Letter from Joe FitzPatrick MSP, Minister for Health, Sport and Wellbeing

[lynmynott]

Great news! Jo FitzPatrick, Minister for Health, Sport and Wellbeing has sent a very clear letter out to various bodies emphasizing the Scottish Government's position that an endo can initiate treatment. Hopefully, this will help many Scottish patients - twitter.com/thyroiduk_org/s...

[MaisieGray]

I can't see what is great about it, to be honest:

1. T4 mono therapy should be considered first line in the treatment of primary hypothyroidism as it remains the safest and most effective treatment for most patients.

2. The use of combination T4 and T3 is a contentious issue and should only be initiated by an endocrinologist.

3. Combination therapy should be used on an individualised "trial" basis in compliant T4-treated hypothyroid patients who have persistent complaints despite reference range serum TSH values, provided they have received adequate chronic disease support and associated autoimmune diseases have been ruled out.

"Compliant" patients, really?; adequate chronic disease support - that would be a thing if it had ever existed; associated AI diseases ruled out - so if you are non-converting because of say, DIO2 issues, and also have diabetes or RA or whatever, you are excluded? I'm failing to see the great news and/or progress in this, it is no better than the England RMOC guidelines, which most certainly weren't heralded in, as great news. Any policy that explicitly prioritises T4 as a first line treatment rather than as simply one option of several, can't be good news; and and where it introduces T3 as contentious, the scene is well and truly set. I wonder why patients are being persuaded to consider this as great news when it's little more than a pacifier, and a pretty poor one at that, exactly as that deigned to be given to English patients.

[diogenes Remembering in reply to MaisieGray]

I'm afraid that, however you disagree, T4 therapy has to be a first-try treatment. Why? Because most patients are satisfied with it. A minority aren't. But you can't start out with any economic strategy by trying T3/T4 first. For the majority it's irrelevant and the protocol will cost a lot more. You start out completely ignorant about an individual patient. The odds are that T4 will work. So the rational approach is to start on that, but be keenly aware that it might not work for an individual. Then and only then begin a combination of T3 only or NDT. No organisation has an infinite pot of money. They have to work out optimum strategies - flexibility is the key, and this is the thing that is not now followed given adverse response to monotherapy. There s no magic route to therapeutic success. I think that given the straightjacket currently imposed, the Scots haven't done such a bad job.

[lavendergirl in reply to diogenes]

The problem is that such plan is flawed because it is motivated purely by an artificial issue of money, not patient care.

A packet of 30 x liothyronin cost only c. €5 in France. Why is it so expensive in Britain? Because only one company is licensed?

[Hashihouseman in reply to lavendergirl]

ironically the cost argument which they turn into a lack of evidence argument isn't the issue neither is claimed patient satisfaction the fact is that T4 only replacement ignores the lost thyroidal capacity for T3 and some people cope without it and some don't but physiologically the obvious answer is to replace both in ratios that mimic euthyroid ranges. Developing Replacement medication that is easy to titrate and is metabolized slowly to avoid peaks and troughs should be the priority for all concerned. Unphysiological bias in T4 T3 replacement ratios should be the exception.

[Hidden in reply to Hashihouseman]

Your right when I lived in France until recently I bought T3 for around 3.5 euros per box. There is a lot wrong with France but the health care systems is great.

A same or next day appointment with a GP which usually lasts around half an hour minimum, a thyroid scan for 36 euros done withing a few days. It's one of great sadness returning to the UK and the NHS.

[Hashihouseman in reply to Hidden]

In the UK it’s the Nevermind Health Service

[MaisieGray in reply to lavendergirl]

lavendergirl It's the drug which is licensed for use; and in the UK there are a number of licensed T3 products. See here bnf.nice.org.uk/medicinal-f...

[lavendergirl in reply to MaisieGray]

Ok, not 1 but several labs.

Just the same though because all pack of 28, whatever the dosage, are at £204.39 whatever the company producing it.

That doesn’t smell too good to me.

[MaisieGray in reply to lavendergirl]

No, that figure isn't the price the drugs are sold at; that is the Drug Tariff Price ie the standard amount at which the pharmacists are reimbursed at, by the NHS, irrespective of what wholesale price they have paid for it.

[MaisieGray in reply to diogenes]

diogenes I most definitely am not anti-monoT4, having been someone who for the first 30 yrs was very well on Levo until, coincidentally or otherwise, the menopause hit me. But to clarify, I wasn't implying that Drs should randomly prescribe any one of several therapeutic approaches as their fancy takes them, but that all exogenous thyroid hormones should have equal merit and relevance within a comprehensive treatment protocol, depending on the patient's circumstance and need. For example, I'm guessing that a patient admitted to ICU in severe myxoedemic crisis would not be started on a 25 mcg dose of L-thyroxine just in case that is sufficient; rather, I imagine they'd be treated with intravenous T3 if the patient's condition warranted it. So my point was about a change in attitude rather than necessarily in the practise of initial diagnosing and prescribing in the majority of cases, without which, and as I believe the letter reinforces, that smaller number of patients who are shown or appear to need more/other than T4 will continue to fight for good health. I had my own 20 mcg T3 summarily withdrawn in 2017 after 9 years of it benefiting me - incidentally at the same time as my T4 was reduced from 125 mcg to 75 mcg - and neither my GP nor the CCG cared a fig about how ill I was becoming and nor did they have regard for my Endo's request that my T3 be reinstated, despite the RMOC's guidelines that are similar to the above.

[Aurealis in reply to MaisieGray]

I agree MaisieGray the RMOC guidelines are fine for those not yet diagnosed, or going through diagnosis, Levo should be the first line treatment, and investigations should follow if this does not resolve symptoms. There are two areas of disatisfaction with the RMOC guidelines for me

Firstly, they are very long, repetitive in places and slightly contradictory in others. They provide just enough obscurity for CCG to claim to be following them while not really doing so. This leaves some of us outside the T3 party.

Secondly, the RMOC guidelines are not as helpful for people like me who were found in need of T3 many years ago and are dependant on it. I know there will be voices shouting, ‘Oh, but you’re an exception’. But in my CCG Liothyronine is designated Endo /Specialist prescription only. There is no way to appeal for a Specialist prescribed medication in my CCG as they are exempted from the exceptional case appeal process.

A change of endo is not appealing to me at this stage as it’s taken 27 years to find and obtain access to an endo that seems to understand my case and can help me achieve the high level of well being I am currently enjoying. Similarly unappealing is an endo informed trial with my finely and expensively balanced hormonal system achieved via numerous private endo appointments - private because the nhs let me down when I needed it most, yes I could have gone the A&E route, but I was too scared to do that, so obtained a private appointment within 48 hours after waiting three weeks for a referral letter and 19 years for general practitioners to accept that Levo was not appropriate for me. Like MaiseyGrey it was the start of the menopause that was the final crunch for Levo - I understand due to a change in carrier proteins at this time to which T4 binds.

I should say, I’m very grateful to Lyn Mynott for her work through the years for thyroid patients generally and for providing me with personal support and pointers on more than one occasion by email in the days before this site existed. For many years, Thyroid U.K. were the only group saying things about thyroid issues that made sense to me based on my personal experience, while The Thyroid Foundation just said the same as GPs who were not treating me satisfactorily. To have the RMOC guidance at all is a huge step forward, and thank you to all who participated.

Currently, the thing I object to most is non-medically qualified remote accountants and policy makers making decisions about my treatment, my livelihood, my life, my health and my future.

The CCG and NHS has to do better than this.

[DippyDame in reply to diogenes]

Agree.....I'm in Scotland

Quite an achievement following Lorraine Cleaver's 2012 petition. It may not be perfect but it's a start.

Dripping water will eventually wear through granite!

It all depends on whether or not endos know enough about the complexities of thyroid diagnoses and treatments to make an informed and accurate judgement about clinical need. Based on posts here that is often not the case! If they get it wrong (and they hold the sway) cost or not, patients will continue to suffer.

It is to be hoped that the next generation who come out of med school will have been taught more extensively about the subject. Education (or lack of it) appears to be a major part of the problem. Money being the other...

It"s an old arguement, but given that T3 can be sourced at a sensible cost elsewhere is it really beyond the powers- that- be to address this, because until they pull their heads out of the sand or their snouts out of the trough this contention will remain and - as above - patients will continue to suffer.

However this decision may help to generate a few cracks in the existing mould and everyone involved in this debate deserves much thanks for their tenacity in working towards that goal.

[Hyburn in reply to MaisieGray]

I attended the most recent debate in the Scottish Parliament where the minister agreed to send this letter to Health Boards and it gave me great hope of real progress. I must say, like MaisieGray, I was disappointed with the content. This still leaves plenty of wiggle room for endos not to prescribe T3 if they don't want to. Like my NHS endo who refused to look at my DIO2 genetic test that confirmed I have issues converting T4 to T3, nor would she look at my private blood tests, yet she wouldn't do FT3 (even though, at that time, I was on T3 only) or thyroid antibodies. She also told me she would not prescribe T3 or increase my dose but, because I had been put on T3 by Dr Toft when he was my NHS endo, she would not interfere with it. That is what we are up against and why this letter is not clear or robust enough.

[MaisieGray in reply to Hyburn]

Hyburn I 'm glad you were there, I watched the debate on line. You've encapsulated my concerns exactly. When I informed my GP that my own DIO2 test indicated an increased likelihood of poor T4:T3 conversion, insulin-resistance and obesity and that was surely reason to reinstate my T3 (I'd increased from a size 12 to a size 22 in exactly 12 months) it was as if I was talking in tongues. There's no joined up thinking about the economics of poor patient health even, nor evidence of Drs going the first mile for patients, never mind an extra one; and neither this letter nor the RMOC guidelines provides sufficient impetus nor obligation on any of the medical decision-makers involved in our health, to give us any sense of security about this.

[JMo1]

Thanks Lyn! Following the successful Ombudsman decision, I am awaiting the first NHS Endo appt for my daughter. I have been worried that they could easily refuse to prescribe the T3 initiated by the private endocrinologist despite the very positive improvement in her mental and physical health. I think this letter will really help as she has been through the whole clinical assessment over the years (colonoscopy, endoscopy, patch testing ultrasound, CBT all of which were inconclusive). It is unfortunate that this expensive, unnecessary, invasive process may still be initiated for those needing T3 but at least now we have strong guidance to say the T3 should be prescribed when needed. I am much more hopeful for the endo appt now so Thank for sharing! Jx

[Aurealis]

Well hopefully Lyn it will be helpful - but those of us that have had our T3 stopped, or been threatened with it being stopped, or constantly live in fear of T3 being stopped, are so suspicious now of every document that comes out in fear that every possible loophole will be exploited to prevent those who need T3 from getting it. This is the reality of dealing with CCG in England today.

This T3 nightmare threatens our existence, our lifestyle, livelihood and worst still our hopes for the future. When we read phrases like ‘provided they have received chronic disease support and associated AI diseases ruled out’ there is a collective heart sink - because the experiences we share are things like 20 years of being challenged about wanting a dose increase, blame for needing more medication than the gp wanted to prescribe, blame for having the wrong test results such as suppressed TSH, resisting constant and repeated pushing of anti- depressants, accusations that we only feel unwell because we’re just recovering from a pregnancy/ have young children/ are working as well as bringing up a family/ have empty nest syndrome/ are approaching menopause/ have elderly parent responsibilities/ in menopause/ getting older - in other words, we’re female!!!

Those of us that have battled all of this and eventually been prescribed T3, sometimes only at the last hour - as our bodies and minds were ceasing to function and our lives imploding - we are very sensitive to any suggestion that there are yet more hoops to jump through to keep T3. We’ve had enough... we can’t take any more... and we need more support from government, from nhs, from doctors, from CCG, from everyone.

[MaisieGray in reply to Aurealis]

Well said. My thoughts and feeling exactly Aurealis .

I feel quite angry in fact, that this letter was heralded as great news when it seems little more than a sop. It's more or less the parallel of the RMOC guidelines in England and the only thing that seems to have come out of those, is that Endos are actually now refusing to see GP-referred patients, which I've never heard happen, and certainly not on this scale, before this debacle.

[mfinn in reply to Aurealis]

And especially Professor V K Chatterjee, President of the British Thyroid Association.