 5 months, and I’m really worried about getting this straightened out in time, since they have very strict medical requirements and I’ve heard of people being deferred after starting a new medication since they want to see you stable for at least 6 months beforehand.
By reading the posts I know there are a lot of people out there who are a lot worse off than myself, I can’t imagine how it must feel to rely on a medicine for 20 years only to be told you can’t get it because it smelled funny. I hope everyone finds a solution.
Has anyone had a good experience with Amour? Thats what I’m thinking of trying next, but I haven’t really seen that many reviews on it.

May 6, 2013 at 4:01 pm
(100) Jennifer says:

I have been on levoxyl for the past 13 years and never had a problem. I am extremely upset about all of this as well. I have tried synthroid for the past week and am constantly sick to my stomach and very foggy in addition to forgetting words and overall just being confused most of the time. I know it’s due to the fillers. I am in the Riverside/San Diego county area of California and have been unable to find the SANDOZ brand. Does anyone know of a pharmacy that carries it??? I would like to try it but can only find Mylan which has povidone and what I believe is the cause for the fogginess.

May 6, 2013 at 5:00 pm
(101) susan says:

I commented above that I was trying to get my doctor to order Tirosint but was afraid he would give me a hard time about it and that my insurance would balk at paying. Wonder of wonders, the doctor’s nurse worked with me to get the order approved and put in a pre authorization to the insurance company explaining the problems I’d had with generics and why I’d been taking Levoxyl in the first place. Bottom line: the insurance company covered about half the cost. My co-pay was higher than for the Levoxyl, but manageable. I’ve been taking the Tirosint for about 3 weeks and it seems to be working well. I guess we’ll see how well next time we test.

May 6, 2013 at 11:36 pm
(102) Karen Garner says:

Sandoz brand synthetic Levothyroxine is available from Statler Bros. Pharmacy in CA . Thirty day supply of .175 dose is $8.02. Check with your insurance for coverage.

Walmart and CVS San Diego CA can not order the Sandoz. They dispense Mylan levothyroxine.

Sandoz brand additives are microcrystalline cellulose, magnesium stearate, (in Levoxyl). The other two are colloidal silicone dioxide and sodium starch glycolate(from potato – no gluten).

To c.r.: I have Hashimotos. My endocrinologist told me NOT to take iodine(Providone) . I too have PVCs. Study the additives, find out which ones cause what symptoms and make a joint decision with your doctor on what thyroid to take. Drink enough water! Avoid caffeine!
\
See drugtalk.com “additives in thyroid supplements”.

Womens International Pharmacy compounds synthetic T-4 into a capsule and the only additive is olive oil. Their number is 1-800-279-5708. They have facilities in AZ and Wisconsin .

To Casey: there are alternatives to Armour, which has additives. There is Nature Throid(additives are non allergic) , or Westroid-P
( pure). Womans Intl Pharmacy carries Westhroid P 30 capsules for approximately $15.00.

I have shared what information I have learned after three weeks of research. That is all for today. Hope this is helpful.

May 6, 2013 at 11:45 pm
(103) Jennifer says:

Karen, thank you so much for the info!!! This forum and everyone here has been so helpful. It’s nice to know that at least we’re not alone in this!

May 7, 2013 at 8:19 am
(104) c.r. says:

@KAREN THANKS FOR THE TIPS HUN BUT MY ENDO DID SAY I CAN TAKE LEVOTHYROXINE BUT IM NOT SURE IF SHE REALIZES IT HAS IODINE…HOW FRUSTRATING I ONLY HAVE ONE MORE MONTH LEFT DO YOU KNOW WHERE THEY CARRY THE SANDOZ BRAND IN CHICAGO ?

May 7, 2013 at 1:47 pm
(105) Karen Garner says:

J. R. You will have to call the pharmacies in Chicago to find out which one can get Sandoz T-4 . I am in San Diego.

My recommendation from experience: Mylan T-4 should be avoided.

Note: take medwith water/juice and swallow. Do not put under tongue or keep in mouth. Most T-4 have quick action adsorbtion.

Woman’s Intl Pharmacy, 1-800-279-5708, compounds a synthetic T-4 in capsule form with only olive oil in minimal amount as additive.
Thirty day supply .175 is only $15.00 plus shipping(from Wisconsin). Lower dose would be less expensive. Check with your insurance on coverage.

May 8, 2013 at 12:30 am
(106) robin says:

I spoke with Pfizer today and was told they voluntarily took the levoxyl off the shelves for 2 seperate reasons…first was because of the odor coming from the white packets that are in the bottles to keep them dry and fresh, the 2nd reason was because the older levoxyl was removed because the older levoxyl, not meaning out of date, was tested and some were sub standard so they removed them as well. Even though they are on the shelves and sealed, Pfizer still will open them at random and test them so even though the levoxyl probably was ok for the public, including myself, to take, they wanted to be sure these issues were handled so now, they are studying what caused the odor from the bottles and why was the older levoxyl even though still within the exp date was substandard. The unfortunate is that I, among millions of other has to begin a new thyroid medication which means new side effects ect. This is such a hassle for me as well. I start synthroid today and I pray the side effects are tolerable and minimal.

May 9, 2013 at 10:20 am
(107) c.r. says:

@karen…. thank you so much for youre time…i did some more research and of course you are right people with hashimotos should avoid povidine a form of iodine….synthroid has it and thats probally what grew the goiter in my neck to begin with horrible side affects from it and povidone is also in levothyroxine by mylan which we discussed and levothroid as well….armour has an ingredient as well which says if you are hypersensitive to iodine do not take so its eliminating alot of the meds on the market for me…i called a compound pharmacy in the area and apparently other people have had this drug compounded for them i think i may go that way as well its going to cost more but i think ill feel much safer that way so there is a option for the levoxyl …thank god !!! im going to run this info by my general med doctor…my endo im so mad at for not informing me about the povidone… time to switch endos…thanks again ill keep you informed

May 9, 2013 at 6:18 pm
(108) c.r. says:

ALSO IF YOU GO TO ….LEVOXYL.COM…. YOU CAN NOW ENTER YOURE EMAIL ADDRESS FOR UPDATES FROM PFIZER

May 9, 2013 at 9:51 pm
(109) ProudMary says:

Fellow thyroid sufferers. I think this is a direct result of Obamacare. Yep! I just heard on the radio… people who take brand name medications for “chronic conditions” will soon be given one of the “new generics” in order to keep health care costs down.
This quote is from ThinkProgress.org: “President Barack Obama’s healthcare overhaul law rewards the use of generic drugs as a way to decrease healthcare spending, which rose about 4 percent last year and accounts for about 17 percent of gross domestic product.” So there we go. Pfizer is one of the companies mentioned in this article too. Levoxyl is pretty inexpensive to purchase out of pocket without ins company.. I have to pay for my Tirosint out of pocket w/o my ins co. The pharmacist said it would be expensive but $1/day to feel well isn’t much to me. I’m not wealthy by any means, but I would spend more than that on sinus infections & headaches from generics so pick your poison. I will take the brand names Every Day! They work! it is just difficult to find docs and pharmacists who believe us. I think we should write to our Reps in the House and Congress. Let’s get this decision to take generic versus brand name back between pt and doc, not lawyers and ins companies.

May 9, 2013 at 10:39 pm
(110) evik says:
May 11, 2013 at 7:17 pm
(111) Bonnie says:

Lawsuit is a must. As soon as my husband started to take Levoxyl his blood pressure was ski high and he was always on edge. called dr several times letting her know that he is not doing good, his heart rate is so high and he is acting like a person who is always on edge. Dr/ said its because his thyroid is working now and it is normal. How can blood pressure that was 110/80 go to 180/110 reflect a normal person? How can a person that was always mellow become a raging and high strong after taking generic Levoxyl for 1 month. I was getting scared watching my husband having headaches and constant changes in the mood for a while. Dr kept saying it was normal. Please tell me that it is not……..
I am glad they recalled it and I know that they did not recall it for odor. Talking to phsycoatrist, I was told that people on wrong thyroid meds are mimiking bi polar disorder going high and low at all times. As soon as he stopped because of the recall and was switched to another meds, he is fine. blood pressure is down and all the other symtoms are gone. REFOLMULATE THAT.

May 13, 2013 at 2:55 pm
(112) Joanne says:

When I first changed to Levoxyl, I had problems with anxiety, increased blood pressure etc., but my Doc at that time reduced my dosage twice – I went from 125mcg to 88 mcg. I am doing great on Levoxyl. Lost weight for the first time in 11 years and am feeling much better. I have only 90 days of Levoxyl left and I dread what happens next. I am now with Kaiser and I pay out of pocket for my med as Kaiser does not carry Levoxyl. I will try Tirosint if I can talk my Doc into writing the prescription. Good luck to everyone facing this issue. – Joanne

May 13, 2013 at 9:52 pm
(113) Mel says:

Local News in Santa Barbara has just run A Pfizer segment letting all men with the inability to get erect know that they can now order their Viagra through their website. Are they insane are they really this inept of a company that they support Men with erectile dysfunction more than a Woman who needs a medication that supports her whole system. Pfizer we Women need you to know that we are not okay with your letting us know we might get Levoxyl by mid 2014, are you really this unconcerned with our bodies and really that much more concerned with a man’s ability to achieve a hard-on. I am all for sexuality but Women need you to take their very health concerns just as seriously or are we really to believe you are a great company because you can keep your production of Viagra pumping! Pun intended. I expect Pfizer to get up of their duffs and start production of Levoxyl if they can get a man up then they can surely figure out how to keep Women feeling good enough to want to have sex with their Testosterone induced husbands!

May 15, 2013 at 12:53 am
(114) Charlotte says:

Help! I have been on levoxyl for ten years. I just started taking synthroid a little over a week ago. I am having dizzy spells when I get up or lay down or feel foggy the past couple of days. Has anyo e else had this issue?

May 15, 2013 at 1:11 am
(115) Csiligo says:

Help! I have been on levoxyl for over ten years. I started taking synthroid a week ago and the past two days I’ve had foggy and dizzy spells sittiing up and laying down. Anyone else have this issue?

May 15, 2013 at 7:05 pm
(116) Christy says:

Same issue here with Synthroid. Felt okay after 5 days, but on 6th day felt like I had a bad case of the flu. On day 11, I am lightheaded, tired and agitated. Called my Dr – he recommended generic Synthroid. After reading everyone’s comments, I’m sure this will not be the answer. Will give it through the weekend and if I don’t feel better, will ask my Dr. about Tirosint.

May 15, 2013 at 8:40 pm
(117) Janice says:

Beware of the hair burgular, “SYNTHROID” will make your hair fall out. First your family will start to complain that your hair is all over the bathroom, especially the tub and on towels, and then you look in the mirror and where you part your hair is wider and the hair is thinner. I was diagnosed with Graves Disease while taking Synthroid. I had the radiation treatment that destroys the thyroid. I have been on Levoxyl for over five years and Thank God For It.. I cannot take the levoxithorine because it is like taking water for me. My body does not absorb what it needs to keep me. I was given it withour realizing it after being on levoxyl for 5 years. My energy was zapped, my bowels refused to move, my period went haywire, and all I could do was cry. Three weeks into my prescription I realized I was taking the generic for Levoxyl. They noted on my chart to never give it to me again. I went to the doctor yesterday, May 14, 2013, and reminded my physician to always ask for Levoxyl. He never mentioned there was going to be a problem getting it. Went to Walmart where they said it was coming in the next day. Went back and was told it would be 2014. I have two left. What the hell???????????????????

May 16, 2013 at 1:04 am
(118) Amber says:

Anyone else have substantial mood issues after switching from levoxyl? I’ve been extremely emotional (crying all the time for no reason). It was probably about 6 weeks ago that i switched off levoxyl due to pharmacy not having it available.

Just wondering if Im the only one or if the crying and anxiety could be something else.

May 16, 2013 at 1:06 am
(119) Amber says:

Has anyone else noticed substantial emotional changes after switching from levoxyl ? I have been extremely emotionl, crying all the time for no reason and anxious.

May 16, 2013 at 9:57 am
(120) LacyKim says:

I’m so sad about this. I’ve tried synthroid and I gained 40 lbs in 4 months, my hair fell out and my skin was permenantly dry regardless of how often I put on lotion. Generic didn’t help my levels, they were all over the place! My Publix pharmacy is great and have called around to every other Publix in the area to find me a month’s supply for the last 3 months but I know its going to end soon.

May 16, 2013 at 2:14 pm
(121) Renee says:

Went to get my Levoxyl filled two weeks ago only to be told about the shortage of it. I was really upset to hear this because it took my current endocrinologist about a year to get my thyroid levels perfect. I didn’t have any luck with generic synthroid. It was the levoxyl that worked perfect. Well, pharmacist gave me name brand synthroid as a replacement for the levoxyl. Same exact dose (112mcg). I figured I’d give it a try before assuming it wouldn’t work. Well, yesterday all of the symptoms started. I slept for 21 hours!! Muscle fatigue and joint pain… I can’t stay awake. I called the Dr today and he asked me to come in right away to have my labs drawn. Hopefully we will figure out what’s going on. I wish I could get my hands on some levoxyl!

May 16, 2013 at 4:55 pm
(122) Karen says:

Has any tried Tirosint? If so, what is your experience with it?

Would appreciate any comments on Tirosint.

Thanks.

May 16, 2013 at 8:41 pm
(123) Colleen says:

@ Karen Garner …Your a God Send……….thanks goodness I found this website ….I thought I was losing it I too am struggling without Levoxyl, I have had two serious allergic reactions to the generic Levoxyl (Mylan) & then tried Synthroid (twice) my Doc thought it was the dye,the first time & suggested I try again, so against my better judgement I tried again and broke out into hives in 40 minutes, he still insists I am not having a reaction to these new meds !!! in addition horrible hair loss, muscle cramping in my legs, sick to my stomach, funny coating on my tongue..feeling foggy…..thanks to your suggestion I am trying Tirosint

May 17, 2013 at 11:43 am
(124) Tricia says:

I was on levoxyl for 27 yrs and then could not take it. It made me feel ill and not mentally the same. I later found out it was bought out and manufactured elsewhere. My body is so hypersensitive to change that I think they have changed for cheaper ingredients for their own cost effective reasons. They can get away with anything. Has anyone else notice any difference? I am really curious since now I am very ill and did well for 27 yrs.

May 17, 2013 at 8:50 pm
(125) c.r. says:

@karen…..met with my endo and gen med we agreed on levothyroxine by sanodoz theres only 2 more additives than levoxyl and 2 the same so we thought that would be the closest match we also agreed to check tsh and uptake levels after 6 weeks if my tsh is higher then normal im going to stop the generic and have the levoxyl compounded for me i found a pharmasist who will compound levoxyl for 39.99 per 30 day supply for me it would be worth the price but im hoping the generic by sandoz will be sufficient i have one more month left getting very nervous ill keep you informed thanks again

May 18, 2013 at 9:52 pm
(126) Dr Nancy says:

I am appalled by Pfizers ignoring the 7 calls I made to them starting last winter about the fact that my Levoxyl 137s were way too small and not workinjg. My doc said I must be eating more when I gained thirty pounds from not eating. They should be sued for this. They were trying to cut costs by cheap manufacturing and it cost me my life.

May 19, 2013 at 3:01 am
(127) stacy says:

Im not taking no more of this foriegn crap.

May 19, 2013 at 7:15 am
(128) Kim says:

I am horrified that I had to find this Info online instead from my pharmacy or physician, I just refilled my 200mcg which is very hard to come by, the pharmacy didn’t tell me I might not be able to get it, my physician who i think should contact their patients, not a word. And what really sends me over the top is my insurance carrier whom i know is aware, nothing from them either!!! I can’t take generic levoxyl nor synthroid, i am an 8yr cancer survivor that had a total thyroidectomy, I remember how horrible i felt and long it took to get my levels right!!!

May 19, 2013 at 7:23 pm
(129) Mary says:

Lisea, I am allergic to povidone, a binding agent for pills. Levoxyl does not use it. The generic does.

May 20, 2013 at 10:52 pm
(130) Laura says:

I just found out today about Levoxyl being recalled. After 6-weeks of blood tests and driving out-of-town to see my Endo, she approved me at 100 mcg of Levoxyl, just to find out it’s no longer available. I have been figuring out what dose works for 4 months, since levothroid was also recalled. What the heck is going on??? Not only that, my insurance ends in 2 weeks and now I have a pre-existing condition…no insurance.

May 20, 2013 at 11:32 pm
(131) Karen Garner says:

c. r.

Good news and report from your doctors. Sandoz synthetic Levothyroxine is the closest substitue available to Levoxyl.

For new commentors see my post 90, 91, and 94…

I also tried Tirosint. It was great. The only problem is that the highest dose it comes in is 150 mcg. I need .175. I have to buy a pack of 100 mcg and a pack of 75 mcg and it COSTS if your insurance does not cover it. It is considered two prescriptions. Costco does carry the Tirosint. My insurance company will cover it with a doctor’s letter verifying that I cannot tolerate the additives in the other substitutes for Levoxyl(Synthroid and Mylan T 4).It would cost me two times the $6.65 I would pay for a brand name. Not bad.

Since I did so well on Sandoz T-4, I decided to go with that just to get stable. I can refine my selection at a later date as more information comes out.

Again, new readers: check out drugtalk.com “additives to thyroid supplements”. If you look up each ingredient, you will know why you cannot tolerate Synthroid or the generic Mylan T4.

Yes it is a shame this information does not come from the doctor or pharmacy. What I see here is an American Public at work helping others and exemplifying the American spirit. I love it! I have hope for our country.

May 21, 2013 at 7:14 pm
(132) Stephanie says:

Just found out about this today. UGH so frustrating! I have been on Levoxyl for 15 years and don’t do well with generic. I just called a Compounding pharmacy and they said they can make Levoxyl with less than 1% variance from the manufacturer. I am going to try it.

May 22, 2013 at 12:23 am
(133) Kitty says:

What’s going on???!!! I’ve been taking Unithroid for over 20 years and now the manufacturer says it’s on back order until August. Hate starting over. Will try Sandoz Levothyroxine for now, but looking into Tirosint. Who knows. It might be a blessing in disguise and I might feel better all together. Synthroid made me very ill too.

May 22, 2013 at 2:53 am
(134) MED says:

@karen garner

Thanks so much for all the research that you posted about Sandoz and Tirosint. I’ve been on Levoxyl for 13 years, completely devastated about this recall. My body doesn’t do well on generics..been there and suffered until I made the switch back to Levoxyl.
Got my doctor to prescribe Tirosint – I’m keeping my fingers crossed that my body will take to it. Will start researching where and who provides Sandoz, Target pharmacy carries the Mylan brand.
Good luck to all!

May 22, 2013 at 6:23 am
(135) Karen Garner says:

Stephanie: What compounding pharmacy will duplicate Levoxyl?

Costco carries Sandoz in San Diego Ca. I don’t know where you are located.

If you go to the Tirosint Web Page, you can get a coupon for first month prescription free. It however does NOT cover Medicare subscribers. See the fine print on coupon.

May 22, 2013 at 6:24 am
(136) Karen Garner says:

What compounding pharmacy duplicates Levoxyl?

May 22, 2013 at 3:43 pm
(137) c.r. says:

@karen the compound pharmacy by me is save-rite but im in chicago and i would only use that if the generic by sandoz throws off my tsh my pharmacy osco ordered the sandoz brand for me they only had mylan but ordered it at the end of the day i had it the next morning

May 22, 2013 at 8:05 pm
(138) Karen Garner says:

c.r. I have been on the Sandoz for less than a month and it definitely does not have the side effects I had on Synthroid or Mylan. It could be more potent than what I took with the Levoxyl, but that is easy to fix. The pharmacy suggested I take half of .15 and half of .175 every day for my next course. I would be getting 15 tablets of .15 and 15 of .175.
Right now I am cutting off a tiny bit of the .175. It is working.
It has been a rough past 5 weeks.

May 23, 2013 at 8:20 am
(139) diane says:

I have been taking levoxyl for 10 years: status-post thyroidectomy due to thyroid cancer. For the last 6 months i was complaining to my doctor about weight gain, extreme fatigue, hair loss etc..; classic hypo symptoms. To months ago my blood work went crazy…extreme hypothyroidism and my cholesterol raised 150 points in 1 month. ( a side effect of hypothyroidism). Could it be my thyroid pills haven’t been working. Just found out about the recall thru the pharmacy..switched to synthroid. I thought you were never supposed to change your thyroid meds. No call from dr. This is being handled very poorly. Thyroid meds are the only thing that suppress thyroid cancer. If this had been a blood pressure med, cholesterol med or viagra it would have been all over the news. Class-action suit coming?

May 23, 2013 at 12:51 pm
(140) toni says:

Diane, I was also wondering if the Levoxyl wasn’t working as I am also experiencing hair loss, dry skin, some fatigue. Still Levoxyl was the only med that worked for 15 years with 5mcg of Cytomel…tried them all. Maybe something else will work. Will see results of recent blood work soon.

May 23, 2013 at 3:03 pm
(141) Kim says:

I started on Nature Throid today, hopefully I will do okay on it. My last script of Levoxyl I’m pretty sure was not working. I heard after Pfizer moved production from King in St. Pete to TN they tried to “reformulate” the product and had a problem with both odor and the Levoxyl not being effective. I had told my husband for the past month I did not believe it was working. I think because it is a type of hormone, if it is not working it gets the other hormones out of wack because I’ve felt anxiety and a little emotional as other people have mentioned. Shame on Pfizer. I hope to have good success with Nature Throid.

May 23, 2013 at 4:03 pm
(142) Karen says:

Kim, Toni, and Diane: By last fall my Levoxyl was not working. My TSH crept up to more than 10 on same dose and delivery.

I learned they reformulated Levoxyl in Aug to be more quick action and if you were putting it under your tongue it would not work. They should have published this reformulation with prescriptions and they did not.
This is where I think there will be legal action justified. If there is another issue, I have yet to hear about it. I think more will come out on this issue later. A good Web Site to check is Mary Shoman, author of this forum. She has many other Internet sites with great info on thyroid issues.

I have read that Nature Throid is free from allergic additives and Westhroid-P(same company) is pure. Sandoz is very close to Levoxyl in formula and additives. Only has two additional additives to what Levoxyl has and they should be safe. It is so individual a matter. Some people do well on one brand, and poorly on another.

May 25, 2013 at 10:45 am
(143) Karen Garner says:

Hmmmm…what a surprise for products Nature Throid and Westhroid advertised as being non allergic and or pure.

Nature Throid’s inactive ingredients(from nature-throid.com web site) are : Colloidal Silicon Dioxide, Dicalcium Phosphate, Lactose Monohydrate, Magnesium Stearate, Microcystalline Cellulose, Croscarmellose Sodium, Stearic Acid, Opadry II 85F1931 6 (color) clear. Interesting to see three of those ingredients were also in Levoxyl. (Incredients 4, 5, and 6).

Westhroid, made by the same company, also contains porcine thyroid powder, and inactive ingredients are: inulin, medium chain triglycerides, and lactose monohydrate per westhroidp.com web site.

Tirosint with only gelatin, glycerine and water evaluates out as the MOST pure synthetic product in my book. Any comments? Gelatin and glycerin are potent antiinflammatory additives, but in minimum doses in capsule should be OK. One can still turn to a compounding pharmacy such as Womens International Pharmacy 1-800-279-5708 and get the T4 in any choice of about 20 oils, including olice, canola, apricot, Vit E and more.

My many weeks of reseach are complete. Good luck to all of you out there.

May 26, 2013 at 8:44 pm
(144) Roxanna says:

I was taking Levoxyl for 12 years and I have never switched. I started on Synthroid with the same 100mcg dose and I feel so awful! I am having heart palpitations, I feel sweaty off and on, anxious, I have not slept in over a week and feel like I am in some sort of a dream state. I am frightened to take anymore. My husband and I was in the grocery store and I had to walk out to the car because of palpitations and just an overall ill feeling and headache.

May 28, 2013 at 2:37 am
(145) Tom S says:

Seems clear to me that compounding is the way to go here…I think. Anyway: I just started on Mylan after 4 years on Levoxyl. What can I expect w/r/t absorption? Is it okay to take it an hour before breakfast/coffee?

May 28, 2013 at 11:22 am
(146) Karen Garner says:

To Stephanie:

May 28, 2013 at 11:23 am
(147) Karen Garner says:

To Stephanie:

Where do you get your formula that copies Levoxyl?

May 28, 2013 at 5:16 pm
(148) Linda S. says:

Thank you, Karen for your expertise and comments. You know a LOT about the fillers of these drugs we must take. For ten years I have been on most of these drugs you mentioned without getting my symptoms (pains and muscle spasms in my legs and feet) resolved and quality of life back. I am currently on Tirosint and time-release T3 but not doing well. Does anybody know a good MD in the Los Angeles, CA area who uses T3 as well as T4? If you are still a practicing MD, I would drive down to SD. Thanks for the information on WIP compounding T4 and Sandoz brand Levothyroxine.

May 29, 2013 at 2:05 am
(149) Nina says:

Like many others here, I was on Levoxyl happily for 10 years. I just had to switch to Synthroid 100s, and I have to agree with the person who said they feel like they are in a dream state. I can’t say that I feel any more or less hypothyroid on Synthroid, just weird. I’m not allergic to any of the additives that I know of, and have never reacted to any medication in the past (except statins, which I can’t take at all, ANY of them). So, anyone else feel sort of detached on Synthroid, maybe with slight vertigo/dizziness?

May 29, 2013 at 2:03 pm
(150) Meredith says:

I too had to switch from levoxyl to (mylan) levothyroxine last month when I attempted to refill my rx….have noticed unwanted side effects starting to creep up on me, fogginess, forgetfulness hot flashes & depression being the worst of them…I am so frustrated!
I am thankful to Karen Garner and all of your comments on this site b/c I am going to see if I can switch to Sandoz. Fingers crossed it will be my silver bullet.
It really is a shame, hope everyone finds the right meds for them!

May 29, 2013 at 5:00 pm
(151) Lynne says:

I agree 100 % with Colleen Dziachan’s comment! It’s all about the money and profit with these drug companies. I’ve been unemployed and uninsured for 2 months and was worried about refilling my prescription in a couple of months. Now it looks like I have even more to be worried about! God help us all.

May 30, 2013 at 1:11 pm
(152) Lorrie says:

My insurance wants to charge $600 for a 90 day supply of Tirosint. $60 for Synthroid, 10.05 for the generic. I was paying 45 for the Levoxyl.

The insurance company practically forces us to order through their online pharmacy for maintenance drugs

May 31, 2013 at 4:19 am
(153) Shirley says:

I agree that Synthroid is one of the toughest forms of synthetic thyroid medicine to take. I have had thyroid disease for 35 years. Synthroid was the first thyroid supplemental medicine that I was prescribed. Three weeks later I was regularly experiencing stomach aches, diarrhea and mental fogginess. Upon researching the drug, I learned that lactose is in Synthroid. I am lactose intolerant. Over the years, the manufacturers of this medication were that many patients could not tolerate the lactose in Synthroid. However, the manufacturers have REFUSED to remove the lactose in the medication. Why? Probably because lactose is a cheap binding agent. The health care industry first goal is PROFIT, not patient care. Seven years ago, I was switched to Levoxyl. I have done well on Levoxyl. However, late last year, I suddenly became hypothyroid. I am now wondering if my sudden hypothyroidism was due to the “reformulation” of Levoxyl. Nevertheless,Levoxyl has worked well for me. I hope that this medicine will be back on the market soon. Like many of you, I think that it is a load of crap that it will take until 2014 or 2015 to bring Levoxyl back to the market! Let’s pray and advocate.

May 31, 2013 at 4:39 pm
(154) Jennifer says:

These comments are truly horrifying, but I find some comfort knowing that I’m not the only one suffering. I, too, only found out about the recall when I tried to refill my Levoxyl prescription. I was on Levoxyl 88 MCG and was doing beautifully on it for a few years now. My endocrinologist switched me over to Synthroid 88 MCG. Both his office and the pharmacy said that Levoxyl and Synthroid are the “same thing” – say what??? Within 2 weeks of taking Synthroid, I awoke one night with bizarre panic attack-like symptoms. It was terrifying. My PCP said I, in fact, had a panic attack. I was suspicious so went to see my endocrinologist. He tested my hormone levels, and my TSH was on the lower end of the normal range. He adjusted the Synthroid to 75 MCG. It’s been about 4 weeks since the I started taking the lower dose. I am feeling absolutely miserable. I cannot sleep at night, always feeling like my heart is going to beat right through my chest! That same chest-heaviness feeling persists throughout the day. I’ve tried a few sleeping pills to varying effects. Sometimes, all you want is a good night’s rest. My PCP did an EKG that came out clear yesterday. She now suspects that the thryoid medicine is to blame and doesn’t think I had a panic attack after all. My endocrinologist, as smart and well-known as he is, has the worst bedside manner ever. He insists that Synthroid is “fine” so I doubt he’ll agree to prescribe anything else. Oh Pfizer, please please please issue Levoxyl before 2014. Sorry for the rant, but if you’re reading this, you can likely empathize. I wish the best for all of you. If we need to take action, we must. We are our own best advocates when it comes to our personal health.

May 31, 2013 at 7:35 pm
(155) Karen Garner says:

I have gone through a very difficult time since Levoxyl was taken off the market. I cannot tolerat Synthroid with Providone(iodine). I cannot tolerate Mylan with two cancer causing fillers and many more. I can’t tolerat Armour(full of additives). Nature Thyroid is full of additives. I have noticed a very increasing heartbeat on Sandoz. I cannot tolerate Tirosint due to the antiinflammatory additives glycerin and gelatin.

My primary did not know anything about thyroid meds. He told me “Just tell ME what you want and I will write a script”.

I was despondent. I could not get an endo apt until Aug 23!

I have posted most of my research information, but this is the best news of all. I found a compounding pharmacy in San Diego that will compound synthetic Levothyroxine in microcrystilline cellulose as filler and nothing else. The name is Good Pharma, the number is 858-488-9000. The absolute incredible news is that the price is only $20.00 or so for 150-175 mcg in a 30 day supply. It requires a prescription.

For more info in your area outside of San Diego , please check the Internet for “Compounding Pharmacies”. You will get a national toll free number. You will be asked for your zip code and they will give you the names and numbers of compounding pharmacies in your area.
Please keep posted on this forum with your results and Good Luck!
I believe Good Pharma in San Diego will ship to you anywhere in the country. Your doctor could call your prescription in to them.

Karen

June 1, 2013 at 10:55 am
(156) DiSpy says:

I am Celiac and Lactose Intolerant and also allergic to Legumes (nuts).

I had a hard time trying to work with my doctor and local pharmacy to find something that I could safely take. It took weeks of making phone calls and getting nowhere for my doctor to finally tell me that it was up to me to go find something and let them know when I did.

I eventually found a compounding place that would make me a generic Levothyroxine using only THREE ingredients. Two of which were silicone and Olive Oil as fillers. (Note: The capsules often used in compounding contain Gluten, so we went with a suspension form. However, the standard filler for suspension (liquid) uses nut-based oil. So always ask what fillers the compounding pharmacy is using before they make it, and let them know about ALL of your allergies.)

The main fight I have on my hands now is trying to get my healthcare to pay for it (or at least part of it). They keep telling me they will cover 50% of the custom compounding, but when the pharmacist calls it in they keep denying him outright. It’s to the point where he’s spent hours on the phone with them (as have I), and he’s out of patience. I wound up just paying for a month’s supply out of pocket, while we try and work it all out.

I started on the medication TODAY, and will update with how it goes.

(PS- My concern is that i’m only treating the T4 this way, and not the T3.)

June 2, 2013 at 10:25 pm
(157) Lisa says:

Just started taking Levothyroxine instead of the Levoxyl that I have been on for the past 11 years. I had my thyroid removed so my life depends on this. The Levothyroxine caused tightness and breathing difficulites and horeness with a sore throat. Any recommendations on what I should try next?? Does anyone know if you can you get Levoxyl in Canada?

June 3, 2013 at 6:42 pm
(158) lyn says:

If we’re getting down to the nitty gritty: One of the ingredients in Tirosint is gelatin – Research gelatin & you will find it could have a potential for Mad Cow issues – Research where most of the gelatin in the US comes from – BSE is known in those countries…Thanks for everything BigObamaPharma.

June 3, 2013 at 9:52 pm
(159) Paula says:

Hi to all and a big thanks for the info reLevoxyl …I too had my thyroid radioactively vanished. A year and 1/2 ago…Not a happy camper…tried just one other drug thought I would never be normal again….until Levoxyl helped a lot but still not enough….now this ….and being in my 70′s doesn’t help. This is the first time I have commented on a subject on the net,,We all try to share, learn, help and understand ….. this site was a blessing..will call compound pharmacy tomorrow for HELP,
Stay well. Paula

June 3, 2013 at 9:55 pm
(160) Pam says:

I am so totally frustrated. I have been on Levoxyl for over 10 years after being diagnosed with Graves Disease and having the radiation treatment. FINALLY after so long of trying to get my body regulated , get energy, and lose weight, I was able to shed some pounds and feel “stable” and more normal than I had in a long time. My levels have been staying consistently normal and I’ve even been able to keep my weight stable, blood pressure, heart and energy levels at a good place. Now I have to try Synthroid with only a few more Levoxyl pills left. I am so worried that I am going to have to face all of the same misery that I had before in trying to regulate my thyroid levels and all of the effects that go along with it. I have been feeling like I don’t even have a thyroid issue with the Levoxyl having worked so well. Now just because these drug companies have to play games who knows what effects I may have from the Synthroid. I had a pharmacist tell me it is not advisable to switch medications if you do not have to. Well, who has a choice when you can’t get the medication you need. I think it is just terrible how the pharmacies are playing with the health of thyroid patients who depend on the medication. Not to mention how hard it is when you are working to have to constantly run back and forth for blood work when you are trying to regulate your levels. I’m worried about what this outcome may be. My Endo told me that Synthroid and Levoxyl work the same way. We will see. I hope I make it to 2014 when Levoxyl hopefully is once again available.

June 4, 2013 at 12:27 pm
(161) Janet says:

I also had to switch from Levoxyl to Synthoid for my Hashimoto’s and like someone else mentioned here, I’ve also had a sore throat ever since I switched over. At first, I thought they were unrelated. I would treat my sore throat with over the counter meds or Milk Thistle, and other natural remedies, and it would go away for a while, but it always comes back. My throat always feels like a sore throat is coming on. I would wake up in the morning feeling fine, then as soon as I take the Synthoid, my throat would feel funny. I started to suspect the Synthoid, and seeing how someone else has had the same problem, I am now going to ask my doctor to see if he can switch me to something else.

June 5, 2013 at 4:09 pm
(162) Colleen says:

I have Hashimoto’s disesse and my doctor referred me to an endocrinologist 16 years ago. She took me off Synthroid and said for what I have I would do better with Levoxyl. Unfortunately my current doctor and subsequent doctors have only ran the TSH on me and won’t consider any of the natural forms of thyroid meds. They can’t think outside the box and listen to the drug company cabal.

Recent TSH shows I’m on the low end of the normal range at .137 mcg and I said no wonder I feel like I have mono! They have switched me to Levothyroxine’s .112 mcg’s.

June 6, 2013 at 1:42 am
(163) Kelly says:

I am so mad! I went to refill my 90 day Rx of levoxyl only to be handed a substitute! I had my thyroid removed 13 years ago and it is life or death for me to be on this brand! I have tried everything but the natural thyroid that they used in the 1950′s and that is what my endo is having me start this week. I really do not want to take a pigs hormone! Who wants to sue?! This is so unfair to mess with our Heath and lives!

June 6, 2013 at 6:47 pm
(164) Rita says:

Second recall on the thyroid drug Levoxyl ,was taken off the market because of inconsistency in the doses of this medication.
First recall when opening the container there was a bad smell.
Will not be back on the market before 2014 they need to get FDA approval again.

June 7, 2013 at 2:28 pm
(165) teri says:

Iam totally scared now. My daughter and my granddaughter had to change meds from levoxyl to levothyroxine. My daughter is very ill the levoxyl was the only thing she could take. I was diagnosed with cancer of my thyroid last week. I am supposed to have my thyroid removed. After reading all these post I don’t want it out now. I can not believe in our world this actually is happening. People are going to die from this doesn’t Obama care? I have to see my surgeon on Monday to schedule my surgery but I will be telling him Im not going to do it and direct him to this site. My Endo doctor wants to put me on synthroid I have PVC’S and anxiety and panic attacks. I don’t do well on meds and I don’t see a way out. My stomach is in such turmoil knowing how everyone is suffering . Somebody needs to get this in the news someone needs to do something. I tried and no one returns my calls. All I can do is pray and hope god hears me. Goodluck to all of us.

June 8, 2013 at 2:29 am
(166) Karen Garner says:

To all:

I highly recommend what has successfully worked for me: compounded prescription for Levothyroxine in microcrystalline cellulose and nothing else. Available at Good Pharma in San Diego, 858-488-9000. These are hand done compounded capsules and it contains a POWDER. No oil. Nothing goes through a machine. Great price of approx $26.00 plus shipping. Check your area for compounding pharmacies and call to see if they do the same compound. The capsule is a thin gelatin you can separate and you can put the powder in water to drink if you cannot tolerate gelatin which is a potent antiinflammatory.

Note: some insurance companies will cover compounded prescriptions when you need a dose that is NOT available commercially. Most Levythyroxine, synthetic T4, including Synthroid, Mylan T4, Sandoz T4, and Tirosint come in doses up to 150 mcg(that is as high as Tirosint goes) and then others jump from 150 mcg to 175 mcg. I needed 162 mcg and therefore the insurance is covering the cost.

Note: All the synthetic substitues for Levoxyl are called Levothyroxine.
Synthroid is a brand name. Mylan and Sandoz are manufacture names. Tirosint is the newer synthetic. It could be good for many as it contains only gelatin, water and glycerin. Gel and gly are potent antiinflammatory.

ALL synthetic levothyroxines are available in 50 mcg non dye tabs.
The dyes added reference different doses and are massive in most cases. That is the first thing I would eliminate if I had a problem with any substitute.

The most PURE dessicated thyroid is Westhroid-P . Check out Drugtalk.com thyroid supplements for additives in each.

Most updated labs use .3 to 3.0 for normal spread of TSH.

This is a wonderful web site. Great comments and references.

June 10, 2013 at 9:38 pm
(167) Mary Parks says:

I propose a class action suit against Pfizer for risking people’s health and lives by abruptly stopping levoxyl for no good reason.

June 11, 2013 at 11:40 am
(168) Mary says:

HI EVERYBODY WHO IS LOOKING FOR LAVOXYL. PLEASE LOOK INTO COMPOUNDING PHARMACIES. THEY CAN MAKE YOUR MEDICATION FOR YOU. IT WILL BE CONSISTANT AND DOES NOT HAVE TO INCLUDE ANY FILLERS THAT YOU ARE SENSITIVE TO.

June 11, 2013 at 3:01 pm
(169) tj says:

Levoxyl, Synthroid, Unithroid… are all generic forms of the same drug, however, the manufacturers are different and THEY ARE NOT EQUIVILENT!! Anyone, like myself, who has to change, make sure you pay attention and tell your doc at the first sign of anything different so that the meds can be adjusted properly. Pharmacists and others will tell you they are generics of each other. Trust me, been there, they are not easily substituted one-for-one.

June 11, 2013 at 6:51 pm
(170) Jennifer says:

I just wanted to let everyone know what’s been working for me.. After brief trials on Synthroid and Mylan brand, I have switched to Tirosint and am doing good. Synthroid and the Mylan generic we’re HORRIBLE! I haven’t been having any of the awful side effects on Tirosint so far. I think this might be a winner ( fingers crossed! ) After battling with this recall for the past couple months and putting my body through hell, I finally feel like there might be some hope of feeling normal again! 😊

June 11, 2013 at 10:32 pm
(171) Romayn says:

Want to cry right now. I’m leaving the country for two weeks so I have no choice but to agree to the generic and I’m afraid of the migraines I have when on this generic stuff. Feel like my vacation is doomed not to mention my health.

June 13, 2013 at 11:45 am
(172) Janine says:

I “stumbled” upon this website and WOW I am glad I did. I sit here looking through my “stoned” eyes, my head is dizzy, I have head pressure, ringing in my ears, heart pounding in my head and neck, ears crackling and feeling full of water at times, ear pain and my eyes are like looking through someone elses eyes.. these aren’t my eyes… my vision is off.

I was on Levoxyl… started noticing I didn’t feel well about half into my last prescription of it… then, the recall. I wondered if I didn’t feel well FROM the Levoxyl…. maybe the meds were bad? Maybe something changed with that particular med? LONG story short, I am sick as He**…..had an MRI, and MRA, Lyme tests, Anti-anxiety meds, Muscle relaxers, thorough eye exam, 7 doctor visits, Clonopin, and HERE I SIT!! Sick, sick sick. STONED out of my mind.. dizzy.. feel like the lights are SO bright I need sunglasses 24/7, headaches in the back of my head, I just feel STONED. I can function, but it’s like an acid trip or something… it’s NOT good.

June 13, 2013 at 11:47 am
(173) Janine says:

Part 2: Yes, everyone thinks I am nuts… I am have been pretending I am OKAY for just about 3 MONTHS. THREE months is a LONG time when you are stoned 24/7. It varies, the degree of highness, but it has not gone away for ONE minute. I was put on Synthroid after the Levoxyl… and downhill it went, FAST. I had the bad heart palps.. pressure so bad in my head at times I was SURE I was going to have a stroke.. brain fog… etc. I stopped the Synthroid after about 4 weeks. I went to my Endo dr. and couldn’t remember how to GET THERE. I cried in her office and told her I was NOT well. She was very sympathetic, which she usually isn’t. She said she knew I did well on Levoxyl for 1.5 years, so something is not right. She then switched me to Levothyroxine….

She said to try that for a few weeks.. I should know in about two weeks if that is good for me. Well it’s been 21 days today and I am not better. The only difference is the heart palpitations.. they have stopped. I am totally whacked out. I can function, because I have to, but I am NOT OKAY.

Doc said she could try me on Armour if Levothyroxine doesn’t work for me, but she said I may have trouble for a while since it’s “natural” and not in the same family of meds , meaning it’s not synthetic. I said lets try the Levothyroxine first before we make me even sicker.

So, here I sit… just sick as a dog. I guess because you don’t look sick, people don’t believe you?? No one would know how truly sick I feel to just stop and talk to me. I feel drunk.

June 13, 2013 at 11:48 am
(174) Janine says:

Part 3:Oh, by the way, I don’t eat ANY corn at all.. or anything made from corn as I get SICK from it. I mean I can take aspirin here or there, but I would not dream of taking it every day.. I know what tiny amounts I can get away with . I hear that Levoxyl had few fillers… and Synthroid is loaded with corn. Perhaps I am stoned on CORN??!!

I was wondering if I should ask her to try Tirosint since it has few ingredients…. I know gelatin is usually corn based, but who knows, it MAY work… one or two fillers is better than 9. I can always have it compounded I guess??

SO if it’s NOT my meds, then I am just losing my mind. …I know something is VERY wrong. You aren’t high and blind 24 hours a day for NO reason. When something is messing with your head and your eyes, it’s NO joke.

Should I go for the Tirosint or go for the Armour? I like little changes.. I think Armour might be too much for me … maybe try Tirosint and go from there??

I feel sorry for everyone who has to be controlled by meds. I had NO idea how sick you can become with this thyroid business. I had mine removed from a teeny nodule that had papillary cells in it… I was told it would be a “piece of cake” from my regular doc… She had “real” cancer.. breast cancer.. so I guess she thought mine was a joke. She’s not very sympathetic towards me anymore.

I also have a lot of ear issues with all this.. ear fullness, crackling, pain, etc…. they are making me have a VNG test that checks your inner ear for trouble… I wouldn’t say I have vertigo, I am not having trouble walking or feel like the room is spinning, I just feel down right DRUNK and lightheaded.. no spinning or falling.
I am scheduled for a brain stem response test next Friday, a MRI of my inner ears AND a VNG on July 9. I hope something shows up.. not that I want something but I need answers!!! If the are all negative I don’t know WHAT happens then… it’s got to be my meds???

June 14, 2013 at 8:38 am
(175) Karen Garner says:

Janine: Please see my post 84, and check out the ingredients of the various thyroid meds.

June 14, 2013 at 12:52 pm
(176) Jeanne says:

Question for Karen Garner. How are you doing on the compound meds from Good Pharma? I have been going thru a horrible time since the recall. Been on Westhroid P and now Tirosint and can’t handle the heart palps, weakness and brain fog. Please let me know.

June 14, 2013 at 7:17 pm
(177) c.r. says:

@ karen hi hun how are you doing? getting ready to start the levo by sandoz i did further investigate the 2 additional ingredients in the generic by sandoz and one is just a coating for the pill and the other is an absorbent …i think alot of people are assuming theres only one brand of generic ….. levothyroxine by sandoz is the closest anyone will get to levoxyl trying all these different meds is crazy none of them come close to the sandoz brand thats probally why everyones having such a hard time……please register at levoxyl.com the more people who register maybe the quicker to get levoxyl back on the market…..im glad youre doing the compounding …. if anyone was doing well on levoxyl they should know the generic by sandoz not mylan is the closet youre gonna get then any other thyroid med on the market…now about the iodine ,povidone what is now making sense to me every time i needed to have a cat scan or x-ray using dye i always had a reaction felt like my throat was closing and i couldnt breathe now it all makes sense the dye has iodine,,,,,,armour also uses an ingredient simliar to the povidone so if youre having a reaction to the povidone which is the iodine stay away from armour as well we already know synthroid will straight up run youre heart crazy and now im living with permanent arrythmias because of that freakin synthroid …..im not understanding why all these people are trying so many different thyroid meds when none of them come close to levoxyls ingredients way to many fillers and dyes some dont even have any of the inactive ingredients that levoxyl does…so for anybody reading this besides karen…if levoxyl was working for you levothyroxine by sandoz is the closest you will get to levoxyl i think both of our research is complete hun thanks

June 15, 2013 at 10:43 am
(178) DiSpy says:

UPDATE: The compounding was making me sick to my stomach, i’ve stopped taking it. (The all-day nausea and diarrhea were not worth it.) I’m back to the drawing board to try and find something that is lactose and legume free and safe for celiacs. (Compounding pharmacy said they have no alternative for the active ingredient, and are sure the two inactive ones weren’t the cause.)

Going to suffer the hypothyroid symptoms until my doctors appointment.

Will update again when I find something else to try.

June 18, 2013 at 1:21 am
(179) Mary in N CAL says:

I don’t beleive this has anything to do with Obamacare. C’mon, really?
I had been taking Levoxyl for 4 yrs as prescribed by an Endo. HIs rationale was get “the same thing every time”. Then you could compare apples with apples. He said that Levoxyl had fewer side effects.
Perhaps I agree? I don’t know, but for me, my hair has not stopped falling out and I still had low energy even with a T-3 supp.
I had read about the shortage in Feb and knew that I would have to change drugs anyway. I had previously been told that I had not given it a chance to work (dx 5/09-TSH 122) Because I continued to have the hair loss, as well as brain fog and fatigue, I didn’t feel like I had anything to lose and asked for Armour.
I am very happy with Armour. My “piggy skin” turned pink within 24 hrs and I had energy. Hallelujah! I am doing much better!!!! Pfizer can keep their levoxyl. My Armour costs me $14.15 per month!
The two different drugs were costing me almost $200 w/o ins. Yeah right…

June 18, 2013 at 5:58 am
(180) cabro says:

Be careful with Tirosint. I actually had a bad side effect – terrible burning in the gut. I was so miserable, I decided to try one Sunday with my Levoxyl. NO side effects that day. Back to Tirosint on Monday, and bad side effects resumed on Tuesday. I repeated the “experiment” with the same results. I finally told my doctor I refused to take it anymore. Of course it ran my TSH down into hyper-hell, .017 from a previous .262. And that was on a reduced dose. I know of another patient who had the same side effect. Clearly, Tirosint is not for everybody. Beware. I wish it had worked, because now I am living with side effects from having to take Synthroid. This all just makes me FURIOUS.

June 18, 2013 at 10:17 am
(181) Karen Garner says:

c.r. I am still looking for the perfect replacement to Levoxyl. And yes, definitely register with the Levoxyl Web Site or better yet CALL them at 1-800-438-1985. They will pass your info on symptoms to the various replacements you have tried to the manufacturers of each. And urgently request they get the Levoxyl with only the three original ingredients back on the market. A Mylan rep called me back just last week. Mylan had the most additives including butylatedhydroxyanisol(cancer causing) and mannito(a potent diuretic). I had the worse symptoms on Mylan. But I knwos ome who do well on it. Different folks different strokes!

Sandoz is difinitely the closest commercial replacement to Levoxyl in regards to inactive ingredients. I tried it, did fairly well on it as far as T4 replacement and negative reactions. However, I would like to stay away from as many inactive ingredients as possible, expecially magnesium stearate, so I started a compounded synthetic T4 with only microcrystalline cellulose in it. This was from Good Pharma in San Diego. There is 125 mg of this inactive ingredient in that one, and as it is a potent antiflammatory I was suffering some vestibular symptoms on it due to my gentamicin ototoxic damage of many years ago. After a month on that, I am calmly going to try another compounded formula from San Diego Compounding Pharmacy with only acidophillis as inactive ingredient. Just trying to refine my choice as every day I get more information. I definitely could not tolerate Synthroid, Mylan, Armour, Nature throid due to inactive ingredients. There is another local compounding pharmacy that uses only riboflavin(Vitamin B). These are getting pricey, the acidophillis is $44.00 the ribovlafin added is $55.00 each per 30 day supply but any price for good health.

Keep us posted on how well you do on Sandoz.

June 18, 2013 at 10:58 pm
(182) c.r. says:

@ karen …. levothroid,synthroid,and mylan, all have povidone thats probally why youre not doing well on them and armour has the same hypersensitivity as povidone……not too many choices left…. magnesium stearate is one of the inactive in levoxyl so im not sure why it would be bothering you now if you tolerated levoxyl in the past…..im starting sandoz tomorrow it is the closest to levoxyl .. im thinking i should be okay ill let you know it only has 4 inactive ingredients and levoxyl has 3 ….good luck hun ill talk to you soon !!!

June 19, 2013 at 12:39 pm
(183) Karen Garner says:

c.r. I did not have a reaction to magnesium stearate, as you mentioned it was in Levoxyl. Now that I am in motion finding new products, I would prefer to find one without the mag stearate.
I am coping with the compounded T4 from Good Pharma. I learned yesterday the SD Compounding Pharmacy does not use anything but microcrystalline celluse as filler, so there goes the acidophillis idea.
The tech apologized and said she had misinformed me about the acidophillis.

I checked out a Canadian Pharmacy, canadianpharmacylink.com, and they had the levoxyl available per site. I ordered it, and they telephoned me this morning that it too was off the market in Canada. Not surprized.
Levoxyl is also made in India under a different name, have not checked that out. I have a friend in Germany who takes thyroid, I am calling her today to see what is available there. If I could just find one with the same inactive ingredients as Levoxyl, I would be thrilled. I am not ready to give up.

You can contact me further on Facebook if you like. I can send you a message with my e mail address on it, then we can communicate more privately that way. I am under “Karen Williams, San Diego CA”.
Garner is a middle name.

Hope you do well on Sandoz.

June 19, 2013 at 4:23 pm
(184) Jeanne says:

To Karen Garner and C.R., Please please do not leave this forum!! I have been following your posts and they are very informative. Both of you have been a great help. I just took myself off Tirosint for the past three days. I had horrible reactions. I am now going to start the Sandoz tomorrow. C.R. I want to hear how you are doing on it.

June 19, 2013 at 6:22 pm
(185) c.r. says:

@jeanne……no problem hun karen is a doctor and im a rehabilitation nurse for 22 years so we may have a little bit more info then the rest i started sandoz today im doing just fine no heart palps ill do blood work in 6 weeks to check my TSH levels but so far so good if you were reading our posts then you know there are quite a few varieties of levothyroxine the one by sandoz is the closest you will get to levoxyl the only additional ingredient in the brand by sandoz is a a coating for the pill to make it more absorbent but we find that in tylenol,advil,aspirin pretty much all prescript meds have that additional ingredient if youre having problems with the other meds sandoz is the way to go if you wanted something close to levoxyl i have hashimotos so it limits alternatives for me anybody hypothyroid should stay away from the inactive ingredient povidone which is iodine it could stimulate the thyroid enough to grow a goiter thats what happened to me when i was on synthroid…stay away from synthroid.levothroid or the generic by mylan they all have povidine and you make get fast hearthearts and palps from it tirosint is very natural and there have been absorbent issues with tirosint you absorb too much of it…..ill keep you informed but i think im gonna be just fine i was so scared after being on levoxyl for 22 years for now im good its only been one day but i will let you know try sandoz and let me know how it works for you

June 19, 2013 at 6:40 pm
(186) c.r. says:

@ karen further investigating armour,,,, opadry white is the inactive ingredient in armour you need to stay away from it has the property for hypersensitivity just like povidone even though its natural it is a T3/T4 also cytomel is T3…. levoxyl is T4 …..unithroid and thyrolar are also loaded with inactive ingredients as well if youre going to still compound hun use the same ingredients as levoxyl do not have them add oil or water or glycerin even though they may sound natural and unharmful actually when compounding they can also upset youre stomach try sticking with the levoxyls active T4 and inactive ingredients you should be o.k……..ive been calling the fda as well no remarketing date insight…im thinking im gonna be ok took the sandoz this morning no heart palps …..ill check the tsh in 6 weeks that will be the only test to let you know if the med is working or not wishing you well doc couldnt of done it without youre help and if i could help someone else with what we have been researching im grateful for that as well talk to you soon

June 19, 2013 at 8:19 pm
(187) cabro says:

@c.r. – Please let us know how the Sandoz levo works for you. I can’t handle the sweats and hot flashes, hair loss, and muscle pain I am getting from Synthroid. I need to do something, because my quality of life is awful (again). A year of this is just not going to happen.

June 19, 2013 at 8:39 pm
(188) cabro says:

Oh, and here are the side effects from acacia, the first filler in Synthroid: “Acacia seems to be safe for most adults. It can cause gas, bloating, nausea, and loose stools.” (WebMD) Also, I am perplexed by the presence of povidone, which is primarily an iodine antiseptic for topical use!

June 20, 2013 at 12:58 am
(189) Mary Seney says:

To: Karen Garner and C.R.
I was not able to get my levoxly .125mcg refilled in march and was put on generic levothryroxine manufactured by Lannett and have been going down hill since then…have gained 10 pounds in 2 months, heart palps, water retention, extreme sensitivity to sunlight, headaches every day, exhaustion, jitters, nausea. Had my levels checked and my general physician said I am on the lower end and reduced my prescription to 100 mcg which doesn’t make sense…and now I am cold constantly and also constipation. I am getting worse! I have been on Levoxly .125 for 6 years and felt fantastic…now all my symptoms have returned and making hard for me to work the 2 jobs I have. This is a living nightmare! I am calling my physician tomorrow to write a new script for Sandoz synthetic levothyroxine…but not sure if I should ask for .125 on this? Will try this and if it works…great…if not maybe will try the compound pharmacy…any suggestions…I welcome them..

June 20, 2013 at 7:54 am
(190) Ann lang says:

This forum and website have been a godsend for me! Fighting hoshi my whole life.also have hypoglycemia, low blood pressure,hair loss, dry skin always cold, could not breastfeed-NO milk, severe constipation.

Have been on Levoxyl for about 10 yrs, when put on generic my period stopped the first day I opened the bottle, when the put me back on brand name 5 days later, my period came back 45 min after taking pill!!!

Horrified that Levoxyl can’t be had. Begged doctor to try Tirosent, although more expensive I liked the fact that its a gel form and more easily absorbed. Getting worried though as constipation has returned

June 20, 2013 at 9:52 am
(191) Karen Garner says:

c.r. Tried Tirosint. They do not make a dose more than 150 mcg, but the T4 worked well in me. The gelatin and glycerin are both anti inflammatory so those bothered me. I did not get an upset stomach but they could cause that according to my research.

I did not know about the dye issue in Armour, but tried it and felt awful on it. Nature Thyroid is full of additives. Westhroid P has inulin which should not be harmful but also has lactate. Lactate interferes with T4 absorption. As well as caffeine, soy and most crucerferous veggies.
Good Web Site to check out “What foods/meds interfere with thyroid absorption”.

Wish this site had a “spell check”.

I am blessed to have a very kind and well informed pharmacist through Good Pharma in San Diego. I am now taking their compounded levothyroxine in a filler of microcrystalline cellulose.
This filler should work for most. It does not interfere with the T4, and absorbs quickly into the body . It is a high dose of 125 mg(Levoxyl had .18 mg) and it is potent antiinflammatory so I am having inner ear issues on it, nothing I cannot handle but very bothersome for 4-6 hours after taking capsule. I asked this pharmacist yesterday if we could switch filler to Vitamin C powder USP and he said YES. Vit C does NOT interfere in any way with T 4. I have been taking the Vit C powder USP(pharmaceutical approved and good for compounding) for 10 years. What they will use is exactly the same powder I have been getting from the Swanson Vitamin Company. So, I am arranging for the switch on that filler today . We will see. And I will report back.

To All: Please check out the Web Sites for Mary Shomon. She has a lot of worthwhile information on thyroid.

June 20, 2013 at 11:13 am
(192) c.r. says:

@cabro please get off that synthroid a.s.a.p. i was on synthroid and it grew a big multinodule goiter in my neck which i had to have surgery to remove it not to mention i now am living with permanent irregular heartbeats and tachardia from that synthroid….synthroid,levothroid,and levothyroxine by mylan all have povidone which is iodine and actually can stimulate the thyroid instead of suppressing it try the levothyroxine by sandoz it is the closest to levoxyl i am doing great on it no side effects at all its inactive ingredients are so similiar to levoxyl ive adjusted just fine hope it works for you…good luck

June 20, 2013 at 11:17 am
(193) c.r. says:

@ mary seney hun levo by lannett has a bunch of inactive ingredients you dont need that are probally producing youre side effects try levo by sandoz its almost identical to levoxyl……and yes ask for the same dose you were taking for levoxyl …good luck

June 20, 2013 at 11:22 am
(194) c.r. says:

@ ann lang hun i have hashimotos too it is an autoimmune disease of the thyroid so yes you will feel cold and loose youre hair and have flu like symptoms it is from the disease not the meds try levothyroxine by sandoz if you tolerated levoxyl then you should be ok on sandoz generic it is very similiar to levoxyl…good luck

June 20, 2013 at 11:31 am
(195) c.r. says:

@ karen microcrystalline cellulose is one of the inactive ingredients in levoxyl so that probally why you were able to tolerate it … try to stick to the closest ingredients to levoxyl this way when you switch back if you do the transition should be symptom free ……doing great on sandoz !!!im not suprised the gelatin and glycerin bothered you even though it is a pure form there are side effects as well tirosint you have to play around with too much because of the absorbtion issue and may have to adjust the med several times why make youre body go through that…..hope you do well on the new compound if it doesnt work go back to the microcrystalline cellulose as it is an ingredient in levoxyl ……

June 20, 2013 at 12:18 pm
(196) Karen Garner says:

c.r. Glad you are doing well on Sandoz! The doses of microcrystalline cellulose in Levoxyl and my compounted script are very different. Levoxyl had .18 mg, and my new script has 125 mg. Am going through process to authorize change of filler to vit C powder USP now.

To Jeanne: We will definitely stay on this forum! The information shared here is excellent. I hope my research has benefited many others. It has been a struggle.

June 20, 2013 at 7:06 pm
(197) cabro says:

Karen: Which phone prompt should we use? I used 6 and the person was unaware but said she would pass my complaint on. I told her there are literally hundreds of posts on forums with people who are miserable on Synthroid and that a company like Pfizer has the means to end a lot of suffering sooner by getting Levoxyl back on the market a lot sooner, but ONLY IF THEY WANT TO and left it at that. I’m soooo mad. I’m sitting here having hot flash after hot flash, hair thinning and new muscle and joint pain. How sickening to look forward to a year of this.

June 20, 2013 at 11:17 pm
(198) cabro says:

c.r. – Thanks, but I don’t have a thyroid. I am a thyroid cancer survivor. I need to be on a highly consistent dose, so my doctor says “brand,” which is now Synthroid. I was on Armour before and after TT, then combo Levoxyl and Armour after RAI. My T3 never got high enough. so now I am on Cytomel and Synthroid (was Levoxyl). Tirosint was a disaster. I am going to discuss Sandoz with my excellent and open-minded endo. But I know what the statistics are and I know the percentage variances with generics. Thanks so much.

June 21, 2013 at 8:51 am
(199) Karen Garner says:

c.r. The crystalline cellulose in my compounded med is Avicel. If you check that Brand and also check out microcrystalline cellulose on the Internet you will see there have been a lot of problems with it.

I am going to have to push a bit to get my endo going on the new script. She is totally inadequate. Had no idea what inactive ingredients were in the various thyroid meds.

June 21, 2013 at 9:35 am
(200) Karen Garner says:

c.r. Please check out “Is cellulose the real problem in dessicated thyroid” on the Web. Thanks

June 21, 2013 at 1:02 pm
(201) Bob says:

The cause of the shortage of Levoxyl is that the desiccant packs made to preserve and protect the product from moisture is the problem. The desiccant packs actually exploded in the Levoxyl plant. The delay will be about a year.

In response to Amy Rose #14 With all due respect and I do respect your husbands profession greatly. I love my local firefighters and police and thank them whenever we speak! Amy you stated that “They were told that the FDA has been making demands on manufacturers, who are having to change their production, thus causing shortages.”
The FDA has not made any NEW demands on the manufacturers. The pharmaceutical manufactures were letting old practice standards expire in order to save on costs and boost their share prices. There are no demands on the manufactures to change their production, in reality it is just the opposite. The manufactures wanted to cut corners and the FDA said NO you cannot put the safety of the public at risk by trying to save a couple dollars on the production line. The FDA has stepped in to demand that the manufactures continue to follow safety standards set in place by the manufactures themselves.
I hope every body gets their prescriptions resolved as the delay looks like about a year. Good Luck to ALL!

June 21, 2013 at 8:50 pm
(202) Bonnie says:

On Levoxyl for 10 yrs. At age 58, this has been a severe blow to my body with trying other medications. All the adverse reactions and allergic responses have felt more like a torture chamber of horror within my body. I’ve tried more thyroid meds in the last two months to feel well and I haven’t felt well at all. I was only ever switched from Synthoid to Levoxyl a few yrs back and finally had a sense of wellness.

As for the Sandoz generic, I tried that and it was very strong for me, drying everything out, giving me a miagraine headache with sensitivity to light, blurred vision. Numbness in my hands and feet. Didn’t react like Levoxyl in my body at all. It’s been too much trial and error with meds to only feel worse.

I’m going to Mayo Clinic next week for an evaluation since I’ve lost over 10 lbs and have been suffering since Levoxyl has been unavailable. I hope they can help me with the medication end to feel well again. To me this is all very tragic. I pray everyday Levoxyl will by some miracle be back and available sooner then expected.

June 21, 2013 at 8:56 pm
(203) Bonnie Benner says:

On Levoxyl for 10 yrs. At age 58, this has been a severe blow to my body with trying other medications. All the adverse reactions and allergic responses have felt more like a torture chamber of horror within my body. I’ve tried more thyroid meds in the last two months to feel well and I haven’t felt well at all. I was only ever switched from Synthoid to Levoxyl a few yrs back and finally had a sense of wellness.
As for the Sandoz generic, I tried that and it was very strong for me, drying everything out, giving me a miagraine headache with sensitivity to light, blurred vision. Numbness in my hands and feet. Didn’t react like Levoxyl in my body at all. It’s been too much trial and error with meds to only feel worse.
I’m going to Mayo Clinic next week for an evaluation since I’ve lost over 10 lbs and have been suffering since Levoxyl has been unavailable. I hope they can help me with the medication end to feel well again. To me this is all very tragic. I pray everyday Levoxyl will by some miracle be back and available sooner then expected.

June 22, 2013 at 1:56 am
(204) cabro says:

Additionally, Bob, I understand that Levoxyl has been undergoing reformulation and there were inconsistencies found. That seems to have compounded the issue and further delayed the return of Levoxyl.

June 22, 2013 at 4:58 am
(205) c.r. says:

@ karen truth is even though we both are health care proffesionals we are patients ourselves as well…and me too with an inadequite endo..you would think when a doctor prescribes a patient a med they would know what is in that med their prescribing not name guessing so im not suprised alot of these people have misguided information ….synthroid does not even compare to levoxyl how everyone seems to think they are the same med just shows how ill informed they are we both know synthroid is a /t4 with 6 inactive ingredients while levoxyl is strickly t4 with only 3 inactive ingredients so why dump a med in youre body that has all those extra added fillers and dyes? its because most of us rely on what our doctors tell us to do and dont research our medication like you and i do …. if everyone would take the time and research exactly what their putting in their body and bring it to the attention of their doctor maybe they would have a better solution for an alternative medication…..this one women is saying sandoz is too strong not sure how that is since it almost duplicates levoxyls ingredients……its a simple web search to find the inactive ingredients in these meds and compare them youreselves……about the cellulose…honestly i dont think theres gonna be any filler on the market that doesnt have some type of warning or side effect thats the chance we take with synthetics…..so many of the fillers and dyes in meds today can cause allergic reactions and side effects this is why we research and form our own decision about what to put in our bodies…….good choice with the vitamin c let me know how that works…sandoz is working fine for me no reaction or side effects at all ….thank god…..

June 22, 2013 at 7:23 am
(206) pra says:

I am not happy that Levoxyl is not available and the idea to suggest I take the generic brand is offensive and troulbesome. I have taken the generic in the past and it just did not agree me as it resulted in feeling totally out of balance .
I regret ever being treated for Graves’ Disease and find myself depending on a lifelong replacement that took six years to bring my thyroid levels to a satisfactory number.
In January 2013 my levels indicated new blood work because the numbers were off again. Because of the levoxyl situation and the reason for being unable to take the generic brand, the pharmacist suggested the synthroid which costs more than the levoxyl or generic.
I am totally annoyed, to say the least, about the whole situation and am deeply concerned about my overall health in this regard.

June 22, 2013 at 2:31 pm
(207) Mary Jane says:

Thank you! Thank you! Just found this site! I have been in a panic about my stock of levoxyl running out, and am now feeling hopeful that the Sandor could work. I’ve been on levoxyl for about fifteen years and my endo helped to very carefully titrate the dose — Cannot even imagine life without this. Seems so blooming crazy!

Anyway, thank you soooo much –

June 22, 2013 at 3:58 pm
(208) Lisa says:

I had to switch to Tirosint for the obvious reason to replace Levoxyl. I used to pay $11 for 3 mo. supply of Levoxyl. Tirosint is $35 for one month! Plus Tirosint makes me tired (tiro)…maybe the name gives us a clue. I have found that it also makes me highly volatile quickly with little provocation. I am having to switch docs to try Armour. I pray that I feel better on Armour like I did on Levoxyl! Good luck to everyone who has to go through this ridiculous and incomprehensible predicament!!

June 23, 2013 at 1:53 am
(209) cabro says:

For those of us who are thyroid cancer survivors, it is important to note that generics can have wide variances in the actual amount of active ingredients. I understand up to 20% is actually allowed! Thyroid cancer patients need to be regulated very precisely, and this much variation from pill to pill or batch to batch is not acceptable. Imagine your 90-day refill was from a batch that was on the low side of the active ingredient. Then the next 90-day batch is on the high side. That could be a very significant swing in actual dosing of the active ingredient. Additionally, my body responds to small changes in a somewhat dramatic way, so I suspect that my endo will not allow me to try a generic. Do your research before you switch. And if your doctor is on top of things, ask for his/her advice.

June 23, 2013 at 6:28 pm
(210) Karen Garner says:

C.r. So far so good on the T4 and vit C ascorbic powder USP compounded by Good Pharma Pharmacy in San Diego. . Only on it two days and as you know the body needs several weeks to respond fully. I felt so great on Levoxyl – what a shame all this had to happen. It has taken three months , maybe more, out of my life.

June 24, 2013 at 2:44 am
(211) c.r. says:

@ karen im so glad you finally found something thats working for you !!! after all this atleast i now know if i ever need to switch again that sandoz will work for me and wont have to go through trial and error so to speak im doing fine as well…..please keep me informed on youre progress wishing you well from chicago….. take care

June 24, 2013 at 11:12 pm
(212) Alyssa says:

I have suffered for many years with a constant period that never went away. After 5 doctors not being able to figure out what was wrong and 3 endocrinologists trying different thyroid med brands, constantly telling me its not your thyroid. I was at a loss. When I was finally put on LEVOXYL my period returned to normal for the first time in 10 years! Now I had to switch to synthroid and my continuous period has started again and severely heavy! I don’t know what to do, my husband and I want another kid, but a hysterectomy seems to be the only option. Please does anyone know anything???? Is there any thyroid med most similar to levoxyl beside the generic and besides synthroid?? Desperate…..

June 25, 2013 at 9:26 am
(213) Valerie says:

This is a wonderful resource!

CVS didn’t honor my 90 day refill request nor tell me about the recall. They kept saying “manufacturer shortage”. Dissatisfied, I went to the ‘net and read about the “recall”.

The drug was voluntarily recalled by its manufacturer, Pfizer.
Recalled? Voluntarily? Really?

It’s a sorry day when car owners are treated better than patients. When a car is recalled, everyone is notified via media including a mailed notice to the car owner address of record. Repairs are offered free of charge.

Drug recall. Patient notification? Nope.
Replacement being offered? Nope, I have to call my doctor for replacement medication. Really? That ain’t right.

I wonder if untreated hypothyroidism is worse than the effects of the competitor medication? I wonder if I can die from hypothyroidism?

These kind of questions would be answered if it were a car recall. Why aren’t we getting the same or better treatment? This is our “health” people!

I’ve decided not to take the remaining 6 Levoxyl pills since I’m aware of the recall and seeking my surgeon/endocrinologist for a recommendation. No news yet.

Thanks to all of you, I located several compounding pharmacies who will levothyroxine with microcrystalline cellulose and nothing else. I await my surgeon’s response.

This is a great forum. I especially value the input of Karen and C.R. Thanks everyone.

p.s. spell-check would be fantastic!

June 26, 2013 at 8:54 pm
(214) jt says:

There should be a lawsuit for not giving a heads up about discontinuing a drug needed for life.

June 28, 2013 at 4:26 pm
(215) David Wilkerson says:

If it says Pfizer, do not buy it!!!, they called me right back after my complaint and said the problem is with the Pharmacy not telling us right away. They said the problem was the oxygen canister???
what????? if the canister is the problem then please remove it!
The drug is OK but the canister caused the “smell” what a bad excuse- also what a worthless company. It is all about money, it will come back next year at 80 per bottle.

June 28, 2013 at 8:07 pm
(216) Linda says:

I have tried every brand. The only one that works is the Levoxl. I fell normal on it and it was constant. Good blood work until the last 6 months. My reading were going from one extremem to the other. So was getting inconsistant strengths. But even then I felt okay because I do great on Levoxl. Now I had to take Levothyroxine till we get a new batch. I know it is the generic for Levoxyl. But I feel slightly depressed, don’t accomplish as much, I don’t feel happy or perky like when on the Levoxyl. Synthroid was the worst for me going from 24 down to 00 from month to month on the blood work. Please get this back in production with the same formula just without the inconsistancy and plastic smell. I never experience the smell just more of a change in my blood work and having to adjust up and down just to back back to the original mg’s.

June 29, 2013 at 4:37 pm
(217) glenna says:

Felt great on Levoxyl and S R t3. Now I am in the same boat with the rest st of the thyroid planet. Tried Mylan Levo, bad; tried Syntroid, worse! Now I am on the Sandoz levo and not doing well, either. Thursday felt OK, Friday felt a tiny bit better, today experiencing extreme tightness in chest, throat and head, tingly lips, too. Very sad.
May go to compounding but doc was concerned, even though she compounds for other things.
Ladies using the compounding Levoxyl, please post updates on your progression. You are all in my good thoughts and prayers.

June 29, 2013 at 5:06 pm
(218) Mindy says:

My endocrinologist switched me to Levoxyl a few years ago because the generic wasn’t doing much and if I changed pharmacies and the manufacturer was different it would vary on how it helped and what ingredients were in it. I also have Celiac Disease and Levoxyl was the safest for me. That only leaves Synthroid and with my gluten intolerance that is not really an option either. My doctor is not big into natural alternatives so I am going to go to naturopathic doctor but my appointment is 2 weeks out. Has anyone had luck with natural alternatives to treat the thyroid that are also gluten free. It sucks that so many of us either have to suffer from a thyroid that isn’t working well or gluten exposure which makes us just as sick. It really isn’t acceptable – is my catalyst to finally switch to naturopathic medicine.

June 29, 2013 at 7:56 pm
(219) Anita says:

I was on Levoxyl 112 for 10 years but 3 months ago my thyroid was low and I was switched to Levoxyl 125. My body adjusted to that, (I’m also 29 weeks pregnant) and when I went to refill my script in April, I was told Levoxyl was on back order. The pharmacy didn’t tell me until after I had purchased what I found to be a generic and luckily I knew not to take it. My doc told me never to take anything but name brand. I went back in the pharmacy and the pharmacist assured me it was safe and very similar and no one had any complaints. I called my doc and she said, don’t take it!! She prescribed synthroid 125 for me. I have been suffering from many physical and emotional symptoms since starting it. I’ve had arm pain, high blood pressure, anxiety, crazy dreams, sweating and just an overall blah feeling. I’ve been to hospital 2 times for blood pressure and once for arm pain. Has anyone else had blood pressure issues since switching? Just curious to see if this is the culprit or if it’s gestational hypertension due to my pregnancy. It’s just ironic it all started shortly after switching to Synthroid. I just want to feel better ;-)

June 30, 2013 at 8:16 am
(220) jgp says:

My thyroid experience has not been easy. I had extreme reactions to synthroid. T3 additions sent me over the roof. I then worked my way through the natural products. Armour worked well…until it didn’t. The Levoxyl. It wasn’t perfect; always having to minutely change the dosage. The two years ago I started experiencing extreme hair loss and fatigue and terrible constipation(never a problem before).

After the recent recall I called Pfizer unable to wrap my head around why a drug would be recalled for over a year because of packaging problems. First the customer service person stuck with that story(the one they told pharmacies and the public) then he said there have been stability problems with the drug. The recall was actually in two stages; first the packaging angle and then the stability of the drug itself.

Everyone affected by this should be on the phone to Pfizer immediately!
It is getting so tiresome for those of us for whom Thyroid meds are a life and death issue…and for those whose quality of life is affected.

If we don’t let them know how much it affects us, they will continue with sub-standard products! Let your doctors know how angry you are…and the pharmacies. My pharmacy told me they were ONLY told about a packaging problem!

June 30, 2013 at 12:32 pm
(221) Suzanne says:

I was diagnosed with Graves Disease, had the radioactive iodine treatment, tried several medications that didn’t work out and had been successfully on 0.88 mcg Levoxyl for 10+ years. Nearly 2 year ago, I began experiencing uncharacteristic extreme fatigue, hair falling out, severe brain fog, constipation, racing heartbeat, feeling hyper, inability to concentrate and other unpleasant symptoms. Long story short, my thyroid levels are all over the place. I went from hypothyroid to hyperthyroid which is rather odd for someone who had the radioactive iodine treatment. I am now convinced it’s the unstable Levoxyl. I currently have 3 bottles of Levoxyl: 0.88 mcg, 1mg, and 112 mg. After reading all of your comments, I have come to the conclusion that the Levoxyl has been inconsistent for two years.Could it be that King Pharmaceutical realized they had a serious manufacturing problem that was over their head so decided to sell to Big Pharm, Pfizer? Could it be that Pfizer was aware of this and immediately pulled Levoxyl off the market because of the known inconsistencies so they wouldn’t be responsible and are now waiting to see the fall out? Why in the world would it take a year to begin manufacturing again if this wasn’t the case? Surely an odor in the bottle caused by a canister would be corrected immediately and manufacturing would continue as usual. It makes no sense. Why did our government approve the sale knowing millions of people would be without this life-saving medication? There appears to be a cover-up. Class-action lawsuits have been won for far less. This is outrageous. Have any attorneys jumped on the band wagon yet? COUNT ME IN!
We, the people of the USA are the only ones who are going to change things that are not working—one person at a time. Grateful for the internet and everyone who tells their story.

June 30, 2013 at 12:51 pm
(222) Karen Garner says:

c.r. T4 with filler of Vit C powder is tolerable, but not without symptoms. The Vit C powder is a high anti inflammatory. The pharmacy had to pay $100.00+ for it.. The insurance tells me it will NOT be covered due to the Vit C.

After a week on Vit C filler and T4, I still notice hypothyroid symptoms of confusion and fatigue, sore under arms, etc . The anti inflam symptoms, however, are much less than the T4 with microcrystalline cellulose dose of 125 mg I had in first compounded script.

For those of you with no anti inflammatory issues, the compounded should work well with filler of either micro crystalline cellulose or Vit C powder. The gel(potent anti inflammatory) capsule can be substituted for a veggie capsule.

NO dark chocolate or coffee wihin 4 hours of taking thyroid med. Caffeine interferes with adsorption.

The anti inflam symptoms do not happen on Sandoz because the micro cryst. cellulose dose is .18 mg. It has lactate in it, but after trying 2 compounded scripts, the Sandoz was the lesser of TEN evils which included the other meds I have tried.

To others, check out the inactive ingredients in each med we have posted here, and determine what will bother you. Sometimes you must go through trial and error. Hashimot ‘s patients should NOT take any med with iodine in it. Both Synthroid and Mylan T4 have it.

Tirosint worked well except I needed TWO prescriptions to get my dose for 30 days. They do not go higher than .15 mg per 28 capsule pack. .

For sure, register with Levoxyl site to get your issues on file.

July 1, 2013 at 3:27 pm
(223) glenna says:

Sandoz sent my blood pressure sky high. Swollen lips, heart attack symptoms, you name it. Happy to hear some people are doing better on
Sandoz. Prescribing doc said, don’t take anything! Going to see physician today.
God Bless!

July 1, 2013 at 5:15 pm
(224) Donna says:

Whoa, over two hundred comments and not one crank! That is most unusual – nice group of people with a common mission. I am so thankful for all the reasoned responses to this subject. And I echo all the previous responders. I dread every time I try a new thyroid med. I can tell in one day whether it will cause me problems or not. I am thinking I will go to the compounding pharmacist next. May God help us all!

July 2, 2013 at 11:24 pm
(225) Karen Garner says:

I have tried Sandoz and it definitely has a much stronger dose in T4 for ME than the other synthetics. I had to reduce my dose to .15mg from .175 mg. I do believe we all react differently to each product and must consider that. Different folks different strokes.

Yes I agree that this is a great forum with very intelligent comments and information. If I learn any other information I will continue to pass it on in this forum. Thank YOU Mary Shomon.

July 3, 2013 at 12:19 am
(226) Carla2013 says:

This place rocks! I came here trying to find out where I could get Levoxyl since I couldn’t find it in the DFW area. Not only did I learn why I couldn’t get Levoxyl, I also found out why I was having so many problems after having to switch to Synthroid. Things have not gone well. The heart racing and palpitations are the worst symptoms, but stomach cramps, constipation, hair loss, sore throat, odd moods, and just generally feeling like my thyroid problem was not under control are bad as well. I had no idea all of the problems were caused by the medication change. I figured the out-of-whack thyroid feeling and the heart stuff was, but not the other things. Yesterday I started cutting the pills in half trying to stop the heart problems but so far it doesn’t seem to be any better.

After reading the comments I will make an appointment with my doctor. I think I want to try the Sandoz. I’ve only been taking medication for a couple of years and only need 25 MCG to feel pretty good. Before I started taking Levoxyl I had no energy. It felt like I was pushing a 200 pound bolder up hill just getting out of bed. The difference Levoxyl made in my life was amazing. Generics did not work for me like Levoxyl did. On Synthroid I still have more energy than before I started to take thyroid medication, but all the side effects are enough to make me consider just not taking anything until I can get to my doctor and try something else.

Thanks to everyone that took the time to post. I’ll be back.

July 3, 2013 at 6:55 pm
(227) Karen Garner says:

I would have no doubt that these comments are screened prior to posting to prevent inappropriate comments from being aired.

To Carla 2013: 25 mcg is a very very small dose. Your thyroid is still producing hormones. You might be missing some nutrients needed to support proper thyroid hormone function. You should get to your doctor, preferably an endocrinologist. In the meantime check to make sure you are getting proper vitamin and minerals. You should have a complete panel of blood work and complete check up to make sure the tiredness is not caused by something else.

I only saw your comment above, I do not know why you were originally prescribed the thyroid supplement. So you never had your thyroid removed or radiated to suppress function?

As c.r. says, Sandoz is the closest replacement to Levoxyl with two of the same inactive ingredients, and two more. See drugtalk.com, “inactive ingredients in thyroid meds” to learn more about the additives which are powerful. I can get Sandoz, .175 mcg, for 30 days for only $8.00 cash price at Statler Bros in CA. That is without insurance. I don’t know what is available in your area, but just call around.

I have tried three different compounded scripts, the last being synthetic levothyroxine(T4) with a filler of vit C ascorbic powder. The first two presented the T4 well. The third was inconsistent. ( c. r. please note.) Some compounded prescriptions can be inconsistent in delivery and most endocrinologists will not recommend them for that reason. It does not happen with all prescriptions compounded. More later.

If the doctor does prescribe Sandoz be careful as in many patients, like myself, Sandoz is more potent. I had to reduce the dose when I took Sandoz.

July 3, 2013 at 8:02 pm
(228) Karen Garner says:

To All:

See my post 102 for Sandoz T4 inactive ingedients. It has NO gluten.

Carla2013: See Web Site “The simplist way to support thyroid health – food” by Women to Women. This will list nutirnets/food necessary for proper thyroid function.

TO Mary Shomon, author and creator of this forum, “Please get this in the national news!”

Karen

July 4, 2013 at 12:23 am
(229) C.R. says:

@ karen…glad youre tolerating the new compound i am noting though the third compound as inconsistent… i think what is happening with alot of people here is that their trying way to many different meds and not giving a specific one a chance to work the first week on sandoz i did experience some swelling in the clavical area of my neck and the remaining thyroid…i had a sore throat for a couple days [karen please note] but my body has adjusted to the same dose i was on levoxyl after 22 years of being on the levoxyl of course my body went through a adjustment period . as noted once again levothyroxine by sandoz is the closest you can get to levoxyls inactive ingredients…everybodys body adjusts differently but i cannot suggest switching thyroid meds over and over if you need to switch let youre body adjust atleast 72 hours before trying another med .if you swith before 72 hours you may still have unpleaseant side effects from one med and automatically assume its coming from the new med…update on FDA website it is showing 7/02 as a reverified date …. everyone who has not registered with levoxyl.com please do so ……..karen i could write a book on all the research i have done since this recall …..im glad to see alot of these people have recognized our research and have found it to be informative and helpful …….people pleae give youre body a chance to adjust to some of these meds some of the side affects may be unpleasant but dont forget youre thyroid controls every single hormone in youre body dont automatically assume some of these side affects are from the meds alot of the symptoms alot of you are describing comes from the thyroid disease itself !!!!! karen pleaee keep me informed of any new developments

July 4, 2013 at 5:07 am
(230) Karen Garner says:

c.r. None of the alternatives are going to be perfect. Even Levoxyl was inconsistent in the last year. That is the real reason they pulled it off the market.

July 4, 2013 at 5:23 am
(231) Karen Garner says:

c. r. I have given each med I have tried at least 2 weeks. I certainly agree that the med should be given more than 72 hours…

July 4, 2013 at 10:59 am
(232) glenna says:

Interesting comments ladies. I stopped Sandoz because my blood pressure went sky high, swollen lips, crushing pain in my chest and numbness in arms. I was taking .62.5 mcg.
Went 24 hours without anything and doctor had me take Tirosint, started at .25mcg.. Had crushing tightness in chest, lips are swollen, eye lid was swollen, horrible indigestion too!

I am going to take a few days off of everything and then try a compounded which apparently has only one filler in it, but can’t remember what it is.

Karen, in your post you stated you went from .175 mcg to .15 mcg on Sandoz. Did you mean .150 mcg?

Appreciate the comments and feel like we are stronger together than trying to fight this issue alone.
We will make it through the darkness.
Peace to each of you!

July 4, 2013 at 10:06 pm
(233) Karen Garner says:

Glenna: I meant 175 mcg to 150 mcg, or .175mg to 150 mg.
I added the point in the wrong places. Sorry.

July 4, 2013 at 10:44 pm
(234) Karen Garner says:

Glenna: there are 1000 mcg in 1 mg. I meant to add that in last post.

Curious to know why you were put on thyroxine supplement in the beginning?
The dose of Sandoz at 62.5 mcg is a very small dose. If you did not have radiation or surgery, your thyroid is probably still producing thyroid hormones. Did any doctor ever suggest making sure you get the proper nutrients needed for thyroid function? Please see my post 228 to Carla2013 for info on that subject.

I am going through the same issue . I have had a very difficult time finding the right replacement to Levoxyl. To find inactive ingredients in other supplements go to their Web Site, such as NatureThroid.com.

If you have no reaction to either crystalline cellulose or Vit C powder, both potent antiinflammatory agents, you would do well on compounded. Note that there can be a problem with consistency in delivery.
Stay away please from Sandoz if
you have those symptoms again. Sometimes it is good to get off all supplementation for a while. Good recommendation from your
doctor until your apt. Good luck! Keep posting!

July 4, 2013 at 11:10 pm
(235) Karen Garner says:

Glenna: After reading your comment again, I thought of something else.

Synthetic levothyroxine has a very long half life of 6-7 days. This means that in 6-7 days, if you stopped it on day 1, only HALF of the med has been eliminated from your body. You said you went off it 24 hours and tried Tirosint. This is not long enough to rid your body of the Sandoz T4(short for levothyroxine). The symptoms that you suffered while you were on Tirosint were symptoms still of the Sandoz T4. I would try Tirosint again when you have been off Sandoz for at least a month. So you took the Sandoz on day 1, 7 days later you had half in your body, 7 days later another half is gone, and 7 days later half of that is gone, etc etc. That is why it takes 6-8 weeks to reach an optimal level of a thyroid supplement.

Tirosint worked great in me. It only goes to 150 mcg packets, so my problem would be cost. I would need a pack(of 28) of 100 mcg and another pack of 75 mcg, total cost $88.00. The glycerin and gel in the capsule are mild anti inflammatory agents. But T4 delivery is excellent – at least it was for me.

July 5, 2013 at 8:03 am
(236) jpx says:

The Levoxyl situation also has a cost component: My insurance company had charged me $7 for 3 months of Levoxyl. It is now charging me $50 for the same amount of Synthroid!

July 5, 2013 at 11:41 am
(237) c.r. says:

karen i have never found any inconsistencies in levoxyl even after the reformulation i had been on levoxyl for 22 years thats a very long time and my dose of 88mcg was never adjusted i have maintained a tsh of 1.27 the whole time and even though i have hashimotos.had a goiter and half my thyroid and parathyroid removed i still remained on the same dose for the 22 years so the changes never affected me…..hashimotos is an autoimmune disease of the thyroid and as long as you still have good thyroid tissue in youre body youre immune system will attack it so to speak so i do produce flu-like symptoms every now and then but thats the disease not the meds

July 5, 2013 at 12:48 pm
(238) glenna says:

Karen, Thank you so much for your comments on the half life of the meds. I wondered about that myself, but forgot to mention it to my doctor.
My hormone specialist told me not to take anything for two weeks, but my GP was concerned about going hypo again, as was I. I’ve been off everything for 48 hours now and actually feel decent. Not great, but better. Thyroid seems a tiny bit swollen, but it is probably a reaction to so many meds.
I also have Hashimotos. Unfortunately, when I was diagnosed I was also entering menopause, unknown to me as I didn’t have the traditional symptoms. I am only Vivelle patch and progesterone, believe that has really helped calm my thryoid along with the Levoxyl and SRT3.

My last visit to the hormone specialist in May TSH was 1.00 – perfect. It hasn’t looked that good in yearsMylan. I’ve been on meds for nearly 3 years. The generics worked OK at first, then doctor Arem prescribed the Levoxyl and really felt better except for the menopausal symptoms. I’ve been on top of the world for 22 months, then started new meds around 17 days ago: Mylan, Synthroid, Sandoz, Tirosint.

I now realize that is waaaaaay too much in such a short time period. It is my intention to detox for a while, though will receive the compunded stuff next week.

You are an incredible person, I appreciate your posts along with CR.
Both of you are bringing valuable information to our discussion.

I am calling Pfizer today!

Thanks again, ladies!

July 5, 2013 at 12:57 pm
(239) Carla2013 says:

@Karen, thank you for the information. I will check out the site you suggested. In the past I had tried OTC thyroid supplements and they did help some, but not enough. Also over the years they seemed to help less. If I could find a more natural way to get the same results I would definitely prefer it. I already take vitamins and natural supplements such as Kelp and Milk Thistle. Thankfully, at 63, I do not need to take any meds other than the Levoxyl. I’ve always tried to avoid medication as much as possible because I think everything has side effects.

I’ve been taking thyroid for almost three years. My doctor still does basic blood checks every six months or so. In the beginning he checked more things, but he still checks cholesterol and vitamin D levels as well as THS levels. When two rounds of prescription vitamin D didn’t bring my D up I ordered Thorne Labs D3 and now my vitamin D levels are good.

I’ve been on Synthroid a couple of months.. At first, other than racing heart it wasn’t so bad. I thought my body would adjust. It didn’t, but other side effects showed up as well.

A three weeks ago I started taking B6 because I read that it helped the adrenals which could effect the thyroid. Now that I think about it, the B6 does seem to have helped my energy level a little but not the other stuff. I haven’t noticed any negative effects from adding B6. Does anyone have any thoughts on adding B6?

Karen, I’m so sorry you are having such a hard time. The people that have had to have their thyroid removed and those that have a disease effecting their thyroid function are having a really rough time of it. You are in my thoughts. And again, thank you for the advice and all the information.

I enjoy reading all the posts.

July 5, 2013 at 8:06 pm
(240) c.r. says:

@ glenna hi hun how you feeling ?i been reading some of youre posts.. as i suggested to karen when you switch meds if necessary atleast give youre body a 72 hour break or you may not be able to tell which symptoms are from which meds i too have hashimotos which im sure you know is a autoimmune disease…..with hashimotos you will have flu-like symptoms sometimes like sore throat, and swollen glands,,,,alot of people confuse those symptoms with a reaction to a new med….sorry you had no luck on sandoz which is the closest to levoxyls ingredients…there are many forms of levothyroxine made by different companies but after months of research i believe sandoz is the closest to levoxyls inactive ingredients….i cannot enthuthiastically reccomend. progesterone for hormone replacement….progesterone has increased cancer risk for some women…..riding out the symptoms of menopause is the safest…..what city do you live if you dont mind me asking? i live in chicago and i could reccomend some fantastic doctors …i been in the health care field for 22 years if you have any other concerns or questions ill be glad to answer them…..take care hope you feel better

July 5, 2013 at 10:27 pm
(241) Karen Garner says:

c.r. Youare making a smooth transition due to your extensive research as well as very positive attitude. .

Reading post 229 : I agree that many people are not giving the meds enough time or taking too many on top of each other.

San Diego Union Tribune posted my Letter to Editor. I referenced this Web Site. I will copy what I wrote tomorrow, and others can use it, add to it, edit, send it in their name to their newspapers.

This Levoxyl issue must be investigated and evaluated legally.

I am staying with the T4 and Vit C powder compounded. Have no time for doctor visits . I am recovering from a molar extraction, OUCH, on Monday. This was delayed long enough(due to the thyroid issue) . A filling came out without my knowledge, and routine dental x rays Oct 2012 showed tooth infection. Also delayed due to my Vit D level being extremely low. It just tested normal, so I had the extract Monday. (I don’t do root canals – I went to a holistic dentist). The infection had not spread. Procedure went well, by Wed no pain. This is leading to a purpose:

Note: low Vit D effects thyroid function! So all, have your Vit D level checked!

Good Pharma pharmacisit reassured me there is no inconsistency in my compounded. I think, like you mentioned, some of my symptoms are related to the disease, not the meds, although I know for sure I
cannot tolerate microcrystalline cellulose due to the inflam properties. Even Westhroid P for pure has inulin, a potent inflam.
It also has medium chain triglycerides, and lactate monohydrate.
What do you think of the last two inactive ingredients?

Karen

July 6, 2013 at 12:22 pm
(242) Karen Garner says:

c.r. Never had a problem with microcrystalline cellulose in Levoxyl, but it was only .18mg. The dose in compounded as filler is 125 mg. Quite a difference.

Contining well on Sandoz?

July 6, 2013 at 2:07 pm
(243) Carol says:

Hi Everyone, I just went on the FDA site and went to the recalled drugs and typed in Levoxyl. No matches were found. Can anyone explain this?

July 6, 2013 at 4:49 pm
(244) c.r. says:

@ carol its there hun go back to the website look in the left hand column of the page go to the ”L” category go into the link and its the third from the top its listed as levothyroxine sodium with levoxyl in parenthasis hope this helps……

July 6, 2013 at 4:57 pm
(245) c.r. says:

@ karen doing good on the sandoz sometimes i get some swelling but nothing i cant deal with……in 6 weeks i do the blood work and then ill see thats whats going to determine if the sandoz is working but im feelin ok will definetly switch back though i am thankful i found a solution and wasnt one who had to switch more then once ……this is one hell of a game these people are playing with our lives !!!!! thyroid does control all the hormones in youre body so that pretty much is saying everything you need to function on a daily basis….eating,sleeping,youre thought process,body temp,anxiety levels,heart rate, etc.!!!!!!

July 6, 2013 at 5:15 pm
(246) glenna says:

Hi c.r. I feel decent. I’ve been walking to keep the energy level up, drinking plenty of water, and taking my supplements throughout the day.

The main problem I have is very low blood pressure when not on the thyroid meds, and some brain depression/fog. I am much happier today than in previous days, mood is much better I don’t want to cry today!!!
I’ve slept very well the last two days, almost 9 hours last night, which I think really helped.
I’ve actually lost weight, but that really hasn’t been an issue in recent years.

I know I screwed up royally not giving myself a break between the various meds. Big mistake.

I live in a suburb of Dallas, TX. My physician is Dr. Anne Coleman, integrated medicine, who I feel is one of the best doctors I’ve ever had. Hormone specialist is Lisa Gorn a DO.

It looks like I will be off the meds until maybe Wednesday when I should recieve the compunded stuff. I pray that stuff works. I thnk I will ask doc to check TSH and free t4 prior to taking the new stuff just to see how much change there has been. May go another week as long as I don’t start feeling crazed…

Are you progressing with your new meds?

Thank you for your comments!

July 6, 2013 at 7:27 pm
(247) Tammy says:

Is there any way to lobby to have Levoxyl put back on the market. There’s nothing else I’ve ever tried that works as well for me.

July 8, 2013 at 2:50 am
(248) ruby says:

Why is the media not involved. I am thinking on contacting an attorney. This is no joke people are getting really sick and cannot wait until 2014…

July 8, 2013 at 11:01 am
(249) Bonnie says:

Amen Ruby.

All I want is my Levoxyl medication back.
I am not doing very well at all. The other medicines are making me much sicker. This nightmare needs to end. I’m so allergic to medications in general and my lifeline which has been Levoxyl was the only medication I could take and feel well. This is not a good situation at all for so many people. My husband is so worried about me and I don’t want to leave this earth for not having the right medication to thrive. It is very cruel to have the medication you take for life taken away. If we knew it was short term to restock pharmacies I have hope to hold on. I don’t think I’ll last a year when my body needs the medication now!!!! Pfizer needs to be made aware and give this top priority! This is my continuous prayer thst the medicine will be back soon. Whatever needs to be done. I’ve already called Pfizer as well.

July 8, 2013 at 11:15 am
(250) Bonnie says:

Amen Ruby!

I am one of those people who keep getting sicker without it.
Need Levoxyl back now!!!

July 8, 2013 at 4:34 pm
(251) Karen Garner says:

Bonnie: Is this your first post? We don’t know your history. Just hang in there… we are working very hard with Levoxyl, FDA, attorneys, to get a fast restock of the medication you need. Be sure to read past posts.
There are alternatives to tide you over in the interim. Don’t give up.
Let us know how you feel. Look forward to your posts.

July 8, 2013 at 6:07 pm
(252) Carol says:

C.R. Thank you for showing me where the recall is on the FDA site. Karen, I believe Bonnie is post#’s 202 & 203. Same lingo. Thanks to both of you for the wealth of knowledge on this forum. It has been most useful. If I can help any way with attorneys or FDA please let me know.

July 8, 2013 at 7:26 pm
(253) Gena says:

So glad I found this site. I am like everyone else here – hypothyroidism diagnosed 11 years ago. Been on Levoxyl since day 1 of diagnosis and it brought me back to life. 2 months ago I had to go on the generic version of levothyroxine and everything has gone waaaay downhill from there. I am more depressed than I’ve been in years, crying all the time. Anxious, can’t sleep at night then extremely tired to the point of almost collapsing. I was told to try a higher dosage of the generic, so now I just started that. I will get re-checked in a couple of months. Not sure where we go from here, without our levoxyl. I can’t understand how it can be legal to have this drug pulled from us so suddenly, and now all of us are suffering.

July 8, 2013 at 7:53 pm
(254) Karen Garner says:

Thanks Carol.

Bonnie, are you post 202/3? If you have tried many different thyroid meds in past two months, I can understand how poorly you
feel. See c.r. post 177 and 240. She and I both have extensively researched the thyroid meds . We are both health care professionals. She is on Sandoz. I am making a transition back to Sandoz now due to reactions to inflammatory fillers in compounded meds . I have given each at least 2 weeks. (I could not tolerate Synthroid and Mylan)
The T4 delivery is fine in compounded, but I react unfavorably to anti inflam fillers.

This is what is working for me. I am starting back on .175 mg Sandoz levothyroxine half tablet a day for 3 days, then half tablet in morning and half at night for a week. After 3 days I am feeling fine so far with no racing heart or tight chest. You need at least 72 hours to adjust to stopping one med, probably even more time than that. Then you have to gradually expose your body to the new med. Levothyroxine of any brand has a half life of 6-7 days. So it is difficult to determine which symptoms belongs to which med.

After a week on half in AM and half in PM you need to discuss your timing options with your doctor. This IS working for me. I am hoping it works for you.

July 9, 2013 at 1:31 am
(255) ruby says:

Spoke with a rep at Fox 11 news LA and they seemed interested in the shortage. I emailed them details I am hoping they will make a deal out of it to help Pfizer get the meds out quick. I sent FDA an email. If anyone else is interested in emailing their concerns to Fox 11 news here is the info: news@fox11.com

Bonnie I hope you feel better soon.

July 9, 2013 at 7:48 am
(256) Valerie says:

Mary Shomon and all of you – thanks for this forum! You Rock!!

Geek Tip: Press Ctrl+F to find text in this article/forum/page.

This experience has been a “wake up call”.

I went 11 days without Levoxyl. It was fine. In fact, it was reassuring to stop taking it after learning about its history. Pfizer lost my trust and respect after volunteering us for its recalled supply. They made money on us during their recall. That ain’t right. The recall and reformulations should have been highly publicized. I won’t be waiting for its return. The skeptic in me is on high alert.

My doctor recommended Synthroid. I insisted on 50mcg tablets (Forum inspired) I investigated insurance coverage. Compounding pharmacy is not a plan benefit. 90 day supply copay: $ 19.00 Levoxyl, $ 146.00 Synthroid and $ 21.00 Sandoz

Yes. The oddity that Levoxyl is less than the generic is noted. Don’t go there. That’s an off-topic, insurance discussion. : -)

I was willing to take Synthroid if doctor had strong reasoning vs. the generic. He didn’t. I’m on Day 6 of Sandoz. So far, so good!

I’ve decided to:

• Keep a positive attitude
• Keep active in this forum
• Track symptoms
• Always accept pharmacy counseling when I pick up prescriptions: asking about changes in manufacturer, drug, instructions and interaction.

Note: I take Vitamin D3 liquid drops after deficient levels of Vitamin D (common after thyroidectomy).

Remain Positive!
Find better alternatives. We can do this! Thanks Forum!

July 9, 2013 at 11:16 am
(257) Carla2013 says:

Today I got an e-mail answer from Pzifer with a number to call with my concerns about Lavoxyl. The person I talked to ONLY talked about the packaging issue and basically told me I was screwed — the product would not be available until 2014. When I said I was amazed that a packaging problem would take that long to fix she blamed the FDA saying any change had to be approved. I asked why not go back to the old packaging which had worked for years, and would not be something “new” so would not need FDA approval. She just seemed annoyed and repeated what she had already said. Sigh…..

In the meantime I’ve been trying to find a local pharmacy that has the Sandoz product. After calling several of the big pharmacies with no luck, I called Sandoz. Logically, I thought, they would know where there product was sold. Nope. They were however nice enough to give me the product numbers and suggested I call small pharmacies that might be willing to order the product if they didn’t already have it.

I live in Garland, Tx which is part of DFW area so I do have access to local smaller pharmacies. Thankfully I was able to find a small pharmacy, Garland Independent Pharmacy, that has Sandoz. Thursday I will ask my doctor for a prescription 50 MCG to avoid the dye. The cost is $12.99 for 30 pills. They also do compounding I believe, which is good to know.

Hopefully the Sandoz will work for me. Boy, I’ve found out more than I ever dreamed I’d need to know about drugs, drug companies and pharmacies!

July 9, 2013 at 11:22 am
(258) Carla2013 says:

And again, I am so thankful for this site and all the people that take the time to post.

July 9, 2013 at 4:35 pm
(259) David Wilkerson says:

Everyone should write or call Pfizer and ask how much the drug will cost when they bring Levoxyl back, especially after they took the market share by spending 3.6 billion to remove their competition.
Great Monopoly move, they now own Boardwalk, the rest of us are on Baltic Ave!

July 9, 2013 at 10:12 pm
(260) Cheryl says:

I’ve been taking Levothyroxine for the past month and it seems to be working ok. I do miss my Levoxyl though. May be psychological but I just called my pharmacy to reorder and they say there’s no way of telling when it will be back on the market…

July 9, 2013 at 10:42 pm
(261) Nicole says:

Anyone looking for Sandoz brand, my local Schnucks Pharmacy carries it. Whats even better is it was only $10 for a 90 day supply.

Try calling your local Schnucks.

Thanks everyone for your posts. Very beneficial!

July 10, 2013 at 2:27 pm
(262) glenna says:

Hi Carla2013,

I live in Richardson. My CVS on Plano and Buckingham ordered the Sandoz for me, it arrived in two days. The prescription cost around $8 for a 30 days supply, but that could just be my insurance.

Unfortunately, Sandoz did not work for me, but I was trying too many things to soon so, as Karen states, I may have reacted to some of the other crap I tried.

I am currently waiting on a compounded version, hopefully that will work.
I’ve been of the meds one week today. Have actually felt better, but notice a big change, so not feeling so well, today.

Good luck, I hope Sandoz works for you!

July 10, 2013 at 2:36 pm
(263) glenna says:

EVERYONE WHO TAKES COMPOUNDED MEDS PLEASE READ THIS:
I know Mary Shomon had a post about the new senate bill 959 regarding
ending our access to compounded thyroid meds and other hormone medication, but it is going to a vote, soon.

Please contact your senators, asap, and tell them to stop messing with your right to these life saving products, especially in the light of the Levoxyl recall. I have faxed a letter, phoned twice and sent several emails, this is way too important to ignore.

I do realize people have had issues with compounding meds, as have I, but several of the pharmaceutical brands I’ve taken have nearly put me n the hospital, too.

http://www.senate.gov/reference/common/faq/How_to_contact_senators.htm

Thank you for your support!

July 10, 2013 at 2:51 pm
(264) Karen Garner says:

Good info. I have already voted to stop the bill. The government wants the FDA to over see compounded pharmacies. They could stop some of the meds that we need, including natural hormone therapy as well as compounded thyroid. Not a good thing.

The individual state currently overseas compouding pharmacies. The rules are very strict in CA. From what I have read the smaller compounding pharmacies will not be effected. That includes MY Good Pharma in San Diego.

Glenna: curious to know what filler you have selected. Whatever it is, I know it will work better for you than any commercial(other than Levoxyl). Please keep us posted. c.r. where are you?

July 10, 2013 at 3:17 pm
(265) Carol says:

After 26 years on Levoxyl 100mcg, tried Tirosint 50 mcg (after reading posts regarding need to initially cut back dosage) and thought I was going to die. Worst stomach pain ever starting approx. 20 min after taking the Tirosint. Pain last all day & into the night. Additionally, I had rapid heartbeat and anxiety. Took 8 Tums throughout the day/evening with very little relief. Today I feel better and luckily found a Levoxyl at the bottom of one of my drawers. Took it and feel fine. After 8 phone calls, finally found a pharmacy stocking the Sandoz version. I am praying this works.

July 11, 2013 at 4:12 am
(266) cabro says:

Imagine being a thyroid cancer survivor, being allergic to Synthroid and needing Levoxyl to survive. Pfizer should be ashamed of their lack of real effort to get this drug back on the market.

July 11, 2013 at 10:37 am
(267) Tonya says:

I am glad I discovered this forum. I needed to refill my levoxyl prescription so I telephoned my prescription into my pharmacy. When I went to pick up my levoxyl they told me it wasn’t ready. I asked when would it be ready and they replied they didn’t know. I asked how they could not know and then they said it was on back order and had been on back order since February 2013 and stated I should use something else. The problem with that is I have used the generic before and had adverse side effects. I notified my doctor and he prescribed synthroid. i have been taking that for about 2-3 weeks and it is making me sick. My throat hurts, my head hurts and it makes me extremley short of breath and gives me heart palpatations. I have decided to stop taking the the synthroid and notified my dr that I needed something else. i’m waiting for his to get back with me. Thanks to this forum I have learned a lot about medication. I had the radio active iodine so I don’t have a thyroid so I really need some thing thats going to work for me. Hoping soon our prayers will be answered and all of us will be on the road to recovery. I did go the the levoxyl website and submitted my e-mail address. Hopefully the media will take up our cause and put pressure on the manufacturer to get levoxyol back on the shelves since so many lives depend on it. God bless you all.

July 11, 2013 at 3:14 pm
(268) Glenna says:

Hi Karen,

The filler in the new T4, so my physician said, is myocell.
This is the filler in the SRT3 I was taking from the same pharmacy and it worked very well for me. Apparently, it slows the release of the T4, which will be good for me as fast acting meds make me anxious.

I tried to research myocell, but not finding much information regarding what it actually is. I will take the dose of 62.5mcg, which is what I was on with Levoxyl. I hope it isn’t too strong.

Question for the group – has anyone tried the essential oils for thyroid?
Mine is a tiny bit swollen and one of my nodules has grown a bit in the last year. I’ve read that oils can reduce nodules and thyroid swelling in general, but I am a bit gun shy about using another product until I get back on the meds. If you have first hand experience, please give us a report.

My heart certainly goes out to those of you who no longer have your thyroid. You are in my thoughts and prayers.

July 11, 2013 at 4:36 pm
(269) Carla2013 says:

Hi everyone. Today I got a prescription filled of the Sandoz generic for Lavoxyl. I take 25 mcg but got the 50 mcg so there will be no dye. I’ll have to cut them in half. With my insurance the cost was 3.03 for 15 pills. We’ll see how it goes. When I told my doctor about my experience with Synthroid he had no problem with me wanting to try a specific generic, and he also said if this didn’t work we would try compounding. He’s been great to work with.

We both laughed about one crazy side effect I had with Synthorid — I craved ice cream and toast, but not eaten together.. At the end I think 70% of the food I ate each day was ice cream or toast – nothing on the toast, just plain old toasted bread. Weird. It wasn’t the worst side effect, but definitely the most odd. LOL

Thanks to everyone posting. There is so much good info on this site, and it helps seeing how everyone is doing and how different meds affect
people. Nice to not be on the journey alone.

I just hope the Sandoz works

July 11, 2013 at 5:40 pm
(270) Karen Garner says:

Glenna: Excellent choice as filler. It is a plant cellulose – used as filler in compounded and other meds – has no published side effects.

July 11, 2013 at 6:19 pm
(271) Karen Garner says:

Glenna: Sorry Glenna, I jumpted too soon on that filler myocell. I had in my mind “microcrystalline cellulose”. I am NOT familiar with “myocell” , it sounds like it could be a cellulose, I have asked my compounding pharmacist to check. It could be a brand name. I do want to know about ALL fillers.

July 11, 2013 at 7:55 pm
(272) Karen Garner says:

Glenna:

I found Micella Casein(brand name Myocell) on GNC Web Site which is a dairy protein powder from milk. It is slow release. I wonder if this is your filler. If so it sounds great. Not an anti inflamatory. It must be pharmaceutically approved.

July 12, 2013 at 12:23 pm
(273) Glenna says:

Karen,

Thank you for checking on that. The pharmacist has a heavy, far east Texas accent and speaks rather quickly. I thought he said something about celery, but finally gave up trying to understand him. : )
I thought is could be a cellulose. I did see the “Protein Powder” myocell, but thought it would be strange to use that. Of course, I am not a compounding pharmacist.
My physician was impressed with whatever it is, so we shall see.
I should receive the meds on Monday.

Thank goodness I am still feeling fairly decent! Just some light dizziness, a tiny bit achy, the slight swelling in my thyroid seems to be lessening. I am experiencing difficulties with spelling and doing mental math, but perhaps that was always a problem…

I am so thankful to have happened upon this website. I feel that there is strength in numbers with kindred spirits.

An off topic question, are you in California?

July 12, 2013 at 2:44 pm
(274) Karen Garner says:

Yes, I am in Rancho Bernardo, a community about 30 miles NE of San Diego CA. Have lived here 41 years. Grew up in suburban Chicago, in the Mt. Prospect/Arlington Heights area.

Could you give me the name and telephone number of your pharmacy? I would love to find out what exactly your filler is, in case it might work better for me.

Thank you! Hope all works out perfectly for all of us!

July 12, 2013 at 6:16 pm
(275) Laura says:

I just tried to refill my levoxyl prescription today and learned of the recall. I was simply told at Walgreen’s that they didn’t know why it was unavailable and that I could speak the pharmacist for a recommended substitute. I then tried a Kroger pharmacy where they were very knowledgeable about the situation and advised me to call my doctor. Very different reactions!

I have Graves’ disease and was treated with radioactive iodine in 2001. I was placed on levoxyl by my specialist who told me NOT to ever take synthroid. He refused to prescribe it because of inconsistencies with manufacturing. I have done extremely well on levoxyl and have had steady test numbers for years, but I have had some weird symptoms over the past year or two. I felt several times like I had swelling in my thyroid and my energy levels have fluctuated. Now I wonder if the levoxyl strength was fluctuating?

After being stable for so long, I am loathe to return to the roller coaster of trying dosages and blood testing. I am also worried about the side effects others have mentioned. This is really scary.

July 12, 2013 at 6:39 pm
(276) pauline wright says:

Just came across this site whilst looking for info on levoxyl alternatives. Thank you Karen and everybody else for all this valuable information! My endo has today given me a prescription for Tirosint, but it looks like the cheapest I can get it is from my pharmacy in Canada, at 28 pills for $44.99. So, I’m going to have to find a cheaper solution. Karen, I am in San Diego also, where did you get the Sandoz? I’m also a little confused about some of the comments on reducing the strength due to the “dye”?? Thank you all.

July 12, 2013 at 7:02 pm
(277) pauline wright says:

Hi all, I just typed a long post and don’t see it up here, so will keep it short incase! So glad I found this site, and thank you Karen and everybody who has offered so much helpful advise. Karen, I am in San Diego, where do you get your Sandoz?

July 12, 2013 at 8:08 pm
(278) Karen Garner says:

Pauleen:

I get Sandoz at Stater Bros (in Poway) 858-486-9995. Cash price is $8.02 for 30 day supply. Most insurance companies will cover as generic to Levoxyl. If you bring them a script for Synthroid or Levoxyl, it is interchangeable for Sandoz.

Tirosint is available at Costco in San Diego for about $42.00 and not on most insurance formularies as yet. Tirosint is made in Switzerland and has been on the market for 5 years, but not too well known until 2 years ago. It comes in various doses similar to the other synthetics up to 150 mcg. There are no color codes for Tirosint. All doses have no dyes. The pill is a gel filled with glycerin and water. I tried it – it has an excellent T4 delivery. I had no negative reactions. I would have to buy two prescriptions to get my dose of 175 mcg. I decided to try other options. If you go to the Tirosint.com Web Site you can get a coupon for a free 30 day trial. Not available to Medicare subscribers, however.

All synthetic levothyroxine brands, such as Synthroid, Mylan brand, Sandoz brand, Levoxyl, have doses in 50 mcg size that have no dyes. The amount of dyes in the other doses indicate color code for each dose. Purple is .175. The amount of dyes added to the pills is large and can cause adverse reactions in some people.

Hope this is helpful. Laura, please be sure to read the entire forum.
Most of us have posted for at least 3 months and are passing info to others that took us 3 months or more to experience and learn. We want new people to have a smoother transition.

Pauline: good your doctor did not prescribe Synthroid originally. See post 102 for inactive ingredients in Sandoz T4(levothyroxine). See drugtalk.com “inactive ingredients in thyroid meds” for Synthroid’s fillers. Synthroid contains Provodone, which is iodine.

July 12, 2013 at 9:37 pm
(279) Tonya says:

Hi Karen

Thanks for the info, however I have read all the posts and have been to drugs.com. All this info is mind boggeling but very helpful; I really appreciate it. I wanted to add additioal sideeffects I have experience while on synthroid. My lips started to swell slowly I noticed it becaused I started biting the inside of my bottom lip. Then eating became difficult; it was hard to swallow my food, it felt like it stuck in the middleof my esophagus, I had to drink water to make the food go down and it was painful. I have been off synthroid 3 days and will stay off until next week. I should have my new prescription by then. I’ll keep the forum posted.

July 13, 2013 at 2:45 am
(280) Ruby says:

I wrote to Senator – Boxer go on line to http://www.boxer.senate.gov and Fox 11 News Los Angeles and Channel 4. This is scary and I feel bad for those who are suffering from withdraws. I only have a few pills left myself…This is to be taken serious. Lets take a stand. If you have time reach out to the media and your Senator. Good Luck

July 13, 2013 at 10:44 am
(281) Glenna says:

Karen,

Please contact Piney Point Pharmacy at 713-782-6212. George is the pharmacist . I will not receive the compounded meds until Monday afternoon.

I woke up today feeling like I was on board the crazy train. Found some year old Levoxyl at 67.5 mcg strength. Called the doc to get her opinion about taking it and she said give it a try. It has been 12 days since my last dose of anything. When I originally took it the dosage was too strong.
It has only been about 45 minutes since I took it, but already feel a bit of a reaction. I am such a lightweight when it comes to meds and supplements, just the slightest thing can trigger an effect in my body.

By the way, I am thinking about contacting an attorney. Did you contact someone?

We haven’t heard from c.r. in a few days. Are you still out there and doing well?

Stay strong everyone!

July 13, 2013 at 12:26 pm
(282) pauline wright says:

Karen, Thanks for the info, and the explanation on the dyes etc. I put a call into Costco (Mission Valley) and they apparently have my dose (75mcg) in the Sandoz available. I called my docs office to ask for a new script to take down there. She put me on Synthroid after the Levoxyl ran out. After a month on that it was making me feel horrible – dizzy/light-headed etc, so at her recommendation she told me to stop taking them. The Tirosint would have been good to try, but at $45.00 for 28 day supply (and possibly for a very long time), it’s too costly. It’s a big shame having to swtich like this when Levoxyl was working just fine for me for 3 years.

July 13, 2013 at 3:42 pm
(283) Natalie Siano says:

Get your asses in gear – people need levoxyl at any cost!!

July 13, 2013 at 4:03 pm
(284) Karen Garner says:

Glenna: Thanks for the phone number. I also noticed that c. r. had not posted in a while. The forum’ s author, Mary Shomon, might have access to her e mail and can check. Otherwise, I have no way of checking on c. r.

Natilie: Whose ***** do we get in gear?

July 13, 2013 at 7:01 pm
(285) Kim says:

I have been on Levoxyl for several years for Hashimoto’s. Today I took my first Synthroid. Never again. Within 30 minutes my face started swelling. Then the hives started. I have had drug reactions in the past and I have food allergies so I knew what was happening. I took Benadryl and ranitidine to stop the reaction.

After all of this happened this morning I started looking and found this website. Read the info and called my CVS pharmacy. They were clueless. They have Mylan and that’s it. Finally, I located a local small pharmacy that will order the Sandoz in for me. If not, they also compound.

This is so unfair that we have to go through this and suffer all for a company to profit. If I can help it I will never take a Pfizer product!

July 13, 2013 at 7:18 pm
(286) Karen Garner says:

Kim: Many people have had a bad reaction to Synthroid. Good to post your location and what pharmacy ordered the Sandoz for you. This will help others . Keep up posted on your progress.

July 13, 2013 at 8:27 pm
(287) Carol says:

I was using Levoxyl since 1999. When I filled the new Rx (50 mcg) for Tirosint on May 16 at Target, it was not covered by insurance (but pharmacist ordered it for me) and I paid $30.50 out-of-pocket for a 28 day supply.

When I went to Target to refill the Tirosint last Tuesday (July 9), the pharmacist asked if I still want it – the price doubled since May. The cost is now $62.50 for the same 28 day supply.

I asked why the increase and was told the manufacturer (Akrimax) raised the price. Target has always been reasonable with pricing and the pharmacist there said she felt bad that the manufacturer might be taking advantage of Levoxyl patients who have now switched to Tirosint.

I was wondering if anyone else has swtiched to Tirosint and has found the same issue.

July 14, 2013 at 5:10 am
(288) Jennifer says:

YES!!! I just encountered the same price switch through CVS. They told me it was probably my insurance company and to contact them, but I haven’t gotten around to it yet. That’s really ridiculous that they would have raised the price and begin taking advantage of us! For me, nothing else has worked aside from Levoxyl, so I am grateful to have the Tirosint and will pay whatever I have to, but it just sucks!!! Over $60 a month (not even a full month) just to feel semi normal.

July 14, 2013 at 9:44 am
(289) Karen Garner says:

Regarding price of Tirosint increases, contact your individual State Dept of Consumer Affairs.

July 14, 2013 at 10:34 am
(290) Karen Garner says:

Checked with CVS in San Diego, and 150 mcg Tirosint is now $82.00 for 28 days. It was $40 in late May when I tried it. Will check Costco price tomorrow when they are open. This is not right.

July 14, 2013 at 11:21 am
(291) Carol says:

Thank you, Karen & Jennifer, for confirming that you also have seen the the tremendous price increase. I’m in New York.

July 14, 2013 at 11:33 am
(292) Karen Garner says:

Even Canadian pharmacies show Tirosint tripled in price! Readers may consider this option: Armour thyroid by Erfa manufacturer made in Canada. Inactive ingredients are different than Armour by Forest made in U. S. A. Price could average about $20.00 per month including shipping. See northwestpharmacy.com under Armour thyroid for price info.

July 14, 2013 at 5:18 pm
(293) Kim says:

For those in the Maryland area. The Medicine Shoppe will order the Sandoz levothyroxine in. Cash price for 30 88mcg tablets is $10.33. They can also have an drug compounded.

Since yesterday was a Saturday I am waiting to get in touch with my endo tomorrow. Think I’ll try the Sandoz first and if I have problems then try the Triosint before going to compounded.

July 14, 2013 at 7:50 pm
(294) c.r. says:

hi everybody !!!! i know i havent posted for awhile i had internet issues…any way thank you all for the warm wishes im so happy i could help some of you with the information i have researched and posted…karen,glenna. doin good on sandoz i will do my blood work in about 3 weeks and im hoping my tsh levels are stable ..karen i noticed you switched back to sandoz hows that working ? when compounding you have to be careful as far as dosage you would be absorbing more of the t4 because theres less inactive ingredients for the med to absorb into…..if you feel like youre heart is trying to race or palpitations its because youre absorbing to much of the t4 drink with a full glass of water wait 30 minutes then make sure you eat it should help subside the heart racing feeling some of you are experiencing….as for armour just remember armour contains opadry white which can produce the same effects as iodine or povidone so youre gonna want to stay away from the armour with the opadry white as inactive ingredient …..stay well everyone

July 14, 2013 at 7:58 pm
(295) c.r. says:

@ carla hun just read youre post 271 where youre saying youre ordered sandoz 50 mcg because there is no dye ..this is true there is no dye but for future reference sandoz at any dose has the same dyes as levoxyl so if you were ok on levoxyl the dye shouldnt bother you … hope youre doing better ! keep me posted

July 14, 2013 at 8:00 pm
(296) c.r. says:

karen let me know how youre doing hun….

July 14, 2013 at 9:10 pm
(297) KarenGarner says:

c.r. We missed you! Glad you’ re OK.

Yes, I went to Sandoz to fill in a gap I had with getting a refill on the compounded. I got the refill finally and had compound med on last Friday. I could substitue with Sandoz, but feel better on compounded.
I don’t notice too much T4, as you mentioned on compounded . Using same dose of 175 mcg as I did on Levoxyl. I do notice a serge of T4 on Sandoz and reduce the dose a bit.

I am aware of the Opadry White dye issue in Armour by Forest made in U. S. I would definitely stay away from that brand of dessicated.

There is another Armour made in Canada by Erfa Mamufacturing. I posted info on it earlier. It has exactly the same dessicated thyroid hormones, but inactive ingredients are: Magnesium stearate, cornstarch, talc and sugar all in insignificant amounts per pharmacist at Northwest Pharmacy. Cost for 100 tablets of 90 grain is $49.95 plus 9.95 shipping. This averages out to less than $20.00 per month. The tablet can be taken sublingually. ONE day I would like to try the dessicated and that brand would be my choice. The Armour made in U. S. as well as Nature Throid and Westhroid-P all have additives. Nature Throid the greatest. Westhroid -P(for pure?) has inulin, which is ok for most but an anti inflam which would bother me. It also has lactate.

What next. Now we have the pricing issue with Tirosint. Many new people are posting and getting quickly and easily all the info they need to make their choices on Levoxyl replacement. All that time we have spent researching is producing great results!

Little help from doctors and pharmacists but all the help in the world from people we do not know and may not ever meet. Total strangers.
Our American spirit is alive and well.

July 14, 2013 at 11:23 pm
(298) Carol says:

Karen – could you share what your compounded formula is – what filler did you choose? I have been working with Women’s International (Wisconsin) for years for other compounded meds but did not have success with the T4/T3 compounded a few years ago and went back to Levoxyl. (Think it is adrenal issues with even small amounts of T3.)

I would like to try the compounded again, but just the T4. The Tirosint is okay but the price has doubled and I only feel “semi-normal” (as Kim said she does) for $62. Thank you for all you’ve done to help us and educate me – so appreciated.

July 15, 2013 at 1:14 am
(299) Karen Garner says:

You are welcome. I am dedicated to this forum.

I am using a filler of Vitamin C ascorbate acid powder compounded with synthetic T4, (levothyroxine), from Good Pharma in San Diego. They also can use micro crystalline cellulose but I found that is more potent an antiinflammatory. The #3 capsule they use needs 125 mg of filler. The Vit C is pharmaceutical grade USP and a very potent anti inflammatory. I have problems with anti inflams because I have Gentamicin ototoxic damage to my inner ears. I am resolving the issue by dosing 4-6 times a day. I split the capsule and add some powder to a glass of water 4-6 times a day until the capsule is empty. Vit C has a half life of 30 minutes, so it is quickly eliminated from our body. The smaller doses have less impact on the inner ears. When I took the dose in full in the morning, I was flat on my back for 4-6 hours with vestibular symptoms. This is OK for T4.

I have used Womans Intl Phar for many years for natural bioidentical hormones. They compound the T4 with a variety of 20 oils from which to select. They use a machine. Good Pharma hand fills the capsules. I do not know if Womans Intl compounds with Vit C powder. Good Pharma telephone is 858-488-9000. I believe they ship out of state.

Womans Intl Phar will be affected if the Bill for the FDA to take over overseeing all compounded pharmacies is voted in. Smaller pharmacies such as Good Pharma will not be affected. See post 264 for info on how to vote against this bill.

There is no need to add the T3 unless your body will not convert the T4 properly to T3. T4 will break down in the body to T3 and blood work will show if it is doing so in correct ratio. Levoxyl was straight T4.

Karen

July 15, 2013 at 4:02 am
(300) Karen Garner says:

c. r. You are right about dye. The 25 mcg Levoxyl would have the same dyes as Sandoz.. The type of dye varies with dose… the amount of dye in each tablet is significant per my pharmacust at Good Pharma. The package insert on Sandoz has the dyes listed for each dose.

This is my thinking about Carla’s 50 mcg no dye dose: if you can avoid dye, I would. I would have also opted for the 50 mcg to cut in half. This way, Carla gets 15 tabs of the 50 mcg each month. When she takes a half tablet she is getting 50% LESS of the 4 inactive ingredients of Sandoz. Plus no dye. IN my case, I would need 3.5 times the 50 mcg of Sandoz no dye pill. That gives ME 3.5 times more of the 4 inactive ingredients. I would prefer to take one pill with dye than 3.5 pills with no dye and 3.5 times the other ingredients. Now this gives ME an idea. I could get the 300 mcg dose of Sandoz , cut pill in half each day to get the 150 mcg dose(I do better on a little bit less than 175 mcg Sandoz). I would also be getting 50% LESS inactive ingredients, but still getting some dye. If I have to lean back on the Sandoz again for whatever reason I will do that. I do very well on the compounded T4 with Vit C in divided doses of the pill over the day. I think in my last life I lead a wagon train to the West.

July 15, 2013 at 3:54 pm
(301) pauline says:

I am just waiting for my endo to get back to me with a new signed script for Sandoz. I have been on the generic levo before and it did not work for me, but I I’m willing to give the Sandoz a try. Does anybody know if the difference in WHERE this is bought could still have a filler difference?

July 15, 2013 at 4:40 pm
(302) glenna says:

c.r. Sister you posted just in the nick of time! This very moment I received my first bottle of compounded T4! Being the light weight that I am, my body really reacts to meds and supplements in strange ways.

I was concerned about the level of T4, though I am taking the 62.5 dosage, same as the levoxyl, but now realize the levoxyl wasn’t always uniform. I will be certain to drink plenty of water and eat within 30 minutes to alleviate possible heart palpitations.

Here is a new question for you and Karen…since Saturday I’ve been taking some old levoxyl I had at 67.5 strength. I had to cut off a bit as that was way too strong for me. Do you recommend not taking anything for a day or two before I start the compounded stuff or just dive right in and take it first thing tomorrow morning?

TO EVERYONE ON THE BLOG – If you are ever in the Dallas, Texas area and need a place to stay, please let me know. I certainly appreciate everyone’s comments and help these past few weeks.

My best to all of you!

July 15, 2013 at 5:37 pm
(303) Karen Garner says:

Glenna: I would ask that question of both your pharmacist George as well as your doctor. You might ask your doctor about this option: You could always pull capsule apart and put half dose in a glass of water for first dose and build up gradually over a couple of days. I notice that compounded is a very “soft” medication. The formula they use today for synthetic levothyroxine is bio identical to what the body makes and is accepted by the body as such.

Keep us posted.

July 15, 2013 at 5:48 pm
(304) Karen Garner says:

To Pauline:

You should not need a new written script from your doctor for the Sandoz. . If you have refills on your generic, the pharmacy can fill the Sandoz on that script. The script written for Synthroid or Levoxyl is automatically interchangeable at pharmacy for generic levothyroxine (Sandoz or Mylan) and vice versa. As long as you have refills available. They are not interchangeable for Tirosint or compounded synthetic levythyroxine or dessicated.

July 15, 2013 at 5:54 pm
(305) Karen Garner says:

Pauline: No there is no difference in fillers on Sandoz(or Synthroid or Mylan) if you buy it in New York or CA , Texas, or Alaska or any other place in the U. S.

July 15, 2013 at 6:14 pm
(306) Karen Garner says:

If your generic script has expired, then of course you will need a new script.

July 15, 2013 at 6:45 pm
(307) c.r. says:

glenna hi hun how are you ??? yes definetly wait in between switching meds !!! i would say 72 hours atleast,,,,, this way youll be symptom free from youre previous med….now anytime you switch a thyroid med you may experience temporary side effects ….and yes if you experience heart plapitations make sure you eat after 30 minutes of taking the med with a full glass of water…keep me updated girly good luck to you

July 15, 2013 at 6:46 pm
(308) Laura says:

I just filled my first prescription since my levoxyl ran out today. My internist prescribed levothyroxine, which the office told me is simply the generic. I asked at Walgreens and they told me it was manufactured by Sandoz but when I got the bottle it is labeled as Lannett. I went to their web site and the pills are actually manufactured in NY by Jerome Stevens Pharmaceuticals. Does anyone have any information about this formula or how consistent they are? I don’t think Ive seen it on this blog.

July 15, 2013 at 6:54 pm
(309) c.r. says:

pauline the difference is in the brand of the generic ….there are several brands of generic levothyroxine…the sandoz brand is the closest to levoxyls inactive ingredients….mylan and synthroid contain povidone which may stimulate growth instead of supress it…..plus other fillers as well which are not in levoxyl or the sandoz brand of levothyroxine hope this helps….

July 15, 2013 at 7:02 pm
(310) c.r. says:

laura there are many brands of generic lannett is one of them …sandoz is the closest to levoxyl…….mylan has povidone which may stimulate the thyroid instead of supress it…lannett has lot of fillers i would stay away from it has 7 inactive ingredients more then any other generic ……mylan has 6 …..sandoz has 4 and levoxyl has 3 …..

July 15, 2013 at 7:49 pm
(311) colleen says:

I have been on levoxyl for 12 years doing pretty well, my last presciption filled was generic levoxyltrine, (Unithrioid) , after 3 day I developed hives,heart palpatations and headache, the pharm. told my doctor that is not possible, I stopped taking this and all symptoms went away, now am told that synthyroid is to expensive, I checked on line I can get it at walmart for 10 dollars for 30 , that does not sound expensive to me. also the pharmasist says does not know how to dose armour thyroid thought it might be something to try. what can I do, I have hypothyroidism, I live in a small , small town, nearest endo, is over a 120 miles away. any suggestions, maybe change pharmasist. Help.

July 15, 2013 at 9:44 pm
(312) Karen Garner says:

Laura:

I have not read any discussion on this forum about the Jerome Stevens Pharm Co levothyroxine. It is manufactured under the name of Lannett. I will get info on it from my pharmacist tomorrow and report back. You can get the inactive ingredients in it on their Web Site, “Levothyroxine, Jerome Stevens Pharm. ”

Levoxyl is levothyroxine sodium. So is Synthroid, Sandoz, and Mylan. Levoxyl and Sythroid are brand names, Sandoz, Lannett, and Mylan are manufacture names and considered “generics”. Sandoz is closest to Levoxyl in inactive ingredients and does not contain iodine(Providone). You should be able to take the prescription back to Walgrens and ask why you did not get the Sandoz which is what you asked for. Costco usually carries it -are you near a Costco? I do not know where you are located. Are you post 277?

I definitely do not recommend Mylan or Synthroid.

Keep us posted – we are here to help.

July 15, 2013 at 10:18 pm
(313) Karen Garner says:

Colleen:

See my post 299 on the Armour thyroid made in Canada. The U. S. Armour made by Forest has many additives. I would consider this Canadian Armour a viable option for you. The pharmacisit at Northwwest pharmacy can advise you on dosing if your current doctor is not adequate. Always stop any thyroid med immediately if you experience heart palpations and or hives . The U. S. Armour has an Opadry White dye in it that can mimic iodine -see c.r. posts above.

July 15, 2013 at 11:10 pm
(314) Carol says:

If anyone wants to try the Tirosint, there is a coupon on their website that worked for me. Pharmacist ran it through the system today and I got a free 28 days of Tirosint. I paid $30 for the 1st month (June) and thought that was high but it was worth it to try to feel better.

When I went to refill the Tirosint and the cost doubled, I called the Tirosint customer service # on the website (to ask why?) and they said there was a coupon that would be good for $27 (one time only) toward the $62. It turned out the coupon qualified for a free month of Tirosint. I am so grateful for the savings – I wanted to keep taking the Tirosint until I can do the labs for the endo in mid-August. Curious to see how effective it is or is not in comparison to my long term experience with Levoxyl.

I also checked the price of Sandoz at the Target pharmacy (NY). Just for future reference since the Tirosint is too expensive long term. It is $4/month and $10 for 90 days. Thank you all so much for sharing. I feel so much better about all this – I was so frightened last week. I’m also a type 1 diabetic (dx at age 5) on an insulin pump and take compounded HT for other issues so it is just so overwhelming. I’m very tired but hopeful. Thank you : ) I am looking forward to reading all your comments an learning from your experienceswant to stop the Tirosint until I could do the labs. e script was “free”. the $62 out-of-pocket (not covered under my insurance) was called the Tirosint customer service # from their website about the increase in cost and they said to bring the coupon information from their site to my pharmacist went to pick up my 2nd month of Tirosint at the Target Pharmacy today and gave the pharmacist the coupon information

July 15, 2013 at 11:19 pm
(315) Karen Garner says:

Readers, please note that the half life of levothyroxine is 6-7 days so if you are switching to something new 50 % of the old med will still be in your blood stream 6-7 days later so it is very difficult to differentiate symptoms from one med to another. All the synthetics have the same molecular formula of levythyroxine. The differences in meds lie in the different inactive ingredients.

July 15, 2013 at 11:36 pm
(316) Carol says:

If anyone is on Tirosint or considering trying it – the Tirosint website has a coupon code you can use toward a month supply. It worked for me today.

I called the cs # for Tirosint to ask WHY the double increase in price recently and they suggested I try the coupon to get $27 toward the cost. I brought the coupon to the Target pharmacy today and this month supply was NO cost (free). Free! Just wanted to share that there is a coupon and it worked. A one-time coupon but it saved me a lot. (Grateful.) Hope if anyone is on Tirosint or wants to try it, it also works for you.

I also asked about Sandoz – cost is $4/month or $10 for 90 days at Target (New York).

July 16, 2013 at 3:26 am
(317) Ruby says:

Everyone on here please reach out to Pfizer write letters and emails. Write to your Senator, Local Media and Attorneys etc. I have done all of the mentioned things. Maybe if we make enough noise people will start to listen. Pfizer contact http://www.pfizer.com 235 East 42nd Street
NY, NY 10017

Phone: 1-212-733-2323

If you go onto their website, go to “Contact Us’ and send them an email. This is really scary. I am so sorry for all of you who are going through such a horrible experience. I am praying for us all.

July 16, 2013 at 10:59 am
(318) Karen Garner says:

Glenna: spoke with George this morning at your pharmacy. They use either Methocell or Avicel as filler for the compounded synthetic Levothyroxine.

July 16, 2013 at 12:26 pm
(319) c.r. says:

DONT FORGET TO REGISTER AT …. LEVOXYL.COM….

July 16, 2013 at 1:30 pm
(320) Karen Garner says:

For readers interested in dessicated thyroid – see “mercola.com, Armour thyroid formulation differences between new and old. ” This pertains to the Forest brand made in the U. S.

July 16, 2013 at 3:05 pm
(321) Carla2013 says:

Hi everyone. I’ve started taking the Sandoz generic four days ago. It’s early days yet, but so far so good. My energy level is not as stable as when I take Lavoxyl but neither am I having issues with a racing heart, headache, constipation, weird cravings, or heavy brain fog like I did taking Synthroid. We will see how it progresses.

I enjoy reading the post here so much. I’m so grateful everyone takes the time to let us know how they are doing on the different meds, and for sharing of their research and knowledge. You are lifesavers!

Thanks.

July 16, 2013 at 6:50 pm
(322) pauline says:

Picked up my Sandoz today from Costco (San Diego). It was $6.59 for a 3 month supply. I did try my closest pharmacies FIRST (Ralphs, CVS, and a couple of other closer places to me, but I ended up driving to Costco because it was the only place that seems to have the Sandoz, all the others had Mylan ONLY. I’ve been off meds for a full 12 days now and starting to feel unwell, so lets hope these work! Good-luck all, will keep you posted.

July 16, 2013 at 8:21 pm
(323) Karen Garner says:

We will anticipate good reports! Keep us posted, Pauline and Carla.
Carol, thank you for the info on Tirosint. C. r., are you continuing to do well on Sandoz? You must be on it about 3 wks?

July 16, 2013 at 8:34 pm
(324) c.r. says:

karen its been just about 4 weeks on the sandoz about to finish a full script will check TSH at 6-8 weeks…….doing well ….hows the compound with vit c working for you ? still okk ?

July 17, 2013 at 1:06 am
(325) Karen Garner says:

Hmmmm, just thinking. Ever wonder why more women are on this forum than men? This is possibly one of the reasons. Hashimoto’s disease affects seven times more women than men, and Graves Disease affects 10 times more women than men. Could hormones have a bearing on this.? What are your comments ladies?
I think this will be a great discussion!

July 17, 2013 at 4:14 am
(326) c.r. says:

its all about hormones!!!!! the thyroid controls every hormone in youre body…..

July 17, 2013 at 4:43 am
(327) cabro says:

Be careful with Tirosint. It is not for everyone. I had heavy absorption. T4 skyrocketed and TSH plummeted. The worst part was the awful burning in the lower GI that was 24/7 while I was on it. The last 2 weeks on it, I took a Levoxyl on two separate Sundays to see if it made a difference. It did. The gut burning stopped for 36 hours. I finally gave up on Tirosint, because I felt so awful from the burning. It’s 3 months later and I’m going to have to have a colonoscopy to see what damage was done. New GI problems have continued, even after going off Tirosint. Buyer beware. Just my 2 cents.

July 17, 2013 at 7:05 am
(328) Karen Garner says:

Actually, the thyroid gland AFFECTS every cell in your body. The thyroid gland itself is controlled by the pituary gland and another gland in your brain called the hypothalamus. They all work together. When the thyroid gland is off, it affects every cell in your body, but it does not control any other gland.

July 17, 2013 at 8:36 am
(329) Karen Garner says:

c.r. I verified that information with Mayoclinic.com. The thyroid gland does have total control over our metabolism. I am sure all of us at one time have felt that the thyroid gland has total control over our entire lives.

July 17, 2013 at 9:06 am
(330) Karen Garner says:

In both Hashimoto’s and Graves Disease, our body attacks the thyroid gland as if it were a foreign substance. In Hashimotos, T lymphocytes invade the gland and cause inflammation which eventually destroys the thyroid so it does not produce enough hormone. Both of these diseases are called auto immune diseases. The underlying cause of Hashimotos is unknown. There are certain factors that contribute to Hashimotos Disease. They are 1) genes, 2) sex hormones, 3) over exposure to iodine, and 4) exposure to radiation. Some women develop thyroid problems when they are pregnant which go away after delivery , and 20% of those women develop Hashi in later years. There are some theories yet proven that suggest too much estrogen as a factor. Thus the stats that 5-10 % more women than men get Hashi and 10% more women than men get Graves. All this can be verified at Mayoclinic.com.
A discussion on About.com on thyroid would not be complete without discussing the causes, even though most of you have already explored the causes of your disease on the computer judging by the extensively thorough and educated comments in this forum.

July 17, 2013 at 9:28 am
(331) Karen Garner says:

Graves is also an auto immune disease where our body attacks the thyroid gland as if it were a foreign substance. The difference between Hashi and Graves is that the auto immune system attacks the gland and causes OVER production of thyroid hormone, thus hyPER thyroidism and although the underlying cause is also unknown, 80% of Graves Disease cases are inherited and related to gene factors. It is very very rarely a life threatening situation. There are again some unproven theories about the estrogen factor – 10% more women than men get Graves . All this can also be verified on Mayoclinic.com.

My goal is to make sure no one on this forum has to go through what I went through this past 3 months and that all have as much info as possible available at their fingertips.

July 17, 2013 at 10:00 am
(332) c.r. says:

the thyroid produces 2 well actually 3 hormones we better know them as T3 AND T4 ……the main job of the thyroid is to produce hormones…the thyroid regulates the production of thyroid hormone which affects youre metabolism……..and actually the parathyroid which produces hormones as well effects the minerals in our body and is NOT controlled by the pituatary gland at all ……we check our TSH levels which means thyroid stimulating hormone to make sure we are producing enough hormones to feed our metabolism…..this is why we take meds with T3 AND T4 in them they are hormones …..youre thyroid runs on hormones not cells….i didnt look this up on a website i studied it in med school…rush presbytarian medical school in chicago….

July 17, 2013 at 11:06 am
(333) Carol says:

Thank you, Karen, for your goal to make sure we have as much information as possible. I feel so alone (and scared what is happening to me) with this and it helps to know you all share how you are dealing with this. Cabro, I do have a similar gastrointestinal side effects with the Tirosint that you had. I told the endo last week and he said “there is no way that is from the Tirosint, It has to be something else”. He also would only order the TSH and told me to wait until the end of August to get the labs but I’ll ask the primary for help with the other labs and do them sooner. And then make a switch to the Sandoz. And if that doesn’t work, I’ll ask the primary for help with the compounded.

July 17, 2013 at 11:30 am
(334) Glenna says:

Good morning to all. I am on day 2 of compounded meds… Yesterday I ran the gamut on emotions, felt a bit dizzy, anxious, a tiny bit of tightening in chest, and somewhat lobotomies, could that be a good thing

Today, I still have some weird feelings in my head, slightly less of the lobotomy feeling, so an improvement I suppose.

My doctor advised me not to observe a waiting period between meds…these poor physicians really only know what they’ve been taught, though I do feel my doc really thinks out of the box on most occasions and is willing to try anything that will work.

Those of you with low energy and muscle pain etc. if you haven’t tried t3 I would highly recommend it. As I am such a weirdo when it comes to meds I could not take cytomegalovirus, but have an excellent compounded version made by the same people who are making my t4.. I’ve been off the t3 while searching for a new medication, but intend to start back tomorrow and see what happens.

I’m am starting to believe that the 62.5 mcg may be too strong for me due to the chest tightness and tight feeling in my head.

I have an appointment with an endo guru in Houston next week. He is the same doc who put me on the path to wellness with levoxyl, hoping he has some new tricks up his sleeve. If I learn anything new I will share with the group.

Karen, as for hormones, when I started using the vivelle patch for estrogen my thyroid issues greatly improved., that was two years ago. I had a full hysterectomy including ovaries. I realize hormones are not for everyone but I was on the verge of driving the car into the garage. I even credit the estrogen with lessening the effects of the nonsense we are all dealing with now.

Wow sorry to ramble on so much. I send my highest and best thoughts of peace and healing to each of you.

July 17, 2013 at 11:34 am
(335) Glenna says:

To everyone using compounded meds…
If you haven’t contacted your senators regarding your right to use compounded hormones do so immediately as it goes to a vote today.
Thank you.

July 17, 2013 at 1:43 pm
(336) Carol says:

My endo wrote a lab script for the TSH. What other tests should I ask for to get the complete picture and not just the TSH? Any information from your own experiences would be greatly appreciated. Thank you!

It’s almost a month since I started on the new T4 and want to do the labs soon. I don’t see the endo until mid-September and do not want to wait that long to see what is going on.

July 17, 2013 at 1:51 pm
(337) Karen Garner says:

Carol:

Did you report your Tirosint symptoms to your pharmacist? If they persist and if it were ME I would stop the Tirosint. Can you ask your primary about symptoms when you get the labs? Others have reported the same symptoms. You are never alone.

Glenna:

It is my understanding that the T4 converts into T3 in the blood. Your pharmacist can confirm this. And that you should not need a T3 supplement unless bloodwork shows that the T4 is NOT converting into the proper ratio of T3 in the blood. Can you check with your doctor before adding T3?

Did you ask your doctor about the option of taking a half dose per day and gradually increasing it? The capsule can be split and powder divided into two doses.

With chest tightness and dizziness if this were me I would ask for a circulatory/heart evaluation. There is a 99.9999% chance you are OK, but better safe than sorry. A simple EKG might be all that is required. Or echo cardiogram. This could also be allergy. I have a tendency to forget to drink water and I get dizzy.

July 17, 2013 at 2:51 pm
(338) Karen Garner says:

Carol: See Thyroid.com, Thyroid, Key Thyroid Function Tests, by our Forum author Mary Shomon. I sent you another message, don’t know what happened to it. It takes sometimes an hour for it to come up. If it were me and the Tirosint symptoms continue I would stop the Tirosint.

You can do the basic metobolic temperature test. You take your temp under your arm when awakening in morning for 3-7 days to get an average. It temp is under 98.6 you are below normal thyroid. You could have soreness under arms, confusion, forgetfullness.

July 17, 2013 at 3:04 pm
(339) Carol says:

Hi, Karen – yes, I did report it to the pharmacist on Monday. He has no other patients on Tirosint. He said he can get the Sandoz for me. I will go get that tomorrow,

July 17, 2013 at 6:22 pm
(340) Karen Garner says:

c.r. It sounds like you are referring to me when you refer to someone out there who reads the Internet and puts out information. It surprises me that you said that. You said you were a rehabilitation nurse. I told you my background.

II have an MD Degree as well as a PhD in Biology , am now retired after 40 years of work. Some of the info you are putting out there is not correct, such as : there are 3 thyroid hormones, and then you mention two. There are five thyroid hormones, T4, T3, T2, T1, and
calcitonin. The only way you can get all 5 in one supplement is with the dessicated thyroid. There is no synthetic that provides all 5.

Also, the Synthroid, Mylan, Sandoz, Lannett levothyroxines are all straight T4. The T4 is supposed to convert into the appropriate amount of T3 in the body. When the T4 does NOT convert into appropriate amounts of T3 as it should a patient would be prescribed T3. This inbalance would be reflected in the blood work. The T3 can be compounded into Glenna’s new med, but it was not scripted to it, from what Glenna told me it is straight T 4. I knew nothing about her previous script for T3 and let her doctor decide what to do, you do not, I believe, have the qualifications to tell her what to do. Neither of can practice medicine legally over the Internet. I have been making a point of NOT telling anyone what to do unless I use the term “If it were me”.

I believe in backing up any techical information I share on this forum with a reliabe Internet source for the info. I have asked Mary Shomon to review all the posts both you and I have posted,let her decide what is correct and not correct. This is, after all,
her Web Site. She has many many years as a thyroid health advocate and is very well respected in this area.

July 17, 2013 at 7:16 pm
(341) Anne says:

Thanks for all of your help here. I had been using Levoxyl for 5 years since thyroid cancer surgery….never a problem. Tried Mylan and Synthroid…..bad reactions.

Special orderded Sandoz at Rite Aid Pharmacy here in Orange County, CA. Took two days to receive. Trying it today for the first time. Best of luck to all.

July 17, 2013 at 7:47 pm
(342) pauline says:

First day on Sandoz (50mcg). Felt light-headed and mild headache, but I’m putting this down to the adjustment. I had been off the meds completely for 13 days, so perhaps my body is adjusting to being back on the meds. Will keep you posted.

Again, thankful for all the wonderful input and support here!

July 17, 2013 at 8:26 pm
(343) glenna says:

Hi ladies,

I was prescribed T3 two years ago this month, it changed my life. Brain fog left, joint and muscle pain was gone, had energy and it caused my TSH to lower. I was actually low in T3. In May, my TSH was 1.00 and my T3 was at perfect level, too, but I do not recall what that was.

I still have my thyroid, thank God!

As for the compounding meds, I tried the Mylan – bad reactions; Synthroid bad reactions; Sandoz caused my blood pressure to skyrocket and constantly had chest and upper back pain, including swollen lips and throat, numbness in my limbs. Doc said to stop using it; also tried Tirosint but it caused my stomach to feel as though it would explode.
That is why I went to the compounded meds.
The same pharmacy that makes my t3, which I have never had a problem with even on the first day taking it, also did my t4. It has the same slow release filler. I can not take Cytomel.

I have had some major mood swings today, I am not a moody person, and have felt extremely negative, I am not a negative person. Some major psychological weirdness.
Never at anytime in the past, have I had such issues with thyroid meds. They may not have worked effectively, until levoxyl, but I never experienced such horrible reactions. It is really beyond my understanding.

I feel much better this evening, but not good.

My physician wants me to continue this dosage and see what happens. I asked her if she wants me to start the t3 tomorrow, but haven’t received an answer.

July 17, 2013 at 11:57 pm
(344) c.r. says:

lol ladies if youre doctors were so on point with youre treatment you wouldnt be up on this forum looking for answers !!!! youre doctors have not informed you well with information neither did mine and thats why we participate in forums to seek the answers we do not have including myself!!!! ….

July 18, 2013 at 8:56 pm
(345) Ed says:

Karen and c.r. have both provided valuable information on this forum. I would hate to see it fall apart now because of our hormones out of wack.
I was finally diag hypo in Dec 2012 about 10 years late. Synthroid was provided as a starter sample then went to generic Levothyroxine. Which gave all symptoms everyone else is experiencing. End put me on Levoxyl around March 22, I had a good run of 30 days, felt good for first time in years and gone, off the shelf for some reason that has to be a big lie. I tried Synthoid again for about 2 weeks until I got to sick and missed work for 2 days to recover from the poison I ingested hoping to feel better. I haven’t taken any meds since until I can locate a Dr who will prescribe Erfa and possibly address an Adrenal fatigue/exhaustion problem complementing my Hypo condition. My point is I’ve done much reading trying to learn the why and hows of. This site was the first I found and very friendly and informative. I check back daily. I’m not an Internet poster, kinda shy and private until I saw the rift on here. So please let’s stick with this and support each other in this engineered crisis. This too shall pass. Sooner rather than later we can only hope. Peace

July 18, 2013 at 11:17 pm
(346) Karen Garner says:

Ed:
Yes I hope others KEEP SHARING. According to my research Northwest Pharmacy in Canada has the best price on Erfa Armour thyroid. You can get their toll free number off their Web Site northwestpharmacy.com in case you have not already done that.

My last trial of Sandoz produced a rash that the first trial did not. Also noticed severe depression. The compounded with Vit C powder has excellent T4 delivery and I am tolerating it but not without some discomfort. Levoxyl where are you?

I get over unkind words spoken of me quickly. I did not tell anyone to stop taking their meds for 2 weeks. C.r. must have misunderstood me. I said that due to the 6-7 day half life of T4, it does not get out of the body completely for at least 2 weeks or even more.

Did you note that Erfa Armour has only magnesium stearate, cornstarch, sugar and talc as inactive ingredients? AND it is designed to be taken sublingually. The Canadian pharmacist told me their clients do very well on it. I hope that one day the mag stearate will be eliminated from all meds. It is on Prop 65, CA, as a cancer toxin. It is only used as a coating to slip it through the machines more quickly and economically. It is my opinion to avoid as many inactive ingredients as possible.

Just for the record, I never got a license to practice medicine, I did medical research.

Carol, Glenna, Pauleen, Carla , all of you, and Ed(welcome) keep posting your results. Many others will be coming to this forum, and THEY will need you . Let’s get rolling!

July 19, 2013 at 1:12 am
(347) nivia olland says:

I really don’t know where to start. It must be over 20 years since I was diagnosed with hypo thy and always took Synthroid. Years later I took Cytomel 5 and synthroid 100. Well I have been living in Puerto Rico for 7 years and could never get the cytomel, could not afford the synthroid so they did give me both the levothyroxine and levoxyl. I actually found I had bad joint pain , could not bend my knees without having something to help me back up. So I switched to synthroid which now because of the problem getting generics I can get on my plan. But my hair is falling out especially when they upped me to 200 now I myself lowered it to 150 and the dr later changed it to 125. Not trusting the dr’s here too much no quality care or bedside manner. Still my hair is a little better but still falling out and very dry. I am always feeling like I have ants on me crawling. So now I’m not sure what to do. I am taking the synthroid 125 for 3 months or so and the tests come back fine my dr tells me. Being here in Puerto Rico I can go to the small pharmacies without a script to change this for myself anytime of course I might have to pay more without using my plan. Also I used to be constipated all the time then it got much better, but now I am constipated again. My chest feels tight also. My neck where the dr originally said I had a goiter it bothering me and feels funny. The dr’s are constantly changing where I go and now I have a new dr. Help where did everybody go on the forum. Also I did not know about the shortage dr didn’t bother to tell me neither did the pharmacy. But again I am not in the states and healthcare here is not good at all.

July 19, 2013 at 1:50 am
(348) Anne says:

Second day on Sandoz….too soon to tell, still have leftover reaction from Mylan. Today I called a Compound Pharm. (in case I’ll need to use them) I was told that for T4 they only use one filler, Avicel? Anyone have feedback? Thanks!

July 19, 2013 at 3:23 am
(349) cabro says:

@Carol: I’m sorry Tirosint is bad for you, too. My friend has conjectured about the gel, saying, “For a few the gel caps are always going to be an issue as some gelcap makers use gelatin with high glutamic acid content and that forms a monosodium glutamate (MSG) molecule in the presence of any sodium which is pretty much everywhere including the stomach.
But it isn’t MSG; it is something that forms MSG basically.”

Whatever the cause, my system was like a “smoldering volcano,” as another friend said. I have intolerances to many medications and theorize that my long life with multiple illnesses and medications has caused a sensitive gut, to be brief. I’ve come up with enough leftover Levoxyl to get me through at least 6 months, I hope. And I hope we all have some new hope by then.

July 19, 2013 at 3:33 am
(350) cabro says:

@Karen Garner: You posted, “No there is no difference in fillers on Sandoz(or Synthroid or Mylan) if you buy it in New York or CA , Texas, or Alaska or any other place in the U. S.”
I respectfully disagree with you. The T4 is no different. But the fillers **are** different.
Inactive Ingredients in Synthroid: acacia, confectioner’s sugar (contains corn starch), lactose monohydrate, magnesium stearate, povidone, and talc.
Inactive Ingredients in Mylan levothyroxine: butylated hydroxyanisole, colloidal silicon dioxide, crospovidone, ethyl alcohol, magnesium stearate, mannitol, microcrystalline cellulose, povidone, sodium lauryl sulfate, sucrose.
Inactive Ingredients in Sandoz levothyroxine: Magnesium Stearate, NF; Microcrystalline Cellulose; Colloidal Silicone Dioxide; Sodium Starch Glycolate.

July 19, 2013 at 3:34 am
(351) cabro says:

That does not include the color additives.

July 19, 2013 at 3:44 am
(352) cabro says:

@Karen Garner: I apologize. I misinterpreted your post. I realize now you were saying the fillers are the same for each of the drugs, regardless of where in the US you purchase them.

July 19, 2013 at 9:30 am
(353) Karen Garner says:

Cabro: I did not express myself thoroughly on that issue. Sorry. I had the worst symptoms on Mylan. I was nervous and shaky and irritable. And butalyatedhydroxyanisol is another toxin listed on Prop 65 in CA. The amount in pill is within safe consumption, but…to qualify for within safe consum. only 1 in 100,000 people would get cancer. How long it takes to build up to dangerous don’t know, but still that is scary. In C A the prescribing physician is supposed to warn patients of any Prop 65 toxins in meds- that also includes mag stearate, calcium stearate. Do they do that? No . None of my docs even knew what the inactive ingredients were. I have to trust the doctors but I still question all their directions.

Ed: that must have been a difficult 10 years of undiagnosed hypothyroid. However, the strongest steel survives the fire. Now you are on the right tract , I am not going to be defeated by all this. By sharing we not only learn from each other, we benefit psychologically .
Cabro, sorry about multiple illness/meds. Again, the strongest steel survives the fire. I have searched all my hand bags, drawers, the floor, my luggage,even the garbage cans, for some left over Levoxyl. I even considered trying my collie’s thyroid med until I learned it was Synthroid.

Anne: Avicel is microcrystalline cellulose. See you later.

July 19, 2013 at 10:30 am
(354) Karen Garner says:

That is a joke about the dog thyroid. It is NOT meant for human consumption.

July 19, 2013 at 2:17 pm
(355) Lucien B says:

Ed:

Woman’s Intl Pharm will send you a list of practioners in your area that prescribe dessicated thyroid. Number: 1-800-279-5708.
Don’t let the “Womens’ stop you – they prescribe for men as well.

Lou

July 19, 2013 at 4:30 pm
(356) Bonnie says:

I’ve been reading the comments on this forum and the “everything changes” forum. When I don’t reply it is because I am so scared inside in trying (as others are doing) other thyroid meds to get that well feeling back that I had with Levoxyl. It’s all so frightening what are bodies are having to go through because our medicine is not available. I have 3 Levoxyl pills left and I want them so badly because I know my body desperately NEEDS them. I haven’t taken them because I know after 3 days I have nothing worthwhile to take. All the other pills really suck with their horrible side effects (at least in my body). If I go into specifics with the medications, it could be a LONG post. The medications feel worse then the disease with inflammatory issues, headaches, heartburn, palpitations, rashes, etc., etc. For me it only takes one pill to see the writing on the wall. I may stop that pill if its severe enough. When Levoxyl comes back, these pills are all going in the trash where they belong. I don’t laugh too much lately, so its humorous to vent about pitching pills in the trash.

Today, I went to see someone else in the medical field (my husband got a referral from his workplace). Like many of you, in my struggles with endocrinologists and doctors, they offer the basic synthetic thyroid pills and, live with it or not. Today, the woman I went to see listened and they made me a compound T4.

At this point i am of leary of any thyroid meds because I know it’s not going to be exactly as Levoxyl in my system. With all my medicine sensitivities, reading the forums, and investigating over the Internet I want to know what is in the medicine so I don’t get really sick. I asked the pharmacist about the choice for compounding and he told me the veggie cap (microcrystalline cellulous) and the filler is the same with levothroxine. He said its hypoallergenic. I asked him if he would work with me, with the capsules and he said he would. We’ll see.

July 19, 2013 at 4:36 pm
(357) Bonnie says:

I won’t take the gelcap because with Tirosint I couldn’t tolerate the gelcap. Bad Inflammatory issues that were scary. I don’t know if I can take this either, but I can take it out of the veggie cap and mix in water (I asked). I will be taking 60 mcg. (I took half of a 125 mcg. With Levoxyl to get 62.5 mcg.). I did not get the timed release capsule this time around.

I have lost 10 lbs though through all this misery of wrong doses and doctors guessing, and mostly the wrong medication. The pills that are dye free can still give me thrush (50 mcg generic snd Synthroid gave me a lot of thrush,dry heaves, and swallowing problems). Tirosint totally dried out my tongue while taking it. :(

It’s been doctors, labs, and very costly to try and fix myself as many of you can relate, I’m sure. My TSH won’t become balanced until I consistently take a medication that is helping me, which is the challenge (many can relate). Three months ago I was perfectly fine and I miss that so much.

I’m sure I had more to say, so wish me luck with the compound. Options are getting pretty slim. Haven’t tried natural thyroid yet, but I’ll have my T3 checked before doing that. I’ve never had my T3 checked. Never had to think so hard about anything like this. Very sad indeed.

Yesterday I called Pfizer again (call once a week) and broke down crying. I told them people including myself may die because the medicine we take for life isn’t available. I was pretty distraught and the woman kept saying, “I’m so sorry”! I said we need it NOW, not 2014. I asked her if other people have called about it and she said yes they have and they are trying to resolve the issue. Sigh ., I contacted two locsl senators and emailed 8 on your side. Doing all I know how to do. This is my update.

July 19, 2013 at 8:52 pm
(358) Bonnie says:

Was it you Karen Garner that mentioned you took your compounded medicine out of the capsule and mixed it in water? How did that work for you? On the side if caution I’d rather do that (in case the medicine is really strong). The capsules are kind of big too (thought they might be smaller).

July 19, 2013 at 11:53 pm
(359) Karen Garner says:

Good Evening Bonnie:

Yes. I am on compounded T4 with Vit C filler and I pull the capsule apart and put powder in water. OK per pharmacist.
I have been on compounded T4 since June 4. I started with micro crystalline cellulose as filler. I have capsule size 3 that uses 125 mg filler. Now on Vit C powder filler . The microcrystalline cel and Vit C powder do not interfere with absorption of T4. I have damaged inner ears, so I had some reaction from the inflammatory action of both, but now on the Vit C filler everything is adjusting and I am doing better every day. I want so desperately to make this work. I am also being treated for middle ear infection and the other what I thought were inner ear symptoms ccaused by med have gone away. Wha La!

I understand what you have gone trhough as I have experienced the same. My heart goes out to you. My prayers as well.
I hope the new med will work for you. There are still options out there.
There are other fillers available at 2 other compounding pharmacies I know about. I mentioned them on previous posts. I will look them up and get back with you tomorrow morning. I just learned about an Armour thyroid made in Canada. See post 299. The U. S. Armour, Nature throid, and Westhroid P have additives.

There is another synthetic. T4 today called Euthyrox by Merck and is from GERMANY! The inactive ingredients are cornstarch, croscarmellose sodium, Magnesium stearate, and lactose monohydrate. Number 2,3 are in Levoxyl. They are in minimal amts.

I think tho this new med will work for you. Keep us posted.

July 20, 2013 at 12:24 am
(360) Karen G says:

Laura RE post 310. None of the pharmacies in my area dispense the Jerome Stevens levothyroxine. The brief explanations I have received have been that Jerome Stevens has had some ethical or production issues. Know nothing more.

July 20, 2013 at 6:56 am
(361) Karen G says:

Bonnie:

Alternative filler info:

See post 143, 105,155,259,
Women’s Intl Phar 1-800-279-5708 compounds T4 – they have a selection of 20 different fillers, all oils – olive, peanut, canola, Vit e, are 4 of the selections. AS of last month their cost was $26 per 30 day supply incl shipping.

July 20, 2013 at 10:48 am
(362) Lucien Berardo says:

Ed: I have checked Northwest Phar in Canada about Erfa Armour thyroid for my wife, and they cannot guarantee a delivery sooner than 2-4 weeks. You mentioned you were off med until you found a doctor, and knowing my wife’s disease well, I would be concerned about being off med that long. Hope this helps. My best to you.

Regards,
Lou

July 20, 2013 at 11:32 am
(363) Bonnie says:

I saw your reply earlier Karen but I wanted to take my first compound pill then report on how that went.

Well, it’s definitely not like Levoxyl.
On the side if caution I had some cereal around 8 am then put the ingredients of the capsule in a quarter cup of cold water, stirred it up good and drank it down. I felt like heaving after, but continued to drink water to clear my esophagus (gagging on it).

I didn’t notice anything at first, and tried to keep busy, then within a half hour I noticed my wrists feeling really tight to the point of feeling numb, the palms of my hands really dry and tight. My legs and feet were still ok.
Got in the shower and kept rubbing my arms and wrists then the numbness left. During my shower I had really bad heartburn that lasted a few minutes (I suspect from the medicine going through the esophagus). After my shower, my legs got really tight (could really feel it in my knees). My hair has been shedding much more over the past 2 weeks which is noted and I’ve had some strange things occurring with my breasts (sore nipples that the dr checked). So, from 8 to 10 I felt weird like the med. was too strong (and it could be). I had this big surge, but now feel fine. I don’t have a low grade fever like I did with the other medicines so I’m not aching and tired (yet). I’ll report on my swallowing and eating later on. See what this day brings and how I sleep tonight.

I’m not looking forward to waking up every day to this medication surge after taking it. Try not to be scared of these things but I never had these problems with Levoxyl.
I may need an adjustment with this medication, will know better by Monday. Sustained release may have been better but then I’d have to swallow the capsule and I didn’t want to do that for now.

Thanks for mentioning the fillers available at this place. I’m going to try and stick with this right now.

July 20, 2013 at 12:32 pm
(364) Ed says:

Karen,Cabro, and Lucien,
Thank you for your comments. Yes it’s been a rough time going undiagnosed. My memory is really terrible, I think I mentioned I was on Levoxyl for about 30 days until they pulled the plug on that product. Then the Endo not only switched me to Synthroid immediately but bumped me from the 50 mcg Levoxyl to 75 mcg Synthroid. And then I felt like an airplane going faster than it was designed to go and the wings about to break off, so I stopped it all and don’t have a thing in me except half a thyroid that barely is working. The other half was removed around 1998 and Doc said I was good to go. Well I guess I wasn’t really in tune with my body and didn’t know any different until it got bad enough for me to question that something just doesn’t seem right here. So I think I’ll hold out until I can find Erfa some how. I was also thinking of asking for a script for hydrocortisone as a back up in the event I get the heart palps and associated symptoms with the thyroid meds if I do I deed have adrenal fatigue/exhaustion. I saw a web page where this will let the adrenals take a break and hopefully recover on their own and produce cortisol as they should. I want to get the saliva test for cortisol to see if it is being produced at the correct levels at the correct times of the day. Because at 3 or 4 AM I a ready for the day, at 3 PM I’m finished, no energy to spare. I’ll let you know how it works out for me. Hope this all makes sense. I’m really surprised my employer puts up with me at times. Must be very compassionate is all I can say. Thanks

July 20, 2013 at 1:19 pm
(365) Karen G says:

Bonnie: I wanted you to know options. Good to stick with what the doctor gave you – it takes time to adjust. I have always taken the med on an empty stomach at least an hour before or after eating. When I started on one med, I took half dose for 3 days then upped it slowly. But this was a pill. I do not know if you can do this with compounded. Your Pharmacist would certainly know the answer.

July 20, 2013 at 10:00 pm
(366) Ed says:

Lucien , I found a local doc that at least sounds good enough to give a try. I’ll ask about the chances of getting Erfa which I would prefer. If that’s a no go I’ll settle for Armour Thyroid and hope for the best. You are right I’m in bad shape. As some one else one here or another blog said so eloquently. ” if they don’t get a resolution soon it may be just in time to sign the divorce papers and look for another job. lol. Not quite there Yet as far as I can tell. Thank you. Updates to follow.

July 20, 2013 at 10:59 pm
(367) Tonya says:

Hi Karen thanks for the info. I am now on Tirosint been taking it for the last 4 days. So far Iam feeling much better, the side effects from the synthroid are subsiding and no new side effects have surfaced. I did locate a compounding pharmacy in my area just in case i need one. If the Tirosint continues to work for me I will stick with it, I feel like my oldself. Hopefuly everyone will find something that works for them.

July 21, 2013 at 9:59 am
(368) Karen G says:

Tonya: Good news. So glad to hear that.

July 21, 2013 at 10:22 am
(369) Lucien Berardo says:

Ed: We are ordering Erfa Armour from Northwest Pharmacy for my wife. The pharmacist said the script can read “Armour Thyroid”, no need to specify Erfa manufacturer. Toll free number 1- 866-539-5330. Primary recommended starting with 60 grain per day, so we ordered a bottle of 100 at $33.99 plus 9.99 shipping. After a month she is to increase daily dose 15 grains more for a month, then another 15 grains more a month to get up to required dose of 90 grain. They only stock the med in 60 and 30 grain tabs. At 90 grain full dose we can get more than two months out of 100 tabs of 60 grain.
Not sure if any conversion from US dollar to Canadian issue, will advise on that later after we order.

Regards, Lou

July 21, 2013 at 12:27 pm
(370) Bonnie says:

For Karen Williams; I looked at post 183 to see what your Facebook name was. Please verify as there are a few Karen Williams in San Diego, Ca. I can send you a message and communicate a little more. Thanks,

July 21, 2013 at 2:56 pm
(371) Karen G says:

Bonnie: I deactivated my Facebook account a little more than 2 weeks ago. I will be checking this Forum again late this afternoon, so look forward to your report. I would feel confident using this Forum.

July 21, 2013 at 5:04 pm
(372) Bonnie says:

My report with the compound medicine isn’t a good one.

The compound, although hypoallergenic, Reminds me of Tirosint with my reactions. Yesterday I barely ate much (which seems to be the way these medications hit me when they coat my tongue, making things dry). Hard to explain these symptoms to anyone who’s never had dryness in their mouth. About 11pm I had cereal after the med. wore down then I felt more hungry. Oh, and the bad heartburn I had on and off all day..horrendous.

Tirosint really made my eyes burn with extremely blurry vision, and red, puffy eyes and this compound is doing the same thing. I could barely see-through the blurryness or keep moisture in my eyes they are so dry. So much skin redness and itching, with tight muscles. I feel really lethargic on this medicine well.

I’ll call the pharmacist tomorrow to discuss. The pills were expensive, and I think they should know my reactions.

It seems that ALL the thyroid medicines that I have tried dry me out so badly, tighten my muscles up where it’s difficult to walk, I’m so stiff. My wrists and legs get like this after I take any of these medications. It will last for hours until the medicine wears down so I feel more normal, muscle wise. I get neck pain and soreness and spine pain if I sit in any position for too long (like over an hour).

I realize muscle soreness and dryness is due to hypothroidism symptoms, but I have to say that on the same dose of LEVOXYL I never had any if these symptoms. Levoxyl where are you us right!!!

July 22, 2013 at 12:08 am
(373) Karen G says:

Bonnie: Muscle soreness and dryness are definitely a sign of hypothyroidism. It takes more time for the T4 to build back up into your body to eliminate the hypo symptoms. Can you give the new med a bit more time? In past 2 months how many days do you think you were off thyroid? I would not tolerate those symptoms too long however.

Micro cry cellulose is an anti flammatory and could be the cause of the blurred, watery vision. An anti inflam would be draining your eyes, sinus and throat. Do you notice a sore congested throat? I had those symptoms on the compounded T4 with micro cry cell which I took for a month. Also on Tirosint – the geletin and glycerin are anti inflammatories. A little bit on the Vit C filler which I am now taking. It would be interesting to know if anyone else on Tirosint or compounded had these symptoms.

The only supplement I know of without any inflammatory is Erfa Armour thyroid from Canada. It has NO micro cry cell. This is designed to be taken sublingually. Armour by Forest in U. S. can also be taken sublingually. I know of no other filler for synthetic T4 compounded that is NOT an anti inflammatory.

This could be a dupe message. I sent the same message earlier but I think it did not register.

July 22, 2013 at 12:49 am
(374) cabro says:

Bonnie and all,

Re: post (366), There is also a Swiss NDT, Novothyral, also by Merck. Could they be the same?

Thank you for writing your government officials. I need to do more. I have clicked through the link at Women’s International Pharmacy regarding the bill before Congress that will affect bioidentical compounded meds. But I need to get my representatives informed on the Levoxyl situation. When you feel lousy, it can be a challenge. I hope you feel better soon and find a way to get T4 in your body in a form that doesn’t take such a big toll on you. I’m pretty sure I am now dealing with long-term fallout from the Tirosint. My theory is that like my mouth, my sinuses, my nasopharynx and my throat in the hyoid area, the RAI treatment I had for cancer has dried up my esophageal lining, and also the lining of the stomach and colon. The Tirosint hit it and resulted in a “burning” effect for the last 5 weeks of my 2 months on it. Now it has failed to recover because of the Synthroid misery and ill health while on it. Already having Barrett’s Esophagus, I was a sitting duck. If only I had known. One colonoscopy coming up.

July 22, 2013 at 9:11 am
(375) Karen G says:

Post 375 correction. The only thing I know without any ANTI inflammatory is Erfa Armour thyroid.

July 22, 2013 at 12:17 pm
(376) Bonnie says:

Here is a phone number from another forum (“everything changes”) for Ian Read, chairman of the board and chief executive officer of Pfizer.
Corporate office: 212-733-2323.

I called this morning and left a message that I’d like a phone call back. Said I would call back tomorrow if I don’t hear back today. I encourage everyone to call. :)

I’ll update later about myself. So tired of not feeling very well (gets old fast) so ready to move on.

Thanks for all the information on inflammatory free med from Canada (erfa),

July 22, 2013 at 6:32 pm
(377) Karen G says:

Cabro:

Thanks for your info. Not familiar with Novothyral. I found it on the Internet – it looks like it is a combination of T3 and T4. This site was in German which I understand fairly well. I did not see any inactive ingredients. My husband’s two daughters and former wife are all nurses in Germany and born in Germany. (Hubby born in Metz France) . I have e mailed them for more info. I got the Euthrox package insert(which was in German) from the mother, thus the info on post 361. Euthrox is straight T4. I mentioned the inactive ingredients on that post. None of the Canadian pharmacies I have checked so far carry either Euthrox or Novothyral.

I am wondering if the Levoxyl formula cannot be duplicated due to some pharmaceutical law similar to copywrite law. .

There was an e mail on the package insert for Euthrox, I would be happy to e mail the German pharmacy and get more info. It probably would be very expensive.

I hope your colonoscopy goes well and there is no damage from the Tirosint. Sounds like you as well have gone through quite a lot. I hope you keep sharing. God Bless.

July 22, 2013 at 8:01 pm
(378) Bonnie says:

I was looking up Novothral and Euthrox as well and one if them is made with a gel of some form.

It’s all so baffing, and scary to think if changing thyroid meds till we’ve tried them all (to find out Levoxyl is all we can take). I wish they did have a duplicate Levoxyl pill, would end our misery.

Cabro: Take good care and keep us updated.

Karen: I have been off thyroid meds here and there, but mostly in the beginning when I was advised to go off meds for a week to clear my system. This was after I couldn’t tolerate mylan (right after the recall situation) and not being able to tolerate Tirosint right after that. It’s a confusing mess to explain. Moving and changing endocrinologists with different theories has been tough. I was never told to wait before changing meds from either one of them. I’ve been on some kind of medication daily for the most part unless they would say take every other day (to try and adjust). If I can’t tolerate something within 10 days I know I’m not going to adjust. I keep suffering till I can’t suffer anymore. I was told I Have to take something with the least side effects snd so far they all give me bad side effects. All that’s left is Armour or a natural med to try. I’m so exhausted with this whole thing! When you don’t have much of a choice, and you can’t tolerate the medicines it’s rough. I wake up every day to the same scenario like many on the forums who mention similar things. I would not be IN this situation if it weren’t for the recall. I miss my regular medicine so badly…,

July 23, 2013 at 1:24 am
(379) cabro says:

Well, this is just bizarre.

I have tried both Tirosint and Synthroid and documented intolerable negative side effects with both. A month or so ago, in a moment of frustration, I called Pfizer, who now owns Levoxyl. I just wanted to add my 2 cents, to let them know how much I needed Levoxyl and to plead with them to get it back on the market before 2014. I don’t recall giving my phone number to the woman who answered the phone, but maybe I did. She suggested I try another drug. Well, duh. I told her I had bad side effects from Synthroid and she said to report them to my doctor (like I hadn’t done that already!). I hung up.

So, today I get a phone call from Abbott Laboratories, the manufacturer of Synthroid, from a “Medical Information Safety Specialist,” who wants to know about my experience with their product. What??? So pharmaceutical houses are now sharing information, including negative information, about reports on their products?? Has hell frozen over?? I even have a case number, for pity’s sake.

In the meantime, I am adding Synthroid and Tirosint to my “Do Not Give” list of drugs because of the bad side effects. I don’t think I will be reporting that to anyone at either company.

I know we don’t have any privacy anymore, but this is just bizarre and makes me feel very uneasy. I guess I’d better get used to it – ?

July 23, 2013 at 1:31 am
(380) cabro says:

I had difficulties with my eyes, including dry eyes, tearing and blurry vision, particularly on Tirosint, probably more than on Synthroid, but it could have been both. Brain fog…… But I also have scarring and blockage in the eye ducts from radioactive iodine, so I can’t be sure it was all Tirosint. The secondary blurring (not from having an eye full of water) leads me to suspect the Tirosint.

July 23, 2013 at 6:03 am
(381) Ed says:

Lucien, Thank you for your continuing posts regarding Erfa. I ve looked into that compared to Armour and want to go for that one.
One good bit of news for me. I found a local small but busy pharmacy, they had 60 Levoxyl tablets in stock, but not any longer because I have them now. So this gives me some time to recover back to somewhat a normal state of mind, see my Doc and get the ball rolling on trying to acquire Erfa.
I guess the pharmacist could see I was a wreck, he said tabs expired soon , i told him I didn’t care, he said I didn’t think so. Not taking any meds is NOT good , but how good is taking meds that make you feel worse or sicker than the thyroid condition, (until too much time passes and you become a total mess)? I guess everyone on here already knew not to stop the meds, but I was so sick, not to mention very angry about the whole ordeal I just threw the junk meds in the drawer, closed it and said forget it. Wrong thing to do, now I have quite a hole to dig out of to get back to a point where I can make a simple decision or a choice without going into a panic/stress attack. So I hope I’m back on the mend. Thanks to everyone for sharing your experiences, they all have helped so much. And Thank you again Lucien , I really appreciate and value your posts on here. Lots of luck to you and your wife. Ed

July 23, 2013 at 8:17 am
(382) Karen G says:

Ed: Good news!

Cabro: I too called Pfizer to report my symptoms on each med I have tried. Later had a call from Mylan, and a letter from Allergan. How did Allergan get involved? I also reported the
trouble I had on the compounded with Avicel. The anti inflammatory action was causing vestibular problems on my Gentamicin damaged ears. I had taken 26 x 5ml Gentamicin EYE drops in ears that had PE tubes over an 18 month period several years ago.
The drops were by Allergan.

Now on Vit C filler the anti inflammatory issue is much less but still there. My neurologist recommended I get off antiinflammatory fillers. Also my thyroid testing of last week showed a TSH of 14.77. This proves that I was not. getting enough T4 on compounded T4/Vit C. I thought the tiredness was caused by an ear infection.

I am glad some manufactures are showing some interest and responsibility in reactions to their drugs. But it is bizarre for sure.

Took some Armour by Forest last night and woke up with a miserable sore throat. Armour has microcrystalline cellulose in it greater than the .18mg of Levoxyl, but it must be a high amt. I am ordering Erfa today from North West Pharmacy. I have also had two small thyroid nodules in my gland. Will have F/U ultra sound on that.. Yesterday too I discussed all of this with my primary . She recommended….Synthroid…to tide me over until I get the Erfa Armour. I did not tolerate it well last May, but I am going to take it. It should only be about 8 days to get the Erfa – possibly longer due to customs.

All I can say now is that I absolutely refuse to be defeated by all of this.
.And thank you so much Forum for all your informative posts.

July 23, 2013 at 10:07 am
(383) Lucien Berardo says:

Ed: I am checking this Forum every day for your reports. Following others as well. This is an incredible group of people. You are not alone.

July 23, 2013 at 12:08 pm
(384) Susan R says:

I am so happy to find this forum! I have been on Levoxyl for over 10 years and have done fantastic with it! My Dr. changed me to Synthroid due to the recall of Levoxyl and it made me so sick, I had so much joint pain, fatigue, heart palpitations and just felt sick overall. After two weeks of that I stopped taking it. I had a very old bottle of a lower dose of Levoxyl and just take two a day to get my required dosage. I am rapidly running out. I called the Phfizer company today and was told that the recall is due to the strong odor coming from the bottle and there was a problem with the freshener insert. It is not a problem with the drug itself. I suggested putting them in a different bottle with no freshener insert and decrease the shelf life. I can’t imagine why it would take so long to revise packaging! I also informed them that we have a lot of stock with the Phizer company and I may be rethinking that if this is how they treat their customers! I was asked for my name, address and phone number and was told I may receive a call back. After reading this forum I am sure that phone call will be from the manufacture of Synthroid. I spoke with my pharmacy today and they suggested Mylan, hopefully it will do the job!

July 23, 2013 at 3:46 pm
(385) Bonnie says:

I shouldn’t say this but the compound is making me too sick, so my endocrinologist is putting me on Armour. New experience with this and I’m terrified. My nerves are such a mess inside. If I get one more migraine headache, and all the other terrifying symptoms with this.,, I don’t know what!! So tired of this misery. :(

All the controversy over all these medicines. All but Levoxyl is substandard to me. God, I want my life back!

I called Walmart to see if Levoxyl came in yet and the girl said they never stocked it there because it was expensive ..REALLY???? I never thought it was expensive. That was the icing on the cake. I payed 25.00 for 50 pills and thought it was inexpensive. That was a 3 month supply for me at half a pill a day.

Well since I never took dissicated thyroid before, I hope I don’t croak. I so did not want to go this route. Feel like guinni pigs trying out everything.

Thanks for your inspirational poem Karen. :)

God be with everyone on this forum.

July 23, 2013 at 5:28 pm
(386) Glenna says:

Hi everyone out there in thyro land!!!
Haven’t posted any comments in about a week so wanted to update you on my success with the compounded meds.

This is day 7 with the compounded t4, had some psychological issues for two days, added my compounded t3 on the third day, felt much better. Doc said as I was probably low in t3, hadn’t taken anything in 12 days, that was the reason for the achiness and mental issues.

While I wont say I am 100%, I would rate 80-85%, but progressing every day. Achiness is gone, brain fog is much much better, nervousness is gone, moodiness gone, feel a wee bit tired, almost a light stoned feeling which I guess some people would appreciate, but I feel really mellow! ; )

Folks, if you are still feeling achy, brain foggy and not getting much relief, add the T3, it is literally a life saver for me. I am SOOOOOOO much better with the two meds.

BONNIE – I would say you were experiencing issues with your compounding meds as AVICEL is a fast release filler. My pharmacy uses Mythrocell, actually that is probably not the name, KAREN G. knows the actual name for it, but the filler is slow release. I also use a compounded T3 from the same group with the same filler. I can not take
cytomel as it made me crazy as it is fast release.

Remember, not every compounding pharmacy is good with compounding thyroid meds. I highly recommend Piney Point pharmacy is Houston, TX – if you would like to contact them the number is 713-782-6212 ask for George the pharmacist. He has a thick east Texas accent, my doctor described him as the “ranch hand”, but she gave him high praise for his compounding knowledge and kindness. Piney Point was recommended to me by Dr. Ridha Arem a thyroid guru in Houston.
I do know the T3 runs about $50 a month, and the T4 is cheaper. They will even compound the two together, which I might do in the future after I get a better idea on my levels.

Never, never, never, never give up! You will find what you need.

July 23, 2013 at 7:30 pm
(387) cabro says:

@Bonnie: I am so sorry you are suffering so much from all of this mess. I think the girl at Walmart who told you that was misinformed. Synthroid is the most expensive T4 tablet out there. Of course, Tirosint is much more expensive than Synthroid. If you can get Erfa or even NatureThroid, you will avoid things like corn. I know someone who was having numerous intolerances before the Levoxyl debacle. She is now doing well on NatureThroid. I agree that all but Levoxyl are substandard.

@Karen: How bizarre that Allergan got involved. :-/ Thank you so much for Helen Steiner Rice’s lovely prayer.

July 23, 2013 at 8:18 pm
(388) Karen G says:

Glenna: I believe it is Myocell. George was very protectful of your privacy when I called after you gave me the phone number to get info on it(he gets an A++++++) , and we discussed only what two fillers his pharmacy uses for compounded T4. One was the Myocell, the other microcrystalline cellulose. So glad to hear your positive report. I so wanted to make my compounded work, but was advised to stay away from the anti inflams. It is so individual, works for some, might not work for the next person. Forward Hooooooooooo….On to the NEXT!

July 23, 2013 at 8:43 pm
(389) Karen G says:

I found a 25% discount compon on Synthroid.com Web Site. . With discount it is $33.00. On insurance $6.65. I had used Sandoz to cover a gap in early Jul, so it was too soon to get insurance coverage on Synthroid,

My primary OK’d Synthroid tab(or Forest Armour ) under the tongue. Less side affects when it bypasses the liver and goes straight to the blood. Forest Armour does have micro crystalline cell in it. Erfa does not. It will take me at least 2 weeks to get the TSH normal. My vit D was at 13 compared to 30 on last test . I will use Synthroid until I get the Erfa. It is the 1st day in 2 months I did not have the excruciating drain pain from inflams. I prefer not to be hypothyroid – awful.

My primary gave me a script for D3 in 50,000 IU dose once a week.Not comfortable on that, I understand we should not supplement more than 2000 IU per day. Vit D levels affect our thyroid.

July 23, 2013 at 11:31 pm
(390) Carol says:

Karen G: Re: the Vitamin D: Was your script for D2 or D3? My endo gave me an Rx script for 50,000 u of Vitamin D2 (not 3) last year and insisted “nothing else” (i.e. over the counter) was going to work. Again, not covered by insurance.

Did my research and decided D2 megadose not for me. I chose instead to get Vitamin D3 capsules at Vitamin Shoppe ($7.99 for 120) and my lab work came back fine – went from less than 10 initially to 29 and now 59. The endo said he “learned something” from my experience. I know you do a lot of research and thought I’d share what worked well for me.

Thank you to everyone for being so kind and sharing your stories.

July 24, 2013 at 1:54 am
(391) Karen G says:

Carol: My script was for D3 . I knew little about Vit D(it was not mentioned in school) until I had a low reading . My grandmother taught me more about med. High blood pressure, take potassium. I learned much about Vit D/inportance to heart health in Sherry Rogers, M. D. book Series(Is Your Cardiologist Killing You?) and I hit the Internet Web Sites, Mayo and WebMD. I got level up to 30 in May by diet and sun, and in the interum it plummeted.due to below normal thyroid.

The dose of 50,000 would be a tremendous hit to my vestibular. I occassionally put the oil from 400 IU D capsule on my skin. I will eat salmon 5 days a week at 800IU vit D each and make sure I drink 4 x8oz skimmed milk and get 10 minutes per day of safe sun. Probably will grow a tail fin in the process! I will get it back up quickly. Your 59 is great. Sounds like you do a lot of research too . Good you did that. Your endo was not right as you learned. Thanks for sharing,. please share any more info you have on Vit D. It is important to thyroid health and I think others on the Forum would appreciate that.

July 24, 2013 at 6:43 am
(392) Karen G says:

Vit D is a potent anti inflammatory, and would affect me the same way as the microcrystalline cellulose and other inflammatories in the compounded T4 fillers.. My neuro/ENT was aware of that.

July 24, 2013 at 10:10 am
(393) Carol says:

Thank you, Karen, for the book information. I am going to check my library.

I was told in June (by the endo) that the 59 Vit D3 level was too high and that it would be a problem if it got higher. Same endo who told me when I called him last week about the Tirosint side-effects that there is “no way it is the Tirosint”. Then I told him about the double $ increase in price and asked for the Sandoz. I stopped the Tirosint Saturday and my symptoms subsided. Started the Sandoz 1/2 dose (25 mcg) yesterday and took the full dose (50 mcg) this am.

I started taking magnesium a few months ago. Post Superstorm Sandy (hit very hard) and it’s still stressful. Do you know anything about magnesium? I’m going to look into the potassium. Thank you.

July 24, 2013 at 11:43 am
(394) Karen G says:

Carol:
I know Vit D is harmful after a certain level. However, we can never overdose on VitD from the sun. Our body has a mechanism to stop the synthesis before levels go too high. Ten minutes a day on legs and forearms – I never expose my face – might get wrinkles. In NY you would not get any Vit D in the winter from sun.

“Is Your Cardiologist Killing You “is on amazon.com for about $20.00.
I wanted THIS book on my shelf. I bought every other book she wrote. An excellent book on how to lower chol is “Cholesterol Down” by Dr. Brill. I mention these because high TSH increases chol.
I feel balanced minerals are also best for thyroid. Even if you have no thyroid function, which is my case with Hashimotos.

The body needs 4500 mg potassium and more than the 400 mg magnesium the FDA recommends per day. This Sherry Rogers book will cover all the heart health issues and the myths. Magnesium and Potasium are critical for heart health. I drink Low Sodium V-8 with 900 mg potassium per 8 oz., 2-3 glasses a day AND 4 glass sk mil with 400 mg potassium each.. It’s HARD to get 4500 mg. a day!

July 24, 2013 at 12:08 pm
(395) Karen G says:

Carol:

I had 5 by pass/ one mitral valve repair open heart surg in 2004 at Sharp Mem Hospital in SAN. In ICU , I was told I would not make it . I told the doctors to “Go to ****”. I later apologized. They said “No problem lady, we upped your odds after you said that.”

The right coronary descending by pass and one other did not work after surgery- blood was not moving into the arteries. My death was pending. Two days in ICU, the blood started moving through them. My collies were calling me “Karen Come Home”. (Remember Lassie Come Home?). We had just put in new carpet, and when I called my husband from the hospital he always said he was vacuuming. I HAD to get home. Otherwise the carpet would be consumed by the vacuum. So Thank God for my husband Mr. Clean and my collies and the excellent surgeon, cardiologist and staff at Sharp… and, above all, God.

After retiring, I dedicated my time to personally researching heart health and thyroid. And any other disease that befell my friends or family. It was also a good way to keep my mind working and help others as well. So like the rest of you on this Forum, after being diagnosed with Hashimotos, I hit the library and computer. Unfortunately we do not get the whole story from our doctors.

July 24, 2013 at 1:52 pm
(396) Karen G says:

Good to share notes on magnesium. I need to refresh my memory as well on Vit D. Carol, hope your home was not damaged or destroyed by Sandy.

July 24, 2013 at 2:09 pm
(397) Karen G says:

I see 80 Vit D level and above is considered toxic per Mayo Clinic.
They say 25 is bottom level for normal. At 10-13 levels we could have problems with parathyroid and adsorbtion of calcium in our body. This deserves more discussion among thyroid patients.

July 24, 2013 at 3:15 pm
(398) Carol says:

Thanks, Karen. I’m going to get the book you recommended.

The storm did horrific damage to the area where I live. Very sad. I’m okay now. Endo was extremely supportive. And I found this forum, so I’m feeling more support. Thank you to everyone.

July 26, 2013 at 3:06 pm
(399) cabro says:

Carol,

If you paid for your Tirosint (I had samples), please report your symptoms to both your pharmacist and to the manufacturer. They have to take your report. It’s required by the FDA. I’m concerned about you. I tolerated the burning for four long weeks and at that point I was ready to take nothing rather than continue with the daily smoldering volcano in my gut. And I have NO thyroid, so I would have been in pretty bad shape within a few weeks. But I didn’t care. It was that bad. DON’T tough it out if you are sick. You are potentially damaging your gut. I don’t know if I will ever recover from the damage from both RAI and Tirsoint. I feel like my whole gut is stripped. Get a blood test anywhere you can and get off Tirosint. Believe me when I say, it’s not going to go away or get better.

Best of luck to you.

July 26, 2013 at 3:36 pm
(400) cabro says:

I returned Abbott’s phone call. They are required by FDA R&R’s to follow-up on any report with a negative comment/feedback/report about side effects with their drug. I KNEW I shouldn’t have called Pfizer. Now I’m being tracked in both Pfizer’s and Abbott’s data bases. When I made the phone call a couple of months ago to Pfizer, I was distraught and kind of angry, thanks to the searing hot flashes I was experiencing, and very frustrated because the woman at Pfizer was quite clueless.

The woman asked a few things that I responded to with “I’d rather not say” – height, weight, (I said average) my medications (I simply said “stable for six years”), and more. They don’t have any right to dig further into my life. However, I did tell her about the widespread muscle and joint pain, the serious hair loss and the malaise/toxic feeling I was having on Synthroid, as well as the reported hot flashes. I was willing to tell her the dose (100) and why I am taking it (TT and subsequent hypothyroidism). I mentioned my age when I said I didn’t have hot flashes until the ripe old age of 67. She was mainly interested in the hot flashes. Unfortunately, they have not abated completely, but they are less frequent and generally less searing.

Before I hung up, I told her I was certain it was the fillers, and she didn’t challenge me. She said she would put it in the report, but I doubt it. And I told her that because of the Levoxyl recall, there are literally thousands of people who are stuck on their product and suffering a LOT. And I reiterated that it was the fillers. – maybe the dyes, but my bet is on the fillers, which I said were “bad news.” She thanked me and I hung up, after asking choosing not to be contacted again.

end Part 1

July 26, 2013 at 3:37 pm
(401) cabro says:

Part 2

Watch what you say if you talk to these people. They are taking it all down and they bow and scrape to the FDA. I was tempted to tell her that I knew Synthroid had never been through full FDA approval, that they were just grandfathered in. But I thought better of it. Same for their excessive pricing on a 50-year old drug.

As you can tell, I have a lot of leveling out and healing still to do, But I know I am not alone and it could be much worse for me. I hope you are all having a better day and are looking forward to a good weekend.

July 26, 2013 at 6:01 pm
(402) Karen G says:

Cabro: What are you are taking now after the Tirosint ? I understand you had a bad experience and possible damage from the Tirosint – a lot of people have reported similar symptoms.

I got a third F/U letter yesterday from Allergan requesting information on my experience with their Gentamicin eye drops prescribed to ears which happened more than 20 years ago. All because I reported to Levoxyl people on my trials on replacements. Good advice to be careful what you say to them.

There was a warning in the LA times today to be careful what info you give out to these coupon/drug discount companies. For example: I got a discount coupon off the Synthroid.com Web Site. It advertises what looks like is a 74% discount on Synthroid. In fine print it reads “up to 74% discount”. I got only $10 off the prescription which I cannot complain about BUT I did give them my name and address to get the discount card to carry with me! They sell that info to the world. I won’t do that again.

I e mailed the reporter at the LA times who wrote that article to check into the Levoxyl off the market issue. Who knows, maybe something will come of that request.

I just pray that you will find something that works for you.

July 26, 2013 at 6:34 pm
(403) glenna says:

Hey everyone on COMPOUNDED MEDS!!!

The senate, what a lovely bunch of horse thieves, is gearing up to finally vote on ending our right to compounded meds, primarily thyroid and other hormone meds. Apparently, compounding pharmacies have cut into Big Pharmas billions of dollars in profits and the FDA just can’t tolerate that!

PLEASE CONTACT YOUR SENATORS!!!
http://view.mail-pccarx.com/?j=fe671576746105757516&m=fe62157071620c7d7112&ls=fdcf15717565047b7411767d67&l=fe9116787064057a72&s=fdf715707d6102797016717d&jb=ffcf14&ju=fe2e15777061007e761772&r=0

July 27, 2013 at 12:25 am
(404) cabro says:

I took Synthroid after Tirosint. Actually, I dug into the bottom drawer of my bedside table and, being a pack rat and having a doctor who has tried mightily to find a good dose for me, I found at least 6 months worth of Levoxyl! That is, if I cut pills and mix and match. I felt so blessed and such a relief when I found them! My concern is that not all the tablets are as fresh as I would want. Most are within the past 12 months. But I do have some that are as recent as April 2013. If only I had known in early April!!!!”

My endo plans to have me re-stabilize on the Levoxyl, which is a fairly tall order after 4 months of really bad drugs. I think it will take several months. Then we are going to start “blending in” some Sandoz as a trial. If that doesn’t go well, we will use the rest of the Levoxyl with half doses, for a base of T4, with NatureThroid or Armour on top. That doesn’t give me enough T3, but it’s better than a bad synthetic T4 for the remaining months until Levoxyl returns. I take Cytomel, too, and it gives me 6-8 decent hours a day about 4 days a week. We can’t use Cytomel when on NDT.

If you’re tired of it, I would contact Allergan and ask them not to contact you again. Abbott gave me that option and I took it. I’m interested in your Gentamicin experience. I’m not clear on what “Gentamicin eye drops prescribed to ears” means. Did a pharmacy screw up or a doctor? I have Meniere’s and Gentamicin is known to be ototoxic. However, once Meniere’s burned out my hearing in one ear, we used Gentamicin to “kill off” the vestibular nerve and stop the vertigo attacks. Did you suffer hearing loss?

Interesting about the coupons. I have an extra email addy for those sorts of things.

Also, thank you for writing the LA Times reporter.

Thank you so much for your kind words and prayers. You are in my prayers, too. I appreciate all you are doing.

July 27, 2013 at 9:24 am
(405) Karen G says:

Cabro: A doctor messed up. I was prescribed 26 x 5ml Gentamicin EYE drops to be used in my ears when I had PE tubes in place. I was to use the drops prior to and after showering, hair washing and swimming. This happened over an 18 month period in 1990 and 1991. I continuously reported my symptoms to the ENT and he said the Gent was ototoxic if used by IV. Well he was wrong. How much more IV – like can you get by applying the drops that went through the tube directly to the inner ear. My vestibular nerves were severely damaged. Yes I have hearing loss, more so in the right ear, I depend upon the left which is good. I have Meniere’s like symptoms, but no Meniere’s. It took me 8 years to get a diagnosis on damage. I went to Rochester Mayo Clinic twice, and they diagnosed a vestibular neuropathy. It was too late for any medical malpractice lawsuit.

When I take an anti inflammatory, my inner ears go crazy. I could not find ONE compounded med that did not have an anti inflam in it. The T4 delivery was excellent however. Now I am on Synthroid and it is not that bad. The repercussions from below normal thyroid are more severe than a negative symptom of Synthroid. I don’t like the Providone, I have what I call a “Dark mind” on Synthroid, but when taken under the tongue, not so bad. I plan to continue on Synthroid until my Erfa thyroid comes from Canada and then will try that. If that does not work, then I have no other choice but to stay on Synthroid until Levoxyl comes back. If it comes back the same…this has taken 4 months out of my life, not counting last year when the Levoxyl was not consistent.

I believe we now have spell check on Forum? Wow! Or is it in my new computer?

July 27, 2013 at 10:20 am
(406) Karen G says:

HelpRx is the drug discount company I used for Synthroid. You can get the coupon off a drug web site, but do NOT give your name and address to get a discount card sent to you. It was published in the LA Times that this company will sell your info to others even tho they advertise they won’t do that. They advertise a 74% discount, but really mean “up to 74%” and I got only a $10.00 off Synthroid prescription. Just please be alert to these false advertisements for drugs.

July 28, 2013 at 1:23 am
(407) cabro says:

Karen,

What a nightmare of a story about the Gentamicin. I’m sooo sorry the doctor was so negligent. In my experience, Meniere’s symptoms are life-altering. How strange that you can’t handle any sort of anti-inflammatory. Does that inlude Vitamin C? I understand completely why Synthroid side effects are preferable to Meniere’s-like symptoms. :( I wish I had known that taking Synthroid sub-lingually could mitigate “dark mind” symptoms. But Synthroid is now on my list of “Do Not Give” drugs. I was so miserable with side effects and am still hoping the hot flashes will continue to abate. Summer is an especially bad time to deal with them.

Wishing you better days. Thanks again for all you do here.

July 28, 2013 at 9:33 am
(408) Karen G says:

Cabro:
I cannot tolerate the pharmaceutical grade of Vit C powder that was one of my fillers in compound. I have no problem with Vit C powder from Swanson and I take a lot of it.. Don’t know why, tho they are quite different from each other in texture. It is the action of the anti inflammatory reducing swelling that triggers the inner ear issue.

I have taken Synthroid successfully under the tongue, but I read a Web Site by Mary Shomon that does not recommend it. According to the expert opinion , the molecules in Synthroid are much too big to absorb through the membranes under tongue. I think it best to follow that advice. Perhaps I was only getting some of the med due to swallowing some while under the tongue. I vote in favor -without question – of any of her info she provides .

July 28, 2013 at 11:05 am
(409) Carol says:

Cabro (#404) : Yes, I did stop taking the Tirosint about a week ago. I started the Sandoz this week.

Not sure when is the best time to take it. For years, I’v been taking the Levoxyl at 5:30 am and then eating about 2 hours later. Now I read that some do better taking med at bedtime. Do you or Karen or anyone else have any recommendations? Thank you : )

July 28, 2013 at 3:29 pm
(410) Karen G says:

Cabro:

This is where I got my info on sublingual Synthroid:

thyroid.about.com , “Should I take my thyroid sublingually” by Mary Shomon.

Carol:

I had your question as well. I found good info again on thyroid.about.com by Mary Shomon, “When should I take my thyroid medicine?”

Hope this helps. Have a great weekend both of you. Healing is on the way! Carol hope the Sandoz works well. Celebrate “I Refuse to Be Defeated Day!” Every day…

BONNIE: How are you doing on Armour? Ed, thinking of you as well.

July 28, 2013 at 5:41 pm
(411) Ellen N. says:

I am a s/p thyroidectomy patient who has been taking Levoxyl successfully for 9 and 1/2 years. I have been following this website for about a month as my final supply of the drug has been dwindling. I started Mylan per my endocrinologist’s suggestion this past Thursday. She is recommending this drug, due to its likeness to Levoxyl. I started experiencing muscle aches pretty much from the start and today I am dizzy, foggy and am having trouble with blurred vision. I have found an independent pharmacy that will order the Sandoz product for me. I plan to call tommorow and trial this option. I appreciate all of you who have shared valuable information, and hope that this option is suitable for me. Thank you and I will post progress.

July 28, 2013 at 11:10 pm
(412) Ed says:

Hello everyone,
Wow this forum has been quite active lately. I miss a few days and lots to catch up on.

Karen, I’m coming back to life pretty quickly after just taking about 7 Levoxyl tablets, not feeling great but much better compared hitting rock bottom. Thanks for asking. Karen when I was trying Synthroid I tried it under the tongue in the AM for just a few days and I really believe it helped me crash even faster, I may be wrong, but I really went from bad to worse as I did that.

Cairo, I saw your comment on 404 to Carol and you are absolutely correct, I thought I could push a bit longer with the Synthroid and ended up much worse if I had stopped it days sooner, I doesn’t get better if your feeling bad from the junk meds. Then on the other hand done be hard headed and take nothing

July 28, 2013 at 11:55 pm
(413) Ed says:

Hmmm, space bar on iPad did a submit before I got to mention your post on 385 Lucien. I’m going round and round about who I would have better luck with getting script for Erfa, Endo who knows I did very poorly on the Synthroid and told me to wait 2 months until my scheduled appt in early August to see her and she refused to write the Armour at my request at that time to keep me going. I’m thinking I should fire her, get my records in my possession until I find a Doctor who will treat my symptoms,not just the test results, who may well be my GP. I need to talk with GP heart to heart and beg for mercy if I must. But I will know what amount works not only that I’m feeling well, my ears will not be ringing and I will be able to fully close my hands. If I have a say, I would then check the blood levels and try to hold them around those numbers if its fairly close to the range they aim for. I have appt with both, I’ll probably cancel the Endo and go to see the GP. Hope I’m making sense, brain fog hasn’t cleared up very well yet.
Glenna, I heard about the vote on the compounding, in my mind that was like throwing gasoline on the fire. I jumped on the phone right away and made my feelings well known. I was on a down day that day anyway. They probably put the phone handset in the drawer and closed it, came back to me and I was still ranting on and on.
I’ll check back more often to keep up with everyone. We’ll get through this mess together so hang in there, and take care.

July 29, 2013 at 2:32 am
(414) ruby says:

I am almost out of meds I have 4 days left. I started to take half to make it last and since I am already on the lowest dose my doctor is taking me off. I think I would do better without any meds. Who knows I may be already dying from the lack of medication ;( The generics make me sick. The media never cared to follow up on this issue and the FDA is full of crap too. I emailed Pfizer, FDA and the media and no one seems to care. I am sure once the first fatality happens they will be singing a different tune. I came across an article that Pfizer is not going to produce anymore levoxyl. If I can find the article again I will post it on here. God Bless you all many of you are enduring so much from this situation it breaks my heart to hear that you are suffering.

July 29, 2013 at 4:40 am
(415) Karen G says:

Ed: Here is the actual Web Site where I learned that Synthroid as well as any other synthetic levothyroxine med should NOT be taken under the tongue: http://www.thyroid.about.com/g/2011/05/03/sublingual-thyroid-medication-pill.htm. This is by Mary Shomon.

Ellen – welcome! Not surprised about your symptoms on Mylan. Inactive ingredients are a killer. See Cabro’s posts 352. Keep us posted on Sandoz. Good luck!

July 29, 2013 at 1:02 pm
(416) Bonnie says:

I am not doing very well on Armour. Having a lot of side effects from the chemicals in it. Hard to focus when your not feeling well on the medication. Thanks for asking.

I’m counting on Levoxyl coming back so Ruby, from what I was told at Pfizer, it will be back and to start calling in January 2014. Very depressing to think otherwise. I need my 1/2 125 mcg. Levoxyl pill to feel like myself again.

I took one of my leftover pills (that i saved after the recall) on Sunday and now I have 2 half pills left. I wanted to feel like myself again for a day. No aches or pains, but a wellness feeling (how I miss that!) Now I’m back to feeling unwell and depressed on yet another medication that isn’t right for my body. :(
None of us ever thought we would be in this crisis with our thyroid medicine. Levoxyl has got to come back and soon. Keep the faith everyone.

July 29, 2013 at 1:08 pm
(417) Karen G says:

I went on the Internet this morning to get the Levoxyl manufacturer telephone number, I checked the “prescribing info or package insert” and to my surprise these are what I found listed as inactive ingredients:

1. Microcrystallinecellulose
2. Croscarmelose sodium
3. Magnesium stearate
4. Calcium sulfate dihydrate
5. Sodium bicarbonate

When did #4 and 5 come into the picture? OnDrugtalk.com only 1,2,3 are listed, but the date on that site was 2006. Anyone know? I could not get through to the Levoxyl people.

Erfa Armour thyroid is specifically designed to be sublingual and Armour by Forest can be used sublingually. Key in that question on Mary Shomon’s search engine on About.com, Thyroid and you get verification. Ellen N. if you need assistance seeking answers let me help route you to the reliable sites. Mary Shoman has a wealth of information published, and all of my questions have been answered there and on this Forum. I check this site every evening.

July 29, 2013 at 2:38 pm
(418) Anne says:

Recap of my post 343. Used Levoxyl for 5 years after full thyroid removal due to cancer. Never a problem. Tried Mylan and Synthroid, had bad reactions. Have been taking Sandoz for 12 days now. Started feeling better after day 7. Not as good as Levoxyl, but I can live with it until Levoxyl is back. Hope this info helps others.

July 29, 2013 at 2:42 pm
(419) Bonnie says:

They probably use a pinch of each ingredient in Levoxyl.

I knew what was in them (have a paper print out) of the ingredients to keep on hand.

The croscarmellose sodium delivers the drugs to the intestines.
Sodium bicarbonate is used as a gastric and systemic antacid and to alkalizer urine.
Calcium sulfate dihydrate is a sulfate mineral.
The others are commonly found in other pills.

I’m sure the dose a person takes of Levoxyl, along with the dye in it is determined with any reactions with the ingredients. Everyone is uniquely different.

I like the fact there is systemic antacid in it. Less heartburn issues? I have all kinds of thoughts with taking other thyroid medications and how they react compared to the half 125 mcg that I took for a few years now (after working my way up to that dosing with Levoxyl). Right dose and right medicine. Focusing and functioning, feeling well is a beautiful thing.

Let me know how you do on Erfa.

July 29, 2013 at 2:52 pm
(420) Bonnie says:

I’m so glad people are doing well on the Sandoz brand.

I had tried that a few times but it gave me such headaches I thought I was having a stroke. My pulse was high in that pill and I had ulcers, and a film on my tongue. I wished it would have worked for me.

July 29, 2013 at 4:52 pm
(421) Anne says:

Bonnie: Sorry to hear of your bad experience with Sandoz. I haven’t had headaches and my pulse rate is normal. I’m wondering if dosage may have something to do with it. I am petite, weigh 112 lbs. and take 75 mcg.

July 29, 2013 at 6:58 pm
(422) Anne says:

Bonnie….ooops, I forgot to mention that I don’t have any of your other bad reactions either with Sandoz. Hope that you’ll be able to find a med that will work for you real soon.

July 29, 2013 at 7:17 pm
(423) Bonnie says:

Anne: I was 112 lbs but now down to 100. I was to take half of the 125 mcg. and apparently it was very strong on the Sandoz.

All the medicines work differently. If the dose isn’t strong enough, I have vision, swallowing problems and some weakness in my muscles. Maybe 75 mcg. might have been better, I don’t know. On Synthroid I had 50 mcg and had swallowing problems, so they put me on half if a 125 mcg. and I could swallow better but the medication became strong really fast within a week and I was super jittery!! They have all given me adverse side effects, like headaches, tightness in all my muscles, inflammatory problems, Burning eyes and dry burning skin. Armour thyroid making me very jittery (1/2 of a 90 mg. pill is strong). I didn’t even want to go on desiccated thyroid, but when you have to take something, choices are limited. The medications are too strong in their own way. In Levoxyl the dose of half a 125 mcg pill I didn’t have severe reactions. It seemed just right and I could put on weight (for feeling better) instead of loosing wt. I’m also very petite and tiny in size. I don’t know how to fix this problem, I only know Levoxyl was a good fit on the dose I was on. This is all complex and beyond upsetting when nothing is working out with the other medications. I’m trying to hang in there. I’m so sick of dealing with doctors over this. A lot of stress all around.

July 29, 2013 at 10:06 pm
(424) penelope says:

I have been taking levoxyl and a compounded T3 for years now– best combo. But– with no levoxyl my endo put me on the generic and I had headaches for weeks and muscle aches. Am now doing a compounded T4 with the supplemental T3– no more headaches and back on track

July 29, 2013 at 10:07 pm
(425) penelope says:

I have been taking levoxyl and a compounded T3 for years now– best combo. But– with no levoxyl my endo put me on the generic and I had headaches for weeks and muscle aches. Am now doing a compounded T4 with the supplemental T3– no more headaches and back on track
there is a filler in the generic that is problematic for some people

July 29, 2013 at 10:11 pm
(426) Kim M says:

Glad to see this thread. I’ve been on Tirosint since the recall of Levoxyl. Levoxyl worked great. I’m having side effects on Tirosint like memory issues, upset stomach, drastic weight gain without a change in consumption or activity, muscle aches and on and on. I typically have a sensitivity to almost all generic medications so I’m nervous to try the generic by Sandoz, but I’m getting desperate. Can anyone tell me their side effects on the generic by Sandoz so I can decide if it is worth trying? Thank you.

July 30, 2013 at 1:58 am
(427) Anne says:

Kim M: Please read my posts 343 and 420 for details that may be helpful. For me Sandoz is close to Levoxyl. The difference I find is that I wake up a couple times at night, that did not happen to me before…..but I do go back to sleep. Also, I am lacking the energy that I had, which in time may be corrected. I’m glad I tried it.

July 30, 2013 at 3:06 am
(428) cabro says:

@Carol, in response to (411): I was told that with Tirosint, I could eat shortly after taking it. So, try taking it when you get up. According to my endo, you don’t have to wait 30-60 minutes to eat.

@Ed: I hope your GP will help you. Mine did 7 years ago. I still had my thyroid and Armour was so much better then.

@Karen: There are multiple websites with multiple different ingredients listed for Levoxyl. However, the NIH site has three Levoxyl manufacturers listed, and I have bottles of Levoxyl from Monarch, which is not even listed but is a subsidiary of Pfizer. I’m not sure why they have two listed for “Physicians Total Care.” http://dailymed.nlm.nih.gov/dailymed/search.cfm?startswith=LEVOXYL&x=13&y=12 Click through, and you will see that King has the most inactive ingredients. Wow.

July 30, 2013 at 3:10 am
(429) cabro says:

Anne, Thank you so much for your report on Sandoz levo. That is encouraging!

July 30, 2013 at 3:16 am
(430) cabro says:

I read today that several people have encountered a price **increase** with Tirosint. As if it weren’t already too expensive! Looks like they want to take advantage of the Levoxyl recall. I guess nothing surprises me anymore.

July 30, 2013 at 5:12 am
(431) Karen G says:

Thanks Cabro for that info. Never checked the NIH site.

I received my Armour made by Erfa in Canada yesterday – 7 days from date of order. It ships from British Columbia , Canada via air. Please see my post 299 for info on that thyroid med. Quite different from the Forest Armour made now in the U.S. ( The Forest Armour of today is very different from the OLD Armour that you tried Cabro 7 years ago.) It has Opadry White for color(this is a mineral based agent, not a dye). They added more micro crystalline cellulose to it. I tried the old Armour more than 10 years ago, and liked it very much but my doctor stopped prescribing it(Big Pharma was doing all possible to knock it off the market) so I went to Levoxyl.

There is a Web Site “Old Armour vs New Armour” for more info on difference.

The Erfa Armour has nothing in it that could bother me, so I am very optimistic. No microcrystallinecellulose , no anti inflammatory. Just magnesium stearate, sugar and talc. I will report back later on how I do on it.

July 30, 2013 at 5:41 am
(432) Karen G. says:

Ed: I took 2 days of the Synthroid by swallowing it after learning it was NOT effective sublingually, and had some terrible side effects – sore throat, blurred vision, nausea- similar to when I took Synthroid in April. My Erfa came just in time however. Will report on how I do on that later. It came much sooner than the 2-4 weeks delivery I was told earlier by one agent at North West Pharmacy.

July 30, 2013 at 8:49 am
(433) Bonnie says:

I am not familiar with any of those manufacturer’s brands other then King Pharmacy. Do those manufacturers make Levoxyl any more? Curious.

Personally, I hope they don’t reformulate Levoxyl
from what I am familiar with that I’m unable to take it when it comes back out. I thought I read somewhere that they weren’t going to reformulate Levoxy. So much controversy.

July 30, 2013 at 10:01 am
(434) Bonnie says:

http://www.medscape.com/viewarticle/804201

Information on Levoxyl reformulation in 2014?

July 30, 2013 at 10:24 am
(435) Carol says:

Kim M (#428): I stopped the Tirosint and switched to the Sandoz levo a week ago. I haven’t noticed any side effects. It’s only been a week and my energy level is still low – going to give it time. And then do the labs.

The side effects on the Tirosint were debilitating for me. Thankful that many others on this forum shared that I was not the only one. And as cabro mentioned she thought the manufacturer was increasing the price & taking “advantage” of the Levoxyl recall – that’s exactly what my phamacist said.

July 30, 2013 at 10:36 pm
(436) Ed says:

@Cabro: sorry for misspelling your name on post 414,autocorrect can be such a pain. I read your post 430, thank you, I really hope GP feels like helping the day of my visit.

@ruby post 416, you sound exactly the same as I was thinking after taking the Sinthroid (sic purposely because it is garbage, I can’t see how anyone tolerates it, I’ve talked with quite a few local to me that can’t handle it either) and feeling lousy but still pushed on hoping it would pass, we’ll it didn’t. So I put them in the drawer, closed it thinking I don’t need the thyroid meds since I have half a thyroid, I can get by for a while. Wow, I was never more wrong. After about two months without any meds I was as close to the bottom as one can get. I was lucky to find a pharmacy that had a few Levoxyl left, and I’m feeling better every day. But I must find Erfa or Armour fast to be able to keep a few Levoxyl until I can find a suitable med for me. My point to you is, if you are not producing those valuable Hormones coming from the thyroid, you’ll end up as I. Which was a very bad place. Stay in tune with your body, if you’re feeling bad, take charge and get the meds you need. I’ve read very few complaints of the natural desiccated types of thyroid meds until I find one that agrees with my composition. Hopefully I won’t need to go through to many Docs to find the right one who does what I need and want under his direction and experience
I’m sure someone from Pfizer knows the complete truthful story behind the Levoxyl, but I’m fairly positive we will never hear it or know of it. That seems to be the way of the world anymore. Sad but true.

July 30, 2013 at 11:00 pm
(437) Ed says:

@Karen, thanks for the link. I’m looking that over next. I’m really anxious to hear from you regarding the Erfa. My thoughts are with you, hoping it will be the one that works for you. Lots of luck.

I’m afraid to read the link Bonnie put up there.

But if I can get a natural and it works for me pfizer can shove it in 2014. That far out there is just wrong. I started to rant and rave but backed it out. I think I’ll be glad I did after i press submit. I’ll save that for Pfizer.

Take care everyone,

July 31, 2013 at 12:15 am
(438) Karen D. Garman says:

Hello everyone…I’m also not doing well without Levoxyl!! I too have called Pfizer twice and the second Pharm I talked to was a jerk. She could not have cared less about me or us. I’ve been on 6 other thyroid meds and Levoxyl was the only one my body liked and now with the recall I’m here again. Lost half of my hair, tired, memory & brain issues, night sweats, hot flashes, depressed, crying…just plain sick. My heart goes out to all of you and thank you all for sharing with help and info. I see my endo 8/1 shall see what she says…after reading post I’m going to ask about Sandoz. If I had know about the recall I would have stock piled it thats for sure. Pfizer still says not till 2014 sometime. Glad they’ve made money off of us and yet don’t care to hurry and fixed the problem getting it back on the market to help us live. As I’ve read on other message boards maybe …there should be a law suit again them and I’m all for that!!

July 31, 2013 at 2:04 am
(439) ruby says:

Thank You Ed for replying I will pay extra attention to my symptoms. I thank you for sharing your story I think I am going to ask for a back prescription just in case.

July 31, 2013 at 5:45 am
(440) cabro says:

No worries, Ed. And let us know how it goes with the GP.

July 31, 2013 at 8:51 am
(441) Karen G says:

Ed, good to hear your update. Thank you for your kind thoughts. I have had no negative side effects on Erfa- it has been three days today. I have some mild sweats, but that is expected as the med gets levels back to normal and will go away once normal levels are achieved.

One other inactive ingredient in Erfa in post 433 is cornstarch. In very minimal amount.

After a few days on Synthroid(had to stop that awful med) I feel the TSH has improved from the 14.77 of last week. All other tests- thyroid ultra sound , thyroid peroxadase and one other are OK. My fasting blood sugar was a bit high, but that will happen when TSH is high. When hypo it is best to follow a strict low glycemic diet( good for any person). Now on Erfa, the hypo symptoms are ebbing.

I believe while taking the compound with Vit C powder I was not careful in making sure I got all the med that went into the glass of water. I slowly became hypo. The pharmacist reassured me that their compounds are batch tested for potency and consistancy. So it was my fault, not the med. The anti inflam vit C filler was too much for me,

I don’t recommend going entirely off meds. When going through trials, I stopped one med one day and started a new one the next. The T4 in all the synthetics is the same formula. The hypo symptoms creep slowly up on you. When your TSH is high, your lipids, your blood sugar, your Vit D and your metabolism go out of range. It does not help your emotional state as well.

July 31, 2013 at 9:06 am
(442) Karen G says:

Karen D Garman, welcome! This is a one stop Web site for great info on thyroid meds. If you cannot find your answers here, it is not “out there “.

Up to 442 posts now – it was less than 100 when I started. I recommend new readers to read the entire Forum however long. Also please check out all of Mary Shomon’s sites. If you have a question Karen, just ask. Almost any time of day you can open up your window to our Forum and there is someone listening. You are not alone. Not every pharmacy carries Sandoz, you might have to call around to find it.

July 31, 2013 at 9:10 am
(443) Lucien Berardo says:

Ed: Good to hear your update.

We too got the Erfa in a week. My wife is doing well on it so far. I will update as story unfolds.

Welcome Karen D. Garman and other new posters. Take care everyone.

Regards,

Lou

July 31, 2013 at 10:24 am
(444) Karen G says:

Quick comment for Ed: I am taking the Erfa with a glass of water and swallowing. I don’t want to miss any of the benefits!

July 31, 2013 at 6:14 pm
(445) Bonnie says:

I want you all to know that I love you and care about you. <3<3

Please continue to share and update everything on your mind and in your heart and I will do the same. :)

July 31, 2013 at 7:02 pm
(446) glenna says:

Hey everyone,

Just returned home from the endo and he said my TSH was now up to 3.75, from 1.04, in May. I’ve been on the compounded meds, thought they were working, but apparently not. I felt great Friday, Saturday and Sunday.Not so good Monday, better yesterday and horrible today! It is like an awful roller coaster ride.

My thyroid is swollen and everything aches, brain fog, forgetfulness, you name it.

Doc was not happy that I went with compounded T4, even though he likes compounded T3. He wants me to try Tirosint, which I have tried and it caused horrible stomach pains. I will need to purchase two prescriptions to get the dosage he wants me to take. Needless to say, I am very unhappy and discouraged, to make matters worse, tomorrow is my birthday and I am supposed to go on a trip to the Texas Hill Country! Oh, well, I guess I need to be thankful to be alive.

My love to everyone out there in thyroland…

July 31, 2013 at 8:50 pm
(447) Bonnie says:

Happy birthday Glenna!

I’m sorry to hear about the problems your encountering with the compound and the roller coaster symptoms.

Your TSH is way better then mine. My last TSH was done in June and it was almost 15. Keep in mind that when I was on Levoxyl my TSH was 2 and balanced. Things got out of control after the recall and spiraled out of control with trial and error of meds, plus being off meds in between. I wonder if I’ll ever feel right.
I’m still not on anything consistently yet.

Thanks for your encouragement to not give up and thanks for your update,

Enjoy your birthday tomorrow. :)

July 31, 2013 at 9:39 pm
(448) Ed says:

Good Evening everyone ,

First and most important of all is Happy Birthday to glenna, and many more to come. Good luck with the Tirosint, maybe your body chemistry changed and you’ll do better this time around.

@Bonnie,(447) we all share a common bond here, and for the most part all are suffering rejections/bad reactions to synthetic state of the art thyroid meds that don’t seem to live up to their claims. After reading a survey on another site I’m hoping NDT works for me and anyone else who decides to give it a try. Oh BTW, I feel the same as you, but being male, I have trouble saying things like that. So if I may ill just piggyback off you post and just say Me Too! LOL

@ Lucien, that was quick delivery for you too, similar too Karen G. I’m really hoping your wife and Karen G both do well with it. (Me too if and when I can get it, have appt in 5 days with GP, I cancelled my Endo appt, she already said no NDT, so she was no help for me).

@Karen G., I think the full glass of water is a good idea. I believe that was also recommended by Pfizer for Levoxyl but not many knew that important part when taking that med. I’m still pulling for your success on the Erfa.

Welcome Karen D. Garman , I think you’ll learn plenty in here, plus it feels good to know you’re not alone, even if you feel bad from the meds you may try. Hang in there we’re working through this mess. Just keep thinking, we will all be rich soon when Jackie Chiles (The attorney on Sienfeld who played similar to Johnnie Cochran) takes our case for pain and suffering and wins big. HaHa

Bye all for now.

July 31, 2013 at 10:37 pm
(449) Karen G says:

Glenna:

That news is disappointing . I too had that problem with my last compounded med, but I was breaking the capsule open and puting the powder in a glass of water, and I know I did not get all the med when I drank it. The Vit C powder was too powerful of an anti inflammatory for me anyway. I had to stop the compounded. All fillers available are potent anti inflams. Even when I took the entire capsule I had some feeling I was not getting enough T4 on the last script with Vit C. Did you mention this to your pharmacist?

Are you aware of the new numbers for normal thyroid TSH? Norms are between .3 and 3.0. Some labs have not updated.

Here in SAN I would also have to buy 2 prescriptions of Tirosint to get the .175 mg daily dose I need. In May a pack of .15mg was $42. Today $82.00. It would cost me $164 a month! Hearing more on this Forum and from friends of the possible stomach and intestine pain and possible damage, I would never go back to Tirosint. I cannot imagine a business making money on someone else’s suffering which seems to be the goal of Tirosint by doubling prices.

I am three days now on Erfa Armour and so far so good. So please don’t be discouraged . There are still some excellent options. The only way you could determine if the compounded was right for you was to try it. So you have accomplished something.

Happy Birthday! I am sending you some best wishes from California.
See message to follow. This will bring a smile to your face for sure!!

Karen in San Diego

July 31, 2013 at 10:50 pm
(450) Karen G says:

Glenna and Bonnie: I just thought this would bring a smile to your faces. Here is some sunshine from southern California!! We all need some smiles at this point.

http://www.youtube.com/watch?v=cqxTUxzOceE

Hope this works and hope I don’t get kicked off the forum!

July 31, 2013 at 11:02 pm
(451) Karen G. says:

Bonnie:

The people on this forum are a loving and caring group of people and I would feel comfortable sharing.

I had a 14.77 TSH reading last week, I know it has improved this week. Last week I had a horrible “dark mind”. This week I am better.

I highly recommend a low glycemic index diet. Your blood sugar levels and metabolism are not functioning correctly with high TSH.
We all can get through this together.

August 1, 2013 at 7:49 am
(452) Karen G says:

Glenna: If you try the Tirosint again, can you check with your doctor to see if it can be taken sublingually to eliminate the stomach pain, or even in two doses instead of one? There was a recent post that said a doctor told them it could be taken with food.
Or, you could be sure you eat something 30 minutes after you take the pill. Certainly there must be options on how to avoid the stomach pain. Did any one come up with a diagnosis on what exactly causes the pain?

August 1, 2013 at 10:52 am
(453) glenna says:

Hi everyone,

Thank you so much for the birthday wishes Karen, Bonnie and Ed!
I woke up feeling sorry for myself ; ), but I am going to make it a good day.
It is a beautiful, sunny day in the Big D, will only get to 102 this afternoon.

I informed the endo about the stomach issues and he nodded, but wanted me to try again. He kept saying that the Tirosint was pure. If it doesn’t work he may just up the dose on the compounded and see what happens. He did mention that around 30% of his patients are experiencing horrible issues on new meds. It still boggles my pea brain why three years ago thyro meds didn’t bother me, they weren’t all that effective either, but they didn’t cause horrible issues. Perhaps the evil geniuses at Pfizer put chemical in the pills to keep us coming back…OK just going off the rails now.
Honestly, I don’t really understand why I feel so achy and crappy. Went from great to crappy.

I do know that others have it way worse than I do, maybe my body is at a new normal. Oh, I have been off the health eating for a few days. My favorite traveling food is Bugles and dark chocolate and it was a long drive to Houston to see the endo…

We will all keep up the fight and be victorious, sooner or later.
My love and wishes for perfect health to all.

August 1, 2013 at 10:56 am
(454) glenna says:

Karen G.

Loved, loved, loved the surfing bulldogs!!! My puppy, Luce, watched with me. We did the “swim” together and danced around the room. She loves to watch other dogs on TV, it is really hilarious.

Laughter is certainly the best medicine and has no side effects other than sore cheeks!

Have a beautiful day!

August 1, 2013 at 11:55 am
(455) Karen G says:

I have another great one I will send next week. It will make you ALL laugh.

Did you know that caffeine interferes with T4 absorption? I try to take dark choc 4 hours before or after med. Soy, brocolli, cabbage, spinach, other cruciferous veggies, a lot of medicines, also interfere with T4 absorption. I will send you the Web Site on that issue in case you are not familiar with it. Happy Happy Birthday, Glenna, have a great , GOOD day.

Bonnie: Don’t be surprised if I connect with you on Facebook. Will try today at the library. You are also in the Dallas/Fortworth area? You mentioned your last name in a previous post. See you later on the Forum or maybe Facebook. Please try to take some kind of thyroid med every day. The symptoms of not enough hormone are much worse than the symptoms of some of these meds we are trying. The effects that low thyroid has on the other parts of the body can be very serious. Puts the lipid profiles way out of range for sure.

I sound like a mother!!

August 1, 2013 at 1:50 pm
(456) Carol says:

Glenna: Hope you have a very Happy Birthday!

I had issues with the Tirosint and my endo said it was “pure” also.

Have you tried to Sandoz T4? I started at the same dose (50 mcg) I was on w/the Levoxyl and it’s been a few weeks. I don’t feel wonderful but I’m okay for now. I need to take something and the Sandoz is better than nothing. I think the Tirosint is out of my system – all the symptoms are finally gone.

Karen: Loved the Beach Boys song/video. Love California : ) Thank you!

August 1, 2013 at 4:07 pm
(457) Glenna says:

Hi Carol,

You know, I did try Sandoz. It caused my blood pressure to sky rocket and I had horrible chest tightness and numbness in my arms. Of course, I had tried several other meds previously and it may have been just a bad cocktail of stuff.

Were you the same person who had intestinal damage from the Tirosint?

Someone mentioned earlier that they found some old Levoxyl at their home and it seems like they are trying a combination of levoxyl and other thyroid med and weaning off the Levoxyl. I actually have some lower dose levoxyl and thought about asking the doc if we could add crappy stuff and see if that helps me get accustomed to the generic and then up the dose.
i go back to work in a couple of weeks and need to be better balanced than I am. I teach at a discipline alternative school and can’t be more insane that my students!!! : )
I really feel sorry for those of you who have real jobs.

August 1, 2013 at 7:11 pm
(458) Carol says:

Hi, Glenna –

No, not the same person – my side effects subsided after I stopped taking the Tirosint. No permanent damage. So grateful for that.

Hope you are enjoying your birthday and you got to go on your trip to the country.

Thank you to everyone who has shared their experiences here on the forum. I feel empowered when speaking to the endo and facing what is next.

August 1, 2013 at 10:22 pm
(459) Ellen N. says:

Hi all! Thanks for the welcome Karen. Just wanted to update on my journey. I have been on Mylan for one week. Still experiencing muscle aches, joint pain, back pain. It is not constant and not intolerable, but i worry that as more drug gets into my system, the more severe it will become.

I have obtained the Sandoz generic from an independent pharmacist in my area. It was not covered by my insurance, as it was also a generic and I had already obtained a three month supply of levothyroxine (Mylan) during the same period. I am a little worried about switching to the Sandoz product. Some are doing well on it, but as many have had difficulties with it.

I am probably going to trial it starting tomorrow. The nurse at my MD’s office did not recommend taking a few days off in between drugs. I am hoping and praying all will go well, and that the Sandoz product will work for me.

All prayers are welcome and I will keep you all in my thoughts and prayers, as well.
l

August 1, 2013 at 11:23 pm
(460) Karen G says:

Hi Ellen:

I tried Sandoz 3 months ago and the only negative I experienced was a feeling of too much levothyroxine. I lowered the dose down from the .175 mg I was taking on Levoxyl. My doctor recommended starting a new med the next day – I have tried several – and not to skip a few days inbetween. An earlier post of mine was misleading when I said that it would take a least a month or more to get most of an old med out of one’s system. I did not mean to stop taking another med in the interim. The half life of synthetic levothyroxine is 6-7 days.

I had a negative reaction when I took Sandoz more recently inbetween getting a refill on a compounded, which I preferred over the Sandoz, and I had some bad effects that the doc and pharmacist said were caused by the abnormal TSH not the med. I tried compounded for 2 months, and had to get off due to reactions to anti inflammatories in filler.

I did not do well at all on Mylan. Glad to hear you are getting off of it.

I also understand that adrenal problems can have a bearing on tolerating a thyroid med. So many things to consider. Every individual person can differ in reactions. So far I am doing well on Erfa Armour thyroid from Canada.

Hope it all goes well.

August 2, 2013 at 5:53 am
(461) cabro says:

Karen G,

Re: Tirosint and “stomach pain.” It wasn’t stomach pain for me. It was bowel – both upper and lower intestine. It was like bad reflux, only deep in the bowel. No diarrhea over 2 months, just burning. I am assuming the direct T4 was too harsh for me. Based on that and years of treatment in the ’80′s with sublingual allergy drops, I would be cautious about sublingual administration of Tirosint.

Yes, my doctor said no coffee, either (black or otherwise), for 45-60 minutes after taking T4 (Synthroid says 30-60). Wish I could convince my sister, but her endo said, “No problem. Just be consistent.” I get the consistency part, but still…..She’s overdosed anyway, so maybe it’s OK in the end. Fiber also interferes with T4 absorption. Sheesh! I have to draw the line somewhere….or go on the Paleo diet…..

Glenna, I am the one who suspects ongoing injury or damage to the bowel from Tirosint. It is because of the ongoing GERD I have (Barrett’s). It finally got better when I started taking my Nexium 30 minutes before my T4. Also, I am the one who dug out my “old” Levoxyl and will try blending it with Sandoz, probably after Christmas. Stay tuned. I’m sorry you aren’t doing as well without Levoxyl. I was a teacher, too (retired), so I understand your need to feel better on your med!

Wishing you all better days. And soon!

August 2, 2013 at 9:30 am
(462) Bonnie says:

Karen, Glenna, Ed, Cabro and others who regularly post on this forum:

We are currently traveling north to visit family members for 10 days. I wanted to share with you that I did manage to get 27 Levoxyl in the strength I take from a pharmacy up north. My parents picked them up for me so I can get them tomorrow night when we arrive in Pa.

I took one of one my last “golden” (from my last refill) Levoxyl pills today and will take the other one tomorrow, then I’ll have the ones my parents have waiting for me which will get me through this trip and will give me a little over a month of medication. I called all pharmacies everywhere imaginable and am thankful I could find some. No one has any because of the recall, so I’m thanking God for this and for once in three months I can feel myself and NORMAL again. I realize, and its frightening that this is a temporary thing and won’t last as the pills run out. I’m trying to take a break from all the anxiety and poor health this recall has put me through. I just pray and pray Levoxyl comes back earlier then we’ve been told. I hate going through this nightmare again. For now I’m taking a break from the dark side. After taking one of my pills this morning I really feel so much better. I’m hoping to put on some weight now with eating better, I’m getting pretty thin (sadly).

Have more to comment on so I’ll leave another reply.

August 2, 2013 at 10:27 am
(463) Ellen N. says:

Morning Karen and others!

Thanks for the info on your experience with Sandoz. Glad that you feel well on and are able to acquire the Canadian product. Started Sandoz this am, so we’ll see. If it goes OK, I will try to stick out the 4 weeks and have levels checked. I will keep in mind that people are finding it stronger and let my MD know.

You are all such a blessing!

August 2, 2013 at 1:43 pm
(464) Bonnie says:

Karen: I couldn’t bring that video up but I’m sure it was cute.

Being off my maintenance dose of Levoxyl for 3 months and all the mental and physical anguish involved (with being on and off medication) plus the fact I was/am so DRY everywhere, I haven’t been drinking anything but water (nothing else as a beverage). When I would try any tea or coffee, my muscles would cramp even more being on those other thyroid meds. and my tongue, mouth and eyes would get even drier. Complex to explain, but I could have some coffee when I was on Levoxyl, before everything went whacky. I don’t have the muscle pains and other things on the dose I was taking. Being back on this med for a few days should really help me.

I was bouncing around on the other medications. They are all horrible in my system. I was taking Synthroid on and off at the same dose when I had problems with Armour. Armour had me so shakey, filled with anxiety and mood swings, intense muscle aches, fever, and burning tongue, numb fingers, tooth sensitivity to hot and cold, etc. Not convinced I need a t3, just the t4. The endocrinologist should check those things before a t3 is given, but so far all they’ve done is bounce me around so I take something. Synthroid is just as nasty with crippling side effects while I’m on it. Muscle aches and pains like crazy, etc. I choose to take that over anything else I have weighing the adverse symptoms of each drug. I know they have all felt very strong and so different then what I was used to. On each drug Id run low grade fever of 99.3 or more and pour into a sweat all over a different times. experiencing a Dark Mind is right!!

August 2, 2013 at 1:50 pm
(465) Bonnie says:

Continued from last reply.

Anyway, I try to eat as healthy as possible under the circumstances the way things have been. It’s been more like survival for me to eat enough.

I’m glad you are doing well on erfa, Karen.

On Facebook I am Bonnie Deitz-Benner if anyone wants to add me as a friend. Haven’t been as active there in my state of mind. I meander around checking out what’s on the news feed from friends these days. :)

August 3, 2013 at 7:03 am
(466) Ed says:

Good morning everyone,

Nice to hear Erfa is agreeing with you so far Karen, really hope it continues. Your post sound really good.

Bonnie, your find of Levoxyl was a great feeling I bet. I know it was a mental boost for me. And now that I have around two weeks in me I’m coming back to life and not quite so moody, although I guess that depends on who you would ask HaHa. I can’t believe how dumb of me that was to think I could do without. One of those irrational things I did when angry and upset to put it mildly. I’ll see my GP Tuesday , got my wish list ready. Feeling kind of anxious only because I don’t want to feel disappointment at this time when I’m feeling fairly good in general.

Karen D. G. I haven’t seen anything from you lately. How are you doing? I bet your still reading all the posts above you.

Hope you’re doing well too Ruby.

Have a good day everyone,
Bye for now.

August 3, 2013 at 12:06 pm
(467) Kim says:

I have become hyperthyroid as a result of taking the generic meds. My eyes were affected. They were dry bloodshot and yellowing blurry vision, when I walk tears flow down my cheeks… I thought I had “pink eye” it was so bad. So I stopped taking ANY meds. My eyes are clearing up now. It will only be a few weeks until I become hypothyroid again all this while I am working on one of the most important work projects of my life!!! Ahhh!

August 3, 2013 at 1:24 pm
(468) Karen G says:

Hi Kim:

I am so sorry to hear that. What thyroid med were you on ?

Per Medscape, the thyroid med Tirosint is much more potent than the other meds and you would need a reduction in dose compared to what you were taking on Levoxyl. I don’t know your history, did you post earlier?

I had to reduce my dose when on Sandoz. Different meds, different folks, different reactions, but generally these two meds have a greater absorption rate than the others, I will get some back up documentation to you ASAP. Is there a chance you were taking one of these meds?

Even without knowing your history, I cannot encourage you more to check with your doctor and stay on a thyroid med. Obviously the one you were on was not good. I am just coming OUT of being hypothyroid, with a TSH of close to 15, and that experience was AWFUL. What did your doctor say about the hyperthyroid? I would think he/she would reduce your dose and/or change your med. When hypo thyroid I had severe mental confusion. Not too good if you are working on “most important project”.

If you were on Mylan T4, that med has a potent diuretic in it – mannitol.
Might cause the draining eyes. It also has many other inactive ingredients that could cause adverse reactions. We have almost 500 posts now, so it would take time to go back and read all of them. You can find a list of inactive ingredients in each med by checking their individual Web Site.

We are all here to help.

August 3, 2013 at 1:52 pm
(469) Karen G says:

Ed: Hope your apt goes well.

I am not getting as fast as a recovery as I would like on Erfa . My doctor told me to take 60 grain for a month, then up it by 15 grains for the next month, then after that month go to the 90 grain which is the equivalent dose I was taking on Levoxyl. The Armour T3 goes quickly into the blood and could cause the heart rate to go up.

Knowing my Erfa would be a trial, I bought the 60 grain pill in a bottle of 100. On my current directions that would give me enough med to almost get me through the third month. North West Pharmacy in Canada did tell me I could return it for full refund if it did not work. They only stock it in 60 and 30 grain. So when ordering the 90 grain, you pay the $49.95 and get a bottle of 60 grain and a bottle of 30 grain. Shipping is $9.95. Each bottle has 100 pills.

There are Web Sites that show conversion from the synthetic to Armour, but these are general numbers, and each patient has to be evaluated for appropriate Armour dose based on health history and weight. Heart patients/the elderly must be started out slowly on Armour. Not that I am THAT old. I still walk 3 miles a day with my collies. But I appreciate the doctor’s concern as I had heart surgery in 2004.

It will be a week tomorrow. At least so far no bad side reactions as I had on Synthroid and Mylan and the compounded with anti inflam fillers.

Best wishes to all.

August 4, 2013 at 5:38 am
(470) cabro says:

For any of you who have had a thyroidectomy and for others who might be interested, this is a good article. http://nahypothyroidism.org/the-t4-vs-t4t3-thyroid-treatment-controversy-continues/

August 4, 2013 at 6:25 am
(471) Ed says:

Hi all,

Karen, Thank you for the conversion site idea, I think I’ll take my tablet with that site loaded along to my appt. Tuesday . May help if GP agrees to NDT. It’s great to know Erfa is still good with you

Cabro, your link had some very help insight for me. I read one comment on the page that makes me want to do the cortisol test using saliva collected at different times during a 24 hour period. I did the 24 hour urine collection, Endo says creatinine numbers was high so was cortisol, said you collected an hour to much. I told her I follow directions exactly for 24 hours, topic was ended by Endo. I think she is seeing I gave them 3000 ml of urine to work with that I collected for more than 24 hrs. I also did the little pill, then got blood test next morning. Normal. Sorry forget the purpose of that test .

Anyone have any Adrenal issues along with Thyroid???

Contined……..

August 4, 2013 at 6:53 am
(472) Ed says:

…..continued
I’ve been lead by the Drs. for so long, beginning to get my own thoughts on this whole Thryroid/Adrenal/Pituitary Axis.
I’m thinking Adrenals because I’m wide awake at 4AM sometimes 3 almost every day, ready to go for the morning. By 3 or 4 PM I crash with no energy left, most days. I did the 24 hr urine collect on a Sunday, my best day because I don’t work weekends and don’t deal with same stress levels. So that was probably a mistake. I think I need saliva test on my worst day. I’m thinking it could be much different.
I have lived and still do, less than 50 air miles from Three Mile Island. I was probably around 18 when it did its partial meltdown in the mid ’70′s. I drank lots of milk then and was still growing, physically and hormonally. So that’s why I have been looking at thyroid only, until now. I’ve worked with benzenes and have even handled mercury unprotected way back then. I’m sure that didn’t help at all.

Any thoughts or ideas on Adrenal exhaustion? Mine are working. But are they working on the same clock I work on? Which is day shift 7-3.

Have a good day.
Bye for now

August 4, 2013 at 7:19 am
(473) Ed says:

I retread my first post. Looks like a first grader wrote that one. I think I would do better if I worked on a normal pc with a keyboard, without autocorrect . Tablets are tough, thoughts are faster than my rate of typing on the on screen keyboard.

I may be out of line to ask about personal adrenal issues. Maybe would have been better to say differently. Maybe like.

Does anyone have any knowledge of the thyroid/adrenal/pituitary connection?

Not everyone wants to share their medical history. I respect that. For me it doesn’t matter at this point. I’d like to feel better and soon would be good too.

Thank you,

August 4, 2013 at 11:49 am
(474) Karen G says:

Ed: You are getting your thoughts across beautifully. No worries about offending anyone here – we have a common bond as you mentioned earlier and are all interested in helping the other person.

In 2008 I did the saliva testing for all hormones, including cortisol and I had a very high night reading. I was directed to take 500 mg Vit C along with 500 mg pantothenic acid(Vit B 5), three times a day with my meals. I did this for about 8 months – then retested and the cortisol was normal. I am not inferring that is what you do without a doctor’s supervision however. I continued the B-5 taking one 250 mg at dinner but I stopped that last year when my thyroid levels started to fluctuate while on Levoxyl. The same recommendation is in all of my “Natural Medicine” books. Vit C and B5 work together to stimulate the adrenals. I will reference a couple of those books later.

I did read on one of Mary Shomon’s posts that adrenal fatigue must be treated before the thyroid supplementations can work efficiently. I will try to find that site.

I know too much radiation is one cause of Hashimoto’s Disease. (See my post 332/3. I would think there are groups still following resident’s health issues in that area after the 3 Mile accident. It might be helpful to connect with them if you have not already done that. I believe that there is no statute of limitations on making claims for damages if your thyroid issues were a result of that accident. I am interested in other comments coming on that issue. Will check the Forum later.

August 4, 2013 at 9:08 pm
(475) Annie says:

Have been on Levoxyl for over a decade because of a diagnosis of hypothyroidism. Then I was surprised like the rest of you when I went to pick up my usual prescription and found out it had been changed to an unknown generic. I had them change it to Synthroid based on a conversation with my doctor. Within one week after beginning Synthroid, I had gained 6 lbs, experienced dizziness, abdominal swelling, fatigue, and sleeping 13 to 16 hours a day. That was a few months ago. Since that time, I have continued to gain weight, no longer have a waist, have painful abdominal swelling, am lethargic, dizzy, now have painful veins in my legs, still require lots of sleep, and absolutely have no energy. I am relying on coffee to keep me awake, and I had to buy all new clothing (I was 118 and am now 140). As I read about other people’s problems with the switch from Levoxyl, I have no idea what to do. I’m afraid to throw another unknown “concoction” at my body. Question – is everyone researching on their own, dealing with their primary care doctor, or has anyone gone to an endocrinologist for help?

August 4, 2013 at 9:51 pm
(476) Ed says:

Hi Karen,
I am thinking my nighttime cortisol is high and low in the afternoon when I’m feeling zero energy levels around 3 or 4 PM. I’ve seen other websites talk about hydrocortisone or prednisone to let the adrenals rest and heal on their own. I like the regimen you mentioned. HC and prednisone seem a bit harsher than vitamins would be. I don’t intend to self medicate, but I am looking for a Doctor with an open mind to listen to what I have gleaned from yours and others experiences to come up with a plan consisting of trials of different methods that have worked for others and may work for me. So my appt Tuesday may be my first or it may be first and last for thyroid treatment. Fired Endo when Synthroid gave bad reaction, she said to wait from end of May until my next scheduled appt this week in August. She refused to give Armour a try. So I’m hoping GP will go along with Saliva test and be open to Erfa or Armour as a trial at least.
Taking the Levoxyl I lucked into finding, makes me feel better but not quite like I think I could or should feel energy wise. So something else is going on, maybe as simple as add some T3 or vitamins to fix up the tired Adrenals, or even something else. That’s where the open mind will come into play. If GP doesn’t feel up to the challenge I’m hoping she will say, I know someone who sees lots of patients like you, let me give you a referral. I’d like to get on a path toward a good solution that works for me. After some trials and error if that’s what it takes.
I’ve heard of someone from this area moved to NC. Went to Endo for related problems, Doctor says oh, I see your from TMI area. Must be a red flag to some who know what they are doing, instead of those collecting co-pays and keep you coming back with no resolution in sight.
Thanks Karen

August 5, 2013 at 1:55 am
(477) Tonya (369) says:

Hello everyone,

I’ve been on Tirosint for about 2-3 weeks. I feel well, but I have an off and on problem with burning on my lips and sometimes my tongue. Perhaps it is too strong since it is supposed to be pure. I’m going to ask my endo to reduce the amount I take, currenty I am on 88 mcg. I have also experienced tightness in my chest once or twice, something I have nerver experienced before. Fortunately no burning in the stomach or abdomen like some of you have experienced. Perhaps my body is adjusting from the side effects from the synthroid. Hopefully we will all find relief from our woes soon. May God bless you all. I’ll keep you posted on my experience with Tirosint.

August 5, 2013 at 4:36 pm
(478) Karen G says:

Ed: I did not find the Web Site I wanted to send you on adrenal fatigue, but if you key in “adrenal fatigue” on the search engine above on the About Thyroid.com Forum site we use, you will see a panorama of sites on the subject.

One of the books I have that discusses the Vit C and B5 support for adrenal fatigue is Bottom Lines’” Prescription Alternatives” written by Earl L. Mindell, RPh, PhD and Virginia Hopkins, MA. Virginia Hopkins is a well known, respected and well published health advocate/professional for alternative treatments.

Tonya: Keep us posted!

August 5, 2013 at 4:53 pm
(479) Karen G says:

Annie: I see posts from many people who have been treated by their primary or an endocrinologist. The general consensus, I believe, is that we are not getting the entire stoy or thorough evals from the doctors. So…we turn to a Forum like this to get others experience and knowledge. I know it is long, but I highly recommend reading the entire forum. It is packed with information. IF you have any guestions, you can go to the search engine on the Forum above and key in your question.

I went to an encocrinologist, and she did not even know what the other options than Synthroid or Mylan were. She did not have any idea what inactive ingredients were in Synthroid or Mylan. She was taught in school to prescribe Synthroid for all hypothyroidism. Please check out Synthroid.com to get the inactive ingredients in that med and you will understand quickly why you did not do well on it. Many posters here have said that they did awful on it. I could not tolerate it. I will try tonight to list the posts where the alternatives for Levoxyl are listed.

August 6, 2013 at 7:19 pm
(480) Ellen N. says:

Hi Karen and others,

I have found the discussion on T3 and T4 needs in a body very interesting. I have been maintained on Levoxyl and my doctor always reports on my levels, but I realize my knowledge has been cursory. I have also felt well on the Levoxyl so I didn’t question much, although maybe I could have felt even better.

I have been on the Sandoz generic for 5 days now. Body aches have lessened. Still experiencing dull headaches, although August is usually allergy season for me, and I am reluctant to take allergy meds while not up to full strength on thyroid med. Having hot flashes fairly regularly, although slept through the night the past few days, and haven’t done that in ages!

Did make a huge mistake last week and had ice cream the first day on the new drug. Felt like I was dying, then I read the discussion on overtaxing the endocrine system with concentrated sweets. Staying on the straight and narrow since then and feeling much better.

Thanks again for sharing your knowledge, insight and research!

August 6, 2013 at 10:00 pm
(481) YoKasta Martinez says:

I saw this post about the Levoxyl shortage the moment that Mary Shomon posted it on about.com – it came as an alert on my smartphone. Within seconds of reading it, I was on the phone to my endocrinologist at Vanderbilt Eskind Diabetes Clinic (their entire Endocrinology department is there) working with him to get an alternative medication. Like several people here, he prescribed Tirosint.

Like several other people on the forum, I had been taking Levoxyl since being diagnosed as hypothyroid in 2003 – and also went through a period where Walgreens substituted generic levothyroxine (Mylan & Sandoz) for brand-name Levoxyl. What happened on generic levo was that I became suicidal and I literally put on 100 lbs. When my endo started making my Levoxyl DAW, I stabilized.

I have been on the Tirosint since March 31 – and I have not experienced any of the side effects that are in the prescribing information nor what has been reported here. In fact, the Tirosint saved me from being bumped up to the next higher dosage of levothyroxine by dropping my TSH further (down to a 1.76 from a 3.2!)

The only drawback to the Tirosint is the price – I pay for two strengths, because Akrimax (the manufacturer of Tirosint) only makes it as high as 150mcg. This is considered two prescriptions; therefore, I pay two copays.

I am going back next month for my next set of labs; in the meantime, I still have a full bottle of Levoxyl just in case things start to change. In the meantime, I’m raising hell with Pfizer until they put Levoxyl (with its original three ingredients) back on the market.

P.S. I know how ridiculous they can be; I also take Relpax by Pfizer for my migraines – it’s the only triptan drug that works, but it’s damn near $300 for 6 pills per month – and my migraines are so severe I need WAY more than that!!! Go figure.

August 7, 2013 at 6:04 am
(482) Ed says:

Hi Karen, Dissappointing to say the least, she had labs in front of her from about a week ago.
I saw that list of Doctors on Mary’s site, some look good. That’s the list I will use and start calling from there.
I’m really glad to hear you’re doing well. I know it has been a long haul for you, because mine is too.
Keep you posted.

August 7, 2013 at 2:42 pm
(483) Lucien Berardo says:

Ed:

My wife is doing great on Erfa! She is very pleased.
Hope you find a good endocrinologist soon. Good you have 4 months of Levoxyl in your hands.

Regards,

Lou

August 7, 2013 at 10:16 pm
(484) Ed says:

Hi Lou,

So good to hear your wife is doing well on Erfa. More proof that the stuff really does work.

My first day with T3 added to the Levoxyl I’m already taking . Felt a little anxious today. Maybe because of the unknown of how I would feel from the T3, or knowing I had a stressful work day ahead of me today. I calmed down a few hours into the evening after work so that may have been it. I have a 4 day weekend starting now, so that will eliminate the work factor if there is some anxiety.

I made appt with Endo, couldn’t get in until early October. Wish I could talk with him first before committing and waiting the 2 months. If I don’t hit a home run with my first choice my Levoxyl supply will get used up and I’ll go hypo again. My sense of self preservation tells me to make appointments with several Endos and cancel whoever is left after finding a match for my care. If there are any left. Not sure if that would be a good thing to do.

Any thoughts on that idea?

August 7, 2013 at 10:37 pm
(485) cabro says:

Re: documenting fT3 with labs. I am post-TT and RAI for thyroid cancer. When I arrived at my current endo’s office, I was on Armour and had been for about 4 years. After RAI, he added Levoxyl (for a consistent T4 base) to my Armour for cancer management. I had to be “suppressed” with a TSH below 0.1, which means high T4. After 18 months and a host of dosage tweaks and labs, my T3 numbers were just not adequate, given I was on Armour and should have also been converting. So, we switched to Levoxyl + Cytomel. I am fortunate that my endo could “see through” the inadequacy of my fT3 on Armour (low 3′s??), since I have no thyroid and was feeling poorly without enough T3. We tried hiking up the Armour dose pretty high, but the T4 went way out of range before the T3 got up near the top. It has been a year on synthetic. My rT3 is (still) too high. Maybe we are making progress in that area. Progress is now slowed by the Levoxyl recall and I am stuck on 100mcg. We’re testing various things along the way (ferritin, D3, B-12, etc.). This week is insulin resistance and cortisol (24-hour). My next request will be for sex hormones. If he is reluctant, I know of a naturopath I may consider seeing.

Hope this helps for the synthetic side of things. I really hope that I can go back on NDT + Levoxyl at some point, which will mean I can lower my Levoxyl (when it comes back?) and my rT3 will have come down. I did so well on Armour until the 2009 mess.

August 8, 2013 at 11:55 am
(486) glenna says:

Hi all,

Good to see that some of you are doing well on Efra. I wish I could take natural thyroid, but the T3 kills me. Unfortunately, with my delicate constitution it makes me speedy and then crashes and I have panic attacks in the evening.

Ed, wanted to let you know, if you still have the anxiety, I assume you are taking Cytomel, I take an excellent compounded slow release T3 from Piney Point Pharmacy in Texas. The first day I took it I didn’t feel anything and so on. In a few days I noticed that my joints didn’t ache, brain fog lifted and I had more energy. If you don’t have success with what you are taking I would be happy to get the info to you for the pharmacy.

I am not nearly as happy with their compounded T4, every day seems different for me. Took my 67.5 mcg of levoxyl while I was on some R and R, but that really is too strong for me.

Karen G. did you like the compounded t4 you took from Women to Women? I know you couldn’t use it due to the anti inflam stuff, but as a whole did it help your symptoms and have few side effects?

Oh, some people on another Mary S. blog posted that some of the ingredients in our generic meds come from China, so we are probably getting some major cheap crap and who knows what in our meds. Of course, the FDA doesn’t have the time to check everything that comes through, blah, blah, blah!
Someone also posted that Levoxyl could be back sooner than expected with all the outcry from users. Who knows, maybe the phone calls and letters are working. Of course, it could be false hope.

Has anyone tried Unithroid? It looks like it has a bunch of junk in the fillers.

I hope everyone is doing well. Blessings to each of you.

My endo wants me to try Tirosint again, but I am a bit nervous.

August 8, 2013 at 12:50 pm
(487) Bonnie says:

This is my story. On the way to PA (which is a two day trip), I took my last 2 Levoxyl traveling. I had been anticipating getting relief and back on track from all the anxiety of everything over the past 3 months.

As it turns out, the Levoxyl I picked up at my parent’s house looked like my pills, but after taking the first pill I really wasn’t feeling well. We were visiting family and I felt so sick it was just sad. I took it for three days and had to stop it. I was experiencing severe dryness on my lips and tongue (couldn’t get enough water to drink), arthritic symptoms, muscle stiffness, swallowing problems, and bad anxiety. This Levoxyl was NOTHING like my Levoxyl. I had NONE of these reactions with my last two Levoxyl pills on the two day trip in the car traveling.
This is very difficult to understand.

We are now headed to NC for a few days to visit family. I got a Synthroid prescription filled that I started yesterday. I feel so SICK at this point with aches and pains, have a lump in my throat feeling, burny tongue, dry swallowing again. I’m in such a depressed state and need to be upbeat around family which us hard. I miss the old me from a few months ago, so badly. Unfortunately, nothing has changed. One pill is just as bad as the other and its taking a toll. I don’t know what to do at this point. My familiar Levoxyl medication is not around and I’m at a loss.

August 8, 2013 at 1:36 pm
(488) Bonnie says:

I wanted to mention that the Levoxyl expiration date on the pills in Pa is Sept. 2013.

The Levoxyl pills on my refill bottle from Feb. 2013 expires in 2014. Wonder which formula this is because it has been working for me with no adverse side effects.

Glad to hear good news as well as concerns from others here on the forum. I always read the updates, and sympathize with the struggles over medications.

Glenna, I hope Levoxyl comes back sooner, gives me hope.

For Ed: I also lived near TMI, and worked there for awhile after the accident. Small world.

Will post more thoughts when I get time. Soon at family’s house in NC.

August 8, 2013 at 1:50 pm
(489) Karen G says:

Bonnie:

I was concerned about your finding some left over Levoxyl(so did Ed) on a shelf in any pharmacy. Actually , I believe (leaves room for correction) after recall, they are not supposed to sell it. It could have been expired and was not working.

I know exactly how it is to go on with the day not feeling right. Maybe your family would understand if you did not do every outing planned.
Relax, keep up your nutrition, drink lots of water and rest rest rest. Do you like Cammomile tea? Again very important at this time to follow low glycemic diet and limit or eliminate any sweets/high carbs. Apples are great. I would not doubt that you are still abnormally low thyroid and these are causing many of your symptoms. Just hang in there and let us know how you do. Extra B Vits are also important at this time. Can you see a doctor in PA?

This will pass Bonnie. Keep strong. We are all thinking of you. Keep posting.

August 8, 2013 at 5:35 pm
(490) Karen G says:

Bonnie: OK I see your Levoxyl you just got was not expired. Our messages crossed in the “wires”. Maybe the new pills were the old formula. Again, take care and hope the Synthroid can be tolerated.

August 8, 2013 at 7:05 pm
(491) Kim M says:

Hi everyone. I’ve been looking for the generic levoxyl by Sandoz as I have side effects from Tirosint, but live in the South and can’t find any place that sells it. I’ve tried checking with Costco, Sams, CVS, Target, etc. and they all say they can’t get it because they contract with others. Any suggestions as to where I can get it? Thanks.

August 8, 2013 at 9:16 pm
(492) Karen G says:

Kim:

Costco here in San Diego carries it. I would think that all Costco’s would be the same. I called my local Stater Bros where I got my trial Sandoz and they suggested trying a small independent pharmacy and they might order it. Stater Bros here in my area does not ship out of state. I know CVS and a major grocery chain pharmacy(Vons) here in CA contract with Mylan.

Did you ask Costco if they would order it for you?

Where are you located?

Karen

August 8, 2013 at 9:21 pm
(493) Karen G says:

Kim:

You also might contact the Sandoz manufacture. If you key in Sandoz Levothyroxine you will get their site with an e mail contact . They might be able to give you a pharmacy in your area that carries it.

August 8, 2013 at 11:59 pm
(494) Carol says:

Hi Kim – I got the Sandoz T4 at my Target here in New York. $4 for 30 days and $10 for 90 days. It had to be “special” ordered but there was no problem getting it. The pharmacist didn’t say that he had to stick to a contract with Mylan. Maybe your Target pharmacist could call my Target pharmacist to find out how he was able to order it.

August 9, 2013 at 1:14 am
(495) cabro says:

Karen, No, I’m not on Armour + Levoxyl now. I need more T3 than Armour can provide. I am on Cytomel with the Levoxyl. I’m so glad you are doing so well on Erfa! I hope this time next year I am on it with a lowered Levoxyl base. The Canadian pharmacist and my endo agree. Getting T4 up near the top of the old, out-dated range (around 4) is what will help you feel even better. Unfortunately, you can’t combine synthetic T3 with NDT. Too risky for overdosing. The reference range needs badly to be changed upward, just as the TSH reference range and T4 range continue to be revised downward.

Glenna, I have “run-out” in the evening with Cytomel. It’s a necessary “evil” and I’m willing to put up with it to have better days. I wish my endo would trust a compounding pharmacy enough for me to use timed release T3. I will ask him Tuesday. He will not use them for T4 for cancer patients. We need very accurate dosing and the T4 is just too small to measure it that accurately (he says). I saw the blog about generics and tainted Chinese fillers. Many generics from India are also really bad and are on recall, generic Lipitor, for one.

Bonnie, Your update made me so, so sad. :( I agree with Karen about a low glycemic diet and B vitamins. I hope you can feel better soon.

Kim M, I’m surprised about your Costco. Mine has it in GA. Try their mail order. It says Sandoz on their page. Other good ideas from others here.

Be well, guys!

August 9, 2013 at 3:17 am
(496) Janet says:

Wow what a great website to find!!

Hi, My name’s Janet. Good to “meet” you all :)

I am also a Levoxyl user having a hard time with a replacement. I have been on it for 13 years for hypothyroid and always done well. It’s all I have ever taken – until now.

I will say the Sandoz is ok now – not Levoxyl but ok. At first it was horrible. I had to go back to the Doctor after 4 days on it as my heart rate was 134 bpm. Other than that, I felt good. Lots of energy, clear head finally and I was not so mean to my poor hubby who has been amazing through all of this :)

I personally believe I was so UNDER dosed because of the second Levoxyl (my TSH was 6.85) recall for low amounts of meds that I had to start out on a lower dose. The high TSH was when I had just taken my last Levoxyl. I have not felt right in 8 months or so. Felt depressed, achy lots of joint pain and hair loss and tired. Anybody else notice that? I was ready to see the Doctor and then this recall happened. I can’t believe this!!

The Doctor put me on Synthroid because of that heart rate but it was so horrible for me. I had really bad lower abdominal pain and constipation, didn’t feel like eating at all and I was unbelievablly tired. I kept falling asleep on the couch at 7PM. I was taking .125 same as I was taking of Levoxyl. I stuck it out for 6 weeks and it’s not improving.

I plan to go back to the Sandoz generic levothyroxine tomorrow. Just a little lower dose as i tried that and my heart rate was perfect.

I put a Synthroid pill in a glass of hot water and the next day it was still A PILL. Levoxyl always disolved so fast and so does the Sandoz generic.

Thanks so much and I hope you are all doing well. I feel so bad for everyone because this is so hard.

Hang in there :)

August 9, 2013 at 8:26 am
(497) Ed says:

Good Morning everyone,
Welcome to the “Club” Janet. I’ve learned so much about myself through the experience of all the other posters on this site. Sometimes it can be overwhelming, for example, I miss 1 day of coming here only to find 13 GOOD posts since my last vist. Of course I’ve read them all too. Nice test on dissolving those tablets. I suspected Synthroid contained cement as one of the fillers.

Glenna: Thanks for your comment on T3 and anxiety. Label says Liothyronine Sodium 25 mcg. I thought about cutting the tablet in half. Slow release sounds like the best way to go though. When we are working with 25 mcg of active ingredient, where is it in that much larger pill? Did I just cut all 25 off and take it this morning and then take the other half containing 0 this afternoon?

I’ve often thought about the Generic meds and fillers in all meds. Wondering is it about the equivalent of Chinese drywall powder? (For those who don’t know, China shipped a bunch of drywall and a lot of it sold in the Florida area after one of the hurricanes. A few years in the house the electrical wiring began to corrode from the toxic fumes coming off the cheap drywall. All of it had to be torn out plus replace the wiring.) Sorry a bit off subject but a possibility?

Bonnie: yes you’re right small world.

Well I’m not much help today. Just trying to pay attention to what this added T3 is doing for me. Took it 2 hours ago and a bit anxious. So I’ll be watching that and considering slow release if it helps me feel better.

Thanks to everyone,

August 9, 2013 at 12:45 pm
(498) Amanda says:

I’m not alone! Thought that I was maybe loosing it.

I’m on 100% replacement and have had good results with Levoxyl for the last 10+ years. Tried Synthroid before and I didn’t absorb it well also Armour didn’t work well for me.

I’ve been on a generic Levothyroxine for a couple months now and I’m feeling pretty bad. Feels like I’m having both hyper and hypo symptoms at the same time. I’ve been working really hard trying to loose a little weight with 0 results.

Sounds like maybe a different generic with a little T4 might help??

August 9, 2013 at 1:08 pm
(499) Janet says:

Kim,

Try a local privately owned Pharmacy. The one I go to only carries Sandoz generic levothyroxine. They explained to me that there are different ratings of generics by the FDA and Sandoz is AB rated and the only one they will stock.

That rating was something I had never heard of.

A privately owned Pharmacy will usually carry what you ask for because they have no contracts and they want your business.

I only pay 12.00 for 90 tablets,

Good Luck and take care.

August 9, 2013 at 1:35 pm
(500) pauline says:

Hi all, Just wanted to give you an update. After quitting the Synthroid (replacement for my Levoxyl) and going “cold turkey” for 2 weeks, I picked up a prescription of the Sandoz from my local Costco here in San Diego. Been taking it for 2 weeks now and experiencing the constipation/thinning hair/tiredness. Since my Endo has told me it can take a few weeks to “kick in”, I am going to wait a week or two more before going for my lab work. In the meantime, I will be taking my metamusil to try and keep me regular! I also called the Costco mail order in Washington. I was curious to know if it was the Sandoz that I was taking 3 years ago, because it didn’t work for me THEN and probably won’t for me again, which is why I switched to Levoxl. The pharmacist was able to confirm that it WAS infact Sandoz. So I’ll see how I feel in 2 weeks. He did also mention that if I wanted to specify a particular manufacture, there’s a better chance of getting it from my LOCAL Costco, because the mail order location can switch manufactures at any time.

Good-luck all.

August 9, 2013 at 1:37 pm
(501) Karen G says:

Ed:

I know well the Chinese drywall issue. During the rebuilding boom caused by 9 hurricanes in the Southeast in 2004-5, there was a shortage of drywall and the U. S. imported enough drywall from China to build 60,000 homes.

In 2006 we bought a home in KIngspoint Sun City Ctr Florida(near TPA) and lived there for 6 years. More than 300 homes there had the Chinese drywall. Fortunately our home did not have it, but there were many right around the corner that did. We knew many residents who had severe respiratory symptoms from the three different sulfur gases that were emitted from the dry wall during the hot humid weather. Before our home was deemed safe, I was concerned about the effect on my thyroid, but from what I have read there have been no long term health issues reported as a result of these fumes. And our Association of 86 homes was cleared of any bad dry wall. The authorities probably corrected the issues in time.

From what I have read about TMI, numerous investigations reported no negative radiological effects were found. The studies are on going. Could there have been a cover up?

Many synthetic levothyroxine manufacturers including Synthroid advertize that the synthetic T4 is bio identical to what is made in the human body. This is very far from the truth. I will forward documentation on that later. It is on a Mercola.com Web Site.

Janet: hearing the result of your Synthroid and hot water test, I would surmise that it is very slowly absorbed into the body. That was very interesting information.

Amanda: Curious to know what generic synthetic levothyroxine you are now on. Hopefully information on this Forum will guide you to another choice.

August 9, 2013 at 4:08 pm
(502) glenna says:

You know, I just love this blog, I feel like I have a bunch of new friends who know what I am going through.

Received new labs, TSH up to 5.75 was 3.75 two weeks ago. I know, I know that ain’t nothing compared to some of you kids out there.

Feeling crappy today, back on compounded stuff and it just doesn’t work for me.

Bonnie, sorry you are not feeling well. Perhaps being with your family will be fun and get your mind off of thyroid issues. I enjoyed a lovely day of floating down a lovely Texas river on Tuesday. Cold water definitely helps you forget about your thyroid and feels great when it is 106 outside.

Karen, did I understand correctly that dessicated can be compounded without T3? That might work for me.

Kim, if you haven’t found Sandoz, CVS will order it, if you have those in your area. Welcome to the group. You will find great info hear and plenty of compassion.

Ed – My endo swears by Piney Points t3, he is not crazy about compounded t4, my T3 numbers are perfect on my latest lab, nothing else was, but the T3 is awesome, in the Goldilocks level, just right!
The phone number is 713-782-6212. The cost is about $50 a month, I know that is high, but it works.

My good thoughts and prayers go out to each of you.

Glenna

August 9, 2013 at 4:54 pm
(503) Karen G says:

See articles.Mercola.com “Are Synthetic Thyroid Drugs like Synthroid, Actually Making Your Condition Worse?

August 9, 2013 at 5:05 pm
(504) Karen G says:

Glenna: The dessicated thyroid can be compounded, but I do not know how they could do it without the T3. They compound to eliminate bothersome fillers such as the fillers in Forest Armour. The Erfa Armour thyroid has only mag stearate, cornstrarch, sugar and talc – they are not bothering me at all. I do know that Erfa has a little less T3 and more T4 in their ratio of T4 to T3 compared to Armour by Forest. Would that help you at all? I doubt compounding pharmacies could change that ratio. When you get dessicated powder you get all the 5 hormones in it.

August 9, 2013 at 8:27 pm
(505) Ed says:

Ah-ha, I found the trick to this blog. It is so active, which is a good thing. I need to check in 2x/ day. Good to see lots of activity,but sad that we a forced to resort to this due the levoxyl shutdown.

Well I have some useful information to report. After logging out earlier today I noticed my ears are not ringing, buzzing, singing like mad as usual and not quite as intense or loud today. This same thing occurred last time I was taking levoxyl where the ringing intensity diminished to almost nothing at all. This is a good sign for me. I was anxious for a short few hours after taking the T3 in addition to the Levoxyl. I felt well all day. I plan to cut the tablet in half tomorrow and take in the morning with T4 Levoxyl and the the other half of T3 later in the day to help balance the quick release of the T3. ( slow release may fix this ), thanks to Glenna’s tip from far above, and Thank you for the additional on 509 above, I may well need that. Any tips or tricks whether to take the T3 along with the T4 at the same time in the AM?

Pauline, your comments add what seems to be consensus that synthetic thyroid drugs just aren’t the silver bullet that most Doctors seem to live by.

In my less than God like profession we are encouraged to think outside the box ( as much as I dislike that term ), it does work to do just that and try new ideas. Is it med school training, a crazy litigious society that is driving this type of treatment methods? If so, I sure wish it could change for the better. We make simple things way too complicated than necessary.
See you same channel, different time,
Bye for now

August 10, 2013 at 12:09 am
(506) Karen G says:

To All:

OK Guys and Gals, here is your laugh medicine for the week.

http://www.youtube.com/watch?v=dNs7NLTbEKg

August 10, 2013 at 8:14 pm
(507) ruby says:

Hi Everyone,

I have been off all meds for exactly 1 week. I feel okay a little anxious at times not sure if it is due to not having any thyroid meds or just the stress of me knowing that I don’t have anymore left. Last blood work showed that I was in normal range which a few month ago when I was taking half of my .25mcg. I cut down to .12 then cut down to .6 and then went completly off last week Saturday. I’ve been eating more cranberries since it is suppose to be rich with Iodine. I hope that God will bless us all while we struggle with this situation. Thank you all for posting on here makes me feel like I am not alone.

August 11, 2013 at 6:00 am
(508) Ed says:

Good Morning everyone,

Ruby: I was completely off meds for about 2 months, if I remember correctly. When I say it wasn’t the smartest thing I’ve ever done I say that because of the mental condition it threw me into. I’m trying to remember exactly what happened, but I’m having trouble recalling exact symptoms, they may be posted somewhere above in an earlier post. My point is brain fog set in, couldn’t focus or rembember much if anything. I couldn’t make a decision about simple or major things if it meant saving my life. I was irritated at the smallest most stupid things said or that had happened. I became agitated and upset over those little things that I now don’t really notice or if I do, I don’t think twice about it. There were more symptoms ,I really don’t remember because that was the biggest problem and I don’t keep a journal as I should.
I’ve been back Levoxyl for about 20 days with about 5 days of some T3 (Liothyronine) added as a separated tablet added to the T4 Levoxyl. (I came into the Levoxyl by asking Pharmacist if they had any, they did now I do for about 4 months). So I’ll need to do something fast.
Irritability, agitation has passed, memory, decision making is slower returning. Sure hope I get more of those back. My job depends on both. Been fortunate in that aspect of this whole ordeal of the Levoxyl recall, employer has been very understanding and supportive until I get a handle on this.
Some people say HIPPA, I say BS, I chose to tell them because I wasn’t sure what they were seeing in my performance and action.
So be careful and pay attention to what is going on.

August 11, 2013 at 6:08 am
(509) cabro says:

Ed, The T3 isn’t a quick fix. I had to make adjustments and some trial and error with it over a period of about 2 months. Then my body got used to it and I didn’t have the jitters at the beginning or experience so much run-out before my next dose. I take T4 and T3 when I wake up, then more T3 during the day (sometimes twice!). So, yes, do split your dose. I burn it up really fast (3-1/2 hours). I hope it helps you!

August 11, 2013 at 6:10 am
(510) Ed says:

… My screen refreshed 3 times taking me back to the top of the page but left me continue to finish my post (I was on the keyboard when it did it). I hope it didn’t post 4 times. Sorry if it did.

Karen: from the looks of the water in that pool, those fellas must have been a little dusty. LOL

August 11, 2013 at 6:12 am
(511) cabro says:

Oh, boy. The Costco pharmacy page that used to have levothyroxine now redirects to Synthroid! I think they are experiencing local shortages of Sandoz. Call your store to ask. This is all just insanity!

August 11, 2013 at 6:26 am
(512) Ed says:

Cabro: thank you for the T3 tip. Just started splitting the tablet. I ran out of energy the last two evenings, just couldn’t stay awake around 7:30PM. Had to call it a day really early.
So when you say not a quick fix, I’m assuming you’re saying it takes awhile to get into the system before I would begin to notice its effect on how I would feel? Similar to the lag when beginning T4? Thanks

August 11, 2013 at 8:18 am
(513) Karen G says:

Ed: Is the T3 evenly distributed in your tablet? You had the concern in an earlier post. Glad to hear your Levoxyl is working and your confusion is gone. Due to the short half life of T3, it peaks at 2 hours after taking pill.

Cabro: I do not understand how the Erfa Armour 60 grain tab could work when it delivers 35 mcg of T4 and 8 mcg of T3. For my total dose that I am working up to I will need 105 grain or 1.75 x the 60 grain tablet. Even two grain only delivers total of 70 mcg T4 and 16 mcg of T3.

How could this possibly be enough to get T4 levels up to normal levels I had on Levoxyl? The Levoxyl delivered 175 mcg T4 which converted to T3. According to what I have read 20% of the 175 mcg T4 converts to T3, so does that leave 140 mcg T4 to work in body? At that amount, then the Armour does not deliver anywhere near the amount of T4 that Levoxyl did. Maybe it is supposed to be that way – I have not been able to find more info on that. I would appreciate your input on these questions. Glenna, you mentioned you could not take the T3 in Armour. Is that correct? Would appreciate any input from anyone who has taken the dessicated.

Good idea Ed to contact the reps in Congress. We should all do this.
Hope you got a laugh from the Pool Party. Have a good Sunday.

August 11, 2013 at 8:57 am
(514) Kim M says:

Hi everyone. I’m sorry that I’m only on here sporadically. Like a lot of people, my schedule is very hectic and it’s hard to get the time to get back. And now it’s worse with how tired I am all the time.

Thank you all very much for your suggestions. I will try an independent pharmacy. The CVS here said that they “might” be able to get a special order of one specific dose by Sandoz but no guarantees. Everyone else, Target, Sams, Costco, was very clear about saying no, stating that they contract with Mylan. But, I will try the suggestion of asking Target to special order. Maybe the person I spoke with didn’t thing to mention it? I know that I didn’t think to ask (it was before CVS said they might be able to special order one specific dose).

I will say that when I spoke with the pharmacist at Costco, I mentioned my issues with generics and she did say I might want to get it compounded. But, I don’t even know where to begin with something like that. So, I’m hoping that some place can special order it.

Thanks again everyone for being here and helping out!

August 11, 2013 at 10:22 am
(515) Karen G says:

Kim:

Please check out http://www.ecompoundingpharmacy.com when you need to find a compounding pharmacy in your area.

August 12, 2013 at 12:23 am
(516) cabro says:

Ed,

What a great idea to stop in on your reps!

Actually, what I mean about Cytomel taking time to get used to is different from the way T4 works. Your body has to get used to getting something it has needed so badly for so long and now is suddenly getting. For me, it had two phases – one where I used to get jittery and have some palpitations on the front end of the dose. Then when it ran out, I crashed big-time. In the second phase now, my body is chugging along better and the highs and lows are not as bad. I still wake up reeeeeally low in T3, and I have to crawl out from under that weight. It’s like I have been dragged behind a truck for miles. It takes a good 45 minutes for my dose to kick in, but it isn’t a big jump anymore. Besides, I can’t eat for that long because of T4 dosing, so I just wait it out and push myself around the house. I know I will feel better. Also, now I can recognize the run-out sooner and head it off. I look at the clock and if it has been 3-1/2 hours or more, I say, “Yep. It’s time for a new dose.” As I said, I really burn through it fast.Since my endo follows me with labs for T3, too, he encouraged me recently to take a half dose late in the afternoon, since I am already a night owl. It helps get me past the 8:30 PM crash. I can’t possibly go to bed that early or I wake up at midnight and am awake all night.

continued

August 12, 2013 at 12:24 am
(517) cabro says:

(continued)

Some people can set an alarm and wake up in the middle of the night for a T3 dose and go back to sleep. The idea is to keep the conversion going and prevent that “dragged behind the truck” feeling. I’m still recovering from having no sleep for 3 years with thyroid cancer management (TSH .00something) and I am not willing to take a chance that I won’t go back to sleep. Maybe somewhere down the road……

Give yourself time to work through the ups and downs. They will smooth out some. If I could lower my T4, I might begin to clear out more rT3, but I am stuck on my dose of 100mcg with my Levoxyl stash. I’ve gained weight so that means the same dose is actually less. Also, some of this stuff may age out and have less potency. Thankfully, my endo tests me often. Time will tell.

August 12, 2013 at 12:58 am
(518) cabro says:

Oh, dear. In (502) I meant to say getting your T3 up near 4…., NOT your T4!!!!

August 12, 2013 at 1:07 am
(519) cabro says:

Karen, Not sure where I misspoke and misled you about your Erfa T4. No, one grain could not possibly be enough for you if you were on 175 Levoxyl. I apologize for saying something that wasn’t even in the ballpark. Clearly you know your Erfa equivalents for T4 (35) and T3 (8), so I hope you are already titrating up successfully to find your optimal dose.

Yes, when you add T3, you must lower your T4, or you will drive your TSH into the ground. Lowering T4 “makes room” for the T3..

Ed, this may be a factor for you, too. Have you lowered your T4 dose to allow for the addition of T3?

August 12, 2013 at 5:23 am
(520) Karen G says:

Cabro:

I am sorry that my question was misleading.

You never misled me or gave me information that the 60 grain was enough. My doctor told me to start with the 60 grain for 4 weeks and then up it from there, 15 grains at a time. I knew you had experience with Armour and I wanted to clear up my confusion over what I think is a huge difference in what the Levoxly delivered and what my new Armour total dose of 105 grain would deliver.

The Levoxyl delivered 175 mcg T4 , 20% of that converted to T3 in the body. That would leave 140 mcg T4 in body.

The final dose of Armour of 105 grain would deliver 45 mcg T4/14 mcg T3. This seems to me to be quite a bit short of what the Levoxyl delivered to keep my T4 and T3 values in lab work normal. The only thing I can come up with is that the Armour, being natural, is much more potent.

Or…maybe I ultimately need more like 4 grains of Armour. That would deliver 140 mcg T4.

I do find that I have an increasing heart rate with dose higher than 60 grain. Did you find that you felt better on the Armour when you took it?

I just wish I had my Levoxyl, like many of us I am sure. I know I need a better doctor. The one who prescribed the Armour is not as knowledgeable as I would like, and…she is constantly “on vacation”.

I hope that better expresses my concern. Thamk you so much for all your info.

Karen

August 12, 2013 at 5:46 am
(521) Ed says:

cabro: Thanks for the additional information for T3.
Good stuff you said there. I’ll pay attention for the run out, and be ready for the other half tablet.
Thank you

August 12, 2013 at 10:47 am
(522) richard g says:

It’s disturbing that there seem to be comflicing explanations as to why it’s been pulled; there are several versions of the story. Having been in the business of survival now since ’94, I can’t avoid the cynical assumption that it has something to do with manipulating the market at the expense of people’s health. Anyway, I’ve been on Armour for the last two years and my overall wellness has taken quantum leaps forward from the synthetic days. I’m hoping the industry’s efforts to squash Armour will not lead to its being difficult to get as well.

August 12, 2013 at 2:55 pm
(523) Karen G says:

Yes it is confusing about what Levoxyl people tell us. It has to be a marketing ploy. If you go to their Web Site, they apologize for the recall and yet say it is perfectly OK to continue on what ever supply you had BEFORE the recall. The pills are still safe.

They seemed to feel that it was “better safe than sorry” to take it off the shelves. With millions of people in the world taking this
medication,did they ever consider the impact of taking the med away from these people and the damage THAT could cause?

Of course not. Bad management.

I too hope that Armour is not harmed by Big Pharma . I have been on it for only 2+ weeks. I get my Armour from Canada-I fear the FDA one day or Big Government may also get in the way of our getting medicines from out of the country.

Nice to get your comments Richard, hope you have more to share. Welcome to the forum.

August 13, 2013 at 3:44 am
(524) cabro says:

Karen, Sorry I was a bit dim and didn’t pick up on your approach to the issue of only one grain. When I switched to Armour, I believe it was 2007. I was newly diagnosed in 2006 and had only had levo. Levo wasn’t doing anything for me, and I knew about Armour from another forum and asked for it. My Hashi’s didn’t get bad until 2009, so I had almost 2 good years with Armour before the reformulation. But 2007 is ancient history and I don’t really remember how I felt when I switched. But what I do know now is that I would LOVE to return to how I felt that year, except of course for the Meniere’s. :-/ I think I may have been up to 2-1/2 grains at one point but that could be a false memory. My body was so out of whack by 2009, it is probably a blessing that I was suppressed (low TSH) for a while. I finally had the thyroidectomy (TT) in 2010 and the cancer was an incidental finding. My old endo had me on it, and the new (current) endo let me stay on it with a base (50mcg) of T4. I trimmed down on that and hope to go back to it someday.

August 13, 2013 at 8:59 pm
(525) cabro says:

Karen, I fully agree that you should supplement with T4 since you clearly need it. As you know, I was on 50 T4/60 Armour) post-RAI. It worked while we figured out I needed more T3. If your thyroid is in bad shape, then you must not be getting enough T4 from the Erfa, for now. Typically with me, the T4 takes a week to respond in my system. It is reliably measurable for me within 14-16 days. My endo has even tested my fT4 at 1 week just to make sure we were heading in the right direction. It’s interesting that you get heart palps from adding a half grain PM. I’m extremely sensitive, too, and have to pay attention when doses change. Right now my T4 is too high. I’ve been on what amounts to 103mcg Levoxyl and my fT4 is 1.63. Much too high. I have some 125mcg tablets leftover and never thought I would get to use them. Welllll…..I am going to go on a 5 day regimen with 100mcg for 4 days and half of a 125 tablet (62.5) on the 5th day, with a resulting overall dose of 92. My endo was leaning toward a 4-day regimen but decided it will be easier to start with 5 first, since I am so senstive. I’m just flabbergasted that my T4 is that high on Levoxyl. I was on 106 last fall and doing well. I guess I am absorbing it better. It is like gold to me, so I am dutifully drinking a whole glass of water with it and waiting an hour to eat. The point is that you may very well be absorbing the Erfa super well.

continued

August 13, 2013 at 9:00 pm
(526) cabro says:

(part 2, continued)

Good news about Erfa for me – the endo today said he will be fine with my getting Canadian Erfa if/when we need to switch. But the bad news is he intimated that Levoxyl might not be coming back. I don’t know what he might know, but he is very well connected in the medical community. I was in shock so I didn’t challenge him. I will ask next month. Whenever my T4 tops out like this, he keeps a close eye on me. Apparently, the decision will be made in early 2014 about whether Pfizer will make Levoxyl again. If that is so, we need to ramp up our pleas to Pfizer this fall and probably get Facebook involved, everyone we can find!

August 13, 2013 at 9:16 pm
(527) cabro says:

Today I took my endo a list of T4 formulations, generic and brand, broken down by manufacturer with a list of the inactive ingredients for each. He was a bit startled to see the Mylan list. “Butylated hydroxyanisole,” the first ingredient (a toxin), did not go over well with him at all, and he pointed out that povidone is the topical form of iodine – in a pill, which I knew. Povidone is also found in Synthroid. What he really noticed in the Synthroid list was the acacia. He said, “that plant is known to cause reactions, even blistering (similar to poison ivy), when it comes in contact with skin.” I consider him to be very savvy, but he probably hasn’t thought about the inactive ingredients for a while. He had brought up the Mylan for the future for me, when I handed him the list with the Mylan cleverly placed at the top. It’s not likely to be in my future.

When he looked at the Levoxyl inactive ingredients, he said Levoxyl basically has little to nothing else, especially by comparision. He said that those two other ingredients which popped up on a recent search here, calcium sulfate dihydrate and sodium bicarbonate, are simple salts and are found in our drinking water. That’s why they don’t appear on the main listing for King/Pfizer.

I’m very excited to get to lower my dose, after years of suppression for cancer. I am definitely feeling better off Tirosint and Synthroid, and the idea of a lower dose is exciting because I am likely to feel a little better! Dare I hope?? You bet! It’s about time.

Then we start all over in January or February if Pfizer decides not to bring it back. Sigh.

August 13, 2013 at 9:54 pm
(528) Ed says:

Hello everyone,
cabro: I did a little experiment with the T3, I left it run out which occurred around 3:30PM. So I took the othe half of the 25 mcg tab and came back to life in about 30-40 min. Today I was able to head off the crash by taking the other half about 11AM. I felt a little low around 3:30-5:00 but nothing like the day before. So tomorrow I will move out taking the other half around 1PM and see what that does for me.
T3 has helped me feel better than just T4 Levoxyl, I hope the labs say so too.

Karen: Keep up the good thoughts that you’ll be fine with the Erfa. We’re with you all the way.

Welcome richard, it doesn’t take much to bring the cynic out in me, especially because of the way they pulled it, stopped production, but patients go ahead and keep buying what is left on the shelf, then keep taking it until its all gone, good luck. We will be back in June 2014. Which is about 14 months after the date of cut off April 2013. Everyone will then need a new script for the new, better, reformulated version of Levoxyl. Microsoft provides better customer relations with obsoleting Windows XP for computers announcing 2 years ahead,much more than Pfizer gave us for our personal health. I’d call what Pfizer did a Zero Day Attack, we found out too late and we are talking our health here, not computers. Who values what most? I don’t trust them at all! Sorry for the negativity, I hope they prove me wrong. But doesn’t look good. Pfizer call me. I’ll be waiting.

August 13, 2013 at 11:10 pm
(529) Karen G says:

Cabro:

Butylated hydroxyanisol is on the State of CA Prop 65 list of cancerous toxins. The reason the manufacture does not have to label it as a dangerous toxin on the bottle is that it is considered within safe limits of consumption. To qualify for that, the amount in Mylan may only cause cancer in one out of 100,000 consumers.

Magnesium stearate is also on this list. As well as calcium stearate, which is a triple whammer in that it causes THREE different cancers.
The State of CA puts the LEGAL responsibility of warning consumers of these toxins in the hands of the prescribing doctor. I think most of us know by now that both magnesium and calcium stearate are used to coat the pills to make them go through the machine faster. All to increase the profit factors. Many health conscious and responsible manufacturers of vitamins have already removed mag stearate from their pills. Costs more money to produce their product and some prices have increased, but they are sincerely interested in the welfare of the consumer.

If you have not already done this, I strongly recommend signing up for Mary Shomon’s newsletters on her main page above the Forum. I received a very interesting e mail from her today which I will notate on the next message.

August 13, 2013 at 11:32 pm
(530) Karen G says:

This has valuable information about Floride:

www/thyroid.about.com//cs/toxicchemicalsan/a/floride.htm?nl=1.

The message I got today from Mary Shomen is

“About Thyroid Disease: Some Thyroid Drugs Unavailable/Mold/Lyme
by Mary Shomon.

August 14, 2013 at 5:58 am
(531) cabro says:
August 14, 2013 at 6:02 am
(532) cabro says:

Ed, It sounds like you are working with it to learn how it works for you. Good job. It takes some time for your body to acclimate having something it has needed for so long. Kind of like an old propeller plane starting up. :-) I still hope someday to be willing to risk a middle of the night dose!

August 14, 2013 at 9:02 am
(533) Karen G says:

Cabro:

My link I posted did not work. I am afraid to read that link you just posted…the 50 mcg I added for the past 2 days was Synthroid. Gosh, I don’t know how anyone can tolerate that med. I woke up this morning feeling awful. I can just imagine what that acacia is doing inside the body. You are so fortunate to have a good endo.

No more even small dose of Synthroid for me! They should take Mylan and Synthroid off the market and reformulate it. I am not worried about Levoxyl, it WILL come back, but maybe under a different manufacturer.

Did you have to type out by hand the link you just posted or is there a way it can be put on this post without all that work? I will read it now.
I have my piece of dark choc in my hand for security…

I just got a refill on the compounded with microcrystalline cellulose. Hopefully the T4 in it is evenly distributed. I will try to take a quarter dose of it to see if it works. I doubt 25% of the filler will bother me. There is 125 mg in each compounded capsule. I told myself that if push came to shove I could go back on the compounded with Avicel to survive. I try to keep a positive outlook and I do feel when fine tuned the Erfa will work just fine. I know I must not skip a day without the T4, synthetic or dessicated.

I get about one e mail a week from About.com’s Mary Shomon. There is a group of thyroid patients/advocates per Walstreet Journal pushing for reforming the thryoid supplement options. I think we are going to see more of this issue in the news. Oprah W takes thyroid, wonder how she is doing.

August 14, 2013 at 2:24 pm
(534) lauralee says:

Hello All
I have been watching and reading for months and have learned so much, thank you all. however now I’m at the end of my rope.
I went from levoxal to Synthroid to Natural now on Tirosint all in 4 months !!!! I take 200mcg I have hosimotoes and was told 6 years ago my antibodies completely ate my thyroid !!
My doc has me taking 100 mcg in am and 100 mcg afternoon. I cant do it I get dizzy and so tired. I have a very physically demanding job. I don’t get the idea of spilting up my dose never have before.
any reason I cannot take 2 100 mcgs in am ???
tring to fiqure out if having side affects of dosing twice a day not right thing to do.
anyonelse on tirosint ?
I fear all the switching has made things worse.

August 14, 2013 at 5:50 pm
(535) Karen G says:

Hi Lauralee:

If you are at the end of the rope it is proper time to get on this Forum. This is a group of very caring people who will place a “net” for you at the end of that rope! I too have learned a lot from this forum.

Don’t feel badly about trying 4 different thyroid meds in 4 months. Many others, including myself, have tried as many or more. That is the only way you will know what you can tolerate. I gave Mylan only 5 days before I quit that one. It was terrible. Just please be careful and not go without any T4 at all without doctor’s supervision. . Hypothyroidism creeps up quickly

My personal feeling is that your question about taking 2 doses in the morning should go to a doctor, either the one who prescribed the Tirosint, or a new one for a second opinion.

I would be curious to know what dose of Levoxyl you were taking before it was recalled.

Hope you have more to share!

August 14, 2013 at 8:22 pm
(536) Karen G says:

I did not get to finish that last post.

Lauralee, there are many on this forum who have had experience with Tirosint who might be able to answer your questions about it.

August 14, 2013 at 9:59 pm
(537) glenna says:

Hi everyone,

Well, my compounded just isn’t working for me. I ache, have gained weight, am tired and sluggish. My cortisol is high, too.

Karen, are you going back to the compounded from Womens International?

My endo wants me to try the Tirosint again, but honestly I am afraid of it.

Is anyone having success with Sandoz? Might try a lower dose of that as the 62.5 caused BP issues.

August 14, 2013 at 10:26 pm
(538) Ed says:

cabro: I was up a little early today, I took the T4 alone without the T3. Started to get a bit anxious, took the T3 half tab and then began to settle down. I then took the other half tab of T3 after lunch around 1PM. It delayed the run out feeling until about 5:30 or 6PM.
Do you run out? Or are you pretty good all day when you split the T3 dose? Did I understand you correctly that sometimes you take half tabs 3 times a day?
Just trying to figure out my next move.
Or do you think I am expecting to much to fast? I didn’t get this way overnight, I suppose it won’t reverse overnight either. Although I do feel pretty good when I’m at the top of the dose. Feeling good decays to feeling OK after a few hours, then the run out feeling sets in. That seems to be about the same amount of time between T3 doses, just occurs at different times of the day, depending on when I take the second dose. Any thoughts or tips?

I’m was considering Saliva testing throughout the day to see where the Adrenals are relative to my circadian clock and cortisol levels. But I’m wondering if the Cortisol release times by the Adrenals may not be a
factor because I’ve moved my run out time by shifting 2nd dose times a few hours in either direction of the day.

I like feeling pretty good for a change therefore may be having trouble being patient waiting to stumble onto a resolution with this energy sapping condition.

Have a good day,

Thanks,

Ed

August 15, 2013 at 12:21 am
(539) kat says:

Hi everyone…I am so glad that I found this site and all the support. I have one month supply left of the levoxyl…thanks to my Doctor who gave me all of his samples. I went through this”merry-go-round” right after my thyroid surgery many years ago. Could not take the Synthroid and only the levoxyl has worked. My health issues are compounded by diabetes, high blood pressure and cervical cancer that is currently in remission. My dad just passed in February, and I cannot believe this levoxy recall. I was with you Bonnie on the Everything Changes Blog.” Contacted CEO at Pfizer..Mr Ian Reids office and got a polite but no help from ” a woman named “patchey” who reiterated levoxyl will not be available until next May. I got the most positive results (unbelievable)from tthe FDA—-phone number is 1-855- 543-3784. It will appear as “private” but again was told it was up to Pfizer. I am tired and will give you more information tomorrow. If we all stick together with our Senators, Representatives and especially the media something has to get them (pfizer) legally motivated. Again, so happy to have found all of you. Will say extra prayers for everyone and for a miracle in our fight against the “giant” Corporate Monster…Pfizer.

August 15, 2013 at 1:08 am
(540) Karen G says:

Glenna: I tried the compounded T4 with olive oil as a filler by Womens Intl Pharmacy for almost a month. Olive oil is a potent anti inflammatory and I had vestibular symptoms for about 4-6 hours after taking the pill due to previous inner ear damage. The T4 delivery was fine however. They have a choice of other oils including peanut oil, canola, apricot, and many others which I did not even consider. They are all anti inflammatories. I could even send to THEM an oil of my choice . As far as I know they only use the oil fillers.

I read I believe on one of About.com sites that the adrenal function must be corrected in order to get a good response from most thyroid supplements. With a high cortisol, it sounds like you might have adrenal fatigue. Did your doctor or pharmacist suggest this? Did they ever recommend trying another filler, like Avicell or vit C powder?
There is a compounding pharmacy in Milwaukee Wisc that has many different fillers to offer, even brown rice flower. I mentioned them in one of my posts above. There are so many posts now, I will look it up in my research notes and get it to you tomorrow.

I had the saliva tests a couple of years ago and I had a very high night cortisol. I was treated with Vit C and Vit B-5, 500 mg of each three times a day, which together stimulated the adrenals and cortisol level normalized within 8 months .

August 15, 2013 at 3:40 am
(541) cabro says:

Ed, I think you need to keep tinkering with your dose, as needed, every 5-7 days to see what works for you. If you change too often you’ll never figure it out. If a plan is bad, though, ditch it and go back. I do think you may need to be a little more patient. It took me two months and ending up with a free T3 level that was over the top to learn my parameters and get settled into the Cytomel thing. Unfortunately, I take generic, because the brand is much too expensive for me. That means fillers and 5mcg tablets, but my body is coping. I might not get the maximum absorption because of the fillers, but yes, I am adjusting to that with a third dose on some days. Not all, though. If I take 12.5 every day, I end up with a fT3 too high. On 10mcg it is 3.8, which gives me just enough room to add half of a 5mcg tab a few days a week. As I said, I tend to burn it up pretty fast, so I watch the clock to avoid total run-out during the day. I find that I am unable to recover from a mid-day run-out. I’m glad you are working through the split dosing. It’s the only way to have T3 work, IMHO. Keep the faith!

August 15, 2013 at 3:44 am
(542) cabro says:

Hi, lauralee,

I’m sorry you are having a hard time. 200mcg of Tirosint is a very high dose. Since it has no fillers, there is no “buffering.” Perhaps that is why your doctor is splitting your dose.I have never heard of splitting a T4 dose, but I’m guessing that eventually you would be allowed to take it all in the morning. Let us know how your levels turn out after 4 weeks on it. I hope this one works for you.

August 15, 2013 at 3:57 am
(543) cabro says:

Karen,

I would agree with you about Synthroid and Mylan. Trash. I hope I re-opened my doctor’s eyes. He’s so very sharp and kind, and I am so blessed that he is my doctor. I honestly don’t know if I would even be living independently still if I hadn’t found him. And now with the Levoxyl mess, to be able to feel like I have options with his ideas and his acceptance of things like Armour and Canadian Erfa is so empowering. He says my poor conversion is hereditary. Makes sense to me, since my sister (Graves and TT) has now been put on Cytomel, too. One of my nieces is doing the Wilson Disease protocol with compounded time-release T3. She’s about a year into it and still going strong. My other niece is hypo but is not yet able to put up consistent enough numbers to get a supplement. She sees a wonderful chiropractor who is helping her with Chinese medicine and reflexology.

Thanks for your encouraging words that Levoxyl will come back – from someone. Perhaps that combo of ingredients is proprietary, but it sure works for thousands of people. Pfizer would be foolish to dump it. When my endo intimated it might not come back, I had that horrible constricting feeling in the lower throat/upper chest – panic and anxiety. Thanks for calming the waters for me.

August 15, 2013 at 3:59 am
(544) cabro says:

kat – Thanks for posting and for the valuable info. I think we do have to start making noise. I’m not willing to be on TV, but I am willing to call and write. Let us know more when you are able.

August 15, 2013 at 4:11 am
(545) cabro says:

Karen, I don’t know what my saliva test will show. My ‘morning’ serum cortisol was 15.8 (ref range 2.5-19.4). When I did the late night saliva sample, I was wiped out, so it probably means the cortisol had tanked like it is supposed to. So, I probably have a really bad Circadian rhythm issue for the sleep neurologist and me to try again to fix.

I really do hope and pray the compounded with microcrystalline cellulose will work for you.

August 15, 2013 at 12:00 pm
(546) Bonnie says:

Hi everyone,

We got back from our trip up north early this week.
I had been checking this blog periodically though to catch up on who is doing what with medication.

Kat, I was thinking about you yesterday and was wondering if you started the Sandoz med. yet and I was going to tell you that I received a phone call on my way home (from our trip) from a woman with Pfizer medical information about Levoxyl. This woman assured me Levoxyl would be back mid 2014. I asked her some general questions and she seemed pretty helpful. I let her know how sick I feel everyday being on other medications that are not compatible with my body. I assume the messages I left at the Pfizer CEO office and voicemail prompted the call and I was glad someone got back to me. I periodically call 1-800-438-1985 -option 2, then option 6, which is their pharmacy at Pfizer. I was told to start checking in January 2014 with Levoxyl returning. Everyone should call the Consumer help line 1-800-338-0808 at 8 on your side (NBC news channel 8) letting them know how much Levoxyl is needed before 2014. I got a call back from them awhile back to see how they could help, but more people calling may make a difference. I’m struggling every day without the Levoxyl I was taking before the recall.

August 15, 2013 at 12:54 pm
(547) Carla2013 says:

Hi everyone. I haven’t posted lately but wanted to give everyone an update on how the Sandoz generic is working for me. It’s been a little over a month since I started taking Sandoz, and so far it’s not as good as Levoxyl but much better than Synthroid or Mylan.. Mostly I notice I don’t have as much energy, not as upbeat and don’t feel as well as I do on Levoxyl. Thankfully I don’t have any really horrid side effects. Until Levoxyl is available again I think I can manage with Sandoz.

Of course, I do not have any other health problems, just low thyroid. So many on this site have had their thyroid removed and/or have additional serious health problems, I can hardly imagine the challenge this must be for them.

Thanks to everyone for posting! It helps sooooo much.

August 15, 2013 at 1:35 pm
(548) pauline says:

Hi everyone, I too wanted to give an update on the Sandoz. Just got my lab results after being on Sandoz for 3 weeks, and my TSH level is at 2.22. It is up from 1.79 from 6 weeks ago when I was forced to try the Synthroid again (never again!) I’m feeling low-energy, gaining some weight, constipation etc etc.. but I don’t have any other options at this point, until levoxyl comes back.

August 15, 2013 at 2:50 pm
(549) Bonnie says:

I was wanting to share that the Synthroid I took up north was a last resort. I was depending on the Levoxyl I had purchased up north to be my miracle cure, but as I mentioned in my one post, the pills were not the same (or I wouldn’t have had the bad reactions I had). Could have been the older formula, I don’t know. I could only compare with my two Levoxyl pills from my refill bottle, feeling Good for two days, then the third day I started the new ones and I can’t tell you how different they were (I was shocked). I haven’t been looking for any leftover Levoxyl in pharmacies since I can’t take these, and if I survive till Levoxyl comes back, I can only pray it’s the same formula I was taking before the recall.

The anxiety attacks and reactions from these medications have been so HARD on this trip around family. I found myself walking off periodically to cry from feeling so badly with aches and pains. I took walks with family members and felt like my circulation was being cut off, my legs were so tight from the medication. I couldn’t wait for the medication to wear down for some relief. The dose of Synthroid is too strong and I’m so allergic anyway. I hate being forced to take any of this crap! I decided once we arrived at my daughter’s house with the grandchildren, I was only going to take a small amt. of the medication every other day. I was still jittery even on a sliver if a pill. The day I didn’t take it I was calmer. I lost 2 more lbs. (weighing 98, was 112 in May), 14 lb. loss. I’m eating, but nothing is metabolizing correctly, so I loose wt. Had this problem when I was diagnosed with hypothroidism few yrs. back, but I was fixed with a few yrs. on Levoxyl, put on wt. and felt good.

I’ll continue in another reply.

August 15, 2013 at 3:31 pm
(550) Bonnie says:

Continued from last reply..

I’m still taking part of a pill one day then nothing the next (can’t stand the side effects anymore).

Speaking of Sandoz, tomorrow, for the 3rd time I’m going to try this again. I think the dose is too strong for the reactions I had before, but I need a break from Synthroid.

I’m sure I will be back to see the endocrinologist next week, and I’m not thrilled about it. They put me on Armour to try and I told them I had so much anxiety and other negative reactions. I was to make an appt. before our trip, but we were too busy. They always recommend Tirosint, but I’m not doing that again. Burning eyes, burning tongue and super tight muscles, I don’t think so. Not for me.

I was hoping the compound would have worked in my favor, but it reminded me of Tirosent with similar symptoms. Don’t know if I’ll try that again.

Maybe I can get the Sandoz in a lower dose, we’ll see.

I’m glad to hear reports from others with their medications and how it’s working.

Dispite everything, I am glad we visited family. Our granddaughters are growing up so fast. I only wished I would have felt better. Hopefully next time I will and can put this all behind me.

August 15, 2013 at 8:23 pm
(551) Ed says:

cabro: Thanks for the additional details above. I’ll stop jumping around so much. I found that taking the second half of the 25 mcg T3 tablet (12.5) 5 hours after the first dose of the day seems to work pretty well for me. No run out today, so I ‘ll stick with that until blood work in about 2.5 weeks. I hope it doesn’t blow the ft3 sky high because I don’t feel too bad so far. If I start to feel rough I’ll back down the T3.

I called my US Rep. , no office hours planned as of yet during their 5 week hiatus from DC. I’m on a call list to make appt for sit down with him if and when office hours are planned. I’ll keep everyone posted how that goes.

Bonnie and kat: I’m tempted to call the News 8 number above even though I may not be a local for them. This is crazy stuff we are going through, the word needs to get out soon. I’m on the fence about whether to call until I talk to the US Rep. If I don’t see him I’ll make the News 8 call for sure.

Oh here’s a good one for ya. I was told by a Union member today that they were given a free several thousand dollar life insurance policy just for being a Union member. I wonder if their thinking was that the members are getting lousy health care we might as well help them get to the next life. lol

August 15, 2013 at 9:00 pm
(552) Karen says:

Glenna:

Telephone Number for Compounding Pharmacy in Wisconsin is:

266-373-1050

August 15, 2013 at 9:43 pm
(553) cabro says:

Karen,

I have tried twice to post the ingredients list, but neither one came through. So I will start a series of posts. First will be Sandoz and Mylan. Second will be Synthroid and Levoxyl. Third will be Armour (US) and Erfa (Armour Canadian).

August 15, 2013 at 9:45 pm
(554) cabro says:

Inactive ingredients

Mylan levothyroxine: butylated hydroxyanisole, colloidal silicon dioxide, crospovidone, magnesium stearate, mannitol, microcrystalline cellulose, povidone, sodium lauryl sulfate and sucrose.

Sandoz levothyroxine: Magnesium Stearate; Microcrystalline Cellulose; Colloidal Silicone Dioxide; Sodium Starch Glycolate

August 15, 2013 at 9:47 pm
(555) cabro says:

Inactive ingredients (brand)

Levoxyl (Cardinal Health and Physicians Total Care –distr.): monocyrstalline cellulose, croscarmellose sodium, magnesium stearate

– Also Levoxyl (King): Microcrystalline cellulose, croscarmellose sodium, magnesium stearate, calcium sulfate dihydrate and sodium bicarbonate

Synthroid: Acacia, confectioner’s sugar (contains corn starch), lactose monohydrate, magnesium stearate, povidone, talc

August 15, 2013 at 9:48 pm
(556) cabro says:

Inactive ingredients (Armour)

Erfa Armour: mag stearate, cornstrarch, sugar and talc

Armour (Forrest, USA): calcium stearate, dextrose, microcrystalline cellulose, sodium starch glycolate and opadry white

August 15, 2013 at 9:55 pm
(557) cabro says:

That’s funny, Ed!!! You have to laugh at these outrages.

I think your plan sounds good, and it sounds like you are making progress. Slow and steady wins the race, as the old story goes. Not having run-out is fabulous. I hope your T4 isn’t too high. I would be worried about that, too. Mine is too high on 100mcg T4 and 10-12mcg T3 and I’m about 20 lbs. overweight (I’m not a petite little thing like I was 40 yrs ago). So we have had to reduce my T4 by 10%. I think my body is running mainly on the T3 I take.

Here’s to feeling better!!

August 15, 2013 at 10:54 pm
(558) Karen says:

Yes, Ed we enjoy your sense of humor. Keep posting! I have sent an e mail to orreily @foxnews.com
regarding issue, we will see what comes of that. The San Diego Union has posted two Letters to the Editor from me regarding the issue.

Cabro: That is just GREAT! That gives an excellent summary of what the options are to Levoxyl as well as the inactive ingredients. I have been thinking of doing a summary of the most important information and that tops the list!! Thank you thank you . We have so many new people posting and I am sure many will not take the time to go back to read all of the forum. Can you think of any other important things to post again? I will help…

I am eliminating the “G” on my name…just to save time in posting.

August 16, 2013 at 5:26 am
(559) Lucien Berardo says:

My wife also tried Tirosint Brand synthetic levothyroxine in May, but the price skyrocketed since then from $42.00 per month to almost $90 for the 150 mcg 28 day pack.
Our insurance did not cover it. We went to Erfa Armour thyroid and she is doing very well on that . Cost is $49.95 for 100 tabs plus $10 shipping from Canada and IS covered by our insurance.

Inactive ingredients in Tirosint are geletin, glycerin and water. She also did very well on that for a month and we got the first 30 days at no charge . From what others have posted about tirosint, we are glad she is now on Erfa. She could not tolerate the Synthroid and Mylan AND Sandoz.

Ed: that was funny!
I agree it is time to take some political action. Did you see your endo yet?

I read the posts about every other day.

Hope all is well,

Regards,

Lou

August 16, 2013 at 7:02 am
(560) cabro says:

I posted above (539) re: trying to tie T4 to lung cancer. Apparently, it doesn’t fly. Here is the other side of the coin: http://thyroid.about.com/b/2013/08/14/italian-study-says-thyroid-drug-may-increase-the-risk-for-lung-cancer-does-it.htm#comment-540278

August 16, 2013 at 4:26 pm
(561) Bonnie says:

Glenna: when you take 62.5 mcg. Of thyroid medication, do you take half of a 125 mcg. tablet? I was wondering what you did since I take the same dose at 62.5 mcg. I realize the compound is made up with the dose needed.

I started back on the Sandoz today and took a quarter of the 125mcg pill to start and it seems really strong.

If i can tolerate it, i may need a lower dose. )

Synthroid was really strong taking half of 125 mcg tab and the past few days I barely took any if it (bad side effects).

I didn’t have problems with Levoxyl at this dose and a half pill worked fine (I easily put on wt. which was a good thing).

All these other medications seem strong to me, and loosing 14 lbs. makes it more noticeable (possibility).

Many times I find myself reading over all the posts from beginning to end. I’m so sympathetic to everyone having to go through these medication changes (so hard).

Thanks for sharing everyone.

August 16, 2013 at 4:35 pm
(562) Karen says:

Cabro and Everyone:

After reading your post 535, Cabro, about what your doctor told you about acacia I found this Web Site information about Synthroid and acacia:

http://thyroid.about.com/od/synthroid/a/acacia-lactose.htm

MORE reason why I should not take it! Did your doctor mention by chance any long term health issues/dangers in taking the acacia?

Very interesting information on the lung cancer connection possibility with synthetic levothyroxine. Thanks for sharing.

August 16, 2013 at 6:40 pm
(563) Karen says:

Bonnie:

Sandoz is published to be more potent than the other synthetic T4′s.
Same situation withTirosint.

If you look at post 570 you will see why you might have had the bad side effects in Synthroid. If you have seasonal allergies you may react unfavorably to the acacia. I certainly did. However, the T4 delivery was excellent in Synthroid, and once I got up in the morning, got the congestion cleared, with aspirin, garlic, extra Vit C, I did OK. Bad price to pay to get the thyroid hormone. I am now on Erfa Armour and after 2 weeks I was not getting enough T4 on the 60 grain prescribed and(after using Synthroid I had in the house) I got some compounded T4 to add to the Erfa until it is safe to up the dose of Erfa. The shock of getting direct T3(not from conversion) can be very hard on the heart, especially if you have a history of heart disease or are not a “kiddo”.

I just hope you can find a supplement you can stick with to get your thyroid levels normal again. You might have to select one that has the least bad effects and I know that is hard, but some of us might have to “bite the bullet” and accept some less desired side effects at least temporarily, just to get the T4.

Levoxyl has well published the fact that it is OK to take the Levoxyl we had in our possession before the recall, so why can’t they make exceptions and with Doctor verification ship out some Levoxyl to people like you who are having such a difficult time? I will pursue that tomorrow. I will continue to pray for you.

August 16, 2013 at 8:35 pm
(564) Janet says:

I posted that I was going to switch to the Sandoz but then I decided to continue on the Synthroid, I really thought I needed to be more patient.

Well …. I feel so horrible! I feel crazy and so nervous yet I fall asleep like I am going into a coma on my couch at 7PM.

Carbo …..Thanks so very much for posting the Inactive ingredients
in Synthroid and all other thyroid drugs.

Tomorrow I am definitely taking the Sandoz generic levo and hoping it will work for me. I am so tired of this – I have 4 different bottles of thyroid pills in my cabinet … this is insane!

Levoxyl was so perfect!!! I had absolutely no problem whatsoever taking Levoxyl for 13 years.

One tip – if you are on Synthroid NEVER drink coffee 10 minutes after swallowing that pill. I had the most horrible panic attack. I thought I was having a stroke!! I guess that “wait one hour before eating” sticker was actually there for a reason :) BUT that never happened with Levoxyl.

Stay well everyone and thank you all so much for all of this amazing information. This site is so great and so supportive.

I will post how I am doing on the Sandoz and my blood test results I get next week. I am going to find an Endo Doc Monday as much as I like my doctor – he just isn’t that helpful with the thyroid issue.

August 16, 2013 at 11:27 pm
(565) kat says:

Hi everyone…I am new to this site but again I am so grateful that I found you all. I had a terrible day. I am starting to have panic attacks over this entire “pfizer” recall. We all share the same commonality in that we need the levoxyl and cannot take the other thyroid medicines without suffering terrible side-effects. What governmental agency is out there to protect us and advocate our cause and make Pfizer make the levoxyl available in a “reasonable” time? Is there a law that states that you have to wait one year to reformulate medicine and containers? Again, I think that we should focus on advocacy agencies that will put pressure on Pfizer and make the levoxyl available before mid-2014. If the medicine was a big money-maker like viagra would they take as long? I feel sorry for all of us that are suffering but again we have to ally and go after the “big-guys” at Pfizer.

August 17, 2013 at 12:50 am
(566) Karen says:

Hi Kat:

I can understand your concern – I have been trying to find the right replacement for Levoxyl for me since April 12….It has not been easy.
But I did find one.

Hopefully, many of us on this Forum have paved the way for you to have a much easier transition to another supplement than we ourselves have had. I encourage you to study the entire forum. Any questions not answered, go to the search engine on this site above and find your answers from Mary Shomon’s About.com. She is on Facebook as well.

I am presently working with former colleagues of mine from the Biology Dept of the University where I worked to get answers to many of our questions.. We are looking for a pharmacist or compounding pharmacy that can duplicate Levoxyl. We are trying to release pulled supplies to those in medical need who cannot live without Levoxyl. So please do not give up hope – there are people out there that are very concerned about every individual, including yourself, in this difficult situation.

My father always used to tell me when I was worried about something to not borrow trouble and worry in advance. If you worry now, and then the something happens. you worry again, then you have worried twice. If this something doesn t happen, you have worred needlessly. I am very optimistic that Levoxyl will be back on the market sooner than mid 2014…they have had incredible pressure on that issue.

I guarantee that you will find other alternatives that will successfully work for you, and who knows, may even be better. In the interum, write to your Congress people, local TV and radio stations and newspapers. We refuse to be defeated!

By the way, the med is meant to be swallowed with a glass of water,
an hour before or after meals. Armour thyroid differs in that it can be put under the tongue. There are also certain foods and meds that can interfere with absorption of synthetic T4. All of this info is in the Forum.

August 17, 2013 at 12:52 am
(567) Karen says:

Last paragraph of previous post was meant for Janet.

August 17, 2013 at 2:34 am
(568) cabro says:

Karen, I actually cried when I read that you are working with former colleagues at the University’s Biology Department to get answers and that you are looking for a pharmacist or compounding pharmacy to try to replicate or duplicate the formula. God bless you. The rest of us (and I speak particularly about myself) need to “get on the horn.” They won’t bring it back sooner unless they want to; and we need to convince them that they want to with barrages of phone calls that use people’s time while helping us find our voice as we dig through the beaurocracies. Thanks to those who are posting phone numbers.

August 17, 2013 at 5:50 am
(569) cabro says:

Karen, No, my endo did not mention long term issues with acacia, but he clearly did not like seeing it there. Similarly, the butylated hydroxyanisole and the povidone. He tends to maintain professional neutrality about most things but he did react to those.

August 17, 2013 at 11:21 am
(570) Karen says:

Janet:

Caffeine is definitely something to be careful with while on thyroid meds… It interferes with absorption. I would make sure you don’t have caffeine at least 4 hours prior to taking med and 4 hours after. That includes dark chocolate! Which I LOVE and eat often in small
amounts. And of course caffeinated coffee. I give caffeine a little more leeway in time than some foods.

Please check out post 570 for info on Synthroid – acacia and lactose.
Some patients have documented that Synthroid is less effective during allergy time due to the acacia. If you have allergies, acacia will aggrevate them. Perhaps this happened to you.

BP meds, beta blockers, soy, crucerferous veggies also interfere with T4(levothyroxine) absorption and should be avoided. Thyroid.com has a Web Site listing what food/drug agents interfere with T4 absorption, I will reference that next. This applies as well to dessicated meds.

August 17, 2013 at 12:04 pm
(571) Bonnie says:

Karen:

I’ve been reading all the websites that have been listed here (thank you to everyone who posts them). Googling similar information on my own has been an education and remembered every time I have to take one if these medications. The strength of the pill and the ingredients affect everyone differently.

You had asked me about Synthroid and congestion, hay fever, etc. with acacia and so forth. For one thing, the betadine (povidone) in it causes burning throughout my body, really tightens my skin. My skin gets really dry, flakey, and itchy. My extremities get a numbness feeling. All over arthritic feeling with a low grade fever, aches, anxiety and jittery ness. My head will feel heavy, and i get off balance. I get a good amount of post nasal drainage, but much if the meds I’ve taken have put a film on my tongue and I either get throat drainage or my tongue stays white and dry for awhile with burning eyes. Overall adverse and allergic reactions. I had a fruity smell about me the past few days, and it scared me. I was taking Synthroid so I don’t know if it was a trigger. Today it’s gone. With my medical assistant background, I thought of diabetes onset. With my thyroid out of whack and not getting enough T4 anything can happen. It’s these medications that are slowly killing me.

When I called the Pfizer pharmacy, I begged them to send me pills, and they said they have nothing available and wouldn’t anyway. If you can help with that process and I was getting the same batch of the 125 mcg I had when the recall hit, you would be a life saver. God Bless your efforts Karen.

Also, if 8 on your side gets enough calls the media may get involved. I had a good discussion with Susie when she called back (3 weeks ago) about the issue and I am to call her to let her know how I am doing. I will follow up and do that. Make those phone calls, hopefully it will help.

I’m sure I had more to say, will save it for later.

August 17, 2013 at 12:38 pm
(572) Glenna says:

Hi everyone out there in la la land…

I’ve laughed and I’ve cried reading all the posts, let me just say I prefer laughing!

I am calling my reps on Monday, that is back to school day for me, too.
Will write to the Dallas Morning Bird Cage Liner, and call NBC helpline.
The Dallas News also has a watch dog section who might offer some help. I’ll try to find that number and submit it.

I think we need to plan a national day of protest where we all contact Pfizer, the FDA and our reps on the same day. What do you think?

Bonnie – yes, I was using half of 125 on the levoxyl. It was perfect for two years. I had no allergies, no headaches, no sinus infection or bronchitis, which I got every single year until the levoxyl. Life was beautiful.

I asked my doc to up the dosage of the compounded to see if that will help to 67.5. Will see what happens.

For those of you experiencing anxiety and muscle pain, try a calcium/magnesium blend. It helps me when I feel crazy. Of course, you need to wait four hours after taking your T4. I also take magnesium and my vitamin D closer to bedtime as it really relaxes me. Oh, by the way, Magnesium helps with constipation…yippee!

Karen, thanks for the info on your adrenal treatment. I’ve upped my fish oil, B-Complex and probiotics as I’ve read that helps, too. Will probably start yoga for relaxation soon.

I want you all to know that someone in Texas LOVES YOU and is praying and sending good thoughts out to each of you. I know this is hard but if we all hang together we will win. Never, Never, Never, Never give up.

August 17, 2013 at 2:04 pm
(573) Karen says:

For information on how long it takes the FDA to approve a drug, see:

http://fda.gov/Drugs/ResourcesForYou/Specialfeatures/
ucm.279676.htm

August 17, 2013 at 3:53 pm
(574) Karen says:
August 17, 2013 at 3:54 pm
(575) Anne says:

Hi all, here’s my update:

Have been on Sandoz lev. for a month now. The only side effects are, tired/low energy. Sooo much better than Mylan and Synthroid. I can live with Sandoz until Levoxyl is back. Hope this info helps others.

August 17, 2013 at 9:48 pm
(576) Ed says:

Hi everyone,

I looked at the link Karen posted and searched Levoxyl from same site. See Enforcement Reports dated Week of April 24 and May 31. One is :

Reason For Recall Chemical contamination: emission of strong odor after package was opened.

The other is:

Reason For Recall Subpotent Drug: The products were below specification for potency at the expiry stability point.

Both are:
Voluntary / Mandated Voluntary: Firm Initiated

Looks like that is the Pfizer story and they are sticking to it. So as was mentioned in a previous post regarding calls to FDA and Pfizer, looks like FDA was telling the truth and it is on Pfizer for pulling like they did. I’m still having difficulty making sense of why so long before it makes its way back on the shelf. The only rationale I can come up with is it may be in the supply chain to Pfizer from their ingredient suppliers who may need to be validated or re certified. On the premise that Pfizer gave themselves plenty of wiggle room with time by saying, back in June 2014, maybe they will get it ironed out well before then and be available sooner than expected. We can hope anyway.

If we tighten the screws and turn up the pressure from all angles, media, Representatives, and calls to Pfizer regularly, maybe they won’t sit down and forget we are hurting out here and pick up the pace a bit.

I’ve gone through the denial and anger stages, now I’m in acceptance and ready for action and results. Doesn’t mean I’m not still hurting though.

August 17, 2013 at 11:01 pm
(577) kat says:

Dear Karen…Bonnie and everyone on the “levoxyl” boat…sorry for coming across like a frustrated downtrodden give-up person. Just had a bad day . I was involved in local politics for sixteen years and will make some phone calls to some people in human resources at the federal government level. That is so kind of you Karen and it got me motivated. Whatever you need for me to do just tell me. I ama retiredschoolteacher/counselor and the politics was just a hobby (haha). I realize that you all have been part of this site much longer than me and again whatever you want done just let me know. Have a nice weekend. Will let you know the results of my phone calls next week,

August 18, 2013 at 6:14 am
(578) Karen says:

Good Morning

Bonnie: I had the same response you did regarding getting more Levoxyl from Pfizer a couple weeks ago. It is an avenue of investigation – I went to a local attorney(no charge for first 30 minutes) and his firm is volunterring to look into the issue.

And Kat, I probably over reacted, but I cannot let a “bad day” anyone has go unnoticed. Good to have you on board. A good political move from any one of us would be to get Oprah and/or Fox news involved. I would like to get through to Mary Shomon and see what she has done or could do.

Ed: Thanks for checking the FDA site more fully.

I also have two excellent pharmacists willing to help in any way.

Will keep everyone posted as the story unfolds…

August 18, 2013 at 6:36 am
(579) Janet says:

Karen,

Thanks so much :)

I knew about the coffee, I was just rushed that day and learned a very valuable lesson that day!! Duh me … there’s a big sticker from the pharmacy on the bottle too :)

I hope nobody else does that – it was horrible.

Synthroid was really hard on me and thanks to this site I now know why. I have allergies and it’s more than likely the acacia. Thanks very much for that information!!! I felt so congested and just sick when I was taking that Synthroid. My sinus and chest felt so heavy with congestion and my eyes kept tearing. I stopped taking it … that all stopped in 2 days.

Thank you so very much for that info. and everything everybody here has contributed.

I am lucky to be very healthy other than hypothyroid so that is the only pill I take. I will check into the suppliments. Thanks for that as well.

I wish Doctors paid more attention to the inactive incredients in meds. When something like this happens I guess that’s when you find out you just might need a new Doctor.

I will write to/call anybody any of you suggest if I can help in anyway, please let me know. I am not involved in politics or anything but if you think my voice would help – I’ll do it! And I can be very tenacious when it comes to getting what I want ….. and I want Levoxyl!!

Hang in there everybody and thank you all so very much.

August 18, 2013 at 6:47 am
(580) Janet says:

Ann,

I completely agree with you on post 585. I am taking the sandoz now too after a very bad experience with Synthroid. Thanks.

Hang in there :)

August 18, 2013 at 10:24 am
(581) Karen says:

If one keys in “What foods interfere with levothyroxine absorption” on the search engine above on this Forum, you will get ten Web Sites on the issue. Also at the bottom will be more references to what foods interfere with T4. Interesting to note that Tirosint does not have an issue with coffee…this is on one of the 10 sites.

You can do the same with “What drugs interfere with T4 absorption”

Synthroid aggrevated my allergies so much I could not breathe and swallow. Also had a depressed, “dark” mind. Gone in two days as Janet mentioned above. I wonder why would they put acacia or Providone in it. I reported my symptoms to the Synthroid manufacturer.

I have posted some info more than once. I don’t intentionally repete myself(most times) , but so many new readers may not read the entire Forum, We are pushing 600 posts now! Amazing.

August 18, 2013 at 11:27 am
(582) Imediject says:

I just joined the Forum this morning, as I’ve also been on a many month search for something to replace Levoxyl. I have Hashimoto’s and had been on Levothroid for 36 years, was switched to Levoxyl when that went pulled. A couple months later Levoxyl was pulled. Since then I’ve been on ‘the search’ for a replacement, and without anything even close to success. I’m looking forward to being in touch with others that are going through the same mess. I could probably write a book about this experience, but I promise I won’t post more than a ‘chapter’ at a time. :-)

August 18, 2013 at 2:46 pm
(583) Karen says:

Cabro: Curious to know if there is a formula for how much T4 one should add to their Armour dose in the beginning period? I am on Erfa 60 grain with 35 mg T4 and 8 mgT3. for another 2 weeks. No help from the primary on that one! Final dose will be 105 grain for my height of 5’9″ and weight-want to keep it a secret.

What is the purpose for having a doctor to prescribe a med? I am getting most of the information from the pharmacist and Forum!

August 18, 2013 at 2:51 pm
(584) Karen says:

Welcome IMediject to the Forum. Look forward to hearing your story.

August 18, 2013 at 7:46 pm
(585) Anne says:

Janet:

I’m glad you’re trying Sandoz Lev. I found out about Sandoz on this forum at 100 + postings. I had been thru hell with Mylan and Synthroid. My Endo was of no help.

Thanks to all of you for caring and sharing.

August 18, 2013 at 10:55 pm
(586) LauraLee says:

**Karen G** I was on levoxyl 200 mcg
Now on Tirosint 200 mcg. I have not had to many problems on it just so tired and feel off balance.
I did start taking all 200 mcg in Am. see my doc in few days and will get levels checked should be interesting,
I just feel like I have to find something I can live with and don’t understand why I should have any problems with liquid t4 ?? I have not been this tired in a long time which makes working a challenge.
I will let you know when I get my numbers in..
thank you for the replays.

August 19, 2013 at 1:34 am
(587) Linda says:

This has been so helpful. Just as most here, I was on Levothroid for years, every time the dr would try to switch or would forget to write for no generic, I would end up very low. I have been on armour, levothyroxine, synthroid, none of them worked. I would always end up back on levothroid and I would ask not to switch. I changed drs. Once, because they wouldn’t keep me onit and said I could take generic. When they pulled Levothriod, I went on Levoxyl, to worked. I was on 137. I had such a great pharmacist who found all he could for me, but now I have been on levothyroxine for 6 days. I don’t know if it is my imagination or not, but it feels liked am already experiencing the tiredness. It sure helps to be able to read other’s experiences.

August 19, 2013 at 12:47 pm
(588) Pam says:

I had my thyroid removed 10 yrs. ago due to thyroid cancer and have been on Levoxyl (not Synthroid). I want to know if you can replace the Synthroid with pure iodine? I would like to get off the prescription drug. Does anyone know?

August 19, 2013 at 1:01 pm
(589) Imediject says:

I’m going to create a few small posts, to keep this from looking like an Encyclopedia!  This Thyroid Thing is so frustrating. Like all of you, it ticks me off that drug companies can play around with thousands of lives and just sluff it off as, ‘well, just try something else until we get our act together. Patients have no choice but to flap in the breeze until they find something that works. Anyhow – all venting aside – this Levothroid / Levoxyl snafu has turned me upside down. I have 8 autoimmune conditions that started with Type I Diabetes 50 years ago, includes Hashimoto’s and Lupus, and the last addition was Celiac’s a couple years ago. And all of this is like building blocks. You knock one over and they all fall down, especially when it comes to thyroid meds. So while I’ve been trying to find a Levoxyl replacement I can actually tolerate, I’m juggling all of the other issues that have gone out of wack as well. The Levothroid to Levoxyl transition was seamless, dose for dose. I’m now on my third try at working with Tirosint. That’s been a learning curve in itself! My first try was a dose to dose switch of the 150 Levoxyl I’d been on. Within two weeks, I was miserable. PVC’s, pounding pulse, anxiety – been there done that before so my doctor and I decided to drop the dose to 88 mcg. Which also over medicated me. I switched back to the few Levoxyl I had left, and decided it was time to do a little research. All the other thyroid meds have dyes and fillers. Tirosint didn’t, so why couldn’t I take it!!?? AND, this is what I found – (To Be Continued)

August 19, 2013 at 1:08 pm
(590) Imediject says:

Continuing – A study was done in early summer of this year, and the makers of Tirosint announced “data that show a lower dose of Tirosint is required as compared with standard T4 for hypothyroid patients with impaired gastric acid recretion to reach their target TSH”. This included people with disorders like H.phylori infections, lactose intolerance and celiac’s. Okay, I’m seriously lactose intolerant, and I have celiac’s — duh! Tirosint also has a bioavailability of 103% compared to the other meds, so it’s much absorbed better. I showed the study to my endo, and I’m currently finishing up week one of 75 mcg Tirosint. No PVC’s or cardiac problems so far – fingers and toes crossed – and I feel reasonably well!! If I can handle this, we’ll recheck levels every couple months and titrate up if necessary. I hope this works, as I’m literally out of other options. Also, another study showed that Tirosint and coffee aren’t a problem as it is with other thyroid meds. Not an earth shattering discovery, but it’s nice to have my one cup a day of decaf without having to wait an hour after my meds. :-) One last note and the links to the articles I mentioned, coming up –

August 19, 2013 at 1:11 pm
(591) Imediject says:

Honestly, if I ever get straightened out on Tirosint, I would never go back to Levoxyl simply because of what they’ve put me through these past months. I would never want to put $$ back into their pocket for thyroid meds. The Levothroid folks permanently called it quits in July this year, and I actually wouldn’t be surprised if the Levoxyl company ends up doing the same thing. When you get folks away from something for long enough, no one wants to go back. Yep, I’m venting again!! lol I promise to keep ALL posts much shorter next time. :-)

BTW – here are the links to the article on the Tirosint study, and the Tirosint and Coffee.

http://www.prnewswire.com/news-releases/new-data-highlight-use-of-tirosint-levothyroxine-sodium-capsules-in-patients-with-t4-malabsorption-due-to-gastric-disorders-212353481.html

http://thyroid.about.com/b/2012/02/21/tirosint-bypasses-coffees-effect-on-thyroid-drug-absorption.htm

August 19, 2013 at 3:02 pm
(592) Karen says:

Pam:

Switching to iodine is not going to supply you with two most important
thyroid hormones, T4 and T3 which is what the synthetic levothyroxine Synthroid does. From what I have read, taking iodine may help you if you still have a thyroid that is sluggish. Either the lack of iodine or too much iodine can be a factor in Hashimotos Disease, but I have never heard of iodine being a supplement in itself to someone who has no thyroid at all. I would be interested in hearing other comments. This is definitely a question for your endocrinologist.

August 19, 2013 at 3:45 pm
(593) Karen says:

LauraLee:

I have read that Tirosint is more potent and better absorbed than other synthetics and I would be concerned that you are getting too much. Another good question for an endocrinologist. I too am interested in other comments. I have read Web Sites(from Mary Shomon’s About .com) that discuss the Tirosint issue -just key in “Tirosint” on the search engine on this Forum above. Hope to hear more when your recent lab tests are in.

Linda:

I would be interested in knowing which levothyroxine you have been taking. They are listed in post 562/3/4 with inactive ingredients. Many people on this forum including myself had very bad reactions from Synthroid and Mylan brand levothyroxine. See post 482 for a great Web Site on the dessicated thyroid meds like Armour if that may be of interest to you.

August 19, 2013 at 3:52 pm
(594) Karen says:

IMediject:

I am currently absorbing all your information and waiting for the other sites you mentioned. Sounds like you have been through a lot. I hope the Tirosint at the lower dose continues to work for you and that you have gained some valuable information from this forum. I am sure we will all benefit from your information . Thank you for sharing!

August 19, 2013 at 4:18 pm
(595) Imediject says:

Karen,

I posted the third part to my note, but possibly the links kept it from going through. I’ll try again –

“Honestly, if I ever get straightened out on Tirosint, I would never go back to Levoxyl simply because of what they’ve put me through these past months. I would never want to put $$ back into their pocket for thyroid meds. The Levothroid folks permanently called it quits in July this year, and I actually wouldn’t be surprised if the Levoxyl company ends up doing the same thing. When you get folks away from something for long enough, no one wants to go back. Yep, I’m venting again!! lol I promise to keep ALL posts much shorter next time. :-)

BTW – here are the links to the article on the Tirosint study, and the Tirosint and Coffee….”

Since the first ones didn’t go through – you can find the article on lower doses of Tirosint by searching “lower dose of Tirosint”. It’s an article that was presented to the AACE and can be found on several sites. As for the coffee issue, just search “coffee and Tirosint”. Maybe some of this info might help others adjust to Tirosint while or if waiting for Levoxyl to return.

August 19, 2013 at 5:35 pm
(596) Bonnie says:

I’m glad that other people here are able to take the generic Sandoz brand thyroid medication. After my third try taking it, in the course of the day, I gradually got that explosive headache at the temples and searing aches down through my jaws (feeling like a stroke coming on).

Each medication comes with it’s chemical reactions that are so hard to tolerate. I need to see someone (doctor, endo), but I’m tired of messing with these drugs. It’s become so burdensome at this point (and expensive). My husband thinks after 5 months of this, I’d be settled on a drug by now. Those with normal thyroid function never have to worry about this and they can’t comprehend the other person with an auto immune disease struggling with these medications. Not every drug is the same but hubby thinks they are and he wants his wife back (I don’t blame him because I want to feel like my old self so badly).

I will mention again how much I miss my compatible drug “Levoxyl”. Every day I ask the same question as to why this drug is missing from my life and still can’t believe I have to go on without it. I need to have labs done for TSH and I don’t expect them to be balanced with the way I’ve been taking medications (hap hazardly). At this point I don’t have any idea what to do. All I can think about is getting my regular medication back.

Speaking of coffee or tea caffinated or not, I haven’t had the pleasure of drinking any of it. When we were traveling north and I had my 2 leftover Levoxyl I had a little coffee and tea. Once my pills were gone it was back to feeling jittery, arthritic, etc. on other meds. so I went back to water. I really wished I could I had my normal routine back and enjoy simple pleasures again.

August 19, 2013 at 6:03 pm
(597) Linda says:

Thanks Karen, I looked it up, the manufacturer is Lannett and the strength that I am on is the generic for Synthroid. It doesn’t feel like it is working. I’ll have to see if I can find the other kinds that are listed here.

August 19, 2013 at 6:35 pm
(598) Linda says:

Thanks Karen, I looked it up, the manufacturer is Lannett and the strength that I am on is the generic for Synthroid. I’ll have to see if I can find the other kinds that are listed here.

August 19, 2013 at 6:44 pm
(599) Bonnie says:

Welcome to all the new posters and for sharing your stories and experiences.

August 19, 2013 at 6:50 pm
(600) Karen says:

Linda:

From the Lannett Web Site I see that the inactive ingredients are colloidal silicon dioxide,lactose, magnesium stearate, corn starch, acacia, sodium starch glycolate.

Many of the people on this forum are going to Sandoz brand of levothyroxine which has just 4 inactive ingredients, and two of them(the first two) are the same as Levoxyl. See post 562 for Sandoz. Every situation is individual… what works in one might not work in another. You might have to call around to find Sandoz. .

August 19, 2013 at 7:42 pm
(601) cabro says:

Karen,

I was sure I answered you about T4, but it never posted. Anyway, the part I remember about adding T4 was that we tinkered with it and tested for a good while, maybe 16 months, before we ended up with 50mcg + 60mg (1 grain) of Armour. For those of us cancer patients with no thyroid, that T4 base is critical, so my framework is different from yours. What you need is lab testing to see how the free T’s are responding. Without testing, you will be working with how you are feeling, and that’s harder if you don’t know when your body tends to respond to T4 changes. Mine responds after 7 days. On the dot, in most cases. Others tend to need a good 2 weeks for T4 to level out. So, it can be a very slow process. Is your thyroid producing any T4 that you know of?

Hope this helps.

August 19, 2013 at 9:05 pm
(602) Karen says:

Cabro:

Yes, that helps a lot. Thanks. And no my thyroid is not producing any hormones whatsoever. So I was told. I have Hashimotos and the immune system knocked out the entire function of the gland. Fortunately I have not had cancer, I still have the gland. Knock on wood.

Levoxyl for past ten years always worked perfectly – the T4 converted to T3 in the correct ratio. Never was told I needed to add T3 ever. I took Synthroid for 20 years with no problems. The Synthroid of today must be a different formula with more inactive ingredients. I now understand it was the acacia and providone that bothered me recently. Too bad, because I thought the Synthroid delivered the T4 very well, much better than Sandoz. But that is in ME and different folks different strokes.

Hope you are doing well.

August 20, 2013 at 11:32 am
(603) Karen says:

Cabro:

Here is some information we both should have in regards to our exposure to Gentamicin history. Good information for others on the Forum as well.

http://www.fda.gov/Safety/Medwatch/SafetyInformation/SafetyAlertsfor
HumanMedicalProduct/ucm365302.htm

August 20, 2013 at 12:49 pm
(604) Karen says:

Cabro:

This FDA site did not open for me – I think you might have to hand post in your browser adding the last part that is not in blue. Sooosorry for that extra work, but it is worthwhile info. K

August 20, 2013 at 1:51 pm
(605) Karen says:

Another way to get the site above:

FDA Medwatch-Fluoroquinolone Antibacterial Drug: Drug Safety Communication-Risk for Possible Permanent Nerve Damage

August 20, 2013 at 1:53 pm
(606) Karen says:

Bonnie:

Did you take your T4 today?

Love, Mom Karen

August 20, 2013 at 3:46 pm
(607) Karen says:

Bonnie:

So sorry Bonnie, my previous message clicked away from me before I finished what I wanted to say.

I just hope I can encourage you to take some kind of T4 every day – one with the least side effects, and that you can get your thyroid levels up to normal. I have re read your past posts trying to figure out a solution , and I sincerely believe that many of the symptoms you are describing are symptoms of hypothyroid and that the meds themselves are not entirely to blame.

I have been hypothyroid and can spot the symptoms well . They are subtle and quietly creep up on you . Many of your descriptions describe feelings I too have had when I was below normal thyroid. As the levels came closer to normal I awoke and realized I was really in bad shape until I knuckled down and attacked my regiman with vigor and made sure I got T4 every day.

I have checked with the FDA and the inactive ingredients in the other T 4s are not dangerous to your life. They should not cause a heart attack or stroke or endanger your health. To get back your life and family and feel energy again is well worth handling some side effects that I believe can be over ridden once the thyroid levels are normal.

I am taking 50 mcg Synthroid now with my Erfa and I was so hesitant to do it, but I decided I wanted my life back so badly . I WON! And you will too. I am now feeling great. The acacia aggrevates my allergies, but I fight them off every morning with success. I would feel comfortable taking the Synthroid in full, but I am still in trial period with Erfa. I have been told I will always need a back up on T4 with the Erfa and that is OK. My thyroid does not work at all. But I have my life back! You will to.

Forgive my silliness – I do sound like a “Mom”, But it is only because I care. I have gotten attached to my Forum Frends!

August 20, 2013 at 6:33 pm
(608) Linda says:

Thank you Karen. I have called Walgreens, WalMart, CVS, Costco and Target. They all say their levothyroxine is Mylan. Walgreens does carry the Sandoz, but only in a different strength. I will continue to watch here and see if I can find any place I can order and try Sandoz.

August 20, 2013 at 6:45 pm
(609) cabro says:

Pam,

No, iodine can not supply any thyroid hormone at all. If you had a thyroid, one might argue that adding iodine could improve the efficiency of the thyroid gland. But in your case (and mine), that is no longer possible. Classically, thyroid cancer survivors must take T4 in the form of Synthroid, Levoxyl or Tirosint brands or generic Mylan, Sandoz or Lanett levothyroxine. Additionally, some doctors have enlightened themselves and will allow you to take Armour Thyroid or NatureThroid. However, few are knowledgeable enough to lead you through the steps to get to the correct dose, and after thyroid cancer they tend to just say “no way.” My endo had me mix the two. I was taking a base dose of 50mcg Levoxyl (to insure T4 supply) and 60mg Armour (split 30 + 30). In my case, the Armour did not supply enough T3 for me and we had to switch to synthetic for both.

Ideally, the oral T4 (which is the inactive form of the hormone) that you take now to stay alive is converted by the body (mainly in the liver and some other organs) into T3, which is the active and usable form of the hormone. However, we are not all “ideal.” Many need extra T3. I did.

I hope you are continuing your Synthroid. Be well!

August 20, 2013 at 6:50 pm
(610) cabro says:

Karen,

The link and other searches only led me to the fluoroquinolones, like Cipro, Levaquin, etc. Kind of scary what I found for those.

August 20, 2013 at 7:09 pm
(611) cabro says:

Karen,

It is curious to me that Cipro, an important drug for treatment for such things as anthrax exposure, C-diff and MRSA, has suddenly acquired such a warning after being on the market for SO many years and after such wide usage.

Where does gentamicin, an aminoglycoside, come in?

August 20, 2013 at 7:13 pm
(612) cabro says:

Mediject,

I hope you continue to benefit from the lower dose of Tirosint. I was OK on it for the first month. But the second month not only did my T4 soar and my TSH plummet (dose too high), I developed a nasty burning in the gut that was relentless until about 4 hours before my next dose. I had to give it up. I hope you are one of the many success stories!

August 20, 2013 at 7:21 pm
(613) cabro says:

Karen,

I’ve just realized that the 50/60 dosing I’ve discussed will surely be too high for you, working or non-working thyroid. I was on that dose when I needed to be well-suppressed for thyca management after RAI treatment. That dose kept my TSH around .02something (at one point it was .006) and my T4 was at or above the top of the range, which is much too high. That’s one of the reasons we had to change to all-synthetic. Go slowly, and I would consider titrating **down** your T4 soon, especially if you try to increase Erfa.

August 20, 2013 at 8:09 pm
(614) Imediject says:

Cabro,

I actually feel pretty positive about this current dose of Tirosint. For the first time in ages, I’m actually sleeping at night, and there are no cardiac or anxiety symptoms at all. I’m not sure what my final dose will turn out to be, but if I remember correctly, the participants in the study I mentioned were able to drop their dose of Tirosint around 40% from what they’d taken before and still have good levels. I’m just happy to finally have a place to start that actually works!! :-) The ‘burning gut’ happens to me with drugs like Synthroid and many of the other levothyroxines that use Lactose for a filler. They give ‘lactose intolerant’ a whole new meaning! lol

August 20, 2013 at 11:27 pm
(615) Karen says:

Cabro:

That site about Cipro was brought to my attention by another person I know that was damaged by Gentamicin. I already havea vestibular neuropathy caused by the gentamicin. This person was alerting other gentamicin damaged people associated with Wobblers.com about the warning on that class of antibiotics. I knew of your exposure to Gent.

My primary recommended the 50 mcg T4. I have an appt with an endo on Aug 29 to discuss the Erfa. The specialist is familiar with synthetic as well as dessicated, so I am assured I will be in good hands. In the meantime, I will definitely do as you suggest.

August 20, 2013 at 11:31 pm
(616) kat says:

Hi everyone…Called everyone I could think of that can help with the levoxyl recall. I am going to e-mail Oprah..after all she suffers from a thyroid disorder. Also, I live in Pennsylvania and was able to get the Sandoz “levo” from Medicine Shop. The pharmacist told me there are only five manufacturers who make the levothyroxine. I was able to get the 200mcg Sandoz “levo” filled in three days. Will give you the results of my phone calls as soon as I get return calls. God Bless and thanks again for all the information and support.

August 21, 2013 at 10:20 am
(617) Lin says:

I have been taking levoxyl for about 20 years and now having a difficult finding a new med. I tried levothroxine by Mylan for 6 days, it causes me to retain fluid in my legs and nausea. I have also tried the sandoz brand, it still causes me to retain fluid. I can notice it even after 2 days on the meds. I did wait for 2 days before trying the new brand. It also makes my nose itch, weird. I am not sure what to do now. I have prosthetic legs, but am very active, so any fluid retention makes it very uncomfortable for me

August 21, 2013 at 1:22 pm
(618) pauline says:

Do any of you ever experience a fullness/soreness in the throat and feeling like you are getting the flu or something? I switched to Sandoz 30 days ago, feeling just ok but not sure if it is hypothyroid symptoms that are causing my ill-feeling or if I am really coming down with something.

August 21, 2013 at 3:33 pm
(619) Janet says:

I am 5 days on Sandoz levothyroxine and feel pretty good :)

I did start on a lower dose and I think that helped a lot. Initially, on .125 mcg’s I had a fast pounding heart and extreme anxiety, now on the lower dose (88 mcg’s) I have no anxiety and my heart rate is normal I feel some energy coming back and am finishing things I start, my skin feels better and last night when I washed my hair – a lot less fell out. Part of this may be that I have been on Synthroid for a while before Sandoz Levothyroxine.

I was taking .125 mcg’s of Levoxyl but maybe the “potency issue” recall is causing problems as we were not getting the full amount of Levoxyl and need to keep that in mind when replacing – Not sure but makes sense to me as I am doing great on a lower dose of Sandoz levothyroxine after only 5 days. I am more than willing to do this slowly and have blood work in 2 weeks. I will post results.

Synthroid was really hard on me so I am so happy this is working. I feel just fine on Sandoz and I have no side effects at all now.

Pauline: No fullness or soreness in my throat at all.

I hope everyone is doing well. This is so very hard and I feel very optimistic now about the sandoz and hopefully continue to do well.

August 21, 2013 at 3:52 pm
(620) Janet says:

Bonnie,

When I initially took 125 mcgs of Sandoz I had that feeling like I was having a stroke or something horrible. I think it was too high of a dose because at a lower dose I feel fine.

I hope you are doing ok and on some meds. Please see the Doctor and get on some thyroid meds so you don’t get hypo and depressed.

This has been very hard and I am so very sorry that happened to you. I know it is VERY scary. I hope you are doing ok .

August 21, 2013 at 5:14 pm
(621) Bonnie says:

I was planning on leaving a reply early last night but I came down with optical migraines in both eyes. Had them before in my left eye but this was scary. With using my IPhone for everything, I wasn’t going to try and focus on staring at the small print. I had such muscle burning and neck pain with burning eyes last night. I suspect changing medications over the last few days was the culprit. Now I worry about my eyes. :(

Mom Karen:
I haven’t been so faithful with the T4. I hear what you are saying but these drugs make me feel so sick with sore, painful muscles (brought on by these meds making me feel worse then the hypo disease). I was taking something every other day for relief.

As I confess, please don’t judge..
I took Sandoz one day (didn’t think I could tolerate it a second day with that headache) then retried the Levoxyl I bought up north and I would have stayed on those pills, but just as before I had a burning, dry throat (lump in my esophagus feeling) super burny lips, very salty taste in my mouth all day (something wrong with those pills). Yesterday, I took a quarter of the 125 mcg Synthroid (hurting ALL over with crying jags, aches and jitters). Today I took even less off the Synthroid. If I didn’t have such wicked side effects I’d most certainly take one if these every day. Don’t know if tolerating a little piece of the Synthroid every day will do me much good though.

August 21, 2013 at 5:21 pm
(622) Bonnie says:

Cont’d.

I’m guessing the meds are too strong for my now 97 lb. frame. Problem with the 50 mcg. Pills is the strength seems better for my body size (although I didn’t notice a problem with the leftover Levoxyl 125 mcg i used up recently with my wt. loss). The 50 mcg’s in any of the medications blurr my vision so badly and I’ll have swallowing problems (as if its not strong enough). I could barely swallow on 50 mcg of Synthroid (was painfull). I remember morning dry heaves on all the 50 mcgs from thrush on my tongue (doesn’t matter if they are dye free). I really have a hard time understanding any if this with how my body reacts so badly to everything I’ve tried. I worry what’s going to happen to me. My autoimmune system is either that smart or that dysfunctional or the pills are that horrible in MY system.

Today I made some phone calls and I felt like the Pfizer medical information people were less patient. I asked two of their people about Levoxyl coming back before 2014 and gave them my health story, and they seemed anxious to get me off the phone. When they bring up the FDA’s approval I have mentioned its up to them (Pfizer to get the pills out sooner). They said it takes a long time to get everything approved with the medication. I asked them if other people are calling and wanting to know as I can’t be the only one who takes Levoxyl and they did tell me others are asking (reluctantly).

I left a message with 8 on your side to call me back. Want to give an update and hopefully others here have contacted them. Could get in the media if enough people call and let them know how much you need this medication before 2014.

Please continue to make periodical phone calls to contacts here or other sources you can think of.

August 21, 2013 at 5:25 pm
(623) Bonnie says:

Hi Kat! How does one get ahold of Oprah??? I was wondering… Her impact would be a Godsend.

Karen, your plan for working on getting Levoxyl back before 2014 is always in the back if my mind too (hopeful)! Much love back to you too and to everyone here. <3

August 21, 2013 at 5:34 pm
(624) Karen says:

Bonnie: We don’t make any judgements on this forum, only suggestions we think will help. I can tell you have a lot of medical experience. So keep plugging in there. You are in charge of your own body and know your symptoms well.

Mom Karen

August 21, 2013 at 9:44 pm
(625) cabro says:

Janet and all,

When I came off Synthroid, it was one week to the day and I woke up feeling distinctly better. So, for me, I give thyroid a maximum of 9 days to improve my status. After that, I know it’s not going to work. We are all different, however, so I hope you feel all right after a good 10 days.

On the other hand, if it is something allergic that causes symptoms, it can crop up either immediately or somewhere down the road. Allergies and intolerances can be tricky. At first Synthroid was a vast improvement for me over Tirosint. But it appears I am allergic to some ingredient(s), because my symptoms after a month started accumulating. I was in such distress after 10 weeks that I was considering going off meds altogether (I have no thyroid) until I could get some help from my endocrinologist. Fortunately, he came through and things worked out for me. If we can’t get the media involved, then we have to bombard Pfizer with calls.

I’m so sorry we are all living under the worry of no Levoxyl and I agree that we all need to keep calling Pfizer, as much as I hate to give them any of my personal info (even my name, address and phone number). At some point early this fall, when the time is optimal, I will try to rally the folks on the cancer forum I read daily. The Levoxyl patients over there are also suffering.

August 21, 2013 at 9:46 pm
(626) cabro says:

Kat,

Just noticed your post (587) and your desire to call some people to try to get a little help. Just wanted to say thank you.

August 21, 2013 at 9:54 pm
(627) cabro says:

pauline,

Do you still have your thyroid? If so and if you have a feeling of fullness in the throat, you might want to check in with your doctor to have your neck and thyroid examined. I’m just wondering if the Sandoz is somehow “irritating” your thyroid. Not sure if that makes sense…..Just thinking aloud…..

August 21, 2013 at 10:27 pm
(628) pauline says:

Cabro,

I DO still have my thyroid. And today, I made an appointment with my endo to have a ultrasound on my thyroid. My recent TSH came back at 2.22 on Sandoz. My Endo has instructed me to up my dose on the weekend to a pill and a half. So, maybe the Sandoz isn’t as strong as what I was taking. Either way, I have ordered a 90 day supply of the Sandoz today at Costco (San Diego), since I was told today that they could change mfgers at any given time. At least if I can stick with the same mfger I can just modify the dose.

Janet, glad the Sandoz is working out well for you. Hope it continues.

Karen, thank you again for starting this post. If it hadn’t have been for you, I would never have even given a thought as to what we have been ingesting in these pills, hence some of the side-effects!

Incidentally, there was an articlce published on 10th August in the L.A. Times about how the Thyroid “issue’ is not being property addressed as far as how to handle it. I’m sorry I don’t have the link to post here, but the gist of the article was that MORE needs to be done, other than what is being offered to thyroid patients.

August 21, 2013 at 10:40 pm
(629) cabro says:

Just read that Oprah’s thyroid MD is in Houston, Dr. Rhida Arem. Cash only.And his office makes their own compounded bioidentical hormone for the individual patient. Oh, for a lottery win…….

August 21, 2013 at 10:41 pm
(630) cabro says:

pauline,

I’m glad your doctor is up to speed with your situation and is being pro-active. Let us know how you are doing.

August 21, 2013 at 10:57 pm
(631) Karen says:

Pauline:

It is my understanding that a TSH of 2.22 is normal. The most recently updated numbers for normal TSH are .3 to 3.0 per an offical thyroid committee, I will get the details to you later.

And that article you are referring to was also in the Walstreet Journal. I will try to get the Web Site on it. Lastly, I am not at all responsible for this forum. It was Mary Shoman who started it, but I certainly appreciate your complement. And I am very dedicated to contributing to it. I don’t want anyone else to go through what I have gone through the past 4 months.

Kat: Great going, we appreciate your efforts. Can you also contact Donald Trump and see if he will start a new pharmaceutical company to make a duplicate to Levoxyl. This may cost big bucks to do. I am serious. Let’s Rollllllllllllllllllllllllllll, guys!

Lin: If you check out post 482 you will see a Web Site for info on dessicated natural thyroid. You also might consider compounded formulas, but be sure to check the rating of the compounding pharmacy and make sure they do batch testing.
Welcome to the group.

August 21, 2013 at 11:13 pm
(632) Karen says:

Pauline:

If you key in “Wallstreet Journal Highlights Needs for Thyroid Options”in the search engine above on this Forum you will get your article in the Wall Street Journal.

Cabro:

THAT is super information. Let’ s contact that doctor!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Thank you. I will try tomorrow.

August 22, 2013 at 12:38 am
(633) cabro says:

Thanks, Karen, for the info on that class of drugs. I have taken several of them too many times to count over the years. Scary.

August 22, 2013 at 12:40 am
(634) cabro says:

pauline,

I wish I could see that doctor for the hormone. Unfortunately, selling all my possessions would probably not get me in his door. :-/

August 22, 2013 at 3:22 am
(635) Karen says:

Cabro: Do you have any idea what he charges for a visit?

I am skeptical about a doctor that does not accept insurance. I am sure there are other doctors out there that could probably do the same thing. At least we might be able to get some report on what kind of compound he uses for the thyroid med. Distance and cost would be a huge consideration for me, too. I have already spent a lot of money on trying different meds..

I am going to a highly recommended endocrinologist on Aug 29 who was referred to me by my ENT. He is a specialist in both the Synthetic and dessicated. He takes insurance. The facility is also a research facility in both diabetes and thyroid disease, focusing on Hashimotos.I will take good notes and report back what I learn.

It is midnight here in S. California. I could not sleep tonight.
After my third day on even a small dose of Synthroid to go with Erfa, I am having horrible nightmares. This afternoon I noted a fog like issue in my vision. I also had numbness and tingling in my feet. This Synthroid is going in the trash. I have read that environmentalists do not recommend dumping medicine in the toilet as It can eventually seep into the environment.
I will have to check out their recommendation again on disposal of the tablets. Tomorrow the Synthroid people are going to HEAR from me. I had similar symptoms on Mylan – I wonder if it is the Providone.

August 22, 2013 at 7:09 am
(636) Karen says:

Carol from New York:

How are you doing on the Sandoz? We miss hearing from you since Aug 8.

Amanda: no word from you in a while. How are you doing?

August 22, 2013 at 7:47 am
(637) Bonnie says:

To Janet, Karen and everyone here,

This morning I had another optical migraine. I am not doing very well overall. I am making an appt. with the eye dr. for Monday. I won’t drive there on my own with being dilated (eyes). Hubby needs to take me this time and he is really busy. I will check here now and then as I am able. My neck gets so stiff with or without thyroid medication and the thyroid issues are taking a toll. I hope I don’t loose my vision over all this. I just don’t want to put any extra strain in my eyes.

I’ll come on when I can. Love you all, Bonnie

August 22, 2013 at 10:02 am
(638) karen says:

Bonnie:

Hope all goes well at the eye doctor. I had very blurred and foggy vision on even a small dose(to me) of 50 mcg Synthroid. When I was trialing the Synthroid full dose in April the symptoms I notated were visual disturbances, headache, sore neck and upper back, nausea, sore throat and confusion. I should never have attempted taking it again, but it was recommended by my Always on Vacation Primary to add 50 mcg to my Erfa 60 grain just temporarily. The 1st 2 days were great. By 3rd day awful. I am almost thru the first 30 days of Erfa. I will be upping the dose soon. I don’t think I really need any T4 supplement at this point. One grain of Erfa is equivalent to 100 mcg of synthetic. When I reach my final dose of 105 grain, that amount of Erfa should produce normal T3, T4 and TSH levels. So I would interpret that to one grain of Erfa containing 35 mcg of T4 and 8mcg of T3 is as potent as 100 mcg synthetic T4 that converts to T3 in the body. I just could not comprehend how the 35 mcg T4 could do anything to improve my levels. Now I understand. The naturla thyroxin is so different from synthetic. Its better. I will have more labs done today, so my numbers will be ready for my Aug 29 appt. All else turned out well. My ultrasound was stable – my thyroglobulin ab was normal. There is no indication of cancer, and the nodules are way too small to be significant. I am encouraged by Cabro’s notes that her Synthroid symptoms were gone in 7 days.

I still feel much better on Erfa despite the conflicting symptoms from taking Synthroid for a total of 5 days in the past week. Synthroid is history. Let us know how you are doing as soon as your eyes are better. We will be thinking of you. Mom Karen

P. S. My primary is now the Former Always on Vacation Primary.

August 22, 2013 at 1:35 pm
(639) Carol says:

Hi Karen & Everyone,

(Re # 645) No side effects from the Sandoz except still very tired, brain fog & not sleeping well. I had been on 50 mcg of Sandoz (same as Levoxyl) but upped it to 75 mcg to see if it would make me jittery (75 mcg of Levoxyl did that to me) and no anxiousness.

Have to go for the labs (endo will only order TSH and T4) and feel very alone with this. I don’t know what I would do if I didn’t have this forum to read every day.

August 22, 2013 at 2:01 pm
(640) Karen says:

Carol:

You are not alone, glad you read it every day. I will remember that when we don’t hear from you. Hope you are gaining valuable insight from all the posts here.

August 22, 2013 at 2:20 pm
(641) Karen says:

To All:

I have met with my colleagues this morning and the problem we are encountering is that Levoxyl is Patented and no one can legally duplicate the formula. Levoxyl IS coming back in 2014 per the manufacturer but the specific date has yet to be published. They are legally not permitted to release any supplies that were recalled.

I have found a compounding pharmacy in Wisconsin that can supply a filler that is organic brown rice flower for the levothyroxine. This has been tolerated very well by some of their most allergic patients. They also accept a filler you send to them, as long as it is on the doctor’s script and written into the prescription. This does NOT have to be a USP product such as some pharmacies require. Their telephone number is 262-373-1050, the name of the pharmacy is MD Custom RX. They do batch testing.

Well that is my update for the moment. Sorry I do not have more positive report on getting Levoxyl suppled sooner.

August 22, 2013 at 11:08 pm
(642) kat says:

Dear Bonnie, Karen, Carbo , Pauline and everyone affectedl by the levoxyl shortage. I went into oprah winfrey.com and she does not give out her e-mail address. However, you can send your concerns in written form and I will give you all the address after I write the letter. One aspect of the instruction for getting Oprah to hopefully respond is to write from your heart and then re-write it again with more heart and soul. My memory has been very bad and I am running “slow.” Please be patient/ Also, I have several attorney friends who will give me “free advice.” I do not want to sue I just want the Levoxy put back on the shelves tomorrow, Also, I was asked to get back my former political position in January 2014. I had serious reservations about the offer but I never took anything from politics except good people and reaources. If you all have any suggestions in addition to what I have discussed please let me know. God Bless you all and we will get through this because we are strong and only asking for what is fair and right. I will not go back to the Synthroid nightmare. I am much older, and wiser and still cannot believe this is happening.

August 23, 2013 at 2:34 am
(643) cabro says:

Karen,

I have no idea what Dr. Arem charges. I would call and ask. Glenna has posted about him.

I meant to ask you, how do I find ratings on compounding pharmacies? My endo has not been pleased with them in the past, but he gave me permission to make certain inquiries and report back to him. I might as well start at the top! :)

August 23, 2013 at 6:05 am
(644) Karen says:

Cabro: They are regulated by each individual State. I would first check the Dept in your state that oversees compounded pharmacies with that question. You can also check with your state’s Dept of Consumer Affairs . You should be able to get this information on the Internet.

August 23, 2013 at 6:29 am
(645) Karen says:

Cabro:

I would like your opinion on this: I received a packet of papers today from the Endo office I will be going to on Aug 29. I have to sign my life away! I have never seen such a serios of “release of medical information” in all my life. I have to give them permission to discuss my case with a whole page of situations. Plus, I have to give them permission to take a picture of me and/or any other part of my body! This is bizzare. They also charge $100.00 if I cancel an apt less than 24 hours before apt time. My intuition pushes out a lot of red flags. I am going to reconsider going to that office and try to get another endo. I had a TSH taken today, result should be back by tomorrow or Monday.

August 23, 2013 at 10:50 am
(646) Imediject says:

I found an article this morning, and I thought I’d share it with you all. Kind of sheds some light on all of the thyroid med problems that are going on. The link is very long, but it actually gets you to where the article is located. If it doesn’t work, the name of the article is “The levothyroxine spectrum: Bioequivalence and cost considerations”.

http://formularyjournal.modernmedicine.com/formulary-journal/news/clinical/clinical-pharmacology/levothyroxine-spectrum-bioequivalence-and-cost

August 23, 2013 at 2:25 pm
(647) Karen says:

Imediject:

That is a great article, explains a LOT. Thanks. I was able to click on the site in your post with success.

There should be more information published on the inactive ingredients in thyroid meds. .

I continue to do very well on Erfa Armour from Canada. Erfa has lowered my TSH from 14.77 Jul 17 to 6.04(just got report today). I did not get off to a good start on Erfa becasue my primary did not give me proper instruction on dosing. Then she told me to add 50 mcg Synthroid until I got to the 3rd month of dosing. But dosing has been corrected. NO MORE SYNTHROID.

One usually starts on on a 2/3 required dose( 100 mcg of T4 converts to one grain of dessicated) for 2 weeks or less and then you up your dose adding the other third. This will allow your body to adjust to getting direct T3. My primary had the dosing spaced out over three months.

Mag Stearate is listed in the State of CA Prop 65 as a cancer toxin. This is a law enacted in 1986 that requires manufacturers with products that have any of the toxins on the Prop list to warn consumers before they buy the product. The amounts in prescriptions are deemed within safe levels of consumption. To be considered within safe levels, the toxin can only kill one out of 100,000 persons. In the case of mag stearate and any other toxin such as butlylatedhydroxyanisole in Mylan , it is the prescribing DOCTOR that has legal responsibility in CA to warn the patent. I am repeating myself, but don’t want any new readers to miss this.

All for now.

August 23, 2013 at 2:56 pm
(648) Bonnie says:

I’ve been following the posts on here. :)
Just been having a lot of issues on medication and off medication. They are just the wrong medications. It’s been scary with my eyes and I couldn’t get an appt. till Thurs. of next week. I pray I don’t have many more of those optical migraines. Wavy lines start at the center if my eye and like jagged glass is what I see for 10-20 mins. Very frightening.

I’m also looking into another endocrinologist in this area. Only one left so I hope he takes new patients. His office is closed for today so I’ll try on Monday.

I read that last link posted. It was long but helpful. Any changes in batches to what a person is taking can certainly cause problems. I believe we can all agree there.

I have not taken any T4 the past 2 days. Wanted to see if my eyes would straighten out. So much burning behind the retina, red and puffy, dry like sandpaper. Stiff neck and so on. My comfort was my sleeping pill to forget temporarily. It is so very hard being without Levoxyl.

I have cried a river from the suffering and everything involved. I look at pics of myself a few months ago and long to be that Bonnie again.

I keep checking here for updates.

August 23, 2013 at 3:01 pm
(649) Bonnie says:

Karen: I am glad to hear your TSH has improved. Good news!

August 23, 2013 at 3:20 pm
(650) Janet says:

Imediject:

Thanks so much, that link was very interesting. I read it and printed it.

I was told by a pharmicist I know about the AB rated generics and the Pharmacy I use will only sell AB rated generics. Sandoz Levothyroxine is AB rated. I find it absolutely horrific that any lower rated generic is even available!!!

Karen;

I would bet that any Endo will have forms like that for you to fill out and in my experience working with Doctors, I would assume he/she is a very good one. I am thinking the 100.00 cancelation fee would indicate that.
The pictures might be for other diseases that cause skin problems or something like that.. Has it been a long wait since you called for the appointment? I have a very long wait for my Endo appointment. Make sure you find a new one before you cancel as you might have a long wait and your appointment is only a few days away. If you do keep that appointment, I hope he/she is a Doc you like and trust and has you on your way to great health quickly. I will look forward to the post on how your appointment goes, if you keep it.

August 23, 2013 at 3:22 pm
(651) Janet says:

Bonnie;

I hope you are feeling better. I am keeping you in my thoughts.

August 23, 2013 at 3:35 pm
(652) Janet says:

Bonnie;

I have ocular migraines too. Not often … maybe 8 times a year. I know they are very scary – the first one sent me to the ER. I saw an eye specialist and was told an ocular migraine aura that affects your vision is common. Visual symptoms are short lasting and everything was ok with my eyes. I am sure you had yours checked out. I hope they stop as I know they are very annoying.

I hope you are feeling better and on some thyroid meds.

August 23, 2013 at 3:54 pm
(653) Janet says:

Today is day 8 on Sandoz Levothyroxine and I am almost afraid to say I feel GREAT! I feel very alert and energetic and I am no longer falling asleep on my couch at 7PM. My brain fog is lifting and my appetite is normal and I am no longer constipated :) :) :)

Plus, I think all of that horrible Synthroid is out of my system now.

Cabro; I am definitely looking forward to day 10 and hoping it’s even better than today. When I pass day 10 I will feel very optimistic.

Anne; how are you doing on the Sandoz Levothyroxine?? Great, I hope :)

I hope everyone is doing well.

August 23, 2013 at 3:57 pm
(654) Glenna says:

Hey Everyone,

I see Dr. Ridha Arem in Houston. I believe I have posted his name on the blog before.

He is the Doc who prescribed the compounded T3, that works like a charm. However, while he will prescribe compounded t4, he really doesn’t like to use it.
He wanted me to take Tirosint, but it makes me feel numb, though everything else does too as my blood pressure is waaaaayyyy low.

Total bill for my last visit was $875. That included consultation, blood work and sonogram. I’ve submitted the bill to my insurance. You can charge the bill, too.

He is the doctor who helped me get well with levoxyl and SR t3, but there is not much he can do when the med we need is not made. However, he does prescribe Armour. He knows what he is doing if you have other underlying issues, too. I highly recommend him.

August 23, 2013 at 4:25 pm
(655) Imediject says:

Was wondering if anyone in the group is also taking b/p meds? I’ve been on Tenormin (beta blocker) for a long time, and the dose was slightly increased after I had a heart attack / stent a couple years ago. With all of this thyroid trial and error these past months, I guess it’s been the only thing on my mind, because a couple days ago I started having what I thought was a hyper reaction to the Tirosint. Headache, upset stomach, diarrhea, super dizzy, pounding pulse – the typical too-much-thyroid syndrome I’ve been going through for months. BUT, while my heart was pounding out of my chest, unlike other times, my pulse was only in the 50′s. Something wasn’t adding up, so I went to see my internist. Found out my b/p was all of 90/58, a little low even for me. AND, when you look at the side effect of too much Tenormin, they are headache, nausea, pounding pulse, diarrhea, etc. Hummmm. Turns out I need a little less Tenormin, not a little less Tirosint! :-) The doctor said Tirosint is in a thyroid med class of it’s own because of it’s high bioavailability, and even on a dose that’s only half of what I took with the Levoxyl, things in that department are continuing along smoothly!
Goes to show I need to keep my eye on the whole picture instead of concentrating on the blasted thyroid so much!! lol

August 23, 2013 at 4:44 pm
(656) Imediject says:

Karen – Filling out a ton of paperwork before seeing a specialist is pretty much routine with the doctors I’ve seen. We moved to TN two years ago and had to establish all new doctors, and I was shocked to see the paperwork hoops they put you through. I’ve even been asked by a few to sign forms that give them permission to do an HIV test if they were ever to come in contact with any of my ‘body fluids’. Consent for photos can be normal as well. My husband had a melanoma removed a year ago, and the doctor always takes photos of ‘bumps’ to see if they change. Doctors frequently write papers (including photos) for medical journals. They list them as a part of their ongoing education and include them in their resumes. Just a part of ‘PRACTICING Medicine’ these days. :-)

August 23, 2013 at 5:52 pm
(657) Karen says:

Imediect and Janet:

You are both right, of course. All these forms were new to me even with specialists. But, never having walked in the doctors mocassins, I have no right to make judgement. In today’s world, they have to protect themselves. but so do we as patients.

I do believe charging $100 for a cancellation within 24 hrs of apt is excessive. Within 12 hours and $50.00 refundable would be more reasonable. That would allow them time to fill the cancelled apt with another patient. If they are that good and in demand, that would not be a problem.

Oh well, I am retired and cannot change the world now. I did find another endo, however, right in my neighborhood. I only need F/U on the Erfa med which is working well. I got their before apt paperwork off their Web Site, it was only 2 pages and was just my medical history, ins info and signature . I feel more comfortable with that.

What impresses me the most is the wonderful and thoughtful response from you two. I am sure more will come. Thank you so much. Ask and Ye Shall Receive on the About.com Forum!
Wonderful group.

Bonnie, would you ever consider Erfa Armour? It is not at all like Forest Armour made in the U. S. which you said you tried. It is not expensive. I started with a 100 tablet bottle of 60 grain and it was only 33,99 + 9.99 shipping. It arrived 7 days after order.- Monday to Monday. That would last you more than 3 months. Just thinking…

August 23, 2013 at 6:01 pm
(658) pauline says:

Karen,

I did question my Endo’s decision to have me take an additional half a 75mcg on the weekends, and although my latest TSH would be regarded as within the “normal” range at 2.22, she still feels that I would do better with a lower TSH level. I will have a blood work done again in a month to see how that goes. On the whole, I am feeling ok right now on the Sandoz. Not feeling tired, and the constipation has eased.

Good-luck all.

August 24, 2013 at 11:29 am
(659) Imediject says:

When I saw my doctor, he mentioned a genetic test that is currently being done – and is covered by insurances – that can determine how a person metabolizes various drugs. Among other things, it would explain why drugs such as our thyroid meds work for some and not as well for others. And it would help doctors determine correct doses without so much trial and error. It’s called “Pharmacogenetic Testing” and I actually found a web site that gets into all the details and technical stuff. Most doctors should be aware of this by now, or they could certainly look in to it if your interesting in having it done. I was told it’s done by swab, so you don’t even have to go through getting stuck for blood. My doctor is getting all of the info together, so we can get it set up for my next visit in October. With me, it should bring some interesting revelations, as I was born without a part of my immune system, and I have strange reactions to Everything! :-)

The link is:

http://www.aafp.org/afp/2008/0601/p1553.html

And if that doesn’t work, you could just google “pharmacogenetic testing” and you’ll get a lot of hits.

August 24, 2013 at 12:29 pm
(660) glenna says:

Bonnie:

i am so sad to see that you are still feeling horrible.

I am still taking the compounded T4, started a new bottle on Tuesday and felt great for three days and horrible yesterday.
My blood pressure was really low 86/64 h/r of 64. Today I feel fairly good

While I am not completely happy with the compounded, it is better than most of the drugs I’ve tried. i have experienced a numbness in various extremities, but now wonder if that is due to low BP.

You might look into compounded meds if you haven’t already.
Did you say you were in Garland, TX or is that someone else?

I hope today is a better day for you. You are in my thoughts.

August 24, 2013 at 1:59 pm
(661) Carol says:

Glenna,

Re: the T4 compounded you are taking now – is it the same dosage as the Levoxyl was? I was on 50 mcg of Levoxyl for years. Now 75 mcg of Sandoz for the past week. I want to figure out what other option I have if the Sandoz doesn’t work out or the pharmacy can’t get it. The pharmacy generic is Mylan and they special ordered the Sandoz for me. I didn’t feel well on the Tirosint and then they doubled the cost.

What filler does the pharmacy use for your compounded? I get another compounded med from Wms International. They use olive oil. My endo won’t write for compounded (or Armour) but my primary will. I tried Armour a few years ago and it didn’t work for me – I am sensitive to the T3.

Hope you are feeling better today.

August 24, 2013 at 2:31 pm
(662) Bonnie says:

Kat- I hope you are doing ok, haven’t heard from you recently.

Janet- I’m not alone with the optical migraines (they can be terrifying). My eyes are so dry and burny at times. I blame Synthroid and the other drugs, that cause these symptoms. I get scared when I get too many if these migraines on top of each other. Used to be one every few months, (like you mentioned). All this stress of changing medications back and forth is hard on a person.
I don’t know if the Sandoz at a lower strength would work out for me. Supposed to take half if the 125 mcg, but it is way too strong and I don’t like the side effects. Afraid to try that again, we’ll see.

Karen- I thought about ERFA, but the anxiety I felt from Armour was unreal. I couldn’t tolerate a quarter of the 90 mcg, let alone a half if it. The inactive Ingredients really were horrible too (white burning tongue with ulcers was just one side effect). I won’t discount your suggestion having never tried erfa, as it is another thyroid med. I have reservations with added t3, when doctors don’t even test that (mine didn’t) to see where that stands. This whole ordeal is such a nightmare trying to find an alternative. I’m glad you are doing well on the medication, that’s great to hear.

Carbo and others- it is always good hear your input and how you are doing. What a caring group of people.
I draw strength from everyone here. <3

I have specific questions for Glenna about your compound, which I’ll address in another reply after lunch out with hubby.

August 24, 2013 at 2:45 pm
(663) Karen says:

Carol:

I mentioned a compounded pharmacy in Wisconsin on Post 650 that has a wide selection of fillers incuding organic brown rice flower for highly sensitive patients. I tried the compounded T4 with olive oil from Wmns Intl and the filler was too antiinflammatory for me. I could taste the oil. W. Intl has a selection of other oils like canola, peanut, apricot – a total of 20- OR you can send them the filler you want them to use. (In case you did not know that). I used the same dose I had on Levoxyl with each of 3 compounded I tried. One trial had microcrystalline cellulose and the other had vit C powder. I have heard others upping their dose on compounded. I have heard 2 endos say that compounded is not consistent.

To get list of compounded phar. in your area key in “compounding pharmacies” on your Internet Browser and you will get sites who state by state will direct you . I would think that being so close to NYC you would find another pharmacy that carries Sandoz. Do you have a Sav Mart there?

I tried the Forest Armour and it did not work. I am on the Erfa Canadian Armour and it is much better. I has a little less T 3 in it than the U. S. Armour . Post 482 has info on Erfa and other dessicated. No one should jump right into Armour. You need to start with 2/3 dose and work up slowly after 2 weeks so the body adjust to direct T3. One 60 grain tablet is equivalent to 100 mcg synthetic T4.

Imediject: I will ask my doctor for that test. Thanks!

Glenna: Any chance your endo discussed the Erfa? Curious …

August 24, 2013 at 4:39 pm
(664) Karen says:

Bonnie: The Erfa Armour from Canada has only magnesium stearate( less amt than in Levoxyl) , cornstarch sugar and talc in very micro amounts per pharmacist. Totally different from the Forest Armour.
It also has 35 mcg T4 and 8mcgT3 in 60 grain tablets, equivalent to 100 mcg synthetic T4., less than Forest Armour. Erfa has T4 and 3 in lower ratios. I forgot what the Forest Armour had as inactive ingredients, I will check and post that in a minute.

I hope you have a nice lunch with your husband. And sincerely hope you feel better and can get to something consistently. We all want you well.

August 24, 2013 at 4:59 pm
(665) Karen says:

Bonnie:

Inactive ingredients in Forest Armour:

Dextrose Anhydrous(makes the tablet stable)
Microcrystalline Cellulose(in 2009 the amount was increased)
Sodium Starch Glycolate
Calcium Stearate(a triple whammy cancer toxin on CA Prop 65- coats pill to make it slip through machine faster)

Opadry White(adds color but is not a dye- it is a mineral filler)
Polyethylene Glycol
Polysorbate 80
Hydroxypropyl
Methycellulose

No T3 is “added” to tablet. This is the naturally occuring ratio found in thyroid porcine dessicated powder. Forest Armour has a higher ratio of both T4 and T3 compared to Erfa. Erfa has NO dyes.

August 24, 2013 at 5:12 pm
(666) Carol says:

Karen: Thank you. No Sav Mart here. I use Target as my only local pharmacy for years. I’m hoping they will continue to order the Sandoz for me but I wonder if there will eventually be an issue with that, too, like the Levoxyl. Suddenly recalled. Or there will be a shortage. Or a formula change. I want to learn as much as I can about the compounded T4s and what works for others so I can consider that as an alternative.

August 24, 2013 at 7:13 pm
(667) cabro says:

Karen, I think those forms cross the line for an endocrinologistThe only time I was asked to give permission for a photo was for a surgical procedure. That surgeon has his own clinic with a private surgical center on the top floor of a medical professional building, and he had the most forms I’ve ever had to fill out or sign off on. Maybe that endo has an independent practice and plans to publish. That’s just a guess, though. Glad you found someone nearby.

August 24, 2013 at 7:15 pm
(668) cabro says:

Yay, Janet! I hope it continues. Please keep us posted. Very encouraging.

August 24, 2013 at 7:37 pm
(669) cabro says:

Imediject: The test sounds very interesting. I’ll be curious to see what your results are. I react badly to all kinds of meds. Basically, if they came on the market after about 1996, I have to be v-e-r-y careful. I’ve had some bad problems/intolerances. My immune system got whacked really badly when the new Penicillin saved my life in 1954 but caused hives from head to toe after 2 days. Five years later, I had anaphylaxis to a tetanus booster. I would love to not only see how my immune system is damaged but also how to avoid problems in the future. Keep us posted!

August 24, 2013 at 7:41 pm
(670) cabro says:

Karen,

You posted about Erfa, “It also has 35 mcg T4 and 8mcg T3 in 60 grain tablets, equivalent to 100 mcg synthetic T4., less than Forest Armour. Erfa has T4 and 3 in lower ratios.” I could have sworn the 35/8 formula is what my doctor used to calculate my Armour dosing. Could you post both of them again for me? Thanks.

August 24, 2013 at 7:47 pm
(671) cabro says:

Karen,

Is there any site that rates compounding pharmacies nationally? I am not able to go through 50 states with individual ratings to find the best one for me. And I am not limited to using one in my state. If we ever go with compounding, I would like to use one that is rated tops in the US. I heard good things about one in NH a few years ago, but now I can’t find it. I would be curious to see if it would get a high rating nationally and thereby help me remember it! Thanks.

August 24, 2013 at 11:16 pm
(672) Karen says:

Cabro: I do not know any site that rates compounding pharmacies nationally. I will look into that tomorrow and Monday. Perhaps one of my compounding pharmacists in San Diego would know this. I can also check two compounding pharmacies in Wisc, women’s Intl and one in Milwaukee area. I will search the Internet to see what I can find.

August 25, 2013 at 2:32 am
(673) cabro says:

Thanks, Karen, for helping me out with compounding pharmacies. If I can find a top one, hopefully it will make a difference for other patients as well as for me. I will be on my leftover Levoxyl until it either runs out or it loses potency.

And thanks for the info about Erfa vs Armour. They are similar but with NDT it is important. I’ll try again to find the page where my endo wrote the values he was using. I shouldn’t trust my memory.

August 25, 2013 at 11:32 am
(674) Imediject says:

Carbo – regarding the pharmacogenetic testing – I have “selective IGA deficiency” which simply means the IGA part of my immune system has been missing all my life, but the rest are pretty normal. I have a long list of meds that I can’t take, discovered by the ‘try it and see what happenes’ method. It would really be great to take a genetic look at how I metabolize certain drugs, and why some work while other’s don’t. A side note is that many, many people have an IGA deficiency, but it never bothers them that much. Like an autoimmune disease, there’s something that clicks it into gear. Mine was discovered when I was diagnosed with Systemic Lupus in 1990 – which was probably the trigger. Another side note – when I had such a bad reaction to Synthroid, I did a little research and found out that folks with IGA problems are more likely to have a bad reaction to the filler acacia – which is a tree/plant, because of allergy issues. Now that I think about it, I think I’m going to call the doctor and see if we can do the testing before October. I’m tired of the ‘guinea pig’ try a drug routine! :-)

August 25, 2013 at 7:07 pm
(675) Karen says:

Ed:

W e have not heard from you in more than a week I believe, did you ever get your endo apt? How are you doing?

August 25, 2013 at 8:03 pm
(676) Bonnie says:

Hi everyone,

I have been busy with hubby this weekend looking for chairs for our bedroom and hubby bought me a tablet with larger print, although I’m fumbling with it. I’ll get on tomorrow and reply more. I did read all the replies posted.

August 26, 2013 at 3:01 am
(677) cabro says:

That’s very interesting, Imediject. I don’t know if that could explain my life-long history of allergies and dramatic reactions. Something to look into.

August 26, 2013 at 4:25 am
(678) Michelle Scott says:

Have been on levoxil for 8 years 125 mg. what an amazing drug it was. Now I’m on synthroid and Im living a nightmare. I’ve had lose bowl movements ever since the doc put me on cipro and this crazy drug.. Thought I really was losing my mind. Took myself off of the cipro because I thought it was making me feel bad. But no it’s the yucky synthroid. I suffer from migraines anyway. And instead of 1 or 2 in a week it’s almost everyday. I feel like I’m dying a slow death. I have half a thyroid left. I had breast cancer in 2004. And am a survivor.:) I called my doc he said the meds are the same. Yea right.he must think its in my head.ive got blurred vision.dont go to sleep till 5:00am I can’t focus on anything.
.heartburn city lives in me all the time. No appetite . And this is in my head. I need help. Can I just stop taking this crap???? I’m so glad I found this site. Michelle in fla.

August 26, 2013 at 10:05 am
(679) Karen says:

Michelle:

I am so sorry you have had such a bad experience on both Cipro and Synthroid. A lot of people on this Forum, including myself, have had a negative experience with Synthroid. Please do read as much of this Forum that you can. There are other alternatives to Synthroid, including Sandoz levothyroxine, Tirosint, compounded levothyroxine and porcine dessicated thyroid med. What works for one however, may not work for another. The most complained about meds are Synthroid and Mylan brand T4. Inactive ingredients in thyroid meds are mentioned in posts 562/3/4. Post 482 has great information on the porcine dessicated.

I have also had exposure to Cipro and Levoquin, and recently learned that the FDA has issued another warning about the quinolone drugs in that they could cause permanent nerve damage. The first warnings came out in 2008 when the FDA required that these drugs be labled with a “black box” alert, which is the strongest warning issued by the FDA. I learned of a serious repeat warning last week that had just been issued earlier in August. This class of antibiotic I would definitely stay away from. If it were me I would ask your doctor about another antibiotic or not take one at all if the infection is not that serious and tell him/her about your reactions especially if you have had previous exposure to the drug Cipro. I am interested in hearing other comments. We have a wealth of information from posters on this forum.

August 26, 2013 at 12:28 pm
(680) Michelle Scott says:

Thank you Karen. Just called my doctor . I think the cipro and the synthroid is not a good combo for me. I just want to feel normal again . I feel like a zombie. I didn’t take a synthroid today , and I feel a little better. I’m waiting to see what he is going to put me on next. Feel like an experiment to these doctors. Thanks again I will keep you posted.

August 26, 2013 at 1:37 pm
(681) Janet says:

Hi everyone,

Day 11 on Sandoz generic levothyroxine and I am feeling GREAT!!!

I even had coffee today and I am still feeling good :)

I am sure all of that Synthroid is out of my system by now and hopefully this is going to keep working for me. I will have to increase it soon but I have high hopes.

How is everyone doing?

Bonnie … have you seen the Doctor yet??

August 26, 2013 at 1:40 pm
(682) Karen says:

Michelle:

You might check out these Web Sites on May Shomon’s About.com:

-Attention Thyroid Patients: Is there Gluten in your Synthroid?

-Acacia and Lactose In Synthroid Can Cause Allergic Reactions

August 26, 2013 at 1:48 pm
(683) Janet says:

Michelle …

Please don’t let anybody tell you it’s all in your head.

Synthroid made me feel so sick!!! I had horrible headaches, stomach aches, I was so constipated and was so tired. I was also VERY congested. I felt like I had a really bad cold the entire time i was taking it. 2 days after I stopped taking it I felt better.

I hope you find a good thyroid medication. Levoxyl was so perfect from day 1 and I was taking it for 12 or 13 years. This is very hard but I am doing great now on the Sandoz levothyroxine. I am sure you will find the right medication.

Hang in there :)

August 26, 2013 at 3:27 pm
(684) Michelle Scott says:

Thank you Janet. It’s nice to hear you are doing well. I’m hoping I will be soon too. Yes I am congested too. But I have the bathroom runs instead. The confusion is awful. And the constant staring into space like I’m a freak. Just want to be me again. Want my life back. I’m waiting for the phone to ring. Thanks again Janet and to everyone on this site.

August 26, 2013 at 10:23 pm
(685) Carla2013 says:

Hi all. Been on Sandoz generic for 6 weeks and am feeling almost Levoxyl good. I’m now back taking the vitamin, minerals and herb I took before Synthroid. That stuff had me so messed up I had stopped taking everything BUT Synthroid. I was just too afraid something might be affecting the Synthroid and adding to the miserable way I felt. Plus it made me so goofy I doubt if I could have remembered to take supplements anyway. LOL

For anyone still feeling tired or low energy, have you tried B12? I had forgotten how much it helped my energy level. Doesn’t make me nervous or shaky either. The best B12 I’ve used is made by NOW. It’s a liquid. I’ve tried other B12s, including a liquid also made by Now called Ultra B12. I bought it once not realizing it was different than what I usually take. It was nearly as good. But then I’ve tried B12 pills and dots you dissolve under your tongue as well. Nothing has worked as well as Now’s regular liquid B12. I love it.

Being back on the multi-mineral formula I take in the PM helps me sleep soooooo much better. I take D3 with that too.

I’ve added K2 (MK-&) made from natto (soybeans). This form of K is supposed to make sure the calcium goes to the bones, not into the arteries which it apparently has a tendency to do. K1 is said to thicken blood, but from what I’ve read K2 studies show it does not. Guess I’ll see how it works.

Karen do you know anything about K2 (MK-7). Does anyone have comments on it? Anyone take it? I know there is synthetic MK-7 for people that can’t take soy too.

It’s good to feel good again! I’s so happy for those of us that are feeling better, and sad for the people that are not there yet. Hang in there and keep trying. This forum is such a help to us all. We have a place to laugh, cry, vent and share! Thanks to everyone.

August 26, 2013 at 11:39 pm
(686) kat says:

Dear Bonnie and everyone who has been so helpful and supportive. You all are really giving me hope about the Sandoz “levo.” My computer has been acting up. My friend and “adopted” son is making me a new computer brain. Should see if he could make a repica of levoxyl and a new brain for me. I have been feeling sad and scared over this levoxyl “mess”. However, I will continue to make phone calls, and send my letter to Oprah and pester the FDA. Do you all really believe that levoxyl will ever come back ? Part of me does and then the skeptic in me is doubting. It probably is just my mood. Again, so grateful to all of you. Keep you updated on any progress or information I receive.

August 27, 2013 at 12:20 am
(687) Karen says:

Carla:

Not at all familiar with the multiple numbers of vit K only that Vit K3 is synthetic and to be avoided. I would ike to know more. I remember being warned not to eat high Vit K foods after heart valve surgery as I was on a blood thinner, Coumidin, for a few weeks and Vit K helps with blood clotting, not thinning.

Very good news about the Sandoz. Good to take extra B12 – I think some of the inactive ingredients in many meds could diminish that Vit in our bodies.

I have at least ONE great big salad a day, with either Kale, Spinach or Romaine and or plain lettuce to get my Vit K. I have learned to limit the raw spinach, kale, cabbage and other crucerferous veggies and eat more cooked cruceferous to avoid their interfering with levothyroxine absorption. Kale and other leafy green vegetables are very high in vit K as you know. I used to supplement with the Vit Bs but have neglected to do so in the past weeks of low thyroid but reading your message will remind me to do so. I have never taken a supplement of Vit K. Is there an accurate way of testing Vit K in our blood?

August 27, 2013 at 2:14 am
(688) Anne says:

Janet:

Thanks for your concern. I’m still doing good on Sandoz Lev. after 5 weeks. Lacking some energy but I can live with that until Levoxyl comes back. Glad to hear that you are also doing great.

Linda:

I live in Orange County, CA. and ordered Sandoz from Rite Aid. They got it for me within 2 days. Wish you luck!

August 27, 2013 at 2:52 am
(689) cabro says:

Hi, Michelle,

I’m so sorry you are going through so much with Synthroid. I, too, felt like I was dying a slow death for 2-1/2 months. When I got off of it, I was ready to just skip the meds altogether for a while until I could be seen, even though I have no thryoid (thyroid cancer). After going off of it, it took me a week to feel better, but I did feel noticeably better one week to the day, particularly getting rid of that awful sluggish, toxic feeling and the heavy brain fog.

On one particular occasion, I had yet another bad experience with the combination of thyroid meds and antibiotics. It just so happened that I was due for my thyroid lab levels when I was about 2/3 of the way through the 2-week antibiotic. Both my T3 and T4 were completely off the charts. Very high, and dangerously so. It seems that the antibiotic strips the lining of the colon. Then the Synthroid (or any thyroid med) is absorbed at a significantly higher level. I have gone through this so many times unknowingly and been almost suicidal because of the combined effects. When my endo saw my numbers that time and I mentioned that I was miserable on an antibiotic, you could see it all click in his head. He knew exactly what the problem was.

(continued….)

August 27, 2013 at 2:55 am
(690) cabro says:

(part 2….continued)

Now that I know what it is, I manage my thyroid meds myself if I have to take an antibiotic, but I don’t recommend that anyone else do that unless you have documented the high free T4/T3 and are able to figure your own symptoms out.

For now, I would try to get a free T4 and free T3 run ASAP to get a clear picture. TSH is probably not responding yet. If it’s been more than 12-14 days, though, your T4/T3 levels may have come down enough to help you feel better and start getting some sleep. I’m so sorry about the diarrhea, too. I’ve been constipated with thyroid disease for too many years….BTW, if your endo won’t let you get tested, ask your Primary Care doctor to run it.

I hope things heal up from the effects of the Cipro. I would take probiotics twice a day to try to get things back in balance. Honestly, I think skipping that dose was a good thing, but it is not something you can repeat very often unless you have to stay on the antibiotic. My situation was a year ago, and I’ve forgotten completely what my endo had me do dose-wise but I’m sure he had me make some temporary adjustments.

I hope you can get through to your endo about how difficult these fillers can be for us and try another one. Feel better!

August 27, 2013 at 3:33 am
(691) Michelle Scott says:

Thank you so much. Cabro: I’m so glad you got through this. I will too. My doc didn’t call. Hope he does tomorrow. I am not taking anymore of that poison. Anything natural I can take till I get back on a medicine.im sure I will be crashing tomorrow. The fog is doing better. I can’t remeber what I did last week. Had to ask my roommate. And to think I was driving around in car. Wow scares me.thanks again. I will let you know what he puts me on.

August 27, 2013 at 10:56 am
(692) Karen says:

Carla:

While on the subject of Vitamins , I forgot to comment on calcium.
After my heart surgery I did extensive research on Calcium. The first thing I learned is that for every opinion that calcium supplements go right to the arteries, there was an equal and opposte opinion that they did not. It is a highly controversial subject.

Sooooo, I make sure I get the right amount of calcium in my diet. My goal is 1200-1500 mg per day. There is definitely SOLID research that documents that dietary calcium never goes into your artieries. I get it in skim milk, yogurt, and high calcium vegetables. Some cannot tolerate milk. I have been on skim milk since teenage years.
Never smoked, never drank.

Most recent bone density test was normal. The best most recent test: I fell from a ladder 5 feet onto cement and did not break a thing, only my confidence in going up a ladder again. My CRP is bottom normal, and that is realy a good indicator that one has no build up in the arteries. Also the lower number in your blood pressure is an indicator. Higher the bottom number above normal, greater the chance there is arterial build up. More and more research shows that inflammation is the culprit and low CRP indicates low level or no infllamation. Maybe you know which of the supplements is published as safer? Calcium citrate or carbonate? I do supplement with magnesium citrate powder on a daily basis making sure I get at least 1000 mg a day. Good for the heart and helps with B/P as well.
My grandmother always used to say, if you have low blood pressure take potassium and magnesium. Long before mainstream medicine that rarely checks for red blood cell levels of magnesium anyway. Serum levels don’t tell a thing.

August 27, 2013 at 1:30 pm
(693) Karen says:

Correction: If you have HIGH blood pressure, my grandmother said to take Potassium and Magnesium.

August 27, 2013 at 8:21 pm
(694) Karen says:

To All:

I stongly recommend all readers of this forum sign up for the free thyroid disease newsletter by Mary Shomon which comes only once a week – usually on Tuesday. Todays letter is very informative. All the letters are good, but today’s had pertinent info on thyroid cancer.

See top of Forum on right side to sign up.

August 27, 2013 at 10:18 pm
(695) Stacey says:

I have been on Levoxyl for 17 years, after a thyroidectomy because of Graves disease. I have had to substitute Levoxyl at least 3-4 times thoughtout the years for a few months for odd reasons, forgetting meds on a trip ,childbirth (gyno presib -synthoid instead etc) and hated it everytime.
In July I refilled my script and was just given synthoid with no explaination other than Levoxyl was recalled, I thought it would be a few weeks. WTF!!!!!! Now after a month hair loss, weight gain, mood swings, digestive problems, foggy brained!!! I know its the Synthoid. Really we live in the USA and you can’t get a replica of Levoxyl. I am so confused.
I am going to try Swiss made brand T – something.
After reading this blog and hearing from all of you, still really do not know how I can help. Like all of you. I just want Levoxyl back ……It Works…… I am really nervous its not coming back ;(

August 28, 2013 at 12:00 am
(696) Michelle Scott says:

Well went to doc today.put me on Tirosint.we will see what happens. Wow can’t believe I’m not crashing yet.start pills tomorrow.i can think straight today. And got a surge of energy tonight.and no meds in a couple of days. No more synthroid for me. Evere!!!! Talk to you all in a few days.

August 28, 2013 at 1:33 am
(697) cabro says:

Karen, I subscribed to Mary Shomon’s email. It shows it is “already activated” but I don’t get the messages. I didn’t get today’s and it’s not in Spam. Odd. I would have liked to have seen today’s…… I can’t unsubscribe and resubscribe, either, since I never got a message. Ah, well…..such is life.

August 28, 2013 at 1:37 am
(698) cabro says:

Michelle, it sounds like your dose was too high, but the proof would be in a free T4 test results possibly alongside TSH. Free T4 is the more reliable once you are on T4. Be careful with Tirosint. There is plenty of information online that it is absorbed at a higher rate (no fillers) and people need to start on a lower dose. Good luck and I hope you continue to feel better.

August 28, 2013 at 8:08 am
(699) Karen says:

Cabro:

Re: post 707 – I will post the link to her message here on Forum for you each Tuesday.

The new message link is :

“About Thyroid Disease: Lung Cancer Risk, Thyroid Cancer Conference” which you can key in on her search engine above.

I have a friend who is going to try Tirosint. How much of a lower dose do you think she will need? I will have to go back and read again the info that Imediject put on the Forum as well and am going to forward the link to info to this friend. Tirosint is averaging about $90 for a 28 pack of .175 mg in this area. The pharmacists I have asked have had no idea about its high potency. What is going on in this country?

I am waiting to hear back from Women’s Intl Phar regarding how to get rating on compounding pharmacies. I left a message with them Monday. I will let you know…

August 28, 2013 at 8:18 am
(700) Karen says:

Stacey:

As you have probably read here, you are not the first to have had trouble with Snythroid. This is getting too much. Synthroid should be the med off the market – it has made so many people very sick, including myself.

The Swiss made med you are probably referring to is Tirosint, many on this site are using it, and there is a concern that one should use a lower dose than you did with Levoxyl because Tirosint is so readily absorbed. Keep us posted Stacey.

Michelle: Keep us posted as well.

August 28, 2013 at 12:02 pm
(701) Bonnie says:

Hi everyone,

I need comfort and support.

I had my TSH done Monday and it came up a little from 14.89 back in June to 14.32 for August (now).

I talked to the nurse in the office who recommended per the doctor that I take 75 mcg of Synthroid. I told them how Synthroid gives me suicidal thoughts at times, the migraines, jitteriness, anxiety, crying, etc. and that would be my last resort. I also told them about the Sandoz in a smaller dose, but the doctor wants me to take the Sandoz (3/4 of the pill in the 125 mcg). the nurse never heard of Sandoz, so they forgot I had this drug. I took a small amount again yesterday and it felt too strong right away. I have no anxiety from Sandoz and my eyes were clearing up (from that red puffiness and irritation on Synthroid). However, my pulse was 90, and I automatically dry heave when medication raises my pulse and I was getting that strange headache at my temples into my left jaw. By last night I started to hurt all over. My neck, shoulders and back were extremely stiff. I woke up at 3 am really hurting physically. This morning I took a little of the Synthroid 125 instead of the Sandoz. I don’t know if a smaller dose in Sandoz (75 mcg) would be better or not. My skin, hair, entire body feels so horrible. I know the doctors think the reason to feel this way is the TSH being high, but I disagree to some extent.. These medicines have been much harder on my body then the Levoxyl I was taking (I know I’ve said this lots if times). So, I guess I try one of the lesser evils and try Synthroid in the 75. I really hate all of this!!! I tried to see another endo and he isn’t taking new pts. so other then contacting this other dr. To try another compound, I am back to square one.

August 28, 2013 at 12:08 pm
(702) Carol says:

Michelle (#706) Re: Tirosint

Not sure if you knew this – you can get the first month Rx of Tirosint for free. There was a coupon on their website. I got a 28-day supply at my pharmacy for $0 by using the code.

Hope it works for you.

August 28, 2013 at 1:03 pm
(703) Karen says:

Hi Carol:

I just got on the Tirosint Web Site this morning to help a friend and they do not have the free 30 day trial offer any more. Disappointing. Only a $10 off coupon. Last May I got the 30 day trial coupon for myself, but it is history now. Tirosint is getting so much more business from former Levoxyl people, they don’t need to offer a free supply.

How is the weather out New York way? We in San Diego are very hot lately with high humidity with prevailing winds coming from the south. Awful! We can see some of the smoke from the fires in Yosemite way to the north. I have friends in Reno who say the smoke is terrible there.

My we are getting more and more new people just learning that Levoxy is off the market. The manufacturer promised me that it WAS coming back.

August 28, 2013 at 1:12 pm
(704) Karen says:

Bonnie:

I think you would be so much better on Sandoz. With a TSH of 14+ one cannot really think and analize as well as I am sure you are aware with your extensive medical background. The acacia is a killer in Synthroid. Remember the Synthroid symptoms that you and others have had. I had them as well so I walk in your mocassins. Please just try with all your might to stay on one med hopefully the Sandoz until your levels are normal. Are you taking vitamin supplements? Hope so. Wish I were closer so I could help you.

Are you near Houston? Maybe you should try Glenna’s endocrinologist. I understand he is very very good. If it were not for the distance I would go to him myself. He does not file with insurance, so you have to pay up front and then your insurance will reimburse. A bit of an inconvenience, but not an impossibility.

Keep us posted. Feel better soon.

August 28, 2013 at 1:34 pm
(705) Carol says:

Hi Karen,

Thank you for the update about the Tirosint free trial coupon being discontinued. I had hoped that would benefit Michelle. I have been where she is and the Tirosint is expensive. Pharmacist was shocked that they doubled the price.

Here in NY, It is a little above 80 and very humid. We haven’t had any hurricanes yet so I’ll take this. There were predictions for some severe ones to hit in 2013 and so far it’s been quiet.

I hope you are safe with the smoke. What can you do to protect yourself?

August 28, 2013 at 1:48 pm
(706) GLenna says:

Hi everyone,

Carol – I am on the same dose of compunded as Levoxyl 62.5
The myocell, which seems to be a milk based product though I am not certain, is a slow release product.

I could not do Armour due to the high content of T3, but the compounded T3 I get is also slow release so I don’t feel like I am speeding and then crash in the afternoon. I highly recommend it, but only from Piney Point pharmacy, as I’ve tried other pharms and it was horrible.

Fortunately, I have felt really good the last four days. Thank God!!!

Bonnie, If you are in Texas, or really any place else, I highly suggest you go see Dr. Ridha Arem in Houston. He actually believes people when they tell him meds cause them horrible issues. He could help you and it relatively easy to get in to see. Do yourself a favor and look him up.
Synthorid gave me suicidal thoughts, big time.

Everyone, if you are not taking good supplements you really need to start, NOW!!!

Sorry if I missed anyones questions.

My love to all!

August 28, 2013 at 1:59 pm
(707) Bonnie says:

Glenna- re: compounded t4

I will probably have to use the same pharmacist as before but I want to collect as much information as I can.

I know Karen has put a lot of info on fillers, and both of your input is appreciated since you both have experiences with compounds.

The pharmacist that did my last compound said the filler will always be 60% mycrocrystalline cellulose which is avicell right? Your sustained release is myocell? Is your capsule a certain size? I would like a tiny capsule, but that might not be an option. A small pill or troche sounds better to me, but its not an option. Since you and I take the same dose with Levoxyl what other ingredients (if any) are in your compound other then the levothyroxine and filler? Do you have any burning in your eyes, thrush with dry tongue, heartburn, numbness, red, burny or itchy skin from your compound? I am asking to determine whether its worth it to try this again with sustained release. Since I had a fast acting capsule, I didn’t know if this would make a difference. Like you, I am a light weight and medicines effect me pretty fast. I am also highly allergic to so much anyway. The last compound gave me all these allergic reactions (first capsule ingredients mixed in water to drink). The pharmacist said it was an allergic reaction in the GI tract. I was red from my esophagus down my body with streaks on my face. It was hypoallergenic and I reacted to it. I wished I could do trial and error with the different compounds, but I don’t think this one lady dr. Uses anyone but this pharmacy. Any advice from your experience would be helpful. I would like to get my TSH stable, but the medicines are keeping me from taking much, which is a problem I realize. I hope you are feeling well and school is going well for you. :)

August 28, 2013 at 2:14 pm
(708) Bonnie says:

Cont’d.

Karen: that organic brown rice filler sounds interesting.
I wished I could try different things till I found the right medicine. Unfortunately no one us going to keep writing me out scripts to keep trying things and my endo doesn’t work with compounds. It’s hard for anyone to understand unless they can see inside of us to know what is happening. Thyroid can be a very tricky thing to balance.

While hubby works and until I get this thyroid mess behind me, I feel like I need a comforting friend to go with me to appts. and to be there when I take a new med. I feel pretty needy lately. I wished one of you caring ladies lived near me.

Glenna wanted to know where I live. I live in FL.

August 28, 2013 at 2:44 pm
(709) Bonnie says:

We were all responding at the same time. I don’t want to loose touch with any if you so I would like to leave my phone number if it is allowed. Something happens to this blog and I’ve lost some great friends (a devastating thought).

I wish I had your compound pharmacist Glenna and I wished I lived near all of you ladies. Would LOVE that.

Sandoz and Synthroid are both hard in me, so I have to decide at a different dose and if my endo agrees. I am not into suicidal thoughts. That becomes a problem. I worry about everything with good reason. Hard to forget Levoxyl and how healthy I felt taking it over the years, especially with this struggle over meds.

I wished I had Mom Karen to help and take care of me, yeah… At this stage it would be a welcome God sent thing with helping, caring friends. <3.

I am Bonnie Deitz-Benner on Facebook. I will leave a phone number if allowed.

August 28, 2013 at 4:08 pm
(710) Karen says:

Bonnie:

I believe the number 3 capsule for compounded scripts is the smallest the compounded pharmacies use . Per my pharmacist at Good Pharma in San Diego, he said that size 3 capsule would have 125 mg of Avicel, ( microcrystalline cellulose). This pharmacy also can use Vit C USP powder as filler, same 125 mg.

Glenna’s pharmacy only uses Avicel or Myocell as filler for T4 compounded. I know becasue Glenna gave me the telephone number and I called her pharmacist to get information for me about a month or two ago. .

If your pharmacist only uses the Avicel as filler, I would think it imperative for your doctor to allow you to use another pharmacy. Actually I don’t believe she has the right to tell you WHAt pharmacy to use. You have the legal right to try other fillers, especially with your sensitivity to what you have tried. You can always sign up with a second primary and use as a back up. I went into an Urgent Care Clinic once and got a script for what I wanted one time. My primary was on vacation at the time.

Compounded pharmacies only do capsules, I have never heard of one that does “pills”.

I did not know you lived in Florida. I just spent 6 years there near Tampa. Rented my home here in SAN and just got back in June of 2012. I found a Bonnie Dietz on FB, but no Bonnie Dietz Benner. Will check again later.

August 28, 2013 at 4:34 pm
(711) Karen says:

Bonnie:

I had to go back to post 320 to find out what filler is used in Glenna’s compounded. It is Methocell which is a water soluable filler from pine pulp. I may have mistakenly used the term Myocell sometime in the forum . Sorry.

Glenna gave me the telephone number of her pharmacist and I called to get information on what fillers he used at that pharmacy for my own information. There were two: Avicel, and Methocell.

The compounded pharmacy with the most selections was the one in Wisconsin . They used organic brown rice flower for their sensitive clients. I am tempted to try them myself but not until I find out how they are rated. I am having side effects from too much T3 on the Erfa which has taken almost a month to show up. Disappointing! but not willing to give up yet.

I will have some more laugh medicine for you two gals, Bonnie and Glenna by the weekend.

Mom Karen

August 28, 2013 at 4:40 pm
(712) Bonnie says:

You know I have to use my iPhone to type everything as my new Tablet isn’t letting me comment (have to have that looked at).

I am Bonnie Deitz-Benner (not Dietz, but Deitz) in Sarasota, FL. That should help. The hyphen is between my maiden name and last name. Look forward to seeing you on FB

Will comment more later.

August 28, 2013 at 4:43 pm
(713) cabro says:

Karen, What a helpful reply! Thank you for posting yesterday’s email topic. I look forward to reading.

You are so kind to do the research for me on compounding pharmacy ratings. I am new to compounding, and I got bogged down and couldn’t seem to get anywhere, so I do appreciate your help.

Re: Tirosint and your friend. It depends on whether she still has her thyroid or not, what T4 she is on right now and what her T4 dose is, not to mention her own body’s sensitivity and absorption. I was on an equivalent dose of 106 Levoxyl when we tried 100 Tirosint. My TSH tanked from .262 to .007. We lowered it to an equivalent of 94 (alternating doses) but I had to completely bail out after two weeks on that because of the gut burning that began on 100 as well as the hyper symptoms. The PA had said when we started that I would probably need 88, but with my history we had to decrease slowly. Of course, we never got there. I think 88 would likely have been good if I hadn’t had the gut burning that went away the day I stopped taking it. But everyone is different. I also take Cytomel. Since it has become so outrageously expersive, I wouldn’t have been able to continue with it,

August 28, 2013 at 5:14 pm
(714) cabro says:

Karen – for Bonnie on FB, check your spelling for “Deitz.” And you have to enter the hyphen. She’s there!

August 28, 2013 at 5:50 pm
(715) cabro says:

IMHO, with Levoxyl off the market and only inferior products remaining, Tirosint is bilking the system, with the hapless consumer as the victim. A price that has suddenly doubled is outrageous and certainly opportunistic. The reps in my area ramped up their doctor visits late winter and spring and were doling out samples like mad. I had 3 boxes of samples before I had to throw them away. I’m surprised by their sudden and heavy presence, like they were waiting to pounce. Since I’m not on it anymore, I’m not so motivated to complain to anyone. But something is fishy. Synthroid is certainly benefiting, too.

August 28, 2013 at 6:12 pm
(716) cabro says:

Karen, I’m frustrated. I simply can NOT find the article/message from Tuesday! Grrrr…I’ve tried all over the About.com site as well as google. This is crazy.

August 28, 2013 at 6:13 pm
(717) Karen says:

Carol:

We are not near any of the Yosemite smoke. To protect yourself you stay inside. If you go out, you use a mask or cover your face with a cloth.

The worst fire in CA was in 2007. All of San Diego County was evacuated. In Rancho Bernardo, 300 homes were destroyed. I was in FL and my home was in between renters.

My brother called me from CHI and told me to turn on the TV, all of San Diego was on fire! It was five days before I knew my house had not burned.

On Friday of that week I received a call from a distraught young woman from CA. I had to tell her after 2 minutes to stop, take a breath and relax. Her elderly parents and her own family were evacuated from their home with minutes’ notice. They all ended up on the BEACH for 5 days.

I did not take any background info, no credit check, I just told her the house was theirs to rent and where to get the keys. She cried.

By Friday midnight they were in. But there was no hot water. I called H Depot and got a new water heater STAT. By 2A the new renters had their hot showers, the first in five days, and then collasped to bed.

They lost every thing in the fire. The next day hundreds of people came by the house with supplies, house furnishings, money, cards, and meal vouchers. I cried.

It was days before FIMA got involved. This was San Diegans helping San Diegans. Before the first fire victims arrived at San Diego Stadium for shelter there were hundreds of volunteers there . They were also at the beeches. The SD Humane Society was there -all pets were lovingly accepted.

So there is a diversion from thyroid for the moment. I am very grateful for my blessings and very proud to be a San Diegan.

August 28, 2013 at 6:26 pm
(718) cabro says:

What an inspiring story, Karen.

August 28, 2013 at 6:27 pm
(719) Karen says:

Cabro:

Lets try this:

http://thyroid.about.com/b/2013/08/14/italian-study-says-thyroid-drug-may-increase-the-risk-for-lung-cancer-does-it.htm?nl=1

grrrrrrr – I cannot see as well as I used to! Hope this works on one article.

Thanks for correct spelling on Bonnie’s name. I put the other title I gave you in google and 2 of about.com sites came up that were in message.

August 28, 2013 at 7:28 pm
(720) Katherine says:

I was on Levoxyl for ten years with no problems. When I switched to Levothyroxine, I got a rash all over my face and neck. I found an old bottle of Levoxyl and the symptoms went away, but of course I couldn’t get any more, so I tried Synthroid which caused another terrible rash and added photosensitivity. After reading this forum and others, I switched to Tirosint and have been very happy with no side effects. Try Tirosint!

August 28, 2013 at 7:29 pm
(721) Carol says:

Karen – I love San Diego. Fell in love with La Jolla and the Pacific Ocean when I visited. You are blessed to live there – that would be my dream place to live.

I take it day-to-day here. I couldn’t handle the sound of sirens, helicopters, winds, etc. for a long time after the storm. A bit better now. Local community center offered free counseling. Now I’m in survival mode with the T4, etc. Each morning I wake up and wonder how can I do this again. Your posts are encouraging – thank you for all you do for this forum.

August 28, 2013 at 11:57 pm
(722) Ed says:

Hello everyone,
Hi Karen,I’m still here. Been MIA (missing in action) due to travel for work. Thanks for checking on me. Gauging from your posts you seem to be doing much better than you were a few short months ago. Even though it seems like a few long months when you’re feeling bad.
I’m happy to report I feel quite well these past few days. I’ve been holding steady doses of Levoxyl along with some T3, then taking the another small dose of T3 around 11AM. Thanks to cabro for getting me to stop varying doses and times too quickly from one day to the next, expecting immediate results. I’ve been with this regimen for about 10 days and feel good, I hope the numbers say so too. I’ll be having a blood draw Friday with a new Endo that does prescribe Armour. Fingers crossed.
Bonnie: Please forgive me if I speak out of turn. I’ve been looking at the Adrenals/Thyroid connection. I read an article by Dr. Lam that pointed me in this direction. Try searching for his article if you think that may be of interest to you. Made sense to me that Adrenals need to come in line along with Thyroid if they are both out of whack.
Best wishes,

August 29, 2013 at 1:35 am
(723) cabro says:

Thanks so much, Karen, for the article. I could read About.com articles all day long if more of them related to post-thyroid cancer. The Italian study didn’t pass muster. Good analysis.

August 29, 2013 at 4:50 am
(724) Karen says:

Cabro:

Here is another site that covers one of the subjects in that weekly newsletter:

http://thyroid.about.com./od/thyroidcancer/a/riskfactors.htm?nl=1

You also might check other About.com sites to sign up for her newsletter.

There was also a discussion about the 2013 Thyroid Cancer Patients Conference being held in Philedelphia this Sept 27-29, and I will send that later.

August 29, 2013 at 5:29 am
(725) cabro says:

Thanks so much, Karen. I am up to speed about the conference in Philly next month. I can’t go, but I will be eager to hear about it.

The iodine connection is interesting. Iodine deficiency may have contributed to my cancer, but I suspect radiation exposure from diagnostic imaging and 4 fluoroscopic surgeries on my neck, prior to my Hashi’s going crazy, were also factors. My thyroidectomy was for Hashi’s. The cancer was an incidental finding. Of course, many believe that Hashi’s is significantly involved in the process, and that would have just piled on for me and tipped the scale. I would be curious to see statistics on Hashi’s + thyca.

I appreciate all you do for all of us. And I am so happy to know that you are doing better, even though you have more dosing adjustments ahead. I really hope you get there soon.

August 29, 2013 at 9:05 am
(726) Carol says:

Karen – You mentioned you use magnesium citrate powder. I’ve been using magnesium capsules (they help me sleep). It was difficult to find capsules w/o a lot of the fillers I am sensitive to. Do you have any recommendations for the brand for the magnesium citrate powder? Thank you.

August 29, 2013 at 10:14 am
(727) Karen says:

Carol:

I get magnesium powder from Swanson Vitamins.com. I picked the powder because it eliminated fillers. The only addition to the container is a dessicant packet and the label says “do not eat the packet”. I also get their Vit C powder. They also carry calcium powder.

I used to take magnesium, calcium zinc pills . It works wonderfully to relieve cramps. Now I take magnesium in lieu of BP meds and for good heart health. I put some in warm water at night to soak my feet! It absorbs into the skin per Virginia Hopkins, author and natural health care advocate. I have to watch my Collie Whisper as she will drink it all up if I leave it unattended.

For more on natural heart health supplements read “Is Your Cardiolgoist Killing You” by Sherry Roberts, MD. She is from New York State! The book is $19.95 on amazon.com or at your library.

I also take natural Vit E with tocopherols from Swanson in gel cap and put the oil on my skin. It absorbs well. More is absorbed if swallowed. NO aspirin for me. 200-400 IU Vit E is well published as an alternative to aspirin for blood thinning. Vit C also thins blood. I get salmon for Omega 3s , but it is $13 a pound. Ouch! I buy more canned salmon now . Omage 3 also good blood thinner .
.
Every collie I have had(11 in my lifetime) has had fish oil for coat and skin benefits. A vet as far back as in the early 50s recommended it for my collie ‘s coat. Did not find out until a few years ago they were also getting heart and joint benefits.

It is my pleasure to do as much as I can for the forum. I like to help others.

August 29, 2013 at 10:27 am
(728) Carol says:

Karen – thank you for the info on the supplements. I have a primary MD appointment in a few hours so I’m getting ready to go and will check in to the forum later in the day. Labs tomorrow. Endo on 9/9, Have a good day.

August 29, 2013 at 12:51 pm
(729) Karen says:

Cabro:

Per the pharmacist at Womens Intl Phar, one should call the individual State Board of Pharmacists to get rating of any compounding pharmacy in that state, It is all public record, and includes results of various inspections. I am going to check on a Wisc compounding pharmacy today, will see how the process works.
I should get the phone info on the Internet by keying in “Wisc State Board of Pharmacists”. I will let you know how it goes.

Yes, I am going to need some tweeking on the Erfa . Right now I am looking for another endo who prescribes Armour. I have added a touch of Sandoz T4 to the now 75 grain dose of Erfa and I notice the difference. The lab showed a bit too much T3 but I think that will level off naturally with time as my body adjusts to direct T3. The tweeking in long run will prove worthwhile.

It is a complicated process and I am very grateful to have your knowledge and experience to help. We are ALL helping each other.

August 29, 2013 at 2:25 pm
(730) Karen says:

Katherine:

Good to know you are doing well on Tirosint. My neighbor had a rash from Synthroid that put her in the hospital for 3 days. Keep us posted on your experience.

August 29, 2013 at 4:30 pm
(731) imediject says:

Okay, all ‘good’ things come to an end. And so did my doing well on Tirosint. First two weeks were absolutely great, then noticed my b/p was dropping for absolutely no reason. Like 90/50 low. Went to the doctors, and he gave me a few suggestions on how to redo the beta blockers, and I thought things would straighten right out. Wrong. Things just started to get worse, much worse on a daily basis. My b/p continued to drop with a slow pulse – signs of hypothyroid. BUT, I’d also developed a splitting headache, nausea, insane insomnia. Now, if that was hyperthyroid rearing it’s ugly head, my b/p and pulse would have gone up instead of down. So, as of today, my doctor and I have decided that it was three strikes and your out with the Tirosint. I haven’t slept a wink in 42 hours, and I’m still geared too high to even be tired. Anyhow, he and I talked at length, and seeing as I can’t handle acacia, gluten, or lactose as fillers, we decided because of it’s AB rating, to give the Sandoz levothyroxine a try. I’m off all thyroid for three days, and then will start the Sandoz brand. I thought I might have trouble finding it, but Walmart was able to get it from their distributor and will have it for me tomorrow. Soooo, here we go again. Something eventually has to work – it’s just trying to figure what that ‘something’ is!! I think I’ve discovered an entirely new level of ‘thyroid-frustration’.

August 29, 2013 at 6:33 pm
(732) Karen says:

Imediject:

Wow! That is such a shame, I am so sorry you experienced some difficulties like that. I had to go back to your past posts to refresh my memory on your situation.

To reassure you about Sandoz, there are a lot of people on this forum who are doing very well on Sandoz T4. Two of the inactive ingredients are the same as what was in Levoxyl, magnesium stearate and microcrystalline cellulose, and I had to refresh my memory on the other two. See post 562 on that. THANK you Cabro. Sandoz has no gluten as well. All things point to something that you should do very well on. We’ll keep positive, and pray a lot, and hope it works just fine!

Just a note: I took a beta blocker, Coreg, temporarily 8 years ago and my cardiologist told me to take the thyroid med at least 4 hours before or after I took the beta blocker. This BP meds interferes big time with thyroid med. Wanted to mention that in case you did not know…that’s the mother in me talking. Keep us posted.

August 29, 2013 at 8:50 pm
(733) Karen says:

OK , Glenna and Bonnie and all, here is your laugh medicine for the weekend:

http://www.youtube.com/watch_popup?feature=player_embedded&v=VRgQaOOZRo4

hope it works!

August 30, 2013 at 12:51 am
(734) cabro says:

Aw, imediject. I’m so sorry the Tirosint didn’t turn out well. What a strange mixture of symptoms, but the need for sleep really trumps it all. Did your doctor do any labs to see what was going on there? I do hope and pray the Sandoz levo is the one for you.

Karen, thanks for the info on beta blockers. I wonder if ACE inhibitors are the same. ??

Thanks for pursuing the compounding pharmacies for me. I was hoping to find one that had a high rating nationally for my endo, but it looks like that won’t happen. We talked about compounded slow-release T3, and he suggested I call the compounding pharmacy I found to be worthy and talk to them about it and about pricing. In the past, he has not found one he is satisfied with. But times change. My niece used one in Birmingham, AL, Medaus. Years ago, I heard about a very good one in NH. And that is the extent of my knowledge! I guess I will need to call several. I can learn along the way.

August 30, 2013 at 11:28 am
(735) Karen says:

Cabro:

Here is a Web Site I found for the Pharmacy Compounding Accreditation Board.

http://www.pcab.org

ACE inhibitors definitely interfere with Iodine and Potassium, my guess is they would also interfere with T4 absorption, I will check on that. Good rule of them, any meds should be taken 4 hours before or after T4. There are natural alternatives to ACE inhibitors – I will forward that to you later. Have to run – Time Warner is coming for some cable adjustment/work – I might be offline for a few hours.

If you key in “compounding pharmacies in the U. S.” on your search engine you will get several sites that can supplie you with pharmacies in each state.

August 30, 2013 at 1:07 pm
(736) Imediject says:

Karen, I’ve been on Tenormin (beta blocker) since 1980, and Levoxyl since 1977, and this is the first time I’ve ever had any problems like this. I take the thyroid meds in the am, and Tenormin in the pm, so that wasn’t the issue. Between the doctor and I, neither one of us could figure out what was going on – BUT, I’ve been off the Tirosint for two days now and as of this morning, my b/p is back to normal. I actually suggested Sandoz to my doctor, after reading about it here on the forum and then doing some research. I’m not a big fan of generic’s, but this company looks good, and I’ll just keep my fingers crossed that my body tolerates this better than it did the Tirosint.

Cabro, after only three weeks, it was too soon to do labs and get results that would be accurate. Labs should be done no sooner than four to six weeks when you increase the dose, and because of the half life of thyroid meds, it can be as much as three months when you decrease the dose. Supposedly, by going from the 150 of Levoxyl I’d been on clear down to 75 mcg of Tirsint, the dose was lowered, but because of it’s high bioavailability and absorption, I honestly don’t think there’s any comparison between Tirosint and any other thyroid med. The frustrating part definitely was having a major problem, and not being able to do labs to get an answer as to what’s going on.

So, I start the Sandoz in a couple days with Great expectations. And as for the Tirosint, how does the saying go…… The definition of insanity is doing the same thing over and over again and expecting different results. :-) Three times with the Tirosint was enough to show me that I just can’t handle it no matter what the dose. I think because of individual metabolism, it’s a unique form of thyroid that a few will be able to take with no problems, but others may hit the same brick wall I did.

BTW – finally got some sleep last night! :-)

August 30, 2013 at 2:07 pm
(737) Janet says:

Imediject:

I am so sorry you had such a bad experience. This whole thing is so hard. I had a terrible experience taking Synthroid.

I hope you do well on Sandoz generic levothyroxine. I am doing great on it. I did start on a lower dose because initially it caused my heart to race but now it’s all good.

Hang in there :)

August 30, 2013 at 2:28 pm
(738) Janet says:

Hi, Michelle

I hope you are doing ok and Tirosini is the pill that will work for you.
I felt so horrible when I was taking Synthroid too. I am so sorry you had to go throught that. Can’t wait to see how you’re doing :)

August 30, 2013 at 2:37 pm
(739) Janet says:

Ed

I have been wondering why you haven’t posted. Great to know you’re doing well.

August 30, 2013 at 3:14 pm
(740) Karen says:

IMediject:

After doing 5 months now of research on Thyroid meds, and being on this Forum and reading others, hearing about so many varying experiences, I have learned that one thyroid med could work perfectly for one person and not work at all for another. You certainly made the right decision and I love your definition of insanity. I have tried synthroid three times now “hoping” for a different result. That last time almost killed me.

Look forward to hearing good reports on Sandoz.

August 30, 2013 at 3:28 pm
(741) Janet says:

Hi Everybody :)

Today is day 15 on Sandoz Levothyroxine and I am feeling really good.
I will soon have to up it but I am still very optimistic. Less hair loss, no constipation, no stuffy feeling in my head, I am not at all dizzy, not falling asleep at 7 PM anymore and a normal heart rate :)

I know horrible Synthroid is completely out of my system now.

Yesterday was my first experience with dental xrays and a thyroid shield. I am so glad I found a new Dentist!! My Dentist was also very interested in thyroid health and my dosage. Very nice to have even a Dentist be so helpful!

I am sorry I have not posted in awhile. I have to catch up on all of you now and read more posts I missed.

You are all in my thoughts and thank you all so much for all of the information and the amazing caring people here.

Cabro, I passed your 10 day test and that was a goal for me :) thank you so much. Day 11 made me so happy

Anybody else wonder how long Levoxyl had an issue with potency? I honestly think it was several months because I notice how much better I feel now and I think I was a little hypo since Jan 2013.

Blood work soon. I will post results.

August 30, 2013 at 6:29 pm
(742) Carol says:

Janet: I agree with you. I think there were issues with the potency of the Levoxyl. I”m glad you brought it up because I thought it was just me.

August 30, 2013 at 6:48 pm
(743) kain says:

Oh my goodness am I ev er so thankful to find this site!after being on. levoxyl for 5 yrs now I’m being prescribed tirosint. I had such terrible neck pain and felt just blah! I called my endow. Was told that I needed to call my dentist for “jaw pain. I explained I did not have jaw pain was telling MA where the pain in my neck was located when she asked me…long story short was told to stay on tirosnt so angry I am labeled one of “those psychotic patients. I don’t feel my DR would rd anything g different. (Sorry for typos typing on my kindle and in a hurry)

August 30, 2013 at 9:28 pm
(744) Imediject says:

I did not do well on Synthroid either. When I was first diagnosed with Hashimoto’s, my endo tried me on Synthroid and I couldn’t take it. With this Levoxyl sanfu, he asked me to try it again and see what happened. Stupid me didn’t check out the fillers ahead of time, and they turned out to be the culprit. After doing a little research, I discovered that a lot of folks have big problems with acacia because of allergy and immune system issues. And being seriously lactose intolerant, that pretty much explained the gastric problems as well. As for the insanity definition, I swear I test that concept on a regular basis! :-) Thankfully I have a fantastic internist that helps me figure out what’s going on when I get to the point of throwing up my hands in frustration. It’s a shame a lot of doctors treat their patients like idiots, instead of teaching them what they need to know. Thankfully I have a good medical background that helps me stay out of trouble 9 times out of 10, but the right doctor that believes in listening as well teaching instead of preaching, is worth his/her weight in gold.

August 30, 2013 at 9:29 pm
(745) Janet says:

Kain,

When this all happened was when I found out I needed a new Doctor.
He gave me Synthroid and when I told him all the problems I was having he told me to just keep taking it.

You know your body. Don’t let anybody make you feel like “one of those psychotic patients” because you’re not. This has been so hard. I am finally on a pill that works and isn’t making me feel all crazy. Maybe find an Endo in your area.

You came to the right place :) Everybody here has helped me so much!! You will find great support and understanding here.

Take good care.

August 30, 2013 at 9:46 pm
(746) Janet says:

Carol,

As for the recall for the potency of the Levoxyl, which was the second recall ….

I haven’t felt right since January. Nothing specific, just tired, easily annoyed and then started gaining weight and losing some hair. I really should have gone to the Doc but didn’t. My dog was very sick and had to have surgery to remove a small amimal from her colon and I love her so much and thought it was b/c I was going through that for 6 weeks with her recovery time too. But, I should have gone to the Doc then – my fault.

My last TSH was 2.65 in December of 2012. Since it was in “Normal range” Doctor said no problem. I told him I felt better when it was 1.25 and he just blew me off and said it was fine b/c it was within “Normal range”.

I now have a new Doctor and Sandoz generic levothyroxine and I feel pretty good. Initially, I had to take a lower dose and I think that was b/c I was not really getting .125 mcgs of Levoxyl – potency issue!!

I would really like a detailed explanation of what exactly the potency issue is. I feel we are all intitled to that since we paid for that pill and should have gotten exactly the dose we paid for. We deserve that as well as need to know it when we start trying replacements at the same dose.

It’s not just you :)

August 30, 2013 at 10:03 pm
(747) Janet says:

Imediject;

Sleep is such a wonderful thing, isn’t it. I sleep so good now that I am on a different medication, Synthroid was so hard on me.

Can’t wait to hear how you do on the new meds.

And … you are so right about a good Doctor being worth his/her weight in gold. You are so lucky to have a good one.

August 30, 2013 at 10:49 pm
(748) Karin kain says:

I could cry I am so relieved to hear I am not living alone in this – What bothers me is I’m never sick (flu etc) but I have a ton of tendonitis issues, joint pains, tingling nerve things. I wonder if my diet and other rx fillers could be causing some of those symptoms. How long can I go w/o any rx I wonder. I would like to try the Sandoz. I called in my Levoxyl but they could only do partial refill so my Dr wrote new script for tirosint for 90 days! Now I have 90 days of rx I can’t take. When the MA told me to continue taking the tirosint I was so frustrated I told her I’d just use common sense and stop taking something that was harmful. I took it at around 2:30 today and by the time the kids were out of school I felt very irritable, pessimistic, heart burn, melancholy an achey neck like lymph node achey. My intern DR just passes out business cards for specialists if anything from my once every two to three years physical I make myself go for shows up. I just don’t like confrontation but I want to feel better. And btw tirosint causes aches pains, fatigue, hair loss. hmm isn’t that what hypo causes? Why would I want more of that? Sorry. I’m going to go read all of these and take notes. Thanks so much for every single persons comments. You all are in my thoughts and I care very much about your well being-please keep posting.

August 31, 2013 at 11:02 am
(749) Mary says:

This forum is a lifesaver for me. Thank you from the bottom of my heart. I started with Hashimoto’s about 20 years ago so my Dr started me on Synthroid. I felt horrible and then went into a thyroid storm. Found Levoxyl and everything got better for a while. Then nodules on my thyroid turned out to be cancer and they removed the gland in 2 operations 2 days apart. I thought that was bad until my Dr put me back on Synthroid. My sugar soared to over 400 and Dr insisted it wasn’t the Synthroid and was going to start me on insulin. My GP put me back on Levoxyl and have done ok for 15 years. When I went to pick up my Levoxyl refill, the pharmacist told me about the recall. Of course it was a Friday afternoon, so I had all weekend to panic. After some web searching I found this forum. Thanks to your hard work, I found the list of ingredients in the fillers of the different pills and was able to figure out which meds would be the best for me to try. My Dr was so appreciative that I did all the research before I went to see her. She hadn’t heard about the recall and we decided that Sandoz would be the best for me to try first. I’ve been on it about 6 weeks now and am doing remarkably well. Numbers look good after my first blood test, so Yay! Only bad thing is, they are following me for a large lung nodule found by accident from a lung X-ray for bronchitis. Fingers crossed, we are hopeful it’s from Valley Fever, which is common where I live, in Arizona. Thank you again for your help. You are a lifesaver.

August 31, 2013 at 12:54 pm
(750) Karen says:

Mary from Arizona:

Welcome to this forum, so happy to hear you have benefited so much from all the information here. I too have gained immensely from the information and experience from posters. I , like many others, have been posting since April or longer. so we have 5+ months of research under our belt. More will follow – keep us posted on all – we will pray that your lung is OK .

Karin Kain:

Welcome to you as well. So many people here have had problems with Tirosint and the synthroid complaints are record breaking. All who have had Synthroid problems should report this to Synthroid people as well as FDA and Medwatch. One person may do well on one med and another person very poorly on the same. Different folks, different strokes. You will find the thyroid meds and fillers listed in post 562/3/4 and the dessicated in 482. Compounded meds are also an option. See post 747 on that. A lot of people here are doing well on Sandoz. It may be hard to find, but usually Walmart and Costco have it, Stater Bros and Sav Mart in CA, and if you don’t find it just ask and let us know what city/state you are in. We will help you find it. Follow your intuition on any med. It it says “Don’t take”, do not take it. There are enough alternatives out there that I am confident you will find one that works. Please don’t be discouraged. We who have been on the forum for many months hopefully have paved the way for you to make an easier transition to another thyroid med.

For more info on Synthroid, key in “Synthroid, acacia and lactose” on the search engine at beginning of Forum. You will find the About.com Web Site by Mary Shomon on why the adverse reactions to Synthroid could be so bad.

Any other questions, just ask. Someone is always listening. Poor your heart out and feel comfortable that we will help you in every way we can. We won’t let anyone be defeated by this experience.

August 31, 2013 at 2:59 pm
(751) Karen says:

Carol out there in New York Land:

There definitely were issues will Levoxyl potency long before it was recalled. For the entire year of 2011 while in Florida I had ups and downs on potency. Also in 2012 – by June 1 we were back in San Diego and I noticed potency differences with each refill. In Sept 2012 Iwas below normal thyroid – TSH at 8. Then in April 2013 it tested too much. What was going on here? Well, then April 12 I was told Levoxyl went off the market, and that is when my REAL struggle started after being switched to Synthroid. Then Mylan. Then compounded. Oh my I could write a book!

Hope you continue to do well, Carol. You are helping so many by sharing your experiences.

August 31, 2013 at 7:22 pm
(752) Patti Booth says:

Hi all, first I want to say that this group has provided me with great information and motivated me to keep looking for the right medication for my situation. I had graves at 18 and my thyroid was radiated. I was on synthroid for 20 years and did great. Then menopause at 40 and my numbers were all over the place. I was diagnosed with fibromyalgia and was actually disabled for a period of time. Tried armour and the compounded version until I was finally put on levoxyl and compounded T3. It changed my life. Not perfect but functional. Have been doing pretty good for the last 8 years or so. I am also on bioidentical hormone replacement, or I think I would still be in deep trouble.

August 31, 2013 at 8:24 pm
(753) Karen says:

Patti Booth:

Welcome, welcome! So glad we have been of help to you. Would love to know when you were told Levoxyl was off the market and what you are taking now, only if you want to share that.

Look forward to sharing more!

August 31, 2013 at 8:59 pm
(754) Karen says:

Janet: I have also enjoed reading your posts. I understand about forgetting to go to doc while your dog was recovering. I too would have done the same thing. I purposely delayed my own dental work to make sure my collie got hers first. What we do for our pets! At any rate, you will enjoy my post 745 which is a diversion from our thyroid problems -just for a moment. Hope your dog is fully recovered.

September 1, 2013 at 3:54 am
(755) Janet says:

Karen,

Thanks so very much. My sweey dog, Jazzy is all healed and happy and active. It’s amazing b/c she was so very sick.

Collie’s are so beautiful. You’re so lucky.
Oh … sleeping pets was so cute! Thanks for posting.

Abbey, The dog I had for 10 years that has passed had a bad thyroid. She took Levoxyl too. Dogs take a much higher dosage and take it twice a day. If anybody has a dog with dry skin and hair loss and too much sleeping – get their thyroid checked.

And you are so right about our “babies” I have 2 and when the one was going through that surgery and what happened before and after was so hard for me and I really thought that was why I was feeling so bad, but I know now it was my thyroid, even back in January.

The TSH I had a few months ago was high 6.85 and that was right when the recall happened and I was only 4 days into a new pill. In December of 2012 TSH was 2.65 up from 1.25 in May 2012, when I felt awesome on Levoxyl.

I am really wanting more information on the potency issue and how long that has been going on. If you ask my Husband, he says a year, but a person you live with can be a good person to ask as to how long they may have noticed changes even when you might not notice it. He has been so very supportive and amazing through all this. I have had my issues and mood swings and he understands … and I feel so lucky.

Karen, you have contributed so much here and I look forward to all of the information you post every time I come here. Thank you so very much!! You are so awesome and I know how hard you must work gathering all this information. Thank You!!

Janet – (I live 30 minutes S of Chicago)

September 1, 2013 at 10:13 am
(756) Karen says:

Janet:: I don’t want anyone to go through what I have gone through trying to find a replacement to Levoxyl.

ALL of my collies, 11 in my life, have been below normal thryoid by age 4-5. At one time I had 3 collies, one a puppy, one 5, and one 13. The puppy had hypoglycemia until she was 12 weeks old and had attacks 2-3 times a day. The middle collie used to come get me when the pup started to shake. One day the older collie even brought her to me carrying the shaking pup by the back of the neck. This 5 yr old collie also alerted me when the older collie had difficulty getting up.
.

Janet, sometimes I get so discouraged. But when I turn to the forum and see a new person ‘s post and hear their story, I turn my thoughts away from my own concerns and focus on others. It helps me get through a difficult time myself. Every post on this forum contains valuable information from which we all can learn. And sharing with others is the best therapy for each of us… together we have great strength.

September 1, 2013 at 11:01 am
(757) Karen says:

Glenna:

I am having the same problem you reported earlier regarding the T3 issue in dessicated. After one month on 60 grain, my labs showed too little T4 and much too much T3. Using the conversion chart posted by Mary Shomon on synthetic to dessicated, it shows I should be on 105 grain, but my primary told me to go slowly, start with 60 grain, upping 15 grain each 30 days. She is on vacation again -I don’t think she is dosing me correctly. Still looking for an endo that prescribes Armour. Cabro has a lot of experience on Armour , waitng also for her input. Appreciate any info you can share Glenna. Thanks.

September 1, 2013 at 12:03 pm
(758) Imediject says:

Patti,
I’m also on hormone replacement in the form the estrogen patch, because of surgical menopause at an early age. After several failed attempts, I’m finally working through the weaning off process, but it’s been a long road. I was down to a half of a 0.025 patch with no hot flashes when I went on to the Synthroid. Within a few days I was having the occasional ‘warm’ flash. Which turned into the occasional hot flash, and within a couple more days I was going up in flames day and night. That’s about the time I’d had enough of the gastric issues and everything else that went along with the Synthroid, and called it quits with the stuff. I ended up having to increase the estrogen to half of a 0.0375 patch, and it took nearly a month for the “I’m Melting!” to go away. Thankfully I’m now on a 14 mcg a day patch, which is the smallest dose available, and I’m back to no hot flashes at all. :-) I’m not too sure what part of the Synthroid did that to me, but it’s the first time I’ve experienced such a problem with any of the thyroid meds.

Janet, with the four Golden Retrievers I’ve had in the past 20 years, the first three were all hypothyroid. It showed up when they were about two years old. My youngest golden boy is four now, and his lab panels have all been normal. Fingers crossed it stays that way for him. I understand it goes along with the breed, and Goldens are famous for thyroid issues. I know there is such a thing as ‘genetic hypothyroidism’, and that must be what many of our dogs end up dealing with.

September 1, 2013 at 2:48 pm
(759) Jan says:

I too am in the same boat as many others are after being on Levoxyl for over 10 years and did very well. Now I have had to choose – and I am on a generic levothyroxine from my Kroger store pharmacy. After 3 months, I have gained 15 pounds, skin is dry, hair is falling out, sluggish, fingernails brittle and splitting, and cuticles dry and flaky. I really want my Levoxyl back. However, I don’t know if that’s gonna happen. A pharmacist suggested dissolving the pill in water to dissolve it so maybe more of it will absorb. This morning, I had hot flashes for several hours, felt rather hyper, and now have seemed to level out. I think I’ll try it again in the morning and see if same thing occurs. I do not go to doctors except for once a year to get the darned Rx, and do NOT want to go numerous times to get bloodwork and trial and error prescriptions. I feel totally trapped by the “system” and its desire to make more money at the expense of the victims of thyroidectomies and thyroid disease. If I knew then what I know now, I would have changed my diet and done many alternative holistic things including quantum biofeedback therapy. But my thyroid (most of it) was removed 42 years ago so I must deal with it. Any suggestions on the crushing and dissolving so I might be able to stick with this generic? I also hate the fillers including corn, milk, aluminum, iodine, sugar, and mag stearate.

September 1, 2013 at 4:33 pm
(760) KLong says:

I too was on Levoxyl for many years with great success(never felt better) and am so upset about the recall. Now I am trying Tirosint which common sense should tell us that pure is better which I have been told that is what Tirosint is, pure, no fillers but I don’t feel as well on Tirosint as I did on Levoxyl and now my docotr and I are going through the adjusting period to get it just right AGAIN. I have recently written a letter to Pfizer stating my concerns but have not heard from them as yet (and probably won’t). But I do encourage all who have been affected by the recall to spend a few minutes to write letters to Pfizer and keep voicing your opinions and concerns about this matter.Remember the old saying “The squeaky wheel gets the grease”

September 2, 2013 at 12:39 am
(761) cabro says:

Glenna and Karen,

My experience with Armour was the opposite of Karen’s. I had plenty of T4 but not enough T3. Also, since I have no thyroid, I must have a base dose of synthetic T4 with the Armour to insure the delivery of enough T4 to keep my TSH suppressed. An aside here – I did better on Armour before their “problem” and reformulation in 2009.

Anyway, I was on 50mcg Levoxyl and 60mg (= one grain) of Armour. That kept my TSH in the cellar, where it needed to be. But since I felt lousy from insufficient T3, we switched after 18 months to all synthetic T4 and T3. That’s where I am now, and I have leftover Levoxyl for now. A recent dose decrease was indicated and that will free up some more leftover Levoxyl. I realize at some point it could just lose potency. :(

We will add Sandoz generic in at some point this fall or winter to see if I tolerate it. If not, I will probably use half tablets of my remaining Levoxyl in combo with Erfa, the Canadian version of Armour. Erfa has fewer fillers than American Armour.

HTH

September 2, 2013 at 12:51 am
(762) Karen Garman says:

Month 3 on Levothyroxine and I feel like crap!! I’ve lost half or more of my hair. Feel tired, dark thoughts, sweat like a pig, can’t sleep and the list goes on. I’ve called Pfizer twice and they couldn’t care less!!! I’ve read other message boards and there are so many of us that took Levoxyl and did well. Now all of us have poor quality of life because of the recall. We do need to band together and bring legal lawsuits against Pfizer!!! I’m searching for answers with no help from one endo. Talked with compound pharm and she said it was the binders in the other thyroid meds my body doesn’t like. Anyway, one doctor trying to help me started me on Spironolactone (Aldactone) to help with hair loss and hopefully the hot flashes/sweats balancing hormones. Vinegar hair rinse might help some also. Rogaine 5% too. I’m burning up doing nothing and I didn’t take HRT due to surgical menopause. Life was good on Levoxyl!

September 2, 2013 at 12:56 am
(763) Karen Garman says:

Thank you to everyone here giving knowledge and sharing your life!!

September 2, 2013 at 6:33 am
(764) Karen says:

Cabro:

I am scheduled to have the T3 and T4 lab work repeated at another lab this morning . My intuition tells me that the last report showing too little T4 and too much T3 was not correct since I am feeling so well on Erfa. The first labwork was done at her in offce lab, and several other numbers were unusually off as well. This in office lab has made mistakes in the past.

I read a Web Site last night from Inspire/Cancer Survivers Association, by BiomedEE dated 5-7-13 that will shed some light, at least for me, on the problems many people have had on Tirosint. Some companies make a gelatin capsule that has high glutamic acid that can form MSG, monosodium glutamate, in the presence of any sodium and can cause GI discomfort, pain and cramps. That would explain some of the symptoms reported by many. I have no evidence that Tirosint capsule has high glutamic acid, the reported inactive ingredients are only gelatin, glycerin and water, but I will check that issue out and report back. So if you are MSG intolerant, or suffer from GI issues on Tirosint, in the interim I would avoid Tirosint until confirmation of this report.

September 2, 2013 at 7:04 am
(765) Karen says:

Karen Garmen:

Thanks for the suggestion on using vinegar on the hair. I will do that. My grandmother the natural medicine doctor of the past, like many of our loving grandmothers, used to recommend that.

Karen, what form of levothyroxine are you taking? Synthroid, Mylan, Sandoz, or other? I am sure others here would be curious to know which brand you are using now is causing these problems.

I take several teaspoons a day of apple cider vinegar in OJ or yoho(yougurt). The health benefits of apple cider vinegar are too long to list here. Just key in “health benefits of ACV “on your search engine, and wha la – you will have several sites on ACV. It lowers chol for one thing.
Helps with acid reflux even tho it is acidic. Kills bacteria. I am sure this is not new to many of you who are so health conscious.

Karen Garmen, I hope you are referring to BHRT, bioidenticl HRT. I did 10 years of research on HRT at UC San Diego , and premarin/synthetic progesterone is a probable death sentence. I am hoping Premarin is not dispensed any more. I am not updated on that. I believe in the Bioidentical HRT, do it myself(be careful, E interferes with absorption of T4) and more and more research is popping up on that regimen that proves it is safe, especially with the weaker form of estrogen, estriol. Premarin has 100′s times the strength of horse urine Estrogen compared to what our bodies produce in natural Estrogen.

At any rate, I noticed many ladies here are on hormone replacement and wanted to mention that. Our research showed best results with natural E combined with natural Progesterone. Our conclusion was to always balance E with natural progesterone. Some dispencing doctors differ in opinion. Not life shattering. On to the next subject.

September 2, 2013 at 10:17 am
(766) Karen says:

Jan post 771:

You did not mention which brand levothyroxine you a re taking that is causing the bad symptoms. Please note post 562/3/4 for inactive ingredients in T4 meds.

Synthroid has some issues with the inactive ingredients acacia and lactose. See “Synthroid, Acacia and Lactose” on Mary Shoman’s About.com Web Site. You can search that through her search engine above on right side at top of this forum.

Many of us have gone through the difficult period of trial and error, retesting , repeat doctor visits, etc that you mention you would like to avoid. Hopfully the information we have all published here on this forum will help you make an easier transition to a new thyroid med.

Most manufacturers of thyroid meds recommend swallowing the pill with a full glass of water. This transports the med to the correct position in the intestines for maximum absorption. If you dissolve it in water , the quick dissolve property of the pills might cause the med to lose potency before it reaches its goal. If you put it under your tongue, same issue. I think it best to follow recommended dosing by the manufacturer. I would be interested to hear other opinions.

September 2, 2013 at 1:26 pm
(767) Bonnie says:

Thanks for posting the video of sleepy dogs and cats, that was precious. :)

Ed: the last time I had my adrenals checked in June at Mayo Clinic they were normal (cortisol was normal).

I am not able to take much of the Synthroid because it makes me hurt too much (extreme pain). I have been reading the posts and want to say that although I’ve been tested for shogrins (disease where everything is so dry in the mouth, tongue, eyes), that has been negative twice. I have some kind of underlying condition where I’m unable to take supplements and struggle with medicines in general for my mouth getting so dry. When I was on Levoxyl I struggled with some if this, when the dise was too strong, but then it got better when I was “fixed” at the maintenance dose I was on, and didn’t have to be on a water only beverage. It is very sad to have to go through any of this when I was feeling so well.

Yesterday, hubby and I went to renew our annual passes at Disney World and the day was a real struggle for me. I count my blessings I can walk, but its so rediculous knowing how easily I could walk through the parks with strong legs and no aches or pains. I hurt terrible, and once the Small amt. of Synthroid wore down I felt much better with the aches and pains subsiding. When we got some lunch in the park I took a swallow of hubby’s Sprite with my sandwich and my tongue and back of my throat felt burnt. I’m glad I was almost done eating after I had some Sprite because I couldn’t swallow anymore food. Everything was sticking to my tongue and I was getting so upset inside. I had soups and ice cream for dinner and even this morning my tongue/throat was like this. I was able to eat some chicken at lunch and it wasn’t sticking to my tongue, but my mouth is always dry. I had a meltdown this morning over the needless suffering that us non ending because of not having Levoxl. I want it back so badly.

I’ll continue next reply.

September 2, 2013 at 1:43 pm
(768) Karen says:

KLong post 772:

Please note my post 777.

We are getting so many new people. Welcome all to the Forum!

Some taking Tirosint who have not had the GI problem mention that they are taking a lesser dose of Tirosint compared to what they took on Levoxyl. It varies from person to person. I did well on it, but the cost tripled in July and I opted for other less expensive forms of T4. I am now on Erfa Armour from Canada(NorthWEst Pharmacy) and doing the best since off the Levoxyl. See post 482 for info on dessicated. Erfa will cost me $43.98 for 3+ months. My insurance does not cover any med from out of the country. The US Armour does not compare in quality and has some bothersome inactive ingredients. See post 564 for fillers in Armour by Forest thyroid.

We have excellent experiences on all issues here – you will get many posts with valuable info to follow. All of you newer posters please keep us informed on your progress, we are all interested.

See you all tomorrow – I am off for a day of barbecue, laughs, friends and family. Happy Labor Day Weekend!

September 2, 2013 at 1:56 pm
(769) Bonnie says:

Continued..

End of last week I went in to talk to the compounding pharmacist where I got the last one done. We talked for awhile. I believe we are going to try this again and I will know for sure Tues. or Wed. I’m fearful of adverse reactions and have reservations, but between a rock and hard stone I hope to try another one. It will have methocell plant based filler for slow release and the smallest capsule they have. We discussed it and so we’ll see if this pans out. They have to approve it with the dr who ok’d the last one.

September 2, 2013 at 5:53 pm
(770) Karin says:

Hi Karen,
Ok, I was all excited bc I called my walgreens and explained my dilemma about wanting to try the Sandov mfr and she checked a few things and told me I could get it! I just got home with my rx and it says LANNETT not sandov -cry cry. I had just taken one. Now what? My oh my it just continues…

September 2, 2013 at 8:47 pm
(771) cabro says:

Re: buying Erfa when you are USA-based. I understand that Universal Drugstore sells it for about $70 for a 4 month supply. YMMV. Here’s the phone number and link (if it goes through). The website says it is a Certified Canadian International Pharmacy. Tel 1-866-456-2456 Fax 1-866-783-4223. http://www.universaldrugstore.com/

September 2, 2013 at 8:57 pm
(772) cabro says:

Karen, I am so pleased to read that you are feeling better now on the Erfa + ? combo! Let us know how your labs turn out.

Thanks for your info on BHRT. That is on my list of things to discuss with my endo. I was saved from Premarin due to a serious allergy to horse serum, so I just skipped HRT altogether. I didn’t have hot flashes until after RAI and heavy suppression with T4 meds. I was 65 when the hot flashes began, so they must be from thyroid meds. Worst on Synthroid. Without a thyroid, I am now also cold all winter and hot all summer. :-/

September 2, 2013 at 10:12 pm
(773) Karen says:

Cabro: Thanks for that Web Site – better deal on the Erfa.

Womens Intl Pharmacy in Madison Wisc or Phx AZ 1-800-279-5708. will send you a packet of info on BHRT upon request either by telephone or info@internationalpharmacy.com. I took their BHRT from 1990 to 2004. After heart surgery the cardiologist made me stop BHRT – due to ignorance – but I educated him and started again. HDL plummeted to 23 off estrogen and went back to 50 on estrogen. BHRT is SAFE even for most of those who have had cancer but for many women it may be too scary to try. Those who have had breast cancer are usually on a med to block estrogen for the rest of their lives. That is a different story. I need more expertise on this subject.. I never had breast cancer.

According to my research, if you have not had breast cancer by age 50, after 50 it is caused by diet and life style. Before 50 it is genetic. Alcohol is a leading cause of breast cancer! Smoking next. Best book on subject is “What Your Doctor May Not Tell You About Breast Cancer” by John R. Lee. M, D,, David Zava Phd, and Virginia Hopkins, my favorite author on natural medicine.

If anyone is now on Premarin STOP and go to bioidentical HRT
STAT!

I am now on Erfa 90 grain . No more additional T4. Will advise on T4/3 lab report tomorrow.

Oof – I ate too much at the picnic today, going to crash now.

Karen

September 2, 2013 at 10:21 pm
(774) Karen says:

Karin:

The pharmacy should take it back for exchange. If they don’t , give me their name and address and I will have 100,000 women libbers at their door tomorrow. Well, at least we could threaten that!

Seriously, I would take it back. Let us know where you are if you can NOT get the Sandoz and I am sure you will have a lot of posts to guide you to a source. We have posters from all over this country. I will search it out as well.

September 2, 2013 at 10:29 pm
(775) Karen says:

Cabro:

I just checked the Universal Drug Store in Canada and the only Armour thyroid I could find on their Web Site was the Forest Armour made in the US. The Forest Armour is definitely one you want to stay away from. I believe you posted the inactive ingredients on post 564.

Please correct me if I am mistaken, I am getting dim at the moment….

September 3, 2013 at 1:10 am
(776) cabro says:

Karen,

That’s strange. The person who posted it is reliable and she said she is getting better results with Erfa from there. Maybe I can call them this week to ask.

Thanks for the info on BHRT. I see the endo in another week. I hope I can get him to do some testing. I did a 24-hr saliva test and will get the results next week on that.

September 3, 2013 at 2:04 am
(777) Janet says:

Karin;

Hi and welcome :) . This site is awesome. Everybody is so helpful.

I am on Sandoz generic Levothyroxine. I live near Chicago.

Go to a local independently owned Pharmacy. That’s what I did. They are happy to make sure you get Sandoz generic Levothyroxine because they want your business. And they don’t have any contracts with anybody. I pay 12.00 copay for 90 days.

Let us know if they take it back and give you Sandoz

Hang in there

September 3, 2013 at 9:33 am
(778) Karen says:

Good Morning Cabro and all:

I had only checked the Universal Drug Store Web Site – maybe they side order the Erfa brand.

I got my T3/4 lab numbers by phone this morning. They are normal. My intuition was right. Now on the right tract…I won’t have a difficult decision on what I do once Levoxyl comes back. I will stay on Erfa.

I was reading some chapters last night from my book on breast cancer by Dr. Lee . He has a chapter on what foods to eat and what foods to avoid to prevent cancer. Altho 80% of the breast cancers are caused by ENVIRONMENTAL toxins. He speaks about how to avoid the toxins. Even a page on how to position your computer system to avoid the emmisions generated from your monitor and hard drive. SIt two feet from monitor and at least 3 feet from hard drive.

Dr. Lee speaks often about Estriol, the weakest form of E. Estriol relieves hot flashes and night sweats without stimulating uterine growth. Estriol does not cause blood clots, but other estrogens do. It can be used by women who have had breast cancer.It prevents or reduces bone loss, improves skin texture, prevents urinary tract infection, improves blood lipids and helps PREVENT cancer of the breast and uterus. Published studies show that using .5 mg estriol delivered every other day for 2 weeks is effective in treating vaginal atrophy and urinary infection. It is used only every other day because it does not clear the body as fast as other estrogens, one dose lasts 2 days. Topical delivery of estriol is about 20 times more efficient that oral delivery. Progesterone is also an important factor in preventing and treating breast cancer.

The book again is “What Your Doctor May Not Tell You About Breast Cancer”, by John R. Lee M. D., David Sava, Ph D, and Virginai Hopkins. In paperback available on amazon.com. Excellent supplementation to your information on thyroid meds published on this Forum.

September 3, 2013 at 11:14 am
(779) Bonnie says:

Had a reply and lost it. :(

Karen- I’m glad your TSH is balanced now. I got a way to go to balance mine.

Sorry to hear your FB us gone. I also have memory issues with my iPhone. Too many pictures and videos that need stored elsewhere. Understand.

Will you really stay on erfa when Levoxyl comes back? I’m counting on it coming back. End my suffering.

Hope everyone had a nice holiday. We went to Olive Garden and then to the store for me to find shorts that fit me. I had lost 15 lbs, and was tired of pinning my pants to fit me. I really can’t afford to loose anymore wt.

Hope to hear from the compound place or I will need to call them. Will continue to update.

September 3, 2013 at 11:56 am
(780) Karen says:

Cabro: for this weeks newsletter from Mary, try this:

http://specials.about.com/service/newsletters/thyroid/1378202400.htm

September 3, 2013 at 2:06 pm
(781) Janet says:

Karen;

I am so happy for you that your labs are normal :) :)

And I agree with you. If mine are normal and I keep doing well on Sandoz generic Levo I will not go back to Levoxyl!

September 3, 2013 at 3:55 pm
(782) Imediject says:

Was wondering what everyone is paying for the Sandoz levothyroxine. I happen to be in the ‘donut hole’ with my insurance, so until I come out the other side, I generally pay 30% of the cost of the medication I’m getting. When I picked up the Sandoz, it was $29.00 for a three month supply – which would be 30% or around $90.00 full price. Seemed to be high for a generic, but the pharmacist said it was ‘upper tier’ generics. I swear they conveniently invent some of the answers they give! :-)

September 3, 2013 at 4:34 pm
(783) Karen says:

Imediject:

I paid only $8.02 for a 30 days supply of .175 Sandoz. back in May. That was cash price from Stater Bros here in CA. I happened to get it when I had already filled a Synthroid script for the month. Other wise insurance pays for it. It is a $2.65 co pay. I just got a 90 day refill last Friday for $2.65.

Hmm, I wonder if Sandoz is doing a Tirosint trick and gouging the price now. Cash price seems terribly high. I will not be using the 90 day supply of .175 Sandoz – I use Erfa now – and I would be happy to send it to you no charge. Do someone else a favor in exchange. I believe in the Magnicifican Obsession. Did you ever see that movie?

Let me know. Maybe you could send your address to Bonnie’s FB page and she could sent it to me when I give her my e mail. We should not be publishing any emails or addresses on this public forum.

September 3, 2013 at 6:22 pm
(784) Karen says:

IMediject:

Sandoz IS gauging the price now that Levoxyl is off the market. I just called Stater Bros and my 30 day supply of 175 mcg Sandoz is now $18.24 per 30 day supply cash price – more than double the price I paid in May. Fortunately, it should be covered by insurance – Sandoz is a generic to Synthroid and the Synthroid, Sandoz and Mylan and Lannett brands can be drawn from the same script with out having the doc calling in a new script for another brand. As long as refills are available.

I found that I had opened my recent bottle of Sandoz and took one pill over the weekend. The seal is broken and would probably not ship well. I am still willing to try…we are very hot in San Diego and I know Illinois is hot as well. I would hate to have that package sit in a postal truck in this heat and the med lose potency.

September 3, 2013 at 7:24 pm
(785) Janet says:

Imediject:

I paid a copay of 12.00 for Sandoz 90 days .125mcgs. It is covered by my insurance but now that I read your post … I always pay 10.00 copay for any generic. Hummmmm

So, I think you’re right, Karen too. I hope they are not gouging the price now. I will find out soon when I get a refill. I am going to right call now and ask. BRB

Ok, I just called and it;s still 12.00 copay for 90 days. But I am ok with that b/c they only carry Sandoz generic and its AB rated.

Thanks for posting, I am glad I checked.

I use a local Pharmacy owned by a very nice couple who are both Pharmacists. They are so awesome about carrying only AB rated generics.

Thanks so much EVERYONE here!!

September 3, 2013 at 9:44 pm
(786) cabro says:

Karen, Thanks for the info from BiomedEE. I am on that forum and he and I are almost always in agreement. We have discussed the gelatin and glutamic acid, a step in the breakdown to monosodium glutamate in the gut. I presented this info about Tirosint’s gelcap to my endo and he didn’t pooh-pooh it, nor did he put his stamp of approval on it. But he did allow it to stand as a possibility. I just had to get off the stuff.

How totally awesome it is that your labs are great!!! I’m so, so glad for you!

Yes, Sandoz seems to be gouging, which ticks me off to no end! It is likely only because of their AB rating that they can even dare to do it, much less get away with it. grrrrrr……I guess that’s the free market at work. I will fill my script for it sooner rather than later.

Thanks for the link for today’s emailing. I have a bad headache and will try to come back to it. Is it the one on weight loss?

Over the years, I’ve learned to stock up on meds in late spring to beat the heat. That’s one of the reasons I still have Levoxyl. The other is older “leftovers.”

Thanks for everything.

September 4, 2013 at 12:47 am
(787) Karen Garman says:

post 778 To: Karen

My new script is from Mylan and I never took any HRT at all after surgery. My test results are in the normal range…just NOT my normal range therefore my body is unhappy! I do believe in apple cider vinegar…great stuff. I take my supplements and eat healthy yet without the Levoxyl my system is a wreck. It all began 2 weeks after starting the new meds.

September 4, 2013 at 8:10 am
(788) Karen says:

Karen:

Many on this forum have reported difficulties taking Mylan, including myself.

Here are the inactive ingredients:

butylatedhydroxyanisole-used as a preservative and stabilizer,
known carcinogen and reproductive toxicant(Prop 65 CA)
Colloidal silicon dioxide
crosprovidone and Providone -broad spectrum topical antibiotic
magnesium stearate -cancer toxin CA Prop65, coats pills so they
slip through machine easier
sodium laural sulfate
sucrose

mannitol-sugar alcohol, sweetening agent, capsule dilutent, has diuretic and laxative properties, not subject to Control Substance Act, has potential for Abuse.

Many people on Forum have selected Sandoz T4 which has only 4 inactive ingredients, see post 564, and have done well. First two inactive ingredients were in Levoxyl.

The Sandoz can be changed from Mylan at the pharnacy off the original script as long as refills are available.. It is AB rated and has no gluten.

This Forum is packed with information to help you make your decisions on alternatives to Levoxyl. Please keep us updated on your progress, and hope you feel better soon.

September 4, 2013 at 11:12 am
(789) Karen says:

Forgot to mention that Providone is IODINE.

September 4, 2013 at 2:16 pm
(790) Dawn L says:

Long story short, I’m 44, I was put on thyroid meds almost 10 years ago. Synthroid was a disaster… After a year or two of “trying this and that” I was prescribed Levoxyl (88mcg)! I LOVED LEVOXYL for over 8 years and my numbers were very stable!!!

For the past 3 months I have been on Levothryroxine 88 mcg do to the Levoxyl recall. I HATE IT… Swollen thyroid, voice issues, feeling awful, digestive issues, cold intolerance, memory fog, vision issues. The blood/urine test results I received today are bad.

Dr visit today said my meds aren’t working and is raising my Levothryoxine to 112 mcg and putting me on blood pressure meds to stop the calcium dumping in my urine. I asked to switch to Armour (or anything else) but she flatly refuses to EVER prescribe natural medications and I have already tried the others.

Concerned is an understatement… I hate the 88 mcg dose of Levothyroxine… will the 112mcg improve my health or make it worse??? This is the ONLY medication I take… (very healthy otherwise)

I never knew there were different brands of generic and they are so different!!! After reading through a few hundred posts here, I called the pharmacy for the refilled Rx waiting for pickup and they only have Lannett … UGHHHHHH! Wondering if I should find Santoz or try the highter dose of Lannett?

(I already called Pfizer before finding this forum and they took my name and info regarding Levoxyl and they state summer of 2014 before it will return to the market)

September 4, 2013 at 3:31 pm
(791) Stacey Parker says:

Hi Everyone out there in Thyroid Land,

I’ve been following this forum daily since the very beginning as my pharmacy switched me w/o my knowledge from Levoxyl to Synthroid May 4. I had been happy with minimal dose adjusting on Levoxyl/Cytomel Combo for 10 years.

I had a fantastic Endo in the Midwest, who did extensive testing and I was Dnxd with Hashimotos that’s how I started the combo. I had in earlier years been placed on Synthroid with several reactions and Also tried Armour but didn’t get the results we wanted. So the Levoxyl/Cytomel combo became my life. I am also a FM/CFS patient Diagnosed in 2001 by a Good Rheumatologist in the Midwest.

In 2007 We moved from Fort Wayne, IN to Temecula, CA (Hi to all those in my 60 miles radius LOL) and I honestly haven’t found a Dr who actually seems to “Get it” Out here. Thyroid seems so foreign to them all. I do have a good Rheumy, however she just doesn’t know enough or understand, Free and Total T4, T3 and RT3. all she wants to follow is TSH. I am having to constantly ask for the proper labs to be drawn which I’ve learned from prior experience and being here reading faithfully….

September 4, 2013 at 3:32 pm
(792) Stacey Parker says:

Con’td….

I’m sorry this is a tad long, trying to shorten my life into a few sentences is tough lol! Anyway, I have since gotten off the Synthroid, (studied hard) and Requested Tirosint, journaled through out the time on that and I am one who is very sensitive to changes and chemicals. I reacted to Tirosint with Burning in my Gut, Joint Pain to unbearable ( that one point thought I was developing Lupus) Jumped off that, took a few days off, Felt better, con ‘td Cytomel, Then jumped onto Sandoz (after reading all of your postings..THANK YOU for That) However, Sadly, as I journaled through Sandoz I started to compare notes, and my reactions resembled Synthroid reactions.

So Looked high and low for another Dr, even called the Endo in Ft Wayne, Ironically he’s on Vacation..Every Date I tossed at them to fly back to see family etc. he is scheduled for Vacation.

I finally said screw it, (kind of like Ed did, and gave up all T4′s . Stayed on Cytomel and within the 3rd week… I can no longer wake up without feeling like I have very low blood sugar., I can’t walk through Target to pick up a few items, I am now completely Down in all aspects of my world. My body is no longer working correctly, Clothes are tighter, much tighter, I’m sweating all the time, thinning hair, Ear ringing horribly…My list of issues goes on and on….

I gave each T4 about 4/6 Weeks.. labs last draw in July were OK, But I am NOT. The GP I was seeing was hoping the T3 would convert into enough T4 I would be ok. But he and I didn’t agree on my treatment for FM, and so I am once again without a Dr other than my Rheumy. And To Date is what I thought, I am not being treated with enough T3 for it to convert without it going into RT3…I would have to have a much higher dose to use through out the day. I only Take 15mcg of Cytomel Daily so I knew I wouldn’t convert that little amount into T4 especially the Free Levels……

September 4, 2013 at 3:33 pm
(793) Stacey Parker says:

Con’td…

So here I sit, I want to go back home to watch my son play College Football in Sept/Oct./Nov. But I don’t know how I’ll do with out T4. I’m still hoping to get in to see old Endo while Im there at some point and Obviously looking into Erfa as a possible Treatment. I know he would be Ok with it, but it’s finding a date he can see me, read labs Etc.

In the Meantime, I’m going to stay on Sandoz,/Cytomel Deal with all the issues as best I can and Hope Levoxyl comes back Very Soon, And the Same Formula..And/OR work on getting placed on Erfa. I’m a little nervous due to my inconsistent treatment on Armour but that was many years ago. Hoefully I’ll Do Well on it, once I can get a Dr to Say Yes!

So A BIG Thank You to all you guys, I know I’m new here to You, but I’ve been hanging out with Every One of You all summer long : )
Please Take Care of Yourselves and Let’s Keep the Faith!

Stacey : )

September 4, 2013 at 4:13 pm
(794) karinn says:

Does anyone have any knowledge of lannett brand? Pharmacy was Supp to look for Sandoval and call me. No big surprise they didn’t! I hate to call again. I am wondering if I should stick to lannett? So frustrating to pour my heart out and be told by pharmacy they have Sandoval only for them to give me lannett.

September 4, 2013 at 5:09 pm
(795) Karen says:

Karin:

The levothyroxine made by Lannett has these inactive ingredients:

Colloidal silicon dioxide
Lactose
Magnesium stearate
Microcrystalline cellulose
corn starch
ACACIA
Sodium starch glycolate, possible gluten.

It is not widely dispensed in my area, I have asked about it at Von’s, CVS, Walmart, Sav Mart, Costco and Stater Bros here in San Diego. None carry it, and CVS and Vons contract with Mylan to use as generic to Levoxyl and Synthroid. All of these names are synthetic levothyroxine: Synthroid, Mylan, Sandoz, Lannett, Levoxyl(not available), and Tirosint. See post 777 for info on Tirosint.

The acacia and lactose are also ingredients in Synthroid. Many people on this forum have had severe reactions to Synthroid, myself included, likely caused by the acacia and lactose. Please see Mary Shomon’s , About.com Web Site “Synthroid, acacia and lactose” which you can key in on the search engine above top right in this forum.

Hope this helps you in making your decision.

September 4, 2013 at 5:23 pm
(796) Karen says:

Stacey:

Erfa Armour from Canada is far superior to the Forest Armour made in the U. S. I am on it and doing very well. Please see post 564 to compare inactive ingredients. Opadry White is not a dye, but a mineral filler that makes the pill white and can have serious side effects. Forest Armour also has a high content of each T4 and T3.
In a 60 grain pill, Forest has 38 mgT4 and 9 mg T3. Erfa is lower, with 35mg T4 and 8mg T3. This can make a difference to some people.

We are glad you have been following our Forum. Hopefully, this info will assist you in making your transition to an alternate to Levoxyl.

September 4, 2013 at 5:57 pm
(797) Karen says:

Karin: You have the right to ask the pharmacy to exchange the Lannett for Sandoz. They did NOT give you what you asked for.

September 4, 2013 at 11:54 pm
(798) Ed says:

Hi everyone,
I see I’ve been away too long and missed way too many good postings.

Karen, Great to see the news that you are feeling well was confirmed by good numbers.

Janet, I see your post from Aug 30 youre doing well on Sandoz, I really hope that continues for you. Hope your numbers look good also when you have that done.

Bonnie: Sounds like you’re way ahead of me with the adrenal testing, happy to hear yours checked out OK. Your side effects from Synthroid sound very close to what I experienced from it. I had terrible dry mouth that caused a crack down the center of my tongue that was absolutely hideous. I looked at shogrins and thought no that can’t be, has to be the Synthroid. Stopped taking it and the drug induced symptoms disappeared, but soon went hypo though. Not sure what to do with them for fear of harming the environment.

Which leads me into a brief update. My visit with new Endo went very well. I have orders for ACTH plasma, DHEA-S, Cotisol, to get this adrenal question behind me. Would like to rule out this adrenal adenoma as to whether it is of the hormone producing or non producing type. Forest Armour is in the mail cooking in this heat. I know you prefer Erfa Karen, but I’m taking what I can get for now, didn’t want to push new doc too hard. So when it arrives I plan to go off the Levoxyl and T3 add on for 3 days, then start the Armour. Is that still the preferred method when switching meds among those who have made a med change?

More to follow later.
Have a good week everyone

September 5, 2013 at 12:41 am
(799) Karen says:

Dawn:

Please note my post 809 about the inactive ingredients in Lannett. You mentioned you had a bad time with Synthroid many years ago, and as you can see, acacia and lactose are in Synthroid and also in Lannett levothyroxine. I would bet you would have the same reaction to the Lannett. You did not mention what brand of levothyroxine you were taking since Levoxyl was taken off the market. Could it be Mylan brand levothyroxine? The symtoms you describe on that are similar to what I experienced on Mylan.

The inactive ingredients of synthetic levothyroxines are posted on 562/3/4. Tirosint 567, Tirosint problems 777, and dessicated thyroid info on post 482. If you have any trouble finding Sandoz, if this is your selection, let us know. Most Costco and Walmart pharmacies have it or can order it. IN CA, SavMart, Stater Bros, Costco, Walmart, and some small pharmacies supply it. The cash price has more than doubled since May. Tirosint has tripled. Most insurance companies cover Sandoz but not the Tirosint. That varies.

Glad you are now on the Forum and hopefully our past experiences will help you make the right selection of T4.

September 5, 2013 at 12:55 am
(800) Karen says:

Great update Ed! Glad to hear you had a good visit with your endo.

Just a note, the NorthWest Canadian Pharmacy requests the script to read “Armour thyroid”, does not have to read “Erfa”. I do not mean to encourage any underhandedness, but, actually, the doctor does not have to know you are getting it from Canada. Although, best being upfront in all cases, and yes, my doctor knew I was getting the script for Erfa from Canada, but still wrote out the script “Armour thyroid…”.
The only differences in the two meds are the inactive ingredients and Forest has a bit more T4 and T3 in each dose of pill.
That script for “Armour Thyroid” would be accepted in the U. S. for Forest, or accepted in Canada for Erfa brand Armour. What you ultimately select is your business, I would not be offended. Just a note of information…please keep us posted.

September 5, 2013 at 2:57 am
(801) cabro says:

Hi, Stacey,

Thanks for sharing your story with T4 meds, Cytomel and doctor and lab test difficulties. I can relate and many others here can, too. I’m confused by your post, though. T4 converts into T3 (and RT3), instead of the other way around. T4 is unusable until it converts in the body to free T3, the unbound form of the hormone. Also, Cytomel is short-lived, unless you are taking time-release (only available from a compounding pharmacy). I take Cytomel and I burn through a 5mcg tablet in less than 4 hours. Perhaps the reason you wake up feeling so awful and have difficulty all day is because you need some T4, since it sounds like you are now basically hypo from insufficient dosing. I hope this helps and that you can find a medication that will work for you, along with the Cytomel. It takes a lot of hard work to sort all this out, which is twice as difficult when you feel so awful!

September 5, 2013 at 3:08 am
(802) cabro says:

Ed, Good to hear from you. I’m so glad you are getting your ACTH and DHEA tested. I will get the results of my saliva test next week and inquire about ACTH and DHEA. I hope the Armour will work for you. I have only gone from NDT to synthetic, not the other way around, so I can’t help you with the transition although your plan seems sensible. I hope someone else will know.

Karen, Thanks for the info about how the script should be written for Erfa. I’m storing all these treasured pieces of info for the future. I am so horribly afraid that Levoxyl won’t come back. Someone today said they read on one of the Mary Shomon About.com pages that it will not. As far as I know, that is a rumor and sheer speculation. However, I will say that my doctor tends to think in that direction. :( He has spent some time with me already planning down the road discussing other drugs to try instead if it comes to that. Although I don’t need it yet, I went ahead and filled a 30-day script of Sandoz levo 100mcg today at Costco and it was $9.63, with my co-pay being $3.53. Beyond that, all I can do right now is pray.

September 5, 2013 at 10:46 am
(803) Karen says:

Ed:

I COUDN”T wait 3 days when I went to Erfa from compounded. My TSH was already at 14.77. I now know that the last compounded was not working. So the very next day I took my first 60 grain of Erfa Armour thyroid.

I have heard of no reason why one should wait 3 days going from synthetic to synthetic or synthetic to dessicated or dessicated to synthetic. Three days being off thyroid med could affect the TSH, but as we all know, T4 has a 6-8 day half life, so you will still have T4 in your blood, enough to survive. In my trials I have gone to the new med the very next day and had no problems. I usually took the med a minimum of 2 weeks, EXCEPT for Synthroid. Five days on that and it was trashed. Good thinking Ed – how do you dispense meds so they do not invade the environment? I have heard of environmentalists finding evidence of medications in many place, our lakes, fish, near our waste plants, whatever. It is a valid concern. I never put them in the toilet.

Thyroxine is thyroxine and I did not want to miss any of THAT. I would be interested in hearing others’ experiences. If that is a norm, I would like to hear why. I am always learning news things on this Forum.

September 5, 2013 at 10:55 am
(804) Karen says:

FDA recommendations for safe disposal of drugs:

http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm101653.htm

Surprised, one recommendation was flushing….

September 5, 2013 at 12:31 pm
(805) Mary Phillips says:

My thyroid was destroyed over 8 yrs. ago. I have been on 112mcg. of levoxyl ever since and doing well. Now since there has been a problem I am sicker than I have ever been. I had major spine surgery in May. My third surgery since 2001. They have tried synthroid, armour, tirosint, and levothyroxine,and my readings are still all messed up. Some drs aren’t even aware of the levoxyl recall. I have been in agony with more pain now, a rash, candida in the groin, high anxiety, heart palpatations, and the drs are trying to say it is not related to the thyroid meds. I have heard 14 stories about the reason for the recall. I am to the point of not wanting to wake up to another day of misery!

September 5, 2013 at 1:12 pm
(806) Stacey Parker says:

Hi Carbo and Everyone Else out there,

Yes, I Totally AGREE with you on the way T4 is to convert into T3 and RT3, I understand that pretty well personally. (Or so I thought I did)

However, this new GP I was seeing in July/Aug. was hoping if I continued on the 15 mcg.Cytomel only that my T4 would Drop and My T3 would be enough to stablize out ALL my Labs.

My husband and I both scratched our heads as he was telling me that was his form of Treatment for Hypo. Didn’t Make any sense to either of us, but he was a new Dr, He liked T3 Treatment so that was better than most only agreeing to T4 only treatments.

So Yes you’re correct, I am Hypo/ happned very quickly too, so back on the Sandoz/Cytomel treatment for now and trying every chance to get in to see Endo in the Midwest ASAP.

Thank you for your information, I really appreciate your input, it concurrs with what my husband and I thought all along.

Stacey

September 5, 2013 at 8:22 pm
(807) Ed says:

Good evening everyone,
Thank you for your kind replies.
Karen, I guess I didn’t know how to go about getting the Erfa. I tend to speed read and or have read things and not remembered because of the Hypo brain fog I put myself through. The script was sent electronically for 90 day supply. Endo must be confident I can handle the Forest Armour. I hope he is right. Next time I’ll ask for paper so I can send it north. I agree with you, seems like Erfa is a little cleaner as far as additives go. I had to cut my T3 intake in half to avoid running out completely before Armour arrives. I’ll make it but beginning to feel the reduction a bit, so I know I needed the T3 supplement . So that is making me rethink the 3 day clearing time. Sure don’t want to go Hypo now. Feeling pretty good but not quite as sharp as I would like. May be the age factor too

September 5, 2013 at 8:58 pm
(808) Ed says:

yep, I hit say it by accident.

cabro, I’ll keep you informed on my labs. I’m feeling good about having those ordered, I didn’t ask for them. They appear to be a valuable asset to all the others I’ve had done. So glad he didn’t just re run the same old TSH, T4, T3 etc.

Stacey, and everyone else reading, Good Luck on your journey through this trying time. You’re in good company here with plenty of “been there” experience to help.

Oh yea, almost forgot to mention. I did call my US Reps office while they were on break. Was told I would get a call if and when he was taking visits, no call, so no help from that front. Maybe 1 800 BAD DRUG or 1 800 NO DRUG will take the case. Just kidding. Seems like we will be riding it out the whole way until Pfizer is ready.

Hang in there, life goes on. Be back soon.

September 5, 2013 at 9:07 pm
(809) Deb says:

I guess I was lucky that my pharmacy still had Levoxyl until late this summer when I got my first doses of Synthroid. My doctor calls to make sure I am still taking my thyroid medication cause my TSH is now 25! My BP is up and I feel like crap!
I still have some Levoxyl so I am going back to it, I have a total knee replacement coming up 9.30, I can’t be falling apart for that! But what is going to happen when I run out of that?! The drug companies get away with so much and as a nurse I can tell you those dinners they throw for the medical communities are part of what we pay for at the counter.
Hopefully I can find a preparation that will work for me more than Synthroid did.

September 5, 2013 at 10:18 pm
(810) Karin says:

From San Antonio- regarding Lannett levothyroxine. I have posted that I did not tolerate synthroid, gave heart palp, malaise, flu like symptoms, tirosint and have all of those on day 4 of the lannett manufacturer. I called my Walgreens who was sup to give me the Sandoz and after some confusion they discovered their system code for Sandoz is correct however what is in the stores is Lannett brand and Sandoz is not available. They will refund this and let me transfer but I have no clue how to find it. Pharmacy techs at Walgreens and CVS so far seem to have little idea about the differences in these generics and potential harmful side effects. I don’t know where to turn to find it and feel very overwhelmed. Both Walgreens and CVS told me they cannot get Sandoz. mfr. Its overwhelming to call pharmacy after pharmacy and they say “oh synthroid, yes we have that” and then explain it all over again! My estrogen replacement pill is different too and I wonder if the symptoms might be from that too? What happens to people who have no knowledge of this and their Dr’s don’t care, pharmacies don’t care? They really suffer! I don’t want Pfizer to get sued b/c then they may not ever get Levoxyl back on the shelves. Any advice is great. This is an awesome forum with so much great info. I have looked on other sites and their info is so outdated. I feel for those patients/sufferers too.

September 6, 2013 at 1:09 am
(811) Karen says:

Karin: Did you try Costco? I found one in NW San Antonio, 5611 Utsa Blvd. The number is 210-200-2027, they open at 10A.

Sorry to hear you are experiencing all this. Maybe the estrogen pill is not helping, what kind of estrogen do you take? Are you aware there is an estrogen cream you can take every other day that will eliminate hot flashes, help improve lipid profile, does not stimulate the uterine lining, and does not cause blood clots like many other estrogens and can be given even to breast cancer patients safely. This is called Estriol. If you are on Premarin, by all means stop and get to the bioidentical natural hormone therapy. I am wondering if you should continue on the Lannett with all those bad symptoms. In the meantime, I will continue to look for other COSTCOS in San Antonio. There is a great endocrinologist near Houston, Kidha Arem. If you like I will give you more info on him.

Anyone else from San Antonio?

September 6, 2013 at 1:57 am
(812) cabro says:

Karin: Also try to get Walmart to order the Sandoz for you. Someone on here reported they were successful with them special ordering it.

Ed: Good luck with Armour. I hope it is a winner for you. My concern about switching would be making sure you are low on T3. If you can stand it, skip the last 2 days of Cytomel before starting the Armour. I know you are guessing about the arrival. Are you starting on 1 grain (= 60mg)? I did better splitting my Armour dose and my endo prescribed it as 30mg (1/2 grain) taken twice daily.

September 6, 2013 at 10:54 am
(813) Elizabeth says:

I have been following these comments from the beginning.
I loved Levoxyl, but went to Tirosint as a replacement. On Tironsint I had back and hip pain so bad I could hardly walk and could barely get out of my chair.
In the comments here was one that told me that I could get Sandoz even if my pharmacy doesn’t stock it. I confirmed this at CVS., They can get it, but they require a phone call from the doctor’s office, and the script has to be written DAW. It takes about 2 days for them to get it.
The Sandoz is not Levoxyl, but I am OK on it, and it may get better.
I hate Pfizer. I want my summer back. I’ve been robbed….
I am grateful to Novartis for switching from being a brand, Levo-T, to a generic and lowering the price. Tirosint. is taking advantage of us.

September 6, 2013 at 12:54 pm
(814) Karen says:

Mary Phillips:

Hang in there, Mary, we are here to help. Be sure to read the entire forum, especially post 562/3/4 , 482, to make a decision about another thyroid med in lieu of Levoxyl.

I am having more cable work today, may be off line for a day or two.

September 6, 2013 at 3:19 pm
(815) Carol says:

Karin (#824) – I got Sandoz at the Target pharmacy. I asked the pharmacist ) if he could special order it and he said he would try if the endocrinologist indicated Sandoz on the script. It worked out – he was able to fill the 90 day script and it was $10 in July.

September 6, 2013 at 5:48 pm
(816) Tonya King says:

Hi everyone

I haven’t posted in awhile. Orig post #268. On my last post I spoke of my problems with Trioscint. The burning of my mouth and legs. I had just started taking the trioscint after my horrible experience with synthroid. I was having what I thought was hyper symptons and contacted my endo. He did bloodwork and found I was hypo and adjusted my doseage. I am on my second 30 day script and the symptons I was having are almost all gone. The burning is subsiding, I found that if I did’t drink adequate amounts of water thats when the burnung occured or if I did’t eat properly. I am feeling so much better and I beleive the trioscinct is working for me. My price hasn’t changed, it cost me $15 with my insurance, the same I paid for levoxyl. I will continue with the trioscint for now. My best wishes to you all in finding something that works for you.

September 7, 2013 at 2:14 pm
(817) Karin says:

Hi All and thank you for lending an ear and offering support. I am so discouraged I have called the following who are all using Mylan and don’t use Sandoz.: Walmarts (several stores indicate they will only provide mylan now), Costco’s, Targets, Sams, CVS, Oakdell independant pharmacy, Stone Oak independanct pharmacy, Heb stores all who do not carry anything other than synthroid or levothyroxine by mylan. I really want to get the Sandoz. I am not taking the thyroid medication and have been on the trial and error for a few weeks now, mostly skipping pills bc I don’t want the flu like side effects. I don’t know where else to turn. The Estrogen is from complete hyst. I take Estratest. Anyone have any other ideas.

September 7, 2013 at 5:24 pm
(818) Karen says:

Karin:

That is amazing that you could not find any pharmacy in San Antonio that can get you the Sandoz. Does anyone out there have any suggestions? What about checking the Sandoz Web Site to see if there is a telephone number you can call. Perhaps you can get a supplier of the Sandoz in your area from there.

The Estrotest is definitely a synthetic estrogen and I highly recommend the natural bioidentical estrogens perferabley Estriol – Womens Intl Pharmacy would be one source. If you need a doctor who would prescribe the natural let me know. Also, Glenna, a past poster here on the forum, might have a suggestion as to doctor as well as compounding pharmacy. She is in Texas.

I will check with Costco, Walmart, and Stater Bros here in the San Diego area to see if they would ship your Sandoz to you.

September 7, 2013 at 6:23 pm
(819) Cabro says:

I’m appalled that no one will order it for you! I would keep calling independent and compounding pharmacies and i would beg them to help you out. Is your script for Sandoz and does it say DAW (dispense as written)? My guess is they are thinking they be stuck with the rest of the bottle if it doesn’t work for you. Ask why and ask what the whole bottle costs, and how many in a bottle. If you have a 90-day prescription and the bottle is 100, then they aren’t really losing. If you don’t have a 90-day script, ask your doc to write one. If it doesn’t work and you have to switch, then your insurance still has to pay for a new prescription, so long as it is not another generic and is written correctly as DAW.

I came up with some 358 compounding pharmacies in San Antonio online in the yellow pages.
The link is listed in the first few results using bing search engine and also sixth on google with the search term “compounding pharmacy San Antonio.”

September 7, 2013 at 6:31 pm
(820) cabro says:

And there is a listing for independent pharmacies. http://www.yellowpages.com/san-antonio-tx/independent-pharmacies Not all of them are actually pharmacies, but maybe you can sift through them. I’m really shocked that Oakdell, Stone Oak and HEB won’t help you.

Beyond that, I would call Sandoz and let them know about the problem you are having and ask what they can do to help you. If you have a script for Sandoz, I feel certain that you can FAX it *somewhere* and get it by mail.

September 7, 2013 at 6:58 pm
(821) Janet says:

Hi, Karin,

I get my Sandoz generic Levo from a small family owned Pharmacy. My insurance covers it and I pay a 12.00 copay.

Try that.

They have no contracts with anybody like big pharm’s have and they are happy to have your business.

Try this link…….. http://www.bing.com/search?q=independently+owned+pharmacy+in+san+antonio&FORM=AWRE

Good luck and hang in there.

September 7, 2013 at 7:06 pm
(822) Janet says:

Karin,

Did you try:

Duncan Pharmacy, 3110 Nogalitos, Suite 107, San Antonio, TX. Tel: 210-532-1345

I’m not sure if that’s near you but it’s worth a shot.

September 7, 2013 at 7:36 pm
(823) Janet says:

Hi Everybody;

In a few days it will be a month on Sandoz generic Levothyroxine.
I am doing great on it. Some days I feel a little hyper but no biggie. I think it’s the days when I drink too much coffee :)

I am having blood work next week. Will post results but I know I will have to increase the Sandoz.

It’s not Levoxyl but it’s a good replacement so far :)

Cabro … you’re so awesome working so hard to help Karin :)

Everybody here is so great!! I appreciate all of you and all of the posts here and the help & support you have given me and everyone here.

September 7, 2013 at 7:58 pm
(824) Janet says:

Deb;

I know exactly what you mean and …we do pay for all of it!

I worked in 2 different Dr’s offices and have had the lunches you write about three times a week. Along with … the huge bags of ink pens w/their logo, little flash lights and assorted other “junk” with their logo, huge bags of candy bars, donuts, cakes etc etc

Dr’s tropical vacations, Dr’s free computers w/free internet .. etc etc.

What big pharm does makes me furious. I want Levoxyl back …but if I contimue to do so well on Sandoz generic Levo, I will not go back to Levoxyl!

My Sister is a drug Rep and right now – we are not speaking b/c she is furious with me over my comments :)

But … something isn’t “right” here. Why would it take over a year to get Levoxyl??? I want to know EXACTLY why and I am sure we never will.

Hang in there everyone

September 7, 2013 at 9:07 pm
(825) Karen says:

Cabro:

You deserve applause from ALL of us – you are definitely the Forum Walking Book of Knowledge! Thank you for all your efforts.

It has been so very hot here in San Diego, 100+ for the past week. In addition I am still going through the hot sweats common with the thyroid coming back to normal. I have another month to go before I up to 105 grain, final dose. I can look forward to the sweats ending at that time, hopefully.

September 7, 2013 at 9:10 pm
(826) Karen says:

Janet: Good to know you a re doing so well on Sandoz. Hope you and your sister will make up soon. Karin has had some great help.

September 7, 2013 at 11:12 pm
(827) kat says:

I called wal mart and the pharmacist and he told me the Sandoz “levo” could be ordered overnight. I got mine from Medicine Shop. I think the total cost for thirty days (200 mcg’s) was total of twelve dollars. I live in Pennsylvania and could not get them from Costco or Sam’s.

September 8, 2013 at 3:33 pm
(828) Karen says:
September 8, 2013 at 6:40 pm
(829) Carol says:

Thank you, Karen, for the link (#843). My endo would not order the Free T3 but I got a separate order from my primary. Endo ordered TSH and Free T4. I will get my results this week. Thank you for sharing that article. I have learned so much from you and everyone else sharing their experiences.

September 8, 2013 at 9:21 pm
(830) cabro says:

Appreciate the kind words, but I am really just sharing what I have learned. I’m old and have a whole lot of experience LOL. And I have 7+ years of active thyroid disease, several with raging Hashi’s and 3 with thyca (thyroid cancer). I am glad to be able to be here and feel the need to pay it forward. Also, I was super blessed to find a REAL doctor, one who is relentless with me to find answers and understanding. I could not done it without him or without my faith.

September 9, 2013 at 8:09 am
(831) Joanne says:

This is my first post, but I have been following this forum since the end of July. I have Hashi’s, and have been on Levoxyl for 5 years. With the recall, I went on Synthroid at the beginning of May, thinking brand name was better than generic. I had issues with anxiety after starting the Synthroid, which I also had an issue with before going on any thyroid medication years ago. On Levoxyl, I still had the occasional issue with anxiety, but not on a regular basis.

In July, my TSH with 2.44, after 2 months on Synthroid, so that seemed fine to me, and I thought the anxiety wasn’t related to the Synthroid. But by the end of July, I got really suspicious that the Synthroid was contributing and found this forum. I just started on Sandoz 75mcg 5 days ago. CVS (in PA) was willing to order it for me. The jury is still out on whether or not this will work better for me. One question I have is if your TSH is under 3.00, How do you know if some of the symptoms you are having are related to the drug or the dose of the drug? Even while I was on Synthroid, I wondered if a higher dose was what I needed or if it was a reaction to the fillers. I opted to try the Sandoz based on all the good info I read in this forum. Thank you to all.

September 9, 2013 at 4:16 pm
(832) Nancy says:

Well I am trying to get up to date on all of this information. During the middle of May I was told there was a shortage of levoxyI. really didn’t think anymore about it because I had plenty a couple of months worth. I had my complete thyroid removed 10 yrs ago & my meds have been changed several times, just the dosage. After coming across this site I have been freaking out this weekend, about side effects people have indicated on the generaic meds. I have been on the levothyroxine, Lannett. for 2wks now, I am experiencing being warm which I never had with the other I was always cold. 78 degrees in summer in the house with a sweat shirt on, know just a Tshirt. I also have psoriasis which has flared up more then normal, could be a coincidence not sure.Have not been sleeping well but I haven’t slept well since going through menopause. I called my pharamacy & they indicated they could get whatever I wanted, Lannett, Sandoz etc. I also went to another pharmacy where they do compounding & said that many of their patients on thyroid meds are doing the compounding. My question is do I stay on the levothyroxine to see how that works & if so for how long? Do I go to the compounding. I am very fearful of loosing my hair & gaining weight, just got my head right to train with a PT & food & doing really well motivation wise. Any advice from some of you with your experiences. I know everybody is different. Not sure which way to go.
Thanks to any information or advice on moving forward.

September 9, 2013 at 6:02 pm
(833) cabro says:

Joanne, After dealing with multple meds and doses constantly over a 2-1/2 year period, I have learned (the hard way) to suspect the drug. These fillers in Synthroid wreak havoc on too many of us. One way to find out is to go off the drug and try another. Another way would be to try a slightly lower dose of the Synthroid, e.g. take a half pill on Sundays or a half pill Sundays and Wednesdays, to see if the dose change helps you. Good luck with all of this!

September 9, 2013 at 9:07 pm
(834) Joanne says:

Thanks Carbo. I do feel better about taking a drug with less fillers. So hoping that Sandoz will work ok for me. I appreciate your input.

September 9, 2013 at 11:23 pm
(835) Carol says:

Joanne (849) – I received my lab results today after being on Sandoz (generic T4) since July. Very similar to where I had been on Levoxyl. I asked to retest in 6 wks (rather than 3 months) to make sure it continues to stay that way. And he agreed.

September 10, 2013 at 9:11 am
(836) Karin says:

Update: I finally finally got my Sandoz. Now I hope it works! Thank you all for the countless replies with support. I will refer back to this in 90 days when I need a refill. Thanks again! I will post how I’m doing

September 10, 2013 at 9:57 am
(837) Karen says:

Carol:

That is great news Carol. Hope you continue to do very well.

I tried compounded T4 with Avicel filler on Jun 4, and a month later switched to compounded T4 with vit C powder filler. Because I have damaged inner ears due to Gentamicin exposure , I could not tolerate either fillers due to the antiinflammatory effects . (I went over to Erfa Armour on Aug 1.) In going over my blood work with a new endo, I saw a TSH of 5.2 on May 31, and then blood work of July 18 showed a TSH of 14.77. What on earth happened ? I was on T4 every day. That period between labs covered the month of T4 with Avicel and 2 weeks of T4 with Vit C powder. I felt fine on the T4 with Avicel energy wise, but did notice fatigue after switching to Vit c filler per my notes.

I now am positive the Vit C powder interferred with the T4 and caused my TSH to go high. I confirmed this yesterday with the parmacist who dispensed the compounded. The pharmacist asked “don’t you remenber my mentioning that posibility to you when you started the T4 with C filler?” I did not remember that at all. But I did find his comment in my notes!

To comment on Joann’s question, it can be very difficult to know exactly if the fillers in the medication are the problem, or if the dose could be the problem. When you have that question also, and you are below normal thyroid, it is even more difficult to make a clear desision. That is why is it important to notate the dates when you are taking each med( for trials) as well as every symptom you have. And to review your notes with your doc!

If you have a normal TSH and have “symptoms” odds are 99999999999.9% the symptoms are caused by the fillers. My other recommendation would be exactly the same as Cabro’s.

September 10, 2013 at 10:09 am
(838) Karen says:

Nancy:

To comment on your question “Do I stay on the levothyroxine(Lannett) or go to compounded”. My personal recommendation, after I have experienced the trials of many meds including Lannett over the past 5 months and having read this Forum since April, I say stop the Lannett STAT. The acacia and lactose are also in Synthroid. For more info on the ACACIA and LACTOSE issue read Mary SHomon’s About.com Site “Synthroid, acacia and lactose”. You can use Mary’s search engine at top of this forum to right.

The Sandoz has the least number of inactive ingredients, and 2 are the same as what was in Levoxyl. That would be the only synthetic T4 I would recommend your trying before you went to compounded. I am concerned about Tirosint due to all the GI complaints listed here on this Forum. I will reference the post on that issue later. There are also excellent references here on compounded, how to find a pharmacy in your area and how to check the pharmacy out. I will post those references again later too. So many posts now, it is hard to find them.

September 10, 2013 at 10:35 am
(839) Rhonda says:

Just a heads up – went to get a refill on my Sandoz levothyroxine and was told it was no longer available. At first, the pharmacist said it was dc’d. I called Sandoz this morning and they said that they were experiencing manufacturing issues and that it will be released late September or October. AND I have a feeling that the price will go up. My life depends on replacement just like so many of you on here. I was on levoxyl for over 20 years. 125 mcg Levoxyl with a 1/4 grain of Armour and my levels have always been perfect. It was as good as it could get without a thyroid. But now, nothing but problems with the few options that are available. I am allergic to Synthroid and Mylan generic. It causes severe vertigo and a rash. The Lannett version is the same exact pill as Unithroid. It causes flutters in my ear. I am unable to go on a full replacement dose of Armour or Naturethroid because I am too sensitive to the T3 amounts. Fortunately, I have never had an issue with converting T4 to active T3 but that is also dependent upon the absorption of the Levo. Even changing to the Sandoz version, I have been in the hospital with cardiac issues, palpitations, spikes in blood pressure, dizziness, joint pain, etc. ALL since changing. I have never had any of these issues EVER. I do not believe what Pfizer is saying. I think there is more to the story than what they are saying. Once again, a great example of how it’s politics/money before people! Unbelievable! I need my Levoxyl back. All I can think of is surviving this Hell for the next 365 days til it comes back on the shelves. It seems as though this nightmare is never going to end….

September 10, 2013 at 10:38 am
(840) Rhonda says:

Oh, and I forgot to mention that I tried Tirosint. Extremely potent. Had to lower the dose by half but could not tolerate it. An hour after ingestion, it felt like someone kicked me in the chest, severe leg cramps, and horrible gut problems.

September 10, 2013 at 1:05 pm
(841) Lin says:

I was just told at Costco they pulled the Sandoz brand off the shelves and it is no longer available. I have tried the mylan brand and synthyroid and cannot tolerate it. Tirosint gives me extreme bloating and burning in my stomach. Contemplating Armour. Nervous about trying it.

September 10, 2013 at 1:18 pm
(842) Karen says:

Rhonda: Thanks for your report on Tirosint. See post 777 for information why Tirosint may cause stomach/intestine problems.
I did not hear about Sandoz going off the market -that is appalling – the price here in SAN DID go up! In May cash price was $8.02(without insurance) and today it is almost $20.00. Tirosint tripled in price since May.

You may do very well on compounded. The most popular filler is Avicell, microcrystalline cellulose, usually 125 mg is needed to fill #3 capsule. I tried it, T4 delivery was excellent, but…my unique med situation with damaged inner ears made me sensitive to inflammatory action of Avicel(plant cellulose).

To locate a compounding phar in your area key in “compounding pharmacies” on your Internet search engine. You will get several sites that will locate a pharmacy state to state.

There is a compounding pharmacy in Wisconsin that uses a filler with T4 of brown rice organic flower that is specifically used for super sensitive patients. Their number is 212-373-1050. I bought some organic brown rice flower at a health food store, have eaten it with no reactions.

Womens Intl Phar in Wisc and AZ 1-800-279-5708 compounds T4 with olive oil or a choice of about 20 other oils. Priced reasonably at approx $20-25.00.

Any questions just ask.

September 10, 2013 at 1:25 pm
(843) Karen says:
September 10, 2013 at 3:29 pm
(844) kAREN says:

CABRO AND ALL:

SANDOX LEVOTHYROXINE IS CURRENTLY UNAVAILABE DUE TO A DELAY IN PRODUCTION. THERE IS NO PUBLISHED AVAILABILITY DATE AS YET.

September 10, 2013 at 3:35 pm
(845) Karen says:

Lin:

There is another Armour by Erfa made in Canada that is excellent.
Only fillers are mag stearate, cornstarch, sugar and talc- it is very well tolerated.

I could not believe it when I heard Sandoz is now also pulled off the market. If anyone depends on Sandoz, let me know – I just got a 90 day supply and am not using it. I am on Erfa Armour.

Carol: how is your supply?

What next? Is the FDA going to shut down our compounding pharmacies? What happened to the vote on FDA taking over compounding? What is going on in our country??????????

September 10, 2013 at 4:16 pm
(846) Carol says:

Karen (#860) – My supply should be good for another week. The endo just sent in the revised dosage script for Sandoz to Target electronically yesterday and when i called to see if they had received it, they said they would fill it with Mylan. I said no thank you.

Maybe it’s time for me to switch to compounded. There are no other safe options. Walgreens said they have a bottle of Sandoz 100 mcg but after that is gone they will no longer stock it. My dose is 50 mcg 3x/wk and 75 mcg 4x/wk. I don’t know if I can split the 100s into 4 pieces.

September 10, 2013 at 5:10 pm
(847) Karen says:

Carol:

That really makes me angry. You just spent weeks normalizing on Sandoz and once it works for you, it is taken off the market. Just the same story with many others. I am so angry .

I cannot believe this.

September 10, 2013 at 5:18 pm
(848) Karen says:

Carol: At least on compounded you can get the custom capsules in your approx 64.2 mcg a day dose.

September 10, 2013 at 5:38 pm
(849) Joanne says:

I can’t believe Sandoz levo is now in a state of “not currently available.” I just switched to it 6 days ago. I am hesitant to continue on it even for the rest of the monthly supply I have and then have to switch to something else and start the process all over. This whole thing is crazy. I guess it’s time for me to come up with a new plan. Thanks to everyone for the up-to-date info.

September 10, 2013 at 7:13 pm
(850) Rhonda says:

Thank you all for posting your experiences. It’s nice to know that I am not the only one struggling. All of you are in my prayers.
Karen: I have tried several different compounded versions with no luck. I have mixed and matched every combo you can think of.
With regards to Armour, it use to work great before they reformulated it back in 2009? Now, I have sensitivities to it and Nature-throid has just never worked for me. My pharmacist recommended trying the generic version, NP Thyroid by Acella and for the last 2 days no complaints. I just might like it but I don’t want to speak to soon. However, I still need a base of levothyroxine since I can not tolerate a full replacement dose of the natural desiccated pills. Either way, looks like I will be under dosed and have to settle with a crappy generic. After all this, I do wonder WHEN Pfizer brings Levoxyl back, if it will work the same since they reverted back to an old recipe and add 2 extra fillers. At least that is what one of Pfizers pharmacist told me.

September 10, 2013 at 7:21 pm
(851) Carol says:

Hi Karen (862/863):

I called the endo and left him a message about the Sandoz. And that I would like to try the compounded, I don’t know if he will write the script for the compounded but I wanted to at least try to make him aware of what few options we have.

September 10, 2013 at 9:02 pm
(852) Lin says:

I have not tried calling the local pharmacies yet but is armour by erfa available on the east coast, or do you have to mail order if from canada

September 10, 2013 at 9:02 pm
(853) Karen says:

Rhonda:

Very curious to know what your symptoms were when you could not tolerate a full dose of dessicated thyroid and knew that you were getting too much T3?

September 10, 2013 at 10:19 pm
(854) Ed says:

Hello everyone,
I’m shocked to see the news about the Sandoz unavailability. It makes me both sad and more so angry, because I also know how those who have found that it works is feeling about it right now. My heart goes out to you and I do hope it is back this month.
I finally received by snail mail Forest Armour Thyroid today. I’ll be starting on that journey tomorrow morning. It was e ordered Aug 28. 13 days, not bad service for 2013. Reminds me of stories from back when Morse Code was high tech. I think I saw Canadian orders arriving faster than mine from the US. We are heading for simpler times. Next gen smart phone will have a black and white camera. Kidding, kidding. Just trying to lighten up a bit to maintain sanity.
Question for Karen, I saw where you mentioned hot and sweats. I’ve been burning up soaking wet. Sounds like a good thing. I thought it was a symptom of heat intolerance from being Hypo. I really hope you’re correct and this passes. I’ll keep you posted how the NDT goes for me soon.
Take care.

September 10, 2013 at 10:45 pm
(855) Janet says:

I just called my Pharmacy they said they have plenty of Sandoz.

I Also googled/binged it and saw nothing about a shortage.

Where did you find this?? It’s freaking me out b/c I am doing great on it.

September 11, 2013 at 12:49 am
(856) Karen says:

Lin post 867:

I got Erfa Armour from NorthWestPharmacy in Canada. I did not find any source for the Erfa Armour in the U. S. Other Canadian pharmacies I checked on the Internet had the Forest Armour thyroid. The Erfa was not expensive, only $43.98 for a bottle of 100 tabs 60 grain each and $9.95 shipping. That will carry most people 2-3 months.

Ed: I got my Erfa Armour in only 7 days from Canada. Thyroid meds are very sensitve to heat which could diminish the potency.
The U. S. mail is usually careful with meds in that respect, and they are not delivered with the regular delivery in the hot weather. They go in AC trucks direct to your mailbox.

I had mild sweats as the thyroid hormones normalized. Last TSH showed 6.63, and when I upped my dose per schedule from 60 grain to 75 grain, I got more sweats. It happens to be very hot in SAN at this time as well.

Recommend starting dose is usually 60 grain and you up dose gradually.

BE ALERT to hot sweats accompanied by rapid and/or irregular heart beat and higher BP. If you have the skipped beats feeling with hot sweats, call your doctor ASAP and stop the dessicated. If you cannot see your doctor in 24 hrs go to an urgent care clinic to rule out atrial fib, which is what too much T3 can do. Better safe than sorry. You are getting direct T3 with dessicated and your body needs to adjust to that. I believe Cabro recommended easing back on the synthetic T3 before starting Armour which is a good idea.

I checked Stater Bros and Costco in SAN and Sandoz is not available to order. The FDA Web Site would have more info.

September 11, 2013 at 7:33 am
(857) Lin says:

Is there a good brand of armour I can get at the local pharmacy to try first before I mail order it. I have never tried it before. Little nervous on how I will feel taking it. SinceI don’t take anything for t3 now do you think it being too would be a problem? I was originally on 100 mcg of levoxyl and felt great I am now on 50 mcg of synthroid and feel awful. Only been on it a week

September 11, 2013 at 10:15 am
(858) Carol says:

I called Sandoz US Customer Service again today and they said the same thing they did yesterday. Sandoz Levothyroxine T4 is currently not available. They advised I call back next Wednesday to get an update as to when it might be available at the wholesalers so my pharmacist can order it. The # I called is (800) 525-8747. They were a little more empathetic to me today than yesterday. They said they have been getting a lot of calls.

September 11, 2013 at 11:27 am
(859) Janet says:

Carol,

Thanks so very much for posting that phone number. I called Sandoz and the woman was VERY nice and I specifically asked if it would be available in 90 days and she said she thought so – maybe even sooner.

I just got a 90 day refill so hopefully it’s back for my next.

I asked if a lot of people were taking it and she said YES!

I also called my Pharmacy again and they said they have gotten no information at all that it’s unavailable.

September 11, 2013 at 11:49 am
(860) Carol says:

Janet: You”re welcome. So glad you are doing well on the Sandoz.

September 11, 2013 at 12:12 pm
(861) Elizabeth says:

Bless you all for the heads up last night on the Sandoz disappearance..
I was at the Pharmacy first thing this morning and got enough Sandoz to last until February, and the the very helpful CVS pharmacist located and ordered enough to last me a year.
.
I think there is something very wrong with this situation.
The levothyroxine supply seems to be dwindling. And is there something wrong with it? And why is it so hard to get information? The pharmacist said that this thing with Sandoz dates back to last July. Why are we only hearing now?

September 11, 2013 at 12:28 pm
(862) Karen says:

Lin:

Yes there is a U. S. Armour thyroid made by Forest . See post 482 for more info on dessicated.

Your other question abou theT3 would best be answered by Cabro and others with dessicated experience.
Although I am now on Erfa Armour I have very little experience with dessicated compared to them. Hope all goes well.

September 11, 2013 at 12:30 pm
(863) Karen says:

Stater Bros here in San Diego tell me Sandoz will be available in late Oct. It is a production problem.

September 11, 2013 at 1:29 pm
(864) kat says:

Hi Everyone…I also called Sandoz and got the nasty person that told me to call back and check on when it will be available.I checked with my pharmacist and they told me that I had enough for one year. I am going to start taking the Sandoz on Monday and hopefully if it works I will have enough. Also, called Pfizer for the 30 th time and got a rep from Australia who was very nice and told me that it (levoxyl) might be available the early part of 2014. I called the FDA this morning and honestly they have been the nicest to deal with. The number for the FDA is 1-855-543-3784.. They will you back and it will come up as private. They did not show any recalls on the levothyroxine. Keep calling Pfizer and the FDA and maybe they will pay attention. I hope the Sandoz becomes available for all who need it.

September 11, 2013 at 2:23 pm
(865) Karen says:

For those of you in San Diego or CA (Pauline?) Stater Bros has a good stock of Sandoz in their warehouse. They still tell me they cannot order a new supply. Production problem. Sandoz problem is NOT registered on the FDA Web Site as of this moment.

KAT: thanks for all your information as well.

September 11, 2013 at 4:30 pm
(866) Stacey Parker says:

Wow, Talk about a Tummy flip of emotions last night, reading updates on here and I said out loud to my Husband “OMG…No this can’t be happening again”…I feel for everyone of you guys on this journey. I personally feel like it has Robbed me of my Summer (as 1 poster put it so nicely into words) and I’m sure each of you feel the same way. Don’t give up, if Sandoz works for you..let’s pull together and see who still has it available.

I called Starter Bros. here in Temecula, CA, last night and was able to pick up script for Sandoz in my dose…luckly, they still have it. I didn’t mention anything to them… I see my Dr tomorrow and may have her write a script for a slightly different dose and order that through Starter Bros as well just to get as much Sandoz on hand as possible.

I am not at my best yet with my Sandoz/Cytomel combo but slowly my journaling list of daily issues are starting to subside into a smaller shorter list. YAY! :)

I refuse to be forced to start all over again, I’ll do about whatever it takes to make sure I get as much of this medication as I can…I’m not going to let them just keep robbing me of every part of my life. So I’ll call all the small pharmacies and find who has what and work on getting as much of the Sandoz filled as possbile. Out of Pocket expense is worth being more stable for 5-8 months than starting completely over AGAIN.

There is also a samll pharmacy called HOPE in my area of “Murrieta/Temecula” CA and I was told by someone they are really good at getting different manufactures filled. I’ll update on their specifics later.

Good Luck Everyone…My Thoughts are out there with you guys!!
Let’s hope this is a very Temporary issue!!

Stacey

September 11, 2013 at 6:56 pm
(867) pauline says:

Karen, thank you for letting me know about Stater Bros. (for the Sandoz stock). After reading these reviews on the site this morning, I contacted Costco mail order pharmacy to see if I could stock up, and they said they now only have the Mylan. However, my local Costco pharmacy DOES have the Sandoz (for now), and I have ordered a 6 month supply.

I don’t know how the Sandoz is working for me as of yet, I go for another blood test in about a month, but either way – at this point I have no other options. My endo suggested my taking an additional half a (75mcg) pill at the weekend, but I felt too jittery so stopped the extra dose.

Good-luck ladies.

September 11, 2013 at 7:13 pm
(868) pauline says:

Just following up from my last post. (Karen), I just got off the phone with Stater Bros. in Poway, and I was told they had no Sandoz (only Mylan). Or, are you referring to one of the other North County stores?

September 11, 2013 at 7:58 pm
(869) Karen says:

Pauline: That was the Poway Store at 486-9995. I talked to them this morning and they said they had plenty of stock in the warehouse. … they even said they had a 90 tab bottle on the shelf in my dose. I just got a 90 day supply , but am now taking Erfa so don’t need it.

September 11, 2013 at 9:07 pm
(870) cabro says:

Lin, You may want to have your free T3 tested before ordering. If your level is much above 3.6, you probably can’t tolerate Armour or other NDTs.

September 11, 2013 at 9:19 pm
(871) cabro says:

I can’t tell you how outraged and enraged I am that Sandoz is coming off the shelf!! It’s just insanity! We ALL need to find a way to call and write our representatives on the federal level. The very lives of people with no thyroid are dependent upon these drugs. And as we all know here, cookie cutter medicine is BS.

Thank heavens I have an appointment tomorrow with the endo and will try to get some 50′s……if there are any left at my Costco to combine with NDT. I got a 30-day supply of 100′s about 10 days ago, “just in case.” Wow. It looks like I will be on Erfa in the future (leftover Levoxyl for now), with an unknown T4 for a base. That’s very frightening.

BTW, I just looked at my Sandoz, and the 100′s are scored. Looks like I can cut them and extend those 30 pills to 60 days (plus Erfa). Since they are scored, that should work, right?

September 11, 2013 at 9:28 pm
(872) Karen says:

Pauline:

Poway Stater Bros Phar may just not have had your
particular strength in stock? I confirmed this evening with the manager Scott that they do have a good supply. If you or someone else came in with a script for the Sandoz brand T4 he would order your dose if available from Sandoz. Looks like you are very well supplied anyway, but if something came up, let me know, we could meet half way and I could give you my next new 90 day supply I will be getting in 2 months. Even tho not using Sandoz, I will stock up on it. in case others nearby cannot get it.

September 11, 2013 at 9:58 pm
(873) Karen says:

Cabro:

I have cut many thyroid pills at the score line and had no problem.
For a while in FL I was ordering the 300 mcg tablet and cutting it in half every day.

Interesting info about the T3 number in post 885. I looked at past labs and found a TT3Mab of 1.0, range 0.8-1.5. Is that the same number and would that indicate I would adjust to dessicated well? I had more labs yesterday to check T3-4
and chol. I hope my TSH is better than 6.63.
My T3 uptake was always normal.

September 11, 2013 at 11:54 pm
(874) cabro says:

Thanks so much, Karen. I figured it was OK. Here I am cutting Levoxyl every 5th day to get my dosage evened out. I just needed a little reassurance. All of this is rocking my boat really badly.l

Isn’t Tt3 (Total T3) just a sum total of the bound and unbound T3? If so, you have no way of knowing what percentage of either one is present. Theoretically, you could have 5% unbound and 95% bound, meaning only 5% of what you have is able to be used by the body! But 1.2 – 2.7 is a typical reference range for that, so maybe we are talking about something different. Does “Mab” stand for monoclonal antibody reagent used in Thyroglobulin testing? I hope your TSH is down right where you want it to be!

September 12, 2013 at 7:50 am
(875) Janet says:

Re: Sandoz generic Levothyroxine

I filled mine yesterday and paid 12.00 for 90 days without using my insurance. I am picking up 180 more today for 24.00, again not using my insurance. My Insurance only allows 30 days at a time at the local Pharmacy I use.

There was NO recall …. I honestly think this issue is a huge amount of people using it now that Levoxyl isn’t available and maybe its just such a big demand and maybe hard for them to supply with all the new RX for it. I urge you all not to panic.

I plan to stay on Sandoz even if Levoxyl comes back. My Doctor told me he got a fax about the low potency issues in Levoxyl and I know I have been feeling hypo for at least 8 months before the recall and blood work showed as much.

My Pharmacy has assured me they have received nothing whatsoever stating there will be an issue in them ordering it and they have plenty in stock right now.

In any event I am set for almost a year. I wish you all luck in finding a Pharmacy that has it. I sure hope everyone does.
Good Luck Everyone…My Thoughts are with all of you. Hang in there!

Thanks again so much, Carol :)

September 12, 2013 at 10:34 am
(876) Carol says:

Janet: You’re very welcome. Thanks for all you’ve written about. I just called my endo to let him know (2nd call) about the Sandoz being out of production and his assistant said “that can’t be”. I said I spoke with Sandoz directly. I told her that there is only one pharmacy (Walgreens) that has a bottle of 100 mcg She said she’d call me back later today after the doctor comes in. She says I can’t split the 100s into 50s and 75s but she’ll ask him.

The assistant said my regular pharmacist (Target) should have called their office immediately when they could not refill my script on Tuesday with the Sandoz. When I went to the Target pharmacy yesterday to see if they had even a few tablets left, they said no, it comes in bottles of 90 and they gave me all 90.

The pharmacist said I should just get the Mylan, All his other patients are “doing fine on it”. And when I said I don’t want to switch generics again and I’d rather not deal with the povidone in Mylan, the pharmacist rolled his eyes and smirked. (Arrogant and very ignorant.) He’s not usually like this with me so I just said thank you & left.

I have considered the compounded but for right now am too tired, too stressed to experiment with anything else.

September 12, 2013 at 11:06 am
(877) Karen says:

Janet:

Agree with you. Again, Stater Bros had a written report from Sandoz that it was a production “delay”. So many more people are now taking it. It will be up to production by October 31.

Cabro:

All the T3 information is new to me. I never had an issue with converting when on Levoxyl. The numbers I gave you were from labs when on Levoxyl in 2011. I will get the written labs on recent T3 numbers today which will reflect the Erfa influence.

So, no need to worry about the Sandoz…God Bless.

September 12, 2013 at 12:24 pm
(878) pauline says:

Karen, that’s strange that I was given incorrect information from Stater’s. Oh well, I’m picking up my supply from Costco tomorrow so I should be ok for a few months. Thank you for the offer of the additional 90 (in a few months), I’ll check back with you closer to the time (unless someone else needs them). What strength are they?

FYI – The Costco wholesale pharmacy (WA) who I spoke with yesterday, supply ALL the Costco pharmacies nationwide (supposedly), so I don’t know who much “stock-pile” the local Costco’s have at this point before it runs out. The pharmacist told me they don’t anticipiate supplying the Sandoz for some time. Very worrying.

September 12, 2013 at 8:23 pm
(879) Karen says:

Pauline:

I don’t understand that either. I first spoke to a lady, then, confused, and a bit discombobbled when I said I was going to publish Sandoz availablity on a Web Site(here), she gave , the Manager.

Let’s hope for the best regarding Sandoz…

September 13, 2013 at 3:28 am
(880) cabro says:

Just scanned the latest comments and will respond more tomorrow. I got some Sandoz 8 days ago so I wasn’t sure what might be happening here locally. Well….long story short, I can only get certain dosages at one particular Costco and not anywhere else that I called, including an independent pharmacy. Like Janet, I ordered my 2 remaining Sandoz refills with cash payment. I can’t pick it up until Sat. and am nervous that it will not get filled right.

It seems that the Levoxyl I am on has a potency isssue. My fT4 is up to 1.93 and that is with an 7.5% dose decrease! Yikes. We are going to blend in the Sandoz that I have and lower my dose – technically a double whammy. Wish me luck. I hope that I don’t have to throw away some of my Levoxyl. :( That would be horrible. It isn’t fresh, and I thought it would lose potency, but this Levoxyl is really potent. Clearly, Levoxyl has, in fact, been having dosage inconsistencies. Sigh. It looks like Erfa will be in my future, but my endo says it has too much T3 in it for me and we will have to add in some T4. Strange because we ditched Armour last year when my T3 was too low. That was with a T4 supplement. I guess things have changed with me.

I do have some other Levoxyl that went through a different distributor, but I don’t know if my endo will let me try it. I go back in 19 days for labs (T4 mainly).

I dread changing. This is all just insanity and so demoralizing for us all. Praying for all of us.

September 13, 2013 at 1:58 pm
(881) Karen says:

Cabro: following your posts – yes this is insanity. I am confident the Sandoz is just a very temporary production issue and there is no need for us to worry. You have prepard well, done your homework well and sounds as if you are well stocked on Sandoz in preparing for another transition. You have an excellent endocrinologist. I am positive you are going to do very well.

.

September 13, 2013 at 5:22 pm
(882) cabro says:

Thanks, Karen. I called Sandoz and the woman was a bit terse. She said an announcement from them will come on Monday. I asked if I could hold out some hope that it will be back, and she repeated, “The announcement…..”

I pray you are right and this is temporary. And I don’t even know if it is the right med for me! I just know it is more and more likely I will need it, or I will need Erfa. Thank goodness my endo is fine with my ordering it.

Still catching up on posts…

September 13, 2013 at 5:28 pm
(883) cabro says:

Karen, Very clever of you to say you were going to post to the website! :-)

Thank you SOOOO much for your words of encouragment! I appreciate them so much and am grateful for you. I worry so about what is down the road, but I need to have faith that I will be taken care of through all of this!

Let me know what your free T3 results were! I may not have computer access tonight, but I will be eager to hear. I can’t possibly scroll down this page on my phone for new posts. It takes forever! I looked for a short-cut but there is only a short-cut to go to the top of the page, not the bottom. Grrr!

September 13, 2013 at 6:20 pm
(884) Karen says:

Cabro:

My free T4 was .6(.7-2.0). My TSH was 9.48. I am six weeks now on Erfa, taking 90 grains per schedule. I don’t know what to do. I did try to see the primary last Monday, I asked her to do labs for that day, but she said she could not see me for the week and she would not order labs until she saw me. So I called another dr and got these labs done on Tuesday, and got results on Thursday. All of a sudden my world is crashing. I stopped the Erfa on Monday, then had crashes like crazy . Cant see another doctor until this Tuesday. This happened so fast . I did not want to mention it here until I tried all day to get help with no success. Maybe you have some ideas. I might go to our local ER clinic to check the rapid heartbeats. There is something going on for sure.

September 13, 2013 at 9:00 pm
(885) Bonnie says:

I’ve been reading the replies and continue to relate, sympathize and pray for everyone here, including myself that we all get through this rough time. Those on Sandoz who are tolerating it and have gotten a good supply should be set until Levoxyl returns.

I was in the hospital last week for a few days. I developed a high fever with an URI, and I was given IV fluids, plus they ran some tests. My ESR for inflammation was 21 points higher then normal range, my TSH was 10 and my T3 was 7 points too low. I blame it ALL on the Synthroid. They did an endoscopy and stretched my hiatal hernia, then did a biopsy, but not sure what they biopsied (the results aren’t in for that yet). Didn’t stay for the colonoscopy. Will do that later on. They put me on Synthroid 25mcg leaving the hospital, but it gave me such a sore throat, I did not get the RX filled. My thyroid US showed a small nodule but it was ok.

I started another compound three days ago and I’m not feeling very well on it. Spike a fever of 99.3 every day. It’s not time release, but in a #4 veggie cap with microcrystalline cellulose. I have inflammation in my ribs and spine with stiff legs and feel so dried out on the compound. Pretty constipated, and my eyes are sensitive to sunlight. Med also seems really strong at 62.5 mcg.
Today I noticed a colored discharge in my underwear, which is probably coming from the medication. Seeing the dr about this issue to have it checked out next week.

All this unnecessary suffering and misery with Levoxyl unavailable. I’m so tired of feeling sick all the time. Trying to stay on the compound for lack of anything else to take. I pray I put some wt.as I’m just getting too thin.
I’ll continue to update and you all do the same.

September 13, 2013 at 10:03 pm
(886) Karen says:

Bonnie: So sorry to hear you were in the hospital. I hope you can get feeling better on the compounded med. If the microcrystalline cellulose does not work, there is another filler I mentioned before that is specific for super sensitive patients: brown rice organic flower. I bought some at a health food store this week and I have no reactions to it like I did with anti inflammatories. And Synthroid…THAT med is awful. Good you did not take it. A pharmacy in Wisc does the compounded T4 with the brown rice flower.

I am going through a little glitch right now myself. My TSH is elevated again – I am not getting enough dose of Erfa. Have to work on that issue. Nothing in life is easy.

Take care and keep us updated on your issues.

September 14, 2013 at 3:36 am
(887) cabro says:

Bonnie, You have just been through the ringer! I’m so sorry and hope you will feel better soon and get a dose figured out. If only some of the “ivory tower suits” at Pfizer could see these posts and realize how people are suffering!!

Karen, You are clearly underdosed. A T4 of only ,7 is scary. I’m so sorry the endo won’t see you yet. I wonder what she would say if she knew about your T4. Did you get a free T3 drawn? I don’t think it will be in range at all, much less at a therapeutic level. :( Thankfully, you are intelligent and can figure out a way to try to get some more T4 in you. I don’t think 1-1/4 grains (75mg) is going to work at all for you. I wouldn’t be surprised if you ended up needed at least 2 grains (120mg) or more. Let us know if or how we can help. You are so dear to post Helen Steiner Rice’s words of wisdom. Thank you so much.

September 14, 2013 at 10:34 am
(888) Karen says:

Cabro:

I am feeling so much better this morning after starting back on Erfa and taking 90 grain. I was off it for 4 days after I had such a bad reaction Sunday. Now I understand that was a reaction from being very low thyroid. It was triggered from too much carbohydrates. I did take 2 days of synthitic Wed and Thurs thinking I should work quickly to get the TSH and T4 levels normal, but I figured out this morning that I mistakenly took a Synthroid pill yesterday. It was round, the same size as Erfa but the light in the room was dim and I did not notice the white color. My husband had put out some Erfa, Sandoz, and Synthroid on the counter – he did not know which one I wanted. I was also “dim” mentally. I had 24 hours of awful Synthroid symptoms as well. Synthroid is the med that should be recalled for corrections, not Levoxyl.

There is always a better tomorrow!

I also should add I have learned that having a good doctor is paramount in taking dessicated. As well as good support on this forum. My endo apt is Tuesday. I found another specialist in dessicated but cannot see him until Oct 18. Grrrrrrrrrrr…I love that. There is always the ER at local hospital. There is an ER doctor who is a specialist in thyroid. Don’t know when he is on duty however, but it is an (expensive) option. I have a $75 copay for hospital ER visits.

Thanks again. This is a glitch, I am not going to let it deter me in my taking Erfa.

Cabro, my husband said “Grrrrrrrrrrrrrrrrrr…” this morning when he could not find the butter spread. He is easy to train! Whisper the collie looked up at him as if to say “Hey, I am the only one who Grrrrs in this house”. All in a day’s life in San Diego, CA.

Have peace every day.

September 15, 2013 at 11:03 am
(889) Elizabeth says:

So now we are waiting for Monday to hear if another desperately needed medication is going to be unavailable. It seems that the manufacturers are gaining a great deal too much power over our health, our lives, and our futures. If they triple the price, what do we do?, If the cheaper alternatives disappear, will we ransom our health at any price? It’s : do as we say or the pill gets it….

Myself, I am killing the time looking into old sewing patterns for hats.
Remember when we all wore hats? Nothing like a hat to cover the places where the hair used to be. I started losing hair when the Levoxl went funny last year. So I grew my hair out in the back to pin up over the worst spots. But now with the switching from Levoxyl to Tirosint to Sandoz it has gotten worse, and I find myself Google-searching hair rats, and how to style hair with a rat, like they did back in the Edwardian times and the forties. I guess I will pretend that it is “retro” and not just plain old-fashioned or desperate.

Anyway, I hope all your pills are efficacious, and may you adapt well to any symptoms you are unable to change.

Elizabeth

September 15, 2013 at 4:03 pm
(890) Karen says:

Elizabeth:

When you get the information about Sandoz, would you please post it on the forum? That would be greatly appreciated.

Sorry to hear about your hair loss, that is frustrating. But I have read that the hair loss due to hypothyroid or thyroid meds WILL grow back, so be encouraged. Also, I am very picky about my hair as well, have lost a little in these med transitions, but I eat no less than the whites of TWO eggs every day. You WILL notice a difference in the strength and health of your hair. Don’t recommend eating all the YELLOWS of the eggs – too much chol! Be sure you are getting all the right minerals and vitamins, too.

Another poster recommended rinsing your hair in vinegar and water after washing. My grandmother used to recommend that so it has to be good!

My hair is very long and I always wear it up. Sometimes I add little wiglets to the back of my head to add curls. Did you ever think of getting one to add fullness to your hair, place it on the c rown, and comb the good hair over it to hide the thinning areas? Knoing that ten more women than men have thryoid problems, and that most of our posters are women(but not ALL) I think you will be bombarded with hair ideas after this discussion.

Keep us updated on your progress – appreciate your info.

September 15, 2013 at 5:44 pm
(891) Bonnie says:

Thank you Karen and Cabro for your comforting words and for the comforting poem. Been trying to keep myself occupied and when my husband is home I do things with him. Don’t feel well enough for walks in the heat or anything to strenuous. Just going day to day feeling unwell much of the time. Still taking the compound (day 5) but is very substandard (and I don’t feel right on it). Everything is substandard to the Levoxyl I was taking before the recall. I had no potency issues with it, and my weight was much better then the 16 lb loss that going off Levoxyl has done to me. Between inflammation and continuous sore throat from the compounded plant based ingredients, and the plant based capsule I’m just trying to cope. The plant based capsule puts more moisture on my tongue but I’m having allergic symptoms as well.. I’ve noted the organic brown rice flour, so we’ll see. My hair has been falling out more, esp. When I wasn’t taking anything, so I’m mindful of that also. I’ll continue to update.
Thanking God for the people on this forum for love and support.

September 15, 2013 at 5:56 pm
(892) Elizabeth says:

Karen:

I get all my best information from this forum. The forum is where I learned about Sandoz. I had never heard of it before. It’s the forum’s Cabro that posted about the Sandoz announcement after he contacted the company. Although my pharmacist said that the problem dates back to July, I personally have been unable to find any information at all about Sandoz’s being or becoming unavailable anywhere. and I am counting on Cabro to let all of us know what happens with the announcement on Monday..

Vinegar is only good for hair if you have hair. With 3 different brands of Levo in one year, what I have are those awful pink shiny patches. I know that it grows back, I lost it before, when I took Synthroid in 2003, but It’s those long months waiting for it that get you down.

Maybe a red hat would be nice, like the ones the ladies in the red hat club wear. [Vogue 7460 is a nice pattern]. I can really tell how much better I am feeling on the Sandoz than on the Tirosint, since I am planning sewing projects and not being depressed over the hair loss. Sorry you are having to be hypo, having just been there in recent months, I can really empathize.

By the way, do you know who makes the active ingredient in the different pills? Is the levothyroxine sodium being imported, or does each manufacturer make its own?

September 15, 2013 at 6:19 pm
(893) Karen says:

Elizabeth: That is a good question for the pharmacist. I have no idea. I see different brands of it on the Internet.

September 15, 2013 at 7:24 pm
(894) Anne says:

Hi All,
I’ve been reading, but have’t commented for a while. Not to repeat much, Sandoz has worked for me for 2 months after the hell I had been thru with the others. I went for my annual phsyical and my doctor emailed my blood test results. She explained that my TSH was low 0.05 – T4 free 1.6, – T3 free 3.1 – T3 reverse 27 H. She suggested I change to T3/T4 Nature Throid supl. My Endo, that I’ve had for 5 years since my cancer Thyroid removal (both sides) has been of no help since the Levoxyl issue. I transfered to Sandoz on my own with the left over refills. Same dose of 75 mcg.
Are any of my friends here familiar with Nature Throid and it’s fillers? Or any info that can be helpful? I’m afraid to go thru misery again. My doctor wants my thoughts. Please help if you can. Thank you!

September 15, 2013 at 8:07 pm
(895) Karen says:

Anne:

See post 482 on dessicated thyroid supplement. A paragraph or two down from top there is a place to click to get the info on the various dessicated brands. Naturethroid is there.

It has a whopping number of inactive ingredients. ..Westhroid P would be a better option as far as non allergic inactive ingredients in my opinion. Also check out Erfa Armour thyroid from Canada. You do need a doctor that knows dessicated .

September 15, 2013 at 9:46 pm
(896) Karen says:

Cabro:

Now…in case I have to stop the Erfa, can that be done easily?
Can I stop the dessicated one day and go on to another synthetic the next? Just want to be prepared in case the doctor says stop.

Thanks.

September 15, 2013 at 10:13 pm
(897) Anne says:

Karen:

I had a feeling that I would hear from you…sure enough. You have been so helpful and caring in this forum. Thank you so much.
I checked 482 and you are so right regarding Naturethroid and Westroid P, same lab …… what a difference in active ingredients. My doctor is also into natrual and I know that she will be able to help. Thanks again!

September 16, 2013 at 2:16 am
(898) cabro says:

Karen, I don’t recall any transition of any kind going from Armour to synthetic. That was 13 months ago. The brain fog from heavy suppression has hidden away so many moments of my life. I think I would remember if there had been a break. Remember, too, that i was on both for 19 months before switching to all synthetic.

Why do you think your doctor might make you stop? I sure hope not! You’ve been through too much and clearly there is nothing else out there for you to take. Being on 1-1/2 grains (90) on your way to 2 grains (120) or more is your plan. I don’t see any merit in stopping in the middle! As long as you are functioning, then you should be able to weather this storm until you get up to 2 grains. Then you can try 2-1/2 if your blood work isn’t up enough.

I hope Tuesday’s labwork brings encouraging news!

September 16, 2013 at 2:27 am
(899) cabro says:

Elizabeth,

I hope someone hears about the Sandoz announcement and posts it. I’m too flaky and indecisive to get anything done unless it is terribly and frighteningly urgent and I probably won’t remember. I seem to be off in my own little world these days. Oh, by the way, I am a she! :-)

I’m so sorry about your hair loss. Up to 3 mg of Biotin will help it grow in a bit sooner. I took it religiously for almost 2 months before I finally could tell it is working. At one point, I was told to use the Appearex brand. But I understand others have luck with other brands, too. I get it at Costco. My hair was thin and stringy by mid-August, after falling out for 2-1/2 months, compliments of the nasty Synthroid. But it’s coming back well now. My dermatologist told me it is about a 4 month process. You sound so wonderfully creative. Good for you for sewing projects to help the situation!

September 16, 2013 at 3:11 am
(900) Karen says:

Cabro:

Just want to be prepared. This past 6 weeks has not been easy on the Erfa due to doctor who did not give me correct dosing, but you are right. There is really nothing else out there.

Tuesday I have an appt only with an endo – only one available so fast. She does not prescribe dessicated, but I need her to see the recent lab work that showed my TSH of 9.48 and free T4 of .7(point 7).
After taking Erfa 4 weeks my TSH went down from 14.77 to 6.63. Then it went up again. I started 90 grain Sat and am going through some sweats I am wondering if there might have been something interferring with the Erfa from Sept 1 to the present. At any rate I am being more careful in dosing. It is also very very hot again here.. I have some other issues – sinus/ ear infection and allergy – but am coping. There is a possibility the cornstarch in Erfa is bothering me.
I think the endo on Tuesday will help. I never had a T3 drawn last week altho requested. She can order that. I would also like to check adrenal issues. The endo who prescribed dessicated is not available until Oct 18. Maybe Tues doctor can push that up for me. I have tried with no success.

Anne: It is MY pleasure to be of help. I check the Forum 2 x a day now that it is so active. If I can answer a question, I like to do it right away.

September 16, 2013 at 3:17 am
(901) Karen says:

Anne: Your TSH at .05 indicates you are too much thyroid. Normal is .3 to 3.0. I don’t know the cause of a too high reverse T3. Cabro would be good for that answer. Did your doctor suggest a lower dose of the Sandoz? Just thinking…interested in her comments .

September 16, 2013 at 7:50 am
(902) Elizabeth says:

Cabro:

Sorry to have referred to you in the wrong gender. My brain is just coming back online after a long period of fog.

My post that mentioned hats and hair was to fill a long silence after Karen’s meadowlarks. I worry when the forum goes silent that it will end…. I have come to rely on it greatly.

The hair problem was just filler, making conversation. I was surprised that anyone answered me, since no one seemed to care about my main problem, which was being almost disabled by the pain in my hips and lower back when I was taking Tirosint.. Honestly, if I can go for a walk, thank you God, I’ll gladly do it with less than lovely hair. A hat, maybe..

September 16, 2013 at 10:28 am
(903) Karen says:

Anne, Elizabeth and All:

To review what foods and drinks interfere with thyroid med absorption see:

http://www.about.com/od/thyroidbasicsthyroid101/a/10-Things-To-Know-About-Thyroid-Disease-Foods-And-Drinks.htm

Coffee interferes with thyroid meds BIG time.

September 16, 2013 at 12:11 pm
(904) Karen says:

Elizabeth:

I will certainly stay with this Forum until Levoxyl comes back or longer. I am sure others will follow suit.

Have not heard form Lin – did you get your Sandoz?

Pauline, IMediject, Carol, Ed???????Big Sisters are watching over you!

September 16, 2013 at 12:41 pm
(905) Karen says:

Regarding the GI symptoms that many reported on Forum, I cannot find the post. I do recall that the gel capsule in Tirsint has gluconate in it, and when combined with sodium it forms a substance that can cause pain and great discomfort as it passes through the intestines.
I will continue to look for the specifics mentioned in that post which I got from BiodMedEE on another Web Site, Cancer Survivors, Inspire.

Also in REVIEW: T4 has a half life of 6-8 days. T3 has a half life of 24 hours.

See post 522 for info on finding compounded phar in your area.

September 16, 2013 at 12:53 pm
(906) Stacey Pthe marker says:

Hi Everyone,

Been reading faithfully on here and sorry to read about Bonnie’s hospital stay, Karen your last week of ups and downs, Cabro’s fogginess, Elizabeth’s Pain and Anyone else who is also struggling with any issue that makes us feel less human and more like a lab rat.

I wrote my struggles with of the T4′s finally decided to stick with one and DEAL with the issues. However, my choice of Sandoz/Cytomel which made my hair feel good, but Everything Else FEEL Horrible, such as Sore, Swollen throat, night Sweats and Sadly Night Mares, also lack of Energy and most of all the Same Horrible Joint and Muscle Pain I felt on Tironsint.

I. too, can’t focus, can’t eat and hurt constently I know my levels are off, I can tell I’m Hyper at night and Hypo during the day. The pain is all the time on Sandoz. Sadly I can’t tolerate anything else. I have tried everything except Armour/Erfa which I am having a difficult time getting in to see an Endo to possibly talk about that option. I have played around with doses allowing 7 to 14 days per adjustment but I don’t think Sandoz is going to work for me, as I Know Tirosint Didn’t Either!

I’m stuck and lost without Levoxyl, I need to travel to Indiana to watch my son play College Football this next month but I don’t know how this going to be possible. And sadly, they don’t see me and my struggles daily to fully understand WHY I am uncomfortable with the thought of traveling. So I’m at a loss as to what to do next, I know I’m getting worse so I just keep switching things around and Dealing with all the issues that come from each.

My husband and I just look at each other and say…”Just Keep Swimming, Just keep Swimming”…..

Stacey

September 16, 2013 at 12:59 pm
(907) Stacey Parker says:

WOW sorry for the name flub at the top…my brain is so off with my eye sight,,,even trying simple things are getting difficult.

I have weired Eye Floaters today..which isn’t New..just got in the way!!!

September 16, 2013 at 3:55 pm
(908) Karen says:

Stacey:

I am on Erfa and per last weeks labs, I am very low on T4. I was not properly dosed and not followed up. I am adding in a little Sandoz T4 to see if that helps. I see an ENT tomorrow who might be able to help me. I also have an ear infection. Ouch. When it rains it pours! The best dessicated endo in this area is not available until Oct 18.

We all know what you are talking about and have probably had the same symptoms at one point in the past months of being off Levoxyl… so we dearly emphasize.

Sounds to me like it is time to do lab work. When I tried Sandoz I had to lower the dose a bit compared to the dose I took on Levoxyl. But…Different folks different strokes.

I would look closely at the inactive ingredients of Sandoz. See post 562. The first two are the same ones that were in Levoxyl so we know you tolerated Levoxyl, those are not the culprits. The other two are the ones that could be bothering you.

The last ingredient is the one that bothers me in that I have the night mares and glucose intolerance from it.
What worked for me was eating a low glycemic index diet, and 6 meals a day. No sweets, no chocolate/caffeine and no alcohol. I cheat a little on choc and eat instead the pudding with no sat fat and no sugar to get my choc fix. . I made sure I was getting enough chromium(green leafy veggies) and selenium. A good multi vitamin is paramount for all of us, especially at this critical time. Lots of water, lots of rest.

Yes I sound like a mother, Bonnie knows me as “Mom Karen”.

We are here to help, listen, and emphasize Love the “keep swimming”, we need encouragement and look forward to hearing more of your comments. Hope you are well enough to go to your son’s football game.

There is always someone listening…

September 16, 2013 at 8:16 pm
(909) Karen says:

Elizabeth – Sorry I missed your hip and back pain while you were on Tirosint. That certainly is paramount to hair loss! I posted a site earlier on what could have been responsible for that. The Tirosint gel capsule contains gluconate which in the presence of sodium turns into sodium gluconate which in turn causes pain in the lower GI/ intestines for some people. I will continue to look for that post.

September 17, 2013 at 7:19 am
(910) Elizabeth says:

Karen:

Trying to be brief in a post about effects of shortages, I said hip pain, but
the hip, as in “hip replacement” would be where the leg joins the pelvis. That joint has no problems. What hurt was more the “hands on your hips” hips. The hip area really. It felt like the muscles tightened and the ligament loosened. Something like the hormone Relaxin would loosen the ligaments, but would Levo cause that? Dunno. I was also hypo, but the next step with Tirosint would have meant adding the 13 and taking 2 very expensive pills, so I switched to Sandoz and increased the dose. And the problem has improved daily. There is much less noise in my back when I sit or bend, and less pain every day, and so I am trying to catch up on all those deferred jobs left over from my sadly idle summer..

September 17, 2013 at 10:34 am
(911) Karen says:

Elizabeth:

I do know that being hypo causes muscle and joint pain and body aches in general. I have never experienced those symptoms you mentioned from any thyroid med itself. But is it is difficult to differentiate between the med or being hypothyroid in where the symptoms are coming from. Especially when you ARE hypo and the thinking process and mood are impaired. Now that the pain is ebbing on Sandoz is good to hear. I mentioned the GI issue with Tirosint because I knew someone who had similar hip area complaints while on Tirosint. A LOT of people here have posted Tirosint complaints.

I have experienced the night mares from some of the thyroid meds, particularly Sandoz. I understand that can happen when the med crosses over into the brain. I don’t have extensive knowledge in that area of research Biology, however, but I will ask two of my pharmacists about that issue. Maybe there is some way to avoid the nightmares. I will HIT the Internet on that issue.

It is paramount to make sure you get some form of thyroxine in your body every day if you have no thyroid functioning either due to surgery or to the thyroid “burning” out. . So I highly recommend not skipping any dose to avoid side effects. Being hypo can cause the lipid profiles to go way out of whack and thus is a great danger to your heart health.

I heard nothing yesterday about Sandoz. My pharmacy still has a good supply in the warehouse but they cannot order any new supply.
I will check the FDA Web Stie now. Nothing was reflected there last week.

Talk to you later…

September 17, 2013 at 10:50 am
(912) Carol says:

I called the Sandoz US Customer Service # (800-525-8747) this morning and asked about the status of the production of Levothyroxine. I was told all strengths are available again (as yesterday) and to check with my pharmacist at the end of this week.

September 17, 2013 at 12:30 pm
(913) Karen says:

Carol:

That is great news! Thank you for checking.

September 17, 2013 at 2:10 pm
(914) Karen says:

Cabro and All:

Disappointing apt with ENT this morning. This ENT did not even know what Dessicated thyroid was! I swear over a stack of Helen Steiner Rice books that is true. He is going to try to up my apt with the dessicated specialist. I am grateful for that.

September 17, 2013 at 2:25 pm
(915) Karen says:
September 17, 2013 at 8:51 pm
(916) cabro says:

Aw, Karen. That is such a shame that a doctor would be so uninformed, especially when you need him to be! Did you get any bloodwork? I really hope you can get your appointment moved up.

Thanks for the Newsletter link. Somehow, I read it recently, probably while browsing.

Re: your post (922) and gelcaps, like those for Tirosint: Actually, “some gelcap makers use gelatin with high glutamic acid content and that forms a monosodium glutamate (MSG) molecule in the presence of any sodium which is pretty much everywhere including the stomach. But it isn’t MSG; it is something that forms MSG basically.” (quoting my friend, as I did in (777)).

September 17, 2013 at 8:52 pm
(917) cabro says:

Carol: Thanks so much for calling Sandoz today. I didn’t remember until 6:45PM. Too late! I am a great literalist, so “I will believe it when I see it!” ;-) And I do hope I see it!! I wonder if Costco is going to only carry Mylan until it sells its current stock. I’m worried they might have negotiated a new contract with Mylan. I guess the end of this week I will call and if they don’t have it, I will go to an independent pharmacy to try to order it. Also, the Walmart nearest me knew what they were doing, so I will try them, too, even though I really don’t like going to that store. It’s underneath a parking deck and kind of creepy.

That said……Saturday I started “blending in” Sandoz with my Levoxyl. Last evening (Mon.) I had three searing hot flashes and the night before I had one. :( Also, I had an upset stomach and diarrhea yesterday, something I only have on very rare occasions. That is better today, but I was considering throwing the Sandoz in the trash. With the light of day, I’m more reasonable. I’ll see how the hot flash scene is tonight. We already know that I was very hyperthyroid last week as to T4. It was 1.93 (!), so I need to not attribute too much to the Sandoz until we get my T4 back down to 1.4 or less. I’ve been on an intense diet and **finally** dropped 6.5 pounds. Someone speculated that without gluten or sugars or other things causing absorption-blocking inflammation, I might be absorbing my leftover Levoxyl more intensely. That makes more sense to me than concerns about any sort of super-potency in my all-but-expired Levoxyl.

Elizabeth, I am so glad to read that with Sandoz now there is much less noise in your back and less pain every day! That is very encouraging. It drives me batty that many doctors seem so clueless about the effects these drugs (fillers?) have on us.

September 17, 2013 at 9:39 pm
(918) Ed says:

Hello All,
I’m watching you too Big Sisters!!
I’ve been here and reading without posting. I didn’t have anything of value to post so I didn’t. But I should have at least said my daily thoughts and prayers are with each and everyone of us who are reading this forum. It’s been a bumpy ride so far. I’m anticipating a time when we get settled in on a med that agrees with us or Levoxyl comes back so we can look back and say we made it.
For now I can report I’m about 5 days into the switch from my dwindling supply of Levoxyl with Cytomel to Forest Armour 60 without any remarkable reactions. Maybe a slight improvement but a bit early to say. Test before the switch were TSH of .31 (.30-5.0 uIU/ml) , Free T4 .70 (.58-1.64 ng/dl) , Free T3 2.8 (2.34-4.2 pg/ml). DHEA and ACTH,plasma were good. The numbers say I should feel good. Been Hypo so long I’m thinking it will take a while to know what close to normal feels like.
I can say for sure from my experience that T4 alone did not convert to enough T3 to keep me going. I did notice an improvement when taking the T4/T3 combination. I lost my long relationship with my Primary Care Provider arguing over it. I’ll find another. Reading these posts helped me to know what wanted to try and it worked. Rather than being lead down the wrong path to prolonged feeling lousy. Thanks to everyone for sharing, it has been a tremendous help for me and will continue to be.

September 17, 2013 at 9:48 pm
(919) cabro says:

Anne, I don’t have experience with NatureThroid but I know someone who is doing well on it. Its fillers are difficult to verify, but regardless of the source they are rather daunting:

List one:
Porcine Thyroid Powder, U.S. Pharmacopeia
Microcrystalline Cellulose
Dicalcium Phosphate
Sodium Starch Glycolate
Magnesium Stearate
Hydroxypropyl Methylcellulose
Stearic Acid
Carnauba Wax
Polyethylene Glycol

List two:
Carnaba Wax, Colloidal Silicon Dioxide, Dicalcium Phosphate, Hypromellose, Lactose Monohydrate, Magnesium Stearate, Microcrystaline Cellulose, Polyethylene Glycol (PEG)-400, Sodium Starch Glycolate, Stearic Acid.

List three:
Colloidal Silicon Dioxide, Dicalcium Phosphate, Lactose Monohydrate*, Magnesium Stearate, Microcrystalline Cellulose, Croscarmellose Sodium, Stearic Acid, Opadry II 85F19316 Clear.

September 17, 2013 at 10:06 pm
(920) Karen says:

Cabro: Post 777 is what I was looking for and did not find. Thank you!

Elizabeth: Disregard post 926. See post 777. Sorry.

Cabro:

hot sweats. When I added it today, the hot sweats surged. I did not get the upset stomach. I also had a rapid heartbeat which has ebbed this evening.

I talked to the Canadian pharmacist today who said stay on course with Erfa, it will all “adjust.” No need for extra Sandoz. He thought the 90 grain was OK at this point. I was not to worry about the .7 T4, it was still normal, and the excess T3 I should have by now could balance it out. The TSH last week was 9.48, still high. T3 was not measured.

I noticed that Westhroid P has a 38/9 ratio of T4 to T3 in lieu of Erfa 35/8 ratio. The inactive ingredients are not bad and include inulin. I must finish the Erfa before I change midstream.

The ENT today declined a T3 lab order, it was not done last week tho I asked for it. The ENT said that should come from the endo. I have a back up primary I will see for that, and HE is from Canada.

Would you be able to take the Erfa without any synthetic supplement?
I hope you can work it all out. I have some hard to control emotions on Sandoz I do not like. Felt like trashing it today too. Westhroid P has the 38/9 ratio and not bad inactive ingredients. It is listed in post 482.

I saw a degree from Georgetown Univ in the ENT’s office today. He never heard of thyroid med from pigs. What is going on?

September 17, 2013 at 11:29 pm
(921) Karen says:

I don’t know what happened in my previous post. Lost a sentence in the beginning. I was referring to adding 25 mcg to my Erfa. Third paragraph I thought I deleted but it did not delete. Must have hit the wrong buttons.

Ed: Great to hear your news. Sounds like you are on the right tract. I noticed your TSH before Armour was .31, that is very close to too much thyroid. Did you have any hyper symptoms?

I thought of Forest Armour myself. I notice it has the 38/9 ratio of T4 to T3. Let’s hope this is going to work well for you. How long will you be on 60 grain? . Hope you have great confidence in your prescribing doctor.

I have hit some glitches, but still going forward with Erfa. I looked back on previous posts and I see I have jumped back and forth a bit on dosing recommended by various doctors. Too many cooks spoil the caserole! Or however that goes. My husband always says”put 2 birds in a basket with ONE stone?” Or “to err is human, to forgive is behind”. I may be getting like him. He is French. English is his 5th language. Good to laugh.

Take care and hope to hear more of your comments.

September 18, 2013 at 3:39 am
(922) Anne says:

Karen:

Rather than changing my Sandoz dosage, my doctor, with a DO next to her name (not my Endo) suggested that I try Naturethroid to get the T3 that I need. I told her that I preferred Westhroid P because it has only 3 inactive ingredients. Thanks to your advice. I’m waiting for her email reply.

Cabro:

I’m going to try Westhroid P because it has only 3 fillers. Same Lab as Naturethroid. Thanks for you input!

September 18, 2013 at 7:40 am
(923) Karen says:

Anne:

Good choice. I will watch your progress carefully. This is by far the purest form of dessicated thryoid other than compounded. It has a ratio of 38/9 T4/ T3. This means that in a 60 grain pill, there are 38 mcg T4 and 9 mcg T3. In Erfa it is 35/8. They have it at Womens Intl Phar. The pharmacies here do not have or order it. Did you find a pharmacy that has it?

I have a script for it, it is my next choice. Erfa has mag stearate. I am glad I started on dessicated and plan to continue. Delivery is faster than the 7 days + from Canada.

Both inulin and med chain trys on Wikipedia publish good benefits. I like getting away from magnesium stearate, which is a cancer toxin listed on CA Prop 65, a law requiring vendors to list cancer causing agents on their label to advise consumers before they purchase it. It is not labeled on prescription bottles -the law says amounts are within safe levels for consumption in that only 1 of 100,000 will get cancer. When you see the whopping number of medicines mag stearate is in, I would be concerned. And, I have a slight allergy to cornstarch, which is in Erfa. I don’t know how I missed Westhroid when I looked at dessicated, but I know it now!

From my experience on Erfa I would recommend labs for TSH, T3 and 4 at two weeks on the first dose, which I assume is 60 grain. And I assume you have no thyroid function at all. If not the case, you will have to educate me on that.

Inactive ingredients again are:

Lactose
Inulin – plant fiber from chicory root (also an ingredient in Metamucil)
Medium chain tryglycerides – raises HDL chol

I hope this works well for you!

Karen

September 18, 2013 at 7:55 am
(924) Elizabeth says:

Cabro and Karen:

I am sure that it is the Levo itself and not the fillers that caused my problems. My stomach begged for mercy every time I took Tirosint, but hip pain is actually considered a (rare) side effect of the drug itself. http://www.mayoclinic.com/health/drug-information/DR602749/DSECTION=side-effects
There being so few ingredients in Tirosint it reduces the possible problem causers to the point where it pretty much has to be the Levo.
Sigh, lucky me, I get male pattern baldness and pregnant female pattern pelvic pain. As I said, I suspect relaxin as the pain culprit. Novartis has recently started making relaxin to give to heart patients in the ER, so if Levo makes relaxin go wonky in the body, it could also account for some of the heart effects when taking Levo.
Thinking all this causes me to wonder if variations in reaction to Levo is caused by the active ingredient being from different sources. Is Tirosint German Levo? or is the active ingredient made in the USA, or China or India? Does anybody [all you silent forum readers ] know where the Levothyroxine sodium comes from? It seems like the answer to the question could really matter.

Karen, have you tried changing when you take the Sandoz, from morning to night? Or taking half morning and half night? I don’t have nightmares on Sandoz, but my brain does wake up early and want to get going long before my body is ready to get out of bed.

Five weeks on Sandoz, blood test today.

September 18, 2013 at 11:41 am
(925) Karen says:

Elizabeth:

A quick look at manufactures of USP levothyroxine powder, and I found this site:

http://www, albaba.com/showroom/levothyroxinesodium.html

I have no idea if these are sources for U. S. brands of T4 or U. S. compounding pharmacies, but it does scare me…I am awaiting a reply from the pharmacist at Womens Intl Phar on your question which is an excellent one. We have been focused on inactive ingredients, now we know for sure the active ingredient could be the source of bad symptoms. Thank you for that input!

September 18, 2013 at 1:02 pm
(926) pauline says:

Really not feeling too good on the Sandoz. Disappointing since I have no other choice at this point. Was really hoping it was going to work out, oh well.

September 18, 2013 at 1:08 pm
(927) Carla says:

Rhonda, thank you SO much for letting us know about the Sandoz shortage. I immediately called the independent pharmacy I use to get the remaining refills on the prescription I have. Since I’ve cut back the dose and now take 1/2 a tablet (and am doing well on it), this should be enough for around 7 months. No way would I ever go back to Synthroid or the Mylan generic, and I don’t think I’d do any better on the other generic (Lannet?). If I can’t get Sandoz I’d have to go the compound route.

Again, thanks Rhonda and thank goodness for this forum.

September 18, 2013 at 1:40 pm
(928) Carla says:

Sent my last post before I’d read the later about Sandoz again being available — still glad I ordered extra. You just never know. I’m beyond gun shy about thyroid meds. LOL

September 18, 2013 at 3:06 pm
(929) Elizabeth says:

Karen:

I couldn’t get the alibaba to come up, but if it’s page after page listing Chinese Levo suppliers, I have seen it in my attempts at research, and been scared.

Honestly, what I really want is some of that there good old fashioned East Tennessee Levo like King used to make (before it was devoured by Pfizer and moved to Florida). I did come across a family owned concern in East TN, Intellectual Property Executives in Kingsport (home of Eastman Chemical) that has a “T4 drug candidate, BCT304, and a Reverse-T3 drug candidate, BCT305, both of which are ready for IND submission.” May they only succeed and be as great as Levoxyl used to be, back in the days when Levoxyl was good.

I agree with Carla, that I am glad I assured my supply of pills when Rhonda gave us the heads up. What I am taking now seems to be getting the job done reasonably well (the side effects are not intolerable, and may abate), so I’d rather have more of what I am taking now, rather than some possibly very different new batch of Levo.

September 18, 2013 at 4:11 pm
(930) cabro says:

I called Sandoz today and the woman said pharmacies should be able to stock all doses by the end of the month….we’ll see how that works out. The way I see it, places like Costco probably just bought a very big supply of Mylan and will reevaluate Sandoz at whatever point they start running low on Mylan. Or maybe the distributor will urge them to order it. Time will tell….At least we should be able to get an independent pharmacy to order it for us by October 1. I hope so.

September 18, 2013 at 4:13 pm
(931) Karen says:

Elizabeth:

http://www.albaba.com/showroom/levothyroxinesodium.html

Try this one…

Pauline: I am so sorry you are not felling well…have you had recent labs? Ever think of trying compounded? We have a great compoinding phar right here in San Diego, San Diego Compounding Pharmacy.

September 18, 2013 at 6:01 pm
(932) Stacey P says:

There! I’ll take my last name out so I don’t write silly stuff when my mind is going all haywire and its not staying on point! LOL!

Karen Thanks for the reply and actually I have been making adjustments to my Sandoz/ Cytomel combo, I Always tirate Down in dose. I knew from others reporting that it seems to have a stonger delievery of T4 in it. As well what I have read of Tirsint.

So as of two days ago I had been on Now HALF of my “Levoxyl” dose of the Sandoz and cut in Half my Cytomel dose. My normal dosing of the Levoxyl/Cyomel had worked perfectly for 8 years plus. So obviously I wasn’t going to increase, on Any of the T4 meds, considering Tirosint and Sandoz have better absorbation or faster delievery of T4, (from what a few people have said) I have titrated down .25 each time I have decided to try a new adjustment to the point where I am now taking Half my origainal dose of Each.

Sadly I know I am probably more Hypo due to doing that. However with the reactions of each med I have had to figure out how to get the T4 in me without all the nasty reactions that seem to stay or get worse with my normal dosing.

September 18, 2013 at 6:02 pm
(933) Stacey P says:

Time will Tell, will say that reading that last filler on Sandoz explains my fluid retention night sweats and my tummy bloat to the max, still don’t the nightmares, Never had that issue Before. Sadly thats why I can’t eat much at all, when I do its protiens & veggies, which of course cause my tummy to get even more bloated but again all we can do for now is….Just Keep Swimming..Just Keep Swimming….I Love that Movie and can hear her voice so clearly saying that line! Hang in there Guys!!!

Not sure if anyone read this..so I’ll just post it for thoughts…

http://boards.medscape.com/forums/?128@@.2a583bc8!comment=1

September 18, 2013 at 8:17 pm
(934) Stacey P says:

Oh also,

I was able to get labs drawn yesterday by a trusted Dr, (just not in a field that can continue to treat me) My Ob-gyn is very smart and I have picked his brain for the 6 years I have lived out here. So I will see in about 8 days or so what my Frees, RT3, TPO, TSH, isulin and growth hormone levels and all of my girlie hormones to see where I am on everything.

I have an Endo appt Oct 7, so new labs in hand will be a good start. :)

Have a Good Evening Everyone!

September 18, 2013 at 9:48 pm
(935) Ellen N. says:

Hello again. It has been awhile since my last post.I want to update on my progress to date. I had my levels checked on August 30th at approximately 4 weeks on Sandoz levothyroxine. I decided to have it checked on the early end (MD suggested rechecking at 4 – 6 weeks}, due to comments stating that people found they required a lower dose than when they were on Levoxyl. I also think that I was starting to experience a little chest pain/tightness and some anxiety.

About a week later, the Doctor’s office called to say my levels were running high and that I should cut back my dose by 1 – 50 mcg pill per week. I was advised to recheck in 3 months. It has been about two weeks now on this new dosage. Except for tweaking the med dose, I am generally feeling a lot better on this drug than any other, possibly even the reformulated Levoxyl, as I was suffering from migranes, hot flashes, mood changes, etc.from about January to July.

It would be most disheartening to find that the Sandoz product becomes unavailable. I paid $62.00 out of pocket for a 3 month supply at an independent pharmacy in Massachusetts. I hope that my MD will write a script for no substitutions next time, but I have heard from others in the pharmaceutical industry that sometimes you have to try a drug for the full 30 days before these exceptions will be honored. That unfortunately was intolerable for me.

I guess I would have to continue to pay out of pocket if necessary and I guess that would be more tolerable than the drug not being available at all!!

Everything is relative. Thanks for all your continued posts. I will update at the 3 month mark. I continue to tolerate concentrated sweets poorly, but that is a small price to pay for generally feeling much better. Also, I continue to follow a gluten free, low lactose diet. I also avoid soy, as it seems to exacerbate cardiac symptoms. Not sure if this is related to thyroid issues or other changes of aging.

Blessings and better health to all concerned.

September 19, 2013 at 3:38 am
(936) Anne says:

Karen:

I haven’t received my script yet. No, I do not have a Thyroid. (cancer) Therefore this is very important to me. I have been checking pharmacies regarding Westhroid P. Cosco and Rite Aid both said that it depends on the dosage as to wether or not they can special order it for me??? I live in Laguna Niguel, not to far from you in SD, so there’s a good chance that you will be able to get it wherever I can. I’ll keep you posted.

September 19, 2013 at 4:42 am
(937) Karen says:

Hi Anne:

Thank you very much! I would appreciate knowing where you get it.

Cabro: Hope your merging the Sandoz with the Levoxyl is going better.

September 19, 2013 at 9:05 am
(938) Dirk says:

Is it possible to gain these drugs via the US, I’m living in Australia and my mom has auto immune disease thats destroying her thyroid and she needs drugs like this to help her stay alive, but there is currently none in Australia the hospitals keep a reserve but will not release them until ur at the point of death.

September 19, 2013 at 12:04 pm
(939) Karen says:

Dirk:

YES definitely, with a doctor’s prescription. You can also order them from Canada, I am dealing with NorthWestPharmacy.com. They have a toll free telephone number on the Web Site. I hope it is good from Australia. I will call them today to verify.

Will get information out on U. S. sources today.

September 19, 2013 at 12:46 pm
(940) kat says:

Hi Everyone…I started the Sandoz (200 ,cg) on Monday. All went well the first day. Second day my blood pressure went very high along with high blood sugars. I was at the Doctor on Friday the 13th (how appropriate) and all was well with my blood levels while still on the levoxyl. Carbo,I am following your advice and cut the pill in half this morning and so far I feel okay. Thank you for sharing. Also, I started having very vivid dreams. Who has time or desire to play cut the pill and fear its reaction when levoxyl worked. When I went through this nightmare thirty years ago and there was not an internet nor any “blogs” fro support I ended up in Cleveland Clinic because all the Doctors here (PA) thought I was “mental” How unfair of Pfizer to do this to us again. Dirk, so sorry about your Mother hope NorthWestern can help. Carbo and Karen and everyone…thank you for all your help.

September 19, 2013 at 1:40 pm
(941) Janet says:

Day 36 On Sandoz Levo and I am doing good. :)

I have had a horrible cold (or the flu) and I am still doing ok. The cough has been just constant but getting better. Husband gave it to me .. We were on antibiotics finished them last night.

…and I had a root canal on the 11th. I noticed I was a lot less nervous about that than I normally would have been. Odd.

I seriously notice no side effects except maybe some dreaming. I’m not sure if it;s the Sandoz Levo but I am dreaming more than I ever have. Not nightmares – just dreams.

It’s not Levoxyl – but it’s ok. I was suposed to have blood work but have been sick for 10 days. I will this week and will post results. I am sure I need to increase it as I still feel a tiny bit hypo.

Now I have to go read and catch up on everybody :)

September 19, 2013 at 2:34 pm
(942) Janet says:

Dirk,

I am so sorry. I hope your Mothers ok.

If it wasn’t against the law I would send you all of my Synthroid and Mylan Levo.

Bonnie;

I am so sorry You were in hospital. I hope you are feeling better.

Ellen N,

WOW 62.00? That’s insane. I paid 12.00 for 90 days of Sandoz Levo not using my insurance. I live near Chicago.

Cabro, thanks for checking with Sandoz. I hope you are doing well.

Anne, did you stop Sandoz?

Karen, I am so sorry your Doctor was so sadly uninformed. Good luck with new one.

Kat,

I am so sorry. This dosing is so hard!! I hope your BP & blood sugar are ok now.

Please take care and thanks so much for everybodys input here and caring. You are all so awesome :)

September 19, 2013 at 8:44 pm
(943) Imediject says:

Finally, some Good News! I’ve been on the Sandoz for a little over two weeks now, and I haven’t had even a hint of a problem! :-) In fact, I’m feeling better than I did when I was on the Levoxyl, and if it proves to be stable over the next few months, I’ll probably stay on it long term. When I picked up the RX last month, I posted a note that it had cost me about $29.00 for a three month supply. Well, something just didn’t feel right about that, so we questioned the pharmacy and would you believe they had ‘forgotten’ to turn it in to our insurance. Turns out, three months ended up costing me $9.00. Now, I can certainly live with that!! :-) It really is good to feel like a human being again, and not have the ‘now what do I try????’ sword hanging over my head!

NOW, for a note about Tirosint. While I was on it, my b/p dropped like a rock and nothing I did could get it straightened out. I finally ended up in the ER where they did labs and my sodium levers were low. Classic hypothyroid. My doctor and I are still shaking our heads about the conflicting symptoms – both hyper and hypothyroid – that went along with the Tirosint. The good thing was that in about seven days after stopping and when I reached the half-life of Tirosint, the problem started easing up. And, every day I’ve been on the Sandoz has gotten better and better. I’m not sure who started the topic of Sandoz here on the list, but Thank You so very much for letting us know about it!! It has literally saved my life as well as my sanity in all of this. :-)

BTW – I have another weird note of Tirosint that I’ll post separately to save space on the post.

September 19, 2013 at 8:50 pm
(944) Janet says:

Imediject

Oh I am sooooooooooo happy for you!!

:) :)

I feel the same way. I think I’ll stick with the Sandoz levo too.

September 19, 2013 at 9:01 pm
(945) Imediject says:

The ‘weird’ thing I mentioned about Tirosint earlier –

I got a letter from a company called “Clinquest Inc.” today. It says that they got my recent report from June 27th about the adverse reactions I had while taking Tirosint. They claim to be performing postmarketing safety surveillance on Tirosint for Akrimax Pharm, to eventually be submitted to the FDA. They list the symptoms I supposedly reported and enclosed a form for Permission for Release of Medical Information. They want the name, address, and phone number of my doctor, as well as my name, address, and signature.

Thing is, I never reported anything to anybody! Something’s not quite kosher here. Was just wondering if anyone else here in the group has gotten any letters like this. I hope ‘they’ don’t hold their breath waiting for personal info, because hell will probably freeze over before that happens. :-)

September 19, 2013 at 9:21 pm
(946) Janet says:

Imediject

That IS very weird. Let hell get icy :)

I googled it and came up with this address & phone:

1 Cabot Rd Ste 180 Hudson, MA 01749 · (978) 562-3731
Find Clinquest Inc at 1 Cabot Rd Ste 180, Hudson, MA.
(978) 562-3731.

September 19, 2013 at 10:31 pm
(947) Karen says:

IMediject:

I got the very same letter today. I reported my experience to them on June 4, nothing earth shattering. I tore the papers up.

If you sign something like that, who knows what other information they will get a waiver on using. I don’t trust that at all.

September 19, 2013 at 10:40 pm
(948) Karen says:

Elizabeth:

I got a response from Womens Intl Pharmacy tonight. The T4 synthetic powder they use comes from Letco.

We need to contact each manufacture to get the name of the source for their T4 powder they use in making their Levothyroxine pills. My first suggestion would be to contact the Levoxyl people. It would be interesting to compare sources of other T4 brands compared to Levoxyl…

September 20, 2013 at 9:13 am
(949) Lin says:

Cabro
My doctor said my t3 was normal at 100. I think that is total t3 and my t4 was 6. If my t3 is normal, will I be able to take ndt. I just stopped taking synthroid 6 days ago. I have been considering trying armour. But very nervous about trying something completely new. That is the longest I have been off thyroid meds is 20 some years. I so miss levoxyl. I need to go back on something soon.
Is there a good compounding pharmacy on the east coast? I don’t even know where to look or one. This would be my only other option if I can’t take ndt

September 20, 2013 at 11:35 am
(950) Karen says:

Lin:

How to find a compounding pharmacy in your area:

http://www.ecompoundingpharmacy.com/

To check their accredation:

http://www.pcab.org/

September 20, 2013 at 11:40 am
(951) Karen says:

Dirk in Australia:

I could not find any pharmacies in the U. S. that ship out of state after only a brief search. Does anyone else have that information?

I think your best bet would be to check with the Canadian pharmicies on the Internet. As I mentioned yesterday, NorthWestPharmacy.com is the Canadian pharmacy I deal with for my Erfa Armour thyroid.

September 20, 2013 at 11:56 am
(952) Karen says:

Dirk:

The toll free number on NorthWestPharmacy.com does NOT work from Australia. You would have to call 1- 604-539-5330. This is not toll free. Ask for the International Department. Their e mail address is published on the Web Site.

They require a prescription that could be e mailed to them along with a photo ID of the patient. Shipping is $49.99, AND they cannot guarantee the shipment if lost or stolen.Shipment takes 7 – 30 days, sometimes longer. They cannot guarantee a shipment time. The thyroid meds are shipped directly from their pharmacy in Canada.

Hope this helps!

September 20, 2013 at 12:31 pm
(953) Imediject says:

Karen,

I think the mystery of the letter from Clinquest has been solved. There’s a toll free number included, which I called. I asked who the information was from because I hadn’t sent in a report. There’s a “Tirosint Adverse Event” number at the top of the letter, and she looked it up. Seems the report came directly from Pfizer. I talked to them in late June asking when Levoxyl might be coming back on the market. In the course of the conversation I said that I’d just been on Tirosint, and I had major problems with the drug, and I was anxious to see Levoxyl back on the market. Well, the person at Pfizer made note of what I had said about my problems with Tirosint, and without my permission or knowledge, sent the report in to Clinquest as a reported Adverse Event. Anyhow, I now know where it came from, and I’m going to mention it to my doctor. But I’m still not interested in handing out my private medical records to anyone. I also know that if I ever talk to Pfizer again, the only thing they’re going to get is my ‘name, rank, and serial number’!! :-)

September 20, 2013 at 12:40 pm
(954) Karen says:

Lin:

This could be a dupe, something happened to my first message.

To find a compounding pharmacy in your area:

http://www.ecompoundingpharmacy.com/

To check their accredation:

http://www.pcab.org/

September 20, 2013 at 12:46 pm
(955) Karen says:

IMediject:

Good thinking! Our medical records are PRIVATE.

Pfizer had no right to foreard your report on to any other company. They also did that to me – I got another letter earlier from Mylan.
This letter from the Tirosint manufacturer was probably generated from Pfizer, too.

September 20, 2013 at 3:08 pm
(956) Karen says:

I spoke with NorthWest Pharmacy this morning regarding a refill on my Erfa and the technician said that starting Oct 1 shipping time from Canada would be 4+ weeks due to time going through customs. First order was received 7 days after order. Is this due to Obamacare? I can only speculate at this point.

At any rate, I would recommend Westhroid P in lieu of Erfa now. I missed Westhroid P(pure) when looking at dessicated. It is available at Costo, a ten minute trip for me. Also Women’s Intl Phar. My AARP insurance would not cover out of state or compounded meds. Westhroid P would be covered because it is made in the U. S.
Westhroid is “pure” with only 3 inactive ingredients which I will list in next post. The ration of T4 to T3 is 38/9 in lieu of 35/8 in Erfa.
That means in a 60 grain pill of Westhroid, there are 38 mcg T4 and 9 mcg T3.

Just wanted to pass that on. I am learning something new every day.

September 20, 2013 at 4:21 pm
(957) Karen says:

Per the Westhroid P.com Web Site, the inactive ingredients are inulin and medium chain triglycerides. If you check out Wikipedia.com on each ingredient, the details about each sound very positive. Medium triglycerides are posted to increase HDL. Just a note: niacin is good to increase HDL as well. I take 500 mg per day to keep my HDL at 50.
Without it, less than 30.

Miss Cabro: I am concerned that we did not hear from you in 2 days!
Lin needs a T3 question answered! Hope you are OK in your transition to Sandoz.

Mom Karen

September 20, 2013 at 5:45 pm
(958) Bonnie says:

Mom Karen,

I’ve been reading the replies. Happy for the people here who have adjusted to Sandoz. I saw where Ed was on Armour. I see the struggles from those of us who are floundering with what to take. I’m still wrestling with the compounds. So much inflammation, I’ll tell you…!
I’ve had two compounds made up in the past two weeks, trial and error to find out what is inflaming me. I’ve been talking to the pharmacist (also Karen) twice a week about not giving up and trying different things. Trying not to give up hope, but this is hardly Levoxyl and my body knows it.

I asked them to take the riboflavin out if the mycrocrystalline cellulose to see if that was effecting my rib and back pain, and tight muscles. They put riboflavin in the filler to make sure the ratio is correct with the medicine. I noticed the yellow color and questioned it. I’ve been having vaginitis (which I never get) issues from the medicine and such lovely stuff. I take it out if the capsule because the capsule inflames me.
I’ll continue after dinner.

September 20, 2013 at 6:46 pm
(959) Karen says:

Hi Bonnie:

Sounds like you have a good pharmacist in Karen. Good to hear your update.

I was on compounded T4 with micro cellulose for 30 days . It is a potent anti inflammatory . Riboflavin too is a potent anti inflammatory. My sinuses drained heaviliy on the mic cell. That may also be draining your ENTIRE body. Could you be experiencing instead the ACTION of the anti inflammatories ? If you are less than a week on the compounded I would doubt your thyroid levels are normal yet, and that MAY be, not sure, causing your tight, sore muscles (and joints) . Gosh, when my TSH was 14.77 my entire body was so sore I cannot describe. One good thing about the anti inflammatories, CRP was bottom low, meaning I had no inflammation left in my body.
Good indication there are no artery blockages.. Hopefully after a certain period these symptoms will ebb or disappear. I am hoping for you. Yes, best not to swallow the capsule.

I cannot forget you are from Sarasota. I lived in Kings Point Sun City Center for 6 years up through May 2012. . I had my F/U medical care at Sarasota Memorial Hospital. Sarasota is so beautiful, love the beaches there, loved the city and the shopping and the restaurants..

RE Post 955. AARP would not cover out of COUNTRY scripts. Good thing I re read what I have written. Sure wish we had a spell check.

Have a good weekend Bonnie. You are in my “prays.”

September 20, 2013 at 8:14 pm
(960) Imediject says:

Elizabeth,

I was reading back through posts, and I saw your note and link on hip pain associated with thyroid meds. When I was on the Tirosint, I swore my right hip was dislocated at times! I’d go to stand up, and have to wait a few seconds to see if I could put my weight on that leg. Kind of felt like someone’s 100 year old grandmother!! lol I never associated it with the Tirosint, but now that I think about it, I haven’t had as much as a twinge in that hip since I’ve been on the Sandoz. By the way, that’s probably the most extensive list of symptoms I’ve seen!

I also know from experience that when my thyroid levels are high, so are my blood glucose readings – as well as correcting is difficult as I almost seem insulin resistant. Low levels, also come with low blood sugars. It’s all about metabolism, and just shows how a messed up thyroid can cause problems with every other part of the body. Happy thyroid – happy body! :-)

September 21, 2013 at 12:10 am
(961) kat says:

Dear Imdiject,,..I assume from your 959 Post that you are a diabetic on insulin. I have been a diabetic for eleven years and work very hard to keep it under control. Along with cancer…the diabetes was a turning point in my life. The levoxyl worked in “perfect” sync with the diabetes. Now I am having a hard stabilizing my blood sugar levels. Carbo I hope you are doing okay and Bonnie I am glad to hear from you. Karen you are always so good at “giving the most helpful information and advice. This is my fifth day on the Sandoz and I am still feeling “hyper.” At least I have a lot of energy and am getting back to life. Thanks again for all your support.

September 21, 2013 at 1:57 am
(962) Ruby says:

Hi Everyone,

I hope you all are doing well. Its been a while since I have been on the site. I think we all need to go to the media and put a fire under pfizer for killing us all slowly. I have tried the media, local council, pfizer and the FDA no one cares. Maybe we should protest? We can pick a day and picket outside our local pharmacy. Maybe that will get some attention?

Talk to you all later

September 21, 2013 at 2:00 am
(963) ruby says:

We need a spokes person like a celebrity to help us fight against Pfizer. Does anyone know anyone famous?

September 21, 2013 at 2:49 am
(964) Coleen says:

Thank you to all who provided information regarding the Sandoz brand. I looked into the formulation and decided to give it a try as nothing else was working. There aren’t many places that carry it so I was very happy to learn my local Costco stocked it. When I went to pick it up I was pleasantly surprised to hear that the cost for 90 pills was only $6.00 and that was without using my insurance…amazing I felt like I won the lottery especially since it worked so well. Fast forward three months to today. Off I went to Costco for a refill and when I get there I’m told they can no longer get Sandoz. I spoke with the pharmacist and he said there was a halt in production and that the price was going way up. He made some calls and thinks he may be able to get it for me but the price is now $32 for 100 pills. Hummm, think something is going on here, see my post #65. First Levothroid, then Levoxyl and now Sandoz and Mylan is being pushed big time. Good luck to all of us, does anyone else feel like their living in a third world country?

September 21, 2013 at 7:48 am
(965) Elizabeth says:

Imediject:

I felt like I was 100 too. I recognized your reference to insulin was because relaxin is a member of the insulin family, and if the pills can affect regular insulin, it can affect relaxin too. That was also my thinking.

I am all alone and car free, so aside from looking old, not being able to get around was a serious crisis for me.

The changes to my vision have made it hard to see, and I am probably going to have to go to the eye doctor before I can make any hats. I hoped that maybe my Mylan glasses or the Synthroid prescription might work, but neither of them did. Trying to read a newspaper, I finally got frustrated and just took my glasses off. I wear expensive trifocals, so it is hard to have to invest in my new vision status if I am not going to be able to keep it. How long will I be able to get Sandoz I wonder?

I tried to ask the Sandoz company where it comes from, but they really didn’t want to talk to me. If the price is rising because of a shortage of the active ingredient, I would like to know what companies and countries are involved. But I intimidate easily, and those folks were really very brusk…

My TSH was 3,34.

September 21, 2013 at 8:35 am
(966) Karen says:

Anne:

I found some information on “inulin”, an inactive ingredient in Westhroid-P:

http://www.webmd.com/vitamins-and-supplements/inulin-uses-and-risks

Anyone with hay fever MAY have an allergic reaction to inulin.

September 21, 2013 at 8:43 am
(967) Karen says:

Lin:

Hope you got the compounding pharmacy info OK. I am seeing an endocrinologist Wednesday and I will ask your T 3 question then.
Cabro has extensive experience in that area, and as you may have noticed she has not posted for a couple of days which is quite unusual. I am a little bit concerned as she was beginning to merge Sandoz with her Levoxyl and her last posts mentioned some problems. Let’s all pray that she is OK.

So, we will get that question answered…

September 21, 2013 at 8:55 am
(968) Karen says:

IMediject:

I have experienced what you mentioned about elevated sugar levels when hypo. Labs taken in July when I had a TSH of 14.77 showed a fasting sugar level of 106. Usually my level is normal when not hypo.
What works for me is a low glycemic index food diet and 6 small meals a day in stead of 3 meals a day.

I have NO documentation to support this, but I truly believe the sodium starch glycolate in Sandoz can be associated with glucose intolerance as well as rapid heartbeats. Whether the rapid heartbeats are standing alone caused by the ingredient or caused by the glucose intolarance(when blood sugar is HIGH heart beat can be elevated) I can only speculate. When I have taken Sandoz I have followed a STRICT low glycemic index diet. It has been thoroughly published by many on this Forum that it is the most tolerable of ALL the synthetics, so that is good.

September 21, 2013 at 9:27 am
(969) Karen says:

Colleen:

Cash price of Sandoz in SAN is double of what it was in May. It is a generic to Levoxyl and Synthroid and most insurance companies cover it. I hope your insurance does cover it.

Sandoz is BACK to normal production. It was published as having a delay in production. It was reported last week by the Sandoz manufacturer as being OK. See post 912 and 930 to verify.

LIN:

You mentioned you had not taken your thryoid med for 6 days, that is way too long to be without it. I hope you will start back on something ASAP.

Armour thyroid has worked well in many. Not to be feared.

Am I imagining things or could some posts have been removed? Post 562/3/4 USED to be inactive ingredients in synthetics. Now they are gone. Post 482 used to be dessicated info. Now gone? What is going on???

September 21, 2013 at 9:42 am
(970) Karen says:

Elizabeth:

I am sorry to hear about your vision problems. Could it be a result of the medication you are taking?

You are never alone…but it can be difficult being without a car although every time I get gas or pay for car insurance I wish I did not NEED a car. I am sure there is some support in that issue either through friends, family, neighbors or your place of worship. If not, ask us. Where there is a will, there is a way.

September 21, 2013 at 10:35 am
(971) Karen says:

Elizabeth:

The normal range of TSH is .3 to 3.0. Many labs are not up to date with those numbers. Your 3.34 is not too far out of line, but the T 3. T4, Free T3 and T4 , thyroglobulin and other thyroid labs must be tested to get the entire picture.

Did you see Mary Shomen”s “Synthroid – acacia and lactose”? Just key that into the search engine above on this Forum and it could explain why you did not tolerate Synthroid. I did not tolerate it at all.

Let’s hope you get that red hat made and please send us a picture!

September 21, 2013 at 10:59 am
(972) Elizabeth says:

Karen:

I don’t really have a vision problems so much as a lens problem.
My eyes improved greatly on Levoxyl, so the lenses that I had when I was taking Mylan were way too strong. I think the Sandoz I am taking now may have actually improved my vision, enough that it’s easier to read without glasses than with. It’s spending $500 for Sandoz lenses that’s a problem, if Sandoz may go the way of Levoxyl, Unithroid and the others. The floaters on Sandoz are about the same as on Levoxyl, I had far fewer floaters when I was taking Tirosint.

And sometimes you are alone, and sometimes you aren’t. It’s good to be able to adapt. Family, friends and neighbors, they come and they go. I really envy you the collies though. I used to have collies when I was young. Now I have cats.

September 21, 2013 at 12:52 pm
(973) Karen says:

Elizabeth:

Post 562 has information on Synthroid – acacia and lactose.
Good to know it is a lens issue and not otherwise!

When hypo my vision is blurred and color is not bright. I know what you mean about vision and thyroid.

Have a good weekend! See Post 506 for some laugh medicine in case you have not seen it..

September 21, 2013 at 1:13 pm
(974) kat says:

Dear Ruby and everyone…Still feeling full of energy on the Sandoz. If I do not take off some weight now I never will. Really, I follow the “diabetic” diet every single day. However, Ruby I agree with you about getting media recognition on the entire thyroid situation medicine shortage and issue. Pfizer is really a mega giant in the” “drug-producing” world but someone has to be aware and care. I am an idealist but I am really going to ponder your suggestion Ruby. Now that I am buzzing with “energy” we can all meet down in D.C. and not only meet our government but protest our cause. I wish I had hit the powerball on Wednesday because we would have our levoxyl back one way or another.The truth is that is what the entire system is about money, money and more money. Thanks again for all your help.

September 21, 2013 at 2:20 pm
(975) Canto says:

Hi, Lin, Honestly, I don’t know how to interpret Total T3. My doctor does not use it. My understanding is it is the sum of both bound T3 (unusable) and unbound (bio-available). One has no way of knowing how much of either is there. In other words, in the Total is the unbound that you need sufficient? I would request a “free T3″ test to get an accurate picture if what is actually going on in your body with T3 before deciding to try NDT. If your doctor won’t run it (which is a typical dodge when they don’t understand T3), try getting your levels checked on your own. A friend of mine uses a lab service called Canary Club. But most urban areas have walk in labs.

Sorry I haven’t been online much. Thanks, Karen, for the heads up.

September 21, 2013 at 2:46 pm
(976) Lin says:

I left message for my dr to see if she would run that free t3 blood test. I missed her call. I won’t be able to talk to her until Monday. I did get info on compounding. I have not taken anything meds since last Saturday. I actually feel so much better I guess since I m not dealing with inactive ingredients. No more fluid retention, no more gas or bloating issues, nd no neck pain. Only thing I notice is pain in the joints of some fingers, I started noticing that when I ran out of levoxyl nd started trying other levothroxines, ino I never had as much as the 100 mcg I was taking of levoxyl. I am hoping I can take the ndt meds.

September 21, 2013 at 4:36 pm
(977) betsy says:

wondering if anyone is like me? had thyroidectomy in mid 70′s, was stable on armour & maybe thyrolar?? can’t really recall that far back,in late 80s was diagnosed w/graves disease stayed pretty stable for a while then went into afib / had RAI 131 in mid 90s think I was more or less forced into it by endo—-my own fault did not research & really didn’t ask ??s I believed the dr, although I must admit I loved being hyper I felt so great, I do remember after the RAI treatment I said I will be spending the rest of my life on the couch=so true, was on levoxly for several years then switched to mylar levo, have had several on-off bouts of really bad depression & now its anxiety & most of the hypo symptoms havnt found a dr or endo who will listen to ME/ instead of the blood test results so glad I found this site have learned a lot reading all the posts. if someone has a history near mine please respond =NEED help on how to handle this & sound like I know what I am saying !! thanks for thios forum

September 21, 2013 at 4:47 pm
(978) cabro says:

Janet and Imediject, I’m so glad you are doing well on Sandoz!

Karen, good thinking to seek out the T4 sources for these companies.

Imediject, I agree that I would tear up the papers. They might persist with more, though. I got calls from Sythroid because I had mentioned adverse Synthroid reactions to the person who answered the phone at Pfizer/Levoxyl. They are required by the FDA to report your report of negative side effects if you name another product. I answered a few of Abbott/Synthroid’s questions, but when they got too personal, I shut them down.

A few hours ago, I sent a post from my phone, after scrolling for ages, and I see it hasn’t shown up. I’ll start a new post and repeat.

Thanks so much, Karen, for your concern over my being MIA! I am so distressed by my weight gain that I am dieting with 1000 calories or less (!) and going to the gym to walk on the treadmill and try a few exercises. Always good to have other people around for an old lady when she starts a new exercise program! ROFL So my free time has been short. I’m also trying to stay off the computer during the wee hours to fix my circadian rhythm. I’ve been scanning the posts but not chiming in.

September 21, 2013 at 4:59 pm
(979) cabro says:

Lin, I am not overly familiar with Total T3, because my doctor doesn’t use it and basically it is a test that doctors run when they don’t understand T3. The test is a dodge. I did some refresher research. Total T3 measures T3 that is bound (to proteins) and T3 that is unbound – the kind that your body can actually use, but it measures them as a total. It doesn’t tell you how much of which one you have. Typically, the bound T3 predominates in Total T3. Bound T3 goes nowhere. It is not used by the body and can’t be converted back into unbound or free T3. In your case, you have come up short. For total T3 the range for normal values is 100 – 200 ng/dL (nanograms per deciliter). You are at the very bottom of the range. To me, that calls for a free T3 test to see if you have free T3 available at all. Measurements of free triiodothyronine (Free T3) will correlate more reliably with your clinical status than total triiodothyronine (T3) levels. Good luck. HTH

September 21, 2013 at 5:14 pm
(980) cabro says:

Betsy, I’m so sorry you are suffering! My sister had Graves but had a TT only. Synthroid only for 3 years. She finally went to a naturopath who is giving her Cytomel (while reducing her Synthroid) and compounded hormones. She is feeling so much better. The challenge would be the cost. I think she said her first round of appointments, including labs and the hormones, was $1500.

Two things come to mind. 1) I would want to know what your Free T3 level is, along with your free T4 and TSH. If your fT4 is above 1.5 and your fT3 is below 3.2, then you could benefit from taking T3 and lowering your levo. I would try to find a doctor who knows how to treat with Cytomel (T3) or with NDT (Armour or NatureThroid). One or the other might help you. 2) I wonder if you are reacting to the fillers. That one is more complex, as you can see from all the discussion above, and involves trial and error, which can be exhausting.

One other thing comes to mind. Do you get tested for Thyroglobulin? Why did you have a TT in the ’70′s?

I hope you can feel better with some changes.

September 21, 2013 at 5:15 pm
(981) cabro says:

HAHA! I am “Canto” above. LOL. Big typo. Sheesh!

September 21, 2013 at 5:30 pm
(982) cabro says:

Wow, Karen, I just read your post that meds coming from Canada will soon take 4+ weeks! That’s insane! I won’t get political here, but suffice it to say I’m very angry. I appreciate your advice to try Westhroid-P. Maybe I will do that if the Sandoz doesn’t work out. I’m doing so-so on Sandoz + Levoxyl. With the big change in diet, it’s hard to tell what is related to what. I have labs in another 10 days or so, so we will see what my T4 is doing. If it’s still up, we will have to totally re-evaluate or go down to 75mcg, which sounds exceptionally low for me.

September 21, 2013 at 6:08 pm
(983) Janet says:

Cabro

I hope you do well on Sandoz. I am feeling almost as good now as I did on Levoxyl on Sandoz but on a lower dose of Sandoz than Levoxyl. Labs next week so we shall see. I am on 88 mcgs of Sandoz was on 125mcgs Levoxyl. I am sure I will have to increase the Sandoz levo after blood work.

It took a couple weeks but I lost 8 lbs 2 weeks after I started the Sandoz levo and then 5 more for a total of 13 pounds lost. I notice a lot of new hair growth now and I feel good!

I now have a horrible cold/flu so I feel horrible. But not from Sandoz levo.

Weird thing is everytime i cough, which is near constant, I taste a lot of salt??? Odd.

I sure hope Sandoz levo works for you.

September 21, 2013 at 6:16 pm
(984) cabro says:

Anne, I really hope the Westhorid-P helps and I will be eager to read your reports.

Karen, my doctor said my high RT3 test result was because my T4 dose was too high. I’m pretty sure there is a lot more to it than that, including ratios and a bunch of other stuff like the body doing itself no favors by converting T4 to RT3 instead of free T3. But I will just go with that until the day finally comes that I am regulated to our satisfaction and then ask for another RT3 test and see.

Someone asked (please forgive me for not being able to remember/find who) if I can skip the T4 with NDT. My endo says I can’t. 2-1/2 years ago, he said that because of thyroid cancer I need a firm, reliable source of T4 to keep me suppressed steadily enough to prevent the cancer from growing. Now he is saying NDT has more T3 than I can manage. ?? But I am on Cytomel because I need T3 – ?? If we go down the NDT path again, I will ask for further explanation.

September 21, 2013 at 6:31 pm
(985) Janet says:

Kat,

I am so happy you are doing well on Sandoz levo. I am too. In my post to cabro I wrote that it took some time to lose the weight I had gained but have lost 13 pounds so far and hoping for more. I eat very healthy and the weight gain started in Jan 2013 for no reason.

I agree with you that it’s all about money. I am and will remain very suspicious about the Levoxyl recalls. I know the potency was low for about a year and I would be happy to meet you in DC to find out why and get Levoxyl back. I wonder how many people would?? I think Phizer should pay for what has happened to so many people. We are like lab rats to them, and it has been hell. Synthroid was the absolute worst for me.

But … honestly, after what big Pharma has put me through with this recall … if I keep doing this well on Sandoz, I won’t go back to Levoxyl.

Hang in there :)

September 21, 2013 at 6:41 pm
(986) Janet says:

Betsy,

I am so sorry and I am sure somebody here can relate to all of your thyroid issues. This board has been so incredible for me – so much help, understanding, information and kindness.

Hang in there and keep coming back here :)

September 22, 2013 at 12:22 am
(987) Karen says:

Cabro:

Be sure to check out my post 965, information on inulin, an inactive ingredient in Westhroid P. You can buy inulin individually in a health store if you wanted to test it before you bought the Westhroid IF you go the dessicated route. That is my plan.

Glad to hear you are back on track! I was just about to welcome our new poster, CANTO, to the Web Site until I saw your posts of today.

I will post the info on medium chain triglycerides in a later post.
All of the info I read sounds good on that. Raises HDL.

I upped my endo apt to Wednesday(from OCT 18) through a cancellation.

September 22, 2013 at 12:48 am
(988) Karen says:

I was given a script for Ciprofloxacin for middle ear infection this week and I trashed it. Inactive ingredients are; cornstarch, micrycrystalline cellulose, silicon dioxide, crosprovidone, magnesium stearate, titanium dioxide, polyethylene glycol, water, hypromollose.

“Thank you doctor, I will take my garlic and Vit C.”

This was the doctor who did not know what dessicated was. Both Z pack and Ciprofloxacin are two antibiotics that should never be given to patients with a heart history as they raise the heartbeat significantly and cause irregular heartbeats.
.
Also we patients who take thyroid meds should be leary of antibiotics which are over prescribed anyway. They can increase absorption of T4. In certain cases they can also decrease it. Some infections heal faster without anti biotics which tear up our intestines.

Did anyone else know that one clove of garlic(NOT the entire bulb) is equal to 500 mg pennacillin in fighting bacterial infections? It also hits viruses and fungus, lowers blood pressure, and helps improve lipid profile. And God made it, not a pharmaceutical company.

September 22, 2013 at 7:33 am
(989) Janet says:

Karen,

I am allergic to so many antibiotic I only take them when its absolutely necessary.

I have taken a Zpack, Levaquin and Cipro with no problem and so has my husband. I guess we’re all different. I’m not crazy about the ingredients but … I have very few choices due to allergies.

I hope your ear heals quickly. I know ear infections can be nasty and you are going through enough right now.

When I’ve had an ear infection I put 4 drops of equal amounts of vinegar and alcohol in my ear and it worked. Thanks Gramma :)

Fell better and take care

September 22, 2013 at 7:43 am
(990) Janet says:

Anybody on Sandoz Levo

Notice awesome finger nails? Mine are growing like crazy and were very hard and brittle. Now they are awesome :)

September 22, 2013 at 8:45 am
(991) Karen says:

Janet:

Unfortuately I cannot use the vinegar and alcohol directly in the ear canal because I have perferated ear drums.But thank you for the reminder! My grandmothers too used to recommend that. I DRINK the apple cider vinegar 50-50 in OJ for infection. So many benefits of apple cider vinegar…

I have used apple cider vinegar and distilled water 50-50 for my collie to clean her ears .

Have a good Sunday,,,appreciate your thoughts.

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September 22, 2013 at 10:41 am
(993) Bonnie says:

I am pretty much like Karen with all of my allergies to chemicals in pills. I never took anything but Levoxyl and a half a Tylenol here and there for headache or flu for 8 years or better. I always got my vitimans from food. This is why I am struggling now with other thyroid medicines because of allergies to everything. Inflammation is one of the responses and sadly with the compound the microcrystalline cellulose is an overkill causing congestion symptoms and more things. Taking the. Riboflavin out took care of some pain issues at least. I gotta find another filler to try. Is it organic brown rice flour or flower? Acidophilus gives me problems and on my tongue causes burning and makes my teeth ache. I guess I was lucky the past 5 years on the batch of Levoxyl I was on gave me almost no problems. You ladies are tring to loose weight and I’m trying to put the 17 lb wt. loss back on. I will go back on Levoxyl as soon as it’s available, hoping the formula is still the same as I was getting before.

I’m hanging in there and still taking the compound putting up with the side effects. Not happy about that but getting thyroid med in me.

September 22, 2013 at 11:52 am
(994) Karen says:

Good Morning Bonnie:

It is organic brown rice flour. I bought some at a natural food store, have made numerous batches of crepes with it and have had no negative reaction.

The compounding pharmacy in Wisconsin that has it is MD Custom RX, 262-373-1050. Perhaps a compounding pharmacy in Sarasota will also supply that filler. Vit C powder definitely will not work as filler, Vit C interferes big time with T4 absorption.

September 22, 2013 at 11:59 am
(995) Ed says:

Hi everyone,

Karen, I was feeling a bit hyper at .3 and even at .7 sometimes a bit jumpy. But to me that’s OK for now. I’m at Armour 60 for about 2 months until testing around end of Oct. I’m sticking with cabros advice and trying not to jump around on the dosing changes too often or quickly and settle in for awhile on one. I think that way I can go with how good I feel compared to what the numbers say. Feeling good might beat what the numbers say if I have a choice, endo seems cool that way.
When I added the T3 Cytomel to the T4 Levo only, I lost those terrible feelings of being on edge and anxious. Irritability and agitation have diminished noticeably by me and others around me. Not so quick to snap as before.

Be back soon

September 22, 2013 at 12:03 pm
(996) Karen says:

Kat:

Re Post 940: when I took Sandoz I had to reduce the dose from 175 mcg which I took on Levoxyl to 150mcg. It varies from person to person. Some have used Sandoz at same dose and done well. Others had to reduce it. One needs to be alert to the hyper feelings.

September 22, 2013 at 3:10 pm
(997) Bonnie says:

Thanks for the information Karen.

I’ll continue to update.

Typing from my phone is challenging at times, but it’s all I have to post here and I’ve learned to copy my replies so I don’t loose them (happens too often).

You are all very precious to me. <3

September 22, 2013 at 7:15 pm
(998) Janet says:

Hi, Bonnie;

I am so sorry about your allergies. I have them too and like you, I rarely take any pills.

I am not trying to lose weight, I’m just trying to lose the extra weight I gained through all this thyroid pill trail and error and the weight I gained when Levoxyl started having their “potency issue”.

I just didn’t want you to assume I was using this as a weight loss pill because I am not. I am just like everybody else here – I want my life back.

See Kats post (973) I think she meant the same thing I did.

Take care

September 22, 2013 at 7:20 pm
(999) Janet says:

Karen – Kat

I had to start on a lower dose of Sandoz levo than I was on Levoxyl and am still lower than I was on Levoxyl. Blood work this week and I will post results.

I was very hyper on 125 mcgs of Sandoz.

I was on Levoxyl .125 mcgs
Now Sandoz Levo .88 mcgs

September 22, 2013 at 7:34 pm
(1000) Karen says:

Ed: Yes feeling good should beat what the numbers say.
Bet you are glad you selected Forest Armour. It is going to take much longer to get Erfa and that concerns me.

I am disappointed in my numbers after 7 weeks. Last TSH was 9.48 and FT4 was point 7. (.7). The doctor did not order an FT3. which was important. I will continue to update. I see a HIGHLY recommended endo in Escondido CA this Wed.

September 22, 2013 at 7:41 pm
(1001) Karen says:

Janet:

Correction: I take apple cider vinegar in my OJ but add only 1-2 TEASPOONS. Not 50-50, that would be AWFUL.

September 22, 2013 at 8:26 pm
(1002) Ed says:

Karen,
I’m saddened to see your TSH is on the high side, FT4 looks good though. I know you’ve been hopeful Erfa would be the Silver Bullet for your Hypo. I sincerely hope the endo you visit Wednesday has a theory as to why! Karen you are well versed on HT, way more so than I. Following are several links that I truly believe has helped me get on track to feeling better. I’m not feeling great but better than I was at my lowest.
This is a link from Mary’s site that made me write a letter to my new endo describing how I was feeling, symptoms, and my choice of treatment options.
http://thyroid.about.com/library/kristen/blkletter.htm
I found the letter very helpful. The doctor was able to more quickly read what I had prepared over a period of days prior to my visit. It was in order and to the point. Had I tried to explain it all while sitting in front of him I would have not covered half of it, not to mention he would have been writing notes while listening. This way he had his notes done for him by me and ready to be placed in my file.
Continued…..

September 22, 2013 at 9:42 pm
(1003) Ed says:

…..continued
One last thing for now that I would like to share.
At my worst and lowest point I was doing good if I slept 3 or 4 hours a night. When I did sleep I was told I snored like a buzz saw and stopped breathing at times. I slept with an Oximeter recorder to measure O2 levels. Came back in the low 80s for the low point. CPAP was recommended. I disagreed because of the articles I had been reading indicated if the Thyroid isn’t working chances are good not much else is working properly either. I wanted to fix the primary root cause not the secondary symptoms. So I bought a 34 dollar Oximeter right after the sleep test. Took it out of the box and stuck it on my finger, got a 95. My wife got a 98. Over the past few months having been able stay on a T4 (old Levoxyl), then adding Cytomel to the T4, and now Armour. My sleep has dramatically improved, I wake up feeling not to bad, and when I put on the Oximeter first thing my feet hit the floor I get a 97 or 98. Conclusion : my lungs were not functioning as well as they could have been had my thyroid hormone levels been aligned. BTW, I don’t snore and stop breathing as before. No CPAP! See 2nd paragraph of post 959, I agree with your last sentence IMediject.
I hope I’ve added some value to the forum by sharing a few of my experiences and observations on my journey through this trying time. I’m sure it’s not over yet.

September 22, 2013 at 10:45 pm
(1004) Ed says:

I forgot to mention. I’ve noticed that when I wake around 4 or 5 AM for the bathroom I take the Armour at that time, I feel better when I get up at 6. As opposed to when I sleep straight through until 6 and get up I don’t feel as good as I would had I taken the Armour an hour or two earlier. Regardless I always wait an hour before eating breakfast after taking Armour, wait 4 hours before taking anything else, Vitamins etc. I want max absorption with no interference also helps keep doses low. IMHO

Janet if your nails are growing like crazy I would take that as a good sign. Seems like Sandoz is agreeing with you. Best wishes

Betsy, many share similar symptoms you are experiencing. I’m sure you’ll find something here that is some form of help to you. Whether it is something that has helped and worked for someone else who came here looking for answers l Ike we all did. Or maybe a comforting sanity check while reading over the message knowing you’re not alone. Most have had the doctors who just won’t listen or think of trying something different. In that case find another until you do. Call your Insurance, see if they have a Nurse Navigator to help find a doctor who will work with you, not just take your co-pay and move on to his next victim. Hang in there.

September 22, 2013 at 11:46 pm
(1005) Rhonda says:

Hello everyone! Well Sandoz is out for me! Went back to the Mylan brand. The first 4 days on it and I felt as if I had been hit by a truck. Every joint felt bruised and my muscles ached so bad. Still having issues with dizziness but not anything like the Synthroid vertigo. Yes, I am definitely one that will be going back on Levoxyl as soon as it is released. I’m  in survivor mode – literally, one day at a time sweet Jesus! Had the doctor run my ferritin levels and sure enough, extremely low again. My ferritin is 7. This is very important because iron is needed for thyroid biosynthesis – convertingT4 to T3. After the birth of my youngest son 12 years ago, I had terrible problems not tolerating my levoxyl at any dose. The great doctors at Mayo explained why iron and low ferritin levels go hand in hand especially for the hypothyroid &/or autoimmune patient. So tomorrow I will be checking in the hospital to have an IV iron infusion to bring my levels up. Hopefully it will work and I will be more tolerant of my thyroid meds and adding a little armour back to the mix. Iron supplements just don’t work. It could also explain my sudden intolerance to my armour, horendous fatigue, the tachycardia episodes, the restless leg jittery feelings, the feeling of hypo & hyper at the same time, etc. It should take about 6 hours to infuse. Being chemically hypersensitive, I am praying for a “side effect” free day. It is so important that ferritin levels are checked when you are hypo. Your thyroid meds just won’t work properly. If this sounds all to familiar to some, I would encourage you to get a base line measurement of your ferritin. You can be iron deficient without being full blown anemic.  My thoughts are with each of you on here. It’s nice to have a place to go where everyone knows what it is like in “hypo hell”. Thank you all for sharing your journey! 

September 23, 2013 at 2:59 am
(1006) cabro says:

Janet, Re: nails – I wonder if being on the right dose with the right numbers is contributing to your nail growth. Nail and hair are the same substance, just in different forms. My hair was falling out when I was on Synthroid this spring. Now that I am back on leftover Levoxyl, mixed with Sandoz, and have been taking Biotin for the hair loss, my nails and hair are both growing wonderfully, so much so that I invested in a manicure!, something I just don’t do. :-)

Ed, Since .3 and .7 are at the low end of the spectrum, it would make sense that you might feel hyper at those numbers. Look to your free T4 for clues/answers. When my fT4 is above 1.5, I start feeling really bad. I’m glad you are on 1 grain (60 mg) of Armour and feeling well!

Karen, Thank you for the info about inulin. If I need to go the Westhroid-P route, I will try some first. In the meantime, I’m reading some of these posts with people who need a lower dose on Sandoz. Sheesh, we are trying to **decrease** my dose, and here half of what I am taking is Sandoz on 2 out of 3 days. :-/ At least I am sleeping well and if I take all of my regular medications along with thyroid, I don’t have heart issues. Time will tell.

September 23, 2013 at 3:19 am
(1007) cabro says:

Rhonda, Wishing you all the best with your infusion. I have spoken with my endo about ferritin and the poor results I have had in the past with Infed I.V. push. He believes that my low ferritin is genetic and that my body is genetically unable to store iron. I hope this is not the case with you. It sounds like you have gotten good info from Mayo (of course!), and being chemically sensitive myself, I join you in wishing for a side effect free day.

I have no thyroid, have Hashi’s and am on T4 and T3. I am taking iron glycinate and selenium daily to help with conversion. Have you tried taking selenium (selenomethionine)?

I’m sorry you don’t tolerate the Sandoz and hope the iron will help even things out for you on the Mylan.

September 23, 2013 at 3:25 am
(1008) cabro says:

Karen, I meant to say how sorry I am that your TSH hasn’t come down enough yet and that your free T4 is only 0.7. That is really low! The LabCorp reference range for fT4 is 0.82-1.77. :(

I am so happy for you that you are getting in to see the highly recommended endo this Wednesday! That’s wonderful that you don’t have to wait until Oct. I will be praying for you. I hope he is as knowledgeable as he is supposed to be and will be able to improve your levels without any nasty side effects.

September 23, 2013 at 3:40 am
(1009) Anne says:

Karen:
Thanks again for your info. There are some negatives in Inulin, but there are quite a few positives. I’m going for it. I finally got a email from my Doc today. She will check on Monday and see if she can get Westroid P ordered for me. (she didn’t say where) I’ll let you know when I find out.

Janet:
I needed T3 and other #’s corrected that I wasn’t getting from Sandoz. I will be trying natural, Westroid P.

Cabro:
See above. Thanks for your good wishes.

September 23, 2013 at 8:44 am
(1010) Karen says:

Ed:

Thanks for that Web Site you posted on 1001. Good information and advice for everyone. I started doing something similar to that a year ago.. My letter starts: “I am here today to…” I will expand on the pre apt letter by following the sample letter in that Web Site.

Good to hear the sleeping and other issues are resolved now that you are not hypo. Your posts have been very valuable!

Cabro: you are so right about the FT4. Too low. Wednesday, hurry up!

Rhonda: VALUABLE info about ferritin. I knew that but NEVER thought about mentioning it. Hope your infusion goes well. This will remind me to make sure I have ferritin level checked. That will be requested in my pre appointment letter.

Anne: The only pharmacy I found that has Westhroid P is Womens Intl Pharmacy in Madison and Phonix. No pharmacy in my area, including CVS, Vons, Costco, Stater Bros, and Sav Mart carries it or will order it.

September 23, 2013 at 10:25 am
(1011) Rhonda says:

Many thanks to you Karen & Cabro!
Iron and thyroxine need each other. However, it would be nice to get definitive answers as to exactly why ferritin / anemia & thyroid disorders are common. Is it because thyroid replacement depletes ferritin or does thyroid replacement inhibit proper absorption of iron, maybe both? I know everyone hypes on optimal vitamin D levels, but I know asymptomatic, healthy individuals that test low on vitamin D. I agree with my kids doctor that maybe the assay that they use to test vitamin D levels are flawed. Don’t get me wrong, it’s important that Vitamin D is optimal but I find it ironic that it seems to be notoriously low in both healthy and non healthy people. It’s worth noting that my youngest who is 12 was diagnosed with Hashimoto’s last year. He has been on replacement and since then has suffered from low iron as well. Having lived with thyroid disease for over 21 years, (post Grave’s disease, treated with RAI), I knew what to look for and had a baseline thyroid panel on all 4 of ky kids when they were little. And last year my youngest got sick and my mommy gut requested it. Sure enough, off the chart antibodies and high TSH. So the other boys were screened. My 16 also tested positive for Hashi antibodies but his numbers are low and his thyroid function is good. But we definitely will keep monitoring him for any changes. Its not a matter of “if”, but more like “when”. The other 2 were negative. My husband also has Hashimotos’s and so do both of his parents. Don’t ever believe a doctor that tells you it’s not genetic – :) It doesn’t mean they will get it, but the risk is most certainly there. Many blessings sent your way – y’all have a great day!

September 23, 2013 at 11:25 am
(1012) Karen says:

Rhonda:

You are certainly a thyroid expert from experience! That is an interesting question about the relationship between Iron and thyroid meds/function. It is well published to take iron 4 hours away from taking thyroid med. I thought the iron would interfere with thyroid absorption, but maybe the iron is destroyed in the process. I will research that. Look forward to your future comments.

September 23, 2013 at 2:45 pm
(1013) Karen says:

cdprinter:

Post 991, yes we have a wonderful group of caring , sensitive, and intelligent people on this Forum! Glad you like it. We are leaning much from each others’ experience and knowledge.

September 23, 2013 at 3:44 pm
(1014) Karen says:
September 23, 2013 at 3:53 pm
(1015) Karen says:

Vit C helps iron supplement absorption, and iron from FOODS does not interfere with thyroid supplementation. Just need to follow: eat one hour before or after taking thyroid med rule.

hthtp://livestrong.com/article/468505-iron-and-thyroid-medications/

September 23, 2013 at 3:58 pm
(1016) Karen says:

HAIRLOSS SOLUTIONS FOR THYROID PATIENTS:

http://www.thyroid.about.com/cs/hairloss/a/hairloss_3.htm

September 23, 2013 at 4:06 pm
(1017) Karen says:
September 23, 2013 at 7:25 pm
(1018) Karen says:

Rhonda:

After I re read my posts I had to explain that I did not mean to sound so uncaring in post 1011 when I said you were an expert from experience. I apologize for that. I am so very sorry to hear of all the thyroid disease history in your family. Even a 12 year old son diagnosed with it? A 16 year old that will get it one day. I never heard of diagnoses so young. Your comments will be extremely valuable to our Forum people as I am sure you have much to share with us. Again forgive me if I sound uncaring.

Karen

September 23, 2013 at 9:37 pm
(1019) Karen says:

Post 1014 over again!

IRON AND THYROID MEDICATIONS:

http://www.livestrong.com/article/468505-iron-and-thyroid-medications/

September 24, 2013 at 2:34 pm
(1020) Laura says:

I haven’t posted since mid-July when I was switched from Levoxyl to Lannett levothyroxine. I was stable on Levoxyl for 12 years post RAI for Graves’ disease. I just was tested and switched from Lannett because of severe lethargy, mental fogginess, forgetfulness, weight gain, depression, etc. Classic hypo symptoms but my test numbers were not just normal, but in the high normal range where I usually feel best. Doctor pulled me off Lannett for 4 days on the chance that I was overdosed. The fog cleared within 36 hours and feel like I had been slowly poisoned by Lannett. I was off all thyroid med for 1 week while I switched and my energy level returned to normal. I am now on Synthroid and so far feel OK but not normal. I had difficulty in July finding a Pharmacy that carried Sandoz in the Houston area. Several said they did, but it was really Lannett. Time will tell if I react to Synthroid too. I am tired of feeling like a lab experiment.

September 25, 2013 at 11:24 am
(1021) Karen says:

Laura:

You might try checking the Sandoz.com Web Site to find a pharmacy in your Houston area that carries Sandoz.

September 25, 2013 at 6:33 pm
(1022) cabro says:

Laura, I’m SO sorry about your experience with Lanett. I had the exact same thing with Synthroid. I felt like I was going through a slow death. :( I hope it is a much better drug for you. I’ve felt like a lab experiment for 4 years, with Hashi’s, thyroid cancer and endless dosing changes, including T3. I do have a wonderful endo now, and he keeps working on it diligently. I had finally gotten to a place that was working well and Levoxyl went bye-bye. I understand that Sandoz should be restocked soon. Maybe you can convince an independent pharmacy to order it for you if the Synthroid doesn’t work out.

Karen, I’ve read that your stomach needs to be empty when taking T4, so it goes straight to the ileum and jejunum for absorption. In (1014) you wrote, “Just need to follow: eat one hour before or after taking thyroid med rule.” It would be best to have at least 2 hours since the last meal and some say longer, especially if it was a heavy meal.

Is anyone having blood pressure problems with all this, i.e. higher than your whole life?

September 25, 2013 at 8:50 pm
(1023) Karen says:

Cabro:

I have been taking med before bed on a very empty stomach, otherwise all my doctors have told me one hour before or after food for any thyroid supplement is OK. It is even on the prescription bottle. I agree they are greatly under estimating this. Better safe than sorry. Two or more hours would be a better rule of thumb. You are RIGHT.

I remember a few posters mentioning higher blood pressure while taking Sandoz though this is something I did not experience.

September 25, 2013 at 9:43 pm
(1024) Karen says:

Cabro:

Forgot to mention: my appointment with the new endo went very well, I was impressed with the doctor and the facility. However, my FT3 was way too high, my FT4 at .8. ………the conclusion was to get off the dessicated. He does not recommend it for people who have had heart surgery even if their heart function is normal as is mine. (Ejection Fraction of 50%) I had been on Erfa for more than 2 months. He supports me in my decision to change to the compounded synthetic T4 with brown rice organic flour, it will be ordered tomorrow. In the mean time he recommended tapering down the Erfa back to 60 grain until the new med comes. I always converted T4 to T3 appropriately so he is happier to see me back on synthetic. And honestly, so am I.

Celery is very good to reduce blood pressure as well as spinach(cooked) and low sodium V8 that has 920 mg potasium in an 8 oz serving. Anything high in potassium and/or magnesium is good. Hope this helps!
.
It is such a shame for all this trialing and experimentation. If Levoxyl were not patented, anyone could copy the formula.

September 25, 2013 at 10:21 pm
(1025) Sue G. says:

I am a new poster who also does best on Levoxyl. I am so glad to have found this site and to be able to communicate with others who really miss our Levoxyl.
I started out briefly on a generic eight years ago, and did not feel that great on it so I was prescribed synthroid for a few years. I developed some severe sinus problems after being on it for some time. The sinus cleared as soon as I started Levoxyl. I have also tried Armour and later Nature-throid, but felt terrible after being on each of them for a short time. Since I have no problem converting T4 to T3, synthetic seems to be the way to go for me. When I could not get my Levoxyl 100mg refilled, I asked my doctor for Sandoz after reading that it is as close to Levoxyl as we can get. I had no problem getting Sandoz through my mail order pharmacy as my doctor specified Sandoz on the script. I have tried Sandoz 100mg several times in the past six weeks, but keep going back to my remaining supply of Levoxyl due to my blood pressure going up and a bad case of tummy ache. I am debating trying a second generic or Tirosent which may be a challenge to get my insurance to cover. Does anyone know which ingredients in Sandoz increases the BP or causes digestive issues? Any thoughts would be greatly appreciated.

September 25, 2013 at 10:51 pm
(1026) Karen says:

Sue G:

It could be the dose of Sandoz you are on is too high. Many including myself who have tried Sandoz , have had to reduce dose they took on Levoxyl when converting to Sandoz.

September 25, 2013 at 11:04 pm
(1027) Karen says:

Cabro:

You posted the inactive ingredients of synthetics and dessicated in Post 562/3/4. These are no longer on my screen – where did they go?

September 26, 2013 at 1:48 am
(1028) cabro says:

It’s moved to 555 and 556, I think?? Let me know. Strange how some things have disappeared or moved……

I’m sooooo pleased your endo appt went so well! It sounds like you have finally found someone who understands all of it and can help you. I know the feeling! I hope the compounded will be excellent for you and that you will feel much better very soon. A T4 at .8 is just not good.

I guess maybe my endo is correct that the Erfa has too much T3 in it for me – ?? I will ask him in 2 weeks to explain that to me. Regardless, he would balance it out with T4 so that I could take it. IF that is where we go next. I’m wondering about Westhroid-P first. Maybe…I am thinking my Sandoz+ leftover Levoxyl might be too much. It might be psychosomatic, too, with all the posts about Sandoz being stronger for some. It’s very hard for me to tell after 2+ years of suppression. I’m kind of hanging on by the bumper of the bus right now, since B/W is next week and endo the week after. He does see and sign off on B/W, so if it is too high I will hear from him before my appt.

Sending you many good thoughts for your new medication to work well for you!

September 26, 2013 at 3:46 am
(1029) Karen says:

Cabro:

Yep, there they are at 555 and 556. Bizarre.

Thank you for your good wishes, Cabro. The compounded T4 will be coming from MD Custom RX in Wisconsin. I found them listed on the http://www.pcab.org Web Site so they are accredited. The Good Pharma compounding pharmacy I used in June and July were not listed in the State of CA. I know now the compounded T4 with Vit C powder was NOT working at all… By July 18 my TSH was 14.77. Womens Intl Phar was not listed in Wisc. That was surprising.

At any rate, know that you can check out a compounding pharmacy by going to the http://www.pcab.org Web Site.

September 26, 2013 at 10:15 am
(1030) Lori says:

Karen,

In general, how much dosage difference have folks been finding between Levoxyl and Sandoz generic levothyroxine. Finally was able to get the Sandoz 112s, and I’m finding them definitely to be too strong.

Not asking for medical advice here, just to know dosage difference folks are finding.

Thanks so much and best to all,

Lori

September 26, 2013 at 11:18 am
(1031) Karen says:

Lori:

In my case I was taking 175 mcg on Levoxyl and I had to go to 150 mcg on Sandoz. I personally noticed some glucose intolerance while taking it as well so I followed a low glycemic index/hypoglycemic diet. That helped a lot. I have been doing that even off Sandoz to cope with the below normal thyroid which also impairs blood sugar metabolism.

I am sure you will hear from other posters who have experience with Sandoz.

September 26, 2013 at 11:55 am
(1032) Karen says:

Cabro:

Thank you for your good thoughts.

The new compounded will come from MD Custom Rx in Brookfield Wisconsin. They were listed on the http://www.pcab.org Web Site so they are accredited.

Will keep all updated on this new experience.

September 26, 2013 at 11:59 am
(1033) Lori says:

Hi Karen,

Thanks for your kind response. I hope you soon find the right thyroid med for you and that you just feel better and better.

Best,

Lori

September 26, 2013 at 1:05 pm
(1034) Bonnie says:

I have a lot to share, and I would respond more then I do if my phone wasn’t the only means to communicate on this blog (frustrating).

Kat- it is always good to hear from you and I hope you are doing alright since it’s been a little while I’ve seen you post. I check for replies a few times a day on here.

Janet- I’m happy that Sandoz Levo is working for you and if this compounding doesn’t pan out soon, I may need to try Sandoz again at a lower dose. It’s so hard without Levoxyl … My body is so lost without it and the struggles continue. As far as wt. issues, I never meant to imply anything except that I am now underweight and wished I had more reserve. I always said if I wanted to loose wt. I didn’t want to loose it through this mess, but of my own desire. The thing is I felt very well a few months ago and I haven’t felt well and like myself since I had to switch medicines. It irks me to no end the pain and suffering I’ve endured and it never ends. I guess my body is still waiting till I give it the right medication when Levoxyl returns. Tragic is what it is. Those that needed to shed some pounds, the thyroid med. helped you which is great.

As Karen mentioned about having Levoxyl’s formula to duplicate it, it would be ideal, but since it’s patented we can’t get the combination to have it duplicated. Well, these aren’t Karens exact words, but I wished like anything the compounds were more like Levoxyl with the fillers. They don’t have the ingredients to make that combination because of Levoxyl being
patented. I’m having an emotional day of tears and issues from the compounding medicine so at least I can share here. Will send this reply and continue..

September 26, 2013 at 1:19 pm
(1035) Imediject says:

Sue G.

Thanks to this group, I ended up on Sandoz after having a miserable six month flop with other thyroid meds – and I’m doing absolutely fanatastic! :-) In fact, I’m doing better now than I did for the past two years on Levothroid or Levoxyl. If my blood work stays stable, I’m going to stick with Sandoz even when/if Levoxyl comes back on the market. I don’t see the need to be a faithful customer and $$reward$$ Pfizer for putting me through this hell, especially when I’m now on something that’s working so well.

As for a lower dose needed on the Sandoz – I don’t think the Sandoz is stronger than the Levoxyl. I think the problem is that what we were SUPPOSED to be getting with the Levoxyl over the past year is the reason for the recall. I was on 137mcg of Levothroid for years and when that went off the market switched over to the 137 of Levoxyl and was doing great. Until the beginning of this year when all of a sudden for some strange reason my TSH went up and I needed 150 of Levoxyl. After the fact when all of this Levoxyl mess came to light, I can now see why. Anyhow, my doctor was aware of this ‘ pre-recall under dosing’ Levoxyl was doing, and started me out on the 137mcg of Sandoz. I’ve had absolutely no hypo or hyper symptoms of any kind, and my blood pressure is excellent. An average for me now that I’m stable on Sandoz is around 110/70. It’s important to keep in mind that when our thyroid dose is too high, high b/p is often a result. And when the thyroid dose is low, low b/p is a problem.

I honestly think the Sandoz levothyroxine is the closest there is for anyone that was stable on Levoxyl, and it just might take a little work on the dose to find what works well for each individual. It’s all different strokes for different folks, so I hope you find the right thyroid med and dose that works for you soon. :-)

September 26, 2013 at 1:42 pm
(1036) kat says:

Dear Bonnie…Karen…Carbo…Imediject and everyone affected by the Pfizer monguls. Bonnie…thank you for thinking about me. I really pray for us all every day. I finally had the courage to take the Sandoz (less than the entire pill) and really I am feeling great. I am a diabetic and have to coordinate everything with the chemicals to work or I really could die. Not being dramatic just stating the truth. So far I am feeling much better. I was like you Bonnie..change of seasons and this entire uncaring mess made me very emotional today. I wrote letters to my gov(ernmental leaders …again/I did some research and found that Pfizer earned 59 billion dollars in 2012. Of course levoxyl is not a big money maker so they do not care. Laura..in my “young” days I had an overactive thyroid and did not lose a pound.I went through chemo and kept both my hair and the weight.(haha).Imediject…I have to agree with you of why the Sandoz ismakin me “hyper.” However, does that mean we have to chemically analyze our meds before taking them. I am still so very upset over this entire mess. I still fell better on the levoxyl but honestly if I keep doing as well on the Sandoz I probably will stay with them. Thank-you all for caring and great information (Karen) and God Bless you all.

September 26, 2013 at 2:23 pm
(1037) cabro says:

I must be one of only a few who did fine on Levoxyl the year before its recall and the only one who is having to LOWER my Levoxyl dose (leftover) now. Strange. I have to think it is me. One thing I know: I continue to confound my doctor!

It’s so nice to read about those of you – Kat and Imediject – who are doing well on Sandoz. Having more than one choice would be sooo nice!

September 26, 2013 at 3:03 pm
(1038) Lori says:

To Sue G and others,

It’s encouraging to hear that you’re doing well on Sandoz, after the dose adjusting. I’m hoping that will be the case for me as well. Only been on Sandoz levothyroxine for 5 days so far — way too strong. When Levoxyl was no longer available, I went on Synthroid. Not good.

It’s a lot to go through, these symptoms. We just want to feel reasonably well and comfortable in our own skin.

Best to all,

Lori

September 26, 2013 at 3:10 pm
(1039) Bonnie says:

Good to hear from you Kat and glad you are doing well. I feel so bonded with the people on this forum and I can’t begin to tell you how much coming here is a Godsend for me. The sharing, support, the hope that everyone here coping until Levoxyl’s return (well that would be me, unless something drastically changes). Please keep sharing Kat. <3

Imediject- I never tried lowering the dose of Sandoz
I started out taking. I tried it several times at half of a 125 mcg pill which was my dose of Levoxyl and there was a difference. Each time my pulse got high (in the 90′s) and I would feel hyper as the day went on. I’d get such a bad headache at my temples and dry heave. Some numbness felt too. Lowering the dose might help this, but I didn’t persue it. Yes, I did say something to the endocrinologist and she called in Synthroid instead (not listening to me). I’m not taking Synthroid and won’t be if I can help it. I felt well on the dose if Levoxyl I was on and didn’t feel sick on it or under dosed. I also think the inactive ingredients in Sandoz that are not in Levoxyl could have been giving me reactions. I may be forced to retry it at a different dose though. Not currently seeing an endo right now for working with compounds and seeing a primary for that, but she can write a RX fir Sandoz if necessary.

September 26, 2013 at 3:16 pm
(1040) Stacey says:

Hello Everyone,

Welcome to any new peeps on here, I know from my first reading to now daily reading of this forum it’s a nice place to sit down and read through and think of what others are going through realizing how much you are not alone. Everyone here has made all of us feel comfortable and accepted discussing any issue we have been struggling with since the infamous recall.

I wanted to jump on and update with my last week and half of what I feel may be success verses struggles.

I could Not tolerate Sandoz no matter how much I had tried, as Karen/Cabro pointed out though the inactive ingredients are similar to Levoxyl there are two last listed and unfortunately for me one or both of them are never going to agree with my body chemistry as much as I wanted them too. The daily night sweats, daily night mares waking me up and leaving me scared to go back to sleep, the joint pain, muscle tightness and the infamous swollen throat or lymph glands with a low grade fever was just too much to tolerate. I tried different doses, different times and adjusting my Cytomel to no avail.

September 26, 2013 at 3:16 pm
(1041) Stacey says:

I have been doing well now for 10 days on Tirosint, titrating my dose upward accordingly as well as my Cytomel. I do have a burning tummy ache in the morning, but it does subside eventually. I No longer have night sweats, no more night mares, no more constant joint pain and my muscle tightness gets better with stretching throughout the day.

I had labs drawn last week (beginning of only Tirosint & Cytomel) so I know they’ll be off a bit, as I continue to stay on this combo and adjust as I feel the need. I still have some ringing in my ears but I will deal with that as I now have a better glycemic tolerance. I don’t get low blood sugar like I did on Sandoz. My BP is normal for me, body temp is good, and I actually am starting to feel like I want to go to the gym again. Something I did before this whole mess started. I weighed 124 in June and Today I weigh 133. So Yes I want to get to where I was!!
I’m hoping I feel well enough to travel soon, to see family. I’ll continue to do what I’m doing and I’ll definitely post my labs once I have them in hand. At this point I am holding steady and feeling much better than I have all summer. My mind, body and soul are starting to find balance.

Stacey

September 26, 2013 at 4:02 pm
(1042) Karen says:

Stacey:

Tummy or lower GI issues ebb with drinking lots of WATER! I am not speaking from my own experience, only from what I have heard from other Tirosint users.

IMEDiject brings up an excellent issue. Many of us, myself included, who had taken Levoxyl for a long time had issues with absorption of T4 that last year before recall and may have upped the Levoxyl dose. So switching that dose to the Sandoz may have been too much since Sandoz has no potency issues. Good reminder IMediject! Goes to show the power of so many good minds working together.

September 26, 2013 at 4:46 pm
(1043) Bonnie says:

Stacy, Lori and Cabro,

Thanks for sharing your Sandoz views as well and Cabro reaffirming Levoxyl’s stability before the recall, well at least the batch I was on from Publics pharmacy was fine. I would love to go back to April 2013 and feel the way I did then without any recall issues that others have mentioned (other then the odor issue, that was the main issue..) I wished this were all a bad dream we could wake up from and nothing had changed.

For Karen- you don’t realize how much your compound information has helped for resources.

There is a lot of sharing on my end and yesterday I had called numbers you listed to ask questions and compare with the compound pharmacy in Sarasota.

According to resources there is no pharmaceutical grade organic brown rice flour but what is at the grocery store. I had to buy a bag of it for a compound they are making tomorrow for me. They are going to reduce the dose to 25 mcg of compounded Levo this time as I’m having strange symptoms of tightening in the ribs and back and other issues that indicate the compound could be too strong. So much more I could share about my compound experience. This is not an easy fix either and I have been hurting and jittery along with other things. The compound effects my GI track, and my bowels. The microcrystalline is out with the new compound. If I still have dibilitating tightness in my ribs and back with inflammation on a lower dose I may not be able to keep taking the compound. I’ve been on it for 2 weeks but have skipped a two days in between compounds. My primary wants to do a mess of labs in 6 weeks to test everything.

September 26, 2013 at 4:52 pm
(1044) Bonnie says:

For Karen-

I tried the regular capsule but that gives me indigestion so I mix it the contents in water.

My bp and pulse have been normal, some low grade fever at times, and no headaches which is the positive. I feel weird a lot though while on this. Could be the strength, well see. Don’t really have options left for getting T4 or a solid plan. Haven’t put on any wt. still at 95 lbs.

Let me know how you are doing with your compound as well. Bless your heart for everything you’ve been sharing.

September 26, 2013 at 5:25 pm
(1045) Karen says:

Lori:

Re post 1036 “Synthroid not good”. See post 562, Synthroid-acacia, lactose, issue. This may explain why you, as well as many of us, did not do well on Synthroid.

I am looking now into the manufacture sources for the various synthetic brands of T4. Only got one answer so far from Womens Intl Phar. Will post research later when completed.

I am Ventilating….

I went to the ENT today and she did suction on left ear and got my hearing back. For a while I was concerned about loss of hearing in that left ear. What a scare. I am ventilating …this has nothing to do with thyroid. She gave me a script for Ciprodex. I got to the pharmacy and the doctor had written another patient’s name on it. Had to call doctor on cell phone to get another script called in. THAT doctor was gone for the day, I don’t know how the office got it authroized. That took an hour Then after another hour’s wait, the pharmacy told me the script was NOT covered by my insurance. Had to go back home(cell phone out of charge) , call insurance company, they gave me the number for the ENT doctor to call to get it approved, there are two in the office. and I MAY get the med within 24 hours. I was also told by my Wisconsin Pharmacy that I would have to MAIL my script in – would take a week. So, got the prescribing doctor to CALL it in. HE is OUT of office for the day, but assistant said she could use the copy of script to call. On my way home from pharmacy I noticed I had no gas – down to the red line, so got into the gas station on fumes to fill up. I did not have my gas card….Grrrrrr…but I had an ATM card that worked which I usually do not carry… Sigh. … Glitches all around today. Thank heavens for my dark chocolate and my forum friends. I am too tired to scream.

September 26, 2013 at 5:29 pm
(1046) Karen says:

There are many good hearts here – it is contagious! You will feel so much better Bonnie when your numbers are are normal. Keep swimming.

September 26, 2013 at 5:45 pm
(1047) Karen says:

Bonnie: good to hear you found a compounding pharmacy that you could supply with the brown rice flour! It WILL work!!! We must both think that. Microcrystalline cellulose is not tolerated by many people. I will forward the Web Site on that when I find it. Right now my brain is swimming! So many posts to go through – more than a thousand and building higher every day on this Forum.

I had more brown rice flower pancakes this morning. No reactions at all except good taste. Lots of B vitamins in it. It has to work. After a couple of hours now away from the ear suction and my hearing is so much better! Thank you God! And Dr. Learn .

September 26, 2013 at 11:16 pm
(1048) kat says:

Hi all…Carbo this one is for you. Sometimes I say things and then have to go back and recant. I am just so frustrated with all the med experimenting.However, levoxyl always worked on me because my blood work on my thyroid was always normal. One question to you Carbo…I know the hyper edgy feeling I am having with the Sandoz is not in my “mind.” I When I take less the “speedy” feeling is so much better. It has to be a filler that eventually I will adjust to. However…once upon a time I used to take a medicine called levoxyl that worked perfect every single day. Then the big bad corporate giant called Pfizer took it away. I am like you Bonnie and sometimes I just wish this was just a dream and our levoxyl would be back in my medicine cabinet. Sorry for being witchy. My favorite holiday is coming. Maybe we can all get on our brooms and fly to see the CEO’s at Pfizer. God Bless and thanks again for unconditional support and understanding.

September 27, 2013 at 1:44 am
(1049) Karen says:

Cabro:

Not much Internet information available on side effects of sodium starch glycolate, an inactive ingredient in Sandoz, except for what I found on this Web Site:

Note in last paragraph “Adverse side effects” that the sodium in SSG
has in some people.

We know the SSG is from potato so there is no gluten, according to the Sandoz Web Stie. Since you mentioned the high B/P in one of your posts I thought you might find this interesting.

http://www.ehow.com/facts-7297163__sodium-starch-glycolate_.htm

September 27, 2013 at 1:53 am
(1050) Karen says:
September 27, 2013 at 11:03 am
(1051) Lin says:

I have stopped levothryoxine, been off of it for 13 days now. I feel much better not having the side effects of those inactive ingredients. I had been thinking about trying armour. I had blood work done this week. My free t3, iron, and cortisol is normal. My vitamin d level is 22. My dr office told me I should take vit d3 tabs (3000). So if my t3 level is normal, does that mean I am not hypothyroid? I didn’t get a chance to speak to the doctor, she is suppose to call me back. I thought I would be feeling fatigued or something by now. But I feel fine. In my original blood tests a month ago she did say I had antibodies. My total t3 was normal than too, that was a test after being off levoxyl a month and trying different brands but not consistently on one

September 27, 2013 at 12:19 pm
(1052) Imediject says:

Kat,

I know what you mean about getting all of the meds/chemicals to work together in harmony. This is my 50 year anniversary for having Type 1 Diabetes, and I’ve always been insulin dependent. Just getting and keeping THAT balance is a full time job. But as my doctor once said – I’m ‘autoimmune’ all wrapped up in one package. It’s 36 years for the Hashimoto’s; the Sjogrens, Systemic Lupus, and Raynaud’s arrived in the early 90′s followed shortly by Sarcoidosis; and then the Celiac’s two years ago and last year the autoimmune liver disease. I know it’s a genetic thing, but Geez Mom and Dad! :-) Anyhow, a long time ago I came to the realization that for whatever reason my body is determined to self destruct, and the best I can do is try to keep all of the remaining ‘parts’ happy and working together. And a messed up thyroid (thank you Pfizer!!) is Not the way to go. When the thyroid levels get out of wack, everything else comes tumbling down as well. So, I’m just Happy, Happy, Happy (yes, I watch Duck Dynasty!! lol) to have things in Thyroid Land returning to normal. I’m just hoping the rest of the folks in the group find what works for them as well, so we can all have a great updoming Holiday Season! :-)

September 27, 2013 at 12:43 pm
(1053) kat says:

Dear Imediject….I have bben a diabetic for 14 years and chose to take the insulin because at the onset of my diabetes I also had cancer return and change of life visited. I faced all of the preceding by making a complete “turn-around ‘

September 27, 2013 at 1:00 pm
(1054) kat says:

Dear Imediject….I have bben a diabetic for 14 years and chose to take the insulin because at the onset of my diabetes I also had cancer return and change of life visited. I faced all of the preceding by making a complete “turn-around” in my life modified diet…exercise…Spartan taking all the chemicals. Had some issues with low blood sugars(20) and was not in a coma but decreased the insulin. However, with this thyroid medicine change you cannot test your thyroid to see what is needed to make it work. I am so sorry to hear about all your health issues. I will say extra prayers for you every night. Hope this thyroid nightmare is over soon. Good luck to you Imdiject and thanks for taking your time to respond. Bonnie…I hope you are feeling better. Carbo and Karen have a nice weekend. I am in PA and it is truly Fall weather and so beautiful.

September 27, 2013 at 1:28 pm
(1055) Stacey says:

Hello Everyone, I hope Today Brings you a good laugh, lots of love, some Peace and Sunshine.. :)

Thank you for the comments and suggestions on the water, I’m currently journaling everything I eat & drink and as of right now, I am taking in about a gallon a day/evening.

However I need to clarify my statement in post 1038. I stated “I could Not tolerate Sandoz no matter how much I had tried”

I need to clarify that, I meant to say, I have tried Sandoz many times, on lower dosing levels through out this entire process since June and sadly it does not agree with me at all, I always dose lower and tirate up slowly.

I understand some were having issues with levoxyl before it was recalled, but I was not. I had steady numbers, great weight, no glycemic issues, no hormonal imbalances what so ever, I was happy, going to the gym and looking forward to summer.

That is until they replaced my script with Synthroid in May. After that disaster I was on here reading, researching and thanking you and all the others for also posting your struggles. That’s when I first started Sandoz, from there I just never could balance the numbers, they were all over the place, not to mention how horrible I felt in such a short period of time. So I jumped around yes, so not cool but every time I went back on to Sandoz I had the exact same reactions and they would not go away even with dropping my dose slowly in hopes in finding my number.

So I’m just throwing out my experience on Sandoz b/c I could not tolerate it at all and want others to realize, if they don’t feel right on it, it may be not agreeing with them. I personally refuse to settle for feeling like h*ell b/c we were thrown a curve ball, whatever their reason.

I’m on Tirosint, I’m not advocating it, I will go back to Levoxyl as soon as its out there, I just wanted to share with everyone what I’ve been through.

Remember we can’t let them beat us down, we need to stay strong and yep you guessed it…..just keep swimming!! :)

September 28, 2013 at 11:45 am
(1056) Bonnie says:

It is so good to read your thoughts as you share your experiences and the heartfelt things shared. I read your replies yesterday Kat, imediject and Stacey. I was having a down day so it warmed my heart to read your thoughts. Thanks for thinking of me Kat. I agree PA is beautiful in the fall. I know I should be thankful that my health is based around my thyroid mostly but the pain and suffering is still here fire me until a medication works in my favor without feeling pain and inflammation every day. I always think how unfair this all is when I remember the good times and well, healthy feeling not so long ago. Today I started my new compound and will share a message I copied to my husband this morning. It goes into detail. I’m sure it will be too long to add to this reply so I will send it next.

September 28, 2013 at 12:14 pm
(1057) Bonnie says:

Here is a message I’m sharing from this morning.
I feel very weird on the compounds but I haven’t given up yet. It’s the inflammation I get on the meds that makes it hard to cope. All the meds except for the Levoxyl I was taking gives me inflammation. I’m went from 62.5 mcg down to 25 mcg. But I can double them to get 50 mcg. I just want to tolerate the medication and it’s very hard with the reactions I’ve been having.

Karen- will you be taking your medicine out of the capsule or leaving it in? I’d like to know your thoughts and thanks.

The inflammation makes my jaws and chewing tight, and I can’t say this was an issue with Levoxyl at all.

The Levo in this compound is Levothyroxine Sodium Pentahydate PCAB accredited pharmacy. Would love to know what Levoxyl Levo was to compare.

My morning:
Took lower dose of med at 8 am. Had toast first. At 9am my ribs were getting tight. Red phantom streaks around my ribcage came up (itchy). I felt very hungry and jittery before 9:30. Had Cheerios and a piece of honeydew 9:45. Ribs felt tighter after that. Felt off balance or lightheaded so I took my blood pressure and it was so low at 10:10. 99/69 bp and p-71.
At 10:30 I took it again and it was 117/76 p-74. Cereal had iron in it so maybe that helped bring it up a little. I’m hungry again which is weird. Rib pain is a little less. I would double the medication if it wouldn’t be for the rib tightness. I’ve been getting light headed a lot on this med and the filler could have something to do with the bp drop. Definite reaction to the levothyroxine itself with red ness that comes out on my skin. I’m playing the day out to see how I am. Good thing I didn’t go to the store as lightheaded as I was feeling, I may have passed out.
As my husband, I always want you to know how I’m doing. I was so hoping I would have little problems on the lower dose.
I have a few things to get at the store so maybe we can go later. Hopefully we can eat out later on.

September 28, 2013 at 3:31 pm
(1058) Karen says:

Bonnie:

Nice to get your update. I first wanted to mention that I believe you could be taking your thyroid compound too soon and not waiting enough time after you take the med to eat. I would follow Cabro’s advice post 1021 in that the thyroid med should be taken on a totally empty stomach(she explains why) and that means no less than 2 hours before or after eating. Better to give it even more time. Taking it before breakfast is probably ideal because you have most likely NOT eaten all night. Disregard the one hour before or after eating on the prescription bottle. It is not enough time.

The filler you took in the first compounded was Avicell, I believe, and it is a potent anti inflammatory. Remember, too, as mentioned by a previous poster, that the levothyroxine itself is capable of producing some symptoms. We cannot alway attribute it to the filers.
The brown rice organic filler should produce no side effects. It is MOST suited for allergic people like you and me. I can’t wait to try it.

I will empty my compounded from its capsule into water and drink it being careful that all the med is taken. I will get it sometime next week. Glad you have an accredited pharmacy.

More later.

September 28, 2013 at 4:31 pm
(1059) Bonnie says:

Good to hear from you Karen. I read where you had an exhausting day filled with nothing but trials. Hope today is a better day.

My husband was playing golf this am which is the reason for the text. Keep him informed.

I’m having my trials on the compounds. I believe I’m allergic to the levothyroxine in the compound. I told my husband if this one doesn’t work out, I’m done. I can always try a lower dose of Sandoz and hope for the best.
I try to keep my whits about and be hopeful but it’s so difficult.

After posting here today I had so much pain with tightness around my ribs, breaking out with itchy red patches, burning throug my feet, and nauseated eating lunch. I feel horrible until the medicine wears down after a fee hours. I believe my thyroid gets inflamed with how the area around my Adam’s apple itch on the medication. I’m not blaming anything on the filler. I was reading about brown rice flour and arsnic with the rice products. I guess ingesting a little wet flour won’t hurt anyone.

Keep me updated on how your doing with your compound and I’ll do the same.

September 28, 2013 at 5:09 pm
(1060) Karen says:

What is the story with rice flour and arsenic? I am not aware of that issue.

September 28, 2013 at 5:37 pm
(1061) Bonnie says:

I read about it online reading information on rice flour. Google it and see what you find.

I have been very lightheaded all day like passing out so I don’t know what that is about except for changing the dose of medicine.

At Carrabas right now, hope I’m ok to eat and all.

September 28, 2013 at 10:52 pm
(1062) kat says:

Dear Bonnie…I feel so sorry for all that you are going through. Believe me just going through this levoxyl nightmare whether we have thyroid (solely), or multiple health issues…it is all such a needless experience when we all had the perfect or near perfect match with levoxyl. I worry about you Bonnie that ithis is affecting your cardiovascular system and believe me I have been there too. I think by sharing and being empathetic we are going to win this battle. I hope you had a nice dinner. Karen and Carbo are the”chemical” experts. I am there for you in any way I can be of help. Carbo…are you still taking the levoxyl and Sandoz “levo”? Are you feeling okay? Imediject..I hope all is well with you. Karen..again many times over thank you for taking your time to do all the research and provide the information to us. I am praying for all of us and still hoping a miracle happens..

September 29, 2013 at 10:53 am
(1063) Karen says:

Kat: Thanks for your kind thoughts…they are appreciated.

I just bumpted into this site, and it was too good not to pass on .
For those who are diabetic on this Forum:

http://www.diabetes.webmd.com/ss/slideshow-diabetes-strength-training?ecd=wnl_dia_0929138ctr=wnl-dia-092923_promo_18mb=

Hope I copied correctly…

September 29, 2013 at 11:51 am
(1064) Karen says:

Stacey:

Hope you continue doing well on Tirosint.

Lin:

How are you doing?

RE: ” Does a normal T3 mean you are not hypo”. A normal T3 is not enough of an indication of not being hypo, you need TSH and T4 levels at least to know for sure, I believe. Let’s see what Cabro sa;ys about that.

Laura: Still doing OK on Synthroid?

Glenna: Have not heard from you in a while. How is the compounded doing? Do you think your pharmacy would use the brown rice organic as filler? I am looking for a CLOSER sourse. None of the accredited compounding pharmacies here in San Diego use it. I am checking other CA sources also. New med arrives next week from Wisc.

I just remembered – I have your pharmacy number on the forum. Hope I can find it!

September 29, 2013 at 11:53 am
(1065) Karen says:

Darn, that diabetes site did not work. I will try again.

September 29, 2013 at 12:02 pm
(1066) Karen says:

For Diabetes Site I posted on 1061, try this:

http://www.diabetes.webmd.com/ss/slideshow-diabetes-strength-training

September 29, 2013 at 2:07 pm
(1067) Bonnie says:

It takes me about 10 minutes to scroll down to the bottom of my phone to reply, lol. I lost my 1st reply and started all over again (grrrrr…)

Dear Kat,

I read your reply last night after we got home, but I had severe diarrhea on and off after we got home and during the night with burning pain down my spine so I waited till today to respond.

I continue to feel lightheaded today with really low BP’s
BP’s that are not the norm for me. Some of it could be the change in dose yesterday so today I went back to the original dose compound although I didn’t take much of it. I realize I need the full dose but I’m so tired of being in pain that I opted to see what the smaller amount would do around my back, ribs, legs and all the inflammation the medicine is causing in my body. There shouldn’t be so much pain from taking a medication for your thyroid. I get so distressed over this whole situation that I can’t fix. I never know how long I can go on living like this before something happens from this whole mess of trial and error with the wrong drugs. I pray for a miracle every day too. Feeling loved and cared about from the support here. Love you Kat. ((Hugs))

I was also wondering about Glenna since we hadn’t heard from her in awhile.

September 29, 2013 at 3:08 pm
(1068) Karen says:

That diabetes site is again not working! I suggest googling “Webmd-diabetes strength training” to see if you can get it. Or subscribe to the Webmd e mail on “diabetes”. It has wonderful information. Never over loads your e mail box. I get the email all the time even tho I am not diabetic.

September 29, 2013 at 6:14 pm
(1069) cory says:

EVERYONE THAT POSTS THEY ARE ALLERGIC TO IODINE AS A SINGULAR WORD/CHEMICAL ARE MORONS. tAKE A LOOK AT THE STRUCTURE OF T4 (AKA LEVOTHYROXINE) AND YOU WILL SEE IT HAS 4 COUNT THEM 4 IODINE ELEMENTS AS PART OF ITS STRUCTURE. IT IS PHYSICALLY IMPOSSIBLE TO BE ALLERGIC TO IODINE AS AN ELEMENT AS IT IS THE SINGLE MOST VITAL PART OF HAVING A FUNCTIONING THYRIOD. IT IS POSSIBLE TO BE ALLERGIC TO OTHER IODINE CONTAINING COMPOUNDS BUT NOT IODINE. HELL YOU CAN EVEN BE SENSITIVE TO IODINE TINCTURE BUT THAT IS NOT AN ALLERGY RATHER A TOPICAL ALLERGIC LIKE REACTION. ANYWAY, I AM TIRED OF RANTING, HAVE FUN RESPONDING PEOPLE.

September 29, 2013 at 11:46 pm
(1070) Karen says:

Hi All:

I found another good site on WebMd. Some of us could benefit from these foods when we are below normal thyroid. Some of us who are pre – diabetic Type II could benefit greatly. My usually normal fasting blood sugar was high when I was below normal thyroid. Here is the Site:

http://diabetes,webmd.com/features/diabetic-diet-6-foods-control-blood-sugar

I hope I have better luck with this post than the others…I will know when it is posted on the Forum.

By the way, JANET, I used some apple cider vinegar directly in the ear and it worked just fine. No problem. However, the ENT did prescribe Ciprodex for infection. Three days now on that, and I am almost all clear. Thank you for your suggestion on that issue.

BONNIE: I will keep you posted on the new compounded T4. I know this diabetic information is not knew to many of you. Hang in there Bonnie you are in my prays.

ANNE: did you get your Westhroid? hope you saw my post stating that dessicated was not recommended for me…

See you later, have a good evening!

September 30, 2013 at 12:04 am
(1071) kat says:

Dear Bonnie and everyone…I am really worried about you(Bonnie.) Again, the issues with the blood pressure just worry me. Honestly…I get more feedback and information from all of you then I do from my Doctors and they are all wonderful and caring people. However, they do not have a thyroid that cannot take the quid pro quo (synthroid) so they do not know how to help us. I hope everything is okay for you. Tomorrow it is back to being the “speed” queen..and trying to figure out how mauch Sandoz to take. It seems like a million years ago that I could just take my levoxyl and be “normal.” Cory…my only reaction to you is that no one deserves to be called a Moron because they may not have all the facts regarding their beliefs. We have to get back to “attacking” Pfizer via phone calls and what ever it takes to let them know we are not going down without a fight. Take care and Bonnie please let me know how you are doing.

September 30, 2013 at 1:51 am
(1072) cabro says:

Hi, All,

I am not able to keep up right now. I *am* having blood work tomorrow. When I get the results probably depends…If there’s a problem, I might hear from the doctor later this week. If there’s no problem, I will likely hear nothing. My appointment is on the 8th. The issues are T4 (too high recently) and sodium (too low recently). I’m on my 4th BP med now, since July – all new to me. So the heart needs to be working optimally with sodium, calcium, potassium, etc. all in correct balance.

Wishing all of you healthier days and better levels. I’ll check back in as soon as I can!

September 30, 2013 at 3:27 am
(1073) Anne says:

Karen:

No, I did not find your post on “dessecated.” I’m upset that I still haven’t heard from my doctor with the Westroid P prescript. I’ll get in touch with her .tomorrow.

September 30, 2013 at 8:51 am
(1074) Karen says:

Cabro: Keep us posted. Our prays are with you. We miss hearing your comments.

Kat: I agree with your views on Post 1067. I am also concerned about Bonnie.

Anne: My labs showed too much T3, too little T4 (below normal).
doctor recommended going back to synthetic. Altho doing very well, I did have open heart surgery 9 years ago. Dessicated is not recommened for patients like me. Glad I tried it. I have more labs today – my arm looks like a sponge! Keep calling that doctor! I am not disappointed at all, only looking forward to something new. I am gratefull I have this forum to talk to about all…it really helps.

Lin: Did you check with your Dr on your question about T3? How do you feel? Keep us posted.

Ed: Hope you are doing well now on Armour!

September 30, 2013 at 9:06 am
(1075) Karen says:
September 30, 2013 at 9:24 am
(1076) Karen says:

Refresher course for all of us: Electrolytes 101

htpp://www.livestrong.com/article/511831-how-to-restore-electrolytes-in-the-body/

We need at least 4000 mg Potassium every day! THAT is hard. I drink low sodium V-8 for some of that – it has 920 mg Potassium in 8 oz glass.

Skimmed milk has 400 mg K, 200 mg magnesium. Any other suggestions ? Bananas of course, but they are high in sugar.
Avacodos, large, could have as much as 1000 mg K per each.
Prunes good for K.

September 30, 2013 at 9:28 am
(1077) Karen says:

Don’t visit that site – I got a “Dangerous Site ” warning by my McAffee. Will get the info to you in another way. Might have to type out the information personally. That is OK with me. It is GOOD stuff!

September 30, 2013 at 12:27 pm
(1078) Karen says:

I was referring site in post 1073. That generated a warning.

Geesh…I am going back to bed!

Secret code when we see a post like 1067 is NWOAR!
(Not worthy of a response). That is just between us posters!

September 30, 2013 at 6:27 pm
(1079) Karen says:
September 30, 2013 at 7:47 pm
(1080) Lin says:

Karen,

I am doing fine so far 16 days with no medication. The dr said my free t3 was normal, she expected it to be low, but said I might still have enough thyroid in my system. She said I could go 2 more weeks and then do blood work again to see what my numbers are then and if I started to feel different before then we could do the blood work sooner. I did find a kcal pharmacy that does compounding drugs. I am still not sure on trying the ndt. My cortisol and iron was in normal range. I did start taking vitamnd3. My vitamin d was 22.

September 30, 2013 at 10:31 pm
(1081) kat says:

Dear All…Carbo…so sorry to hear that all is not well. I hope your doctor helps you get “straightened” out. I did fairly well on the Sandoz. I almost took the entire pill but was scared. The only reaction was a little bit hyper and upset stomach. Bonnie…I am worried that I did not hear from you .. Bonnie…a much faster way to eliminate all the comments is to hit leave a comment and then scroll your way back up. Karen…I totally agree with your stance of no reaction but I just thought at the moment it was deserved. Hope you are feeling better and try to relax.

October 1, 2013 at 3:45 am
(1082) Anne says:

Karen,
I wonder why Dessecated in not good for open heart surgery patients. Besides Thyroid cancer surgery, I’ve had breast cancer (left breast lumpectomy) Radiation caused chronic heart Afib, sick every day for 4 months. Had to have Pulmanary Vein Ablation procedure. When I told my Cardioligist that I was going on Dessecated pills, he said, “keep me posted” Now that you made me aware, I will do some research.
Thanks for sharing

October 1, 2013 at 5:23 am
(1083) Karen says:

Anne:

It is the direct T3 that is a concern. When you take dessicated you get a full immediate blast of T3. This has been published to cause atrial fib in many patients, especially older (over 60) and heart patients.

I was already a TSH of 14.7 7 when I started the Erfa. The 60 grain pill was not enough T4 to get my levels normal. AND I would need more than the conversion chart indicated- 3-4 times the 60 grain to get the correct T4 – thus too much T3 for me. It is an individual thing, ..

I was so sorry to hear you have had both thyroid and breast cancer.From my past 2+ month experience on Erfa, and knowing you already had an a fib issue with radiation, I would in NO way recommend dessicated for you. Your cardiologist SHOULD have been alert to that, but it is not his specialty, so he may not have even heard of dessicated. There are other options, probably compounded, out there, that will work. My neighbor at age 70 was given Armour and TWO times was in the hospital with A FIB. She is now on heart meds for life. She switched to a compounded and is doing well on it.

KAT:

Being that this is a public Forum, we are vulnerable to some people who may make unkind remarks. I experienced that earlier. I will never understand their motivations. We are all savvy to them and I thought what you said was merited. I decided to just ignore the post and go on. We have too many important things to say on this Forum to waste our time.

I will see what other heart info I can find on the Internet that would document my recommendations. Thanks for the hit “leave a comment” button advice!

October 1, 2013 at 10:05 am
(1084) Bonnie says:

Good morning dear friends <3

I found the comment button at the top of the page so we’ll try that and see how it goes. Typing on my phone isn’t as simple as my computer was but this is the only functional thing I have for commenting. My new tablet is great for FB and games but typing on it is super slow its painful. Commenting on here with my tablet us useless.

I welcome anyone who wants to stay in touch with me over FB or email as I can give you my info and you can send messages that other FB friends can’t see on your timeline. I would feel lost without this forum and don’t want to loose contact with others here if this forum is closed at some point. Until Levoxyl comes back this place has been my safety net and we all share vital concerns supporting each other. Getting to know you more personally has been a Godsend and I treasure that. Our mutual bond is through this Levoxyl shortage and mess and I hope and pray that all of us will survive unharmed through all this till our drug for life comes back.
I really care about all of you and how this missing drug has impacted all our lives. I wished I was past all of this and comfortable on one of the other drugs.

I will continue …

October 1, 2013 at 10:33 am
(1085) Karen says:

Bonnie:

I am sure we all feel the same way.

I was going over past posts and found one of yours when you posted you got a new tablet because you had difficulty reading the print on your desktop screen. Did you know you can enlarge the print on your desktop computer? I did not learn this until recently myself. On the bar at the top of the monitor to the right there should be an area with some icons, then “Page” “Safety” “tools”. If you click “Page” then scroll down about 3/4 of the way to “text size” you will see how you can enlage the print. I did it so I could read the Forum better without glasses. Now if I just had a spell check onf the Forum, I would be happy. This is on Windows Seven.

October 1, 2013 at 12:27 pm
(1086) Bonnie says:

Karen,

I don’t currently have a laptop so I use my IPhone to text on here. It’s confusing I know. I can see fine but it’s tedious at times, but where there is a will there is a way. The notebook has larger text but it’s very slow with texting. I can easily read others comments with the tablet.

Dear Kat,

Yesterday was scary. I was so lighted and dizzy and I really needed to go to the grocery store. My BP’s were too low. I didn’t stay on the lower dose compound and find I’m taking about half if the dose I was on with Levoxyl. It doesn’t seem to matter what I do I have difficulties. I was so shaky an hour ago. When I drink the full dose I feel better (but I get chills as well-suspect the large amount of the plant filler which gives me lots of phlegm too). As the day goes on and I eat meals, my ribs really tighten up, my muscles feel tight and my chewing is tighter. All inflammatory in my muscles and allergic reactions in my GI tract. My bowels are really really effected. Red marks come out on my skin over the course if the day and a low grade fever comes in the afternoon. My bp was 114/69 p-85 an hour ago. The past two days it was 98/60 p 70. Quite the drop and I didn’t feel right. I haven’t felt RIGHT since The beginning of May when Mylan was my first experience and the other thyroid meds were introduced into my system after that.
It’s hard to know what to do to feel right. Too many side effects for me. I may try Sandoz at a lower dose, we’ll see. I’m not loosing more wt thank God, but I can’t pick up any wt either. I’m glad you are fairing out well with the Sandoz. Thanks for your caring concern and I’ll continue to update. I expect to see your updates too.

October 1, 2013 at 1:09 pm
(1087) kat says:

Dear Bonnie…I was so happy to hear from you. Not happy to hear that you are still struggling. Honestly, this is my second week on the Sandoz and it is not as bad as last week. However, deciding how much to take is the challenge. I am getting blood work in November. Hope they are okay. Bonnie…I am not on facebook. I do not know if you are allowed to give your e-mail address on this blog. Are you Karen? I will certainly share it with whoever wants it. Let me know. Karen…I was thinking that post 1067 was a MONGUL from PFIZER.(haha) No time for trivial pursuit when we have to aim all of our energy on this levoxyl “mess”. I am going walking to clear my head. Happy October 1st. Where did all the time go? I know I am tired of spending it on being worried about Corporate injustice and pills.

October 1, 2013 at 3:05 pm
(1088) Karen says:

KAT:

Yes, I need to relax! Last Friday was a challenging day, but I did get some Ciprodex samples from the ENT. Insurance OK’d it yesterday which I will keep on file.

There is no reason why you would not be permitted to give your e mail on this blog at all. It is totally your decision. You of course will not be blocked as some offending posters can be . I will watch for it and will e mail you when I see it so you have mine. I have had my current e mail for more than 20 years and feel uncomfortable giving it out on Forum – I would hate to change the e mail if needed. I do have another e mail address associated with my Time Warner Cable I don’t care about making public – I could change it quickly if needed. I have to find that one somewhere in my files.

I posted info earlier about the sodium in the sodium starch glucolate, 4th inactive ingredient of Sandoz, , causing higher B/P in some patients. I hope Cabro saw that. One could always counter that with more potassium. It really is paramount to get 4000 mg a day of Potassium and lots of WATER for good BP.
Celery is great in lowering BP as well as spinach and calcium/mag in skimmed milk. Enough on that…I can’t tolerate the B/P pharmaceutical meds so go to the foods for treatment.

Yep, that could have been a Mongul from Pfizer. They are Mongols for sure. I heard Levoxyl was going to publish in Jan their exact back -on -shelf date. Reliable source from the University told me that.
I am going to copy this forum and forward to Levoxyl today.

I had labs yesterday again..TSH 7.84, FT-4 is .60. Lab did T3 uptake in lieu of FT3. Grrrrrr. I know my T3 is way too high. I may get some Tirosint until the compounded comes. I have some great info to post later on “water”.

Talk to you later.

October 1, 2013 at 3:13 pm
(1089) Karen says:

Bonnie:

With such low B/P which concerns me, have you had your sodium levels checked? You could need MORE sodium in your diet. You have probably not been too hungry with below normal thyroid and not eating as much, that could be causing the weight loss, which is usually the opposite for hypo . You could always try a sport drink with no sugar in it to get more electrolytes or see post 1074 on Electrolytes 101, You have to post the site your self in your browser I could not get it to click on directly from the post.

More later.

October 1, 2013 at 11:00 pm
(1090) kat says:

Dear Karen…you really are truly are a “saint” to do all the work and research for this levoxyl crisis. I worry about you too. You need to “chill” and take a break from being such a wonderful…nurturing person. Bonnie…I hope your blood pressure is stabilizing. My pharmacist told me the same thing Karen that they will be notified by the end of the year of when levoxyl will be available. This week my stomach is all messed up from the change of thyroid medicines but the “speedy” feelings are lessening. I can hardly wait to get the results of the next blood work results. My Doctor is more than understanding and will have to wait until I am back on the levoxyl. I just hope Pfizer does not add or take away ingredients to the levoxyl. I think I am just sick and tired and totally untrusting of Pfizer. Karen…along the journey this year someone “hacked” into my computer and got all my debit card information. I had to file criminal charges and the Bank restored all the money. I will give you..Bonnie and who ever else wants my secondary e-mail address and feel free to write whenever you want. My e-mail address is marymousemom@gmail.com. Maybe the Mongul can send me a delightful note. Tahe care all and thanks again Karen for always being there when needed. If you need me to help just let me know what you need.

October 2, 2013 at 12:07 am
(1091) Karen says:

Got it Kat, and thank you for your very kind words and thoughts. We all need more of that.

Hope Cabro is doing well, our thoughts and prayers are with her.

October 2, 2013 at 2:45 am
(1092) cabro says:

Peeking in to say hello and scan comments. I appreciate the kind words. I had b/w today and see the endo in a week. B/w included electrolytes. BP is controlled with med but HR jumps around on some days when I need more oxygen for activity. I suspect my T4 is too high. But I never really know for sure until the test results come back.

Karen and Bonnie, A wonderful and quick shortcut to enlarge the screen is to press and hold “Shift” and then press the key with the + sign above the = sign. To reverse, press and hold Shift and the – (minus) sign between the number 9 and the +/= sign. Fabulous!

Keeping all of you in my prayers. My best friend is having brain surgery for a very large tumor Thursday at dawn. Please keep her in your thoughts and prayers, according to your beliefs. Many thanks.

October 2, 2013 at 10:21 am
(1093) Bonnie says:

Dear Kat, Karen, Cabro and others who post here,

I also have a gmail account I resurrected recently to post here. It is: bonniebenner1@gmail.com. Please test it out so I know it’s working ok. Kat, thanks for your email too. I will send you something today to test it with mine.

I have more to share but I’ll send this first.

October 2, 2013 at 12:29 pm
(1094) Bonnie says:

This morning at 9am my bp was 120/74 p-71
At 11:15 am it was 120/69 p-73

Now please don’t judge what I’m about to share.
The compound is giving me problems which I’ve shared about a few times. Call me impulsive or a glutton for punishment but I decided to try the Sandoz I have here again. My dose is supposed to be half of a 125 mcg pill which is 62.5 mcg. I decided to take less then a quarter of the pill this morning to remind myself why I couldn’t tolerate it the 5 times I tried it before. It’s definatily strong!
It feels like the dose is right compared to Levoxyl on one hand but then it also feels very potent. Hard to relax after taking this and I was feeling really tired and lightheaded when I got up. It usually increases my pulse with a strange headache where I usually dry heave half way through the day so I’m aware. I haven’t had other symptoms yet except the strange headache is there. I have to go through the day to see what unfolds. I wouldn’t mind trying this at a lower dose to be sure if I can or can’t tolerate it. I have the compounded stuff to fall back on. I’ll let you know how this goes.

Karen- Since the compounds were so pricey I wouldn’t have another one made until I use one of the ones already made. All the medicines have their side effects.

We are now getting hospital bills from the doctor’s fees. Wasn’t expecting that since the deductible was met but apparently not so.

I currently have a tightness/numbness on the left side of my face now. Very strong this Sandoz. No tight muscles or rib pain with allergic red marks or tight pains or infected looking bowels. The compound never gave me headaches though (one good thing).

I will pray for your dear friend Cabro and for you as well with all the medicine changes and issues that come with all if that.

Thanks for checking in me dear Kat.

Always good to hear positive on Levoxyl coming back. I want that pill back more then anything!

October 2, 2013 at 12:57 pm
(1095) Bonnie says:

Thanks Karen for all your suggestions on everything from vitamins in foods for a low glycemic diet to all the other informative resources. Your nurturing is not overlooked.
I have put more sodium into my diet. I really believe the compound was knocking my bp much lower then normal. I have been eating pretty well (no caffiene and too jittery sometimes to even think of coffee etc.). I do have sugar drops, that I can feel coming on so I have to watch that and eat pieces of fruit, have a few spoonfuls if a frosty after dinner. The hypothyroidism is one thing and the medications can certainly create more issues.

Typing from my phone so please excuse typos, lol.

October 2, 2013 at 1:03 pm
(1096) kat says:

Dear Carbo…one of my best friends had breast cancer after beating bladder cancer and had to have both breasts remove and has been going through hell since May. I will definitely say prayers for your friend. My poor friend never was sick and now is on all the “great” chemicals. Glad you are feeling better. Karen Bonnie I will send you an e-mail to the g-mail address. Talk to you all tonight.

October 2, 2013 at 3:19 pm
(1097) Karen says:

Niacin supplements may interfere with thyroid med absorption!

http://www.livestrong.com/article/470816-niacin-thyroid-disease/

October 2, 2013 at 3:28 pm
(1098) Karen says:

DRINKING WATER at a certain time during the day maximizes its effectiveness on the body:

Drink two glasses of water after waking up – helps activate internal organs.
Drink one glass of water 30 minutes before a meal – helps digestion.
Drink one glass of water before taking a bath – helps lower blood pressure
Drink one glass of water before going to bed – helps to avoid stroke or heart attack.

My Cardiologist also told me that water at bed time will also help prevent night time leg cramps. Your leg muscles are seeking hydration when they cramp and wake you up with a Charlie Horse.
Natural Vit E is also good to prevent muscle cramps.

October 2, 2013 at 3:42 pm
(1099) Karen says:

For those who still have full or part thyroid function.

VITAMINS THAT STIMULATE THYROID GLAND:

http://www.livestrong.com/article/497382-vitamins-to-stimulate-the-thyroid/

Note: Most vitamins can interfere with thyroid supplement and should be taken 4 hours after or before taking thyroid med.

October 2, 2013 at 4:29 pm
(1100) Stacey says:

Hello Everyone,

I’ve been reading faithfully everyday and I’m so sorry to hear the struggles of each one of you. I can tell you, I to have been there…done that, with low B/P and with high B/P (for me) including a jumpy Heart Rate. I never had high B/P and while on Sandoz (low dose for me, my B/P went high.)

I’m really going to miss each one of your comments if you guys go into personal emails, I have been learning so much about my struggles while battling the loss of Levoxyl by all the great info each one of you guys have been posting about. Any and all information on here is helpful to each one of us in one way or the other.

I’m still on a lower dose of Tirosint and Cytomel, (been on this now 2 weeks) but have had the worst Burning stomach in my life, But trying to work through that with lots of water and some advil and thankfully it is getting better each day.

I no longer have night sweats/or night mares at all, in fact been sleeping great. (so that was definitely Sandoz caused) I don’t feel as good as I did on Levoxyl but Tirosint is better than any other option I have tried.

If you guys all go on the personal email chain, you will be missed. But I do understand, I still use my super old Blackberry Pearl as my phone and scrolling down through this forum is very tough.

I wish you guys Healthy days and hope Levoxyl does come back when they say it will for the sake of every one of us, as I’ve been Praying everyday for it!!

Stacey :)

October 2, 2013 at 4:36 pm
(1101) Imediject says:

Bonnie – a heads up on low b/p and hypothyroid. Those two go together when it comes to low sodium levels. Especially if you’re having trouble with your thyroid meds. If you have electrolytes done that includes your sodium level, and if it’s low the only solution is getting the thyroid levels up into a more normal level. Happy thyroid, happy sodium. Believe me, been there, done that. Also, and it’s a big thing to remember. There are different kinds of low sodium (hyponatremia). The one that comes from low thyroid is called “euvolemic hyponatremia’. It’s treatment is different than other kinds. One thing you do not want to do is flood your system with water, because what you’re doing is flushing what sodium you have right back out. Also, sports drinks are not the way to go because of their potassium levels. Serious hypothyroidism puts potassium / sodium levels out of balance, and while you can up your sodium levels a bit, you don’t want to add other things that will work against you. You can check out hypothyroidism and hyponatremia on both Wikipedia and there’s also a great article on medicinenet.com.

Also, for those having problems with inflamation. There’s a blood test that is a fantastic indication of how much of that is going on in the body. A lot of doctors overlook it these days, but having a “Sed Rate” done is well worth it. Autoimmune conditions and inflamation go hand in hand, but a sed rate shows you just how much.

Hope this helps. :-)

October 2, 2013 at 5:34 pm
(1102) Karen says:

Stacey:

The Forum will continue as it has -hopefully – it is just two of our posters who want to exchange e mails…for sharing some more personal stuff not pertenant to the posts …I would not give out my MAIN e mail but I have a g mail somewhere I might , but all of my info and communication will still go onto the Forum as I am sure all the others will do. Never fear, we’ll be here!

October 2, 2013 at 6:57 pm
(1103) Janet says:

Hi everyone

I have been taking Sandoz generic levo for about a month and a half now and it was great but …..

Now I am having some strange issues. The top number of my blood pressure has been high but not the bottom. I feel really hyper and when ever I cough (I had the flu) it tastes like SALT! No food tastes normal to me now…. and I have a weird salty taste in my mouth all the time.

I gave it time b/c I was sick but it’s still happening and I am well now. , I just don’t know …..

I am ready to cry because it was working so well with no issues. This salty taste, hyper feeling and the high BP top number is so weird.

Blood work friday. I stopped taking it today. I have no idea what to try now.

Anybody else have that salty taste?

October 2, 2013 at 7:05 pm
(1104) Karen says:

I can’t seem to get this question answered from my dotor’s office or from the Internet as well. How are the T3 uptake and Free T3 related, if at all? If one is normal, does that mean the other will also be normal?
Two times now I have requested FT4 and FT3 on labs and the FT3 was substituted with T3 uptake.

Anyone out there know? Thank you!

October 2, 2013 at 7:10 pm
(1105) Karen says:

Janet:

Sorry to hear that. I scoured the Forum and could find no similar comments regarding Sandoz. I did discover a concern on the Internet about the SSG, sodium starch glucolate, in the Sandoz.
The sodium has been causing high BP in some patients. Perhaps it takes a while to build up in the body.

October 2, 2013 at 8:43 pm
(1106) Bonnie says:

No worries Stacey. Nothing wrong with sharing email to stay in contact as a backup and I plan on continuing to post on this blog. I also learn from others experiences. I hate how we have to struggle in survival mode with these medications and like Cabro said in a post, if there were more choices. None of these meds are compatible with my body chemistry and I’m going day by day hanging in there praying I get through this Levoxyl comes back.
I have so much to live for with my grandchildren, family and of course my dear husband.

Imediject- when I was in the hospital 3 weeks ago my electrolights were normal but that could have changed. I will read up on the sodium issue you mentioned.
I had a sed rate done in the hospital and it was high at 41 (normal is up to 20). My primary wants to do a bunch if tests (labs) in 3 weeks.

Today my Bps were all over the place. My lowest was 101/66 and my highest was 126/77. My pulse remained in the 70′s. I was pumped taking a little of the Sandoz but today but it didn’t show in my vitals. I did continue to have extremely tight ribs and severe back and spine pain. It concerns me about all the pain and tightness around those areas. A few little hives came out around my rib cage. Feels like arthritis has set in there and when I’m taking these medicines it flares this up. I admit I cry when I get to feeling so badly. I develope a low grade fever in the afternoons when I’m really aching. I’ve read that over treating the thyroid can bring more osteoporosis (which could be why I’m hurting so much) and under treating the thyroid causes other health issues. I just want this madness to end. Bring my medicine back already!

All I can say is that I was fixed and feeling good and now
I’m not.

Six months of this experimenting and not accomplishing much is tough. Really tough. More later.

October 2, 2013 at 8:50 pm
(1107) Bonnie says:

I’m sorry to hear about Sandoz giving you problems Janet. Keep us updated with what happens next and good luck with your labs.

October 2, 2013 at 8:59 pm
(1108) Bonnie says:

For Karen- I’m eating a lot more lately just not sticking to my ribs (as the saying goes). Would love to weigh at least 100. Don’t want you to think I’m not eating. I’m starved on whichever med I’m on (and the dose). I guess the food isn’t metabolizing the way it was a few months ago.

October 2, 2013 at 10:17 pm
(1109) Bonnie says:

My reply to imediject- that would be electrolytes (not electrolights as spell check on the phone rolled out).

I hope you are still doing well. :)

October 2, 2013 at 10:53 pm
(1110) Karen says:

JANET:

There are options out there – please do not get discouraged. See post 515 for compounding pharmacies in your area. That is one option. I can give you info on various fillers for synthetic T4. I know many people doing well on compounded T4. I will also give you the Web Site to check out a compounding pharmacy to make sure they are accredited by their State.

There is also dessicated, many are doing very well on it.

Let us know what you are thinking…we have a lot of experience here.

October 2, 2013 at 11:09 pm
(1111) kat says:

Hi All… I am not leaving this blog. All of you saved my life with all the information that was provided. However, like Karen stated some of us went to personal e-mail address for more personal conversations. Janet…I never had Sandoz react the way you stated but I am still having a difficult time stabilizing. I am still “hyper” but my high blood pressure has become normal. Now, for two days cannot eat and have a very upset stomach. I cannot wait until Levoxyl is available. How are you doing…Imediject and Carbo.? Have your blood sugars been stable with the Sandoz(Imediject}? Mine have. I am very disgusted tonight but again grateful for all of you. Take care Karen. My prayers are for Pfizer to give us a X-mas gift…Levoxyl. That would be so wonderful.

October 3, 2013 at 5:33 am
(1112) Karen says:

Janet:

Here is a good Mayo Clinic Web Site on blood pressure. I had to refresh my own memory on what the numbers mean. I think of “SD” for San Diego to keep the systolic/diastolic numbers in order. Always get that mixed up.

http://www.mayoclinic.com/health/hypertension/ANO113

Hope this helps.

October 3, 2013 at 9:59 am
(1113) Karen says:

Par for the course – I know what I did wrong – I typed the letter “O” in lieu of number “0″ after AN . Try again…it’s worth it.

http://www.mayoclinic.com/health/hypertension/AN0113

Note that the systolic number goes up with hyperthyroid.

October 3, 2013 at 11:11 am
(1114) Karen says:
October 3, 2013 at 11:24 am
(1115) Imediject says:

Kat,

I’m still doing well on the Sandoz. :-) I’m at the point now where I can have blood work done, and I’m expecting a dramatic improvement over the last time when I’d just come off the Tirosint. I noticed an improvement on how I felt within just a couple days of starting the Sandoz, but the biggest change came between week 3 and 4. I was able to get back to my regular dose of Tenormin, and I think this was just the point where the Sandoz reached it’s stable level. That’s also where I noticed that my blood glucose levels were settling down. I’m expecting things to continue to improve over time, because my body really took a beating this past summer. I have a doctors appt. on Monday, and it’s going to be nice to talk about things that are going well instead of how miserable I feel!! :-)

October 3, 2013 at 8:03 pm
(1116) cabro says:

Karen, Re: T3 uptake. From what I have read in recent years, the T3 uptake test is not really considered useful anymore, but I really don’t know for sure. This site says it needs to be calculated with T4 to get something called “FTI.” Don’t know what that is, either. http://www.healthcheckusa.com/more-tests/tri-iodothyronine-t3-uptake-thyroid-blood-test.aspx Furthermore, it doesn’t say whether that is Total T4 or free T4.

October 3, 2013 at 8:09 pm
(1117) cabro says:

Karen, Re: sodium starch gluconate. I am more concerned about it potentially coming from Chinese sources than I am about blood pressure from a tiny filler taken daily. Too much T4, IMHO, would be my first suspect for high BP, especially since the Sandoz seems to be absorbed better.

October 3, 2013 at 8:10 pm
(1118) cabro says:

That is great news, Imediject!!

October 3, 2013 at 8:14 pm
(1119) cabro says:

Sending soft hugs to you, Bonnie. I’m so sorry you continue to suffer so without Levoxyl. :(

October 3, 2013 at 8:59 pm
(1120) kat says:

Hi everyone…Thank you so very much Imediject for relaying how long it took for the Sandoz to “kick” in . You understand because you are a diabetic. I am sometimes impatient and this is the second week of taking the Sanoz “levo”. Also, like Carbo I am still mixing the levoxyl with the Sandoz. Imediject., do you tolerate the entire strength of the Sandoz. ? Carbo, are you still mixing the levoxyl and Sandoz “levo”? I think I am going to go straight Sandoz next week and just try taking almost the entire pill. I kept a log on when I started the levoxyl many years ago and I did not take the entire pill for about a week {out of fear}. Back then I was a lot younger and not a diabetic with five bouts of cancer. I just hope by sharing with you all that I can finally get it (my goofy body) to acclaimate to the Sandoz. You are in my prayers and Carbo I put your friend on a prayer chain by a “prayer warrior”. He really worked through God and prayer energyto and my girl-friend with the bnreast cancer because they thought the cancer had gotten into her lungs and when they operated it had not. Sometimes I sound like Polyanna but I am very spiritual and believe the higher powers are going to give us a miracle. Thanks again.

October 3, 2013 at 9:22 pm
(1121) Karen says:

Cabro: Thanks for your info. In 1047 I posted a site where I found “adverse side effects from SSG”. It did include high BP.
It probably is from China, would not surprise me. Just like more than 90% of all our consumer goods…

Hmm, no luck in getting more info from DR on T3 uptake. I also read that the test just has no value any more. I had the test 25 years ago, thanks for posting that site on it. Not going to worry about it as I should get my new med tomorrow. Five days delivery from Wisc. I still am looking for a closer source in CA, if it works. I take one day at a time.

Actually with a point 6 FT4 and TSH of 7 of last Monday, I don’t notice the confusion I had with the 14.77 TSH. The doctor told me the excess T3 was taking some of the workload responsibility of the missing T4.

Hope you are feeling better and that your friend did well in surgery.

October 3, 2013 at 9:26 pm
(1122) Karen says:

IMediject:

Nice to hear your good news!

October 3, 2013 at 11:22 pm
(1123) Ed says:

Hello everyone,

I’ve been here reading everyone’s posts. I haven’t posted until now because I’ve been doing fairly well on Armour Thyroid. Still think Adrenals aren’t performing up to par. I see Endo end of Oct, hope to learn more then and post some solid information that may benefit others. Thanks for asking Karen. Nothing more to add to my belief that T4 therapy works well with some T3, except that I do agree with your post on drinking plenty of water. But that is me and we are all different. This forum proves that very well. I did have one bad day and missed work. Not sure if it was a bug or not drinking enough water. Drinking more water and feeling better.

I do give best wishes to everyone here with daily thought and prayers we all continue to be strong until we find the formula that agrees best for each one of us.

Lin, post 1078: I went very Hypo from no meds for awhile. Not very wise choice on my part. I would recommend you pay attention to how you feel and what signals your body may be sending. For me it was severe brain fog. Took awhile to recover from that and I still don’t think I’m 100% yet. NDT works well for many, I can say it is doing well for me so far. I think T4 was not converting to T3 in my case.

Bonnie and kat I may send you an email, I’m not on fb so if this site goes down I’d like to be in the loop with everyone.

October 4, 2013 at 11:11 am
(1124) Karen says:

Hi Ed:

That is terrific news. I wish I could have stayed with Erfa , but it was too much direct T3 for me. I am on the 60 grain dose until new med comes, and feeling well other than having a .6 FT4 and 7.+ TSH. I only have difficulty copying out Web Sites on this Forum!

I had a very rapid and irregular heartbeat on 90 grain. I had 5 by pass open heart surgery in 2004. I grew up in the midwest(Arlington Heights Illinois) when red meat, butter, cream cheese and eggs were considered a perfect diet. That was well before the days of lipid profile testing.

My dad died of a coronary occlusion in 1968. One blockage killed him. I had FIVE blockages and when I went down to emergency at Sharp Hospital SAN the nurse could not believe I WAS THE ONE THEY WERE WAITING FOR. Surgeon told me some of my blockages were old, but my body had made its own by passes . That is why exercise is paramount for good heart health.

IN 2 weeks I was home caring for myself and my two collies with the help of my fiance . He had just given me an engagement ring, he gave my two collies matching rings ( artificial diamonds). Those collies have passed, but I still have their rings and wonderful memories which will never die.

My parents were in Ireland at the time my dad died. He was sealed in a casket in Ireland, but, as I was with TWA at that time, we got him OUT of Ireland within 3 days -a miracle. My brother flew to Ireland to be with my mother and take her and my dad’s body home. TWA did everything…all at no cost, including transportation home and 2 nuns to stay with Mom until my brother arrived. Too bad TWA went under in the early 90′s. It was a great company.

Ed, there are no plans that I know of that this Forum will be shutting down. Kat and Bonnie just wanted to share e mails.

October 4, 2013 at 12:22 pm
(1125) Bonnie says:

Good morning Karen, Ed, Cabro, Kat, imediject and others who continue to share everything (good or bad) with your experiences).

It’s good to hear from you Ed and your good report with Armour. I’m glad posters are reading this blog and Karen is right about the shared email and I will continue to share
on this blog . Vital information here for all of us and we draw strength from each other. Please continue to update Ed.

I’m glad to here your good report about Sandoz imediject.

Kat, through this blog and email I’m feel comforted that when I’m feeling more needy with regards to medication and sharing with each other is such a blessing for me. I hope you can adjust to the Sandoz ok.

Thanks for the hugs Cabro and it’s always good to hear from you and your updates.

Karen, update on your compound and I hope your thyroid numbers continue to improve. I also enjoy the personal sharing as we’ve become as family on here.

I took nothing yesterday for feeling so lightheaded
and continued low bps. Today I took half of the Sandoz pill and so far I’m hanging in there. I don’t trust it till the day is through but I got my t4 in me. I will update.
This morning my bps were back to normal ranges so well see if this stays consistent. Everything is always worrisome during all these changes.

Here is a thought: Kat mentioned Levoxyl coming back for Christmas and since that is also my birthday, having Levoxyl back would mean everything to me. Just putting that out there…:)

October 4, 2013 at 12:32 pm
(1126) Bonnie says:

Please, always Excuse any typos, it comes from phone texting and since I do so much of it, my letters often times hang up as well. Sometime I’ll get my notebook (laptop) fixed.

October 4, 2013 at 9:04 pm
(1127) Ed says:

Good Evening everyone,
Karen, I kinda look at things that happen during the normal course of life as somewhat of a test. You have been tested extensively and have proven to be strong through it all. I think you are doing quite well considering what you have endured and the inert ingredient setbacks. I would say you have passed with flying colors and more! Thank you for being dedicated to this site and replying faithfully to those who post looking for answers. Myself included, you have steered me in a direction that has helped me more so than I can put into words. I must say yours and others shared experiences has played a part in saving my job and relationships. I was practically worthless for a peroid of time just barely functioning. I have recovered to a state where I can contribute and carry my load. Believe me, I’m called upon to make up for missed time, therefore my intermittent absence from time to time.
So Karen, Bonnie, cabro, kat, Imediject and all others here, you will always have a place in my heart for your sincere writings that have been a tremendous resource in searching for an alternate solution in this rediculous position we have become trapped in for now.
I plan to continue to check-in at this location and continue to update as usual. I was thinking contingency plan in the event this site crashed for some unknown reason since I don’t participate in facebook.
Bye for now

October 4, 2013 at 10:34 pm
(1128) Karen says:

Ed:

Thank you for you kind words. I believe as you do. I take each challenge as a hurdle to over come, as a test, as something to make me stronger, and I won’t ever let myself be defeated, or anyone else, with God’s help. I have had my difficult days, but I always know there will be a better tomorrow. There ALWAYS is.

There are a lot of people suffering on this Forum during this Levoxyl crisis and if I am capable of helping them meet their needs in any way, I am always available.

October 4, 2013 at 10:50 pm
(1129) Karen says:

Anne and Janet:

Any thoughts yet on what you might try next? Let me know if you need any info on alternatives. Anne I did not mean to scare you about dessicated, but I talked to my Cardiologist today and he agreed that with your past history of A-Fib, you should not go with dessicated. There is a great site showing up on the Forum front page tonight on A-Fib and the risk for strokes. It is rather scary to read, but great info. We all need to know this.

Have a nice weekend .

October 5, 2013 at 12:45 am
(1130) cabro says:

Quick update. I’m on a lower dose and a different BP med. My electrolytes are back to normal, and my T4 is down from 1.93 to 1.56! My TSH is still low, .0156 – likely from the Cytomel. The good news is that on 2 out of 3 days I am taking half Sandoz and half leftover Levoxyl. The third day is Levoxyl. Still have some symptoms like occasional hot flashes, but I’m encouraged.

October 5, 2013 at 10:49 am
(1131) Karen says:

Cabro:

Good to know your numbers are improving!

October 6, 2013 at 10:01 am
(1132) Karen says:

A Good Sunday Morning to All:

Janet:

You mentioned you stopped the Sandoz on Oct 2, have your issues resolved? Hope so. Please keep us posted. I asked my pharmacist about your salt taste issues and he is to respond this week after he completes his research.

Cabro: I hope you continue to improve.

Anne: Waiting for your update…

Carol in NY : Have not heard from you in a while.

Bonnie: You are always in my thoughts…

My new compounded came on Friday. The capsule is Veggie. No side effects so far from filler . I DO feel an improvement in hypo feelings.

The most notable improvement is that my irregular and rapid heart rate has almost gone away after only 3 doses. I have read that both too much thyroid and too little thyroid are causes of A Fib . No proof that was my situation. Good proof that I had too much T3.

San Diego County is on a RED FLAG fire alert until 6P tonight. The LA area yesterday had 80 mph Santa Ana winds, ours were not that bad. I don’t need this right now! I got the emergency supplies in car, gassed up and cashed up as required. If we do have an emergency I know I will get through it. Here comes another “test” Ed!

October 6, 2013 at 9:12 pm
(1133) Anne says:

Hi all:

Karen: Unfortunately my script for Westhyroid P fell thru the cracks, still waiting…ouch. But…..after I received the negative blood test, I started wondering if my recent new slight case of Afib and shortness of breath was being caused by Sandoz, not my past history (that I had assumed) My doc lowered my Sandoz and now I am rid of my Afib and shortness of breath.

According to my research, it appears that an over dosage of either Levothyroxine meds or natual pigs thyroid can cause Afib. Being that I do not have a thyroid at all, I want to try Westhyroid P, the whole natrual T4, T3 package….watching carefullly. Thanks Karen, for making me aware.

October 6, 2013 at 9:30 pm
(1134) kat says:

Dear Karen…. Sorry to hear about the negative weather alert I will say special prayers for you and your family. I was having a serious talk with the “higher” powers tonight and asked that the CEO’s at Pfizer wear some different “walking-shoes” and give the rest of us a breather. Carbo… I a m so happy your numbers are improving. The weather here is eerie…almost 81 degrees. Had to turn the Air on which is very unusual for this time of the year in PA> Take care and God Bless you all.

October 7, 2013 at 12:24 am
(1135) cabro says:

A quick check-in. My T4 has improved, so it’s likely that I am not absorbing the Sandoz excessively. I was worried about that. I’ve been on a diet since Aug. 23 and think that may have affected my absorption, since both T4 and T3 spiked on 9/13. Regardless, I’m better but we need to get my T4 lower and my TSH a good bit higher. I am clearly converting a lot of T4 into Reverse T3. Not sure what the endo will say Tuesday. For the first time in almost 3 years, I am going in with almost no questions and only one article that is currently misplaced. LOL I have lost at least 11 pounds. I was starving all the time before the diet and figured if I was going to be starving, I might as well eat less and weigh less while I was starving! It’s been hard and I have 9 to go to get back where I was before TT and RAI.

So glad to hear good news from you, Ed! And Karen, I hope the Red Flag Warning is over and that your med arrives. Anne, too much T4 can definitely cause palpitations. I managed to survive them for many months when I was suppressed for thyroid cancer management. I’m glad your doctor has lowered your dose successfully.

OMG, Bonnie, wouldn’t Levoxyl returning be the best Christmas present ever?! I heard they will make an announcement sometime in January with an update. Most large companies are very low profile in December, just letting the rest of the year close out. I’m praying.

My friend did well with surgery Thurs. but has developed left side paralysis from the brain swelling. Please keep her in your prayers, if you are so inclined and thank you.

Karen, small world. I was with TWA in 1970. It was a short stint but I loved it. I come from a family with a pioneer aviator, several pilots and airline employees. I’m so sorry your dad passed away overseas but am pleased that TWA was so supportive.

October 7, 2013 at 10:47 am
(1136) Karen says:

Cabro:

I worked for TWA for a year and a half in downtown Chicago in Reservations 3:15P to midnight while going to college in the day part time, then left the Chi area in 1973 for Southern CA where I have lived since then .

Sounds like you are doing so much better, and I will continue to pray for your friend and you too. Is your friend coherent? If so you can give her this poem from me to follow by Helen Steiner Rice. I believe the God here is universal as is the faith.

Anne:

Yes, A fib can happen with too much thyroid hormone or too little hormone. You have researched well, you have the knowledge, you have experienced A fib, you have a doctor that I am assured will monitor you very carefully. He/she should dose you slowly starting low in the beginning and increasing the grains minimally over no less than 3 months for optimal safety. I still have my thyroid, but no function at all due to Hashimoto’s. I believe my disadvantage was that I had a TSH of 14.77 when I started Erfa. You are also using Westhroid which has a higher ratio T4 to T3 than Erfa. The 60 grain Erfa lowered the TSH to about 7 then could not reduce it any further. I am probably older than you are(no need to mention your age) AND I have had heart surgery. So I will be less concerned about your starting the dessicated knowing you are determined to try it( I was also) , but the Mom Karen in me will be anxiously looking for your updates.

October 7, 2013 at 11:35 am
(1137) Karen says:

Cabro:

For your friend:

I said a special prayer for you
I asked the Lord above
To keep you safely in His care
and enfold you in His love.
I did not ask for fortune,
for riches or for fame,
I only asked for blessings in
the Holy Savier’s name.
Blessings to surround you in
times of trial and stress,
and inner joy to fill your heart
with peace and happiness.

HS Rice

This is a universal Lord and Savior …

October 7, 2013 at 12:22 pm
(1138) Karen says:

Cabro:

The only info I got on T3 uptake was a definition: T3 uptake is a measurement of amount of available binding sites for Free T3 on thyroxin binding proteins. I don’t see how T3 uptake could be an indicator of what the Free T3 level is. It does not say whether or not those binding sites are filled.

October 7, 2013 at 2:41 pm
(1139) Karen says:

For those of you interested in compounded levothyroxine(T4) be sure to specify that you want Levothyroxine Sodium USP and NOT Sodium Levothyroxine Pentahydrate which is made by Tianjin from CHINA.

Although I asked for the levothyroxine sodium on my new compounded, they sent the T4 from China. Medicine is going back. They also included 5.25 grams of Microcrystalline cellulose and .03 grams Riboflavin USP(B2) which was NOT on the script.
Levoxyl had only .18 mg Micro cel and I tolerated that.

Last night I started having severe vestibular symptoms and when I looked at the paperwork for the new compounded (I did not have time to read on Friday because guests had arrived for the weekend), I learned that micro cell was in my compounded.. All the issues were discussed previously with pharmacist. My script read Levothyroxine Sodium USP with organic brown rice filler. Wow that was the fastast trial in 5 months, less than the 5 days I had with Synthroid. I hope my experience will benefit others.

I love this old midwestern phrase, “Doesn’t that FROST ya?”.

October 7, 2013 at 2:47 pm
(1140) Bonnie says:

I don’t know where to begin. I’ll start with today. I did not take Sandoz today. Along with this experimenting, I pulled out the Levoxyl I bought up north (back in August) and tried that again (for the 3′rd time). I’m tring to wrap my head around the fact it is the same pill as the ones I was taking before the recall, but these are different. I’m experiencing the same reactions as I did the first time I took one of these. They are much stronger then the batches I received from Publix pharmacy. I remember how I felt on the Levoxyl I was on the past few years and I remember how I felt traveling north in August, using up my last two pills (felt good), then I started these Levoxyl the next day and noticed the anti inflammatory effect with my muscles, around my ribs, and back. Very stiff with walking like lead in my legs. I only have a two month supply and was going to hold off taking them (no matter how they made me feel and try hard to tolerate them) until Levoxyl is back on the market. Of course if I keep taking these in two months I have to switch to something else.

Yes Cabro, I want Levoxyl back before Christmas even. Our December calendar is full and our little granddaughters are excited for us to visit over Christmas this year. Oh how I long to feel well. Six months of this situation is way too long, it has just got to end. I need strength and that feeling of wellness as before to fly on a plane, travel, keep my resistance up and have energy to play with my precious granddaughters. Please God, make it happen.

Well, like the other medications, the Sandoz is rough in tolerating some side effects. I made a bunch of notes for my primary as I was planning to make an appt this week to discuss the compounds and Sandoz reactions, discuss early lab work. I don’t want to go anywhere I’m so sick of dr visits over medications as they don’t know how to help me either with this thyroid med issue.

October 7, 2013 at 3:09 pm
(1141) Karen says:

Cabro:

The reason I mentioned the definition of T3 Uptake is that my doctor did an Uptake in lieu of a FT3 lab which I had requested. My uptake was normal, but I don’t think the uptake can give one the T3 level – I never got that information – so far no one seems to know that answer includng my doctors. What do think of my thinking/comment on post 1136?

I will be back on Erfa now until I can see the specialist again. It is just par for the course. I am not at all upset or even disappointed. I have other things to think about. I just did a very long walk and it cleared my brain.

We did have two fires in SAN over the weekend, but they were quickly handled. The Santa Ana is over for now. Enough bad weather in other parts of the country…

October 7, 2013 at 3:29 pm
(1142) Bonnie says:

Continued…

I took the Sandoz for 4 days and along with some hyper ness, I was experiencing that salty taste every time I coughed up phlegm as well as burning down my throat. I was taking half of the pill and that feeling of my ribcage
tightening around to my back with tight muscles seems to be a thing with these drugs in my body. I don’t know why I bother to weigh myself anymore. When I eat, my ribs tighten up more and honestly, my bowels are really effected by the anti inflammatory/inflammatory process. I feel like my digestive track becomes backed up where its hard for my bowels to move freely (too much info I guess, but it’s a concern). Yesterday when I took nothing I had no rib pain/tightness at all. My bowels moved great relieving a lot of discomfort. Being hypothroid doesnt mean that everyone follows the constipated rule. I generally don’t have problems. As for my wt., I may never put back on a single lb until Levoxyl comes back or some other medicine somewhere relaxes my ribcage muscles and my girth can expand. Sounds goofy maybe but this is what I’m thinking. These problems where tightness and discomfort are concerned just shouldn’t be happening.

I’ll continue next reply..

October 7, 2013 at 4:28 pm
(1143) Bonnie says:

Then there is the BP issue. I’ve been watching my vitals because the low bps are a sure sign of feeling hypo. I wasn’t paying attention until I started feeling dizzy and lightheaded too often. A few months ago when this all started (with the recall), and I would be off thyroid meds for a day or so my bps ran on the higher side like 140/90 and my pulse would rise if I was taking meds that I couldn’t tolerate. Now that is not the case. My bps have been low even on Sandoz. A few months ago when I tried that med. my pulse was in the 90′s. Since I felt do lightheaded on and off the compounds I started checking my bps. more often. Not to be parinoid but it’s become a concern (so many concerns with not being on thyroid on a daily basis). I read that 90/60 and lower is too low. Mine have been running 100/62 with 68 pulse. It fluctuates but now it’s a problem. Today they have been normal so far. My last reading was 117/73 p 78. I was feeling so weak and not able to go to the store for thinking I might faint. Then when I take these medicines it’s hard to shop for the tight muscles and all. For right now at this moment I feel ok. This was long, but I needed to share knowing that you all care. <3 We all want the same thing in wanting to feel well and whole again with our bodies.

I read your replies Karen. The compounds were hard for me because I was allergic to the Levo for one thing. I really wanted that to work. I agree with you that not mall levothyroxines are the same. I wouldn’t know about which brand to avoid though. It’s all getting so complicated anymore. I’m going day to day and it’s sad because if I remain on this Levoxyl I will run out and then it becomes a problem. I’m a little afraid of this Sandoz having side effects. God help us who are struggling.

October 7, 2013 at 4:31 pm
(1144) Bonnie says:

Good to hear your report Cabro, cont prayers for your friend. Good luck with erfa again Karen. Are you going back to the compound once they get it right?

Everyone keep updating. I care very much what you have to say in your updates. HUGS all around.

October 7, 2013 at 6:12 pm
(1145) Lin says:

I am now 23 days off of the levothroxine. I had blood work done on Saturday. My free t3 and t4 is in the normal range but my TSH is 7.0. When I was on levoxyl it was 1.02. I may try the compounding pharmacy now. If my free t3 is normal would it be too high if I tried armour?

October 7, 2013 at 7:41 pm
(1146) Karen says:

Bonnie:

No I am not going back to that compounding pharmacy . They are only getting the Sodium levothyroxine pentahydrate which is the one I do NOT want. I have tried four compounding now, they have all failed. Putting 5 grams of microcrystalline cellulose into my prescription was a major mistake. It was not written into the script. I can work with the lower dose Erfa for a while. No problem. I had no side effects from the fillers(cornstarch, mag stearate, sugar and talc) on Erfa at any rate. I was able to get an apt with the endo specialist this week. Maybe some “tweaking” will help! This will all work out for the best.

Lin:

That is a good question for Cabro.. I am not a T3 expert.

October 7, 2013 at 8:44 pm
(1147) Imediject says:

Looks like Sandoz is doing it’s thing for me. Got my blood test results back today, and I was pleasantly surprised! My TSH went from 15 a month ago, down to 4.6. I can’t compare the T3 results because last month in the ER they did a FT3 and this time they did a T3 total, but it was in mid range. And the FT4 went from 1.3 last month, to 1.5 this month. That’s actually slightly over the reference range – a first for me – so I think the doctor might try me on a slightlly lower dose until everything settles down. I think the TSH will fall into place in another couple months as it always lags behind what’s actually going on. All of my blood work looks much better than it did in the ER, and my sodium is back up to the almost normal range which is quite normal for me. The higher FT4 might be the reason for all of the headaches I’ve had this past week or so. But it could also be the fact that Knoxville TN is the #1 town in the entire country for the worst allergies. ‘Allegra Central’, and it certainly tis the season for sneezing around here. BTW, someone was saying they lived in PA? I lived in western PA all my life until we retired and moved to TN two years ago to get away from the snow. PA is gorgeous in the fall, but then living close to the Smoky Mt. National Park makes for magnificent leaf peeping as well. :-)

October 7, 2013 at 9:09 pm
(1148) Karen says:

IMediject:

The reference range for normal on my lab report for FT4 was .8 to 1.8. Yours must be different. With an I. D. of “IMediject” you must have a medical background.

I had another FT4 today that was .8. Last week it was .6. I have eliminated niacin from my diet -I had been taking it 4 hours away from thyroid, but the specialist told me to take it completely out of my regimen.

Sounds like you are fine tuning everything very well. Good work!

October 8, 2013 at 12:02 pm
(1149) Imediject says:

Karen and All,

It drives you nuts, but labs have different reference ranges – especially independent labs. I try to have all of mine done at the same place, and for FT4 they have a range of 0.70 to 1.48. I was just very slightly over the top, but with heart problems I don’t want to push things too much right off the bat. Been there done that with the heart attack / stent thing, and I hope to never go that route again.

Yes, I do have a medical background, although that’s not where the “Imediject” comes from. Started out as a surgical nurse and then went in to teaching as a Nurse Educator. The name comes from the “MediJector”. It’s a jet syringe (no needles) that I’ve been using for my insulin since they first came on to the market in 1980. I use Basal Insulin twice a day to take care of what needs the body itself has, and then do Carb Coverage with fast acting insulin every time I eat. Kind of imitating what a working pancreas actually does. But that adds up to a number of injections a day, and no needles is much preferable to me rather than being a human pin cushion. :-)

October 8, 2013 at 1:20 pm
(1150) Karen says:

IMediject:

Yes it is frustrating – most labs too have not updated their TSH ranges to .3 to 3.0.

Good to know you don’t have to be a “pin cushion”. That is great to hear about the jet syringe. I never heard of that because I am not a diabetic. We appreciate all your comments!

October 8, 2013 at 2:00 pm
(1151) Stacey says:

Good Morning to Everyone this Morning.

I would love to vent but I’m going to just keep my cool and move on. In a previous post I spoke that I was going to have a trusted Dr. (OB-GYN) do all my labs for me so I could at least gauge where I was sitting while on Tirosint / Cytomel. He and I spoke about the Levoxyl recall etc and has known me since 08.

Ok, well finally received labs and I read through everything and he didn’t request the FREE T3 or my Reverse T3 like we discussed at the time of my appt.
He’s a smart Dr. in fact one of the smartest I have met out here. But during his apt he did mentioned he didn’t want to draw attention by ordering unusual lab work. (I personally believe he may have gotten himself in trouble with the State in some way) just a feeling I got from him.
So Anyway in looking at what he did draw, my TSH is low at 0.017 with the old standard of lab scale of 0.450 to 4.500 and my T4, Free is 1.42 with scale of 0.82 to 1.77. But again NO T3 drawn at all

Cont’d…..

October 8, 2013 at 2:02 pm
(1152) Stacey says:

Cont’d…..

On that note, I know I need to bring the TSH up, but I really still to know my free T3 and RT3 levels are so I have an idea on how to adjust. So frustrating and on top of that, I was so hoping the Tirosint/Cytomel side effects would subside. Sadly they haven’t after a month of trying that combo.

So today I am back to splitting my Sandoz / taking my Cytomel and hoping the night sweats/ and night mares don’t come on too strong for me.

I have a journal of everyday and how I feel through out the day, the Migraines, Bloated stomach, painful bowels, swollen throat, and itching hives all on Tirosint and Cytomel I just can’t take anymore. I know I can use Cytomel without side effects, been using that since 2002, but all these T4′s are driving me crazy. Literally I have no brain when talking to my husband, that’s not like me. I have a memory like an elephant and I never get stuck searching for words. Man while on Tirosint the longer I was on it, the worse it was getting for me.

So I have an appt with my Rheumy on the 10th, At least she’ll draw whatever labs I request, I guess I’m back starting over again. I really do miss Levoxyl, never had an issue ever. I’m scheduled to travel at the end of the month but I’m scared to order my tickets, I have no idea how I’ll do without Levoxyl, now I feel I’m going to be constantly worrying about all the issues that Sandoz brought to me.

Take care Everyone, again it’s so comforting to read that others are still struggling like myself. Actually it’s very sad, none of us deserve this train wreck but at least we don’t feel alone. Thanks for being on this board and supporting ach other, I would be completely lost without each one of you posting your daily struggles and accomplishments.

Stacey :)

October 8, 2013 at 2:08 pm
(1153) Carol says:

Karen: I’m doing okay. Thank you for asking. I was so looking forward to hearing that you had a good experience with the newest compounding. Learned so much from your experience. I was going to try the Wm’s International compounded T4 at some point but for now I’m doing okay on the Sandoz. (Labs at the end of this month.) Target would not refill the Sandoz (only Mylan) so I went to a small independent, family-owned pharmacy. Much better experience (pharmacist was supportive of my choice) and it was $10 for 90 (50 mcg).

The worst side effect is the bad dreams. Nightmares. Lots of stress here so I assumed it was from that but now I can see where it would be from the Sandoz.

Hope things are better in San Diego and you are safe. NY has made it through without any major storms so far. We’ve still a few more months to go.

October 8, 2013 at 3:19 pm
(1154) Laura says:

I have been reading all the side effects everyone has had on the various brands and wanted to add my experiences. I was on the Lannett generic for 2 months and while my thyroid labs were in my normal range my body was definitely NOT normal. I had severe fatigue, and mental fogginess and confusion which are definitely not me. I had weight gain, digestive problems and heartburn which I never get. I could barely function and thought I was hypo but the labs showed it must have been inactive ingredients causing the symptoms. My doctor had put me at the the same dosage as levoxyl – 125 mcg – and thought maybe the dosage was too high. He had me stop the Lannett for several days and the fog lifted within 48 hours and my energy level bounced back too.

He switched me to Synthroid but at 100mcg dosage 3 weeks ago. So far I feel OK, although I am becoming more tired than usual and starting to experience some digestive issues and heartburn again. I had a short period of mental fogginess a couple of days ago too so maybe I’m falling down the rabbit hole again.?

My biggest problem is that my doc is a GP in Houston and my husband and I are in the midst of a move to north Dallas. I’m not near my familiar doctor and really don’t have the energy to start all over with someone new. I will be back in Houston in 3 weeks so I plan to get blood drawn for thyroid labs.

Thanks for letting me vent.

October 8, 2013 at 3:53 pm
(1155) Karen says:

Stacey:

Please never hold back your ventilating, that is part of the reason we are here listening! I do it all the time.

The symptoms you mention are those I have heard often from people taking Tirosint. Good to get off of it. There is something in the gelatin capsul that when combined with sodium forms an agent that causes the stomach/lowerGI issues. I will try to find the post on that.

Also, were you aware that Tirosint was more potent than other T4′s? Many people, including myself, had to lower the dose they took on Levoxyl when they switched to Tirosint. Many, but not all, have posted the same issue with Sandoz. The sodium content in SSG, 4th inactive ingredient in Sandoz, is very high. Be watchful for higher BP as well when back on Sandoz.

The up to date standard norms for TSH are now .3 to 3.0. Many labs have not updated that. Anyone taking Cytomel should have FT3 and RT3 tested. Good you have a back up doctor who will do it.

Many posters here have mentioned nightmares while on Sandoz. Some meds, including Sandoz, that cross over into the brain, will cause nightmares. I had terrible nightmares on it. Some suggestions: Good NOT to take med before you go to bed. Force yourself to awake if something bad happens in a dream. Journal all your dreams and/or discuss them with someone. Eat something an hour after taking Sandoz., and when I added a low glycemic diet , that helped me a lot. Caffeine has a factor in nightmares, too. I try to avoid it.

More later…

October 9, 2013 at 9:56 am
(1156) Karen says:

Laura:

Sorry to hear you too are having issues. A few years ago I was switched to Lannett and the T4 in it did not work in me. Many posters here could not tolerate Synthroid, including myself. But different folks different strokes. Well worth it to give it a try.

You might check out the inactive ingredients in each med if you have not done so already. They are listed in post 554/5/6. I will list Lannett inactive ingredients in next post. Mary Shomon also has a site regarding Synthroid- lactose and acacia side effects- I will give you the post number on that. Please keep us posted on how you are doing.

Carol:

The compound pharmacy can do the script without the microcrystalline cell, but I want to think about it first. The T4 they use is the pentahydrate which is from CHINA. It was clearly marked on the insurance Claim form.
I am researching now the manufacturers used by the various T4 meds and when complete I will