This paper makes some valid points. In particular, the reverse T3 part is possibly closer to what many here consider accurate than the hype surrounding the claims.
And I do not feel I know enough to comment on some of the issues/points made.
Pseudo-endocrine Disorders: Recognition, Management, and Action
“Pseudo-endocrine disorders” refer to proposed conditions that have never been scientifically proven to exist but, due to widespread misinformation available on the internet and other media, are relatively commonly diagnosed and treated with equally unproven and sometimes dangerous treatments. Adrenal fatigue is a nonexistent condition that supposedly results from adrenal exhaustion and atrophy due to chronic stress and has been promoted as a potential explanation for a variety of symptoms. Testing consists of nonvalidated online surveys and salivary cortisol profiles while treatment is not evidence-based at best and can be dangerous. Wilson's syndrome and reverse T3 syndrome are also nonexistent conditions that supposedly result from impaired T4 to T3 conversion and competition of excess reverse T3 with T3 for T3 receptors. Testing involves measurement of axillary temperature and treatment consists of T3 therapy, often at very high and dangerous doses. Hypogonadism (“low T”) is frequently diagnosed in “men's health” clinics and other venues without actual hormone testing or further evaluation and is often treated with supraphysiologic testosterone therapy that suppresses endogenous gonadal testosterone and sperm production, leads to a lifelong need for testosterone therapy, and may have numerous other harmful effects. Low-dose naltrexone (LDN) therapy has been proposed as a treatment for multiple disorders including autoimmune conditions and other disorders resulting from aberrant immune mechanisms, but there is no valid evidence that LDN has any benefits. Management of patients with pseudo-endocrine disorders must involve careful listening, patient education, healthy lifestyle measures, and honesty, encouragement, and compassion.
adrenal fatigue, Wilson's syndrome, reverse T3 syndrome, low-dose naltrexone
First response is that I feel like I’ve just been put through a mis-information machine… to say confidently that something is a nonexistent condition… and to say that something has “no valid evidence” as if to say so makes it so, when even I know my memory can recall reading at least “some” valid evidence… Of course the truth is somewhere in between but that article is so certain and therefore very gaslight-y, supported by its incredibly condescending conclusion.
When I read the conclusion:
Management of patients with pseudo-endocrine disorders must involve careful listening, patient education, healthy lifestyle measures, and honesty, encouragement, and compassion.
I would revise as follows:
Management of DOCTORS who believe your endocrine disorders are “pseudo” - must involve careful listening, doctor education and an open mind, honesty, encouragement of additional research and trials, and compassion so as not damage their delicate egos.
How can a patient have a non-existent condition? Sure, I can see that people think they have a condition which is not believed to exist. But that conclusion is directed straight at "patients with pseudo-endocrine disorders". Which is a state that simply cannot exist by their own definition!
I am not very scientific but since I have been on this thyroid journey and observed my family in that light, I am quite keen on the idea of depression and other 'mental illnesses' etc being linked to hormone imbalances in some way for many people. This would mean that for many it would be a physical condition rather than a mental one. For instance, when my cortisol levels were very low, I was very light, noise and stress intolerant and felt very 'raw' in my brain.
Shoot you? Who on Earth would then help us discover so much information? No that won’t be happening.
One thing I noticed very wrong with the ‘order’ of this scenario, is that I reckon most people go to traditional medics in the first place, find that they get nowhere and then look elsewhere.
Doctors have already shunned or shamed the patient. This is a sorry explanation for their own dire disservice to the patient; no matter if the essence of the treatments to which they refer are indeed duds.
I saw this somewhere the other day, (maybe on twitter?), heartily endorsed by a lot of endos basically saying 'this! patients making things up with the help of the internet'. It does indeed feel very gas-lighty, but specifically, in researching low cortisol, I've discovered the NHS research enthusing over saliva cortisol tests and how useful they are. I mean, the current 'standard' recommended diet was introduced without trials or 'proper' RCTs or evidence, as are other treatments, and that doesn't seem to bother the NHS. The language is indeed a bit odd.
Thinking more about this ‘research’ I agree “gaslighty” is a good description. It’s tied up in a bow about honour and respect and ‘do as I do’ crap. It’s all actually really insulting and I even think lots of doctors will be pissed off by the “holier than thou tone”. Unfortunately I don’t think doctors being insulted by another doctor will work in our favour either. Another excuse to put a nail in our coffins.
Crikey managed a record number of homilies in that short reply!
The article was interesting, thank you. I note that it was dated 2019 and hoped to have developed an at home saliva test by 3 years time. We are now 5 years on from 2019, so my next task is to see if I can find any research indicating what the result was.
This has so many resonances with patients reporting residual symptoms when on T4 treatment despite normal blood test results. [We now know that much of the research regarding T3 treatment is flawed as it dictated T3 dosing by keeping normal TSH levels, despite research showing T3 has a more suppressive effect on TSH levels.]
It's not so long ago that poor T4 to T3 conversion was viewed in the same light (and still is by many media and researchers).
I'm a bit perplexed (pseudo pi$$d off ?) as to why he feels the need to include hashimoto's encephalopathy in his list of pseudo endocrine disorders ?..... just because it's got a new name, that doesn't make it 'pseudo' anything ,and he says himself "it is more accurately referred to as SREAT steroid responsive encephalopathy associated with autoimmune thyroid disease".
so is it just the term 'Hashimoto's' that he thinks is pseudo ?
would he include Pernicious Anaemia in a list of pseudo conditions just cos it's now called Autoimmune Gastritis ?
yes , that sounds excellent......... i already have one with giant cup cakes singing "we are the elephants" in a room painted with spots ..so they will go well together.
Wilson's syndrome and reverse T3 syndrome are also nonexistent conditions that supposedly result from impaired T4 to T3 conversion and competition of excess reverse T3 with T3 for T3 receptors.
Whenever I read about Wilson's Syndrome I confuse it with Wilson's Disease which definitely does exist.
In my opinion based on my own experience of having a very low temperature for several decades, Wilson's temperature syndrome isn't as phony as suggested by doctors.
I used to have an extremely low body temperature before my thyroid started being treated. There were times before menopause when it was between 94° F and 95° F. I was cold almost all of the time. When I wasn't cold I was sweating like mad. I couldn't win - my temperature control was very poor. But apparently I'm supposed to believe that my very low body temperature had no effect on my health.
Enzymes often only work at certain temperatures. And I've always wondered if my body would work better at a "normal" temperature. My basal temperature these days, now that I'm on thyroid hormones, is roughly 97.6 ° F.
Another thing I consider to be "real" is "adrenal fatigue".
Adrenal Insufficiency (which doctors do "believe in") can be treated but not cured. Adrenal Fatigue on the other hand is curable (in my opinion) assuming that the adrenals are functioning poorly because of low vitamins, low minerals, and low thyroid hormones, and each of those problems can be fixed. I have wondered if low sex hormones have an impact too, but they aren't something I know much about.
competition of excess reverse T3 with T3 for T3 receptors
It was diogenes who told the forum that this had been definitively debunked. Reverse T3 and ordinary T3 each have their own receptors and they don't compete for receptors.
I have long felt that the naming of "adrenal fatigue" is a big problem.
Something goes on with the adrenals when severely hypothyroid but I don't remember ever reading a good description and explanation. A lot is obscured by very woolly language.
Perhaps we should re name the term Adrenal Fatigue and call it 'HPA axis disorder' (Hypothalamic-pituitary-adrenal axis disorder.) Which is a recognised neuro-endocrine disfunction.
All the arguments around it are often a matter of semantics....which endo's can use to mis-direct patients when they get a bit too near the truth!
There has been a slow movement to rename disorders and, as you suggest, HPA axis disorder seems feasible. They also often subdivide - with classics like Type 1 and Type 2 diabetes mellitus. Which is also fine so long as it is done sensibly.
Afraid "adrenal fatigue" has me imagining a cartoon adrenal gland stretched out on a sofa, yawning and struggling to stay awake.
All I can say is because I'm early on in my thyroid journey I can only comment on the Adrenal side of things. Adrenal Fatigue isn't recognised as a condition in this country and low cortisol should not be measured by salvia samples. If cushings is suspected (high cortisol) then saliva samples can be useful. It's a while since I came across it but it's in the NICE guidelines.
They are however trialling salvia tests for low cortisol but it's a trial in a lab in Sheffield with very different labs and it's in its early stages.
There is some doctors that are suggesting that they can support adrenal function with supplements but it's very dangerous advice and is against the working practices and medical guidance as advised currently by again NICE I think it is.
I suspect that THIS “messenger” will face the firing squad because I don’t think the same way as most others commenting. But I believe there needs to be a balance of opinion. What concerns me is how willing many are to question and criticise fully qualified specialists who follow scientifically authenticated guidelines, yet how indignant they become with any legitimate attempts to debunk non authenticated medical hypotheses. The way I see it is that a serious and legitimate specialist will write peer reviewed theories in medical journals. If something is written as a best seller the motivation is clear. I live in a society where we can get free health treatment under strict scientific guidelines which I believe to be safer than being persuaded into shelling out for theoretical and untested private remedies. It’s nothing new, there have been plenty of such remedies over hundreds of years and generally for commercial gain. They don’t fool me. I have a good understanding with the qualified professionals who treat and advise me, I respect them and it’s a two way street. I will never exchange that guidance for something in a book or online article. Fact checking is essential when our health and well being is at stake so if those unsubstantiated claims can be questioned health care would be safer all round.
I think that some of the replies have indicated acceptance that the reverse T3 story is rightly criticised.
Adrenal fatigue is a big problem because something happens which is not explained by qualified specialists. I hate the term. And definitions seem somewhat flexible. Whatever is made from this book would be small change to some of those who flog supplements and treatments.
Some of those qualified specialists have managed to see liothyronine demonised and nearly banned. (Though there does appear to have been some relaxation of the worst restrictions. Though very much depending on individuals and areas.)
At the same time, some qualified specialists, most obviously at present Professor Antonio Bianco, are clearly explaining why liothyronine might be absolutely essential. With extensive research.
So we have what amounts to patients watching a game of chess. Until that game finishes, and only if it is won by the pro-liothyronine side, many have simply to do without.
I respect your opinion and almost envy you your faith, but for those of us who have worked in the medical world we know that it is governed by the same rules as the rest of life. There are good doctors and bad doctors, good practices and bad practices. Doctors and scientists are human and governed by the same impulses as the rest of the world, and sometimes money and power are king. And science is a fluid thing, often what we think is a good practice, like forcing heart patients to lie in their beds for 6 weeks after a heart attack ( a practice that was prevalent 40 years ago) is replaced by current thinking and making them move, resulting in less deaths due to thrombotic events. It is good to question and aquire knowledge and bear in mind the Internet is also full of medical papers in medical journals that will give you relevant information on your condition.
Yes, there are authenticated scientifically reviewed papers available online. These are beneficial. The type under discussion in the article are not in that category. It’s a free for all, anything goes situation where anyone can make claims. Readers of such things should be discerning and look for valid sources rather than subscribing to ideology that’s trend driven and unsubstantiated.
Whenever research is involved the old adage follow the money applies, there is always vested interests, confirmation bias and usually commercial pressures, who is funding the research. Doctors and scientists are no different to the rest of us. They all have their pet theories and prejudices. Too often they make the facts fit the theory and not the theory match the facts. There is still a lot of dross in the scientific community.
I can understand your point of view on this problem. But I suspect you might be one of those lucky people who have had mostly good treatment from doctors. But throughout my life I've had terrible treatment from doctors and my lack of trust is entirely justified. I've been laughed at, had diagnoses missed for years, been denied treatment for excruciating pain which started in my teens and wasn't treated until I was 55, I've had my records flagged to say that I'm a hypochondriacal drug seeker, I've had internal organs removed during surgery, and my medical records don't even mention it - and to make matters worse those same records say a few years later that those removed organs are still there and perfectly healthy. I had a GI bleed that took three hospitals 3.5 years to find, and even after the cause of the bleed was found and fixed the loss of blood and iron was never fixed - I had to treat my own horrendously low iron and my absorption was so poor it took me years.
I fear the process of dying because I am sure I will be assumed to be drug-seeking and will be left to suffer horrendously. I doubt the cause of my death will be found or even looked for before it is too late to save me - and I suspect it might be deliberate because it will save the NHS money.
I have zero respect for doctors and I can't see how that could ever be changed. These days I only ever go to the doctor if I have something visible wrong with me.
I have not had any negative experiences with qualified professionals. I owe my life and my daughter’s life to them when I suffered from a dangerous complication of pregnancy. That was over 30 years ago and since then nothing else that life threatening has happened to me. However, had my experiences been more negative, I would take it as even more reason not to trust unregulated practitioners. If fully accredited ones aren’t to be trusted why on earth should unaccredited ones be any better. They’re bound to claim to have all the answers, it’s in their own interests. There are thousands of people like me who receive adequate and good treatment from regulated doctors. The safer route is to seek those out.
Given that even getting registered with a GP - and GP in whose catchment area you live - can be very difficult.
Given that getting referred by a GP can be very difficult.
Given that even when referred, consultants can refuse to accept the referral.
Given that there is usually no choice of who you actually see at a consultant appointment.
You are lucky if you get to see a regulated doctor who actually is a specialist in thyroid medicine.
Even if you get to see the best if the regulated doctors for your issue, they might be unable to prescribe what you need.
Paying for private treatment from those self-same regulated doctors can be even worse.
There are untold numbers of charlatans who are not regulated doctors around as well.
I am very pleased you have had good experiences. And many of the UK's doctors do a demanding job with expertise, diligence and achieve amazing results. Unfortunately there are areas of medicine, not just thyroid, where treatment falls way short of what is required.
The fully qualified experts that told me it was the menopause and left me to die of a thyroid disorder? I’ve every faith in them I can assure you with their gold standard crystal ball doctoring . What use is free health care if you are denied the medication you need to recover from your near death experience the white coats took you too?
Those experiences of the health service do not mean that unregulated procedures are the solution. Out of the frying pan into the fire might be relevant. If a fully regulated system can fail, how much worse might unregulated ones be. Your health, your decision but I would certainly not risk further damage by following uncharted courses
At least I’m well again using “unregulated” solutions. If the system were perfect you’d have a fair point but it isn’t. in fact it’s anything but where thyroid care is concerned, it is nothing short of scandalous, no choice, poor diagnosis, poor treatment . pig ignorant doctors& endos spouting utter 💩No doubt there is an industry of charlatans out there just out to make money with no interest in improving anyone’s health and much of it resides in big pharma not just alternative sources
Blimey they've got a nerve! Medics are happy to treat conditions diagnosed by a process of exclusion (i.e. glorified guessing) with drugs that they don't really know how or why they work (i.e. they do in some people so have a go) but choose to get all 'we know best' and 'you can't possibly know better because all you've done is read medical literature 'on line' and can't possibly understand all the big words!!Makes me fume 🤬🤬🤬
Of course, it has always been very clear to modern medicine that if it can not be proven by a test, a medically accepted test that is, than it does not exist. Unfortunately, and I'm coming back to this subject, quite a few of these nonexistent conditions befall females. And since much of the research focuses on males, these conditions continue to be nonexistent. Admittedly it has gotten a tiny bit better as we can see with fibromyalgia and chronic fatigue, etc. now being accepted by many doctors as a real health issue (and not just a mental health issue). And with the arrival of long covid there is a better recognition of the fact that there are, indeed, no tests for everything and conditions exist that can not be explained yet. For those who suffer, it does not matter as long as some solution will be found, wherever it can be found (even if Dr. Placebo finds it). I take both T3 and LDN, both of which have given me great relief. And, quite frankly, I do not give a fig about "valid evidence" in this case.
All the " careful listening, patient education, healthy lifestyle measures, and honesty, encouragement, and compassion" would have sounded pretty good (almost to the point of being nonexistent ), had it not been paired with the "pseudo endocrine disorders". That pretty much made it pompous, condescending and arrogant in my books. Unsurprisingly so, given the tenor of this paper.
Anyone notice this same guy has written a paper next in line to your other post today re: genetics findings? Michael T McDermott “Does combination T4 and T3 make sense? It’s almost like this guy has experienced a personality transplant between writing the two papers.
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), had it not been paired with the "pseudo endocrine disorders". That pretty much made it pompous, condescending and arrogant in my books. Unsurprisingly so, given the tenor of this paper.
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