The questioning of using TSH as a standard diagnostic in therapy and the realisation that patients exist outside the "norms" of T4 treatment is coming out all over the place. So far I can't raise this MS in total because of the paywall but the summary gives a good idea. One of the authors is from Newcastle on Tyne so even the UK is taking notice. I do hope that this is in time to influence the new NICE guidelines coming out later this year.
Endocrinology
Therapeutic challenges in the application of serum thyroid stimulating hormone testing in the management of patients with hypothyroidism on replacement thyroid hormone therapy: a review
Salman Razvi & Ulrike Hostalek
Received 11 Dec 2018, Accepted 08 Jan 2019, Accepted author version posted online: 16 Jan 2019
Thanks. On reading the full paper, I'm disappointed. Still the silly insistence on keeping TSH in the reference range on treatment. These people wear the strangest spectacles that only let them read what supports their point of view.
let them tunnel off on their own journey and leave us, the patients, to follow our relief of symptoms methods by being sensible/knowledgeable and, of course, saving thousands of £s for the NHS by sourcing our own and having less to do with doctors/endocrinologists. My goodness - we can then have a symptom-free and normal life.
Yes heuristics undoubtedly rule, but specificity is improbable too.
Samuel Wilks (attributed to H G Wells, 1947/8): “Statistical thinking will one day be as necessary for efficient citizenship as the ability to read and write!"
Inability to estimate probability, likelihood and/or inference, means what we have today is almost a certainty... people unable to decipher their world.
From the paper, on the subject of changing formulations of Levo and numbers of adverse events that follow :
"It is important to recognise that new strategies are needed in the age of social media to handle an increased rate of reporting of adverse events, in a way that allows clear identification of a new safety signal."
I would translate that to mean that the authors feel keeping patients ignorant of changes to medication would reduce adverse event reporting. Also, patients knowing how to report adverse events is annoying too. If the patients didn't talk to each other on the internet then there would be fewer adverse events.
Personally, I think this attitude from the authors is shameful.
I did find this bit of interest (my emphasis) :
"Other limitations of the TSH test (excluding patients diagnosed with pituitary disorder or pituitary tumours) include unreliable readings due to non-thyroidal illness, recent treatment for thyrotoxicosis, concomitant treatments that interfere with thyroid hormone function or the TSH assay (including lithium, amiodarone, glucocorticoids, non-steroidal anti-inflammatory drugs and others), or disorders of thyroid hormone metabolism.19,21 Treatment with metformin has also been shown to reduce levels of TSH in euthyroid subjects,22 suggesting careful attention to thyroid function when starting, stopping or changing the dose of this widely-used antidiabetes agent."
I wonder how many doctors have reduced Levo doses of diabetic patients on Metformin, making any tendency to obesity that much worse?
Regarding NSAIDs, I wasn't aware there was a connection between them and the thyroid. I did a search and found this from 1994 :
Effects of commonly prescribed nonsteroidal anti-inflammatory drugs on thyroid hormone measurements.
According to that abstract one of my prescribed painkillers reduces levels of serum T3. What fun.
It did occur to me that if this 1994 research was replicated today the researchers wouldn't bother testing T3.
I was under the impression the new nice guidelines were out and having read them I was very disappointed. I didnt want to mention it to anyone as so depressing. For a long time there were no nice guidelines but there is something available now that I read a couple of weeks ago. It makes one feel murderous.
• in reply to
I’m not in the UK so I can’t see the guidelines. What did they say?
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It appears that they have raised the TSh to 10 to be diagnosed and there was a lack of guidance on issues such as how to treat effectively.
It is more than frustrating and I can relate to your word 'murderous'.
I think what we should do is insist that those who are to be qualified to treat/diagnose people who have hypothyroidism, that No.1. is that they themselves have to have hypothyroidism.
No.2. Maybe have their glands removed, so that they can actually come to terms with hypothyroidism.
3. Not provide information to them so that they have a 'real life' experience of what it is to feel so, very, very unwell despite taking levothyroxine.
5.The reliance of taking account of the TSH number alone with disregard to patients' pleas that they feel very unwell indeed.
6.Not to take FT4 and FT3 into account and make them wait until the TSH reaches 10 before prescribing at all.
The problem is shaws is that doctors have to come from a very healthy stock to manage the training. There are statistically very few over weight doctors and any tired ones would drop out. They are a healthy bunch and frankly haven't got a clue as a result. I would love to remove the thyroid gland of a few endos.
My doctor is overweight - a little round man. And unhealthy. Even at my hypo worse I could have beat him at the 100 metres. And the locum I saw once was very big - and said he had just found out he was hypothyroid too. Hope he’s a better doctor for it. 🤸🏿♀️
you do get them occasionally especially if they are a bit older but my Gps surgery has 8 GPs all slim and I cannot remember ever working with a fat one all of my years in nursing. There is about a 50% statistic likely hood of some body having a weigth issue it is nowhere near reflected in the medical profession.
Oh but there were guidelines before... people were conned, including some GPs
DEPARTMENT OF HEALTH RESPONSE: Our ref: DE00000756922
Published on 15th November 2013 00:27 Updated 1st May 2014
Dear....
Thank you for your email of 4 February [2013] to Jeremy Hunt about hypothyroidism treatment. I have been asked to reply.
I should explain that the Royal College of Physicians (RCP) and the British Thyroid Association (BTA) are independent of the Government. The Department of Health has no plans to ask the RCP to withdraw its clinical guidelines for the treatment of this medical condition. Nor does the Department have any plans to produce guidance on the diagnosis or treatment of hypothyroidism. UK Guidelines for the use of Thyroid Function Tests are published jointly by the Association for Clinical Biochemistry and the BTA.
Doctors are encouraged not to rely too heavily on the results of blood tests but to use their clinical knowledge and an assessment of the symptoms experienced by individual patients in making a diagnosis for thyroid treatment. Doctors are free to use whatever guidance they feel is appropriate when making a diagnosis. This includes guidance published in other countries.
I should add that under their terms of service GPs are allowed to prescribe any product including any unlicensed product or product not licensed for a particular indication that they consider to be a medicine necessary for the treatment of their patients under the NHS. This is subject to two provisos:
– the product is not included in Schedules 1 or 2 of the NHS General Medical Services Contracts (Prescription of Drugs etc) Regulations 2004 otherwise known as the Selected List Scheme; and
– GPs are prepared to justify any challenges to their prescribing by their primary care trust.
It is the responsibility of health professionals to decide on the most appropriate treatment for their patients. If a person has any concerns over their treatment or the drugs they are prescribed they should raise these concerns with their GP or consultant.
I hope this reply is helpful in clarifying the Departments position.
Yours sincerely
Peter Wozniak
Ministerial Correspondence and Public Enquiries
Department of Health
============================================
The Secretary of State for Health states doctors can use other thyroid hormones other than levothyroxine only; they can prescribe unlicensed drugs; they can follow whatever guidelines they wish even if they are from another country.
I'm just wondering Diogenes is the Medical Academia ever going to learn that thyroid patients most important thyroid markers are in FT3 FT4 values . And that TSH is *not* a thyroid but rather a pituitary marker . TSH is valuable in thyroid patients when thyroid patients are displaying hypo symptoms .
What is to me the most unbelievable outcome is that they quote two of our papers which rubbish the idea of using TSH (esp the healthy reference range) for controlling therapy and seriously question clinical trials, yet myopically ignore what we said and wrote in those connections and simply repeat their emptyheaded mantra as if nothing had happened. I don't understand idiotic behaviour like that and nor am I impressed with the Newcastle people if this is all they can come up with.
ha ha - Miss Marple. It did cross my mind about Big Pharma. After all, how much monies would they lose if we were diagnosed upon our clinical symptoms alone and given a trial of levo or NDT.
I thought it wasn't allowed to have a 'connection' between research and companies who produce certain products.
Unfortunately, it is ok to have "conflicts of interest" so long as they are declared, as if a declaration was proof that no bias took place.
I think they have to spin the argument in favour of LT4 monotherapy so that they do not open the floodgates about the actual improvements on T3, and indeed its effect on TSH.
I've had some indirect contact with Razvi. A gastroenterologist I consulted decided, without my consent, to ask him about my 'unconventional' thyroid treatment. Stupidly, I'd told the gastro that I was under the care of Dr Peatfield, which brought forth from Razvi remarks about Dr P's qualifications to practice in this area and the assertion that my treatment was dangerous. I chalked him up as an idiot to avoid in future and expressed my considerable annoyance to the gastro.
Wow Hillwoman - no you didn't stupidly tell anything - you were doing what many of us have done, to try to help ourselves in the face of ignorance. Thank you, another name to avoid, like I'd go near these jackals, with that description seemingly being the rule, not the exception. People have no idea. Dr P is a rose in a dung-heap and knows more about hypothyroidism than most of them put together. As with Dr Skinner... someone to this day still being ridiculed by incompetents.
I also think the most important marker for thyroid health is health, the freedom from symptoms, a healthy heart rate, normal temperature and all round well being. The idea that you can accurately measure any hormones and find any consistant number to suit all people has to be an idea driven by silly men. All women know that hormones are random, unreliable and prone to unpredictability. The problems seems to be that people want to make hormone health and treatment simple when it never will be and frankly most doctors have neither the brains , time or caring attitudes to apply themselves to the issues. Thank God for TUK and the ability to buy our own hormones.
Yes you are right and I wouldn't be surprised if this was stopped. I should imagine we on this forum might not be popular amongst the professionals but we know more, suffer more, especially if we are also ignored in preference to their guidelines which don't guide us - who don't do well on levo - to good health.
I totally agree with you . It's papers like this that treat patients so inadequately . And there for patients can not get the care they need and deserve to receive to feel their *Optimal*. It's a vicious circle .
Thanks for posting and nearly all of the 'positives' that researchers find seem to be ignored completely. Why is that? Why continue the suffering and disability caused to many who are refused incremental doses and doctor is happy to keep the TSH above 5 but who prescribes alternatives individually for disabling symptoms.
Hmmm. Some of it doesn't appear to make sense: "This means that, for example, an abnormal FT4 level may persist despite TSH being within the normal range, and normal FT4 level for one patient may be abnormal for another, so that adjustment of TSH levels using LT4 in an attempt to corral thyroid marker levels within reference ranges may result in appropriate thyroid function for that individual." I feel that should have been "in inappropriate". And that's not the only typo/awkwardness - I feel it needs another edit. Very, very cautious ("Normalising the level of thyroid stimulating hormone remains the primary goal of therapy for patients with hypothyroidism." - when will someone come out and say that the primary goal should be optimization of actual thyroid hormones!), but then it was sponsored by a manufacturer of levo, so ...
Yup, due to 'Newcastle' - my home town, my university - once heralded as a forerunner in matters of the thyroid [late 1800's and 1970's] - I now carry the burden of having been un-diagnosed in 2015. I only went to this guy because he 'advertised' himself on the Euro/ Endo stage as acknowledging people in my circumstances... hmm. I had been treated since Feb 2010, then with GP and NHS providing Armour Thryoid + free prescriptions coming with that accepted diagnosis of Dr S. Bear in mind that two endo Prof's, 2008 + 2009, declared me not hypothyroid, plus the GP clearly saw the difference Armour made to me. For that I am appreciative... but see below at *.
Once diagnosed and treated NO thyroid test any endo ran would have made a jot of difference; feasibly my symptoms and new, additional problems, were all that could be looked at. I was disregarded out out hand, other than for him asking me 'Do you belong to any professional body"? It was clear why he did that!
As for disbelief... incredulity... very same un_diagnosing endo also ran a test - Beta-crosslaps [re bones] without telling me and thereafter failing to provide results [as I'd requested in advance ALL bloods. Thyroid results came back without ranges, no beta-crosslaps]. Having finally prized this 'Report' out of GP's hands - some considerable time later - the 'range' for that depicts me in quite grave danger... e.g. serious illnesses where I'd be dead by now. One was Paget's Disease [he'd been told prior to consultation, that my P G-father died of it]. He was clearly trying to 'prove his little point' re T3 and bones. Once he mentioned bones, I had GP do a Dexa scan = fine. Clearly I'd stolen his thunder and it couldn't have been thyrotoxicosis because I was freezing cold/slowed right down/punch-drunk, with no hyper signs at all only severe hypothyroidism. Once I saw this dreadful report - he didn't even follow the protocol for running it - I asked him to re-run the test, only to have the the 'Complaint's Dept' call the very next day, to which I said, "It's not a complaint, I'm ill not dim".
* Now, 4 years later and even more ill, I am 'reported' to any other department [heart, fatigue, ENT... musculo-skeletal, can't even remember now], as 'self-diagnosed' and 'self-medicating' - these are downright lies [not a word I use, since 'truth' is not a concept I absolutely accept]. You'll be able to imagine what those comments conjour up when I try to get healthcare anywhere!? My time now, when I'm well enough, is spent back-tracking then for the next app't having to write to the department in an attempt to correct mendacity - of course that engenders the same impression - so, once it goes wrong... I need healthcare, not having to take on these B'ds at every turn. BEWARE! Careful about telling that you 'self-treat'. xox
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