The BTA/SfE said nearly 2 years ago that they were writing a new T3 consensus statment. It's published today.
The joint thyroid patient groups believe that NHSE, RMOC and PrescQIPP are waiting to read this before they finalise their new T3 guidance, and will base theirs around this. They all wrote drafts in 2022 which were awful. The joint patient groups sent very strong responses, and found that none of them knew the other was writing new guidance, nor that the BTA were. We recommended they all talk to each other. See what you think of the BTA/SfE statement
thanks for sharing Tara, I can’t get it on my phone no signal, doesn’t sound good, is it referencing people needing trials for t3, are they stopping them or taking off people already on it xx
Use of liothyronine (T3) in hypothyroidism: Joint British Thyroid Association/Society for endocrinology consensus statement
Rupa Ahluwalia, Stephanie E. Baldeweg, Kristien Boelaert, Krishna Chatterjee, Colin Dayan, Onyebuchi Okosieme, Julia Priestley, Peter Taylor, Bijay Vaidya, Nicola Zammitt, Simon H. Pearce
Persistent symptoms in patients treated for hypothyroidism are common. Despite more than 20 years of debate, the use of liothyronine for this indication remains controversial, as numerous randomised trials have failed to show a benefit of treatment regimens that combine liothyronine (T3) with levothyroxine over levothyroxine monotherapy. This consensus statement attempts to provide practical guidance to clinicians faced with patients who have persistent symptoms during thyroid hormone replacement therapy. It applies to non-pregnant adults and is focussed on care delivered within the UK National Health Service, although it may be relevant in other healthcare environments.
The statement emphasises several key clinical practice points for patients dissatisfied with treatment for hypothyroidism. Firstly, it is important to establish a diagnosis of overt hypothyroidism; patients with persistent symptoms during thyroid hormone replacement but with no clear biochemical evidence of overt hypothyroidism should first have a trial without thyroid hormone replacement. In those with established overt hypothyroidism, levothyroxine doses should be optimised aiming for a TSH in the 0.3–2.0 mU/L range for 3 to 6 months before a therapeutic response can be assessed. In some patients, it may be acceptable to have serum TSH below reference range (e.g. 0.1–0.3 mU/L), but not fully suppressed in the long term.
We suggest that for some patients with confirmed overt hypothyroidism and persistent symptoms who have had adequate treatment with levothyroxine and in whom other comorbidities have been excluded, a trial of liothyronine/levothyroxine combined therapy may be warranted. The decision to start treatment with liothyronine should be a shared decision between patient and clinician. However, individual clinicians should not feel obliged to start liothyronine or to continue liothyronine medication provided by other health care practitioners or accessed without medical advice, if they judge this not to be in the patient's best interest.
that’s absolutely disgraceful, we as patients suffering no what’s in our best interest when we are the ones suffering, compared to 2 minute discussion apt with a Gp (if you are lucky enough to get one!) all text book protocol treatment and not listening to how it impacts the individual patient.
Dissatisfied with treatment! That’s got to be so patronising! We aren’t complaining we are genuinely ill! Would love to no who they chose for the trial, prob monitored thyroid patients already doing good on levo and can convert very well. Without any thyroid treatment we would go into thyroid storm and could possibly die, being treated with levo we maybe won’t die physically but our body on the other hand is not functioning it’s best quality of life, and now the price of liothyronine has come down and yet still they are refusing to help and they refuse to acknowledge the benefit it could be to so many people. Really appalling, we know our own body’s best not some doctor who doesn’t even read your notes before a consultation, thyroid as we all know affects every part of our body why should they not think that we should be considered a priority of treatment x
I've a feeling Lyn Mynott referred to this in her Thyroid Uk update video a couple of weeks ago.
Lyn mentioned the T3 campaign, I and believe she said she would update us all at a later stage as ' it didn't look good ' and that she was very disappointed in the discussions.
Very disappointing and as Bianco implied in the video last evening the issue is one of peer review pressure and an unwillingness to face up to the massive injustice within the NHS system encouraging a 2 tier health system and if you can't afford to go private, you DIY :
Nice to put a face to a name - though thought some names were on the wrong people as I had a man with a woman's name and visa versa ?
I didn't put my camera on - as I don't know how to do it !!
Yes, that's what Lyn referred to. Discussions had been bad, tbh. I know we still have issues with Bianco on suppressed TSH, but he's much more reasonable on most things. PLUS he listens to patients.
Well I'm not too sure on that last comment as I think a couple of people forgot their cameras were on.
Bianco lives in a world where you automatically get the relevant blood tests on which to base considered opinion for each patient and acknowledges that each patient is unique as should be their treatment plan and options.
If you live in a system where you haven't any treatment options it's a bit of a slam dunk isn't it !
Blanket statements make guidelines and made to help the medical professionals guide treatment for thousands upon thousands of patients most of whom it appears have a functioning thyroid and a TSH that manages to respond, and stay in range, even when taking any form of T3.
Well it does not include me:
Diagnosed with Graves and post RAI thyroid ablation 2005 and with a TSH @ 0.01 whether on T4 monotherapy or latterly ( 5 + years ) NDT - if I am to be as well as possible and with my health and well being restored as best as I can.
Bianco did concede that those who had had a thyroidectomy would likely feel better with a small dose of T3.
Thanks for alerting us to this. The endocrine Gestapo are at it again.
I've had to calm myself down before replying. If you want to know my real opinion I suggest you listen to a few Yevgeny Prigozhin videos to get the gist of the words I would like to use.
This is a real step backwards. Another attack on patients aided by a single highly compliant BTF representative. No representatives from the larger thyroid support groups.
This paper excludes central hypothyroidism, fair enough. But, they then implicitly assert primary hypothyroidism is the only cause of impaired thyroid hormone action. No reference to endocrine disruption, subnormal TSH secretion, effects of antibodies or the recently discovered selenoprotein P antibodies that inhibit T4 to T3 conversion. A neat trick, these other forms of hypothyroidism will not be easily detected by TFTs, nor will they respond to normalising serum hormone levels. If you fail to convert T4 to T3 in local tissues putting a little T3 into the blood ain't gonna fix it.
Numerous straw man studies are cited. Select patients with primary hypothyroidism (the wrong cohort) and normalise their serum TSH, fT3, fT4 (wrong therapy) and then you can say T3 doesn't work. This has happened so often I truly believe it is deliberate. As a coup de grace they insist liothyronine "should only be considered if (primary) hypothyroidism is substantiated with appropriately raised TSH or a low fT4". You can only have treatment if our simple minds understand it.
There are vague references to the safety of liothyronine in spite of clear evidence that levothyroxine monotherapy carries higher cardiac and cancer risks. Julia Priestley is clearly aware of the latter as I sent her details some time ago. We might expect patient advocates to stick up for patients and challenge biased dogma.
The truth is we would be better off without these doctors. On balance they do not contribute to patient wellbeing. It is probably the case that there was disagreement and a consensus was reached. Sometimes you have to stand up for what is right and not reach a consensus.
How many years has one to stay standing, fighting for what you know is right -
especially when ill - and with time running out - it is just awful :
Knowledge is power to walk away and DI Yourself and just hope your own treatment option is available long term and the planes keep flying and the postman rings/ knocks thrice !!
Excellent review, also they published in Clinical Endocrinology journal which I think belongs to SfE. So no Peer Review not from other Endos or patients.
There is a glaring error.. twice they mention 1:3 T3:T4 ratio to use yet they still refer to 17:1 in other parts. A proper review would have found those.
The 1:3 ratio is correct, it refers to the relative potency of levothyroxine and liothyronine tablets.
17:1 is based on the T4:T3 ratio secreted by the thyroid. This is highly variable and some studies quote 13:1. It depends on whether you measure the molar ratio or by weight (don't ask any questions my chemistry is long gone). Of course it's nonsense because the thyroid puts the hormone direct into the blood and tablets have to be absorbed with big differrences in T3 and T4 absorption rates and half lives.
The big error is the assumption that normalising fT3, fT4 levels is the objective. The objective is to overcome the disorder, which in most cases is either some form of resistance to thyroid hormone or impaired deiodinase. In either case normal serum hormone levels will not compensate for reduced hormone activity.
The objective is to overcome the disorder, which in most cases is either some form of resistance to thyroid hormone or impaired deiodinase. In either case normal serum hormone levels will not compensate for reduced hormone activity.
The only good thing about this new BTA/SfE Statement is that T3 is acknowledged as a remedy for asymptomatic T4 treatment, in contrast to their last 2015 Statement.
I have never heard that description ‘early Hashi hyper lives had suppressed TSH’ expressed in that way. I would say that has been my experience but I have come to comprehend it as subclinical. This is a better explanation/understanding than I have had previously. It makes so much sense. Thank you.
Me too. In many ways since starting levo (no matter how imperfect - and imperfect it certainly is) I have found some level of help - some of the time. However it’s partly why I feel so strongly about this dreadful document. Their intention is to keep us trapped in this maelstrom. What gives them the right to do this? Honestly a prolonged dose of carbimazole? is called for each of them for encouraging this madness. I keep envisaging the medical experimentation of the Third Reich (overkill?) happening to us. The writers of this document are either severely deluded or doing it on purpose. Empathy, humanity, would be good but unnecessary, if a practical way ahead was to be forged. We do not need another document regurgitated from a lousy previous effort.
Thank you I have read the report in full. I am pleased to say that because I live in France the T3 problem never applies here only the NDT which has to be brought into France as something else.
Easy to get a prescription from the GP surgery. It's made here in France and called Cynomel T3. Just a few Euros for 30 days. I have no thyroid and, therefore, all of my medication, scans operations etc.etc. are free here.
It appears to be related to the price which is charged to the NHS. Although they waste millions of pounds getting things wrong and changing all the time. My sister was a A & E nurse for years and my nephew is a stroke consultant both NHS. The money that is wasted is incredible. The cost of an A & E visit is so high but now patients cannot get face to face appointments with their GP's they simple turn up at A & E.
😮😮😮😮 That's amazing in France it's so much better. I too have no thyroid gland. Removed 20 years ago. In England (not sure about other parts of UK, we do get free prescriptions but that's it! That's excellent
What I noticed in both documents - the consensus doc and the supplementary doc, is that they seem to be pushing taking people off thyroid hormones altogether if they don't feel well on treatment.
This is medically approved torture, in my opinion.
But then raising the TSH to 10 before agreeing to treat is torture too.
Hi a few thoughts 1. Shared care why? Just cost and admin and currently guidance is may be used so does this mean BTA think we all have to have one 2. TSH 10 is not NICE 3. Why does T3 have a placebo but T4 doesn't?...
what do they do if they take people off all meds “to see what happens with TSH ( in the hope it goes over 10 to justify treatment)” but it doesn’t budge one bit!!!! Have they said how long they are going to give it? Mines been deficient for more than 30 years, I’ll be dead if they leave it too long!
I also notice that they say those that are established and doing well on combo can be referred back to GP who can continue prescribing (if they are willing) by monitoring TSH which should be in “normal” range -another out then!
At least someone has seen fit to correct Professor Pearce’s appalling spelling and grammar. I am relieved. 😵
I have to say the whole thing seemed to be him, with tiny concessions implied but then it immediately becomes impossible to introduce them due to TSH again taking absolute centre stage - even although the range appears to be extended.
It’s a shocking document really. Whilst saying e.g. “Most randomised trials have reported no difference in adverse events rates between individuals randomised to levothyroxine or combination Liothyronine/Levothyroxine therapy.” It is followed immediately by another statement implying the previous to be an utter lie. Its intended to display open mindedness but that is clearly not the case.
I can see no progress has actually been made on subclinical. If the same issues happened to me today as they did twenty years ago, I would still end up in the Intensive Care Unit at huge expense to the tax payer.
Comorbidities? Some truly mad stuff written about those. Now I see where GPs get their stupid notions running around trying to set us up with all sorts of regimes for this or that or the next thing. No wonder they think we are hypochondriacs as opposed to hypothyroids. Their guidance is not to look to proper treatment, for presumably properly diagnosed hypothyroidism (rather a subtle insult to GPs I thought) and its known and recognised Comorbidities but for some other disease process altogether. Whilst I do not write this off entirely, my sense is that effective treatment for hypothyroidism (once it’s finally discovered) is of paramount importance and applied as quickly and effectively as possible, will in fact deflect comorbidities.
Again on the one hand we are guided to listen to opinion that research on T3 is poor and that more should be done. Enough said on that.
We will get no help from this document and actually it makes the standard GPs job so much more difficult in helping their patient - should they be willing.
Have they ever thought that the co- morbidities might have been caused by the diminishing availability of thyroid hormone while they were holding out for the magic TSH number of 10 before beginning any treatment in spite of the obvious signs and symptoms that were sat in front of them? Why do these people even exist??? 🤯
Just watched a video where they explain average higher BMI and higher cholestrol etc on T4 monotherapy yet weight seems to be considered a comorbidity for starting T3 treatment so its a chicken and egg situation. I worry that it is actually monotherapy that it is putting me at risk of osteoporosis and AFib due to low in range T3 and low T3/T4 ratio, and T3 would help reduce this risk, but they don't cover that ......
Totally agree with you. I too have problems with the weight. I never went beyond 10 stone before all this kicked off and it was one of the first things that made me suspect the thyroid was packing up, especially as there is a family history of hypothyroidism. In addition, my cholesterol levels went up too and, even though I have been treated with a T3/T4 combo since 2011, they have never come back down to "normal" levels. Both these issues have never gone away and I am now a 13 stone whale with lots of cholesterol!
Me too, I suddenly gained 3 stone, lost one with low calories, and exercise, started levo and seemed to have gained 2 so 4 in total. I don’t expect to be back to my 40s weight, and certainly nothing before that, that would be too much to ask but 2 stone would be a great start. I’ve done 2 thyroid related nutrition lifestyle courses to change my eating, plus a meno one and dont identify any hidden calories, but can’t go too low calorie as it wiped me out further last time, but at least got me diagnosed …..
Yes well it would help if they had a clue. However instead of using this opportunity to bring the document truly up to date, they have chosen to use it to continue with their dreadfully undisguised subterfuge against the patient. As ever, Pearce’s efforts to undermine GPs as well as patients, is all too evident. He just can’t resist it. I guess he is seen as no friend to GPs in medical circles, giving them virtually no leeway to treat as necessary - if they are interested.
I was disappointed to see Dr. Peter Taylor’s name on the document, in particular because he comes across as an enthusiastic researcher; unlike Pearce. We so need some enthusiasm in this field (barring diogenes off course). The new President of the BTA’s name is also attached, for whom we had high hopes, or at least I did. She says she wants more research into dosage, which I think is of vital importance to proper T3 trials. This is an area totally ignored by the likes of Pearce with his snide remarks.
“Havingthyroidfunctiontestedis a markerof increasedpsychological morbidity”. I found this to be distasteful, presumptuous and downright undoctorly! This openly expressed view, given in a way which clearly taints any communication with the patient. This comment communicates the idea that the patient has no awareness of their situation, wrongly. It’s my view that we are all too aware of our situation and therefore our consequent pressure and pursuit of due treatment; which will continue to be unforthcoming on the basis of this ‘guidance’. However this view encourages ‘carte Blanche’ for totally ignoring us patients and our views. This document is like something out of The Dark Ages. It’s monstrous and out of step with wider contemporary views.
I am only an ‘incomer’ living where Pearce ‘rules’ but I was under the impression that Newcastle University had reason to be proud of its record of research. However I feel thoroughly ashamed of this document, disguising itself as enlightenment re: the treatment of hypothyroidism and its association to the University by Professor Pearce.
So, what should we do from here? I am aware that there is too much to cover on the forum. Do we have an official channel of our own to make our views known? This document would do well to go back to the drawing board (the beginning) for complete reconsideration.
Many thanks for this post. It’s frightening reading. Combination therapy has been life changing for me. So sad to read it’s content and recommendations. Looks like we will have to continue to fight for the right treatment.
Reading this, I don't think the penny has dropped! All this offering gives is the usual number-dominated assessment of successful treatment. The individual patient doesn't figure: if there is discrepancy between patient presentation and the numbers believed to define correct treatment, it's the patient at fault for being anxious, ascribing the problem to things other than thyroidal (ie somatic). There is also muddled thinking in on the one hand denouncing combination treatment because of no firm advantage seen in trials, and yet admitting that some patients prefer, and prosper on, liothyronine either alone or with T4. Why they didn't therefore dismiss the trials out of hand (for reasons that have been thoroughly aired) is a mystery. You can't have both outcomes of no general effect and individual benefit without coming firmly down against the older trials. We don't get a look in, because (somewhat arrogantly put) I don't they can grasp the importance of our papers. They wander about the TSH landscape in a daze. We and lots of others have shown that TSH is not a viable option, in patients with no thyroid, if by this they mean keeping TSH in the "healthy normal range" on treatment always in everyone (even on T4 alone, let alone combination). FT3 gets no attention in anything like a serious way. It's piquant that, being professionals, they show themselves to be such blinded amateurs. Thyroid treatment should be lightyears away from the simplistic Janet & John offering. Of course in any group of people, there are those who wrongly ascribe their illness to thyroidal relationships. Once again, repeat after me: the patient is paramount, the numbers are subsidiary! Anywhere in the range will not do!
Presumably the working title for this document was
"If they moan about it, just take it off 'em"
well i suppose my Dad would have agreed that ungrateful bickering children are quite effectively dealt with by that method .... it worked well enough on me when i was 7 .
While they're at it , since it's all placebo and we can't tell the difference anyway, and we 'just like the idea' of bigger doses ,...... they could save themselves a load of arguments by marketing some 25mcg levo in "100mcg T4 Unicorn brand " packaging , and some 25mcg Levo in "20mcg T3 Amazing Whizz " packaging ... and we'd feel so much better ... simples.
... anyway .. get back to bed children ... you're all supposed to have been asleep hours ago .... .and turn that computer off ... or they'll take that off you too.
"It has been proposed that some people have a genetic inability to make sufficient T3,42 sometimes referred to as “poor converters.”
A key question is why this putative genetic phenotype does not manifest in childhood or in euthyroid people" ~~~~~
????? Well probably because a FUNCTIONING thyroid is able to compensate ....... do we really have to explain it to them ? .... haven't they done ANY reading about "How the Thyroid works" ?
But let's also consider that it *does* manifest in childhood they just keep trying to tell us it doesn't.
And how can they possibly know if they insist on only testing TSH.
I've seen several posts here of parents testing their children and the results looking a bit iffy, if not fully hypo, and the GP would certainly dismiss the results.
But let's also consider that it *does* manifest in childhood they just keep trying to tell us it doesn't.
Think of the average child of preschool age. They like climbing on things and then jumping off. I was no different. But I found out very quickly that doing this would make pain shoot up from my feet, through my ankles, and up my lower legs and it was so bad it was shocking. I had trouble with pain in the soles of my feet and my ankles throughout life. God forbid I ever had to jump off anything! I wasn't fat as a child, but in adulthood I blamed myself for this foot pain because I did get fat. I now know this problem is plantar fasciitis, which is common in hypothyroidism.
When I finally got treated for hypothyroidism my plantar fasciitis disappeared very quickly, almost without me noticing, and even before I got anywhere close to optimal dose of anything. I think I've had hypothyroidism since I was born. I wonder what my childhood would have been like if parents, doctors, and teachers hadn't decided that almost every single problem I had was rooted in laziness, and instead had had me treated for being hypo.
totally agree, I myself had plenty of symptoms not picked up to checked, but as I go older and questioned kit my bloods always came back as normal, that’s all they would say, no acces to ranges just normal, I had all the symptoms of overactive when I was younger then swung to under. Had so many bloods done but still normal so they said. Eventually picked up only randomly when my hands were shaking like I needed an alcoholic drink! I was in a bad state with hyperthyroidism and only get to see the endo with hyper, asked why the hell it wasn’t picked up all those years of suffering and as a child, he said the blood fluctuates do much during the day uou have to be lucky to catch it at that time! No one understood in my family anything about the debilitating time of it you have they actually never heard of thyroid before I was diagnosed and no one understood, it’s only when someone has it themselves who suffers that they eventually get it which is bad really as no support at all as not enough information about the thyroid years ago when no access to internet. My mum went on to get diabetes which her dad had, I said to her you prob show for thyroid eventually which she did
True, in my basic reading understanding I just have single DIO2 issue on one side, and I also have a compensatory one highlighted, so from what I've read this maybe never causes a noticeable problem if it does there is more chance the older you get ....
And since I never got a test until now who knows what my values were years ago and when this all started to creep up on me.
You may have DIO1 issue? Or another type of conversion issue. That's why this prescriptive style of guidance is harmful to patients. If we knew all the intricacies of the thyroid processes and how they balance in a homeostatic way with other body processes we would be in a better place with regard to diagnosing and treating thyroid disorders.
Until we reach that point we need Endocrinology to accept that serum levels are just one marker of what's going on in our bodies. How we feel and the collection of symptoms we experience need to be given much bigger significance.
yes I have the DIO1 and COMT flagged on the report too, and read that Tgab which I have often has symptoms of hoarse voice/throat and puffy eyes etc. Yet with my TSH T4 now in range (and even T3 not that they will even look at that) that’s all they are interested in. I can’t get my head around how it’s like being in mediaeval England - all the new evidence and research, yet they will be putting us on some village ducking stool soon for wanting to meddle in evil T3 hocus pocus.
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Petition Update (Re-instate T3 as a prescription drug available of the NHS)
Annoying chat with new endo
