Thyroid UK
88,810 members103,410 posts

Letter from MP re liothyronine consultation & my response

Only for folk who have the time.... no new info. Reply from MP (wrote to ask support in not removing liothyronine) :

'Thank you for contacting me about hypothyroidism.

I understand that hypothyroidism describes the effects of an underactive thyroid gland, where not enough hormones are produced to keep the body functioning properly. I recognise that it is a lifelong condition which causes debilitating symptoms and it can be difficult to diagnose.

I agree that early diagnosis is key. I know that the Royal College of Physicians has published guidance regarding the diagnosis and treatment of hypothyroidism.

As you may know, this guidance states that overwhelming evidence supports the use of thyroxine T4 hormone replacement alone in the treatment of hypothyroidism. The guidance does not recommend prescribing additional T3 hormone in any presently available form, including Natural Desiccated Thyroid (NDT) treatments. I believe that this is because it has not been definitively proven to be of any benefit to patients.

NHS England announced in July 2017 that it will consider removing the T3 hormone - Liothyronine - from its list of regularly prescribed drugs, owing to the high cost of procuring this medicine, and the proven effectiveness of the T4 hormone as an alternative treatment, as noted by the British Thyroid Association in 2015. The prescription of Liothyronine will still be available in exceptional circumstances where there is a clinical need, on the recommendation of a multidisciplinary team.

I would like to stress that no final decision has been taken so far. However, clinicians are not prevented from considering other forms of thyroid hormone replacement, if appropriate. To clarify, NDT treatments remain unlicensed as its effectiveness is yet unproven. GPs may prescribe it on a named-patient basis and prescribing decisions are rightly a matter for the doctor in consultation with their patient.

I know that the Government is aware that this may produce some inconsistency in treatment. However, NHS England has produced its own plan for complex endocrinology to ensure that patients receive appropriate care and support. This has been developed in consultation with doctors, commissioners and patients.

Thank you again for taking the time to contact me.'

My response:

'1) I did not mention 'early diagnosis'.

2) the guidelines you quote were written in 2008, revised 2011. Even these are overturned by the British Thyroid Association guidelines of December 2016 (not mentioned in the consultation) which state 'do not take a patient currently benefiting from liothyronine (T3) treatment off that treatment'. This however deprives the estimated 10-15% of patients who are intolerant of levothyroxine (T4) the future chance to recover fully using T3. These patients tend to be diagnosed with 'chronic fatigue' or 'fibromyalgia' and are a burden on the health system and society through no fault of their own. The consultation should be censured for cherry picking official advice that serves its ends rather than representing the true position. It should also be censured for using the term 'deprescribing' in a general consultation. This term is not in general use and obfuscates the question asked:

'Advise CCGs to support prescribers in deprescribing Liothyronine in all patients and, where appropriate, ensure the availability of relevant services to facilitate this change.'

Agree,Neither agree or disagree,Disagree,Unsure

3) I'm afraid the Royal College of Physicians Guidance 'not been definitively proven to be of any benefit' is meaningless compared to my 'n='1 experiment where I have experienced miraculous health improvement on liothyronine. I only stopped taking levothyroxine because I realised I was following the same health path as my mother who died when she was 56 from (with hindsight) levothyroxine poisoning. I felt better after giving up levothyroxine approaching a myxoedema coma than whilst on the drug. I had no knowledge of liothyronine before this point when it was prescribed for me by an endocrinologist.

4) I don't think 10-15% of the population should be considered to be 'exceptional circumstances'.

I don't think I am in need of 'complex endocrinology' services. I am in need of T3. I have one blood test a year with a 5 minute endocrinologist catch up (sadly this has to be at a hospital as CCGs prohibit GPs even testing for T3).

The NHS should work on procurement which protects them from rip off medicine prices rather than depriving people who suffer from hypothyroidism a useful life and generating further costs by ensuring that those patients remain sick.'

8 Replies
oldestnewest

Love your response!

2 likes
Reply

Your MP's response is not really unexpected :( shame he can't support his constituents. I bet he didn't even look into it himself, I reckon he delegated that task to an assistant and they just came up with some old stuff.

Excellent response from you loueldhen I hope you it peaks your MP's interest enough to look into it further (and personally).

3 likes
Reply

Loueldhen,

Usual cut & paste response from Dept of Health to your MP. Your response is marvellous!

4 likes
Reply

Brilliant response - MP's talk of recommendation of a multi-disciplinary team and plan for complex endocrinology is nonsense - both involving costs in themselves.

1 like
Reply

Great reply

1 like
Reply

The MP's response is typical of people who have no experience neither understanding of the problem, in fact similar attitude from GPs and some endos!

Your response is to the point and I hope your MP will now look into the matter properly in addresing it. Please keep us posted.

1 like
Reply

Excellent response. I look forward to the MP's reply.

1 like
Reply

'NDT treatments remain unlicensed as its effectiveness is yet unproven...' Just what does he think was available to hypothyroid patients in the days before the precious Levothyroxine??? I would argue that the effectiveness of T4 has not been proven, certainly not in my case which is why I was put on T3 in the first place by my (sadly now retired) endo! That made a huge difference to my wellbeing, although I'm still not back to my 'old' self. I would love to be able to try NDT and don't think it should be unlicensed. In fact, there have been articles (I believe, by the late Dr John Lowe) that conducted a comparison between the consistency and effectiveness of NDT versus T4 and T3 and found that NDT came out on top every time!

Just as no article of clothing will fit all, no one type of treatment will be good for all and I would be more inclined to take a long, hard look at Levothyroxine than Liothyronine or NDT!

1 like
Reply

You may also like...