I wrote a post nearly 6 months ago saying that a paper we'd submitted to the BMJ had been rejected fairly brutally, but we'd had it (provisionally) accepted by BMC Medical Disorders. I could not believe it when in spite of my repeated queries, there was no communication whatever about the journal's intentions to print or not. Finally this morning after mailing a complaint to the Managing Editor of the journal I received apologies and acceptance of the paper. I appended the conclusions of the paper in the post headlined
"Paper rejected by BMJ accepted elsewhere."
The paper describes the need for a rethink of diagnostic procedures in hypothyroidism. I append again the conclusions:
Conclusions
Until the situation is clarified all currently available treatment options should remain on the table and the focus should remain on facilitating the free choice of prescriptible treatment options rather than imposing new restrictions. The biochemically based reason for the rise in patient complaints has to be addressed, not a shift on to them of blame and burden of proof.
This invites a resume of the current state of affairs.
It appears that what we are witnessing constitutes an unprecedented historic change in the diagnosis and treatment of thyroid disease, driven by over-reliance on a single laboratory parameter TSH and supported by persuasive guidelines. This has resulted in a mass experiment in disease definition and a massive swing of the pendulum from a fear of drug-induced thyrotoxicosis to the new actuality of unresolved designation of hypothyroidism. All of this has occurred in a relatively short period of time without any epidemiological monitoring of the situation. Evidence has become ephemeral and many recommendations lag behind the changing demographic patterns addressing issues that are no longer of high priority as the pendulum has already moved in the opposite direction. In a rapidly changing medical environment, guidelines have emerged as a novel though often over-promoted driver of unprecedented influence and change. Treatment choices no longer rest primarily on the personal interaction between patient and doctor but have become a mass commodity, based on the increasing use of guidelines not as advisory but obligatory for result interpretation and subsequent treatment. Contrary to all proclaimed efforts towards a more personalised medicine, this has become a regulated consumer mass market as with many other situations. This is of little benefit to patients who will continue to complain, and with some justification, that the medical profession is not listening, thereby abandoning one of its primary functions in the doctor-patient relationship.
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diogenes
Remembering
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I admire your chutzpah Diogenes, complaining to the Ed of a journal. Many of us social scientists are still stuck in doffing our caps to these guys (as they mostly are).
Congratulations! As a new TT, this is welcome news. I will look for this paper and bring it to my endocrinologist. I am in Canada , so we don’t have it quite as difficult as you do in the UK , but the hospital labs here have now done away with testing for everything but TSH except if requested by an endocrinologist. So if you want to be followed by your GP with your blood work , good luck to you because it won’t happen. Thanks for your persistence and good work.
Well done for not accepting their narrow-mindedness and pushing till your paper was accepted for publication. Thank you. However, HOW are we to change the medics entrenched ideas? They have no intention in changing their ways of thinking, or rather not wanting to think and see the patients dilemma? We keep trying to "educate" them but they resist at all costs. many thanks for trying to force a change in their archaic attitude.
It will be a long haul I'm afraid. Rule of thumb: the longer something wrong is believed to be right, the harder it is to alter minds when the truth emerges. Not all lost hope though: the US seems to be stirring at least.
Of course, I understand. So most of us will probably not benefit from this turnaround in the thought process of medics but it does give some hope for the future generations of thyroid sufferers. Thanks again for starting "rolling the ball".
I wouldn't despair. If we, patients and researchers can all bring the ethical implications of wrong diagnostic/treatment modalities to the front, then the medical profession will have to respond. The big hurdle is to get FT3 as the diagnostic of choice in treatment and this will require a huge change of thought in thyroid treatment, not least in the US where T3 measurement has always been an almost ignored category of test.
Thank you for your encouraging words, Diogenes. Unfortunately I, and perhaps many other people, do despair, having waited so long for medical help. Let's hope something changes very soon.
Ah ok. I am not sure I fully grasp the theory yet and advantage over current practice yet. My simple understanding is that when monitoring symptoms, free T3 should be in range and TSH is of less significance... alongside clinical symptoms, but I am probably missing something! Are there any papers looking specifically at comparing the different blood tests with outcomes in a clinical setting? What is the drawback to this approach in the eyes of your peers? This sort of approach seems to be advocated on here by posters who obviously have personal belief that this is working for them. What method of free T3 testing are you advocating? I have read that the one step approach may not be as accurate as two step. I am not sure what is currently used (ie. in nhs hospitals or privately). A paper on treatment with liothyronine (Dayan) seems to advise checking peak T3 levels 2 hrs post dose and avoiding Tsh suppression as opposed to the 12 hrs post dose and advice that tsh is almost always suppressed on T3/NDT. Sorry about all the questions...!! And I obviously appreciate if you reply. I am interested in understanding it all better, thanks.
"Free T3 should be in range and TSH is of less significance... alongside clinical symptoms". From all our physiologically based papers that is correct. In the eyes of our peers, FT3 measurement is irrelevant and unnecessary and shouldn't be done because a combination of TSH (in healthy range) and FT4 suffices to control therapy. Therefore there aren't many if any papers on a comparison of the two approaches. One-step v two-step FT3 assays? A red herring. Both work about equally well if the development of the tests is good - which it often isn't. Unfortunately, the healthy range for TSH isn't an adequate test for successful treatment, FT4 can be high in or above range and only FT3, the biologically relevant hormone should be in its reference range but above the median. T3 treatment either alone or in combination suppresses TSH strongly but since TSH isn't a satisfactory method of assessment (against present beliefs) this doesn't matter.
Ok thanks. I suppose by promoting the theory on here people can take things into their own hands and develop their own practical application of theory based on the other people. I presume that is where the advice comes from? Is there a clinician you work with that uses this approach in practice? Greygoose linked me in a paper from Ito you had posted looking at athyroid people suggesting Low Tsh was associated with optimal treatment but very suppressed tsh was indicative of being overtreated or hyperthyroid (in the conclusion). Are you proposing tsh is ignored altogether? On the assumption everyone has their own set point of T3, what if treatment pushes this level above their set point... presumably it will peak and trough depending on dosing regimen of treatment. So when is the right time to check it and how does one use this for dosing decisions? GPs are critised for not following this approach, but if I were to suggest this to mine, how is it applied in practice?
I'm not proposing TSH is ignored totally. If TSH is measured, with FT3, and is found suppressed with a within-range FT3 then TSH is not indicating over treatment. TSH is best when detecting hypothyroidism for the first time (better here than FT3). In therapy the opposite is true. As for fine-tuning, this has to be trial and error on response to therapy rather than worrying about numbers per se.
Don't know certainly, but taking T4 shortly before testing is known to raise FT4 by up to 20%. However with a halflife of 8 days, leaving a day between taking T4 and testing will only have about a 5% depressive effect on normality.
Ok that’s very helpful to understand. I meant in respect the entire approach of monitoring with T3 and aiming for mid to upper range (presumably of the given reference range). I have tried to understand some of the maths in your papers, but to be honest it goes over my head! Obviously applying a theory to practice, particularly one such as thyroid control is fraught with challenge and complexity! I was just interested to know if this is used in practice by your colleagues, who presumably understand both theory and clinical practice well.
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I should add, clearly some people are very good at knowing how much TH they need to optimise their symptom control, but others not....(myself included)
Regarding the use and interpretation of FT3, Larisch and Dietrich do so. Hoermann and I are retired out of the practical scene but Hoermann did work in this way when active.
Thank you for all your efforts in this. I really appreciate the way you continue to push for what is right. Ultimately, if we chip away at the rock piece by piece, it will collapse in the end. 🤸🏿♀️🥛
WoW - again, thank you so much! The lift I'm sure that many of us get when we see something from you/colleagues - a glimmer of hope that someone, somewhere is 'doing the right thing' in that good old tradition of research. Thank you
I’m not sure who you are - whether you are a doctor or one who suffers from the disease . But you’ve done a wonderful thing you have moved a Mountain - or at least become a catalyst.
Even though I am here in the US we still suffer from the same nonlistening attitude in the same TSH rules everything. I pray that your efforts are blessed.
diogenes you and your team are stars! I'm so glad you did not just accept the brutal dismissal of your paper, and fought back. Keep up the good work and thanks you to you all.
Congratulations. Well done. Let’s hope some student doctors and nurses will read this and we will have a better future for thyroid disease...as well as it influencing their care of other complex diseases!
Congratulation and huge thanks Dr Midgely, you deserved to be named here,... and in lights!
Like dripping water your remarkable persistence will eventually penetrate the granite like resistance of the "establishment". who are now standing on shifting sands.
Thank you for the encouragement. However I know well about not giving up on things. I fought for almost 20 years with an eminent scientist about the validity of the FT4 and FT3 assays I'd invented. He had the bee in his bonnet that the basis of the tests was wrong, and no amount of argument would shift him - indeed I wouldn't wonder if he died a few years ago still with a derisive curse on my name. In vain did I point out that his theories and denunciations had no relationship to real performance and that any deficiencies he rightly pointed out were minor and indeed corrected by another improvement. The whole thing finally collapsed into futility. I simply point this out to show that in some people's minds, matters are clear and unmovable, despite any evidence that questions their position. This attitude is I fear rife among the medical fraternity (and sorority). Their unquestioned belief in their superiority is the fatal block to being openminded about evidence. I quote Oliver Cromwell: Think in the name of God that you may be wrong!"
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