Background Suboptimal thyroid hormone replacement is common in patients with hypothyroidism and the behavioural factors underlying this are poorly understood.
Aim To explore the attitudes and perceptions of patients to thyroid hormone replacement therapy.
Design & setting An in-depth qualitative interview study with patients with hypothyroidism residing in Northumberland, and Tyne and Wear, UK.
Method Twenty-seven patients participated, of which 15 patients had thyroid stimulating hormone (TSH) levels within the reference range (0.4–4.0 mU/L) and 12 patients had TSH levels outside the reference range. A grounded theory approach was used to explore and develop emerging themes, which were mapped to the health belief model (HBM).
Results Patients generally had a low understanding of their condition or of the consequences of suboptimal thyroid hormone replacement. Patients that had experienced hypothyroid symptoms at initial diagnosis had a better perception of disease susceptibility, and this was reflected in excellent adherence to levothyroxine in this group of patients. The main benefits of optimal thyroid replacement were improved wellbeing and performance. However, patients who remained unwell despite a normal serum TSH level felt that their normal result presented a barrier to further evaluation of their symptoms by their GP.
Conclusion Educating patients with hypothyroidism regarding the consequences of inadequate thyroid hormone replacement may reduce barriers and improve treatment outcomes. An over-reliance on TSH as a sole marker of wellbeing reduced opportunities for clinicians to address patient symptoms. Evaluating symptoms in combination with biochemical indices, may lead to better patient outcomes than relying on laboratory tests alone.
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holyshedballs
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However, patients who remained unwell despite a normal serum TSH level felt that their normal result presented a barrier to further evaluation of their symptoms by their GP.
Now where did I read of patients feeling dismissed because their TSH is in range? Hundreds (or thousands?) of times.
What! "Conclusion Educating patients with hypothyroidism regarding the consequences of inadequate thyroid hormone replacement may reduce barriers and improve treatment outcomes".
I think a mistake has been made in that it should read
"Educating doctors/endocrinologists re hypothyroidism regarding the consequences of inadequate thyroid hormone replacement may reduce barriers and improve treatment outcomes
That paper is appalling. It seems to be doing nothing but patient blaming.
Patients who have persistent symptoms despite a TSH concentration within the reference range should be carefully evaluated for other causes of their symptoms including a range of comorbidities and lifestyle factors.
How often have we been told that such symptoms were assumed to be because of either poor compliance or depression or anxiety? There is no careful evaluation of symptoms at all, there is just "doctor jumps to conclusions and blames the patient" all the damn time, because of course doctors believe that Levo is perfect.
...the cardiovascular and osteoporosis risks that are associated with very low TSH levels should be considered.
What about the risks of high TSH on the heart and the bones?
Maybe all Endocrinologists should have a Day Out with hypothyroid patients, so that they, the medical professionals, can learn a thing or two.
It is fine spouting about medical problems that one has never experienced but it is the patients who are at the brunt of their misinterpretation of clinical symptoms and relying upon the TSH alone which is, after all, from the pituitary gland.
I doubt I ever had a TSH tested until I did it myself.
Symptoms are unknown to the medical professionals and all diagnosis is made upon a TSH alone, no T4, T3, FT4, FT3 and thyroid antibodies.
I think that it is a refreshing change that the paper actually suggests considering signs and symptoms as well as lab tests and not over relying on TSH.
I can’t find any evidence that TSH has a direct effect on the heart or bones.
I have research that shows that TSH has no effect on bone mineral density and also that TSH has no effect on Atrial Fibrillation. I posted these papers recently.
Strangely (or not) the paper perpetuates the myth that a lack of TSH causes OP or AF.
So far as TSH is concerned there has only been a correlation shown, never a direct causation.
However sometimes weaselly the language, am I wrong in thinking that ever so slowly the light is dawning for better treatment of thyroid patients. I feel very gratified that some of the sentences could have been lifted almost verbatim from our papers. However they need to take the next big step - monitoring treatment by FT3 and neither FT4 nor TSH. Toe in the water yes, but not yet striking out swimming. And of course no apology for previous inadequate diagnostic guidelines and their adverse effect on people's lives.
I agree with you. I think its the first time I have read anything about over reliance on TSH and to consider signs and symptoms from any member of the BTA. It may be due to the hard work put in by Lyn and Lorraine et. al. I personally think that Prof Weetman not being on the scene is helping greatly as well. I really hope that this is a new dawn. I don't expect any apology, but I personally don't want one if they carry on moving in the same direction. that is sufficient in itself.
On looking at the reference list, none of our 30 papers is mentioned. I now realise that as regards understanding detailed thyroid physiology and the implications for diagnosis and treatment, these people are lightyears behind in their understanding. Literally there is an unsurmountable gulf between the practitioner medics and the analytical ones like our group. They really do show a lack of intellectual understanding of what it is they are saying, how correct it is, and questioning (not) the dodgy evidence they use to support their statements eg on OP and AF. In one breath they admit the indivduality of patients and the next put them altogether in the assumption that low TSH causes OP and AF. You can't agrue both from an individual standpoint and a group one at the same time.
One again I agree with you - mostly. I totally agree with you analysis and I am amazed that they still are promoting the idea that low TSH causes OP and AF. It clearly doesn't. I read your studies and I can see that, in their terms, they are cutting edge. Not for most of us on this side of the argument. Broda Barnes, Barry Durrant-Peatfield, Gordon Skinner, Sarah Myhill, JacobTeitelbaum, Mark Starr, even Ridha Arem have been saying similar things for decades. Your work proves in detail what we have bee saying and more besides.
My hope is that most GPs are so think skinned, arrogant, uneducated in thyroid matters, and not willing to listen, that to bring them up to date in one go would not sit well with them.
Remember that the medical profession ridiculed Dr John Snow (a Yorkshireman) when he deduced that cholera was spread by contaminated water from the Broad Street pump - not a miasma. The medical profession ridiculed Louis Pasteur when he discovered germs in the air. More recently the medical profession thought that peptic ulcers were caused by stress. They ridiculed Barry Marshall who said that they were caused by bacteria until he drank broth containing Helicobacter pylori. He contracted a stomach ulcer and a Nobel Prize. The debate is still raging about stains.
I am really hoping that they are taking the first small steps on a long (maybe not so long) journey, instead of waiting for the current lot to move on retire or die. The proof of any real movement will be in the NICE guidelines.
In the meantime, I'll be using your work when i visit my doctor or help forum members. I'll be putting it in front of the doctors and advising them of their duties under Good Medical Practice and the law to help patients. hopefully Lyn and Lorraine can influence the BTA members they meet to come further upstream a little quicker.
I'm not disagreeing about the earlier promoters of combined or T3-only therapy in suitable cases. I'd very much have liked to have met Dr Skinner and it is a pity we didn't overlap as it were. The point I have to make is that though these doctors powerfully advocated their position, the medical establishment wouldn't listen because they deemed the evidence anecdotal only and therefore it couldn't be presented and proved in the ways they believed necessary ie clinical trials. Because of the failure to understand individuality in response, all the clinical trials failed in showing any superiority of combined over mono therapy. We believed that the first essential step is to know scientifically/physiologically what is going on in detail, and what happens when the thyroid goes wrong and the varied response to treatment. This lays the groundwork for developing trials that are properly organised and can determine from an indivudal's viewpoint if they are or are not likely to benefit from combined treatment. That is the endpoint; to marry the science and the practicality. Merely saying again and again empirically the individual responses to combined/T3 treatment will cut no ice (and has not done so) with the powerful medics.
I totally agree with you. In the BTA statement, the BTA say that there is no CONVINCING evidence to support T3 therapy for example, yet there clearly was when it was written and there is plenty now. For example Dr Skinner wrote a study and had it printed in the BMJ (1996 I think but i amy be wrong - I'm at work and dont have in front of me) and Dr Lowe provided a terrific rebuttal of the previous statement.
I think that the strength of the evidence can be seen in the transcripts of Dr Skinners GMC hearings. At his second GMC hearing (I think) the GMC couldn't find anything wrong in his diagnosis and treatment of thyroid patients but did manage to include conditions on his license to improve his record keeping.
At his third (I think) hearing the GMC could find no fault with his practice and congratulated him on his work. Dr Skinners Cousel ripped Weetman apart for obsessing over a disease that does not exist and not treating a disease that does exist and his ridiculous adherence to the TSH reference range.
. In my view, there was sufficient evidence of sufficient strength to completely undermine the statement. But the vested interests overrode the compelling evidence and the BTA did not amend its statement after that hearing
They can make such sweeping statements because the BTA is a private organisation and is therefore exempt from Judicial Review. Their claim to write National Guidance may muddy the waters in that respect though.
They are backtracking on that now by their involvement in the NHS England debate on Guidance to CCGs. I think that your recent work is fantastic and clearly shows in detail that the approach is correct. it is my view that it is up to us as an expert patient group to ensure that the NICE committee and even the BTA (some may say its the same thing in essence) accept your work.
I met Dr Skinner. He was a terrific man, very clever and loved his whiskey. I think you would have got on very well with him.
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