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!
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 researcg 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.
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 🤬🤬🤬
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