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Lumifer comments on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? - Less Wrong Discussion
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Well, talking about it, admitting doubt, those sorts of things would be a start.
Before this became something routinely done on the NHS, it would need cast-iron proof sufficient to convince NICE, and I approve of that wholeheartedly. But there are a lot of smaller steps between 'suspicion' and 'certainty'.
They used to hand it out routinely, back in the days when hypothyroidism was diagnosed by symptoms (up to ~1965), and everyone thought it was as good as medicine got. There seems to have been huge pressure to stop doing that, including striking people off, and I wonder what evidence was used to support those processes. If there is any, that's what I'm looking for.
Now, I think you might be in serious trouble for not following the guidelines. The guidelines for CFS say: 'don't use thyroxine'. But they don't give a reason or a reference. It's mad.
In America, apparently, doctors are much freer to try things, and some of them do, in full knowledge that endocrinologists disapprove, and it works.
But actually, desiccated thyroid is also available as a 'food supplement', and you don't need a prescription for it in England or America, so chiropractors and osteopaths and homeopaths and naturopaths and mad people on the internet and the like are free to tell people to take it. And they do. And then they write books about it. Just Google!
Actually, I'm not well aware of that. I really haven't found anyone saying 'We tried this on people with hypothyroid symptoms, and it just made them hyperthyroid, as you'd expect." Everyone who's tried it seems to think it works a treat. I'd love to see counter-evidence if you can find any.
The worst anyone has to say is: "It works most of the time, but often we find that there's something adrenal going on as well, and in those people we have to fix both".
The question answered inconclusively was "If we hand this out to fat, tired people with dry skin, does it work?". And the answer to that is: "On average they can't tell the difference between that and placebo.
But they also proved that healthy people can tell the difference on average, and they don't like it. Presumably because it gives them hyperthyroid symptoms, which aren't very nice.
Everyone who's ever tried fixing the clinical diagnosis of hypothyroidism with any kind of thyroid therapy either seems to think it works, or hasn't written about it on the internet or in the medical literature.
That's a big claim. I'm making it in bold on Less Wrong. I expect someone to turn up some evidence against it. I would love to see that evidence.
I find this bewildering. I thought that the problem would be complicated and difficult.
And at the moment I'm just staring in disbelief. What the hell is going on?
I'm confused. Aren't these clinical symptoms of hypothyroidism?
Besides, "works / doesn't work" seems like a too crude approach. There is a large middle zone of "works for some people some of the time" and there you have roll up your sleeves and get into the messy details which might still not give you enough information to be able to predict for which people at which time your treatment will work (or not).
The "theoretically correct" approach would be, I think, to do a deep dive into biochemistry and figure out all the links in the mechanism connecting the T levels in the blood with the activity of the mitochondria. Once you do that, figuring out which link is broken in a particular patient subset shouldn't be too hard. But the initial research, mapping out the chain of effects, looks daunting.
Ah. They are clinical symptoms of hypothyroidism. But they are also symptoms of all sorts of other things. In fact they are symptoms that occur in people who have nothing wrong with them at all.
To diagnose it by clinical symptoms you have to be much more careful than that! See e.g. Billewicz paper.
More specific symptoms were apparently things like ankle tendon reflex, and cholesterol levels, but you need to be really careful. The disease was known as 'the great imitator'. It's easy to confuse with other things, and diagnosing it was really difficult and a job for trained professionals.
I got the impression that if they had strong suspicions, they'd just try thyroid hormones and see if they worked.