The new NICE Guidance on Thyroid Disease has now been published. this is the email Thyroid UK received this morning:
RE: NICE guideline on thyroid disease: assessment and management
This final guideline has now been published on the NICE website.
Thyroid UK is extremely unhappy about the section on liothyronine and NDT:
1.3.4 Do not routinely offer liothyronine for primary hypothyroidism, either alone or in combination with levothyroxine, because there is not enough evidence that it offers benefits over levothyroxine monotherapy, and its long-term adverse effects are uncertain.
1.3.5 Do not offer natural thyroid extract for primary hypothyroidism[1] because there is not enough evidence that it offers benefits over levothyroxine, and its long-term adverse effects are uncertain.
We were informed that we could make comments after the final draft but only if they were "factual errors".
I sent an email saying how extremely disappointed we were and that this is not going to help thyroid patients at all. It seems as if the voice of patients and patient groups have been discounted and that doctors who want to prescribe liothyronine will now be confused as to which guidance they should be using and more CCGs will be withdrawing liothyronine from patients who need it.
I said that it would be helpful if Section 1.3.4 could be changed to similar wording on the RMOC guidance of July 2019:
Hypothyroidism ● Levothyroxine + liothyronine combination therapy for new patients: See section 3.1.2 / 3.1.4
In rare situations where patients experience continuing symptoms whilst on levothyroxine (that have a material impact upon normal day to day function), and other potential causes have been investigated and eliminated, a 3 month trial with additional liothyronine may be appropriate. This is only to be initiated by a consultant NHS endocrinologist. Following this trial the consultant NHS endocrinologist will advise on the need for ongoing liothyronine. Many endocrinologists may not agree that a trial of levothyroxine / liothyronine combination therapy is warranted in these circumstances and their clinical judgement is valid given the current understanding of the science and evidence of the treatments
I received a response this morning stating that as my comments were not "factual errors" they could not be taken into account.
Thyroid UK will continue to fight for the right for patients to have liothyronine prescribed, should they need it.
They only take Randomised Controlled Trials into account and when there aren't any, they take the experience on the clinicians on the panel. How is that a fair judgement when there is such controversy over treating with liothyronine. Some doctors feel patients should be treated but their thoughts were completely ignored.
What about when you have the faulty gene Dl01? Are they saying that people can live without T3? I can’t convert T4 to T3 properly 😢 so basically their saying tough! 😡
They seem to be using the term 'long-term adverse effects are uncertain' as a tool to avoid any scientific debate. We are getting a lot of political news at the moment but I trust the politicians more than I trust endocrinologists. They have a strategy of 'listening' to make you feel good but no intention whatsoever of changing their strategy or accepting evidence.
VERY IMPORTANT. Section 1.3 only addresses Primary Hypothyroidism, the guidance does not apply to any other form of hypothyroidism.
Section 1.3.4 needs clarification. What does 'routinely' mean? To offer levothyroxine initially and liothyronine if levo doesn't work is fair enough. They must clarify 'routinely'. Also, I haven't read the document yet but I didn't see any reference to liothyronine having to be prescribed by an NHS endocrinologist. I think interpretation of these guidelines will be more important than the content.
Let's keep people under or incorrectly medicated so other symptoms persist that can be treated with a pill. Follow the money and check how many members of NICE are on the payrolls of pharmaceutical companies. The last info I read was that it was over 80%.
Anyway after being on T3 for over 6 years I was told yesterday - at my first UK appointment - that it was fine to source and treat myself ... ?
Sadly there must be millions of women on T4 who accept the below par situation - always blaming something else and of course GP's often/always say - it cannot be your T4/Levo.
Why do Docs train for years only to be beaten into submission by inappropriate guidelines. I despair and fear the bleak future for so many ...
I think it should not be permitted to be on the payroll of pharmaceutical companies as it, surely, must affect the ability to prescribe what suits the patient and enables symptoms to be resolved.
Pharmaceutical companies are more powerful than government as illustrated by the T3 debacle. What have the government done ? Still cost was mentioned in the NICE guidelines - had the government done its job then NICE could not detail it as an excuse. So we do have to ask who is behind all this - too many snouts in the trough for my liking ...
@Lynmynott - I haven't had the time to read this new document yet, but has anyone done a direct compare and highlight changes from the previous guidance? That's often useful.
Do bear in mind, this are the very first formal NICE guidance on hypothyroidism and hyperthyroidism. Until now, there have only been Clinical Knowledge Summaries which were not developed according to NICE guideline rules and did not have the status of NICE recommendations.
It is reasonable to ask for comparison against the CKS but it is not like version 1 to version 2 where we could expect a clear, point by point, correlation.
Why oh why when the NHS is capable of wonderful life changing and life saving treatments - sometimes involving eye watering amounts of money- do we thyroid patients have to fight for help. Over and over again!
Some of us, through desperation give up and self medicate in order to improve our health.
For many reasons this is not the answer for everyone. Why should it be! It is rediculous!
Why should we have to trawl the globe to find, possibly unreliable, sources of the medication denied us by the very people charged to "first do no harm". It strikes me they have forgotten those words....and their meaning.
If we the patients can do the research and join up the dots what is wrong with the medical profession. Why do they appear deaf and blind to the facts and determined to adhere to protocols that keep patients unwell?
T3 is a potent medication, are they actually afraid to take responsibility for it's use. Surely not....medical care is awash with powerful drugs!
As someone with RTH who needs a very large dose of T3 I - and others in a similar position - have scant hope of having such quantities prescribed.
Patients requiring much smaller doses appear, increasingly, to fare no better.
Meantime the NHS might spend thousands on scans, scopes and medications that might, at best, keep those patients ticking over....not good enough!
Do they really think that the over 100,00 patients who turn to Thyroid UK for help are all suffering from that horribly named condition, "Health Anxiety".
Ah! But most of us are women and consequently given to hysteria! Humbug!
Other than concluding that this is not a medical debate but rather a battle against ignorance, high handedness, political will and financial clout.......I remain dumbstruck by their intransigence.
Don't apologise for ranting, DD...it's an outrage!😡 And I'm afraid the likes of you and I, requiring large doses of T3 just to be able to walk about and have a smidgeon of normality in our lives, don't stand a chance in hell of EVER being treated by the NHS...I've come to accept that now (they'll never get their head around THR 😂), but some people just need a bit of T3 added to T4, and to deprive them of that is criminal, in my mind. The beneficial 'evidence' is all over this forum for T3 and NDT, but those in power aren't looking or listening. It's a tragic state of affairs...😢 x
Agree totally. Like you I've come to accept my lot....maybe not so many of us with RtH, but there appears to be huge numbers battling on without the few micrograms of T3 that could change their lives.
What do those people have for both brains and a conscience.....it beggars belief!
I totally agree with your ‘rant’, DD. I am astounded that so many in the medical profession are dominated by outdated scientific information and/or by pressure to conform to it without challenge.
Tania Smith (Canadian Thyroid Campaign) sent me the under scribed:
Power will always defend its own power on the grounds that it currently has power.
Where is the procedure for holding a therapeutic monopoly to account for the original basis of its own right to monopolize?
There is no procedure other than open public debate and denouncement ...
And we must do more research that documents the failure of enforced "lowered-FT3 Levothyroxine monotherapy" to resolve hypothyroidism in a significant percentage of patients, and we must document its adverse health effects.
Where is their evidence for their favorite therapy being superior to all others?
Their historical programme of institutionalized ignorance is the grounds for their forbidding such ignorance from ever being removed in the future.
"We have continually failed to inquire into the superiority of our recommendations for 40 years, and so we must outlaw the means of such inquiry in the future."
This is also easily said of Levothyroxine monotherapy guidelines themselves:
"because there is not enough evidence that it offers benefits over [any other form of therapy], and [Levothyroxine monotherapy's] long-term adverse effects are uncertain."
In the 1980s and 1990s,
What evidence originally gave advocates of Levothyroxine monotherapy the right to say it is superior to any other therapy in preventing the long term adverse health effects of hypothyroidism?
Show us your rigorous comparative pharmaceutical trials.
There has been NO comparative longitudinal study of long term health effects of Levothyroxine monotherapy titrated by normal TSH alone, versus the prior gold standard therapy, desiccated thyroid, titrated by multiple indices of euthyroid status.
Ever since studies of nonthyroidal illness began,
Nobody has done large studies of thyroidless people going through acute nonthyroidal illness or chronic diseases on Levothyroxine monotherapy compared to people with healthy thyroids and people on desiccated thyroid therapy.
Historically they have failed to do such studies, and their guidelines have forbid such a trial from ever being done.
Ever since TSH normalization has been instituted as sole sufficient proof of euthyroid status in therapy,
Nobody has done large studies of the health effects of patients who are doomed to dose Levothyroxine monotherapy that induces in them a low Free T3/T4 ratio alongside Free T3 concentration in the lower half of reference range and lower.
Historically they failed to do such studies, and their monitoring policy has failed to institute long term monitoring of Free T3 and Free T4.
Nobody has ever recorded "unresolved hypothyroidism on Levothyroxine therapy" as a condition of adverse effects such as illness or death because it has been blindly assumed that a normalized TSH alone is sufficient proof of resolved hypothyroidism in therapy.
They have ensured that no reports of therapy failure could ever have been reported, and will ensure that genuine therapy failure shall continue to fail to be recognized as such.
Again, there is no procedure that can bring down such a monopoly power other than open public debate and research into therapy failure.
It would make one cry with disappointment of the statements made by those who we'd expect to KNOW ALL but who know actually nothing about those who find levothyroxine. poisonous
Taking strict logic, the NICE guidelines insist that combination trials are all of low quality and conclusions cannot therefore be drawn, BUT there have never been any formal trials on T4 only. Therefore by their logic, thyroid sufferers have no proven (by their standards) viable treatment at all. And to say that time has proved efficacy - that is partly true but only for those who can take it and regain health. So time has proved what a formal trial would also have shown: that for most people the medicine works, but not for a minority.
Thank you for your continued and tireless efforts in attempting to improve the medical care and treatment for all thyroid patients.
Having just had a quick read, I can't in all honesty see any difference with regard to my personal issues with the treatment and care of Graves Disease patients.
I'll read it again, and try not to get angry, hoping to find something that justifies the costs involved in producing such a whitewash.
What the blazes are these doctors talking about. They are obviously determined - like they did with the instant withdrawal o f NDT (saved many lives) and T3 as well, -with untruthful comments.
If they don't have hypothyroidism, they cannot make comments about what relieves patients clinical symptoms, neither have they bothered to read the 'Final Testament'-of another's suicide of which she wrote to the coroner to explain why she could no longer cope with the unrelieved symptoms. Who cares? not the professionals but it all lands upon family members and friends who are bereft.
Some people who don't have hypo, might feel very unwell taking a paracetamol tablet so they certainly wouldn't be in favour of continuing and would try to find a pain relief tablet that suits.
We aren't idots. The professionals seem to be as they DO NOT LISTEN and turn DEAF EARS when we complain that we need either NDT or T3 or T4/T3 to have a pain-free healthy life.
They even ignored Dr John Lowe's Rebuttal to the BTA et al about the False Statement they made in order to withdraw NDT.
I think it's time we had a 'sit in at Parliament'! Do we have to actually take action like the Suffregetes did in order to get to vote. Patients, surely should have an input into their treatment, especially when they are aware that on a particular one their symptoms are not relieved but on another they are relieved. Some people just cannot afford to buy their own hormones, and why should they. They have an autoimmune disease which should be treated with care and kindness.
Maybe we all have to move to Scotland to get treated as we wish - even a trial of NDT or T3 or T3/T4. They are not 'fit to be experts' in the diagnosing/treatment of those of us who have conditions which can be relieved and that may necessitate trials of different thyroid hormones. One size doesn't fit all.
They are not the 'experts' - we are when it comes to our own physical health.
Those patients who are well and would never think of looking on the internet wont be on this forum. Neither would 'other help/advice forums' i.e. STTM, TUK, Thyroid Advocacy, Hormone Restoration, and others who care about relieving clinical symptoms.
We are not idots, we are on this forum to get support from others who're under the same umbrella. It's about time the rain stopped and we were freed from nonsensical rules/regulations made by mainly men for mainly women. We've enough to contend with without worrying about how to get good health returned but come up against a brick wall made by others who have no soul about relieving suffering. Some have unbearable symptoms but will be given 'additional' prescriptions instead of optimum hormones.
We need more Dr Skinners and Dr Peatfield. We need Endocrinologists and doctors not be made to appear before the GMC due to 'treating' patients. as they'd like to do.
I'm in Scotland shaws and while in theory anyone who has a clinical need for T3 should be able to have it prescribed - the Health Minister wrote to every Health Board stating this - in reality getting endocrinologists to agree to a clinical need remains the challenge
As you know I have both the Dio2 snp and THR and currently take a single daily dose of 137.5mcg T3 which I have to buy. ...and frankly I feel equally very fortunate that I can and livid that I/we have to.
I briefly saw an endo who refused to agree that I have THR but could not, when pressed, explain why that dose did not send me into orbit! He did waffle about a comparison with getting into a car.....mostly you might arrive safely but you might also come to grief (I paraphrase here, to be brief)
He rather condescendingly accepted that since it seemed to be working I should maintain the status quo....BUT, added it would not be his advice. Why we ask ourselves!
Levothyroxine that made me ill in the first place was that advice!
I didn't darken his door again!
I guess that those medics you mention proved the naysayers wrong ...but hell will freeze over before they admit that and move to do something about poor diagnoses, wrong medication and the eye watering cost of what is a life changing (saving, even) medication.
I wish I had known 50 years ago, what I have now come to understand in my 70s ... my lovely family would have had a wife and mother who didn't drag herself through life saying, "I'm fine", until I could barely function
I know I'm not alone....this must not be the fate of another generation.
Yes, it's like the children with severe epilepsy, that the government assured would be allowed to have the cannabis oil that the parents had sourced themselves, and that had helped them so much...I gather they're still waiting😕
Hear hear shaws! Maybe we should organise a march to Scotland! As long as I have plenty of packets of Tiromel, I'll be up for it!😂 Civil disobedience may be the only way forward...
Move to Scotland to get treated as we wish! Are you having a laugh? My Endocrinoligist will not even see me and that is after my GP 's request. We had a petition running in the Scottish Parliament for seven, yes, seven years for better thyroid and adrenal treatment. Our government and I mean Scottish Government (with the exception of one MSP) has done NOTHING to help Thyroid sufferers up here. I am sick to death of everyone believing that Scotland has some kind of miracle NHS service, no we don't. The problems you have in other parts of the UK are exactly the same as we have in Scotland , if not worse at times. Where are people getting the impression that healthcare is so much better in Scotland? I can assure you it is not. You have as much chance of getting Liothyronine in Scotland as you have of flying to the moon!Even for me to get the crap Levothyroxine, I suffered for years before obtaining it and not much good it's done. I was told everything from it was menopause to depression, it's all in your mind. My GP is extremely sympathetic but their hands are tied. My Endocrinoligist has told me Levothyroxine is the treatment, end off. I live in Scotland and I can tell you it is a postcode lottery. Some folk get Liothyronine and other's don't. I also know people up here who have had to go to private doctors to get it and they pay a fortune. All in Scotland.
Only my opinion, but I think it would need a Class Action to be raised against NICE but that would take time, knowledge and expertise none of which I have. I would not know where to begin. I seriously believe they hope we all die, you don't need to treat dead people. This illness takes alot of time , various tests and money. All things the government and the NHS do not have (or say they don't). This is purely a money saving exercise. Nobody cares about us.
I am involved in what most people would refer to as a Class Action against another part of the UK government. It's dragged on for 11 years already and my suspicion is that it will drag on for a minimum of 2 more, but possibly longer. It costs a lot of money (hundreds, possibly more than a thousand, people have each paid several thousand pounds towards the costs already). It also takes a serious amount of time from a dedicated, core group. I take my hat off to that group - without their sacrifices, the government would just walk all over the victims (some people have reportedly committed suicide because of the government's actions). In the case of T3/NDT, I'd back action against NICE, the NHS, and the Department of Health and Social Care. However, at this point my funds are depleted, and from reading forum threads there are clearly many people here in the same (or worse) financial situation. Whether enough funds could be gathered to take and maintain any legal action is a big question. But also, whether there are amongst us a group of people with the time and skills to manage the action is just as big a question. It's a big commitment.
Jumpjiving, thank you for your post, it did confirm what I kind of expected. I think it was just a dream. I do not have the knowledge, the time or the never ending funds to do this. I'm at a loss and to be honest have given up and I've written to many in the Scottish Parliament. I did not even get a reply from my local MP who is useless. My MSP gave me an acknowledgement but not much else. They don't care, lets face it and no one else cares unless you are affected by a thyroid condition. I have to confess I do get annoyed by the perception that Scotland's healthcare is soo much better, I can tell you we have the same issues and difficulties here than in any other part of the UK. Scottish healthcare is far from perfect.
With the General Election campaign going on, I wonder if there's an opportunity to be had. The main TV stuff (I cannot bring myself to call them debates) seem to be out of the way now (unless there are more that I don't know about), but if Boris Johnson, Nicola Sturgeon etc are going to be in front of cameras again, or even on the radio, where the public can put questions to them, I wonder if somebody could get themselves onto the list of questioners and ask a well-designed question about the paradox of NICE not allowing long-used drugs to be prescribed because there haven't been suitable trials, but the government not actioning those trials despite thousands of people needing the drugs. If somebody could do it, we could have a think about the precise wording so that the chance of the politicians slipping the trap is reduced.
I'm sorry to hear that Scotland is no further forward, despite all the seemingly meaningless talks in Parliament. I have heard this before on here... clearly the grass is not greener😕 I agree that some serious action needs to be taken about this ~ people's lives are at stake, and it's gone on for way too long.
Mamapeal, that is the trouble it's ALL talking and sympathetic noises that we have heard for years. We definitely don't need more talk, I've had way enough of that. The devastating thing was the Petition gave us a slight glimmer of hope, only for it all to fail. I have no criticism of the people who raised the Petition, I will be eternally grateful that they tried to get something done. The difficulty we have are the closed minds of the medical profession.
Yes, I'm also very grateful for all those who try so hard to fight for our rights to suitable treatment, not having it has ruined my life, and I fear for my daughters should they become hypo, but it does seem we're up against huge brick walls with the powerful corporations behind this malpractice.
I think perhaps publicity surrounding this needs to go up a notch, and even though I found this great forum via a TV programme highlighting the T3 debacle, and there have been many others, it seems nothing has really changed.
I also realise that we may seem a pathetic little bunch with our lethargy and brain fog, etc. but we are many, and there are others out there, who don't even realise that they have a need for T3...a quick glance through other forums highlights this sad state of affairs. Bringing T3 (and NDT) back into regular prescribing procedure would benefit so many, and the evidence is out there in all who use it. It's a massive human rights issue, and like the poor mothers still fighting for the cbd oil, we have to keep it in the public eye and the media...somehow. x
Unfortunately this was all entirely predictable and nobody should be surprised at the outcome I'm afraid. There was a stakeholder 'scoping session' that took place over just one day right at the start of the process and I attended that. We did our best to get the patient view over but after that there was, as far as I can see, no further patient consultation of any real significance.
When the draft paper was made available for comment I could see by searching the references section that the most recent research carried out by Thyroid UK's advisors, methodically building the case for a new paradigm in thyroidology and scientifically proving that there is absolutely no justification for continuing the exclusive use of TSH alone for diagnosis and dose titration, had been totally ignored. We are talking here about some 32 papers published over a decade - that is an awful lot of research to totally ignore!
When comments were submitted there was no way of knowing if they had been taken on board or not and in all probability they weren't. Dr Barry Peatfield has always maintained that" the ignorance of (most) endocrinologists is exceeded only by their arrogance", and it looks as if nothing has changed there.
It should be borne in mind that the NICE advice does also take into account the costs of treatment and with the cost of T3 being so excessively high in the UK at the moment, that was bound to have a huge impact on what passes for their 'thinking'.
But it is also most frustrating that they keep stating that no trials have ever demonstrated the benefits of combination T3 +T4 treatment over T4 only treatment, when we know that none of those trials were correctly designed to show that benefit in the minority of patients who really do need it. We do need to get properly designed trials done but that won't happen overnight.
Anybody who wants to fight this would do well to start by getting familiar with the those 32 papers published by Rudolf Hoermann and his co-workers.
There is a 17 year study that showed no atrial fibrillation, cardiovascular disease or fractures but some use of antipsychotic medication which was a bit strange. ncbi.nlm.nih.gov/pubmed/269...
I’ve been on T3 only for over 20 years and no problems.
I wonder about the link to psychosis - it would be interesting to know if there was a link to dosage ie not on enough. My mental wellbeing suffers if my meds are messed with.
We will be fighting for NDT too but our focus has been on liothyronine first - kind of like a precendent that they use in court - once one thing is achieved, something similar could be achieved too. My own NDT and T3 was taken away in 2017 so I want to fight for it too but we must be tactical in our fight.
Thank you Lynn and all the TUK team . Without you holding the frontline of this battle I would been utterly lost I believe. Trying to manage this complex condition of Hashimotos plus conversion problems has been hard enough without the constantly present strain of
hostility from GPs and Endocrinologists.
Could it be time for Woman's Hour to do one of their special investigations, with the slant of it being predominantly a women's disease?
Once the election is over I think we will be planning what to do next and contacting the media and writing some documentation that will help people fight for their T3 will be our first priorities.
1.3.5 Do not offer natural thyroid extract for primary hypothyroidism[1] because there is not enough evidence that it offers benefits over levothyroxine, and its long-term adverse effects are uncertain.
What a load of bilge - if it wasn't for NDT from 1890's, people who were hypothyroid died - is that not enough evidence for these arrogant knowalls
Thanks for all your hard work trying to change things Lyn. This latest document specifies that it is guidance for treating primary hypothyroidism only. So is there some other guidance for treating secondary hypothyroidism somewhere? Why couldn't any doctor who was previously prescribing Liothyronine continue to treat with it on the basis that the patient has secondary hypothyroidism? Albeit the document seems to assume that secondary hypothyroidism is only ever pituitary disease!
Good grief! This is another smack in the chops of hypothyroidism sufferers. They seem to apply a one size fits all approach for us sufferers. Our medication is not a stretchy Christmas jumper that's fast fashion to be discarded at the end of the festive season. We are like puppies, we are for LIFE not just for Christmas.
Thanks for posting your information Lyn Mynott it is very helpful to know that someone is on our side. I just hope they don't take my NDT off me because this is my thyroid cancer treatment and I've only just got it reinstated!
Bye the way, I saw a small article in the Woman's Weekly magazine a few weeks ago stating that Levothyroxine is to not be routinely prescribed for people with mild hypothyroidism because there is no evidence that it improves symptoms or weight problems. It would seem that the medical professionals are trying to get rid of all thyroid medication.
Lynn if it's any help in your responses to NICE, my grandmother was on NDT in the early 1900's , for many years until she died , and she died of old age !! Nothing thyroid related !!!
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