Seems entirely reasonable, to me, that we should be looking for other markers.
Even those who get as far as suspecting issues like an adenoma or a mutation affecting thyroid hormone receptors have difficulty in translating that suspicion into proof. If there are markers which are relatively simple to test, it might well make a substantial difference.
Exp Clin Endocrinol Diabetes. 2019 Oct 7. doi: 10.1055/a-1012-8484. [Epub ahead of print]
Unraveling the Molecular Basis for Successful Thyroid Hormone Replacement Therapy: The Need for New Thyroid Tissue- and Pathway-Specific Biomarkers.
1 Medizinische Klinik I, Universitätsklinikum Schleswig-Holstein, Lübeck, Germany.
2 Institute for Experimental Endocrinology, Charité -Universitaetsmedizin Berlin, Berlin, Germany.
Abstract
Thyroid function is conventionally assessed by measurement of thyroid-stimulating hormone (TSH) and free circulating thyroid hormones, which is in most cases sufficient for correct diagnosis and monitoring of treatment efficiency. However, several conditions exist, in which these parameters may be insufficient or even misleading. For instance, both, a TSH-secreting pituitary adenoma and a mutation of thyroid hormone receptor β present with high levels of TSH and circulating hormones, but the optimal treatment is substantially different. Likewise, changes in thyroid hormone receptor α signaling are not captured by routine assessment of thyroid status, as serum parameters are usually inconspicuous. Therefore, new biomarkers are urgently needed to improve the diagnostic management and monitor treatment efficiency for e. g., replacement therapy in hypothyroidism or thyroid hormone resistance. By comparing animal models to human data, the present minireview summarizes the status of this search for new tissue- and pathway-specific biomarkers of thyroid hormone action.
Its true that we need new measures, but I wonder if they also include older measures that have fallen into disuse, like cholesterol and the Achilles reflex.
I did get my Achilles reflex tested by the doc who finally diagnosed me and he was quite young. No one else has ever bothered perhaps the endo did initially but I am not sure he did. It is supposed to be the most reliable test I think I read on an article linked to on here a few years back. Just too simple and hands on compared to diagnosis by numbers 🙄
As someone with RTH (and I know I'm not alone here) who has failed to convince the one endo I briefly visited, that there must be, as yet, undiscovered genetic variants causing RTH, I would love to see more research carried out.
I can list my symptoms that indicate RTH and I can safely self- medicate with enough T3 to send medics in a spin, I can monitor and recognise signs of overmedication, I have a basic understanding of why my cellular level T3 must have become very low thus leaving me barely able to function. ...and I can show the improvements a supraphysiological dose of T3 has made.
Members know why I can do this....."Dr Thyroid UK".
Conventional medics were misdiagnosing and wrongly medicating me for decades as I slowly became more ill..... it seems my body was very slowly shutting down.
It is incomprehensible in the 21st century that medics are treating thyroid disease with apparently less understanding than that of Dr William Ord in 1877.
Members will be familiar with the sometimes lonely place that is self medicating for RTH without the safety net of the NHS...it is the last resort, one that many never reach. I'm now almost sure my maternal grandmother died because of RTH!
Ah well maybe I should start and play the lottery.....a few million pounds might help kick start the research we need !!
Just having another rant while I consider another T3 increase...
We have all seen lottery (or other windfall) winners saying lots of things: house for my parents, holiday for the family, following Robbie Williams and seeing him 40 times in concert, in places as far flung as Barcelona, Vegas, Berlin and Belgium (using a tanker full of jet fuel to do so, I assume), filling a new Range Rover with Easter eggs, boob jobs (for two sisters and herself), or the other things winners spend on.
Having a large amount would enable so much to be done. A lot of research is being done but we don't see much of it arriving in clinics. As I see it, we need research to answer many of the basic questions that have simply been ignored (or, charitably, missed). We need the possibility of legal action (e.g. judicial review of new NICE guidelines).
I was being serious....but it would take many millions that I'm never going to win!!
Legal action isn't going to instigate research...we need researchers hungry for answers, philanthropic backers with deep pockets and medics with open minds.
My first paragraph was tongue in cheek (but apparently real) examples of what winners did.
My second was very serious.
Law is often a bad choice but there are times when it is the appropriate way of overturning a current practice.
Ironically, if the UK did rework their entire approach to thyroid issues, it just might be good for our economy. Not just helping people to work effectively who might otherwise not be able to do so. But novel pharmaceutical products. Reduced costs of multiple treatments which would not be needed (and might be ineffective). Enhanced reputation.
One of my sons is a senior academic involved in international research ....research cannot be instigated by legal action as you appear to suggest. But , maybe I misunderstood your point of view, if so...apologies.
I'm sure that we here all agree that a seismic shift is needed in relation to the current diagnostic and treatment protocols relating to thyroid health, but, until the powers that be /the decision makers adopt a very different mindset (by admitting they are mistaken) I doubt we'll see change any time soon.
To quote the old adage, "There are none so blind as those who will not see"
We can dream....I would love to have the millions needed to fund good thyroid research!
With thanks, again, for all the work you do to help ...TUK is a life saver.
If a court determines that NICE has misinterpreted research and evidence, then they could be sent back to review their guidance.
If NICE were in the position of being told that they had failed to, for example, prove either that levothyroxine is at least as effective as desiccated thyroid, and any position taken on prescribing desiccated thyroid is unsupported by research, there would be some impetus behind performing further research.
If diogenes, et al, have shown that all T3 research used to come to their decision on prescribing T3 is invalid, the establishment might think that further research is actually required.
Most particularly, if a court determined some specific points were unproved (scientifically), then they be unable to continue to claim that they are valid.
But, you say, "the establishment might think that further research is actually required."
I agree, they might, however, that is only a conclusion not an instruction from the courts to instigate that academic research.... which it appeared you were suggesting when you wrote, "My second was very serious." ... "We need the possibility of legal action".
We need a young generation of researchers to advance thyroid research, to overturn some of the current nonsense that is blighting lives and to uncover more genetic variants responsible for those blighted lives. A big ask that will not happen without massive funding.
That's the point (in my acknowledged irritating old woman way!!) that I was trying to
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GP "has concerns about results"
Being gas-lit: NOT Hypothyroidism, it’s Silent Reflux says Consultant Thyroid/ENT – Advice requested.
