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A Canadian take on the recent BMJ paper on SCH

I like this lady's incisiveness in analysing and commenting on the BMJ paper and thyroid matters generally. It's from the Canadian Thyroid Patients Campaign site. It's a bit long but worth the read:

AN UNREACHABLE DIAGNOSIS

This newly published guidelines document by Bekkering and team are based on a 2018 research review article that analyzed of 21 previous studies of subclinical hypothyroidism. (Feller et al, 2018).

Bekkering and colleages aim their attack “against thyroid hormones” in adults with Subclinical Hypothyroidism:

“The guideline panel issues a strong recommendation against thyroid hormones in adults with SCH (elevated TSH levels and normal free T4 (thyroxine) levels).

It does not apply to

women who are trying to become pregnant or

patients with TSH >20 mIU/L.

It may not apply to

patients with severe symptoms or

young adults (such as those ≤30 years old).”

We know what this means. Our modern medical systems are excessively focused on numbers, not careful reading, so it will be misinterpreted even more strictly than it is written here. Merely mentioning symptoms and age will not help patients whose doctors are focusing on the convenient number 20.

The >20 mIU/L cutoff will likely deny even “severe symptoms” the honor of being called “hypothyroid symptoms.” Even the younger adults will be told “you’re too young to have thyroid gland failure. You’re not in your 40s yet.”

Bekkering’s guideline-writing team had little basis to make this category so large.

Feller’s review article, the main research basis of Bekkering’s guidelines, listed no less than ELEVEN limitations of their review as various populations to whom their review may not apply, and yet Bekkering only gave FOUR exclusions.

Feller and team said quite explicitly in their “Limitations” section that because only 2 of the 21 studies focused on people with TSH higher than 10, the findings of their review “may not be generalizable to people with subclinical hypothyroidism and a [TSH] level higher than 10 mIU/L.”

— And yet the diagnosis was generalized to >20 mIU/L anyway!

DISMISSAL AND DELAY

Some of us thyroid patients have suffered years or decades being untreated because our Thyroid Stimulating Hormone (TSH) level did not rise high enough to qualify for thyroid hormone therapy.

Those of us who have finally attained optimized therapy look back with anger and disillusionment at the system that imprisoned us for so many years of our lives.

We could have listened to with compassion, we could have had access to a combination of relevant, cheap and available thyroid tests, and once we were finally treated, we could have had more effectively optimized therapies that made it more worth the long wait.

We could have been set free earlier.

Subclinical hypothyroidism has been defined variously in different times and places. The most permissive definitions define it as an elevated TSH concurrent with a Free T4 level that is within reference range. The most restrictive definitions have raised the TSH bar to 10 mU/L, which is far above today’s upper cutoff of approximately 4 mU/L.

And now the guidelines say doctors should delay treatment even longer for millions like us by raising the bar to more restrictive levels!

These new guidelines want to raise the TSH cuttoff from >10 mIU/L to >20 mIU/L.

Over our years or decades of suffering, while our TSH was not high enough, our symptoms were continually dismissed as being non-thyroid related.

According to the scripture of modern therapy guidelines, our symptoms are not truly thyroid symptoms unless the TSH rises high enough to declare that they are.

TSH IS NOT THE JUDGE

The problem all along is that the TSH is NOT the cause of hypothyroidism in organs and tissues. But the TSH is being used to judge our eligibility for thyroid hormone therapy because it happens to be tied to T4 hormone.

Anyone who knows the basics will understand that TSH is a secretion that calibrates itself in inverse proportion to T4 levels in blood.

But neither TSH nor T4 are capable of entering thyroid hormone receptors in the nucleus of cells to activate genomic action there. Only T3 hormone can do that.

The invisible cause of our suffering is a reduction in the most essential thyroid hormone of all, the T3 hormone, which never gets noticed. Blood levels of T3 stay within reference range during untreated subclinical hypothyroidism. In a medical system that only judges a lab test result by being “in or out of range,” a T3 deficit lies hidden. Our drop in Free T3 is relative to our individual body’s needs, not relative to a range statistically derived from a larger population. Not even the physiological effects of tissue hypothyroidism like ankle reflex get tested anymore, though it’s a very affordable test.

Reduced below our personal set point, yet statistically “normal,” our T3 levels in blood and tissues render us progressively more and more symptomatic, fatigued, and depressed, with a huge list of additional symptoms, unable to function normally and sometimes unable to earn a living and maintain relationships.

In autoimmune thyroid disease, it can take decades for a thyroid gland to die an excruciatingly slow death from antibody attack. As the thyroid gland is gradually wrangled into a fibrosed mass of inert tissue, the TSH level creeps slowly higher, but often too slow to satisfy our medical system. Our T4 remains stubbornly in reference range, so we don’t look hypothyroid there, either.

This form of hypothyroidism is not so “mild.” Some of us collect additional autoimmune disorders to think about, and hypothyroidism can worsen other chronic diseases like chronic heart disease. We can become a costly burden to our society, our families and friends, and ourselves.

It is a horrid existence to be imprisoned within your body and have your medical system dismiss your suffering because your TSH is not high enough nor your T4 low enough to qualify you for rescue and the real reason for your suffering is beyond the detection of modern medicine.

This arbitrary diagnosis barrier is so high because the TSH test and the T4 reference range that define “subclinical hypothyroidism” are very blunt instruments, unable to identify patients whose glands have suffered enough autoimmune destruction. We suffer a hidden hormone deficit. (Hoermann et al, 2016)

TREATMENT WITH (ALL) THYROID HORMONES?

Secondly, Both Bekkering and the research by Feller falsely overgeneralized about all thyroid therapy modalities being equally ineffective in addressing hypothyroid symptoms and health problems.

Bekkering continually uses the phrase “treatment with thyroid hormones,” plural. Feller says “thyroid hormone therapy.” But thyroid hormones used in therapy could involve T4, T3, or a combination of the two hormones, and they are very different in their effects.

All 21 trials reviewed by Feller were about ONE form of thyroid therapy alone — synthetic T4 hormone (levothyroxine).

Neither research article mentioned the hormone medication “T3,” (liothyronine) nor desiccated thyroid extract (DTE / NDT) which contains T3 and T4.

Neither the review article nor Bekkering’s guidelines mentioned that T4 is the largely inactive hormone that the body must convert into T3, the active hormone, and that T3 is a far more potent and potentially far more effective medication.

Neither the guideline nor the research review had the right to generalize beyond the ineffectiveness of levothyroxine monotherapy in the treatment of thyroid disease.

Only the BBC article writer happened to mention T3 therapy, but in a limited manner, as a “more expensive drug,” not mentioning anything about its greater potency and effectiveness in therapy.

These guidelines are part of a huge, systemic problem that all hypothyroid patients, not just those with subclinical hypothyroidism, face, with regard to our pharmaceutical options and the effectiveness of our therapy.

T3-based therapies were once the gold standard of thyroid therapy until the 1970s when levothyroxine took hold of the market and the minds of endocrinologists. Since then, the medical professions have made it difficult to reintroduce these pharmaceuticals.

Most hypothyroidism therapy guidelines deny T3 hormone therapy to the vast majority of patients. This is largely based on endocrinologists’ pharmaceutical prejudice against desiccated thyroid extract, fear of T3’s potency, and preference for synthetic T4.

As a result of these modern restrictions, patients are told that they can’t expect relief from symptoms and chronic health problems, only normalization of TSH, from today’s “standard of care.”

THYROID HORMONES ARE INEFFECTIVE?

Let’s think about this critically. All our advanced science and pharmaceutical technology assures us that even the synthetic thyroid hormones we obtain from pharmaceuticals are truly bioidentical to naturally secreted and converted hormones. So, why on earth would they all be ineffective in therapy for people who can’t make enough thyroid hormone?

Obviously we’re not getting the right combinations, ratios and amounts of thyroid hormone. Something is wrong with the therapeutic system. Don’t throw out the hormones!

May we as patients point out the ways your system is rendering our therapy ineffective?

Medical prejudice against the larger T3-T4 ratio in an effective, historic thyroid pharmaceutical, desiccated thyroid extract, has led to a series of limited-ratio LT3-T4 combination therapy trials. Unsurprisingly, these limited ratios are limited in effectiveness at resolving hypothyroidism. These limited results have limited the number of T3-based therapy prescriptions. This has led to the removal of limitations on the market price of synthetic T3 (liothyronine), especially in the UK. And ultimately, this means that “costly” T3 is being denied to many patients.

If the system keeps on limiting access to thyroid pharmaceuticals and limiting its T3 ratios, what can they expect other than limited effectiveness?

If the tiny amount of T3 that has been permitted to date in clinical trials is going to be effective on any hypothyroid patients, why would it not be effective in the treatment of milder forms of subclinical hypothyroidism?

So now, it’s time for even more of a limitation.

Let’s make guidelines that use sweeping language that would damn ALL “thyroid hormones”, even T3-based therapies, to futility, and even worse, unmentionability.

DON’T LIMIT OUR THYROID HORMONES

This is a slap in the face of suffering thyroid patients:

“Thyroid hormones do not lead to important benefits for adults with subclinical hypothyroidism for quality of life or thyroid related symptoms including depressive symptoms and fatigue.”

No, we know this is false. We see something else among our peers.

Some thyroid patients have actually suffered long and fought hard to seek out and obtain a thyroid hormone therapy that is effectively optimized to our T3 hormone requirements.

Your increasingly restrictive diagnosis guidelines and your refusal to even mention the existence of T3-based therapy options are part of the system that is denying superior, effective therapy to millions of suffering patients.

52 Replies
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Thanks diogenes !

I'd like to buy that woman a pint!

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Unless of course she doesn't like beer ;-)

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I didn't specify beer! ;)

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A pint of wine then? Or whiskey??? :-D

We REALLY need some comic relief now!

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Sure, a pint of wine. Whatever it takes.

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my favourite tipple is lemonade and lime!

Loads of lime please!

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Ahhh common sense, the lunatics in charge of the asylum will never listen to that 🤬

It's so flippin frustrating as I just do not understand how these supposedly educated intelligent people can come up with such utter claptrap as the so called research and not see they're talking ****** polite words fail me.

Thank you diogenes , I wish I could be as erudite as the writer above and your good self

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Thank you. If only the medical profession did not have such appalling learning difficaultys they might be able to take on board but I doubt most of them would even be able to read this article.

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This is so scary. And, you have to ask the question: why do they hate hypos so much?

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More money to be made from antidepressants, pain killers, digestion drugs, skin products, diet pills, blankets, misery, quackery...

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It is more basic I think than that. It is mob rule done with a polite veneer of hocus science, we are defective in the same way as black people have been seen as or mentally ill people. it is contempt for lesser beings, fear of what is not understood. They are a ganging up on us, backed up and encouraged by anti thyroid propaganda. What they actually fear is probably the truth, we are better than them, we are more enlightened, intelligent,caring and if treated as equals they look poor in comparison.

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But it's more about the actual disease than the people that suffer from it. I don't know, I haven't yet found the words to explain the feeling I get from all this. It's almost punitive, like we need to be punished for daring to have this disease.

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know what you mean. Helpless anger and frustration at how we are being mistreated under the guise of right practice - but without even the pretense of actually caring for "The Patient".

I doubt if any of them are, or have close family suffering from hypothyroidism or they would change their tune

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Very often endocrinologists that have "seen the light " have close experience of friend or family and seeing just how debilitating inadequte Levothyroxine mono therapy can be, and the transformation when T3 is added

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I'd like to think that's true. But, I somehow doubt it. :(

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I feel it's punishment for daring to question their medical fallacies, & expexting to have control over our own bodies.

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Possibly. But it's far too wide-spread to be just that.

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The thing that strikes me about the attitude you describe, correctly, as 'punitive', is that we are mainly female patients who are speaking out. We have to remember that there is more than a faulty clinical paradigm at work here: social attitudes are highly relevant. 'Twas ever thus. Sadly, whenever I point this out, it is often a woman who will say, "Ooh I think that's a bit unfair", or "That's a bit strong."

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That's very true. We're our own worst enemies!

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Woman often are still uncomfortable with any notion that sexism may be affecting their health care. I don't mean to imply that we are to blame for our own misfortunes, just that we all need to be more savvy about the attitudes driving the medical profession to offer us such shoddy care.

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Indeed!

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There's the assumption we're hysterical & exaggerate symptoms, or we're silly women that don't know how to count calories & put on a jumper. >:(

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True. Women are routinely gaslighted by the medical profession.

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You are dead right Hillwoman.

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I think they fear the actual disease simply because they don't understand it. That's why they so desperately clinging to the TSH dogma. Take TSH away from them and they have nothing. They don't know how to diagnose it or treat it or what the disease does to the body. TSH is complete BS of course but they can't admit it as without it they would have to start from scratch. Someone f...ed up few decades ago with the tsh and who knows how many people died as a consequence and us hypos are just unpleasant reminder how incompetent they all are.

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Yup. That's true, I know. But, even so, the attitude is so… hateful. Like we were out-casts from society, bent on bring society down. I don't know. They make you feel like the proverbial leper at times.

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I think it is about silencing women.In the same way as Valium prescriptions were given on mass in the sixtys to women who dared to get upset about something we are being kept quiet by our illness. There are I am sure lots and lots of doctors who are unhappy about it but the medical profession is so over paid and ridicuouslously esteemed that very few of its members will rock the boat. I remember a consultant psychiatrist saying to be 25 years ago that she was sick of mopping up the mess left by endocrinologists. I have met a few doctors over the years who know that thyroid care is very poor but none of them have prescribed hormones they have just given antidepressants instead, kept their heads down and quiet. You can find an anti thyroid doctor and avoid quite easily by their attitude to weight. I am sure this is to silence women. David Icke would claim it is down to the aliens from Saturn and it does begger belief and however crakers David Icke might be he talks more bloody sense than most endos.

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You could be right. So could David Icke. :)

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It's other chronic illnesses that make us feel "unclean" in that respect, the visible & invisible ones.

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Many thanks for sharing the review, the subsequent comments on very sloppy journalism from the BBC, Daily Mail and I'm sure there will be more jumping on the press bandwagon, balanced with a few words of wisdom from a Canadian angle back towards the original BMJ review. I will be flying the maple leaf in solidarity with the voice of reason from across the Atlantic but I fear what lies beneath these news headlines may be an early signal of the direction of travel for the new NICE Guidelines. I hope not but share some of your earlier concerns and misgivings particularly considering some of the names on the review panel.

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I’m with you Mark - see my post below. 🇨🇦

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Don't have a flag handy, though I shall eat maple syrup which tastes better! :)

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Diogenes, thanks for posting this. As one living in Canada, thankfully our MDs and endos here do not prescribe (literally and figuratively) to the nonsensical philosophy advocated and reported by the BBC - clearly none of the reporters or those participating in the study - suffer from any form of thyroid disease - or they would be racing to their doctors and the first to advocate for treatment. So far we in Canada are lucky about that.

However, here in Quebec, as of last December, only endos can request T3 tests! If there are fellow Canadians on this forum, please scream long and loud about this to your local hospitals. I have already complained to the hospital where I am treated about this.

I only found about it by accident because I had asked my GP for a blood requisition - I had misplaced the one my endo gave me with all the tests. When I went to the test center, the tech said , can’t do the T3 without authorization. I made a polite fuss (we Canadians are nothing if not polite even when screaming) since I have been tested for T3 for the last 23 years. After a 10 minute wait (after already waiting) was finally “given permission” because I was going to the endo and had extensive records showing I was always tested for all the thyroid hormones.

We Canadians cannot be complacent - let’s stay vigilant and make sure our health care orgs know we are watching.

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What a superb response. Bravo to that lady.

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Thank you for this - a well written and incisive response.

Rather than constantly investigating numbers, measurements and figures, I wish they’d spend more time looking for a cure or how to prevent it in the first place. So many people seem to be hypo - I never knew until I was diagnosed how many people it affected. Seems like a malaise of modern life.

They’d be better off asking why a bit more and trying to prevent it than bleating about figures and trying to mess with diagnosis. 🤸🏿‍♀️🥛

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It really doesn't bear thinking about the state so many more of us would be in,if not for the self-help movement & Thyroid UK & its forum in particular.

I have had both an endo & a GP insisting I go back to thyroxine-only if I want them to monitor my thyroid replacement-by which they mean check my TSH & tell me any symptoms I have aren't thyroid symptoms because my levels are in range.

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Just thought that I'd share a response from BTF to the hive of press comments on the "over-treatment" of sub-clinical Hypothyroidism.

"Some recent media reports have suggested that patients with hypothyroidism may receive no benefit from levothyroxine. Please read our short statement which seeks to clarify some of the facts which were presented."

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I hope that they are also responding to official broadcast channels and media to challenge their coverage of what is a much more complex and dynamic science that needs to be tailored to patients' needs and not solely based on any "normal" statistical mean test!

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We live in (rather sceptical)hope

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Well said I like the clear and compelling explanation. Thanks for sharing.

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Thank you for posting such a compelling response to that stupid document written by fools.

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hi Diogenes

is there any chance of including the author's name?

it may very useful to ask her to use her response here and put it in the rapid response section on the BMJ article. Or receive her permission to adapt it and post it ourselves?

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It's Tania Sona Smith an Assistant Professor I think in Calgary.

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Go to thyroidpatients.ca and scroll down to Who are we? to see info about Tania Sona Smith

Here's the link to the blog article that diogenes has quoted thyroidpatients.ca/2019/05/...

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Canadian thyroid patient site on face book and twitter have some great articles and I’d encourage all to join the groups

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Yes, a very good group. They have been supporting other groups in this country too. This is not just a UK issue, it is the attitudes of medicine around the world that need to be addressed. Was it last Oct, or Oct 17 that Sir Malcolm Grant was in Canada discussing their 'deprescribing' and saying that they should not call it depresecribing as patients were misinterpreting this to mean having mediation taken off them?

How silly of patients to think it meant having medicine taken away. I wonder whatever brought them to that thinking? NOT!!

Much of the problems we are facing is in the whole set up of medical research and the way it has been used and abused over time. Has anyone read 'Can Medicine Be Cured?" by Seamus O'Mahony? A gastro specialist at Cork Uni. (no doubt due to retire so speaking out) A good read, don't agree with all he says as he does say that there are no modern day illnesses, since the eradication of those caused by environment, poverty and poor hygiene. I think he needs to consider the modern day environment, the increasing use of chemicals and such and radio/micro waves etc, I suspect we have not really seen the effects of these things yet. Maybe they account for the nearly half of GP appointments that GP's do not know what the problem is.

What he does seem to be saying, to me anyway, is that research is a waste of time as it is not conducted properly, (something we all know already!) there is always an influence, who is paying for it, what is the hoped for outcome. Who is conducting the study and what is their motive?

What happens to the research studies on completion? Replication is called for, it does not happen.

O'Mahony refers to this unsubstantiated research as bricks laying around the yard. No use. These 'bricks' are, in my view, only picked up to be used to back up further biased opinion, without it first being examined in light of more current knowledge, even thought summaries were never confirmed.

The other analogy is that the brick wall they are intended for, is never properly built, leaving gaps in medical research that are never filled and as time goes on, the medical wall of knowledge is built using weak bricks and leaving many gaps and holes that weaken the whole of the medical knowledge banks. These gaps and false summaries, in themselves, cause misunderstanding and compounded weakness in further studies and knowledge.

As we know, we are tied to research that is peer reviewed and published. But how much of this research is replicated? Who is reviewing this research prior to publication? What are their biases? Look at the rubbish that Pearce spouted to Midgely et al which stopped them getting their work published in the BMJ? Where was his considered scientific evidence to back up his diatribe and stop publication? Why is this one man's opinion so much more important? His was an angry and bitter retort only, at something he did not personally agree with? Question is - what is his agenda, to be so blind to current knowledge?

Has this sort of peer review always been the case? If so, surely the acceptance/or not, of published research, in this manner should be questioned. And the whole process of getting this rubbish overturned when new knowledge comes to light, has to change. We know funding to conduct research is not there, to be able to affect change.

Something has to change. Any research has to have integrity. It has to be overseen by an unbiased 3rd party. It must be independently reviewed and replicated prior to publication, or at least before it can be accepted so widely.

Sorry for rant.... find it so frustrating that we are held to ransom by etiquette and what amounts to corruption.

linda96

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I believe diogenes mentioned Pearce is a member of NICE - and I think it has been mentioned before that over 80% of members there receive payments from Big Pharma. Surely that wouldn't influence him would it ?? :-(

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I believe Pearce is sitting on the Thyroid Disease Committee too. No Bias there then!

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"Sir Malcolm Grant was in Canada discussing their 'deprescribing' and saying that they should not call it depresecribing as patients were misinterpreting this to mean having mediation taken off them? "

I wonder what makes him think we are MIS-interpreting? :-/

Newspeak, anyone?

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Exactly!

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And so say all of us who become aware that we too are living examples as our quality of life diminishes with ineffective T4 monotherapy..

Thanks for posting Diogenes.

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