This trial run by Newcastle Hospitals Trust ends in November 2024. It involves hypothyroid patients stopping their thyroxine for 6 weeks - to see how they felt when not taking thyroxine, and if they'd recommend a friend doing the same.
ITT Improve Thyroid Treatment Group would like to know if members have been asked to do this, whether or not you thought it was a good idea. What was the outcome? Please comment here, or send me a private message if you prefer.
Or has this happened in any other areas, using the ideas in this trial? Thank you.
My sister in law ,was in a nursing home ,who also had dementia and wanted to end her life,she was 93 and stopped taking thyroxine,I told her daughter if she stopped her thyroxine she would die,she said ,they know what they are doing at the home,She was dead in 10 days.
The lack of the thyroid meds wasn’t to blame. Levothyroxine has a half life of 8 days. So after 8 days 1/2 of the last pill taken in still in your system, plus just under 1/2 the one before that, and a tiny bit less than 1/2 of the one before that, etc.
It takes quite a while for the full dose to get out of your system.
Personally, I’ve been having major issues with thyroid meds (and others!) due to allergies to the inactive ingredients. For 2 years I’ve had hardly any meds, and currently standing at day 20 of none (and that’s not the longest I’ve gone!).
Yes, someone frail and in a nursing home will suffer more fallout than me, and quicker. But 10 days, I doubt very much
I certainly wouldn't do this having no functioning thyroid gland at all. Why would you want to do this? Anyway, it takes 10 days or so to really start to feel the effects. I would feel very ill indeed.
Yes, I felt really ill when I neglected to increase my thyroxine from 100 to 125mcg, so who knows hpow I would react to a zero dose! Symptoms included severe sweating and freezing, loss of appetite, zero energy to do anything physical like simply walking. Luckily, for a change, my GP pointed out the problem and increased the dose. I might add that I'm a poor converter of thyroxine, so it's never worked properly to supply my body with energy.
Prof. Simon Pearce, Endocrine Unit, Level 6 Leazes Wing, Royal Victoria Infirmary, Newcastle upon Tyne, NE1 4LP.
Please read this information sheet carefully, so that you can decide whether or not you wish to participate in this research study. There is no obligation to participate and your health care will not be affected in any way, whatever you decide.
WHY ARE WE ASKING FOR YOUR HELP?
You have been identified from your GP practice records as someone who takes thyroid hormone replacement in the form of levothyroxine tablets. Many people who take levothyroxine need to take it for life because they have an underactive thyroid. However, recent studies in other countries have shown that up to 50% of people currently taking levothyroxine might not need to take it for ever. This is because over time some people’s thyroid gland function improves so that they might no longer need to take levothyroxine permanently. Another reason is that thyroid blood tests can become abnormal for a few weeks in people recovering from many common illnesses (e.g. the ‘flu or a chest infection). Once they recover from the acute problem, however, the thyroid tests return to normal in most cases. Sometimes people are started on levothyroxine in this situation when their thyroid blood tests would have gone back to normal without treatment over a few weeks. This means there are probably many people who don’t now need to take levothyroxine for ever.
This study aims to understand whether this is a widespread issue in NHS patients in England. The study will find out whether it is worthwhile asking people to stop their levothyroxine medication for 6 weeks, to find out whether their thyroid glands are recovered and working normally again. The results will also show how people feel after their levothyroxine prescriptions are temporarily stopped.
Large studies have shown that there is a small increase in the risk of long-term health consequences in people taking levothyroxine, which includes heart problems and osteoporosis (thinning of the bones). Furthermore, many people find it inconvenient to have to pick up their levothyroxine tablet prescriptions every month, as well as difficult to remember to take their tablets every day. For most people, there would be advantages in not having to take levothyroxine tablets every day, if they are no longer needed.
WHAT WILL I BE ASKED TO DO?
If you agree to participate in the study, you will be asked to fill in a questionnaire about your thyroid symptoms, and how your thyroid problem makes you feel. This questionnaire takes around 10 minutes to complete. Then you will stop taking your levothyroxine tablets for 6 weeks. If you take other medications, these will continue as normal. At the end of 6 weeks, you will have a thyroid blood test to see whether you need to start taking the levothyroxine tablets again or whether there has been recovery of your thyroid function. You will also be asked to fill in a second questionnaire about your thyroid symptoms and report any health issues that you had while off the levothyroxine medication.
Previous studies showed that in 30–50% of people, their thyroid may have had recovered over time. At the end of the study, you will receive the full details of your thyroid tests and have a discussion with the study team about how you feel without the levothyroxine tablets. If you feel better on the levothyroxine tablets, you will be able to restart them whatever the thyroid test results show. However, if you feel well without the levothyroxine tablets and your thyroid tests are satisfactory, you will be offered the choice to stop the tablets and just have occasional monitoring in accordance with usual NHS care to make sure your thyroid levels remain stable.
At the end of the study, we will follow information about your levothyroxine prescriptions and thyroid blood tests for a year by using the NHS electronic health records kept by your GP. This will enable us to find out how many people are able to change their treatment in the longer term.
WILL THE INFORMATION THAT COMES FROM THIS RESEARCH BE HELPFUL TO ME?
The information that comes from the study may allow a change in your treatment, and some people will be able to stop levothyroxine tablets permanently following the study. The results of this study could therefore have long-term health benefits for you, as well as being more convenient.
WHAT RISKS CAN I EXPECT FROM THIS STUDY?
When you give a blood sample you may feel faint, or experience discomfort, mild pain or bruising at the site. Some people may feel worse when their levothyroxine tablets are temporarily stopped. Because there is a large reservoir of thyroid hormones in your blood, we would expect any symptoms to come on gradually, over several weeks. You will have access to the study team (pharmacist and doctor) and you will be offered an early blood test if your symptoms are giving you problems.
Patients who take levothyroxine are entitled to free NHS prescriptions. If you stop levothyroxine as a result of the study, you may no longer be eligible for free prescriptions.
WHAT HAPPENS IF I CHANGE MY MIND?
You may choose to leave the research study and restart your levothyroxine tablets at any time. If you leave the study, we would like to understand the reasons for your decision. With your permission, the information you give us for leaving the study may still be used for research.
WILL I RECEIVE PAYMENT FOR BEING PART OF THIS STUDY?
You will not be offered payment for participating in this study. If you need help with transport to your GP practice for the purposes of attending the study, please let us know and we can book you a taxi to attend at our expense.
WILL I RECEIVE PAYMENT FOR BEING PART OF THIS STUDY?
You will not be offered payment for participating in this study. If you need help with transport to your GP practice for the purposes of attending the study, please let us know and we can book you a taxi to attend at our expense.
WHAT WILL HAPPEN AT THE END OF THE STUDY?
You will continue to receive the same standard of care as any other patient with your condition under the care of your doctor(s). Most patients with a thyroid problem will have a yearly blood test, and you will continue to receive this testing irrespective of the study results.
WHAT IF SOMETHING GOES WRONG?
If you have a concern about any aspect of this study, you can speak to a member of the OPAL study team who will do their best to answer your questions. Further contact details are included at the end of this information sheet. If you are still unhappy and wish to raise your concerns with someone who is not directly involved in your care, you can contact the Patient Advice and Liaison Service (PALS) on 0800 0320202, northoftynepals@nhct.nhs.uk or FREEPOST PALS.
In the unlikely event that you are harmed during the study and this is due to someone’s negligence (they were careless) you may have grounds for legal action and compensation, but you may need to meet your own legal costs. NHS Indemnity does not offer no-fault compensation (for harm that is not anyone’s fault). Newcastle University also has insurance arrangements in place to cover Newcastle University staff involved in designing and managing the study.
WHO IS ORGANISING AND FUNDING THE STUDY?
Chief Investigator: The doctor in charge of the study is Dr Simon Pearce, a Professor of Endocrinology. He works for Newcastle University and at the Royal Victoria Infirmary, Newcastle.
Study Sponsor: The Newcastle upon Tyne Hospitals NHS Foundation Trust. The study Sponsor has responsibility for the study.
Study Funder: Newcastle University Policy Support Fund
Who is responsible for information about me?
The Newcastle upon Tyne Hospitals NHS Foundation Trust is the sponsor for this study. We will be using information from [you and/or your medical records] in order to undertake this study and will act as the data controller for this study. This means that we are responsible for looking after your information and using it properly. The Newcastle upon Tyne Hospitals NHS Foundation Trust will keep identifiable information about you for 5 years after the study has finished
This information will include your initials and NHS number. People will use this information to do the research or to check your records to make sure that the research is being done properly. The responsible data protection officer can be contacted by email: nuth.dpo@nhs.net or by post at Data Protection Officer, NUTH, Regent Point, Newcastle upon Tyne, NE3 3HD.
Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally-identifiable information possible.
Who should I call if I have any questions?
You can talk with the study doctor, Prof. Pearce about any questions or concerns you may have about this study. Please contact him if you change your mind and decide that you no longer want to take part. His telephone number is 0191-2824636.
If you have any questions about the rights you have while taking part in this study call the Newcastle Hospitals NHS Foundation Trust Patient Advocacy and Liaison Service at 0800-0320202.
If you think you have been hurt from taking part in this study, please call Prof. Simon Pearce at 0191-2824636.
WHAT IS THE NEXT STEP, IF I WANT TO PARTICIPATE IN THE STUDY?
Please get in contact with Paul Davies by email paul.davies40@nhs.net by text message to 07961-503152. The first step will be to arrange a brief phone call to answer any questions you have and to make sure it is safe for you to stop your levothyroxine tablets.
Thanks for posting all that information, but I wouldn't trust Prof Simon Pearce as far as I could throw him .
I read somewhere that he takes Levothyroxine, maybe he should be the first to volunteer to come off his treatment and then not the allowed to resume it until his TSH reaches 10+.
Apologies if I sound a bit cynical, but this man has some strange opinions on thyroid treatment, he 's completely anti T3 prescribing.
I fully agree . There may be a small percentage of people who may have had temporary thyroid problem but given that the doctors do not rush into prescribing medication, it must be s very small indeed. This trial is unsafe because it does not exclude patients that had thyroid problems for some time and who may be tempted to participate, making their condition worse in the longer run. Blood testing after 6 weeks is inadequate, can give wrong conclusions and prevent patients from going back on Levo if the blood test shows they are ‘OK’ . Doctors who know something about thyroid condition all say that the main thing is to pay attention to symptoms; blood tests are just guidance. Speaking of risks, what about the patients who are told they do not need this medication, while, fact, they do? They may find themselves not being able to be treated ! Thus trial is outrageous, carried out but ignorant people.
I think there should be a formal response from Thyroid UK to this . I shall write to this professor personally.
I'm wondering what they are hoping to achieve when Levo costs them pennies....
Patients who take levothyroxine are entitled to free NHS prescriptions. If you stop levothyroxine as a result of the study, you may no longer be eligible for free prescriptions.
Ah.... so hopefully they will be bedbound and not able to drag themselves to the GP to beg for Levo and will have to start paying for all the other prescriptions...... 😲 really!!
I have to confess I dropped my dose of Levo massively prior to early December. I'd done a private test in October and it showed a very low TSH, not long after that my surgery started hassling me about the annual blood test I needed.
I held off as long as I could but started getting snotty letters so I droped my Levo down to 50mcg a day to try and get TSH to rise. I knew otherwise my GP would have a fit at my low TSH. I also skipped Levo altogether for the last 2 or 3 days. I didnt want them meddling with my dose.
Ironically by the time I had my NHS blood test my TSH had risen a bit to 0.33, but the biggest shock was my FT4 was 7 (12-22) and FT3 was 2.7 ( 3.1 -6.8).
I felt incredibly tired and I'm assuming my foolish little experiment shows that I for one certainly need my thyroid replacement. Not recommended.
You certainly do …don’t use TSH as your guide. Mines been 0.1 or less for last twenty odd years. Always have T3 and T4 tested. See my posts for trail of misery caused by reducing my Thyroxine to please a GP!!
I agree entirely with your observation. I think this guy is certifiable. He has had this idea in his head for some time. It sounds like other research he has been associated with. Not even half thought through.
"If you need help with transport to your GP practice for the purpose of blood tests we will provide a taxi at our expense."Just another money wasting idea... Brought to you by the NHS!!!
What a CROCK!!
Wonder how much money Mr Pearce is getting paid for this scam... Sorry... study🤔
“You have been identified from your GP practice records as someone who takes thyroid hormone replacement in the form of levothyroxine tablets”
From the start, there’s my biggest concern… How did he get hold of people’s GP records in order to identify them as someone who takes levothyroxine??? Surely that breaks all the rights of a patient to confidentiality?
In addition, there is no way on this planet that I would agree to stop my thyroid medication for even a week, let alone 6 and then not even get paid to risk my wellbeing like that!
Let’s just hope he doesn’t get many takers for this idiocy dressed up as “research”… 🤬
I completely agree that it is a question that needs to be asked.
However, it is possible that the letter gets sent out in a way that means he doesn't see who they are sent to. For example, if the invitation latter is sent out by individual GP surgeries in the Newcastle area. This sort of blind approach has been used in other studies.
All I can say is... they've not asked for mine from Darlington...but I opted out of sharing data online... and I wouldn't do this trial anyway.
When I went to endocrine at James Cook some years back ... the 'consultant' suggested cholesterol and BP medication....a) statins we know about ... b) I was stressed driving up to the James Cook! hey ho 😂
Is he maybe just sending out to GP referrals to endocrine at James Cook?
Then, I guess, they’ll have a rude awakening although, given how hard it is to get a diagnosis and treatment with thyroid replacement in the first place, I’d be surprised if anyone would want to risk that again!
I didn’t read where they do a complete thyroid blood panel BEFORE the subjects decide to stop taking their medication for this experiment but only afterwards… seems kooky to take bloods only after you have been without meds for 6 weeks … this is a slippery slope.
Patients identified from GP databases as taking levothyroxine for more than 6 months
You can take part if:
1. Patients taking levothyroxine for more than 6 months
2. Aged 18 years and over
3. No documented serum TSH ≥10 mU/l recorded in electronic health records
4. Pregnancy, breastfeeding or with a plan for pregnancy within 6 months
5. No history of thyroidectomy, pituitary disease or thyroid cancer
6. No active ischaemic heart disease, arrhythmia or other condition that in the opinion of the principal investigator would render the withdrawal of thyroid hormone unsafe
7. No dementia, active psychotic or serious mental health condition
No - they CAN'T if there is pregnancy, breastfeeding or intention to become pregnant within six months.
The wording is poor - even appalling, indeed, opposite to the intent. But if you sit there for half an hour and think about the context, it cannot mean allowing pregnancy or breastfeeding.
OMG, this is utter madness. Experimenting on people who have faith in the NHS and unwittingly risk their health and that of their unborn child is morally questionable
Ok well at least the TSH limit is relatively low for the study. When my GP reduced my T4 prescription from 125mcg/d to 100 mcg/d my TSH shot up to 10mU/l within 4 weeks, so hopefully putting most of the hypo community off even thinking about participating. It sounds like such an unnecessary trial!
But we regularly see results which suggest that in some people, TSH simply never goes up to 10. Even when profoundly hypothyroid on every other measurement (FT4, FT3, symptomatology, etc.).
Whether it has a genetic basis, or other reasons, there seems to be a sub-population in which TSH seems fairly conventional in terms of rising and falling within a narrow range but doesn't rise spectacularly.
Indeed, I have a suspicion that many of us would not see a TSH of 10 even immediately after a total thyroidectomy but that the pituitary might have to adapt to be able to produce that much TSH. Thus very high TSH levels might be related to how long the person has been hypothyroid almost as much as how hypothyroid they are.
With the ridiculous "NO T3" regime they have in the area there are going to be a large number of desperately unwell Hypo's who in their muddled, vulnerable state might actually fall for this 😳 it's like some terrible cult
Do they offer people a scan of their thyroid before subjecting them to this torture to see if there is any chance it would be able to produce hormone again??
Surely this isn't aimed at autoimmune sufferers?
I've no idea what the state of mine is but it was a long slow demise and might take considerably more than going cold turkey to kickstart it back to any kind of function!
Who are these people that get offered Levo on a whim presumably not NHS patients? I can't believe in this country there are many as you need to be half dead before they start treatment
I've just replied on the other post.... If they think this is a goer why don't they try it on people that have a functioning thyroid first? 6 weeks of Levo and then cold turkey to see how that pans out 😱
Is this a joke or have we gone back to Dickensian times... surely they could just disappear people from the workhouse or prisons to try this torture on?!
Well it can't be aimed at folks like me either who have had their thyroid killed off. Unless they can bring tissue back to life. Mel Brooks did that in Young Frankenstein.
When you hear that NHS guidelines suggest delaying treatment until TSH reaches 10 then its hard to see what the point of this experiment is? Are they suggesting people are taking Levo and having regular blood tests for giggles?
Its pretty hard getting diagnosed with hypo in the UK and most doctors insist on two tests several weeks or months apart before they'll consider treatment. Surely that would eliminate most 'temporary' or transient cases.
I bet they don't do this to diabetics, to see if their pancreas can get kick started into producing enough insulin again.
And four! Having spent years fighting for decent NHS treatment for hypothyroidism, including having to bring in a private endo., who is going to give up their treatment so lightly? Newcastle endos have been gaslighting hypo patients for at least the last 22 years from my own experience!
I never trust any scientific study that makes a definitive, pre-judged statement about outcomes before acquiring even the slightest amount of data!
"This study aims to understand whether this is a widespread issue in NHS patients in England. The study will find out whether it is worthwhile asking people to stop their levothyroxine medication for 6 weeks, to find out whether their thyroid glands are recovered and working normally again. The results will also show how people feel after their levothyroxine prescriptions are temporarily stopped."
How do they know the study WILL show this? The study is designed to try to find out whether OR NOT... etc. however, prior to undertaking the actual study, no one can know it if WILL show something. The outcomes *might* be inconclusive! Surely: The study is likely to indicate how SOME people feel... etc.
I have never published a paper that contains definitive statements like these - even when the data exists and possible conclusions are being discussed, IMHO one should always be mindful of the fact that one's observations or ideas could be skewed or erroneous - and should be open to other interpretations.
Also, "Previous studies showed that in 30–50% of people, their thyroid may have had recovered over time." - so 50-70% (a majority) have NOT had their thyroid recover... and, presumably, are likely to feel very unwell if essential hormones are restricted or removed from their bodies.
I suspect it is worded in such a way as to get funding? To further healthcare cost-cutting measures? (I even recently found a pre-pandemic study online querying whether or not masks are really needed in surgery, and the rationale was cost-cutting measures!)
The words "... and working normally again." are completely inappropriate in that even if a subject's thyroid could work normally again, it will absolutely and completely not actually be doingso at the start of the study.
A thyroid in a body being supplied with levothyroxine CANNOT work normally.
The research I have read of Pearces, this is his standard. I think this guy must have done an awful lot a..e licking to get where he has got to. Sorry if all this is too rude to stay on the forum.
Several of us on here have given up levo because we wanted to see what happened. Oh you feel great. I felt fab for 3 months then was very hypo and very ill. Tsh well into 30s ft4 and ft3 below range. I became housebound and all but bed ridden for 2 years as a result of my experiment.
Oh, many thanks for giving information about your experience of actually doing this. An actual reported experience is very beneficial (not that I would ever consider signing up to this - per my comments above 😑) - but it certainly could be helpful for others.
It seems, based on what happened to you, there's a chance - due to the timescale of the proposed study - some people might have a similar experience to you and feel great for a short-ish period of time... and the published results could come out as "Everyone can stop their Levo... STOP prescribing it NOW... as this study shows these people feel find. Job done!"
One of which could be that enough patients have within range labs without levo for the NHS to consider making it mandatory to trial being levo-free for a given period, in order to ascertain whether or not it’s needed
Apparently the latency of thyroxine in the body is about 3 weeks though obviously it must vary enormously from person to person. What a wild and dangerous thing to do, playing with peoples' lives as an 'experiment'?
My thoughts exactly, when we are given a dosage change on levothyroxine we are advised to do a blood test after 8 weeks of being on the new dose. So I would suggest that doing a blood test at 6 weeks will be COMPLETELY misleading . Not that I would for one moment suggest that Prof . Pearce would try to make his patient/ subjects unwell, of course not.
On the face of it, a bonkers premise. I think I can guess what will happen here. A lot of people will eventually get to a point where their TSH is somewhere between 4 and 9.9 and the study will conclude that those people don’t need thyroid hormone replacement even if they feel terrible. I hope to goodness they’ll test FT4 and FT3 as well but… what’s the betting they don’t??
On the other hand—and again, it depends on how this piece of research is conducted—it may produce some useful stats about how well (or not) people manage when levothyroxine is withdrawn. That’s probably over-optimistic but we regularly get posts here from people contemplating just stopping and it would be nice to be able to point them at some research showing what can happen if they do. Alas, I’m not so sure it’ll be well conducted.
Sigh. They’re gonna do this anyway. And you can be sure it’ll catch on.
The study is way too short- that makes me suspicious of the motives in the first instance. They have probably determined with the timescale they intend to run the study they will get the results they want. It is easy to design an experiment to get an answer. It would be brave to do follow ups for a year. They won’t be doing it!
You mirror my thoughts Charlie-Farley - it feels/reads like a study that has been manufactured to confirm some preconceived ideas, rather than a truly open-minded investigation into an interesting and relevant question (which is what true research *should* be).
Truly I feel medicine has divorced science and this is a continuation of a fudge started in the 60’s. You know you are seeing a debacle when they choose an indirect measure over direct measurement. I mean seriously? The NHS is an incredibly robust echo chamber. No one questions they just follow orders….. bloody scary.
Even that is presuming the truth is told. Pearse is happy to be unethical, belittling hypothyroid patients publicly. Would not trust him as far as I could throw him.
I live in the North East and was recently informed by a secretary to one of the Endocrinologists in the area that as'a collective' they have agreed not to prescribe Liothyronine. So infact denying people access to a recognised treatment. If you live in Newcastle you will possibly/probably be left to suffer unless you can pay for your own treatment?
Having recently experienced how unwell you can become when stopping your Thyroid medication. I would not wish this on my worst enemy.
I don't feel I am being overly dramatic when describing times that I felt so poorly that I thought I was dying (TSH 100+ T4/T3 below range.) This after only 3 weeks of no medication.
I will have to finish my post there as I can feel myself becoming increasingly angry by these so called Endocrinologist's!!!!! 😡 So in summary NO I won't be participating in such a study.
Well kindof, take our politicians, who bomb distant places and kill people on a whim, so the difference is, they don't personally do it. Sociopaths are people disconnected from their fellow humans, psychopaths are people who have no feelings for their fellow humans. Does that make sense?
I think you were speaking to Divine but as I am in the same area, I can answer too that I have never had a T3 test. Why on Earth would they do that here with a complete NO T3 regime? T3 does not exist in Tyne and Wear. The stats show ‘outliers’ only. I think these may be the very few people who must get it for my myxoedema coma or after heart surgery. As Divine1990 says “as a collective”, I have seen this on my GPSs website, here in Tyne and Wear.
Hi eeyore78 and arTistapple I live in Tyne & Wear and T3 was tested when I was first diagnosed a year ago. Not done thereafter and my poor conversion was identified by private tests.
It makes no sense at all does it... I've just pulled up your results... Hope the T3 trial is working out, have you managed to improve your folate and ferritin? I hope they didn't drop your T4 before starting as you were already only at 60% 🤗
Hi TiggerMe I’m getting iron and thyroid bloods redone in a week (took advantage of 20% discount). I’ll post when I get results. So far feeling hesitantly optimistic about T3🤞🤞
What worries me about this is people with Hashi's/Ord's, who often have a euthyroid period between a 'hyper' swing, and returning to hypo, which can last for quite a while. It's during that hiatus that a lot of people claim to have 'cured' their Hashi's by whatever means. And, whilst they may not need their levo during that period, it won't last forever. What would happen to them when they go hypo again? Because the incredible thing is that doctors just don't know about these swings, and often accuse the patient of 'abusing' their thyroid hormone - although quite how they would do that is never explained, but the patient is always wrong!
My opinion is that no doctor knows enough about the thyroid and its vageries to even attempt such such an experiment because, as we all know, they have their preconceived ideas about the subject and are just not willing to adjust their opinions, to learn or to admit that they could be wrong. It all sounds very, very dangerous to me. And maybe they should come on here and read for a little while before launching themselves on an unsuspecting public and subjecting them to their crazy ideas. And in particular read the posts from Johnfishman22 who was way ahead of them! (Hope you don't mind, John. )
These doctors seem to believe that thyroid hormone has the same effect as cocaine! They are of the belief that thyroid patients take thyroid hormone to get “high”. We’re just trying to survive and live our lives like everyone else. Maybe they should reach out to patients with diagnosed hypertension! Would they suggest that those patients take a hiatus from blood pressure meds? As someone mentions earlier, some of thes endocrinologists are psychopaths. Let them have their thyroids removed and then participate in the survey! It makes me mad because they think we’re idiots. They have the nerve to be conducting such ludicrous survey. Shame on the medical profession!!!
Shame indeed! But, yes, they do think we get high on thyroid hormone - especially T3! As I said to one doctor 'if only!' But it would probably be easier to obtain cocaine that T3 in some areas!
Well I reckon you've well and truly hit the nail on the head there greygoose 👍For example I recived a report from my endo appointment on Dec 27th, in it the endo as either lied knowingly, or is just unknowable about thyroid conditions.
The first lie was I was over medicating myself on t3.... Ha, ha😄... Based on this.... I'm on 20micrograms T3 split in to 10s... My TSH was 11.58....T3 4.7)..over medicated..🤷♀️ Where the hell does she come up with that?
I'm afraid I'm going to go out on a limb here, and say the money would be better spent on training up endocrinologist 🤷♀️... There I've said it👏
By the way I may have an endocrinologist appointment very soon, gp mentioned it could be Newcastle, think I may pop in to see Mr Pearce, sit him down and give him my long story on thyroid hormone replacement 💪. Ask him if he knows the pit falls of doing this on someone with an auto immune thyroid condition as you mentioned, and did anyone see anything in that paper that said... THIS TEST SHOULD NOT BE OFFERED TO ANYONE WITHOUT A THYROID!.. 🤷♀️ I might have missed it.. 👀
If they were to start reading on here, they would very quickly realise that they really don't need to do any further studies given that:
a) it's extremely difficult to get a diagnosis of hypo because doctors just don't want to give it
b) doctors almost always want a retest three months later no matter how high your TSH is nor how low your thyroid hormones - and they sometimes want retest after retest after retest in the hope that it will just go away! It doesn't.
c) if the thyroid is damaged in any way it cannot regenerate
d) taking thyroid hormones daily is absolutely no fun for anybody, it does not give us any sort of high or thrill, with brain-fog it can be difficult to remember, the excipients in the pill often disagree with us, it can be very difficult to fit in food, other medication, supplements, etc. - and don't get me started on the inconvenience of having to go for blood tests! - we would definitely NOT be taking if if we didn't have to to live!
If any of the results of this 'research' appear to go in his favour - because he is obviously looking to get as many people off thyroid hormone replacement as possible - we will know for sure that he has fudged the results, cooked the books, cherry-picked the findings, because it's just not possible that so many people could be on thyroid hormone replacement without needing to be. So, watch it, Simon, we've got our eyes on you!
Trouble is, if he goes, there are plenty more ready to take his place. There aren't many doctors on our side, most of them want to prove that we're drug-seeking hypochondriacs.
I have consulted a private endo who trained under Pearce and I fear you are correct. I definitely felt ‘the cultish’ behaviour that someone else has referred to on this very post somewhere. Brainwashing is alive and doing well in NHS endocrinology.
What you had to say may be a good point, however some of the other comments are very ignorant.
The supposed premise is that 30-50% of thyroids self regenerate after being diagnosed, and if that is so, many people don't need to take meds for life.I find this interesting, he also obviously finds it interesting ,and how do you answer such a question? By a study such as the one he suggests?
He's not Hitler.
My doctor told me i had it (hypo) for life.I couldn't understand that idea and protested, if you can reverse type two diabetes this must be curable.No it never ever comes good he told me.So i think this is a terrific question with huge relevance.Why is everyone so angry?
Not really comparable most type 2 diabetics are in that position due to modern diets/ lifestyle being overweight and underactive and can reclaim health when they get to a healthy bodyweight... Hypo's generally have damaged thyroids, dysfunctional HPT axis or maybe someone nuked their thyroid or cut it out!
Taking T4 for any length of time will likely shrink the thyroid further so to expect it to suddenly jump back into active service is incredibly unlikely!... perhaps if they limited this study to people that have been on it for less than a year and possibly it was bought on by an acute virus or other sudden trauma?
*IF* the proposal had been phrased in an open and thoughtful manner that truly reflected an unbiased approach to investigating a specific question, then I think the responses would have been more positive... BUT, in my opinion, the specific text of the research proposal (quoted directly by helvella and from which I took my illustrative quotes) make definitive statements about what the study will show. Based on the scientific world in which I worked, this does not constitute good science and rings very loud warning bells for me!
To your specific point about "Previous studies showed that in 30–50% of people, their thyroid may have had recovered over time" - it says may have... so, apparently, even those studies are not conclusive (but better worded since they're not making a definitive statement).
If the wording of the proposal had been something along the lines of 'This long-term (>12 months) study aims to investigate the medical outcomes in patients identified with residual thyroid function, and who have an intact thyroid, who take Levothyroxine (T4) hormone replacement when the T4 replacement therapy is gradually reduced to zero. The study will measure physiological responses, such as THS, serum T4, and serum T3 levels, along with patient self-reported symptoms'... or words to that effect, then fair enough... [NOTE: in this context, 'will' can be used as it is describing actions that WILL take place during the study] - but it doesn't. That's certainly why I'm speaking up, anyway.
Eric- with no evidence whatsoever i do suspect that i might reverse my hypo.And my none scientific take is that other things may affect the thyroid- like copper.
Someone said thyroid does not regenerate, i googled it and according to what i read it does.
I am fairly new to this - over a year- i came on here and read about t4 t3 etc and then when i had my 8wk check to titrate was shocked that only TSH was looked at. Like most on here i was irate, but i've calmed down.I no longer think that all the doctors are evil.The women do seem to suffer more than we or i do, so i don't really know what it feels like for thyroid problems to consume my life.
To begin with the info i got here was eye opening.But now i do think some of it is, to use a misoganistic phrase 'hysterical' and therefore unreliable.
Dr Pearce may well be a crap scientific paper writer, a t3 meanie, and all round bad egg, but the strength and depth of the opposition on here is quite amazing and does not seem, unless we are all doctors to have any rational basis.
If this guy really is that wrong i think this thread has kicked up enough of a stink that BMJ or similar would pick it up and put some of the points to him.Or Daily Mail.Someone send them a link.
I have read that the thyroid can grow back in some circumstances, although I don't know what those circumstances are. But I have also read that the regrown thyroids don't work very well at all - certainly not as well as a healthy thyroid would.
You seem to think that some of us are living up to the "hysterical" tag. But given the way patients are treated and talked to in GP surgeries and Endo departments you would understand the depth of feeling here. Insults and being patronised are common. So many of us (females) go to doctor appointments with a man in tow because we get treated more politely - but it is also common then for the doctor to only talk to the man.
I mentioned in some of my replies to this thread that I think I have Secondary Hypothyroidism. My TSH is far too low to stimulate my thyroid sufficiently to give me sufficient thyroid hormones for good health. But since doctors use TSH as their only yardstick for deciding on whether to diagnose hypothyroidism it means that Secondary Hypothyroidism can't be diagnosed. And if someone brings it up with a doctor they just dismiss the idea with a wave of the hand and say "It's very rare" and refuse to discuss it further.
Another factor is that if someone has a Free T4 of 12.5 with a reference range of 12 - 22 doctors think this is fine. But suppose that the patient only feels well with a Free T4 of 19 - 20. With "anywhere in the reference range" medicine they have major problems getting a diagnosis of hypothyroidism.
Another factor is the belief by many doctors that thyroid hormones are addictive and act like cocaine or speed. This is utter nonsense. We want as much T4 and T3 as healthy doctors with healthy thyroids. We aren't drug addicts.
If a hypothyroid patient is on the right dose of their thyroid hormones and they feel well but their TSH is below range it is quite common for doctors to reduce the patient's dose and make them feel unwell again. Why is this acceptable?
The active thyroid hormone required by every cell in the human body is T3. Doctors think it is dangerous. And yet the Yellow Card data for T3 when I last checked (7/6/2023) shows zero deaths since 1967 when the system was first created. The fear of thyroid hormones in the medical profession is rampant.
From being first told that my thyroid was "borderline underactive requiring no treatment" to actually getting my first prescription for Levo was 23 years. Unfortunately I had extremely low iron at the time of that first prescription and couldn't tolerate Levo. I absorb iron very poorly and it took seven years of improving my iron for me to tolerate Levo. And, sadly, many doctors appear to believe that everyone tolerates Levo without exception - an attitude for which there is no evidence.
So, if we are hysterical, then we are justified in being so because thyroid treatment for many of us has been so sadistic, for so many years. At a time when I should have been in my prime (teens, 20s, 30s) I was in pain, lacked energy, suffered brain fog and had other symptoms which I could have been spared with the correct treatment.
I hope people use me as an example and never come off levo cold turkey. I will figure this out though and have advice for those that do go off without knowing the consequences.
I’ll stop my medication as I feel s*** on Levothyroxine now - as long as they cover my salary when I lose my job which I’ve held a long time but gone downhill recently since my thyroid packed in and my weight increased. I do need to cover thousands in council tax, energy bills, water, insurance etc so would like some assurance of how to do this.
I’m sure that they have this all in hand, can’t be that stupid can they.
Stupid doesn’t even begin to cover it when you have group think. They all go trotting down the well trodden path of decades of flawed science.
When they would rather sample an indirect measurement (TSH) over direct measurement of thyroid hormones and looking at symptoms you know you are on a loser. Virtually a whole field needs to revisit the flawed science that underpins current understanding. All those EGOS! What is the likelihood?
There IS good science but it is held on the periphery. What will it take? Think of the potential for litigation if they did actually admit their folly. I think there will be an imperceptible creep towards a different approach to avoid this scenario. Personally I’d love to see a class action and the ‘balloon to go up’. 🤔
The whole thing looks so vague and badly planned, I wonder how the discharge back to GP ‘care’ then goes after a few weeks …. If it is going ahead it needs a complete rewrite first to make it actually safe.
Hmmm I don’t think so we seek knowledge- the vast majority of clinicians in the NHS and beyond simply adopt protocols without question. There can be some very lively debate on here from time to time- that is not a characteristic of group think…. 😉👍
2. No mention of risks or benefits in the trial registration as above … (see further comments below)
3. No mention in the detail of testing TSH & FT4 at the start of the trial to measure & compare the difference in levels.
4. Prior expectation that 500K of 3M patients on Levo may not need it
5. Effectively no legal recourse except at own expense if harm is caused.
In addition, just curious why ethics approval comes from a Scottish institution with a hospital ward level address???
*************
Ethics approval(s)
Approved 01/06/2022, West of Scotland 4 (Research Ethics, Ward 11, Dykebar Hospital, Grahamston Road, Paisley, Scotland, PA2 7DE, United Kingdom; +44 (0)141 314 0213; WoSREC4@ggc.scot.nhs.uk), ref: 22/WS/0067
*************
And were the comments in the patient info sheet provided during ethics approval consideration?
**************
WHAT RISKS CAN I EXPECT FROM THIS STUDY?
When you give a blood sample you may feel faint, or experience discomfort, mild pain or bruising at the site. Some people may feel worse when their levothyroxine tablets are temporarily stopped. Because there is a large reservoir of thyroid hormones in your blood, we would expect any symptoms to come on gradually, over several weeks. You will have access to the study team (pharmacist and doctor) and you will be offered an early blood test if your symptoms are giving you problems.
Patients who take levothyroxine are entitled to free NHS prescriptions. If you stop levothyroxine as a result of the study, you may no longer be eligible for free prescriptions.
**************
This key statement
“Because there is a large reservoir of thyroid hormones in your blood, we would expect any symptoms to come on gradually, over several weeks.” should have been presented for ethics approval given the short 6 week duration … was it?
A perfect summary MikeM46 - a great synopsis of some of the key flaws in this study.
They really don't seem to have asked an open question (or questions) and then devised an open-minded investigative strategy to address the question(s).
At this section regarding eligibility for taking part
************************
You can take part if:
1. Patients taking levothyroxine for more than 6 months
2. Aged 18 years and over
3. No documented serum TSH ≥10 mU/l recorded in electronic health records
4. Pregnancy, breastfeeding or with a plan for pregnancy within 6 months
5. No history of thyroidectomy, pituitary disease or thyroid cancer
6. No active ischaemic heart disease, arrhythmia or other condition that in the opinion of the principal investigator would render the withdrawal of thyroid hormone unsafe
7. No dementia, active psychotic or serious mental health condition
8. Ability to give written informed consent
*****************
I cannot understand why
Item 4 is included since it surely should very largely be an exclusion factor. If anything it should read quite the opposite, i.e. …
“Not pregnant, breastfeeding or with a plan for pregnancy within 6 months.
Hopefully quite the opposite had been implemented to what otherwise seems a mental aberration!
Offerred one of thier stupid TSH tests if they feel ill rather than having their hormones automatically reinstated.What if your TSH is below ten? Where did this idea that the thyroid can just recover come from. I have never heard of that before. What a horrible study.
Hi Tara, we need to put it out there that patients , are asked to do this should Not do this ! A) 6 weeks is not long enough to off medicationB) this trial is unethical and being done with an ulterior motive in mind as it says so in the information !
C) it is basically going for women who have had a TSH of less than 10 when they were started on levothyroxine.
D) this goes to show that TSH should not be used as a diagnostic tool for thyroid issues.
We need to warn all thyroid patients NOT to do this with out consulting an endocrinologist. This man is very dangerous ! I personally would like to know who authorised this study and how he got his study authorised! I would bet that Dr.Kristine Boeleart is also supporting this ! Since her recent take and advice on prescribing T3 is absolutely abhorrent !
Yes, yes, yes! Around 70% of thyroid sufferers are female thus it must be obvious even to that idiot in Newcastle that there are large differences between male and female sufferers, even the difference in size of the thyroid gland in males and females should surely give this twit of a professor a clue then again, maybe not.
I don't think I have primary hypothyroidism. If I have Hashi's or Ord's it is quite mild. Just once I've had Tg antibodies a smidgen over the range, but TPO antibodies (the only ones the NHS will test) have never been over the range.
I think I have secondary hypothyroidism i.e. my problem is not likely to be with my thyroid but is most likely with my pituitary which seems unable to produce TSH in sufficient quantities to stimulate my thyroid enough for good health.
My pituitary is completely flat (a condition known as Empty Sella or Empty Sella Syndrome), but nobody has tested me to see how well it produces any of the hormones it is supposed to produce. I have been told that I was most likely born with the pituitary problem.
I was first told my thyroid was "borderline underactive" in 1990 but that it required no treatment. It was 23 years before I got my first prescription for Levo and even that was given extremely reluctantly. My TSH has never reached 6. But my Free T4 has been as low as 8% through the range and my Free T3 was 11% through the range. My quality of life has been really low throughout most of my life. I never had the energy that other kids had.
I have come across people on this forum who had levels of Free T4 and Free T3 similar to mine before treatment. But in one case the person's TSH was about 10 and in another case it was about 30. Mine was under 6.
Since I know that my TSH is not trustworthy I decided once I started treatment and I had learned something about how the thyroid worked that I wouldn't rely on doctors and started treating my self just a few months after I got my first prescription for Levo. I couldn't face having to beg and plead for more Levo month after month after month for the rest of my life.
Nothing would induce me to stop taking my thyroid hormones for six weeks.
Just a question.... would they ask people to stop blood pressure or insulin or heart medication etc. for 6 weeks?I doubt it, because that would have serious outcomes.
So, why do they think that people with thyroid problems can just stop their meds for 6 weeks without risk?
I am convinced that misogyny is at the back of much of the poor treatment of thyroid disease. I'm sure I read that sufferers are 90% female. Women are largely disbelieved when they say they suffer from fatigue or tiredness or pain. I imagine many of us have the acronym TATT (tired all the time) plastered all over our medical records. It is also true that women are prescribed things to calm them down when they are in pain, whereas men are prescribed pain killers.
Men who suffer from diseases seen as largely "women only" will often suffer the same prejudice as women do.
And as a result of these beliefs about women being hysterical, attention-seekers, drug-seekers, depressed, anxious, etc, any condition suffered exclusively by women or mostly by women is not considered to be serious, and getting believed is a Herculean task.
But high blood pressure or heart problems generally or diabetes are seen as something suffered by men and are therefore taken extremely seriously.
Absolutely! How many times do I come across references here to the way female sufferers are accused of hysteria, 'it's all in the mind' etc. Perhaps a study of endos gender is in order? My bet is most are male.
I presume what they mean by thyroid returning to normal is that blood tests are nolonger out of range. Ill health and symptoms ignored as would be benefit from thyroid hormone replacement. They says studies have been done in Europe. I presume poor souls in europe have had thier thyroid hormone removed as a result of taking part in studies. Off all the reasurch that should be done they come up with this nonsense.
Yes, when I was judged to be hypo, it was purely on the basis of a blood test and since then (15 yrs ago) I have never, ever been asked what my symptoms are. This is tickbox 'medicine' gone crazy.
If any such studies have been done, they've been very quiet about it. 'Europe' is such a vague term - which country in Europe? There are 44 of them! So, I would be inclined to believe that this is just another... extention of the truth? Or a down-right lie, take your pick! In any case, I would want to see these studies in black and white before I would believe in them.
I know it was mentioned in the NICE comittee work on Thyroid Management: assessment and management performed in 2019
"The committee noted that a TSH level of 5 to 10 mlU/litre might return to the reference range without treatment in around half of people, whereas a TSH level above 10 mlU/litre is less likely to do so and is more often associated with symptoms"
I would want a lot more detail before I would take any notice of that! For example, what were the FT4/3 levels when the TSH was 5? I think this is more wishful thinking on the part of doctors than reality.
But what has NICE got to do with studies done in Europe?
And if you have Thyroid antibodies? The NHS doesn’t test for antibodies as standard but I know mine are off the scale from private blood tests. My thyroid will never recover! Why don’t they offer this test first before subjecting folk to the trial?
Is this the guy who thinks thyroid tiredness is the same as working a night shift in the NHS? (GP update training on Thyroid UK) I work nights as a Midwife and can confirm the tiredness is not comparable. I’m surprised this trial has passed any ethics committee.
'I’m surprised this trial has passed any ethics committee.'
Excellent point. The Helsinki Doctrine on Human Experimentation.
The Declaration of Geneva of the WMA binds the physician with the words, “The health of my patient will be my first consideration,” and the International Code of Medical Ethics declares that, “A physician shall act in the patient’s best interest when providing medical care.”
4. It is the duty of the physician to promote and safeguard the health, well-being and rights of patients, including those who are involved in medical research. The physician’s knowledge and conscience are dedicated to the fulfilment of this duty.
This is outrageous. I once stopped my levothyroxine as I thought very wrongly it was having a negative effect. Within 10 days I was in a real mess and my TSH had risen to 29 (0.35-5,50). I now know the huge importance of always taking thyroxine medication once you are diagnosed as needing it. My problem is poor conversion from T4 to T3. Once T3 was added daily I got my health back.
Well it’ll likely be a small study. People on the ITT group are just as critical.
This section from the blurb - ‘Large studies have shown that there is a small increase in the risk of long-term health consequences in people taking levothyroxine, which includes heart problems and osteoporosis (thinning of the bones). Furthermore, many people find it inconvenient to have to pick up their levothyroxine tablet prescriptions every month, as well as difficult to remember to take their tablets every day.’
So admitting that, why is he so anti-T3? (So I’ve heard) Has he brought this bold statement out purely to justify his study? Am I cynical to read ‘end their free prescriptions’ in ‘people find it inconvenient…and difficult to remember ‘?
His alternative to T4 looks like no medication at all - and I’m willing to bet that will mean no more monitoring. Do doctors no longer take the Oath of causing no harm? God help Newcastle.
In view of that statement, I really think that one day those left to languish unwell on thyroxine and denied T3 (and those who have to buy it on the internet ) will sue the NHS aka Mr Bates style.
This is terrible. I'm one of those without a diagnosis of hypothyroidism but prescribed thyroid hormones due to tiredness post partial thyroidectomy. I also believe I've had undiagnosed Central hypothyroidism since I was a teenager or possibly earlier (now 50+)
I'm still titrating up my levo but as soon as I was prescribed hormones the difference I felt even only taking crumbs of a tablet was immense. So I knew then it was the right thing for me to be doing as I was initially very nervous after having been very low in FT4 levels since a teenager.
If they try to stop my levo (as an outcome of this 'research') I'll resist but if I have to I'll source my own supply alternatively via private means.
So... Charlie-Farley - in all seriousness, I thought this after reading a piece about the ITV mini-series that included quotes from Gwyneth Hughes, the series creator. She said: “All of us on the team have emails full of people going, ‘I’ve got a story for you – and if anything, it’s worse than the Post Office’,” Hughes says. “I think a key reason it has been a runaway success is that an awful lot of people in this country feel, in their own small way, as though they have been going through something similar. They feel like those people hanging onto the wretched Horizon helpline, which they used to call the ‘hell line’. They feel unheard.” [weekend Guardian online, my underlining].
I did think about posting on here to see if there was interest in reaching out to her about the (mis)treatment of so many thyroid (both hypo- and hyper-) patients. I don't feel best placed to be the person to do so, however, as (currently 🤞) I seem to be one of the lucky ones who has a receptive GP. I read of some many horror stories on here and my heart goes out to folks in dire straights!
This is what happens ….. please observe the LAST TWO entries on this table (photographed when the medical professional left the room for five minutes - sorry not sorry).
30th January 2017 - told to STOP TAKING THYROXIN and we’ll test in 6 months.
26th July 2017 - oh look, maybe you do actually need thyroxin for the rest of your life, those results don’t look too good..(I felt pretty rough too!)
Hemithyroidectomy due to goitre was in November 2015. I was told the remaining half would probably function well enough without medication. No. It is diseased and does NOT function properly!
Knackeredoldhag, I have removed your image because it clearly shows some personal identity information, which is never a good idea. If you can crop that off, do feel free to add the edited version again.
I have heard this particular Doctor present training to GP's online. I found his remarks about Hypothyroid patients very distressing to listen to, particulary around insinuating that our symptoms are often all in our heads, and we are unique class of patients in seeking drugs we dont actually need, and very anti T3. I agree with another user, I would not trust his motivation or clinical judgement.
He makes us sound like crack cocaine addicts, I can't help feeling there is some deep seated misogyny here, as thyroid disorders primarily, but not exclusively, affect women.
Does he feel the same way about erectile dysfunction patients I wonder, are they a unique class of patients seeking drugs they dont need? The NHS supplies Viagara, doesnt it?
I often think of Viagra (and similar) when compounds (be they drugs, replacement hormones, or whatever) that are needed by females are discussed in a negative light - I wonder if the conversation would play out in the same way Sparklingsunshine
I'm usually more of a lurker than a poster but this has boiled my blood this morning!
This bit is a particularly spectacular brand of bull crap:
"Another reason is that thyroid blood tests can become abnormal for a few weeks in people recovering from many common illnesses (e.g. the ‘flu or a chest infection). Once they recover from the acute problem, however, the thyroid tests return to normal in most cases. Sometimes people are started on levothyroxine in this situation when their thyroid blood tests would have gone back to normal without treatment over a few weeks. This means there are probably many people who don’t now need to take levothyroxine for ever."
I'd like them to show us even one patient who managed to get prescribed Levothyroxine after a single raised TSH test post-illness.
Seems to me most people (on here at least) have done battle for months, if not years, to get prescribed!
Perhaps the reason for this rabid mysogyny is because 70% of sufferers are female? Have we not moved much from Victorian times, when 'hysteria' was the common diagnosis for females? Apparently not. How depressing.
We certainly do not need trials of this type but better educated medical profession ! It takes weeks, months , and even years to optimise your thyroid levels! This trial is not to help patients but to reduce the cost of prescribing this medication at the expense of our health
"Previous studies showed that in 30–50% of people, their thyroid may have had recovered over time."
This doesn't make sense. If the thyroid gland is heterogeneous once on ultrasound, it means abnormal cells. Heterogeneous is caused by an autoimmune disease, as are Hashimoto's and Grave's disease. So in other words hypothyroidism and hyperthyroidism.
Scientifically, the thyroid gland is not considered a regenerative organ.
How then can the thyroid recover???
Do they only look at blood tests so much and don't know physiology?
That's another brainwashing. I don't know what they want to achieve. What they are trying to do with this research is just save money on hypothyroid people because it is less serious than hyperthyroidism.
If I stopped thyroxine for just one week, I would be sick and have heart problems right away despite my thyroid hormone fluctuating between normal and subclinical levels. I don't need to create more health problems than I already have and put myself at risk.
And why is this couched as though it’s all about the thyroid? What about those of us who have secondary hypothyroidism (which I suspect is under diagnosed because it takes more effort to diagnose), the ones whose pituitary glands don’t send the message?
My comment was regarding the reason for this trial, which is stated in the participation information sheet.
"However, recent studies in other countries have shown that up to 50% of people currently taking levothyroxine might not need to take it for ever. This is because over time some people’s thyroid gland function improves so that they might no longer need to take levothyroxine permanently."
So my deduction is that this is for a patient on thyroxine who has a primary cause of hypothyroidism. If this study had included patients with secondary hypothyroidism, the information sheet would not have mentioned the thyroid gland.
P. S: I am sorry if you were undertreated. I have a primary cause of fluctuating subclinical hypothyroidism with negative antibodies and would not have received levothyroxine treatment from my gp without the guidance NG145. I had to complain a lot, pay for private blood tests and thyroid ultrasound (just to prove them that I have a thyroid issues with symptoms) , because according to the endocrinologists, I do not have a secondary cause of hypothyroidism from the pituitary gland. Endocrinologists very willingly asked twice for MRI of the pituitary gland. Seeing nothing abnormal, the endocrinologists were not interested in me...
Also, my fight with doctors didn't end with getting levothyroxine from a gp. I have had recurring mild thyroid eyes symptoms and constant Galactorrhea for 19 years and still have to write complaints because there is no further investigation into the cause and therefore no treatment. As for my thyroid eye symptoms, they don't see that it reoccurs often and lasts for few days, and at appointments that are months apart , my eyes are in normal shape. So I need to prove everything with photos.
I think a lot of us have secretly experimented, cutting down on Levo to see if we can do without. I certainly have. No one wants to take it unless they have to.
I'm trying to get funding to investigate stopping doctor's salaries for a period of six weeks. This is a trial to see how they get along and whether patient outcomes are affected or whether no one actually notices. If you think your GP would be interested then please contact us. We're particularly hoping to enrol endocrinologist as there is some evidence that they're not really serving any useful function and the health of patients might actually improve without them.
PS I’m subclinical, depressed, attention seeking (not) post menopause female with a chronic rheumatoid AI condition but have managed to be med free for that for over 45 years so why would I seek meds for something new now!
I'm not sure any of us here owe any wellbeing to a GP or even an Endo if we hadn't harangued them with the knowledge we have learnt here to gain what we need?
Could it be personal career jealousy? GPs get paid more than endos. Dr. Google says most endos earn about £95k with just NHS work and GPs up to £140k. One of Pearce’s previous research papers was about ‘mocking’ GPs and other medical staff about their ‘lack’ of knowledge re: hypothyroidism. I wonder if that paper really was about him taking ‘power’ over GPs and set this ball really rolling, so that GPs are ‘allowed’ to do next to nothing for their hypothyroid patients. It probably suits most lazy or overworked GPs. Now reaching for his absolute power, where he can totally abuse hypothyroid patients, without fear or favour. No GPs standing up for us at all, although that’s pretty much the case already!
He certainly shows his true colours without fear. Now he is so revered, Professor Pearse, who the hell will stand against this ….!
I definetely won't be participating . I was diagnosed with autoimmune hypothyroidism in 2001 . During the last 12 years my levothyroxine dose has been reduced twice both times the doctors didnt recognise the symptons of undertreated hypothyroidism. I became seriously ill and needing hospital treatment. Health and life affected for years afterwards.
Should Thyroid UK be getting involved and send a horrified outcry about the ethics of this appalling study? How do we warn this people many who are already poorly treated that are being prayed on??
Do we need a call to arms to bombard these dangerous folk with emails?
My hubby is hypothyroid and his “care and treatment” is non existent until he gets worse. So that’s my benchmark. He is getting a private consultation in March.
What I sense is 6 weeks of torment, followed by more torment trying to recover followed by potentially more torment if the experts think you did ok on no treatment. Sound like a lose lose situation!
Good god, it’s all been said above so I don’t have much to add other than this paragraph specifically made my blood boil:
“Furthermore, many people find it inconvenient to have to pick up their levothyroxine tablet prescriptions every month, as well as difficult to remember to take their tablets every day.’”
So what, that’s a reason to take people off a drug??!!
👏👏 Yes, Hypo people struggle to do a lot of functional things as they are so often under replaced and need better care to insure they have functional levels of active fT3 in their poor starved systems! 😲
Anyone who takes a regular medication on prescription has this inconvenience, anything from BP meds to antidepressants. Ordering it in time, collecting or getting it delivered from the pharmacy and then taking it as required. It just becomes another job that you have to do. I've been taking regular meds since I was in my early 20's. Its just second nature.
Most people adapt perfectly well. It makes it sound like we're too stupid to be trusted to do it. I wonder if they are aware of how patronising they sound?
Should we then just suddenly stop everyone's regular medication, just because its a bit of hassle?
Yes very odd thing to say, why should hypothyroid patients find it so burdensome to remember to get their prescription every month from pharmacy, or remember to take it daily ( unless of course they have hypo brain fog from undertreatment), when diabetics, hypertension etc etc patients manage it quite effectively?
It’s just another vague pointless remark/dig at these poor pathetic patients to slyly let us, and anyone connected in any way with hypothyroid patients (particularly medics) know we are simply a pain in the jacksie.
As this study seems to be going ahead, my only hope is that they wake up to the fact that most if not all people in the study really need their Levo and become very unwell if they stop taking the hormone.
Maybe its going to take this sacrifice by unwitting hypo people to get it through their thick skulls that treatment isn't optional. and they will shut up once and for all.
Having put in my tuppence worth on the what madness is this side, I had a thought. Is coming off levo any different to coming off carbimazole? I was made to come off carbimazole 3 times and relapsed each time. This was just to see if the thyroid would resume normal production which is the same aim as the study.
For example, TSH might not rise as quickly, or as high, as necessary within the six weeks. After all, the pituitary has only been required to produce small amounts of TSH for as long as the patient has been on near-replacement dosing of levothyroxine. In order to get the thyroid producing enough thyroid hormone, it probably has to rise significantly, and do so quickly.
Same here. Each time I came off carbim I had been stable for a short while, and was pretty upset to have to come off it (I was pretty compliant 'dr knows best ' then!). Every time was awful and a major battle to get back on carbim. I'm more militant now! Would never agree. Adding to the pressure was the scaremongering about carbim potential side effects.
Seems to me that the difference is that Graves' is known to go into remission/burn itself out, but the only way you will know if it has is to stop the carbi. Whereas a thyroid that is hypo, either because of Hashi's, or a pituitary malfunction, or other, is know not to regenerate or recover of whatever. And all this business about previous studies showing blah blah blah is just the noise of the wool being pulled over our eyes. In other words, I don't believe a word of it!
By the way, were any links or references given to the 'studies'?
Interesting and, on the surface, looks odd. But maybe they just had a bit of space there to accommodate this ethics unit? Or the person in charge is a mental health specialist?
From memory, I think there is a forum member who gets T3 prescribed from the NHS from her mental health consultant, and he/she highlighted in a post that mental health consultants can prescribe T3. It may be that Dykebar Mental Hospital has patients on t3 only or levo/T3 combo? It will be the T3 which makes the difference not T4 levo.
I wonder if the purpose of the study may be to exploit the occurence of T3 making a difference to mental health patients when T4 doesn't. These patients may be ameniable to stating that T4 levo does not benefit them, as it is T3 that benefits them. I doubt the study takes account of, or asks about T3. Simon Pierce, per forum members is anti T3, bizarrely-but the study is not about T3. He seems to have already been successful in largely banning NHS T3 prescibing. He is now launching an assault on T4 Levo subscribing.
To successfully recruit patients likely to have had no benefit from T4 Levo perhaps he is hoping to use the Mental Health sector" to twist the data in the study and muddy the waters.
I have been having a look on the internet and it makes bad reading re. Dykebar Hospital. There is an article from "The Gazette", dated 21/7/22, entitled, "Dykebar patients given mind -altering drugs without legal authorisation, says watchdog". The watchdog was the Mental Welfare Commission".
It states that "staff on the Arran Ward at Dykebar Hospital were critised in the commission's latest annual inspection after certificates authorising treatment under the Mental Health Act were found to not correspond to the medication being prescribed. This meant there were instances where psychotropic medication was being given out without the legal authority to do so. Other certificates, including ones providing consent to treatment, were found to not be in place where required, despite recommendations made by the commissioner last year to organise them better. Inspectors also found that advance statements, which are written by someone who has been mentally unwell and set out the care that they would like or not like if they become ill again in the future, were not being encouraged. They made a recommendation last year to promote them but said that, on speaking to ward staff recently , it remains unclear as to which patients have them and which do not.
Dykebar was a former Mental Asylum which is now in a state of disrepair with some windows boarded up, and some buildings with rooms which have no windows. It has dementia, alcohol and drug abuse, and general mental health in -patients, some of which are expected to be there for 5 years. It deals with compulsory orders for detainment, and the Mental Health Tribunal for Greater Glasgow Health Board seems to be there. A controversial house building application from 3 major housebuilders has just been granted for much of the surrounding ground which was owned by the NHS. It is expected that the house building will take around 8 years to complete, and in-patients will be subjected to considerable noise as a result. (620 homes)
Dykebar does not believe that adult ADHD exists, per someone on the "I Want Great Care" site.(15/8/2019)
In February 1992, there were 437 in-patients in Dykehead Hospital, some of which are described as "acutely disturbed".
Edit:Greater Glasgow Health Board have a deficit of £190.9 million per a statement 10/7/23 made when Greater Glasgow were taken to court re. a suicide at Dykebar, so looking to save money.
Edit: On further reading, looks as if West of Scotland Research Ethics Service at Dykebar covers applications for the entire U.K. for all manner of things!
Thank you, I will be very interested in their response. The previously named Endo got me to do 6 weeks without Thyroxine, he did not mention it was part of a trial. Too busy denigrating Support Groups and patients. Six months later and I am still not back to where I was.
Goodness - given that the study, allegedly, started in December 2021, I hope you weren't a "data point by the back door"... but, given that you're still not back to where you were, I imagine your poor outcome would be quickly deleted from the data... (sorry - data manipulation is a terrible assertion based on no evidence, and very unprofessional of me... but the whole thing has REALLY annoyed me!).
Hope you are able to return to some level of better health 🤗
My friend is allergic to every type of thyroxine she has tried, she has no thyroid at all. Now she is on the lowest dose just to keep her going and even that is making her extremely ill.
If she can't tolerate levothyroxine then she should try T3 only.
I couldn't tolerate Levo for several years after I started it, so I took T3 only. I also experimented with NDT but it seemed anything which contained T4 was intolerable for me.
What improved matters for me was optimising my iron and ferritin as much as possible. After 7 years of no tolerance of T4 I can now tolerate T4 and T3, and have done for the last three years.
”Yes. It was as not good . It made me feel like had dental injection all down left side face, neck and arm. A person in thyroid group said it should be titrated slowly.but was given 20 mcg straight off. The thought was at 200 pounds a month it was done deliberately v. Dr ***** prescribed it and I asked if it had been too much, and was told I prescribed correctly. Dr ** said he didn't think it work anyway. Dr ***** told me the cost and said they were being ripped off as it cost pennies to make”.
There is nothing to stop the NHS from casting their net wider and looking for cheaper T3 elsewhere, but for unknown reasons they refuse to do it.
I've heard one possible suggestion as to "why", but whether it is accurate I don't know.
The NHS is such a huge market that they expect manufacturers to come to them and offer their wares. The manufacturers have to jump through loads of (expensive) hoops before the NHS will even consider buying their product - and many of them won't do it because of the expense.
The idea that the NHS needs to look at products themselves is apparently not even considered.
I had a low heart rate at 56. It measured 52 at the guest house after doing breakfasts and glugging coffee to get through the service. Diagnosed by a guest - only grudgingly confirmed by a doctor. Then ‘topped up’ with 25ug of levothyroxine for6 months (yes they really had not a clue) and made even more ill. Had to stop driving, couldn’t think properly, couldn’t sleep lying down (heartburn) could go on. Thankfully, small blessings, we were in lockdown when I crashed otherwise we could have well lost business with me being incapacitated. It was a race to get well enough to reopen in the May. Private bloods showed high antibodies and they have been consistently above range. Those antibody tests may well prove invaluable going forward if they do try to routinely take people off medication to ‘see what happens’ in the future.
I may be a cynic, but as well as the doubt around the lead in this proposed trial, there is the issue that those of us under 60, on thyroxine in England pay zero prescription charge, which I’m sure irks the government, just a thought.
I have no doubt it is driven by economic concerns not human health. If they did adequate testing in the first place this study would be redundant before it even started.
The NHS test is inferior and not fit for purpose- they should fix that first!
No documented serum TSH ≥10 mU/l recorded in electronic health records
Which might superficially look like they are avoiding anyone who was severely hypothyroid.
But it could actually have the effect of targeting those diagnosed before the arbitrary TSH > 10 requirement was put into various hypothyroidism guidelines.
As well as any who were diagnosed due to concerned GPs going ahead despite not hitting 10. That is, where the GP was convinced by presentation and symptoms rather than TSH > 10. Maybe they also had low FT4 and FT3?
And me…that’s my fear too about where this could go! I’m subclinical…tsh was 4.3 and then 4.7 and was put on a “6 months trial” of levo due to extreme symptoms. That trial finished in November, but they have continued to prescribe it so I’m keeping my head down! I did write a message to the practice when I asked for my last appointment to discuss an increase to 75mcg (thanks to SlowDragon s advice at that time) and that is on my notes saying that “I have had significant benefits from being on thyroxine” and I then listed them. I also sent a copy of my medichecks test showing positive tgab as an attachment and the statemnt from the medichecks gp that says prob due to hashimotos. I hope they take note of all that if it comes to it!!
It used to be said it was only necessary to test for antibodies once but I have carried on and in light of these manoeuvres by Pearce and questionable methodology and motives (no doubt inextricably linked), I will continue to maintain my body of evidence. It comes to something when the major obstacle to my health is the medical profession.
I don’t blame you. I just had a medichecks done and included antibodies again that showed my tpo increased but still normal, but that my tgab had gone up to over 300 again even though my tsh had come down
I think another recruitment conditions has, in effect, been added.
Those recruited will exclude many members of thyroid patient organisations such as Thyroid UK and ITT - especially those who are more active and regularly read posts and discussions.
If I try to be fair, Covid issues have caused massive changes to research studies in terms of achieving their recruitment and being able to stick to timetables.
true , we ought to be fair and not make any assumptions, as no doubt he will be doing the the same for us ....
Can you make head or tail of the meaning / intented use of this bit ? ( in bold)
"Primary outcome measure
1. Serum thyroid stimulating hormone levels measured using chemiluminescent assay at 6 weeks after levothyroxine treatment withdrawal
2. Serum free thyroxine (FT4) levels measured using chemiluminescent assay at 6 weeks after levothyroxine treatment withdrawal
Secondary outcome measures
1. Change from baseline in quality of life measured using thyroid-specific patient-reported outcome 39-item (ThyPRO-39) scoring at 6 weeks after levothyroxine treatment withdrawal
2. Proportion of recruitments versus patients invited at the start of the study measured using signed consent forms versus letters of invitation sent
3. Friends and family test measured using a subjective questionnaire at end of the study
4. Multivariate analysis of baseline demographics (sex, age), thyroid clinical features (prior TSH, duration of LT4 treatment) and biochemical parameters at 6 weeks (TSH, FT4)
5. Serum TSH measurements measured using electronic health records over 1 year
6. Number of levothyroxine prescriptions measured using electronic health records over 1 year"
I have had lifelong hypothyroidism and deafness. Diagnosed age 4 yrs old due to stunted growth, poor hearing/speech, constipated and all the other symptoms. My mother was told she was being a hysterical social worker. As a rebellious adolescent I stopped taking my thyroxine for at least 6 weeks ‘just to see’ what happened. I’m sure others may not want to be on lifelong pills unnecessarily but this study seems wholly unsafe. I don’t recall having a major myxoedema crisis but I did end up on 300mcg daily for next 20 yrs which then desensitised my thyroid hormone regulation. I agree with the comments made and idly wondered if and whether a trial could ever be done safely and ethically to identify people with potential thyroid recovery. We should take down the proposed one and challenge the ethics committee decision and offer a better safer hypothesis/alternative.
For this to be an effective experiment, surely they would need pre-trial blood tests of T4, T3 and then post-trial results of the same? If the test is about thyroid function ‘recovery’ or otherwise, then pre- and post trial tests of the ACTUAL thyroid hormones are necessary?? It seems to me that everyone with a post trial TSH of less than 10 will have their life-giving drugs removed.
The inconvenience thing is beyond belief. No one would suggest people with a heart condition or diabetes should stop their medication because of the inconvenience! The solution to the apparent inconvenience is to manage your medication through eg Lloyds Direct and get them delivered to the door, not stop taking them!!!
But hyperthyroid folks who depend on carbimazole to stop overproduction of hormones are made to stop taking their medication to see if the thyroid is functioning correctly.
In the absence of any other method of checking carbimazole is working (again another area perhaps of questioning why this check must be done so clumsily) I can understand the ‘why’. However the NHS, because of twits like Pearce, refuse to spend the tiny amount of money per patient to test T4 and T3. If they had not taken this decision, there would be a huge body of evidence with which to do important research and not this piddling alleged research.
Oh dear! I’m sure for the purposes of the test they could wangle some T3 tests ‘if they chose to’ for a trial that is about changes in thyroid function!!! To be fair I don’t always get a T3 test through the GP in Oxfordshire. He always requests it because he knows I procure my T3/T4 combo privately, but the NHS lab only do it about once a year, they just ignore his requests.
Indeed... 'nail-on-head': "For this to be an effective experiment, surely they would need pre-trial blood tests of T4, T3 and then post-trial results of the same?" Well said Emm555 . I've been scouring the published study info (via the link from MikeM46: doi.org/10.1186/ISRCTN65030272 ) but can find no mention of taking pre-trial baseline readings of ANYTHING... not even the 'blessed' TSH.
So in that case, if no pre-and post-trial blood tests are taken to gather factual, objective measurable data to inform the results, effectively, they won't take account of what we say (subjective data) about symptoms limiting our daily lives to GET medication, but ok to rely on what we say to STOP medication!! How did this ever get ethical approval?
This is not a study, their minds are made up it's just another cost cutter putting people in harms way . They cant get the doctors we need so they have to make savings elsewhere its political not health interest and we are the post office scandal of the thyroid world about to happen with such a trial.6 weeks ? what use is that, another criteria changing ,damaging onslaught. So much can be learned from experience like listening to patients long term but to allow trial as this is a danger not a help. 6 weeks? Id say the widespread problem we have is not enough experienced knowledgable ends , trying to put everyone in the same box when we are all different and you can therefore not gain anything from a so called study as this. studies in other countries where it may not be so damn hard to get treatment may well have 50% of people taking it when might not need after short illness but in the uk I cant see how the trial is fitting when you can be already so ill before even being given treatment hence probably not just a change due to short illness. when uk gps already do not test thyroid properly resulting in people having to get done privately then I fail to see what this all entails other than cost cutting as in their world god forbid public life and health be of more importance .convenient? what sort of word is that to be used in such a study, convenient for who?I also find it demeaning saying that people find it inconvenient picking up their tablets and difficult to remember to take tablets. who with thyroid problems would say this, when you need them and feel so rough you do not forget to take tablets (unless because of feeling so ill) and how can it be inconvenient to pick up tablets when many have the inconvenience of having to order their own because of failures to get a prescription to conveniently collect once a month.my relative had her levo stopped and 10 weeks later suffered a stroke. 6 weeks?why does it say 6 weeks stopping time yet' symptoms gradually returning over several weeks'? what is several weeks? more than 6 I suspect' again for some not others we are all different and do not see how we match other countries in this. I had results from private test telling me to seek gp help with my results and persistent symptoms yet my gp test was telling me all ok. I can tell you my health though was/is not ok, funding can be put to much better use . Reading about this trial has just completed my loss of trust in the nhs and politically, sadly it didnt have far to go . How about trials to see why tests do not always correlate with how ill you can be from thyroid effect etc.wow is all I can say, why is everything going backwards rather than forwards it seems. if you feel better on levo whatever test results show you can restart them? if you feel well you will be offered to stop? Of course why would someone want to take a tablet they didnt need and why 'whatever results show' you can take if it makes you feel better?
Of course there will be people who will be able to stop their treatment with recovery but as its all individual, healthcare has to stop boxing and generalising and offer better help for someone who might feel they can stop taking the medication but if they are to report symptoms and yet cannot get reinstated then of course they will not, and with the health crises we are in and appointments taking longer than 6 weeks to even get why would anyone risk their health with such a trial knowing the help just isn't there, its ok saying docs will help for up to a year but 🤷♀️🤷♀️
I see the end date but no start date anywhere. Just to say this is not ‘new’. A number of people have reported on the forum from this area, interchanges within Pearce about taking them off their levo for six weeks some months ago.
arTristapple we’ve messaged privately, but just for everyone else’s info, when it was suggested to me I knew nothing about a ‘Trial’ and no mention was made of one by Prof Pearce.
most people we hear of who've been suggested to try stopping Levo will not be part of this small trial artistapple ~ (Pearce is only looking for 130 patients from one GP group)......
Stopping levo will be routinely suggested to very many other patients who were originally offered Levo on a diagnosis of 'subclinical' hypo (ie. their TSH was persistently over range but under 10, but fT4 was still in range, who had symptoms that could possibly be due to hypo) ...... because stopping is a suggested course of action in the 2019 NICE guidelines for patients who still complain of issues once their TSH is back in range on Levo ...... (for 'issues' read 'patient is still moaning about something vague that is not necessarily related to hypothyroidism and could well be 'something else' )
1.5.4 .............. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment.
Monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment
Adults
1.5.7For adults with untreated subclinical hypothyroidism or adults who have stopped levothyroxine treatment for subclinical hypothyroidism, consider measuring TSH and FT4:
~ once a year if they have features suggesting underlying thyroid disease, such as previous thyroid surgery or raised levels of thyroid autoantibodies, or
~once every 2 to 3 years if they have no features suggesting underlying thyroid disease.
To find out why the committee made the recommendations on managing and monitoring subclinical hypothyroidism and how they might affect practice, see the rationale and impact section on managing and monitoring subclinical hypothyroidism .
When I reread the outlines for the research I saw much of what you have raised. That, against knowing forum friends who have been on thyroid medication for years are being stripped of their meds by him and a less than camouflaged threat, that any hypo patient unlucky enough to attract attention to themselves by seeking help, might end up minus their medication. When other issues about medication e.g. in short supply etc it’s a worrying time for people whose very illness makes them feel extra vulnerable. Never mind the sterling treatment provided/removed by our esteemed endocrinologists.
This time last year my private endo, who prescribes my 12.5mcg T3, decided I should lower my Levo by 25mcg to see if my TSH would rise a little. After 2 weeks on the lower dose I hit the proverbial brick wall and could not function. I went back to my original dose and told them I would not be doing that again unless I felt I was over medicated. I definitely could not cope with a lower dose, let alone no levo. When my FT4 drops below 20% of the ref range, my migraines get more severe and more frequent. It blights my life. I had years of low thyroid function with terrible migraines and other symptoms and I did not know about thyroid function back then. My TSH was tested and came back at 5 when the upper range was 5.5 and therefore it was ignored. I was not put on levothyroxine till my TSH hit 9.9
On my most recent prescription for my migraine tablets I found that someone at the surgery had changed my prescription details. I cannot take the generic. It makes me have a worse migraine with severe vomiting for at least 7 hours. I have had the original medication, Imigran for 14 years. But obviously they wanted to save money by making me come off Imigran.
If any doctor wants a person to try coming off their meds or trying something different, then they should have a conversation. But I feel most of the time the NHS just want to save money and it does not necessarily benefit the patient.
I could not be persuaded to come off my levothyroxine, unless it was to trial T3 mono, and I’d be nervous about doing that too.
Couldn't they just ask the thousands of patients who had to go without treatment for years because they were not diagnosed properly? Or those who had their dose lowered for no good reason or based on TSH only? But maybe this study will also go by TSH only? This is bizarre. Is this another attempt to prove that thyroid patients are overtreated? Or that it is all in their head? I suspect a sinister motive for this experiment. Never mind how the participants will suffer. Is this even responsible science? Is this ethical?
Not in my opinion- financial not ethical. Without a complete thyroid panel antibodies, vitamins and minerals for FULL picture it will just be yet another case of
Medical Catchphrase 🎲 🙄
So in this game we reveal a couple of the nine possible squares - now can you please give an informed diagnosis?’ Well just make one up from what you can see 🤡
I personally will not attend in this research and do not recommend attending to anyone either.
Why?
I met this Endocrinologist once and while I was describing my horrible symptoms and speaking about high anti thyroglobulin, he refused to listen and kept insisting on his words regardless of how terrible I was feeling for a long time.
This professor needs to think and ask himself that HOW someone with destroyed thyroid tissues which is the case either in people who remove their thyroid gland or have Hashimoto’s can produce enough hormones (T4) and back to normal after a certain time of taking medication?
If he really concerns about the side effects of patients who take levothyroxine long term, why not thinking about improving levothyroxine ingredients? Instead of using sugar, corn or maize starch in almost all NHS prescriptions?
I have no personal concerns about this study because I take Metavive but I have deep concerns about this man’s thought processes and the danger he represents
This man is completely immune to any concerns of patients. In fact he would manage to twist this post to his own ends. His disrespect for hypothyroid patients, GPs, research and mostly his overblown ego, is such that he is completely blind. His working environment must be pure hell for anyone with any brains and who might have actually cared about patients, once upon a time.
I live in North East and have not received any invite. I was referred to Prof. Pierce about 7 years ago for Hashimoto flare-up.
What intrigues me is that in Durham where I live GPs are now unable to request T3 or T4 bloods just TSH without referring to Endocrinology. In the past this was possible. Waste of resource entirely and a long wait now. So whatever this trial is about, which reads as if GPs are pushing thyroxine at people who maybe don’t actually need it, then it’s no surprise if GPs are not given the right tools to identify and monitor the thyroid basics. I really don’t get why they have removed these basic blood tests as it means GP are left guessing with TSH.
Seems a very peculiar study to even contemplate doing.
Yes, my T4 and T3 were unmeasurable and my TSH went to 65.2 [3 - 4.5] DON’T EVEN CONSIDER IT. I was utterly wrecked and still feel Fatigued even though I am back on 100mcg. I did not know this was a trial. The person I saw was not the person I asked to see. I was stupid to even consider it, I don’t know what possessed me. Basically he dismissed my Hypo diagnosis and also PA. (he had my medical notes) By the look on his face when I went back after 6 weeks I believe he could actually see the damage he’d done. I got a cursory apology. I have cancelled my future appointment.
Thank you for your sympathy, I think I panicked when I saw who was seeing me. I agree it’s appalling and detrimental to the patients as well as clogging up the NHS unnecessarily.
A better trial would be to give those with an Underactive thyroid T3 on top of their T4 and see how they feel and if their symptoms start improving regardless of less meaningful thyroid blood tests!
In the interests of being fair and balance - and trying to ensure that we do not fall into the 'echo-chamber' trap to which I referred in a much earlier reply...
Looking at the recruitment criteria[point 5.], they do specifically rule out participation by patients who have had a thyroidectomy, pituitary disease, or thyroid cancer (see snipped image, taken from link provided by MikeM46).
I want to be totally fair (unlike the study designers) - so that does preclude several posters on this thread who have highlighted that they could not possibly stop their hormone replacement as they have no thyroid, and also humanbean who has described their pituitary malfunctions (and possibly me as I'm having my pituitary investigated too).
From the same source - they explicitly say they will be measuring TSH and T4 after the 6 weeks (no reference to baseline measurements at the start)... so they do, at least, accept the need to measure T4, but no mention at all of T3.
Well, yes, ok... but what about autoimmune thyroiditis? No mention of that. And those that have it end up with no thyroid just the same as those that have had a thyroidectomy.
This is a potential dangerous situation to put people in, it happened to me. A professor of Endocrinology at a hospital in the centre of excellence for endocrinology (Addenbrooks in Cambridge) where I was referred by my GP, suggested all my issues were probably because I wasn’t hypothyroid at all and possibly I had a vitamin D deficiency at the time of my diagnosis. He told me to stop taking levothyroxine for two weeks to see if this was the case. After 5 days I could barely get out of bed, then I started to get really bad chest pain which was very frightening as I have atrial fibrillation. By the end of the two weeks I could barely function physically or mentally. I went for a blood test and my tsh had risen to 14. Ironically my tinnitus went which was wonderful but immediately returned when I started taking levothyroxine again.
Hi, I didn’t know about this rubbish and went along to see a private endo in the hope of getting T3. Told him I’d never felt great on levo and he said well ur antibodies are really low and I don’t think u need thyroxine so I’d like u to stop it for 3 months - just stop it right now! I foolishly trusted him as I thought if I don’t need it I need to know. At the end of three months I was like a swollen whale and he quickly admitted that I needed thyroxine and agreed to T3 prescription. If I’d known sone sort of stupid protocol was involved I would have never agreed but I trusted him to have been acting in my best interest. This is lunacy and should be stopped as my health has really suffered since
That’s interesting I live in Colchester and saw a NHS endo who was rubbish (is also a private endo) then got a referral to another endo for a second opinion who suggested I may not have hypothyroidism and to stop levo!
Thank you SO much to everyone who's commented on my post. What an outpouring.
I think only one person so far has actually been on this trial. Maybe there will be more. I'm trying to collate experiences from it.
I can't answer every comment I'm afraid. Perhaps spare a thought for me, as I've had an email alert for every comment - 239 so far!! But thank you all.
The 50% recovery figures was quoted in the summary of NICE committe work on Thyroid Disease: Assessment and Management produced in 2019. This was a major piece of work that did diddly squat to change anything on the management of this disease.
The paper below lists the evidence and tests reviewed. I imagine it came from one of these.
Whats interesting is the committee went on to make the following statement on these tests
"The committee noted that the absence of a clinically important effect could be at least partially attributed to the relatively short-term follow up periods of the studies included in this comparison, which ranged from three to 12 months. They felt that this was likely to be insufficient to observe a clinical difference that is likely to emerge later after treatment particularly in regards to depression and symptoms, there was agreement that a longer follow up would be required to draw conclusions about the effect of treatment with levothyroxine for adults with subclinical hypothyroidism. "
I had my T4 reduced twice by an Endocrinologist because of a so called TSH deficiency, and under threat of having my T3 taken away. They then swapped me onto liquid T4 which I initially could not tolerate, so had to slowly titrate onto it. This had the effect of very quickly dropping my FT4 to below 3 and my FT3 to below 5. I was very unwell but my TSH didn’t budge! By that time I was taking 100mcg of Levo and 20mcg of T3 it had taken almost 3 years to get my FT4 up to above 12!
As I’ve recently found out I’ve got an Atrophied thyroid which is under a third the normal size, I’m assuming I would not be accepted on this “Trial”! If it’s taken me 3 years and counting to get back from my forced reduction can you imagine what not taking any meds would do?
And if they think taking one tablet a day is an inconvenience, try sticking two heparin injections in your belly twice a day not to mention the 8 other medication pills! And then there are the vitamins…..
I have been thinking of reducing my dose on my own (gradually). The reason is that having had half my thyroid removed, I was put on 75 mcg of levo but I also have been reading that older people (like me) might have more health problems due to overdosing. So I plan to go down to about 60 mcg a day and then down to 50. After 3 months I will get a test and determine how I feel. I don't trust the doctors so will do this on my own. I have developed both osteoporosis and hypertension so I would like to go lower (if I feel ok) to circumvent these side effects. Only if I am SURE that I feel ok with 50mcg will I tell the doctor and ask to have the dose reduced. Years ago I was on armour and for the temporary condition and the doctor had me reduce the dose slowly. I think it is cruel to have people just go off it.
Taking levo when you don't need it will make you ill, but I wouldn't call it 'side-effects' because it's not the T4 itself causing the problems, it's having too much of it, like being hyper when you have Graves'.
But, that's not at all the same thing as saying that osteoporosis and hypertension are side-effects of levo. If they were, the T4 your thyroid makes itself would also cause them, because levo is just T4, it's not a drug.
Osteoporosis and hypertension can be symptoms of over-medication/hyperthyroidism, but they can also be symptoms of under-medication/hypothyroidism. The thing is to get the balance right: taking enough to make you well, but no more than that. And that depends on so many things, including how well you absorb the T4, both in the gut and at a cellular level, and how well you convert the T4 to T3.
Hi Greygoose, I was one of the unfortunate patients who fell for this nonsense and trusted the endo 😩after 3 months without levo I was like a blown up whale and not good. With hindsight, my bloods except for T3 were all good when I saw him and he suggested this, but how could he say I didn’t need levo when my bloods were fine. Surely on my dose of 100mcg T4 if I didn’t need it I’d have been badly hyper? This would mean he’s an even bigger Pratt than I now think!
yes I’m sure you’re right - maybe they get some kind of brownie points for following the cruel, stupid guidelines. I was stupid to believe him - hindsight is a wonderful thing, but the fact that I told him that my mums family is riddled with Hashimotos was also a massive clue he ignored probably deliberately - maybe they get a bonus for getting people off the free prescription list
Unless you 'go off it' your body won't kick in 'if' it can to make some more? We either take a full replacement dose or none, you can't just 'top it up' I'm not sure what your thinking is behind this idea but I hope you have support 😕
Low fT3&4 is terrible for your heart, bones and brain along with stomach, skin and every other part of your body
Looking back at previous posts you weighed 132lbs (2 years ago) so are very likely under dosed at 75mcg did you ever increase it? Also your Vit D was almost deficient along with low ferritin, did improving those help?
My weight is good for my height. I am tall. I did get the ferritin up and the Vitamin D. I don't think the study is motivated by saving money. Here in the U.S. I feel they often overprescribe because the doctors are basically arms of the pharmaceutical industry. There have been articles and studies here in the U.S. about the possibility of levo being overprescribed. Do you think that any of the endo patients like yourselves could write in and ask to be part of the design of the study? All of you could give valuable criteria and change the study completely.
Here in the U.S. I feel they often overprescribe because the doctors are basically arms of the pharmaceutical industry.
But the study isn't being done in the US. And in the UK, things are totally different. And, the difference I think is the NHS. The NHS is going bankrupt, but more and more patients are making demands on it. It has to cut as many corners as it can. Coming down heavily on thyroid patients is a false economy, we all know that, but they don't like thyroid patients, anyway, so it's a good place to start cutting back! Pretty certain it is all about money and nothing to do with patient wellfare.
For your weight as a general rule you'd expect to be on 100mcg Levo
The US has a very different system (which I have no knowledge of) to England as like you say they are keen to get you paying... over here if you have thyroid issues all prescriptions are free so they are much less keen to start you without having at least 2 tests 3 months apart showing your levels are high or low.... even tougher for people with secondary Hypo 😕
Out of interest, how much does it cost to treat Hypo in the US?
I asked my GP if I could lower my dose at one time. He reluctantly agreed. After a month or so I asked him, could I increase it again, which he was happy to do.
I think this study is trying to catch those people who were put on Thyroxine after an illness - I believe being ill can throw the thyroid temporarily off kilter, so perhaps they were mis-diagnosed. I'm sure most of us don't fit into that category.
So they should contact people and ask if they had an illness before being put on thyroid meds. (Assuming they are not allowed to read the patient’s notes) Most of us were ill for years before being put on thyroid medication. It was the lack of thyroid hormones that made us poorly.
Not convinced that that ever happens - or very, very rarely - because doctors are so reluctant to test for, diagnose and treat hypo. And the three month gap between the first over-range TSH and the second should weed out those people, anyway.
Lovecake greygoose I am only guessing and yes I'd be amazed if anyone here would fit into that category, but I did read about it somewhere, and I know it happened to my cat 😂 I thought it could happen after pregnancy too? Anyway, they certainly seem to have worded their request for volunteers strangely and not been very clear. You'd have to be quite brave to volunteer I think.
Brave or crazy! Actually, I don't think there'll be any shortage of volonteers because we're always getting people on here asking about coming off their thyroid hormone replacement because they just don't want to take it any more, or believe they don't really need it. This study will seem like a god-send to many of them, and just confirm their conviction that it is possible.
Pregnancy is a different matter. Many women begin their Hashi's journey just after child-birth, but doctors so often 'diagnose' it as 'just' post-natal thyroiditis and tell them that it will go away. I've never read a case where it does actually go away, and eventurally turns out to be autoimmune thyroiditis, which is for life. But, as I keep saying, they do not want to diagnose people with hypo of any kind. A friend of mine in Belgium was telling me the other day that when she was diagnosed with Hashi's, her doctor told her 'of course, hypothyroidism isn't a real illness'! Well, why does it make you so very ill, then?!? Unbelievable.
That is shocking - not a real illness?! Hopefully that Belgian doctor doesn’t come here. Yes if it’s autoimmune, it will never go away. Thankfully my GP treated me when I was borderline for that very reason. Sadly retired now, but he was a star.
A consultant of mine of 7 years told me to stop taking my levothyroxine to see if I really needed it, by the way my tsh at the time of him saying this was in the 40's as I learnt later. So he knew I needed it and was bypo. I had been hypo for 10 years at that point after the birth of my first baby.
I stopped it because I was stupid and hopeful.
So I stopped it cold turkey, by day 10 I had swelled up by about 15 pounds face and whole body, slow pounding heart and I was freezing, then as I lay down in bed exhsusted I began to get gushes of what felt like hot water pouring over my mid section under my ribs, jolting me to stay awake, ( Adrenaline) trying to save my life. This went on all night on a new year's eve, ice and snow outside, no ambulance to get me as I was going unconscious. It was terrifying.
My husband brought me around with a 20mcg liothyronine pill that I used to take years before as a combination of T4 &T3. I was taken off of. It stopped the Adrenaline gushes and calmed me down, I had immediate diarrhoea.
I got to the hospital next morning, Tsh of 98, I had another 20mcg t3 and saw my consultant and he said it was only anxiety because he was terrified what he'd caused me. Severe hypothyroidism I had. There was another doctor in the room that heard him say anxiety and he was shocked too.
My body was full of fluid 2 stone of it, that took a year to get rid of. I was breathless and exhausted. I could barely tolerate 50mcg of levothyroxine aday that they startted me back on, I used to take 150mcg aday originally.
Many years ahead now I take only T3 daily.
Never would I stop my thyroid hormone. Especially abruptly.
Yes I had to stay off my levo for 6 weeks before getting the big dose of RAI 10/15 years ago and I can tell you it is not nice, Not nice at all, I would never do it again but I did not know any different back then and the doctors were the saviours to me thank God I woke up to their BS...
Am I missing something here. I am certainly not as well read as most people here, but as I understand it, once we are taking thyroxine, we are not "topping up what we are producing" as I once thought, because once we started taking thyroxine regularly our bodies say " Hello, there seems rather a lot of thyroxine about, we better start producing less!" Certainly, when I had my last ultra sound on my thyroid, I was told that it had atrophied, which I assumed was as good as useless, so I actually need the thyroxine. My sister, who had never been diagnosed, was found almost in a coma because she had no thyroxine at all, she nearly died! So, no, I won't be applying for the trial! 😀
I’d love to see the ethical submission for this research, how did this go through?
Also I feel the research may be fundamentally flawed in its reasoning, given that TSH can be very slow to rise, while fT4 (and fT3) gradually reduces. Also that gradual decline in fT3 and fT4 can be difficult for patients and doctors to recognise at first. As others have said, a six week withdrawal is likely to give misleading results.
We desperately need more and better research into hypothyroidism but I’m not sure this research is likely to benefit any participants or thyroid patients more generally.
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First bloods since started thyroxine 100mcg 6 weeks ago 
Has anyone been prescribed thyroxine when TSH was normal?
