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Independents' Day

A ban on liothryonine will be devastating – I should know

Dr Renee Hoenderkamp

Ok. So I need to get something off my chest. It’s very personal to me so I have hesitated and procrastinated before doing this, but a real issue, so here goes!

So firstly, this was me (seven years ago) without T3 on Levothyroxine:

hoenderkamp pic

hoenderkamp pic









I stopped converting T4 to T3 after six years on Levothyroxine and turned from my profile picture to this in six weeks. I won’t bore you with how I was feeling but trust me: I couldn’t function as a GP. I couldn’t make a cup of tea!

Let’s not argue over whether or not the NHS should ration services and/or medication because like it or not, we already are. There is a postcode lottery going on all over the country on the supply or not of IVF, cataract surgery, varicose vein treatment and so on.

Liothyronine (T3), which for me is life sustaining, is already being rationed with some CCGs blacklisting it. I am fortunate in that my CCG currently allows it. Many others aren’t so lucky. So let’s argue over what, not whether.

There is currently an NHS consultation looking at ‘cheap or ineffective medications and those that can be obtained over the counter’ with a view to taking drugs off the formulary for us as GPs.

So the list… it’s an odd one. There are 14 items on it. Some seem no brainers: homeopathy, gluten free food, travel vaccines, omega 3 and fish oil, rubifacients and natural remedies for example. The rest is highly controversial and involves medication not available over the counter. T3 is one of these. I am terrified.

So why is T3 on the list? COST. Nothing else. Five years ago T3 was £19 per month. Since then Concordia, until very recently the sole UK supplier, has increased the price to the NHS to £280 per month. It is freely available across Europe at £20 per month. Why are we not challenging the price hikes of these medications rather than their use? Should that not at least be a question?

NHS England’s rationale is that ‘T3 is clinically effective’ (no kidding) ‘but there are cheaper alternatives available’. So this is rationing on cost alone, despite there being thousands of patients already safely and happily established on it. I am sure this is true for some of the other medications on the list. I certainly know from my experience that Levothyroxine is not a suitable alternative for me and for many people like me, some who have Dio2 gene faults. Without it I would not be able to function in society, let alone as a GP – surely the cost of that has to be taken into consideration.

And let’s not forget that this is a disease of women who are being adversely affected and will potentially be unable to be carers, mothers and workers.

The alternative is that patients buy it from other sources and therein lies a whole heap of danger. From where? What? Will it be real? And so on. Why should patients who have relied on an NHS prescription have to turn to these unregulated sources for their medication when there is not a suitable alternative.

I am happy to ask patients to buy paracetamol… which is not even on the list.

With many CCGs already having blacklisted T3 the postcode lottery is well established. And yet the thyroid guidelines (and they are just that) are about to be re-written, which will take 18 months – a long time to be close to Myxoedema coma… and that’s where I ended up. Interestingly the British Thyroid Association have reacted vigorously to NHS England, who quoted their guidelines in the consultation document, and have said that their guidelines should not be used to support the withdrawal of T3. They accept that some patients need it.

How can we take away medication that patients rely on, need and cannot access off script?

The courts recently overturned a decision by the NHS not to prescribe an alternative to the normal cheaper medication for a child with phenylketonuria. It costs £3,000 per month. The judge said that it ‘would be inhumane’ to deprive the child of this expensive drug. I feel a legal challenge coming on…

Dr Renee Hoenderkamp is a portfolio and Media GP in London

Concordia, which markets Liothyronine in the UK, has provided the following statement to Pulse:

‘The market for generic medicines in the UK is highly competitive: prices fluctuate significantly, but overall the UK generics industry provides over £13billion of annual savings to the NHS.

‘Concordia itself offers over £100million of savings each year through its medicines. Price increases are sometimes necessary, particularly in instances such as Liothyronine where there are numerous complexities surrounding its manufacture and regulatory approval. That said, the price of Liothyronine has not increased for more than 18 months. Concordia only increased the price of 3% of its UK medicines last year, with a far greater percentage seeing price reductions. The Department of Health is notified of all Concordia’s price changes and has never raised any concerns.

‘We believe that our 5 year investment project in Liothyronine has now resolved the technical manufacturing issues and, with two other manufacturers having also invested in launching this year, we expect future prices to reduce significantly.’

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Readers' comments (10)

  • I approached this article in a spirit of scepticism, with Liothyronine being one of those words like "Lyme disease" which sets alarm bells ringing in my head... but it's well argued, and to my surprise I also note that NICE currently endorses the use of liothyronine as an option for specialist initiation.!scenario

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  • David Banner

    The sensible solution would be to limit T3 initiation to secondary care. The minority of patients not responding clinically to T4 should all be referred to an endocrinologist for consideration of T3.
    However, the whole concept of a CCG "ban" is immoral. "Restriction" is fair enough (e.g. secondary care initiation only), but a postcode lottery ban is absurd and probably illegal.

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  • Cobblers

    What happened to Parallel Importing?

    Years ago some pharmacists imported meds from the EU as they were way cheaper than in UK. Bigger profit.

    Is there anything to stop that now? Only this time it might be the CCGs buying?

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  • Totally agree with David Banner. This is rare and specialist stuff and should at the very least be specialist initiation, however where appropriate it should remain available.

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  • Tom Caldwell

    A readable blog. However one with a few glaring problems.

    Firstly a (n=1) study to justify the view point. Whilst these can sound compelling they are poor science, let's face it they are not even science.

    Secondly I am certain the author could not function as a GP seven years ago as she wasn't a GP seven years ago... the GMC entry seems to indicate she gained registration seven years ago.

    Thirdly T3 is very far from normal management of hypothyroidism in U.K. medical practice. It is a drug which is associated with a markedly increased risk of AF and drug induced thyrotoxic states compared with T3 treatment. It's prescription and advices prescription has been the subject of several GMC cases for its use outside of suitable oversight by endocrinologists.

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  • The point about pricing is well made. Why does HM Gov not challenge monopoly manufacturers of generic medications who seek excessive profits when they have not incurred R and D costs? Spineless lickspittles to Big Pharma......

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  • We went through this process under instruction of the CCG. Our practice approached each individual patient reducing and stopping the T3. Where there were problems with their results or symptoms we then referred to endocrinology. I really despise this postcode medicine and think it puts unnecessary pressure on GPs especially when are financially penalised for not undertaking this sort of work and in other areas it doesn't seem to matter?

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  • Pezhman Fard

    Lovely lady, you are very brave and I congratulate you on your article which is very helpful. I hope all is well now and the issue is brought to the forum of discussion. Thank you for this article.

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  • I have retired now, but was a practicing GP for 36 years. I am in no doubt that some patients although biochemically euthyroid still experience hypothyroid symptoms, some devastatingly. The addition of Liothyronine transformed their lives for the better. Removing this drug from the formulary is as sensible as removing Insulin. Why can't those who make these decisions not listen to those in the trenches who really have the experience. The problem lies with the pricing and purchase, don't make it the patient's problem.

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  • Tom Caldwell. Thanks for the comments, I really appreciate the opportunity to discuss this issue. A little semantics... it doesn't say I wasn't able to function as a GP but that I couldn't. And I do know that would have been true, because I couldn't really move, think or act: I certainly couldn't have functioned as GP.

    Actually, without an endocrinologist adding T3 (a very small dose) to my T4 ( a larger dose) I would have not taken my finals. My case is an example of many and the photo speaks for itself. Of course I knew the topic would generate responses such as yours, hence the procrastination before posting. There are however plenty more cases, I can put you in touch them?

    There is also plenty of evidence to suggest that low T3 is damaging to the cardiovascular system. And as I am sure you would agree, any Thyroid hormone can cause AF in excess, this is not unique to T3.

    The BTA has actually stated very clearly that there are patients who do need T3. My work alongside Thyroid UK and other support groups has demonstrated this to be very evident.

    There is plenty of science around the use of T3 and it's benefits. The truth is that T4 is such a cheap drug that there is not much interest from pharma to study T3 more than they do. Even the NHS consultation states that T3 is clinically effective, it is just too expensive!

    Unfortunately UK Thyroid guidelines (currently being rewritten incidentally) are out-dated and lead clinicians to be blind to much suffering that goes on whilst bloods are within "guideline range". I can tell you, that if my TSH was in range I wouldn't be functioning. As I had cancer however it is desirably suppressed anyway – lucky me! In the US they have recently updated their tolerance for the upper range of TSH for everybody at 2.5. And yet in the U.K. We are happy to watch people get to 10 before we act even if T4 is at the very bottom of the range – this is wrong and cruel.

    Clinicians here do need to be more open minded and perhaps look at some of the studies, and they are there. Did you for example look at the work on the DIO2 gene fault that prevents conversion of T4 to T3? Perhaps instead of looking me up on the register, your time would have been more usefully spent looking at the science there most certainly is?

    So whilst I accept of course that n=1 is not science, science is exploring what is readily there and I feel as scientist we should at least look at the research which is there and be open to it rather than being closed and patients suffering as a result. I do accept that it will always likely be the minority of patients who need T3 added to T4 but with 1:50 women in the UK suffering from thyroid disease, even 10% is a lot of patients. And we all have patients on T4 who never feel well, despite being in range. If you need links to papers please let me know and I can provide them.

    To all other contributors: thank you, its reassuring to know that there are open minds not blinded by the TSH/T4 argument and who are prepared to look at the patient as an individual.

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