Simon Pearce is recruiting for a trial to try and push his over prescribing of Levothyroxine fantasy, when the reality is getting the stuff is like pulling hens teeth even when you desperately need it.
So much valuable research could be undertaken and this is the ONLY trial on hypothyroidism in the U.K. that is recruiting. It’s deeply depressing: bepartofresearch.nihr.ac.uk...
Patients presenting with hypothyroid signs and symptoms and a TSH below 10.0 probably don't have primary hypothyroidism. He should be trying to find out what is causing their hypothyroidism, e.g. endocrine disruption or a degree of central hypothyroidism.This study should be placebo controlled, it would be so easy, just give half the participants placebo tablets. It's not a RCT so will be low quality and of no value.
Patients presenting with hypothyroid signs and symptoms and a TSH below 10.0 probably don't have primary hypothyroidism.
Many, many Hashimoto’s patients are profoundly hypothyroid with TSH well below 10
Low vitamin levels will affect TSH
Total over reliance on TSH as infallible
Essential to test full thyroid, including thyroid antibodies and vitamins and actually examine the patient
I was hypothyroid with a TSH of 1.0. I do not have primary hypothyroidism. If someone is profoundly hypothyroid with a TSH of e.g. 6.0 (or lower) it is very rare for them to recover when their fT3 and fT4 are restored to typical healthy levels. They are not suffering from primary hypothyroidism (insufficient thyroidal secretion). The problem may be sue to insufficient thyroid hormone action due to causes other than primary hypothyroidism.It's essential that this study os placebo controlled because it is likely to recruit people who are not happy being on levothyroxine.
This study should be placebo controlled, it would be so easy, just give half the participants placebo tablets.
How are you going to do that when (if you read the study protocol) they are taking people OFF their levo completely for six weeks not giving them anything extra! ???
Taking someone off their medication for 6 weeks is bonkers to base a trial on anyway!
Instead of taking the tablets away you give them new tablets, half the study group would receive levothyroxine and the other half placebo. The study is poorly designed, the cohort will be biased against taking levothyroxine and it is not placebo controlled. Perhaps this boas is intentional.
I would say it's pretty obviously intentional! He has a point to prove, and if he does the trial by the book, he won't get that proof - he'll be proved wrong!
Will he be proved wrong? I suspect he won’t be. It’s a 6 week trial off medication. If you choose people who are already on an insufficient dosage of levothyroxine because many people are, due to doctors’ insistence of the exquisite sensitivity of TSH, then what will results say at that 6 week point? And if TSH has been suppressed for a while, it probably won’t come up very much in 6 weeks.
He’s setting the volunteers up to fail.
Yes, I know he is. 
But I think you mis-read my comment. I was saying that he would be proved wrong in his theories if he did the trial correctly, placebo controlled and all that. Which is why he's not doing it that way. He's not under any illusions about what he's doing, he knows he's setting them up to fail and that a lot of them will lose their levo, and that's what he's counting on. Although god knows why anyone would be that hateful. Doctors just seem to hate hypos.
He should be trying to find out what is causing their hypothyroidism, e.g. endocrine disruption or a degree of central hypothyroidism
Definitely.
I had a TSH of around 7 but I had consistently below range FT4 and very low FT3 on each successive test. Which I read means overt hypo. Its only because I was being tested for other things, including breathlessness, that my hypo was flagged up. Otherwise my TSH could very well have got to 10 or beyond.
Clearly you had a pituitary problem as well as perhaps a failing thyroid. You wouldn't be picked up by this study but they would then go on to assert that you are not hypothyroid because your TSH is only seven. Bad science.
I would class this study as insane. Ironic therefore to see it obtained approval from The Research Ethics Service based at Dykebar Hospital, Paisley , a former district asylum and now a Psychiatric Hospital.
It just gets worse, doesn't it? Not long ago I read about a pilot study of removing levothyroxine from patients over 60 (if they agree that is) to see if they still need it. If after a year their TSH has mot risen yo over 10 then they font need it. End of.
This is because apparrantly you produce less thyroid hormone after 60.
And now it looks like they are trying to generalise this to eider age groups? All thos for a saving of 4p a shot
I bet no one is following this patients up eith how many other meds get added in, costing far more.
It feels like the world of medicine is determined to keep patients ill, those that do recover on the correct dose or combination of thyroid meds, thrn get them removed!! I despair. Truly.
It's unbelievable that they should even think of trialing to take thyroid patients of thyroid meds. What are they thinking? My thyroids today are in a Bottle. I have no G-D given Thyroids. I Pray that it Never Never Ever Happens.
? Would it not be better use of research funds to just remove the remaining half of Simons thyroid and monitor what happens to him when his levo dose is adjusted strictly by TSH only ... and and so it's a proper random trial ......can we give him a different brand picked at random every month (and make him get two busses across town with two toddlers in tow to pick it up every 28 days ?) .... just for fun.
This is my thinking, if you want the Endocrinologist Badge then you need to have spent 8 weeks on a low dose of T4 whilst still fully actively working, child rearing, sport activities etc
All quite cheaply done by monitoring with a fitness tracker to see how it effects their sleep, activity levels, heart rate etc... they could even keep a symptoms diary as this might be a huge leap forward in their understanding of the mental effect making them a more effective Endo for 30+ years
Cost.... a few Fitbits and a spreadsheet
to give a fair comparison to the majority of hypo patients , he really needs to figure out how to infect himself with an autoimmune thyroid disease. which (as far as i'm aware) he hasn't got.
I've always wanted to stick MP's or wannabe MP's on Job Seekers Allowance for a year, in a damp one bedroomed flat, with no car and no access to any extra funds. So that when they start talking about welfare and poverty they actually know what it is actually like.
It’s a bit like making a disability MP actually use a wheelchair for a week and see what it’s like to get round!
Bring it on!
Is he over 60? He probably doesn’t need any levo at all, we could safely withdraw it
😂🤣 Can we add Amiodarone into the mix as well please? And then when he's on the floor with his thyroid levels thoroughly messed up get the ICB to remove his meds as a cut back and tell him to go and buy with no prescription.
There’s much I like about this study and a whole lot I don’t.
Perhaps some people can do without thier levothyroxine. But, if so, I’d think it’s more important to delve deeper into the cause of it. Perhaps they have TRAB/TSI antibodies which switch between stimulating and blocking for example.
I wish there was much more focus on the antibodies sides of things.
This bit about pregnancy still confuses me ... i presume it's a typo,,, but then who knows with this lot of sadists ... surely it should say you CANT take part if pregnant or planning within 6 mths ... but the wording in the eligibility conditions implies you can.
i mean i know we can't expect simon to understand the complexities of subclinical hypo treatment , but you'd think he ought to be capable of writing instructions in english ?
"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
You may not be able to take part if:
Does not meet the inclusion criteria"
Ooo. That’s a good spot! What the hey does it mean?!
lol . it means they didn't bother to get anyone to proof read it ~ which is about the level of arrogance and lack of attention to detail/ lack of giving a sh*t that i would expect from the delightful simon.
Sounds about right.
It’s not clear if pregnant women can take part or not. I’m guessing not!
I’m sorry, but if I was pregnant and hypothyroid I would not be risking either my own or my baby’s health for the sake of some ego trip by an already discredited ( in patient’s eyes) professor with questionable ethics!
"Possible Benefits and Risks
Benefits and risks not provided at time of registration"
WTF ?.... [insert appropriate swear word here]
It is at reads..... no risks or benefits explained! Seems par for the course.....that way they can take no liability for what happens to you!!
Morning rant...
Why do we face this obsession with TSH, a pituitary, not a thyroid hormone, when testing FT4 anf FT3 are more accurate markers and give a clearer picture of thyroid function?
That was routine when I was first diagnosed over 20 years ago.....stopped about 2 years later
Cost?
Quick result?
Ignorance?
The cost to patient's health from wrong diagnosis and therefore no, or wrong medication is greater
(It took me 17 years from eventual hypothyroid diagnosis to discover I have a form of Thyroid Hormone Resistance which despite levo treatment left me barely able to function....all of that time relying mainly on TSH. I have the labs!)
The cost of treating the patient's symptoms (and other diagnostic tests) the consequence of undiagnosed hypothyroidism, is potentially greater.
(I had numerous (negative) tests and treatments both NHS and private in the intervening years)
The possibility that symptoms of untreated hypothyroidism will develop into more serious conditions is greater, if the underlying cause is not addressed
(One example - in my case - a treatable acute UTI, a symptom of hypothyroidism, appears to have developed into a difficult to treat recurring or chronic UTI with miserable symptoms) on going for about 10+ years. I'm currently floored and waiting for more lab results and antibiotic treatment)
Missed signal of poor conversion ....high FT4 with low FT3....is greater
A missed condition at the point of diagnosis eg a failing thyroid gland is greater
Just a few examples of the folly of relying on TSH.
Ah.... but we are mainly woman (apologies gents, we know you suffer too) and therefore must have overactive imaginations. It couldn't possibly be the fault of unreliable much lauded TSH tests relied on for diagnosis and often medication.
Yet....there are people/ medics who will read this study and continue to put it into practice while patients suffer.
Stuff and nonsense!
Tantamount to medical neglect?
Come on Simon, get your act together!
I do have a long memory of more enlightened times....
and I despair!
Side bar - Thyroid Hormone Resistance
Is there a test for this? If not how does someone know if they may have this?
It's a tad complicated but basically a case of lengthy trial and elimination until you discover that a supraphysiological dose of T3-only is effective,...bearing in mind that unnecessary high T3 doses can be dangerous..There is one genetic test to check the beta thyroid receptor...but the rest are post mortem!!
Thank you.
Wikipedia says this en.m.wikipedia.org/wiki/Thy...
Would that be an accurate way to tell? High frees but normal TSH?
Would that be an accurate way to tell? High frees but normal TSH?
not exclusively , no , (and not in the sort of thyroid hormone resistance which DD is talking about as i think she has a supressed TSH ?) .
high frees with non supressed , or normal, or even high TSH, could also indicate a TSHoma ( pituitary continually chucking out too much TSH due to a tumor)
also , you'd first have to exclude all the various sorts of lab interference that might cause false high TSH / or false high free's.
(also , you'd have to exclude 'non compliance with taking levo regularly , then taking a few large doses before blood test' , as this will also cause high free's with non supressed, normal, or even high TSH)
In addition to the physical conditions that are exacerbated by the failure to treat the hypothyroidism, there’s also the mental toll it takes… I remember a member called Jackie here who, sadly took her own life because she couldn’t get the right treatment and she wrote a letter that was read out by the coroner (I believe) and even that wasn’t enough to make the “establishment” think again… perhaps that should be published again and again and again. Who knows how many others there may have been who didn’t write letters?
Absolutely....I too remember that tragedy, thank you for raising it. It was a serious omission on my part because at one point I too felt I had, somehow, to end the misery.
In my rants on this forum I've written several times, that we have no idea how many are quietly existing and, in extremis dying, behind closed doors because of failed diagnoses and treatments.
And their death certificates won't record their demise as lack of T3 or medical neglect. Without TUK I too would very likely have become one of that number.
Are the powers that be really so ignorant and heartless?. To quote tatty below, they "risk seriously buggering up the lives of real people". They "buggered up" mine, over decades.
There's none so blind as those who will not see....yet this study perpetuates exactly all of that and it's not just about TSH.
Pearce et al....time to remove those pink tinted goggles and to see the dark reality.
If I would be treat according to my TSH's I don't want to know even how that might even make me feel and function. By the way my question is who decides for us what range numbers we ought to be? Are we one size fits all ????
I do too Dipoy Dame......back then I thought it was hard work but at least there was flexibility in treatment and diagnosis. These days you'd have to be an olympian to get over the bar to get a diagnosis and then once over the bar the goal posts keep moving so treatment gets further and further away or lower and lower....and then when you finally score a goal.....you realise it's a home goal so you loose what ever bit of treatment you ever had......
I'm left wondering if they'll eventually say Hypothyroidism doesn't exist, it's a disease of the past......stastically proven as a fact by the impossible criteria they've set..
Pearce is already saying it doesnt exist in the old - when it’s mainly older women that get it 🤬 It’s eugenics by the back door and deeply concerning. It is heavily implied in the blurb that only the young need treatment.
You’re so right - where will it end?
Eugenics. That’s the word I am so often fumbling around for. Honestly I think that’s what is being practised on all of us hypos, not just those of us over 60. I hope Pearce takes the opportunity to retire as early as possible but I don’t think he has even quite reached 60. Maybe this is wishful thinking for his own case, as he maybe does not want to take thyroid hormones himself.
Whatever, we really don’t need ‘researchers’ who are purely single minded (single thought that is), like him. We need open minded researchers, curious and creative enough to be looking for sometimes complicated answers. With Pearce it’s like painting by numbers. Any artist worth their weight, after one contact with painting by numbers knows it’s not for them. Pearce just hasn’t noticed he is a prat. I can’t help thinking that his colleagues must know this and yet ….
and anyway .... since we are in the uk (and so is newcastle, last time i looked) ...... what does USA overprescribing have to do with treating patients here ?
and if loads of people in USA are put on levo incorrectly due to temporary raise in TSH from non thyroidal illness.... where is the evidence that loads of uk patients are started on it without first doing a repeat TSH at 3 months ? ... i suspect there is no evidence of this , because i suspect it happens very very rarely on the NHS ... if it did , it would be totally against their thyroid treatment guidelines .
and if this IS the case in UK, surely the first point of action should be to re-educate the GP's who have been doing it to wait long enough to rule out NTI before prescribing levo. not to risk seriously buggering up the lives of real people.
I thought the NHS already had a very high bar for initiating Levo. A TSH of 10 or over or under range FT4 or FT3, and/ or high antibodies. I'm sure I read once a few years ago the UK and Canada both have high hypo treatment thresholds.
Now my cynical brain wonders if that is because both " enjoy" publicly funded healthcare, rather than insurance based. Or is it that other countries are in fact overtreating hypo and in some cases are medicating people who maybe dont need it. Precisely because there's a profit to be made from prescribing Levo. Its confusing.
NHS can (and do) initiate levo in patients with subclinical hypo (TSH over-range with fT4 in-range) IF they are are suffering symptoms of hypothyroidism ...but not without first ruling out NTI by waiting 3 months to see if TSH lowers again.
current guidelines say levo should only be 'considered' after they have 2 TSH's 3 months apart that are 'over range but under 10' ( when T4 is in range) .. the presence of raised TPOab is taken into account , but is not deemed essential, but having said that, I think you'd be unlikely to get offered levo easily for TSH's of only 5 or 6 without also having positive TPOab .
before the current guidelines were in place i was prescribed levo in 2003 with TSH 5.7 then 6.8 (T4 in range) but i had TPOab of 2499 , then >3000... which shocked GP i think. I had some physical signs of hypo~ lumpy eyes / nose , slow reflex relaxation, and had been dealing with worsening symptoms of cold /constipation/ exhaustion/ slow brain / slow speech etc for previous 4 yrs
had i not had those astronomic antibody levels , i strongly suspect my GP would have continued to offer antidepressants and probably not even mention my rising TSH to me .
i daresay levo is prescribed far too easily/ to quickly in some places,, and possibly by some private endo's .... but i'm pretty sure it's not a widespread problem in UK , and certainly not in the NHS in my experience.
I had elevated TSH, 7 something, but my FT4 was 11 by that point ( 12 -22) and my FT3 was barely in range. When they next tested TSH 3 months later my FT4 had dropped to 10 so it was clearly struggling. I always thought mine was SC hypo but I've read below range frees mean overt. I've never had raised antibodies so couldnt argue that one.
From everything I've seen on the forum members struggle to get diagnosed and started on Levo, the NHS seems very unlikely to be over treating.
yes , it's classed as overt if T4 is below range.
but not without first ruling out NTI by waiting 3 months to see if TSH lowers again.
They wait a lot longer than that if they feel like it.
I was told my thyroid was "borderline underactive" when I was doing IVF in 1990, and the doctors involved decided that I didn't need treatment.
In 2013, for the first time ever, I asked my NHS GP for a copy of some blood test results, and I discovered that between 2009 and 2013 inclusive I had had six thyroid function tests. Most were TSH and FT4. One included FT3. Five out of six TSH results were over range (between 5 and 6). The FT4 was always in range but usually low in range. The one test of FT3 was 11% through the range. Not once in that time had anyone told me I had subclinical hypothyroidism. Not once had it been suggested that I be treated.
But once I knew about the subclinical hypothyroidism I asked for treatment and I got it prescribed - very, VERY reluctantly. My first prescription was for 25mcg Levo but it did get increased quite quickly. Unfortunately I couldn't tolerate it at all. I had other health problems throughout those years too. Note - the treatment didn't materialise until I found out that I had subclinical hypothyroidism. The doctors never volunteered the information.
It turned out several years later that I had a completely flattened pituitary, which may explain my high TSH, and was told I was probably born with it. All those years with no energy, low motivation, depression, and being blamed for it because I was assumed to be lazy. I do hope there is no such thing as reincarnation.
Well it’s not my experience I was almost dead before I got thyroid hormone treatment. This assertion of millions being forced fed levo when there’s no reason for them to be taking it is pure fantasy. This man is a sadist and misogynist perverting medicine to his own sick ends, pure and simple
have only just noticed the name he's had the audacity to use for this travesty of cr&p 'research'
"Optimal prescribing of levothyroxine..... "
seems safe to assume he doesn't know what the word 'optimal' means then ?
"the best or most effective possible in a particular situation"
oh wait . silly me ..... he must mean optimal for him , not us.
This research is not based in help for patients at all. Apart from this idiot being the source, what’s it actually for? It’s an exercise in politics. He should be kept a million miles away from …. people.
Locked up - pity they shut that asylum that’s funding him.
Yup!
Just thinking. Has this not come up before? It’s too similar to last time this was discussed. If it’s not the same so-called research, this guy is even more on his megalomaniac mission to conquer all hypothyroid patients, who won’t shut up. It must be annoying the hell out of him that such a vulnerable squashable bunch of patients just can’t actually be quelled. Maybe we are more successful than we think. However lookout, he is so dangerous to our well being and our lives.
Apart from anything else he such a time waster.
How we need that organisation Rapunzel was talking about on her post!
Sorry, I didn’t mean to cross post - the expression is now making me smile cos of its double meaning. Very appropriate.
Brilliant.
Trial on ERFA/Levo raised heart rate consultant suggest Liothyronine/Levo instead - any thoughts experience on this very welcome.
Subclinical Hypothyroidism, Hashimotos, Levothyroxine.... is this normal?
Results after T3/T4 trial...is this it?
central hypothyroidism? help, this is a really weird situation :( 
T4 unchanging on Levothyroxine - is this normal?
