Just published - the study we knew was being done, and there were many comments then.
Their findings are here. Comments welcomed.
Introduction: Levothyroxine is the third most commonly prescribed medication in the UK, with an annual cost to the NHS of £52 million. Due to the fluctuating nature of thyroid function, guidelines for hypothyroidism management recommend that an elevated Thyroid Stimulating Hormone (TSH) should be confirmed with repeat testing, prior to commencing treatment. International research has demonstrated that levothyroxine is routinely prescribed contrary to such guidance and frequently for those with normal thyroid function. The goal of this research is to determine the acceptability of de-prescribing levothyroxine.
Methods: Patients registered with five general practices in North-East England were invited to participate. All were taking levothyroxine for at least six months and never had a documented TSH >10mU/L. Those with a history of thyroid cancer, thyroidectomy or pituitary disease were excluded. Participants discontinued levothyroxine for a six-week period. All completed a ThyPRO-39 quality of life questionnaire prior to intervention and again at the end of the study period, along with assessment of free T4, TSH & TPO antibodies at six weeks. The primary outcome was the proportion of patients who remain euthyroid, off levothyroxine, at 6 weeks.
Results: 102 participants were enrolled. 94 (92.2%) completed 6 weeks of levothyroxine withdrawal, with 8 patients restarting early, primarily due to symptoms. 60.8% of those completing the discontinuation period were either euthyroid or had TSH in the subclinical hypothyroidism range (4.4-10mU/L). 50% of those with subclinical hypothyroidism chose not to restart treatment at trial conclusion, with higher TPO-Ab levels positively predicting those who recommenced. 65.7% of the whole cohort reported feeling either “the same” or “better” at the end of the study period.
Conclusion: Most patients prescribed levothyroxine for presumed primary hypothyroidism do not develop overt hypothyroidism 6 weeks after discontinuation of medication, highlighting the potential for de-prescribing levothyroxine in select patients, without impacting patient well-being.
All completed a ThyPRO-39 quality of life questionnaire prior to intervention and again at the end of the study period, along with assessment of free T4, TSH & TPO antibodies at six weeks. The primary outcome was the proportion of patients who remain euthyroid, off levothyroxine, at 6 weeks.
And would need retesting several more times over coming year(s)
Just testing once at 6 weeks is inadequate
And no testing of Ft3, vitamin D, folate, B12, ferritin, cholesterol or GFR
60.8% of those completing the discontinuation period were either euthyroid or had TSH in the subclinical hypothyroidism range (4.4-10mU/L). 50% of those with subclinical hypothyroidism chose not to restart treatment at trial conclusion,
It doesn’t say what % of the 60.8% were classed as “sub clinical” ……
TSH over 4 is likely to result in increasing cholesterol and reduced kidney function, reducing levels of vitamins etc etc
Exactly, symptoms can take years to slowly develop, they don't all appear within 6 weeks.
Scientific papers shouldn't come to conclusions based on how the patients "reported feeling the same or better"... That's not quantifiable. I want to see blood pressure, LDL, triglycerides, eGFR, iron panel etc comparisons before making bold conclusions that can have serious long-term consequences.
Funny that how a patient feels is relevant when they want to stop medication but completely ignored when you’re trying to get medication/ blood tests/ dosage changes etc
too right LBD , also various combination therapy research papers have had findings that patients actively preferred T3 , or NDT ...but that part of the studies always gets dismissed as not solid evidence.
Meanwhile, once they have stopped their Levothyroxine, I hope their Adrenals are coping and not going downhill! Thanks for your information. Would be good to hear if Pearce and Co manage to see these answers.
....highlighting the potential for de-prescribing levothyroxine in select patients, without impacting patient well-being.
Exactly how does one determine how a patient will react?
The very fact that 8 patients didn't even make it to 8 weeks (and likely took many months to recover) demonstrates they have harmed these people. I know for a fact I would be in this group as have previously stopped Levo and suffered enormously as a result.
Is there any mention of following up those who stopped Levo in, say, 6 months? I wonder how many start taking Levo again, after becoming seriously ill.
When you consider anything above 5 is the start point for dosing in the USA, I dont consider 4.4-10mU/L to be sub-clinical. We are not a different species to those in the USA!
There must be more to it than this? More than ‘feeling’, it’s not science!
The study excluded those with pituitary problems - did they test everyone to see if they had pituitary problems? No, these patients would be overt and already diagnosed. Again, it’s not science. Actually, it’s abysmal !
if push comes to shove , i would be willing for them to change that so the levo prescription is free, but i continued to pay for 'other / unrelated / occasional' prescriptions like everyone else has to. (however 'unrelated' could be a bit hard to define)
and while they are at it , they could deal with this idiocy of routine 28 day prescribing for levo. i currently get 2 mths which is ok, but i much preferred 3 monthly ..and it would incur less expense all round .
I’ve been on levo since 2006 and t3 since 2010/11. When I moved and changed doctors they only gave me a month at a time. Bloody ridiculous. I get 2 months now but had to practically beg for it Jo xx
The ‘doctor/researcher’ to whom you refer has other papers to his name which are even worse. He certainly is no scientist. It’s worrying seeing really good researchers/doctors having their name associated with his. In my view this must be damaging for their careers (never mind us).
Talk about the ‘expected’ final result being the basis for the research = thoroughly dodgy research. In that everyone who is anyone, is already aware of his reputation, knows exactly what the conclusions of this ‘research’ would be.
Certainly many local patients know this guys views. This result is hardly surprising coming from his reputation. If he had any dignity he should have left it well alone.
Don’t quote me on this but I think when I started with Levothyroxine (four years ago) it was the most often prescribed drug. Very soon after, it became the second most prescribed drug. Now it’s the third most prescribed drug. Mmmmm, seems like his dastardly plan is working. Get as many people either off thyroid meds or at least get them reduced. He must think himself a big friend of the government by apparently cutting costs. However this has enormously far reaching costs to individuals, families, businesses, communities, the NHS itself and the GDP.
Sadly, I am one of the local patients that know his views having been referred to his clinic some years ago. I saw the dreaded Perros but he was indoctrinated with the same views by his then head of dept (Prof P.). They have both since retired but the Prof now teaches part time at the local medical school, warping the minds of the next few generations of doctors and carrying out dubious research such as this.
My G.P. tried all ways to get me to take part in this study and we had a couple of terse conversations about my refusal to take part. I left them in no doubt about my opinion of the Prof and this research study. I feel for those patients across the region who were duped into taking part.
I agree with all the comments here, especially Tattybogles. I think he is a 🤡 of the highest order and that is the cleaned up version.
International research has demonstrated that levothyroxine is routinely prescribed contrary to such guidance and frequently for those with normal thyroid function.
I note the use of International. Maybe in USA this happens but in the UK it can be a challenge to get treatment
a little story about about saving the NHS some money.
various symptoms . feeling extremely unwell :
seen by 2 GP's and a Nurse practitioner so .... 3 appts .
sent for:
kidney ultrasound.
referred to gastro consultant ,
sent for endoscopy ... and colonoscopy.
CT scan with contrast.
repeat visit to gastro for results ( all perfectly fine)
total cost ... no idea ,presumably 'loads'
fourth GP appt (by chance with elderly semi retired GP ~ experienced in looking at actual thyroid symptoms ) ... who thought i was overmedicated based on her careful physical observations during 10 minute appt.
took thyroid bloods ..(no one else had though to do so as previous routine annual test was 10 mths previous and looked ok/ normal for me )
reduced Levo dose by 25mcg .."et viola" ... i got better.
total cost 1x 10 minute appt + TSH/fT4 test (minus 25mcg levo / day ongoing) ie. 'peanuts'
difference ... better GP understanding/ experience of thyroid symptoms
that's how to save money .... give GP's better understanding of thyroid hormone action.
unlike this little experiment, which ..... (when put into practice on a large scale , as i have no doubt it will be) ........will cost the NHS a lot more than it saves in the long run.
If doctors had a better understanding of thyroid hormone action the 52 million would likely increase -
the realisation should be that doctors need T3/T4 blood test readings and in turn T3 and T4 thyroid hormone replacements readily available in primary care with which to restore a patients thyroidal balance, health and well being as was the system before cost cutting exercises were implemented.
The 52 million could be reduced considering the numbers involved in sourcing thyroid hormone replacement - and hope the NHS actively challenges the market prices being such a major player - especially since they left themselves badly exposed over T3 prices during the past 20 years.
Optimally medicated hypothyroidism in primary care, as was the system, would stop referrals to hospitals for all sorts of other tests and consults which generally end up as a waste of everybody's time and money.
the levo bill would probably go up , i agree .... but multiple other costs would probably go down. eg, my little gastro escapade would presumably have cost enough to have paid for 'levo for life' for several other patients .
also , had i been diagnosed (& treated appropriately with an early option of a little added T3 perhaps) earlier than i was , rather than struggling and going downhill for 4 years , they may well have saved the cost of referring me for a programme of 'pragmatic rehabilitation' ,consisting of hour long face to face appts once a month for 18months ..... and some other counselling a few yrs later .
Yes - I just amended my post - sorry - I hadn't finished when I posted as was getting upset thinking of my own situation with the NHS some years ago - as I came away with the addition of PTSD - with my counselling being this forum followed by self medicating the most appropriate thyroid hormone replacement for me.
similar here ......this forum has been the most effective (and cost effective ! ) form of counselling i have ever had. It fixed the low self esteem that NHS gaslighting had given me , thanks everyone xxx
Absolutely!! They didn’t see how much cost savings there would be in other unneeded blood tests if thyroid undermedicated was properly diagnosed/managed in the first place! For myself in October, because there was no proper T3 test, only TSH and T4, I was instead sent for second round of blood tests for cytology, HEp-2 nuclear pattern, anti-CCP antibody level, renal profile, bone profile,DNA binding autoantibodies, Erythrocyte sedimentation rate - all of which revealed I was fine and by that time I had only one third of my energy left. Talk about saving resources…😅
Typical nasty nonsense from Simon Pearce. Full of bias and he is knowledgable enough to know this.
Patients who never had TSH > 10 from five general practices were invited to take part. Only those who had some doubts would take part. Bias 1.
"60.8% of those completing the discontinuation period were either euthyroid or had TSH in the subclinical hypothyroidism range (4.4-10mU/L)". Another way of saying 60.8% had a TSH < 10. Using the term 'euthyroid' Bias 2. Not pointing out that 39.2% now had a TSH > 10. Bias 3.
"65.7% of the whole cohort reported feeling either “the same” or “better” at the end of the study period" not separating out "the same" from "better" Bias 4.
"50% of those with subclinical hypothyroidism chose not to restart treatment at trial conclusion" No details on how many were "subclinical", nor does this percentage include the eight pateints who dropped out because of symptoms. Bias 5.
"Most patients prescribed levothyroxine for presumed primary hypothyroidism do not develop overt hypothyroidism 6 weeks after discontinuation of medication" Overt meaning TSH > 10. This cohort were selected because they never had TSH > 10. Bais 6.
The study raises other questions, not least how effective levothyroxine monotherapy is in patients with hypothyroid signs and symptoms and a TSH < 10. It ducks the issue that many studies show that even a mildly elevated TSH is associated with cardiovascular harm and reduced lifespan. It also ignores the harm of an elevated TSH in pregnancy. The short duration of the trial is also a problem, six weeks is long enough for most of the levothyroxine to leave the circulation (pharmacokinetics) but many effects of hypothyrodism take much longer to surface (pharmacodynamics).
Yes I have definitely noticed a rise in research papers referring to subclinical hypo being very important in the development of CVD. I recently looked at the cost of private angiograms, with the likely addition of stents, nothing less than £11,000. Can you imagine (because that’s only your starter) how costs mount. The drug bill - I have a regime of 9 other ‘heart drugs’ excluding my levothyroxine and so far No T3 to be seen. Wonderful papers on Heart and Thyroid connections.
I live in Simon Pearce’s land of care. Local Cardiologists know nothing of the wonderful thyroid research available and no-one calls him out.
He is a menace to hypothyroid patients and he is a menace to the tax paying public.
"Patients registered with five general practices in North-East England were invited to participate".I'd be interested to know how many patients declined to participate... I suspect that the patients taking part were more likely to have been started on levo by GP following random blood tests, rather than those that experienced significant symptoms before seeing their GP and being started on levo. I can't see many people that have struggled with symptoms before being treated, and then have gone through the slog of finding a somewhat effective dose would willingly take part in this study?? The number of people that told them to get lost is likely far more telling than any data they present....
also ... absolutely no data to show how well those who chose to participate were treated whilst on levo ....ie , if they were under / overtreated, or had dose yanked about by a GP with all the subtlety of a sledgehammer as we often see on here without waiting for doses to properly settle in , not checking for any other issues which may have an impact on how well they felt while on levo such as B12 etc etc etc , and felt crap on levo as a result of these issues ..... these participants might well report feeling 'the same' even if 6 wks without levo also left them feeling crap.
an honest trial would have only looked at those whose care/ monitoring was truly optimal.
p.s i seem to remember he had to extend the recruitment period for this 'study' to get enough participants . 'get lost' figures would indeed be more interesting.
I did indeed see the advertisement for taking part in this study and I would not touch it with a barge pole. Some poor naïve trusting people were no doubt rounded up. Most of us have fitted that category at some point.
I would personally love to have a conversation with anyone who joined it to see how it actually worked on the ground. It would have been an entirely different perception from the patients viewpoint, I am sure.
One of the endocrinologists/researchers (in particular) has a very respectable batch of papers to his name. He must have been cringing putting his name on this fiasco.
I'll ask around some of my friends and see if anyone they know took part. Unlikely, given that I have warned most of them about the Prof in the past but you never know...
I told my G.P. surgery twice to get lost. Diagnosed 24 years ago by Dr Perros when the Prof was his head of dept. I have crossed swords with the Prof since and adamantly refused to take part in anything he was doing.
Yup. I agree entirely AND I was sure Petros Perros was head of department at some point. Recently seriously thought about complaining officially. Could not find info anywhere about who is the current head of department - I think Simon Pearce is but I wanted to check.
Believe it or not I could not be told who is Head of Department. “We don’t give out that information”!!!! I was directed to the ‘complaints department’. So I can expect to deal with a whole lot of bureaucracy, before getting anywhere near who needs to know!
Hi,I think you are correct that Perros was head of dept for a while, then Prof P. I'll try and find out who is HoD at the moment, pretty sure Prof P went into semi retirement and is only involved in the Med school now but you know how things change.
It’s amazing this information is not freely available. Fairly recently (in the last year) I know someone who saw him as a patient. They did not want to. However on arrival, it was him and his reputation had preceded him. Got her to do the ‘coming off Levo for six months, to see if she needed it’. Of course she had a terrible time and it set her back.
I did try online to find HOD and the guy who seems to concentrate on gender issues came up. Can’t remember his name at the moment.
Why would they try to keep it a secret. Surely it should be public knowledge?
Exactly, the percentages are meaningless and the volunteers even skewed to people who suspect they don’t have a thyroid problem, though how they’ll fare over next 10 years I guess they’ll never publish.
Just came across this on X (Twitter) liebertpub.com/doi/10.1089/... . It references a study that helvella has already posted about healthunlocked.com/thyroidu... . They do seem to be a bit relentless in trying to deprescribe. I have noticed that these 'studies' that recommend deprescribing are always behind a paywall.
Of course the main problem is reliance on TSH testing rather than putting the effort (and skill) into making a clinical diagnosis. We should bear in mind that a much higher percentage of patients are prescribed levothyroxine in the USA than elsewhere. So, whilst there is some over-prescribing we shouldn't extrapolate American studies to the UK population.
Nonetheless so called 'subclinical hypothyroidism' carries substantial risk. This study jamanetwork.com/journals/ja... finds that those with 'subclinical hypothyroidism' are 90% more likely to die during the study duration of 7.3 years. I don't know of a drug that is as cheap and safe that can halve your risk of dying. it appears that dropping dead is an acceptable consequence of deprescribing.
To me it’s not only a matter of deprescribing, massive as that is. In this particular endo’s case it’s purely a vanity project. He loves a dig at all medics involved in thyroid care. I am pretty sure he has been instrumental in the wholesale removal of T3 in GP practices throughout the UK. If his excuse is that GPs don’t know what they are doing, then it’s his (endocrinology) responsibility (surely) to ensure they are properly trained instead of just removing work which has been in the GPs remit for generations.
That is of course, if he cared at all about patients.
I wish a greater effort could be put into working out why so many people become hypothyroid. Why is it the third most prescribed medication? Nobody seems to care. I’m suspicious of fluoride, in the water we drink, our toothpaste, mouthwashes, dental treatment. Why do dentists have so much influence over our lives?
It’s odd that so little attention is paid to the root cause. I’ve never understood why dental decay is ranked as so dangerous that the whole population has to be treated to prevent it when the preventative measure could be causing all the damage & cost that hypothyroidism does.
Trying to ascertain where the hypothyroidism epidemic is coming from seems a much better way to cut costs & improve lives than carrying out the ridiculous “research” that this paper is based on.
I completely agree with you. Years ago I was googling around and came across: Namaste dr Barry currant peatfield and fluoride. Very interesting reading about fluoride and hypothyroidism. Jo xx
Levothyroxine is the third most commonly prescribed medication in the UK, with an annual cost to the NHS of £52 million.
That claim alone requires clarification and justification.
Many medicines, you just take a tablet. Some, there re two or three potencies, but for most there is no precision about dosing. Take a statin. Take a PPI. Take a paracetamol (or two).
But with thyroid hormones, precision of dosing is important. We could well have members taking 100 + 50 + 25 + 12.5 to reach 187.5. (OK - an unlikely extreme - nonetheless possible.) Or alternating 50 and 75.
I'm not convinced that the claim can be interpreted as "number of people taking levothyroxine", or "number of doses prescribed/dispensed". I suspect it is something of a fudge.
Levothyroxine is in fifth. But that probably would be all seven formulations of levothyroxine tablet, plus oral solutions, and just might also include the small number of desiccated thyroid prescriptions.
Whereas for statins, while Atorvastatin is top, each statin appears to have been considered separately.
Whereas for antidepressants, while Sertraline is top, each antidepressant appears to have been considered separately.
Whereas for blood pressure medicines, while Amlodopine is top, each blood pressure medicine appears to have been considered separately. Clearly so as Ramipril is also separately identified in that list.
Considering that in 2023, the NHS reported fraud amounting to 7.5 billion!! pounds, it should be evident that there are other and more effective ways in the NHS to recoup money.
In addition, what additional burden will be put onto the NHS by not treating thyroid patients accordingly as diabetes, lipid abnormalities, obesity as well as mental health issues are certainly not cheap conditions, especially when they require monitoring and treatment over a long period of time. Not to mention the quality of life of these patients.
If they want to save some money, as someone so rightly pointed out, perhaps treat people with thyroid disease properly with levothyroxine (as well as with other thyroid medications, if this alone is not effective), so they would save on clinic appointments and additional medications, as the primary cause of these secondary conditions has been addressed through appropriate doses of thyroid medications. And perhaps this could even free up health care professionals to look after other patients.
It's really not rocket science as they say, but it seems that for many it is.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
