The reason why levothyroxine is prescribed rath... - Thyroid UK

Thyroid UK

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The reason why levothyroxine is prescribed rather than NDTs (in the USA) but we - in UK - also seem to follow the USA

shaws profile image
shawsAdministrator
19 Replies

This is a link and it is by Mary Shomon in the USA who is an advocate for proper treatment for those who have dysfunctional thyroid glands.

I read a few weeks that Oprah Winfrey - Mrs. Clinton and others took NDTs for their hypothyroidism. If you have money you can get what you want:-

Eventually, NDT was introduced in the early 1900s as the sole hypothyroidism treatment on the market and has been available by prescription since that time. It is regulated by the U.S. Food and Drug Administrative (FDA), but because it was on the market before the creation of the FDA, the drug has not gone through the formal "new drug approval" (NDA) process and was instead "grandfathered" by the FDA.

In the 1950s, drug companies introduced levothyroxine, a synthetic form of T4, as an alternative to NDT. The launch of levothyroxine was accompanied by great fanfare and major marketing, casting NDT as an archaic, old-fashioned, and unreliable drug in comparison to the new, modern, and reliable levothyroxine. Still, levothyroxine was not required at that time to go through the NDA process. It too was grandfathered by the FDA, until 1997, when the FDA declared levothyroxine a "new drug" and called for NDA approval.

The drug companies making levothyroxine have become primary funding sources for thyroid and endocrinology associations, medical school educational programs regarding thyroid disease, research grants to groups and individuals studying levothyroxine, and have distributed many millions of dollars in free samples, lunches, and logo-imprinted gifts to promote the drug. There have also been whisper campaigns to doctors and pharmacies suggesting that NDT is "going off the market" or "being banned by the FDA." These whisper campaigns seem intent on discouraging physicians from prescribing NDT and discouraging patients from taking it.

healthcentral.com/article/o...

One of Thyroiduk's Advisers (deceased) who was an American who also stated that it was due to corruption that levothyroxine became the No.1. prescription for those who were hypothyroid.

healthcentral.com/article/o...

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shaws
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19 Replies
Wired123 profile image
Wired123

The irony is that I’ve seen 9 different private Endos in London including 3 professors yet none are interested in NDT and dismiss it outright.

It’s certainly not being refused on cost grounds privately they clearly have a reason not to prescribe it.

Whether I agree with them or not is another matter. There are issues with NDT but equally there are issues with Levo and Lio.

Until they can regrow our thyroid glands for us we have to keep up the fight!

shaws profile image
shawsAdministrator in reply toWired123

I believe the people you consulted have been trained upon levo alone. They probably never heard of NDT (prescribed since 1892) and their organisation stating it should no longer be prescribed but to only prescribe levo. They have to toe the line.

They do not understand that it saved lives from 1892 onwards - without blood tests but the skill of the doctor alone) and still does today but to withdraw it I wonder if someone was given a back-hander to slowly push it off the prescribing. They also appear not to be knowledgeable and that it also contains all of the hormones a healthy gland would do. If it could save people's lives from 1892 and still does today, who has paid them to ignore NDT and those at the 'top' obviously withdrew it just because they could. I don't know whether or not the companies that produce levo pushed to have it withdrawn.

Wired123 profile image
Wired123 in reply toshaws

Well 9 different people, one was mid-40s and the professor who diagnosed me is probably around 80 now. So ive seen a whole spectrum of people including some who are highly rated on the forum.

NDT is a complete no-no in their heads though luckily I was finally given T3 which was life changing.

I do feel that NDT is being discredited as ultimately it’s made by small producers with small budgets. I’ve worked on big pharma and know their business model is big marketing budgets on high margin products (low cost to produce and high price). Their marketing is often a whole range of activity to push their own whilst showing why the competitor product is inferior.

Now if the manufacturer sales rep are constantly pushing the NDT is “not safe”/“inconsistent dosage” line then it sticks in the minds of doctors. Sadly I’ve had those lines repeated to me by multiple Endos, so clearly the big pharma strategy is working.

helvella profile image
helvellaAdministrator in reply toWired123

I do feel that NDT is being discredited as ultimately it’s made by small producers with small budgets.

AbbVie is now the manufacturer of Armour - and has a revenue of around 45 billion US dollars a year. Not small by any means. Nor were Allergan/Actavis and Forest before them.

Towards the end of Thyroid BP the attitude was dismissive as in this document

helvella - The end of Thyroid BP

A published letter which highlights the attitude regarding desiccated thyroid shortly before it was dropped from the British Pharmacopoeia.

dropbox.com/s/zbiyjk19wjsq4...

Which includes this:

Thyroid extract

SIR, — We write to suggest that thyroid extract (Thyroid, BP) be removed from the British Pharmacopoeia and that its manufacture be abolished.

We continue to see patients who have been diagnosed as having myxoedema and who are being treated with apparently adequate doses of thyroid extract but who are clinically and biochemically hypothyroid. They have subsequently responded to thyroxine.

Although it is never possible to be certain that drugs prescribed are being taken, there is good evidence the potency of thyroid extract is variable and its shelf-life dated. As both active constituents, thyroxine and triiodothyronine, have been available for many years we see no reason for the retention of thyroid extract, which we consider to be dangerous.

W van't Hoff

G M Besser

R Hoffenberg

J S Staffurth

D R London

David C Anderson

R Hall

J Jenkins

G F Joplin

R L Himsworth

Peter Sonksen

Br Med J 1978; 2 doi: doi.org/10.1136/bmj.2.6131.... (Published 15 July 1978)

Cite this as: Br Med J 1978;2:200

And desiccated thyroid really did have a problem. Assay of the product was done by iodine content - not T4 and T3. And, over the years, there had very clearly been consistency problems. Some patients would swear that, for example, Armour was much better than another make.

Years ago, Armour ran a comprehensive testing laboratory which included animal testing of finished product. They claimed this confirmed that the iodine assay was reflected in actual potency.

Wired123 profile image
Wired123 in reply tohelvella

Interesting post.

Now one wonders two things:

1) Why doesn’t AbbVie spend more money on promoting Armour? Perhaps it’s a deprioritised brand in their portfolio that they don’t put any money behind marketing. I’ve worked in pharma and there are brands that companies don’t bother promoting as strategically unimportant and just happy to take whatever sales come along.

2) J Jenkins is a signatory of the letter, could they be related to Dr Paul Jenkins who is actually a big proponent of Liothyronin/T3?

helvella profile image
helvellaAdministrator in reply toWired123

Knowing nothing about AbbVie beyond its hugeness, I don't know. But I suspect they never really gave a fig about Armour - and it just came as part of what they bought.

Owning Synthroid as they do, it is interesting to speculate what they might do with Armour. But I don't feel hopeful.

Jenkins is quite a common name. And all too easy to fall into traps when trying to establish genealogical links.

Wired123 profile image
Wired123 in reply tohelvella

Well we should try and do some digging to see if Armour is actively being promoted or not. Will see if I can find out myself reading their company accounts.

Jenkins is very common but will be interesting if there is a link given they both seem heavily involved in thyroid conditions.

Carys21 profile image
Carys21

Always comes down to money doesn't it

Starfish123 profile image
Starfish123

I thought it came down to the fact they are not insured if they prescribe and something happens, eg death from it.

helvella profile image
helvellaAdministrator in reply toStarfish123

They must be insured - at least as far as a payout to a patient suffering. It is a legal requirement in the UK.

Their insurance might have conditions, that I do not know about.

Starfish123 profile image
Starfish123 in reply tohelvella

I understand it’s their medical indemnity insurance that will not cover them, they prescribe at their own risk, hence many won’t prescribe.

helvella profile image
helvellaAdministrator in reply toStarfish123

My point was that they cannot practice at all without insurance.

If a doctor prescribes without insurance in place, they are acting illegally. Hence consequential injury, damage or death can only occur in an already illegal situation.

Conceivably an insurance policy would impose some sort of a limit on what is allowed to be prescribed. I do not know how sensible that would be because circumstances can arise which are difficult to foresee and such limitations could themselves cause further problems.

HashiFedUp profile image
HashiFedUp

Surely… it can’t be about money can it? 😂

BrynGlas profile image
BrynGlas

Shaws, yes I see this and it is all about money in my opinion.

If the med's producers can make it and sell as much as possible of it, no matter the side effects that patients have, that is what they want to do. They are willing to go to any lengths to get it prescribed rather than any other medication, of any sort, not just thyroid medication.

Certainly not anything like NDT which also includes lots of trace elements which we can't find a synthetic version of anywhere, so we miss those when put onto synthetic hormones of any sort.

This reminds me of the first time I read the Atkins diet, in the late 1970's. I was in Hong Kong then and I heard about this super-duper diet and read the book cover to cover in a couple of days.

One of the things that he said in that first book I read, was that it was the American cereal and sugar producing companies - a very big money making section of the market - who did not want ordinary people to know about alternative diets to zero fat and low calories. There has been a lot of money made from people desperate to lose weight, hasn't there?

But these days we know much more about dietary carbs, sugar etc. Even the NHS seems to be feeling that they need to change things as far as their advice goes thank God, hopefully that will get better too.

How much more money are the pharmaceutical companies getting from making synthetic T3 and T4? Yet they increased the cost of T3 so much that it was unaffordable???

Could it be that they get more money from the treatment of hypo patient's symptoms, rather than patients being able to actually get well by being given T3 which has more chance of treating our hypothyroid problem. That has more of a chance of curing a lot of our many symptoms and we wouldn't then need the anti depressants, the obesity problems, diabetes, etc etc and the myriad other meds we need to feel well.

When the price of T3 rocketed, our own government only want to stop people from being diagnosed with hypothyroid, no matter what it takes because of the cost! But if we were treated with the right meds, they would save money, I am sure.

That is all it is, money making/money saving. It is scandalous, but we poor fools never would think that it was only money that has stopped us getting well.

I was diagnosed low in the 90's. But have never felt well since then, because I could only be given Levo which never suited me. I am doing well now on Tiromel (which I had to source and finance myself) and Levo but I have had to put in the effort to work out myself and this Forum got me there.

But it took me all this time to decide that I can't get treated properly via the NHS here in Wales at least and the only one who I can trust is this forum and myself.

I truly do believe that money is the root of it all. The NHS has lost it's way.

shaws profile image
shawsAdministrator in reply toBrynGlas

Some people are sensitive to something they eat. So would we insist that they eat it - come what may if the person is more unwell after eating? No - we'd give an option.

BrynGlas profile image
BrynGlas in reply toshaws

We are definately short on options, even if we can access/afford NDT. I think I will be trying NDT if I can ever find any or afford it.

I am convinced that all the little extras, which synthetic hormones can't provide is what is missing, though I am much better on T3 than I was without it.

nightingale-56 profile image
nightingale-56

Much like your wife, I am faring much better on NDT, with bloods improving, and such things as HbA1c much lower. I certainly agree with all you say about GPs, and feel that NHS just uses the cheapest option nowadays.

shaws profile image
shawsAdministrator

I had to diagnose myself. After the GP told me I had absolutely nothing wrong with me. He didn't seem to notice my TSH was 100 - and as I had never heard of hypothyroidism before or knew anyone who had it I only knew I felt very unwell.

Thankfully someone told me to get a blood test and I've gone on from there. Thanks to Thyroiduk.org.uk too as I was so glad to find a way forward.

LAHs profile image
LAHs in reply toshaws

Yes, the discovery of my hypothyroidism was completely fortuitous. A friend had a problem with her son and before I had hypothyroidism she told me in detail how she discovered her son asleep in bed not wishing to go to his university lectures. She told me how shocked she was and that she and her husband bundled him into their car, took him home and got him to the doctor - again, fortuitous, he was a good doc. When I had similar symptoms I told my doc to look for hypothyroidism - and he found it - nodules on my thyroid gland. And I was saved from thyroid cancer.

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