This is potentially a breakthrough paper, published in Frontiers in Endocrinology in March 2018. Low T3 Syndrome, also known as Non-Thyroid Illness Syndrome (NTIS), is usually associated with acute illness, and presented in those who are hospitalised. The prevailing advice is not to treat with thyroid hormones as the TFTs will return to normal when the patient recovers from the short-term ill-health.
However, this paper (see link below) asserts that a sub-group of those with CFS have low FT3 as a fundamental part of their chronic illness. Here is the conclusion and suggested way forward:
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The most remarkable finding in this CFS case–control study was a higher prevalence of the “low T3 syndrome,” attributable to a subgroup of CFS patients. Chronic low-grade metabolic inflammation was not convincingly noted. Low circulating T3 may reflect more severely depressed tissue T3 levels. The “low T3 syndrome” might be in line with recent metabolomic studies pointing at a hypometabolic state. It also resembles a mild form of NTIS and the low T3 syndrome experienced by a subgroup of hypothyroid patients with T4 monotherapy. Our study needs confirmation and extension by others. If confirmed, trials with, e.g., T3 and iodide supplements might be indicated.
This is of particular personal interest as ever since I've been tested for FT3, the results have shown low levels (as referenced in my profile above), either close to deficiency or within the lowest quartile (which, in other research findings, comes under the definition of Low T3 Syndrome). In this particular paper, the definition is sub-range FT3.
The crucial questions are:
Do I go to my GP with all my TFT results and this paper in hand to ask for an endo referral (given that T3 medication is now only prescribed by an endo), bearing in mind that the paper calls for further research and trials?
Can I ask for a referral to a specific endo (who also specialises in central hypothyroidism - but that's another story highlighted in other posts)?
I know that many on the forum would advise me to go ahead and source T3 directly (despite the problems associated with obtaining it) and give it a go, but I'm a little wary of doing this without medical supervision (I could discuss with the naturopath I have been seeing).
On the other hand, there are recent research papers linking low FT3 with cardio problems and even Alzheimer's (and given that my mother and maternal aunt both had early onset Alzheimers from their late 50s/early 60s and - I would assert - hypothyroid symptoms but undiagnosed, that really is scary). So, if I don't get anywhere with the medical profession/naturopath I may need to go it alone.
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AmandaK
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One of the most important words you quote is "subgroup".
It seems likely to me that what has been bundled up as CFS/ME (or whatever precise naming) is actually more than one thing. In much the same way as many other syndromes and even diseases have been found to be two or more different things.
Any research which looks at a generic group of CFS/ME patients might be seeing several different things - and hence any trials which apply to only a subgroup, especially if of only moderate effect, might get missed.
However, the idea that GET (Graded Exercise Therapy) can that treat low T3 is tragically wrong.
Yes, GET is a get-out! The paper doesn't mention GET (as far as I can see) but recognises that ME/CFS has a physical origin, with emotional/psychological associations/consequences.
It's the first mainstream paper I've read that suggests T3 as a potential treatment. Those who have been forced outside of the NHS system or who choose to work outside of it have been positing this kind of intervention for some time, as we know.
I tried to raise this specific research with my GP when I last saw him to discuss my thyroid blood tests - he said that that would require him to accept that there were different subgroups of ME which he couldn't countenance and said he would also need to know what caused the underlying problem before he could consider treating it. It took every ounce of what will power I have left not to bang my head on his desk in some sort of Basil Fawlty type impotent rage. Just saying
That's so frustrating - not surprised you're feeling the way you do. Even if the GP finds it difficult to accept the sub-group theory, he shouldn't dismiss you like this. Can you ask for a referral to an endocrinologist who might take this more seriously? Not that an endo would necessarily have a different viewpoint but given that thyroid dysfunction is a part of ME/CFS there should be some further investigation.
Even Dr M states that ME/CFS is a conglomerate of underlying causes, including thyroid anomalies (including central hypothyroidism) that need attention.
Thanks Amanda. I will try to arrange to see an endo privately after I get my blood test results, but from the recent reading I have been doing I am almost fairly certain that if Hashimotos shows up, I could have had it for over 18 years undiagnosed and untreated, and am almost also fairly certain that I have estrogen dominance which puts you in 'vicious circle' territory of causing the hashis/hypo which in turn makes the ED worse or causes it in the first place. I don't see even a very good endo picking that up unprompted never mind offering any strategy to clear the excess estgrogen. Again I tried to raise this with my GP and he said it was "beyond him". He really is an idiot. Oh for a fairy godmother who could wave a magic wand!!!!
This article has been posted a few times on the forum before, and there's also a more magazine-type article that summarizes it. Some have had loads of discussion. I had a search to see if I could find any, and here are a few:
I was a little disappointed that the actual numbers of CFS patients who had low T3 is not that large, and particularly the difference between the CFS group and the control group is quite small. Based on the work of doctors like Dr Skinner and Dr Lowe who treated patients with CFS, I expected numbers to be higher.
Thank you SilverAvocado, I realised after I had posted this that diogenes and others had also flagged it up! I think I was in the throes of flu, with tonsillitis in hot pursuit, this time last year, which is probably why I missed it. I agree with your reservations about some of the results, though perhaps a larger cohort might yield stronger results, which is why they are calling for more research.
I too was surprised by the comparison with controls re: FT3 levels, and wondered if the measurements in Table 1 for the controls were actually correct.
Yes I agree, it's more striking that the controls are such a high number!
Have you come across Gordon Skinner and John Lowe, the doctors I mentioned above. They both treated CFS/ME and fibromyalgia sufferers with thyroid hormone with good success. It's good news that research is being done that follows up on their legacy, as they are both hugely popular in the patient community.
Many of us, including me, are very influenced by them in our own treatment regime, so I don't feel it's possible to dismiss their suggestion that these illnesses are perhaps forms of thyroid illness.
Sorry, I meant to say that I was aware of Drs Skinner and Lowe and their work. I've just watched the Anthony Toft video uploaded on to the forum the other day - very good - just wish he could have more sway on mainstream medicine. Although he doesn't mention ME, I'm sure he would have something to say if he saw ME patient's TFTs. Or perhaps he has said something at some point?
Anthony Toft was very influential in the 90s. He's been president of the BTA and the Royal College of Physicians. I think he's been retired for 10 years, though.
Recently he has really started to soften his position. His previous work was a bit more hard-line on TSH, using T4 monotherapy, having numbers inside the range, etc. It sounds like he's now a bit shocked that the words of himself and colleagues were taken so literally and so far. Probably they were all assuming doctors would use their own knowledge and common sense and make exceptions whenever individual patient's symptoms and history justified it!
"I was a little disappointed that the actual numbers of CFS patients who had low T3 is not that large"
Many people with CFS do not have low T3. They have normal or even high Free T3 but have thyroid hormone resistance, meaning that they need even higher Free T3 levels to feel well.
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Low T3 syndrome in thyroid therapy: THREE studies
