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Mary Shomon

What's Happening to Thyroid Patients Taking Eltroxin Brand Levothyroxine in New Zealand?

By June 11, 2008

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June 7 -- Folks in New Zealand are up in arms, because a reformulation of the drug Eltroxin (a brand name of levothyroxine manufactured by GlaxoSmithKline) appears to be causing problems in thyroid patients. Patients taking Eltroxin (which is government funded in New Zealand) are reporting all sorts of side effects and symptoms since the drug was recently reformulated.

According to a company spokesperson, the reformulation was necessary due to changes in the manufacturing operation, moving the production of the Eltroxin from Canada to Germany. While GlaxoSmithKline is saying that levothyroxine in Eltroxin is the same, there are new filler and binders in the reformulated product.

The Southland Times has more information.

Are you in New Zealand and taking the new Eltroxin? Share your stories here in the comments section.

UPDATE: June 11 -- The Southland Times has more on the Eltroxin story, reporting that after the initial reports of problems have hit the media, now the woman "who sounded alarm bells over changes to the Government-funded thyroid drug Eltroxin, has been overwhelmed by calls from people throughout the country who have also suffered side-effects."

UPDATE: August 30 -- Alternative to Thyroid Drug Eltroxin Is Sold Out in New Zealand

Photo: clipart.com

Comments
June 7, 2008 at 11:00 pm
(1) Justine says:

Is it just New zealand??? I take eltroxin and am having some serious eye problems that the hospitals cannot currently explain, they feel it maybe Thyroid related. I changed to 100mg 4 weeks ago and the box looks to be similar to the photo shown and is made in Germany.

May 13, 2011 at 10:44 am
(2) cnnie kelly says:

im on 200mg and the the eltroxin here has changed from thyroxine sodium to levothyoxine,my doctor saidit is still the same but im having joint pains.chills,sore head.swetting.its like i was before i started on the eltroxin.can not get any info in Ireland about the change in it.any help would be greatful.
connie.

June 9, 2008 at 10:08 am
(3) Mary says:

This is GlaxoSmithKline’s Eltroxin that is shipping all over the country. New Zealand is where there are complaints in the media, but that doesn’t mean that the reformulated Eltroxin may not be causing you problem in Germany.

June 9, 2008 at 8:52 pm
(4) Joy Mercer says:

I have been suffering extremely terrifiying symptoms since starting this new formulation in October 2007. Blurred vision, back pain (tail bone, body aches, urinary pain, headaches/migraines to name but a few. This is very very serious and needs to be addressed urgently. This has opened a can of worms. We need this fixed now.

June 13, 2008 at 3:26 am
(5) Sam says:

The new eltroxin is much weaker and wears off very quickly

June 13, 2008 at 3:34 am
(6) Patricia Miller says:

Has anyone in Austrlia taking Oroxine or Eutroxsig (both are trade names for Thyroxine) Had problems. I swear I had a batch early this year that caused problems ie excessive weight gain, fatigue etc. I started a new batch about 8-9 weeks now in the past 6 weeks I have had headaches/migraines on adaily basis!! Be intersted to here what people have to say?

June 13, 2008 at 3:48 am
(7) Penny says:

Yes i am in Australia and on thyroxine and started having itchy skin also getting very tiered and i thought there is something wrong with the thyroxine i touched one and it just crumbled as to my thought if they can crumble like that the potency isnt up to standards as i have been on thyroxine over 10 years and not happy with this

June 13, 2008 at 4:09 am
(8) Jo Brown says:

I live in England. I can relate to all your problems. I have been trying to take thyroxine for 8 years. I was started on Eltroxin (From Goldshield at the time)but quickly came off of this. Have tried most brands, but have problems with them all. Most recently I am trying Nature-throid, (recommened by Thyroid UK) it’s hypoallergenic. I seem to be better on this just trying to adjust the dosage. This can be obtained on the internet without prescription. It is a form of Armour.

April 2, 2011 at 8:21 am
(9) Valerie says:

Hi Jo,

Im in Ireland. Im taking Eltroxin for 10 years and i still have my hypo symptoms and all Doctor says is my blood is perfect.

Ive never been offered any other meds. Whats available in UK, i really want to try something else, ive fat pouches all over and eat really healthy .. im sick of it and it’s never a serious complaint yet a lot of people suffer with it.

June 19, 2011 at 1:07 pm
(10) Urs Brandle says:

I would like to try this Nature-throid. Where can I order it from? I have tried everything else. Other hormones cause an irregular heart beat.

June 13, 2008 at 4:42 am
(11) h15t0r1an says:

doesn’t this just prove that generic prescriptions for thyroxine, such as you will be forced to take usually by your doctor if under the British National Health Service, are a bad thing? I take my prescription for thyroxine every three months and go to my regular pharmacist who agrees to fill it using the brand of thyroxine I find works best for me. If he doesn;t have it, I will not have over the prescription until either my brand is delivered or I find another pharmacist who has my brand in stock. Out of 16 years on thyroxine, my life imprved vastly 12 years ago when I started doing this. I have found forley generics thyroxine to be OK for about 3 years. before that I had Norton and Goldshield but I knew before being told that their formulations had changed as they caused irritations and stopped working as well. so I tried forley generics and now ask for it all the time. don’t accept these problems and don’t waste your time if there is any way you can switch to another generic.

June 13, 2008 at 5:04 am
(12) Janet says:

Since being changed over to this new formulation in New Zealand, I have experienced a very itchy dry skin,eye problems, joint pains and other insidious re-actions, only since my husband found out about the changes did we realise what was causing the dis-comforts, so what do we do about it? how do we go about getting decent medication for a complaint that is so prevalent? Is this the drug companies boosting their profits yet again by selling us down the river????????????

June 13, 2008 at 5:33 am
(13) Maria says:

I am in NZ and have been on Eltroxin for over 10 years. Several months ago i asked my doctor to change the medication and Brand as my health seemed to be turnibg to custard.
Extreme fatigue, depression, itchy body, sore joints etc et etc. It not only didn’t seem to be working, but in my opinion, seemed to be making things worse. To my horror, Lab tests suggested I needed to decrease my dosage. !!!
EVAN ALMIGHTY!!! Doctors opinion, could be menopause…age…stress blah blah blah. Interesting that menopause, age etc all kicked in at the same time. Good luck everyone.

June 13, 2008 at 7:55 am
(14) Daina says:

I was in Southern African and re-filled my levothyroxine; I was given Eltroxin and boy did I suffer, heart palpitation, body aches, blurred vision, kidney spasm. One day i just said let me stop…………I had no idea this was due to the drug……..good luck to all those who have also suffered…

June 13, 2008 at 11:28 am
(15) Sandra says:

I live in Trinidad and Tobago , and I have been taking Eltroxin 100mcg since 2001.
I have developed severe back pains in the last 2 weeks.
Eltroxin is only available in 100mcg here and so some people have to cut the tablets.

June 13, 2008 at 11:51 am
(16) Barbara says:

Blurred vision, itchy eyes, depression and seeming lack of potency since 2007 on Eltroxin. Also some heart arhtyhms since I had to up the dosage. any suggestion what else to take in Canada??

June 13, 2008 at 2:34 pm
(17) Elnari says:

Was on Eltroxin for 5 years in South Africa, puffy and scratchy eyes, not only that but I’m 35 and had no interest in sex and totally un-emotional. Changed to Diotroxin, and my word changed in about three weeks, eyes were getting better and now I am the one wanting more ;-)
I am now on it for a year, and I can recommend it to anyone. I will never touch Eltroxin again.

August 22, 2011 at 6:40 am
(18) Libby says:

Hi Elnari, I am in South Africa too and have been on Eltroxin for over ten years. I am now 37 and have pretty much the same symptoms as you. I have even been to my doctor to complain especially about the ridiculous weight gain. Thanks for posting about the Diotroxin. I am going to go to another dr and insist on that now. I have absolutely had it with Eltroxin.

November 17, 2011 at 1:56 pm
(19) Joey says:

Hi I’m also from South Africa and was also on Eltroxin but soon found out that it was a heap of crap. I also was fatigue no sex drive, body aches and problems with my eyes. I changed to Diotroxin and HALELUJA!!! what a change. Thank goodness I made the change is all I can say!

June 13, 2008 at 7:36 pm
(20) Rosie says:

Since coming over to NZ in 2005 I have had constant problems with my weight, despite going to the gym 3 times a week and a regulated diet I have put on 7kgs, aching joints and vision impairment – optical migraines. After seeing this article I checked my bottle of pills and it’s Eltroxin. I have printed this article out and will be seeing my doctor as soon as I can – enough is enough. I don’t even have a thyroid it was removed 20 years ago, but sometimes I have elevated levels and they want to reduce it – ???? I now want some answers.

June 13, 2008 at 10:15 pm
(21) daleaway says:

I’m in New Zealand and I’ve been on Eltroxin for ten years following thyroid cancer. A week after changing to the new formulation last year I came out in a strong and itchy rash that my GP had to check for German measles, because that is what it looked like. Although the rash has gone away, I realise now that my itchy eyes, fatigue, and general run down condition that have arrived in the last few months are all probably due to the Eltroxin as well. I have found by coincidence one other person in this country with exactly the same symptoms.Have also had rosacea arrive on my cheeks, that has not been there before – anyone else had this?

June 14, 2008 at 12:37 am
(22) Ms. Piper says:

I sympathize greatly with everyone
who has been hurt by the changes
in Eltroxin. I’m in the United States
and was hit terribly hard when they
changed our Synthroid long ago…just
like with your drug, they claimed it
was only the inactive ingredients that
were changed, not the active. But oh,
what a bad time that can give some of
us! I still haven’t found anything
that helps me like Old Synthroid did.
But at least you folks have learned
your Eltroxin was changed, early on.
It was over THREE YEARS before I found
out about Synthroid being changed….
and even then, they just kind of fluffed it off as not being very
important changes. I found out about it
kind of by accident….I don’t think
most of the U.S. thyroid patients EVER
really found out what went on with
Synthroid. So, even though it’s not
much comfort, at least some of you
are finding out what’s going on rather
quickly….and I hope anyone who got
sick from this gets well soon, and that
the problem is addressed and taken care
of by the drug co. and your government.
This never happened over here, and it
still really gets me furious–because
it STILL affects me and my family to
this day.

June 14, 2008 at 11:11 am
(23) Patricia Miller says:

Hi I commeted a couple days ago… so what are we suppose to do? ure I am going to save this article and comments and show my GP.. he will probably make some comment but there will be no resolution.
I take 250mcg daily- with these headache/migraines daily should I be reducing my dose or what? Blood test never tell much of a story with me, the GOalways goes on how I fel… My TSH is always around .01-.03 I have to keep my T4 in the higher range of normal. I have anti-bodies, otherwise I develop fatigue, weight-gain etc very quickly. With opening the new batch I don’t know, maybe I should be decreasing my dose? Any thoughts, please

June 14, 2008 at 12:18 pm
(24) Sharon says:

Like Maria #10, but I’m in Canada. Seven years ago, I had antibodies and high tsh and went on Eltroxin 100 mcg daily. In two years I lost 40 pounds. Antibodies went down to zero. Felt fabulous. Last year all of my old thyroid symptoms came back: insomnia, skin rashes, joint pains, aches, fatigue, weight gain, etc. My tsh went up. Doctor increased my dosage but Eltroxin did not make 112mcg so he put me on Synthroid. 3 months later, still gaining weight, doc put me back on Eltroxin and increased the dosage again. He could not satisfactorily answer my question as to why I took Eltroxin for SEVEN YEARS with no problems and then suddenly have problems and weight gain. He just said I am getting old. Not acceptable, imho! I have to cut up my pills and wonder whether the medication is working.

June 14, 2008 at 1:48 pm
(25) Jo Brown says:

Commented before, but had to write again after seeing Patricia Miller’s dosage of 250mcg. daily. I would be flat on my back if I was taking this amount. I am lucky if I can take 12.5mcg every third day. At the last count my TSH was 21, but have not been able to do much about it as I cannot tolerate Thyroxine. Every new brand I try I have to take very slowly. I find that Doctors here in the UK don’t listen to what you have to say, they just leave you to it. It’s as though they don’t know enough about it.

June 14, 2008 at 1:53 pm
(26) Jo Brown says:

Follow on from my previous comment. A couple of years ago my GP stopped me from flying to Switzerland to see my son, the day before I was due to fly because of palpitations. I had to go to hospital and go on the tread machine, the consultant there said, it was probably due to the Thyroxine, but this was never put in my notes. Cover up or what!

June 14, 2008 at 5:14 pm
(27) Lisa says:

I cringe when I read about these awful side effects; I’d not even heard of this brand before. When I was diagnosed 4 years ago they put me on Synthroid and I was on it for a year. Had some heart palpitations, sleeplessness and just didn’t feel ‘right’ though my TSH levels were getting into the right range. After a lot of reading and checking other patients’ comments on various health sites, I asked my doctor to switch me to Armour which is the only NATURAL brand. (Dosage levels are slightly different – i’d been on 75mcg Synthroid which translated to 60mg Armour…there are charts that indicate how the dosages compare). Most people do better on it than on the synthetics. They push Synthroid because it is the most expensive, though the other synthetics are less costly. But with Armour… I can’t explain it but I’ve been on it for more than 2 years now and I feel much better, and could tell the difference within a month or two. No side effects, TSH levels even better and I feel like myself again. I highly suggest people who are having problems with synthetic versions try Armour Thyroid for several months or more to see how they do. It’s cheaper too.

June 14, 2008 at 9:08 pm
(28) Roxy says:

Hi… I have been reading up on thyroid issues this last few days as I believe I have some antibodies present but my doctor doesn’t seem concerned. I want to educate myself about everything possible to do with thyroid meds before I have to go on them if I have to. Does anyone in New Zealand know if Armour is available here as an option to synthetic thyroid meds? I have noted down the Eltroxin brand so I won’t be offered this one. I am extremely med sensitive and react to everything even some supplements. Anyone have any problems with possible Osteoporosis from taking thyroid meds as this concerns me too. Maybe some of you long term users can put my mind at ease over this one. Anyone able to stop taking thyroid meds after a certain time period when antibodies go away?? Cheers for your feedback as I need much info before going back to doc for a follow up test.

June 14, 2008 at 9:16 pm
(29) Zed123 says:

For those of you in Canada, I spoke with GlaxoSmithKline (Canada) on the 12th and the pills distributed here in Canada are still made here. Also, the formulation has not changed at all (folks, the ones in New Zealand have no scoring for splitting — the ones in Canada still do). The fillers have NOT changed.

Health Canada does not allow for reformulation of any drugs without FIRST applying for such. Our supply of Eltroxin is just fine and not involved in this controversy.

June 14, 2008 at 9:39 pm
(30) Maria says:

Any New Zealanders out there know if Armour Thyroid is available here?
I agree That Doctors are not really up with the play. Apparently selenium is necessary to take with thyroid medication, and New Zealands soil is dificient in this mineral. No doctor yet has even mentioned that I should take this supplement.
Getting a T3 level checked is also not normal… where I live anyway.
Strangly enough, a dog will get his T3 level checked out by a vet for thyroid problems
Perhaps I should see a vet.
I see also that a few people have suffered insomnia. I never thought this would be related to thyroid, but yes, have that too for several months.
Wonder if my vertigo, tinnitus and tingly/numb fingers and adrenalin rushes could be part of the whole package as well. Had a wee “google” for
GlaxoSmithKline. Was not impressed.
Many thanks have to go the Americans for the wonderful docmentry/film “Sicko” .Blew my socks off.
It is real good to hear every ones comments .

June 14, 2008 at 9:55 pm
(31) Maria says:

P.S.
New Zealanders who are on Levothyroxine…are probably taking Eltroxin.
NEVER on my prescription, or Bottle of pills have I seen the word “eltroxin”
Always Levothyroxine written ..but have seen my NZHIS data, yep, pages and pages of Eltroxin.

June 15, 2008 at 5:09 am
(32) Jo Brown says:

Armour and (Nature-Throid hypoallergenic), can be purchased over the internet quite cheaply from Internation Pharmacy Services. This company is actually based in the USA. I live in the UK.

June 15, 2008 at 3:59 pm
(33) Jo Brown says:

The web site for the above is internationalpharmacy.com
You can purchase Armour and Nature-Throid without a prescription.

June 16, 2008 at 1:57 pm
(34) Mette says:

Hi fellow thyroid-sufferers
As a health care professional employeed by a pharmaceutical company to collect and evaluate adverse events on my employer’s products and co-incidentally also taking Eltroxin for Hashimoto’s thyroiditis, I can only encourage you to report your experiences to the manufacturer, either their headquarters or via your local offices. That really is the proper way to go, although you may prefer your physician to do the reporting for you. Either way, according to the legislation, the manufacturer is obliged to collect and report such information to the health authorities on an ongoing basis. If the changed formulation is really to blame for the bad experiences you all have, it is imperative that this is brought to the attention of the manufacturer. They may have no idea about this apparently changed safety profile of their drug and therefore be oblivious to the need to re-formulate.

June 16, 2008 at 10:24 pm
(35) alisha says:

I live in Canada and I’ve been worried for weeks about what the hell is going on with my body. Taking Eltroxin for at least a year now and suddenly I’m experiencing these odd symptoms (strange back pain, joint pain, numbness in arms and legs, vision problems, heart racing faster than usual). I’ve had a CT scan, a chest XRAY and an MRI (all normal).
I’m going to get my dosage changed tomorrow, and I’m assuming that the doc. would like to keep me on this drug, but I am going to ask for another option. I stopped for a while and I felt better for not taking it. Very scary!!!

April 16, 2011 at 7:42 am
(36) Nasir says:

I live in Canada. Recently my doctor increasesd my el toxin dose to 150mcg. I begin to have all the side effects that you mentioned. I did not relate these effects to El Troxin. Yesterday I the day in emergency checking my chest pain. They did the usual ECG, blood tests, monitored blood pressure etc and discharged me with reference to the Heart Institute. I am going to get in touch with my physician to check about the dosage. Good luck Alitia. I wonder if there is a support group in Canada?

June 17, 2008 at 4:39 pm
(37) Zed123 says:

Please read above. No need to panic as Canada’s formula has NOT changed! Check with your pharmacist or GlaxoSmithKline to confirm.

June 17, 2008 at 7:27 pm
(38) Julie Smith says:

I have a 14 year old duaghter who was born with congenital Hypothyroidism (No thyroid gland) and as a result has to take Thyroid replacement orally for life. I am very concerned about what is going on here, as we live in NZ, my duaghter has in the past 6 months (since getting her latest prescription refill) begun to suffer from lack of energy, itching skin and serious acne, slight depression, etc, all of which i simply put down to teenage hormones. Now i am not so sure, as it is such a reversal from how she used to be. She has a twin brother who is not suffering from these effects. All this rubbish about having to take tablets on an empty stomach, and not splitting tablets, well up until recently she had no option but to split her tablets to take her required daily dose, she has always taken her tablets at night just before bed (which was what we were told to do 14 years ago) never any mention of empty stomach. She has never had any problems with TSH levels, side effects or anything else … until recently. I tell you what, i am bluddy sick of this govt selling us down the river AGAIN. Cheap is not best. I will be making an appointment with her paediatrician and looking at alternatives. Additionally, these pharmaceutical companies should be held more accountable, they are playing with peoples lives. Just look at the statin drug scandal in NZ to name on other. People SHOULD COME BEFORE PROFITS.

June 18, 2008 at 7:58 pm
(39) Angela Cole says:

My mother has been sick ever since she changed to the new Eltroxin tablet. She went back on to her old medication for a while as she had old tablets, but when they ran out she had to take the new ones again. She lost heaps of weight, got very unsteady on her feet, had muscle wasting, felt dizzy all the time, had problems with her eyes, got very depressed. Her TSH levels were ok but she had an extremely low sodium level. She kept saying the new tablets are not right.

June 20, 2008 at 1:53 am
(40) cheryl says:

Angela —i have the same symptoms as your mom……it is really scarry…i am going off this med…and telling doc i want a natural med….i have been in the er 4 times to be hydrated…i do and than the next day i am thin 100 lbs and cannot gain weight….. muscle loss bad also… email me ok .

cheryl

June 20, 2008 at 2:58 am
(41) Lynette says:

I live in New Zealand and experienced very bad side effects from the New Levothyroxine .I have taking the previous brand for 38 years with no trouble at all. Then ,,giddy head ,weeping,sore, itchy eyes,blury vision,serious back pain , bad neck pain
weight gain,pain in chest ,racing heart. I am now on the Goldshield Brand tablets made in the UK and five weeks later , I am a much happier person with no side effects .I also am looking at taking the whole thyroid ,so this will not happen to me again.

June 21, 2008 at 12:11 am
(42) Pauline White says:

Hi I am in NZ and take whole thyroid. (which is what i think those of you from the US call armour) It is a mix of T3/T4. I have been taking it since April 2007 and find it much better than thyroxine – I haven’t had cause to take the new eltoxine thank goodness. My gp orders my Whole thyroid from Pharmaceutical compounding in Auckland = cost for me approx $36 for 90 tablets each 32.5mcg (on thyroxine I was taking 50mcg).

June 21, 2008 at 2:50 am
(43) Maria says:

From The Southland Times….”The Centre for Adverse Reactions Monitoring wants to hear from Eltroxin users who have suffered side-effects since the thyroid treatment drug was reformulated”
All very well and good. But, many Etroxin users will not realize they are on Eltroxin, the word never appears anywhere on my bottle of pills.
Are these guys monitoring this problem with any seriousness?
Has a “Request” been sent out to all doctors, requesting numbers of Eltroxin thyroid patients with problems? This seems a logical course of action to determine the full extent of the problem

June 21, 2008 at 7:13 pm
(44) Tory says:

I am also in NZ.
After hearing about the news article regarding a change in fillers, I have become concerned. My husband noticed a change in the pill he was taking last year.
On the bottle it says Thyroxine, which it always has said.
He has been experiencing all of the above said symptoms. Is it possible his drug has been changed also ?

June 21, 2008 at 7:28 pm
(45) Jilly says:

Tory – the old pills were yellow, the new ones are white and larger. The chemist may not have changed the wording on the bottle. Actually my yellow ones were always called Eltroxin, whereas the white ones are called Thyroxin, however, they are actually Eltroxin – the new formular. I am meant to take 2 1/2 a day, however with these new ones, must tale 2 one day, 3 the next (which I do anyway, because I can’t be bothered cutting pills in half) You should take take Iron pill if you are on this new Eltroxin. I have done everything correctly, yet am suffering the worse side-effects. I did not realise until 10 days ago that it was these pills. Blamed all my symptoms on other things. Even when I went to my Doctor earlier this year all I got was vit pills, I saw her 10 days ago – she was skeptical, but has ordered the other type of pill, in the meantime she gave me Prozac to treat my symptoms !!!! It will be at least 2 month before the other pills arrive from England – and the chemist tells me they will cost me $150 each three months !!! I am emailing the adverse effects monitoring people because I do not think this is fair. One wonders if we can sue !!!

June 21, 2008 at 7:35 pm
(46) Tory says:

Thanks Jilly
This is really beginning to explain some things.
If you dont mind, can you give me a run down on the symptoms you have experienced ?
Much appreciated.

June 21, 2008 at 9:44 pm
(47) Jilly says:

Hi Tory. Mmmm, I noticed I did a typo – do NOT take iron pills. Symptoms vary from person to person, I am on a higher dose than most people I have read about, so I think mine are more extreme than others. I had the daily dull headache and sore, watery eyes, tiredness so bad that when I was not working, I was sleeping. I work varied hours in the day and evening and would sleep in between, and at night, wake, sleep, wake, sleep etc. I felt exhausted after 2 hours work. I no longer dealt with any minor stress very well (very difficult as I am a Manager) and making decisions was hard. I have all the signs of depression (hence the Prozac)I have noticed my nails are breaking and my hair is dry. It is quite a different feeling from when I have forgotten to take the pills for a few days.

June 21, 2008 at 10:21 pm
(48) pauline white says:

Hi Jilly – WHAT COLOUR ARE THE NEW ONES? The thyroxine sod. I have here (filled march 07 – I switched to whole thyroid in April) are white and the ones I was started on in Jan 07 always looked like this. I was never feeling good on them despite my bloods being “normal” which is why my Gp tried me on whole thyroid. the whole thyroid has been great. But I just got my new lot this week (yet to start – as finishing my old bottle) and they have changed from capsules to a very pale fawny colour tablet

June 21, 2008 at 10:32 pm
(49) Jilly says:

Hi Pauline. The New Eltroxin that is causing all the fuss are white. They are synthetic and it sounds like you are one of the lucky ones who has a doctor that listens. From what I have been reading over the last few days, natural thyroid is the way to go as it treats T3 and T4, whereas the synthetic only treat T4.

June 21, 2008 at 11:09 pm
(50) Pauline says:

Hi again Jilly – well that would explain it – my pills were always white and havet (ELT) at the end of the title – so I am assuming they were always eltroxine- I will check with my pharmacist. I started January 2007 but switched to whole in April. Explains why I felt so crappy, tired, heart palpitations, dizzy, shaky. Noticed an improvement immediately when I started the whole thyroid

June 21, 2008 at 11:48 pm
(51) Jilly says:

That could well be the past problem, Pauline. I am having a blood test this week and will talk to my Dr about getting the natural thyroid – it sounds the way to go.

June 22, 2008 at 12:04 am
(52) Tony says:

I have been on thyroid replacement pills since I was in my teens after my thyroid was irradiated due to extreme hyper-thyroidism. I started on Synthroid in the States, then after moving to NZ 10 years ago, went onto what they had here and didn’t notice any strange side effects until recently when they changed to the larger white pills. My meds were never labeled with anything other than Thyroxine sod. 100 mcg (GLS) the new ones are Levothyroxin 100 mcg which I only noticed where different recently after taking them for a while.

I have developed the following symptoms since the new pills. These include tiredness, constant kidney/back pain, headaches that feel like pressure in my head. I also have nausea especially on an empty stomach, dizziness, blurred vision with itchy watery eyes, and heightened stress levels. I have recently noticed soreness in my throat like the muscles in the front of my throat/neck tightening or spasms, it’s very painful. I also have lots of joint pain, especially knee, hip, and shoulder. I also get numbness in various parts of my body. With a cocktail of complaints like that I figured I must be rapidly approaching my use by date, though at 42 I feel there should be a little more left in the tank.

My wife told me about the story on the news regarding the thyroid drug problems which seems to explain what I’ve been dealing with for the last few months, I’ll ring my doctor and try to get something sorted out, hopefully she won’t just try to put me on prozac.

June 22, 2008 at 1:14 am
(53) Lyn says:

I have been on thyroxine for 13 years now. Lately though I have been suffering lower back pain, sore muscles, weight gain and just put it down to getting older LOL. Had wondered why all of a sudden my medication had to be taken on an empty stomach one hour before food or 2 hours after food. If this medication is supposedily the same, why the change when you take it. Doesn’t make sense does it. So getting old cant be what is causing my aches and weight gain. My hubby has told me this weekend to go to my doc and let her know how I have been and see if I can get the right medication.

I agree, yes the government in NZ needs to wake up, changing meds for cheap stuff just make people sick and causes a whole heap more problems. Typical of this government to take the cheaper options. It will end up costing them in the long run, cause then they have to pay to sort it out.

June 22, 2008 at 2:59 am
(54) Tory says:

Further to my previous comments above.
Late last year the same thing happened with an anti depressant I have been taking for years ( Aropax ). Long story short, I now have to pay for the drug I was taking, that was subsidised until the powers that be went for a cheaper option.

Time for some people power here I think.
Govt and Pharmac and money savings are certainly making for a hefty bill not too far down the line.

Much luck to all having troubles with their meds and the devastation being caused because of it.

June 22, 2008 at 8:12 pm
(55) tasha says:

please, can somenoe tell me where i can buy “whole thyroid” in new zealand. I have only been on thyroxine since late last year and would like to get off it all together

June 22, 2008 at 8:13 pm
(56) tasha says:

where can i buy whole thyroid in nz

June 22, 2008 at 8:53 pm
(57) Lyn says:

What is whole thyroid? Not sure if you could just buy it in NZ as it is probably perscribed by your Doctor.

June 22, 2008 at 10:11 pm
(58) Pauline says:

Hi i take whole thyroid and my gp orders it in from pharmeucetical compounding in Auckland – you can’t order it yourself. Whole thyroid is a T3/T4 mix whereas the tablets most take are just T4.

June 23, 2008 at 12:05 am
(59) Barbara says:

I have been having problems since going on the new formulation in Dec 2007. I only knew there was a change as my chemist said the manufacturers said I wouldn’t be able to cut the tablets. I can quite easily! Lack of energy most of the time plus aches and pains in my neck and shoulders. Didn’t make the connection until I found this on Mary Shomon’s newsletter this week.

June 23, 2008 at 12:36 am
(60) Jilly says:

Hi Barbara. It is not that you “couldn’t” but that you “shouldn’t” If you read the info sheet on these new pills, it tells you that if you are on a half dose, then you spread it over two days. For example, I am on 2 1/2, so I am to take 2 one day, three the next. Apparently with the new mix, it is not a good idea to cut them in half. My chemist did not know that, so had not told me either.

June 23, 2008 at 4:40 am
(61) Tory says:

Lynette

Is this you featuring in the article ?
I am very keen to speak with you regarding this fiasco.

Was your doctor supportive – has it been an easy road to get what you need?

Thank you for bringing this to my attention.

Cheers very much
Tory

June 23, 2008 at 9:14 pm
(62) Lynette says:

Hi Tory, You can contact me on spinner41@windowslive.com.

June 23, 2008 at 10:45 pm
(63) jilly says:

Hey, Lynette and Tory, if you are thinking of starting a group of some kind to work together to solve this problem, I would be interested. I am on another message board and think there are many on there that would also be interested.

June 24, 2008 at 1:23 am
(64) Lynette says:

Hello Jilly,I am in the process of forming a support group at the moment.
Email me if you would be interested.

June 24, 2008 at 2:51 am
(65) Maria says:

Worth a peek……..
http://www.brodabarnes.org/fda_notice.htm
Seems like an ongoing problem.
Quote from source…
“Since 1991, there have been no less than 10 firm-initiated recalls of levothyroxine sodium tablets involving 150 lots and more than 100 million tablets.”

June 24, 2008 at 4:03 am
(66) Tory says:

Lynette

very interested in a support group !!
Will email you from work in the am.

Cheers for what you have done so far

June 24, 2008 at 7:37 am
(67) Lynette says:

Hello Maria,Thanks for that very interesting article .

June 24, 2008 at 6:24 pm
(68) tasha says:

hi, thanks pauline. i have been in contact with pharmaceutical compounding and they are sending me some info for my gp. I would like to know if anyone else has noticed an increase in hair namely on the arms, stomach and bristles on the chin????? what about thinning of your hair??? does that stop???? does your hair regenerate???? thanks maria for the informative article and to lynette i would be very interested in joining your support group as i seem to be flailing around like a fish out of water as no one else i know has this problem…..

June 24, 2008 at 8:13 pm
(69) jilly says:

I’ve sent you an email, Lynette, as I am right behind a support group. Tasha – there is a great thread on Trademe at the moment – you will be amazed, as I was, at how many people have these problems.

June 24, 2008 at 10:03 pm
(70) tasha says:

Hi jilly…. I am having a computer phobia phase at the moment and am engaged in a battle of will with my pc. pc is winning, where on trade me can i find this thread…… much obliged

June 24, 2008 at 11:02 pm
(71) jilly says:

Hi Tasha, yep, i reckon they have a mind of their own at times. It is on the message board, under “general” called “Thyroid people” It is up to over 600 messages now – a great discussion.

June 24, 2008 at 11:40 pm
(72) judy viegas says:

I have been on ELTROXIN since late January and just over a month later I experienced a pain in my left hand then I started to get pains in my feet then night sweats,sore leaky eyes,fatigue, and then both hands became so painful could hardly sleep.I thought this was just old age but now I know differently

June 25, 2008 at 1:43 am
(73) jilly says:
June 25, 2008 at 7:44 am
(74) Maria says:

One last comment, (I think) :)
Eltroxin obviously is a problem, but just as exasperating (for me anyway) is the doctors lack of updated knowledge.
..I wonder if there is possibly a way to get a “Good Thyroid Doctor” list going here in NZ. I see they have them going overseas.
I am on to my second doctor in as many years,
and since I have moved quite a small town, will run out of doctors soon.
Anyone out there have a doctor who is NOT stuck in their own little Time-warp?
I live in Otago.

June 25, 2008 at 5:03 pm
(75) Lynette says:

Maria, What a great idea, we need Doctors who have an interest in Thyroid conditions .My Doctor offered me Whole Thyroid months ago , I should have listened.I live Southland.

June 26, 2008 at 1:20 am
(76) Tory says:

Anyone recommend a good doc in Hamilton ?

June 26, 2008 at 2:00 am
(77) Maria says:

Hi Tory,
In all of New Zealand, this is the only good thyroid doctor I have come across on the ‘net.
Unfortunately I am in Otago and he is in Hamilton, you lucky devil.
Check this out ..rather large link I see, hope it works. http://thyroid.about.com/gi/dynamic/offsite.htm?zi=1/XJ/Ya&sdn=thyroid&cdn=health&tm=39&gps=158_231_1276_591&f=22&su=p284.8.150.ip_&tt=14&bt=1&bts=0&zu=http%3A//www.thyroid-info.com/topdocs.htm

June 26, 2008 at 2:06 am
(78) Maria says:

Hi Lynette, The above link could be a real good site for us Kiwis to put up our Doctors names. The “thyroid friendly” doctors anyway.

June 26, 2008 at 5:02 am
(79) Lynette says:

Hi Marie, Yes, the link worked .
I could consider my Doctor as “Thyroid friendly”
I will think about it .

June 26, 2008 at 6:43 pm
(80) tasha says:

thanks jilly for the direct directions to trade me thyroid group, i was having a severe blonde day. hahahahah. I was never told about free t3&4. I was put on thyroxine late last year after my tsh went up to 19. I had put it down to being parent to 3 darling brats ahahahahaha…… however, i was also ignorant of the connections to other hormonal probs… so if anyone has any idea what would cause excess hair on arms, feet, hands, tummy and bristles on the chin i would be much obliged to you. as it is killing me. i dig at my chin looking for those horrible things and i am wondering if at 29yrs of age my social life is over??????? so please anybody can you help

June 26, 2008 at 7:12 pm
(81) jilly says:

You are welcome, Tasha. Sorry to tell you, but the excess hair is a symptom. Even though I have been on Eltroxin for 35 years – I have that, and shave every day like a man – can’t afford laser and doubt it would work as I am a redhead.

Good news though, CARM is investigating the option of funding WTE.

June 26, 2008 at 7:53 pm
(82) tasha says:

P.S. For tory, lynette, maria and any one else looking for a thyroid friendly doc. try contacting pharmaceutical compounding in auckland, they may have a list of doctors throughout nz for you to approach. i think their site is http://www.pharmaceutical.co.nz also you can try http://www.nhlab.co.nz, they are connected and natural health labs offer a good thryroid support… best of luck to you and also for the southerners where would you recommend to live for a aucklander looking to get her children out of this place

June 26, 2008 at 9:57 pm
(83) Maria says:

Hi Tasha, Thanx a heap for that info.
If you are looking at moving south, (although I live in Otago now) I would go back to Southland if I had my way.
Real people down there. Salt of the earth. Great place to raise children.

June 27, 2008 at 10:23 pm
(84) jilly says:

Sorry Tasha for using abbreviations. WTE is Whole Thyroid Extract and sounds like you are heading down that path.

I saw my Dr yesterday and she doesn’t know about WTE, and my blood tests are odd, so she is sending me to an Endocrinologist.

June 27, 2008 at 11:10 pm
(85) Anna P says:

I have been Elt since Oct 07, with a blood test in Dec 07, T4 10.2 and TSH 21.06,(no T3 done) Dr told to increase elt to 2x50g daily then 3x50g day then repeat days. Until this all came to light, I certainly did not put the 2+2 together. since Jan 08 have had blurred vision, foot pain, back pain, overall joint stiffness, numb hands/pins neddles, itchiness of eyes and general body area, dry skin, general restlessness during day, lack of concentration, waking during the night and unable to get back to sleep, and a restlessness that I would describe a “alligator death roll” in bed. Now waiting to see results of new test and Dr visit. Dont think iam depressed,… yet. :-)

June 28, 2008 at 12:49 am
(86) jilly says:

Anna, your symptoms sound like the typical ones that people have experienced on the new formula, so your tests my not reflect that. It may be that you also need to try another brand or WTE. I would suggest you discuss this with your doctor.

June 28, 2008 at 1:15 am
(87) AnneYoung says:

I have English setters on Eltroxin and am very concerned as they are reverting back to Hypothyroid symptoms. One has gain excessive weight the other has become lethargic and after having sutures removed after recent surgery 2 days later the wound reopened and had to be restitched. He also had a siezure after sedation and prior to surgergy. Please someone do something before it is too late. Their latest T4 test had dropped badly too.

Anne Young

June 28, 2008 at 5:33 am
(88) mohid says:

I am living in Qatar ( Middle East). I also have been using Eltroxin (100 mcg) by Glaxo, Germany since more than 5 years. Like all of you said above, I have experienced the same, severe body pain, moving pain, insomnia,chest congestion etc, when I started using the new bottle. Therefore it’s obvious that it’s not only in NZ but everywhere and it’s true that the new formulae making some serious sufferings. Additionally, I have continuous bleeding from the nose(not severe) since then which would like to know did anyone else have experienced. I appreciate if anyone could help me to know where/how I would be able to get Armour in this region ( middle east)

June 28, 2008 at 6:15 am
(89) Maria says:

Glaxosmithkline letter to Doctors.
The link takes ages to open but it opens eventually,
if not, let me know and I will “Cut and Paste”
TALC!!!! Give me strength,

http://www.medsafe.govt.nz/hot/alerts/Eltroxin.pdf

June 28, 2008 at 6:52 am
(90) Maria says:

Talc (Hydrous magnesium silicate)

http://pesticideinfo.org/Detail_Chemical.jsp?Rec_Id=PC34520

I am no chemist but pictures of skull and crossbones give me the shivers.

How many teaspoons of talc do you think we are swallowing each week, month ??

June 28, 2008 at 8:17 am
(91) catherine says:

I have taken thyroxine for 5 years and a few months ago changed to the generic version levothyroxine. I experienced blurry vision and itchy eyes, increased weight and fatigue. I put these symptoms down to the ageing process. I went to an optician for the first time ever and paid over $700 for a test and prescription glasses. I have been gaining weight fast despite increased exercise. I am so fatigued and fell asleep at the wheel last week, woken by the sound of the wheels on the stone verge, in the nick of time as I was entering a gorge; I subsequently slept in my car. Im so upset to hear that this is all likely due to the replacement drug. I’ve registered my symptoms with my doctor and will do all I can to get off this particular drug. I’m writing this to add my case to the log,which must surely compell the medical fraternity to act quickly.

June 15, 2011 at 10:24 pm
(92) Denise says:

Catherine, I’ve had exactly the same symptoms as you including the glasses and almost falling asleep at the wheel while driving as well as while at work despite being busy (not as if I was bored or anything). I’ve continuously struggled with getting the right dose since I’ve been taking Eltroxin over the last 3yrs and I’ve now gone from being underactive to severely over-active again and this is affecting my every day life and work really negatively. I had radioactive iodine therapy for an over-active thyroid and following that was then prescribed with Eltroxin. Since this my health has just deteriorated rapidly. I’ve now got the on-set of osteoperosis, just had to have a hysterectomy which required three lots of surgery for bladder problems afterwards, I still get blurred vision despite the glasses, gained weight that I can’t get rid of despite eating healthily and exercising, suffer constant fatigue and now I’m suffering from depression too. I’m at my wits end. I’ve had enough. I didn’t even realise that my problems could be related to this drug or that there may be other options available.

June 28, 2008 at 8:35 am
(93) Angela says:

Cheryl how do i email you?
My mum is suffering from such deep depression now she is being treated in a psychiatric hospital. She had always said (before she got so very sick) that the new tablets were causing her so many problems. The symptoms everyone describes are all the same.

June 28, 2008 at 7:10 pm
(94) jilly says:

Catherine and Angela – are you in New Zealand? If so, please report your symptoms to the Centre for Adverse Monitoring Reactions. Their email is carm@otago.ac.nz

I am now on Prozac to treat the symptoms of the reaction until I can change to another brand or whole thyroid extract. Catherine – I too sleep all the time, though with the Prozac I am not as bad as I was.

November 2, 2011 at 2:07 am
(95) casmy says:

do not take prozac, make an inquiry on the internet about prozac and remember knowledge save lives..

June 28, 2008 at 7:27 pm
(96) jilly says:

Maria – I could not open the PDF file

I did read the letter from medsafe which said the new formula was fine and that we should be monitored. Well, my latest blood test shows I am hyper and need to reduce by 50mg to 200mg a day. Yet, my Dr could not explain why I was still tired, lethargic, sleeping all the time even though I am also on prozac to treat the symptoms. She is not aware of whole thyroid extract either. So she has referred me to an endocrinologist.

I also now have anti-bodies which is a tad of a concern as it points to hashimotos.

I

June 28, 2008 at 8:57 pm
(97) cheryl says:

Angela…email me at wldchld8614@aol.com….or and put your wmail on line….i have tons to tell you…hope your mom is better…

June 28, 2008 at 9:00 pm
(98) cheryl says:

angela email me at wldchld8614@aol.com..I am in massachusetts…

cheryl

June 28, 2008 at 9:53 pm
(99) catherine says:

Jilly, thanks for the heads up on the Centre for adverse reactions; i will report my symptoms. In your experience, is it likely that the original throxine formula can be prescribed again at the same cost or is this whole thyroid people are discussing a realistic option? thanks for all your efforts.

June 29, 2008 at 12:05 am
(100) jilly says:

Hi Catherine, the bad news is that the original formula cannot be obtained – it has been superceded by this new one. The good news is that there is one made by another company that can be obtained, or the whole thyroid extract. The bad news is that both of these cost as neither are funded by Pharmac. In my case I am on 250mg a day and the alternative Eltroxin is going to cost me $150 per three months. However…. there is more good news – because of people emailing that centre for adverse reactions – they are looking at getting funding for an alternative. So the more people that advise them, the better.

June 29, 2008 at 3:59 am
(101) Pat Jones says:

Armour is available in New Zealand, but not through the Medical system.There are avenues where it can be obtained, through naturopathic-type practitioners. The New Zealand Medical system almost succeeded in killing me back in 1998, when they burnt out ALL of my thyroid, with only half the dose of radiation they had decided I needed for my thyrotoxicosis.They then proceeded to dismiss this “Accident” and prescribed Thyroxine. After more than a year of shocking symptoms, heart palpitaions, thyroid storms, blocked lymphatic system, and several cardiac arrests, (which the experts decided was a heart problem)I changed GPs more than once, because no-one wanted to believe that the EXPERTS could be wrong. Only after taking the situation into my own hands, and defying the EXPERTS and their minions, did I search the internet for help.
I presented all the evidence from Mary Shomon’s site to the EXPERTS, but they they totally dismissed all the proven research of the many Endocrinologists on Mary’s website. This evidence pointed to the fact that there are many, many people treated with Thyroxine, (which is only the single thyroid hormone T4) whose bodies do not convert the T4 in Thyroxine to T3 and all the other hormones required to run the body systems efficiently. I did not have a “heart problem” as suggested by the EXPERTS. On Thyroxine T4, my body was unable to convert this single medication into sufficient hormones to run my body, let alone give my heart enough hormones to function.It was VERY difficult to obtain Armour in 1999, but I got it with some assistance from some very knowledgable alternative medicine people. I was also able to find an Australian GP who did not exhibit the same “closed mind” that was typical of the New Zealand Health system.
From the many people with hypothyroidism I have met since these sorry episodes, I have to say that so many people have symptoms of being under-medicated. The thyroid tests used by the New Zealand Medical system are the cheapest they can get, and do not show the true picture. From research I have done, it seems that back around 1960s, the correct blood test was then used by the NZ health system, and Armour was the only medication used back then, and very successfully.
Enter the Pharmaceutical Companies who could not make any money out of something as inexpensive as dessicated bovine thyroid. So with their vast marketing dollars and propaganda, they convinced the NZ health authorities that the medicine that had proved highly satisfactory for decades was indeed not safe!! Enter Thyroxine, and the millions of dollars spent on a drug that at its best would slightly improve hypothyroidism, and at its worst, would cause patients’ bodily symptoms to be extremely sluggish, and for the patients whose bodies were unable to convert the T4 efficiently, their hearts ceased to function properly, and if they were even lucky enough to survive, they become permanent Cardiac patients, or else die of cardiac arrest, with no questions asked.The whole question of adequate, suitable, thyroid replacement medication is a disgrace to the indoctrinated views of New Zealand Medical system, and a very very sad inditement on the gullibility of the New Zealand Health system to the propaganda and Corporate/Financial spin of the international pharmaceutical companies.I hope I have given thyroid patients encouragement to listen to their own bodies, and believe in their intuition. There is not a thing wrong with my heart, despite the stress it was subjected to. I am fit, well and extremely healthy on Armour, despite the totally disgraceful medical misadventure I was subjected to.Everyone with hypothyroidism CAN be really fit, happy and healthy. Listen to your bodies, take responsibility for your own health outcomes, do your research, and DO NOT accept that your “Doctor always knows best!”

June 29, 2008 at 4:54 am
(102) Maria says:

Pat, that is absolutely shocking. I wonder how many other people have been abused by the medical system that we do not hear about.
There are so many doctors out there that are brainwashed at Medical School. I am still searching for a Free-thinker. A doc that uses his common sense and logic rather than a “Text Book Twit” that will not be budged in his opinion.

June 29, 2008 at 5:13 am
(103) Pat says:

Maria,
I’d like you to know, that I have a true “free thinker” in my GP. Have to say she was trained in Australia which in itself may not necessarily equate to all Australian Doctors having the same qualities as mine!!Must add that I had to do my own research,find Alternative health care, and go through a “string of Dodos” before I found my GP who was able to “think”!! People like my GP are like gold here in New Zealand!Are you in Otago? My GP is only about 3 hours north if you are.

June 29, 2008 at 5:18 am
(104) shahpar says:

I have moved to Australia beginning of last year. Before I was on Eltroxin,the original one with no problem. In Australia,I had to double my dose on Oroxin or Eutroxsig. After many research, I found there is a problem with these two medication. I also agree that there is a variation between the packs of the same drug. Oroxine/Euutroxsig also need to be kept in fridge, Be taken on empty stomach and the whole lot of other restrictions and this is only in Australia version of Thyroxine and no where in the world! With the original Eltroxine, I used to take it in the morning and have breakfast immediatly and kept it in my cupboard and took half a dose for same effect! But I could buy one month supply as oppose to whole lot that you have to buy in Australia. The company says Oroxine and Eutroxsig are excatly are the same but then why two medication with different price and name. These all have the same active ingredient but rest are different. Believe me, I am a Doctor! These feedbacks are the proof which obviously the Manufacturing companies don’t want to tell peaple!

June 29, 2008 at 6:43 am
(105) Angela says:

Hi Jilly
Thanks for that.
I had emailed the centre for adverse reactions about my mum, but that email address bounced back to me so I looked on the website and sent it to carmnz@stonebow.otago.ac.nz; that one didnt bounce back, so hopefully they got it, they didnt acknowledge it though. My mum is so sick now she is unable to speak up for herself.

June 30, 2008 at 1:46 am
(106) Maria says:

Pat, I have found a doctor…….Yipee !
Through a chemist. Never thoght of it before.
Anyone wanting a good “Broadminded” doctor ?
Ask your local chemist. This will surely save me months and months of wasted time, energy and money. Definately do not ever want to go through what you had to endure.

June 30, 2008 at 6:05 am
(107) Pauline says:

I am in NZ and have been taking whole thyroid (which i believe is what the americans refer to as armour) for 14 mths = my gp orders it from auckland.

June 30, 2008 at 9:51 am
(108) jilly says:

Oh Angela, I am so glad you did, and I hope they listen. It sounds like your Mum needs some real help soon. Is there any way her Dr could try her on thyroid extract – to see if it makes a difference ?

I have not heard from carm either, yet – and that makes me think they are getting so many emails they cannot keep up – which is a good thing !!!!

June 30, 2008 at 6:50 pm
(109) tasha says:

greetings to all. last wk i took in a information packet from pharmaceutical compounding and left it for my docs perusal. yesterday she told me that she had no problem with me going on it but did advise of cost…. upon querying as to whether i had suffered any side effects from thyroxine she was somewhat surprised that i have not in fact my tsh for may was a lovely 3.0, but on supplementing with a thyroid support as well as thyroxine in june tsh levels jumped to 4.8. hmmmmmmmm,, so upon my own experience beware of what you take on top of your thyroxine.. i also read a book by sara rosenthal and afterwards i had to ask myself if there is really a benefit to taking whole thyroid… so i have come to conclusion that i will join the masses and stay with thyroxine… i can only hope that i am not making a colossal mistake. tho in my defence i have to factor in 3 children on a single income and at the end of the day they come first so if i’m not so affected then i shall grin and bear it.i would endeavour to recommend that you read sara rosenthals book as she gives some amazing insights into your own body and so forth……. it is unfortunate that nz is too mean to give people a choice in what medicine they can take….. thanks to jilly for all your advice and help.

June 30, 2008 at 9:27 pm
(110) Phillippa says:

I’ve been on Eltroxin for approximately 4 months after having taken Thyroxine for about 7 years (in NZ). I experienced vertigo, light-headedness, then pins and needles in my feet and moving up my legs (which would not go away). Discontinued use 1 week ago and am not wanting to take it again. Exploring natural options at the moment. NZ Govt provides no alternative to Eltroxin now.

June 30, 2008 at 11:18 pm
(111) jilly says:

Thanks, Tasha. I will look into that book.

I noted you took Thyriod on top of your Eltroxin – I think it should be one or the other, not both. The people I have been discussing this with on the Trademe messageboard, that are on Thyroid all say they feel better than ever – even sleeping through the night !!!

I agree, though, the cost makes you think twice, like you, I am a single mother, so if you are not having side effects, then stick with it. I am hoping Carm will arrange a subsidised alternative for those of us that are having problems. If that happens, I will post a massage on here.

Keep smiling :)

July 1, 2008 at 9:41 pm
(112) Pat says:

What is happening in New Zealand, (and obviously lots of other countries) is a disgrace, but the blame can be layed ‘wholey and soley’ at the feet of the Medical Health authorities who have abdicated their responsibility to provide safe, effective, health outcomes. They have ‘rolled over’ under the spin and propaganda of the greedy, grasping, corrupt pharmaceutical companies. Sadly but true, this corruption permeates so deeply into our Medical/Health systems. The other factor that goes hand in hand with corruption and abdication of responsibility, is the indoctrination of health and medical students by their peers.This indoctrination turns out totally blinkered health “professionals” (I am reluctant to use this noun seriously.) Obviously there are many exceptional Doctors and Medical professionals who have ‘thrown off the shackles of indoctrination,’ and have learned to listen to their patients and do their own research, which in our ‘cyber age’ is made freely available. The Hippocratic Oath states first that the people charged with the responsibility of caring medically for patients must first of all “Cause no harm!!” What a joke, when they abdicate this responsibility to corporate greed.
A book I picked up recently will be a huge wake-up call to all hypothyroid patients. I urge you all to try and obtain a copy, or request it from your libraries.
It’s titled ” A Drug-Free Approach to Healthcare.” Disease Prevention_ Not Symptom Suppression. (Revised Edition) compiled by Dr. David Tanton, Ph.D.
This publication is the Winner of the 2005 Pinnacle Book of the Year Award. The Soaring Heights Series.
Read this publication (Hypothyroidism section) and you will all feel empowered.
You can be healthy, fit and well but you have to take responsibility for your own health outcomes. support available.

July 2, 2008 at 12:12 am
(113) Maria says:

Pat,
I know exactly where you are comming from. I am a quarter of the way through “”Natural Cures “They” don’t want you to know about”" by Kevin Trudeau. FDA Whistleblower.
After whinging and whining to my doctor for months, I finally got in to see an Endocinologist….

Conclusion (Absolutely Magically)
1.
My blood tests are fine,(T3 T4 etc) therefore I should be fine.
(Blood tests fine ….I AM NOT FINE)
2.
If I have been on Eltroxin for over 10 yrs, then it is not the ELtroxin causing me problems
(Yes, you heard me right..It appears that if we all have been on Eltroxin for a number of years, then apparently we are all just imagining our symptoms. Do Endocrinologists have Shares in Glaxosmithkline I wonder? )
3.
Do I want some antidepressants?
(NO.NO.NO.NO…..give me strength)
4.
Never heard of Amour Thyroid, Levothyroxine is the only medication we use.
(Brainwashed??)
5.
Indicated that there is a lot of media hype about Eltroxin.
(Oh Goody, then we are all just going BONKERS. Thats a relief )

So there, had my little grumble, I feel a little better, :)
This site may be worth a peek

http://www.pharmfreehealth.com/warning.html

Having another “anti-doctor day” I am afraid.

July 2, 2008 at 5:09 am
(114) Pat says:

Maria,
before you see the Endocrinologist, do please see if you can access the book I mentioned in my last post, and read chapters 17/18 on Hypothyroidism. All the medical mismanagement you have been experiencing for these years is explained (not condoned though.)Forget the antidepressants, that isn’t what you need. You need a practitioner who gives an absolute undertaking to get your thyroid funcioning at the the “optimal level for you,” not based on that of the “average population” which is used as a guideline by Doctors who are prepared to treat you like one of the masses. This unfortunately appears to be a vast majority of practitioners.
Dr. Rouzier in his book “Natural Hormone Replacement (2001) noted that “In spite of ‘normal’ thyroid levels on standard blood tests, results are only seen with the restoration of the thyroid to OPTIMUM LEVELS” Dr Rouzier cited an interesting 5 year study reported in Journal of the American Geriatric Society, of 347 atherosclerotic patients around 50/50 male and female, only 31 of whom were considered clinically hypothyroid, with lab values at the normal range.ALL patients were given thyroid supplementation and the results calculated. Many of the patients experienced significant improvement and their mortality rate was cut in half of what is usual for this type of untreated patient. The amazing fact of this study is that only 9% had DIAGNOSED hypothyroidism, yet the majority of these patients reaped benefits from thyroid supplementation.
You need a guarantee from your Endocrinologist that he will only accept optimum levels as a satisfactory result for you.I can’t encourage you enough to read the chapters I outlined. There are SO MANY factors which affect the proper function of the thyroid gland. One such possibility is OVERMEDICATION for other real or fictitiously diagnosed illnesses. Low thyroid can manifest as so many other symtoms, e.g. Diabetes, Iodine deficiency, Dehydration, Stress, Trans-fatty acids, elevated estrogen from HRT or birth control pills,Soy, Environmental toxins, fibromyalgia and the “biggie” Depression, just to mention a few! (Doctors love throwing drugs at depression.) Without sufficient knowledge or attention, patients can finish up on a whole heap of drugs supposedly for a host of illnesses, symptoms of which in fact could just be hypothyroidism. Dr. David Brownstein M.D.(who wrote extensively about iodine deficiency in our diets since the 1960s, says “although Synthroid (artificial T4) seldom works, Armour thyroid seldom fails to work.” There is a lot you need to research, Maria, before you see another Doctor. Just make sure you are fore-armed with all the available information. Don’t fall into the same trap of trusting Doctors who may not have the knowledge you need to get you really fit and healthy.I guess you can tell how passionate I am that other women (and men) don’t suffer unnecessarily at the hands of a unethical medical people.

July 2, 2008 at 5:48 am
(115) Angela says:

Phillipa
Thats exactly how my mum started off vertigo, dizziness,pins and needles and then it just went on and on…
I got sent this article which suggests they think there is a problem with the batch of tablets they sent to NZ!

MEDSAFE URGENTLY INVESTIGATING THYROID DRUG HEALTH-ELTROXIN 581 words Jun 25th 2008 1:17pm Politics/Politics

——————————————————————————–

By Grant Fleming of NZPA

Wellington, June 25 NZPA – Health authorities are urgently investigating problems with a drug taken by 70,000 New Zealanders after a rash of reports of nausea, headaches and weight gain.

Medsafe head Stewart Jessamine said today there had been a surge of reports to the drug safety agency’s Centre for Adverse Reactions Monitoring for the drug Eltroxin, which is used to treat hyporthyroidism.

Patients were complaining of nausea, sore eyes, tenderness, various aches and in some cases weight gain.

Dr Jessamine said people on the drug should not stop taking it, but anyone experiencing side effects should contact their GP.

The drug was reformulated by manufacturer GlaxoSmithKline (GSK) a year ago and as a result instructions on how it should be taken had changed.

Up until the last few weeks there had been few complaints, despite the drug being dispensed since July and the same reformulation had been used in Germany for 18 months without problems.

Dr Jessamine said Medsafe was considering the possibility there was a problems with the current batch of the drug available in New Zealand.

However it was also retesting the drug itself and investigating patients’ specific complaints.

National MP Jackie Blue, a breast physician, today questioned health officials attending Parliament’s health committee about what they were doing in regard to the “hundreds of people reporting serious side effects”.

She also asked whether there were alternatives they could turn to if they were experiencing problems.

Dr Jessamine said as well as the various tests the agency was running it had had now required the company to issue information about the reformulation and altered instructions on how to take it three times.

The first two times were to doctors and pharmacists, but it had now taken the unusual step of ordering the company to send out information direct to consumers as anecdotal reports suggested a lot of patients were ignorant of the changes.

Unlike the previous formulation, the new one needed to be taken on an empty stomach and pills should not be split in half.

Dr Jessamine said there was no other subsidised product containing thyroxine — Eltroxin’s active ingredient — in New Zealand, meaning patients had no other cheap choice to turn to.

However Medsafe was working with GSK to see if they could make a different formulation available.

He said appropriate tests were done on the reformulated product before it was dispensed.

He said there had been an upsurge in adverse reports in the past week, since advertisements were run in newspapers and some coverage in regional media.

Hypothyroidism is a condition where the thyroid gland does not produce enough hormones, leading to fatigue and in some cases depression.

July 2, 2008 at 7:02 am
(116) Maria says:

Pat……..
Those 5 comments that I outlined above, WERE from the mouth of the Endocrinologist !!!!!!.
My thoughts in Brackets.
I thought that finally I would get a fair hearing. But came out of that office feeling very humilated and degraded

If I do not get any satisfaction soon, I am throwing away the medication and going it alone.
When my health started going downhill earlier this year, (long before Eltroxin hit the news) I had a feeling that it was indeed something to do with my thyroid, that is why I asked to be changed to Armour Thyroid.
(which was politely ignored by the doc)
And just about cried with relief when Eltroxin did hit the news.

There is no way in the world I am going to stay on Eltroxin. End of Story.
In this land of milk and honey it is a shame that we still have to cry long and loud to be heard.
And I really feel for those Mums with children. I don’t know how they cope.

I have been to the Library and they are sending out for Tantons book for me.

Back to doing my own research I guess.

July 2, 2008 at 8:41 pm
(117) Pat says:

Maria,
Why was I not surprised when you said your comments came from an Endocrinologist!!! There are some good ones in USA which I have read about on Mary Shomon’s site. (That was 10 years ago after I “clicked” to how arrogant, ignorant, indoctrinated and research resistant my then current “Thyroid Expert” was!)
So pleased you are able to access Dr. Tanton’s book. You will need an open-minded GP to help you adjust your Armour doses to suit you.
When I was going through the process of getting the dose correct, My GP always first asked ” How do you feel?” She listened intently to how I was feeling, before she looked at the most recent blood test.The test (especially the cheapskate one done here in New Zealand)is only a guide to use in conjunction with what is going to suit each particular patient, which always varies.We are not all clones, as most popular medical treatments would suggest!!
Go to it. Looking forward to hearing about how well you are feeling in the next while.

July 3, 2008 at 5:43 pm
(118) tasha says:

dear pat. do you by chance happen to reside in auckland????? if so would you be happy to share your doctors name with us????? jilly, both the chemist and the doc advised not to under any circumstances jump off the thyroxine so i was left in some what of a see saw position…….hah they cant even tell me why my thyroid allegedly crapped out all i know is that it was fine in 03 but puttered out in 07… drives me bonkers trying to find out why… and maria… maybe you should get a tee-shirt made up that declares “yes, i do have a brain” maybe then the medical profession will get it…

July 3, 2008 at 5:57 pm
(119) jilly says:

haha, Tasha, I love the idea of that teeshirt, the only problem is – they know a thyroid deficiency can slow ya thinking processes – it sure does with me when my levels are not right.

Does anyone else in your family have a deficiency? It does run in the family – both my mother and my father’s mother had it, so it was highly likely I would – and did. Mine crapped out when I was 15.

July 3, 2008 at 7:54 pm
(120) tasha says:

nope, i’m the sole black sheep for that…. no one has any idea, there is a possibility that my last child caused it….??????? then i was told i shouldn’t have any more children which in turn led me to be bull headed and want another one even tho i had decided 3 enough prior to being told i shouldnt have anymore hahahahahaha. as for slow thought process sure i get that too but it dnt mean to say my intelligence is lowered i can still speak good england. maybe t-shirt should read, “thyroid buggered not intelligence” hahahahahahaha…..

July 3, 2008 at 9:52 pm
(121) Pat says:

Tasha. No, I live in Mid-Canterbury, and my GP. practises in Methven.
If you read the posts I have written previously to Maria, you will be able to access probably all the information you need to realise “why your thyroid function took a dive.”
It’s likely mostly to do with nutrition, (the lack of adequate nutrition.)
Go to google and type in Dr.W. David Tanton, Ph.D.
You will find where to buy his book, the one I recommended to Maria. $40 isn’t much to spend to give you all the information you need to act.When you read the chapters on Hypothyroidism, you will then need an unblinkered GP: difficult to locate in New Zealand under the present Health system.
Your GP will need to be there to assist you to get your thyroid functioning at OPTIMUM LEVELS, but not with synthetic drugs.
Let me know how you get on after reading the important material I suggest. After informing yourself, and taking responsibility for your health outcomes, you will still require the services of a GP to get your Armour (Natural Bovine Thyroid)levels correct. That’s of course if you don’t find that after reading the book that your whole thyroid problem is due to nutritional deficiency. What we are led to believe to be nutritional, safe food actually isn’t! Look up “Jenna’s Journey,” by Rachel Tomkinson, and buy it. You will be gob-smacked, but totally empowered regarding “real food” for you and your family. You can phone Rachel. She always makes herself available.
If you need Armour, you will need a GP who first of all asks how you are feeling, before looking at any blood results, instead of the other way around. Get cracking, Tasha and get well.

July 4, 2008 at 12:02 pm
(122) Carol says:

Hi Folks,
I can totally empathize with each and every one of you. I had severe symptons while on Eltroxin and Synthroid for over 20 years. I hit the wall when I went into menopause , gained weight, itchy skin dry eyes, plantar facaeitis. I finally talked my doc into giving me a natural thyroid(dessicated thyroid) which is similar to Armour. I read all of Mary Shomon’s web page and books and took her advice on natural thyroid. I have never felt better. I have lost 26 pounds and have tons of energy, no skin rashes and feel wonderful. Could be worth a try for all of you if you have a good raport with your doc. Some of them are so arrogant they don’t like the patient telling them what to do. As Mary says – “find a new doc” Best of luck to all of you.

July 4, 2008 at 2:11 pm
(123) Diana says:

I don’t understand why any person would take synthetic thyroid meds. I was on them for sooo many years, and never once did I feel good. When they reformulated Synthroid I gained 50 pounds immediately and felt terrible all the time. (I’m in the U.S.)

I was switched to Armour natural thyroid, and began to feel amazing not long after. I’ve lost 50 pounds in a year or so. I have Hashi’s and have to take a little bit more than my TSH level would indicate in order to feel completely normal. I think resistance is a major piece of the puzzle for many sufferers. My T3 and T4 levels are well within range. I’m so happy that I have a doctor who understands the real ins-and-outs of this disease!

I was very glad to hear that the acceptable range for TSH levels is being officially changed — much to the benefit of patients!

July 6, 2008 at 8:41 pm
(124) john winter says:

I experienced Tachycardia on 150 microgrammes of Eltroxin.I went straight from the old to the new formulation.

In this case you would normally lower the dosage.I knew that Iron, Calcium and Aluminium tablets would inhibit the absorption of medications.I needed T4 but it was giving me Tachy.Between the rock and a hard place.That tachy can leave one in acute anxiety mode for up to 6 weeks.

By taking the Iron tablets 1 hour before the T4 I blunted the edge of the Eltroxin.There was no more tachycardia,so I was killing two birds with one stone…getting some Thyroxine but not enough to get a racing heart.

After 6 weeks the anxiety had subsided to the stage where I discontinued the Iron tablets and continued with T4, onward and upward,though I am not Euthryoid yet.Broda Barnes temperature method is invaluable.

John

July 8, 2008 at 4:21 am
(125) Naomi says:

Hi

Can someone please tell me what Armour is called in New Zealand. My pharmacist cannot find any prescription thyroid hormone medication that contains both T3 and T4, and definately no natural hormone, is this because Armour is a “health supplement” rather than a prescribed drug?

July 8, 2008 at 7:11 am
(126) Angela says:

Jilly
I received a letter back from CARM stating pretty much that the new tablets are exactly the same as the old formula, and must be taken on an empty stomach or be broken in half etc. My mother couldnt have taken them any other way as she got to the point where she couldnt eat, and she never had reason to break the tablets any way. They said they had 250 reports. They also said that with dose adjustments on the new formula symptoms could be overcome!!!!!!

July 8, 2008 at 7:52 am
(127) jilly says:

Well, Angela, they are sooooo wrong, on another discussion thread there are people who have increased their dose as instructed, and I have reduced my dose as instructed. We are all still having side effects. I have slowed down more and need more nana naps, my thinking has slowed.

I wonder why they have not responded to my email, hmmm. I just might email them again !!

July 8, 2008 at 8:07 am
(128) Angela says:

How long are we going to get the run around for, the hospitals are going to get full. My chemist got some of the goldshield tablets that I had to pay for as I was not prepared to take the new ones, but my mother is still really really sick, she has been taking some of the old tablets for two weeks now and so far there is no improvement in her mental health.

July 8, 2008 at 8:17 am
(129) Angela says:

Jilly
do you have a link to the other discussion thread you mentioned?

July 8, 2008 at 8:30 am
(130) jilly says:

Angela – it is on trademe, under General, thyroid people.

July 8, 2008 at 6:12 pm
(131) cheryl says:

Angela how do i contact you can you put your email address in this site or email me at wldchld8614@aol.com..
I am going on levvoxyl now no subtitutions….So no generic…Try get the insurance to pay for this it is a pain….But i will get it through…

Also i am hooking up with a endrocronologist asap…this is goona be real interesting..Let her fight with my insurance tell them this med is toxic..

July 8, 2008 at 11:37 pm
(132) Maria says:

Pat…….Library does not have Tantons book but will try and soure one out.

Jilly…….Angela……..I feel we are merely the “Little People” that are being fed Bureaucratic Bull-Poo.

My feelings are that something in the tablet
(not necessarily the thyroxine part) is either interfering with the workings of the our thyroids or the thyroxine in the tablet.

Probably the only way to know for sure is to change medication and see how we feel in 6-8 weeks time.

Whoever the hell has tested the tablet has obviously only tested it to make sure that what GlaxoWacko says is in the tablet is indeed in the tablet.
How on earth can they say that the ingrediants are fine when they haven’t run a BEFORE and AFTER test/study on anyone.
Why did they change the ingrediants in the first place? Obviously a cheaper recipe for us in order to increase the profits for the company. And they CARE for our health? I don’t think so.
NOw a another little prattle about what has become a bee in my bonnet.
TALC. Have been doing quite a bit of searching on that subject.
It appears that it is a blood-brother to Asbestos, found in the same rock formations and Asbestos has been found in Talc mines and also Talc products.
Talc (Hydrous magnesium silicate). Magnesium silicate fibers are found in Asbestos and Talc.
And Talc is not regulated.
Definately worh a peek.
http://www.jstor.org/pss/3428265
and Asbestos contanimation in Talc
http://www.alaskaasbestoslawyer.com/asbestos-facts.cfm
And another quote “”It is extremely difficult to distinguish between true anthophyllite asbestos, which the government regulates as a carcinogen, and the anthophyllite with magnesium that has been found in the talc,” he said. “They’re almost identical in structure. They have long, thin fibers. They’re durable. They are very hard to distinguish from asbestos and therefore, we think they shouldn’t be in crayons.”"

Bottom line is that the “Big People” say all the ingrediants are safe, it is their theory only, not fact. Whether they are or not is highly debatable.

I wonder if the other ingrediants are as borderline/questionable as Talc.

Alternaive medicine is looking like the only healthy way out of this mess.
Taking charge of our own health with the help of a knowledgable expert.
Once again……..POO to Medical Bureaucracy

July 9, 2008 at 6:44 am
(133) Angela says:

Hi Cheryl
i did email, I have resent it tonight. Let me know if you dont receive it.
Thanks Jilly I will have a look on Trademe

July 9, 2008 at 8:15 pm
(134) Pat Jones says:

Could all the people from New Zealand (who have written or read these posts) who are interested in joining together to do something useful about this Eltroxin debacle please email me at pat.jones@xtra.co.nz.
We have some very committed people on board. The first thing you will need to do is (I will email to you) formulated by a New Zealand pharmacist who has had enough of patients getting the ‘run around’ from the authorities. He is totally committed to ‘getting to the bottom of’ this disgraceful state of affairs.
If I have your email addresses, I can forward you the questionaire.
It asks you: How long you have been on the new Eltroxin formulation. Gives you boxes to tick regarding symptoms, i.e. Depression, Lethargy, Feeling of tightness in the head, Headaches, Face pain, Neck Pain, Body Aches/pains generally, Confusion, Problems with Vision, Problems with vision Colour, i.e. Colour to black, Diarrhoea, Constipation, Constriction of throat, and any other symptoms.
Also:
How much you have spent on visits to Doctor’s, Specialists,
How much on tests for your symptoms that you now realise have been Eltroxin related.
Also:Are you now taking an alternative Levothyroxine.
If so, have your symptoms subsided.
This questionaire will keep it reasonably simple and not consume too much time. You can add your own comments as well.
Once we get everyone to send their questionaires back,(which look like there will be hundreds) we can then begin to implement a ‘plan of attack’ to try and get something useful sorted. We will keep everyone informed of progress as best we can.
So, now is the opportunity to take a really positive step.
“United we Stand!”

To those still on Eltroxin: They need to obtain an alternative thyroid hormone. I have heard there is a Gold Shield brand that works the way it is supposed to. Ask you Doctor or pharmacist.For natural thyroid, which is made up of ALL the necessary thyroid hormones, (not just T4, which many people do not convert efficiently) speak with the naturopath at Auckland Pharmaceutical Compounding, Natural Health Laboratories,
Glenfield, Auckland.
They have available Porcine, natural thyroid. You will need a willing Doctor who will work with you to get your levels adjusted correctly.

July 10, 2008 at 8:39 am
(135) jilly says:

Have you read this site about Soy ?? It is fascinating, and has made me think I will remove soy from my diet as much as I can.

http://westonaprice.org/soy/complaints.html

July 10, 2008 at 7:35 pm
(136) iris says:

tried to email pat.jones@xtra.co.nz with no success .I feel as if I am being slowly poisoned.

July 10, 2008 at 8:20 pm
(137) Angela says:

Iris
give it another try I emailed Pat this morning and got a reply straight away. Just click on the email link in her comment. Are you still taking the tablets?

July 10, 2008 at 9:15 pm
(138) cheryl says:

Angela– Nope did not get your email….try again ok..

July 10, 2008 at 9:47 pm
(139) Anna P says:

I sent Pat an email have have recieved a reply recheck the address.

July 11, 2008 at 1:01 am
(140) Angelac says:

Cheryl
I sent it again to wldchld8614@aol.com
it keeps bouncing back saying it wont accept mail.
Angela

July 11, 2008 at 7:47 pm
(141) jilly says:

NZ is not alone, have a look at this petition in Wales.

https://217.140.43.190/gethome/e-petitions/p-03-137

July 11, 2008 at 8:34 pm
(142) cheryl says:

Angela…..put your email address on this site and i shall email you ok……No idea why this is bouncing back.

July 12, 2008 at 12:48 am
(143) Pauline says:

Is there anyone else in the Manawatu in New Zealand experiencing problems with Eltroxin as (according to my Doctor) I’m the only one!! (I can’t believe that in all honestly)!!

July 12, 2008 at 2:54 am
(144) jilly says:

Pauline – how would he know ??

There is a great discussion on Trademe (under General, Thyroid people) You could ask there. I am in Chch, and I know of several people here, personally.

July 12, 2008 at 3:38 am
(145) Angela says:

Hi Cheryl
its ccole@xtra.co.nz

July 12, 2008 at 6:12 am
(146) Larraine says:

I have been on Eltroxin for years, diagnosed with Fibromyalgia last year.I was taking several suppliments for the Fibro in the course of doing so I for got to take my Eltroxin and although I still have some sypmtom I havn’t felt better in years? interestingly enough our daughter who has had her thyriod out and is also on Eltroxin has just been diagnosed with Fibro too! I’m convinced that hypo thyriod and Fibro are connected and have just started taking the whole thyriod.I feel that if you need thyriod replacement why take a synthetic that only does 1/4 of the job?

July 12, 2008 at 6:46 am
(147) Maria says:

Larraine, there is a new Kiwi site that has just started for Thyroid people. http://keenkiwi.orconhosting.net.nz/
If you have a look under “Really helpful and informative links” and click on “Adreneline Fatigue” you will find Fibromyalgia under “Related Health conditions”
Heaps of info on everything thyroid and a forum to share news and views with other people. Very new but I know it will grow like Topsy.

July 12, 2008 at 9:22 pm
(148) Pauline says:

Hi Jilly..
Can you please give us the link to Trademe – General as we don’t seem to be able to find it!! We can get onto the Trademe site but where’s the “General” bit??

July 13, 2008 at 3:08 am
(149) jilly says:
July 13, 2008 at 3:49 am
(150) Pauline says:

Thanks Jilly will look it up..

July 14, 2008 at 5:54 am
(151) Angela says:

Hi Cheryl
I am receiving your emails and have replied, but it doesnt seem like you are receiving them??

July 17, 2008 at 1:03 pm
(152) Amy says:

Hi everyone. I have been reading your comments and finding them really informative. I live in the UK, have just been diagnosed with hypothyroidism, and very confused and looking for answers. The doctor immediately put me on levothyroxine – 25mcg (which I am told is very little) to slowly introduce it into my system, but two weeks have passed and I feel light-headed, like I’m unearthed somehow and all in my head – with a stiffening neck and a continual headache. And this is only the small dose (I am really sensitive to anything synthetic). I think I am going to chuck these pills away, stop, and have a good think about what I am going to do about this ‘condition’. And from what I am reading here, I am seriously considering going on Armour. Maybe if I start with it, I might not have to go through a hellish time of feeling like I do now intensified as they increase the doses. Would some of you agree that maybe Armour is a good place to start? My doctor told me to bring some suggestions and he’d help me best he could.

Thanks, and although I’m not happy anyone is having this problem, sure feels good to know I’m not alone…
Amy

July 17, 2008 at 2:24 pm
(153) Deborah Jones says:

Lets discuss. Doctors do a thyroid uptake tests, T3, T4 ect… to see if we have thyroid problems The thyroid needs IODINE to create the hormones needed to regulate our body. The blood tests show how much hormone is being produced and used, however doctors don’t do an iodine deficiency test?? So it seems to me that if you are iodine deficient, then you couldn’t make enough hormones to support your body so of course your thyroid tests would be off. With little or no additional testing, your physician puts you on a synthetic hormone. This does not make sense to me. So I started taking a iodine supplements and in less a month I feel like a new person. Of course this would only work if you still have your thyroid. Read up on IODINE deficiency and see what you think.

July 17, 2008 at 6:37 pm
(154) Pamela Thackrah says:

I have Hashimotos Thyroiditis & was dispensed a continually varying combination of generic & branded levothyroxine for 6 years—100mg from one manufacturer 25mg from another, during which time I became quite ill.
May I suggest that all Thyroid Patients,Endocrinologits,Pharmacists & GPs read the following book( details downloaded from the internet)—-
Adverse Reactions to Drug Formulation Agents: A Handbook of Excipients (Clinical Pharmacology, Vol 14)

The adverse reactions produced in patients by various excipients in drug products have only been recognized in relatively recent times, from the standpoints of either frequency or severity. It is believed that the first book to be devoted entirely to the subject was printed in 1989. The title of that book is Adverse Reactions to Drug Formulation Agents: A Handbook on Excipients. The authors: Murray Weiner and Leonard Bernstein; the publisher: Marcel Dekker, Inc., 270 Madison Avenue, New York, NY 10016.
The term excipient, as applied to pharmaceutical formulations, covers all of the non-drug components in a drug product, such as diluents, disintegrants, preservatives, anti-oxidants, colorings, binders, coatings, sweeteners, etc. These many classes of excipients fulfill important functions in the design of drug products. The excipient additives in drug products have, in the past, been described as inert because they do not have an active role in the treatment of ailments. This earlier often resulted in the misconception that they were harmless among physicians, pharmacists, drug manufactures and the public. We now know that this is not true, as evidenced by adverse reactions, some fatal, which may occur to some excipients.
Even with this information, pharmacists are allowed to substitute drug formulations without regard to excipients so long as the active ingredients are the same. In most cases, the active ingredient has been blamed when, in fact, the excipient may be the culprit. It is for this reason that we may find, for example, a patient who prefers one product to another although they have identical active ingredients. This patient may have experienced an adverse reaction to an excipient in one product and the active in Patient acceptance.
In UK May 1997 a quote from a report by Committee on Safety of Medicines states “Many formulation excipients cannot be considered to be inactive – indeed, they may be the primary cause for adverse reactions to the pharmaceutical dosage form. We welcome reports of adverse reactions to changes in dosage form, or to changes from one brand of a product to another”.
This is a global problem & needs addressing urgently.
I now take Armour Thyroid. My health has improved tremendously.

July 18, 2008 at 1:18 am
(155) Judy says:

18months ago I started on Eltroxin, and am hugely relieved to find out that these side effects can be blamed on this drug.I have an ongoing battle with weight,unbelievable itchy red eyes and when I questioned my doctors about the palpitations they put my dose up! The worst at the moment is the dermatitis type rash which is spreading all over me .I have asked my chemist to get me a different brand.

July 19, 2008 at 4:24 am
(156) Thelma says:

Hi. I am from Manila and just started taking Eltroxin 100 mcg only 4 days ago. Last Saturday I couldn’t walk and when I went to my doctor on Tuesday she said that I’m already hypothyroid (low T4) and that one of it’s effects is cramps in the skeletal muscles. I’m taking Eltroxin 100 mcg daily on an empty stomach and since then the pain started to subside but now I am feeling palpitations and insomnia again just like when I was still a hyperthyroid. Do you think the dosage I’m taking is high? I think I should go back to my doctor and advise her. Thanks!

July 19, 2008 at 9:49 pm
(157) Sandra says:

Hi!

So glad I came to this site. Thought I was going crazy. I have been having a terrible time. In the last week or so I have had the ambulance at my house 3 times. All kinds of different reactions, fast pulse, etc. Felt like I was getting hyper and could not understand it as I have been on Eltroxin since last year. Have been on thyroid medications for years having just recently gone from dessicated to Eltroxin. Thought I was doing great but since renewing my prescription its been one compaint after the other. Will have to come off Eltroxin and go on something else. I am from Canada.

July 20, 2008 at 12:31 am
(158) jilly says:

Hi Sandra.
One of the message-boarders here thought that Canada was safe from this new formula, it seems they were wrong. What made you choose to change to it from dessicated ? I am wanting to go onto Whole Thyroid Extract and am seeing an endocrinologist on Wednesday.

July 20, 2008 at 4:41 am
(159) Pauline says:

Hi all..

I have been on 100 Mcg of Goldshield Thyroxine for 4 days now and have not noticed any improvement.. Will keep you informed as to how things go…..
My GP is not too keen for me to go onto the Armour (Whole Thyroid Extract(WTE)). So he will not tell me the dosage I would need. Has anyone any suggestions of the dosage I would need if the Goldshield does not work??

July 20, 2008 at 8:14 am
(160) jilly says:

Hi Pauline

This is the website for the place in Auckland that provides Whole Thyroid. As you will see – you can get them to send you information. Also your doctor can access them to learn about it.

http://www.pharmaceutical.co.nz/

The other place to enquire is our new kiwi thyroid site.

http://kiwithyroid.19.forumer.com/index.php?sid=fd9fd0d612fb1ae56380894fdb706624

I understand that WTE acts almost immediately, where as the synthetics take a while.

Good luck.

July 21, 2008 at 2:16 pm
(161) Sandra says:

This is for Jilly! Changed from dessicated to Eltroxin as most doctors will not go along with dessicated. They know nothing about it and therefore do not relate to it. When a person is on dessicated their blood levels change completely and therefore you can not go by the TSH. Because of this, I thought I would go to just T4(Eltroxin). I give up, I don’t know what the answers are. I had graves disease (hyperthyroid)and drank radio active iodine. Have not been normal since!!!

July 21, 2008 at 6:21 pm
(162) jilly says:

Interesting, Pauline. From all the people I have chatted to that are on Whole Thyroid, they have never felt better – they feel “normal” again – something I have never felt. I always have accepted tiredness, poor memory, dry skin, weight gain etc etc as part of my “thyroid problem” But from what they say – the Whole Thyroid – makes them back to who they were. I am counting on my Endocrinologist to put me on it. I see him on Wednesday.

This is the link to the place in Auckland that supplies it – you can get information from them – as to dosage and testing etc, as can you doctor, they are very helpful.

http://www.pharmaceutical.co.nz/

July 21, 2008 at 6:46 pm
(163) tasha says:

hi everyone,just wanted to ask if anyone else out there feels like they have a knife in their back sensation 24/7. and jilly, can you see a endocrinologist on the public health system and if so how do i go about doing it as i feel that i am speaking latin to my doc who refuses to connect on going symptoms with medication foul up…

July 21, 2008 at 7:03 pm
(164) Pamela says:

I live in the UK & have been reading all the comments by fellow “thyroidians”. I am a member of http://www.thyroiduk.org please, do have a look at this website, there is so much information here. Lyn Mynott is doing an amazing job.
Dr Barry Durrant- Peatfield’s book “The Great Thyroid Scandal & how to survive it” helps one understand thyroid disease, above all else, it helps you help yourself.
He has helped so many in the UK, I have regained a quality of life I never thought I would have again.

July 22, 2008 at 6:36 pm
(165) jilly says:

Hi Tasha

Yes, you can, but need a doctor’s referral, and of course there will be a waiting list.

Mine is costing me $270, but I cannot afford to wait, as if I carry on as I am, I will lose my job. I’ll let you know how it goes – I see her today.

July 23, 2008 at 1:30 am
(166) jilly says:

What a fight I had on my hands with the Endo….
Had my appointment today, and if I had hindsight, I would not have gone, and wasted $270, but found a WTE friendly doctor instead.

The Endo asked heaps of questions, tested reflexes, blood pressure, checked my throat etc etc. I have the blood pressure of a 20 year old – oh yay. Said that my TSH, T4and T3 showed I had been overmedicated, was good that I had reduced, and reasoned I am probably menopausal, I don’t eat properly, I smoke, I have alcohol and drink coffee.

I am not menopausal… I know my body, GRRR

She wanted me to stay on Eltroxin…. then after me being emphatic it was the cause, suggested Goldshield… she was totally against WTE, even gave me a 5 years old study that showed no benefits. She was not convinced about my sister and niece and all the other people on here having problems like me. Luckily I took a friend with me, because I was getting really tired, banging my head against a brick wall. He helped convince her to let me try. But she was insistent it was against her better judgment, and she was only agreeing because she could see I would get it somewhere else. Yep – I would *grins*

Gee, I got up at 1230, here it is 520 and I am exhausted…. am going to sleep for a few hours before I go to work. This is not normal – to need so much sleep – and she could not give me a reason…. hurumph !!!!

July 23, 2008 at 5:44 am
(167) val says:

I am a 67yearold from christchurch and had a thyroidectomy in 1977.developed graves disease in 1987 and have been on thyroxine in nz and oroxine in Australia.100mcg taken daily on an empty stomach and never missed a day.Absolutely no problems until the change in Feb this year.Palpatationstttt and tremors.Thought it was stress due to husbands ill health.Dr. put me on low dose betabloc ,but no change.Became aware of Eltroxine problems and told dr.Am now on goldshield and all symptoms have gone.After reading these comments am going to try for the natural product but dr.has booked me to cardio clinic due to ecg I had done.Might be interesting to have another now?Blood tests all remained in the proper levels but that didn’t explain the hyperthyroidism when I should be hypo if anything.

July 24, 2008 at 6:35 am
(168) Maggie says:

I have had two episodes of positional vertigo in the last six months (i.e. since change in NZ Eltroxin): like a gale whipping me off my feet. Has anyone else experienced vertigo?

July 24, 2008 at 7:07 am
(169) jilly says:

No, but I often get dizzy, as if I am about to faint. And I get funny lights in my eyes now an again (as in tonight – they were really bad)

July 25, 2008 at 6:58 am
(170) Lynette says:

I had funny lights in my eyes two days ago . I have had it happen before .I must say it worries me a little.
I have not felt dizzy though since going off the new formulation Thyroid medication.

July 26, 2008 at 1:19 am
(171) Jenny says:

Jilly and Lynette, interested to read about your comments re lights in your eyes. Is it flashing lights you see when you go out of a lit room into the dark. If so I would recomment you see an optician. I too am now on that new medication, started in February, and recently had flashing lights in one eye, which I mentioned to my optician. I ended up having urgent appointment with my eye surgeon. Diagnosis was slight tear in the membrane of the inside of my eyeball. Due to new meds? I did not think so until now, but may be worth investigating. My eyes have become watery/itchy but not on a regular basis. So far I am not suffering any of the other side effects mentioned but I consume coconut oil daily (great thyroid booster) so whether that is helping to negate the side effects could be anyone’s guess.

July 26, 2008 at 4:49 pm
(172) jilly says:

That’s interesting. I’ve had them occasionally since Dec, but only when I am working – cleaning – so put it down to going too fast. I’ve been told people that get migraines get flashing lights, but I’ve never had the migraine. It’s like a line of light in a half circle with jagged bits sticking out that flashes. Lasts an hour or two. No pain.

July 26, 2008 at 8:22 pm
(173) Jenny says:

Mmm not like mine Jilly. It lasted a few days then disappeared. It was like a flash of jagged lightning and just as quick. I forgot to mention that I also ended up with a large floater at the same time. Mine has been put down to macular degeneration. Sounds as though yours could be connected with the medication. Keep an eye on it as going by all the symptoms mentioned so far they seem to be far and wide. Doing a Google search for possible side effects of the ingredients as a whole I came across a website for Simvastatin (Zocor). It has the same ingredients as Levothyroxine but they are listed as nonmedicinal. Some of the side effects are the same too. Fortunately I have [retrained] my GP over the last few years so I am going to take a list of side effects we are all suffering from as well as the ones from the Simvastatin site to discuss with him.

July 26, 2008 at 9:17 pm
(174) Dawne says:

Have just discovered this site and realize it is the new pill causing all my smptoms. Had total thyroidectomy 15 years ago so am totally reliant on medication. Started new pills last Dec and apart from itchy eyes had no problem till I began a new lot in late April. Since then deep bone pain, tender muscles, thick feeling in head and shoulders, tiredness etc. I wonder if there is something about the new formula that slowly builds up in the body as my symptoms seem to be worsening gradually each week. Over the years I have read a lot about thyroid replacement and how other medications, vitamin supplements and even some foods can affect it but no-one ever warns you about these things. Have been trying to email Pat with no success for the questionaire. Will keep trying.

July 26, 2008 at 9:46 pm
(175) jilly says:

Jenny – may I have that website to add to our growing list of interesting websites? We have our own NZ site now – have a look.

http://keenkiwi.orconhosting.net.nz/links.html

Pat’s email is
pat.jones@xtra.co.nz

July 26, 2008 at 9:50 pm
(176) jilly says:

Dawne – see pat’s email address above.

I think your assumptions are correct, I have got progressively worse as well. I went to the Endo, who would not accept it was the Eltroxin – but has agreed to find out how to prescribe and monitor Whole thyroid. I have now stopped taking Eltroxin – I figure I can go a few days without it – I certainly cannot feel any worse than I do – and amazingly today is my third day and I don’t have that hugely tired lethargic feeling, but tis early days yet.

July 27, 2008 at 12:54 am
(177) Vicki says:

Yes get vertigo everyday and it is a nusiance am hypo and am on levothyroxine I have had a bad throat since july last year and at present cannot even have hot drinks and I am getting worried GP says he does not know what it is, have been to ent and he found nothing now I think it may be these pills.

July 27, 2008 at 1:55 am
(178) Dawne says:

Hi Pauline from Manawatu.
No you aren’t alone in this area. I am through the gorge in Southern Hawkesbay. Went to Doctor for prescription last week and he brought the subject up and asked questions.
Thanks Jilly for your info.

July 27, 2008 at 4:59 am
(179) Lynette says:

Jilly, I have had the same jagged lights at the sides of my eyes , it lasts for a while .I had them two days ago, again. I am wondering if this is a side effect from the new formulation .I have not taken that medication since May .

July 27, 2008 at 5:50 am
(180) jilly says:

Lynette – if you have not had the new formula since May, one would hope it is out of your system by now, but… who knows? It may pay to talk to your Dr about it.

July 27, 2008 at 9:30 pm
(181) NIck says:

Can anyone tell me if this eltroxin was in the bottles labled “thyroxine” or just the ones labled “Levothyroxine”. My wife has had a couple of incidents of severe chest pain this last year for no apparent reason and just wonder if they are related

July 27, 2008 at 9:59 pm
(182) jilly says:

Nick – they will be the ones we are discussing – as they are the only ones available in NZ. They used to be a yellow pill, and are now white and slightly larger – does this sound familiar ?

July 27, 2008 at 10:03 pm
(183) Lynette says:

For those people wanting to contact Pat Jones for the questionnaire. She has been away for a few days but is back again , and working hard to help sort out this ongoing problem.

July 27, 2008 at 11:40 pm
(184) Jenny says:

Jilly, I am going do some more research on the list of compounds in Simvastatin as on taking another look at the site I notice that there is no date on it anywhere and with big pharmas chopping and changing ingredients regularly it may no longer be relevant. I shall see if I can find a site that actually has a date on it and let you know. In the meantime thanks for the link to the NZ thyroid forum. I registered a few days ago after having read the link in one of your earlier posts. Ironically when I have found my way around it properly I planned to reply to a member’s query and looking at her user name looks to be you!! Ref your earlier posts I see you mention the Weston A. Price Foundation website. I am a member of that foundation, and yes any one who is on thyroid medication should definitely take soy out of their food chain. It has the ability to bind our medication. Believe me I suffered for a decade before I was to find out what the problem was. May I encourage you to follow the WAPF nutritional advice. Believe me, you will feel heaps better. Talking to another member earlier this afternoon we both agree that there is a strong possibility that the reason I appear to be having very mild probs with our new meds could be because of my WAPF nutrition. I will only be too glad to help any one who wishes to try it. Or, if you are interested go into their Chapter link and you will find a lot of NZ Chapter Leaders and their contact details there. There could be one near you. I am a Chapter Leader but due to my advancing years I have joined another leader within my area to help her out and it is her email that is now on site, and not mine. Another excellent website with regards to soy is

http://www.soyonlineservice.co.nz/

you will find a lot of information on that site. Take a look at their testimonial link and you will find horrific experiences from around the world.

July 28, 2008 at 4:39 pm
(185) Anna says:

What is a suitable alternative? I don’t want to buy an alternative that is a) dodgy or b) made with the same ingredients.

July 28, 2008 at 9:51 pm
(186) jilly says:

Anna – there are no subsidised alternatives. However, your chemist can get Goldshield in for you, which is also a synthetic and apparently very good. The chemist in temuka who is protesting against Eltroxin has found that no one has had reactions to Goldshield. He is trying to get that subsidised as an alternative – but no success yet.

The other is Whole Thyroid Extract – which is natural. That also can be prescibed by your Doctor – if you can convince them to – many will not hear of it. It can be ontained either by your chemist or direct from Auckland Pharmaceuticals.

This is their link
http://www.pharmaceutical.co.nz/

Another interesting link from them, which shows how to prescribe it
http://keenkiwi.orconhosting.net.nz/Prescribing%20summaries-%20Whole%20Thyroid.pdf

Hope this helps.

July 28, 2008 at 10:01 pm
(187) jilly says:

Anna. There is no subsidised alternative in NZ. The chemist in Temuka who is fighting on our behalf has found that no one has had any side effects from Goldhsield – another synthetic.

The other alternative is Whole Thyroid. This is the link to their site

http://www.pharmaceutical.co.nz/

Hope that helps.

July 29, 2008 at 3:01 am
(188) Marion says:

I also suffered side effects which I suspected was due to the change in brand. It took a few months after numerous visits to the Dr with excessive fatique and tiredness to have bloods taken which showed my levels had changed from the previous three monthly check.
Luckily my Doctor (locum)listened to me and increased the medication to double the dose which brought my levels back to normal although it took over three months to feel better and not exhausted.
Wonderful to have a Doctor that listens to their patient instead of reading the values.

July 29, 2008 at 6:58 pm
(189) tasha says:

hi everybody…… i have ben going down the path of natural remedies and have been reading up on it. i dont know if i’ve asid it before so will claim a hypo moment and say it again. All of the b vitamins can be found in brewers yeast, all the main minerals can be found in blackstrp molasses and i read that wheatgerm and linseed/flaxseed are mighty good for people. because of my own personal run ins with the medical society i have decided to undertake study in naturopathy and will fix myself. thanks for the heads up on the endo jilly, i’ll bypass that now,can’t afford it. over the last month i have had lower back pain like a constant ache, i have noticed that my hands and feet look aged, my heart feels like it is racing and my arms feel disconnected and faint for want of a better word… i don’t know what is going on and am wary of going back to the docs as she looks at me sideways as if to question my intelligence and ability to absorb things… anyway thats enough of my bleating. i hope that all you ladies and gentleman are well

July 30, 2008 at 9:46 am
(190) annelize says:

I am from South Africa and experience severe eye pain, blurred vision, I even started to see the written stuff on my pc in multicolour, my eye test showed it worsened badly,night fever,joint pains, gained 20 kg. The doctors think I am mentally ill if I tell them it is due to the eltroxin – if I stop useing it the pain subsides.I would like to know if there are other people in SA suffering while taking eltroxin.e:mail annelize@coretechno.co.za

August 1, 2008 at 12:04 am
(191) James says:

Thanks to everyone for the helpful info – what a read – I’m now feeling very optimistic I can get myself back to good health. I live in Thailand, and like the Philippines I think we’ve been getting the talc treatment too – my pills were made in Germany. My problems started at the end of 2006 though – the GSK letter linked above talks of July 2007 but that only relates to NZ it seems. I had a thyroidectomy 7 years ago because of cancer and was doing OK until late 2006 when I started getting palpitations (atrial fibrillation) and a whole raft of what seemed to be neurological problems. I was diagnosed by a neurologist as having polyneuropathy, and my symptoms do seem to fit descriptions of this I found online. But reading all the symptoms listed here I think we might be talking about the same thing. The neuro said my muscles were thinning and that seems to be so – I’m looking boney, and like you Tasha I get what you describe as disconnected-feeling limbs (in the polyneuropathy literature this is called ‘loss of positional sense’). I’ve had weakness in muscles too, muscle and bone pain – joints easily injured, dreadful lower back pain, itchy sore eyes (but dry not watery, causing blurry vision), a scotoma in one eye that wouldn’t go away as well as floaters which were put down to macular degeneration (I’m only 44). Also dry skin (on fingers and palms), neck pains (loads of fun when you have a history of thyroid cancer and declined the RAI), bad headaches, ataxia, dizzy turns as if about to faint – sounding familiar? I’ve had some other symptoms which I haven’t seen mentioned here – pains in eyeballs, myoclonic twitch, metallic taste in mouth, and an exasperating habit of rubbing my fingertips together sometimes till I hurt the joints in my hands – all kind of neurological in nature, but I’m wondering if some of the symptoms so many of us share might not be neurological too. The cause of many people’s polyneuropathy is often never discovered, and I just wonder if under-researched excipients might be the missing villain for these people – and if the toxin in Eltroxin might be attacking our nervous systems. Any thoughts anyone?

I’ve managed to find a Merck-made (lovely folks I’m sure) talc-free levothyroxine called Euthyrox, which I switched to yesterday. Is anyone aware of any info on relative actual strengths of different brands? For example if one person finds they need less of a new brand than they did of their old one, then that may be true for everyone, and that would be useful info to put online for others making a switch.

August 1, 2008 at 6:22 pm
(192) teresa in ontario canada says:

i live in ontario canada and i have been taking levthyroxine since 2006 have symptoms: eyes burning, pain, stinging, blurred vision,headaches, weight gain 35 to 40 lbs, swelled feeling in throat, some days right ear pain like pressure, dizzy , sweating around the eyes face area, some days heart palpations, chest pain ,stomach pain from bloating constantly, no energy tired all day and night my hair broke off about 8 inches dry brittle like straw, skin eruptions some days, dont feel like eating, mood crying sometimes sometimes angry levothyroxine 0.075mg violet colour i feel rotten been on since 2006 anyone out there get mixed up forget things frustrated, or spell things backwards

August 1, 2008 at 10:26 pm
(193) Pauline says:

Hi All..
For those who were looking for a conversion chart have a look at http://www.nature-throid.com/conversionChart.asp it might be helpful for those who are looking for alternatives to what they are taking currently.

August 1, 2008 at 11:11 pm
(194) Kahu says:

Have been on eltroxin since Feb 2008, & have been feeling ill with one thing or another since. Have had cramps, vomiting, diarhoea,flushes, & worst of all, palpatations & breathlessness, since day one. I have kept a daily diary of my SVT’s episodes as I have noticed that they have been more common since the change to eltroxin. I got so tired of feeling ill, that I went off it for 2 weeks & lo & behold I felt great. No rapid heart beat, cramps etc. However, after being off it that long I decided to have my blood tested & was told to get back on the stuff as my thyroid results were all out of range. Almost immediately I was crook again. I am on other meds & I do have heart & liver problems, which GP, hospital medical staff & chemist know about. When I have pleaded with them to try & find something else as I believe this is what is causing the problems, NO ONE will listen to me.I have one ally in pharmacy who is helping me.Now I am suffering quite a bit of hair loss, which hasn’t happened before.I have had many a quick visit to CCU & ICU in our hospital since Feb this year & am getting quite literally exhausted.I am off to Waikato hospital for an ablation procedure on my heart next week, so I will be telling the cardiologist of this also.

August 2, 2008 at 2:15 am
(195) jilly says:

Kahu, you are very lucky to live where you do. On this site is a list of Dr’s in the world that are recommended for thyroid problems. The only one in NZ lives up there.

Dr Bill Reeder, Mainstream plus complimentary medicine. Chelation therapy, Irritable bowel syndrome, cancer support alternatives, detox, ME and chronic fatigue, Allergies, menopause, thyroid etc. The Narrows Clinic Airport Road Hamilton, Waikato, 2001 Ph. (07) 856 8568 Fax (07) 859 1212 http://www.skybusiness.com/doctorbill

From what you have said, I would suggest you consider seeing him. It sure sounds to me that you are suffering the side effects that we are.

August 2, 2008 at 2:26 am
(196) Angela says:

Kahu can you email me ccole@xtra.co.nz

August 2, 2008 at 6:28 am
(197) Deborah says:

I started the new formulation in Sept last year broke out in a itchy measle like rash all over my trunk it was slow every few days I would get some more spots Gp thought it was type of Roscea it subsided but came back again in Jan 2008 with the rash came headaches and weak leg muscles this has progressed have difficulty walking limping at times with pain cramps in legs takes all my energy to just walk a short distance now and I am only 44 Specialist can’t figure whats wrong with me. Finally My Chemist is getting the old thyroid drug in from the UK in a couple of Weeks it can’t come soon enough as I was fine before I went on this new formulation.

August 2, 2008 at 3:24 pm
(198) Amy says:

Hi Teresa in Ontario, I have been on the levothyroxine (only 25mcg) for a while now, and I have the crying and the swollen throat thing, along with the anger bursts. I am currently trying to get my doctor to prescribe me armour or naturethroid, but to no avail. All I can say is that I sympathize with you…

August 4, 2008 at 5:45 am
(199) maria says:

S.O.S.

Message for all Eltroxin Users and Ex- Eltroxin users

We need you.

If you would like to join our growing network , give your support, and stay in tune with “Happenings” please contact Pat pat.jones@xtra.co.nz

August 4, 2008 at 9:50 am
(200) Anna says:

Wow – I now know how you guys are feeling! I’ve been in England the last 5 weeks doing an oe and I spent one one week in bed with dizziness and crap hearing. Then I was in town one day and suddenly the world started spinning like hell and I was like uh oh how do I get out of here because I couldn’t stand properly, then 20 seconds later it disappeared! I had a total thyroidectomy when I was 15 (am now 22) and I know I shouldn’t be feeling as crap as I have in the last couple months with constant tiredness and dizziness. I attempted to get Goldshields eltroxin here and apparently I need my NZ prescription….but I’m sure one chemist will break the rules for me. I can’t believe all of us are feeling so crap – there seems to be no one in Glaxo being held accountable for stuffing up our lives temporarily (or permanently…who knows).

Over and out.

August 4, 2008 at 9:26 pm
(201) Dawne says:

I am interested to hear from anyone who has had a total thyroidectomy and has changed from the new eltroxin to either Goldshield or Natural Hormone replacements recently and if there was any difficulties in the changeover. I have now started having the dizzy turns as wekk,not pleasant and want to change but the chemist has told me that the next shipment of Goldshield won’t be in the country until late August or even later and there is no guarantee of any available again when renewal prescriptions needed. He said this would be a real problem for someone who relies totally on them as those without a thyroid do. Any comments from your own experieces would be really appreciated.

August 4, 2008 at 9:36 pm
(202) jilly says:

Hi Dawne

In our own Kiwi thyrpoid forum – there are people that have had that, and there is a discussion group particularly on that topic. Have a look in there.

http://keenkiwi.orconhosting.net.nz/

Hope this helps :-)

August 4, 2008 at 10:12 pm
(203) Dawne says:

Thanks Jilly. Sorry about the spelling!

August 5, 2008 at 2:20 am
(204) jilly says:

Ahh.. I never worry about spelling – tis the message that is more important :)

August 5, 2008 at 8:07 pm
(205) tasha says:

hi everybody, hoe are you???? I promise not to have a mental meltdown this time hahahaha.. I just wanted to know how i would go about requesting the goldshield brand from the chemist and does anybody know if the charges are the same. Speaking of chemists, i was talking to mine the other day and was telling him that after a 6wk course of thyroid support from clinicians http://www.pharmaceuticals.co.nz my tsh levels shot up. he was surprised at this as this thyroid support medicine seems to have a rep for lowering the need for thyroxine. So if any of you folk are willing to give it a go then they can be contacted through the auckland pharmaceutical compounding. have a lovely day

August 6, 2008 at 2:10 am
(206) jilly says:

Hi Tasha

Your dr has to ask the chemist to get Goldshield in for you. It depends on your doasage as to cost. I was on 250mg Eltoxin and was quoted $150 per 3 months for Goldshield, however I have decided to try Armour (the natural real one) I’m just waiting for it to arrive at the chemist.

August 6, 2008 at 7:04 pm
(207) Sarah (Ireland) says:

Hi,

I have hypothyroidism and take 100mcg Eltroxin (Goldshield) daily. I’m not sure if anyone can shed some light on why I’m still feeling so bad…I have ongoing lower back pain, neck pain, headaches, mood swings, sore eyes and low concentration. Also I am in the grip of yet another extremely severe outbreak of cold sores, they’re so bad on my upper and lower lips that I haven’t left the house in days due to the pain & embarrassment. My doctor just brushes these issues off and I’m starting to feel like a hypochondriac!!! I’m only 30, have a 5 year old daughter and should be full of energy & life…but I’m not!! Any thoughts or advice would be very much appreciated.
Thanks,
Sarah :)

August 7, 2008 at 3:47 am
(208) jilly says:

Hi Sarah,
Sorry, but you are the first person I have noticed having problems with Goldshield – here in NZ, it is being found to be the alternative than the Eltroxin we get. People who change to it are back to how they were before.

However, as you are having side effects – can you Doctor try you an another brand? Like all medications – they affect us differently.

August 7, 2008 at 3:51 am
(209) jilly says:

Sarah – what you describe are the side effects we, in NZ (and other countries) are getting with the Eltroxin made by GlaxoSmithKline. Are you sure you are on the Goldshield ?? People here are changing to either Goldshield or Whole Thyroid Extract.

It seems that perhaps you could ask your Doctor to try you on another brand and see how that goes ??

August 7, 2008 at 8:52 am
(210) Pat Jones says:

Sorry I haven’t caught up with all the above for a while. Have been a a bit sick, but on the improve. Have to say from what I have read on my ‘catch-up’ here, there’s some fantastic networking advice and support going out to everyone. It’s inspiring to read.
Thanks to Dawne, it looks as though there will be a story in the Sunday Star Times. Not sure when. Alan (our “Champion” pharmacist) has talked with SS Times today, and hasn’t held back.
I have some good research that should help to make this a front page. The more I research (and delegate research) and get great info from the network, the more I am totally convinced it’s Medsafe/Pharmac and Glaxo and their unhealthy alliance we have to “nail,” AND WE WILL.
We need to continue to keep giving out the information that will help people get the appropriate treatment for themselves. Hope you have all read Pamela Thackrah’s information, as it really spells it all out. “Things we have learned about thyroid.” http://www.Thyroiduk, Pamela also recommends a book by Dr Barry Peatfield.She has been an amazing source of information and support.
We all need to remember that we are all individuals, and with institutional medicine, we have been and all treated like a ‘mob of cows’ in a paddock. That’s not even taking in to account toxic medicines subsidised by MEDSAFE/PHARMAC!
We are ALL DIFFERENT and by supporting each other we will have the courage and confidence to DEMAND individual treatment and respect(from medical professionals)for our own intelligence and knowledge of our own bodies. We have to go the extra mile to find what treatments, doses etc work for us and not be put off by blood tests that say you are fine when you are not, or vice versa. When you find a GP who always asks “how are you feeling” first and then looks at any tests afterwards, then you are on the right track.

August 9, 2008 at 4:41 am
(211) Kelsey says:

is goldshield gluten free?

August 9, 2008 at 4:41 am
(212) Pauline says:

Hi Sarah (Ireland)..

I can equate to what you are saying, as I went on the Goldshield and I did not notice any improvement even after 2 weeks. I stopped it for a week and I feel a lot better. I have taken just one today as it is dangerous to come off the medication completely. Now whether this was the side effects of me coming off the Eltroxin I was taking from last Oct (07) I don’t know, but I am now waiting for a consignment of Nature Throid from the States to see if that improves my “quality of life” as like most people suffering from an under active thyroid [in fact an irradiated thyroid], I feel like crap most days, as no doubt most people on this forum will also relate! It would be nice to go for a walk now and again with my husband, but I can hardly walk 25 metres without my legs giving way! Keep reading and writing!

August 10, 2008 at 6:05 pm
(213) t says:

fff

August 10, 2008 at 6:17 pm
(214) tasha says:

hey jilly, no i wasnt’t talking about goldshield or natural thyroid replacement,i meant thyroid supplement it is different you can buy it in the chemists without a prescription

August 10, 2008 at 8:08 pm
(215) tas says:

Is anybody else finding it hard to read the posts for this subject.

August 11, 2008 at 5:45 pm
(216) t says:

sorry this seems to be the only way i can read all the comments left

August 11, 2008 at 6:40 pm
(217) jilly says:

Tasha, sorry, I have no problem reading them, so can’t help :(

August 12, 2008 at 9:21 pm
(218) Dawne says:

Well I’ve now been on Goldshield for 5 days. From the first day my headache vanished along with most of my symptoms. Am hoping the rest will go in time. Still have flashing lights in eyes. Can now walk everyday and my Brain fog has totally gone. My chemist has been amazing going the extra mile to make sure I have a continual supply for now anyway. Had the visit to the Doctor last Friday armed with all my arsenal. He did appear to be listening but when I mentioned a report to carm he asked me who, what and where they were!! I did get my prescription though and that’s all I wanted for now. I think maybe I shall have a permanent question mark on the top of my file though!!I would like to try the natural one but feel it better to wait for more information to come out publicly. I’m quite sure he would look blankly at me if I asked at the moment. It’s been a great help reading all your comments and made it easier to cope with what was happening to me. Good luck to anyone trying to change brands. Most chemists are now carrying it now even if only in limited supply.22.50 a month for 100mcg. After all my effort at the Doctor’s his last comment to me was his usual. He wanted to cut my medication DOWN .I refused.

August 13, 2008 at 7:23 pm
(219) jilly says:

Well, I finally got my Armour. The endo said she would investigate how to prescribe it. Hmmm, I have to wonder if she did, or is she setting me up to fail because she disapproves of it. She has started me on a massive dose of 90mg a day and they are capsules… so much for starting low and building up.

Have taken my second one today, but if I feel odd, I will halve the powder, and take magnesium etc – I will NOT fail. I will prove her wrong !!!!

August 13, 2008 at 8:04 pm
(220) Lynette says:

Hi Jilly,I have been on Whole Thryoid for three weeks now , started 65mg , I am feeling fine , my hair and skin are much softer .I hope you get the amount right soon.

August 13, 2008 at 10:18 pm
(221) Jenny says:

GSK have recently sold their Eltroxin plus 3 other drugs to Pharmacare in South Africa so I cannot see them being too interested in our problems now!!

http://www.clinicaspace.com/news_story.aspx?NewsEntityId=101885

Mentioned this to a friend who is from South Africa and the only reply I received was “Oh no”. Make what you will of that!

My chemist has managed to source some Goldshield for me which should take me through just under 3 months. Hopefully he will have the promised supply by then.

August 13, 2008 at 10:51 pm
(222) Lynette says:

For those who are interested– a TV One Reporter has an article on the side effects of the new formulation thyroid medication hopefully to be shown tonight on TV one Close up at 7pm.

August 14, 2008 at 3:48 am
(223) Lynette says:

Sorry I gave you the wrong day , my mistake the article will be shown tomorrow.

August 14, 2008 at 9:33 pm
(224) chris says:

I’ve seen the shorts on TV that’s why I have the chance of seeing all this comments. I’ve been on thyroxine for 5 years now and just look at the bottle that i’ve been on eltroxin too since June 2008.And I can totally relate to the side effects I’ve been having very dry skin mostly on my face it’s like dermatitis and a very itchy eyes which my co-worker always seen me rubbing my eyes. Aside from the fact that I always have headache frequently, mood swings, weight gain, i’m always on the diet, never missed my exercise but still gaining weight, everybody is telling me im menopausal, im 42 years old, with graves disease initially and was given Radio Iodine Uptake. I’m blaming the weather with this rashes on my face and never realized that all my symptoms including chest pain and palpitation may be due to eltroxin im taking 2 tabs of 0.05 mg, all my lab test are within normal, seeing my GP on monday regarding this

August 14, 2008 at 9:41 pm
(225) Angela says:

Chris
My mum had all the same symptoms as you but went on to be seriously ill, she is still in hospital. Her blood tests (apart from extremely low sodium) were ‘normal’. She had been on the ‘new’ eltroxin for 6 months. She had no problems on the ‘old’ tablets!!!!!!

August 15, 2008 at 4:05 am
(226) Maria says:

I am very distressed as I have been having problems all year that I attributed to my late 50′s age. The pharmacist brushed off my queries about immediate reactions after two weeks usage. After over eight months usage I have symptoms of nausea, extreme fatigue, migraines, glands up, hair and eyelash reaction, dry eyes and memory problems. I am as mad as hell. I was contemplating giving up work thinking I was past it.This treatment just is not fair or even honest. I didn’t even tell my doctor all of my symptoms as I imagined they were just age related.

August 15, 2008 at 4:05 am
(227) margaret says:

Finally I now know what is wrong with me . Have just watched the programme on close up re these drugs. I have been having dry eyes, optition said it was due to no oil in the eyes, itchy skin, heart palpitations and the worst aches and pains in my body. I have been for blood tests and was told all was normal, I will now be seeing my Doctor on Monday for a change if possible of drugs.

August 15, 2008 at 4:27 am
(228) Jill says:

Hi everyone. Just came to this site tonight as missed the Close Up program and decided to do some online investigation. I have had itchy sore eyes for ages – blurry vision with floaters, extreme leg weakness making it hard to walk far and weight gain. Did not realise what could have been causing all this till now. Mentioned on my last visit to doctor that I had noticed a change in my thyroid tablet and was told it was just the coating that had changed so don’t worry. Now it all falls in to place. Don’t know where to go from here as can not afford to pay heaps for an alternative and also feel if I do this the problem is not being addressed i.e. the government only funding a cheap alternative!!!

August 15, 2008 at 4:38 am
(229) Jessica says:

Wow -( I live in Orewa in New Zealand) I saw this on TV1 tonight and I just cannot believe it. I too have been on “Thyroxine” for over 10 years – but 5 weeks ago, put on Levothyroxine.I have thumped on over 10 kgs in that time. I feel so bloated, with extreme pain in joints, feet, knees, hands, and back.I am often shakey with tremors, and have palpitations, fevers, sweats, and am totally restless all night. (Someone wrote what I feel – that “Alligator death roll” all bloody night. Every muscle hurts just to lie on in bed. I want to stretch and move all the painful muscles that just constrict and tighten up. I feel breathless, wheezy and tight chested. The rashes on my face ate so tight and sting. My eyes are always red, itchy, sore, weeping and tired. My eyesight has deteriorated that I went to the optician to get glasses – I can’t focus on anything. It is blurry…and I am so fatigued that I have had to stop work some days. I am a NZ Registered Nurse and Health Professional – so I know my body.My staff have noted that I am not functioning at all.
I have read the total blogs tonight and I keep saying ” That is me..that is me…that is me…”
I am too tired to fight the System…
Where can we get Armour??? Can you buy it off the shelf in the States?
Do we have to import it?
I am so grateful to whoever started this – I went straight onto the websites after I saw the TV report. Thanks so much.

August 15, 2008 at 4:45 am
(230) Jill says:

Hi Jessica. I too live in Orewa. I also have lots of the symptoms you mention in addition to the ones I first stated but just initially listed my main ones. Went to the GP in February with really bad depression and had time off work. This is really bad and scary. I have been on throxine for about 15 years and noticed changes about January this year when I must have been changed over to Eltroxin.

August 15, 2008 at 5:24 am
(231) chris says:

angela,
i’ve been sick and out of work for a week now, though it is due to cough and colds more so because of severe rashes and itchy dry skin on my face and around the neck area, my eyes too have deteriorated i’m wearing prescription glasses now, i’m on a medical field too from my birth country and in NZ too at least butit never clicked on to me on to the cause of my problem until seeing it on TV, then it give me a clue of looking on the web till i finally seen all this comments in the total blogs and its really me too, i’ve used to take this after my breakfast until this last prescription that says to be taken in an empty stomach, dont know really how long i have been taking this eltroxin, this may also explain why i used to pay 15$ for 3 months prescription then to my surprised i was only ask 3$ for this last prescription i will stop taking it until seeing my GP on monday

August 15, 2008 at 6:21 am
(232) Sarah Barber says:

Hi, I’ve been taking thyroxine since I was 6 weeks old, so 26 years now. Last few months I have been experiencing alot of the same symptoms that many other thyroxine users have been experiencing. Have just found out tonight by way of a new zealand program called close up that they have changed the formulation. I am currently pregnant (6 months) and am struggling with this new levothyroxine substitue. Have heard that there is another alternative by or called goldshield. Does anyone know how I can go about changing to this as I’m struggling with the other one and my dosage has doubled and is still not doing its job. Thanks heaps

August 15, 2008 at 7:30 am
(233) Angela says:

Chris and Sarah
take a look at http://www.trademe.co.nz/Community/MessageBoard/ general thyroid people
there are lots of comments following tonights Closeup programme on tv 1.
this is a serious problem and needs immediate action.
My mother always took her tablets on an empty stomach so it didnt make any difference. she had been on the old tablets for 15 years and 6 months on new. Following 6 months of being extremely unwell she has now been in hospital since mothers day seriously ill.
i got the goldshield tablets from my chemist for me (after phone call from Alan) cost $90, i got my mothers ones from Alan – TeMuka pharmacy, South Island. $15. I strongly believe that without Alans help my mum would not have survived this. She is now getting better slowly, but she should never have had to go through all this.

August 15, 2008 at 5:43 pm
(234) Phyllis Thompson says:

I had bad palpitations while taking levothyroxine with other medications for the heart, ie: betaloc etc. I was never told to take levothyroxine on an empty stomach, and I was never told the tablet had changed. I lerned all of it from the net.

August 15, 2008 at 9:25 pm
(235) margaret, Auckland says:

Since my last comment I have been to see my chemist who seemed to know exactly what I was talking about. Perhaps she also sdaw the programme last nite.
She advised me to speak to my Doctor who needs to imform tha manufacturer of this drug of any complaints as do all doctors so we must go down this road and get everyone to now go and complain and get the complaints in writing.
I am fiftyeight years old for goodness sake and feeling like an old lady, we should not have to endue this road knowing there was a drug out there that suited us all.How hard for the drug company to go back to making the old one????????????????

August 15, 2008 at 10:47 pm
(236) jilly says:

Hi to all the newcomers, and I am so glad you saw the close-up programme. We have been trying to get this into the media for a while. For those that missed it – here is the link to watch it online

http://tvnz.co.nz/view/news_minisite_index_skin/news_close_up_group

Yes, Armour and Whole Thyroid Extract are available in NZ – your Doctor can prescribe it. Your chemist can get it from Pharmaceutical Compounding in Aucland, it takes a couple of days to arrive. Their website is wonderful and has a lot of information about thyroid issues and medication. Print off information and take it to your Doctor. Their website is

http://www.pharmaceutical.co.nz/

Click into public access, then thyroid.

Please, please send a report to CARM (Centre Adverse Reactions Monitoring) You can email your health reactions to them – the more they get, the more they will realise this is a HUGE issue – we MUST fight for funded alternatives. Their email address is

carmnz@stonebow.otago.ac.nz

Also, Alan Campbell (the pharmacist from Temuka) is fighting a battle for us to get funding for alternatives. Please contact Pat Jones and ask for a questionaire – she is collating the information for Alan. Her email address is

pat.jones@xtra.co.nz

Alone we are weak, together we are STRONG and we will win !!!

August 16, 2008 at 1:50 am
(237) Kelly says:

My friend has been hospitalised for 3 weeks after falling over and hitting his head, due to vertigo. He was on Thyroxin since his first brain tumor was removed 6 years ago, he had the second removed this year in Jan, when in March he went to get his meds and noticed that the name had changed, the chemist said that it’s the same. He started getting vertigo, exttremely low blood sugar, 32deg body temp, rash, disorientation about 3 weeks later. After MRI’s, CT Scans, EEG’s and blood tests nothing showed up. I saw the news last night and bingo realised the Levothyroxine was the problem, it was to much of a coincidence. I wanted him off it but because there is no other drug in the country he has to stay on it! He is still in Hospital and is being given Eltroxin even though it’s the cause of him being in hospital in the first place!! The NZ Health Dept and Medsafe and Glaxo have alot to answer for, how could they do this to people, it breaks my heart to see him like that in a hospital that is supposed to be saving peoples lives not killing them and nothing is being done!!

August 16, 2008 at 5:48 am
(238) Angela says:

Kelly
go to http://keenkiwi.orconhosting.net.nz/
there is a contact for Pat Jones and other information.
Also look back at 127 Pat Jones posting. You may be able to help your friend by getting him to fill out the form as well. I really feel for him. My mum is in hospital too, but the doctors were wonderful and her to take the Goldshield.

August 16, 2008 at 10:23 pm
(239) Elaine Dewhirst says:

Since being changed to 50mcg LEVOTHYROXINE I have had many side effects and with my long history of thyroid problems I KNEW something was wrong. However I followed instructions to continue taking the Levothyroxine medication on an empty stomach and I cut my dosage as prescribed. I had a blood test a couple of months ago and heard nothing so I presumed the blood test was normal. I continued with tiredness, falling asleep whenever I sat down and sleeping for 12 hours at night, muscle weakness, indigestion, itchy head and eyes, hoarse voice, headaches, swollen ankles, weight gain, nausea, feeling cold (iceblocks for hands and feet) etc. I have a long history of (undiagnosed) thyroid problems until I became very ill with hyperthyroidism for which I was treated with radio active iodine and surgery and afterwards I became hypothyroid with little or no thyroid function and I was prescribed the thyroid replacement treatment drug ‘Thyroxine’. For years this drug worked perfectly until I was prescribed Levothyroxine. The failure of the drug Levothyroxine is a real setback for me and I hope urgent investigation will reinstate the earlier ‘Thyroxine’ drug which was so successful for my thyroid replacement.
Note: In both my maternal and paternal families there is hyperthyroidism and hypothryoidism and yet they say it is not hereditary.
I have carried on dragging myself around, watching my diet and walking to keep fit.
I am desperate to get some relief. Can anyone leave a message here and tell me where I can purchase the Goldshield brand of thyroxine which others are finding successful.

October 12, 2011 at 9:26 am
(240) Nino says:

Hello
I am also in England and for about three months feel changes and all those symptoms you mention and others that write here.
What do you think about open a page that anyone who has same symptoms and is in England to join for a lawsuit against the company that distributes this drug?
Write to me: nino.aziz9@gmail.com

Thanks

August 17, 2008 at 1:05 am
(241) Angela says:

Elaine
it would help the cause also if you can fill in the form also on the same website, listing the side effects you mention above. We are hoping to be able to at least get the Goldshield or another suitable form of thyroxin subsidised. My Goldshield cost me $90 for 3 months.

August 17, 2008 at 1:09 am
(242) Angela says:

Elaine
the first post didnt seem to go through.
the website http://keenkiwi.orconhosting.net.nz/
lists information on how to get the Goldshield tablets. Alan Campbell the chemist that has believed in us and helped so many has a post there.
It has many useful links as well.

August 17, 2008 at 4:14 pm
(243) Jayne Jolly says:

I too am so angry after watching Lose up and then reading all thiese comments. I have been on thyroxine for over 10 years . My health has gradually deteriorated since Dec 07. About the time the tablets where changed. I have been to my GP twice, with concerns over the possible negative effects of the new medication and also to the pharmacist. They all insisted that the Health authorities have said its fine and it couldn,t possibly be the tablets. I have all the symptoms everyone is describing, including very bad vertigo, that has now been diagnosed as benign paroxysmal vertigo, I have muscular sorenes and cannot get a decent night sleep, waking all the time with headaches, that often develop into migraines. Have been to physios, had MRI of the brain , have constantly been generally unwell and feeling as if I have no get up and go. I am an ex registered nurse and know my own body and on one hand it is a releif to have this all exposed finally but on the other hand is very scarry as I have to keep taking this poison until I can find some other source. Someone surely needs to be held accountable for causing so much loss of qualituy of life for all of us suffering from these complications. I am just so angry for being fobbed off for so long and being made to feel as if it was all in my head.

August 17, 2008 at 9:02 pm
(244) Nicola says:

I am so amazed at the doctor’s and pharmacy’s reactions to this problem. When I spoke to my doctor regarding the new medication he knew nothing about it and didn’t care either, after I had blood test showing my TSH levels had risen to 9.1(the range should be 0.4 – 4)and my free T3 & T4 had decreased and all the symptons I was experiencing he just said it wasn’t a problem and that there was no other medication in this country so just had to cope (not acceptable). I am so sick of some doctors and the lack of interest in their patients it just seems that they are only interested in your money and not helping. I have felt neurotic for the past few months but now feel vindicated after the information on the TV. I am already taking 150mcg a day so not sure what to do regarding increasing my dose as it will just increase the product that is causing all the problems but I know I can’t keep going feeling like this for much longer no energy or strength, no motivation, sore blurry eyes, painful joints, excessively cold, sore kidneys and feeling unwell. At least I have a supportive family who understand this is not my normal behavior.

August 17, 2008 at 9:15 pm
(245) jilly says:

Nicola – there ARE alternatives available in NZ and are prescribed by Dr’s. It just takes educating them and standing up for your rights. I am now on Armour and doing wonderfully well.

Please read our NZ sites, and you will get all the information and support you need.

kiwithyroid.19.forumer.com/index.php?sid=36df21026dcd6ad69b3075e4ea7caa3b

http://keenkiwi.orconhosting.net.nz/index.html

August 17, 2008 at 11:17 pm
(246) Glenys says:

I’m a 63 year old living in Auckland, New Zealand and have a medical condition called Hypopituitarism. I had my pituitary gland surgically removed 13 years ago as it had become a Pituitary Adenoma. I have to take Hydrocortisone and other medications and was taking a yellow Thyroxine tablet (with no side effects) up until November 2007 when I changed over to the new white Eltroxin tablet.
I am now experiencing many adverse side effects which are gravely effecting my health and well being. They are:-
Lethargy – continuous fatigue and unwellness
Eye problems – sore, dry eyes
Aches and pains – general all over body aches and pains
Weight gain – have snacked more to gain energy
Mild depression – frustrated, as no matter how hard I try or what I do the unwellness and fatigue remains
Increase in Cholesterol and rise in Blood Pressure
I luckily was watching the news last Friday evening 15/08/08 when all this controversy came up about the new Eltroxin. I was somewhat relieved but with undertones of anger
I have since been online to find out as much as I can.
I have seen my GP today 18/08/08 and he was very helpful, as was my pharmacist and will start taking the Goldshields brand shortly which I hope will be better for me.
I will let you all know how I get on.
I do find all your comments very helpful.

August 18, 2008 at 12:12 am
(247) Angela says:

Glenys
we REALLY REALLY need you and everyone else with problems reading this to fill out the questionaire Pat Jones has made and also contact CARM with all your complaints.
http://keenkiwi.orconhosting.net.nz/index.html
will give you all the information you need.
CARM is the Centre for Adverse Reactions Monitoring, Box 913, Dunedin or email them
carmnz@stonebow.otago.ac.nz

August 18, 2008 at 12:48 am
(248) Jan says:

For those who missed Close Up’s article, here is a link, not sure if it will work or not. Insulting for Medsafe to imply its just old ladies with “its all in their minds” illness.

http://tvnz.co.nz/view/page/2006958

just over ten minutes long

Please everyone write to CARM and tell them you are not neurotic and that you are ill. My son has had a remarkable improvement since moving back to the Goldshield brand

August 18, 2008 at 4:41 am
(249) Angela says:

Jan
from comments on the trademe link, it looks like Closeup may do a followup.
my mum who has been in hospital for over 4 months is much much better. and looks like she will be home in a few weeks!!!!!! It is remarkable seeing the change in her. She is on Goldshield.

August 18, 2008 at 8:59 pm
(250) john says:

hi, ive been feeling less well since changed from the old [yellow] tablet Tyroxine, to the new Eltroxin tablet. i have an uncomfortable throat at times, slight swelling of the glands after taking it in am, i have headaches 2-3 times a week, and sore joints. My bowels are now irregular . My levels are ok under tests but the side effects are new. I also have sore eyes at times.
My question is why, if the old tablet was serving the public so well, would the company change a winning formula? There is no doubt in my mind that some deviation from formula has saved some money for somebody, somewhere?

August 18, 2008 at 11:08 pm
(251) Nicola says:

Jilly – Thanks for your reply, I have been reading that website. Does anyone know of any Doctors in West Auckland that would prescribe Armour.

August 18, 2008 at 11:19 pm
(252) Angela says:

PLEASE
Please everyone reading this who has a problem with the new tablets in NZ can you fill out the questionaire Pat Jones has made and also contact CARM with any side effects you are experiencing.
http://keenkiwi.orconhosting.net.nz/index.html
will give you all the information you need.
CARM is the Centre for Adverse Reactions Monitoring, Box 913, Dunedin or email them
carmnz@stonebow.otago.ac.nz

The trademe thread has been removed which is such a shame as it had a lot of good information on too. There has been a new thread started.

August 19, 2008 at 1:29 am
(253) Robyn says:

hi everyone in nz and hi to those around the world reading this

reading through these comments i feel so sad that so many are reliant on medications for the thyroid, and suffering side affects.

there are many ways to reboot the thyroid if you are lucky enough to still have yours and lucky enough to locate the right doctor.

to me my visual is; the thyroid is like a set of kitchen scales that requires precise balancing to provide the perfect ingredients to run and manage all of our bodily functions and there are so many feedback systems that go directly to the brain to inform our thyroid just exactly what our body requires.

there are many varied reasons why this balance can throw out and a great doctor can assist you to figure this out.

i had subtotal thyroidectomy in nz in 1998, my medical records read that there had been signs of previous hemoraging in my thyroid tissue before removal. my thyroid antibodies were high and no medical person, no doctor nor endocrinologists x 3, could tell me why antibodies high, or why my nodules continued to grow.

in 2001, 3 years after operation i figured out the cause and took it to my specialist. i was shut down quickly and he would not take my report.

if i had known the cause before the operation i would still have my thyroid tissue in tact today and living a normal life.

in 2002 i met a toxicologist in Tauranga whom saved my life, providing me the right treatment options, then began my journey to find the correct thyroid support for the missing tissue.

part of this journey is to learn about the right nutrition that suits you and your metabolism. we do not all have the same dna, so it makes sense that we all have different needs and requirements.

got hold of my medical records and researched medsafe recommendations. medical errors surround my surgery and subsequent loss of tissue.

if i can save one persons thyroid from the knife with my story, then great, makes it a bit better.

moved to melbourne 5 years ago, could not resolve thyroid support, my tests were reading i should be dead or in a coma, what a long way we have come… my claim with acc was constantly rejected even though off the record my research and having located and treated the cause was commended. the medical professions that treated me all turned against me even though none of them actually knew nor comprehended the full story, they got reprieve… had to leave it all behind, no resolution.

we live in a world where everyone is saying no more to school yard bullies, well perhaps we should all be saying this to the medical profession. no more bullying!!! i heard they take an oath to look after their patients first and foremost, which means listening to their patients and supporting them and their list of complaints and symptoms trying to find the solution that fits them not the latest drug recommended to prescribe.

now we are back in nz!!!!

there are some really great dr’s here in nz, sorry south islanders, i only know of ones in Tauranga, Auckland and Wellington.

Going on the site of Australian collegue of nutrition and environmental medicines in melbourne might advise you if there is a local dr in your area whom will support you.

i also obtained great support from natural health laboratories. from what i can fathom about the reactions everyone is having, and from the experiences i had, it is likely the fillers used in these products. quite often if we have a thyroid disfunction that would lead to complications in absorption? and best to avoid gluten and certain other fillers. i can’t do cornstarch either. for me 2 options for thyroid support, 1 whole thyroid or the other which i am about to follow down is to see if i can obtain a T4/T3 supplementation made to order as Dr Sandra Cabot mentions in her book about thyroids. good luck everyone.

i also have a book from the lady here mary whoms website we are on.

from what i also understand our thyroid requires iodine, l-tyrosine, selemium, vitamin c, b vitamins and the right copper – zinc ratio to perform, and we all require these supplements or the right nutrients that are easy to absorb.

before my loss of thyroid i was advised to take kelp, this just made it worse for me so once again think it is really important to find the right doctor whom knows what they are doing to work with you as a team.

perhaps one day when everone finds their way we could all get together and path the way for others.

August 19, 2008 at 3:54 am
(254) margaret, Auckland says:

My Doctor today wasnt really interested in hearing what I have learnt in the last few days from the T.V. show and all your above interesting comments. He just wanted to prescribe more drugs for the heart palpitations that I am now experiencing and all the other complaints. My answer to him was stop prescribing the poison and write to the drug company and tell them what you are hearing from your patients. Dont give me more drugs to counteract the poor drugs our Government are allowing into this country.
Again we need to get all Doctors to make note and submit letters to the appropiate heads.
My Chemist seems to be more understanding of what is happening out there and is more than willing to try and help me.

August 19, 2008 at 4:08 am
(255) jilly says:

Good on you, Margaret for sticking to your guns !! Yes, we are doing a lot to get information out there – if you want to join us, please contact Pat Jones.

pat.jones@xtra.co.nz

Robyn, I totally agree. You will find alot of great links on our kiwi site

http://keenkiwi.orconhosting.net.nz/index.html

I have had an underactive thyroid for 35 years, and just accepted the way I was. So one of the benefits of this debacle is I have learnt so much about food and vitamins etc that will either help or hinder my health.

Keep smiling :)

August 19, 2008 at 4:27 am
(256) Robyn says:

Pat,

ta for your reply, i checked out your site all i can say is “you go good thing” and yes i will support in any way i can…

my dr here precribed eltroxin whilst we are trying to find out about the T4/T3 supplementation and i was almost desperate enough to take it but all my good work would be undone…

i got back to nz, got pregnant then miscarried due to not enough thyroid support…so am determined to move forward.

if you are healthy and happy you have all the wealth in the world….

in nz; we were the first women in the world to get the vote and it looks like united we will make change, i think it is great that mary got involved and took an interest….

and i am so impressed this website was set up, this is fantastic, thank you to all!!!

was finding it hard being back, but now i have hope, it is the great gift…

August 19, 2008 at 8:05 pm
(257) Jacqui McLaren (NZ) says:

I have been on Thyroxine/Levothyroxine since June 2007 and have never felt so sick in all my life. After numerous doctors appointments and one trip just recently to A & E (hospital) only to be told I wasn’t having a heart attack, and body aches, sick to the stomach 24/7 and headaches 24/7 put down to stress. I didn’t have any stress until after they removed my entire thyroid and I started on the medication. I go to sleep at night hoping I don’t wake up. My doctor told me last week I have 2 options. 1. Take the meds and put up with the side effects OR 2. Stop taking the meds and die. Whooa what a choice.

August 19, 2008 at 9:04 pm
(258) Robyn says:

Hi Jacqui,

i really feel for you. which area of nz do you live in and perhaps one of us on this website might be able to recommend a dr in your area.

the other alternative is to call natural health laboratories to see if there is a dr whom can supply you, i know of one in wellington dr tessa jones, karanga health ph 04 389 0800, she comes up to auckland once a month and i used to have phone consultations with her when i lived in melbourne.

hang in there, there are better days and hope, and lots of medical people out there whom do care…whom are trying to make a difference

August 20, 2008 at 12:58 am
(259) Ian S. says:

I am a young man and had both Thyroid glands out in 1999 and had zero problems until late last year. Now I have constant soreness in the eyes, both arm joints are now so sore I cannot pick heavy things up, extreme dryness causing the skin on the tips of my fingers to crack (very painful), constant fatigue so I go to bed tired and wake up tired again with no relief, I only have enough energy for 1/2 a day, memory is affected and I have trouble doing the most basic things now, and my eyesight is also affected. The recent TV news article about the pills being changed and the associated problems some people are having made me quite angry because I was never told by either my doctor or pharmacist about these changes. I have booked into another doctor for tomorrow (21 August, 2008) and I am demanding to be put on the Goldshield brand ‘Levothyroxine’ so I can see over the next few weeks\months if my condition improves. Fingers crossed !!

August 20, 2008 at 1:10 am
(260) Angela says:

Ian can you look at posts 243 and 246.
also the thread on trademe, community, general, thyroid people. We all need to stick together on this. It is looking like there is a shortage of Goldshield at this stage but there is more information about this on the above sites. It is serious!!

August 20, 2008 at 4:30 am
(261) Pauline says:

I was absolutely disgusted to read Jacqui’s comments at (248). I understood doctors were under some hippacratic oath (or something like that). The first thing you do Jacqui is get yerself another GP. I bet if this was the States he’d be liable. This is supposed to be New Zealand we’re living in, not some third world back water. The more I read about this, on this and other sites the more I am determined to bring these people to account. Looking at the TV1 programme the other night I very nearly threw something at the TV. These people are very obviously smoking something!!!!

August 20, 2008 at 4:58 pm
(262) Kez says:

Wow..I know how you feel!!! Please get another doctor because there is supportive doctors out there with other options.

August 21, 2008 at 2:23 am
(263) jilly says:

Look at this link – news added this morning. Sounds like they KNOW the cause of all our problems !!

http://www.scoop.co.nz/stories/GE0808/S00101.htm

August 21, 2008 at 3:17 pm
(264) Henri says:

Adverse reaction center had more than 600 complaints about the new Eltroxin. This will mean that more and more people are going to turn to natural hormones.
Here is a scientific article I wrote:
http://thyroid.erfa.net/index.php/The-Project/position-paper-scientific.html

August 21, 2008 at 5:24 pm
(265) kez says:

Hi Henri
Where do you get these natural hormones in NZ?
Would love to know.

August 21, 2008 at 5:52 pm
(266) tasha says:

hi, i haven’t been on for a while. WOW!!!!!!!!!!!!!!!!!!!!!! huge info. My question is, has anybody got an uncontrollable tic in their eye area and have you noticed that your, skin, especially the hands seems to be ageing really fast?? I read earlier that there is a doctor in auckland who has a brain and open mind, would it be possible to get their name please much obliged.

August 21, 2008 at 7:46 pm
(267) Dawne says:

Yes Tasha I have.Also Just found out the meds I’v been on for 2 weeks isn’t Goldshield but another brought in to fill the gap. Was too brain fogged to note it when I started. Has worked very well but now what do I do now changing on to Goldshield as the new lot is and tests? Chemist says it’s exactly the same in a different box but when I read the notes has differing binding so just hoping no more changes to the body. Ah will it ever end.

August 21, 2008 at 8:19 pm
(268) Kerry says:

Yes I have an uncontrollable muscle spasm around my left eye – is that what you mean Tasha?

August 21, 2008 at 9:35 pm
(269) Dawne says:

Was anyone else given the Almus levothyroxine tablets instead of Goldshield as a bridging while waiting for the Goldshield and if so were there any adverse effects felt after finally going on the Goldshield? So far I have had none on the Almus one. After finally being rid of all the shocking symptoms I am a bit worried.

August 22, 2008 at 12:24 am
(270) Kerry says:

Dawne
I just started on the ALMUS last night as there is no GOLDSHIELD available. It is good to hear it is working for you – I sure hope it works for me too.

August 22, 2008 at 1:44 am
(271) Dawne says:

Kerry I have felt better on Almus than I have in the 14 years since my op. Good luck.

August 22, 2008 at 2:00 am
(272) Dawne says:

Kerry I feel better now than I have done since the op 14 years ago. Good luck. Allow about 2 weeks.

August 22, 2008 at 3:47 am
(273) Robyn says:

Kez,

you can get these natural thyroid tablets called whole thyroid in nz, from “natural health laboratories’ in glenfield auckland. they really are a great product.

August 22, 2008 at 4:06 am
(274) Robyn says:

Tasha,

two dr’s i know in auckland that are really well informed are dr helen smith, holistic medical centre, pt chev, n dr jan raymond in mt eden. good luck

August 22, 2008 at 4:51 am
(275) Pauline says:

Hi Tasha (257)
Yep I have had the “tic” in my right eye at times and it was on and off for about 5 weeks. Also had a very bad vein rupture in my left eye last week-end. I also get a droopy right lid that makes me look like Quasimodo and the top part puffs right out like I’ve been involved in a fight. I can actually see it hanging over my eye.. I look real choice!!! Thankfully I have a very loving and considerate husband!!
I tried getting Nature-Throid from the States but unfortunately a prescription is required and they are not allowed to send off shore!!
My GP refuses to prescribe Nature-Throid for some reason!!!

August 22, 2008 at 7:50 am
(276) Veronica says:

HI

I’m in South Africa, you recon these new Eltroxin pills have reached here yet?
I have been experiencing serious heart palpatations the last few days as well as headaches and sadness.
I am astounded that pharmacies dont let you know theres been a change and that one might experience side effects this bad or even at all. For all of you have been told your getting old or menopause blabla, yeah, thats the usual response. Thyroid is still the most misunderstood disease, when is someone with a medical proffession going to realise they need to do something about it.

August 22, 2008 at 2:10 pm
(277) Tippa - NZ says:

250 – Ian, was on the same crap since last Oct, went off it in to other brand and within 2 days was feeling great..still a couple of niggles but hay.. its been only a week and have a life now.

August 22, 2008 at 4:21 pm
(278) Heather says:

I live in South Africa and was diagnosed with Hashimoto’s in 2002. Was on Eltroxin since then and also had very severe itching of the eyes, I was treated with eye drops called StopAllerg which really helped, since reading about the Eltroxin problem I insisted that my Dr change my medication. I am now on Diotroxin and feel much, much better. I complained about the itching eyes for years! It seems that Drs don’t give two hoots about their patients wellbeing, it seems to be all about money – keep you coming back!
Patients should start sueing the Drs and pharmaceutical companies for negligence! Maybe then we’ll be taken seriously.
I finally feel almost human after 8 years of struggling!

August 23, 2008 at 12:32 am
(279) Angela says:
August 23, 2008 at 2:28 am
(280) Angela says:

For those in NZ
Listen to NewstalkZB Sunday morning (24 August) at 9:30am, Alan Campbell will be on as well as Dr Jackie Blue, the Health spokesperson of the National Party

August 23, 2008 at 3:26 am
(281) Angela says:
August 23, 2008 at 6:17 am
(282) phillippa says:

Have started on the new goldshield tablets ,after 23 year on the old ones with no problems.
Am still feeling worry about all the changes,.
Wonder where in new zealand you can get the natural brands. Is any one taking a product by clinicans thyroid support at the same time as the gold shield.
Also what foods should you not be having ,have read about soy on this site ,after all this time no one has ever talked about foods you should avoid
Many thanks

August 23, 2008 at 7:27 am
(283) Heather says:

Here in South Africa I have found the following products that REALLY HELP :
Turbovite by Nativa email address: health@nativa.co.za, website: http://www.nativa.co.za this product has really helped with feelings of depression, cleared the brain fog and given me energy. Only way I could get through a day! I take 1 or 2 per day depending on my schedule.
Real MSM by THRESHHold produced by S.A. Natural Products (Pty) Ltd this natural product works fantastically for PAIN and JOINT DISCOMFORT, it is the only product that has been able to ease the pain of my fibromyalgia and headaches! I take up to 8 per day.

August 23, 2008 at 6:41 pm
(284) phillippa says:

good morning ,have i missed mr campbell on radio or was i on the wrong station.

August 23, 2008 at 9:10 pm
(285) Angela says:

For those that missed Alan Campbell and Jacki Blue it was on at 9.17am
You can listen to it on your computer

http://www.newstalkzb.co.nz/weekondemandWN.asp
go down the list to August 24th 9am then fast forward 17 minutes.

August 23, 2008 at 11:03 pm
(286) Renee NZ says:

I am the mother of a six year who was born with congenital hypothyroidism. My daughter has been on the newly formulated eltroxin for about nine months and I firstly find it hard to believe that pharmacists were given relevant information to pass on to patients about the new formulation. When I went to collect her first supply of the new pills I was only told that the pills were now smaller. My daughter usually chewed the tablets but the taste of the new ones had changed and she wouldn’t take it. I then tried crushing the tablet as I had done when she was smaller but the pill wouldn’t crush easily and then stuck to the side of the cup as the liquid went down. I went back to the pharmacy questioning why this was happening and my very lovely pharamacist contacted the appropriate people. After two frustrating phonecalls my pharmacist informed that he had little information other than that the new tablets had not been tested to see how well they would be absorbed with food or liquid but he was not told they needed to be taken on an empty stomach. He was very annoyed and asked that I pass this info on to her doctor at the hospital.

Fortunately my daughter managed to learn to swallow the tablets whole and I didn’t think much more of it at the time. When the reports started on the news etc I did take an interest however I heard little about the side effects people were having other than headaches. About three months ago my daughter’s teacher informed me that my daughter was having trouble seeing the board at school and suggested I get her eyes tested. I didn’t jump on this immediately as she has had her eyes tested in the past but after hearing her continual complaints about having sore and not being able to see things properly I took her to an optician who said her eyes were fine. That was about a month ago and I didn’t think any more of it until a few days ago when my daughter had her blood test. The nurse taking her test began telling me about her own problems on the new formulation to which I commented that I thought my daughter hadn’t been effected but she had been complaining about blurry sore eyes. The nurse then informed me that this was one of the symptoms which everyone had been complaining about.

I have since been having a serious look on the internet and also at my daughters previous blood test results. Her TSH levels have been all over the place from ‘normal’ to borderline hypothyroid and then rocketing right back down to the other end of the scale. Her levels have never been so erratic. My daughter has had days off school with severe constipation (she has always suffered but takes a large daily dose of lactulose)and has been complainig constatnly of sore this and that.

I have not seen any reports of children suffering side effects but definitely believe my child has been through some changes and I feel guilty that I didn’t take more notice of her complaints. I think if both children and animals are suffering side effects as well it puts a big hole in Medsafes theory that it is psycho symatic. My daughter has her 6 monthly hospital appointment this week so I will be very interested to hear what the endocrine specialists have to say about this.

August 24, 2008 at 12:16 am
(287) Kahu says:

Angela, can’t send email, keeps bouncing Re:- comment 186. Email me kahua51@xtra.co.nz

August 24, 2008 at 1:02 am
(288) Robyn says:

Pauline,

natural health laboratories sells nature-thyroid. i could not obtain this in oz without getting it brought in from states and natural health laboratories assisted me by sending it across from nz via a dr in wellington dr tessa jones prescribing this to me. i am so grateful to their assistance as i was in serious trouble at the time. good luck

August 24, 2008 at 1:21 am
(289) Angela says:

Kahu
you have mail

August 24, 2008 at 5:25 am
(290) Pauline says:

Thanks for that Robyn.. will give that a go…What a hassle just to get some pills to bring your quality of life back to normal. I hope every GP in the country is reading this forum and it will open their eyes to what is happening here in New Zealand and overseas for that matter !!!!!

August 24, 2008 at 7:30 pm
(291) Dawne says:

We have just listened, on demand, to the interviews on ZB Talkback from yesterday. Very good. Shame they weren’t played nationwide and so many will have missed them. Where would we be without Alan and Pat.

August 24, 2008 at 8:02 pm
(292) roha says:

I’m not getting Alan Campbell and Jackie Blue at the radio link provided. Have tried Aug 23 and 24 at both 9 am and 9 pm. Can someone tell me is the onfo correct?

August 24, 2008 at 8:12 pm
(293) tasha says:

hi…. i just would like to thank pauline, kerry and robyn for their infor… I had written a longer message than this one but the computer threw a hissy fit and chucked it and now i’m going to claim a lazy monday and just say thanks to you ladies and have a lovely week. And roha, i had the same problem too couldnt find it at all

August 24, 2008 at 8:17 pm
(294) Ian S. says:

Hi Roha – try this link. The discussion starts at 16 minutes 50 seconds into the audio. If your audio player doesn’t start automatically you can also manually copy the link, then start up Media Player and press CTRL U then paste the link into the box provided, and press OK. Hope this works fine for you.

http://www.newstalkzb.co.nz/thisweek/hourrecsWN/Sun,%20Aug%2024%2009.00%20TRN-NEWSTALK-ZB-WGN.asf

August 24, 2008 at 10:26 pm
(295) Marina says:

I just found this web site – and need some help. I’m in Christchurch and have been taking thyroxine and tertroxin for over 9 years after a thyroidectomie (thyroid cancer). When Glaxo’s new formulation came in I got very unwell – numbness in my arms – so bad that I couldn’t sleep for more than 10 minutes at a time, and, probably as a result, extreme tiredness. Also headaches and joint pain. My GP got Goldshield’s Thyroxin for me and within 3 weeks my problems were a thing of the past. I pay 120 Dollars every 3 months to get this medication. Now my pharmacist gave me Almus Thyroxin. Has anyone tried this? I’m very reluctant to try it – I just fear to get unwell again and also – when I’m paying for this medication I’m not at the mercy of some penny pinching Pharmac clerical worker – or so I thought.

Also – is there any possibility of getting funding?

August 25, 2008 at 12:32 am
(296) anna p says:

I have been on Almus for over a week now, had been on ELT 75% and getting better.

August 25, 2008 at 12:36 am
(297) anna p says:

Forgot to say..Alan said it is the same as goldshield. I noticed 2nd day after taking it that a lot of the problems had gone. Still have a couple things but hell its only been a just over a week.

August 25, 2008 at 12:57 am
(298) Jan says:

Renee

Don’t accept 6 monthly reviews for your 6 year old as “what must be”. my son is only two and since this all begun we’ve been having 4-6 weekly results as, like your daughter, my son has gone from being really stable to all over the place. Every time his doctors try to move me to six monthly reviews i just put my foot down. Until we have again a drug that works and allows our child to learn without impediment, there is no way i’m moving to infrequent reviews.

August 25, 2008 at 1:40 am
(299) Dawne says:

Marina I have been on Almus for 2 weeks and feel great. Wish I could have it all the time but have been told no more coming into NZ. Have just picked up my next lot and it’s Goldshield. A real worry never knowing what you’ll get next isn’t it or even being sure you’ll be able to get anything.

August 25, 2008 at 2:56 am
(300) tasha says:

hi,,, while trolling through the emails from the thyroid forum i came across one advising to request thyroxine sodium from health support. does anybody else know of this and is it any different to thyroxine/levothyroxine???????

August 25, 2008 at 4:06 am
(301) roha says:

Thanks Ian S. That link got me there.Go Jackie Blue!

August 25, 2008 at 6:40 am
(302) Marina says:

Thanks for the replies re Almus Thyroxin – I’ll try them then.

Hallo Tasha, I get mine from Health Support now but they don’t deal with patients – only with doctors or pharmacists who slap at least 40 Dollars on top of what the medication costs. It costs me 120 Dollars for 3 months supply to get Goldshields and now Almus. But for me its really worth it – I was a wreck on Glaxo’s Eltroxin. I’m alive now.

A bit further up in these comments I found a reference to a new kiwi thyroid forum with petitions going so that an alternative to Galxo’s Eltroxin will be subsidised. The more take part the better the chances.

August 25, 2008 at 4:08 pm
(303) Susan says:

I have been on Thyroxine for 14 months and 6 months ago, I developed symptoms which I now believe are the side effects of Levothyroxine.
They include heart palpitations, shortness of breath,extreme tiredness and sore/itchy eyes.
Last evening, my GP took me off Levothyroxine completely for a fortnight, to see if my symptoms disappear, and then my situation will be reviewed, with more blood tests etc. Partway through the 14 months that I have been on Thyroxine, the name on the container changed to Levothyroxine, and I have been told by my pharmacist that the ingredients (excipients)in the drug were altered at that time. I think that was earlier this year,2008.

August 25, 2008 at 4:58 pm
(304) Ian S. says:

Thyroxine = Levothyroxine (name changed).

NZ Levothyroxine (ELT) (Thyroxine) production moved from Canada to Germany.

The information I’ve been given is that the two forms of Eltroxin contain different fillers:

1. Canadian Eltroxin: acacia powder, cornstarch, lactose and magnesium stearate

2. NZ Eltroxin: microcrystalline cellulose, pregelatinised starch, talc, colloidal anhydrous silica, magnesium stearate.

August 25, 2008 at 6:13 pm
(305) Susan says:

Yesterday, my pharmacist tried to access the Gold Shield brand of Levothyroxine for me from “Health Support Limited”. They faxed him back, saying “Due to the unforeseen volume of orders for the Goldshield Levothyroxine we are unable to source more of this product.” Surely this is an indication of what is going on “out there”, as people realise what the reformulated Glaxo Smith Kline brand is doing to their bodies. They are playing Russian Roulette with our health, and need to be held accountable!

August 25, 2008 at 6:35 pm
(306) tasha says:

susan are you auckland based????? and what dosage are you on??? may be able to help you with goldshield dilemma???? you can text me on 0211357418, just in case i can’t reply to you

August 25, 2008 at 7:18 pm
(307) tasha says:

has anyone else noticed a dramatic slow down in hair growth and that the hair tends to get oily really fast????

August 25, 2008 at 8:15 pm
(308) Rosie says:

Copy of what I sent to CARM. I am writing to you as I am encountering quite severe effects from taking Eltroxin.

I came to New Zealand from the UK in March 2005. In the UK I was on Alpha Thyroxine 200 micrograms daily, as my thyroid had been removed back in 1988.

Upon visiting my doctor here in Wellington, I was prescribed Eltroxin, small yellow tablets. Up until October 2007 I suffered a few minor problems with my levels and had gained weight significantly enough to warrant signing up with a gym to try and get my metabolism jump started and to get fitter and hopefully lose some of the weight. At about the same time, my Eltroxin tablets changed to the large white one, and I suffered quite a severe reaction to them over the next three months which in turn led to my doctor prescribing Losec as I had developed a reflux condition and was nauseous most days.

My next prescription was filled with the yellow tablets again and the symptoms subsided and I started to feel well and continued with the gym and diet regime.
I have just had my prescription filled again but this time it is with the white tablets and only 1 week into taking them, I am now back on 3 Losec tablets a day, feeling extremely unwell and have had 4 Ocular Migraine attacks. My joints in my knees and ankles hurt, I have a constant headache and I am bloated and feeling horrendous. Despite this I still visit the gym 3 times a week, with pain relief taken beforehand, but have so far put on 7kg in weight and now considered obese. My heart resting rate is at 112 beats per minute and I have a BMI of 36. All of which cannot be explained by the health experts or my doctor.

I have just visited my pharmacist who has advised me that this Eltroxin is all that is available, nothing else and suggested I visit my doctor, but said that there would be nothing that he could do as this was the only drug available. I am at the moment thinking of just not taking the medication as it is making me so ill.

My doctor was not available to speak to but the nurse at the surgery suggested I look up Eltroxin as she had heard that there were people suffering side effects to the new tablets and I have now found your article and responding.

From what I can gather from the information available, it is the change in base ingredients that I am having a reaction to.

The only option available to me is to try and contact my health authority in the UK and see if they can send me my old Thyroxine tablets, if this is not possible, then I will not be able to take any thyroid medication at all.

If a person was allergic to penicillin but was told that that was all that was available to treat them, would this be acceptable and penicillin given despite the possibility that it could make the person ill or kill them? I am obviously allergic to the base ingredients, but I am being told to just put up with it as it is all that is available.

So what next?

I will look up the links regarding the Armour natural brands, but if they cannot supply because of high demand what is left? I am soooo depressed about it all and sooo fed up with being treated like a demented middle aged hypochondriac!!!!

August 25, 2008 at 9:19 pm
(309) Susan says:

Hi Tasha – No, I am in Wellington, but really appreciate your offer, thanks. My doctor wants me off them completely for a fortnight, from today, to see if all my heart palpitations, headaches etc. disappear. So far today, I feel better than I have for months – maybe it’s psychological, but I think my GP is on the right track. I will keep you posted as to what happens over the next couple of weeks. Should be interesting!

August 25, 2008 at 11:43 pm
(310) NewKiwi says:

And how about those with thyroid cancer, they cannot just stop, but when you already had all sort of treatment with it’s side effects and now have the bad pills, you can’t just stop taking them, but if you take them you feel awful or even really sick.
Stuck between a rock and a big stick is what I call that!
Can’t wait for replacement, but have to, at least 6-8 weeks the pharmacy told me.

August 26, 2008 at 3:30 am
(311) Renee NZ says:

My daughters doctor at the hospital gave me a script today for Goldshield as she has changed other children over to it resulting in thier sie effects disappearing. However when I went to the chemist my pharmacist said that they have just been informed that Goldsheild is no longer able to be imported into New Zealand. She said that GSK have patented Eltroxin to stop other brands being used so that they are the only supplier. I was also given a script for an alternative to Goldshield which my phramacist had never heard of but and they are checking to see if this is available or not. Does anyone else know about this?

August 26, 2008 at 4:51 am
(312) Jenny says:

Hi Renee,

Check that information with another chemist. My chemist is getting Goldshield albeit in small amounts at the moment. He has a bulk order in and he has not been told that it is no longer being imported. Some more arrived just today and I picked it up this afternoon. The patent for this drug has expired and GSK have sold it to Aspen Pharmacare in South Africa.

http://uk.reuters.com/article/hotStocksNews/idUKWLA564520080630

August 26, 2008 at 5:20 am
(313) Marina says:

My pharmacist, too, said that Goldshields was no longer available due to too high a demand and gave me Almus Levothyroxine instead. I had concerns but got three positive replies here a bit further up in the comments. I’ve started taking them today and am still alive. We’ll see how the night goes.

I’ve never been well on the Glaxo Eltroxin – only after taking Tertroxin in addition to Eltroxin did I feel ok but when the formulation changed I got really unwell.

August 26, 2008 at 5:34 am
(314) Jenny says:

I have just checked the Trade Me thyroid forum and it has been reported there that Goldshield is no longer being imported. I have emailed Sue Kedgley (Greens) and asked her if she can look into it urgently and advise us what the real situation is.

August 26, 2008 at 5:51 am
(315) Angela says:

I have copied Alan Campbell’s comments from the Trademe thread He is the chemist from TeMuka that has helped so many.

‘Goldshield and GSK’
“Goldshield has the trade name “Eltroxin” in the UK. Glaxo Smith Klein have the trade name “Eltroxin” in Germany. They are having a ‘spat’ as to who owns the name, and since GSK Eltroxin was first in NZ, they think they have the right to the name here in NZ. Until this issue is sorted, I am working every possible moment to secure an acceptable replacement – which I have. The situation has come as surprise to EVERYBODY… and believe me when I say, there are a lot of people working hard behind the scenes to make sure everyone’s best interests are at the forefront.”
“to clarify – Goldshield IS STILL being manufactured. I have had discussions with the manufacturers to see what can be done. Discussions will continue. I’m sorry, that’s all I can tell you… except to say, there are times I feel like a voice in the wilderness doing the work that should be done by those responsible, or who should be responsible. I’m quite satisfied with arrangements I’ve managed to make. It won’t please everyone – but it’s the best I can do under the circumstances, and the drug is high/top quality. That’s all I can say right now.”

August 26, 2008 at 6:23 am
(316) Ross says:

Hi,I have been taking Thyroxine 36 years.Was not told about the change in formulation. Started getting dizzy, no energy, lost muscle strength, dry skin,memory loss, depression etc. I think I was being poisoned!!Found some Goldshield in Hamilton and am starting to feel I am coming back to life. Alan, the chemist from Temuka, I thank you with all my heart. Cheers

August 26, 2008 at 6:39 am
(317) Robyn says:

check out this website http://www.thyroiduk.org and go to treatment…this will inform you about ingredients in all…unsure about almus…

i am looking for a t4/t3 synthetic version to see if it can be imported into nz, could do this in oz…but the best alternative that i learned (if you are ok with pork) is nature-throid which is called whole thyroid here and sold by natural health laboratories…

when a thyroid throws out there are many issues to look at..ingredients and what you might be allergic to..celiacs disease and lactose intolerance can play a part and it can take a long time to learn just what triggers this….like mentioned before i cannot do cornstarch…and i am allergic to pig…

so i wish you all good luck and good health and it is important to research what you take and what is in it…at present i have 1/8th tissue and am only taking bio thyrodine drops, iodine and potassium and l-tyrosine…it all adds up…another product i found great was transfer factor plus…it has colostrum and a whole lot of other goodies in nutritional factors in it…kept me alive when all else failed. so good luck to all wish you health and happiness…

oh and if you get a chance always good to look at allergies causes and rebooting the thyroid if you can….if i knew 10 years ago what i know now i would still have a full thyroid intake and be living a normal healthy life..

recently i miscarried due to not enough thyroid support…

take care

August 26, 2008 at 6:48 pm
(318) tasha says:

ren’ee, if you are auckland based, there is a chemist in manurewa in south auckland, who has just got a supply in for 100mcg goldshield and is expecting a shipment of 50mcg later this week…. I don’t have the phone numbers but the name is Leabank Pharmacy, Weymouth Road, Manurewa. Pharmacist, Kerry Oxenham

August 26, 2008 at 7:30 pm
(319) Colleen says:

I have been on Thyroxine since 1995. I put my change last year down to stress at work after thinking I was having heart attack August last year. July this year same thing happened again but I went to my Dr. and now awaiting hospital appointment to check out heart. I tried to find out from my chemist when new tablets started as Closeup said July last year but were still using the old name. My chemist didn’t know until May 2008 when they handed out side effects of Levothyroxine and changed the name that they could have been getting the new tablets that early. My Dr is good and we have done tests and my thyroid counts are good. I am still getting chest pains(not enough to rush to A&E) numbness and tingling in my hands and they get so cold and I get tired. After reading everyone comments I am now thinking this has been the cause of my trouble and keeping my fingers crossed it is. Until I have the test done on the heart and if they come back nothing wrong (the same as August last year) i will be looking for new tablet as I am not going to put up with this anymore. The Government should be doing something about this pill that has caused so much stress to so many takers and we can’t all be wrong. I can’t afford to pay the cost for the Goldshield ones even though my chemist is getting them in and now we read that they won’t be available soon. Good luck to us all and lets keep fighting these big companies and Government over it.

August 26, 2008 at 8:26 pm
(320) Susan says:

In response to your comments, June, I had a very bad year, health-wise, last year, which ended in major surgery, so all the adverse symptoms I have experienced this year, I put down to “recovering” from last year, and my op., and I thought I would just have to be patient with my body, until it healed itself. However, I have now discovered that the exhaustion, headaches, shortness of breath, heart palpitations (to name only a few of my symptoms)are nothing to do with last year’s events, and almost certainly the result of the change in formulation of Levothyroxine,as my pharmacist says that Glaxo Smith Kline changed four out of the five excipients (binders and fillers) in the drug, and these appear to be what are causing the horrid side-effects. As I was on a low dose, my doctor has now taken me off the drug completely for a fortnight, as of yesterday,and I have not had any sign of a headache or the other ghastly chest pain, etc., even at this early stage. I am so relieved to discover that there is a reason for me feeling only half-alive, but this should never have happened in the first place. Thank God I saw “Close Up” on 15 August, or I would still be a physical wreck. Thanks for all your helpful blogs and information,everyone: They’ve given me hope!

August 26, 2008 at 10:15 pm
(321) Claire says:

Have you thought it might be the change in the manufacturing process to a Recombinant or GE one?

If your symptoms are really bad would you consider a complete blood test and get the Red, White Blood cell, iron, liver function, IgE,IgA,IgG counts, they might show you are fighting a foreign protien as a GE one which is causing your immune system to react badly.

August 27, 2008 at 3:13 am
(322) Louise says:

I have been reading this forum for about 3 weeks now and it has been interesting reading everyone’s posts. I have learned a lot, including the fact that I have not been imagining the symptoms that have arisen since the change in formulation. I have been taking thyroid meds for alsmost 30 years now with absolutely no problems. However, in the last year I have been experiencing stiffness after sitting or bed – so bad that I can hardly walk, itchy eyes and lots of other stuff that mean that I have pretty much lost my mojo. Usually am a positive high- achieving individual, but have become antisocial, grumpy and vague. Went to my doc today and she said to go on Goldshield (like it was going to be that easy). Pharmacist said that there is none avail and it would be min 8 – 9 weeks til there was a supply. Thanks to Tasha’s I have been able to obtain a month’s supply. Hopefully some more will come into the country before the predicted 9 weeks. I will start taking it tomorrow and am hoping I get the results I have read of here. Thanks all.

August 27, 2008 at 3:47 am
(323) Denise says:

Interesting isn’t it, all the symptoms people are experiencing are virtually identical and it wasn’t until the media picked up on it that people (myself included) started coming forward with similar stories, so psychosomatic it is definitely not (even Vets will acknowledge that).

Anyone from Pharmac out there… give us a break and see common sense on this will you please. So many people are suffering on a daily basis that surely you can see the hurt involved. You can’t? Then pick up the phone and talk to CARM… no not next week, or next month, do it now!!

August 27, 2008 at 4:20 am
(324) margaret, Auckland says:

Yesterday I had a full blood test done. Today the doctors nurse rings me and asks do I have a cold as my white cells are down slightly. Also have I been watching what I eat as my Cholestral is 7.5% something I have never had a problem with. I said to her dont you realise what is going on and why I requested these bloods to be done. She then said nothing we can do but perhaps your daughter In England can get you some Goldshield. I cant believe how these medical people are burying their heads in the sand and will not listen to us. Are we really becoming like a third world country dishing out third world drugs. Thank good my chemist is doing his very best to help me.

August 27, 2008 at 5:04 am
(325) Susan says:

Hi Margaret, and everyone else out there who is suffering from the ill effects of the newly/differently formulated Levothyroxine: I am intrigued to read about your cholesterol, Margaret, as mine is up too (never has been until this year, and now creeping up), and my GP has been growling at me about that. Seems that it is nothing I am doing, (as I am so careful about my diet etc.)but ANOTHER side effect of the drug. Also, I have NEVER had high blood pressure – until this year it has always been 120 over 70, and it has crept up, like my cholesterol, and is now 150 over 90. I believe that this is one of the ten or eleven side effects of Levothyroxine I have experienced this year, as mentioned earlier.

August 27, 2008 at 5:12 am
(326) Louise says:

Susan, my BP reading at doc today was up too, 160/92 when it is usu. 120/80 and has been always something I was proud to say was good. Cholesterol has always been something I have to watch (hereditary am afraid) but dread to think what it is now. I will be monitoring these with new meds to see if they change.

August 27, 2008 at 6:22 am
(327) Angela says:

My mum was discharged from hospital today after 4 and a half months in hospital. I never thought she would ever be able to return to her own home after being so seriously ill. She is 85% back to normal, still is weak and has eye sight problems but is feeling so much better and so happy to be home.

August 27, 2008 at 6:25 am
(328) Angela again says:

From the trade me thread
“Until such time as the trademark dispute is settled between Goldshield and Glaxo Smith Klein, the WILL BE NO MORE GShield available! If some Pharmacies have stocks – great… but once it’s gone, it’s GONE. Allan”
and
“A final, final word…
It is unfortunate that everyone has latched on to the “Goldshield” name, thinking it’s the only true substitute for your needs, when the word was really only used to differentiate between the two “Eltroxins”. There ARE other suitable brands available – not manufactured in a “Third-World” country as GSK’s is now – and we have a plane load of it arriving this week. The situation may not suit everyone – but we have worked night and day to accommodate the best solution for thyroid patients. Allan.”

August 27, 2008 at 7:06 am
(329) Louise (AK) says:

Has anyone had any experience of recurring urinary tract infections since the new formulation? My mother has had repeated bouts over the last year and I wondered if this could be related to the change in drugs. She has been taking thyroid drugs for 35 years-odd.

August 27, 2008 at 2:55 pm
(330) Pauline says:

I have had problems with my lungs since the beginning of the year. I apparently have something growing at the bottom of my lungs!! I find it difficult breathing at times. Is there anyone out there with respiratary problems? It has come on since my change over to Eltroxin!! Problem is now what permanent damage has been done?? This is affecting us all on this forum. Really look at yourself and say what has done to me that could be permanent?
Another point about this is what about old people in homes who have thyroid probs and are on Eltroxin. Unless they are reading this, watch the news on TV3 or saw “Closeup” on TV1, or live in Southland they are not going to be aware of what is happening, especially if their doctor’s anything like the majority we’ve seen. It is very scary. Someone has to be held account for all this, if anyone dies, it could be construded as murder, afterall the health ministry must be aware by now what is happening……

August 27, 2008 at 3:56 pm
(331) Susan says:

Hi Pauline and all of you sufferers out there: Yes, Pauline, one of my many symptoms has been shortness of breath – three or four episodes a day, even though I have never been asthmatic, or prone to bronchitis,or anything.I was also waking up very stiff every morning, hardly able to walk downstairs, (but don’t have any form of arthritis anywhere) and had put it down to “old age” creeping up – at 55 years of age!

August 27, 2008 at 4:30 pm
(332) Kerry says:

Susan, the morning stiffness for me has been extreme too – hardly able to walk to the bathroom when I get up.I was actually relieved, although very cross at the same time, to find the cause is the GSK Eltroxin.I am only 48 and have spent the last months very concerned at being an old body so early in life and wondering how I will cope with real old age.
Thankfully I changed to Almus a week ago and l am just waiting for it to kick in!

August 27, 2008 at 4:52 pm
(333) margaret, Auckland says:

Hi Susan, was great to get a reply with someone else who has noticed the chlost. levels up. I have never had the problem before, have always watched what I ate and couldnt believe that I am queried re the milk I drink and if I remove fat from chicken etc. Treated by a doctors nurse like I am some sort of idiot mind you as time is going by we might all end up this way if something isnt done soon. I have not had my BP done for ages so I wouldnt be surprised if that also isnt up.I think for sure with this amount of talk going on and the complaints that have been forwarded someone will step in and see us all right,we must think this way otherwise we will all get sicker just thinking about it and wondering what if…….Guess its also good to talk about it like this forum is doing.

August 27, 2008 at 5:29 pm
(334) Marina says:

I’m getting a bit confused – someone mentioned that Glaxo’s Eltroxin is now produced in a Third World country and someone else said that Glaxo has moved manufacture of Eltroxin from Canada to Germany. Is Germany considered a Third World country or is Glaxo producing its Eltroxin somewhere else?

August 27, 2008 at 5:43 pm
(335) jilly says:

Pauline, I couldn’t agree with you more. Sadly I am aware of 2 people who have passed over and we believe it is due to side effects of these pills. Although the medical system will surely find some other cause, but tis odd, their illness and decline only started after taking these pills, and what they were suffering from belongs in our list of side effects.

I am also aware of people hospitalised, and many having un-needed expensive tests, and others that have had to quit their jobs or radically reduce their hours. Then there are the multitude who have been prescibed anti-depressants and other drugs in an attempt to fix the symptoms rather than treat the cause.

I paid $270 to see an Endo, only to be told I am hitting 50 so probably menopausal, and I have bad sleeping habits, eat wrong, and of course I am a smoker and like to have a wine. Obviously it is my lifestyle.

Funny she didn’t want to hear that my lifestyle, apart from sleeping all day and broken 2 hourly sleep at night, has not changed in over 4 years.

I emailed her last week, told her that within 2 days of stopping Eltroxin I felt great, and that since being on WTE I feel even better than I have in 35 years. Odd…no response from her yet….

Yes, we do need to get the message out there, and if you look at our site, you will see we are working on all kinds of methods. Did you hear Alan Campbell on the radio on Sunday? It is also often the subject of radio talkback.

Our site is http://keenkiwi.orconhosting.net.nz/links.html

August 27, 2008 at 8:07 pm
(336) Robyn says:

Angela, i hear you loud and clear!!!! and i so agree….

still waiting to find out if i can get T4/T3 synthetic combo in to nz to suit my needs and am aware many many options and solutions out there, from what i read on the english thyroid website i can’t take the majority of the drugs because of the fillers…

the problem i feel with nz is to do with limited funding and affordability and at many times i have been so aware of funding seriously misused….does not always make the media what goes on behind the scenes…

dr’s whom do care, stand up and speak out about certain issues get brow beaten…honest…and sometimes also loose their rights in practise…

too much bullying and repression for me, its been heart breaking, i was raised in nz as a healthy happy individual whom was taught if i wished for health and happiness wealth would follow…

no-one should ever make money out of keeping people sick…

was in the healthcare industry on and off throughout my career…

what actually cost me my thyroid tissue was pharmaceutical products, the medical profession and medical errors and i cannot believe in 10 years science has not evolved and things aren’t done different? when we live in a fast mnoving technical world???

when i stood up and spoke out the specialists and my drs all came down on me like a clump of bricks, its me i was the problem. so imagine being a dr and speaking out, have known of some and they too have been persecuted. then there are those that just go to work to make a living and never stop to think outside the square box. pills for symptoms, or its a virus or your stressed or depressed…gets to the point that we all start believing them….

for all of you out there….chemistry alters physiology which in turn alters psycology.

meaning if you are getting the wrong ingredients into you, if you aren’t absorbing nutrients, it will make you sick, very sick and parts of you will start to breakdown..then will follow depression, whom wouldn’t get depressed????!!!!

last year i ended up in the alfred emergency dept in melbourne, heart rate 170 – 215, normal rate is around 80… running for 18 hours, irregular rythem, doctors intravenously fed me with drugs even though i told them nothing would work and i was injected with beta blockers, nothing could fix it. then they learned i was low in potassium and magnesium so this was feed into me through veins and in water soluable pill form, few hours later everything returned to perfectly normal situation like nothing had happened…

it was established my thyroid meds intake too high, back here it got established i was actually allergic to the thyroid meds…

many people do not understand about thyroids how complex the situation is and how it affects you when the thyroid throws out. so to me this media coverage might teach many…

there are also many many people out there whom aren’t even aware that they have a thyroid problem as dr’s don’t always do the right full tests and blood parameters tests vary and change between countries….

i feel for those people cos they go on to a worse journey…i never had a thryoid problem, the medical profession kindly created it for me…great!!! has made me a wise accomplished and healthy person whom keeps striving for the best health a person can get…

my speel for the day and thank you to those whom are out there trying to make it better for others…you are doing great!!!!

good on all of you for speaking out and making others aware, its when people get collective and strong that is when change can occur…

August 28, 2008 at 3:37 am
(337) Wendy says:

I have been taking thyroxine for many years and not ever had a problem until I made the connection that perhaps it was the tablets that I am taking that was causiing my itchy, watery sore eyes and pore vision, dizziness, depression, and spacy feeling for several hours after taking the tablet. I did a trial to see if I stopped taking my tablet one day to see if my systems the next day woud improve, and bingo, yes they did, so I then took my tablet in the afternoon to see if the systems would return in the evening and aposed to taking it in the morning – my trials proved positive.

I am going to search for an alternative, because I cannot live with taking this drug, it is totally unstatisfactory.

August 28, 2008 at 3:55 am
(338) Denise says:

Does the Almus levothyroxine contain exactly the same ingredients as the Goldshield brand?

I was only able to get one 28 tablet box of Goldshield and can’t get any more from my pharmacy here in Christchurch. The alternative brand that Allan Campbell is trying to get, is it Almus levothyroxine?

The reason I ask is that after only 1 day on Goldshield I feel so much better – I just can’t believe it. Amazing. So it’s a cruel blow not to be able to get any more Goldshield, however if the ingredients are the same as the Almus levothyroxine then I can breathe a sigh of relief.

August 28, 2008 at 5:24 am
(339) Angela says:

Denise
Alan would be able to answer your question. he has given us this email if we have any questions
chemistry.stain@gmail.com

August 28, 2008 at 5:45 am
(340) Denise says:

Thanks Angela, much appreciated :-)

August 28, 2008 at 5:58 am
(341) Shelley says:

I have a friend in NZ who is suffering from all the side effects that most of you are. I live in Australia and we have Otroxine here,and there has never been a problem. I can’t believe the NZ Govt is allowing people to die because it appears that NZ only supplies 3rd world drugs to their patients! Shame on you! Yes that’s right I know many people who work for pharma companies here and they all say that the drugs supplied to NZ are the same as the drugs they supply to 3rd world countries!

August 28, 2008 at 11:34 am
(342) Henri says:

Hi there everyone. Sorry I was awfully busy with work since I took over the medical direction at ERFA Canada. If you need information concerning Desiccated Thyroid (How to get? who should I contact? ect) I am the right person since our company actually manufactures the product and distributes it around the world. You can also visit our new website http://WWW.Thyroid.ME cheers from Canada :) Henri

August 28, 2008 at 1:19 pm
(343) Cathy says:

I’ve read all this with a lot of interest as my daughter’s boyfriend (in Switzerland) has Hashimoto’s as a result of Chernobyl. In researching different medications, I ran across this:

http://www.thyromine.com/ingredients.php

and thought I might share it as another natural alternative. The have a number for international ordering.

August 28, 2008 at 4:08 pm
(344) Henri says:

hmmm interesting product.As a Thyroid expert medication I would NOT recommand it though for a simple reason…if you check there website you will find that the product is NOT approved by FDA (“Statements made by Thyromine have not been evaluated by the food and drug administration. The FDA Dose not evaluate or test herbs. These products are not intended to diagnose, treat, cure or prevent any illness or disease.”)

Therefore how would someone exactly know what T4 level to take? What are the interaction with other medication you take? etc… lots of unexplain questions! There is good natural FDA and Canadian health approved product out there. If it was me…I woudn’t jeopardize my health with this product. Only go with approved natural product!

August 28, 2008 at 6:47 pm
(345) Zoe says:

I have read the comments being added to this column for some time and feel it is time to add my voice. I have been on Thyroxine since 2002 and was so pleased that I had no reaction to the drug I was going to be on for the rest of my life! Unfortunately as we all know things change. I began on the new formulation in October last year. Throughout this year I been having problems with anxiety, nausea, my hair started falling out, I put on weight. Then the pain started, intially in one elbow, then both arms and I had trouble getting down my stairs due to knee pain.I couldn’t sleep and my left arm became numb. I found holding a cup difficult. The revelation in June was wonderful..the answer to it all!
My Doctor was more than happy to prescribe new medication and in July I went on Whole Thyroid which I obtained from Pharaceutical Compounding in Auckland. I actually stopped taking Eltroxin as soon as I knew there was an alternative coming. Two days off it and I felt better! I no longer have any of the earlier side effects and my last week blood test results were fine.I have contacted Pharmaceutical Compounding this morning and they have plenty Whole Thyroid in stock. Oh yes, my 3 month supply plus courier cost $50.

August 28, 2008 at 7:43 pm
(346) tasha says:

so i’m now wondering that if there is to be no goldshield from now until further notice, would it be better to stay with the devil you know instead of chopping and changing from one to the other. any opinions gratefully welcomed

August 28, 2008 at 8:04 pm
(347) jilly says:

Tasha, Alan says Almus is fine as an alternative, and there are also others available. If you read the posts above you will see his comments that have been copied from the other site, as well as his email if you want the names of alternatives.

August 28, 2008 at 8:22 pm
(348) Sonia says:

Hi Zoe – I’m interested in your experience as I had the same weird symptoms. Both elbows were very sore and painful during the night, nausea, sore eyes, as well as all the other associated problems with the new Eltroxin medication.

Just a couple of questions please:
What is the name of the ‘Whole Thyroid’ that Pharmaceutical Compounding sells please?

Also, what dosage (mcg) are the tablets as I’m on 200 mcg Thyroxine\Levothyroxine (2 x 100) per day. I currently pay $160 every 3 months for 180 tablets + doctor.

Is a prescription required for the whole Thyroid?

August 28, 2008 at 8:34 pm
(349) Robyn says:

yay Zoe!!!!

August 28, 2008 at 8:36 pm
(350) Dawne says:

I have just seen on the other site that a reporter was told that Pharmac won’t back down. This from a department of a govt that claims to be the party for the people. If this is so why don’t they make a public statement along wth medsafe as a reply from the latter to me said they were in negotiations for a substitute. The govt spokesman has stated this week that no company was interested because we were no bigger than a large Asian City. Is that going to be their final say over this? Also I would be interested to hear if someone knowledgable with importing could explain why importers here are unable to supply lesser amounts of the good medication if we are prepared to pay for it. I was lucky to be given Almus as a bridge until the Goldshield became available. I am so impressed with it I would really like to stay on it forevever. I have never felt so well or physically stable in the 14 years since I had a total removal op. It is a real worry not to be able to have the choice that suits you best.
It has been a shock to find that in our democratic country, when so many people have spoken out, that no-one will listen.

August 28, 2008 at 8:39 pm
(351) Zoe says:

Hi Sonia, Yes a prescription is needed for the Whole Thyroid (which is the name used). When I phoned Pharmaceutical Compounding about it the Doctor there emailed all the prescribing info needed for it to me, which is what I took to my Doctor.They have their own website if you want their contact details

August 28, 2008 at 8:39 pm
(352) Susan says:

Hi again, Everyone: I have been following your comments and advice,with great interest. My GP took me off Levothryroxine last Monday, so I have had four days without it, and I feel like Spring has come to my body, after a long, dark Winter! My awful symptoms have all but disappeared (heart palpitations, stiff joints, itchy eyes, chest pain, shortness of breath, headaches, feeling spaced out, insomnia, etc.)and I am now convinced that the Glaxo Smith Kline produced version of Levothyroxine was responsible for my rapid decline. I am to have blood tests in a fortnight’s time, and these will reveal how my body is coping with the absence of the drug, and will determine whether I need to go onto a different brand. I will be very keen to see if my raised cholesterol levels, and also my blood pressure, return to what they always were, until this year. Thanks for taking the time to share your experiences and solutions. It is unbelievable that so many of us have been suffering so many horrid side effects!

August 28, 2008 at 8:55 pm
(353) Robyn says:

Shelly,

i agree with you, i too know people in pharmaceutical companies in oz whom expressed grave concerns for nz’ers when they learned generic versions were being introduced here and they listed the reasons why they were concerned….

those that work in those arenas that are making these decisions, continue to look at health policies as business, budgets and p&l’s, do they ever really get it? or comprehend it? until it affects themselves or someone really close to them…

August 29, 2008 at 6:03 am
(354) Angela says:

September 4th we are promised the answer to the big question!!!!!!!!!!!!!!!!! wonder how honest it will be??????

Sue Kedgley’s question in parliament to David Cunliffe below

7825 (2008).
Sue Kedgley to the Minister of Health (27 Aug 2008): Where is the drug Eltroxin, used to treat hypothyroidism, produced; and is it produced using processes that involve genetic engineering?

Hon David Cunliffe (Minister of Health) replied: Reply due: 04 Sep 2008

August 29, 2008 at 6:08 am
(355) Angela says:

The answer to the BIG question is due 4th September.

The reply to Sue Kedgleys question in parliament below……

7825 (2008).
Sue Kedgley to the Minister of Health (27 Aug 2008): Where is the drug Eltroxin, used to treat hypothyroidism, produced; and is it produced using processes that involve genetic engineering?

Hon David Cunliffe (Minister of Health) replied: Reply due: 04 Sep 2008

August 29, 2008 at 11:27 pm
(356) roha says:

On Sep 2 Cunliffe’s listed to reply to a question form Jackie Blue (no. 7718) about the trials run on the new formulation. He’s already told her in reply to an earlier question, no 7702, that it contains no monosodium glutamate or wheat-based material in the excipients but hasn’t specified the source of the active ingredient – the levothyroxine itself!

August 30, 2008 at 2:10 am
(357) Kelly says:

Any other Pharma Company would immediately recall a drug that would cause so many serious side effects, no not Glaxo! How much money do you really need, and how many more people need to die before you show some type of empathy!?????

August 30, 2008 at 2:56 am
(358) roha says:

Is there a glimmer of light at the end of the tunnel? Have just read Cunliffe’s response to yet another Jackie Blue question in Parliament (no 7586 on 19/08/08))and dare hope!!

August 30, 2008 at 12:29 pm
(359) Mary Shomon / Thyroid Guide says:
August 30, 2008 at 4:54 pm
(360) margarete says:

hello all:)
i cannot believe that i only heard about all of this at ‘nightline’last thursday evening…the news and the program on ‘close up’ i missed…
i have been struggling with headaches,insomnia, nightsweats, ‘bladderinfection’ that would not go away – never had that before and tests revieled nothing – so just had to live with the ‘discomfort’(just retrain your bladder the doc told me:)…depression got so bad, that i could barely get up and muscle aches have prevented me from even walking my dogs properly…my periods were irregular and i got told i must be premenopausal…i tried to believe that and thought old age caught up with me – i’m 49 feeling completely run down. and all the time i tried to find the cause…
oh, did i mention that i put on 10kg’s on a balanced but controlled diet of around 1500cal? usually even less!
and my list of ‘discomforts’ goes on…
i stopped taking levothyroxin on friday and will see my gp on monday.
i so hope he will not give me any trouble going on whole thyroid, because by now i believe, i’m not converting t4 into t3.
what a mess!
and almost a relief to find out what caused all this. i wasted a whole year feeling like crap! unbelievable.
sorry, that had to come out:)
to all of you: be strong and let’s fight this!

August 30, 2008 at 7:32 pm
(361) Dawne says:

Here’s a thought. If all prescriptions have to go through Pharmac they must have the true figures of how many of us have changed our medication.

August 30, 2008 at 9:46 pm
(362) roha says:

Yes Dawne, but not of those who have to grimly carry on with Eltroxin because they simply cannot afford – were any still available – to pay for alternatives.

August 31, 2008 at 5:42 am
(363) Angela says:

couldnt get the link to work so heres the whole thing

30 Aug 2008 Waikato Times

Optional thyroid drug a hot item

Patient demand has overwhelmed pharmacies supplying an alternative to the Government-funded thyroid drug.

Hundreds of patients are on pharmacy waiting lists as pressure mounts to secure dwindling supplies of a thyroid drug produced by Goldshield.

The company importing the product stopped taking orders last week.

Patients using the Government-funded thyroid drug, GlaxoSmithKline’s Eltroxin, have complained of side-effects, prompting hundreds to seek alternatives.

Allan Campbell, of Temuka Pharmacy, said he had been overwhelmed with Goldshield scripts and had just three one-month packs left yesterday. About 200 scripts were waiting to be filled. ‘‘That’ll be 250 by the end of the day. People are coming out in their droves. We are processing 100 to 150 calls a day for an alternative and we are getting faxed to us 50 to 70 prescriptions a day from all over the country.’’

Despite this, New Zealand company Health Support yesterday confirmed it had stopped taking orders for imported Goldshield late last week.

Product manager Sue Parker said the company could not obtain enough supplies in Britain to satisfy New Zealand demand, which had seen 1000 packs snapped up in one day.

‘‘It started off as a snowball and ended up as an avalanche. We couldn’t get the stock to cope.’’
Health Support was also concerned over a potential conflict between its product, Goldshield Eltroxin, and GlaxoSmithKline’s drug of the same name.

‘‘They (GlaxoSmithKline) haven’t actually taken objection but they could.’’

Campbell was now waiting on another drug company, Abbott Laboratories, to come to the rescue with a second alternative thyroid drug.

Abbott Laboratories has confirmed it is organising a shipment of Synthroid from Canada to New Zealand, which may be airfreighted for quicker delivery.

The company hopes to have the drug available in early September but has yet to determine the price.

Patients had resorted to paying for the alternative drugs after GlaxoSmithKline reformulated its product.

Patients said the new formulation had led to problems with balance and vision, and other side-effects.

Medsafe has since reviewed the new formulation and determined that it still meets quality, safety and bioequivalence criteria.

– Fairfax

August 31, 2008 at 1:58 pm
(364) Denise says:

So basically what Pharmac are saying is that we are back to the same hopeless position…. nothing has changed.

August 31, 2008 at 3:54 pm
(365) Undecided says:

I haven’t read all 355 comments but can someone please tell me about Eutroxsig or its equivalent Oroxine – why are we waiting for imports from US or UK when those exist acrss the Tasman?

August 31, 2008 at 6:09 pm
(366) kelly says:

Undecided
Eutroxsig is the generic form of Oroxine. It has been test in Australia and is exactly the same composition as Oroxine but is $2 cheaper. It is made by Sigma and is the main Thyroxine drug on the market in Australia. I know of a number of friends that are on it and have no problems.

September 1, 2008 at 10:16 pm
(367) margaret, Auckland says:

Interesting development for me. No change in the drugs but many of the symptoms I was complaining about are not so troublesome. What I have done is gone onto Vit. C. tablets for the last two or three weeks could this be making a change to the chemical imbalance in my body. Worth a shot perhaps…………

September 2, 2008 at 2:45 am
(368) Dawne says:

Watch for confirmation. It’s looking like we are getting an alternative!

September 2, 2008 at 3:37 am
(369) Denise says:

“Watch for confirmation. It’s looking like we are getting an alternative!”

Is this a Government funded alternative from Pharmac?

September 2, 2008 at 3:46 am
(370) roha says:

Where are you last 2 getting that oh-so-welcome news from?

September 2, 2008 at 5:10 am
(371) Kelly says:

An alternative…interesting! I wonder what drug they will dig up this time, it’s a little too late for some people!

September 2, 2008 at 5:31 pm
(372) David says:

Hi – I was diagnosed with non active thyroid when I was 9 years opld and have now been on treatment successfully using eltroxine for 58 years BUT that changed when Smith-Kline-Glaxo decided to alter their formulation. The reason for their change I have discovered was because the patent for the original formula has now run out and to protect their market they changed formula so they could again patent their product. No rationalisation of production just PR lies and multinational drug company protectionisim.
The result of the change has had a detrimental effect on my health, my motivation and ruined an overseas trip.
Like most others who have added comments I put on weight (12kgs), had skin reactions, headaches, indegestion, itchy dry eyes,plus other small but repititive changes such as metallic taste in my mouth when waking up.
I only became fully aware of the change when the last prescription I got in May had “LEVOTHYROXINE” on it. this was just as I was leaving for overseas so did not challenge the change.
During the trip I had major fluid retention problems, excessive tiredness, rashes eye-sight problems to name a few. Overall my time away was B—— awful and went to my very good GP on return.
I have now got some of the old Eltroxine formula and after a week being on them have returned to the world again.
My overall question is this. What right, has an arrogant drug company SK-Glaxo) plus Pharmac (whose staff receive bonuses for saving money), have to play Russian Roulette with our lives without notice, adequate warning and clear reason except linging their excessive profits, by changing a well proven, reliable and effective drug formulation.
We should start a boycott Smth-Kline-Glaxo products campaign to show our position clearly.

September 2, 2008 at 5:45 pm
(373) tasha says:

hi all, i wonder, does anyone else notice that their abdo area is sprouting hair, more than before,, and to the 2 angels who are saying there is going to be an alternative, is this for real and when???? wwill it be subsidised…..

September 2, 2008 at 6:45 pm
(374) Dawne says:

Apparently Pharmac are negotiating now for an alternative. Supposed to be announcing this month sometime. The information came from a spokesperson for Alan on the other site. Fingers crossed everybody.

September 3, 2008 at 12:54 am
(375) Angela says:

David have you contacted CARM this is still really important.
I feel pharmac should recall all the bad batch of tablets, not just make an alternative, some people are only just starting to take them, why make them go through what we already know are horrific side effects.

September 3, 2008 at 1:32 am
(376) Mylene says:

I have been taking Eltroxin for more than 10 years already, and about 2 months ago, I purchased a new bottle and it was from Germany. Ever since I took this new Eltroxin, I have been gaining weight and I had skin rashes on and off for the last 2 months. I never would have thought that this would be from the new Eltroxin. I have told my friend I don’t know what I am doing wrong with my diet because I just kept on gaining weight even if I don’t eat rice anymore…

September 3, 2008 at 1:40 am
(377) Dawne says:

Angela I agree. We still have to keep on getting the word out. It can’t stop here.

September 3, 2008 at 1:51 am
(378) Dawne says:

Angela I agree. We can’t stop now.

September 3, 2008 at 5:10 am
(379) Marina says:

Regarding recalling Glaxo’s Eltroxin: I have very recently spoken to 3 women who take Glaxo’s Eltroxin and are fine. One of them is even better on the new formulation than she was on the old formulation. So I reckon it is something that some people are sensitive to while others aren’t. It is very difficult to get the whole picture as those who don’t experience problems don’t tend to search the internet for ‘Eltroxin problems’.

Would be great if there was a fully funded alternative for those patients who don’t tolerate the Glaxo pills.

September 3, 2008 at 11:29 am
(380) jilly says:

Tasha

yep, the GSK eltroxin increased my hursuism… especially on my face. However, I am now on whole thyroid, have been for 21 days, and I think it is decreasing. If this continues, I will be in 7th heaven and never go back to a synthetic.

My theory is – synthetics work well overseas – because they have good selenium. For T4 to covert to t3, yu need selenium. Synthetics – are only T4.

New Zealand is well known for having low selenium in the soil – farmers add it to their stocks food. Therefore – those who choose a synthetic, might do well to take selenium pills ??

The whole thyroid pills I take – have T4 and T3, and it has been over 35 years since I felt so well. I do not see myself over returning to a synthetic.

They do suit other people – and that is great… but we need choice for our bodies.

September 3, 2008 at 7:42 pm
(381) Sharon C says:

Hi
I take Goldshield Eltroxin 250mcg (Goldshield have also changed packaging and name to Levothyroxine but say ingredient hasn’t changed)daily for the past 18 yrs but over the last year or so I have constantly gained weight, tierd, back pain, headaches, numbness in legs and hands and hair loss. Irish doctors must be the same I am sick of paying money going in complaining about how I’m feeling, and getting no answers. I also think I feel a bit better when I don’t take it. Stupid I know But I’m 28 have been taken medication for 18 years and have never really seen a dramatic change.

September 4, 2008 at 9:36 pm
(382) Dawne says:

Teresa/Canada.Hope you are still watching. Which brand are you using? I’m interested as we are about to start on one from there. The one coming here is from Abbotts.Not sure as yet what name it is.

September 4, 2008 at 10:18 pm
(383) tasha says:

hi everyone, thanks for your help jilly… god i have to wonder what else is going to go wrong, and men reckon women have got it easy ,hah!!!! anyway just wanted to say i got a reply from carm the other day and they say they have received over 700 complaints re thyroid meds and they hope to have an answer or alternative by 08/09/2008… here’s hoping

September 5, 2008 at 12:53 am
(384) Angela says:

Allan said an alternative thyroid drug will be available next week from Abbots. Its called synthyroid. we still have to pay for it but at least people will have a choice. newstalk zb broadcast two nights in a row and it seems there will be an article in Sunday Herald to follow. – you can listen to newstalk online (started 11pm last night)

September 5, 2008 at 3:05 am
(385) Ian S, says:

Newstalk ZB direct link…

http://www.newstalkzb.co.nz/thisweek/hourrecs/Thu,%20Sep%204%2023.00%20trn-newstalk-zb-akl.asf

Starts from 8 minutes, 45 seconds into the audio.

Allan Campbell (Temuka Pharmacist) is on air, and he also answers questions from people calling in.

September 5, 2008 at 3:13 am
(386) Ian S. says:

**Tip** The audio link loads much quicker if you Copy and Paste it directly into Media Player, rather than clicking on the link itself.

(Open Media Player, then click ‘File’, then click ‘Open URL’ then Paste in the link, then click ‘OK’)

September 5, 2008 at 12:31 pm
(387) Ms. Piper says:

For those of you looking to Synthroid to
really help you if it becomes available
in New Zealand, it may not be the answer
for you…and may continue to give you
problems and/ or create new ones.

I say this as someone who’s been totally
messed-up from this drug since it was
changed back in 1982….old version was
good for me, but new versions have been
HORRIBLE. Maybe it’ll help someone out
there, but I wouldn’t necessarily count
on it.

And yes, they played around with Synthroid’s
fillers (among other things) when it was
changed in the 1980s. So, just a warning
to all of you out there….be cautious
about Synthroid (I posted a more detailed
message about my experience with it earlier
on in this discussion.) Ms. Piper

September 5, 2008 at 5:11 pm
(388) carol says:

I have been on the
Glaxo Smith Klein levothyroxine since the beginning of 2008 and have experienced some of the side effects reported by other users. I stopped taking the medication after seeing the item on ‘Close Up’on the 15th of August regarding the many complaints about the drug.I was lucky enough to get a months supply of the Goldshield brand and have been on it for for 9 days. So far ,even though being off the GSK levothyroxine for 3 weeks and on Goldshield for 9 days I still have most of the side effects.
I wonder how long other people have found it takes before they feel some improvement. The symptoms I am experiencing are sore aching eyes, Headaches [migraines sometimes]aching neck and occasional light headedness.I am 62 and until this year had never experienced a migraine in my life.I never had any side effects from the original thyroxine and was on it for 6 years.

September 5, 2008 at 5:48 pm
(389) Angela says:

Carol
my last post didnt seem to work
there are other options see this website.

http://keenkiwi.orconhosting.net.nz/index.html

some people have reported feeling better the first day, it took my mum five weeks. the fact you have been without it for 3 weeks may have made your body a bit hypo again and may take time, but the bottom line is you dont have to feel sick there are other options (just have to pay for it)

September 5, 2008 at 6:50 pm
(390) Dawne says:

Just heard from someone back from a holiday in Canada. She ran out of the NZ Glaxo pill while there and went on the Canadian one for 2 weeks. Felt great. Came home, back on Glaxo and became ill again. Heard about what has been going on here at home when she arrived back so proof yet again. Also I am one of those being tested for affects on the blood from the pills. I wonder how many others have been found to have raised white blood count and liver enzymes while on the glaxo pill. Claire is doing the right thing testing the patients as nothing coming back from the pill tests.

September 5, 2008 at 6:51 pm
(391) Pauline says:

Hi Carol;
We appear to be travelling along identical lines. Mind you I started Goldshield on an empty tank (or so my GP said) as I had acute hyperthyrodism (or whatever). Unlike most people putting on weight I have been probably taking it off, since I have almost thrown up at the thought of eating anything (just wonder if anyone else has felt like that). My husband has almost had to force feed me!! I have also felt so tired I could sleep all night and all day and still feel tired when I woke up. My voice changed to a croak. However I think the Goldshield is actually working I no longer feel as if I am in free fall, but at last after about 3 weeks am pulling out of it. I think the bottom line is it does all depend on how long you were on the Eltroxin (crap drug) before you went over to the good stuff. As Allan told me with some people it can have an almost immediate effect whereas others it can take up to 3 months!! So keep at it you’ll come right!!

September 5, 2008 at 6:55 pm
(392) Dawne says:

Pauline. I was just like you. Couldn’t face food and have been losing weight continually. Lovely to enjoy food again. Also had the voice go low and croaky. That took 3 weeks to come right after starting the new meds.

September 5, 2008 at 8:00 pm
(393) Angela says:

dawne and pauline
my mum also lost heaps of weight, she couldnt face food, went off tea coffee etc, other times food seemed to get stuck. she is still very croaky with a quiet voice. in saying that she feels so much better, and she is eating well now.

September 5, 2008 at 8:55 pm
(394) Dawne says:

Thanks for that Angela. I couldn’t understand why my weight went down while everyone else said weight gain was a symptom. A relief to hear of others. Still having trouble putting any on but early days yet.

September 6, 2008 at 4:09 am
(395) Kez says:

I’ve been on Goldshield for one week. So, does anyone out there know how long it takes to work? Feeling better with some other side effects of levothyroxine…does Goldshield work for everyone?

September 6, 2008 at 4:48 am
(396) Angela says:

Kez
have a look at the trademe thread go to:
http://www.trademe.co.nz
then community, message board, general, then thyroid people.

September 6, 2008 at 3:43 pm
(397) undecided says:

Does anyone know if the levothyroxine in Eltroxin is made by GSK or is it a generic?
is the only thing that changed with the new Eltroxin the excipients or did they change the source of the levothyroxine too?

September 6, 2008 at 8:44 pm
(398) Pauline says:

Hi Kez..
Have a look back at the last bit of (382).

September 6, 2008 at 9:11 pm
(399) Kezia Field says:

Hi Pauline…thank you. Question again, is it worth my while taking a natural thyroid medication?

September 6, 2008 at 11:21 pm
(400) Angela says:

kezia have you had a look at
http://www.trademe.co.nz community, general, thyroid people
there is a lot of information from people who have tried both synthetic and natural
also the thyroid website has lots of links and a forum to ask questions that will be answered from people who have experienced a natural thyroid med.
http://keenkiwi.orconhosting.net.nz/index.html
join the rest of us and email
pat jones her email is on the keen kiwi site

September 7, 2008 at 12:44 pm
(401) Jopalis says:

I have had these symptoms but don’t take that brand. Tingling, pulsatile tinnitus, sweats, etc. etc.

September 7, 2008 at 5:27 pm
(402) Elaine says:

I too have felt unwell all year wondering what on earth was wrong with me until I saw the Close Up programme when hearing other peoples side effects everything fell into place.I started taking Levothyroxine about Jan 2008 and have suffered with chronic tiredness, difficulty breathing and wheezing,dry mouth and metallic taste,pain, tingling and burning in feet and difficulty walking depression and aches and pains.I stopped taking Levothyroxine about three weeks ago and within three days started to feel better, but after a while felt the effects of hypothyroidism.I started taking Whole Thyroid three days ago and waiting for an improvement.I have always been a busy active person and I just want to feel well again and resume a normal life.I am 56 and have felt about 86.

September 7, 2008 at 5:33 pm
(403) Dawne says:

Hi Jopalis. I have found that if I get excessive sweating I know I’m getting too much thyroxine.

September 8, 2008 at 2:54 am
(404) margaret, Auckland says:

Saw an ENT Specialist on Friday about a problem unrelated to the thyroid. Couldnt believe my luck when he started straight in on my blood tests saying surely my Doctor could see in the last few months things were going wrong for me. He said I definetly are now Hypothyroidism and unlucky for me he has had to increase my meds to 150 every second day. He called another specialt in to see me and both said they are seeing at least two patients a day with side effects. He said he would be writing to the appropiate people.
My Doctors nurse rang me again today to see if I was unwell did I have a virus as the white cells are down again, I again said you people are not listening so until they do nothing seems to be happening for us. I dont want to take more of these meds but what can I do in the mean time. He also advised me to go to the health shop and go onto thyroid support which I have done if this is of any help to people Worth a try I felt. Hoping that we will know something soon…………….

September 8, 2008 at 5:04 am
(405) Roha says:

Sept 6 and 8 were the dates weren’t they by which Cunliffe was to reply to the questions from Jackie Blue and Sue Kedgley. Has anyone heard what responses he came up with?

September 8, 2008 at 5:07 am
(406) Angela says:

Roha
i got a reply from Sue today, she said David Cunliffe said – the tablets were made in germany and they contained no GE products.

September 8, 2008 at 5:15 am
(407) Angela says:

Margaret have you left any comments on either the trade me thread or the thyroid forum
http://kiwithyroid.19.forumer.com/index.php?sid=fd9fd0d612fb1ae56380894fdb706624
we have a great support group and they would like to hear from you. it is good to know that you have a someone from the medical field who was supportive and listened. most of us are still getting fobbed off by doctors.

September 8, 2008 at 2:59 pm
(408) margaret, Auckland says:

Hi Angela, yes it was great to meet someone who was listening to me and is prepared to help thyroid sufferers.He gave me support and even though he is unable to prescribe any thing new at this stage I at least felt he was onto it. Will certainly look at this forum you have sent thru for me to look at. Marg.

September 8, 2008 at 4:39 pm
(409) Angela says:

Margaret
you can find us all at trademe.co.nz
community, general, thyoid people (it is a typo) good reading and also some support groups being formed.

September 9, 2008 at 6:31 am
(410) Cathy says:

Hi to Pauline. I live in the Manawatu, and cant believe that your GP has not heard of others with all the symptoms mentioned by others. I had Thyroid cancer last year and had my thyroid total taken out, and until I heard about everyone elses symptoms just thought it was things I had to put up with after operation. I am just about happy to travel overseas to bring back Goldshield brand

September 9, 2008 at 8:15 am
(411) Marina says:

As far as I know (and I had rung Glaxo NZ not long after they introduced the new formulation) the source of the levothyroxine sodium is the same as before the changeover. I also have talked to several manufacturers of thyroid medication and a couple of times I was put through to someone who knew how these tablets are made. There is less than a handful of manufacturers of the actual hormone worldwide and the different pharmaceutical companies buy that hormone and make the tablets. While I don’t remember the details of the different stages of production there is quite a lot to it. If the process is faulty at some stage the hormon surely can get damaged (my opinion).

September 9, 2008 at 4:14 pm
(412) Pauline says:

Hi Cathy..
I wonder how many others there are in this area are not aware of this forum and also Doctors are not aware of the seriousness of a lack of Thyroid!! Send us an e-mail sometime and possibly we can get together, like all that South Is crowd!!

September 9, 2008 at 5:08 pm
(413) Cathy says:

Pauline, I am off to my GP this arvo. Armed with a heap of questions I want answered. Havnt got your email but mine is : hall_cathy@hotmail.com. Email me so I can contact you. Cheers

September 9, 2008 at 5:54 pm
(414) Janice says:

I have been on thyroxine for over 25 years and have had no real problems until now– apart from the awful fact that it takes the calcium out of bones and nobody had bothered to tell me. Over the last few months I have been feeling really yuk and have found an excuse for every symptom, i.e. wet weather causing aches and pains, heavy winter clothes cause skin itching, change of shampoo, ditto, confusion – onset of Alzheimer disease! Loss of voice, winter throat etc, etc.
I am sure that the filler used is toxic to some people and that is what is causing the problems. Someone said that selenium helped so I am trying that, I also got the Thyroid Support (Nature’s Sunshine) from the health food shop, so I will let you know what results. What do you do when the pills you are taking are killing you, and if you don’t take them you will die? Cathy I live in the Manawatu as well, can I contact you?

September 9, 2008 at 7:09 pm
(415) jilly says:

Anyone in Christchurch – we are meeting up for a coffee at 2pm tomorrow (Thursday 10th) at Eastgate by Muffin break for a coffee and a chat. We are going to have regular meetings, this being the first. (Venue and time yet to be decided for the future) One of the reasons is support for each other, but also to set up National Thyroid Organisation

You can’t miss me – I’m 170cm tall and have long, ginger hair – so come and say Hello if you can.

September 9, 2008 at 7:24 pm
(416) jilly says:

Janice, you are suffering the classic symptoms of an adverse reaction to the new formula. You need to see your Doctor and ask for a change, either to Synthroid (available thru your chemist, a huge supply arrived this week from Abbots Laboratory) or Natural Whole Thyroid which available from Pharmaceutical Compounding in Auckland.

This has become an election issue and was on TV1 news yesterday.

There is a lot of support for you on the trademe site, alot of people from Auckland are on that, and have organised a coffee meeting tomorro at 3pm.

http://www.trademe.co.nz/Community/MessageBoard/Messages.aspx?id=29521941&topic=5&L=1&C=1

Also we have our thyroid site where you can contact others in you area.

http://keenkiwi.orconhosting.net.nz/index.html

September 9, 2008 at 8:08 pm
(417) tasha says:

wellll!! I went to see my doc today thinking yeah it’s all good, cause i can wake up @ 0630 and manage to get up without going back to land of nod, plus i have energy and an unhealthy desire to exercise still on the same medication haven’t changed to goldshield or almus ggggggrrrrrrrrrrrr……..hhhhmmmm my tsh was sitting at a lovely 6.0 I give up….. now i have to take all up eleven pills a week….. ok thats my bleat for the week probably doesnt help that my youngest has chickenpox and nags me everyday to let her go to kindy….

September 9, 2008 at 10:52 pm
(418) Roha says:

2.45 p.m. Wednesday and have just heard a live parliamentary broadcast where Jim Anderton (for Cunliffe) told Sue Kedgley there will be a MOH/Medsafe announcement at noon tomorrow as a result of discussions with 2 drug companies – implied there will be a subsidised alternative to GSK Eltroxin available within “a matter of weeks”. He fudged the supplementary ?’s on why it had taken so long to acknowledge and resolve the problem but Hey!!!!

September 9, 2008 at 11:36 pm
(419) Maaria says:

Is there anyone from Germany on this thread, that is having problems with Eltroxin

September 9, 2008 at 11:40 pm
(420) Maria says:

Would love to know what other countries you are all from. Is this problem just New Zealand?

September 10, 2008 at 2:32 am
(421) Dawne says:

Has anyone any suggestions how we can let the rest of the countries who are on those meds know why they are so ill?

September 10, 2008 at 3:49 am
(422) Angela says:
September 10, 2008 at 4:54 am
(423) margaret, Auckland says:

Have now been on the Thyroid Support tablets for just on a week plus I am still taking levothyroxin. I do believe they have helped me as I certainly am feeling alot better, its worth a try. The brand I bought was from my chemist, brand name clinicians. Cant do you any harm and was recommended to me by an ENT specialist.

September 10, 2008 at 5:08 am
(424) Pauline says:

Hi Cathy..
Tried your e-mail address but the mail-man refused to deliver.. Can you try contacting us at mariner10@xtra.co.nz

September 10, 2008 at 6:43 am
(425) Cathy says:

Hi Janice. Good to read your comments, yes for sure you can contact me, would love to hear from you. Spent an hour with my GP in Palmy today, very helpful and intersting.
Cheers

September 10, 2008 at 8:06 am
(426) Jay says:

Congratulations to all! I’m sure for many of you it has been a long arduous road to this point.Well done for believing in yourselves and listening to the wisdom of your body(even if you doubted it sometimes!).Medical science, vested in the hands of a few uncompassionate and manipulative people, can wreak havoc in our lives.Look at the Eltroxin debacle!However, it is people like yourselves, who don’t give up, are feisty and who listen to the messages of the body…influence the greater good.It always starts somewhere, with one person, a single thought or a single idea – and look how far this has come.Thank you to the brave and determined friend who began the relentless inquiry. Like all of you, I have been having the same bizarre symptoms for the past few months, with it reaching ‘fever pitch’ since July/August.Hair growth on face (I’m female), aging hands, acne rosecaea, depression, lethargy.negative thoughts,etc…Intuitively, I suspected the Eltroxin and so I began my own experiment of sussing it out.And as you would know, when I stopped taking it, I felt like the sun shone again!Then I took a few of the ‘current baddies’ and the gloom came back.Then I took a few of some ‘old ones’ that I had leftover and I didn’t do too badly.Went back on the ‘current baddies’ and back in the gloom phase.I have discovered a supplement by Clinicians NZ called Thyroid Care and will be taking this to support my thyroid function.What really got me thinking (when I could!)was although I am trained in motivational techniques and deliver seminars on wellbeing – I just bottomed out.My saving Grace was using the techniques of meditation,inner journeying,NLP, etc to try and cope.I have to tell you that this was no mean feat!It felt as if I was in a cocoon and couldn’t get out.I’m thankful that I’ve emerged once again and feeling heaps better.My family is so happy to have me back again!Medical fascism is an insult to our integrity and robs us of our dignity.It is disempowering.What concerns me also, is that as a developed country we have the means to address this – what about the developing nations? Who listens to them?As we empower ourselves, we empower others.So let’s share the information and create the exposure in developing nations as well.

September 10, 2008 at 4:30 pm
(427) Sharon C says:

Sharon(Ireland)
With alot of hard work and a few tears. I convinced my doctor to prescribe Armour Thyroid I’ve been taking it since Saturday and in the five days I feel 1000 times better have more energy no more cold hands and feet. And I have lost 3kgs which is the real big bonus. I would recommend anyone having problems to give the natural version a try. It’s worth a shot.
Also my doctor said that it is very likely that my body is rejecting the Goldshield Eltroxin (levothyroxine)

October 12, 2011 at 9:40 am
(428) Nino says:

Hello
I am also in England and lfor about three months feel changes and all those symptoms you mention and others that write here.
What do you think about open a web page or facebook that anyone who has symptoms and is in England to join for a lawsuit against the company that distributes this drug?
Write to me: nino.aziz9@gmail.com
Thanks

September 10, 2008 at 6:27 pm
(429) Dawne says:

Hi Jay and Sharon. Good to hear you are both coming right. Sharon is there any way to spread the news your side of the world?
Jay I was like you a little over amonth ago until I stumbled over Pat’s site and joined her group. So much to thank her for. Now life is so great. Better than on the old glaxo pills too. I was like you. Lived in a cocoon always felt isolated from all going on. We had a number of family events in the 10 months I was becoming so ill and I feel very cheated to have been there with them but not feeling part of anything. Like you my family are thrilled to have me back. It has been an experience being involved but it’s not over yet.

September 10, 2008 at 9:32 pm
(430) jilly says:

Jay – I would stop taking the GSK medication, even though your other methods are helping you cope – what is the Eltroxin doing to your body ? There are alternatives available and Govt is announcing today – what will be subsidized and when.

Sharon – unusual to have reaction to Goldshield, as it is high quality – so, i wonder if you need a T3 med – maybe consider natural whole thyroid ??

September 10, 2008 at 11:13 pm
(431) Denise says:

Alternative to Eltroxin on the way
Thursday Sep 11, 2008

Good news for hundreds of New Zealanders who have suffered painful side effects from a controversial drug used to treat an under-active thyroid gland.

Health officials say they should be able to confirm the availability of an alternative drug by the end of the month.

Thursday’s announcement follows a flood of complaints about Eltroxin, the current drug being supplied by PHARMAC.

Since the formula to make up the drug was changed a year ago, people using it have complained of headaches, rashes and problems with their vision.

Medsafe’s Dr Stewart Jessamine says they’ve now had two applications from companies that supply an alternative drug and they hope to have made a decision about what’ll be approved by the end of the month.

September 11, 2008 at 1:14 am
(432) Angela says:

http://www.moh.govt.nz/moh.nsf/indexmh/eltroxin
also click on the word document at the end of the page.

September 11, 2008 at 5:05 am
(433) Carol B says:

Wow! I can’t beleive what I’ve just been reading – everyones comments! Now I know whats been wrong with me for all of this year.
I have been taking Eltroxin for nearly 9 months unbeknown to me. I am 51 and just thought I was menopausal and that I will come out the otherside and everything will be ok soon. Yeah right. And now I feel like I been slowing poisoning myself.
What made me get on the net was my 13 year daughters comment to me tonight “how come your never happy anymore” !!!
Oh my goodness – I had no reply for her!
But now I do – well I don’t know if I can 100% blame it on the pills?
But thanks to everyone I will be onto my GP tomorrow and I off Eltroxin – until there is something else I can take
CAROL

September 11, 2008 at 5:13 am
(434) Angela says:

Carol
you are not alone!!! and its simply not fair. It is getting more publicity and has been on tv, radio and newspapers today as well.
are you able to report your side effects to CARM – they are starting to take notice, and we need every single one documented.
if you can email them with your name and all the symptoms you have had.

carmnz@stonebow.otago.ac.nz

September 11, 2008 at 5:38 am
(435) Carol B says:

I certainly will! Anything to get this all sorted out and not allowing the Pharmacs of this world to just do whatever they like. I just can’t believe I have ignored my body this long – the aches and pains that has developed in my back and legs has been incredible just thougt it was old age! and the headaches I would have in the mornings I couldn’t understand – especially when I hadn’t even had 1 glass of wine the night before!! Sorry about my whinging just feels good to tell other people in the same boat.

September 11, 2008 at 6:02 am
(436) Angela says:
September 11, 2008 at 6:03 am
(437) Pamela says:

Please click on http://whqlibdoc.who.int/hq/2002/WHO_EDM_QSM_2002.2.pdf
The World Health Organisations guide on The Safety of Medicines—A guide to detecting and reporting adverse drug reactions & why health professionals need to take action. It comes up as a PDF file & you can save it to your PC.

Relevant quotes from the guide : The objectives of the Guide are to raise awareness of the magnitude of the drug safety problem and to convince health professionals that reporting of adverse reactions is their moral and professional obligation.

Quote from Page 9 : Therefore, drug monitoring is of tremendous value as a tool for detecting ADRs and specifically in relation to counterfeit and substandard
quality products. ADR monitoring is to help ensure that patients obtain safe and efficacious products.

September 11, 2008 at 6:07 am
(438) Angela says:

Carol
come and join us all on http://keenkiwi.orconhosting.net.nz/index.html
we have a few area groups being formed for support on this issue
also if you email pat – her email is on that site – we have a group email to keep us all up to date

September 11, 2008 at 8:27 am
(439) jilly says:

Carol, I just wonder how many people there are still out there, like you. I blamed all my problems on this that and the other, as well, never gave Eltroxin a thought, and neither did my Dr, until I read about it in the newspaper in June.

Yet Mr Jessamine seems to think everyone that has not reported adverse effects must be totally well on the Eltroxin, and that the media is causing hysteria, rather than seeing the media as helping people see what their illnesses are being caused by.

Please, please report your adverse effects – and encourage anyone else you know to do the same. Else he will be believed, and many people will continue to suffer and be given drugs they do not need to treat symptoms caused by GSK eltroxin.

It makes me so mad that I have lost 8 months of my life bacause of this botch-up, when I did everything right – took the pills correctly, reported my problems to my Dr who failed to recognise them as adverse effects as stated on the info sheet produced by GSK regarding Eltroxin.

September 11, 2008 at 7:15 pm
(440) Dawne says:

I was wondering if everyone who is now on Goldshield are satisfied with the results or still having anyproblems. Would also be interested in hearing from those just starting the synthroid how they get on with it. I have been on Almus actavis and am apprehensive on changing again next month. I actually can’t remember when I felt so well which says something about even the old glaxo pill. I was never really well for 14 years on that. Would also appreciate hearing from anyone whose chemist is supplying them with the actavis and if possible where they get their supply from to tell my chemist I know some chemists are supplying it in some places. A big decision coming up.

September 11, 2008 at 7:37 pm
(441) Helen says:

I am a user of thyroxine in NZ and luckily am only slightly affected.I was diagnoised hypothyroid about 6 years ago.Two years ago I visited a naturopath complaining of suffering from lack of energy despite my thyroids meds ( only thyroxine- T4 ) He advised me to go onto whole thryoid which my doctor happily agreed with. It made an improvement but about a year ago blood tests showed I was getting too much T3 so she reduced the dose of whole thyroid and added back 1 tab daily of eltroxine.( T4 ) to balance it. All fine for a while but recently I lost energy and started gaining weight again. This coincided with the change in supply. So now I am taking it before food which was nt necessary before and increasing the dosage again. The new supply seems to be totally ineffective as my blood tests ( nor my energy levels )dont show any improvement in T4 levels despite upping the dosage. Luckily I continue to take whole thyroid ( 90 mgs daily ) which keeps some stability. I feel sorry for anyone only on Eltroxine. I am hoping to get hold of the Goldshield product soon but there is a 6 week waiting list.

September 12, 2008 at 12:07 am
(442) Carol B says:

Thanks everyone, yes I have reported my symptoms to CLAM and been on the keenkiwi website. Been to my Dr today and also had blood test today – be interesting how that is?
My Dr told me they hadn’t been told of the change in the formula, but surely I should have been told by the pharmacist when I filled my script?
Also spoke to our pharmacist this afternoon and he said he can get Synthoid for me from Auckland – but of course this will cost me!
I am willing to try anything.
I just realised it has been 7 years this week (Sept 7) since I had radioactive iodine treatment for Greaves Disease! and now I feel I’m back to square one.

September 12, 2008 at 4:35 am
(443) maggie says:

Im on 300mcg thyroxine a day. Im not sure exactly what brand as my medication is in a metered box with my other meds. The things I have noticed since the formulation change is that i get diarrhoea within 40 min of taking my meds, if i miss a dose i get irritable, tired etc. I am always cold, my temperature sits at 35 deg/C, dry itchy skin and visual disturbances.
Im concerned about the available alternatives. It seems NZ will be importing Synthroid as the alternitive to eltroxin but from what I have read in the comments furthur up, it has also been reformulated with adverse reaction resulting.
I might have to start looking at a natural thyroid suppliment.

September 12, 2008 at 4:32 pm
(444) Pauline says:

Hi All..
Totally agree with Jilly (428) in fact not only encourage but anyone at all who reads this forum, you are duty bound to report your problems to CARM. I think all those 70 thousand people who are or was on Eltroxin must report their concerns to CARM. Even if the side effects are minimal. Click onto Pamela’s (426) link and check it out. Good reading. It’s worrying enough to know the majority of GPs in New Zealand either don’t have a clue about Thyroid problems or are not willing to step outside the medical box and try something that actually works. Anyone out there who has a GP who is willing to do that is very lucky!! That GP ought to go on new year’s New Years Honours list, because he or she is a legend in this country. That goes for the rest of you people outside of New Zealand, who are reading this forum, you must have somewhere in your country you can report adverse effects of a particular drug you have been prescribed, or anyone you know who has thyroid medication problems ask them if they have contacted that department. Do it!!!!!!

September 12, 2008 at 8:06 pm
(445) Angela says:
September 12, 2008 at 8:45 pm
(446) deborah says:

it’s a shame that it has taken so long for the right people to listen. I have been complaining to my doctor since August of last year that the thyroid medication had changed and even complained to GlaxoSmithKline that it was not working, along with the familiar hypo-thyroid side effects returning plus many new ones mentioned by others. GlaxoSmithKline sent my pills away for testing in September of 2007 and wrote to me in October of 2007 to say basically they were sorry to hear of my problem but the pills were fine. I can’t wait for this to be resolved and start living a normal life again.

September 13, 2008 at 3:23 am
(447) Carol B says:

Yes you are right Pauline(433) anyone who has a DR who understands and listens to what we have to say in regard to our situation is onto a winner. And I said I had reported my symptoms to CLAM instead of CARM!!! sorry must be the pills?
My local pharmacist has ordered WTE for me and I should have them in a weeks time? He said he could have got Synthroid as well if I prefered bu wasn’t really sure. Some say that WTE has animal base products(?) and some say they don’t like the synthetic makeup of Synthroid. So I don’t know – just wanna stop this madness and get onto something that will make me feel a whole lot better

September 13, 2008 at 8:37 am
(448) Vialda Melian Woo says:

For me, it have been terrible, I feel dizzy, blurred vision, and a big apetite.I never though it was the pill until I heard other persons .

September 13, 2008 at 3:45 pm
(449) Lindsay says:

I haven’t made comment before but have been reading comments for some time. Angela you asked for all to send email to CARM to report your side effects (423) I have now done that. Thank you for posting the address. My side effects haven’t been as huge as some but they are still there and I have been generally unwell all year as most of us have been. Am seeing my Dr tomorrow to get the alternative. Heres hoping that we all feel better soon.

September 13, 2008 at 7:37 pm
(450) Angela says:

Hi Lindsay
thank you for doing that. it will be interesting to see how many more complaints they have when you receive your reply.
Before May of this year I did not know about
CARM or that I was the one who had to report problems. when i had a problem with another tablet of mine, couldnt stop coughing, my doctor applied for special circumstances for me to have another one – which was fine. we had to fill out a form and sent to to Wanganui. I am sure lots of people would be in the same boat.

has any one seen this site
http://scientific-misconduct.blogspot.com/

September 13, 2008 at 8:46 pm
(451) Dawne says:

Have just read that site above Angela. Can’t help wondering what it takes to get the World Health Organision involved.

September 13, 2008 at 8:53 pm
(452) Dawne says:

Sorry meant Organization. If, when it was stated that interaction between medications was being considered, why were we not asked what else we were on? Not that I was on any others as refuse them whenever I can. Wish I had that choice with thyroxine. The odds on so many being on the same other meds is pretty unbelievable. Looks like a lot going on behind the scenes though.

September 13, 2008 at 9:23 pm
(453) Angela says:

we have been asked to add our thoughts to this petition as well. hope the link works

http://www.intlhormonesociety.org/index.php?option=com_content&task=view&id=31&Itemid=53&tomHack_idp=10

September 13, 2008 at 9:59 pm
(454) Sylvia says:

Is there anyone out there who is getting a very high TSH blood test result on the eltroxin since formulation change. I am having a lot of trouble

September 13, 2008 at 11:46 pm
(455) carol graham says:

hello everyone, Thought you might like to hear that I have been off
GSK thyroxine for four weeks and on Goldshield for seventeen days. Today for the first time in months I feel human again.The terrible headaches are gone as are the sore aching eyes. My neck is not painful and I am feeling full of the joys of Spring.Like everyone else I feel very angry that we have had months of suffering. Hope everyone out there still suffering feel better soon!

September 14, 2008 at 12:38 am
(456) Stella Seymour says:

After feeling generally unwell for the last 3 – 4 years but believing that I had not fully recovered from major bowel surgery in July 2004 I have soldiered on despite feeling as though I would rather be dead.
I seriously started complaining to my GP MONTHS ago that I was experiencing Hypothryoid symptoms despie taking thyroxine regularly and as prescribed – I even gave him a handwritten list of symptoms mid 2007.
(I have documentation to prove this) I spent a lot of money trying to find out from both my GP and a specialist ( ECG / Xrays/ Sleep Apnea tests etc) why I felt ghastly. I was treated by my GP with Prozac and he assisted me ( albiet grudgingly ) with medication to get me to sleep.
My on-going symptoms were Daytime exhaustion / nighttime sleeplessness/ Eye Migraine/ weight gain despite diet/ joint and muscle pain/ headaches/ heart pounding / bad mood/ weeping for no reason/ sweating feet and a sensation of heat in my right quadrant etc etc.
I know that my GP and my entire family and close friends have become sick and tired from my constantly “banging on” about feeling as though I was dying and my family lost respect when they saw how LAZY and fat I have become.
My husband mentioned to me just three weeks ago that he had heard something on the early morning radio news about Eltroxin causing problems in NZ – he asked me if I was in fact on Eltroxin and not the Levothyroxine as stated on my pill bottle. I became suspicious but did not realise there was anything I could do about it. I did some homework via the internet and made enquiries to my pharmacist (to determine exactly what I was taking and for how long I had been taking it) My treatment changed from the “old thyroxine” to the new Eltroxine in late 2004.
My pill bottles read Thyroxine (APO) until March 2008 when I noticed the name changed to Levothyroxine (ELT) When questioned at that time my pharmacist told me that the name only had changed and that the only difference was the name change. I was told that the name had changed mid to late 2007 but that the pharmacy had only been requested to display the new name in late 2007.
My former pharmacist (Gisborne) advised me when I phoned him on Thursday last that I had first been dispensed the “new” formulation in late 2004. MY ALARM BELLS WENT OFF.
Last Wednesday I told my GP I was not going to take Levothyroxine any more – from that day onwards – and I asked for a prescription of the alternative medication that CARM told me was available. That alternative being Synthroid. Despite my GP and Pharmacist not being aware (as at Wed last – 10 September 2008) and after I had rattled the cage suddenly and by some strange co-incidence I was contacted by my pharmacist on 12 September 2008 and was advised that they had Synthroid available for me at their dispensary. Yes that is right TWO DAYS LATER.
I uplifted three months supply on 12 September at a cost to me of $144.00 being $72 for 3 months supply of 100mcg and $72 for 3 months supply of 50mcg.
Psychosomatic (I know not) but on the very morning after I stopped taking Levothyroxine (Thursday last) I have woken without a headache I have no sensation of heat in my right quadrant / I have not slept during the day and I cannot sit still. Brilliant.
Yesterday I read in the NZ Herald newspaper that according to Jim Anderton supplies of Synthroid would hopefully be available for NZ women and men in about a months time – Oh the spin. It is here NOW. Check with your pharmacist and if you cannot get it please contact PHARM urgently in Otago. Good luck and better health to you all.

September 14, 2008 at 3:23 am
(457) Carol B says:

Good on you Stella, there is hope for me (all of us) yet. I feel so sorry for you for having to put up with it all for so long, I only been on Eltroxin for 9 months after 7 years in total of being on thyroxine.
My local pharmacist (locum from Auckland) ordered Whole Thyroid for me on Friday (12th) he said he could get me Synthroid if I wanted, he couldn’t tell me how much it was going to cost me? but after reading your comment I got a fair idea how much it will be!! it certainly gives me hope to hear that you got your new tabs. and doing well. I haven’t stopped taking the Eltroxin entrirely yet but have reduced my dosage to 100mcg daily – cause I was too scared to just stop taking anything altogether – cause like you I had put on weight- but 1 month ago I severley cut down on my food intake and have succeeded in losing 4kgs! I haven’t been able to exercise anymore than usual due to the severe aches and pains in my lower back, hips and legs. So hopefully by the end of the week I will be able to report back after receiving my new tablets.

September 14, 2008 at 3:58 am
(458) roha says:

I’ve spent the afternoon trawling the web for excipient (non-active ingredient/binder and filler) lists for old and new GSK Eltroxin, Goldshield Eltroxin and Synthroid. All have of course the same levothyroxine=thyroxine=sodium thyroxine active agent: they can’t have identical profiles of the add-ins to register as a brand but the differences are interesting. Since one/some of these are what you body is probably reacting to if you’re having adverse/allergic/toxic reactions as opposed to just bioequivalence ones (those are the people who just need a dose adjustment), do look them up. Found by going to the drug company sites. I’m avoiding the Synthroid because like the new GSK it has silicon compund additives and I remember the leaky breast implant horror stories! Goldshield and the old GSK don’t have any silicons and have a similar list, but the GoldshieId does have sodium citrate which was not in the old GSK. I hope my body will be okay with that. But guess I’m just cautioning that changing to an alternative may not necessarily solve your problems – all depends what’s in it! Maybe you’ll need to try more than one. Hence the need for alternatives plural!! Just hope Medsafe and Pharmac deliver!

September 14, 2008 at 11:46 am
(459) polygonum says:

The potency required by New Zealand is in the range 90 to 110% of label claim. The achieved range of the new tablets according to the independent testing was 91.9-100%. The old formulation achieved 97.7-100%. That represents deterioration in potency at the bottom of the range of 5.8%.

The potency requirement in UK and USA is 95 to 105%. The new NZ formulation would not conform.

And yet… – they claim that it conforms to national and international standards. Well – don’t try selling it in the UK, please.

September 14, 2008 at 5:30 pm
(460) jilly says:

Helen – in regards to your TSH levels, and you Dr changing your dose, have a read of this http://thyroid.about.com/od/gettestedanddiagnosed/a/normaltshlevel.htm

It may be that you can stop eltroxin and remain wholly on whole thyroid, once you get the levels correct

September 14, 2008 at 5:47 pm
(461) jilly says:

Hi there, Maggie
The only funded meds available in NZ are GSK eltroxin – regardless of the name on the bottle.

What you describe are classic side effects.

Alan Campbell, the chemist that has been in the media right from the start, fighting for us, says that Synthroid is an excellent alternative for those that want to remain on Synthetics.

Please do send a report of your adverse effects to CARM – we must keep making them aware !

September 14, 2008 at 5:53 pm
(462) jilly says:

Sylvia, yes – raised TSH level is another side effect (this is one of the few that even Dr Jessamine recognises). Like others, you need to see your Doctor, discuss your situation, arrange for an alternative and send a report to CARM>

September 14, 2008 at 6:00 pm
(463) jilly says:

Stella, when I read yur story, I became very angry – yet another person who has had a huge cost to pay – not only loss of quality of life for so long, but a financial loss. Yes, you can get alternatives now but they are NOT funded – you will have to pay.

The ones Jim is referring to, will be funded – but they how will you be able to recoup all that wasted money over the last few months trying to find out what was wrong ??

September 15, 2008 at 4:05 am
(464) Pauline says:

Hi Silvia (443)..My TSH has been over 100 !!! As Jilly said at 451 this is one of the side effects of the Gwano we were prescribed!!!

As an aside for all of us suffering from the effects of this medical misadventure in New Zealand (and overseas for that matter), we also have to consider the families that have been upset and hardship, especially if the patient is/was a working mum or dad. It really makes me mad to think we’ve been all stuffed around because of money…That is really the bottom line in all this, cheap medication. It’s not the 800 odd that have complained, it’s probably the 1000′s out there with Thyroid problems, who still don’t realise what the hell’s happening to them and are ignorant to what’s going on. I really appeal to anyone who knows of anyone else who is suffering from Thyroid problems to come forward. All you have to do is to bring it into conversation, especially with the national interest here in New Zealand, and people come out of the woodwork!!

September 15, 2008 at 5:56 am
(465) Angela says:
September 15, 2008 at 6:01 am
(466) Angela says:

that didnt seem to work
try this one
http://www.scoop.co.nz/stories/PA0809/S00333.htm

September 15, 2008 at 6:46 pm
(467) tasha says:

hi jilly, can you help with an enquiry please… I have been out of the loop for the last week nursing my youngest with chicken pox…. Am i right in assuming that goldshield is going to be funded by pharmac ??????????? Many thanks tasha

September 15, 2008 at 6:57 pm
(468) tasha says:

because i have to up the amount the pill s taken and i will run out soon but i don’t know whether i want to continue with the same ones or wait for a new one…. getting so frustrated my hands are munted but the doc says it is because i have 3 kids hands always in water and am getting old bah hum bug i’m not even 30………….. plus my hair is still thinning and yet i was told that if i went on medication it would stop…. well i never had problems with my hair till i went ON the medication… Now its thinning and gets oily super fast which it never used to sorry for the bleat, i hope everyone is having a lovely day

September 15, 2008 at 9:10 pm
(469) Donna says:

I have been taking thyroxine for 25 years. Toward the end of last year I started experiencing dizzy spells, headaches, weight gain, tiredness, fatigue and dry skin. I went to the Dr twice and had various blood tests. They all came back fine apart from TSH which was at the low end of ‘normal’! The Dr’s suggestion was that “the weather has been quite hot lately” and “you’re probably taking too much thyroxine – maybe you should cut down”. I will be tremendously relieved when this is all sorted and I applaud the courage of those 800+ NZers who persisted in complaining even though they were tired and their Dr’s were dismissing them as neurotic.

September 15, 2008 at 10:43 pm
(470) jilly says:

Hi Tasha, hope your daughter is well now – it’s hard enough coping on those GSK without added stress.

And – your Dr is talking through a hole in his head – I am a cleaner, so I reckon my hands are in water far more than yours, and my hands are NOT munted. Might pay for you to find another Doctor that knows more about thyroid problems – hair falling out is a big symptom.

We do not know which will be funded, both Goldshield and Synthroid have put in applications and are being considered. Both of these are good quality and people on either are finding them good – some more than others – each to their own, I suppose, as one shoe does not fit all. Alan Campbell, the chemist that has been fighting for us, says both are good.

Synthroid can be obtained from your chemist – but it costs – only get one months supply to last until one or other is funded.

September 15, 2008 at 10:48 pm
(471) jilly says:

Donna, you have the classic side effects to GSK. Your Dr can prescribe you an alternative under Section 29, and the chemist can obtain Synthroid – you will feel better within days and continue to improve. I stopped taking GSK, and took nothing for 3 weeks – within a day I felt like my old self again, and within a week even my eyesight was back to normal.

Please send a report to CARM – we need everyone to continue to do this – as unless people do – they will continue think it is only a very small percentage of the 70,000 on these pills. So many people do not bother – and then wonder why it takes so long for those that do to get things changed.

September 15, 2008 at 11:12 pm
(472) Lindsay says:

Hi all
Just a quick update. Especially to those of you who are afraid of changing to the new drug because of cost. I visited my GP yesterday and started on Synthroid today. The script cost me $15 for 3 months supply. I would have paid heaps more than that to feel better.I don’t consider that expensive.
Something intersting that maybe someone can clarify for me. My chemist tells me that eltroxin is supplied all around the world but NZ is the only place that is having problems. Surely this can’t be true. Has there been any feedback from overseas?

September 16, 2008 at 1:50 am
(473) Dawne says:

The pills causing the problem here aren’t used in USA Canada or Uk. Other countries have alternatives and yes there have been some on this site who are having trouble from other countries.

September 16, 2008 at 5:49 am
(474) JAS says:

I’m not sure if I’m being under-medicated or reacting badly to the new formula Eltroxin.

I have Hashimoto’s thyroiditis and have been on Eltroxin for close to seven years. This past year has been horrendous, with a combination of worsening symptoms and a GP who ignored pretty much everything I said about how I was feeling (this has been a pattern with this particular condition) and finally, six months ago, told me that as my blood test results were in the normal range it was obviously my mental health that was the problem. Boy, did that make me feel like crap, and it was also déjà vu as this very same doctor had misdiagnosed me as depressed for who knows how long before she finally got around to doing the first TSH test.

She had mentioned, on occasion, that she believed it was better to under-medicate so as not to push me to hypERthyroid, which I was okay with while I was feeling well, but my health has deteriorated massively over the past year – all hypothyroid symptoms; everything else is fine – and, even with one small increase in my dosage that she begrudgingly agreed to around six months ago, it continues to deteriorate.

I have a new GP now – there were only so many times I could be ignored or told I was a hypochondriac – but she, too, seems to believe that so long as my TSH falls anywhere within the “normal range” I’m fine. Even if I say I’m not.

I feel like I’ve hit a brick wall. And when I first read about the problems with Eltroxin I thought perhaps I’d found the answer, but having read through the kinds of symptoms people have experienced – headaches, nausea, aches & pains, etc – I’m now not so sure. My symptoms have been classic hypothyroid – hair falling out again, fatigue, brain fog, feeling cold all the time, dry skin, weight gain etc. – which is why I’m wondering if it’s simply that I’m being under-medicated. Having said that, though, I have definitely deteriorated more since I had the slight increase in dosage, so perhaps it is the Eltroxin and I’m just not having quite the same symptoms as other people?

I’m seeing my new GP again on Friday – I can’t handle feeling this lousy anymore and really want to push her to do something – but I’m confused about what to say, what to ask, what I need. And I feel at a real disadvantage because I’m just finding it so difficult to string together coherent thoughts and sentences these days (which is why this comment has ended up being so long!).

September 16, 2008 at 5:58 am
(475) Stella Seymour says:

Maggie (161)
Yes Vertigo was one of the symptoms I first reported to my GP ( June 2007) in writing. I noticed my vertigo daily when I was walking it being a feeling of stumbling – always to the right side – without actually moving at all. Also when I was sitting feet up in Lazyboy every evening I swear the chair would sway as though I was on a boat. I used to look to my husband to see if he looked as if he could feel it too and I always checked the hanging lights just in case there was actually an earthquake going on. Their never was one of course. Weird.

September 16, 2008 at 6:09 am
(476) Stella Seymour says:

Jilly (162) and Lynette (163)
Lights in eyes. Yes I have them too occasionally over last three years – Only in right eye and they look like a half circle of bright light (silvery) with zig zag bits sticking out of them. I also loose the sight in that eye temporarily – really strange because if I look at anything I can only see half of it. No pain associated withevent but every time I get it I take two panadol – always have done
Mid last yesr I mentioned this light event to a locum at my General Practice and he told me that I was perfectly describing an optical migraine and apparently the right thing to do at the onset of one of these things is to take two panadol or similar.

September 16, 2008 at 6:23 am
(477) stella seymour says:

Jas (463)
Like you I dod not know wha to say to the GP but I was determined to say something so I told her that I simply refused to take Levothyroxine ever again – from last Wednesday onwards – and I asked her to prescribe Synthroid for me. I got the Synthroid on the friday – two days later.
The very morning after I stopped taking the Levothyroxine I woke for the first time in months without a dull heavy headache behing my left ear. I have not had the headache again not even sinve I started taking Synthroid. Good Luck. Sometimes these doctors need to be reminded that they are there to please us rather than us being there to please them.

September 16, 2008 at 6:24 am
(478) Angela says:

Jas
Stewart Jessamine would say you were undermedicated but it certainly looks like you are reacting badly to the new eltroxin like thousands of others. can you get your doctor prescribe an alternative for you. I can tell you first hand that the symptoms you describe are REAL and only get worse if you continue taking them, however you do need to take thyroxin in some form. also please send these side effects with your name and address to CARM – really, really important
carmnz@stonebow.otago.ac.nz
Let them be the judge if the side effects are connected and anyway you will know yourself if you start to feel better when you swap tablets. not every one has had changes in their blood tests.
Only get one month supply at this stage as they are likely to be subsidised in the near future.
I know I sound like a broken record but there is something seriously wrong with this formulation of eltroxin, and i am not going to stand by quietly and watch more people get sick.

September 16, 2008 at 7:23 am
(479) Angela says:

stella
have you had any problems with your ear, i do know of someone who has damaged hearing now. my mother also had funny noises in her left ear, on and off and a loud bang in her head before being rushed to hospital. we havent had her hearing tested but i am finding she is not hearing as well.

September 16, 2008 at 10:11 am
(480) jilly says:

Jas, I agree with what Angela has told you. So, if you want to stay with your doctor, and still get off the GSK, how about printing out this page and taking it to him to read. He can also look up his own Doctor’s site where they give updates on medicines and he will find it there are well – seems like do many other doctors they are not up with the play. Just say – read this, and give me a script for Synthroid.

Stella, I have not seen the light (pun) since I stopped taking GSK. I never took any pills when I was having the lights in my eyes (exactly as you describe) and never got a migraine either.

September 16, 2008 at 4:42 pm
(481) stella seymour says:

Angela (468)
I have suffered from a loud ringing in my left ear for many years. Intermittent but very annoying when there.
I feel so sorry for my poor Mum who suffered Hypothyroidism for many years. We used to think she complained so much. Mum NEVER got her hypothyroidism under control before she died in 1985 – she always battled overweight, she had angina and fluid retention. She also developed skin dieases that were unsightly.
So when it became my turn to suffer the same effects she used to complain about I believed that it is simply my turn and that my gene path was mapped for me. I now believe differently. Since refusing to take Levothyroxine ( just one week ago today) and having started taking Synthroid last friday I ALREADY feel much better. Haven’t had ear-ringing or a headache since last Thursday.

September 16, 2008 at 9:14 pm
(482) JAS says:

Thanks so much for the replies and advice.

Reading back over my diaries last night, I think the timeframe for my symptoms returning (the latter half of last year), and worsening (after a slight dosage increase six months ago), really does pin it down to Eltroxin. Plus, I found other symptoms that I’d noted at the time but hadn’t thought were thyroid-related and had then forgotten about. There was a string of headaches which I’d just put down to tiredness, a few months ago I had ongoing backache which I’d just assumed was a recurrence of an old disc injury (and physio exercises did help it), and I’ve had this weird dull sensation in my ears for months, but I’d just put that down to the constant colds and chest infections I’ve had this winter.

So I’m thinking that changing medication completely is the way to go, rather than increasing my dosage again. I’ll talk to my doctor about a replacement (although cost is a factor so I may have to wait for something subsidised) and I will also report my symptoms to CARM.

September 17, 2008 at 2:46 am
(483) jilly says:

Jas, phone around the chemists in your area and ask if they have Synthroid in, and what they charging for it – you may be surprised. The sooner you change, the sooner you will better *smiles*

September 17, 2008 at 2:48 am
(484) jilly says:

Jas, I would suggest you phone around the chemists in your area and ask if they have Synthroid in, and what they charging for it – you may be surprised. The sooner you change, the sooner you will better *smiles*

September 17, 2008 at 5:20 am
(485) kbarnes says:

I was in USA and on Levoxyl for 5 yrs without any problems. As soon as i came to Africa and went on ELTROXIN, my problems started. my face became puffy, my eyes swollen and at one time i got strange bumps on my back, chest and throat. i stopped the eltroxin for a few days and the bumps went away immediately. whenever i forget to take the Eltroxin my face feels better as the swelling start going. recently i had blood tests. my TSH is HIGH (10) double what it should be and yet my T3 AND T4 are both normal! strange i think.
I am trying to find an alternative to ELTOXIN at the moment. thanks GlaxoSmithKline.

September 17, 2008 at 5:23 am
(486) kim says:

wow, if only i had heard about all this sooner huh. I have been so tired for so long now that i just cant be bothered with my doctor telling me we just have to adjust the dosage again and then it will all be ok. have paid a fortune to hear that over and over again. my head hurts, my eyes hurt, did i mention how tired i am? and itchy! and oh yea, i no longer have a job!!! what now, if this is all related to a drug then someone needs to answer for this mess. and i have to ask, if we all have these same symptons then why has my doctor never mentioned that this could be the cause. i have been made to feel like i have been making this up and yet there are so many people on here!

September 17, 2008 at 5:46 am
(487) Angela says:

Kim
dont up your dose. Ask your doctor for a substitute ASAP. this gsk eltroxin has something seriously wrong with it. we dont double disprins if they dont work do we? There should be some better reporting of side effects between doctors as well as their drug dictionary. Without the media hundreds of people would still not know what was wrong. I still feel strongly that gsk should be made to recall every tablet. 3 babies have had to die on the contaminated milkpowder in China, so how many people have to die before they do something about this fiasco.
I like your description kbarnes
ELTOXIN it sure is!!!!!!!!

September 17, 2008 at 5:59 am
(488) Ally Leng says:

I had the new formulation since April . I have gained 3 kgs even with watching what I eat ,I had a cough I could not get rid of after having a virus (flem in throat . Dizzines to the point of nearly fainting . bad memory and fatigue . I was lucky enough to have had some of the old yellow ones left from a previous script . I got back on them .100mg per day . And got a script from from doc to get gold sheild . Alas ,no longer available in N.Z Was told a Canadian brand is here and Pharmac are holding on to it and not letting Abbott lab distribute it because its not registered. How can they do this ? Does someone have to die before they stop playing God .I am trying a Herbal Alternative called 7-Thy from a health shop. Not sure how much I need though .Will never take the others again . I saw there is a herbal alternative in Aussie too .Good luck everyone .

September 17, 2008 at 6:05 am
(489) stella seymour says:

So enraged are we sufferers in general. It is easy to become angry towards our GP’s and pharmacists because THEY are the people(outside of our families) that we have expressed our on-going problems to.
Removing emotion from the equation we should not be mad at them because after all a GP only receives one 20 minute lecture during the entire time he / she is at Med. School.
Where I do think there is a problem is that there MUST surely be an organisation to which GP’s and pharmacists can report repeatedly stated adverse side effects to any drug. I wonder if GP’s and Pharmacists have in fact been reporting any instances of reported adverse side effects to any such organisation. Does anyone know anything about this aspect of this debarcle.

September 17, 2008 at 3:44 pm
(490) Trish says:

Stella Seymour – I would have to TOTALLY disagree with your statement that we shouldn’t be angry with our “GP’s and pharmacists because THEY are the people (outside of our families) that we have expressed our on-going problems to.

The Pharmacists have a responsibility to inform people that they are dispensing Thyroid medication to if there are any changes to that medication to. As has been shown throughout NZ that clearly has not happened in most cases. That is absolutely unacceptable.

To say that “after all a GP only receives one 20 minute lecture during the entire time he / she is at Med. School” is actually insulting to the hundreds of people who have expressed their ‘real’ symptoms to their GP only to then be ignored. A GP should always exercise commonsense and apply logic to what they have learned at medical school. For a GP to operate inside a ‘bubble’ of knowledge that they learned in ’20 minutes’ (as you say) does not wash with the hundreds of people throughout the country, many of whom have left their Doctor’s surgery in tears with no resolve.

Think about it logically, we take a short driving test initially but think about how much more we have learned since that original test all those years ago. We can’t then say as a defense, “Oh, but my test was only 20 minutes”.

Symptoms should NEVER be ignored or pushed aside.

September 17, 2008 at 6:44 pm
(491) jilly says:

Hi Stella
Yes – there is an organisation they report to – called CARM – Centre for Adverse Reactions Monitoring, which we, as consumers can also contact – and have done – once we have realised it was the GSK.

The Doctors and Pharmasists were ALL sent information from GSK in June 07 and June 08 – so why have they not read it ?? They are equally to blame for not keeping up with what is going on in their profession.

Yes – they do have little formal training in Med school about thyroid – but, surely, if they have a thyroid patient, they should naturally extend their knowledge in order to treat that patient correctly and successfully, not just rely on a 20 minute lecture???

September 17, 2008 at 7:25 pm
(492) stella seymour says:

Trish and Jilly
My comment 478 was not intended as a defence to the pharmacists and Doctors – more it was intended to invoke just the type of response that you have given to me and to provide me with details of when sufferers began to complain of adverse symptoms.
At the request of CARM I have been endeavouring to obtain information from my pharmacist/s as to when I was first dispensed the new formulation Levothyroxine – I cannot get a straight answer from them. I believe my adverse side effects started well before the date stated to me by CARM as being the date the new formulation was first dispensed in NZ – ie September 2007.
I believe that someone does indeed need to be held accountable for prescribing and dispensing this troublesome medication, and I intend to pursue this matter to a satisfactory conclusion. I am a professional investigator. In order to obtain information it is sometimes necessary to rattle the cage.
I do apologise if I any comments I have made have upset you and I would really appreciate it if you could assist me by advising the dates etc that have been made available to you by your Dr or pharmacist as being the date you were first treated with the “bad” levothyroxine.
My e-mail address is: stellaseymour@xtra.co.nz

September 17, 2008 at 9:52 pm
(493) Sylvia says:

Hi Lyndsay (461)

Where on earth did you get your synthroid? Have just rung my chemist and she will order from australia and it will be a dollar a pill.Is there anyone out there getting Armour? I am prepared to pay but get very confused with the differing prices.I really dont know what it is like to feel well,as many can identify with.Have registered my reactions to CARM also my doctor is going to. Do they respond?

September 18, 2008 at 1:30 am
(494) jilly says:

Yay, Stella, you are the person we need to join us. If you read the comments above (I know there are many) but you will see that us “old timers” have worked with Alan Campbell and Pat Jones since early June, and begun a battle back then, which has resulted in Medsafe and Pharmac finally getting 2 applications for alternatives and are fast tracking them.

We have a website and a forum on trademe, are arranging public meetings in Auckland and Chch and hope these will extend.

I will email you – so you can ask me what you want to know about what is happening, and whether you want to join us – together we achieve more, than singularly.

September 18, 2008 at 1:36 am
(495) jilly says:

Stella
Your chemist is well behind the 8ball. Synthroid arrived in the country last week and many chemists are getting it in. As it comes in bottles of 1000, the smaller ones won’t as it is not cost effective, but the larger ones do – so phone around your chemists. Prices vary depending on your dosage and their dispensing fee.

Yes, I am Natural Whole Thyroid (not synthetic) and love it. However if you have Hashi’s it may not suit you.

By the way – you did NOT offend me, I prefer people to say what they think, and if I disagree, I will give my opinion – as we are all entitled to *smiles*

And yes, CARM do respond – but it is a stock letter, not really personal. They have had nearly 1000 reports to date.

September 18, 2008 at 1:54 am
(496) Lindsay says:

Hi Sylvia
I got my Synthroid from Silverstream Pharmacy but all chemists arnd NZ should be getting it now so ring around maybe. Good Luck

September 18, 2008 at 5:26 am
(497) Pauline says:

Hi All..

Is there anyone on the forum having problems with Goldshield, as I’ve been on it now for about 7 weeks and I don’t appear to be getting any better, in fact I have absolutely no appetite and feel quite nauseous and have been physically sick and diarrhoea!!!! Unlike the majority of other people I am losing weight, in fact a total of 22 pounds (10 kg) since I’ve been sick. I appear to be getting weaker and weaker. My husband virtually force feeds me as he is getting concerned about me not eating anything. I feel on the one hand very hungry, but when it gets put in front of me, I only manage a couple of mouthfuls. I also have violent restless leg syndrome. I just want to get back to how I used to be before all this started.

September 18, 2008 at 6:50 am
(498) Zoe says:

Sylvia you can get Whole Thyroid which is the nz equivalent of Armour from Pharmaceutical Compounding in Auck. I have been on it now for two months and can’t believe how good I am feeling. At last I can exercise again,(attempting to lose the 6 kilos I put on while on Eltroxin),I can think, and function as a normal person should. Try it, its been well worth it for me!

September 18, 2008 at 6:10 pm
(499) Sylvia says:

Jilly I have hashimotos and wondering why whole thyroid may not be suitable to take

September 18, 2008 at 6:32 pm
(500) tasha says:

for angela and stella re (468)…. Yay there is someone else who has had wxperience with loud noises in their head…. I have experienced on and off a loud cracking in my head, to the point where i get up and have a look outside thinking a gun has gone off, i also get a bubbling sensation at the top of my neck, best i can describe it as similar to a bottle of lemonade being opened… went to the doc about it and received a look of you must be a “looney tune”,….. maybe i am… and thanks jilly for your sage advice……. much appreciated

September 18, 2008 at 7:19 pm
(501) Dawne says:

Hi Pauline. I was like you are now on the old yellow eltroxin last year. Had been on it for 13 years before that and it built up slowly over the years. I have no faith in our Doctor and had been told 30 years ago I had mild IBS so decided to treat myself by reading about it on the net. It can come with thyroid trouble. Managed to find out the foods that were causing it as so many react with thyroxine replacement and got it under control over time up to a point and of course the new formula gsk had the opposite affect. I have none of that now I’m on actavis and rather nervous about having to change over to Goldshield next prescription as just starting to put on weight after many years on GSK. Hope things come right for you soon. I know how exhausting it can be to be like that. Also learnt for myself that if I felt my meds were too strong at that time I would adjust the time I had them and not wait so long to eat after taking them. Also on overseas sites it explains how weight should be taken into account when adjusting the strength of the pills. If you have lost so much weight perhaps you are needing a cut back as your symptoms fit the makers description of over dosing. Hope your Doctor is more with it than mine. Small town and now choice.

September 18, 2008 at 9:42 pm
(502) stella says:

Hi Pauline
I’m interested in the restless leg syndrome you have been suffering.
I have never investigated exactly what restless leg syndrome is but for the past three years or so I have complained to my GP that I feel as though I have worms inside my legs and I have to either get up out of chair / bed and move around to stop the sensation – impossible to ignore it. Is that what it is like.
You may be encouraged to know that since I stopped the Levothyroxine on 10 September 2008 I have not experienced the feelings. Within one day it was gone.

September 19, 2008 at 2:16 am
(503) Pauline says:

Hi Stella..

I have had Restless Leg Syndrome for many years. My daughter also gets it as well, but quite recently it has been getting worse. I would describe it more like ants crawling all over your legs (but worms would do). I can’t say in bed. My husband said it was as if I was playing soccer in bed as I appear to be running at times. I also get it in my arms and occasionally the rest of my body. The last 3 weeks it has got really bad. I don’t think my GP really knows what I am talking about. At it’s worse it looks like I’m doing some crazy bizarre dance!! I am sure that the medication I was on (Goldshield) has made it much worse. Bearing in mind I was one the original Thyroxine for about 13 years before all this blew up.
I will take on board what you have said as well Dawne as I seem to be going against the tide, I’m losing weight. Then again I’m not eating very much either. My husband cooked the dinner this evening and just the smell almost made me want to throw up, there was nothing wrong with the food or the meal in fact it was one of my favourite dishes!! I feel so hungry!!!

September 19, 2008 at 3:10 am
(504) Angela says:

Tasha 489
My aunty also described hers as feeling “a whip cracking” in her head. She has also been in hospital with unexplained bleeding from her stomach, tests showed nothing. She changed to goldshield about 3 weeks ago but is still not very well. It took my mum 5 weeks to start coming right (after 7+ months on the stuff) my aunty had been on it for 2 months.

September 19, 2008 at 6:37 pm
(505) Jane Hewitt says:

I have been on Eltroxin for a while, then after the scare was changed to Thyroxine. I have sleep problems, joint pain which knocks me flat, especially in my fingers, numbness. I used to be fit and full of life. Now I just want to get through the work day and lie on the couch. Nothing hurts if I sit or lie still. Walking is so painful, I have no strength in my hands or fingers, even opening a jar is a mission. Does anyone else have these problems?

September 19, 2008 at 7:10 pm
(506) Dawne says:

Hi Pauline and Jane. Which brand of meds are you each on now? I was like you Jane while on the new formula GSK one that made us all so ill.

September 20, 2008 at 1:57 am
(507) Deidre says:

I was wanting some advice. I have hashimotos disease and am on eltroxin I went to the doctor about two months ago because I was so exhausted all the time. She put it down to the beginnings of burnout which I have suffered from in the past. But looking at some of the comments, I am wondering, as my symptoms seem the same. Exhaustion (I have had to give up teaching which I was doing 3-4 days a week) Occasional burning eyes, like I’ve rubbed onion directly on, depression and weight gain which I had put down to overeating due to tiredness, and the odd headachy day. I’m recluctant to attribute my symptoms to the drug, because I so want to feel well again that I might be looing for any solution!!
My mother has just changed to whole thyroid (1 day) and is already seeming better – she has far more severe symptoms than me.

September 20, 2008 at 2:02 am
(508) Deidre says:

Oops, forgot to mention vertigo and dizzy spells also, which I had attributed to tiredness. I have started taking antidepressents also which have helped with the weepiness, but not the tiredness. I am 39 and have been on thyroxine for 17 years

September 20, 2008 at 2:07 am
(509) Jane H says:

Hi Dawne,
Doctor has give me Levothyroxine. Not even sure if it is a different one, or just a name change. Honestly, I feel like I am falling apart. Am having blood tests next week, so that will be interesting. Did you have the aching swollen joints?

September 20, 2008 at 2:12 am
(510) Dawne says:

You certainly sound like you have the symptoms. I found once the headaches became continual with pressure and brain fog I became extremely unwell very quickly. It seemed progressive with me. The dizziness started then and luckily I went on an alternative within a week of the dizziness beginning as it was so severe I actually passed out on the kitchen floor with the last turn I had. Never fainted in my life before. I was like you and tried to deny it was the pill causing it but came right within a couple of days of going off them. Six weeks later it’s all good.

September 20, 2008 at 2:21 am
(511) Dawne says:

Hi Jane. Yes I had the aching joints along with everything else. What colour is your new pill? The synthroid ones I believe are yellow. The GSk ones causing the trouble don’t have a line across them for splitting in half and just looked at my old ones and they have a GS on one side and are white.

September 20, 2008 at 2:58 am
(512) Jane H says:

Hi Dawne,
They are little white ones, no cutting line. Look the same as the Eltroxin. I am about to turn 53 next week and I move like a 90 year old. I have read almost all of the comments and honestly, crying, I really thought I was imagining things and just getting old. My body health has deteriorated so much in just a year. I will be seeing my GP in around two weeks, so I am going to stop taking my tablets until then and see how I feel. My fingers are swollen and ache, my knees are swollen and ache along with my shoulders. I cry alot, frustration mainly, and don’t sleep well, so I am tired. I am fed up, angry, and want some quality in the time I have left in this world. I have a granddaughter, and what an effort to do things with her. I am really sad at the moment and felt really alone, but found this site. thank god, I am not imagining things.

September 20, 2008 at 3:02 am
(513) jane H says:

Hi again, Dawne,
Just put my glasses on, the pills have a gs on the other side. So they are the same. gutted.

September 20, 2008 at 3:07 am
(514) Dawne says:

Hi Jane. I would advise you to ring your Doctors tomorrow and ask for a replacement of the alternative usrgently. Ask to have
“generic substitution allowed” on the script. The one easily available now is Synthroid. It wouldn’t be great to go without for 2 weeks. Others have tried and harder to come right and could be dangerous. Good luck. We all had to fight with our Doctors to get a change. Let’s know how you get on. It is an isolating feeling when you have to fight the so called professional isn’t it. It will come right though.

September 20, 2008 at 3:14 am
(515) Jane H says:

That would be okay, but we have a dreadful Doc shortage here and it can take up to three weeks to see a doc. So guess I should keep taking them, one of the lady’s I work with takes a natural Thyroid help supplement. Not sure what it is, but she seems to be okay. she won’t take thyroxine.

September 20, 2008 at 4:15 am
(516) Pauline says:

Hi Dawne & Jane H..
Been on the Goldshield (white [with a scoreline in the middle] 100 mcg) but have progressed downhill. See (486)I am going to try the new Synthroid tomorrow 1/2 a tablet as I just might have been overdosing on the Goldshield anyway due to the fact I have not been eating and my weight has fallen off of me!! It’s one hell of a way of going on a diet!!!! Hang in there Jane, we’re all with you. Thank goodness for Mary Shomon XXX.
Be interested to know what your friend’s taking in the way of Natural Thyroid Supplement!!

September 20, 2008 at 4:32 am
(517) Jane H says:

Hi Pauline,
I will ask her on Monday, and post it, very interested myself now that I have read so many nasty things about the one I am on. I will definitely ask, no demand that mine is changed on my next visit. Want to be normal again.

September 20, 2008 at 10:04 am
(518) jilly says:

Sylvia

Plenty of Hashi’s people are very successfully treated with WTE. The difference is that with hashi’s the thyroid is periodically attacked & dosage needs to be increased to get it under control. It is an individual process and may need more monitoring and trial and error. Doctors feel synthetics are easier for people with hashis, however those that choose WTE just need to be more aware of their bodies needs.

September 20, 2008 at 10:15 am
(519) jilly says:

Stella and Pauline, you have both made me think about my mother. Her legs started jumping (as she put it) in the late ’70′s not long after she was put onto synthetics – up till then she had been on natural thyroid, the dr just prescribed medication to calm it, now we know better, huh?? Sad to think of all the extra pills and potions she took – when now we realise she just needed the WTE, not synthetics.

Yes, on helltoxin, my legs jumped too – after they started to feel as if they were going dead or numb…. really uncomfortable and would prevent me from sleeping, until I got up and walked it off.

September 20, 2008 at 10:21 am
(520) jilly says:

Jane and Pauline

Natural Whole thyroid can be prescribed by your Doctor, but it is not funded, and it will be some time, if ever, that it is. We are going to fight for it to be funded – lets hope we win :)

It is produced by Pharmaceutical Compounding in Auckland, they are very helpful if you want to contact them and make inquiries.

I am on that now – and much prefer it to synthetics as I feel my body does not convert T4 to T3 very well.

September 20, 2008 at 3:58 pm
(521) stella says:

Hi Jayne
Like Jilly I do not think it is a good idea for you to stop taking your medication altogether (irrespective of the fact that it is causing you so much grief)
My GP is also hard to get into due to his workload, however instead of making an appointment with him when I decided to change from Levothyroxine to Synthroid, I arranged for my pharmacist to contact the GP and get the synthroid precribed. The pharmacy had no problem doing this for me.
Also I have a cousin in Auckland who has been experiencing the same problems as those set out in this blog – she was on Levothyroxine too – she got to her doctor within two days of becoming aware of the issues raised by us all and her doctor is “weaning” her off Levo over a two week period rather than just stopping taking it. He will then monitor her over a month on no medication, re-test her bloods, and determine what new medication she requires. She has cut down to taking her meds every two days in this weaning off process and has told me she has had the best health week over the last week that she has had in years.
I remember that when FIRST diagnosed with thyroid disease my doctor would told me that I would be on daily treatment for the rest of my life and I was most certainly told at that time that I could NOT stop taking the meds because to do so could cause me great harm. I would hate to see you stop taking anything and come to grief because of that. Maybe someone else in this forum can advise you on a better informed basis about discontinuing your meds.

September 20, 2008 at 5:45 pm
(522) Jane H says:

Thanks, Stella. I took it again this morning, felt like putting them down the loo. Am ringing the Dr’s nurse tomorrow and will nag till I get some joy. Or will see the Chemist as suggested. Wish me luck.

September 20, 2008 at 7:18 pm
(523) jilly says:

Hi Jane
Yes, I agree the sooner you are off them, the better. Some people (including me) did just stop taking them. However, I must say this was over 2 months ago and I was banging my head against a brick wall, even the endo I paid to see would not accept I had side effects, so the only way I could prove what I was saying, was to stop taking them.

I also have to add, that I still have my thyroid, and knew from years past, (when I forgot to renew my script now and again) that I would be OK for a couple of weeks not on them.

Now, it is different, we have fought and won – there is an easily obtained alternative, and if your Dr or chemist will not see reason, you know there are other’s that will. Therefore you should not need to take the drastic step I did.

If you have no thyroid at all – then you risk coma etc if you just stop taking the pills – even though you have side effects, the thryroxine in them is correct – it is the fillers/binders that are causing the problems. Think of being allergic to nuts, and eating a fruit cake – everything else is fine for you, except that darn nut.

September 20, 2008 at 8:44 pm
(524) Heather says:

Hi to everyone out there. I have been on thyroxin since 1984. Like all of you this has been the year from hell. My batch of the new tablet started in November. The awful headaches and flashing in my eyes the zig zag patterns and blind spots. I had small muscles around my left temple in particular that were in spasm most of time. I could relieve the pain a bit by pressing around my head where ever the pain was. Eventually after several visits to the chemist with all the similar stories that you have all told I decided to try something myself. As the body requires iodine and selenium to change T4 into the active T3 I got Lugols from the Clinician range and started taking one or two drops everymorning when I woke even before I took the tablet. I already eat 2/3 brazil nuts everymorning for my selenium. I already take a lot of supplements because I had a bowel cancer operation in 2003 that I have recovered from using alternative and natural products. Initially I thought the cancer may have come back into my brain because of the headaches. The lugols eased the headaches and because I’d been told the tablet was the same I tried to carry on. All the other symptoms began to surface. Finally I saw the article Terry put in the Tauranga Sun. That felt like hitting a wall as well as a big relief. Like the rest of you the story is the same trying to uncover all the lies, misinformation etc.
My dose was 25mcg daily so I decided after some asking why was I still taking it???? I STOPPED I immediately began to feel better. Now this is my situation and choice and I don’t reccomend that others take this path. What caused my hypothyroidism is questionable. I was on Depo Provera birth control injection for 12 years til I had a tubal ligation. At the time I’d had 4 children in 5 years and not getting pregnant was most important. The injection was NEW at the time and although I had awful side effects for about a year I never stopped. When I stopped cold turkey from the injection my hormonal system was whacked. My thyroid did what they call Postpartum reaction.It dumpped my thyoxin and shut down. So years later I’m finally finding out. Thankgoodness for the web and the help at our finger tips.
I have registered with CALM and have logged a medical adverse reaction with ACC as we don’t know yet what the long term effects will be. I do recomend that others do this. You ask your Dr for the form. I have also written a complaint with the Health and Disablitis commission. If you read the Human Rights listed on the phamphlet especially 4-5 and 6 are in violation.
I do think the meetings and support groups are very important.
I have other stuff to say but will stop here as I have said enough for now. Hope you make it all the way through.:-) A month ago I couldn’t put a short sentence together so I’m making up for it now.
Heather (If I do need to go back onto support I will use Whole Thyroid) I won’t touch synthoid again.

September 20, 2008 at 9:03 pm
(525) Heather says:

Heather here, 21st Sept.2008
Hi everyone, I have tried to log on here and it’s not come up so this is a test run to see if I have it right.
At the moment I am completely off all meds. and the bloods this past week were in the normal range. I was only on a low dose 25mcg so am hoping with taking natural support
supplements I can stay this way. I won’t write more til I see if this logs on.

September 20, 2008 at 9:20 pm
(526) jane H says:

Hi Jilly & Heather,
I still have my Thyroid,haven’t had the drink or surgery. Haven’t even been referred to an Endocrinologist. So am wondering if I would be safe to go off them for a couple of weeks until I can get into the Doc, sure would beat feeling this way. Am still going to ring the nurse tomorrow and see what they say. Can’t go on like this.

September 21, 2008 at 12:56 am
(527) Sylvia says:

Hi to everyone Thank you all for your help, Very much appreciated.
Had an absolutely terrible night the other night and refused to take anymore.Went to my GP who is wonderful we were both reading through faxes and information she had there and she was happy for me to go on whole thyroid which has made a difference already. My heart goes out to you all who have non sympathetic doctors.It is such a funny disease with still alot not known about it ,I think some of the doctors put it in the too hard basket and prescribe something to shut us up.Keep on fighting! Would love to see whole thyriod funded is there a petition to sign?

September 21, 2008 at 4:54 am
(528) JAS says:

My new GP knew all about the problems with Eltroxin, thanks to several of her patients having already reported their symptoms, so as soon as I started telling her how I was feeling, and how it had worsened since my last dosage increase, she said it sounded like Eltroxin is the culprit.

We talked about my symptoms, my health in general and what to do next. My blood pressure is up, yet again (a year ago it was normal, and had been for several years, but every check since has shown it to be elevated to some degree), which, in all likelihood, is just another sign of my body being under attack from Eltroxin. However, as there could be another underlying cause, my GP’s had me undergo a whole raft of blood and urine tests, just to be on the safe side (and she’s checking my TSH again, plus my calcium level).

What she hasn’t done, yet, is take me off Eltroxin – although I have dropped the extra 50mcg I was taking twice a week. She wants to wait for the test results, wait to see what gets subsidised by Pharmac and get more info on all the alternatives before she prescribes anything new (I have Hashi’s and she’s not sure whether WTE or Synthroid would be the better option).

So, possibly another 4-6 weeks of taking Eltroxin, which isn’t ideal, but there is light at the end of the tunnel. And it felt good to speak to someone informed and sympathetic, and to be taken seriously – especially after the crap I got from my previous GP.

September 22, 2008 at 7:17 am
(529) Heather says:

Hi again, One thing I thought to add to the previous about what I’m still experiencing. I’ve stopped the Eltroxin and the bloods last week Tues. showed normal levels except for the White cell neutrophils which are quite low. This is where Claire suggests the Autoimmune reaction could show up. The Dr also mutter something about it too. He asked if I had been sick which was hard to answer considering how bad the Eltroxin made me feel. I’m still getting odd reactions in my body. My waking body temp. is 35.8 so it is always a slow start to the day. I take the drop of iodine when I wake.
I still have pain in my joints, my lymph glands go up and down round my ankles and behind my knees. My weak muscles and fatigue comes and goes. I walk everyday to try and loose the weight I’ve put on but if I go too far then I get exhausted and my joints get worse instead of stronger. Someone asked about the rosae?? on the face?? Yes I looked at my face sometime ago and thought it was strange as I never get that. That is worse some days than others. I still bruise easily on my hands so started taking Vit E and C to try to strengthen my skin. It just seems to be one thing after another. The last couple of days have been down days after feeling quite excited about getting off the thyroxin for good. It still feels like a roller coaster ride. The most wonderful part is having my head clear and being able to think straight again. At the moment my body hasn’t caught up. Oh an interesting thing too. I like to sing and belong to the Country Music Clubs. My VOICE has come back!! It is soooo good to have something positive to say about how I’m feeling. I am going to try some detox to try and get more of that stuff out of my body. Has anyone tried the herb Macca?? It helps to balance the whole endocrine system.
It is also very helpful to talk to each other like this.
I am so pleased to hear of women standing up for themselves, there are so many still out there who can’t, too afraid or too much in the fog. Keep it up everyone, don’t let them bury it.

September 22, 2008 at 8:04 am
(530) jilly says:

If you want to help us get whole thyroid funded, help us fight for recompensation, help us inform other that have not yet heard, help us get more doctors and chemists informed, and find out what is happening, please email pat.jones@kinect.co.nz

She can add you to our mailing list and also send you a questionaire. She is compiling all the information we can gather.

Government should be announcing this week when an alternative will be funded. It will be synthetic. We have yet to convince them to also fund WTE – one step at a time. :)

September 22, 2008 at 6:32 pm
(531) tasha says:

heather (513), I too was on and off depo since forever and have often wondered if it was because of that i went to hypo… i came off it in 2006, sick of the ideas of chemicals in my body everything went downhill from there on in… I had 3 children in under 5 yrs and wonder if i over stressed my body too…. am keen to get off all medication and if you have any advice would be keen to hear it…

September 22, 2008 at 6:36 pm
(532) tasha says:

for my saviour jilly… i know that you are on whole thyroid and i would like to ask you some questions regarding it… Do you have to take your temp every morning, and how often do you have to go for blood tests….. who advises you to up the dose or is it self done??? much appreciated tasha

September 22, 2008 at 7:28 pm
(533) jilly says:

Hi Tasha

*Smiles* I have never been called that before, but am glad I can help.

I have been on WTE for just over a month and am due for blood tests now. My doctor actually knows very little about thyroid problems and had never heard of WTE before. So, I have been following the process outlined by Pharmaceutical Compounding (they have an excellent website, will send you an information pack, and will talk to you on the phone… although I have never rung them, I know others that have, when they are having problems)

Yes, I have been taking my temperature each morning – and it has been very interesting, I never realised I was so low before. I am now stable at 36.5 roughly, but have some symptoms still, hence the blood tests as I may still need a small increase.

It is lovely to be in control on one’s health, within reason. I am learning my body’s needs and will be able to increase or reduce the dose as needed. If you search this site, you will find excellent articles about that. For example there are different needs between summer and winter.

Once I am fully stable and know what amount I need, I will only take my temperature 5 days a month, just to check it :)

September 22, 2008 at 8:05 pm
(534) Heather says:

Hi Tasha,
Yes I do think there is a link for some of us who have used Depo Provera to having our thyroid crash after going off it. To know more of the side effects Google Depo Provera and that will make your hair curl all the stuff they never tell you. Also check out Postparum Thyroiditis which is a condition many women experience after having children and especially like you and I several close together. Neither you or I have had our thyroid taken out or radiated so there is always potential for it to be assisted to rebalance and function normally. Also if you have not been offically diagnosed with Hashimoto condition then do try these supplements. The body requires iodine for the thyroid to make T4 and then convert it into T3 which is the active part. I use Lugols every morning and this could react with your tablets as the thyroid may try to make it’s own T4 then you will feel overdosed. I also take selenium which is essential in the conversion process. If you look at Thyroid support supplements at the health shop you will see what the body needs to do all this it’s self. I got myself muscle tested to see what my body needed.
Yes many of us over the years have fiddled and altered our tablet doses to try make it fit to what feels better.:-) Most Synthroid has a half life of 7/12 days to clear out of the body which is why I stopped altogether to get it out of my system and was intending to do on Whole Thyroid. When the bloods came back normal I simply stayed off taking these other things to help my body rebalance. The other thing I take is a herbal called Macca. You can google that too. It has NO hormones but balances the whole Endocrine system which may be all you need. You could muscle test for that to compare it with a Thyroid support supplement. Everyone is different and your body will soon tell you. If you truely believe that you want to be off all the medication then become an expert with all the infomation then you can decide what is best for you. Like you I deeply want to be medication free. I’m prepared to give it my best shot and be responsible for the results. I’m not silly and do realise that I may have to compromise. I don’t buy into the fear and some of the comments that the medical randomly fling around. I trust my instincts totally, that’s what women are very good at.
Remember most of the Dr’s are men!!!!
I do congratulate the men who have also called into this forum as they have just as many terrible experiences as we women have. They are a minority which makes it even harder. I will get in touch with Pat thank you Jilly for the e mail address. I do think the statistics they are using are a joke as there are heaps of women who have still not registered with CALM. It is good to know what the total number possibly affected could be 70,000 WOW we are the tip of the iceberg!!! Yes I do have a friend who feels she is not too bad on the Eltroxin and is not making a fuss. I must admit she is the last person to get foisty just put up with it and think it is OLD AGE.!!!!
Love to everyone – Keep up the chatter :-)

September 22, 2008 at 8:21 pm
(535) jilly says:

Sigh, Heather, I also know of women who are in their 70′s ans 80′s who believe their Dr and are putting it down to other things in life, it is so frustrating to know they could feel so much better, and not be able to convince them.

I have had a thyroid deficiency since I was 15, it runs from both side of my family. Both sides are several generation Kiwi’s and from my reading, I now wonder if this has been generational because of the low selenium in our soil, just pondering. It did not affect my brothers, but one has a daughter with hypo.

The tests they did on GSK eltroxin over a 48 hour period showed that 25% of the test subjects got side effects. Yes, one wonders why they released it on us, knowing that. However, it also shows that at least 25% of the 70,000 people on it will have side effects – and as the test was only over 48 hours, there will be more. My side effects were slower coming than that.

September 23, 2008 at 3:42 am
(536) Jane H says:

Yeha, rang the doc’s nurse yesterday and told her I was going to stop taking the Levo for two weeks to see how I felt, for my own piece of mind, and the doc rang me today and told me to stop taking them for a month and then he would call me for new bloods. So at least I will know. I have been taking pain killers every two hours today to get through the day without too much pain (is all in my joints) but would so love a whole night’s sleep. that would be so good. I was so pleased and so glad that he listened and understands. Smiled for the rest of the day.

September 23, 2008 at 6:46 am
(537) Angela says:

Hi Jane
sorry to sound like a broken record but have you contacted CARM (centre for adverse reactions) we need everyone with sideeffects to do that. also the thyroid website
http://keenkiwi.orconhosting.net.nz/index.html
has so much good information and contact details on it.

September 23, 2008 at 6:51 am
(538) Angela says:

Hi jane
i dont wnat to sound like a broken record, but have you contacted CARM centre for adverse reactions. also our thyroid website
http://keenkiwi.orconhosting.net.nz/index.html
has lots of good information and contacts, also a forum for questions.

September 23, 2008 at 11:02 am
(539) jilly says:

Jane, it is so good that you have your doctors support, but I bet you won’t need a month to feel the change. :) I reckon within a couple of days yu will feel better.

Make an appointment in a week (or less) and ask for an alternative, either Synthroid or WTE.

September 23, 2008 at 6:54 pm
(540) Dawne says:

Hi Pauline. Just a catch up to see how you are going on the Synthroid. Hope things are improving for you.

September 23, 2008 at 9:02 pm
(541) tasha says:

hi was asking pharmacist bout synthroid yesterday and she says should be in within next 3mths and that levothyroxine is been taken off the market so that synthroid will become the only synthetic thyroid medication available… has anyone else heard this

September 23, 2008 at 9:47 pm
(542) Dawne says:

I wrote to Pharmac a couple of weeks ago over my concern with having a Talc allergy and they wrote back to say they hope to make an anouncement by the end of this month but couldn’t say when it would be available or which one. Do hope they have an alternative too.

September 23, 2008 at 11:30 pm
(543) Pauline says:

Not good (as we speak). I am really suffering from very bad restless leg syndrome at the moment and it appears to be associated with the synthroid. So I’m not sure what the next move is. My husband and daughter is off to see my GP later on this afternoon to try and convince him to prescribe WTE. I am still losing weight, mainly because I just can’t eat anything, I feel so physically sick!! Will see how things go with my GP!!

September 24, 2008 at 2:06 am
(544) Jane H says:

Hi guys,
Great to hear your comments and will check out that site after dinner. Went to our chemist today, here in good ole Hawera and asked about replacement tabs. Was told there would be something within the next 3 – 4 weeks, but not told what. Thank goodness. I am taking pain meds every two hours to keep pain at bay so I can function, hopefully not for too much longer. So long to be able to move like a normal person again, not shuffle like a 90 year old. Have had x-rays and bloods done, other Doc thought I may have Rheumatoid Arthritis now. I so hope not. Nasty. I am so glad though to be off the Levo. You guys are fantastic, thankyou so much for your replys, I really appreciate it.

September 24, 2008 at 2:33 am
(545) Jane H says:

Me again. Have checked out the site, printed and filled in the forms and will post tomorrow. I am proud to add my voice to yours. thanks heaps and hopefully I will feel better soon.

September 24, 2008 at 2:56 am
(546) rosiekins says:

Tasha = a phamacist who said levothyroxine is being taken off market – go to another chemist who knows what they’re talking about!Absolute nonsense! Levothyroxine ia ONE ingredient – the active one – in ALL the different brands.Its T4 and we break it down to make the T3 we MUST HAVE. What is different in the different brands are the other ingredients used to make the levothyroxine into a tablet – no 2 companiese use identical combos of these binders and fillers (called excipient. So you may be okay on one but not another. BUT again they all contain levothyroxine.

September 24, 2008 at 3:08 am
(547) Angela says:

Hi Jane
i really was a broken record. the message didnt look like it had gone so i re wrote it after it didnt show after refreshing the page. Thanks for sending the forms off. I have had heaps of phonecalls and letters from distressed people. yesterday my aunty rang me and said her friend had been rushed to hospital too. I am extremely concerned that they have not recalled the tablets yet. I see Jackie Blue has put more questions to parliament today.

September 24, 2008 at 4:36 am
(548) Jane H says:

Hi Angela,
Nah, you aren’t. I’m glad to add my name to shout out with yours about this awful stuff. Can’t wait to post tomorrow. Can’t believe it has still not been taken off the market. Incredible. We will win. All you girls are amazing women and have been a great help to me. Especially knowing there are others and I’m not alone. Thanks so much. You’re all the best.

September 24, 2008 at 5:07 am
(549) jilly says:

Jane – together we are strong, separately we are not heard – thank you so much for giving your strength :)

September 24, 2008 at 5:51 am
(550) Kim says:

I have questions and this seems to be a place of knowledge for this sort of thing…doctor and pharmacist both have managed to confuse me on the matter (not hard at the moment lol). My doctor has acknowledged that indeed Eltroxin may be the cause of my on-going unwellness over the past year and suggested that I ask pharmacist for alternative when I get my script filled. Pharmacist has informed me I can get synthroid (cant spell sorry) but this may be different from the one pharmac will replace eltroxin with and therefore changing now would cause further unnessary adjustment period which will then need to be repeated in a few months when new substitute arrives. Both doctor and pharmacist have made it very clear that taking nothing is not an option as my thyroid was completely removed I would “crash and burn”. Do i kept taking this Eltroxin until pharmac get sorted? I feel that “crash and burn” has been and gone. Can not taking anything actually be worse???

September 24, 2008 at 9:12 am
(551) John says:

Hello All;

Just to let you all know that my wife Pauline (532)and (previous) is in PN Hospital with kidney failure plus a couple of other things that are not working right in her body. If there is any info I can collate which points to Eltroxin as the source of this particular problem, then I’d like to hear about it.
Thanks guys, you’re doing a great job.

September 24, 2008 at 1:01 pm
(552) jilly says:

Hi Kim
I have heard that Pharmac and Medsafe will be making the announcement today – but lets not count out chickens, just yet.

Whilst the Dr and chemist are correct, in that the subsidised alternative may not be synthroid, it may well be. They are not the ones having to cope with the awful side effects.

If I were you, I would see what (if anything is announced today) and then decide which is worse – two adjustments periods, or living with the side effects??? They are assuming your body will need to adjust – if you read all the comments above you will find many people have changed medication and the only adjustment needed – was getting used to being healthy again.

You MUST take some form of medication, no doubt about that.

Please, please send a report to CARM if you have not already done so.

September 24, 2008 at 1:51 pm
(553) jilly says:

John, that is terrible news, I am so sorry to hear that :(

You may have a tough time convincing them it is the ELtroxin, but here is some info I have found.

As you will see in the comments above, kidney related problems have been mentioned, however you will need factual proof.

I have just spent an hour searching, because I know I have seen somewhere this being a problem. I am going to contact a friend (fountain of knowledge) and ask her. I’ll get back to you asap.

September 24, 2008 at 4:05 pm
(554) John says:

Hi Jilly;

Thanks for that. I’ll keep you all posted as to the outcome here, but if there is anyone out there has any sort of proof that Eltroxin is to blame, I’m ready to hang someone for it!! A year ago Pauline was a pretty active person and led a comparatively normal life on the medication she was prescribed at that time. To be brought down to this is very hard for us and the family – all for WHAT!!!!>???

September 24, 2008 at 5:02 pm
(555) Dawne says:

Hi John, So very sorry to hear about Pauline. I was like her and kept losing weight all year so was interested in her struggle to come right. I was wondering if Pauline was one of us who sent her full blood tests to Claire as I did. If so she would be the best person to contact as she rang me after receiving mine very concerned about the raised liver enzymes result. Claire is also on Pat’s news list and has sent a number of emails concerning the tests. She would be able to tell you if it was a common thread with us all as I know the white blood counts were. Because of her call to me I have read up a lot on raised liver enzyme levels and the kidneys are all tied up with them as well. I can’t drink on account of having a total removal so it’s not alcohol causing my raised levels. I have Claires contact number and if you would like to confirm on this site that it is your name on Pat’s list I will send it to you via that. Hope this helps.

September 24, 2008 at 5:49 pm
(556) John says:

Hi Dawne;

Yes we’re on Pat’s list, Manawatu region. I’ll see what I can find out and report back.
Thanks again to all you gals (and guys) out there.

September 24, 2008 at 8:31 pm
(557) jilly says:

Hi John
Seems that link i put on was removed, dunno why.

Anyway, Tracey agrees – there was something, but we have yet to find it. A agree, Claire or Pat may know – so what a good idea to contact them. Was too early for my brain to think of that.

Here is what Tracey has sent.

Have found some links that may be useful
http://www.netdoctor.co.uk/medicines/100002574.html
use with caution in – Rare disease where there is a problem with the kidneys that causes large amounts of dilute urine to be produced (diabetes insipidus).

and

http://en.wikipedia.org/wiki/Levothyroxine

Levo metabolises mainly in liver, kidneys, brain and muscles

“Quantitatively, the smooth endoplasmic reticulum of the liver cell is the principal organ of drug metabolism, although every biological tissue has some ability to metabolize drugs. Factors responsible for the liver’s contribution to drug metabolism include that it is a large organ, that it is the first organ perfused by chemicals absorbed in the gut, and that there are very high concentrations of most drug-metabolizing enzyme systems relative to other organs. If a drug is taken into the GI tract, where it enters hepatic circulation through the portal vein, it becomes well-metabolized and is said to show the first pass effect.

Other sites of drug metabolism include epithelial cells of the gastrointestinal tract, lungs, kidneys, and the skin. These sites are usually responsible for localized toxicity reactions.

and

this is the Eltroxin data sheet straight from GSK

http://www.gsk.ca/english/docs-pdf/eltroxin_pm_09132005.pdf

Excretion

Thyroid hormones are primarily eliminated by the kidneys. T
4 is eliminated slowly from the body (see Table 3), with a half-life of 6 to 7 days. T3 has a half-life of 1 to 2 days.

Not sure if that helps, but will keep searching. Hugs to you and Pauline.

September 25, 2008 at 3:34 am
(558) Jane H says:

Hi All,
John, I don’t know you or Pauline, but am saddened to hear the news. The best of luck to you both and hope you find an answer. I posted my papers off to Temuka today and e-mailed Pat with the e-mail version. I’m still struggling to get through the day and taking far too many pain killers to function. Hopefully I will feel better soon and our voices together will sort this company out. How dare they play russian roulette with our lives. It is disgraceful.

September 25, 2008 at 4:14 am
(559) jilly says:

Hi John
I did post more stuff earlier today, seems for some reason it didn’t load. It may be the websites I gave.

We can only find things that say how the T3 is related, and anecdotal evidence. I have read through the posts on the trademe discussion, and there are quite a few saying they have kidney pain, or kidney spasms. One woman is passing blood, so is being tested – it does make one think there is a connection – but proving it will be tricky.

I agree – with the suggestion to contact Pat and Claire – they hold alot of our information.

Good luck and I hope Pauline is recovered soon. If I find anything – will post it here

September 25, 2008 at 6:18 am
(560) stella seymour says:

Pauline
Restless leg syndrome – I have been off Levothyroxine since 10 September 2008 and taking Synthroid since 12 September 2008 – I have kept a daily diary noting all “strange” things that have occurred since starting Synthroid and all “bad” things that no longer plague me since I stopped the Levothyroxine.
Funnily enough the restless leg (worms in legs) started again two days ago as did the feeling that my heart is thumping so loudly that others can hear it – I most certainly can. Also within about 20 minutes to half an hour after taking the Synthroid I am getting a feeling of heat inside my lower right hand quadrant just to the right of my pubic area and just above the top of my right leg. It feel as though I have a small hot water bottle inserted under my skin in that area – no pain just hot feeling. I also had this heat sensation daily while on Levothyroxine but it had stopped until several days ago when it returned. Has anyone else experienced this heat sensation in the lower right hand quadrant?

September 26, 2008 at 12:20 am
(561) tasha says:

for rosiekins of (535), i may not have had the grammatically correct phrasing ?description of words, however i do have the right sentiments…… One does not have to be so pedantic

September 26, 2008 at 12:24 am
(562) tasha says:

for heather of (523)… you have got me really interested in what you are saying and i would love to know more…. i went on depo in early 2005, came off in sept 06…. my first child born 99, last one in 04….. midway through 06 i started putting on the weight and having always been a steady 45kgs i knew something was up…… i thought it was the depo and went off it immediately….. i am wondering if i can now reverse it and resume normal health…. your help would be greatly appreciated… I won’t be on here for a while (school holidays woo hoo) but could you email me @ celticgaelic79@gmail.com i promise to get back to you as soon as the wee lil angels return to school… much obliged

September 26, 2008 at 9:54 pm
(563) rosiekins says:

Tasha – chemists DO have to be pedantic and absolutely accurate in what they tell people -it’s their professional and legal obligation and for obvious reasons. May not apply to the conversation you had but so many have been given wrong and misleading info in this debacle and suffered longer than they needed to as a consequence. If you have a pharmacist you trust, good – others have had their trust shaken! Just didn’t want you to be one of them!

September 27, 2008 at 12:13 am
(564) Jane H says:

Hi all,
How is everyone. In myself, after being off the tabs for 6 days now. I feel good. Even sleeping a wee bit better, but that could be due to the panadol and neurofen I take 2 hourly to keep the pain at bay. Still no let up in the hand swelling and joint pain. Will know Monday if I have Rheumatoid Arthritis. Am due to see the Orthopaedic Surgeon on Wed for a possible knee replacement. I so pray this doesn’t affect that. I want to be my age again. Not 90. Has anyone else had swollen, sore fingers and wrists?

September 27, 2008 at 1:46 am
(565) Dawne says:

Hi Jane. Yes I had the sore swollen finger but mainly in one finger on left hand. Quite odd as thought it was in the joint to start with but realized it was more a muscle swelling. My wrists became very weak and painful at times which made even picking up the kettle difficult. Seven weeks off it and still get the occassional problem but nowhere as bad. Was so bad when on that pill the pain in the hand would wake me and keep me awake. My ankles also went weak and painful for a while back then. Only the finger now that bothers me at times.

September 27, 2008 at 2:10 am
(566) Jane H says:

Hi Dawne,
Darn, I have both hands and wrists, sore and swollen like sausages. Find it hard to pick things up, no strength at all. I’m getting extremely angry, furious even at those people who for the sake of probably cutting costs have caused all this to us. I am thinking i may have to give up my job, that I love, because I have so much trouble using my hands which is a big part of my job. But still need to have the money coming in. Any ideas anyone?

September 27, 2008 at 2:20 am
(567) Dawne says:

Hi Jane, It’s early days yet.Some are noticing no difference for a couple of weeks after changing to the alternative. I do know a lot of us victims have been so bad they have had rheumatoid tests done and results have come back okay. Hope you do too. It can take up to 3 months for the worst of the symptoms to go and my hand is nowhere as bad and really only troubles me occassionally now. I was getting concerned as seemed to be getting lumps from side of knuckles etc but they have gone down now. Do hope yours come right before too long.

September 27, 2008 at 2:34 am
(568) Angela says:

as far as i know my mothers rheumatoid tests were fine, although doctor keeps saying its rheumatism and normal when you get old. she has very mishapen and swollen fingers which has happened since being on the ‘eltoxin’ and now noticing little hard lumps, bumps on her shoulder and feet, that werent there before.

September 27, 2008 at 2:42 am
(569) Dawne says:

Hello again Jane. Are you aware that pain killers along with some health supplements and medications alter the strength of your thyroxine pills. They say to wait up to 4 hours after your morning dose before taking aspirins etc but I have always found that even later in the day I can feel a drain of energy when I have to take a pain killer of any sort. I guess for you this will be difficult with the pain so bad. Maybe it could be the reason your new pills aren’t kicking in properly yet. Just a thought.

September 27, 2008 at 2:46 am
(570) Jane H says:

Hi back,
Thanks so much. You really are saviours, you know. I am sitting here with tears, having a wee pity party, how silly is that. I will hope that it is the same with me. Wish me luck. You guys are amazing and I thank you for your support and for talking to me. Honestly, it really is awful to feel so alone, with lots of pain and wondering why. I come to this site as often as I can as it is the ‘Hope’ channel. You’re all fabulous. Thankyou.

September 27, 2008 at 2:51 am
(571) Dawne says:

You are very welcome. Stay strong it will come right. It is such a consuming sort of thing to have happen to you then have to try and find the cause as well no wonder we all get worried.

September 27, 2008 at 3:07 am
(572) Jane H says:

Hi back,
thanks heaps. I will sure do my best, I guess we all have the little lapses, and feel bad and sad. I shall go cook dinner now. Cheers and bless you.

Also, has anyone heard how Pauline is doing?

September 27, 2008 at 4:18 am
(573) Angela says:

Jane
from me too, hang in there. it will get better and we WILL get to the bottom of it. I am in for the long haul to get some truth. I feel strongly that these tablets need to be recalled. I am very fortunate that i have not personally had to take them and never would after seeing first hand so many people suffering. i am on goldshield. Jane never stop talking, we care and if we can be of any help we will. are you on Pats emailing list now? Take care.

September 27, 2008 at 6:40 am
(574) Jane H says:

Hi back,
I e-mailed the forms I filled out through to her, but haven’t heard back yet and sent via post the hard copies to the Pharmacist in Temuka. So hopefully I am. Did I have to do anything else, wasn’t sure?

September 27, 2008 at 4:20 pm
(575) John says:

Hi All;

Pauline appears to be coming right, as far as the Thyroid meds are concerned she’s on one and half a day [Goldshield]. She is also eating comparatively well again, as opposed to a sparrow’s breakfast. I think she’s eaten more in the last couple of days in hospital than all the previous month combined!! She has been having anti-nausea jabs to help, i understand she is now on pills for this. I am going into see her today so will get back to you. She certainly looks a lot better than she did a few days ago. There is no way she could have gone on the way she was. Her restless leg syndrome is still bothering her a bit. I think the hospital is also trying to address that as well.
Looking at the forum you guys have certainly moved on since I last looked. This must be about the most active forum on the Internet! (except possibly the Trade-Me site)!

September 27, 2008 at 4:52 pm
(576) Zoe says:

Hi Jane, things will get better!! So hang in there. My knees were so bad I couldn’t do my stairs in the morning, I couldn’t hold a cup in my left hand it was so weak and painful, Also had the finger thing. I’ve been off the poison since mid July and am now walking 50 minute walks up and down hills. The pain will go..I just hope it hurries up for you

September 27, 2008 at 5:19 pm
(577) Zoe says:

Jane its me again! Just thinking, when I was at my worst I started taking Glucosamine and found that gave some relief, a friend of mine in the same predicament did the same. I also drank lots of herbal teas to try and flush my body, and went to a colour therapist to try and assist the detoxing process. I was also helped a lot when I got a magnasleep on my bed. Hope some of these may help you. Oh yes I had the arthritis tests and all came out fine. Good luck.

September 27, 2008 at 6:18 pm
(578) Dawne says:

There’s a very interesting experiment going on on the trade me site. I tried it. Place one of the GSK pills in a saucer of water and see how long it takes to dissolve. I just did it and it fizzed and broke apart immediately and within 8 to 10 minutes it was just a very fine powder. Someone tried it comparing it with the old eltroxin and that took a long time and kept it’s shape as it dissolved. Such a simple test why haven’t all the so called scientists come up with it. The man of the house has just said if warm water was used to emulate the warmth of the body it would go much faster. Proof of the binding wouldn’t you say.

September 27, 2008 at 10:13 pm
(579) Jane H says:

Hi guys,
Thanks so much, you honestly give me the hope I need. I have been taking Glucosamine for some time now, for my knee and also have a magnasleep. I am going to try the green tea, its very good for you I’ve been told. I am not on any Thyroid meds at the moment. Doctor taken me off them for a month, and then I will have more blood tests. Still have the gland, so guess it is a bit safer for me than if I’d had surgery or the drink. So I will keep on keeping on and I too, am in it for the long haul. I wish to see hands smacked good a proper for the trouble this has caused us all. Has anyone heard if it is off the market yet?

September 28, 2008 at 12:01 am
(580) Angela says:

there is a public meeting to address some of the problems we are having with the subsidised eltroxin and also to educate us more on thyroid issues. Saturday Oct 4th
for more information
http://kiwithyroid.19.forumer.com/viewtopic.php?t=65

September 28, 2008 at 3:49 am
(581) Angela says:

John
I am so pleased Pauline is feeling a little better. Have you let the hospital know about the eltoxin issue? Did they change her to goldshield? Tell her we are thinking of her and wish her a speedy recovery. My uncle had a prostate op recently which didnt go at all well. he had a blockage and had to have another op later, his kidneys not emptying properly and still not quite fixed. he has also been diagonosed with diabetes at the same time. he is still on the eltoxin.

September 29, 2008 at 3:04 am
(582) John says:

Hi Angela and All;

(Hopefully)x2 Pauline will be out of hospital tomorrow as long as her Creatine level drops below a certain value (which shows her kidneys are coming right). Yes the Eltroxin issue did rear it’s ugly head a couple of times in the hospital. Thankfully Pauline had the Goldshield with her and has enough to last, (she is on one and a half at the moment). I think she runs out tomorrow. I do have a supply of Synthroid waiting in the wings just in case. However I still maintain all this hassle was due to that accursed Eltroxin to begin with. I am sure that Pauline (and probably the rest of you guys and gals out there) would have been better off if they hadn’t frigged around with the medication to start with!#$%^&*()!

September 29, 2008 at 3:36 am
(583) Angela says:

Hi John
i am so glad about that, give her a hug from me. John have you added your name to pat jones email list. we are going to do something to get some answers on this and can do it better as a group. my mums creatine levels were high but i never realised that until she was home from hospital, we requested all her blood tests from december. her sodium levels were dangerously low. carm had 1137 adverse reactions reported on friday. that is only the people who know to report them. every day i hear of more and more people getting sick, no one knew who was on thyroxin before this all happened, and people have been taking them for over 30 years. i hope they make both goldshield and synthroid an option as one size doesnt fit all. my mum is dreading having to change to another option after coming right on the goldshield.

September 29, 2008 at 4:34 pm
(584) Dawne says:

Hi John. What good news about Pauline. Have been thinking of her. My liver and kidney tests were found to be all over the place with my blood tests. Also it seems to be known in the hospital here that Goldshield will be available later in October as an alternative. Jackie Blue made inquiries yesterday as to why the media release hasn’t come out yet and was told should be mid week. hope they meant this mid week!!

September 29, 2008 at 11:29 pm
(585) John says:

Hi Angela, Dawne and all;
Not quite as good a news as I’d like as Pauline will be in hospital for a couple/few more days yet due to the creatine level not being where it should be. I’ve taken in her new medication for thyroid and made it known to the ward staff that thisa is the stuff she’s taking for her Thyroid. They did try to put her back on the bad stuff, I don’t think anyone looks at the news in the medical profession. They seemed to be totally blind to what’s happening in the real world of the thyroid.
At any rate Pauline’s looking a lot better than she did last week-end. I think she went into shock. She’s had litres of liquid pumped into her. I think she’s had 6 of those big bags of saline and 3 of blood of a variety of capacities.
Yes we are on Pat Jones’s list!

September 30, 2008 at 12:42 am
(586) Dawne says:

Hi John, Hard to believe a big public hospital wouldn’t be aware of the change of meds. We only have a few beds community hospital and they were notified last week of the change coming. They are going to have to get there acts together fast and a lot will be left with egg on their faces yet. I thought the press release today very ambiguous and carefully worded somehow. Obviously no sign of admitting they were wrong YET.

September 30, 2008 at 2:38 am
(587) rosiekins says:

Medsasfe are in the process of approving Goldshield (receiving submissions etc) and hope to have a shipment available from early November. This was an officially announced this morning! Hang in there all of you – I hope this will help all of us. Something positive and definite at last.

October 1, 2008 at 3:00 am
(588) Gabriella says:

living in a third-world-country, I´m very surprised about lot´s of comments in this blog: Is it o.k., that the people in this 3.world-countries are getting low-grade medicines and so called first-world-countries
seem to have the human-rights + more to get the “creams” of medications?
It does sound to me like this….
Here in Zimbabwe Eltroxin (GlaxoSmithKline) is the ONLY medication available for hypothyroism. I am taking 0,15 mg since 6 years + ´am grateful feeling well.
So do all other people I do know being on this medication. Here is NO insurance paying for our tests or medication, most of us are simply happy that there IS a medication.
Are we less human-beings, do our lives not count, or why is it o.k. we are getting this “low-grade” medication (or none)+ in your countries this medication should not happen?

October 1, 2008 at 7:01 pm
(589) Dawne says:

Hi Gabriella, I agree with you that it isn’t fair that some countries get a choice of the best medication. Unfortunately like you we don’t get that choice either. We also have only had the one choice for thyroid problems and that’s the reason for our fight for an alternative. Late last year the formula of the GSK eltroxin here was changed to Levothyroxin formula with a completely different binding for it. We were not advised about this and those of us who enquired at the time of the change were only told it was exactly the same just made in a different country. Over the months hundreds of us became very ill so much so in fact many of our lives becamse just a battle to get through the days. When word started to filter through the media it was then a group got together to pressure the govt for an alternative. This we seem to have achieved but it is not available yet. We are lucky in New Zealand that we are able to contact members of our Parliament and two members of the opposition parties fought for us in Parliament along with others in the media. It is a misconception that we are a wealthy people here. Very few can afford medical insurance and it has been a struggle for many of us to find the money to pay for the alternatives brought into the country for us. It is worth it though to be well again and to get rid of the shocking symptoms of a medication that was not working for so many of us. Many have been hospitalized and many are still unaware of the reason for their ill health. That is the message we are trying to get across now. When you are too tired to get through a day, so dizzy you have blackouts, your thoat is so raw that your voices go, all this and many more symptoms prove that we aren’t complaining for no real reason. Many people had to pay for their own tests as our hospital system is so overloaded that the wait to have anything done through them can be many weeks and even months. It is only the fact that in our country we can speak up and be heard that has made this result possible.

October 2, 2008 at 12:50 am
(590) Louise says:

*crossposted*
Goldshield in Auck? Hiya Anyone know of a phcy with GS in Auckland, I am desperate – had 1 month on GS and was on the mend, now on Synthroid and feel like I am slipping back into the fog – very unreasonable and teary. Heeeelpppp.

October 2, 2008 at 1:40 am
(591) Gabriella says:

Thank you Dawne! I did the water-test, our 100 had been yellow before, the new ones are white and fall apart, so, the pharmacys give the 50 microgramm whole tabletts, since it is now quite impossible to half the 100´s. So, I have never seen the packet or container, because the pharmacist counts out my supply, which I get in a little plastic-packet. I fished the Information about ingredients a.s.o. out over internet.

What you are doing will help in the end everybody in the whole world, because the awareness for thyroid-disease becomes surely hightened. I thank you all for this!

I think because of our overall-problems in our country, each day is a struggle to survive here, I can not really concentrate on the side-effects: life in general here has got to many down-side-effects, so, I would anyway not know, if they come from standing the whole day in a queue to get my money out of the bank or some mealie-meal for my family from random seldom deliveries a.s.o., all the symptoms you describe above, I could put down here under general daily stress surviving, I believe….

…maybe coming along your blog is a wink from fate to get more involved with this disease here in our country + medications in general.

We have got hope now to turn from dictatorship into a progressive state of democracy, which will enable us to speak up for ourselves.

At the moment I´m to scared to reveal my findings about your blog to anybody else, because there would not be any other alternative. Often the pharmacys are short in medications anyway and I think I´m lucky not to need diabetis or HIV medication.

Keep your good work up, please! I´m sure it will finally filter down to us here, too!

It just made me somehow more depressed, when I read in this blog, to have another problem on top of everything else and the big question: how to cope with this also…. + some comments sounded, like it is perfectly alright, that the bad medications get shipped our way.

October 2, 2008 at 1:42 am
(592) Angela says:

John
how is Pauline?
Jane
how are you?

October 2, 2008 at 1:53 am
(593) Dawne says:

Gabriella, not everyone is being affected by the new meds so hopefully you are one of those. Some people found it helped to wait at least 30minutes after taking it,quickly witrh plenty of water, before eating breakfast, to give it time to act. I do hope things improve for you all in the future.

October 2, 2008 at 2:23 am
(594) jilly says:

Yes, Dawne – not everyone is reacting badly. It must be taken on an empty stomach – no food or other medication for at least an hour, and with some other meds – 4 hours gap. It has also been found that they dissolve way too fast, so it may help to wrap something around them that will dissolve in the stomach rather than your throat.

October 2, 2008 at 2:33 am
(595) jane H says:

Hi Angela and all,
I am ok. The arthritis tests came back negative as you all said, the bloods as well. just my rheumatoid count is up to 18, but nothing to worry about according to James’s sis, who is a nurse. I am keeping on keeping on, tired, and still have swollen aching fingers and wrists, not sleeping well. I feel good in myself, just really tired, frustrated and fed up like everyone. But will get there. Glad for your company. How is Pauline, anyone know? I had my Specialist visit yesterday with the lovely Mr Glenny and have to have a knee replacement soon. Darn. I really am falling to bits, lol. Had a great day though. How is everyone else?

October 3, 2008 at 4:40 am
(596) John says:

Hi All;
From what I understand Pauline has a form of vasculitis, which is like inflamation in the blood vessels that leads to damage to the same. This is possibly the reason why her kidneys were shutting down. If left untreated, it can be fatal! They did a biopsy on her yesterday and the results came back today. It’s a fairly rare malady. What causes it is not really known, but it’s tied in with immune system abnormality. She is currently on 2 “Almus” tablets a day at the moment for her thyroid. Will keep you posted..

October 3, 2008 at 4:36 pm
(597) Dawne says:

Hi John, There must be some relief for you all to finally have some answers now. It is interesting to hear it’s tied up with the immune system as that is what is affected in people with thyroid problems. So glad you managed to source some Almus pills. I was lucky to get them from the start and found they are very stable and worked from day one. Many others who have had them say the same. How I wish it was to be an alternative as well but impossible to source now. I’m very hesitant about having to change onto Goldshield next month. Best wishes to you all and hope it’s all good news from now on.

October 6, 2008 at 1:54 am
(598) jane H says:

Hi all,
Glad to hear of some results for Pauline. Yay. I spent 3 hours up in A&E yesterday. A lump appeared on my wrist and swelled to the size of a golfball. The pain was unbelievable. Ended up on Prednizone and Brufen. Feel better today, swelling gone down but still very stiff. Got a call from the doc, too. My bloods came back with a postive for Lupus. Good heavens, what next. I am seeing a Rheumatoid specialist in a week. Wonder what he will say. I seem to be collecting all these illnesses, one after the other.
How is everyone else?

October 6, 2008 at 6:48 am
(599) Jenny says:

Hi Jane,

If you haven’t heard of it try virgin coconut oil. It is marvellous for the thyroid gland and helps build up the immune system which is the reason for your Lupus. There is a lot of info on the Net, just google Coconut Oil Lupus. Here is one site to get you started:

http://www.coconutdiet.com/cfsfibro.htm

If you don’t like the taste of coconut you can get a deodorised one. Just make sure that it has been deodorised mechanically and with heat, not chemically. I have been taking coconut oil now for nearly two years and I reckon that it was due to the coconut oil that my symptoms from the levothyroxine were relatively mild compared to a lot of patients.

Coconut oil is antiviral, antibacterial, antifungal, analgesic and, as my GP has said “Practically a one-stop shop for good health”. I even cured a massive abscess after 1 week that an antibiotic wouldn’t look at!! The coconut contains Lauric Acid, which converts in our body to Monolaurin. It is Monolaurin which is in mothers milk and helps to provide baby with immunity. If you have a health food shop near you, see if they have got it or you may be lucky to find it in a supermarket. I was talking to a medical consultant at our local hospital last year who had spent 6 years working in Manilla about coconut oil and he said that “whether you use it externally, internally, or preferably both, you cannot do better for your health and the sooner the rest of the world wakes up to it the better off we will all be.” And he finished off by advising me that “as you are hypothyroid make sure your GP takes regular blood tests.” I have reduced my medication once since using it and I do not take the recommended amount. If you mention it to anyone you will get reminded that it is a saturated fat! Yes, it is, but it is what is called a Medium Chain Triglyceride saturated fat and as such does not contain cholesterol, so therefore cannot give you cholesterol. In fact it lowers cholesterol due to the fact that once it gets into the liver it knows what to do with it and instead of keeping it, it throws it out into your blood stream straight away as energy – and how!! Incidentally it works best if you also take pure cod liver oil.

October 7, 2008 at 12:54 am
(600) Jane H says:

Hi Jenny,
Thanks for that, i do use coconut oil all over on my dry skin, so will definitely try that. Off to the health shop tomorrow to see if they have some. Feeling not too bad, sleeping better, pain under control,and the swelling is down lots. Still so tired tho. But I do feel better. Been off Eltoxin 15 days now, doc said my thyroid was still stable, weird. How is everyone?

October 7, 2008 at 1:11 am
(601) Dawne says:

Hi Jane, Well I now have developed lumps on my hands ands wrists. 2months after going off pills. Did your swellings go down on there own? Will be trying the coconut oil as well. Sorry to hear about the Lupus. You must have a more concientios Doctor than me. Rang for prescription renewal this morning. Asked for Goldshield Levo and the nurse didn’t know what it was and asked how to spell Levo. And she used to be a lab technician. Makes one feel rather isolated when things start going wrong.

October 7, 2008 at 4:45 am
(602) Jenny says:

Hi Jane and Dawne,

Glad to see you are going to try the coconut oil. For weight loss and to build up the immune system 2 – 3 tablespoons per day is the recommendation, however if you find that it is too much to start with try 1 tspn at a time. That is what I had to do. When you first start consuming it you may well find that you feel quite warm, that is only your system getting used to the sudden energy release. It will settle down quite quickly. Here is a report on coconut oil from a professor of cardiology that you should find interesting to read.
http://www.biococo.com.my/articles/idea_fat_next_only_to_mother_milk_coconut_oil_dr_b_m_hegde.pdf

It is a PDF file and if you are unable to bring it up just google the words in the title. If by any chance you are in the Dunedin area there are two books in the library called Eat Fat, Lose Fat The Coconut Diet co-written by Dr Mary Enig, a Lipid Scientist from America and Sally Fallon. If you are not in this area try your local library they may well have it. It has lots of recipes and is well worth a read. Mary Enig spent two decades studying the full benefits of coconut oil. Just a warning though, if you mention it to the medical profession be ready for a lecture. My Dr was horrified when I told him what I was doing, however as you can see by my previous post he has now come around to it. If you want to discuss it with the medical profession take a copy of the article, that should start to convince them.

Good luck and if you have any queries I will be happy to help.

October 7, 2008 at 6:36 am
(603) Monique says:

Hi ya all, I am also from SA and had been diagnosed with an underactive thyroid in 2003 (after the birth of my daughter). Was put on Eltoxin and things started looking up. But the past year or so i have just had the worst (what i now know are side effects) experiences. A non existant sex drive. Excessive sweating, severe eratic behaviour where i was questioning my own mental state of well being. I was constantly crying or tired. It got to a point where i was ready to take my own life because it had all become too much to deal with. I was tagged with all sorts of medical names….Obsesive compulsive disorder, menopause (for goodness sakes, i’m 30…..okay okay…..33)to name but a few.
I went for a second opinion and was diagnosed with Graves disease…..taken off Eltroxine immediately and placed on diotroxin. Still in the phase were we do blood tests every month in order to establish the correct dosage taking into consideration my symptoms and test levels. But have to tell you that already i am feeling on top of the world. Almost back to my old self. Oh, how i missed her. I dont bite my nails (no more anxiety attacks) Cant remember when last a negative thought hi-jacked my mind. Have’nt had unexplained body aches since the change over of my meds.
What i wanted to say is that your body never lies…..this is what my ‘new’ doctor explained to me. The blood results could very well be within the normal range but no where near optimal for your specific needs.Trust you body and if your doc wont listen…..find a new one that will and who believes what you are telling him/her is true.

October 7, 2008 at 4:08 pm
(604) Janice says:

A friend rang me yesterday to say she had just caught a bit on the news about someone/group going to sue Pharmac. I have been unable to find out anything about it, has anyone else heard anything, and if it is class action can I please join in? I have been on synthyroid for just over three weeks and still not feeling much better. I had to pay $114 for 90×50 microgram tablets (1 month’s supply), this seems excessive compared with what others are paying, please advise.

October 7, 2008 at 5:38 pm
(605) Elizabeth says:

Hello everyone,

I’ve experienced many of the adverse reactions to the ‘new’ Levothyroxine over the last year and more, to the point of being certain I have polymayalgia (a recent protein sediment test is above normal) and concerned that I felt as though I was almost at hte M.E. stage (which I had for 6 years in the 1980′s). Recently, for three weeks, I took an emergency supply I had of the original thyroxine and felt amazingly well by the end of it. My doctor then prescribed Synthroid on a trial basis (which cost me $18.00 for 20 tablets). Within two days the old symptoms returned. After two days I refused to take any more. I am now on a very low dose of WTC – have just increased it to 32.5mgs daily – and am looking forward to feeling much better in a few weeks. My basal temperature is still low, and my temperature spikes during the day, confirming my suspicion that my adrenals are compromised. However, I DO NOT want to go on any synthetic form of Cortisol. The protocol sounds quite scary. Have any of you had medication for adrenal fatigue?

My very best wishes to you all for speedy help for what has turned out to be a nightmarish situation. It does teach us a lesson, though – to be self-sufficient as far as possible and not to give our power away to bureaucrats and ‘professionals’.

October 7, 2008 at 5:43 pm
(606) Elizabeth says:

Sorry – that should read ‘After FOUR days of taking Syntrhoid I refused to take any more.’ I did give it a little more chance!

October 7, 2008 at 5:58 pm
(607) Dawne says:

Hi Elizabeth, Synthroid has talc in the binding and other extras too as did the levo we have had to take over the last year. I have had the Allmus brand for 2 months as a bridging med and found it great as have many others. It has a lot less ingredients in the binding and it appears to be that which is affecting us all. Many have said they find they are better on Goldshield which is supposed to be being supplied as an alternative. Others are okay on the synthroid. I will have to go on Goldshield myself next month so have my fingers crossed it suits me. Have an address though in the UK that hopefully will supply privately if I have no luck with it. I wrote to the makers of Almus and they have no supplier here. Good luck and hope you are well soon.

October 7, 2008 at 6:12 pm
(608) Elizabeth says:

Thanks, Dawne. How did you get hold of the Allmus brand??? And, Jenny – how do you take coconut oil? I’ve know for some time that it was good to take, but not exactly why, so thanks for the information. But i find the taste too strong for cooking, and can’t bring myself to eat it neat. Is the deodorised product readily available, do you know?
About numbers affected – I spoke to about six people last week who had had adverse reactions but hadn’t yet been to their doctors. ANd my doctor said that he had had ‘a lot’ of patients with problems but that he hadn’t reported them yet as he had been overseas for two months. I think we’ve seen only the tip of the iceberg.

October 7, 2008 at 6:52 pm
(609) Dawne says:

Elizabeth. I actually had a prescription for Goldshield back in August but as there was none available some almus was brought into the country to fill the gap.

October 7, 2008 at 10:34 pm
(610) Jenny says:

Hi Elizabeth,

The deodorised coconut oil is readily available. I use the Kaiora brand. They have a website you could contact them and ask if they have any shops near you that sell it. For breakfast I have a bowl of rolled oats that have been soaked overnight and I stir a tablespoon of coconut oil in that. Unless I feel I am going down with a virus or bacterial illness I make that my daily dose to keep my immune system in good shape. Canned coconut cream and coconut milk are also available. However be wary on what the ingredients are in both of those. My local New World has the Exotic Food brand of coconut milk which contains just coconut milk and water and I use that when I want to. Look for any emulsifiers or preservatives of any kind that have been added and stay clear of them. With summer coming in you can make smoothies and add coconut oil to that. Also if you are boiling vegetables you can add coconut oil to the water as well and it seems to give a different texture to the vegetables. As to how and when you use it, you are only limited by your imagination. If you use Virgin Coconut Oil the taste of the coconut disappears due to the heat. If you feel you would be more comfortable with the deodorised go with that. If you have a Health 2000 shop near you inquire as to whether they stock Ceres Coconut Oil. They used to until the beginning of the year when the major suppliers ran out of stock. My local Health 2000 has not got it back, however you may be lucky to find it. There are recipes on the Net specifically for coconut oil. Here is a link to a few that should give you some ideas:

http://www.coconut-connections.com/recipes.htm

You will see that the last recipe is for potatoes roasted in coconut oil in the oven. You can fry them in shallow coconut oil in the frying pan and they are delicious. (Just remember to turn them regularly).

Incidentally like Dawne I am also on Almus and regret having to change. My daughter is on Goldshield and is really great, so hopefully that is a good sign that we won’t have any trouble with the change over.

You would also be best to start off with the 1 tspn at a time then gradually build up. Amazing as it seems coconut oil is a great 1st aid product for your medicine cabinet. Stops bleeding, (no need for any band-aids) heals wounds, heals and stops the pain in minor burns etc etc. Any further help and I will be pleased to assist.

October 8, 2008 at 1:55 am
(611) Caitlin says:

Recently found this site and answered some of my 9 yr old questions. Cant believe they are saying 800 odd with adverse affects. A pharmacist(unnamed as high up) advised me is 5%. That means 3500 not the 800 odd the media keeps reporting. Also I accidently found a site about synthroid and a medical paper quoting the fact that the American FDA is not checking synthroid bioequivalence – as I understood it that meant 50mcg of a generic brand being equal to a branded item and therefore you were open to being mismanaged medically becos of the extreme differences. The doctor writing the paper said the majority of docs prescribed it becos of the financial outcome(read his reward) and not becos they knew it was really reliable – funny to see the update about it today on Mary’s column. Perhaps everyone is waking up. Must admit was confused that some of you were just stopping the meds while I’ve been told will go into coma. Again (have Hashimotos)just read why. Feel like I’m finally being educated about how to keep myself well. Isnt that supposed to come from doctors. This blog and the pharmacists have taught me more since 6/10 than my doc in 9 yrs. Have just raced around ChCh and found Almus – UK brand, supposed to be better than Goldshield(that stopped all my probs) but also not and probly wont be funded. Will stop now – rather like a dam being released – sorry.

October 8, 2008 at 2:02 am
(612) Jane H says:

Hi Dawne,
My hands and wrists are good at the moment, but I feel it may be just the Prednizone and I-Profen. I take my last lot of Prednizone tomorrow, and will only have the I-Profen, so will see what happens after that, and if it comes back. Can’t wait to see the Specialist and will take more note of what he says than the doc who rang me, as he refuses to believe that the Levo has caused problems, very closed mind to the subject. I sure don’t want to be treated for things that might not be wrong with me,especially if it is just my body fighting itself because of a reaction to Levo. I am still hoping after a while all will settle down. So now it is wait and see, I guess.

October 8, 2008 at 5:31 am
(613) Elizabeth says:

Hi Jenny,

Thanks so much for all the information -really helpful. I cooked mushrooms tonight in coconut oil, but not deodorised. I’ll hunt that out. I have been using coconut oil on my face, hands, arms and legs so guess there’ll be some benefit from that. Smoothies, here I come – the milk and cream sound excellent. I’m a label reader and refuse to buy anything with additives of any kind – and hope that the store camera is on me as I put the item back with a frown on my face. I’ve been using rice milk but that is not available at present. Good to have an alternative.

It’s wonderful to have found you all – such a relief to have people to chat with and share ideas.

Has anyone had cortisol treatment for adrenal fatigue? I’m sure I have that problem but the protocol for taking the medication sounds very scary and I’m not prepared to get into that scenario. It appears from reading that herbal supplements aren’t the anwer. Does anyone have any alternative suggestions? I’ve had quite bad swelling of the lower leg and ankles during the day and am hoping that this will no longer be a problem once I am on my optimum level of WTC.

An offering: something that I’ve discovered recently is a deodorant alternative after becoming hyper-sensitive to the crystal deodorant I’d been using for many years. Baking soda burnt my skin and I was becoming quite desperate. I now use organic cider vinegar (Mrs Braggs is great) and have total protection for a day at least, usually 24 hours. The vinegar smell lasts only a few moments and there is no sting to the skin whatsoever.

October 8, 2008 at 11:30 am
(614) John says:

Hi All;
Quickly reading between all the lines above, makes me feel a lot of the stuff you guys are talking about I am hearing from Pauline and her doctors in the hospital. From going to a very active person this time a year ago to now having Microscopic Polyangiitis which is a form of Vasculitis is a bit hard to understand until the likes of medications and or antobiotics gets mentioned as possible causes of the malady. The outlook is not that flash either. With the possibility of 6 months on steroids and then on to something that is stuff that can cause cancer!! All this is linked in someway to Pauline’s thyroid problems.
Keep up the good work as I really want to find out who is/was responsible for this! There has to be some sort of accountability for what has happened. It can no longer be just brushed aside. Pauline is seriously ill in hospital and in my heart of hearts I am very sure it all started with eltroxin / levothyroxine call it what you will!

October 8, 2008 at 4:10 pm
(615) Jenny says:

Hi Elizabeth

Deodorant – Again use coconut oil. You can use either the VCO or deodorised. Whichever, just rub it well in and you have no oil stain on your clothes. For me it lasts 24 hrs. However we are all different you just have to try it to see. You can also add a little bit of lavender oil if you wish to have a perfume with it. I do not, I find that it is great on its own. The VCO does not leave any coconut odor either. Incidentally, if you want to use it for massaging into any aches or pains put some in a spare jar and put the jar into hot water to completely melt it. I find that it works best that way. I have osteoarthritis in my hands and I have full mobility and no pain. Regular applications during the day to start with then depending on the severity cut it back to around 2 – 3 times a day. During the heat of summer you won’t have melt the oil as it will do so on its own. You don’t need to keep it in fridge either. You can melt it and then let it harden as many times as you like. Coconut oil is very stable

Cheers
Jenny

October 8, 2008 at 6:46 pm
(616) Elizabeth says:

Thanks again, Jenny. You’ve been very helpful. My cat started to lick my coconut oiled hands this morning with great fervour. So i gave him a little of his own to eat – within a few minutes he had stopped sleeping on my bed as he usually does these days and was outside. So my two aimals are also going to have a daily dose of coconut oil!

October 8, 2008 at 8:06 pm
(617) jilly says:

I am just on my way out, so will be brief..

CARM now have over 1200 reports of adverse reactions, with more to come – please make sure you send them a report of what you are going through.

http://carm.otago.ac.nz/CARM.asp

Yes, a group of us are looking at class action. So, if you want to join us, please have a look on trademe messageboard – under general, thyroid.

Jane, if you are still on Eltroxin, I would recommend you print off information and take it to your doctor – have a look at the questions asked in Parliament, also, ask your Dr why Pharmac are bringing out an alternative is the symptoms are not caused by Eltroxin. If he continues to refuse, then find another Doctor that is up with the play.

John, it makes me want to cry to hear about Pauline, I totally agree – this should not have happened and some one is accountable. Please contact us thru trademe, see if we can help in any way.

October 9, 2008 at 3:10 am
(618) Jenny says:

Haha. Yes, my mother’s cat has also taken a liking to it. She uses it on a badly affected osteoarthritis knee and every night around the same time he sits and watches her, waiting for the tell-tale sign that she is going to start using the coconut oil. He loves it. A friend of mine is a vet and she said that it will not hurt them at all. In all probability will do them a lot of good!!

October 9, 2008 at 4:11 am
(619) Jane H says:

Hi Jilly,
Am off the horrid stuff, have been for around 17 days now and beginning to feel human, to a point. I feel a bit more perky today and thankfully, have found another doctor who will at least listen. Waiting now to see the specialist next tuesday.

John,
Am sad to hear about Pauline, I am thinking of you both and hope soon to hear some good news.

Hope something can be done about this stuff. I popped a tablet in some water tonight after reading about it in the Trademe message board and mine didn’t even last 20 seconds before it fizzed and melted. Our poor bodies. I missed the news thing last night on Prime. Heard a bit of it off the net tonight and it sounded to me like Pharmac are passing the buck. Anyone have news about that?

October 9, 2008 at 4:50 pm
(620) Elizabeth says:

Hi Jenny,

Started with a teaspoon of coconut oil yesterday in a delicious smoothy. Added an organic egg this morning. Did you have any changes to your bowels when you started??

I’m now on 32.5mgs of WTC daily and can’t wait to get up to the equivalent of my former level of thyroxine (100 mcg daily) as my energy level is still low. I have Hashimoto’s and am praying that this is going to be the anwer. I hate drugs and chemicals of any kind and avoid them at all costs.

A big thank you to all who are working so hard to get help from Pharmac – am I right in thinking that Medsafe are the real culprits seeing that they are the ones to approve drugs in the first place?

October 9, 2008 at 5:21 pm
(621) Janice says:

Hi Jilly
Thank you for the information about the class action. I am not a familar user of Trademe and I have been through about 12 pages on the ‘General’ message board looking for “Thyroid” but have given up. Can you post the URL?
Janice

October 9, 2008 at 5:36 pm
(622) Jenny says:

Hi Elizabeth,

Sorry I forgot to warn you about that. Yes changes to bowel habit does occur but should quickly settle down. You [may] also feel as though you have a tummy bug, that is only your immune system ridding itself of any impurities that it may find, and once again, will settle down.

Jilly, I have been following the Trade Me posts since not long after it started. I haven’t joined in as I feel there are enough of you already and you very quickly build up the number of posts.

What’s the story with the Class Action? Having received an email from Clare Bleakley which was also sent to Pat I find that I am now on her list. Is there a way we can join you without jamming the Trade Me thyroid forum please?

October 9, 2008 at 9:39 pm
(623) jilly says:

The url for trademe is http://www.trademe.co.nz/Community/MessageBoard/Messages.aspx?id=30316373&topic=5&L=1&C=1 but it sometimes changes, as when our thread gets over 3000 postings we get removed and have to start a new one.

If you are on Pat’s email list then you will get up to date news, however we also have a site for the New Zealand Thyroid Association, which has great web links, especially this site owned by Mary Shomon, she has amazing information here, if you search.

Our webiste is http://keenkiwi.orconhosting.net.nz/index.html

October 9, 2008 at 10:45 pm
(624) Maree says:

Hi just started reading re thyroid probs. Hve been having trouble since June. Sent to rhumertologist who says I have polymyalgia rhumeratica and to take steroids. Have very bad pain in knees, shoulders and top of legs. Exhausted, grumpy etc etc. Im not taking levo anymore taking synthroid for 8 days now no diff yet, but am hoping. Vit D level down also. Has anyone else go elevated c-reactive protein normal 5 mine 24. Feel like im banging head against brick wall as no one thinks its these pills!!!!

October 9, 2008 at 11:16 pm
(625) Caitlin says:

I would like to fill in form for CARM but got lost. I went to Reporting but there are about 4 forms. Can anyone help please. Hope you all know how wonderful it is to find all this info and help. Thought I was just a whinger.

October 10, 2008 at 1:11 am
(626) Dawne says:

Hi John, We were over in Palmy today and happened to drive past the hospital and I sent a silent wish to Pauline that she would recover very soon. Then I thought how strange that a diverse group of strangers from one end of the country to the other have come together to such a degree that when someone we may pass in the street and never know could be so much in our thoughts. Names become familiar from personal stories so like our own. We seem to have to keep fighting but really it is quite remarkable what has been achieved in such a short number of months only because of the pressure of the group. We can only hope that some of the hospitals and medical people will finally realize they have a role to play in this too and start to question what is really happening. From the research that so many of us are doing it is becoming obvious that a combination of things has caused this disaster so why can’t the front line medics start asking some questions too.
It has been proved the pills dissolve in fluids.In seconds. All except what we presume is the Colliodal silicone binding that is there to “Act as a shield to protect the levo so it has time to enter the system” This hasn’t worked and is probably the reason our throats were so rough and hoarse. Also I have found on the net that it can cause calcification and crystalization in the body. Talc can also cause damage to the kidneys and other organs. I wonder why some medical people don’t do a few hours research and find what we have found ourselves.
Please give my very best wishes to Pauline and regards to you both.

October 10, 2008 at 4:08 am
(627) Pauline says:

Hi All..

I am actually out of hospital, got out today after having chemo’ for MPA [Microscopic Polyangiitis] that is associated with an antibody called ANCA. I am apparently very rare – one in a million, which I am not all that chuffed about!! I am still convinced that it was the thyroid medication that started all this, indeed looking back up at the recent threads makes me more convinced than ever, it was. I have 6 months of treatment of pretty horrible drugs. Very interesting about the kidneys and the talc. I wonder if there’s anyone else has had the same probs!! As I had dehydrated so much I ended up with about 14 litres of fluid shoved into me. Of course with my kidneys deciding to pack a sad I put on a lot of weight as I wasn’t getting rid of the fluid. It felt like I had a boot full of water!! That side appears to be coming right. I’ve got rid of the boot full of water and I’ve lost a lot of the liquid through normal means. I still have to drink like a fish however to keep up the momentum of flushing my kidneys out as the drugs I am taking has to be flushed through the system. I am also on anti sick pills as well, to combat the other stuff I am taking.. Just in passing it also affected my lungs as well.
Will keep you posted..

October 10, 2008 at 10:43 am
(628) jilly says:

So nice to hear from you Pauline. I am horrified at what you have gone through and , hope you recover quickly.

I posted a message earlier today with the URLs for trademe and the NZ thryroid association, however it seems it was blocked, as it is still not showing. So, sorry but you will need to locate them thru the usual searches.

October 10, 2008 at 10:29 pm
(629) Caitlin says:

Without having met Pauline I’m really relieved to read her on the site again. I’ve just spent a few hours reading from #1 and copying and pasting all the most important bits to a file on my computer.(Cos of the TradeMe site where they wipe the blog every now and then). Have only got up to 227 but dont want to risk losing any of the info. Now I’ve got emails, URLs and books plus heaps more. Also like to say I appreciate Jilly’s sharing and helpful advice. Noticed thru rereading today that the cost seems to vary a lot. I pay $1 for a 50mcg tablet-3per day so $90mth. I’ve used 3 different chemists so far. This is for both Goldshield and Almus. Is this something we have to bargain over with ea indvidual chemist? Does anyone know?

October 11, 2008 at 9:29 pm
(630) jilly says:

Thankyou Caitlin, that was nice of you to say :-)

To find the site where you can access information about what the group is doing, join the association if you want, ask questions and keep in contact with others, find other relevant sites, etc google “new Zealand Thyroid association” it will give you the link – the url starts with the word keenkiwi.

October 12, 2008 at 4:19 am
(631) Caitlin says:

Tx Jilly- off to check it out. Tho have been checking dates and a little suspicious over dates we have been given. Had my gallbladder out Jan2007 and BEFORE that had conversation with chemist and doctor over ELT on bottle as it only ever had THYROXINE before that.Quite a few of the symptoms I have definitely had longer. Red face, ISB, aching,bad sleep, memory loss, dry skin plus warty areas. Been burning things off and cutting things out for about 5 years now. ????

October 12, 2008 at 6:12 pm
(632) jilly says:

That’s interesting, Caitlin. One of the ladies that is posting on Trademe has the same suspicions. She found some old formulation and went back on those, and found she had side effects – whether her theory is correct, or whether her system can no longer take any GSK formula, who knows. She is getting her old pills tested to see what exactly is in them. Time will tell, huh?

October 12, 2008 at 7:57 pm
(633) Dawne says:

Hi Caitlin, You have got me thinking now about the earlier Eltroxin pills. I have been on them, the yellow 100mcg ones, for 13 years before going on the new formula ones last October. I have no thyroid at all. I wonder if maybe I was slower than others picking up on some of the side effects this year because for a year or so before then, can’t remember just how long, I had been having the same as you and also felt generally unwell. Esapecially during last year. During that time getting started in the mornings was something I dreaded as I was so stiff and unable to think until the pill kicked in. In May last year I went down very suddenly with IBS just as I started a new lot of pills.I had months of dysentry and lost so much weight and had trouble finding anything I could eat and keep there. This continued until I began the new formula in October which as we know had the opposite effect. Also in the year or so leading up to the change I developed Roscea of the face and allergies to almost any cosmetic. I developed the lumps and dryness and discolouration as well. Up until then I had managed okay on the old yellow eltroxin. I actually asked the Doctor if maybe the strength could vary from one lot to another. It is only since changing to the new alternative that I have found I have lost the stiffness in the mornings, Rosea and the IBS is practically non existant. Makes you wonder doesn’t it.

October 13, 2008 at 7:13 am
(634) Caitlin says:

Well call me paranoid but NZ is just the right size to run trials in. Its been done before but not the meds area as far as I know. Eftpos was first trialled here I think.And they said re the ELT there was no prob in other countries but this blog proves otherwise. I think Im lucky – becos I had to wait just over 2 yrs for my gallbladder op I had to eat really healthy. The result is that altho I can say I have most of the symptoms only the headaches and boneaches now take me down. The ISB and lactose intolerance kicked in within 2months of the op. So thats Mar-May 2007. Also had to get a blood thing cut out of my forehead this year -tangled blood vessel protruding thru – r these part of it? Got the lovely ruddy forehead cheeks chin. Got a rather large nose so prety glad havent got it there yet Whew.They say the Irish are prone to the rosecea and that’s me.Lovely scaley white dry skin. Keen to check out the Virgin Coconut Oil. Going to health shop on Thursday.The things we blame on age when it aint necesarily so. Betta get to bed or I wont cope tomoro. Love to all. Keep your chins up as answer cant be too far away now.

October 13, 2008 at 10:08 pm
(635) jilly says:

Hmmmm, Dawne, now you got me thinking.. I developed Rosacea on my face about 6 months before I started the new formulation. The Dr said causes were unknown, but thought to be stress related. Gave me anti-biotics which didn’t do much.

Strangely, since I have been on WTE it has almost cleared up on it’s own…. hmm ponders the implications..

October 14, 2008 at 4:19 pm
(636) Janice says:

Catlin, New Zealand is being used for drug trials all the time. I used to be on a hospital ethics committee and most of the trail protocols were funded by drug companies. Most New Zealand medical school research departments are dependant on drug company money for there research. New Zealand is seen as an ideal place for trials as we have an organised, subsidised, national health system, a small, compliant, willing and educated population, and they couldn’t be sued becasue ACC would pick up any problems! I guess we are the trial subjects. There have been several trials (generally not funded by drug companies)to establish the negative effects of thyroxine on bone density. I wasn’t told about this 25 years ago when I was put on thyroxine and now my bone density is very poor despite a good diet.

October 14, 2008 at 8:15 pm
(637) jilly says:

Janice – that is shocking ! Are you saying that people were used as guinea pigs without their knowledge ????

October 15, 2008 at 7:23 am
(638) Caitlin says:

Surely the people taking part would have to give their consent tho. It smacks of Govt participation otherwise. My head is spinning. So much to hide.

October 15, 2008 at 4:14 pm
(639) Janice says:

Yes, the people taking part in trials have to give consent and that isa big part of the ethics commitee work to make sure that the informed consent covered what was requried, but quite often I thought these were a bit spare. I don’t think we are part of a foraml trial, I think we are victims of the “she’ll be right” school. Eltroxin was tested and passed as fit by MedSafe, but like Fonterra they didn’t think to test for what might be in the pills only what might not. I would say the fillers arrive at the factory in 25kg bags and are just tipped into a hopper, with perhaps some tests, or else just a declaration from the supplier about the purity of the product supplied.

October 15, 2008 at 8:00 pm
(640) jilly says:

Yes, Janice, according to an answer given by the Minister of Health to a parliamentary question, the pills were tested – over 48 hours on 36 people, of which 25% had adverse reactions…. yet they still gave it to us. Makes you wonder about their sanity, huh ?

October 16, 2008 at 6:32 pm
(641) Valron says:

Hi Everyone,Have just got back to this site and have caught up a bit.Jilly I never heard of the meeting in Christchurch and am disappointed.I will be very interested in any future ones.I am on the ThyroidNewzealand site and also Pat jones.Can you add me to your list?thanks-Val

October 17, 2008 at 4:20 am
(642) Caitlin says:

How can they say it was ‘tested’ over 48 hours. Most of us know that at the beginning we were ok but longer term – maybe 6 mths -we are developing more and more effects each day while the original side affects get nastier. What kind of scientific standard is that? Surely their heads should roll for that idiocy.

October 17, 2008 at 2:16 pm
(643) jilly says:

Valron – glad we have caught up via email, it will be great to meet you.

Caitlin – yes, we were shocked to – but that info came as the answer to Parliamentary question. Shame that parliament closed before we could really grill them.

October 17, 2008 at 3:19 pm
(644) Angela says:

what i cant understand is they say the tablets are tested on healthy people, how can they have the same adverse reactions as people with no thyroid or one not working, if you give thyroxin to a normal thyroid wouldnt that make you more hyper, then only two days of it, it would be out of your system, whereas those that need it have to keep taking it for a lifetime.

October 17, 2008 at 3:35 pm
(645) Angela says:

..and in saying that, if 25% of those healthy people got sick, what does that tell you about the tablets?

October 17, 2008 at 4:16 pm
(646) John says:

HI Guys;

Not that long ago we watched a programme on CI (Sky) about how a lot of people in a small town in the States got mysteriously crook. It was subsequently found out to be the meat in a burger. When it was sourced back to the origin it was found that the meat being processed at a meat works contained the thyroid of the cows. One does wonder what would have happened to those people in the town who had an under active thyroid (or no thyroid at all), would they have got instanteously better. Bit like you guys on WTE.
Pauline’s slowly recovering, but considering she’s been ill now for about a year it’s gonna take a while before she’s back to (comparative) normal. She’s still got 5 months of cemo to look forward to and all the possible side effects of that. I think it’s like taking 5 paces forward and 4 back.
Keep up the good work….

October 17, 2008 at 4:25 pm
(647) John says:

Caitlin (634)and Angela (636)

Good points.
If the trials were carried out on healthy people, it’s gonna make them crook anyway. The tests must have been carried out on people who were crook surely!?? Also as you said Caitlin it would take a while to figure out that the tablets were making you sick – well more than 48 hours. It must have been at least a month before Pauline figured the Eltroxin was making things worse – not better.

October 17, 2008 at 5:18 pm
(648) Dawne says:

There is no way a couple of days testing will give a true result. I have always been told by the Doctor that it takes up to a month for a change in strength of meds to have it’s full effect. That is the reason we have to wait that long at least before being retested on changing the brands as well as after readjustments. I have never been totally sure if it works quite the same though with no thyroid at all as with those with a thyroid. Would be a waste of time asking him me thinks but I do notice a difference in how I feel within an hour of taking it. He was determined a couple of years back I was getting too much and had to try only 50mcg twice a week instead of 100mcg daily. Only tried it for one day and never again. By afternoon I could hardly speak, Think or control my hands on the keyboard. Not unlike being on the GSK Levo! Also wonder if the binding in GSK over the counter pain killers have the same in. Had neck pain a couple of days ago from near accident in the car and finally gave up and took one and that set me back a couple of days. Made me wonder.

October 18, 2008 at 9:41 pm
(649) Angela says:

Jane how are you doing?
John say hello to Pauline, and hope she makes a speedy recovery. It must get better after what shes been through. My mum pretty much lost a year out of her life, October to October!!!

October 20, 2008 at 6:34 am
(650) stella says:

Have decided to take over management of my Hasi’s myself. Have been on alternative Synthroid for the last month and around 75% of my adverse symptoms relieved with that change in medication.
Today I requested full bloods and asked for a copy of the lab report to be sent to me (no problem said the doctor) I also asked that the “test range” used by the lab be given to me ( no problem said the doctor it will be on the lab result that you get sent to you.
About this time I started thinking “this boy is really accommodationg and up with the play” “what a nice surprise”. BUT NO! In the next breath the Dr. said to me ” There is no reason that the Levothyroxine should cause any problem to anyone – we have had it tested not once but twice and there is absolutely nothing wrong with it and there is nothing in it that could cause any problem”
I asked the Dr. ” So how do you explain the hundreds of people that have reported adverse reactions to Levothyroxine? He said it was a mystery and he did not know.
I staggered out of there thinking heaven help us.

October 20, 2008 at 8:21 am
(651) jilly says:

Sigh, Stella, that attitude continues to amaze me. If there was nothing wrong – as you say – why are so many suffering, and why has Pharmac agreed to fund Goldshield ? Why can;t Dr’s see that one pill does not suit all – just like contraceptives and antidepressants – there are many those to find one that suits, Why do they think thyroid pills are any different ?

October 20, 2008 at 2:56 pm
(652) stella says:

Jilly
Amazing isn’t it. By the way I forgot to mention he also asked me if I wanted some Amitryptiline? God give me strenght I was NOT there to see him because I was feeling depressed!
My cousin in Auckland has a strange story – she went to her GP because she decided that she had to come off the Eltroxin. Her GP agreed and weaned her off over a month telling her that after getting off it and staying off it for a month he would re-test her bloods and decide what was best for her.
Get this !! Having been off the meds for three weeks, feeling not too good, and given that she was going overseas she contacted her Dr to see what she could do HE TOLD HER SHE COULD TAKE SOME OF HER ELTROXIN if she needed to. She rang me in SHOCK / HORROR that he would say that.
They do not appear to have gotten the message at all.

October 20, 2008 at 10:01 pm
(653) John says:

Hi Jilly;

I’d say your cousin’s doctor is an alien from Alpha Centauri. He obviously doesn’t listen to or watch the news, so he must be from another planet!!! Either that he’s on some sort of brain numbing drug!!#$%^^&*^(%^&&(*

This sort of thing really annoys me. Here are we right in the middles of a major thyroid thingie and the very people who should be taking notice of what’s happening ain’t doing squat!!

If I am a mechanic I read up on the latest things happening in cars or whatever. If there’s a better way of servicing a vehicle I’ll show it to the boss and if he’s got any nounce he’ll read it and adopt it. For some reason doctors ain’t like that. They seem to live in a tiny world of their own!!

October 20, 2008 at 11:58 pm
(654) gail says:

I have been taking thyroxine for 42 years. I have primary mixodema. One lass was wondering if thyroxine replacement caused osteoporosis. So far so good. I’m 51 years old with bones like a dinosaur!! I have always been a bit prone to joint troubles but I began getting big problems with swollen and very painful joints, especially knees, shoulders, feet and hands late last year. Sometimes my hands felt as though scalding hot water was being poured over them, especially at night. By Januaury I was living in Oz and for the first time was not taking thyroxine from my NZ doctor but aussie Eltroxin. I was initially diagnosed as having menopausal arthritis (polyarthralgia) and given Brufen an anti inflamatory. I got up to 1600mg a day just to keep mobile (I am a high school teacher) when a nz friend who has hashimotos thyroiditis told me about the problems she was having. They matched mine perfectly. Fortuately we both have the same excellent kiwi doctor. She is taking whole thyroid and already much improved. I started goldshield on Wednesday and stopped the brufen on the same day. My joints are still very sore but not as bad as they were. My doctor is getting weekly emails from me regarding what will hopefully be my progress back to normal. After reading these comments I really appreciate how lucky I am to have a doctor who recognised the side effects and speedily prescribed the alternatives. Thanks guys for all the valuable information. I’ve been on the net all day.

October 21, 2008 at 3:35 am
(655) bronny says:

i have given up on all synthetic thyroid medications and have changed to “whole thyroid” which is a natural one used many years ago. my ongoing problems from levothyroxine have been delibitating for four years.

October 22, 2008 at 6:52 am
(656) Caitlin says:

Do we have a problem? Was looking at Pharmac site: media release 16/10 re money (what else) and see this little gem ..”Pharmac’s decision to raise subsidies on two medicines – ……..and thyroxine (Eltroxin) supplied by GSK meant an extra $5 million was spent on these medicines and so wasn’t available for new investments. Both drugs are used by tens of thousands of New Zealanders.” So now we are the bad guys for wasting their money. And what do they mean an extra $5 mill on thyroxine. Surely they didnt just dive in and order more. Anyone know anything about this?

October 23, 2008 at 11:11 pm
(657) Janice says:

Hi Caitlin
No we don’t have a problem (I hope). The Pharmac media release of 16/10 refers to the fact that GSK put the price of Eltroxin up in the 2008 financial year, which cost Pharmac part of the extra $5M they had to spend on two drugs, but they don’t say how much each individual drug went up, nor do they say when in the year the cost increase came in. It is disgusting that GSK stopped supplying the old Thyroxine as they had a dearer one they could supply, or am I just being cynical! Were they charging for the cost of their research into the potential problems they thought the change of formula might cause? There is a new release on the Pharmac site (23/10/08) saying that Goldshield will be available and subsided on 1/11/08, but they are still waiting for an approach to subsidise the supply of Synthroid.
Gail, glad your bones are still good after 42 years on Thryoxin, if you Google bone density+thyroxin (I understand URLs don’t work on this site) you will find lots of contradicting research regarding this problem. It appears the jury could still be out, unless you are like me and your bone density is bad, but then for the last 25+ years everything medical that has happened to me I have tended to blame it on my inactive thyroid. I guess if I had got pregnant since I was diagnosed I would have blamed that on the poor old thyroid as well.

October 25, 2008 at 7:43 pm
(658) Christel says:

Hello
My Rottweiler dog has been diagnosed with hypothyroditis and is on Eltroxin 100 since about 2 weeks. He smelled really bad from his skin before he has been give the medication and the vet said that it is one symptome of the illness. Now since about a week he exhales such an offensive odour that I can’t keep him in the house. I would like to know if anybody else had experience like that with their pet.

October 31, 2008 at 5:58 pm
(659) Angela says:

Goldshield is subsidised from today in NZ!!!! Great news for all those that can take goldshield. NOW we need to lobby for another alternative for those of you that cant and to have the eltoxin recalled.

October 31, 2008 at 6:38 pm
(660) Dawne says:

Well the 1st day of alternatives at last and coincidently my first day on Goldshield after 3 really great months on Almus. Am so hoping they work as well but think they may be a bit stronger as feeling a bit sweaty in hands and feet and a trifle shaky today. Hopefully this will settle as the last thing I would need is to be upsetting the ballance now as just started putting on weight at last. Am hopeful things will settle.

October 31, 2008 at 8:36 pm
(661) Angela says:

Dawn
my mothers weight is improving too, since stabilising on the goldshield. shes been on it 4 months now. i on the other hand am hoping to lose rather a lot!!!! All the best for the change. No change is good though and it may take a while to settle, especially when you have had 3 (and some have had 4 changes due to all this mess.)

November 1, 2008 at 10:18 pm
(662) Caitlin says:

Cant believe this. Was on Eltroxin then a month of Goldshield then Almus for last 3 weeks. Felt incredibly good on the Almus but as of last Thur got really bad migraine (might be coincidence) followed by three days of pain internal between my left ribs and hip – inflammation and sort of throbbing and it wont let me sleep or lie down or lean against anything. Is this what some of you have already had. Worried its kidneys. Any ideas please. Havent had any bloods done since switch to Goldshield so will need to see doc as well but its great to go armed these days.

November 2, 2008 at 1:27 am
(663) Dawne says:

Hi Caitlin, I wish I could help you. Haven’t had exactly that problem but was on almus for 3 months and felt just wonderful. Been on Goldshield a couple of days and feel really terrible. I know others have said that changing brands can cause problems for a while but I should get it looked into if trouble persists. Perhaps others can help as have read where stories similar to yours. Good luck. How did you feel on the Goldshield?

November 2, 2008 at 3:11 am
(664) Caitlin says:

I took the Goldshield for 34 days (150mcg daily). Initially felt great but about end of week 2 got the headaches back and the down feeling. Hoped, and still do, that it was the eltoxin(prefer that spelling-says it all) still leaving my system. Only have enuf Almus to 13th Nov then will be back on Goldshield. Have had the swollen back before and asked the doc but she said my adrenals were fine. Been passing water every 30mins and I’m certainly not drinking THAT much. Talked to my daughter who ran me thru a few questions and dont think its an infection. Watching my salt and fluid intake. Just been reading above blogs and found calcium tablets plus womens multi with vit C and selenium in my cupboard and will take these daily to see if they balance me a bit. Am definitely not aching all over and doing the ‘alligator death roll’ anymore. Recognised that description the minute I read it. First time in 37 years of marriage I won the bed clothes! Just that my back hurts to lean against and my job involves sitting at a desk for 8 hours on the phone. Dont want to take pain killers as could add to problem in the long run. Swallowed so many of them already becos of the headaches. I am feeling sorry for myself and cant take anymore time off.

November 3, 2008 at 1:48 am
(665) Pauline says:

Hi Guys..

Caitlin, I am kind of speaking from experience here. I had kidney failure and a blood test will check that out for you to see your creatine levels are high or not. There is something in a blog somewhere that does say that if you have kidney probs levothyroxine ain’t the best medicine to be taking. I do know that my creatine levels went up when the hospital up’d the levo’ to 2 pills a day. Coincidence or not !! My thyroid levels are pretty well normal now. I am on Goldshield as we speak, 100mg a day. I am still waiting to find out what my current creatine level is as I’ve had blood taken out almost weekly!! (I have another this Friday before I go for the next cemo).. It’s just I feel so tired (totally knackered to be precise). Other than that I’m probably getting slightly better.

Crystel, sorry to here about the dog, I guess Dr Jessamine would say it’s all in the mind!! I guess the best thing to do is to try Goldshield and see what happens. Good luck on that!

November 4, 2008 at 1:47 am
(666) Caitlin says:

Tks Pauline, glad to hear you consider you are improving rather than doc’s saying it when you’re not! Pity you are so tired. But then you’ve really been thru the mill. Your poor body. I checked out your posts when this happened and it sent me looking for kidney connections. Can cause some pretty rare things but nothing I cld matchup with without dying!! so behaved myself and went to doc Monday. She was wonderful, asked me how I was feeling and thanked me for the info and actually said she couldnt believe the adverse affects that I had that had now disappeared (in all my hyper chondriac notes from prev doc). Anyway its not my bones or muscles or an infection and my bloods are normal. Between 6.30am Mon and seeing doc 9am (after hot shower) my back went numb. Still is. Full handspan between my left ribs and hip and spine to side. Weird. Allowed panadol as definitely not liver and it stopped pain. She touched me with cold hands and I shot up. Could feel cold but not actually feel. So no answer yet. My mind went its normal blank(still got it-might be age-58) so forgot to ask if she was testing creatine and also forgot to ask about ACC forms. Ah well – think now Im going to come off Almus and go onto Goldshield and see if I can stabilise. If it not then I will have another option left and my doc said she was quite prepared to also put me on WTE. Have this week added selenium VitC and calcium in to see if it helps with the synthetic. At moment still on 150mcg. So am feeling up but confused! Love to all.

November 4, 2008 at 6:18 am
(667) Angela says:

Waikato Hospital
I am interested in how many people have been through Waikato hospital or used health services relating to Eltroxin over the last year?

November 5, 2008 at 9:29 pm
(668) Dawne says:

Well, along with all the others, after months of the writing letters and fighting for the right to an alternative med for us all it turned into a strange coincidence for me. I finished the last of my Almus last Friday. Started the Goldshield on the 1st, our celebration day, by Monday was very unwell and in the wee small hours of Tuesday morning I thought it was going to be my last night ever. The headache, shakes, chest pains and the sense of the body racing along with palpatations were the worst I’d experienced since an antibiotic reaction a few years ago. On Tuesday I rang our Chemist, who has been there for me the whole way these last 3 months, he suggested I stop taking them on account of my allergic reactions to most meds, paved the way with the Doctor who isn’t clued into all this at all and arranged some more meds for me. He also told me he is researching into it all as well as he has other customers in the same boat as me. The whole medical world seems upside down when you turn to your pharmacist for help instead of your doctor. Choice would be a good thing as far as Doctors go. When I rang to arrange for the new prescription the nurse ( who is also the doctors
wife) decide to give me a lecture on how they have a busy practice to run and can’t be writing out prescriptions on call even after the chemist ringing first. I have to say though by the time she rang to say it was ready she had changed her tune. Will never know why.

November 6, 2008 at 1:07 am
(669) Angela says:

Dawne
seems a lot of people are getting sick on the ‘new’ goldshield, they are not the same packaging as the ones i have been taking. What is going on? some people have been given them in bottles and these are NOT goldshield.

November 6, 2008 at 2:17 am
(670) Dawne says:

Angela
The problem is mine was the original Goldshield. The chemist got in in advance for me. I think it probably would have been better if I had gone on it straight after I went off the levo. In the meantime I will just have to pay to feel good. To tell the truth like all of us I would also like a chance to feel human again without worrying where the meds are coming from and fighting raging thyroid hormones. Maybe next year when I have some more weight on I will try again. Time out I think.

November 6, 2008 at 3:15 am
(671) Angela says:

Hi Dawne
all the more reason to fight for another alternative and to get the eltoxin removed. Alan said we should not have to change medication especially when you are allergic to one, I wonder if you can get a special exemption to take the almus. They have to do something!!!!!

November 6, 2008 at 3:29 am
(672) Pauline says:

How strange.. While I was in Hospital I was on Almus. I ran out of it not that long ago and went onto Synthroid. Oddly enough my Creatine levels were dropping, now I see from my last two blood tests (I have them weekly) they have shot back up again. It also seemed to coincide with the change over from Almus to Synthroid… Either that or the Chemo I have been on was getting at my kidneys.. John just picked up some of the new “Goldshield” from the chemists today and ..funy ole thing… they are not in the same packaging as the old stuff.. We have it in a blue and white packet as opposed to a creamy colour packet with Goldshield written on it. Looking at the blurb however, that comes with both boxes they look pretty well identical.. down to even the address in UK except for Goldshield read Forley Generics.. The tablet appears to be exactly the same with the same ingredients. Both tablets appear to be the same colour and size, both tablets appear to be scored. Having said all this it is a bit of a worry. Just wonder if anyone else is having probs..??

November 6, 2008 at 5:14 pm
(673) Janice says:

Oh dear. I was just going to go onto Goldshield and was looking forward to not having to pay the $114 for Synthyroid this month. Now after reading the last few posts I just don’t know if I want to risk it as I seem to be getting on not too bad on the Synthyroid. My hairdresser commented yesterday that my hair has got thicker, which I took to be a good sign after watching it come out on my brush everyday I was on levo.

November 6, 2008 at 5:41 pm
(674) Dawne says:

Janice. A lot of people are doing really well on Goldshield. My problem is I have lost a lot of weight on the GSK levo and was just starting to put it on. I wonder if people who aren’t underweight like I am have less trouble with the stronger change over. I had to stay on it for a couple of days waiting for the replacement to arrive and found that if I took it close to breakfast instead of waiting the half hour suggested I seemed to be a little better those days. Weight is supposed to be taken into account when prescribing thyroxine. Good luck in what you choose. Hope the changeover goes great for you.

November 6, 2008 at 6:22 pm
(675) stella says:

Hi everyone I thought I weould share with you what I have done and where my health is at at the present time.
Since getting my FreeT3 / FreeT4/ and TSH results sent to me direct from the lab I have been back to my Doctor armed with information from Pharmaceutical Compounding Dr Sahar tohether with documentation taken from Mary Shomom’s site. For the first time I had a really meaningful discussion with the GP about what to do to get my health back to normal.
I explained that I wanted to try combined T3/ T4 therapy. He was not overly enthusiastic as he has not got any other patients on this type of treatment however I was able to counter any objections he put up against my request and he in the end agreed and gave me a script for WTE 32.5.
I have taken the WTE in conjunction with my Synthroid for a full week now and I do feel much better. I had to reduce the dose of Synthroid though as initially ( on day 1 and day 2) I noticed itching around my breasts – I determined that I was having too much meds.
Since reducing the Synthroid I am firing on all cylinders at 75mcg synthroid together with 32.5 WTE daily. It is my intention to gradually ( over a month or two) to phase out the Synthroid altogether. Now will have monthly bloods done till I get to be bang on with doseages.
I approched the Dr with ” I really need you to work with me on this as I do not want to waste another year feeling like crap, I am prepared to face the consequences if I am doing the wrong thing, but I cannot go on the way I am at present”.
He was very good about it – so different to the way I have been treated ( or felt I was treated) before.
Good luck to you all.

November 11, 2008 at 7:51 pm
(676) jilly says:

Goldshield is now fully funded as an alternative. It is “stronger” than Helltoxin, perhaps because the uptake in the body is better. If you change to it and feel hyper or have side effects, our friendly chemist has advised us to reduce the dose by half for 10 days, then 3/4 dose for 10 days, then full dose for 10 days, then have a blood test.

November 12, 2008 at 6:51 am
(677) stellaseymour says:

Great to find this site again, Hello Jellyjill.
Since reporting feeling great on 32.5mcg WTE plus 75mcg synthroid I noticed that a day or two later I felt not too good at all with severe palpitations and itching boobs. I reduced the synthroid to 50mcg but this only made it worse so on advice from PCNZ I have increased WTE to 65ncg daily plus 50 Synthroid and feel muuch better again – it is a fine balancing act to get doseages right when your GP is uninformed. Thank goodness for PCNZ

November 13, 2008 at 7:12 am
(678) Angela says:

Jane and Pauline
how are you both doing?

November 14, 2008 at 3:53 am
(679) Pauline says:

Hi Angela…and all;

I guess it’s early days yet, but I feel a bit better than I did a couple of weeks ago. I had my second chemo a few days ago (4 more to go!!! ugh!) and I am on a low steroid dose, which I did not want to take. It does seem to make me be a bit more active as recently I have been sleeping most of the time. John goes on and on about drinking, which I have to, to flush the chemo stuff out of my system before it wrecks my kidneys. I am still on 100 micros of levo a day for my thyroid and apparently that is now back to normal. I have to admit I am still on Goldshield, which (for anyone who is wondering) does appear to be working for me. Unfortunately I have so much else going on in my bod, that I’m not too sure what to poke the finger at!!! I guess it a case of one day at a time. I felt great this morning, but now – not so great!! My GP did say there is hope that I should recover comparatively well, but it’s going to take a while.
At least it’s good to see some people are getting their life back to something approaching normal..
Keep it up guys!!

November 21, 2008 at 6:22 am
(680) Pauline says:

Hi All;
How is everyone doing at this time as it all appears to have gone quiet. What is happening on all fronts??

November 21, 2008 at 4:18 pm
(681) Dawne says:

Hi Pauline, Caitlin and All,
Hope things are coming right for you all now. Two weeks on from going back on Almus things are settling down again. Maybe down the track I will give Goldshield another try but just enjoying being able to do a days work again,to be sleeping and gradually putting on a little weight. The thing I enjoy most is an inner relaxed feeling and enjoyment of life which to be honest I haven’t felt for many years. My only problem seems to be a swelling of the face first thing in the morning left over from GSK pill on some days. Pauling I do hope things are coming right for you.

November 21, 2008 at 4:35 pm
(682) Pauline says:

Hi Dawne and All;

Probably but for my legs giving out now and again, I don’t feel that bad. I hate with a passion going to the hospital as everytime I come away from there I think I feel worse than when I went, apart from the physical. I was a knats whisker off of having to have dialysis treatment. I still can’t stand drinking the water, even the filtered water or the stuff from the supermarket. It all tastes foul!! I drink a lot of diet tonic water (without the gin)!!! The Goldshield levo appears to be working ok. Next month I have a couple of visits to Oncology for the chemo, I am not looking forward to that!!! One at the beginning and one, last day of the year!!!!
Hey Christel if you’re still on.. How’s the dog doing. Did you change the medication??

November 21, 2008 at 9:16 pm
(683) Caitlin says:

Quick catchup. Guess everybody is quietly trying to come back to norm. Have to say the Almus made me feel excellent-even that contented full of enjoyment feeling someone else mentioned. I’ve been on the generic Gold Shield – its definitely not Goldshield, for 28 days and my eyes are itching and I’m feeling really bitchy. Even a bit achey. Hoping its a temporary thing caused by changeover. Have changed wk computer to smaller screen and the font is all scratchy so might explain my headache. Also hubby in hosp so bit uptight with late nights. Going to wait till I finish the full three months and then assess. Loved the Almus – felt so fantastic. Pauline pleased to hear you are moving forward even tho slowly. Sympathise about the chemo tho. Couple of nasty events to get thru on your way to good health. Have a vague memory of a natural product that stops the after affects. And it worked really well.Just asked my son-it’s fresh wheatgrass taken each morning as a drink. Energy boost and somehow helps with the nausea. My back pain has been put down to- damn there goes the memory- ummm oh shingles. No blisters tho so must be internal I guess. Gone now. Well love to all and I wonder how many of us now argue back with doctors and pharmacists alike. I know I’ve made a few comments to seemingly uncaring people, inc dr and chemist. Not worried about making an idiot of myself anymore -its MY health! Cheers

November 22, 2008 at 3:49 am
(684) Angela says:

Dawne
where did you get the almus from. i am really worried about a friend of mine who was badly affected by the eltoxin, went onto goldshield was much much better, then had to change to synthroid and now on the ‘new’ goldshield and not doing at all well. why did they ever change it, has totally messed with peoples lives, and in her case broken a relationship. no one seems to have complained about almus – is it readily available?

November 22, 2008 at 3:23 pm
(685) Dawne says:

Hi Angela. I have a wonderful chemist who said he would order it in for me. He wasn’t sure how to go about it so he rang Allan who advised him. It was a huge relief for me to go back on it. I feel for your friend. Wish her the best for me will you.

November 22, 2008 at 4:14 pm
(686) dawne says:

Dawne
Thanks.
i have your email somewhere dont i, (fogged memory)? can you tell me how much it cost you and what area you are in. I am really very worried for my friend, when you get in that low place it is very scary and hard to get out. she is 40kg and still losing weight.

November 22, 2008 at 5:53 pm
(687) Dawne says:

Angela. I’m in the Tararua area. Was on Pat’s list and yes I think we did share a couple of emails. I have to admit by the 4th day on Goldshield I became very worried and wondered if I was going to last through the night. Only got through the remaining days waiting by taking the pill directly before eating breakfast.

November 22, 2008 at 5:59 pm
(688) Dawne says:

Angela. Sorry I forgot to mention cost. Approx $22 a month for 28 pill pack.

November 23, 2008 at 5:11 pm
(689) Janice says:

Hi all, glad to see that we have got going again. I have been on the “new” Goldshield now for a few weeks (nowhere on the packet does it say Goldshield – something from Forley Generics Ltd, Levothyroxine) but feel I am not doing so well again. I seemed to be going much better on Synthyroid and I am considering going back on that again, despite the cost. On the new stuff I seem to be going back to a negative way of thinking. I will think I will go and do something – like vacuuming (I know we all can talk ourselves out of that), and I just sit back down again. I am also very tired all the time even though I seem to be sleeping OK, and have itchy eyes again. The weight is going up again, which is another worry. I see that the “new’ pill has also got the magnesium sterate in it as a filler, and I suspect that may be the problem again. The Synthroid has magnesium citrate as filler, which is what the original ones, before all this mess started, used. I haven’t caught up with the Almus yet, what is it and where does one get it?

November 23, 2008 at 6:44 pm
(690) Dawne says:

Hi Janice. sorry to hear you’re having problems as well. If you were doing great on Synthroid it has come down in price, or is about to, to about $15 a month and is supposed to be easily available unlike Almus. It sounds like quite a few are going back on their originals. Changing brands isn’t good for you so it pays to find one that suits you and stick to it if it’s affordable. Good luck and hope you start feeling better very soon. What a waste of a year we’ve all had!!

November 24, 2008 at 1:18 am
(691) Pauline says:

And so say all of us Dawne – what a waste of a year this has been for a lot of people.
Janice.. Dawne is right about sticking to the brand that suits. I have to admit you seem to reflect the same probs I had with the original Goldshield, but I’ve seemingly come right. While I was in hospital I was on Almus that seems to work very well. Almus is still available from Alan Campbell at Tamuka, while the original Goldshield was available from La Hoods, down south… Not sure if it still available though.. need to check up.

November 24, 2008 at 2:24 am
(692) Helen says:

Hello Everybody I have just come across this site by accident. And guess what you all have
me thinking about my thyriod medication. I live
in Australia and has been on Oroxine for the
past 6 years that I have lived here. Originally
from South Africa. I have been on Eltroxin in
S.A. since 1992. To make a long story short,
out of the blue I became this person that just
want to sleep with joints so painful I can
hardly move. My vision has gone as well. I now
go for an eye test every year where as before
I used to go every 2 to 3 years. When did this
happen? Well, since I have been in Australia I
have been ill. Doctors blame depression, which
I am, but my god, I want to die now. Well that
was until 4 days ago. I ran out of my tablets
and not feeling like going the the pharmacy I
just didnt have any to drink.And guess what???
Today is Monday 24th November 2008, and I feel
so much better. No blurry vision, no headache,
joints still stiff but I am not asleep at all
today. Surprise!!! I think it is the thyroid
tablets that started to make me sick 6 years
ago. I have landed countless times in hospital with heart palpations and I suffer
from dizzyness. So bad that I had a bad fall
this year and injured by foot badly. When in
hospital, they discovered my sodium level is
very low!!!!!!!!!!!! I think the meds companies are making us sick. And we are not
educated enough like doctors should be.
Good luck to everybody. I am off to find a
new cure for my thyroid. Even if I have to
go the coconutoil route. Thanks for all your
postings. It was an eye opener for me!!!!! And
I am telling all my friends.

November 2, 2011 at 2:53 am
(693) casmy says:

the med companies are making us sick…..period. time for the people to wake up and make a diference….tell to everyone you know to search for the truth, knowledge make us free…

November 24, 2008 at 2:30 am
(694) jilly says:

How strange that many of you are finding problems with the new Goldshield. Allan assures us it is the same as the old, but with different packaging for the NZ market. Makes one wonder if he has been told the truth by the manufacturers.

November 24, 2008 at 5:09 am
(695) Heather says:

Hi Fellow sufferers
I have not commented on this site before but been following with interest as I have also had terrible year and your postings have really helped me.I have no thyroid and have taken thyroxin for 12 years. When on new formula GSK had all the bad symptons mentioned, tried Goldshields (6 wks) was better but not great. When no Goldshields available was put on Synthroid and at last felt pretty good, then back onto ‘new’ GS (Forleys) and within 3 days became very very ill and getting worse each day.Couldn’t believe it was the new GS as supposed to be same, got some original GS but the body wouldn’t recover and kept getting worse. After 3 weeks and in sheer desperation I had a few Synthroid left so started back on them. 3 days and I was a different person and feeling great. Have tried several chemists but they can’t or won’t get in Synthroid. Maybe I should contact Allan or does anyone know a chemist who will supply them.

November 24, 2008 at 9:19 pm
(696) jilly says:

Yes, Allan has both Synthroid and Almus from what I undestand.

November 25, 2008 at 2:09 am
(697) Angela says:

Helen
can you get whole thyroid over there? most people who have had trouble on the synthetic drugs here have found that to be an option. The synthetic one that seems to have no problems yet appears to be Almus. Be very careful about the low sodium, that sent my mum into hospital for over 4 months, not good!!!!!

November 29, 2008 at 5:40 pm
(698) sasha says:

I have been on eltroxin since the past 8/9 years. Although my energy and confusions seemed 2 have improved with this drug, I’ ve still had other problems such as weight gain, weak muscles, high pressure, hair fall and dry skin.Hoeveer I was wondering whether these recent side effects to eltroxin occured in NZ alone, ehere the drugs were localy made. The eltroxin I take is manufactured in Germany.So, will this batch of eltroxin drugs be defective as well?

November 29, 2008 at 7:55 pm
(699) Dawne says:

Sasha. The GSK thyroxin that we have had all the trouble with was said to be manufactured in Germany. It was only after they changed countries for manufacturing that we had any problems. This was in late last year.

December 3, 2008 at 7:39 pm
(700) jilly says:

Sasha, sounds like you have the side effects. I would suggest you discuss this with your Dr and see about changing to Goldshield (which is funded) or another alternative.

I am having great success with Whole Thyroid Extract, however it is not funded.

I am also now taking adrenal support as my adrenals sure got kicked around this year, trying to cope and support the thyroid gland.

December 4, 2008 at 12:25 pm
(701) carol england says:

My beloved aunt in New Zealand had severe problems with this drug. She said they switched it. She was on synthroid for decades. People should be allowed to choose what medicine they want to take AND in my opinion, be able to obtain it without a prescription once the initial diagnosis or first use has occurerd.

December 5, 2008 at 9:32 pm
(702) stellaseymour says:

I agree Carol. If one is diagnosed with an incurable disease such as Hypothyroidism that requires medication for the rest of one’s life then one should not need to consult the doctor every time a change of dose or blood tests etc are necessary.
This would of course impact negatively on the medical practise’s cash flow so one is not hopeful of any such arrangement taking effect.

December 7, 2008 at 11:13 pm
(703) Lorna says:

Sasha What country do you live in?

December 20, 2008 at 2:56 am
(704) Angela says:

Pauline wishing you a Merry Christmas. Hope you are feeling much better by now. Do you have any more chemo?

December 20, 2008 at 4:22 pm
(705) Pauline says:

Hi Angela and All..
I have 3 more chemos to go, one the last day of this year and then Jan and Feb 09. That will be it for that (I hope). I am also on steroids which goes hand in hand with the chemo. I hope that will stop when the chemo stops. I have just recently started neo-recorman. Because my kidneys are not working properly they do not send out the hormone to make red blood cells hence I am (or rather was) quite anemic. So I do an injection once a week, along with a variety of blood tests. I am currently on Goldshield (not the generic one) but had to increase to two every other day as my levels were dropping. Other that that I am feeling reasonably back to (almost) normal.
I hope that you and all other readers of this have a great and (more importantly) safe Christmas for 2008 and a very much better and happy new year for 2009.!!
Finally thanks Mary for opening the eyes of the world to the Thyroid and the problems it can create.

December 20, 2008 at 6:00 pm
(706) Dawne says:

Pauline, good to hear things are improving somewhat for you. Do hope it keeps on that way for you. Angela how is your Mum doing now? What a year it’s been for so many and the left over effects are still with many of us. I guess we’ll never get the answers as to how badly we all have been left affected and whether it will be long term or not. For me the good days are wonderful but then suddenly for no reason a few bad days remind one that things aren’t right yet. I wish you all a very merry Christmas and hope for all of us that next year will be a great one.

December 22, 2008 at 3:22 am
(707) Angela says:

Hi Dawne
Mum is doing extremely well, she has her last checkup at the specialist tomorrow. she is a lot more steady on her feet and can even walk small distances without a stick, before was reliant on the walking frame. we have just come back from my nieces wedding in the south island, something i never thought she would be able to do.

December 22, 2008 at 3:29 am
(708) Angela says:

Pauline all the best for your next lot of chemo. Will be thinking of you. I hope your troubles are over soon and 2009 will be a much better year.
Has everyone sent in their reports to CARM and the Health and Disability Commissioner?

December 31, 2008 at 12:47 am
(709) Dawne says:

Happy New Year to you all. This surely has been a year we will never forget. Thankyou all for your advice and help over these last months. Knowing others are out there going through what you are has been what has kept me going. I know I am a much stronger and more forthright person for the experience so at least some good has come out of it I guess. Good luck for 2009.

January 30, 2009 at 3:30 pm
(710) denise says:

Hi lm in the uk had a tt july 07… l am still not right!!! I take levothyroxine by actavis.. should alram bells be ringing for me too? Thanks if anyone replies x

January 31, 2009 at 1:05 am
(711) Dawne says:

Denise, UK. I,along with a few others have been lucky to be using actavis and haven’t heard of anyone having any problems with it. After trying and having problems with others available my chemist imports it for me.

January 31, 2009 at 3:11 pm
(712) Dawne says:

Denise. I should have also added that it was the Glaxo Smith Kline Levothyroxine only that made us all ill. Because it was the only govt supplied one at the time we all had to take whatever was available to buy ourselves until an alternative was supplied. It was during that time I was given actavis and found I felt better on that than I had for 15 years since my TT when I was on the the original GSK one that we all took on account of no choice. It was only after GSK changed the formulation in 2007 of the pills that the bad effects took hold on us. Hope this has set your mind at rest.

February 7, 2009 at 1:12 pm
(713) maplegirly says:

Hi, I live in the U.K. and was diagnosed hypothyroid after the birth of my first child. I am in my late 30′s. When I found that thyroxine was not working especially well for me, my endocrinologist put me on Eltroxin last summer. Since then I have been anxious, sometimes feeling the blues, cannot lose weight, have dizzy spells and lately keep forgetting what I have gone into a room to do; I keep having recurrent foginess and short memory loss. This happened AFTER I WAS PUT ON GOLDSHIELD ELTROXIN, NOT SMITHKLEIN. I know a lot of people are thinking that Goldshield Eltroxin might be better than SmithKlein, but I DO NOT think this is true, at least not for me. The Goldshield Eltroxin has been ruining my health to no end; my health has deteriorated dramatically; I am going to see my doctor on Monday and see if she can help. Although I have been telling my G.P. doctor for many many months that Eltroxin has been causing me a lot of anxiety for no reason, no one has taken it seriously. I cannot stand living like this a minute longer. Can anyone recommend an alternative to Eltroxin and Thyroxine? Has anyone successfully tried Armour or whatever it is called or another type of hypothyroidism drug that works for them? I HATE ELTROXIN!

February 7, 2009 at 7:18 pm
(714) Pauline says:

Hi All;
Good to see Dawne and Angela still with us, it’s been a while since we’ve chatted on here.

Maplegirly, a bit of a concern about your Goldshield Eltroxin problems. Armour has been tried here in New Zealand, with from what I understand some success. Back a few months ago the Goldshield Eltroxin was a saviour for a lot of us who had been given the horrible stuff, that was also called Eltroxin. I am now on Forley Generics Levothyroxine which from what I can see is pretty well the same as thew original Goldshield except the Goldshield was packed in a creamy box and the Forley stuff is in a Blue and White box of the same dimensions. I think Dawne back on [702] mentioned something about Actavis, which is another option available in UK. That comes in a smaller grey packet (or it did) and is available from Actavis, Barnstable, EX32 8NS, UK.. It’s called Almus as well. This also seemed to work well for me. However Denise from your end of the world seemed to think it was not working for her. It’s a case of “shopping around” to find out what “shoe fits your body” For some reason or other doctors all around the world appear to be a little backward about the Thyroid, unless you’ve got a doctor who thinks outside of the box that is! A lot don’t appear to have a clue about what they are prescribing – you know possible side effects etc… Read some of the previous threads on this blog..It just might help. In passing I am on 150 microgrammes daily of the Forley that seems to have stabilised my system.

February 13, 2009 at 7:12 pm
(715) Maria M says:

I have just been reading through the comments regarding generic thryroid tablets and number 86 Catherine comments have shocked me as I have exactly the same symptons i.e. blurred vision. I have been changed to Levothyroxine tablets (Activis) and have put weight on (despite exercising 5 times per week) skin has got drier and head is ‘fuzzy’. I am waiting to see an endrocologist (I have an appointment in April) and just thought that my level needed increasing or that I should be looking at T3. However thanks to the information here I will be asking about the Legvothyroxine tablets I am taking and insisting on a different brand!

February 18, 2009 at 8:33 pm
(716) Pip says:

I’m new to this site but thought I’d share my experiences with altroxin. I have hashimoto’s thyroiditis and have been on some form of thyroxine medication for 47 years (first diagnosed as hypo-thyroid at age 7 but not tested for hashimoto until 21). The first problem experienced with the drug change in NZ was that I was never informed of the change of medication and the resulting change in instructions. And after 47 years you’ve long ceased looking at the small print on the bottle. It was only following the publicity on altroxin that I checked to see what I’d been prescribed and discovered the change from taking 3 times per day to taking all at once on an empty stomach. I am very unimpressed with that total lack of notification from anyone in the health industry.
The 2nd probelem is that like many others have found with the change to altroxin, this past year has been difficult, I’m the heaviest I’ve ever been, no energy, life an uphill struggle, and I’ve hated it. The weight seems impossible to shift. And yet the blood tests have shown only a slight change.
While our responses to this drug may be anecdotal, I do feel my long experince in this area gives a sound basis for comparison to what we were prescribed in the past.
Now some good news – since I’ve made a concerted effort to take the tablets on an empty stomach first thing and then not eat or drink anything for an hour, I have noticed an improvement in energy levels. Better but still not wondeful. Completely thrown my morning routine but we’re adjusting.
Just to share – while altroxin has its problems its still far superior to what I was given for the first 5 or so years – not artificial thyroxine (I doubt it existed) but thyroid extracted from dead sheep goitres! I’m pleased to have escaped BSE – mad cow disease – so far.
My experiences with hashinotos and being hypo-thyroid (and I do get hyper-thyroid at time too) is that few medical practioners know a lot about it, its not usually life threatening, and so as long as your blood tests are within an acceptable range then its assumed you must be ok. Its not until the internet and sites such as Mary Shomon’s that I’ve learnt anything about this disorder. It’s been great to discover there are all of you out there.

February 19, 2009 at 7:12 am
(717) Kim says:

Hi, I am new to this site but have been reading with great interest. I am from Australia and both my daughter (16) and myself (42) take oroxine/eutroxsig respectively. I am wondering if anyone has had any adverse effects from these drugs? When my daughter was 12 she was diagnosed with hashimotos and tsh level was 11. Her GP put her on 100mcg eutroxsig straight away. After four weeks, she became psychotic. Very physically and verbally violent. Opposite to what she is normally. Her blood tests revealed no abnormal levels and she was admitted into a psych ward for treatment. To cut a long story short, she was taken off all medication and made a full recovery. It was decided she had too much eutroxsig too soon. Six months later her tsh levels rose to 96 and she was again admitted to hospital. Oroxine was given very slowly along with an anti-psychotic drug. Once her thyroid levels were ok, she was taken off the anti-psychotic medication and she has been fine. This was three years ago. Now she is back in hospital. I am lost. Interesting to me is she started a new box of oroxine mid jan 09 and since then, I feel, she has gone down hill. Fatigued, depressed, hard to swallow, weight loss, loss in concentration, vagueness, giggling inappropriately, can’t sleep and became violent breifly. Could there be a bad batch of oroxine out there? has anyone else heard of this? thanks, Kim. x

February 20, 2009 at 4:22 am
(718) Pip says:

Kim re your daughter – the following is a quote directly from Wikipedia “Hashimoto’s thyroiditis is often misdiagnosed as bipolar disorder and, less frequently, as anxiety disorder” Your daughter’s symptoms are being diagnosed as a mental disorder but I stronlgly suspect that she is cycling between being hyper and hypothyroid. I have very good friends who knew me way back when I was a teenager -they tell me they thought I used to overdose on my medication as every so often I was so “over-the-top”. I was diagnosed as being mildly bi-polar in my 40′s and drugged accordingly. I no longer accept that diagnosis – I think that we continually cycle between being hypo and hyperthyroid and with age come to accept and live with the challenges those two states bring. Be there for your daughter. Challenge the medical diagnosis. Access all the data you can find on the internet.

February 21, 2009 at 4:48 am
(719) Angela says:

Kim, i dont know about any bad batches of Oroxine but when we were given the eltoxin in NZ there was definetly something very wrong with it and the symptoms your daughter has are exactly the same as what happened to my mother. she is perfectly fine now on another brand. One size doesnt fit all as we have all found out and what suits one person may not suit another. Fight for your daughter as I am sure it can be sorted out with a change or different dose of medication. One thing that my mother had was a very low sodium level since taking the etoxin which contributed to the psychotic behaviour, may pay you to get this checked. Incidently my mums tsh etc were fine.

February 23, 2009 at 7:25 pm
(720) jilly says:

Hi all. Those of you in Australia and England having problems with drugs that apparently have not changed – I think you should find out if the formular has changed. Your chemist may be able to tell you, or the government department you have that approves drugs (like we have Medsafe)

Few New Zealanders were told the formula had changed, they were given words like – “it’s changed colour but is the same” so we trusted them and took the new ones – not realising the damage they were doing. So – find out.

Ask your chemist what brands are available. In England I have read that you are about to have major problems with diagnosis and availability of medication. Please read this on this site.
http://thyroid.about.com/b/2009/02/18/united_kingdom_thyroid_guidelines.htm

That is very scary and I suggest you join a group fighting this. Not all people can convert T4 to T3 – I am one of those and need either whole thyroid (taken from a pigs gland, not bovine) or a synthetic T3 if I was on synthetic T4.

Untreated or poorly treated hypothyroidism can cause symptoms of depression, paranoia, moodiness, etc. Often the Dr will say the thyroid tests are “normal” however, their belief of normal is based on tests not symptoms. For many people, like myself “normal” is a TSH of 1 or less, yet the “normal”range is up to 3 or even 5 – so if I was 5, I would be feeling very ill indeed.

Again on Mary’s site here, there is info about the tests, take particular notice on “free T4 and “free T3″

Keep fighting to have your symptoms fixed, rather than adjusting to the tests.

February 24, 2009 at 5:03 pm
(721) Janice says:

Hi all, glad we are back in touch. Good to see you Pauline and to hear that you are coping with your treatment. I found an article on Mary’s site that was about a small trial (12 people) taking thyroxine at night instead of in the morning. I have always taken mine for over 30 years first thing in the morning at least ½ hour before breakfast. For the last week I have been taking it at night just before bed and I am definately feeling much better. I wake up in the morning without that awful ‘Blah’ feeling and with far more energy and enthusiam to face the day. I have noticed that I get more tired by the late evening, but I will certainly keep it up. There was also a bit in the article about calcium impairing the absorbtion of thyroxine, and as I have to take calcium for the lack of bone density, due to the thyroxine, it obviously was not a good idea to take calcium at the same time. I am still paying for Synthroid ($114.00 month) as I was allergic to the Foleys. If anyone can’t find the report on the trial and would like a copy you can contact me on cronedat.xtra.co.nz (you will need to change the at of course).

February 24, 2009 at 8:42 pm
(722) kathie says:

hi I live in Tasmania I have a daughter that has been diagnosed with hashimoto thyroidites
when she was 6years old and know my daughter is 18years old and no one will listen to me on the side effects,
Ihave been to dr after dr endocronologist, natural therapist all saying I have a naughty child go home.
side effects; HEADACHES, CAN’T SLEEP, MUSCLE PAIN, PARANOID, CRABBY, CRYING OUTBURST, ITCHY RASHES ON ARMS, DRY HAIR AND SKIN,CAN’T THINK PROPLEY, TEMPER.

When my daughter goes of Oroxine 100mcg and on Eutroxsig my daughter is much happier when not on any medication any funny thing No side effects. BUT can’t do with out hormone replacement.

At the present moment the dr whant’s a sychiatrist to do an assesment because she is going mad on these medications.

please can anyone help me please help.

I have tried pig hormone sent her mad
I have tried natrapaths didn’t work.
I have tried centrum
I have tried hypnotherapy,crystal healing, voice analysing,massage.

You name it I have tried.

There is a natural supplement from the U S A
called THYROMINE on the internet and wondered if anyone knows or has tried this natural thyroid supplement.
I am at my endswit please helpme please.

February 25, 2009 at 2:04 am
(723) Pauline says:

Hi Janice and everyone else;
Good to see the blog in motion again. However you overseas guys (from UK , Aussie and Tazmania) are a bit of a worry.
As an aside for all the NZ’ers it appears there are now 4 different types of Thyroid medication available through the system, which is a one zillion percent improvement on a few months ago.
To be quite honest, medical professionals across the globe appear to be still very ignorant of how to treat Thyroid problems (outside the box). There are a few doctors who DO understand the problems associated with Thyroid medication, but are afraid to look beyond the ordinary. I really feel for those who have recently contributed on this blog, as I think a lot of people in New Zealand will know what they’re going through. Has as been pointed out way back down the track, changing medication is not a five minute check, it can take quite a few days, even weeks to make sure what you are currently taking is working. Now one here on this blog will say they’re an expert, but I think a lot of people can say they have gained a heck of a lot more knowledge from reading back through the threads, than being told by one’s doctor that their time is being wasted and you have a naughty child! That would annoy the hell out of me!! In fact a letter to the Minister of Health may help soothe things somewhat. That’s what they’re there for!! In passing Kathie (713) do you have a Medical Centre for reporting adverse reactions to drugs. We have a place here in NZ called CARM, to which you can report. At the height of the Thyroid nedication saga CARM were inundated with calls.
Hang in there and stay on this blog.

February 25, 2009 at 3:09 am
(724) kathie says:

No i don’t no of any medical centres here in tasmania.
12years my daughter has been on thyroxine and no is 18years of age and has had enough.
the qaulity of life is irritable all the time mood swings the list goes on.
I seen this thyroid add on the internet I’m not one for the internet this is the first for me, but i can’t sit back and see my daughters life go down the tube.
when of the medication she is fine, but need hormone replacement.

February 25, 2009 at 5:32 am
(725) Jenny says:

Hi Kathie, I really feel for you and your daughter. It looks like your daughter’s seretonin level could be very low due to the problem with thyroid, especially the mood changes and inability to think. See if you can obtain some good quality edible coconut oil, preferably virgin coconut oil, and give her some of that. Two to 3 tablespoons a day but best to start off with about 1 tspn and gradually work up from there. Coconut oil is a thyroid and seretonin booster, and although it will not be a ‘cure-all’ it just may help until you can find some one who will listen and can sort her meds out for her. It can be taken many ways; in drinks hot/cold, smoothies, straight off a spoon, and if she has porridge in morning just stir some coconut oil in before you transfer it from pot to bowl. If your daughter finds that she is unable to tolerate the taste of virgin, you can get deodorised coconut oil, just make sure it has been deodorised by mechanical or natural method and not chemical. I too suffered from the generic levothyroxine but my problems were very mild compared to the ones I have read. I put that down to my daily consumption of coconut oil. As I live in NZ I do not know what brands are sold in Tasmania, but I am sure you will find some. Try your health shops.

February 25, 2009 at 3:28 pm
(726) Dawne says:

Hi Kathie (Tasmania). I am so sorry to hear about your daughter. What a worry for you. I don’t know anything about Hashimotos, I have had my thyroid totally removed, but am one who was affected badly by the change of meds here in NZ and like so many of us have learnt a lot about thyroid problems and meds through the fight for change. It must be very hard for her if her meds aren’t suiting her along with being 18 years old ( I remember when my granddaughter was 18 and the ups and downs in mood swings they can have.) Her symptoms sound like the meds aren’t doing the job as they should. Are you aware that many other medications, health products and even some foods can affect the effect of thyroid meds on a daily basis? For example antibiotics, antidepressants, vitamin supplements etc. As Eutroxsig has been passed here in NZ for safe use I looked it up on the net as we are all very cautious now what is in the pills. They give a lengthy list of things that can alter the intake of the pills. I would suggest you google thyroxine and you will find a huge amount of information to help you. Also we have learnt to quietly stand our ground with the Doctors over here and to make our own decisions about what we put in our bodies.Many of us were offered antidepressants when we first began the fight for another med. And refused them. I have finally found the meds that work for me but have to have them imported. On others I tried I was like your daughter, very emotional and unwell. Now I find by getting the right medication to suit me I am a calm person again as I was before I had the op. Good luck in your search to help your daughter. Keep us posted how you get on.

February 26, 2009 at 4:30 am
(727) kathie says:

hi jenny 716 thank you for your time to write much appreciated.
i will try and get some coconut oil from my health shop and give it a wirl, can’t hurt to try.

hi dawn 717 i am going to a new dr next wednesday he is a dr who believes in natural products so we will see what happens.
my daughter was told from her dr to see a syciatrist this week to put her on antidepresents so she can stay on thyroxine, cause there is no other replacement therapy.

what a live for people with thyroid condition there not mad.
just medications we have tried chemical wise she has a reaction to.
her levels are fine on thyroxine but she has so many problems with this and other thyroid meds.
keep you posted
thanks a bunch
realy big thanks
its nice to no someone cares :]

February 26, 2009 at 2:56 pm
(728) Janice says:

HI Kathie, your last ten years must have been a real nightmare, how are you holding up?

Jenny’s suggestion of coconut oil is a good one. Even using it on the skin helps and also can mitigate the dry skin condition. Using it this way you can add a few drops of essential oil like Ylang, Ylang or Neroli which is good for its relaxing and rejuvenating properties.

If you change the time of taking the thyroxine from morning to bedtime it may make a difference. It certainly has with me. I can’t believe how well I feel at the moment, I haven’t felt like this for years. It is like a switch has been turned on (or off) in my mind.

The other thing is you could set up a Google Alert for Hashimotos. This will mean that you get an E-mail every day with all the new references to Hashimotos that have come up on the net in the last 24 hours. A lot of it won’t be what you need to know, but there could be some really good ways of coping among it. I have got one set up for Thyroid and have learnt a lot about thyroid conditions since doing it.

Hi Kim, this may help you and your daughter as well.

February 26, 2009 at 8:18 pm
(729) kathie says:

janice, thank you for your suggestions.

you just keep on going one day at a time not given up there has to be other options available that we don’t now of.

my daughter says her head hearts can’t think my daughter has a learning problem and is very frustrating cause she can’t think.
BUT when she goes of thyroxine she is the best child it’s a pleasure, BUT then her hormone don’t like it can’t function, then you have the behaviour problems and the head hurt’s and can’t get out of bed cause she is to tied.

But there are worst of people than us and i appreciate everything we have we will keep on keepen on. that is the Tassie spirit.

She’ll be right mate.
you just live with it and be thankfull for what we have.
i got on this sight to see what other people are going through as well and that we are not alone on this.

March 5, 2009 at 11:05 pm
(730) Kim says:

hi everyone, thanks for all your advice. My daughter is home from hospital after a 3 week stay and is slowly rehabilitating herself back into life. No-one can tell me how this all started, but I have been digging around a fair bit. I contacted Sigma (pharmaceutical company)regarding the oroxine and they have assured me that the active and in-active ingredience have stayed the same with both the oroxine and eutroxsig. I replaced the old box of oroxine with a brand new one 18 days ago…and low and behold, she has been improving since. She’s almost back with us fully. Doctors are thinking she has a mental illness, but the symptoms don’t match anything. You know, never doubt your instincts. Follow your gut. We have lost only a few weeks, I can’t imagine what it would be like to be that sick for longer. You guys are heros…thanks for being there :)
kim
x

March 6, 2009 at 3:56 am
(731) Carole says:

HI All,
Well, this site blew me away, been on Thyroxine in Australia for 28 years, been quite okey apart from feeling awful when the bottom of the bottle was reached and finally throwing away the last 1/4 each month as knew I wasn’t right (despite one doctor saying “rubbish”) anyway, last time I got my script (Dec 08) it had changed from a bottle to blister packs, six to twelve months previous to this I suddenly started getting headaches (never before) had MRI and CT nothing. Then I got positional vertigo, each test since 07 says “over replacement” and yet I feel absolutely awful on 120mcg and ache in most joints. I feel much better at 150mcg. I am relatively post menopausal. Is there any group post for Western Australians, or infact, any Australian group that has been set up with this disgraceful messing of our tablets that are supposed to make us feel well, not sicker. Thanks in advance and fabulous reading from this site.

March 7, 2009 at 12:46 am
(732) Angela says:

kim, my mum spent 5 months in hospital, 4 of them in a psychiatric unit. the doctors there said she did not have dementia and although the psychosis got worse in hospital they said she didnt fit the normal pattern of other patients with mental illness, she didnt respond to the usual treatment. She is now doing really well, but the eltoxin took a whole year out of her life. Dont let doctors give up on your daughter, if the thyroid is not treated properly we become very unwell and that doesnt help when the tablets we are being given are suspect or substandard. Thinking of you and your daughter.

March 10, 2009 at 6:29 pm
(733) John says:

This problem seems to be widespread. I purchased Eltroxin while working in Taiwan and experienced chills, severe confusion and joint pain. I have previously taken the old formula without problem.

March 10, 2009 at 9:40 pm
(734) Marie says:

I’m a 26 yr old Canadian and I started taking Eltroxin 3 weeks ago 50ml. I am already experiencing daily head aches, crazy mood swings and depression….and I’m supposed to take this pill for the rest of my life?

March 12, 2009 at 1:32 am
(735) Angela says:

Marie and John
was this the gsk eltroxin?

March 18, 2009 at 1:50 am
(736) Debby says:

Hi, a very interesting site, I have been on Thyroxine for 20 years, and have not taken too much notice of the brand of thyroxine … however did experience sleeplessness, mood swings, teariness, tiredness … today I have received a prescription for Levothyroxine TA 100mcg (LEV GOL), from UK Company “Forley Generics Ltd” …does anyone know anything about this brand/type …Thanks

March 18, 2009 at 5:07 pm
(737) Dawne says:

Hi Debbie. I presume you are from NZ and would have been on the new GSK version of Levothyroxine since last year when they changed over and the problems began. If so was it only from that time you have been experiencing the symptoms? The Foleys Goldshield is the one that has also been subsidised and many find it works great for them. It has also been noticed that the body seems to metabolize the Goldshield much better and can appear in some cases to be stronger than other brands. If you seem to be getting hyper when you first start the advice has been to go to a lower dose and work up over a couple of weeks. However not all have this trouble. Check with your Chemist or Doctor if this should happen. Also when changing from one brand to another it can take many weeks before the old symptoms are gone. The general advice is once you find a brand that suits it pays to stay with it as it’s not good to be changing brands as each can vary slightly in strength. Hope this helps and hopefully someone who is actually now using Goldshield Foleys will come on line with better advice for you. Good on the Doctor or Chemist who decided to give you a change from the GSK. Good luck.

March 18, 2009 at 5:12 pm
(738) Dawne says:

Debbie. Just realized my mistake. It was later in 2007 that the change over in GSK pills occurred. The 100mcg pills then changed from yellow to white.

April 10, 2009 at 10:14 am
(739) Karoline says:

Hi all, I am writing as a new scared and apprehensive ELT Levothyroxine taker.
I am 28 years old and was diagnosed with Hyperthyroid 4 years ago, a year after the birth of my son. I was treated by a radio active iodine drink and then was diagnosed with hypo thyroid disease.
Being scared of taking a tablet daily for the rest of my life I tried to beat it by exercise and healthy exercise, this did help stabilize me (mostly) up until 3 months ago.
I started to suffer the ‘normal’ hypothyroid symptoms but stronger than ever before, the most outstanding being, unusual basic talking mistakes, lack of concentration (which is very unusual for me) a 7kg weight gain in 2 months (after significant weight loss exercise and healthy eating), undeniable elevated stress and major mood swings.
I went to a new doctor (as I moved cities) and was diagnosed again with hypothyroid disease and I have been taking one tablet daily.
I have been taking Levothyroxine (ELT) for 10 days and will keep you all up to date with my progress…as a type of test for us all.
Thank you to everyone on here as I now know what to ask my doctor and feel very clued up on this very scary disease.
It feels good not to be alone, it feels good to know I’m not going crazy..yet! Thank you xx

June 7, 2009 at 1:01 pm
(740) Mark says:

I am 27 years old from South Africa and was diagnosed with papillary carcinoma of the thyroid two years ago. I had a thyroidectomy done, then received external radio therapy and then also received radio active iodine twice.
I was prescribed by both my surgeon and oncologist Eltroxin to prevent the carcinoma from spreading and to control my TSH levels. At first it seemed ok, but six months ago the side effects like everyone else began to start. Blood tests showed that my dosage had to be increased so my surgeon suggested one tablet a day and two every third day, whereas my oncologist suggested two 100mcg Eltroxin tablets a day..
I experienced horrible symptoms such as severe chest pain in the left of my chest, thick saliva/dry mouth, smelly urine, mood swings, dry eyes, feeling of hunger but after eating it didn’t feel as though I had eaten. I knew it was because of this medication so I informed my oncologist about these side effects and printed everyone’s stories and showed him. All he said was “interesting” and looked for an excuse like maybe the dosage was too high or too low.
If this is going on for so long why are some doctors still clueless? It’s been a week off Eltroxin for me now and although I don’t have much energy which is bound to happen, the side effects are very gradually fading away.
Can anyone please tell me how long will it take for the side effects to disappear totally, and this horrible medication to leave my system? I’ll be on the lookout for Armour that’s receiving so much appreciation by Eltroxin sufferers.

June 8, 2009 at 7:42 pm
(741) Dawne says:

Hi Mark. Did you have a partial or total thyroidectomy? If it was a total one I presume you have gone off the medication with the consent of your Doctors and they will be monitoring you. With no thyroid at all you must have a replacement med. They say that the body can store T4 for seven days but I find a day without and I lose a lot of my functions as I have no thyroid. I was told by my surgeon after the op to be sure to go no more than 48 hours without it. We are now lucky to have choices here but my pharmacist orders the brand I’m on in from the UK. You will be tired if having no replacement. I hope it all improves for you very soon.

June 9, 2009 at 5:40 am
(742) Mark says:

Hi Dawne. Its been 13 days off eltroxin for me now and the side effects keep improving. I had a near total thyroidectomy done. I have dealt with the downess and tiredness of taking no hormone replacement before, as I recieved radio active iodine which requires a person to be off hormone tablets for about 6 weeks for it to be effective. I know it’s wrong for a person without much or no thyroid left, to not be on a replacement hormone, but now eltoxin which I was prescribed on seems like taking poison. Perhaps it’s all in the mind for some people thinking they will die if they don’t take any medication. I will be trying armour soon and keep everyone who reads this updated. Thanks for your comment and looking forward to more comments. It’s not good dealing with stuff like this alone and just this website makes a person stronger.

June 9, 2009 at 6:14 pm
(743) Dawne says:

Hi Mark, Do you have a Govt Department where you can lodge an adverse event complaint about your meds? We did that here in NZ and it appears that people in Denmark who are also on the same eltroxin Levo have been lodging their complaints and now have other options for their pills for those affected. My first op left me with a partial thyroid and needed no meds but after growths regrew it was totally removed and the medication was started. Glad you are improving and good luck for your future treatments.

June 11, 2009 at 8:12 am
(744) Mark says:

I have no idea how to go about doing that and at the moment not many people in South Africa are reporting their side effects, as like I said the doctors here are still prescribing patients on this medication,so they listening to their doctor’s advise and the internet is not easily accessible for many people here. I asked my doctor for a script of an alternative which is already In South Africa and which my medical aid can cover, because I’m having a hard time finding armour or nature thyroid here in South Africa. I read about armour thyroid and they say it’s actually from a pig’s thyroid..Is that ok with swine flu going around lol..there is a saying “some things which seem so good are wrong (eltroxin)” in this case some things which are so wrong are actually good (pigs)

June 11, 2009 at 9:02 pm
(745) Dawne says:

Mark, that’s great news you can get an alternative. I expect your Doctor has already warned you but over here we were advised that it can take a few weeks to feel totally right again when changing brands of Levo as there can be a variant in them even though they say the same strength. Also we were told to have another blood test after 6 weeks after the change over in brands. Sorry I’m not able to help with the Armour queries. Once again all the best with your new meds.

June 12, 2009 at 8:37 am
(746) Mark says:

Hi Dawne. Mind If I ask what medication are you using and how much are you taking? Is the issue in New Zealand resolved now because we the only 2 it seems left on this discussion. I wish this was the case in South Africa because we always behind with everything. My doc infact says there isn’t an alternative as they basically similar with different names and only to be used for a short period of time, and he said I should wait a while til my next scan, probably because I’ll be taking radio active iodine again. Why isn’t the best medication in certain areas like here in South Africa (a big country) Is everyone here still using eltroxin or what? Anyone from South Africa that’s using Armour reading this, please advise me how to get it!!

June 12, 2009 at 7:00 pm
(747) Dawne says:

Hi Mark. Yes things have settled here at last. We were lucky the government listened to the many of us who were so ill and finally gave us a choice. It is only the GSK eltroxin we had problems with after they changed the bindings in it. Up till then it was the only one available here too. I am using Almus Actavis from the UK at the moment. Many here now use Forleys Goldshield or Synthroid and find them satisfactory. They are basically the same but our medsafe has advised if you find a brand that suits you to stay with it. It would be good if someone who has had the radioactive treatment as you are could come on here and help you as your situation differs from mine.

June 15, 2009 at 3:32 am
(748) Pauline says:

Hi Dawne & Mark;
I had radio active iodine treatment and was days within not being here any longer. This was back in 1997. It was so bad it zapped my bank card and I had to stay out of the way of people because of the radio activity in my body. Once I started on the “original thyroxine” I was almost back to normal within a fortnight. In fact things were pretty well back to normal until the clowns in this country changed the medication back in Sep/Oct 2007 for everyone without telling them and then trying to fob us off with that GSK Eltroxin crap which apparently was no different to the original. As Dawne pointed out the filler probably was the thing that stuffed so many people up. I am still wondering if the almost total renal failure I had last Sept (08) was caused by the Eltroxin I was given. I now have microscopic polyangitiis (a form of vaculitis) which affects my kidneys. I am convinced the Eltroxin medication was the primary cause of this. Like Dawne I have tried both the Almus Actavis and the Forleys Goldshield (the latter I am currently on and am back to normal as far as my Thyroid is concerned. With the medication you have to try it for a while to see if it’s right for you. One or two pills really ain’t enough.
The thing is about a month ago I had to return to hospital with pnumonia, as I was getting temps in excess of 40 deg!!! I took my medication with me but would you believe it the hospital tried to give me the Eltroxin that stuffed me up!!!!
How’s your blood tests?? (I take you have had some?) To check out how your T3 and T4 is looking. … Look back on this blog there’s some good gen from the guys and gals who have given some very useful threads.. Also have a look through Mary’s other blogs. Thing is Mark, you know your body. Doctors are good at some things but I think a lot of people have found the thyroid still needs a lot of informed stuff (like this blog) to open yer eyes. Good luck!!!

June 15, 2009 at 6:41 pm
(749) Dawne says:

Hi Pauline, Good to hear your throid meds are stable at last. Was curious to know if when you changed from Almus to Forleys whether you had any trouble with apparent overdose or any adjustments to the strength.
Also whether the Forleys gave the same results as the original Goldshield we had last year. I had an extreme reaction to it and by the end of the first week was advised to change from the Goldshield back to Almus as I was so good on that. Have felt better than I have in many years but realize I may have to go onto a subsidized one again at sometime and am naturally very nervous about it. My daughter was diagnosed with grade 3 breast cancer straight after Christmas and is in the middle of chemo at the moment so am loathe to rock the boat with my meds until at least this year is over so I can be there for her. My Doctor still seems cynical about the whole process we’ve been through so would have to do it by myself. Not surprised to hear the hospital still handing out the toxic one. Probably under orders to use it up. The google article from Denmark about the effect on patients was very interesting. Wondered if you’d seen it.

June 17, 2009 at 6:50 am
(750) James says:

Hi all,
Very interesting reading your comments. I’m in England and I’m currently taking 125mg per day. I’ve been on Levothyroxine for 3 years now. My TSH is currently 2.82. I take 100mg of the brand Almus and 25 of the brand Goldshield. Just wondering if anyone gets the problems I do? I tend to get a headache that lasts all day about 30 minutes after taking my medication (before breakfast normally) It’s driving me crazy! Sometimes I stop taking the meds and I feel on top of the world! but I know I can’t do that for ever as I begin to feel awful :-( . Just don’t know what it is or what to do. I think it’s one of 2 things. Either my constant dose is too high or it’s something in the particular brand that doesn’t agree with me. Does anyone else have these problems and any advice? If so does anyone find that taking the medication at night or spliting it thoughout the day helps? Thanks James

June 22, 2009 at 2:50 am
(751) Pauline says:

Hi Dawne and James…
Got me thinking, I’ve now been on the Generic Forleys for a little while and I find my legs are getting a bit wobbly and I can’t walk very far without wanting to sit down.. You’ve got me thinking now as to whether or not this is causing the probs!!!! The Almus I was on was ok and I felt great but now I’ve changed to the stuff in the blue and while box… hmmm! I’m on (effectively) one and a half tablets a day, I in fact take one one day then two next day then one and so on…. This seemed to have controlled my thyroid problems, but am wondering if the Forley Generic is the right one for me. No I did not see the Denmark thing.. Do you have a link??

As far you’re concerned James, I’d try and stick with one medication and not mix it (I think a lot of people here in NZ with the different medications, different strengths will work, but as I said ealier it’s a matter of keeping at it until you realise this is not working for you and change to something else. There are reported to be about 70000 people suffering from thyroid problems in New Zealand. A lot of them just might have been quite happy with the medication they were on. A lot however jumped up and down when they realised the meds had been changed without too much consultation (in fact none) and a lot of people got sick!! Since then, if you read the threads back aways you’ll see that even changing the medications, people were still suffering, until they found the right one for them.. This is what you have to do.. You can’t do it over night.. it takes time for your body to get rid of the “crap” you’ve been taking and adjust to the one your body likes (or can tolerate)… Good luck!

June 22, 2009 at 6:11 am
(752) James says:

Hi Pauline.
Thanks for your comments. Yes, I guess time is the key. Trial and error. Over the last few days I’ve been taking alternate doses. 125 / 100 / 125 and so on. Headache has subsided so perhaps the dose I was on was too high. Just a bit worried I may get tired again but if thats the case I’ll be back up with the specialist to decide if there are any other brands about that I can try. Thanks again.
James

June 22, 2009 at 5:30 pm
(753) Dawne says:

Hi Pauline, Just Google “Denmark;Increase in side effects of Eltroxin” There are now a number of sites about it. Good to see that others are realizing the effects of it too and being listened to.

June 24, 2009 at 12:32 pm
(754) Pauline says:

Thanks Dawne..

Will Give that a go..

June 28, 2009 at 6:19 pm
(755) niamh says:

I had thryoid cancer last year, two op’s and on eltroxin Goldshield brand in Ireland 150mg. Have lots of the symptoms described by others – headaches, tiredness (someimtes waves of extreme tirdeness), dry skin on hands, acne/spots (never had skin problems before taking meds),muscle aches (severe leg pains intially on taking meds), and general lack of energy. Bloods have stablised and my levels are 0.08 which has to be maitained so thyroid cells cannot grow back.
But I have new symptoms tighting around my thyroid area and bad headaches. would like to take a natural formula instead of eltroxin – does anyone in Ireland/UK suggest a natural product that will be okay for the doctor!! I have a great doctor but like all professionals they look at the test results not the whole persons symptoms. I was sick for 8 months before they found the cancer and was tested numerous times for bloods etc so I know that professionals do not always listen to the symptoms and rely on facts/results from tests.
would appreciate any suggestions as I am trying to get pregnant with baby no. 4.

July 7, 2009 at 10:07 am
(756) Mark says:

Hi Dawne and Pauline..I’m still off eltroxin, still working 6 days a week still feeling not 100% but coping.The most tiring thing I’m experiencing is the run around. I’ve been for numerous blood tests recently (thyroglobulin,random glucose, tsh) and a p.e.t. scan. I have radio active iodone in my system currently and I’m due for a iodine scan tomorrow, I dont know what will follow this procedure, my doc will then prescribe a new medication for me so I’ll be keeping you guys informed.

July 8, 2009 at 4:21 am
(757) Pauline says:

Hi Mark… Oh dear,
If you’re anything like me you’ll end up destroying your credit cards or anything with a magnetic strip on it. I also had to stay away from people for a time as well. Had to have my own knives, forks and spoons and plates, and slept on my own (all a bit scarey really. I now effectively have no thyroid..
Oh yeah!! you’ll get the run around as well that appears to be international. I do not know why but it’s almost as if GP (and some specialists) appear to be shooting in the dark when it comes to medication. They just do not want to look outside the box.
Good luck to you and keep us all posted.. Have a read of the threads on this blog as well… You’ll probably learn a bit more!

July 12, 2009 at 9:14 pm
(758) Jilly says:

Hello everyone again

I find it sad that people are still having problems. But am glad that this site is still helping people.

I did change to Whole Thyroid Extract and found it to be very good the first few months. My problem was having to take it twice a day, I often the second dose. Also, after being made redundant and having my income reduced substantially, I could not afford it any more.

So, I have changed to Forley’s Goldshield, and am very surprised and pleased that it is working for me.

One thing I have noticed in the recent messages above, is that the focus is on the thyroid replacement soley. One thing I have found in my reseach is that we are often low in Vit B12 and Vit D. We need to be on the higher end of the “normal scale”

A friend of mine who also suffered badly with the Eltroxin and is now on Whole Thyroid Extract, also had major problems with her feet. Since she has ensured her Vit D levels are high, the problems with her feet have diminished.

SO – that is my suggestion to you – get your levels checked.

It’s a long road to recovery, but one worth travelling.

July 16, 2009 at 1:29 am
(759) Gill says:

Living in New Zealand was self diagnosed 4 years ago. I was put on throxine by the doctor and things started to improve. 18months ago they changed my prescription without my knowledge to eltroxin. Have been very very depressed, seriously aching joints all over, zero sex drive, developed Roseaca 3 months ago around eyes and t zone on face, never had this in my life, no energy for anything, very poor concentration, eyesight getting worse quite quickly, no matter how many massages I have or stretching exercises I did nothing helped it always came back by the end of the day. Heart palpitation occationally. Have been an alternative health practitioner for over 20 years including all forms of body work so have a great knowledge of anatomy and this has horrified me and my partner and family. Have now changed to Levothyroxine(goldseal) which seems to be improving only 6 weeks ago. Back pain easing and general depression lifted but as we know it takes months for systems to readajust sometimes years. Yes I agree that the elthyroxine did mimic ok blood results and yet you still feel like crap. Am also concerned that my dog has now been diagnoised with hypothyrodisum and the only drug that the vets in New zealand are allow to obtain is yes you guessed it ELTyroxine and he cant tell me how he feels but I know it dosen’t work????

August 11, 2009 at 11:19 pm
(760) kevin says:

I am involved in some reseach exploring the ‘social meanings of medication’. I am looking to interview people in the Wellington region of New Zealand who have hypothyroidism as part of this project. Other researchers on the team are interviewing a range of other people with different conditions. Is it possible through this forum to request that anyone who is interested in participating in this research contact me. I can then send an information sheet to people so they can decide if they want to participate.

August 16, 2009 at 4:17 pm
(761) Kevin says:

Just a follow up on my last comment – you can contact me directly at Victoria University of Wellington – Phone 463-5291 or you can have a look on the website for other information – you can find my staff profile at http://www.victoria.ac.nz/sacs/staff/dew.aspx

August 21, 2009 at 7:26 pm
(762) ann says:

Hi, I was very interested to find this site. I was diagnosed with hypothyroid disease a few months ago, after a year of terrible symptoms, extreme fatigue, tiredness, swollen ankles all the time, couldn’t even walk to the local shop for months, doctors didn’t even bother to look at my last blood test results which I found out a year later I had ‘above normal range’ TSH levels, but after all this for over a year I eventually found a new doctor that put me on thyroxin. Have been o.k. for some months until I have, within the last three weeks, been on Forley’s Levothyroxin tablets and I have gone really down hill again with no energy, extreme tiredness and can’t really do much at all. I didn’t realise that different brands had a different reaction until now and reading everyone elses stories. I know my doctor knows about the different strengths in different brands of other drugs that I take and has made sure on my prescription that I always get the same brand that I am o.k. on, so I will have to try another brand other than this Foley Generics one because I feel awful. Has anyone else found this with Foley Generics Levothyroxine tablets 100 mcgs?

August 23, 2009 at 9:03 am
(763) Mel says:

Hi everyone :) I’m 19 years old and was diagnosed with Graves Disease when i was 9. Because of a low WBC count i had to get radio-iodine treatment when i moved to new zealand about 7 years ago. I was put on Eltroxin and it took a while to get the right dose (to be expected) but for a long time, i felt regular with no upsets, didnt even go to the doc for over a year! Around about November last year, the size of my tablets was changed from 50mcg to 100mcg and I can tell you guys this has been the worst year of my life! I didn’t think anything of it, didnt have a clue it could’ve been the pills, but 2 days ago my mother and I were comparing pills and found the problem (she has Hashimotos) Her Pills read Levothyroxine (LEV) while mine still read Levothyroxine (ELT). Hers was changed to the Goldshield brand after she changed doctors and she says she feels amazing. While I don’t remember what having energy feels like :( since last october/november i put on nearly 20kgs, have constant itchy, dry skin that scars with every welt, blurred vision, major anxiety, muscle and joint pain, new allergies popping up every time i wake up to a new day, brain fog, bad memory (i cant stop leaving the oven on after i use it, im going to burn the house down i swear), lowered concentration, FATIGUE not affected my how much sleep i get…the list goes on :( Im changing doctors, going to start taking my mums goldshield to see if it makes a difference. Who do i contact to make a complaint about this, I’ve had enough of feeling like roadkill and i feel like venting my anger (within reason) to somebody responsible. Im young and im so tired of sitting at the sidelines watching my friends live their lives so comfortably and energetically when i would be happy to hide from the world under my duvet covers…

August 23, 2009 at 5:14 pm
(764) Dawne says:

Hi Mel and Ann. Mel you can report to CARM at Otago University any adverse events from medication. The procedure is outlined on their site. Also you could do the same to Medsafe and Pharmac to let them know people are still being badly affected by the Glaxo Levo. Every week week more people are being made aware of why they are so unwell. We also emailed the health minister telling of our reaction to it last year when hoping for a choice of meds. Good on you for wanting to make your bad experience known.
Ann sorry I can’t help with your problem but are you both aware that Synthroid is now also subsidized and a lot are doing very well on it. Good luck to you both.

August 23, 2009 at 8:54 pm
(765) Mel says:

Thanks for that Dawne! I have just submitted a report to them and between that and posting here, i feel a weight has been lifted. It’s so good to read about and talk to some people whos been going through the same thing and knows what they’re on about :) Is there anybody my age out there (NZ) with a thyroid problem? Would be really good to find some peer support :)
Thanks!

September 8, 2009 at 4:40 pm
(766) Ann Roebeck says:

Levothyroxine put out by Forley Generics is the same as Gold Shield. Forley Generics is a company owned by Gold Shield in the UK. When recieving this medication from your Pharmacy, make sure it is dispensed in the foil packets and not singly in bottles. This way you can be sure you are getting the correct Thyroxine.

September 9, 2009 at 10:14 am
(767) mags says:

I have suffered from thyroid problems for a number of years, and last year whilst in the US, I was prescribed Armour. I found this very helpful, it seemed to agree with me, my energy levels improved etc. When my supply of Armour was abount to run out,I visited my consultant here and he was less tahn enthusiastic about Armour. He was of the view it was outdated and oldfashioned, and he pescribed eltroxin 50 mcg(the white tablets). I don’t know why, but I have not been feeling myself and I believe it has something to do with the eltroxin. I have decided in the last month to stay off it altogether. My eyes have suffered, dry, itchy and very irritable(I cant wear eye make up now), and I had to go to the eye and ear hospital. I am going to make enquiries to see if Armour is available here, if not, I will have to try to import it. I have no faith in either my consultant or in the Eltroxin.

September 10, 2009 at 10:38 am
(768) Jorika says:

Dear fellow Thyroid sufferers… :-) I’m 27 year old female from South Africa. I’m so glad that I came accross this website, specially this discussion. I was diagnosed with an over active thyroid when I was 16 years old. I took the radio active tablet and within a week or two my thyroid was dead as a doornail. I started taking eltroxin and since then I have been struggling to keep my weight and emotions under control. I had to do blood tests every 3 months and the dosage was never sufficient, either too much or too little. This frustrated me beyond belief. The last year I’ve been watching my diet to the dot and exercising 5 days a week for a hour a day. But I’ve just been gaining and gaining weight. Any tips on things to do or stuff to avoid? Sometimes I feel like people think I’m using my thyroid condition as an excuse, but really it’s not.

September 11, 2009 at 4:39 pm
(769) Shirl says:

In desperate need of “PROLOID”, thyroid medication !!!

I am writing this letter to provide details of my sister’s health situation. She was diagnosed with thyroid cancer and had her complete thyroid removed in 1989. Since that time she has experienced problems with the thyroid replacement therapies perscribed to her. Eventually she tried a replacement called “Proloid” manufactured by Parke/Davis,PfizerWarner/Lambert. She immediately responded to Proloid and was doing great during the time she was taking this replacement. We did not know, however, that this drug was in the process of being discontinued in it’s manufacture. We have exhausted all avenues to obtain any remaining supply of Proloid that we could in order to maintain her health. Subsequently, she has tried every remaining therapy on the market both synthetic and natural varieties. These include Synthroid, Levothyroxine and Armour to name just a few.

All therapies with the exception of “Proloid” have produced very serious side effects with her. The main active ingredient of Proloid is “Lyophilized Porcine Thyroglobulin”. It is not to be confused with “desiccated or raw natural thyroid compounds”. Apparently the process of lyophilizing the whole thyroid gland seems to be what made “Proloid” different from other therapies. My sisters health has deteriorated very badly as a result of not being able to find a thyroid replacement therapy that her body accepts. We do not feel that she is experiencing an allergic reaction to these other drugs, but for some reason her body is not accepting or absorbing them. These reactions are quite severe and include extreme head pain and pressure, muscle weakness and fatigue, nausea, loss of balance, dizziness, inability to concentrate, hair loss, weight gain etc……. These symptoms are always present whether she is on or off the drugs. However, when she takes a thyroid compound she will experience these symptoms even stronger. She is dying with the drugs……………and she is dying without them.

Thyroid replacement therapies are distinquished into three catagories:

1. Synthetic (eg. Synthroid, Levothyroxin)

2. Desiccated Thyroid ( eg. Armour )

3. Porcine Thyroglobulin (eg. Proloid)

Only Proloid made up the third catagory of therapies available. Now that choice no longer exists as an alternative for patients to try. It is a fact that not all people are able to absorb the same medication in the same way, thus more choices need to be made available to meet the needs of different individuals.

Perhaps the answer to many of the problems relating to thyroid medications would be alleviated by the return of an “old” but reliable therapy called Proloid.

We should be contacting the drug company Parke/Davis and Pfizer and demand a return of the drug “Proloid” to the market.

September 13, 2009 at 9:11 am
(770) Anne says:

From Canada. Diagnosed hypothyroid 20 years ago. Took Synthroid/Levothyroxine in various dosages – from .115 to .88 – never felt normal. 8 or 9 years ago began experiencing a range of debilitating symptoms – diarrhea, dizziness, heart palpitations, muscle tightness/wasting, bone pain, dry ears/eyes, allergies, wrinkling of hands/feet/face, dry skin, anxiety/panic attacks, curling/thick toenails, insomnia, sparse eyelashes/brows, difficulty walking upstairs, etc. Felt like a hypochondriac when trying to explain symptoms to doctors. Tested for so many illnesses – lyme disease, MS, STDs, vitamin deficiency, eye/ear/heart problems, MRI to no avail. Started reading this post and others on Levothyroxine – Convinced doctor to reduce dose several times – symptoms improved but never completely disappeared. Stopped taking medication completely 2 days ago and slept well immediately. Am concerned about stopping abruptly but will have blood tests in a few weeks. The WHO organization should become involved – there are obviously too many people suffering with no awareness or ability to resolve this serious health issue.

September 13, 2009 at 5:44 pm
(771) Ings says:

I have found more and more that we need to be pro-active in all medical treatments. The first step I recommend all thyroid sufferers is to read a book called- Solved: The Riddle of Illness by Stephen E. Langer,M.D. and James F. Scheer. This book has made me informed enough to be able to go to my GP and take initiative in my treatment and if I’m ignored, to find another GP who will listen to me. After all I have to live with my symptoms and I want to be well. Ings

September 17, 2009 at 10:22 am
(772) Jacqui says:

Itchy skin headaches, feeling lightheadedness, nausea just started had many tests with no results thinking it may be the eltroxin because I am not on any other meds. Does any one else feel like me. I cry alot because it is ruining my life the doctors have no answers for me, they look ay me like I’m crazy!

December 11, 2009 at 1:59 pm
(773) Jilly says:

Sorry, I haven’t checked in for a while, life has been a tad hectic.

Mags – In New Zealand you can get the equivalent of Armnour – Whole Thyroid Extract. It is NOT subsidized, however. What many people have found is their body does not convert synthetic T4 into T3. All the synthetics are T4 only, where natural whole thyroid has ALL the T’s.

There is NO WAY WTE (whole thyroid extract) can give you swine ‘flu.

Shirl, if you are in New Zealand, phone Pharmaceutical Compunding in Auckland. They are very helpful. Their WTE is made from a pigs.thyroid.

Anne, it seems to me that few of the medical fraternity take thyroid issues as seriously as they might. It seems to me that the pharmceutical companies enjoy making profit from making pills and potions to treat al our symptoms, rather than treating the cause. It totally amazes me what the thyroid affects, and how different it is from person to person.

Ings – yes, that is a fantastic book. I have monthly meetings of the New Zealand Thyroid Association (Christchurch branch) at my home, and have been lending that book to the members to read.

Jacqui – I hope by now you have read all the posts above and know that there are alternatives. You may well be on the GSK eltroxin which this forum is all about, In New Zealand Goldshield and Synthroid are both funded, and you just need to TELL your doctor to write on the presrition which one you want the chemist to supply. Not all chemists supply both, I was on Goldshield but as I was not 100% great, I changed to Synthroid, and have to get it from anothe chemist.

My levels are not great on Synthroid, TSH too low, T4 too high, T3 about right, so next time I see my Dr, I am going to either go back onto WTE, and find the money somewhere, or lower the T4 synthetic and also take a T3 synthetic.

December 22, 2009 at 2:45 pm
(774) Paul Hammer says:

This forum is really useful and a bit of an eye opener.

I have been on am on 2 tablets of Levothyroxone daily for the last 18 months and my level has finally come into range Free T4 14 and TSH 2.5. It was along process of starting on 1 a day and slowly increasing it to 2 a day

Was not aware of T3 posted in Jilly #764 so need to check this out why I’m not being tested.

I get stiff legs especially in my calfs which I put down to this as it comes after taking my 2 tablets in the morning and wears off in the evening. I occassionally get an almost complete body cramp which maybe just age related.

As my levels are now down, have stated to alternate 1 a day and 2 the next and see what happens on my next 3 month blood test.

December 25, 2009 at 7:19 pm
(775) Paul Hammer says:

Not sure if its in the mind or the change to Goldshield blisterpack 4 days back. Immediate change, no leg ache or anxiety and still taking the prescribed 2 tablets daily and considering taling 1 on alternate days and see how my levels pan out. Also had sudden blurry vision that came on some 6 months ago but still have that

December 27, 2009 at 1:34 am
(776) Jilly says:

Hi Paul

Did the Eltroxin you were come in a bottle that had “Elt” on it? If so, I would say it was the one made by GSK that has been causing all the problems. Extreme tiredness, blurry vision, watery eyes were three of the symptoms I had as well as symptoms of depression. So many Dr’s treated hypothyroid symptoms with Prozac – unbelievable !!! I am glad I found this site so long ago, it has been a life saver !

Regarding your test levels, yes, do get your T3 checked. On the ThyroidNZ.org site there is a list of the various testing ranges in NZ, which will give you an idea of where they see “normal” as. However, also listen to your body, often your normal is not their normal. I function best on a TSH of .1 which is the low end of normal.

Also, I would suggest you get your VitD level checked – should be over 80, and perhaps get VItB, magnesium and zinc – we have found most of us are low in those. An increase is magnesium will help wit the cramps, as will drinking tonic water.

January 7, 2010 at 7:50 pm
(777) Cessbombkeymn says:

Hi All!

I am new to this forum + just thought it would be a good idea to introduce myself and say “HI”.

Bye For Now!!!

Cheryl Schmalz

January 15, 2010 at 3:56 pm
(778) Jilly says:

Hi Cheryl, nice to see a new face. I hope you have found some useful info on this site.

Well, I have finally got a new job, so once I have started, I am going to go back onto WTE again (It is not subsidised here) I think it was best for me, as on Synthroid my T4 levels are where I want them, but my T3 is too low.

I read the article on this site about weight problems, and it seems T3 has a lot to do with that problem, I have never lost the weight I gained on the GSK eltroxin, seems my body is a tad damaged from that poison, in my opinion.

Take care, peoples.

February 5, 2010 at 10:21 pm
(779) Maree says:

Hello
Was on Goldshield for a few months when first diagosed with Hashi’s. Since being on ELT, TSH shot up, so increased dose. Now on 100mcg and feeling very tired, light headed, brain fog, legs get restless at night, concentration gone, forgetful. but TSH is what the GP says is in normal range. I am going to go back to GP and request another prescription and request GoldSheild again. I hav ejust not felt right for a few months and now I know why.

February 5, 2010 at 10:22 pm
(780) Maree says:

Also wanted to say – Go Southland Times! Intereesting how a smaller paper ‘broke’ the story!

February 10, 2010 at 3:46 pm
(781) Caroline says:

Hi there..I thought I would say that some of us on here are also on Facebook..you can join the group at “Thyroid Association of NZ (TANZI)”We have become an incorporated society and would love it if you joined our group to help make changes for thyroid patients and to help prevent what happened here in NZ happening again.
Best wishes
Caroline
http://www.facebook.com/group.php?gid=196992133177

This group has been formed to raise awareness of thyroid disease:-
The Thyroid Association of New Zealand Inc. is a patient-to-patient support group. On 18 September 2009, we became an Incorporated Society..
We are a voluntary organisation, whose founding members were brought together due to suffering adverse side effects of the reformulated GSK Eltroxin in 2007/08. In order to help other thyroidians, we realised there was a need for a more formal style of group and began as the New Zealand Thyroid Association in July 2008. We believe that every person has the right to be healthy and symptom-free, and the right to a treatment plan that works for them – and is affordable.
We aim to:

* Increase awareness of the prevalence of hypothyroidism, and the difficulties facing patients in obtaining a correct diagnosis and appropriate treatment within the NZ Health system
* Provide educational and emotional support to patients and their families.
* Offer information on available treatment options for the general public and the medical profession
* Provide advocacy on behalf of thyroid disorder sufferers (both hypo and hyper) with government and the medical professions
* Help encourage people to actively participate in taking control of their own health
* Pursue the need for open and free access to independent and accurate information both at the time of diagnosis and thereafter
* See more than one (1) alternative synthetic T4 medication subsidised by Pharmac and to eventually obtain funding for Whole Thyroid Extract as well.

February 15, 2010 at 10:44 pm
(782) Alana says:

Hi Everyone,

I am an Australian who was living in Denmark from June 2008 to December 2009 and was switched from my Australian thyroid medication, Eutroxsig, to GSK Eltroxin in July 2009 which I took until December 2009. My TSH levels went from 0.47 to 2.98 in this time which of course was still well within the normal range (which still has a top of 10 where I got them done) However, the sharp increase in the severity of all of my previously existing symptoms and the development of some new symptoms told a completely different story.

My doctor could work out what was wrong with me (not that he tried very hard) – we ran a few tests for hyperparathyroidism and low magnesium (on my request) and for low B-12. Everything came back normal. I then started experiencing EXTREME lower back pain which left me practically sleepless for 5 days and 5 nights. I felt as though I had fractured my tail bone and the doctor ordered an x-ray – everything was clear. It was deemed SEVERE muscule pain from spasms.

Anyway – one day I decided to look up GSK Eltroxin online, after all, it was the only new thing in the equation, and I found this website with all of these comments and I suddenly KNEW what was wrong with me without a doubt in my mind.

When I went to my danish doctor with this information I was told I had no symptoms of an adverse reaction (even though it was quite clear that I did, including allergic symptoms such as swollen lips and a raspy dry cough) and that I was a depressed hypochondriac – he urged me to see a psychiartrist.

My doctor would NOT switch me to the emergency thyroid medication, Euthyrox (made available in Denmark because of the 100′s of adverse reaction reports made against GSK Eltroxin there) which you could only be switched to on COMPASSIONATE grounds at the time.

As a result I returned home to Australia 2 weeks later to get back on Eutroxsig (which I might add has also left me with lingering thyroid and adrenal symptoms for a long time – usually, but not always, at a lesser level of severity).

I also believe my symptoms got worse when I was taking Eutroxsig from the new blister packs that started being dispensed in 2008 (I took 400 of them with me to Denmark and took them all – believe me, I had bad thyroid and adrenal symptoms!). On my return home the Eutroxsig blister packs seem to contain the same pills that I remember were in the bottles in 2006/2007, before the blister packs arrived, but I could swear they were a different shape and texture for a while – I noticed the change when they were still in the bottles actually (I was working as a dispensary assistant at the time) Anyone else noticed that?

Anyways – Thyroid Association of New Zealand facebook group is a great group to join – I know because I am in it.

http://www.facebook.com/group.php?gid=196992133177

And so is ‘Hashimoto’s disease DOWN UNDER’ (an australian group where we talk about all thyroid conditions)

http://www.facebook.com/home.php?#!/group.php?gid=199803937016&ref=ts

I’d be especially interested to hear from other Australians who have had adverse reactions to Oroxine or Eutroxsig in these groups (regardless of whether or not you have normal thyroid function test results).

Thankyou for your article Mary Shoman, finding this article was literally the starting point for me in turning my health and my quality of life around for the better.

Alana Jones

February 19, 2010 at 12:33 am
(783) Kara says:

Hi Alana
My mother-in-law and I both have Hashimotos and have both experienced weight gain with Eutroxsig. My mother-in-law has change back to Oroxine and has dropped the 5 or 6 kilos she put on when taking the alternative “cheaper” drug. I haven’t changed my meds as yet but I will be shortly. The pharmacy assures us that the drugs are no different to each other… how can this be when there is such a change!!!

I have had Hashi’s for 5 years and have recently had to up my doses, my GP can’t help me any longer and has referred me to an Endocrinologist, unfortunately we only have 2 (neither work full time) in Darwin and I have been waiting since January to hear from either one of them, I finally got a response yesterday and got told my appointment has been made for 18 March.

I have joined the NZ group you mentioned and requested to join the Aussie one.

Cheers,

Kara

February 25, 2010 at 12:09 am
(784) jilly says:

Hi Alana and Kara

I’m glad to see you have joined our kiwi Facebook. It’s good to share info “downunder” though this site has been of amazing help to me. We formed TANZI to get support locally and have been in a lot of contact with the Australian groups for information – they have been of great help.

We are so lucky to have the internet and sites like this to let us know that we are not going mad, that there is a problem, and that with persistance and support, it can be fixed – just takes time.

I was nervous at starting work full time, as I was so very tired and ill from the GSK, but am glad to say I am coping wonderfully.

March 2, 2010 at 10:19 am
(785) Sudeepti Rohit Chandra says:

hi..
am 26 and i was diagnosed with hypo hypothyroidism in 2006…
it was 186.75 at that time….
now am taking 300mg of eltroxine everyday….
i suffer from severe hair loss, mood swings, frequent nightmares, heart palpations, depression etc etc the list goes on and on…

but yeah i did lost very much weight in the past 3 yrs…
feel much less tired, my skin is better now but my eyesight is going poor…

but my Doctor says no eltroxine means no life for me so i am taking it with happily accepting all the side effects as no options are left for me as my TSH has come down to 70 only and range is 0.5-5.5….

March 4, 2010 at 4:58 pm
(786) Ange says:

Have been on the LT ‘trip’. Been on Synthroid for the last year… just wondering if anybody is feeling not so good on the synthroid of late?

March 7, 2010 at 8:13 am
(787) Chris says:

Read up all you can on website of Dr John Lowe…he has a lot of information on proper treatments…also many people suffering from thyroid problems ALSO have vitamin b12 deficiency (even when “normal” is the term used by doctors regarding pathology tests). Very hard to find a good doctor that will listen to thyroid and vitamin problems…have had many worries over many years and the only way to help myself was through the internet…keep looking things up and reading all you can…you will end up on the right track…don’t give up!!!!! Also “Normal” levels for some are definitely NOT “Normal” for others. Go by how you feel One quote that I read was true….TREAT THE PATIENT…NOT THE NUMBERS!!!!

March 30, 2010 at 5:34 am
(788) David says:

Just wondering how I can get access to Arnour Thyroid Tablets in Australia. I have to travel to the States in June so I could try then, but obviously easier if I can do by post

March 31, 2010 at 10:45 am
(789) zaara says:

what if someone takes eltroxin even if not suffering from hypothyroidism ?suppose it does not have any effects does it hinder the working of thyroid hormone when intake is stopped

April 5, 2010 at 2:11 pm
(790) Debbie says:

Hi, I have been on 50mcg Levothyroxine since early 2002, with no problems at all, until the last 12-18 months ish where I am experiencing extreme tiredness, especially lately. I was diagnosed 12 months ago with pernicious anemia and am having VitB12 injections every 12 weeks, last one 1 week ago. I have been shocked at what I have read about peoples symptoms on changes in tablets. I do recall some time ago that the packet changed, I’m sure Eltroxin rings a bell previously, but when asking in the pharmacy I was told its just a different brand but exactly the same. Every blood test I’ve had, more than the normal 12 regaular one, because of tiredness, levels have come back as normal, so sent away with nothing wrong. I have til now been completely unaware that there were different ‘types’ of treatment, and think it is time to pay a visit back to the docs. I am now convinced that the change in batch has caused this.

April 7, 2010 at 5:50 pm
(791) Fadia says:

Hi, I am Fadia from Kuwait. I was on Eltroxin which contains thyroxine for the past 6 years with no problem, I could not tolerate other drugs that contain levothyroxine. Only 2 weeks ago I got my supply of Eltroxine from the hospital and I found that it contains levothyroxine, not thyroxine like it was before. I was looking at this site and I saw the comments about side effects of Eltroxine due to a change in the formulation by the manufacture. Now I know the reason for my recent sufferings, I feel dizzy and I have short breath and upset stomach for up to 6 hours after taking the medication. I dont know if I can get thyroxine in an alternative medication, can some one suggest?

April 12, 2010 at 11:25 pm
(792) Swanny says:

Hi I’m also a Hashimoto Disease sufferer and after having taken the radioactive Iodine, I now suffer from underactive thyroid. Since my doctor (in Bangkok) has prescribed Euthyrox (Levpthyroxine Sodium) which was manufactured in Germany by Merck, I have felt really well…

My last appointment with the doctor two weeks ago, he has changed my medication to Eltroxin. After one week I started to feel bloated and swollen up again!

After having read your comments, I believe at last I have found the problem. I will go back to my doctor asap and ask him to change back to the Merck Euthyrox which has worked before.

April 23, 2010 at 9:53 am
(793) Jaye says:

At the end of the day the Pharmaceutical Companies and the Governments are the only ones winning here.

The Pharmaceuticals provide the medicines that don’t quite help make consumers better, so then we have to buy more medicines for our ailments. Meanwhile our symptoms are getting worse and low and behold the Pharma. and Governments are lining their pockets – with OUR money, buying THEIR medicines that are making us more SICK.

Its a cycle…as long as we have to rely on these companies and Governments to provide our medications and rulings – our health is in their hands!

Why do you think the Government is making it harder for consumers to buy NATURAL products. Google NATURAL and ALTERNATIVE medicines and you will be shocked to see that in some countries Governments are making it very difficult for consumers to purchase NATURAL products.

They would prefer that we BUY their poison that is going to keep us reliant, dependant and out of pocket.

My encouragement to the FREE World is GO NATURAL and ingest what GOD created!

These medicines are designed to make us sicker – so that we will continue to rely on them – hence giving these BIG corporations $$$$. Governments stand to profit millions of $$ from these Pharmaceutical companies.

That’s what is all about at the end of the day.

If you don’t believe me – research what the biggest killer is to mankind..it’s not heart disease, diabetes, not even AIDS…Its death through Prescribed Medications.

Do your due diligence and you will be shocked!

I have diabetes and kidney disease in my family and I am determined to beat it with natural whole foods, fruit and vegetables..I try and live by the rule that “if God didnt make it – don’t eat it!”

April 26, 2010 at 3:50 am
(794) Jilly says:

Yes, Ange, I’ve been on Synthroid for a while now, and at first it was fine. I’ve been blaming my tiredness and fatique on working full time in an office, which I have not done for 4 years. I thought it was all the learning and newness of the situation tiring me out.

I regularly get VitB shots (not pills, as at my age, shots work better) as well as a Vit D pill once a month. I’ve just had my tests and find my T4 is very high, yet I do not have hyper symptoms. SO something is indeed very strange.

I am going back to the Dr tomorro to talk about my latest tests and see what her opinion is. Maybe I should go back onto Goldshield, I just wish I could afford Whole Thyroid Extract – it was the best for me since I was poisoned by the Eltroxin.

I agree natural would be better, however what natural ways (without prescription) can you treat hypothyroidism when it is hereditary?

June 12, 2010 at 11:24 am
(795) Michael says:

So what are we going to do with this Eltroxin? are we taking the right medicine or are we starting to kill our selves with the wrong one? I read all the victims comment, and all the story that they told is the same, me my self is also suffering from hypothyroidism and using Eltroxin, and off course I also want the right answer coming from our specialist, In behalf of all the people who have thyroid problem, we deserved the right ANSWER!

July 3, 2010 at 5:25 pm
(796) Dawne says:

Hi all New Zealanders. There is a petition running on the Trade Me Messages site to try and have the old eltroxin from Canada subsidized again in N.Z. This is also intended to try and help and inform those who are unaware of the effect the replacement and altered GSK Levo has on many and bring it to the attention of those with family in rest homes and hospitals who still only are supplied with the levothyroxine that causes so many health problems. The petition is running until the end of July.

July 3, 2010 at 5:27 pm
(797) Dawne says:
July 6, 2010 at 8:21 pm
(798) Barb says:

Hi everyone.
It breaks my heart to read all these stories about these horrible drugs we are being forced to endure.

My story: I was diagnosed with a thyroid problem in 2003 Dr told me I would have to take a pill every day for the rest of my life!! Bugger…I had always been so healthy, was a bitter pill to swallow being told I had to take a pill every day from then on.
Every thing was fine for the first 4yrs….UNTIL THEY CHANGED THE MEDS!!
Well the new meds were a problem right from the start. I finished work to have a break,(quite honestly didn’t have the energy to get out of bed!) and try to get my strength back. Its been nearly 3yrs since all this started and I’v had ENOUGH of feeling sick, fuzzy headed, sore eyes, always dam cold, no energy!
I was first put on GSK which didn’t suit me. Then went onto Goldsheild, thought it was going to be the ‘Silver Bullet! alas it wasn’t to be. Simalar problems to GSK.

Oh lordy where will it all end? Do people have to die on these horrible drugs before Pharmac or the Gov will do anything? There is a petition going that all thyroid patients need to sign. Please everyone take the time to sign it, and pass it around to family and friends.
love to all
Barb

July 6, 2010 at 8:42 pm
(799) Dawne says:

Hi Barb, Have you tried Synthroid? A lot are doing well on that.

July 6, 2010 at 9:12 pm
(800) Barb says:

Hi everyone.
It breaks my heart to read all these stories about these horrible drugs we are being forced to endure.

My story: I was diagnosed with a thyroid problem in 2003 Dr told me I would have to take a pill every day for the rest of my life!! Bugger…I had always been so healthy, was a bitter pill to swallow being told I had to take a pill every day from then on. Every thing was fine for the first 4yrs….UNTIL THEY CHANGED THE MEDS!!
Well the new meds were a problem right from the start. I finished work to have a break,(quite honestly didn’t have the energy to get out of bed!) and try to get my strength back. Its been nearly 3yrs since all this started and I’v had ENOUGH of feeling sick, fuzzy headed, sore eyes, always dam cold.
Oh lordy where will it all end? Do people have to die on these horrible drugs before Pharmac or the Gov will do anything? There is a petition going that all thyroid patients need to sign. Please everyone take the time to sign it, and pass it around to family and friends.
Love to all
Barb

July 6, 2010 at 9:20 pm
(801) Barb says:

Hi Dawne
Thank you.
That was quick:)

No I haven’t tried Synthroid, only GSK, and the Goldsheild. will talk to the Dr on friday about Synthroid and Armour. I just so want my old self back:(

July 6, 2010 at 9:31 pm
(802) Barb says:

ummmm don’t know how I managed to double post!

Hi Dawne

Thank you for your reply. No I haven’t tried Synthroid., only GSK and Goldsheild. Going to Dr on friday to get things changed. Will certainly ask about Synthroid, also want to find out a bit about Armour.

July 25, 2010 at 5:15 pm
(803) Ange says:

Thanks Jilly. Haven’t checked in for a while. Strange my TSH was low indicating hyper also… The mystery continues…

July 31, 2010 at 7:20 am
(804) Bhisham Maharaj says:

I live in Trinidad & Tobago, i have been taking eltroxin for the past four years,i sometimes get irregular heartbeats and just recently have been experiencing bouts of tachycardia or very fast heartbeats that will sbside with rest. The tablet is only available in 100 mcg. and i am not sure if that dosage is causing these problems.

August 11, 2010 at 3:52 pm
(805) Roma says:

I am on eltroxin wight now. 200 mg.
I feel so lethargic and week all the time. I decided to google side effects of Eltroxin and stumbled upon this web page.
I hate my life the way it is not. I am so tired all the time, can’t even vacuum my house. My joints ache and I have headache every day. I just lay in bed all day long, get up to eat and back to bad. I sleep most of the time and can’t get enough of it. I forget things and don’t care about anything.
I am 44. I was a woman who used to go to work and after work was able to clean the house, do the laundry, make dinner and watch TV till 11 pm.

August 11, 2010 at 6:42 pm
(806) Dawne says:

HI Roma, which country are you from and do you have a choice of thyroid replacement medication? It sounds mighty like the symptoms people feel while on the GSK white tablets. The original ones were yellow.

August 15, 2010 at 12:36 am
(807) andy says:

please help, been on Oroxine for 18 years in AUS, the last 5 years very very bad, is there any thyroxine not made by GSK which I can import? Thanks.

August 15, 2010 at 2:01 am
(808) Dawne says:

Hi Andy, The original GSK eltroxin is currently being imported privately here in NZ from Canada where it is made. That was the one we were all on before Pharmac replaced it with the GSK levothyroxine that is made in Germany and caused so many bad side effects. You should be able to get the info off the net where to order from. Make sure it’s the Canadian one.

October 16, 2010 at 6:40 pm
(809) BRIAN says:

HAD THYROIDECTOMY 6WKS AGO, FELT GREAT UNTIL LAST WEEK, NOW HAVE STRANGE VISION, DEEP SPASMODIC MUSCULAR PAIN, HEAD ACHES , PAIN IN BOTH LEGS, BACK PAIN AND COMPLETLY STUFFED , IN BED BY 9-930PM

October 21, 2010 at 5:12 pm
(810) Camy says:

Even though I have been on medication for about 10 years for my under active thyroid….I did not pay much attention to the different brands………..It is only last month when I had my refill and started on it the same day I started my strict diet and exercise regime…………I noticed I was just putting on weight…..after 2 weeks of frustration and 2 kgs + …I just went and had a look at my new fill……which is called Eltroxin….had a few Levothyroxin left from my last prescription….and with the same diet and exercise regime…after a couple of days I lost that +2 ………………….Whenever the brands have been changed in the past and I have put on and off…………..I did not bother to check…….but now I am convinced

December 3, 2010 at 1:08 pm
(811) joanleah says:

Hi, i’m also taking eltroxin for a month now and i’m wondering why i am having a severe hair loss,irregular heart beat,muscle cramps and fatigue. It all started just recently and now i know why… But what bothers me a lot is the thinning of my hair, can someone tell me if it will go back to normal if i take the right meds? I still want to find a job, the thought of losing my hair scares me…Please share some light…Thanks.

December 4, 2010 at 4:19 am
(812) kate says:

hi i have just been told i have hypo thyroid , and was given a bottle of these pills , glad i have found this site , my condition is my auto immune is attacting my thryriod ,which basically means my white blood cells my fighters are thinking my thyroid is a bad guy and beating him up ,so i figure why not fix my immune system you dummies !!! doctors say cant be done go figure no momey in that is there. so after a lot of research i have come across a natural product called platts biospectrum . this is totally natural product and it works on the immune system .the human body is made up of 26 natural minerals and we are most of the time diffecent in 12-15 depending on our diets . look it up im going the natural way to see if i can fix my immune system afterall that s the problem not my thryroid!!! i let u know how it goes and i am praying god does a miricle afterall he made us good luck everyone ,i sincerly mean that, medical doctors have alot to answer for .

December 11, 2010 at 8:07 pm
(813) Dawne says:

Hi Joanlea., I’m not sure if you are from NZ. There is a lot of information on the thyroid support site.
http://www.thyroidsupportnz.co.nz/contact.html
You certainly seem by your symptoms to be hypothyroid and with the right meds for you yes your hair will grow back once you get your levels right.
Also if you go to the following site and go to the last page and post your question someone knowledgable will come on and help you.
http://www.trademe.co.nz/Community/MessageBoard/Messages.aspx?id=133013&p=251&topic=0

December 11, 2010 at 8:24 pm
(814) Dawne says:

Hi joanlea, You certainly sound like your symptoms are hypothyroid. Yes your hair will regrow once your meds are stable on the right dose for you. YOu don’t say if you are in NZ where we have trouble with the levothyroxine that we were on. The following site would be of help for you. Go the the last page and post your question and someone will be able to advise you.
http://www.trademe.co.nz/Community/MessageBoard/Messages.aspx?id=133013&p=243
Also the support group have a lot of information.
http://www.thyroidsupportnz.co.nz/thyroid_drugs.html
Good luck

January 17, 2011 at 10:21 pm
(815) Jan says:

Hi,

Has anyone else noticed that they are having to take more Eltroxin than they did before?
A couple of years ago I was taking 2 pills 2 days a week and then 3 the other days. Last year my TSH went up to over 5 when I had usually been about 1.5 so my GP increased the dose. I am now taking 4 pills 2 days a week and 3 on the other days. The TSH came down to about 2 which is OK but a blood test before Christmas was back up tp 4.9! So do I now take even more?
I am interested about all the side effects that people seem to have on Eltroxin. I too have blurred vision lots of bloating and of course some weight gain. I have a sore stomach most of the time but my GP does not believe the Eltoxin is causing all of this. I know it is!
How do I convince my GP to let me try WTE?
Jan

January 28, 2011 at 4:47 am
(816) William Bowles says:

I have had the same problems using Eltroxin (for two years I’ve been on Levothyroxine 75mg per day), weird muscle pains in my hands and arms.

I have no idea why my doc switched the prescription (maybe he doesn’t even know?)

Bill

June 21, 2011 at 4:02 pm
(817) Jilly says:

Sometimes it is not the Dr that changes your brand, it is the chemist. Next time, take your bottle to the Dr, ask if it is GSK, and if it is, ask to try either Synthroid or Goldshield. Both are subsised and approved. Your Dr needs to state the brand on the script.

March 31, 2011 at 3:00 am
(818) mohana says:

please give information about for avoid daily take tablet to thyroid… i cant eat daily it causes side effect like, headace, giddiness, fatigue,, doctor told that i should take tablet untill die… please give any alternate sugestion for avoid tablet and to overcome from thyroid

thanking you

June 15, 2011 at 9:54 pm
(819) JT says:

JT(813)
I have had an allergic reaction to Oroxine but it is not to the drug itself but the Maize (corn)starch. This starch is VERY high in sulphites and causes allergies and reactions in many people, not to mention it is a trigger for asthma.
I have gone to a compounding chemist (pharmacist) and had it made up with wheat starch instead.
I had severe swelling around my eyes and used to wake up in the morning with my whole face swollen.
The drug companies have a lot ot answer for.
Hope this helps.
(Australia)

May 28, 2011 at 4:01 am
(820) Ellyn says:

Joanleah – re your hair loss. You have my sympathy and empathy as I started losing my hair at age 12. Hopefully your hair will grow back once the original trauma has passed – why don’t you go to one of the hair replacement clinics and talk to them pronto – I believe Advanced Hair Clinic is very good but have yet to try any of them. From what I understand laser treatment can work a treat if treatment is started within a year of original hair loss. Health benefits in NZ pay around $2000 every 9 years for wigs/hairpieces for hair loss from medical problems including cancer treaments and any other medical causes – not a huge amount of money but very helpful when you first have to shell out for an unexpected expense like a wig. Don’t let the hair loss get to you though just know that there are thousands of us women out there already wearing wigs and hairpieces and have laser treatment and hair transplants etc. It is far more common than we think – it seem so natural to think we are the first and only person to suffer from anything. I’ve tried so hard to analyse over the last few years just what it is that makes me feel embarrased over my hair loss (and believe me, over the years I have lost a massive amount and mine is of the scarring variety so the hair won’t regrow) but I do still feel embarrased, plus a huge sense of loss and grief but in the end I am still me, with a husband who loves me and I put that wig on in the morning (latterly the hair piece) and I feel beautiful again – all this after 49 years of hair loss. I now sometimes tell people I wear a wig because it’s easier than having to tell lies when they say how lovely my hair looks and ask what hairdresser I go to!

June 15, 2011 at 11:52 am
(821) JT says:

I have had an allergic reaction to Oroxine but it is not to the drug itself but the Maize (corn)starch. This starch is VERY high in sulphites and causes allergies and reactions in many people, not to mention it is a trigger for asthma.
I have gone to a compounding chemist (pharmacist) and had it made up with wheat starch instead.
I had severe swelling around my eyes and used to wake up in the morning with my whole face swollen.
The drug companies have a lot ot answer for.
Hope this helps.
(Australia)

June 30, 2011 at 11:38 am
(822) Helen says:

I was put on Eltroxin at the end of May.
Four weeks later in have dry, filmy , itchy eyes…and a numbing pain going down my left arm.
Called my GP who said go to emergency right away.
SIX hours of tests and x-rays later I got a clean bill of health.
Doctor in emerg. suggested it might be the pill…and to talk to my GP.
The ONLY different thing in my life was taking Eltroxin.
This morning, June 29, 2011, I did NOT take it.
So far no filmy eyes…still a little sore in my arm…maybe this pill has caused some nerve damage?
Called my doctor to change to Armour Thyroid, since I live in Canada, Health Canada has approved this pill.
I will try it and if doesn’t work, on to the next one.

August 7, 2011 at 12:33 pm
(823) Prem says:

I live in Canada and have been taking Eltroxin 50 mcg for several years. For the last several months I have been excessively sweating and my left eye has started drooping and getting worse.I have focusing problems.
I saw my cardiologist a couple of days ago and was told my symptoms were due to my thyroid. So I got on the web to find out what is known about it and discovered this site. I have developed most of the symptoms reported here.
I will see my family doctor next week and discuss change in medication.

October 17, 2011 at 9:13 am
(824) Miron says:

This happened in Israel too. Now we are getting the new formula and people are complaining.

October 17, 2011 at 9:15 pm
(825) LeahGG says:

Israel has started a class-action lawsuit

November 3, 2011 at 4:06 pm
(826) Bodil says:

My daughter and I have just discovered why we have not been well the last year or so. After starting Levothyroin + Armour thyroid about 6 years ago, our lives have changed for the better. We felt really well. A year or so we bought Elthroxin from inhousepharmacy.com. These were my symptoms; Sleep, energy, muscle pain, headaches/migraine. I assume inhousepharmacy.com got a cheap load and did not worry about people feeling ill on it. Money was being made!

December 31, 2011 at 4:51 pm
(827) carls says:

im living in ireland and i suffered with a burst cyst on my kidney 18 months ago since then i have become hypo and take eltroxin 100mg daily and feel worse for doing it. always tired, have terrible leg cramps and spasms oh and my arms never seem to work at night i can barely manage to hold a cup!!! ive gone from someone who could really eat my weight in food and not gain a pound over 7 and a half stone to just over ten stone in a year. dr told me this happens wen ur not a teenager anymore and laughed which wasnt exactly the help i wanted or was paying for. mad thing is i didnt take my prescription for a month and didnt have these problems. normally my dr is quite understanding but lately i think she thinks im a bit of a hypercondriac and should get over it!!!! just wondering if anyone else in ireland is suffering like i am, its becoming such a struggle to get up in the mornings that its almost unbearable at this stage.

January 20, 2012 at 6:38 am
(828) Durlstonage says:

Since I’ve been taking Eltroxin by Goldshield the symptoms have been extreme thirst, dry skin, terrible headaches,
Neurological disorders, transient visual obscuration

January 22, 2012 at 5:18 pm
(829) Mark Jones says:

I was takin the levothyroxine and had head fuzzness, heart palputaions. lack of concentration. was told by several doctors and 3 endocrine specialists and 4 pharmasists its not the medicaine.. eventually one specialits after reading what I printed off the internet changed my medication.. I have been fine ever since.. I now ise Eltroxin a GOLDSHIELD brand

February 13, 2012 at 3:45 am
(830) Picky100 says:

I have been on daily thyroid medication since October 2010 when my TSH was found to be 100. Initially I felt great but now I have a strange set of symptoms which make me wonder whether they are thyroid related. I see from my pill bottle that back in early 2011 I was on eltroxin now I’m on levothyroxine – what is the difference?
I

March 11, 2012 at 5:43 pm
(831) Corali Bolwell says:

Hi everyone, I am horrified at what i have been reading today on everyone’s symptoms and problems on thryoid medications! I had my thryoid removed in 1994 because of a malignant tumour on it, and have been on Eltroxin from South Africa ever since, 150mcg!
I now live in the UK and I had run out of eltroxin so my doc has just prescribed Levothyroxin, made by Actavis. I have only been on this for 3 days, and having never really worried about my medication, assuming that the Doc knew what he was prescribing, I am a bit weary about taking a different drug. Well, low and behold I find all this tonight!!!
I have had various sympotms for many years, main ones being: sore, dry eyes,( optician saus I don’t make enough tears???) ; other one is achey lower back pain( I am a sports therapist and thought maybe it was work realted?) ; and for years on end I have had stomach aches early mornings!!! I am not sure if these things are related to the thyroid medication, but could they be? who can I go to?
My doc has just sent me for blood tests, I am awaiting results.

I am really concerned about this, as I have no thyroid myself, so I have no choice but to take synthetic thyroid medication. Can the natural thyroid medication do the same thing as Eltroxin? Anyone in London know of anyone particulalrly good in thryroid medicine that i can go and talk to ?

corali

March 23, 2012 at 2:46 pm
(832) Ann says:

I was prescribed Orixine and given Eltroxin. Now I am getting symptoms of heart pain, blurry eyes and generally
not feeling well. This is in Australia.

March 26, 2012 at 6:13 am
(833) patricia says:

I found this site two weeks ago. Many many thanks Pauline for the DON’T MIX MEDICATION suggestion, it works!!!
I was diagnosed 59.8 with my thyroid levels. In agony with Eltroxin. Five brands later I found ALMUS thanks to BOOTS CHEMIST UK. felt an instant improvement with my pain but I was mixing and couldn’t get above 50mcg.
Thanks to Pauline and this site took ALMUS only. Now up to 75 mcg I feel normal, very little pain, a bit tired. Heading for 100mcg. I take 25mcg at night and 50mcg at day. It is better for me this way.

Angela I get my ALMUS from BOOTS CHEMIST UK.
Manufacturers: PL Hoder, Actavis, Barnstable. EX32 8NS UK

April 19, 2012 at 5:29 am
(834) Rihanle says:

Hi all! I can highly recommend the book “Hypothyroidism Type 2 – The Epidemic” by Dr Mark Starr. A lot of lights will go on around symptoms you’re experiencing, as well as what meds he prescribes and the results he’s getting. He also reported on years and years of research by himself and other doctors interested in curing hypothyroidism. Unfortunately what he recommends is not available in all countries, but I believe if it isn’t available, you might be able to purchase it via the Internet. I believe Amazon.com is the way to go. Thanks, by the way, for the info I got here, I never knew my eye problems were related to Eltroxin!

April 23, 2012 at 1:40 pm
(835) fried_candy says:

I came here exploring the link between levothyroxine and rosacea, and what can I say I AM SHOCKED.

I live in the UK. 10 years ago at age 18 I was very ill and my throid failed, so ever since I’ve been on thyroid replacement. Never had any adverse reactions until last year when suddenly I developed a number of awful symptoms within several months. First the ‘german measles’ (see post #21 by daleway) which the derm mistook for seborrheic dermatitis, which went away within a fortnight. Then, over the next few months I developed profuse sweating, a form of asthma, hair loss, cystic acne, general acne, migranes, flank pain, back pain, menstrual irregularities, heart irregularities, reynauds syndrome, dry eyes, extremely sensitive skin and rosacea (severe flushing, permanent erythema, papules and pustules, facial swelling).

I’ve seen numerous doctors innumerable times this last year, and never once did any of them suggest any of these may be linked (no; some of them just told me I may have hypochondria, munchausen’s or an attention seeking personality disorder (what!!!) and need to see a psychiatrist).

Over the last half year I’ve adopted a myriad of approaches to cure my ailments. First, I eliminated gluten, alcohol and soy from my diet (unfortunately levothyroxine and painkillers are coated in lactose, and I take a lot of painkillers as I’m in constant pain). Then, I added a vast array of supplements (fish oils, 30mg zinc picolinate, probiotics, prebiotics, l-lysine, TMG, vit c ester, b vitamins, among many others). Changing my facewash, moisturiser, toothpaste, shampoo etc to gentler products I make myself. Even went on antibiotics for acne and h-pylori. HOWEVER, none of them made a blind bit of difference.

Until now, I never knew levothyroxine had undergone reformulating, however it makes sense because the packaging of the box did indeed change sometime ago (although I don’t recall whether this was last year prior to my symptoms beginning or before that). I am praying that I’ve found the culprit of my problems, because that gives me hope they’ll go away, but as I need some form of thyroid replacement I’m now wondering what I’m going to do about that as the doctors I’ve seen aren’t particularly amenable to suggestions where medication is concerned. I doubt I could afford to buy non rx thyroid supplements.

I urge anyone who has experienced the same things to email me and let me know, as I would like to take this information to my GP. They won’t believe my word alone, but if others are experiencing the same or similar things they may take me more seriously.

April 23, 2012 at 1:45 pm
(836) fried_candy says:

I live in the UK. I’ve been on thyroid replacement for 10 years. Never had any adverse reactions until last year when suddenly I developed a number of awful symptoms within several months. First the ‘german measles’ (see post #21 by daleway) which the derm mistook for seborrheic dermatitis, which went away within a fortnight. Then, over the next few months, many others. These include acne, extremely sensitive skin and rosacea (severe flushing, permanent erythema, papules and pustules, facial swelling).

I’ve seen numerous doctors innumerable times this last year, and never once did any of them suggest any of these may be linked.

Over the last half year I’ve adopted a myriad of approaches to cure my ailments. Eliminating gluten, alcohol and soy from my diet (unfortunately levothyroxine and painkillers are coated in lactose). Adding a vast array of supplements. Changing my facewash, moisturiser, toothpaste, shampoo etc to gentler products I make myself. Antibiotics for acne and h-pylori. HOWEVER, none of them made any difference.

Until now, I never knew levothyroxine had undergone reformulating, however it makes sense because the packaging of the box did indeed change sometime ago (although I don’t recall whether this was last year prior to my symptoms beginning or before that).

I pray that I’ve found the culprit of my problems, because that gives me hope they’ll go away, but as I need some form of thyroid replacement I’m now wondering what I’m going to do about that as the doctors I’ve seen aren’t particularly amenable to suggestions where medication is concerned. I doubt I could afford to buy non rx thyroid supplements.

I urge anyone who has experienced the same things to email me – trebolsiete@live.com – and let me know, as I would like to take this information to my GP.

May 9, 2012 at 11:56 pm
(837) kaw147 says:

I have just started Oroxine for block and replace treatment of my graves disease. Have bad headache and feel quite distracted and vision is playing up. Could be a number of things I’m sure but am wondering.Can we get natural thyroid hormone in australia?

June 1, 2012 at 1:03 am
(838) Shauna says:

Australia here.
OMG! Mini story of my journey… just in the past week.
Doing some research & I am gobsmacked by what I read.

Last friday I ran out of my eutroxsig…oh well I’ll get it tomorrow… brain fog is an issue & I forget things often. Monday came & I was actually feeling the best I have in years. My brain was working… along with many other things… general mood improved (tolerance), eyes, random pain, headaches gone (no panadol over weekend), sinus’s clearing, ears not exploding, neck pain gone, sensitivity to skin gone. May have missed a few things, but, I guess you have the idea. The only thing changed was NOT having my eutroxsig. Well, this blew me away, should I still get that script?.. a dilemna. I like that my brain is working better than it has in years… the questions running through my brain.. has my thyroid grown back was my first thought… Iodine radiation in 2004…
I left it till thursday to see my dr.. whom is very challenged by me.. but is stuck with me. We chatted about the possibility that thyroid had grown back.. OR whether it is the medication. From what I read I’m guessing it was wishful thinking on my part that it was a regrowth :(
One thing I will say.. it is so very difficult for someone having bad reactions to medications to actually recognise & control the outcome when it is effecting their thinking. If I had not forgotten to fill my script I would still be in “brain fog” & not really be in control.
Arghhhhhhhh.. so many things wrong with pharmacutical & chemical companies it beggers belief.
Thank you for this section of chat back & wishing ev1 well on their journey.
PS I will be looking for natural solution.

June 2, 2012 at 9:47 am
(839) Talma says:

Can I switch my medication from Eltroxin 50mg to Euthyrox 50mg?

June 4, 2012 at 2:01 am
(840) Jilly says:

To Shauna…. what you describe is how I was, back in 2009, when I stopped taking the “new and improved” GSK Eltroxin (strongly against alll medical advice) but I had had enough, I KNEW it was the cause of all my problems – and they listed like a medical journal, just like yours do. The day after I took my last one – wow, what a difference.
Since then, I tried other synthetics, but I believe damage has been done, and I now do not get what i need from synthetics. When ever I am on Synthetic T4, my rosacea flares (something I never had prior to the change in GSK eltroxin) I’m best on Whole Thyroid extract, which has T1, T2, T3 and T4 as well as other things like calciton.

June 5, 2012 at 7:51 pm
(841) Shauna says:

Jilly… Thanks for your reply. I am all but at my wits end. Since not taking the med my kids say I am a much more pleasant person to be around. I personally feel much more relaxed. Support is not too forthcoming – my dr is challenged in this area – there seems little if any info given to dr’s. I need to find an alternative… just finding that my trust factor has plummetted… I am concerned about ‘losing’my brain again. My body has issues with preservatives & many chemicals… finding something that will not change & thow me off kilter… let alone ev1 in contact with me. There is a glimmer of hope that my thyroid has regrown.. though realisticly I need to be ready with something else. I have info to pass to my dr regarding other meds. I am on a timeline if I need to go back on meds – information overload lol Just hope that my dr keeps listening. Take care. Thanks to ev1 here

June 7, 2012 at 10:13 am
(842) eithnegurhy says:

Hi I have just had my bloods checked and my TSH is elevated I have
absolutely no symptoms but my Doctor has told me that within 2 years I will suffer from dry skin, constipation, tiredness, weight gain, you name it I am goin 2 get it I am absolutely frightened out of my mind. I am extremely healthy, very fit and eat really healthy can anyone tell me is this all true, I am due to have my bloods repeated in 4 months time, I am on
no medications whatsoever, please can someone elighten me I am just dreading the next 2 years.

June 8, 2012 at 8:16 am
(843) Mereana Kingi says:

Hi eneone out there, I have been on Eltroxin 50 mcg(lev) for approximately 2 years and all its done is given me a headahe,swollen ankles that look like cankles,watery eyes, make me tired,gained weight,…after they told me it wud help me to lose weight…sore muscles and shoulders, a stiff neck and back, and it also makes me really really tired…even thou I have talked to my doctor about all those symptoms to me he is not very helpful all he does is give me a higher or lower dose what can I do …I see some of you have changed to a medication called Diotroxin and yous have found that it is better then eltroxinShud I do that tooo….I dont like my doctor b cos I dont think they care

June 13, 2012 at 8:33 am
(844) Daniel says:

Hi Everyone

Sorry to hear all about the bad experiences you have been through!

I have just received back some blood results and it indicated i have an underactive Thyroid, I am concerned because i went to the doctor regarding poor digestion and loose stool (for a while now) and yet it would seem Hypo patients usually go the other way with some constipation. Nothing else at all has come up on some extensive blood, urine and stool tests. the doctor wants to start me on treatment for the thyroid whilst the last of the labs come back in a couple of weeks (plus the dreaded prospect of a colonoscopy to follow) :0(

Anyway, the Doctor has prescribed Eltroxin to treat the hormone inbalance and warned that Eltroxin is known to cause diarrhea (which is the last thing I need). She has therefore prescribe the 25mcg and told me to keep an eye out for side-effects. I was doing some due-dilligence and came across this site and there is no way now I am going to go with the GSK variety.

Anyway, I have been phoning around chemists in Galway, Ireland and nobody seems to stock anything other that the GSK or Goldshield varieties. Can anyone on here help me, does anyone know of a local chemist that supplies either the Synthroid or Armour varieties which seem to (based on the above) have fewer side-effects?

I am on West-side of town but will travel to find something safe.

Much appreciated, and I hope you all find answers and relief!

Daniel

June 17, 2012 at 9:55 am
(845) e norton says:

hallo all i am from sunny South Africa my thyroid was removed on 21-5-2012 i am on Eltroxin 100g but but but I don’ t feel good next blood test is on 23-6-2012 will have to see then hey

July 4, 2012 at 8:19 am
(846) Shauna says:

Leaving a link you may already be aware of… but, the more the merrier on this list/Petition.

World Thyroid Register
http://www.worldthyroidregister.com/

Please visit.. if you haven’t already. Many links of interest… if you’re up to the read.

July 31, 2012 at 11:08 am
(847) Whitey says:

For Daniel: RE Galway (Ireland) pharmacies , Lackagh near Turloughmore (091 797056) are very approachable, and have supplied Armour in the past. They also do a brand of Levothyroxine that is not Eltroxin, not sure of the name of it though. Be sure to get screened for coeliac, could be the root of it all. Good luck, and keep asking, asking…I’ve been told so many times that something is not available and then the next person I ask says it is!

August 13, 2012 at 4:22 am
(848) Albina says:

I HAVE STOPPED USING ELTROXIN 100MG 6 DAYS AGO. FEEL MUCH BETTER. MAY I JUST STOP? DONT TRUST DRS ANYMORE. PLEASE ADVISE. SOUTH AFRICA

August 23, 2012 at 9:33 pm
(849) Christine says:

Hi everyone

About 6 weeks ago my pharmacist changed my levothyroxine brand from Eltroxine to Synthroid because I am on 75mg daily and Eltroxine doesn’t do 25 mg apparently. Since then I have felt dreadful and have had bloods done TSH came back at 2.3 – no T3/T4 done because it wasn’t requested. Has any one had side effects to changes from Eltroxine to Synthroid?

September 7, 2012 at 7:46 am
(850) Kelly says:

I live in Ireland and have been on eltroxin for a couple of years now. I don’t feel any better than before I started them. In fact I feel worse. My levels have never been normal and my eye sight is getting so bad. Also my skin and hair are so dry and damaged from this stuff. Also gained some weight and can’t seem to shake it no matter what I eat. I am seriously considering doing the natural medicines and see if I fair any better. I sure don’t want to live like this the rest of my life!!

September 10, 2012 at 1:06 am
(851) Karen says:

Hi there….when I first went onto eltroxin 5 years ago, I lost 7kgs in 3 weeks, but after that i was just stuck at a weight and no matter what diet or exercise I did nothing helped me to loose weight….so in nov last year my meds finished and didn’t even bother to get more cause I thought it was pointless….but in may this year I went back to the doctor and he put me back on eltroxin….and this time….instead of loosing weight….I have gained almost 6kgs in 3/4 months….I am still feeling tired, extremely over-weight, not sleeping properly….why am I gaining weight and not loosing? I live in South Africa and want to know is there any alternative to eltroxin in this country? I don’t feel better been on it….I feel worse, and extremely emotional! Please help!

September 28, 2012 at 7:16 am
(852) Justin says:

@Albina.. Albina, it depends on what reason you are taking this horrible medication. If you had a total or near total thyroidectomy operation done like me, I suggest you keep taking the tablet, as soon as us here in South Africa can freely purchase an alternative. I have no choice until that day, because I notice that if i donot take anything for my condition, my eyes really puff up, I get horrible bags underneath my eyes like I have not slept for days..I donot experiment anymore by not taking anything to see the outcome. I felt much better though, no joint aches and stuff, but obviously my body lacked TSH so it’s a different feeling altogether. It has been 5years now and I have been ignoring it because there is no solution, please if anyone in South Africa can advise where and how to purchase an alternative medication, that will be so helpful

October 30, 2012 at 9:07 am
(853) PETER MITCHELL says:

This Eltroxin is obviously causing many people lots of discomforts and other ailments. Surely GSK SHOULD look into it and change the chemical
formula. They have the scientists and should be able to sort it out. I’m tired of feeling depressed and lethargic. I constantly have a sore coxex
(excuse spelling); dry eyes; constipation and achy joints.

December 8, 2012 at 8:53 pm
(854) paul says:

How d guys , I HAVE ARRIVED I HAVE ALL THE SAME SIDE EFECTS AS YOU GUYS , TIRED ALL THE TIME HEAD ACES CHEST PAIN CANT CONSINTRATE HAVE BEEN ON ELTROXIN FOR A YEAR NOW AND DONT FEEL ALL THAT WELL , RIGHT NOW I HAVE TWO DIFFERENT BRANDS OF ELTROXIN MERCURY PHARMA AND GOLDSHEILD AS I AM ON 125mg PER DAY AND DONT FEEL TO GOOD , HAVE YOU GUYS GOT FLUORIDE IN YOUR WATER IF SO YOU MIGHT BE AFFECTED BY IT AS ITS TOXIC AND STOPES TYROID FUNCTION , IF I TAKE A BATH I FEEL DIZZY AND HAVE TO SLEEP FOR A FEW HOURS SO I CAN FUNCTION , I AM GOING TO STOP TAKING THIS MED AND TRY ARMOUR NATURAL , THANKS GUYS I THOUGHT I WAS ON MY OWN. P.S FLUORIDE IS POISON THIS MAY BE THE CAUSE OF ALL OUR PROBLEMS .. CHECK IT OUT . ALL THE BEST FROM . IRISH REP.

December 19, 2012 at 6:41 am
(855) gemma says:

I had to give them to my dog who was taking .1gms 8 in morning and 8 at night to start with at first they were wor but after awhile he was getting funny spots on his belly when i changed they went away now im in australia the options here are alot better n his hair is back to normal so im happy now.companys that use shit products n still charge high price should be shut down when dealing with people and pets lifes is no joke

January 13, 2013 at 1:35 pm
(856) Jilly says:

Hi everyone, and Happy New Year.

Gosh, it really annoys me that people in so many “developed” countries are still having major problems getting an alternative medication ! I’ve been finding many Facebook pages which have huge support and information – even Mary Shomon has one ! As you can see from the history of this feedback forum, I;ve posted in here, many times, now I use the Facebook pages to keep up to date with current research and advice from other sufferers.

I am still coming across people, here in NZ, that are being given Eltroxin by either their Dr or Chemist and are not feeling well. The most recent was on Saturday !! That lady was astounded when I asked her if she was hypo – I could tell by her eyebrows LOL. Her Dr has been wanting to put her onto antidepressants – a common outcome to the side effects caused. But now, she will be going to ask to change her meds.

All I can advise is to not give up, contact chemists to ask about what alternatives they can provide, stay strong with your Dr and take information to show what you are saying is real (astounds me how uninformed they are, but then, they are General Practitioners on all illnesses, so probably don;t have the time to keep up to date with everything) and join some Facebook pages to get ongoing support and advice,

March 22, 2013 at 5:17 pm
(857) Angela says:

I took Eltroxin for 18 months. I had brain fog, joint pain, headache, sore throat, swollen eyes and fingers, always tired, gained almost 8 kgs and was depressed. I always told my doctor I felt very bad. His answer was that the blood tests were all ok and that it was my Hashimoto causing all that bad feeling! And one day I stopped taking Eltroxin and changed doctor.
I am now taking Armour and feel much better.
I live in Switzerland and Eltroxin is given a lot here.

April 12, 2013 at 5:59 am
(858) I c says:

Hi
I’ve had problems with my thyriod treatment numerous times over the years, mainly due to the manufacturers changing the make up of the tablets, they started to add a bulking agent called Steraic acid and its salt partner magnesium Sterate ( which is a man made powder and is highly toxic, those working with it have to wear protective suits if they cut the material they must be detoxified) the then prime minister Tony Blair brought it in to the uk as a cheap way of making tablets.
I had an anaphylactic shock, after taking A brand , made by GoldShield, who added it without my knowledge, I changed brands …was fine …then they put it into theirs ….again I was in hospital.
I was put on liquid 112 mg Thyroxine then they stopped manufacturing ….new company took over to make Eltroxin in UK. I became very ill on it and had to stop it at once ….I have now been told to take Pure thyroxine made by a company called Martindale in uk ….but their capsules are not as strong and I have had my TSH go up to 53.36 instead of 4.00 whilst taking 112mgs i was then given 150mg to take witch put my t4 up to 46.23 and my tSH to 0.05 ….seems the doctors do not know what they are doing and the manufacturers need to be stopped putting poison into tablets because that is what Steraic acid is …that is why everyone is becoming ill and having reactions to their Meds …look it up on medical site for your selves

April 15, 2013 at 2:53 am
(859) Pram Poh says:

My wife is from Israel and there are several large forums covering this horrible big pharma scam extensively. One of the moderators have been ordering many different brands and the one most seem to use is the old formula Eltroxin by Glaxo that you can buy in India. There are several good online pharmacies and the drug is relatively cheap. I use the one which is cheapest when I am ordering. I have no problem with this and highly recommend it.
I have purchased mostly from swisspharmacy.com and now I get better price at clearskypharmacy.net
I also used to get from inhausepharma but i had a bit of a fight with them. they are good too though and i was just being an elephant tihi

April 30, 2013 at 11:09 am
(860) HowTo Password Hack Twitter Account says:

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May 15, 2013 at 6:41 am
(861) alison large says:

Have suffered with hypothyroidism for 21 years. Was originally put on levothyroxine but in 2009 was put on Eltroxin which seemed to suit me better. Have had more energy, have lost weight til recently when the surgery refused to perscribe it. Being back on Levothyroxine have become more constipated, feel more tired and lethargic. The pharmacist says he can still get Eltroxin. The doctor is checking my bloods to see whether she can increase the levothyroxine dose but I’m not holding out much hope as my blood tests have always shown good results, they don’t agree with how I feel from morning til night, on the edge of depression.

July 5, 2013 at 9:44 pm
(862) Myra magnussen says:

I am in Sydney Patricia and The pharmacist told me she had run out of my usual cheaper generic tablets so gave me OROXINE instead saying that they were made by the same company anyway. For the last week I have thought I was going crazy or had contracted some weird disease first a swollen left hand then the right hand ,sore joints, really tired. sore wrists and feet then last night could hardly lift my arm up sideways ……. Don’t quite know what to do ? If it is made by the same people surely its the same product ?

August 4, 2013 at 7:37 pm
(863) Daniel says:

Does anyone know what’s best to use in South Africa. Cause I’m about to loose it.can’t go on like this.eltroxin is making me the most wanna hit and brake everything and I’m gaining fat like nothing I can disscribe. Please someone help.

August 28, 2013 at 10:57 am
(864) Lynda Quin says:

I have no thyroid and have been on eltroxin for years …I am now on lethothroxine (in Canada) and I am also experiencing weird pains that show up in my elbow and legs … as well as having charly horses in my leg calves (never had before) …..also burning in my legs at times….

October 31, 2013 at 12:19 pm
(865) Toni says:

I was on Thyroxine for six months or so when it was discovered I had an underactive thyroid, due to the hospital closing down I went to my regular G.P and he put me on Eltroxin, after two weeks of taking this medication, I am suffering with joint pains and my bones are sore, I also had a very light menstrual period which is not normal for me, I still get swelling in only my right foot, sometimes it is so bad I cannot put a shoe on that foot. I am also having head aches which I have never suffered with before.
this medication?

October 31, 2013 at 12:37 pm
(866) Toni says:

I would also like to know if anyone in South Africa knows of an alternative please?

November 21, 2013 at 8:43 am
(867) Jo says:

I am from South Africa and experienced various problems for a few months (dry eyes, blurred vision, itchy and dry skin, muscle pains and the list goes on…). I thought my age had something to do with it …turning 41…until I found this website. I was also on Eltroxin and after reading all these comments I requested new blood tests and changed to Euthyrox (almost 2 months on it). I still experience some of the symptoms including weight gain now, which worries me and I wish I can find a medication that is working with less or none side effects.. I have asked my Dr. for Diotroxin, but he refused and prescribed Euthyrox.

December 19, 2013 at 9:53 am
(868) patricia says:

Hi everyone, I am also No. 835. Things did not go as simply as I hoped. The NON COATED Almus my pharmacist recommended is great. No pain, brain fog, fatigue, muscle restriction etc. What I did have was a problem taking more than 50mcgs in one go. So I have spread my meds through the day.

I always ask about 3T levels after blood test. They say I don’t need it. Not 100% but hey, I feel normal again. Fingers crossed for you all. Don’t mix. Experiment. Good luck.

December 19, 2013 at 10:02 am
(869) patricia says:

Hi everyone, I am also No 833 Patricia. Things did not go as simply as I hoped. The NON COATED Almus brand my pharmacist recommended is GREAT. No pain, brain fog, fatigue, muscle retriction etc. What I did have wa a problem taking more than 50mcgs in one go. So I have spread my meds through the day.

I always ask about 3T levels after blood test. I don’t need it yet. Not 100% but HEY! I feel normal again. Remember don’t mix, experiement and my good wishes to you all.

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January 9, 2014 at 8:14 am
(872) mary Maxwell says:

I am a retired lawyer and have been taking Eltrosin for 40 years with no adverse effects and recently I have had a running battle with the pharmaceuticall companies, the distributers, the chemists and my G.P.
The latter of whom will only prescribe the generic levothyroxine. I have also experienced negative effects from this and after much research I found out that the original Eltroxin is still being manufactured and I have this in an e mail. The distributors are now investigating under threat of legal action. We have laws in England which regulate the pharmaceutical industry and it is a criminal offence to create a shortage (possibly for reasons of ). Those licensed to produce, (manufacturers), distribute (wholesalers and chemists) and, prescribe (doctors) are under a duty to put patient care first.

I have also lobbied my Member of Parliament and am hoping for questions to be brought up on this issue.

Litigation is expensive, but I would urge those who are suffering adverse symptoms through the change in their medication to seek legal redress. The Medical Head Officer at the pharmaceutical company informed me that there are slight differences in the generic levothyroxine to the Eltroxin.

I hope this helps all those people who are affected by this issue.

January 11, 2014 at 12:18 am
(873) Jilly says:

Mary Maxwell – you might be interested in this….

http://www.scottish.parliament.uk/GettingInvolved/Petitions/PE01463

and this…

http://www.youtube.com/watch?v=CVXvYrJJ5dU

It’s regarding what is happening in Scotland :)

January 12, 2014 at 6:49 pm
(874) Dawne says:

Hi Mary, I am in New Zealand and am one of hundreds here in 2007/2008 who were severly affected by the change over of eltroxin to levothyroxine at that time so was very interested to read your comment. We were very lucky to have the help of a Pharmacist here who with a small group of affected patients battled to have a choice of funded throxine meds as at that time that was the only one available here. The numbers grew into hundreds and pressure was put on the Government for a change and was successful in now giving thyroid patients a choice in funded meds. There was much in the media and many of us who were scrambling to find other brands so we could be well again have stayed with those imported ones we managed to obtain at our own expense. Many here are importing the original eltroxin still.
I wish you well in your efforts and look forward to hearing the outcome.

January 28, 2014 at 8:21 pm
(875) Beaker says:

I have been on Synthroid (Levothyroxin) for about 45 years. Recently I needed my dose increased and got my new prescription (now Eltroxin, not Synthroid). Now, three months later I have an awful itchy rash on the front of my legs as well as my breasts. My breasts are also very painful.

In my history, it has been shown that any new medication added has in turn created an itchy rash in my body (to the point that I shake inside because I’m so itchy….and it’s almost orgasmic to scratch).

Now, this doesn’t happen overnight. Lipitor (for cholesterol) and my diabetes medications (Metformin/Januvia) took over a year to show up as a rash in my system…so I’m now off all of those. With my Synthroid to Eltroxin change it has been just 6 months and I’m itching all over. I just asked my pharmacist to switch back to Synthroid…I don’t care if I have to pay extra (in Canada here). We’ll see what happens in the next few weeks. I’m betting that the switch back to Synthroid will get rid of the itchiness and rash…..and I’m not a gambling gal…GRIN.

January 28, 2014 at 8:26 pm
(876) Beaker says:

Further to my prior comment I wanted to also add:

When I called my pharmacist and asked about my med change, they advised that there was no change….the main component was still Levothyroxin. So I asked….are the ‘fillers’ the same or do they differ? They said ‘they definitely differ….there are many newer/different components to the generic versions’.

This is what I think my problem likely is. There must be a ‘filler’ that just doesn’t agree with my body. And it and other must obviously be used in many generic drugs…hence the rash/itchiness reaction.

January 28, 2014 at 8:32 pm
(877) Beaker says:

Sorry….going to add one more comment. In this case…not only did I get a bad itchy rash….my breasts were not only itchy but also SO painful. I sleep on my stomach and had a hard time with the pain every time I had to switch positions.

Today, my breast pain was so bad this afternoon….at work….that I called into my pharmacist…..and had my meds switched.

Always remember….if you get a new symptom…..go back to when you had a medication changed/added….it could be that you’re one of those rare beings that are affected by this!!

February 26, 2014 at 8:33 pm
(878) Jilly says:

Hi everyone

If you read from the start of this thread, you’ll see my name often :)

We set up a Facebook page, rather than a blog, where we discuss thyroid issues, ideas, and webpages. Look up Thyroid Association of New Zealand, if you are interested.

Mary Shomon also has a Facebook site – fantastic info there !!!

I love this ongoing thread, here. But it saddens me, that so many peple are still suffering from side effects of medication that should be helping. It was 2007 that NZ got the changed formula, and thousands suffered. Even now, Dr’s are still giving it to patients who know no better GRRRRRR !!!!

April 28, 2014 at 7:11 am
(879) Jim says:

I’ve been on eltroxin since 2001 and no problem. Some people need to have a look at themselves, example;
“I live in Trinidad and Tobago , and I have been taking Eltroxin 100mcg since 2001. I have developed severe back pains in the last 2 weeks.”.

Really!
So no problems fro 13 years or more and suddenly it’s the cause of back pain?

Why don’t ye’all stop taking it and see how that works out for ya!

April 29, 2014 at 9:33 am
(880) Bob100 says:

Uhhhh If you have been following the topic, you will read that the eltroxin tablet formula has changed in many different countries, so what you take now, could be different than what you took 10 years ago due to the change.

I agree you cannot just stop taking your medication, I for one feel very fatigued, and yes, I also have different side effects, but I have learnt to live with it, because there is no solution. New Zealanders have really done well in raising this issue, other countries just don’t care, surely pharmacists and doctors need to do something, they not the one’s taking this damn medication how the hell can they tell you that it is not the medication!? Damn you doctors, scum of the earth I tell you!

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May 21, 2014 at 12:48 am
(884) Jilly says:

Sadly Eltroxin is still being prescribed, here in New Zealand. So many Dr’s just will not accept there is generally a problem. New patients have no idea why they are not feeling better. We get many new people on our Facebook site, like this.

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