What's Happening to Thyroid Patients Taking Eltroxin Brand Levothyroxine in New Zealand?
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
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.
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.
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.
The new eltroxin is much weaker and wears off very quickly
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?
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
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.
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.
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????????????
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.
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…
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.
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??
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.
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.
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?
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.
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
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.
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.
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!
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.
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.
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.
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 .
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.
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.
The web site for the above is internationalpharmacy.com
You can purchase Armour and Nature-Throid without a prescription.
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.
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!!!
Please read above. No need to panic as Canada’s formula has NOT changed! Check with your pharmacist or GlaxoSmithKline to confirm.
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.
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.
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
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.
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).
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
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 ?
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 !!!
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.
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.
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
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.
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
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.
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.
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.
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.
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
where can i buy whole thyroid in nz
What is whole thyroid? Not sure if you could just buy it in NZ as it is probably perscribed by your Doctor.
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.
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.
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.
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
Hi Tory, You can contact me on spinner41@windowslive.com.
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.
Hello Jilly,I am in the process of forming a support group at the moment.
Email me if you would be interested.
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.”
Lynette
very interested in a support group !!
Will email you from work in the am.
Cheers for what you have done so far
Hello Maria,Thanks for that very interesting article .
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…..
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.
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
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.
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
It’s made the news again. Have a look at this.
http://www.3news.co.nz/News/Health/Medsafeurgentlyinvestigatingthyroiddrug/tabid/420/articleID/60783/cat/59/Default.aspx
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.
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.
Anyone recommend a good doc in Hamilton ?
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
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.
Hi Marie, Yes, the link worked .
I could consider my Doctor as “Thyroid friendly”
I will think about it .
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
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.
hey jilly. the things we females have to go through in life. another blonde moment here, but, what, exactly is WTE?????????? and has anyone visited the site stopthethyroidmadness????? my gosh it is hard reading, totally non pc (which would be a change for nz’s) i have just finished reading it and it makes for some pretty scary reading, in fact i am off to the docs today to get a barrage of testing done and to ask to be put on whole thyroid. no one told me that severe mood swings and rages apart of hypothyroidism.. with my children this concerns me as i have to exert super self control not to lash out at them and here i thought i was going flipping mad.. we need more docs who open minded to change from the traditional meds… you would think that living in auckland there would be…..hmmmmm. i think not…..
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
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.
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.
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 2×50g daily then 3×50g 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.
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.
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
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)
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
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 ??
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.
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.
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.
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
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…
angela email me at wldchld8614@aol.com..I am in massachusetts…
cheryl
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.
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.
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!”
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.
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.
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!
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.
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.
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.
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 !!!!
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.
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.
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
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.
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.
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.
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.
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.
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.
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…
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.
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…..
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.
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.
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!
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
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?
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!!!!!!
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 !!
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.
Jilly
do you have a link to the other discussion thread you mentioned?
Angela – it is on trademe, under General, thyroid people.
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..
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
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
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.
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
tried to email pat.jones@xtra.co.nz with no success .I feel as if I am being slowly poisoned.
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?
Angela– Nope did not get your email….try again ok..
I sent Pat an email have have recieved a reply recheck the address.
Cheryl
I sent it again to wldchld8614@aol.com
it keeps bouncing back saying it wont accept mail.
Angela
NZ is not alone, have a look at this petition in Wales.
https://217.140.43.190/gethome/e-petitions/p-03-137
Angela…..put your email address on this site and i shall email you ok……No idea why this is bouncing back.
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)!!
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.
Hi Cheryl
its ccole@xtra.co.nz
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?
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.
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??
Here is the link to trademe
http://www.trademe.co.nz/Community/MessageBoard/Messages.aspx?id=26852383&topic=5&L=1&C=1
Thanks Jilly will look it up..
Hi Cheryl
I am receiving your emails and have replied, but it doesnt seem like you are receiving them??
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
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.
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.
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.
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!
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.
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.
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??
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.
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!!!
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/
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…
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.
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.
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 !!!!
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.
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?
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)
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.
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.
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.
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.
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.
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
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.
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.
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.
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 .
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.
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
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 ?
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.
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.
What is a suitable alternative? I don’t want to buy an alternative that is a) dodgy or b) made with the same ingredients.
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.
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.
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.
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
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
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.
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
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.
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.
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.
Kahu can you email me ccole@xtra.co.nz
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.
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…
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
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.
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.
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
Thanks Jilly. Sorry about the spelling!
Ahh.. I never worry about spelling – tis the message that is more important
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
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.
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
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.
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 ??
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.
is goldshield gluten free?
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!
I found the web site http://www.stopthethyroidmadness.com a number of years ago. The information Janie presents is quite amazing. I had never heard of Armour Thyroid before, now I take this as my thyroid supplement. The whole site is a Pandora’s box if information, it is my “on-line bible” for advice.
At last I am beginning to understand more about thyroid disease due to information from this site, from http://www.thyroiduk.org ( created by Lyn Mynott), http://www.thyroidresearch.com (created by Edna Kyrie, a truly amazing lady, who has painstakingly recorded past research on Thyroid Disease from The British Library for us all to read). My grateful thanks go to my new doctor who let me try Armour.
In the book “Thyroid Disease The Facts” Drs Bayliss & Tunbridge quote —“Medicine is not an exact science. It probably never will be, no two patients are exactly the same. Peoples susceptibility and their biological and psychological reactions to the same disease will always differ.——-” They went on to say—- “ It is however, the patients from many lands, whom we have treated or supervised, who have undoubtedly taught us the most. To them go our special thanks”.
Maybe (hopefully) some doctors will take notice of this advice.
fff
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
Is anybody else finding it hard to read the posts for this subject.
sorry this seems to be the only way i can read all the comments left
Tasha, sorry, I have no problem reading them, so can’t help
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.
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 !!!!
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.
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.
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.
Sorry I gave you the wrong day , my mistake the article will be shown tomorrow.
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
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!!!!!!
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.
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.
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!!!
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.
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.
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
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
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.
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.
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????????????????
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 !!!
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!!
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.
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.
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.
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.
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.
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.
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
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.
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
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
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.
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?
Jilly – Thanks for your reply, I have been reading that website. Does anyone know of any Doctors in West Auckland that would prescribe Armour.
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.
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.
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.
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
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…
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.
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
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 !!
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!!
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!!!!
Wow..I know how you feel!!! Please get another doctor because there is supportive doctors out there with other options.
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
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
Hi Henri
Where do you get these natural hormones in NZ?
Would love to know.
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.
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.
Yes I have an uncontrollable muscle spasm around my left eye – is that what you mean Tasha?
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.
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.
Kerry I have felt better on Almus than I have in the 14 years since my op. Good luck.
Kerry I feel better now than I have done since the op 14 years ago. Good luck. Allow about 2 weeks.
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.
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
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!!!
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.
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.
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!
http://www.scoop.co.nz/stories/PA0808/S00340.htm
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
http://www.national.org.nz/Article.aspx?articleId=28405
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
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.
good morning ,have i missed mr campbell on radio or was i on the wrong station.
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.
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.
Angela, can’t send email, keeps bouncing Re:- comment 186. Email me kahua51@xtra.co.nz
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
Kahu
you have mail
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 !!!!!
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.
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?
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
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
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?
I have been on Almus for over a week now, had been on ELT 75% and getting better.
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.
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.
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.
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???????
Thanks Ian S. That link got me there.Go Jackie Blue!
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.
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.
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.
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!
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
has anyone else noticed a dramatic slow down in hair growth and that the hair tends to get oily really fast????
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!!!!
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!
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.
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?
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
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.
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.
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.”
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
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
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
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.
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!
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.
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.
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!!
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.
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.
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.
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.
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.”
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.
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……
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!
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!
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.
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?
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
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…
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.
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.
Denise
Alan would be able to answer your question. he has given us this email if we have any questions
chemistry.stain@gmail.com
Thanks Angela, much appreciated
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!
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
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.
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!
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.
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
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.
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?
yay Zoe!!!!
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.
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
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!
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…
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
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
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!
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!?????
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!!
Read the August 30 updated information: Alternative to Thyroid Drug Eltroxin Is Sold Out in New Zealand
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!
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.
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.
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
So basically what Pharmac are saying is that we are back to the same hopeless position…. nothing has changed.
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?
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.
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…………
Watch for confirmation. It’s looking like we are getting an alternative!
“Watch for confirmation. It’s looking like we are getting an alternative!”
Is this a Government funded alternative from Pharmac?
Where are you last 2 getting that oh-so-welcome news from?
An alternative…interesting! I wonder what drug they will dig up this time, it’s a little too late for some people!
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.
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…..
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.
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.
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…
Angela I agree. We still have to keep on getting the word out. It can’t stop here.
Angela I agree. We can’t stop now.
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.
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.
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.
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.
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
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)
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.
**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’)
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
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.
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)
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.
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!!
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.
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.
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.
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?
Kez
have a look at the trademe thread go to:
http://www.trademe.co.nz
then community, message board, general, then thyroid people.
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?
Hi Kez..
Have a look back at the last bit of (382).
Hi Pauline…thank you. Question again, is it worth my while taking a natural thyroid medication?
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
I have had these symptoms but don’t take that brand. Tingling, pulsatile tinnitus, sweats, etc. etc.
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.
Hi Jopalis. I have found that if I get excessive sweating I know I’m getting too much thyroxine.
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…………….
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?
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.
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.
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.
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.
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
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).
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!!
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
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?
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.
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
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….
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!!!!
Is there anyone from Germany on this thread, that is having problems with Eltroxin
Would love to know what other countries you are all from. Is this problem just New Zealand?
Has anyone any suggestions how we can let the rest of the countries who are on those meds know why they are so ill?
on TV 3 tonight. the article and video link
http://www.3news.co.nz/News/GovernmenttoannouncealternativedrugtoEltroxin/tabid/209/articleID/70886/Default.aspx?ArticleID=70886
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.
Hi Cathy..
Tried your e-mail address but the mail-man refused to deliver.. Can you try contacting us at mariner10@xtra.co.nz
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
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.
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)
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.
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 ??
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.
http://www.moh.govt.nz/moh.nsf/indexmh/eltroxin
also click on the word document at the end of the page.
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
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
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.
This one will make your blood boil – who the heck does he think he is?????
http://3news.co.nz/News/NationalNews/Somereactionstodrugchangemaybepsychologicalexperts/tabid/423/articleID/71078/cat/64/Default.aspx
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.
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
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.
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.
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.
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.
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.
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!!!!!!
another link – todays newspaper
http://www.stuff.co.nz/4690713a6579.html?source=RSSwaikatotimes/localnews_20080913
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.
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
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 .
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.
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/
Have just read that site above Angela. Can’t help wondering what it takes to get the World Health Organision involved.
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.
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
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
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!
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.
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.
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!
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.
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
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 !
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>
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 ??
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!!
Go Jackie Blue!!!
look at this one
http://www.voxy.co.nz/politics/blue-explanation-wanted-why-alarm-bells-didn039t-ring-over-eltroxin-results/5/
that didnt seem to work
try this one
http://www.scoop.co.nz/stories/PA0809/S00333.htm
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
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
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.
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.
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.
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?
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.
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!).
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.
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.
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.
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.
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.
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.
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.
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.
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*
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*
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.
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!
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!!!!!!!!
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 .
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.
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.
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???
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
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?
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.
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.
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
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.
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!
Jilly I have hashimotos and wondering why whole thyroid may not be suitable to take
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
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.
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.
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!!!
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.
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?
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.
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.
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
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?
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.
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.
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.
Hi again, Dawne,
Just put my glasses on, the pills have a gs on the other side. So they are the same. gutted.
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.
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.
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!!
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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?
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.
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.
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.
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…
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
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
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
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.
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.
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.
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.
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.
Hi Pauline. Just a catch up to see how you are going on the Synthroid. Hope things are improving for you.
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
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.
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!!
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.
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.
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.
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.
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.
Jane – together we are strong, separately we are not heard – thank you so much for giving your strength
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???
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.
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.
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.
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!!!!>???
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.
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.
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.
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.
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
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?
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
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
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!
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?
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.
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?
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.
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.
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.
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.
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.
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?
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.
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?
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)!
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
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.
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.
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?
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
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.
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!#$%^&*()!
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.
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!!
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!
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.
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.
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?
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.
*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.
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.
John
how is Pauline?
Jane
how are you?
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.
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.
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?
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..
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.
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?
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.
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?
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.
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.
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.
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.
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’.
Sorry – that should read ‘After FOUR days of taking Syntrhoid I refused to take any more.’ I did give it a little more chance!
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.
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.
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.
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.
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.
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.
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.
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!
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
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!
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.
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!!
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?
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?
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
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?
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
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!!!!
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.
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.
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..
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.
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?
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.
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. ????
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?
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.
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