Recent Pulse article for GPS. šŸ˜”: Updated... - Thyroid UK

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Recent Pulse article for GPS. šŸ˜”

Mollyfan profile image
Mollyfan
ā€¢27 Replies

Updated guidance from NHS England on treating hypothyroidism warns liothyronine should only be initiated by a consultant endocrinologist and patients taking it should be reviewed be a specialist if they have not been already.

It follows a joint position statement from the British Thyroid Association and Society for Endocrinology which concluded patients can be considered for a trial liothyronine but only in certain circumstances.

Under the recommendations, combined liothyronine and levothyroxine can be prescribed by a specialist in the small minority of patients with persistent symptoms, as long as the diagnosis has been confirmed, co-morbidities ruled out as the cause and levothyroxine dose optimised.

Once treatment is stable, this can be passed to the GP but only if they are willing to take over the prescribing it adds.

The NHS England advice for prescribers, which links to the joint statement also sets out liothyronine treatment should be withdrawn if not working.

It comes amidst ongoing regional variation in the use of liothyronine and conflicting guidance which experts say has put NHS clinicians in a difficult position.

Despite 20 years of debate, the issue remains controversial, the joint statement says, with trials showing no evidence of benefit.

Currently there is a 49-fold variation in prescriptions for liothyronine as a proportion of treatment between regions in the UK, it notes.

Some areas had banned its use due to dramatic price hikes but more recently liothyronine cost has come down. It remains 50-fold more expensive than equivalent levothyroxine monotherapy.

The cost of liothyronine increased by almost 6,000% in a decade ā€“ from Ā£4.46 in 2007 to Ā£258.19 by July 2017, as revealed in an investigation by the Competition and Markets Authority.

It was recently announced that the CMA ruling had been upheld after an appeal and the Ā£84m fine for Advanzā€™s excessive pricing will stand.

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NICE guidelines do not recommend routine use of liothyronine either alone or in combination.

Clinicians are told it can be prescribed in ā€˜exceptional circumstancesā€™ but this is unhelpful given many patients with persistent symptoms would likely put themselves in this category putting pressure on doctors to prescribe.

ā€˜This has put NHS clinicians in a difficult situation. While neither NICE nor [the Regional Medicines Optimisation Committee] support routine liothyronine use, both leave the possibility open to some patients,ā€™ the statement concludes.

The BTF/SfE state that doctors are not obliged to prescribe any medication that they believe is not in the patientā€™s best interest.

ā€˜In particular, doctors have no obligation to continue to provide NHS prescriptions for liothyronine that have been started by another medical practitioner (including private practice), or when purchased independently of medical advice or supervision from an online or overseas pharmacy,ā€™ it adds.

ā€˜Many endocrinologists may not agree that a trial of liothyronine/levothyroxine 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.ā€™

It adds that online surveys show most patients continue to have persistent symptoms after liothyronine use and in that case, it is reasonable to stop its use.

ā€˜Given limited efficacy and long-term safety data around use of liothyronine, long term prescription should be reserved for a very select group of patients with evidence of sustained response to combination therapy,ā€™ the statement concludes.

However, both levothyroxine and liothyronine are currently overprescribed including in patients with transient elevation in TSH and those with persistent subclinical hypothyroidism, the joint statement says.

Professor Simon Pearce, professor of endocrinology at Newcastle University and co-author of the position statement, said all the evidence suggests that liothyronine makes no difference.

ā€˜This is why this is so controversial because where patients do feel well on a treatment, there is little rationale to stop it.

ā€˜If the results found in trials of [liothyronine] had been found for a cancer drug that drug would be dead in the water. But there may be a small number of patients who feel it makes a difference.ā€™

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Mollyfan
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diogenes profile image
diogenesRemembering

" So Professor Simon Pearce, professor of endocrinology at Newcastle University and co-author of the position statement, said all the evidence suggests that liothyronine makes no difference". He is being deliberately selective in this statement. He relies heavily on clinical trials that were extremely badly designed and could not separate the effects on those who can take T4 only and the sizeable minority who cannot convert T4 to T3 sufficiently for health. There is plenty of evidence to contradict his arrogant statement, and he must be either ignorant of this or chooses not to address it because it offends against his prejudices.

FancyPants54 profile image
FancyPants54ā€¢ in reply todiogenes

This man will be personally responsible for the declining health of thousands of people. But he will never be taken to task over that horrendous situation. God complex springs to my mind.

MissGrace profile image
MissGrace

I hope bloody Professor Simon Pearce never becomes hypo and has all the horrible symptoms. I hope if he does his GP doesnā€™t keep his TSH ā€˜in rangeā€™ on Levo whilst he continues to feel like sh*t. I hope he wonā€™t be terminally tired, permanently constipated until he gets diverticulitis, become obese and find he canā€™t work any more. I do hope he isnā€™t treated as if he has a mental illness and is imagining it if all this happens Or do I hope that?

knitwitty profile image
knitwittyā€¢ in reply toMissGrace

I have taken part in a web talk where Simon Pearce was one of the key speakers, I feel far less charitable than you and I hope he suffers all the indignities of being Hypo and I would also suggest that in the interests of science he should have his thyroid removed immediately and then be denied ANY treatment until his TSH is at least 10 and subsequently denied any supplementation with T3 even if he needs it.

We Hypos who are treated by Endo s and doctors who follow his prognostications would likely be quite happy to volunteer to remove his thyroid gland for him. I know I would.

I found him to be arrogant and very sure of himself and also very reluctant to answer the huge number of questions raised by people who were asking about T3 in the web talk.

MissGrace profile image
MissGraceā€¢ in reply toknitwitty

I agree. Iā€™ve got A Level Biology - letā€™s remove his thyroid using a knife, fork and spoon. šŸ¤£

knitwitty profile image
knitwittyā€¢ in reply toMissGrace

Bring it on MissGrace !

arTistapple profile image
arTistappleā€¢ in reply toknitwitty

And he is a complete dullard.

arTistapple profile image
arTistappleā€¢ in reply toMissGrace

Apparently he has had some sort of problem with his own thyroid. I donā€™t know the details myself but I worry about a ā€˜man on a missionā€™ who deliberately stamps on everyone to get his own way. He strikes me as man who lacks certain aspects of circumspection.

tattybogle profile image
tattybogleā€¢ in reply toarTistapple

Artistapple MissGrace

SP tweeted that he had hemi thyroidectomy end of last year (thyroid cancer) and has subsequently returned to work .

he's not mentioned being on levo, so i assume his remaining half is providing adeqaute thyrid hormone ( i'm sure he'd be publicising it quite widely if he was on levo .. since he firmly believes levo is wonderful)

Sadly , having a hemi thyroidectomy hasn't stopped him being an arrogant arse .... yet .

arTistapple profile image
arTistappleā€¢ in reply totattybogle

Thanks for reminding me Tattybogle. I rarely dislike anyone with a passion but him I do. Like you say his ā€˜illnessā€™ hasnā€™t stopped him. Itā€™s just unbelievable that this man holds so many of us in this Hell of hypothyroidism. I hope if he finds he needs T3 he canā€™t find an endocrinologist to help him and gets a taste of his own medicine.

serenfach profile image
serenfach

It adds that online surveys show most patients continue to have persistent symptoms after liothyronine use and in that case, it is reasonable to stop its use.

The patient had lost a leg and was given a crutch. The leg did not grow back so we took away the crutch.

TaraJR profile image
TaraJRā€¢ in reply toserenfach

That sums it up well

HowNowWhatNow profile image
HowNowWhatNowā€¢ in reply toserenfach

I have hypo symptoms remaining after I have been on levothyroxine for 9 years.

Why not bin the levothyroxine too, BTF, since your endocrinologists are on a mission to bin all our energy, aspirations and dreams in the name of saving the NHS money?

MissGrace profile image
MissGraceā€¢ in reply toHowNowWhatNow

Absolutely. TouchƩ.

TaraJR profile image
TaraJR

Simon Pearce is doing a training webinbar on hypothyroidism for GPs via British Thyroid Foundation. 20th September. Why don't we all attend. It says for GPs, but patients can too.

The last time he did one for GPs he said (about T3) that anyone who prescribed something 'proven not to work' could be called a charlatan.

Appalling and against all national guidance.

Surely he'll answer some Qs submitted beforehand

btf-thyroid.org/meet-the-ex...

MissGrace profile image
MissGraceā€¢ in reply toTaraJR

Takes a charlatan to know one I guess.

knitwitty profile image
knitwittyā€¢ in reply toTaraJR

Just a small warning, I attended one of his webinars a while back. There were numerous questions about T3 use which he said he would answer after the webinar ( as they were obviously too challenging for him on the day !) as far as I'm aware he never answered those questions.

He was very anti-T3 and insisted there was no need to ever test it as it fluctuated too much. Maybe if you are taking supplementary T3 it does fluctuate but I would have though that if you had a functioning thyroid gland your T3 would be pretty constant throughout the day with maybe minor fluctuations in line with the circadian rhythms.

He came across as someone who had already made up his mind that most people who take T4 ( Levothyroxine ) don't really need it and that T3 should rarely, if ever , be prescribed .

I might sign up for it but if past experience is anything to go by then he may again refuse to answer questions.

Good luck everyone, if you attend.

TaraJR profile image
TaraJRā€¢ in reply toknitwitty

I agree completely. Many of us do. Thyroid groups do! He went completely against national guidance. I think the more the better, to be on this webinar, send in lots of questions beforehand, hopefully bombard him with T3 questions. I don't think BTF dare ignore all of them.

knitwitty profile image
knitwittyā€¢ in reply toTaraJR

I have registered to take part, bring it on as they say !!

TaraJR profile image
TaraJRā€¢ in reply toknitwitty

I'm recovering after surgery.. hope I don't have a relapse!

knitwitty profile image
knitwittyā€¢ in reply toTaraJR

Wishing you a speedy recovery ! If you do take part maybe have a Kalms before it begins and practise some deep breathing to relax you !! :)

TaraJR profile image
TaraJRā€¢ in reply toknitwitty

Thank you! Oh I'll be there if it kills me! I'll send questions in first. Think that's the way they want questions. I'll get some Kalms šŸ˜‰

HowNowWhatNow profile image
HowNowWhatNow

Simon Pearce is a menace to thyroid patients. He would prefer we all stay in hibernation mode, a deadweight on our families and a loss to society, than give an inch in response to what his patients say about feeling better / worse.

He will be remembered in history just as those Victorian doctors who called their female patients ā€œhystericalā€ for daring to put voice to their symptoms and to connect their symptoms to reason and fact. Bad science, bad faith & terrible safeguarding of patients.

MissGrace profile image
MissGrace

Or, more succinctly, heā€™s an arse.

knitwitty profile image
knitwittyā€¢ in reply toMissGrace

I can see that you and I are on the same wavelength MissGrace ! :)

diogenes profile image
diogenesRemembering

Of course there will be some fluctuation in FT3 results over time. But one can use this to advantage. Euthyroid FT4/FT3 ratios are around the 3.0/1 to 3.5/1 region. Now, if one had an archive of healthy FT3 and FT4 results one could compare them with those in illness. In general in hypothyroidism, the ratio will SMALLER than when well because the ailing gland puts out as much T3 as it can whilst failing to produce enough T4. In nothyroidal illness the ratio will be LARGER, because the illness reduces T3 production more than T4. So I've put forward this idea in our upcoming book. The ratio is a rough guide to T4-T3 transformation which is an indicator of health. But at base what is essential is using the art of medicine to discuss with and observe the individual face to face to describe the options for treatment or not.

Sorry for the inversion error.

Vasiliki99 profile image
Vasiliki99

No idea šŸ’”šŸ’”šŸ’”šŸ’”šŸ’” none , took Levo plus lio but nothing works having said that s bit of lip did no harm whatsoever

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