Dept of Health reply re. T3

I wrote to the Department of Health about the withdrawal of Liothyronine (T3).

Here is their reply. It seems my time and effort was totally wasted.

"Thank you for your correspondence of 27 April about liothyronine. I have been asked to reply.

Best practice on the identification and management of hypothyroidism has been provided in the Royal College of Physicians’ guidance The diagnosis and management of primary hypothyroidism. This document was developed on behalf of organisations such as the British Thyroid Association, British Thyroid Foundation and Society for Endocrinology, and is endorsed by the Royal College of General Practitioners.

The guidance states that overwhelming evidence supports the use of thyroxine T4 hormone replacement alone in the treatment of hypothyroidism. This is usually prescribed as levothyroxine tablets. The guidance does not recommend prescribing additional T3 hormone (liothyronine) in any presently available form. However, this does not prevent clinicians considering other forms of thyroid hormone replacement if appropriate.

More generally, decisions about what medicines to prescribe are made by the doctor or healthcare professional responsible for that part of the patient’s care. Prescribers are accountable for their prescribing decisions both professionally and to their service commissioners.

With regard to medicines prices, the Department is aware that there have been a number of increases in the prices of certain medicines, including thyroid medication. These include instances where a product previously marketed as a brand has been subsequently marketed as generic and an increase in price has been applied in view of the lack of a competitive market for that product.

Any concerns about possible anti-competitive behaviour by pharmaceutical companies should always be reported to the Competition and Markets Authority. The Authority was asked to look urgently at the evidence uncovered by The Times as part of its investigations into excessive drugs pricing.

There are systems in place to ensure that the NHS obtains the best value possible from the purchasing of medicines. There are voluntary and statutory schemes in place to consider the prices of branded and generic medicines rather than consider each product individually.

The Department also has legislative provisions to allow it to intervene with regard to the prices of medicines. However, any investigation would require a high-level and detailed knowledge of the company’s business to be able to make a judgement as to whether a particular price increase was justified.

However, due to the forthcoming election, the Department cannot comment further on this matter. The costs of medicines in the future will be a matter for the incoming Government.

You may therefore wish to share your concerns with the relevant political parties or write again to the Department after the election.

I am sorry I cannot be more helpful.

Yours sincerely,

Joanne Miles

Ministerial Correspondence and Public Enquiries

Department of Health

"

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22 Replies

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  • marigold22 No real surprise :(

    This is interesting

    "The guidance does not recommend prescribing additional T3 hormone (liothyronine) in any presently available form. However, this does not prevent clinicians considering other forms of thyroid hormone replacement if appropriate."

    I wonder what other "form" T3 comes apart from the "presently available form" ????

    Perhaps we should all go and ask for NDT then as clinicians aren't prevented from considering "other forms of thyroid hormone" :D

  • Maybe it is in the form of one we make in our kitchens - seeing we are doing everything else re 'thyroid' ourselves. :)

  • They are so disinterested and I dislike this sentence because the guidelines are made by people who don't have hypothyroidism (I should imagine) and if they did and weren't improving they'd soon be adding or taking T3 or NDT.

  • And they only talk about primary hypo.

    If there is a mechansim to make sure that the NHS isn't taken to the cleaners on prices, the people in that dept should be sacked as they aren't doing their job. If a particular compnay can't provide a compepwtitive price, you go elsewhere - the tax payer isn't in the business of propping up private companies - you don't need to know whether the increases are "justified" ("we need to pay our staff, especially directors, more" or "our raw materials are costing too much") or not, you just swap to a more efficient supplier. End of. Like switching your electric.

  • I don't think they give one iota how much T3 has risen is as it has given them the 'perfect' excuse as they did not like us asking for a trial of T3 and have always been very reluctant. Some doctors would prescribe if they cared abut their patient improving or trying to improve and it worked many times.

    They always quote the 'guidelines':

    The guidance states that overwhelming evidence supports the use of thyroxine T4 hormone replacement alone in the treatment of hypothyroidism.

    Have they ever done a survey of patients? Probably not. Also we do know that many do feel fine on levothyroxine but it leaves a lot of very unwell people who are given levo alone (my stomach turns over at that as my experience was absolutely dreadful on levo). Many must also take action by not taking levo as they are worse but doctors don't care.

    As we know some people cannot take a popular headache tablet so have to make sure they always avoid that one.

  • Exactly

  • DEFINITION OF GUIDELINES ...A guideline is a statement by which to determine a course of action. A guideline aims to streamline particular processes according to a set routine of sound practise. By definition, following a guideline is never mandatory. Guidelines are not binding and are not enforced.

    I wonder how that argument would go down.

    Jo xx

  • They'd still not take any notice as whoever went against them would be hounded as Dr Peatfield and Dr Skinner and most probably others as well, who thought the guidelines were wrong in the first place i.e. they prescribed alternative of NDT or T3.

    Now withdrawn T3 which is a lifeline for many. It isn't a 'fashion' as those at the top imagine but they must get a kick out of 'power' i.e.definition :-

    ability to control people and events

    and do not care that some medications return people to good health.

  • I guess there'll be quite a few of us receiving that or very similar soon.

    In ways I think it could have been worse. But the unfortunate part being no mention of an open consultation as there is with gluten free foods.

    We must get on the case to all the mps after the election and get ourselves heard

    Thanks for sharing marigold22

  • I am convinced that because of the price of liothyronine, NDT will suddenly be not so politically incorrect and may well find itself subject to some hurriedly put together studies in order to look towards a licence......maybe.....possibly!!!! We can but hope! Its the cheaper form of two evils in the eyes of the unmentionables.

  • Interesting point you make, Sticky. Revolutionary, but interesting :-)

  • I had the very same letter from them !! Away from home at present and could'nt write it out in full . Dont know how to photo and post.

    From memory I think it was a different name at end of script.

    Waste of time indeed !!😒😒

  • The system sucks!!!

  • Hello marigild22,,,,well what a lot of rhetoric,,,and long winded way of saying that no matter what if there is no insistence from DofH then doctors can stop prescribing and say it is government stopping them,,,whatever happens after 8 June,,would there be a change of decision,,,don't hold your breath and keep photo copies to send with your next letter,,,and the R Cof P are just taking the overview,,,maybe a proof that the T3 is needed for better quality of treatment,,,needs to be proved,,,,well hang on it and maybe be a highly supported petition,over 100,000 names could help,,,,ttfn from karen.

  • A speedy reply Scouser58 - yes, we need a Petition saying T3 DEFINITELY is needed by hypo patients to regain their health. x

  • This is the stock reply - I got it too...

  • UrsaP marigold22 Scouser58 ThyroidThora Gcart steviecat StickyBloodMentor Kitti1 angelofthenorth SeasideSusie

    :) :) :) re DIY

    I was surprised that the Chinese seem to be the first to fathom out what was causing Goitre etc. This is an excerpt from the following link:-

    Two of these prescriptions are from Old and New Tried and Tested Prescriptions (Gujin lu yanfang), attributed to Zhen Quan, written about 640 CE. Medical Secrets of an Official (Waitai Miyao)by Wang Tao, 752 CE,recommended steeping sheep’s thyroids in wine and afterwards roasting them to take one daily (Wong and Lien-The 1936). It seemed not to matter which animal was used, whether pigs, sheep, water buffalo or deer; all seem to have been judged effective. One seaweed prescription may have consisted of baking seaweed and sea grass to dryness, then grinding the mixture into a powder that was to be taken in warm water daily (Lu 2005).

    It seems improbable that these apparently routine therapeutic interventions of long ago were not the result of astute observation and experience. While their origin may have lain in serendipity or in some instinctive idea of treating like with like, a diseased thyroid with a healthy one – the Chinese thung lei (identity of categories) principle (Needham 1970) – their firm incorporation into Chinese pharmacopoeic texts is most likely to have been because they were seen to work. These texts included The Great Pharmacopoeia – the Pen-ts’ao kang mu or Bencao gangmu (Systematic compendium of materia medica) – by Li Shizhen, published in 1593 or 1596 (Barrett 2007; Temple 2007).It has not proved possible to consult directly any of the original Chinese writings mentioned, but several references to the use of thyroid (yè) and of seaweed (haizao) – or both together – in treating goitre (ying) have been located in modern edited editions (Gao Wenzhu 1993; Zhang Zuoji et al 1995; Xie Pangen 1996; Liu Hengru and Liu Shanyong 1998).

    jameslindlibrary.org/articl...

    Where is the 'today' "astute observation and experience" of Specialists?

  • Hi shaws , That is exactly what is missing today and worryingly for the future. Isn't there something about modern medicines being based on old herbal remedies too. And the truth in at least some old wives tales....

    Dr can't spare the time to look at the patient, never mind make 'links' like they used to....

  • Lets face it, this problem with Liothyronine and NDT has nothing to do with the DofH or the failure of GP's to treat patients or even the price of the medication although it certainly does not help. This is about a bunch of bullies who have scared to death the rest of the medical community by their actions of drumming out or warning off, anyone who dares go against their guidelines. Everyone is now so scared to death of prescribing these medications for fear they will lose their jobs, bring shame on their practise, or even lose their licence to practise medicine!

    Unless and until those people (who are acting like a mafia) are shamed into changing the way they are going about the above, nothing is likely to change. You can have study after study that may well prove what we already know, but they are unlikely or unwilling to admit they are wrong. Im not going to mention any names but after a conversation I had yesterday, it is clear that the hysteria amongst Dr's is based on pure fear, which far overrides any hippocratic oath.

    Exposing their methods of discrediting, in a massive way, I think personally, is the only way forward.

  • It's no better here in USA we have a T3 med made from pug thyroid I been asking for it for about 6 months just keep getting dosage adjustments for synthroid and no better

  • How do we identify the 'bunch of bullies' ?

  • So basically they are saying we don't think you need to take med for T3 that med for T4 will work?! Well NOT TRUE I have been on just T4 ( synthroid) for about a year and I still feel like crap no energy either insomnia or fatigued like never experienced I actually have narcolepsy induced by hypothyroid I have fallen asleep standing up why don't the dr care about us feeling like this just give me the freaking T3 med if it doesn't work ok but what if it does ?? If they had to go through every day feeling like this I get they would figure out a optimal treatment real quick

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