This post is 5 years old, but I just came across it and it’s sent me off into a rabbit hole of learning about hypothyroidism and the community of rogue practitioners that argue for treating CFS as a thyroid problem.
I’ve had CFS ever since a sinus infection 7 years ago. I’ve mostly given up on finding a solution, but periodically check to see if there’s any new research. Somehow I’d totally missed the thyroid angle, presumably because I’ve been told so many times that my thyroid function (measured by TSH) is normal.
Anyway, @johnlawrenceaspden , if you’re still around, I was wondering if this has turned out to be a durable cure for your own chronic condition.
Here’s a quick summary, edited for brevity, highlights mine, from Science Daily:
Chronic fatigue syndrome possibly explained by lower levels of key thyroid hormones
In hypothyroidism, the body tries to encourage thyroid hormone activity by releasing more TSH—however, this does not happen in patients with chronic fatigue syndrome.
The study’s authors hypothesized that CFS is caused by low activity of thyroid hormones in the absence of thyroidal disease.
Led by Dr. Begoña Ruiz-Núñez at the University Medical Center Groningen, The Netherlands, the researchers compared thyroid function and markers of inflammation between 98 CFS patients and 99 healthy controls. Remarkably, the CFS patients had lower serum levels of T3 and T4, but normal levels of TSH.
CFS patients had a lower urinary iodine status and low-grade inflammation, as well as relatively higher levels of “reverse T3” or rT3. This appeared to be due to a shift in hormone production, where the body preferred to convert T4 to rT3 instead of producing T3. The low T3 levels found in CFS patients, coupled with this switchover to rT3, could mean that T3 levels are severely reduced in tissue.
I don’t know if this study has been replicated; if it has, it would seem to me to be nearly conclusive evidence in favor of your hypothesis.
Thank you, that is most interesting! I wouldn’t call this nearly conclusive evidence, but I would certainly call it further weak evidence to stick on the pile.
My favourite in this line is Gordon Skinner’s paper “Clinical Response to Thyroxine Sodium in Clinically Hypothyroid but Biochemically Euthyroid Patients”.
and stuck everything I found on it, but it’s drawn remarkably little interest. I’ll read this nice new paper and add it there.
But you want to hear about my own experiences, so:
In short, thyroid’s been an almost perfect fix for me ever since I wrote all that, so much so that I’ve lost interest in the subject. I currently take 100ug of T4 and 1 grain of NDT every day, and that’s been fairly stable for around four years now.
My TSH is almost always suppressed (i.e. 0), but my only health problems are sports injuries, and I don’t have any of the symptoms of hyperthyroidism.
I don’t feel *perfectly* well, occasionally I feel a bit more tired than seems reasonable, and sometimes I get depressed for no good reason, but usually fiddling around with the dose seems to sort that out. (too hot, down a bit, too tired/sad, up a bit)
I’ve never gone back to being the bouncy energetic person I was in my thirties, but it’s nothing compared to the living hell of chronic fatigue syndrome. I play tennis three times a week and cycle to my office every day.
However, I do know two or three people who had something CFS-like and bought my arguments and tried thyroid to fix it, and all they got was a feeling of overstimulation, like drinking far too much coffee, and they didn’t think it was worth sticking with. So it clearly won’t fix everybody or even a plurality of CFS people.
That wasn’t my experience, for me it was an excellent instant fix for everything that was wrong with me. Too good to be true.
So my advice is to give it a go. It probably won’t work, but you should be able to tell easily if it’s going to work for you. Be careful though, do the research and try very small doses of NDT at first.
Oops, went to post this paper on my little subreddit and it’s already there! There’s quite a lot of this sort of stuff in the literature, what we need is someone to give it a go in a proper trial and work out whether it really helps. I’m sure that it will work for some people, I’m fairly sure that it won’t work for everyone.
If I take Gordon Skinner seriously, then a good ‘diagnosis of hypothyroidism by symptoms’ should be what would tell you in advance whether it would work or not. But honestly, if you’re careful enough that you can try this on yourself without doing harm, just give it a go. Do tell your doctor what you’re doing. He’ll tell you not to, but he can keep an eye on you while you do it anyway.
This post is 5 years old, but I just came across it and it’s sent me off into a rabbit hole of learning about hypothyroidism and the community of rogue practitioners that argue for treating CFS as a thyroid problem.
I’ve had CFS ever since a sinus infection 7 years ago. I’ve mostly given up on finding a solution, but periodically check to see if there’s any new research. Somehow I’d totally missed the thyroid angle, presumably because I’ve been told so many times that my thyroid function (measured by TSH) is normal.
Anyway, @johnlawrenceaspden , if you’re still around, I was wondering if this has turned out to be a durable cure for your own chronic condition.
I also wanted to point out this 2018 study: Higher Prevalence of “Low T3 Syndrome” in Patients With Chronic Fatigue Syndrome: A Case–Control Study
Here’s a quick summary, edited for brevity, highlights mine, from Science Daily:
I don’t know if this study has been replicated; if it has, it would seem to me to be nearly conclusive evidence in favor of your hypothesis.
Thank you, that is most interesting! I wouldn’t call this nearly conclusive evidence, but I would certainly call it further weak evidence to stick on the pile.
My favourite in this line is Gordon Skinner’s paper “Clinical Response to Thyroxine Sodium in Clinically Hypothyroid but Biochemically Euthyroid Patients”.
https://www.tandfonline.com/doi/abs/10.1080/13590840050043530
I did once make a subreddit devoted to this sort of thing:
https://www.reddit.com/r/thethyroidmadness/
and stuck everything I found on it, but it’s drawn remarkably little interest. I’ll read this nice new paper and add it there.
But you want to hear about my own experiences, so:
In short, thyroid’s been an almost perfect fix for me ever since I
wrote all that, so much so that I’ve lost interest in the subject. I
currently take 100ug of T4 and 1 grain of NDT every day, and that’s
been fairly stable for around four years now.
My TSH is almost always suppressed (i.e. 0), but my only health
problems are sports injuries, and I don’t have any of the symptoms of
hyperthyroidism.
I don’t feel *perfectly* well, occasionally I feel a bit more tired
than seems reasonable, and sometimes I get depressed for no good reason, but usually fiddling around with the dose seems to sort that out. (too hot, down a bit, too tired/sad, up a bit)
I’ve never gone back to being the bouncy energetic person I was in my thirties, but it’s nothing compared to the living hell of chronic fatigue syndrome. I play tennis three times a week and cycle to my office every day.
However, I do know two or three people who had something CFS-like and
bought my arguments and tried thyroid to fix it, and all they got was
a feeling of overstimulation, like drinking far too much coffee, and
they didn’t think it was worth sticking with. So it clearly won’t fix everybody or even a plurality of CFS people.
That wasn’t my experience, for me it was an excellent instant fix for
everything that was wrong with me. Too good to be true.
So my advice is to give it a go. It probably won’t work, but you
should be able to tell easily if it’s going to work for you. Be
careful though, do the research and try very small doses of NDT at
first.
Oops, went to post this paper on my little subreddit and it’s already there! There’s quite a lot of this sort of stuff in the literature, what we need is someone to give it a go in a proper trial and work out whether it really helps. I’m sure that it will work for some people, I’m fairly sure that it won’t work for everyone.
If I take Gordon Skinner seriously, then a good ‘diagnosis of hypothyroidism by symptoms’ should be what would tell you in advance whether it would work or not. But honestly, if you’re careful enough that you can try this on yourself without doing harm, just give it a go. Do tell your doctor what you’re doing. He’ll tell you not to, but he can keep an eye on you while you do it anyway.