We are working with the BBC on a story about people having to purchase their thyroid meds online because they have been withdrawn or refused on the NHS.
To be balanced, the journalist needs to know if anyone has had a bad experience of purchasing online i.e. if the medication made them worse possibly because it wasn't good quality or fake.
We are hoping this story will send a message to the NHS that stopping patients having a medication that made them well is forcing them to purchase online.
If anyone has had problems purchasing online in regard to side effects or not receiving goods, let me know - enquiries@thyroiduk.org
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lynmynott
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I hink one needs to be a bit careful here. We don't want a host of bad experiences recorded by the journalist with a strong negative slant on the dangers of buying abroad. It might give the authorities reason to try to prevent private T3 buying in future on the grounds of "ealf & safety". I know the aim is to shame the authorities for their refusal to sort out the T3 supply/cost problem, but it could rebound if not handled carefully.
My thinking exactly diogenes I suspect that the increased publicity, over the last two years, surrounding the adverse effects of people sourcing various medication themselves, is already setting up an ‘excuse’ to clamp down. Recently heard another couple of people saying they had trouble getting their meds from abroad. I asked but they didn’t come back to me with detail. But this happened to a few a couple of years ago. Meds being held up at customs in Heathrow, and since the increase need to have a prescription to get T3 from Greece.
It is always a worry isn’t it? We have to stand up to all this, but at the same time it is drawing attention to what people are having to do. I.e self source.
One of the issues I think needs addressing, as more and more are being forced down the self medication route, is how doing so might impact and affect people’s insurance policies?
I totally agree. I have made it very clear that patients need to do this due to the problems at the moment. I'm speaking to the journalist again tomorrow.
On another note, when I originally contacted a well known journalist a couple of years ago, he refused to report on the T3 situation as he said that he got ‘too much grief from both ends of the spectrum’. The spectrum being patients one end, Dr’s the other. To my mind that in itself should have been news worthy. Why is there a spectrum? What other conditions have such a spectrum? This highlights a major problem with attitudes, yes on both ‘sides’ but usually patient attitudes are a reflection of their treatment. Just in case your journalist is interested in that side of things?
Agreed. Purchasing avenues have been narrowing over the years, while prices going up and up. We've heard horror stories of supplies being held up at customs and people being treated as if they were trying to introduce class A drugs into the country.
I've seen a private endo who said he'd be happy to prescribe T3, provided I purchase the British brand (at the ridiculous extortionate price), and point blank refusing to monitor if I source my own.
I think a focus on how cheap T3 or NDT can be compared to UK prescriptions and the excellent results some of us have got from sourcing it ourselves can also send the message that the neglect from the NHS (driven by cost) is adversely affecting patients who a) don't have the resources (physical, mental or financial) to source their own drugs or challenge their GP advice, b) who don't understand the condition and may not even be diagnosed (I struggled for years, half of them knowing I was hypo, but GPs refusing to accept it), c) are treated, but on meagre doses that will never restore health, due to a blind obsession with TSH ranges of "normality".
Absolutely agree. I was thinking the same thing myself. We're on dangerous ground, here.
It's not particularly the fact that thyroid medications "may" be fake or of bad quality, it's more to do with the fact that you never know whether you will be able to renew your supply. The "authorities" seem determined to stop the trade into all illegal, unlicenced and prescription "drugs" which happens to include NDT, which for those like myself is essential for any sort of decent health and is certainly not an illegal product.
The reasons given for it being unlicensed are totally illogical and ridiculous, seemingly gathered together from thousands of other reasons that justify it being licensed in order to justify the unjustifiable.
eg "No trials have taken place which demonstrate the superiority of NDT over Levothyroxine."
BUT no trials have taken place which prove unequivocally the opposite and why should that matter anyway when the history of NDT shows that it is unnecessary to put it on trial?
eg "There is too much T3 in NDT, far more than in the human variety."
BUT they fail to understand that this is totally irrelevant as natural T3 acts in a totally different manner than synthetic T3 and is a different chemical anyway.
I totally agree. After all if we don't have 'side effects' they will lose even more money for : pain-relief; anti-depressants' and whatever else prescribed to try to control disabling symptoms. It seems that ALL doctors don't know any clinical symptoms and that symptoms can be relieved with proper thyroid hormones which suits the patient, not the doctor or the associations.
Totally agree Hidden 'Too much T3 in NDT', based on one study, back in 1990, that is dragged out to back up everything since. Based on 14 people, 9 of which were men, all euthyroid....Hardly reflective of hypo cohort. Too many poorly conducted studies and analysis based on old knowledge and ignoring new. Pigs thyroid was used in NDT as it was the nearest to human. If it was so ‘wrong’ all those thousands of people using it would be having bad reactions. And what’s more it would not have been a successful medication of choice for nearly 100 years... until the development costs of the synthetic T4 needed to be recouped. Bearing in mind that they must have realised around that same time that they had missed the fact that the thyroid produces T3 as well as T4, hence the ‘sabotage’ of NDT, (containing T3) being pushed off the market to mask the fact that T4 was ‘lacking’. That’s where the crux is. Mistakes made and no one wanting to admit it.
Pigs thyroid was used in NDT as it was the nearest to human.
One of the important reasons for choosing porcine thyroid was that pigs are far less seasonal than the obvious alternatives such as bovine and ovine sources. That avoids the problem that time of year affects thyroid hormone content and, possibly, T4:T3 ratios. Thus enabling the manufacturers to more readily achieve consistency. After all, they don't want to have to confine thyroid collection to a small part of the year.
I will have to check, but I think that in the UK the British Pharmacopoeia allowed all three of these sources for many years.
helvella Not heard that before, interesting. Yet they try to say it is hard to administer, hence levy so much easier, NDT dosage inconsistent and such. Quite laughable, if it were not so damaging. Now trying to play same games with T3 - making it more difficult to administer (dissolving in water and such)
In times past, the assay of desiccated thyroid products was by iodine content. This was an inaccurate way of assessing thyroid hormone content. In the first half of the twentieth century, Armour had an animal laboratory. They tested each batch to try to ensure consistent effectiveness. Some manufacturers were very much less careful. (I have no idea if they still do this or stopped many years ago.)
However, towards the end of the last century, the USA companies started properly measuring T4 and T3 content.
I see the "inconsistent" claims to be largely based on the history and not more recent reality.
It remains the case that there have been many more recalls of leovthyroxine than of desiccated thyroid. It was so bad that all USA levothyroxine manufacturers were forced by the FDA to apply as a new medicine in as they had repeatedly failed to live up to claims and promises of improvement.
Yes, agree the attempts to discredit NDT, e.g. “... its long-term adverse effects are uncertain.” From the NICE Draft - insinuating that there are adverse effects! Based on history and likely based on the ‘sabotage of 1963’? I understood that T4 had been recalled many more times than NDT, in fact was NDT ever recalled? My understanding is that it is a grandfathered product, because it predates licensing in 1938 and was used without incident for decades. Plus it is a natural product and did not require license. Though, I wondered if Amour had to alter the make up with some synthetic to put it through the licensing procedure? (Was that not in attempt to stop the negativity of ‘it is not a licensed product?)
I just get so cross at the constant repeated “because there is not enough evidence that it offers benefits over levothyroxine,” for both T3 and NDT when the reverse is also true. The wording is designed to promote T4 only. It is misleading. (MIS-SELLING) and the NHS/Gov are getting away with this. The more they do it the more it is engrained into medics and public minds. Big question is why? Why the adversity towards both NDT and T3? NDT because it contains T3?
I’m not convinced it is all about the cost. The adversity towards T3 was there before the price hike. I think there are a few options:
There is known mistakes in the make up of T4, not containing T3. How much damage has this caused to us patients? How many of us have other conditions that may have been caused by taking T4 when it does not suit? When the need for T3 was identified much money must have been invested into the development of T4. Couldn’t afford to admit mistake so dismiss T3, in any form. (NDT) Make it out to be difficult to manage. Promote T4 only.
It might be that the importance and benefit of good T3 levels are now better understood. They know that low T3 is a precursor to heart disease, diabetes, mental health etc. If T3 needed by nearly every cell, lack of it is likely to cause all sorts of health problems. If the benefit is acknowledged, for other conditions also, then people will end up with improved health. BP won’t want that. Would our gov want that, with the pension deficits they already face?
There is talk of saw release T3 (or t4/3 combi) being developed. There was something that was in the pipeline some years ago -Weetman’s sidekick, Ross was involved with it. It was rejected. Does that mean it was dropped altogether or is that still under development? Condordia stated (as part of their excuse for price hiking) that they were building new plant that they confirmed T3 and T4 would come off. They did not specify as a combi or separately. So is there a move to push all competition off the market in favour of a new medication that some ‘group’ will get rich off the back of? Bit like they did with pushing NDT out of the way for T4 only profit?
Last recall of Armour Thyroid (when I looked it up) seemed to be because of contamination, fungal or bacterial, rather than potency.
Concordia (Advanz) saying they were building a new plant is deeply questionable. For a start, they don't actually make their products. So they would not be doing any buidling. Of course, they might have reached an agreement to fund the building of a new plant (partially or wholly). And are they really asking us to believe the plant will only be used for T4 and T3?
They didn’t necessarily say ‘only’ T4 and T3. If my memory serves me (there was a couple of posted responses from Concordia when asked 18 months ago) They just said that T4 and T3 would be coming off this new plant. They didn’t say separate T3 and T4, or combined ....
I did hear of a combination pill being developed some years ago, that was rejected at some point, I wondered if that was still on the cards, no doubt a lot of development money invested that needs to be recouped, hence T3 being on the market might be a bit pf a problem, for the developers...bit like NDT when T4 was developed, and they realised that they hadn’t got it right!
There was a mention of a new pill that BTF were sitting on the review panel for a combination pill, around the time the Consultation response was due in. There was a lot of angry response questioning the lack of response to the consultation at the time. Someone pointed out that BTF were not against T3 and mentioned them sitting on this panel. The post was pulled soon after. Could this be why Concordia were building new plant? Whatever the situation it has been a long time in the planning and executing. We are seeing the end game here.
Maybe the existing plant is on its last legs - barely able to produce to the required standards and withstand formal inspections? (At least, for products such as thyroid hormones which require extrarordinarily precise dosing.)
That might explain the tight rein product testing imposed by the MHRA - every batch being submitted for testing.
The original impetus behind combination tablets was to replace desiccated thyroid with a "modern" product manufactured using synthetic hormones rather than animal sources. Hence virtually all adopted the same (approx. 4.2:1) or similar (4:1) T4:T3 ratio found in desiccated thyroid.
I am not sure what basis would be used for produing any new formulation combination tablet?
(Of course, the focus was entirely on the assayed hormone content and completely ignored whether thyroglobulin binding or other factors were what enabled desiccated thyroid to work well.)
I don’t feel that the publicity over the price of T3 did us any good and maybe a focus on people buying online is the wrong approach.
Surely as a country we should be appalled that some of us, with medical exemption certificates no less, are being told to source our own medication. I’d like to see journalists interviewing CCG members and GPs about what they have in mind when they suggest we ‘make alternative arrangements’. At the moment it’s us but what’s next? A lot of people take regular medication and they will be appalled by a good documentary. Go source your own anti-depressants / anti arthritics etc. What a dilemma, I’m scared to speak up!
I really don't want self-sourcing of meds to get banned, so I'd be very wary of this. I've had great results from the T3 and NDT I've bought for myself.
I reckon it may need an in-depth investigative programme eg Panorama or Dispatches working for months delving into the cost and contracts issues to unravel what is going on and get Govt to finally act.
I'm hugely concerned that the Govt will stop T3 (and other drugs) being imported and saying "it's for patients' safety" if we highlight problems getting it from abroad. And these channels are a lifeline for thousands of patients. It's scary to open this can of worms.
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