This December 2020 paper was on the BTA Twitter feed, but it's behind a paywall. "Dissatisfaction with Hypothyroidism Treatment Is Associated with Patient Expectations and Prior Health Care Provider Experiences" Can anyone access it free? It looks an interesting read. liebertpub.com/doi/pdf/10.1...
Thanks to jimh111 I have a link to the full paper. Yes, it seems that patients are at fault!
Google Sci-Hub and enter the 'doi' reference to get the full paper.
Using my mobile, so can't give a direct link.
Sci-Hub is fantastic.
jimh111 many thanks - I've got it via Sci-Hub. Though now I've read it I'm not impressed!
Thanks for the tip!
So it is the patient's expectations that are at fault then. Amazing.
As a side note, paying for research papers in the country was pioneered by Robert Maxwell in his Pergamon Press imprint. Ultimately taken over by Elsevier in 1991.
So.....Thanks to jimh's 'way in' to full text. (Thanku jimh111)... I just had a poke around, looking at the origins for this opinion by Mary H Samuels .
She reviews a paper done by others about an online satisfaction survey from the British Thyroid Foundation;
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"Dissatisfaction with Hypothyroidism Treatment Is Associated with Patient Expectations and Prior Health Care Provider Experiences.
by Mary H. Samuels.
(Review of: "Patient satisfaction and quality of life in hypothyroidism: An online survey by the British Thyroid Foundation." Mitchell AL, Hegedüs L, Žarković M, Hickey JL, Perros P . Clin Endocrinol (Oxf). Epub 2020 Sep 26. PMID: 32978985.)"
.
And she comes up with this conclusion.......
"The underlying causes of these persistent symptoms are not clear; one hypothesis is that
lower intracellular T3 levels in these patients leads to tissue hypothyroidism (2). ON THE OTHER HAND, OBSERVATIONAL STUDIES HAVE SUGGESTED THAT PATIENTS'
PERCEPTIONS ARE INFLUENCED BY THE KNOWLEDGE THAT THEY HAVE A THYROID CONDITION (5), and blinded intervention studies have not shown improvements in QoL or symptoms when L-T4 doses are increased or L-T4/L-T3 combination therapy is substituted for L-T4 monotherapy (6-9).
This raises the question of WHAT FACTORS OTHER THAN TREATMENT EFFICACY may impact satisfaction with treatment and QoL in hypothyroid patients."
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So... i looked up her reference for this Statement (5).... and found;
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"A paradoxical difference in relationship between anxiety, depression and thyroid function in subjects on and not on T4: findings from the HUNT study
.
Vijay Panicker 1, Jonathan Evans, Trine Bjøro, Bjorn O Asvold, Colin M Dayan, Ottar Bjerkeset"
"How can the difference in the relationship with depression and
anxiety in patients on T4 and not on T4 be explained? One possibility
is that subjects on T4 who are more depressed take their medication
less reliably and hence have a higher TSH. In addition, subjects with
a known diagnosis (e.g. hypothyroidism) are more likely to notice
and report symptoms (as seen with hypertension30,31). However, a
biological explanation is also possible. In some subjects, genetic
variation might result in impaired action of T4 in the brain, for example
because of reduced transport into neurones32 or local deiodination.
Such subjects are likely to tolerate minor degrees of hypothyroidism
less well, come to medical attention because of symptoms of anxiety
and depression, and be started on T4. As a result, these subjects
would be expected to become overrepresented in the population on
T4, resulting in a different relationship between depression and
thyroid function in this population. Support for this latter hypothesis comes from the recent observation of common functional polymorphisms in deiodinase enzymes and transporters, which influence
circulating thyroid hormone levels33 and possibly also mood.34,35
Further research is required to determine what role each of these
possible mechanisms plays."
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As far as i can tell, Mary H. Samuels title "Dissatisfaction with Hypothyroidism Treatment Is
Associated with Patient Expectations and Prior Health Care Provider Experiences." uses the term 'prior health care experiences' to mean only 'we have been diagnosed with hypothyroidism'.
I read her review to be mostly saying that in her opinion people who have been diagnosed hypo are more likely to be saying they are 'dissatisfied' simply because they know they have a health condition and take a tablet for it..... but the reference she uses for this actually had a much more comprehensive opinion on the possible causes of dissatisfaction.
The part about 'Patient Expectations' also got up my nose a bit...
" There were 26% who expected L-T4 to resolve all their symptoms, and 93% expected that
symptoms would resolve within 3 months after starting treatment.".... She seems to be saying that these are unrealistic expectations , and it is because they are not met that we are dissatisfied... but aren't 'they' always telling us that once treated with Levo and TSH is back within 'normal ' range all our hypothyroid symptoms will be resolved ?.... so this is just one more way of saying "TSH is normal now, so anything you say you feel is due to something else"
I think it's time for a paper entitled " The Prior Intentions of the Writer are Associated with their Interpretations of Reference Material They Use"
I had lot's more not very complimentary thought's about her paper along the way.... but i've forgotten them ... c'est la vie.
Someone else on the forum pointed me to Sci-Hub - I can't remember who!
linda96
Yes, it seems that patients are at fault!
Always. The question is whether the doctor actually says that to you or simply acts as if it is the case. 
(Facetious comment, of course.)
Even if a genetic polymorphism is found, it is all too often described as a faulty gene. Wording to which I take exception. It is a different form of the gene. It might be a new variation (there are lots of possible causes). Or inherited.
To point a finger and declare it faulty is very often unwarranted. The human population exists as it does due to the accumulation of changes at every generation. Whether these are determined to be beneficial or not is very often simply not something we can assess in the shorter period. (Where a single polymorphism causes obvious health and well-being issues, we probably can define it as "faulty". Otherwise it is more subtle.)
Perhaps the DIO2 polymorphisms often mentioned regarding T4 conversion to T3 actually confer some benefit? Many have no idea they have the polymorphism until they need exogenous thyroid hormone. Could there actually be some benefit(s) from the polymorphism.
Think discussions about the association between genetic red blood cell issues and resistance to malaria. Which is faulty? The one that causes different red blood cell shapes or the one that allows malaria to kill?
People with a DIO2 polymorphism take a little more T3 from the blood than others. Thus, if they are not given any T3 they will fare worse but if there is severely impaired conversion I would expect them to do a little better because they are not so reliant on conversion (both will do badly). Swings and roundabouts.
In reality we can't always distinguish "chicken versus egg" arguments and safely come down on one side or the other. This paper links depression to thyroid function and shows it is quite as likely that the depression or other problems like cardiovascular risk can be caused by changed thyroid/body function rather than the other way around. The link between wellbeing and treatment is really a can of worms, and one shouldn't firmly suggest that "it is all in your head". Inadequate dosing (wrongly sticking to TSH must be normal for an adequate dose regardless of anything else) and poor conversion of what otherwise would be an adequate dose are two factors in the equation. Once again we find writers falling into the categorisation fallacy of diagnosing individual patients from the whole generalised panel.
PERSPECTIVE ARTICLE
Front. Endocrinol., 26 October 2020 | doi.org/10.3389/fendo.2020....
The Two Faces of Janus: Why Thyrotropin as a Cardiovascular Risk Factor May Be an Ambiguous Target
Johannes Wolfgang Dietrich1,2*, Rudolf Hoermann3, John E. M. Midgley4, Friederike Bergen5 and Patrick Müller
In my own practice, I am careful to set reasonable expectations before I prescribe L-T4 for a hypothyroid patient. I explain that many symptoms may not be related to their hypothy-roidism, since they are nonspecific and common in other conditions.
I think I would argue that it is unrealistic of doctors to assume that hypothyroid patients have multiple health conditions when they can often be explained by being hypothyroid.
I wonder how many doctors are aware that a common effect of hypothyroidism is to reduce stomach acid, and hence reduce nutrient levels and cause multiple gut problems. And reduced nutrient levels have many, many symptoms. But the initial problem was triggered by being hypothyroid.
Doctors simply don't know what many hypothyroid symptoms are. I remember reading, several years ago on this forum, that a member had been told by her doctor that fatigue wasn't a symptom of hypothyroidism. I think of all the bullshit that doctors come out with in connection with the thyroid that was one of the most shocking things I've read.
agree totally.... there was one report of a doctor saying "Thyroid has no effect on metabolism" !!
I wonder if anyone has asked one of these clueless doctors what they think the thyroid actually does?
Obviously... when it 'grows' it exudes a substance that turns people lazy ........and when they cut it out she's cured.
.......Simples !
My GP kept telling me i didnt have a thyroid problem as it had been removed, I repeatedly told him I hadnt been well since the operation. I asked about medication/levo but he said as the thyroid was no longer there there was no need for thyroid meds!!
So he thought of the thyroid as being a bit like the appendix?
I hope you complained at the highest levels! He was killing you!
Yes I took my GP and the local endo dept through the complaints process all the way to the ombudsman, my complaint was upheld, for what good it does! endo dept was told to do further training (doubt they did) they were told to write an apology (they didnt) my GP closed 6 months later. Not worth the effort and stress of complaining.
I wonder what the further training would have involved..... "The thyroid gland is a small butterfly shaped organ found only in the neck of hypochondriac women" ?
That about sums it up! one of the endos said i just needed HRT!! it is really scary that these people have the authority to ruin lives.
I wish i could figure out a way to get paid that much for spouting bollox.But i'm Altruistic , so i usually do it for free
"Trust me ... i'm a Doctor "
yeah ... right
Those were the days.
These days i'm not sure i'd believe a Doctor if they told me i was alive.
But just when were those days? I'm sure I've heard that there were plenty in the generations before us that also didn't trust conventional doctors.
I must have got lucky ... i was diagnosed even though not overweight, because NHS GP scratched his head and tested my ankle reflex and then ordered TPOab.
But having said that, you're right ... my dad always referred to the doctor as "The Quack".... at the time i thought it was a term of endearment , but now i think about it, i'm not so sure.
I have mentioned The Citadel by AJ Cronin more than once here. First published in 1937 and is very clear about the state of medical practice then. Pretty much, highly exploitative private care or next to nothing.
healthunlocked.com/thyroidu...
Still I recommend it as a read for anyone who thinks they might be interested.
I read that years ago, but have forgotten it now. Might have to re-acquaint myself with my bookshelves and read it again!
I really liked The Citadel. I think I have it on my Kindle, and its time to read it again.
I remember a story from it quite early on in the book, about the doctor blowing up some leaking, unsafe drains to help reduce illness in the district.
I must re-read it.
My father used to describe doctors as glorified mechanics.
If i was a mechanic i'd be insulted
Mechanic's usually manage to fix the problem.... even if they have to resort to a big hammer and gaffa tape.
And their best diagnostic skill is listening to the engine........
Vehicle mechanics do still work this way but nowadays they're more likely to get out their digital gizmo, connect to the engine and announce that the computer diagnostics have detected no problem at all. So we just have to go away and pretend that all those engine-related malfunctions exist only in our heads. Sound familiar?
Maybe someone will start pushing CBT for malingering vans.
I had an ex police van once, it was definitely taking the P***.
Whenever i took the key out , the engine kept running, but whenever it saw the Auto electrician it behaved properly , so i'd go home , where upon it kept running with the key out again.
It did this without fail for about a month.... So the Auto electrician thought i was completely barking.
I think the police mechanics mess up the computers on purpose before they send them to auction... i've had 3 , all with the most ridiculous problems.
Ah, the notorious "intermittent fault". A bit like the set of snapshot blood tests which are applied to the patient in perpetuity. "Look, we've done all the tests we're going to do, and they're all you'll ever need, so get lost."
We've had a fair few vehicles that enjoyed persecuting us - sudden, painful juddering; a lurch here and there to keep us alert; all manner of hideous noises - but never an ex-police job. Yours might have been the subject of poltergeists summoned by juvenile delinquents, or axe murderers...
Yes... annoying , and a bit unnerving to think what they'd been used for....... but always raised a smile to know that i was using a riot van to take 'fluffy' nuisances to play with the coppers .... lol.
And they make excellent campervans.... they leave the puncture proof tyres on , and the windows are brickproof ...literally. One even had a gizmo for washing paint off your windscreen without having to get out.... never found a use for that tho'.
One of mine used to make a 'Moo' noise at random...park in field... have a cuppa...'Mooo' ...never got to the bottom of that , but it was hilarious.
