This recent paper clings on to the somatic disorder diagnosis of some hypothyroid patients. The problem for me is: how do they assess so called SSD and on what basis. If it is "TSH in the reference range = satisfactory treatment" then this diagnosis completely refuses to countenance that normalised TSH is not necessarily a satisfactory outcome and patients have no right to complain if they feel ill - it's your fault for being distressed etc. There are several more papers but this is from the original "horses mouth". What it boils down to is to try to rescue the TSH story so as to brush aside anyone still feeling ill with "normal" TSH and seemingly adequate FT4 levels (no FT3 mentioned). They still diagnose by categorisation, even though personalised diagnosis is a paramount requirement. The gulf between their thinking and modern revelations is striking. Note that this didn't apply to combination, T3 or DTE users and yet T4-only's were most at risk - well, who'd a thought it?.
Thyroid
. 2023 May 3. doi: 10.1089/thy.2022.0641. Online ahead of print.
Hypothyroidism and Somatization: Results from E-Mode Patient Self-Assessment of Thyroid Therapy, a Cross-Sectional, International Online Patient Survey
Petros Perros 1 , Endre Vezekenyi Nagy 2 , Enrico Papini 3 , Christina Maria Van Der Feltz-Cornelis 4 5 , Anthony Peter Weetman 6 , Harriet Alexandra Hay 7 , Juan Abad-Madroñero 7 , Amy Johanna Tallett 7 , Megan Bilas 7 , Peter Lakwijk 8 , Alan J Poots 7 , Laszlo Hegedüs 9
Affiliations expand
PMID: 37134204 DOI: 10.1089/thy.2022.0641
Abstract
Background: Between 10% and 15% of hypothyroid patients experience persistent symptoms despite achieving biochemical euthyroidism. Unexplained persistent symptoms can be a sign of somatization. This is associated with distress and high health care resource use and can be classified as somatic symptom disorder (SSD). Prevalence rates for SSD differ depending on classification criteria and how they are ascertained, varying between 4% and 25%. As this has not been studied in hypothyroid patients before, the aim of this study was to document somatization in people with hypothyroidism and to explore associations with other patient characteristics and outcomes. Methods: Online, multinational cross-sectional survey of individuals with self-reported, treated hypothyroidism, which included the validated Patient Health Questionnaire-15 (PHQ-15) for assessment of somatization. Chi-squared tests with the Bonferroni correction were used to explore outcomes for respondents with a PHQ-15 score ≥10 (probable somatic symptom disorder [pSSD]) versus a PHQ-15 score <10 (absence of SSD). Results: A total of 3915 responses were received, 3516 of which contained the valid PHQ-15 data (89.8%). The median score was 11.3 (range 0-30 [confidence interval 10.9-11.3]). The prevalence of pSSD was 58.6%. Associations were found between pSSD and young age (p < 0.001), women (p < 0.001), not working (p < 0.001), having below average household income (p < 0.001), being treated with levothyroxine (LT4) (rather than combination of LT4 and L-triiodothyronine [LT3], LT3 alone, or desiccated thyroid extract) (p < 0.001), expression of the view that the thyroid medication taken did not control the symptoms of hypothyroidism well (p < 0.001), and with number of comorbidities (p < 0.001). pSSD was associated with respondent attribution of most PHQ-15 symptoms to the hypothyroidism or its treatment (p < 0.001), dissatisfaction with care and treatment of hypothyroidism (p < 0.001), a negative impact of hypothyroidism on daily living (p < 0.001), and with anxiety and low mood/depression (p < 0.001). Conclusions: This study demonstrates a high prevalence of pSSD among people with hypothyroidism and associations between pSSD and negative patient outcomes, including a tendency to attribute persistent symptoms to hypothyroidism or its treatment. SSD may be an important determinant of dissatisfaction with treatment and care among some hypothyroid patients.
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diogenes
Remembering
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Very civil, tried to be friendly and engage. Not even an acknowledgement.
(Of course I recognise that he is under no duty to reply and has lots else to do. Even the published email address might not actually result in his receiving my email.)
( note it's not Thyroid Trust who did the survey, that post title is incorrect )
Lots more details in this post about the original survey / who wrote it/ who promoted it / the first paper analysing it's results /letters to authors etc , and the (despicable) follow up study in Diogenes post above (which is based on the first paper and the survey results) : healthunlocked.com/thyroidu...
Have any of the people studied actually been properly psychologically assessed? When I was still ill and gong downhill fast on combination therapy my, then, endo sent me to see someone ‘to try something different’ basically insinuating somatic disorder. It cost me to go, as this was private at the time, but it was the best money I spent. It was deemed that my issue was medical not mental. Dr’s have disgruntedly had to acknowledge this along the way.
13 years and counting using T3 successfully.
I have often thought it disgusting that the same Drs that refuse to issue T3 for hypothyroidism, without specialist instigation, are often happy to hand out antidepressants with nothing but a tick sheet of answers to generic questions, if that. No specialist input!
Is this now the current plan, to flood the medical journals with ‘studies’ ignoring the modern revelations, ignoring patient symptoms in favour of arse covering blood testing, designed to result in outcomes promoting somatic disorder, to bury the modern revelation documentation?
I actually saw a Psychologist when I had a persistent pain in my stomach. She found in my favour and further examination found a ligament had torn - I had been walking around with this for 2 years previously. This was a NHS Psychologist, who was a lovely older Lady.
If they had looked further into the Thyroid side of things, they would have found I had been given a sub-total thyroidectomy (9/10ths removed) and had been left untreated. Not being treated with Levothyroxine then went on for 19 years.
Just awful!!! It is harm....pure harm! This head in sand and dogma of T4 mono is a danger to patients. How are they getting away with it? A friend had a pituitary adenoma in the 70’s that she only found out about in recent years. I had 10 years trying to get a diagnosis despite gaiters and other symptoms, another 20 failing on T4. I only had a cortisol test done before insisting seeing a specialist. Was normal...only it wasn’t It was borderline low, but hey they don’t recognise anything between Addisons and Cushings!
Then they sent me to a haematologist, who tried to say I was a couch potato. This when working full time on my feet all day, two small kids, hubby and house and garden to look after! It is the assumptions that drive me mad. They judge us before knowing anything about us. Time and money wasting.
How I agree with you UrsaP . Do hope they are not the ones wanting more money. They are certainly not worth it, but we are worthy of better Endocrinologists than we are getting lately.
A major flaw is that the PHQ-15 questionnaire has many questions that coincide with the symptoms of hypothyroidism. I'm not against such studies but they need to use better science. We have discussed this before healthunlocked.com/thyroidu... .
Soon as I saw the word somataform disorder I scrolled down to see who had taken part in writing the paper and sure as eggs is eggs there is our ‘friend’ Tony Weetman.
”Unexplained persistent symptoms can be a sign of somatization.”
Hmm - can also be a sign that the patient is not being taken seriously - is thought by their doctor to be ‘hysterical’ - is some sort of irritating hypochondriac - is menopausal - needs to go on a diet and get a bit of exercise or more likely is feeling really ill and has been inadequately treated and fobbed off.
an insane fantasist if there ever was one & mysogynistic to the very core if he actually has one. I imagine him to be akin to an onion layer up on layer to peel back but no actual centre of any kind and enough to make you cry into the bargain!
Yes, mysogynist indeed not a lot of empathy there and its unfortunate that somehow or another he is in the position of power and even worse influence that he is in.
I know I’m new here but I have had 10 years of struggle with PA which has very similar issues where diagnosis and management are based on very badly flawed blood tests. My most recent struggles include being threatened to have more than 7 years of treatment with B12 by injection stopped because a now perceived ‘false positive’ (highly dangerous idea and stopping treatment will not stop disease progression or a ‘poor outcome’).
Your post reminds me of what I’ve been thinking today. I guess cynicism has crept in for me as I wondered if underlaying all this is a fiddling around with the definition of disease in order to make the threshold for treatment harder to reach without severe disability. Particularly when *everything* is blood test based they can play around with definitions. It’s striking when you ask about the idea of diagnosis by blood tests when they can be highly flawed that there is stunned silence and then a presumption that you require a somatic diagnostic or some variation of conversion disorder label and moved into mental health.
Like others say antidepressents are handed out freely and mental health has no way to say if you are or are not really physically or mentally suffering because they are so overworked. I notice the increasing numbers of people who are in the news having been misdiagnosed and suffering badly before being found to have a medical issue while under the mental health services. And since mental health is overflowing (and some patients who are really desperate and need the services to have time for them) and is way over capacity you would have thought that medical patients would be treated correctly not only to both prevent poor physical health and but also put less strain on mental health services. So all in all I wonder about what is actually going on. Are doctors being deliberately lazy, are hospitals forcing smaller list sizes and therefore shorter waiting lists, is big pharma swaying opinions away from the physical symptoms and physical changes present which hardly ever get looked at in preference to blood tests, is blood testing clinics open about limits of their tests and results?
I can say for sure though because I have seen this with my own eyes: consultants and doctors do not write everything down and then a manager will come along with no health training at all and proceed to undertake ‘spin’ techniques to argue that healthcare is not needed. Forced to go along with that view it’s not until disability, or further emergencies or near loss of life can prove that ‘spin doctoring’ wrong.
I feel very caught in the middle by disease and the NHS. First with PA and now with possible thyroid-parathyroid disease or neuro issue or growths or whatever is up for me. Not believed at all, in constant pain I am really shocked in hindsight how appalling the doubting of medics is….to the point where I feel I am being bullied into accepting whatever is said. There are plenty of signs in hospital to say abuse is not tolerated by staff and I want to scrawl all over them ‘same for patients’.
Lastly I honestly believe that any toxic cultures in hospital doesn’t miraculously get confined to just staff….if they can be harmful to each other as members of the caring community then when push comes to shove they will be like that with patients.
Wow... I could have written that! Totally agree, exactly the sort of way my mind has been going. I’m starting to think that women over the age of 40 are being totally gaslighted. I’ve been fighting for years to be checked for connective tissue, (CT)ie lupus/sjogrens. All the symptoms. In 2020 some bloods started indicating in that direction. Covid hit = delays. Those bloods still showed when further bloods taken 6 months late. When out of ‘flare'.
Was quickly dismissed from Rheumy, though I questioned ongoing symptoms and was referred to eye and dental hospitals. Eye Hospital diagnosed connective tissue in eyes, they were adamant it could not be anything else. Referred me back to rheumy, who ignored referral, even after I chased it another 6 months later. Dental ignored referral until I chased it. I know I ticked boxes in that 1st appointment there, as my mouth was at it’s worst for during the day. Long story short, denied any swelling of glands, this is intermitted directly under jaw, didn’t see anything on the day. Tried hard to dismiss me with ‘Sicca syndrome’ which funny enough is massively on the increase? HMMMM! They tried to deter me from having a biopsy. (thought the resulting report says the head consultant ‘recommended’ it!) I asked if I could think about having it done, realising if I didn’t have it done then, it would likely never be looked into again. I had the biopsy. The incision was increased considerably to find glands, comments were made regarding the size, if the glands found would be big enough.
When I asked again for copies of my bloods a nurse was sent to get them. She returned and put one sheet behind her back, giving me the other two. It was only on the way home (a 60 mile drive) that I realised the ANA etc blood result not there. I emailed asking for them. They arrived in a different lab format, and a comment from the lab at the end indicated that this was not normal procedure to report in this way. So I couldn’t understand the result perhaps?
I then had a phone call from a different Dr telling me that the biopsy was clear. When asked he had no knowledge of the issues with the biopsy itself. Nothing reported! He did mention there was some unspecific inflammation. When I asked how I find out what that is he went back to talk to the head guy who just dismissed me.
Having no re- referral response from the rheumatology dept the eye hospital referred me to another hospital. This appointment was an insult, start to finish. Smiling all the way through, this Dr spent 20 mins checking my details, he kept going on about me having been there 4 years before, being diagnosed with OA. (I had to write to consultant that time, 4 times to have misinformation corrected on the resulting report! Comments about my mother’s history, which I knew nothing about, so wouldn’t have mentioned ) When I mentioned the CT which I was there about, he dismissed it outright. He said just because I had Sicca did not mean I had Sjogrens, He went on to tell me how wonderful his wife was when she took her thyroid meds but when she didn’t how she wasn't.... disgraceful! When I got up to leave he said he could see I was angry. I wasn’t and told him so. I told him I was just disappointed at the lack of knowledge about CT, and being unable to get the help. He was just awful. His report was equally inaccurate. apparently he told me about the side effects of particular medication. It was never mentioned. To name just one point.
My GP sent me to a local rheumy. I took a friend, now refusing appointments unless I have someone attending. I had refused to allow my notes to be passed on. This Dr seemed more open and aware. said he would refer me to a joint rheumy and dermatology clinic. This was Dec, nothing yet. Following this I gave permission for my records from the eye and dental hospitals to be accessed. He was going to look through, stating that previous blood results needed to be viewed with a view to the comorbidity of hypothyroidism. And would consider a trial of hydroxychloroquine.
I was back in clinic in May, again with a friend. I saw a different Dr, who was ready to dismiss me as only one reading on a weak pos ANA and speckled pattern IgG seen. I had several other results with me, which should have been on record had the previous notes been received. Also pointed out issues with my ring and little fingers locking and stiffening. My friend mentioned Dupyuterns, the Dr agreed. He went and spoke to the previous dr and they sent me for more bloods. Autoimmune subsets they say are clear. They have not given me all the results even though I asked for them. I will be chasing. And basically they are dismissing me again. I’m starting to think there is likely something on my notes!
I have been wondering for a while if there isn’t a push to save money by not diagnosing anything that is ‘difficult’ to diagnose. And possibly conditions that largely affect women, conditions deemed to affect women over a certain age maybe? Don’t diagnose, don’t have to monitor or treat? Get’s waiting list numbers down too. Are women over a certain age easy targets?
Sorry didn’t mean to hijack the post, but all this dismissing us all for these conditions will only add to the impression that we are all hypochondriacs, somatic! I know something flares with me intermittently and knocks my thyroid medication of kilter. I don’t believe it is my thyroid causing it but that is what the latest rheumy is implying.
Any connective tissue disorder is being ignored/dismissed. When it was clearly evident in my eyes? My eyes are in my head, does that meant the CT is in my head? Was the head of the eye dept wrong about CT in my eyes? More to the point, what are the long term consequences of having an unidentified CT problem which is ignored?
Your situation sounds like others I’ve heard about, AND I am sorry to hear what you have gone through. Pillar to post comes to mind unless or until you finally find a consultant that knows and is willing to treat. I don’t think anyone in government should be wondering why people are unable to work…..ask a woman at random in a waiting room and I bet she would say something similar to you. Economically impact is very heavy both personally and publicly to both the NHS and lost tax revenue. Half jokingly…..we don’t need need the realm to be defended from outside forces since all in all healthcare is doing a pretty good job of disabling the country literally from within.
Did they ever once contemplate the fact that the high levels of pSSD might be down to the treatment for hypothyroidism generally being crap? Instead of putting the continued symptoms down to SSD did it not occur to them to perhaps try to find reasons for those continuing symptoms? Or would that have boiled their collective brains?
Just the mere mention of Weetman’s name in that list dooms this piece of fiction to the bin as far as I’m concerned. As far as I can recall, this PHQ-15 survey was based very much on yes/no answers with no opportunity for elaboration and played right into this individual’s hands.
Upshot is, if we still dare continue to complain about symptoms after being declared “euthyroid” by the TSH markers, then we’re all crazy now!🤪
We all hope that will change in time, but I’m not holding my breath for that to happen in my lifetime…
Regarding Weetman ,The US Endo Society has John Newell- Price as President elect - I presume that being at Sheffield for many years he has learnt the Weetman ethos on Thyroid disease. Has anyone ever had a consultation with him, does he know anything about thyroid issues ?
If, as I suspect, that there is going to be a prolific influx of ‘new’ studies, reports, analysis...whatever of published reports like this, (question who is peer reviewing them, allowing them to be published?) To push the dismissal of hypothyroid people who fails to thrive on T4, as somatic and even more ignorable, isn’t it time this ‘battle’ was taken elsewhere? But where? It seems that the cause of improving the lot of the hypothyroid person is not being aided by discussion on forums, FB and such. These are too easy to ignore. It has to go more public. Where are all the journalists gone?
Surely the story here is why there is an endless battle in the 1st place. When the prescribed medicine consultation came out, a few years ago I recall contacting a BBC health journalist to ask him. do a story. He replied he no longer wrote about the subject because he got too much grief from both ends of the spectrum. I was gobsmacked! What sort of a journalist runs from a story? The Spectrum is the story...where and when did it arise? Why? Why has it not been addressed and sorted? The fact that so much controversy and indecision surrounds the use of T3 for hypoT should suggest there is some level of need.
Why are the people who are supposed to care about us and presumably actively chose to go into the specialism of endocrinology, so utterly blinded to our plight? Why their minds are so closed to the one pill suits all mantra? The very number of us out here, using T3 to get well, whether independently, privately or on NHS, surely proves a need? I always believed that T3 was price hiked as an excuse to eradicate it. I always thought that was the red herring. The Price. Especially when Graham Jackson and Julie Woods at the F2F’s were pushing ‘us’ to address that issue....surely that was their job, their failing? IMO ‘benefit’ was the aspect we should have all been addressing. They started systematically withdrawing T3 c2015, two years before the consultation. So by the time the consultation came out, they had too few people being prescribed T3 to evidence the benefit. All very clever, very manipulative. So lack of evidence of benefit + extortionate pricing = justification for non prescribing. Did they push so many T3 users into private and independent so the numbers could be ignored? Not on NHS = don’t count = v few?
When they failed to push T3 off the formulary, thanks to the backlash, they had to try something else. Mental health is such a big focus now. How better than have us all diagnosed as somatic.
Nothing is going to change unless this whole issue is out into the wider public and the stereo typical view of hypoT people is dealt with. The BBC aired a program White Gold 2017-19. I saw part of one episode, I couldn’t watch it. Coincidently or not this was aired around the time of the consultation. One character had married his childhood sweetheart, a small petite beautiful blonde girl, who had since developed hypoT and was now depicted and this obese, food shovelling, nasty, screechy banshee of a woman. Throughout they referred to her as ‘Thyroid’. It was disgusting. What other lifelong condition would be allowed to be depicted in this way? I emailed the BBC to complain, heard nothing back.
In addition to all of the above I suspect "they" are terrified to use T3 because it can involve lenghty titration and monitoring, it can be complex....and it takes time and thought.
That is lazy!
Effective use of T3 would need intensive medical teaching which currently. doesn't seem to be in evidence
So, the scaremongering tales are trotted out to explain failure....
These are nonsense, if T3 is used with understanding and respect
On the other hand LT4 can be quickly administered as, "this little white pill taken daily for the rest of your life is all you need to make you well again".
( Those fateful words haunted me for years!)
If it doesn't work ( because "we" believe it does) then the patient must be suffering from something else....most likely a mental health issue.
A handy hook to hang the problem on...
No thought about what might be causing the problem....it must exist because we believe it does.
Just opinion....not fact.
As someone who needs high dose T3-only to function I've travelled that road....solo!
They are lost because lab tests are irrelevant and there are no readily available boxes to tick.
Yet, by clinical evaluation, they worked out how to deal with this over a hundred years ago.
I don't have an answer but what I do know is that fighting against the clout of money and authority ( and those exist) is like whistling into a howling gale.
They are in a position to turn a deaf ear and remain unchallenged...
'A handy hook to hang the problem on...’ and/or a handy hook to hide their lack of interest, care, and knowledge, and their incompetence on? I do wonder if this isn’t a case of mentor -prodigy - prodigy becomes mentor - new prodigy ...reoccurring meaning that the same outdated closed learning and understanding is just being repeatedly instilled into new trainees... maintaining status quo, maintaining the status of the previous mentors?
obviously the Doc who diagnosed me ADHD few years ago must have read this, the letter sent to my Gp with diagnosis, also said "mod/severe depression , anxiety and somatic syndrome, as currently euthyroid". Never realised at time as had my head up the terminal end of my alimentary canal. No wonder my GP refuses to listen to me, they took my thyroid, and left me for years with inadequate treatment regime and refuse to own it. Scary
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