I have been dipping in and out of the odd paper and reading lived experience about 2 years and feel I have just enough under my belt to start on something a bit more substantial. I want to start a desk study on the issue of TSH. I need to go back to the start though - I have a feeling this is essential, so if anyone knows of the seminal paper or few papers that started this crazy ball running I would be eternally grateful.
diogenes wrote some time ago about the quality of papers. I was wondering if there was a particular journal or two who are culprits? Who would be considered more (never totally) trustworthy - stuff always slips through the net.
- then finally patient satisfaction??? Do all medical disciplines produce stats and would they be comparable or at worse if not a standard format would there be enough to infer anything? Anyone know of any references???
helvella tattybogle sorry tagging you in but you post papers - please anyone reading this if you can think of anyone who might help me tag them in 🤗❤️
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Charlie-Farley
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seriously though .. what about poking around in the appendix(s) attached to the NICE thyroid guidelines .. can't remember exactly how to locate the appendix(s) off the top of my head ....but they do always list and reference the evidence they used to come to their conclusions ., it shows what the NHS based their low "TSH/ overtreatment" risk on .
When did they start doing blood tests? Then someone made a wild guess at the ranges, but unfortunately this was probably based on the general public including people who had thyroid problems.
Always been too busy reading lived experience and any bits of paper to stray further, but now feel a dire need. I have a look thank you for the heads up!
I think most of the original research was based on what happened to people who had untreated or undertreated hyPERthyroidism. Which obviously caused suppressed TSH.
What seems to have happened then is that some muddled up cause and effect. Obviously, over-production of thyroid hormones causes all sorts of horrible issues in the long term, including osteopenia and cardiac issues etc.
When TSH testing went mainstream it became a sort of shorthand for “suppressed means over-replaced with synthetic hormone”—which as we all know here isn’t always the case.
They muddled up the long term prospects of hypothyroid patients with a suppressed TSH (even though their FT3 and FT4 results would have shown them not to be over-treated) with the long term prospects of those who had untreated hyperthyroidism.
That’s why to this day some doctors will warn darkly that suppressed TSH is always a terrible thing and that they couldn’t possibly prescribe more thyroid hormones even though your FT3 and FT4 levels aren’t even close to the top of their ranges because you might end up having a heart attack or weakened bones…
To be honest, I think it is likely quite a crude reason, something like TSH too low +hyperthyroidism, thereby not a healthy state, and/or, when using thyroid meds, if the TSH goes too low, it means the pituitary isn't sending signals to they thyroid to fulfill it's function, thereby encouraging it to be "lazy".
To be clear, these are not my beliefs, just trying to retrofit some of the rationale we have all seen over time, cited in places like here.
To be honest, I think the teaching on medical schools on some of these potentially complex areas is scant, coupled with blunt diagnostic and treatment criteria means not all GPs have a decent handle on how things actually work, or not, as the case may be.
Wonky thyroids are not the only conditions to be afflicted by this situation, believe me.
Doctors associate a low TSH withhyperthyroidism which is not good for the heart and bones in both the short and long term.
But people with untreated hyperthyroidism will have a very low TSH PLUS very high Free T3 and Free T4.
People with hypothyroidism might have a very low TSH with Free T3 and Free T4 levels which are in range and fine for the patient. Even if the patient has Free T3 and Free T4 at slightly higher than healthy levels doctors just pay attention to the TSH and start panicking and telling patients they are going to die.
My pituitary is not good at producing TSH, and as a result my TSH has never even reached 6. But my Free T4 has been as low as 8% through the range, and my Free T3 has been as low as 11% through the range. Doctors thought this was fine. I've seen people quoting similar levels of Free T4 and Free T3 to mine before treatment and their TSH was between 10 and 30. But nothing about what I just said has any impact on doctors because they see a TSH just over the range and think I'm absolutely fine.
trail of NHS breadcrumbs back to the bit where the emporer, if not actually naked , is certainly "wearing clothes with big Holes in" at this point:
"CKS Clinical Knowledge Summary cks.nice.org.uk/topics/hypo... How should I manage a person with overt hypothyroidism (non-pregnant)?
MANAGEMENT
"~If symptoms persist, consider adjusting the dose of LT4 further to achieve optimal wellbeing, taking care to avoid over-treatment.
If a person has suspected adverse effects or feels more unwell after starting LT4 therapy:
Consider possible under- or over-treatment with LT4. See the section on Complications for more information on possible consequences of under-treatment.
See the CKS topic on HYPERTHYROIDISM for more information on possible consequences of over-treatment." .... ( by the way, this 'hyper link' then takes them straight to guideline for treating hyperthyroidism , which is of course intended for diagnosing / treating people who do not take LEVO , so the evidence base for that is going to be twisted too)
BASIS FOR RECOMMENDATION' (drop down box) uses supporting reference :
Layal Chaker, Antonio C Bianco, Jacqueline Jonklaas, and Robin P Peeters
Lancet Published online 2017 Mar 20. doi: 10.1016/S0140-6736(17)30703-1
"Treatment targets
Treatment targets include normalisation of TSH concentrations and resolution of physical and mental complaints, while avoiding undertreatment or overtreatment. "(reference 101)
"Overtreatment (ie, iatrogenic subclinical or overt hyperthyroidism) can have deleterious health effects, such as atrial fibrillation and osteoporosis, and should always be avoided, especially in the elderly and postmenopausal women. " (this statement is not supported by a reference)
ref 101 is actually ..... Guidelines for the Treatment of Hypothyroidism: Prepared by the American Thyroid Association Task Force on Thyroid Hormone Replacement
Jacqueline Jonklaas,corresponding authors Antonio C. Bianco,Andrew J. Bauer, Kenneth D. Burman,Anne R. Cappola, Francesco S. Celi, David S. Cooper,Brian W. Kim, Robin P. Peeters, M. Sara Rosenthal, Anna M. Sawka 2014
go to 4c. What are the potential deleterious effects of excessive levothyroxine?
■ Recommendation
The deleterious health effects of iatrogenic thyrotoxicosis include atrial fibrillation and osteoporosis. Because of these effects we recommend avoiding thyroid hormone excess and subnormal serum thyrotropin values, particularly thyrotropin values below 0.1 mIU/L, especially in older persons and postmenopausal women.
Strong recommendation. Moderate quality evidence.
Discussion of the clinical literature Unfortunately, many patients treated with LT4 are overtreated, based on subnormal serum TSH levels. In one study of older individuals taking LT4, 36% of patients over age 65 years had a subnormal serum TSH (233). Excess levels of thyroid hormones, especially levels that lead to serum TSH <0.1 mIU/L, have been shown in many studies to be associated with adverse outcomes, especially related to the cardiovascular system and the skeleton in older persons or postmenopausal women.
For example, in one study, patients older than age 65 with serum TSH levels <0.1 mIU/L, the majority of whom were taking LT4, had a threefold increase in the risk of atrial fibrillation over a 10-year observation period compared to euthyroid controls (234).
The risk for low bone density and fractures is also elevated in postmenopausal (but not premenopausal) women taking LT4 (235), especially if the serum TSH levels are undetectable (236).
The hazard ratios for inpatient admissions and deaths due to cardiovascular disease, dysrhythmias, and osteoporotic fractures were higher for those with suppressed TSH values in the same study of LT4-treated patients (236).
Balancing the risks and benefits of subnormal TSH values in individuals with differentiated thyroid cancer will not be addressed in this document."
look up ref 234, 235,and 236. .. check study details ,who they include / exclude, if any on levo , if fT4 tested ,etc ......they are almost certainly full of "holes of logic" and usually so old they will not have taken into account the concept of "the shift in TSH relative to T4 that occurs in patient on levo" .
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
reference 234 is: nejm.org/doi/10.1056/NEJM19... Low Serum Thyrotropin Concentrations as a Risk Factor for Atrial Fibrillation in Older Persons
Clark T. Sawin, Andrew Geller, Philip A. Wolf, Albert J. Belanger, Errol Baker, Pamela Bacharach, Peter Wilson, Emelia J. Benjamin, and Ralph B. D'Agostino November 10, 1994
N Engl J Med 1994; 331:1249-1252 DOI: 10.1056/NEJM199411103311901
this one does include some patients on levo but only about ?10% at the start of the trial ,and does include fT4 levels , but still looks like most are not on levo .. therefore this has probably skewed the results to look like ALL low TSH = increases AF risk . but you'd have to read it very carefully to pick it to bits.
Risk for fracture in women with low serum levels of thyroid-stimulating hormone
D C Bauer 1, B Ettinger, M C Nevitt, K L Stone; Study of Osteoporotic Fractures Research Group
haven't looked at this ~ can't be bothered and am about to go for a walk to look at the snowy peaks.
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236 .. Ah ha .. this is the one i link to all the time , that shows risks only increased when TSH was below 0.04 ... but 0.04 -0.4 has no greater risks than 0.4- 4 But this distinction between low but not supressed / and supressed is usually not pointed out when this paper is referenced to prove ' low TSH is risky'
pubmed.ncbi.nlm.nih.gov/199... Serum thyroid-stimulating hormone concentration and morbidity from cardiovascular disease and fractures in patients on long-term thyroxine therapy
Robert W Flynn , Sandra R Bonellie, Roland T Jung, Thomas M MacDonald, Andrew D Morris, Graham P Leese 2009 Nov 11.
This is fantastic - I've already come accross the 234 reference - I'll delve into the others next this is the particular issue i wish to get clear in my head next. Thank you so much for this 😘😘😘😘😘😘😘😘
the rather delicious irony is that 236 (Leese) it the exact same paper i used to get 'u no who' to let me continue to have TSH 0.05 if i wanted to. NICE cherry picked from it's conclusions to support their low TSH means your gonna die stance , but the full thing says different.
I have no doubt whatsoever regarding the calibre of those driving NICE Guidelines.
A little from my writing over the last couple nights - sneak preview, Re NICE NG145/1
“The committee notes the proportion of T3 to T4 is higher in natural thyroid extracts than produced by the human body and the adverse effects are uncertain.” However the ‘committee’ does not see their own contradiction in saying monotherapy with T4 alone is better? ‘Think Tank’…...
Issues about low TSH seem to have only been possible as the original, relatively insensitive, TSH assays were improved.
I suggest reading this article:
The History of Thyroid Testing
There have been long, sad and unsatisfactory developments in the history of thyroid testing, including up to the present day. John Midgley B Sc (Leeds), D Phil (Oxford) has written this summative article exclusively for Thyroid UK:
- that's going to have to be one of the first ones I tackle. I came across a paradox in a recent paper I just happened across and have to now hunt it down to it's origin. I'm doing research to try to concoct a simple guide/manual to getting well by being one's own health advocate, but to do that I have to get deep into the 'science' and be clear on it. Over simplification of complex issues can be a huge danger and if I do manage to pull this off I will need peer review at some point 😉(hint hint).
Yes Charlie-Farley . Probably the farcical over simplification of the TSH issue in the first place has led to where we are now. I really think this needs doing and it sounds to me like it is in excellent hands. All strength to your elbow (I think that is the saying).
Regarding poor quality papers in the thyroid journals. In every one, one can see regular deficiencies in some papers. Particularly frequent are multi-authored papers from China - there it is a rat race to publish often and compare everything with everything whether likely or not. This is particularly found in endocrine papers. The promotion of TSH above other tests came about around 1985, when the first sensitive TSH tests were produced that could distinguish hyperthyroidism from euthyroidism, Before that the TSH test wasn't sensiiitive enough (beginning early 70's). As soon as this test improved the dogma that low TSH was bad was lengthened to include T4 therapy. The belief was the hyper and T4 treatment states were identical. Now we know they are not, the dogma still will not be put to rest for quite a while as there would be egg on too many faces.
yes , my previous GP told me that "we can now reliably measure low TSH down to 2 or 3 decimal points , so it is an 'exquisitely accurate' test . ( and therefore couldn't possiibly be 'wrong' )
But just because a measurement is exquisitely accurate, the measurement still needs to be INTERPRETED correctly by a practitioner who is experienced in the behavioural characteristics of 'whatever you're measuring' .
i can measure a bit of canvas very accurately down to the mm with a tape measure , but if i don't take into account that canvas shrinks when wet ... my yurt covers will be too short in the rain...... and unlike the GP , i can't get away with saying "well i measured it with an exquisitely accurate ruler , so your symptoms of getting wet must be due to 'something else"
Thank you very much - if I get some useful one I can join the dots up (hopefully). I won't be quick but I will be thorough 😉👍 I haven't been this excited about research for about 20 years! I feel I have a purpose.
Mark Starr's book Hypothyroidism Type 2 has references to documents/papers from 1888, 1901, 1940s perhaps they will have or lead to some info. Martin Budd ND has references dated 1885.
Thank you for looking into this. I believe that the over-reliance of thyroid medicine on TSH is the single most important issue to resolve and a significant part of that is the unevidenced concern over low/supressed TSH on thyroid treatment. I suspect when the truth on this is more widely accepted, then we will start to see a shift towards symptoms/signs, ft4 and ft3 and a wider understanding of the complexity of the condition and patient needs. It will also allow the design of more sensible trials as the use of TSH as a measure of success is likely to be a limiting factor in many current studies.
Tattybogle’s reference list has some good references countering the TSH myth, but I want to deep dive into the scientific rationale for these TSH mythical assertions and try to track the science that way. So far, my initial feeling is that science left the medical building some time ago and because they are so separate and self fertilising they have passed on their biases and dogma which has been widely adopted with too little pushback or reevaluation. We will see…..
One thing that struck me some years ago was some work in,m I think, Sweden. Which showed that autoimmune deterioration of the pituitary was widespread. The effect would be (more or less) like mild secondary hypothyroidism.
Whaaa! Yes, that’s one of the questions I realised I needed to answer! Plus none of the thyroid (hypothalamus, pituitary disorders) are mutually exclusive though, would there be a cancelling out, additive, synergistic effect on the condition as the patient felt or as the blood profile read? And what about hyper hypo mix? So many possible permutations. The first one that comes to mind is Hashimoto’s and secondary hypothyroidism mix confounding blood results.
Something is always rare if not looked for.
I read like billio for a week then my brain was so on fire I needed to stop. This week, every morning I woke up with a new question. I’m making a massive board to stick them all on and next phase is to read for each question. I know there will be overlap and revisiting of sources as well as new ones. I have to break this down. How to eat an elephant- one bite at a time - not that I would. 😊👍
Thanks, yes I realise you are interested in that particular angle and agree it would be useful to understand. I suspect it is based on early false assumptions that have been shared around and taken as truth and followed up by later poor studies that have largely failed to differentiate between those who are genuinely over-treated with greater risk and those who are not. It might be worth asking Tania Smith of Thyroid Patients Canada as she has done a lot of historical digging. I am not sure if there is something useful in this reference list thyroidpatients.ca/2019/07/.... The Fliers et al 2014 has a little history in the intro. thyroidpatients.ca/2019/09/... may also provide some insights. Thanks again and good luck.
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