I was looking into what research has happened by endocrinologist in my area, and found this latest one. They conclude that thyroid’s patients dissatisfaction with treatment and care is due to somatic symptom disorder!
Infuriating new research -sorry just sharing my... - Thyroid UK
Infuriating new research -sorry just sharing my frustration
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Dandelions
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yes ... it's not good for the mood is it .. it has been ranted about previously .
first they annoyed us with the type of questions (with 'correct' answers) on their survey, then they annoyed us even more with what they used if for.
previous (extensive) rants and other info about the original survey and who wrote that is here : healthunlocked.com/thyroidu...
or .....
you could just ignore it, since its written by such a biased clique and go for a nice walk and have an ice cream instead .. which is what i'm about to do 
Well if that is the case by the same token we don't need doctors at all, just put the world on anti-depressants that should sort medicine.😍
Oh well, if they are stuck for an answer they have to blame somebody, so it might as well be the patient....
I agree with tatty....ignore it.
If you need advice post here, the collective experience and knowledge of members far outweighs that of medics who have had no lived experience of thyroid disease.
Also, when answers are not forthcoming ...they need to look more closely not only at glandular hypothyroidism but also at cellular hypothyroidism.
But that's another rant...and one of my hobby horses!!
I'm off to have some ice cream too!
tattybogle DippyDame Such thoughtful, but levelheaded replies from you both. You’re right of course! I had missed the previous rants. But yeah… Ice cream! 🤗🤗 Thanks guys. Thank goodness for this forum🥰
Tony Weetman is one of the authors - enough said.
Yeah I’m only just finding out about the names of these ‘experts’.
Who's he when he's at home?
One of the leading proponents of hypothyroidism and somatization. Dr P wrote the following about Weetman's views:
There’s several correlations there that they ought to have investigated further. They say somatic disorders correlate with T4 treatment only, not combination, T3 or NDT treatment. Surely then this should be investigated?
And, yes, fine, it’s all in my head that I’m tired, that there’s pressure in my neck, that my nails are breaking left, right and centre, that I’ve always been hairy but now don’t need to shave legs or pits more than once every few months (sorry tmi), that my kidney function is lower than they were expecting (unless I drink an absolute ton of water), that my cholesterol which they said would come down with the levo has actually still gone up. So it’s in my head. I’ll accept that, so long as they then agree to refer me to a psychiatrist, one that knows about the link between low T3 and psychiatric issues, one that can provide a trial of T3. Please?
Yes I noticed that too. There seems to be a lot wrong with the interpretation of the results as well as the validity of the whole thing by choosing a scale like PHQ-15 , but it’s hard to say without being able to read the full article. 🤷♀️
True scientists, with a real interest for research would apply the questionnaire, identify the 10-15% and then invite them to a double blind trial, placebos vs T3, check bloods but change dose over, say, 6 months based on responses to the questionnaire being repeated. It might shed some light on current protocols. If everyone improves then they’re right, it’s all in our heads; but if one group improves more or less than the other it would make a big change to how thyroid issues are treated.
15% is 1 in 6-7 patients. This is not an insignificant number.
Dosage is absolutely critical too. It’s another area of presumption by medics. I just would not trust any research that did not include real life referencing to dosage. Without dosage consideration the research is always going to be incomplete.
Until they accept and understand that T3 is key and affects every cell in the body then nothing will change.
I need high dose T3-only to function, I had to do the research and medicate myself because medics maintained LT4 should suffice....it nearly killed me!
I also had to work out that I have a form of thyroid hormone resistance which is overcome with supraphysiological doses of T3.....that was rubbished by my endo who spewed out scaremongering tales of heart attack etc.....you will know their spiel.
Most of my many symptoms experienced over decades have been resolved or greatly improved. Not all, because the damage done over, most likely a lifetime, partially remains.
They are looking in the wrong places and extrapolating. only the wrong answers!
The brain and the heart need huge amounts of T3, every cell in the body needs relative amounts...... if that is not available the system suffers...we suffer!
For most people the thyroid system is self controlled, and works.....but for the rest of us, "this little white pill" aka levothyroxine is sometimes not enough.
This cohort need more understanding.
Ultimately the answer lies in the cells....but there are no tests to measure cellular T3 so treatment has to be based on good old fashioned robust clinical evaluation.
Neither that, nor the timescale to recovery, is currently understood, acknowledged or deemed important.
So....it's said to be all in our minds and given fancy names!!!
Nonsense!!
It’s sad to read and more so knowing it’s so many people’s story that something could have been done earlier to help you and you’d might have had better health now. But well done about taking control and not giving up. It’s hard to do when you’re unwell.
It’s interesting to hear you mention cellular hypothyroidism. Do you know if there’s any research being done in that area? Are there specific problems with developing cellular level tests or is just something nobody has looked into yet?
A résumé...
rejuvagencenter.com/thyroid...
Re testing...
I gather the problem is that because different tissues in the body require different levels of T3 ( eg the brain needs lots) it becomes difficult/ impossible to set test parameters.
Ankle reflex relaxation time, which can be measured using a kinemometer is said to correlate well with the severity of tissue hypothyroidism. Unfortunately, this clinical tool is underutilized in clinical practice!
It's not something I've pursued because I've use symptoms to monitor.
Also, since the numbers involved are perceived as low ( though in reality probably higher) it probably isn't considered a viable research project.
Dandelions a post about ankle reflex relaxation time ( kinemometer) healthunlocked.com/thyroidu....
The practical problem with real cellular level testing (eg how much T3 does my heart wall cell have vs how much T3 does my brain have ) is that you 'd have to do a biopsy to get the tissue sample every time .. so, obviously it's not happening at all outside of research settings (and even then , not very often in humans , more often it's the kind of research that involves 'first kill the mouse/rat......' )
eg this well known one :
jci.org/articles/view/118353 Replacement therapy for hypothyroidism with thyroxine alone does not ensure euthyroidism in all tissues, as studied in thyroidectomized rats.
H F Escobar-Morreale, M J Obregón, F Escobar del Rey, and G Morreale de Escobar Published December 1, 1995
Exactly!
tattybogle DippyDame
Fascinating! I had no idea something as seemingly unrelated as ankle reflex could be a good test for thyroid functioning. Why does that work then?
As well as the info on cellular level thyroid levels and the research by Escobar-morreale is very telling, too. It’s almost like the information is just out there 🙄.. while ‘experts’ choose to ignore it. Anyway, at least we can educate ourselves with the good work of these people in the past.
The reflex relaxation 'delay' .. i think ? this is (partly ?) because muscle fibres don't just use energy to contract .. they also use energy to relax/ lengthen again....( can't remember where i read that , but i did) ..... so if there's not enough energy in the muscle cells the relaxation phase is going to be slower because the muscle fibres will stay shortened for longer, which physically slows down the return of the ankle to the resting position ? kind thing ..
and conversely in hyperthyroidism / overmediation,....the reflex mechanism is observed to be exaggerated / larger / faster.. ? possibly too much energy in the cells causes bigger initial reaction ?
i've never had a proper ankle reflex test with a machine , but at diagnosis my GP had a go at it 'by eye' and it seemed slow to him, which did make him test thyroid antibodies even though my TSH was only 6 ish and i wasn't overweight .... they were >3000 [0-50]
and when i was overmedicated , i was literally jumping out of my skin at noises inthe street.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
It’s almost like the information is just out there 🙄.. while ‘experts’ choose to ignore it.
That is exactly what is happening . anyone with any interest at all can easily find this stuff .. the problem is that the endocrinology profession in general is not particularly interested in doing anything with thyroids , apart from exiting stuff like cutting them out /irradiating them ....but anything else (like figuring out how thyroid hormone replacement actually works in the individual body, why it seems to work so differently in different bodies , how to replace the hormone in a way that makes these different bodies work properly again ... that is all considered very boring.. it's much easier for most of them to believe there is no problem with standard Levo /TSH based therapy, and the only patients who are moaning about it are the type of people who will always be moaning about something /anything anyway.
Woltmans Ankle Reflex
yes that, thanks SJ X
until I started T3 my Achilles were rock solid….. I could barely put my foot to the floor when getting out of bed 🙈
Deja vu here. I know I have read this before and with the references by you. However just realised on re-reading this post that whilst I was aware from the previous post, I don’t know if I came to the conclusion that this is also the perfect description of my heart symptoms (including chest muscles too). I may have understood this before but if I did I have forgotten it. Thank you for highlighting it again. I wonder how many times I have to read this to totally comprehend it. Thankfully many explanations come up again and again. And thankfully it’s amongst friends, otherwise I would be accused of being somatic.
p.s Dandelions re. 'seemingly unrelated' to thyroid .
once you realise that thyroid hormone receptors are widely expressed in all tissues, therefore thyroid hormone is used by virtually every cell in the body to make that particular cell function ... you realise that hardly any process of the body is 'unrelated' to thyroid.
Yeah makes sense. And it is how it feels.
Thanks for the post. I only know that when my FT3 is over 6 I feel really well, no pains etc.etc.
When I started falling down back last Sept and vision problems too I checked my FT3 and it was 2.76 due to a bad batch of NDT. These are facts not fiction. Easy for me low FT3 bad higher FT3 good. Simple.
It worries me, who in the hell is paying these people and their research because they are simply wasting their money.
yeah.. it’s probably us paying for it.. isn’t it….
Exactly right
is it any wonder we have little faith in our health service with claptrap like this! After 2 years of awful symptoms+pain+ monthly visits to my surgery (thyroid blood test was ‘within range’), GP thought it was all psycosystematic! I had a private consultant visit and 3 weeks later was having thyroidectomy +biopsy revealed Hashimotos! Things have not improved it seems when it comes to hypo or hyper issues and GPs listening certainly has not improved! That’s why we must look to our own health, get good support from Thyroid U.K. , get private blood tests as we require them +challenge GPs! We are all unique and one size does not fit all!
Yes, it’s an awful situation. But it’s all we got. And it sounds like you’re on the right track, which is great! One size certainly doesn’t fit all and I’d love to be able to talk to an expert who truly listened and came back with an informed and personalised plan.
I did have faith in our health service, which is why I believed one of the authors of this research when they ‘treated’ me..even though it didn’t ring true. I wasted four years muddling through life. I eventually saw a psychologist instead who told me I was too hard on myself. So I realised if it wasn’t in my head, I should look back into thyroid issues and luckily found this forum. I’m still trying to keep my GP on my side, so things are moving frustratingly slowly, but the difference in my life is miraculous. I can’t describe it any other way.
The worry is that these people will succeed in convincing so many patients its psychosomatic.. when there is something that can be done to improve their lives and health.
laughing ... 60% of ALL women are on some type of thyroid med, and a much less % of men, but of course we are nuts anyway. What they can't figure out, or even bother to study, makes us the crazy ones. Still laughing. Sorry. Hey wait for me you're walking too fast, I want chunky monkey please ...
new rules ...... everytime they publish rubbish like this we all get to have an ice cream.
Did you just take out shares in an ice cream company?
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