This newly published paper will go down like the proverbial lead balloon with members here.
I had thought (hoped) that Weetman had retired but he is still around.
You can bet that the last line of the conclusion: “SSD may be an important determinant of dissatisfaction with treatment and care among some hypothyroid patients.” will be interpreted as applying to ALL patients, not just some, and with no level of uncertainty (as implied by “may”) allowed.
That conclusion even flips from pSSD (probable somatic symptom disorder) to SSD (somatic symptom disorder). That is, definitive and (one would hope) proved somatic symptom disorder.
For goodness sake, that many of us find one make of levothyroxine better (or worse) than others, without clear evidence of cause, really doesn’t mean it is somatic!
Seems if you are young, a woman, not in work, below average income and on levothyroxine monotherapy you are more likely to suffer a somatic symptom disorder.
Sorry, but I am stuttering with overt ANGER as I try to write this.
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
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.
As so often, the full paper is behind a paywall. So we patients can’t even find out what the endocrinologists are saying about us. Which is, in my view, utterly corrupt, immoral and unethical. Most obviously because the paper has only been produced due to voluntary cooperation by individual patients.
seveneleven Please could you also look for this one ( the original study of the E-MPATHY survey results): pubmed.ncbi.nlm.nih.gov/359... "The Impact of Hypothyroidism on Satisfaction with Care and Treatment and Everyday Living: Results from E-Mode Patient Self-Assessment of Thyroid Therapy, a Cross-Sectional, International Online Patient Survey"
Petros Perros 1 Laszlo Hegedüs , Endre Vezekenyi Nagy , Enrico Papini , Harriet Alexandra Hay , Juan Abad-Madroñero , Amy Johanna Tallett , Megan Bilas , Peter Lakwijk , Alan J Poots
No joy - university doesn't subscribe to that journal it seems. I've requested it on ResearchGate though, so will see. It is always worth checking ResearchGate, which is sort of like Facebook for researchers. Often an entry will come up, because authors tend to add all their citations and abstracts on to their profile. There is generally an option to then request the full text from them, and they can send it to you individually. You just need to make an account (free to do). Because the publisher/journal owns the copyright, the authors can't just add the paper to their page for people to access openly, but it can sometimes be shared with individuals privately who ask for it.
It's worth knowing that when an article is behind a paywall, the beef is with the journals/publishers themselves rather than the authors. Authors/universities will almost always try to publish open access (freely available) because it raises the profile of the research and institutions, but the journals/publishers set the extortionate publishing costs (>£2,000 for an article). So if a university doesn't have an open access agreement with a publisher, authors often don't have a choice. It's a broken system, and academics have been complaining and trying to change it for a long time!
But what really, really annoys is when the journal publishers demand $51 (or some similarly ludicrous amount) to access a fragment - often a very brief comment/letter - which was published with the main paper more than a century ago! And (of course) you have zero idea whether it holds any interest whatsoever.
(Copyright will also have expired though there are so many claims that digitising is a process which renews copyright...)
Occasionally I've found things here:
Internet Archive Scholar
Search Millions of Research Papers
This fulltext search index includes over 25 million research articles and other scholarly documents preserved in the Internet Archive. The collection spans from digitized copies of eighteenth century journals through the latest Open Access conference proceedings and pre-prints crawled from the World Wide Web.
Right so I did ask the corresponding author for a copy (Lakwijk), and he said they can't because of the publishing rules. Whether that's actually true or the journal just has very tight rules, don't know. The reply is a bit irritating to me, as a researcher who advocates for patient involvement in research...the famous argument that the 'primary' audience of research would of course only be 'professional peers'. Never mind the fact that I fall into that category and yet can't access it...
"Unfortunately many journals do not offer free access, unless we pay an extraordinary amount of money. We have chosen a journal with high standards for quality publications and the professional peers (to whom the paper is primarily addressed) will be able to access it through their academic institutions."
The extraordinary payment required by journals is too much for them to pay. But it’s fine for the rest of us to have to make extraordinary payments such as $51 for just a few hours of access? (I’ve seen something like 2,000 pounds or dollars being the sort of amount required. Which represents just about forty viewings.)
The authors have the option to apply for funding for Open Access publishing. (I’d argue that failing to do so is an indication of incompetence.) The rest of us have no such possibility of getting our access funded.
It doesn’t matter whether we, patients, are primary, secondary, tertiary, or goodness knows what order of addressees, unless they formally state we are not allowed to access it, we do represent a group of interested parties.
I am very tempted to consider a campaign which suggests:
• Denial of patient access is an important factor in selection of subjects. Some, such as several members here, could in future refuse co-operation unless Open Access is guaranteed. That undermines any attempt to portray papers as unbiased. There will be an inherent selection bias.
• Put out a suggestion that offended patients, if invited to take part in a survey which will not be Open Access, might at some point say that their answers were intentionally incorrect. Purely because patients have few tools available to fight against this.
• Consider that it doesn’t need anyone to actually lie or answer incorrectly. It simply requires a cloud of doubt to exist.
• Demand that all patient surveys state whether they will be published under Open Access or not so patients can use that factor to decide whether to take part. This should be a universal basic requirement.
• Approaches ethics bodies and patient organisation to raise these issues.
There are many case reports where doctors have asked a patient whether their individual case can be written up and published. The same arguments apply.
Yes - I can see what is wrong with some of this rant. But I want to do something.
Absolutely agree with you. I think there's a divide where some of the more 'old school' medics are keen to maintain the division, while newer academics and those in other disciplines are pushing for change and for a much more inclusive approach.
Just proving the point, one of the other authors (Hegedüs) has picked up the request and just said thank you for your interest, here's the article. Which is what usually happens. So, obviously I can't post it publicly here, but if you would like a copy tattybogle helvella , you can request it from here or PM me: researchgate.net/publicatio...
I have decided what to do. I shall prepare a document which raises the issues of participants being denied access. And raise it as an issue of morals and ethics with as many ethics committees, patient bodies, etc., as seems sensible.
Document part written. And I usually get fired up, write, then allow it to ferment for a while before acting.
Good idea. The more noise that's made the better, frankly. Publishers need to be pushed as well because they're making ridiculous profits - being exclusive is their entire business model.
'SSD may be an important determinant of dissatisfaction with treatment and care among some hypothyroid patients.'
Maybe I'm not thinking clearly (I am feeling a bit brain fogged today!), but does this not ultimately suggest that these patients wouldn't exhibit symptoms of SSD if they were given the thyroid hormone treatment that is appropriate for them as individuals?
After all, thyroid hormone has a huge role to play in brain function / mental status etc.
Which is why access to the full paper is critical to even making our way through the abstract!
I struggled to fully understand the abstract - and failed at several points.
From where I got to in understanding, I agree with you.
At this moment I am emailing the lead author regarding the ethics of paywalls when the primary source of a paper is provided, gratis, by patients. An issue which has been taxing my sense of justice for years - and finally this seems an excellent example of a paper which absolutely should not be behind a paywall.
I've received the paper and sent it on to Lyn Mynott. You might like Rudolf's comment on it:
I think there are true complaints. Whether or not they are unspecific as this paper claims cannot be answered by the survey, the way it was conducted.There is no control group, and according to our own careful analysis most patients were quite able to correctly sense the direction of their FT3 and a tendency towards hypo when under-treated.The complaints were not associated with a pattern of random fluctuations around a given value, but clearly directional, whereas unspecific complaints should be non-directional and unrelated to the thyroid hormone state. Again, it is the blind application of statistics without much thinking that prevailed in this report.
Is a slogan that needs to appear on the wall at the entrance of the “Gaslighting in place of caring” exhibition on current methods of thyroid treatment. Do you think the Wellcome Collection will agree to host it?
Diogenes ,Please could you also ask him to look for this one (the original study of the E-MPATHY survey results): pubmed.ncbi.nlm.nih.gov/359...
"The Impact of Hypothyroidism on Satisfaction with Care and Treatment and Everyday Living: Results from E-Mode Patient Self-Assessment of Thyroid Therapy, a Cross-Sectional, International Online Patient Survey"
Petros Perros , Laszlo Hegedüs , Endre Vezekenyi Nagy , Enrico Papini , Harriet Alexandra Hay , Juan Abad-Madroñero , Amy Johanna Tallett , Megan Bilas , Peter Lakwijk , Alan J Poots
"The results from this survey (run by Thyroid Federation International) have now been published (**note the survey was not organised by 'The Thyroid Trust' as the title of this post suggested)
Article about the findings of the E-mpathy Project (survey) in Thyroid Federation International magazine Sept 2022: thyroid-fed.org/wp-content/... see page 9 The E-MPATHY PROJECT
The Impact of Hypothyroidism on Satisfaction with Care and Treatment and Everyday Living: Results from E-Mode Patient Self-Assessment of Thyroid Therapy, a Cross-Sectional, International Online Patient Survey
Petros Perros 1, Laszlo Hegedüs 2, Endre Vezekenyi Nagy 3, Enrico Papini 4, Harriet Alexandra Hay 5, Juan Abad-Madroñero 5, Amy Johanna Tallett 5, Megan Bilas 5, Peter Lakwijk 6, Alan J Poots 5 pubmed.ncbi.nlm.nih.gov/359... (abstract only)
Comment on the surveys findings written by Antonio C Bianco and Jacqueline Jonklaas in Thyroid Magazine Oct 2022 (only shows the first page) liebertpub.com/doi/10.1089/...
I don't like the tone of their findings anymore than i liked the tone of the Survey, but i personally thought the questions were so poor/ biased the findings were no surprise .
@PeterL said in a reply earlier in this post that :
"The Academic Board consists of four leading international endocrinologists:
Petros Perros - UK, Laszlo Hegedus - Denmark, Enrico Papini - Italy, Endre Nagy - Hungary
and a patient representative: Peter Lakwijk - Sweden"
" The survey was initially made by the academic board to evaluate unmet needs with the use of levothyroxine, but as patients we added questions about the use of combination therapy and NDT. "
(Peter Lakwijk is Treasurer of Thyroid Federation International)
Thyroid Federation International write that they are surprised by the outcome, and I wondered whether their choice of endocrinologists , (and the choice/ format of questions written by those endocrinologists) had influenced the survey outcome .
I think it is possible that it did......and it is disappointing to note that the questions about the use of combination therapy and NDT had to be suggested by the patient representative Peter Lakwijk ... not the endocrinologists themselves.
So i looked the 4 Endocrinologists up (Perros / Hegedus / Papini / Nagi ) :
"What are the biggest challenges faced by your clinical specialty?
We need to reverse the tide of unnecessary investigations and treatments relating to endocrinology, as this has an enormous negative impact on patient care and wastes large amounts of resources. Another challenge is attracting the brightest doctors and scientists to our discipline, and strengthening the links between endocrinology as a clinical specialty and as a scientific area.
Are there any controversies in your practice area?
Some decades ago, we thought that we had solved the problem of thyroid hormone replacement. Yet, some patients remain dissatisfied, seek alternatives, and have recently launched a war against “conventional” endocrinologists. Unfortunately this is exacerbated by self-appointed experts from the dark alleys of alternative medicine, who exploit human suffering and desperation. However, on the bright side of things, this controversy has raised some valid research questions that are answerable by scientific investigation, and the new knowledge gained from it will help resolve some of these issues."
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
A recent article from these 4 Endocrinologists in 2021... (it also includes 'Tony' Weetman as one of the authors , Weetman's views on 'dissatisfied thyroid patients with remaining symptoms' are already well known, usually published under his full name Anthony P Weetman / A.P Weetman)
eprints.whiterose.ac.uk/172... THE ENIGMA OF PERSISTENT SYMPTOMS IN HYPOTHYROID PATIENTS TREATED WITH LEVOTHYROXINE: A NARRATIVE REVIEW
Perros, Petros;Van Der Feltz-Cornelis, Christina; Papini, Enrico ; Nagy, Endre;
WEETMAN, TONY; Dean of the Medical School, Medical School
Hegedüs, Laszlo; Odense University Hospital, Department of
glad you did .( nobody i tagged seems to have noticed my update it yet, so i wasn't even sure they got the alerts but i didn't want to ruin everyone's week by posting again)
I' ve got totally lost in all this - my T3 is starting to fade and my dyslexia starting to play play games with my understanding - but I do not feel the need to read this again tomorrow when fully charged and bright as a button as -
I've just read above - " Some decades ago they thought they had solved the problem of thyroid hormones " -
I'm not aware we had a problem before the guidelines were implemented by the likes of these people and patient's choice of treatment options reduced down to zero.
Isn't it these Professors and the likes, looking for further kudos, that are responsible for the cause and effect of the system they have put in place ?
We have a set of guidelines that are not fit for purpose if patients want to feel as well as they can :
So it's a bit like a mission impossible to comply to guidelines and be optimally medicated.
Were we all allowed to have the treatment options readily available, and take the original treatment option that had been used successfully for over 100 years - it would likely be game over for 80% of the O/P waiting list.
Maybe these Specialist would then have much more time to conduct further surveys as to why patients satisfaction about thyroid hormone treatment options had declined.
I have just seen the pre-publication abstract of this paper:
Hypothyroidism and Somatization: Results from E-Mode Patient Self-Assessment of Thyroid Therapy, a Cross-Sectional, International Online Patient Survey
Petros Perros, Endre Vezekenyi Nagy, Enrico Papini, Christina Maria Van Der Feltz-Cornelis, Anthony Peter Weetman, Harriet Alexandra Hay, Juan Abad-Madroñero, Amy Johanna Tallett, Megan Bilas, Peter Lakwijk, Alan J. Poots, and Laszlo Hegedüs
I note that Mary Ann Liebert, Inc. are charging $51 for access.
The approach of this paper was to ask patients to contribute by responding to the questionnaire.
Is it ethical to request patients respond to a questionnaire (which will have been without any reward) and then preclude them being able to read the research paper which is based on their contributions? (Obviously, I’m assuming that few, if any, will see $51 as affordable.)
Did the questionnaire expressly inform potential contributors that they would have to pay to see the final paper?
If it had, would some have decided not to contribute?
Do issues like this affect the self-selection of contributors?
I now have a personal policy of considering whether eventual publication will be behind a paywall before offering to contribute to anything.
Please do not take this as direct and personal criticism. It is an issue I have been thinking about for years. Your paper simply appeared at a time when I was ready to raise the issues. And happens to be on a subject area about which I am relatively well informed and care deeply. I understand there will have been papers published under similar arrangements probably every single day, if we look across medicine.
I also realise that at the time of collecting the data and writing the paper, you might not have known where it would be published. But you probably would have been aware whether you had funding for Open Access publishing.
I would appreciate your personal opinion, and that of your fellow authors, and the submission of this question to the appropriate ethics committee(s) of your organisations/establishments.
Please note: While receiving a copy from you would be welcome, I’d find it impossible to agree to not making it available to others. Aside from anything else, I’d wish to discuss it in detail with a considerable number of patients and others.
Regards
[ helvella ]
Please do not let my email hold anyone back from making whatever points they might wish directly to the authors. And this is strictly on the issue of ethics.
So.... those 4 endo's were working closely with Weetman around the same time they choose the questions for the survey (E-MPATHY project) . .... they seem to be on first name terms.... in this paper they have called him 'tony' in this March 2021 collaboration ....
"The enigma of persistent symptoms in hypothyroid patients treated with levothyroxine: a narrative review"
PERROS / PAPINI / NAGY /HEGEDUS / WEETMAN Tony ( + Van Der Feltz-Cornelis)
Those 4 endos wrote the questions for the E-MPATHY survey (published Oct 2022)
"The Impact of Hypothyroidism on Satisfaction with Care and Treatment and Everyday Living: Results from E-Mode Patient Self-Assessment of Thyroid Therapy, a Cross-Sectional, International Online Patient Survey (The E-MPATHY project) "
Perros / Hegedüs / Nagy / Papini / Peter Lakwijk (+ Hay / Abad-Madroñero / Tallett / Bilas/ Poots )
Weetman not longer visible at this point ~ presumably they were being careful not to frighten off the 'dissatisfied' patients from filling in their survey)
"This survey explored the impact of hypothyroidism on patient satisfaction, everyday living, experiences with health care professionals, and influence of demographic and socioeconomic factors."
stated Research aims of the original E-mpathy Survey ( taken from information given on the survey ):
"Research aims :The research will seek to explore the following key research questions:
What factors contribute toward satisfaction/dissatisfaction with levothyroxine treatment for adults (aged 18 and over) with hypothyroidism?
What are the perceived treatment barriers and enablers for successful levothyroxine treatment?
What are the unmet treatment needs of those with hypothyroidism treated with levothyroxine?
What associations can be drawn between demographics, comorbidities, personality, and tablet administration behaviours with satisfaction with levothyroxine treatment?"
A Quote from PeterL on previous post
"The survey was initially made by the academic board to evaluate unmet needs with the use of levothyroxine, but as patients we added questions about the use of combination therapy and NDT. "
Then they give their survey data to Weetman who takes out the PHQ-15 (Assessment of Somatisation) data ~ that they had (so conveniently ! ) included in their choice of questions for the E-mpathy survey.
So he can then write a new study using their survey results to asses 'somatisation' (which is NOT in the spirit of what the survey purported to be gathering patients information for) :
"Hypothyroidism and Somatization: Results from E-Mode Patient Self-Assessment of Thyroid Therapy, a Cross-Sectional, International Online Patient Survey"
Perros / Nagy / Papini / Van Der Feltz-Cornelis / Weetman + Hay /Abad-Madroñero/ Tallett / Bilas / Lakwijk / Poots 7/ Hegedüs
"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%)".
I believe the E-mpathy project was probably Weetman's idea all along , and those 4 endo's sang his tune, wrote the questions he needed to get the PHQ-15 data, hid them in a survey pretending to be about the 'effect of hypothyroidism and unmet needs' ... and we fell for it... and now the survey we took part in will be used against us .
If that's not 'unethical' , i dont; know what is.
How many dissatisfied thyroid patients would have filled in a survey with Weetman's name on it plainly saying it was gathering PHQ-15 data to assess somatisation in people with hypothyroidism ?
Of course I can't prove that is what went on .... but i think it , and i'm saying so.
In days past, project and operation names, especially in the military, were chosen to obscure their reality. In themselves, utterly meaningless and avoiding any possibility of causing offence or leaking information.
Juno, Omaha and Gold being locations for D-Day in WWII.
Armilla being the Royal Navy’s Arabian Gulf patrol.
We have also seen some things which ended up with names that meant nothing, or were simple identifiers, but have come to say something from familiarity.
NHANES National Health and Nutrition Examination Survey
Whickham Survey
But, in more recent times, the names have often been chosen expressly to produce an acronym which itself is a word with meaning. A manipulation of expectations. A form of Newspeak.
E-MPATHY study (E-Mode Patient self-Assessment of THYroid therapy) is a classic. A contrived, wholly forced pseudo-acronym chosen expressly to imply something. And absolutely nothing to do with human empathy.
This study seems to link somatic disorder with LT4 monotherapy, but not combination, T3 alone or possibly NDT. Also we need to know the criteria for socalled adequate dosing. If this for T4 only is TSH within the reference range (and the others of course) then this false conditional decision is bound to lead to some patients not liking T4 only and being undertreated. NB FT3 not measured, so that is also missing from the data. I believe that the criteria used for determining adequacy are insufficient, and that the relationship of FT4 and FT3 missed.
I definitely agree with your comment that "utterly corrupt, immoral and unethical - even if I haven't read it yet.
We're well aware of the treatment that Dr Skinner and Dr Peatfield had to undergo as they 'treated their patients due to symptoms' who then recovered their health due to being prescribed the correct amount and the correct replacement., whereas with the 'modern' method many of us are left 'floundering' and trying - with the help of others - to feel much better.
"Somatization is defined as the tendency to experience and to express physical distress and symptoms that cannot be explained by pathological findings, to attribute them to a medical condition, and to seek medical care for them" frontiersin.org/articles/10...
"Detecting Somatoform Disorders in Primary Care With the PHQ-15" Strengths and Limitations For the diagnosis of a somatoform disorder, the complaints are necessarily medically unexplained. Such a diagnosis requires clinical judgment, which a questionnaire cannot provide." ncbi.nlm.nih.gov/pmc/articl...
So surely you cannot legitimately use PHQ-15 to study SSD , (or even pSSD) on patients where there is still a potential medical explanation for their symptoms ... or can you ?
and I'm fairly sure the E-mpathy questionnaire we filled in did not take enough details of our thyroid hormone levels etc to rule out a medical explanation for our symptoms .. or did it ?
i wish i'd a copy of all the questions at the time as i can't now remember it well enough .. and i don't suppose there is way to see the questions again now that the survey is closed.
unless PeterL knows a way to get hold of a copy of the survey questions ?
Peter , can i ask what are your feelings about the data you were involved in gathering being used to asses probable Somatic Symptom Disorders (pSSD) in this way ?
Were you aware that the academic board had included a full set of PHQ-15 questions in the survey for this purpose ?
I'm always deeply sceptical of anything that claims its own validity.
The PHQ-15 is a valid and moderately reliable questionnaire for the detection of patients in a primary care setting at risk for somatoform disorders.
You can't be bothered a middling amount. Only not at all, a little or a lottle.
You can't have severe afib but be unable to feel pounding or racing.
7. Over the last week, how often have you been bothered by feeling your heart pound or race?
An aura migraine isn't a headache!
5. Over the last week, how often have you been bothered by headaches?
If the questionnaire misses something, it is way beyond worse than useless - because it says:
Ideally the PHQ-15 can serves as an continuous measure of somatic symptom (physical) severity and the PHQ-15 score illustrates more clearly the relationship between graded increases in somatic symptom severity and various health outcomes.
If it is missed once, it will be missed/ignored every single time the questionnaire is used. No possibility of the score rising or falling even if the actuality changes markedly.
“Stuttering with overt ANGER”. I thank you on all our behalves. Actually it looks like a shocking piece of work and as you point out, we have no idea what they are saying about us poor stupid patients, attempting voluntarily to help their research. I am amazed that people have happily put their name to this. Can’t help wondering why this really passes as research. Shoddy.
I love you posting these papers, cheers me up no end knowing how little these endocrinologist really know🙄
One of the contributing endocrinologist who wrote this paper, I had the misfortune of having to treat my primary hyperparathyroidism for which he did bloods, then wrote "it appears you may have the condition we discussed over the phone" "that being primary hyperparathyroidism" I will arrange for further bloods in 6 wks".
Which he did.... Leaving out parathyroid hormone 🤦♀️.. Now call me stupid.. But in order to Diagnose primary hyperparathyroidism you need parathyroid hormone in that test.... Don't you?? !!! Then when I pulled him up on this mistake he promptly told me, I would be better off just going back to my gp and getting another blood test done, and did I want to stay in his care or should I just discharge you?.
You can guess what I did.... Discharged myself from him.
When I was referred to him the other endo said he was one of the best leading endocrinologist in the country.
Not the impression I got, then they are able to write papers on these subjects.... Beggers belief 🤦♀️🤦♀️🤦♀️
I don't know what to make of Thyroid Federation International (TFI) involvement in this ?
it's their survey .. and their newsletter states they are " Working for the benefit of those affected by thyroid disorders throughout the world".
Here is their Report on the E-MPATHY project in their Sept 2022 newsletter and it is more enlightening about the results of the survey than the currently available abstracts :
"E-MPATHY (acronym for E-Mode Patient self Assessment of THYroid therapy) is a remarkable achievement that emanated from collaboration between TFI, thyroid experts and Picker Institute Europe.
This month sees the first peer-reviewed publication from E-MPATHY in the prestigious journal of the American Thyroid Association “Thyroid”1. Many of the readers of this newsletter took part in the survey and we are grateful to them for their time and effort.
Why do the survey?
Over the past 20 years several studies have documented that a significant minority of hypothyroid patients experience persistent symptoms, usually attributed to lack of effectiveness of the thyroid medication. This phenomenon continues to be poorly understood. E-MPATHY was constructed in order to gain more insight into the experiences of hypothyroid patients. In particular, we were interested to get as broad a spectrum of responses as possible, preferably from several different countries and diverse cultures.
Who was involved?
TFI, a team of doctors specialising in the thyroid, and Picker (an international charity dedicated to improving people’s experiences of health and social care). IBSA Biochimique SA provided financial support.
How was it organised?
Following a series of meetings, an online questionnaire was constructed with contributions by the thyroid experts, Picker and TFI. It was tested, piloted and translated from English into four languages: French, German, Italian, and Spanish. TFI disseminated the questionnaire to patient organisations using its global networks. The data were collected and analysed using sophisticated statistical methods by the Picker team.
What were the major findings?
We found that satisfaction with care and treatment was not associated with type of treatment for hypothyroidism.
Dissatisfaction correlated strongly with having no confidence and trust in healthcare professionals.
In addition, there were indications of differences in satisfaction rates between countries.
Respondents taking levothyroxine alone, were more likely to report a positive impact on everyday living than those taking liothyronine-containing treatments.
What was the most important finding?
The association between dissatisfaction with care and treatment for hypothyroidism and lack of confidence and trust in healthcare professionals perhaps will not surprise the readers of this newsletter.
Trust is a crucial part of interaction between people. Trust between patient and doctor is the cornerstone of the medical consultation and even plays a major role in how well treatments work2. So, what makes people trust their doctor?
One fundamental determinant of trust is time. That is, the time patients are given to tell their story. Too often patients are not given enough time with their doctor. One reason is that doctors, like many other professionals, need to do so much paperwork and documentation, that it eats into the consultation with the patient. Ironically that paperwork is required because our institutions demand accountability in order to ensure that professionals can be trusted.
What are our reflections on these findings?
The value of E-MPATHY lies primarily in the message it sends to doctors who treat patients with hypothyroidism: there is a need to gain trust.
The British philosopher Onora O’Neill has written extensively about trust3. Her proposition goes like this: it would be silly to expect the public to trust healthcare professionals, because although most can be trusted, some cannot and should not.
Instead we should try and judge if someone is trustworthy based on competence, honesty, and reliability. It is still tough for a patient to judge whether they can trust their doctor. One can make sure that they have the required qualifications and that they are accredited in their specialty. Being members of recognised professional organisations also helps. If they have published in peer reviewed medical journals on a particular area of medicine, that would give an extra point. In some countries it is possible to find out if a doctor has been subjected to restrictions in their practice by regulatory bodies. Finally, in this era of “TripAdvisor” culture, online reviews of doctors may also be available in some countries. None of these are totally reliable. Some untrustworthy individuals will find ways of slipping through the net and conversely trustworthy doctors will be judged unfairly.
Onora O’Neill has an additional interesting piece of advice to those who wish to become more trustworthy: show your own vulnerability.
Doctors can and should share with their patients that existing knowledge is limited, that there are uncertainties and that predictions about outcomes of treatment are far from perfect.
Doctors can also learn from what hypothyroid patient organisations do so well. When a person posts about their troubles and difficulties fellow sufferers immediately shower them with their kind, thoughtful messages and good wishes. In other words empathy. Perhaps the acronym of this study was prophetic of its findings.
What was the most surprising finding?
A great deal has been said in social media, hypothyroid patient sites and in the medical literature about combination treatment (L-T4+L-T3 or desiccated thyroid extract). Patient testimonies seem to favour combination treatment, however several randomised controlled studies have failed to show a difference between L-T4 and combination treatment in quality of life, symptom control, neurocognitive function and psychological well-being4.
We expected E-MPATHY to show that satisfaction with treatment and care of hypothyroidism to cluster around combination treatment and desiccated thyroid extract.
We found no association between type of treatment for hypothyroidism and patient satisfaction.
Furthermore, better outcomes on everyday living were associated with levothyroxine, compared to liothyronine-containing treatments.
This may reflect how respondents were selected and the impact of different cultures on expectations and perceptions, an area that needs to be explored further.
What next?
E-MPATHY is a huge resource and there are still data to be mined and ......."
Shame they weren't more awake when they were picking their academic panel of endos' for this project ... asking 4 who are all known to work so closely with Weetman and who appear to share many of his views was an idiotic choice if the intention was to get balanced/ unbiased data to 'help thyroid patients with unmet needs' ..... a bit like giving the fox the key to the henhouse.
Looks like they are poo pooing T3 therapy in this paper🤷♀️, have they looked at the amount of thyroid patients who performed very badly on T4 therapy?Me being one and I'm pretty sure I'm not alone, i have no thyroid so like many of us who live without this organ, or are hypo due to other thyroid conditions we use these synthetic hormones for life so having the correct drug and amount is key To our recovery, however these endocrinologist /specialists can't seem to get there heads round this.
My interaction with one endocrinologist who contributed to this paper saw me for primary hyperparathyroidism (which I mentioned on a post a few days ago) he stuck his nose into my thyroid condition noting I was on T3 therapy then saying.. "T3 therapy is not good it can have serious affects on your health" "perhaps you should think about coming of it and going back on T4 therapy".
OBVIOUSLY this endo didn't know I was schooled by the great members on here😂 and said.. "why do you think I need to come off my T3 therapy when my T3 is in good range and so is my TSH, my symptoms are connected to primary hyperparathyroidism, not thyroid!!
He then said.." well that is entirely up to you" but I will make a note in my report stating this".. Which he did saying"miss whitehead is insisting she stays on T3, this is at her own risk, but would recommend coming off it for a period" then my gp also blamed my symptoms on the t3 and promptly took me off them and put me back on T4 to see if my symptoms disappeared.. They did not!! And it was 4 months before I could go back on them after seeing an endocrinologist because my thyroid bloods were awful ( yes because I was not responding to the t4🤦♀️) not one endocrinologist I spoke to recognised or wanted to deal with the primary hyperparathyroidism, each dismissing me because I was on T3 therapy, even though my blood work shows a parathyroid problem.
I saw a private para surgeon in Nov last year who performed a ultrasound scan on my neck and identified a nodule , along with blood work he is leaning towards this being an overactive parathyroid gland.
I presented these findings to my gp who as done nothing to refer me to Liverpool for this scan😠 saying its probably a peice of thyroid left over from my thyroidectomy 🤦♀️ didnt know my gp had x ray eyes😂, anyway I'm now no longer with him, saw a lovely gp on Tuesday she is referring me to Liverpool, she is also doing a full blood work up and after she saw the photos of my poo (which my previous gp refused to look at I'm going for the camera down the throat on Tuesday and the camera up the back passage the week after,
Maby these over privileged specialist's (that's my opinion) should get back out in the medical field talk to the people that matter in thyroid conditions, instead of typing up some mumbo jumbo and getting very well paid for it.. Am sure!! 😠😠
Footnote... When I was dealing with this endo, he told me he had hurt his back and was working from home, he also said he was working on a paper.. Wonder if it was this one😂
it's not really interested in whether they use T3 or not .. it's basically saying that having 'Somatic Symptom Disorder' is the probable reason that so many patients who did this survey are not happy with their thyroid treatment , and that if they have SSD their thyroid treatment is not the problem.
( these SSD patients would still be blaming all their random symptoms / and dissatisfactions on their thyroid treatment/ or their thyroid condition , even if it their thyroid treatment was actually perfect )
And that because so many of the 'hypothyroid' patients who filled in the survey scored more that 10 on the PHQ-15 questions (which tests for 'possible somatic symptom disorder') .. they are suggesting that having SSD may account for much of the dissatisfaction found in thyroid treatment ..regardless of whether that treatment is T4 only, or T4+T3 ... and that these patients wouldn't be happy with their thyroid treatment anyway, (no matter what it was, or how effective it was) ~ because they have SSD they'd still carry on moaning about all sorts of random issues and blaming it on their thyroid .
The other paper ( the original survey) also says that distrust of doctors is strongly associated with dissatisfaction with thyroid treatment. and seems to be implying that they think the distrust leads to the dissatisfaction with treatment .
When in reality it's often the other way round ....most of us trusted doctors well enough UNTILL we found from personal experience that their treatment didn't work very well on us ,but they ignored our experience and insisted we were now fine. (and they told us it worked perfectly well for everyone else, which we later found out wasn't true ) .
Doctors ignoring our lived experiences of the treatment (and the lie that 'it's just you' ) , is what has CAUSED the distrust ...
Distrust of doctors is not what is causing the 'dissatisfaction with treatment' for the majority of properly diagnosed thyroid patients .
Allowing specialist to write papers on the subject of thyroid conditions and the treatment should require these specialist to look over all angles.First distrust of a gp.. This is not something we as patients want, as you said tattyboogle, but saying the thyroid medication or thyroid condition is not the problem is wrong, and as we know from hearing peoples storys on here telling us about there experiences with endocrinologists and gps not listening or just dismissing them, and I include myself in this, its not a great way to deal with our ongoing symptoms.
This SSD is a cop out, it's just another way to dismiss symptoms as some other cause, it's what I've been going through since my total thyroidectomy in 2019, every endo I've consulted with has dismissed my ongoing symptoms (firstly not absorbing the T4 effectively) but my gp with the interaction of a endo made me persist with this therapy making me hypo🤦♀️ after a change in T4 meds.. again with no improvement in symptoms.. this went on for another 3 months (sheer hell I honestly thought I was dying) I eventually got on T3 which I must say is not great, but my thyroid hormones are way better especially my T3 which was dire on T4, but as you say no blame was laid against my therapy saying it couldn't be my thyroid medication.
Then the spanner in the works in 2020, over range calcium and parathyroid hormone (primary hyperparathyroidism) now the t3 therapy was to blame for my symptoms, which started in April 2020.
I only made the reference to T3 therapy because one of these endocrinologist who I was consulting with, I got the distinct impression he was against T3 therapy, as I said he recommend I come off it, and this indeed did happen 😠
It appears they are saying when all else fails (no cause can be found.. thyroid medication is showing normal function, thyroid meds are working) it's in the head, or the patient is wanting attention, what they fail to realise is we want to be well again and will do all we can to achieve this, I've been labelled as a nuisance a time waster ect.. Believe me I wouldn't be bothering my gp if I felt well 🤷♀️ and yes I get the reference of thyroid medication working perfectly well for other people, one endo stuffing that fact down my throat 😠 I pipped back.. "But surely we're all different, we will act differently to certain medications you can't umbrella every person as the same" that went down like a lead balloon 🙄
This paper has Petros Perros and Christina Maria van der Feltz-Cornelis as authors among others. They talk about MYNES - medically not yet explained symptoms. Published in June 2022.
Are they trying to separate those of us with symptoms on levothyroxine into a separate group? That those who are satisfied with Levothyroxine are 'proper' hypothyroid patients and the rest of us who need T3 or combi or NDT are 'unexplainable'?
I'm quite as angry as Helvella over this and now more worried there is more going on behind our backs.
It's your final sentence that is now concerning me greatly, having been told this morning that my hypo symptoms are due to social, psychological and emotional factors, not my thyroid treatment. If endos are genuinely believing this, then it seems so hopeless.
At least there are many here who on the same team as you!
Twenty or so years ago, when the internet was far less accessible, had far less on it, it was much more difficult to see a future. The ability of patients to discuss, to exchange experiences, to challenge the medical establishment, was much less than it is now.
(And I very much include the majority of groups and forums which are run with reasonable ethics. I might have put my flag in the ground here, but there are many others around the world.)
I remember a major recall of levothyroxine in the UK around 2012. Many patients realised how much they needed each other as the fallout from that affected a huge proportion.
I believe the study was undertaken in good faith but I feel it has a number of flaws.
1. The participants were recruited from patient support groups such as Thyroid UK. This tends to exclude patients with successful outcomes.
2. The PHQ-15 questionnaire may be validated but it is not suitable for hypothryodism. The reason being that many of the questions relate to symptoms that are symptoms of hypothyroidism. If you want to see if symptoms are caused by somatization you must choose symptoms that do not arise from the underlying illness.
3 Many of the subjects will have hypothyroidism that is in part or whole due to factors other than a failing thyroid gland. For example, type-2 deiodinase problems (D2 - impaired T4 to T3 conversion). Tissues such as the brain and skeletal muscles are dependent upon D2 for local T3 levels. D2 impairment will present with symptoms related to the brain and muscles such as difficulty concentrating and muscle pains.
Checking for somatization is valid but any study needs to use markers that are not symptoms of the underlying disease.
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