FriendlyBuffalo comments on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? - Less Wrong

7 Post author: johnlawrenceaspden 10 April 2016 08:21PM

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Comment author: SquirrelInHell 12 April 2016 03:14:31AM 2 points [-]

I think it's now urgent to bring this to the attention of the medical profession and the sufferers' groups. Has anyone got any ideas how to do that?

At least posting this stuff here is a start, and thank you for doing this. I do not have this problem myself, but I saw the pattern often enough in others that I have independently (of any medical knowledge or opinions of other people) developed this reaction:

someone has chronically low energy / mood -> check if they have obvious problems with diet/sleep/exercise -> if not, suspect thyroid-related deregulation

This is in no way accurate science... but it makes my prior for your hypothesis pretty high, and I am inclined to accept it with high confidence, despite the fact that it could look unfounded or even dangerous to some.

I am going to mention this to the people I know, and judging by how common this type of condition is I expect I'm going to reach at least a few of those that could be helped by the knowledge, even if by pure chance.

Comment author: johnlawrenceaspden 12 April 2016 08:46:51PM *  2 points [-]

Squirrel, it's bloody dangerous. I'm arguing that it should be investigated, not that everyone who feels tired should start glugging hormones.

But it's not unfounded. I've found loads of anecdotal and circumstantial evidence, and very little against (hot daytime fibro-turks is the most surprising thing, and the alternative people seem to think there's often also adrenal issues, but usually secondary). And now two studies from the 'proper' literature.

And I'm fairly sure that endocrinology has never bothered its pretty little head about type II versions, or the accuracy of its wretched TSH test, despite the example of diabetes staring it in the face.

I'm as sure as I can be without formal trial (so maybe about 25% confident?). But I'm now certain that the lack of investigation and of formal trials is inexcusable negligence. J' totally accuse.

Comment author: FriendlyBuffalo 20 May 2016 07:02:36AM 2 points [-]

The TSH test is actually very accurate. Third generation TSH assays are able to detect 0.02 mIU/L or less.

The problem is the way TSH testing levels are used without regard for the actual thyroid hormone levels. The relationship between TSH, T4, and T3 is much more complicated than it seems.

A good explanation of the latest research into it is here: https://www.researchgate.net/publication/263321383. The title of the paper is "Homeostatic equilibria between free thyroid hormones and pituitary thyrotropin are modulated by various influences including age, body mass index and treatment."

Comment author: johnlawrenceaspden 20 May 2016 10:37:11PM *  1 point [-]

Hi FriendlyBuffalo, welcome to Less Wrong!

I've got no problem with the TSH test as a test for TSH. It's really good for that, and I seriously admire its cleverness and accuracy.

In fact it probably is a good test for primary gland failure. I can't see how the gland itself could go seriously wrong without driving TSH into the stratosphere.

What I hate is the idea that TSH normal <=> 'Thyroid Symptoms, improve when treated with thyroid hormones'. I think there are other dysfunctions going on. The very idea of assessing the state of a system that complicated by measuring one variable (or even three) is ridiculous.

I'm pretty much 'clear clinical picture => therapeutic trial, and sod the blood tests' at the moment, as I think Gordon Skinner was. Of course the problem with that is you end up endorsing leeches and aromatherapy that way. I do have a lot of sympathy for basal metabolic rate, and for waking temperature as a proxy for that.

I think we both agree that some CFS/FMS is just thyroid dysfunction, and will improve with various combinations of thyroid hormones.

The only remaining question for me now is 'Is all of CFS/FMS thyroid related, or just a significant portion of it'?

Lowe reckoned that it was 1/4 primary that had been missed, 1/2 central that there's no test for, and 1/4 the mysterious resistance that he had to overwhelm with high doses of TSH. I see no reason currently to doubt his word, and I'm pretty sure that his work has saved my life (I wouldn't have put up with CFS for much longer. It was awful, and there's no way I'd have found out it was thyroid without Lowe.) So I want to dig into his ideas until I can convince myself that they're either true or false.

If they're false that's really strange. There are now two different diseases, which came into being in the 1970s, which look exactly the same as hypothyroidism, only one of them is, and one of them isn't. I have real trouble with that on Occam's razor grounds.

And that's assuming FMS/CFS/MDD are the same thing. If not then there are three new diseases and some misdiagnosed/mistreated thyroid stuff all pretending to be each other.

I'm really really busy at the moment. I'm so sorry. I've been looking for someone who knows more about this than me for months, and now you show up willing to talk and I've got urgent other things to do. But let us resume discussion at a later date. I've written quite a lot about it here as the idea developed, feel free to debunk it all in absentia mea. I'll come back to all this soon, I'm absolutely sure. I'm obsessed.

I've printed off that paper, it looks really interesting. I'm going to try very very hard not to read it instead of doing the thing I'm supposed to be doing. Thank you very much, and hope to resume discussion soon.