Squirrel, it’s bloody dangerous. I’m arguing that it should be investigated, not that everyone who feels tired should start glugging hormones.
Yes. And I’m not planning to, you know, convince anyone to do this; however I myself would have liked to know that this is a possibility, if I had this condition. What to do about this is a different matter entirely. I guess you can’t easily obtain the relevant medications without consulting a doctor in any case.
I agree. We should not spread this to potential patients. I think we should first talk about it with medical professions people, in order to raise consciousness of this hypothesis.
I’ve been trying to ‘go through channels’ for about three months now. I’ve sent crank emails to every correspondence address on every endocrinology paper I’ve read that’s expressed the slightest sympathy with the ‘the patients might be right, you know’ position, and they don’t reply.
I know a fair number of scientists and some doctors and medical students, and some of them think this is worth a look, and some of them know eminent medical researchers. There’s just a wall of silence. I can’t explain it. I know some of the medical researchers have read ‘A medical mystery’, and one prominent endocrinologist is reported to have said ‘The narrative is broadly correct, but he seems obsessed with the sensitivity of the TSH test. I don’t think that’s the problem’. I can’t even work out what that means.
And I’ve promised (my word is good, and known to be good by my friends) that if there are already people taking this seriously and they just don’t want to panic people, or if there are public safety concerns that I don’t know about then I’ll shut the fuck up. And in fact I’m keeping most of the scary conclusions to myself anyway. But the friends of friends won’t meet me, or even reply to e-mails.
I think it’s generally agreed that a coffee with me is not an unbearable experience, and I can change my mind about major things in five minutes flat. I really wonder what the hell is going on. If this turns out to be true, the first person to publish proof is going to get most of the credit for it. You’d think they’d be avid to talk.
There is one doctor who seems to have observed everything I’ve predicted in his clinical practice, and who still doesn’t take the underlying idea seriously. I just don’t get it.
And another who says ‘these concerns have been around for a long time, but if you ask endocrinologists for help they just say “The blood tests are normal, therefore it’s not an endocrinological problem”’, and obviously thinks that they’re useless, but who won’t even listen to my ideas or what I’ve dug up.
I can only think that they’ve been listening to people moaning about thyroids for so long now (must be nearly forty years) that they’ve just developed some sort of memetic immune defence.
But I’m pretty sure that if I’d gone completely mad, and started writing to famous mathematicians telling them that I’d found a brilliant new way to square the circle, then at least one of them would have been kind enough to send a form letter saying ‘You can’t, and the proof is here [link].’ Which is all I’m looking for.
So now I’m thinking, “Well, the best thing is to find some way to draw public attention to it”. But if you can do it the right way, then go ahead. Cos I can’t, and I’m in the position of maximum privilege that gets listened to.
The weird thing is, the public have heard all this before. The internet is black with it. I was originally worried that I’d cause a panic by talking about it in public at all, and scared to post even on Less Wrong. But apparently this idea is already widespread in various forms. And it’s never been looked at by anyone except the quacks and homeopaths, who all buy it. Or if it has, there’s no record of it in the literature that I can find, apart from the papers I’ve referenced here.
People keep sending things to ‘Medical Hypotheses’, and they keep printing them. But I don’t like mentioning that, because people say ‘Hang on, isn’t that the one that publishes AIDS denialism papers?’.
some of them think this is worth a look, and some of them know eminent medical researchers. There’s just a wall of silence. I can’t explain it.
What would “taking a look” entail? Taking it seriously means a large study which means applying for grants, going through ethics boards, devoting a lot of time and energy to it, etc. That’s a rather big project and, presumably, serious people would require good reasons to commit to such a project.
Other than a full-blown study, what else? Can doctors just try to give things like dessicated thyroid to their patients? Well, it’s been done and the results, which you are well aware of, are inconclusive. Besides, I don’t think the NHS would look kindly on such “experiments” which I’m pretty sure go outside of the accepted guidelines.
Basically I think there is a large barrier to entry and no one is motivated enough to bring a wrecking ball.
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’.
Can doctors just try to give things like dessicated thyroid to their patients?
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!
Well, it’s been done and the results, as you are well aware of, are inconclusive.
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?
The main reason why desiccated pig thyroid (DPT) has been disliked by the medical community is complicated. It starts with one complaint that is true—there were large variability issues in DPT products even as late as the 1970s.
When levothyroxine came onto the scene it promised three things: consistency, uniformity, and safety. No longer would patients have to deal with potentially dangerous levels of T3 in treating hypothyroidism. No longer would individuals become hyperthyroid due to supraphysiologic amounts of T3 from DPT. That it continued to have its own consistency, uniformity, and reliability issues didn’t really bother many doctors. It finally managed to live up to its promise when the FDA put its foot down in the late ’00s and mandated much tighter controls.
But during that time, DPT also got its act together, and has much tighter manufacturing standards. The stability and uniformity is much better than it had been before.
“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.
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.
I’m confused. Aren’t these clinical symptoms of hypothyroidism?
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.
Oh, I’d like to say that none of that makes hypothyroidism the sole cause of CFS. There appears to be raised heart rate in CFS, which seems strange if it’s primarily a thyroid underregulation problem.
But ‘diagnose hypothyroidism by symptoms, ignore TSH, treat with any sodding thyroid hormone you like’, seems to be straightforwardly the right thing to do, and uncontroversial amongst people who’ve tried it. All the debate is about what the best combination of T4/T3 is. But they all agree that they all work fairly well.
And at least some ‘hypothyroid symptoms, normal TSH’ people are going to end up diagnosed CFS, FMS, IBS, MDD, etc, etc, etc....
Yes. And I’m not planning to, you know, convince anyone to do this; however I myself would have liked to know that this is a possibility, if I had this condition. What to do about this is a different matter entirely. I guess you can’t easily obtain the relevant medications without consulting a doctor in any case.
I agree. We should not spread this to potential patients. I think we should first talk about it with medical professions people, in order to raise consciousness of this hypothesis.
I’ve been trying to ‘go through channels’ for about three months now. I’ve sent crank emails to every correspondence address on every endocrinology paper I’ve read that’s expressed the slightest sympathy with the ‘the patients might be right, you know’ position, and they don’t reply.
I know a fair number of scientists and some doctors and medical students, and some of them think this is worth a look, and some of them know eminent medical researchers. There’s just a wall of silence. I can’t explain it. I know some of the medical researchers have read ‘A medical mystery’, and one prominent endocrinologist is reported to have said ‘The narrative is broadly correct, but he seems obsessed with the sensitivity of the TSH test. I don’t think that’s the problem’. I can’t even work out what that means.
And I’ve promised (my word is good, and known to be good by my friends) that if there are already people taking this seriously and they just don’t want to panic people, or if there are public safety concerns that I don’t know about then I’ll shut the fuck up. And in fact I’m keeping most of the scary conclusions to myself anyway. But the friends of friends won’t meet me, or even reply to e-mails.
I think it’s generally agreed that a coffee with me is not an unbearable experience, and I can change my mind about major things in five minutes flat. I really wonder what the hell is going on. If this turns out to be true, the first person to publish proof is going to get most of the credit for it. You’d think they’d be avid to talk.
There is one doctor who seems to have observed everything I’ve predicted in his clinical practice, and who still doesn’t take the underlying idea seriously. I just don’t get it.
And another who says ‘these concerns have been around for a long time, but if you ask endocrinologists for help they just say “The blood tests are normal, therefore it’s not an endocrinological problem”’, and obviously thinks that they’re useless, but who won’t even listen to my ideas or what I’ve dug up.
I can only think that they’ve been listening to people moaning about thyroids for so long now (must be nearly forty years) that they’ve just developed some sort of memetic immune defence.
But I’m pretty sure that if I’d gone completely mad, and started writing to famous mathematicians telling them that I’d found a brilliant new way to square the circle, then at least one of them would have been kind enough to send a form letter saying ‘You can’t, and the proof is here [link].’ Which is all I’m looking for.
So now I’m thinking, “Well, the best thing is to find some way to draw public attention to it”. But if you can do it the right way, then go ahead. Cos I can’t, and I’m in the position of maximum privilege that gets listened to.
The weird thing is, the public have heard all this before. The internet is black with it. I was originally worried that I’d cause a panic by talking about it in public at all, and scared to post even on Less Wrong. But apparently this idea is already widespread in various forms. And it’s never been looked at by anyone except the quacks and homeopaths, who all buy it. Or if it has, there’s no record of it in the literature that I can find, apart from the papers I’ve referenced here.
People keep sending things to ‘Medical Hypotheses’, and they keep printing them. But I don’t like mentioning that, because people say ‘Hang on, isn’t that the one that publishes AIDS denialism papers?’.
Something somewhere is very badly wrong.
What would “taking a look” entail? Taking it seriously means a large study which means applying for grants, going through ethics boards, devoting a lot of time and energy to it, etc. That’s a rather big project and, presumably, serious people would require good reasons to commit to such a project.
Other than a full-blown study, what else? Can doctors just try to give things like dessicated thyroid to their patients? Well, it’s been done and the results, which you are well aware of, are inconclusive. Besides, I don’t think the NHS would look kindly on such “experiments” which I’m pretty sure go outside of the accepted guidelines.
Basically I think there is a large barrier to entry and no one is motivated enough to bring a wrecking ball.
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?
The main reason why desiccated pig thyroid (DPT) has been disliked by the medical community is complicated. It starts with one complaint that is true—there were large variability issues in DPT products even as late as the 1970s.
When levothyroxine came onto the scene it promised three things: consistency, uniformity, and safety. No longer would patients have to deal with potentially dangerous levels of T3 in treating hypothyroidism. No longer would individuals become hyperthyroid due to supraphysiologic amounts of T3 from DPT. That it continued to have its own consistency, uniformity, and reliability issues didn’t really bother many doctors. It finally managed to live up to its promise when the FDA put its foot down in the late ’00s and mandated much tighter controls.
But during that time, DPT also got its act together, and has much tighter manufacturing standards. The stability and uniformity is much better than it had been before.
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.
Oh, I’d like to say that none of that makes hypothyroidism the sole cause of CFS. There appears to be raised heart rate in CFS, which seems strange if it’s primarily a thyroid underregulation problem.
But ‘diagnose hypothyroidism by symptoms, ignore TSH, treat with any sodding thyroid hormone you like’, seems to be straightforwardly the right thing to do, and uncontroversial amongst people who’ve tried it. All the debate is about what the best combination of T4/T3 is. But they all agree that they all work fairly well.
And at least some ‘hypothyroid symptoms, normal TSH’ people are going to end up diagnosed CFS, FMS, IBS, MDD, etc, etc, etc....