I posted 5 days ago news of this publication, involving a coauthorship with our own and an Australian group. It is called: Yet another definitive paper on relation between FT4 and TSH.
I've thought long and hard about what it means regarding diagnosis and treatment. It only deals with FT4 and TSH relationships, but these are quite sufficent for anaylsing basic things about the relationship. What we know is that TSH and FT4 are interlinked, whereas TSH is not closely linked to FT3. But is it possible to graphically draw linkage of TSH v FT4 to cover the system and disclose help for diagnosis and treatment of the individual (an individual-free approach)? The paper shows that it is not possible in a general sense to derive information for the individual from a population. This is true whether the relation uses the traditional rectangle in a graph of FT4 v TSH or any other device. If this is so, then the individual is not served by an "in or out of range" philosophy but can only be diagnosed/treated on an individual basis. That is, medical art (face to face doctor/patient) is paramount, supported by, but not rigidly defined by, medical science, if a patient is to receive best treatment. In short TSH at least cannot confidently assess patient condition, for though it and FT4 are linked, one cannot produce a readily available algorithm to be useful. I think therefore though in one sense it joins the Journal of Negative Results in denying a simple outcome, but the negative results fundamentally promote the value of the old-fashioned methods.
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diogenes
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You are certainly adding to the sum of worthwhile human knowledge and endeavour.
For those uncertain about what the old-fashioned methods are, could you please rehearse / repeat them? Is this things doctors don’t do now but used to - like taking temperatures?
As far as I know: General demeanor of patient on presentation. Examination of skin on face, hair condition, eyebrow loss, feeling cold - hypo or hot-hyper. Heartbeat may be low. Kneejerk reflex. Brainfog. Maybe gaining weight for the first time. These may not diagnose with one parameter but all together are suspicious.
Raised cholesterol might be another marker....? It's the reason that my thyroid levels were checked leading to diagnosis. Fatigue must be a big one that affects most hypo patients and low mood/depression. Of course we know there are many hypothyroid symptoms, but these would likely be the main ones.
After discovering that I have a form of Thyroid Hormone Resistance and had been successfully taking high dose T3-only for some time my understanding GP - who has accepted this, and my right to Patient Autonomy - asked me how I intended to monitor my health, since lab tests no longer fulfilled that function.
My reply...."the same way that it was done before lab tests existed. Clinical evaluation using signs and symptoms" - then expanded on that
She looked surprised and said "OK"! She now leaves me to self-medicate with the very occasional catch up.
However, I accept that for most thyroid patients testing and clinical evaluation should ideally go hand in hand!
Alone, numbers on a computer screen are not enough!
You say...
....but the negative results fundamentally promote the value of the old-fashioned methods.
I wish modern medics understood this.
Thank you for that remark diogenes ...
and, for all you do to raise awareness of the sadly misunderstood subject that is thyroid testing.
With better medical understanding, patients would receive more appropriate treatment and would have a better quality of life.
Exactly why Dr Skinner diagnosed and Dr Peatfield [I saw for another reason] confirmed hypothyroidism - with all of those sign/symptoms - yet x2 endos 2008/09 decided otherwise. Drs S & P 2010 were shocked, as with many patients literally 'on their knees'. Undiagnosed by same hospital, different endo, in 2015, having had Armour T funded by NHS for IRO 5+ years.
Put simply: the more people don't know, the less they can ask!
"Statistical thinking will one day be as necessary for efficient citizenship as the ability to read and write!" Quote from the presidential address in 1951 of mathematical statistician Samuel S. Wilks (1906 - 1964) to the American Statistical Association found in "JASA",Vol. 46, No. 253., pp. 1-18. Wilks was paraphrasing Herbert G. Wells (1866 - 1946) from his book "Mankind in the Making".
The full H.G. Wells quote reads: "The great body of physical science, a great deal of the essential fact of financial science, and endless social and political problems are only accessible and only thinkable to those who have had a sound training in mathematical analysis, and the time may not be very remote when it will be understood that for complete initiation as an efficient citizen of one of the new great complex worldwide States that are now developing, it is as necessary to be able to compute, to think in averages and maxima and minima, as it is now to be able to read and write."
The really scary thing is - I’ve done a bit of stats and data interpretation (just a bit) enough to recognise people who have not and I can categorically say the doctors I have been dealing w don’t have a ‘ScoobyDo’. There is an absolute lack in their training.
Yes, totally agree - not a clue - yet let loose on people, some long ignored in any event, to wreak further havoc on the lives [especially longer term when then body isn't functioning as it could/needs to], and potentially premature deaths of patients. Scandalous!
Thyroid issues must surely go down as one of the biggest scandals in 'modern' medicine, especially in light of its promising start. Worse still, those who could/can/have helped patients have been hounded by 'the system'...
We have just met another couple of people who are coping on levo and thinking they are doing ok 🙄. Literally, so used to being below par they think that’s ‘normal’. After all that is what the doctor has been telling them all these years, normal normal normal normal.
There are those who do well on treatment = happy accident or find out quickly enough what’s needed (thank you thyroid UK) 😉👍
Those who get mismanaged for years and end up being complicated cases.
Those are not straight forward cases from the outset and get mismanaged because of this.
And a huge swath of people who think they are ok.
I wonder just how many people are really being adequately treated 🤔?
Wonder what the stats are on Complications arising from under medication 🧐 ?
The stats [a once favourite discipline of mine] on Complications [potentially hidden under a rug somewhere] would be fascinating!
Yes, some people may only need a small/medium 'top-up of T4 to be, maybe not always up to their usual, able to function and live OK.ish. Others feel as though they've been perpetually 'hit by a truck' and lose so much quality of life; some losing life prematurely.
I was undoubtedly hypothyroid from 2003/2007 [even got a gallery of photos depicting this] yet from the outset Levo was no use for me [hyper within weeks].
T4 was, quite properly in Feb 2010, Dr Skinner's first port of call; so, Armour was then prescribed, which I used for IRO 6 yrs but still not satisfactorily with so much T4, yet enough T3 to 'lift me'. May 2010 Dr P confirmed my existing Dr S diagnosis - having also readily accepted by GP and with NHS funded imported Armour Thyroid. I actually went to see Dr P to try to reduce the supplements I'd 'added to my collection' to try to 'fix myself': he approved them all and added a couple more, advising that I'd need T3 for life. Seems that most knowledgeable doctors - thinking outside of this relatively newly concocted system [tightened with each decade!] - are outlawed by that most perfunctory, uncaring system.
GP/Endocrinologist efforts... wow! I've said enough on here over years, but I so feel for anyone outside of their so-called 'standard treatment'.
The more I read on hear Linda, more convinced I am that delays in treatment and worse still mistreatment leave people with more complex health issues that are either difficult to wrangle or worse still irreparably damaged.
I met a lady recently, who, I got an inkling had a deep seated health issue so I mentioned being hypothyroid. She said she was too. She has had operations on her hands for carpel tunnel, has various other health issues and thinks she is being adequately treated. And yep she’s had her levo reduced to that if someone half her size.
I think after telling her my journey, I may have sewn the seed of doubt.
Carpel tunnel was one of my hypo symptoms. I was in line for an operation on both hands. The nerve conduction tests came back clear so ‘specialist’ sent me back for the same test - rather than thinking about it. Would they eventually have thought oh well- let’s just do it anyway????
Because they were doing the same thing and expecting a different answer, I was sufficiently concerned about competency to just take myself out of the loop. So glad I did as a few years later, when the levo kicked in, my hands got better. I have a little arthritis in my middle finger on my right hand, but other than that - I’m fine. I’ve gone from needing Velcro closers on shoes to opening jars again.
Chatter here, and in many other places, strongly suggests to me that long-term fairly mild hypothyroidism has a cumulative impact which could outweigh that resulting from short-term fairly severe hypothyroidism.
For example, you had a partial thyroidectomy for reasons other than Graves', sending you from perfectly well to distinctly hypothyroid, suddenly. Then, even if there is a bit of a gap, you receive decent treatment, I think there is reasonable optimism and recovery.
But someone who has lived five, ten, twenty, thirty or more years hypothyroid or (all too often) simply and only mildly/moderately under-treated/wrongly treated, considerable improvement can be achieved but less optimism.
The anecdotal evidence is there in people’s stories and I’m pretty damn sure would be born out in the data if it were to be asked the right questions. But that pivotal inability to interpret blood tests including consideration of symptoms will be having a profound effect, not just in the field of hypothyroidism. It is tragic and horrific.
I must be pretty lucky. I am sure I had thyroid disorder from my early 20’s. I was probably mildly hyperthyroid for most of the time eventually getting increasingly longer periods of under activity as I switched from one state to the other. I wasn’t diagnosed until 53 although I had been very suspicious since my 40’s that something was not right I had so many health problems, and that something was thyroid related because of the family history of it. I had asked but it was always poo pooed. I was grim by the time u was treated then had another three years of hell on Levothyroxine. I am amazed how well I felt once I took NDT better than I had for a very long time. But I can’t know if my health has been permanently compromised, time will tell. I dont feel as well as I did, is it age or long term damage from all those years of things not being quite right. You read those on t4 monotherapy live as long as those without thyroid disorder but I find this very hard to believe. How are these stats being derived and are they really robust?
Indeed, Charlie! We begin with a few ++ signs/symptoms and the list grows and grows; the next cry from docs is 'hypochondria' [not to our faces, of course]; next step is to ignore the predictable increase in ill-health, inevitably occurring due to absence of vital hormones responsible for our bodily functions. Once labelled, we're pretty much doomed.
All you say above is, in the main, due to arrogance [aka ignorance] from those entrusted with our healthcare This ought not to be permitted to continue... unless the illnesses keep the boys in work; [sorry, tongue in cheek]. Acute medicine is still, despite financial constraints/staffing etc etc, excellent in most quarters.
Yes, entirely re your carpet tunnel experience: so pleased you got that aspect sorted and yes, your Q rather than think about it! I'd experienced tender/sore wrists [along with +++] yet got to the point where, unless critical [like my current < 35 C temp in summer, sleeping in winter clothes under an electric over-blanket left on all night, with layers of duvet/bedspreads and my heart...] there's not much point in even mentioning anything else. Made up their 'minds'. Yes, doing same thing - expecting a different result - guess science has eluded many of them.
Linda it really is true! Science does seem to have eluded them. I’m no genius had to work so hard through my studies, but environmental science does give you an open enquiring mind- or do the open enquiring minds get drawn to study? 🤔 hmmm either way- I was agog at how I was able to tie one GP in knots just because she didn’t know the basics. After only 3 months of reading a completely alien subject to me. One that should have been all too familiar to her. My feeling is they seem to absorb text and could probably recite chapter and verse, but cannot navigate within their subject area only read sentences from it.
Probability, Likelihood, Inference, appropriate methodology, population statistics, individual differences, (oh and QM as it relates to measurement), 'attitudes', whilst doubtful this can be 'taught' to training medics [needs to be!], something approximating those aspects must surely figure somewhere!? Where there used to be talk of a 'Counterfeit Education' [1 in 10 prepared for Quad and Cloister, the rest receiving a counterfeit education], many of these medics have certainly had some sort of education in respect in comparison to that of a lot of their patients. How don't they know vital 'stuff'?
Interesting and understandable that you could tie a GP in knots on the basics. Imagine how it must feel for them to be, often, treading on eggshells 'not knowing' their job! Suppose that's why so many can be quite so defensive, I recall years back saying to students, "There will be things [of course ] that I don't know so please ask anything you want and,,if I don't know, I'll endeavour to get back to you for next time". Anything less would be dishonesty, yet this is our HEALTH!?
that’s is the only way to be authentic in knowledge. When you know ENOUGH you realise you can’t possibly know it ALL. It takes the embarrassment out of it! A blissful state to reach. And a good example to teach! ❤️
Ah, authenticity 'to the best of one's knowledge, capacity and ability', then we can't go far awry: [I don't talk in 'right' or 'wrong', there pretty much is none and certainly no ALL]. Yes, taking the 'superiority-know-it-all' attitude out of it can lead to a way more open atmosphere - with anticipation for growth - rather than dictatorial... you know something, most of us were brought up/schooled to that unthinking level. We also have 'choice' [well, don't start me on that... rather like 'freewill', ultimately, pretty delusory], yet to some - workaday sense - we do make choices. 💚🎶
Returning to education at 24 was a revelation. Having had my enquiry all but squished out of me bar 3 very good teachers who had managed to keep an ember burning. Oh joy of enquiry and a little, just a little more knowledge please. 😂 🍷
Returning at 27 for me! I loathed what they tried to do to you at school Returned when I felt ready to want to learn [education wasted on the young 😅 - joking, almost] and wanting to 'stand up psychological/philosophical notions' I had up against what was out there. I went off to take 'A' Levels for uni entrance and certainly wasn't disappointed, Best experience ever came from a former physicist - NASA, Hawker Siddeley + - who became so fascinated by individual human differences [started with airline pilot performance] that he changed to become Professor of Psychology. He was from the Yorkshire area and said, "Thank goodness for scholarships"!
Us fortunate students had the privilege of being taught "The History of Science" [from Ancient Greeks, right up to date - this guy could write in the Ancient Greek language - was an atheist yet could quote pretty much anything from King James Bible], QM as it related to measurement, Risk Assessment [hence the probability etc mentioned above]. Perception in ways that aren't usual to Undergrad materials and even 'Fringe Questions', debunking the paranormal [with UFOs said not to defy the current laws of physics... of course not!]. Whatever else I studied, incl. philosophy and formal logic [starting with Joint Hons Psych + Philos] this Prof was everything any enquiring mind could wish for in their wildest dreams. 'Joy of Enquiry' for sure.
oooo feeling a little envious in a really good way! Yes my journey was a ball. Very interesting pick n mix of really diverse individuals- very environmental science (eclectic and eccentric). Changed my thinking and gave me the ability to critically think, priceless…..
Before I studied everything was black and white, but now I see in technicolour- that’s the only analogy that fits for me.
I still love learning! I’ll sign off on a little anecdote that will hopefully make you laugh. I finally got to do one of the things I have always fancied doing. I was still building up to full therapeutic dose of Levothyroxine when I started. I did my 18th edition City and Guilds domestic electrical installation summer before last 2021. Loved every minute of it. I’ve always like electrics and wiring of houses. Vivre life long learning! 🤪👍
Well done! So... Levo 😀 Still a few things I'd like to learn [although we're doing it every day], incl. some computer-based stuff. Oh, studied AI so long ago that.... Good to talk!
BTW, I take T3 only wish I could consider some NDT again. Best wishes and thanks. x
Yes it was always obvious to me that what I did not know was out of all proportion to what I did know. Like a grain of sand in an ocean! Also knowledge is ever changing it’s not set in stone but very fluid depending on the perspectives of the time.
It’s quite frightening to think most people probably don’t grasp this patently obvious fact. I dread to think what if anything underpins their understanding or how they actually comprehend anything.
When I read all those scientific papers trying to keep myself informed (mystified more like!) and they drop down to molecular or perhaps atomic levels and start on active transport systems and all those abbreviations, I just think things are very complicated the more you delve into the microscopic and there it is in every last bit of our bodies it’s utterly mind boggling, how could anyone know all that? The more you look the more you find to look at!
I think what it comes down to is we need the medical profession to acknowledge that any test is a guide and symptoms of the subject must be considered in the round..
The quest by the medical profession to REPLACE enquiry into a person’s well-being (symptoms) with a test of any sort is the reason medicine is in such a mess.
We have a friend who is hypothyroid. He is on prescribed medication to raise his stomach acid , he is also on a proton pump inhibitor 🙄. I’m sorry but that just sounds ludicrous. He has heart problems, probably exacerbated (if not caused) by years of under medication because everything is about people being ‘drop kicked’ somewhere in the range and some (most) doctors think they are really hitting the spot if they get their patients in the mid-range.
Any test should be calibrated to the patient- not the patient to the test. It is this fundamental flaw in medical practice that needs to change or any test will fall short, not for its own lack, but as a result of the lack in those using it.
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] that I don't know 
New paper on TSH and FT4 reference ranges
The PrescQIPP Recommendations - NOT A BAN on T3
Medical Paper please – low TSH on T3 only
