BMJ Article on Twitter today: The BMJ Open have... - Thyroid UK

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BMJ Article on Twitter today

DJR1 profile image
DJR1
46 Replies

The BMJ Open have today published a paper entitled, "Attitudes and perceptions of health professionals towards... fb.me/TmCmjjq4

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DJR1
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DJR1 profile image
DJR1

Sorry link above did not work

bmjopen.bmj.com/content/bmj...

Hashihouseman profile image
Hashihouseman

One small study says it all! This has been exactly my experience of all the primary and secondary care professionals..... hubristic, ignorant, biased, rule bound and unwilling to consider patients informed views and experience. Hypothyroidism is very challenging to manage and the health professionals seldom if ever acknowledge this. I wonder if the fact that GP practices get paid a hypothyroid patient premium has anything to do with it, or just their usual lack of time and open mindedness.......

DJR1 profile image
DJR1 in reply to Hashihouseman

My experience too, there was only one response on Twitter. I was infuriated by this article. The elephant in the room again was T3 and proper thyroid profiling to understand that 10-15% of patients have T4-T3 conversion issues or low vitamin and mineral levels which also impair conversion. Interesting the number treating by biochemistry alone as this was my GP approach. He refused to increase T4 above midpoint of the reference range (9-19) and he was happy for TSH to be halfway between (0.4-5). He refused to accept hypothyroid symptoms could present if the pt was anywhere in the reference range. This was a belief held by the whole practice. The article further confirmed my belief that if you suffer from symptoms and get no help treat yourself. My symptoms improved considerably on NDT after ten years of struggling.

Hashihouseman profile image
Hashihouseman in reply to DJR1

There's enough research now for all primary care professionals to know that one persons euthyroid place on the reference ranges for ALL THREE key thyroid blood levels is another persons genuine pathological hypothyroidism. And they should all be aware of and respect not scoff at the significance of holistic wellbeing (selenium, iron, vitamin D etc. etc.) being more than mere adjunctive placebos. Those people suffering ongoing symptoms in the face of doctors intransigence over replacement therapies targeting their individual set points for hormonal homeostasis should seriously consider formal complaints and negligence claims against the doctor. Only we know whether we are well or not. It's a scandal for healthcare professionals to be treating us otherwise. keeping it all on this website is crying to the converted, it needs to be shoved in their faces and their 'text-book' responses challenged as far as possible. I doubt many GP's are regular visitors here .....

SilverAvocado profile image
SilverAvocado in reply to DJR1

Your summary of the GP's approach is really chilling! A TSH over 2, and a freeT4 of 14 forever!

I do find it quite interesting that some GPs are better than others, and I wonder where they get it from. Your GP seemed to be contravening NICE guidelines by ignoring symptoms, which many of them do.

I wonder if many other medicines/blood tests fit in just fine with this pattern and that's why they do it. Or if all patients are doing just as badly :p

humanbean profile image
humanbean in reply to Hashihouseman

The premium for treating hypothyroid patients was removed in 2014, if it is QOF you are thinking of.

I think removing it didn't do us any favours. :(

Hashihouseman profile image
Hashihouseman in reply to humanbean

Hmm, interesting my GP told me last year, with some glee, they get paid extra for Hypo's but it wouldn't cover my costs to them because I was 'complex'

humanbean profile image
humanbean in reply to Hashihouseman

He might not have been up to date on his QOF.

nhsemployers.org/-/media/Em...

Look on page 5 of 14 in the above link. Hypothyroidism QOF indicators are explicitly mentioned as being retired.

TSH110 profile image
TSH110 in reply to Hashihouseman

Hashihouseman I have been called “complex” like that what for being guilty of developing an autoimmune condition along with half my family despite leading an exemplary life style. It is enough to give you a complex being referred to like that! How dare I not be bog standard plain straight forward T4 monotherapy material!! And worse still “expensive” not that I cost them a penny now I am on NDT and do my own doctoring - quite well too better than the professionals in fact... I obviously missed my vocation.

Breena profile image
Breena in reply to TSH110

I may have it wrong but they seem to blame problems on us the patient not adhering to taking or levo as directed by them I think that none of us would do this without a bldy good reason.I am so thankful to have found this forum the advice given makes so much sense (common ) I have not found many doctors to be gifted with it.

crimple profile image
crimple

An interesting study, but only 19 participants. Health professionals felt hypothyroidism was easy to manage, and relied on bloods tests (no doubt TSH only). If TSH level wasn't right then patient must be non compliant with meds!!!!!!!

Symptoms not often taken note of with respect to changing dosage. Information exchange with patients restricted by time, some told them to use internet others were clearly against Dr Google. No GP's had good knowledge about medicine interactions. Pharmacists couldn't help patients cos they didn't have access to their records.

Bloods and continuity of care -same GP each visit- we should be so lucky- were important for this simple to manage illness!

Until 2014 all surgeries had to keep a register of hypothyroid patients, that is no longer required!! So if they don't know how many patients they have then they don't need to increase resources- is my take on that! 11-27% have high TSH and 20-41% have low TSH.

So as far as I am concerned the study does highlight the issues we here are all up against and nothing will be changing any time soon. We just have to be "good girls and be more compliant" Sorry gents not being sexist, just 9 out of 10 of us on here are female, who are usually "menopausal" and its "all in our heads". No offence meant to anyone just having my usual rant!

TSH110 profile image
TSH110 in reply to crimple

crimple yes the false diagnosis of being “menopausal” nearly killed me. I rant in unison and sisterhood!!

in reply to TSH110

Heard that before perimenopause nonsense causes joint pain etc 🤔

TSH110 profile image
TSH110 in reply to

Hidden i think they are inhabiting a parallel universe where hypothyroidism has been given the the wrong name and the wrong hormone treatment, pity it spills right over into the real one we live in.

Hashihouseman profile image
Hashihouseman in reply to crimple

being hypothyroid at 53 is my Manopause thank you very much ;)

TSH110 profile image
TSH110 in reply to Hashihouseman

Hashihouseman ok I rant in unison for both sisterhood and brotherhood not receiving a prompt diagnosis of hypothyrodism for whatever reason

in reply to TSH110

Could it be that (at least in the US) it is not a Big Pharma moneymaker??????? irina1975

TSH110 profile image
TSH110 in reply to

Hidden it does make money for Big Pharma because so many people are taking it. Some say the lower ranges in TSH before treatment commences in the US was Big Pharma led conspiracy, trying to sell more medication.

I can’t understand the attitude here except to conclude it is pure sexism and basically the mantra of a load of saddo men who enjoy having tight control over women to the extent that they accuse them of lying about taking their medication and claim they invent symptoms to be meddlesome and difficult. How else can we explain it? It is so irrational and lacking in any scientific rigour.

in reply to TSH110

Good point. But I also believe that Big Pharmas' plans for generating income is probably one of the few 'equal opportunities for men and women' over here. $$$$$ has no gender!!. Sorry.I will get off my political soapbox!

Rita-D profile image
Rita-D

Thanks for showing us this. Just the usual rubbish. They don't know enough about thyroid issues, so blame the patient!

DeeD123 profile image
DeeD123

I posted it on my fb page a couple of days ago. It really is no surprise considering the treatment I have received over the last 10 years from both sexes of the medical profession 😢

serenfach profile image
serenfach

"Levothyroxine, a synthetic isomer of the thyroid hormone thyroxine, is used to treat hypothyroidism and is dispensed to 99.7% of patients with hypothyroidism in England."

"I think the idea is just to try and get the result sitting somewhere in that [laboratory reference range].(GP-8)"

"Health professionals believed that poor adherence was the main reason patients struggle to lower TSH levels"

The whole article strikes a note of the doctors and health professionals dont know what they are doing and dont treat the patient but just look at the blood results and then dont really know what the blood results are saying! So if your results are "wrong" they blame the patient. Doh!

TSH110 profile image
TSH110

It is rather shocking to read such ill informed and prejudiced judgements, from qualified and practicing professionals, which reveal a blind and incorrect adherence to the belief levothyroxine in any dose that gets TSH in range is good enough, and any opinion of patients, based on experiencing persistent symptoms, that they are still not well is dismissed as lying about actually taking the tablets. What arrogance and poor practice. Are we all incapable of taking a medication correctly if our condition is not properly controlled and symptoms persist? Do these doctors actually read any current research or actually have the ability to question the validity of they have been taught about the wonders of cure all T4 monotherapy. I conclude they must be completely stupid wishing to believe numbers that they do not really understand how to interpret or use to get optimal doses, rather than listen to real people with real problem and act to help them. It is completely unacceptable and it explains a lot.

Seems nothing has moved on in three years since Dr Malcolm Kendrick discussed the patronising way many hypothyroid patients are treated:

google.co.uk/amp/s/drmalcol...

Hillwoman profile image
Hillwoman in reply to TSH110

I keep hoping Dr MK will move on from his long blog series on CVD and finally tackle hypothyroidism, as he once said he would. Recently he made a comment suggesting that he would tackle a different subject instead, but I can't find the relevant blog post.

TSH110 profile image
TSH110 in reply to Hillwoman

Hillwoman that would be great if he did but I fear he would be struck off for voicing simple sense in a compelling manner that goes against the grapple hold of the endocrinologist dinosaurs currently holding back freedom of choice and progress. Roll on the day that lot become extinct. Women are fighting back against being treated like brainless objects maybe one of its last bastions will eventually fall.

Hillwoman profile image
Hillwoman in reply to TSH110

Well, he's managed to dodge the GMC so far, and he did write that really good blog post you linked to. I can't help feeling that if someone had tried to put the frighteners on him, it wouldn't have had much effect. ;-)

My fear really is that he might have decided that thyroid problems are just too boring for an enquiring mind to explore any further - like lots of other doctors. If that's what he has concluded, he would be wrong of course.

Breena profile image
Breena in reply to TSH110

Simple no common sense, I have beenasked have you been taking you meds.

in reply to TSH110

Thanks TSH I just read the google.co article and bookmarked. i don't know anyone who is on anything but good old levothyroxine.

penny profile image
penny

I’ve just skimmed through the article..I’m about to put my head in the oven. (It’s electric, by the way.). It’s just unbelievable that GPs blame the patient for not being well on levothyroxine.

SilverAvocado profile image
SilverAvocado

Only just had a chance to read this. First comment, speaking as a qualitative researcher, this piece of research is dire! It almost reads like a parody of qualitative research written as comedy for engineers to read ;) Then I had a look at the departments the authors come from, and they all seem to be medics of some kind, so who knows what happened in those interviews . The first question I would ask to evaluate a piece of qual research is" Have you found out anything we didn't already know, that surprised you, and isn't part of common sense? " I don't think these people went into the project intending to find out anything they didn't already know!

The thing that shocked me the most in the things the doctors said was the emphasis on patients finding out about their own condition. That doctors felt it was okay to not hand out a leaflet or explain things to a patient, because they'd find out on their own. This is completely contradictory to how the majority of patients feel. And in fact I've read lots of other research with doctors that suggest the patients who find out about their condition independently are extremely rare. I'd like to do a more psycho analytic re-analysis of these interviews and get to grips with why the doctors believe such weird things about their role in patients' lives ;)

Also pretty nasty when the doctor says that they're very busy, and an abnormal result comes across their desk, they just tell themselves the patient probably missed a couple of pills! There's no point in taking any blood tests ever if the abnormal ones are going to be dismissed. It's just an exercise in keeping everyone quiet.

But I do also wonder why this research was done, and then why it was published, as it's not accomplishing much. We, as patients, are shocked by the arrogance and negligence. But the authors don't seem to be. Basically they're just repeating back to us that these doctors largely follow the guidelines, with the teensiest but of detail about how that gets accomplished, and the suffering of patients that probably results.

Hillwoman profile image
Hillwoman in reply to SilverAvocado

How on earth did this paper pass peer review, do you think? I thought the BMJ under its current editor was aiming for higher standards, and also attempting to involve patients more often at the review stage. I really wonder who had sight of this paper before publication.

I signed up to the BMJ's patient review project two or three years ago, but so far I've only been asked to review one paper (I was too ill, sadly). With regard to the paper under discussion, it sounds as if the BMJ could have benefited from your input!

SilverAvocado profile image
SilverAvocado in reply to Hillwoman

My first assumption is that it was written by and reviewed by people that don't know anything about qualitative research. It's actually quite hard to understand what is done for a piece of qualitative analysis, whereas I think quantitative research is more easy to understand, at a basic level. You count two sets of things, and anyone can understand that if one is bigger then the finding is that one is bigger. To analyse interviews you have to have a nuanced idea of what happens in the interview situation, and if what people are doing and are trying to do when they answer an interviewer's questions.

In this paper they just very simplistically say:"A doctor told us such and such in the interview. So our finding is that such and such is the case."

And doctors are not trained in any kind of research anyway. It's mainly a practitioner discipline, like education which I worked in for years. Many of the people doing the research do not have a research training. They may have gone to a 1 hour workshop about it once.

I also think that doctors have a big emotional barrier about researching other doctors behaviour and emotions. When I was doing social psychological research about doctors I was preparing to write a paper arguing that doctors have emotions and beliefs. It actually had to be said! There is tons written about the emotions and beliefs patients have, but they have a really hard time accepting that doctors themselves have emotions or interior life. They are supposed to be these unquestioned, unexamined super hero robot figures! This paper might be considered quite radical because it uses the word 'behaviour' and applies it to doctors!

Hillwoman profile image
Hillwoman in reply to SilverAvocado

I must admit I know very little about qualitative research. How did you get into this field - that is, if you don't mind me asking?

Not encouraging to have confirmed just how little doctors know about research methods, even if it is painfully apparent at times.

Medics really do think of themselves as a breed apart - or a breed above - and I suppose it shouldn't surprise me that they would not perceive a need for reflection on their own behaviour and attitudes. Henry Marsh's stated view of his colleagues (in 'Do No Harm') is that they see patients as a separate race. This was apparent to me even as far back as A-levels. The self-selected 'geniuses' aiming at med school entry were the most obnoxious and/or the least socially skilled element of the sixth form. I still remember with fondness the formidable female head of all three science departments ripping their egotistical expectations to shreds...

SilverAvocado profile image
SilverAvocado in reply to Hillwoman

Hehe, yes, I think that is true of doctors. They look at patients in the same way you might look at a broken photocopier in an office job ;)

I got into qualitative research by studying psychology originally. Psychology is a lot about putting people into little boxes, so at every step I drifted more towards social research, sociology and social psychology. Both sociology and psychology have traditions of doing qualitative research, although it's always a bit marginalised and scoffed about!

There isn't much talk about qualitative reasearch in the mainstream, really. Interviewing people is an amazing experience, though, if you can persuade someone to open up and really tell you about their life experience, you find out so much about why people do what they do. Would love to ask some of those doctors about the strange beliefs they have that excuse them from having responsibility to tell their patients about their illnesses!

I'm a bit out of the loop now, so can't think of a good book or article to link you to. But some keywords to look up if you like, one of my favourite methods is Discourse Analysis, and a theory I used a bit that I know has a good Wikipedia page, Actor Network Theory. My field was called Critical Psychology, but it's a movement that was kind of falling apart just as I qualified in it!

TSH110 profile image
TSH110 in reply to SilverAvocado

SilverAvocado at least when I looked at the broken office photocopier I could actually fix it, or failing that get a competent person in to sort it out! Using that analogy Doctors would just ignore it and hoped it went away. Sounds familiar....

SilverAvocado profile image
SilverAvocado in reply to TSH110

Hehe, yes that's true :) I was just thinking of the attitude of total nuisance!

Oh no, more work for me, and this isn't even the work I came here to do!

Hillwoman profile image
Hillwoman in reply to SilverAvocado

I find it so interesting that you drifted away from mainstream psychology because of the tendency of that discipline to compartmentalise people. I've always felt this to be one of the more significant problems with medical practice. Mind you, it crops up in other disciplines too. A long time ago, when I started a post grad diploma, I had to learn about concepts like Labelling and Deviance Theory as part of the Social Policy element of my course, with the intent that I should apply it to my dealings with the public in my work. My first degree straddled other disciplines, so this was new to me. I was already ill and struggling with the medical profession, so I could see immediately the potential application of this theory to their interactions with patients.

Thanks for the Wikipedia suggestions. I've got the pages open and will read with them with great interest tomorrow morning. :-)

SilverAvocado profile image
SilverAvocado in reply to Hillwoman

Thanks for taking the interest to look into them. I'll have to try and look myself tomorrow and make sure I haven't sent you on too wild a goose chase ;)

I think that a lot of these disciplines leak into each other, too, without really realising it. Both psychology and medicine buy into the biomedical model, and see a human being as just a body, and then a body is just a fleshy machine, with a few learned behaviors in it. And then the thing they are most interested in is how to simplify the whole picture so they can work out how to control it.

I'm more interested in the idea that the whole thing is infinitely complicated, with a rich complex psychology, all of our history, every interaction with others, everything around us full of meaning, and all out actions creating more and more meanings.

Hillwoman profile image
Hillwoman in reply to SilverAvocado

I'm not having a good day today, so I've only just started to look into the subjects you flagged up, but it all looks very interesting. It would seem that qualitative research is ideally suited to studies with a small sample size, like the one in the BMJ.

The mechanistic approach you describe being used in medicine and psychology is something I've always found frustratingly and quite insultingly reductive. I remember a phrase I read once, I think written by Dorothy Rowe, to the effect that we are "meaning-creating creatures". This seems fundamental to understanding anything about the way human beings work, whether it's our physiology, or society, or whatever, really.

Anyway...those are my initial, very sketchy thoughts. I'll read more when I'm feeling a bit better. Thanks for pointing me in the right direction. :-)

SilverAvocado profile image
SilverAvocado in reply to Hillwoman

Yes, that's all right :) You need small sample sizes because a lot of time will be spend on each one.

The emphasis is on getting a deep understanding of the thing you're studying, rather than to demonstrate that that thing is representative of the whole of the population. It's more about proving that a certain, well understood thing, definitely does occur. Rather than proving that a poorly understood thing happens throughout the population.

The problems with the second approach you can see in a lot of thyroid treatment research. They demonstrate how a certain thing is distributed in the population, but because the population and the research question are badly formed, they haven't found anything useful.

Quantitative research is extremely dependent on having the right research question. Because it isn't capable of finding out anything outside the scope of that question.

They aren't really set against each other, it's good to be able to do both. But I do despair when I see useless research questions! Especially in psychology, which is what I originally studied.

Hillwoman profile image
Hillwoman in reply to SilverAvocado

This is really illuminating. Thank you. :-)

in reply to SilverAvocado

It's a tight 'good ol' boys' club! irina1975

humanbean profile image
humanbean

Just wanted to point out that there has been another thread on this same paper :

healthunlocked.com/thyroidu...

.

One nuance I got from this paper that I hadn't twigged before is that doctors think they have to prescribe, say, 50mcg Levo, and if the patient's TSH doesn't drop to within the reference range then the patient must be non-compliant. No acceptance whatsoever that the doctor may need to increase dose, the attitude being that if 50mcg worked for one patient then it must work for them all.

SilverAvocado profile image
SilverAvocado in reply to humanbean

Yea, I noticed that, too. Non-conpliance was a really big focus, and one of the first explanations the GPs looked to if results weren't as expected.

I'd be really interested to find out how widespread 'non-compliance' is, and what the explanations for it are.

Also really depressing that the possibility of weight gain was thought to be the thing that kept patient's compliant. So the GPs don't have anything in their imagination about other kinds of suffering!

humanbean profile image
humanbean in reply to SilverAvocado

I hadn't noticed the last paragraph. I'll have to read it (the paper) again. :)

Zephyrbear profile image
Zephyrbear

'GPs and pharmacists generally perceived that patient knowledge of thyroid function was basic. Pharmacists mostly felt that patients were unaware of the risk of under-

treatment or overtreatment with levothyroxine:

I don’t think many of them can really tell you what it’s for, what the thyroid does or what the risks are of going too high or too low. (P-1)'

All I can say to these patronising prats is that your average thyroid patient is probably more aware than you so-called 'professionals' about our conditions and the best ways to treat them and it's nothing to do with blood tests!!! Their arrogance is only surpassed by their own ignorance! 😡😡😡

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