T3 liothyronine - for anyone already prescribed or trying to be prescribed - drug firm fined at last

[ChottAlg]

Hello everyone,

I spotted this in today's edition of The Times and thought it'll be particularly relevant to those of you who are currently prescribed T3 or struggling on levo and still trying to get your GP to prescribe it for you. I'm a Times subscriber so I hope the share links below will work for those of you who aren't. I have a feeling the share links only last for a certain amount of time. If the links don't work then I'll try to copy paste the article's content here instead.

Thyroid drug firm fined over 6,000% price increase after Times exposé

The UK’s competition watchdog has handed a pharmaceutical company a multimillion-pound fine after it increased the price of some thyroid medication by more than 6,000 per cent.

The Competition and Markets Authority’s (CMA) powers were granted by legislation passed last year in response to a Times investigation .......

thetimes.co.uk/article/6f30...

And here's a link to an earlier related article back in Dec 2018 on the same issue:

NHS cuts access to vital drug liothyronine after cost increases by 5,600%

The number of NHS prescriptions for a life-changing thyroid drug has fallen by about 40 per cent after a pharmaceutical company put the price of a tablet up from 16p to £9.22 — a rise of 5,663 per cent. Thousands of patients have been denied liothyronine because healthcare commissioners will not pay for it........

thetimes.co.uk/article/0fa7...

And another article, a patient first hand experience, published on the same Dec 2018 date

Why do drug firms exploit vulnerable patients like me? - by Fiona McGowan

thetimes.co.uk/article/2cc0...

Happy reading everyone.

[shaws]

Thanks for posting and it is about time pharmaceutical companies were fined for extortionate prices for essential life-giving hormones for any patients but, in particular, hypothyroid patients.

This caused immense worry and nowhere to source them in the UK (except if they had a private prescription) the withdrawal of medications that had restored patients' health. Many had to source their replacement thyroid hormones from abroad and that should not be necessary, but was if the patient wanted to retain their good health. Some were unable to do so.

We also used to have NDTs (natural dessicated thyroid hormones), These were the very first replacements that saved lives from 1892 so were well proven as safe but these were also withdrawn - not due to the cost- but because the Association just decided to do so.

They did not care at all about the worry and ill-health which would return to many patients who could no longer get prescribed their preferred thyroid hormone replacements.

If someone could afford to pay for their thyroid hormone replacements they would consult a private endocrinologist. I think the professionals forgot that 'healing' a patient's clinical symptoms' were paramount.

I believe the professional association should also be taken to court for deciding that NDT should no longer be prescribed in the UK and for denying people to have the very first thyroid hormone replacement which had restored their health and not caused immense worry and then symptoms returned. Surely a collective of patients who were fit an well on NDT should not have had it removed.

Also that T3 can only be prescribed if an Endocrinologist prescribes. Whereas a GP could do so in the past. Considering that Endocrinologists are very busy why would they want to have a patient consult with them only for the purpose of prescribing T3 that a GP can do? Does this mean that a patient was not being truthful when they stated they were still unwell on levothyroxine but well on liothyronine?

[nellie237]

Andrea Coscelli is my new hero. Also Peter Taylor, Endocrinologist, and The Times.

I think that those responsible at the Dept of Health & Social Care should also come under intense scrutiny.

So sad that people have suffered for this vile greed.

[TaraJR in reply to nellie237]

The excellent Billy Kenber at The Times wrote the article this week. He's been on the case since he (I think) broke the story in 2016. He also has a book coming out in October!

amazon.co.uk/Sick-Money-Glo...

[Churchie]

I’ve searched and she doesn’t get answer that I want to know as well. WHY? What is their justification for the price hike and HOW have they been getting away with it for so long?? And will it ever change?

[endomad in reply to Churchie]

The Why is money and the HOW is money, people have been signing off the price increases every time, most likely paid handsomely for that signature. My MP Jon Ashworth has been trying to find out who agreed and been stone walled all the way. I doubt it will change anything and I doubt the fine will be paid, too many shareholders own the rights to the T3, I was horrified to find that all the profits belong to a private equity company not the drug company!

[Hypopotamus]

They got away with it because NHS purchasing staff agreed to pay the increases. Why they should have done that I will leave to your imagination.

[Hypopotamus]

I wonder if we could sue this company for the damage that it has done to our health and/or pockets?

And where does the money from that fine go to?

[Frances0008 in reply to Hypopotamus]

That’s not a bad idea !! Class action!

slatergordon.co.uk/collecti...

[endomad in reply to Hypopotamus]

Richard Tice is pushing for that, removing board members, suing share holders etc he was on Talk Radio this morning, fast forward to 10.11amyoutube.com/watch?v=PZfzehF...(Not working as expected?)

I have emailed him.

[Stourie in reply to Hypopotamus]

It said that the money was going to the treasury but that the nhs could appeal and try to get it back. I doubt they will because they signed off the price. Huh the company’s are going to appeal too so no money will likely change hands. Jo xx

[Frances0008]

Does this mean the nhs will start giving out t3 again?

[Singoutloud in reply to Frances0008]

I would like to say yes but in reality I suspect nothing will change. Doctors have spent so long denying cost is the reason for not prescribing T3, it would be difficult now for them to do a U turn without losing face.

[m7-cola in reply to Singoutloud]

They need a face saver of some kind. Maybe like the ‘discovery’ that long COVID symptoms can be alleviated by T3. So ‘finally’ there is proof of its efficacy.

[shaws in reply to Singoutloud]

The fact that NDT was also withdrawn by the 'experts' - leaving many patients who were well upon this with anxiety and worry of what could/would replace it and how could they source elsewhere. Why be forced to source thyroid hormones from elsewhere in the world? Only if desperate to feel well again.

I cannot understand how these decisions are made by those who do not have dysfunctional thyroid glands so are completely unaware how clinical symptoms can make someone so very unwell and incapable of having a normal life. Many also have lost their livelihoods as their brains don't function as they did before being hypo - when we're unwell our whole being is trying to figure out how best we can restore health.

Despite NDTs being prescribed from 1892 and safety proven and contains all of the hormones a healthy gland would do, as before that hypo patients died a horrible death. These 'decisions' were made by those whom I assume do not have problems with their thyroid hormones so don't really understand how disabling symptoms can be.

[nellie237 in reply to Singoutloud]

I am hopeful, only because my daughter spoke to an NHS Endocrinologist a couple of weeks ago as part of her routine Type 1 Diabetes/Thyroid (she has Hashi's too) checks, and the Endo mentioned testing her FT3..........and that's never happened before.

[helvella in reply to Frances0008]

Agree with Singoutloud but will add that even the current price makes it pretty expensive - compared against the costs of levothyroxine, most anti-depressants, etc. And GPs will inevitably calculate on the basis of per tablet costs rather than whole person wellness.

[Frances0008 in reply to helvella]

Did they already lower the cost then? I thought this meant the price would go down?

[helvella in reply to Frances0008]

On the basis that there are three companies supplying the market now, I suspect the companies will argue it is competitive. Therefore no change in pricing needed.

(It is currently somewhere around a hundred pounds, rather than the peak of around two hundred and fifty pounds, for 28 tablets.)

[McPammy]

I don’t understand why the NHS cannot purchase Liothyronine from a different source. I use ThyBon Henning. This is manufactured in Germany. In Germany it’s about £60 for 200 20mcg tablets. Surely the NHS must be able to source from elsewhere. They did with PPE when in crisis at the beginning of the pandemic. Although they did make several costly blunders. It beggars belief, who is running the buying dept in our NHS, they should be fired and held to account. It’s public money!!

I’m one of these people who was refused T3 Liothyronine even though I was unable to walk, sit up and in a terrible way. I lost my job. I was housebound. It was only going private that I genuinely believe saved my life. I put on 4st in 18 months. Now on T3 privately I have my life back. I can also get T3 through the NHS as my positive response was so compelling. My GP backed me but we had a real struggle convincing the NHS Endocrinologist.

[helvella in reply to McPammy]

The NHS is required to use medicines with UK licences in most circumstances. (Occasionally a specific non-UK product is needed. And issues such as shortages may result in non-UK products being supplied.)

In general, this makes sense. The Patient Information Leaflet will be in English, the packaging will conform to UK standards, and issues of equivalence will have been considered. (Even if not sufficiently, in the view of many patients.)

That the NHS seems unable to get a licence issued for a German (or other) product in order to save a fortune does seem crazy. Perhaps Sanofi Deutschland (owners of Henning) were unwilling to supply or get involved?

[McPammy in reply to helvella]

Thank you. That does make sense I guess. The Liothyronine I now get from the NHS is unlicensed. I get Mayne Pharma 5mcg brand. The bottle states manufactured in Germany but I believe it’s parent manufacturing base is in the USA. I think I’m the only person at the hospital on it ( Halton). I get the monthly update on Liothyronine and which trusts prescribe it.

[helvella in reply to McPammy]

Mayne Pharma is an Australian company with an arm in the USA (by purchase of Paddock, through Perrigo and via Libertas). Mayne Pharma's own website claims their USA liothyronine is manufactured in the USA but, as you say, the actual product says it is made in Germany.

I suspect, but cannot be sure, that it is made by Peptido who also manufacture Greenstone Liothyronine and Pfizer Cytomel. Greenstone started as the generics arm of Pfizer but am not sure about current relationship between the companies.

[McPammy in reply to helvella]

Wow. Things you can learn on here. Thank you for all that information. I find it interesting. I use to work for Seqirus who manufacture the flu vaccine. They were originally owned by CSL in Australia. I was a supply chain manager there.

[shaws in reply to McPammy]

It is awful how many people have serious symptoms but they are ignored. In fact I doubt few medical professionals could name six symptoms never mind the myriad of those can occur in many people.

I also think people would be given anti-depressants instead of having FT4 and FT3 checked first of all as they most probably need to be prescribed T3.

[McPammy in reply to shaws]

I was offered antidepressants. I refused as I knew I was not depressed. I was lacking in strength and energy big time. The positive DIO2 gene test also proved a point. Thank god for thyroid U.K. and it’s administrators whom without I think I’d be dead.

[shaws in reply to McPammy]

Yes, I am very grateful to Thyroiduk without which I would not have recovered my health.

I hope you feel better quite soon.

[McPammy in reply to shaws]

Oh I’m flying now. Just back this morning from my quarterly B12 injection and 10 blood tests they now do on a regular basis due to the poor treatment I’d had for nearly 20 years. I now feel well cared for and many years younger. I hope you are feeling much better too.

[K1V1 in reply to shaws]

I feel the same as you have described, I had all the symptoms of Hypothyroid 35 years ago, but GP did not listen or did TSH, T4, T3 test. At that time trend among GP was to prescribe Antidepressants. I did feel better after taking antidepressants for short period of 6 months but then issue of tiredness, weight gain etc continued, until I broke down with episode of depression again.In 2005, I started to feel really worse & had burnout. Lost my job, almost on the verge of divorce but luckily it did not happen. I can go on but I have read similar fact of life many other have gone through on this forum. The truth of ignorant GP & other NHS departments are now revealed. We live in a hope the justice will come one day, & that is very near. Take Care & live the life, gift from GOD.

[helvella]

Liothyronine (and levothyroxine) have never been patented in the UK.

Even had they been patented, the term of a UK patent is usually twenty years. So would have expired long ago.

Both were introduced at least sixty five years ago.

[helvella]

So far as I have been able to tell, they were never patented in any country. But it isn't easy to be sure. And, most certainly, it would have been many years ago for any countries of significance.

In the UK, there was just one company for many years supplying liothyronine. (This was the inheritor of the Tertroxin product originally launched by Glaxo on 1956/06/23, eventually acquired by Goldshield.) And even as Advanz (and their forerunners) raised the price to about £250 other companies could easily have chosen to enter the market. But didn't. Until Morningside and Teva.

Why Sanofi, who have not just one but two liothyronine products (Thybon Henning in Germany and Sanofi Cynomel in France), didn't choose to launch in the UK is unclear. A few posts here suggest some people did contact Sanofi and ask if their products were available. We can speculate that the market was seen as too small to bother with, or darker reasons. (After all, Accord/Actavis have just been fined for offences including paying other companies not to enter the hydrocortisone market.) But unless someone decides to tell us, it will remain obscure.

[McPammy]

Loop holes in the NHS contracts and buyers just waiving the higher charges through without question. That’s the bit that need serious investigation. I think I might write to my local MP Justin Madders about it. I wrote to him about my case and Liothyronine in the past.

[penny]

I read this report and was pleased but not excited as there is no mention of anything changing vis a vis the price of T3. I don’t know if the fine is equal to the excess Advanz was charging over and above the norm. but doubt it and also doubt that the fine will be used to compensate those whose T3 was stopped because of price. When we were in the EU it was a mystery to me why surgeries/nhs could not purchase T3 from the EU where it was very cheap and readily available. My private doctor, sadly now retired, used to buy NDT to sell on to his clients.

[thyroidnodules]

Ive been on lio t3 for a year as a trial along with t4 but cause of covid i havent been back to endo. I go in 3 weeks time so hope she doesnt stop it . This is good news though