Comment by johnlawrenceaspden on Popular religions suggest extrapolated volition is non-existence and wireheading · 2018-02-17T19:54:32.393Z · score: 0 (0 votes) · LW · GW

I'm not sure if this is insightful enough to share here, but I'll try anyway.

It sure is. Nice to see someone post something thought-provoking.

Comment by johnlawrenceaspden on Popular religions suggest extrapolated volition is non-existence and wireheading · 2018-02-17T19:48:27.318Z · score: 0 (0 votes) · LW · GW

I think my personal extrapolated volition is wireheading, and I'm definitely in the "Ooh science, what fun" camp.

But maybe I'm not very good at extrapolating, and an AI could come up with something better. It would, for instance, be great to be in a permanent state of bliss whilst actually acting in the world. Or in some private sandbox world occupied by myself and a few hundred friends.

I can't see how those possibilities would feel any different to me from a good wireheading though. And maybe the AI is trying to conserve resources.

Comment by johnlawrenceaspden on Fact Posts: How and Why · 2017-04-20T21:20:18.907Z · score: 1 (1 votes) · LW · GW

"Asimov on Chemistry" was a childhood favourite of mine.

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-05-20T22:37:11.182Z · score: 1 (1 votes) · LW · GW

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.

Comment by johnlawrenceaspden on A Medical Mystery: Thyroid Hormones, Chronic Fatigue and Fibromyalgia · 2016-05-20T22:13:01.234Z · score: 0 (0 votes) · LW · GW

That's what I was expecting, but 2.5 isn't suppressed, it's actually quite high compared to the average for healthy people, (or at least normal, depending on what you think normal is). And roughly the same as it was at the start of all this. And both the free hormones look low. You'd think adding a fair bit of thyroid to a healthy system would have bumped up the free hormones and maybe lowered TSH to somewhere like the hyperthyroid range.

What's really weird is that I've tripled the dose of NDT since the last time I had blood drawn, and my TSH has gone up slightly in response. I thought I'd be seriously suppressing my own system by now.

It's possible that I've just developed a primary gland failure, but that's weird because there was no sign of it when I first showed severe symptoms.

Comment by johnlawrenceaspden on A Medical Mystery: Thyroid Hormones, Chronic Fatigue and Fibromyalgia · 2016-05-19T21:47:35.427Z · score: 0 (0 votes) · LW · GW

At the fourth attempt, my doctor managed to get the local lab to test TSH,T3 and T4 simultaneously. He had to ring them up and ask them in person, apparently. It turns out that I've currently got TSH~2.5, and FT4,FT3 low-in-range. Given that that looks like central hypothyroidism, and that's under the influence of 1 grain/day of desiccated thyroid, we've decided we that we have no clue, and I'm carrying on messing around with random thyroid drugs aiming for relief of symptoms (which are all gone, but I keep having to up the dose to keep it so).

Basically Christ knows. If I'm not medically unique, there's something very funny going on.

Comment by johnlawrenceaspden on Welcome to Less Wrong! (8th thread, July 2015) · 2016-05-09T13:22:48.238Z · score: 0 (2 votes) · LW · GW

Welcome Alia! You sure sound like one of us. Hope you like it here.

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-05-08T23:23:29.705Z · score: 1 (1 votes) · LW · GW

Hi, there can be all sorts of things going wrong! Mysterious resistances, gland failures, conversion disorders, broken pituitary, broken hypothalamus, faulty deiodinase enzymes, etc. All potentially inherited or acquired. We really do seem to have no idea how this complicated system works or what it's all for, or what can cause it to go wrong.

But I would have thought that if there was widespread 'central hypothyroidism', someone would have twigged by now, since that form does show up if you do a full panel of hormone tests.

Or I would have thought that when I wrote this. By now I am in such despair about the pitiful state of medical research that I wouldn't be surprised if they'd never thought to look, so maybe it is all just perfectly obvious from blood tests and the fools have ignored it.

And the question of 'what is the optimal treatment' is bound to be tricky. I'm just trying to demonstrate that the problems exist and are widespread and thus worth looking at!

Although Skinner certainly thought 'clinical hypothyroidism' could usually be fixed by bunging enough T4 at the problem. He does mention in his book that he sometimes used T3 or NDT, but he doesn't go into details. Various other people say 'mostly T4 with a bit of extra T3', but no-one has particularly clear ideas on what works and what doesn't or why.

Thanks for the reference to Ray Peat, I hadn't heard of him before. Can you link to the best expression of his thoughts?

Comment by johnlawrenceaspden on Talking Snakes: A Cautionary Tale · 2016-05-06T11:33:32.403Z · score: 2 (2 votes) · LW · GW

Took me about 30 seconds, but I'm only an ex-mathematician and I'm not as clever as g!

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-23T23:59:39.094Z · score: 0 (0 votes) · LW · GW

Hi Nancy, thanks! I've already seen that, it's in the evidence section of:

Even more disconfirmy is:

Where some Turkish fibromyalgia patients are actually hotter than they should be, to the point where the authors suggest it as a diagnostic criterion!

There's no doubt they're evidence against. I would have predicted the opposite. When I first saw these two papers (within half an hour) I gave up on the idea. I even told my GP I'd managed to refute it.

But after a couple of days of not believing it, I was just terribly confused, and I realised that they leave me wiggle room.

Basal metabolic rate has to be strongly related to surface temperature (all other things being constant), but there's no reason it should be related to core temperature.

And the thyroid hormones control the basal (i.e. sleeping) metabolic rate, not the active (field) rate.

So I can ignore the Turks (hot during the day), and the main thrust of the Hamilos paper, even though I feel really weaselly doing it.

But, the Hamilos group explicitly considered surface temperature, and they say that they measured basal metabolic rate and it was normal, but they don't give any details, and I can't figure out what they did with either.

If they were careless with the metabolic rate (say, measured it after a rest during the day), it's meaningless as a hypothyroid test. In fact during the day the metabolic rate might actually be higher, if metabolism in hypothyroidism is inefficient because the mitochondria aren't working properly.

And their core graphs do look a bit funny for CFS (but not for depression, which looks normal, sigh..)

On the other hand, Lowe checked for basal metabolic rate and temperature in Fibromyalgia, and found them both way low. I doubt he'd actually have gone to the trouble of trying to break his own idea formally and then faked his data, but it's possible.

And on the third hand, the whole reason for the Hamilos paper is that their CFS patients have been complaining about both low and high temperatures. Why are they doing that? I don't think the 'occult hypothyroidism' idea is well known in CFS circles. One hypothyroid symptom was the rather paradoxical 'intolerance to heat/intolerance to cold'.

I'm just hopelessly confused.

These papers alone, strong evidence against, I think, but not quite refutation.

All the other evidence I've ever seen, strongly in favour.

Skinner's open trial pretty much alone has convinced me that just thyroxine should work, which I didn't believe earlier because it's far too obvious to have been missed. And he also treated depression with it. He considered the possibility of placebo effect, and called for formal trial as one should, but thought it unlikely because the improvements were huge, some of them not subjective, and they were very lasting. And he was a medical researcher, so he knew about fooling himself. And his results are just far too good to be a mistake. He has to be 'right or lying'.

And actually, it seems medical statisticians don't believe in 'the placebo effect'. It's mostly regression to the mean and people trying not to disappoint doctors by saying that things don't work. (That's a bad bias if ever I saw one!)

But people who've been ill for years don't suddenly make full recoveries because you've given them something that should make them more ill, especially when they've all tried loads of freaky stuff before.

The Pollock thing is inexplicable unless their 100mg fixed thyroxine dose helped at least some of their patients. And whatever I think of their selection criteria, they did control properly, and neither of their groups could tell the placebo pills from the thyroxine explicitly, even though the controls were clearly made a bit ill by thyroxine.

In short, I don't actually believe the (widespread occult hypothyroidism) idea. But I do think it's plausible, and I think there's something funny going on with thyroids and all these 'new diseases' and I think I've made a good enough argument that it should be properly trialed.

So I'm now risking talking about it on the reddit CFS group. It seems to be news to them. I'm a bit worried they're all going to do what I did, but they are adults, and it's not very dangerous. I gave them Billewicz statistical test, which is designed to tell 'things that look like hypothyroidism' from 'actual hypothyroidism' by looking at the subtle symptoms like ankle reflexes, and slow movements, and hoarseness and puffy eyes.

So far two people score 'definitely hypothyroid', one 'definitely not', and one hasn't done the test but say's he's got a really good doctor treating his hypothyroidism who's titrating various mixes of thyroid hormones to get rid of all his symptoms but even when they're all gone he's still got disabling fatigue.

But that's even more nuts!

Some CFS is 'occult hypothyroidism' and some is 'something else, definitely not hypothyroidism' is completely crackpot. Not just ordinary crackpot. Occams' Razor! Two different causes for the same thing!

I think we need to take a proper look at all this.

As for the stupidity, whatever I was suffering from (that really does appear to have been occult hypothyroidism by all measures, and that's been apparently completely fixed for months by Floradix and desiccated thyroid) made me as thick as shit. I was so stupid, I couldn't even read. At one point I couldn't count to six. But I still got a couple of hours of lucidity every day, usually in the late evening.

Thanks ever so for you interest, and do send me any more things you dig up. I'm as blind as anyone else, and perfectly capable of ignoring evidence against, even though I'm trying really hard to allow for that!

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-23T18:06:01.624Z · score: 0 (0 votes) · LW · GW

No, it just means we put very little weight on individual studies. We don’t pay much attention to results that haven’t been replicated a few times, and rely heavily on summaries like meta-analyses.

So, for instance, Skinner, who may or may not have demonstrated and published something really important and blindingly obvious in hindsight, gets ignored and then eventually pretty much struck off for it, even though his results could have been put to formal trial for about 50p.

Is the only way we learn anything new if seven different people do the necessary research at their own expense and get their lives destroyed as a consequence?

And nothing done outside the system is worth anything at all?

And the opinions of patients and doctors are 'placebo effect?'.

And the patients' obvious symptoms are 'psychosomatic/somatoform/hypochondriac/malingering'? All the same bloody word, changed every decade or so when people realise what they mean.

And someone invents a wonderful new measurement technique that bears on a hard problem, and it's used to make things worse?

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-23T18:02:37.591Z · score: 0 (0 votes) · LW · GW

No, it just means we put very little weight on individual studies. We don’t pay much attention to results that haven’t been replicated a few times, and rely heavily on summaries like meta-analyses.

So, for instance, Skinner, who may or may not have demonstrated and published something really important and blindingly obvious in hindsight, gets ignored and then eventually pretty much struck off for it, even though his results could have been put to formal trial for about 50p.

Is the only way you learn anything new if seven different people do the necessary research at their own expense and get their lives destroyed as a consequence?

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-23T17:00:48.574Z · score: 0 (0 votes) · LW · GW

Not knowing anything about the subject, I would expect to observe a low basal metabolic rate in CFS regardless of its ultimate cause or causes.

Ooh, why? I thought that was thyroid and starvation?

I mean, low once you adjust for all the known predictive factors, e.g. age, sex, height, weight and exercise. Obviously people who have trouble standing up are going to show low BMR in absolute terms. But I mean 'even after adjusting for sedentary lifestyle'.

Surely the 'stress' theory predicts high BMR?

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-23T16:46:52.053Z · score: 0 (0 votes) · LW · GW

The alt med people have a lot of funding. It’s a multi-billion-dollar industry.

OK, but none of that funding is going in favour of the likes of John Lowe or Gordon Skinner or Barry Durrant-Peatfield or Sarah Myhill, in fact those people are losing/risking their licences and livelihoods in order to try to help people. They may or may not be right about their methods, but they're not doing it for the money!

Ken Blanchard appears to have built an endocrinology practice out of treating hypothyroidism 'functionally', but I'm sure he could have done just as well doing it 'conventionally', and been risking far less legal trouble.

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-23T16:42:24.824Z · score: 0 (0 votes) · LW · GW

Okay, but you said it was evidence in favor of your own hypothesis. That’s what my question was about.

I must be confused here. Sorry, I'm not deliberately evading your (good!) question.

If none of the patients had had any sort of thyroid problem, I'd have expected it to be equally bad for everyone. That would be strong evidence against 'it's widespread and treatable with thyroxine', and very weak evidence against 'CFS is thyroidy'.

A test is allowed to produce weak evidence one way and strong evidence the other. Imagine rolling a dice. If it comes out 5, you've not learned much. If it comes out 7, that's a big surprise, and enough to smash the 'six-sided' theory into the very long grass.

If a fair number of the normal-TSH patient group had nevertheless had a thyroid problem amenable to thyroxine 100mg/day, then I'd have expected that to make a difference between healthy controls and patients. Which appears to be what happened. I think that's actually fairly strong evidence in favour of 'common and treatable with thyroxine'. Nowhere near proof, but it strengthens Skinner's paper, which is already strong evidence, rather than weakening it.

I'm actually really surprised by that. That thyroxine made any difference at all.

I believed it was thyroidy just on the argument in 'A medical mystery'. (Looks like hypothyroidism, existed in Victorian times, didn't exist 1900-1970 when hypothyroidism was diagnosed by symptoms and treated with desiccated thyroid, which has too much T3 in it, validity of TSH test never checked)

I've been saying for a while that it must be to do with T4/T3 balance, because I couldn''t believe that if it was amenable to thyroxine that wouldn't already be known. Because I literally couldn't believe that medical science could have been that careless and stupid.

But now I'm looking at the only two papers I've ever been able to find on the subject, and thinking, 'they both imply that thyroxine works'. It might not be optimal, but it seems to do something!

And sure, it's nowhere near proof, and I wouldn't want public health policy changed on this kind of evidence. But it's worth a good look. And the level of carelessness implied is just staggering.

If they'd just made a terrible mistake and then ignored millions screaming for help for forty years, that would be criminal, but John Lowe and lots of medical doctors had/have been asking, perfectly clearly and sanely, for endocrinology to check its beliefs, for decades. And they've been marginalised, ridiculed, and persecuted for it. "TSH tests normal, therefore it can't be a thyroid issue." Over and over and over again. No evidence whatsoever. Even if CFS turns out to be caused by magic space pixies who deliberately confuse all the experiments, medical science has my utter contempt. Six months ago I would have said: "There's no point to alternative medicine, if they had anything that worked it would just be real medicine.". In fact my friends (and the chiropractor I used to go and see even though I believed her treatments didn't really help and I was allowing myself to buy a placebo) tell me I used to say that quite a lot. Because I trusted something extravagantly publicly funded, that called itself a science, to use the scientific method. After taking a (fairly brief) look at this one problem, I'm now thinking "How many lives have these morons fucked up through their arrogance and carelessness?". "How much of the random crap in Holland and Barrett actually works, and how much public money is being shoved down the drain buying chemical poisons for the ill on dodgy evidence produced by drugs companies when they could be fixed with cheap treatments that have been known for years?"
Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-22T15:27:12.922Z · score: 1 (1 votes) · LW · GW

Oh God, where will this end? Is it really only physics and chemistry that aren't sloppy cargo-cults, or are they broken too?

A lot of this, I think is to do with taking tenure away from young academics. Once upon a time once you'd proved basic competence and cleverness, you could spend your whole career being careful about stuff. These days you've just got to turn out crap as fast as possible. And you spend most of your time applying for grants.

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-22T15:13:03.013Z · score: 0 (0 votes) · LW · GW

Tsk, summoning the mind-killer in broad daylight. This is supposed to be a family-friendly discussion of taking mad drugs off of the internet for made-up diseases in futile defiance of medical advice. Let us not side-track onto the emotive issue of banana curvature, which is very difficult and sensitive for the English people (sniff).

Downvote me back, will you? Tit-for-tat is the whole of the law.

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-21T15:45:42.233Z · score: 0 (0 votes) · LW · GW

Well quite. In America I think there have been episodes of 'hamburger thyrotoxicosis', so putting thyroids in food is now illegal, which is good. I'm not sure what the European situation is.

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-21T15:23:32.652Z · score: 0 (0 votes) · LW · GW

That's interesting. In England and America I think that it would be illegal to sell desiccated thyroid as a prescription drug without a prescription. But it's perfectly legal to sell it as a food supplement. It's just dried bacon, after all.

It's quite difficult to find (people with TSH-detectable hypothyroidism get treated by their doctors with thyroxine, and for most people (~90%??) that seems to work perfectly), but it can be found.

I expect some fascist bastards will get round to outlawing that sooner or later. Before they do, we ought to find out whether it will cure CFS etc. After all, once it's illegal people will have to buy it from criminals, and I don't trust their quality control. Also it might put the price up slightly.

I'm interested in what the bad things that happened in France were. Obviously this is quite a potent drug, and so if it's for sale to the general public it is certain to cause harm from people taking far too much and overdosing.

But at the moment I think it's fairly safe in small doses for trial periods. And I'd very much like to know if that's not true.

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-20T22:58:07.273Z · score: 0 (0 votes) · LW · GW

P.S. Note the awe-inspiring lack of smugness with which I present:



I bloody said it would turn out to be the reason smoking's bad for you, didn't I? And at the same time it's evidence that acquired hormone resistance exists, and this one fingers an environmental cause.

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-20T22:33:44.341Z · score: 0 (0 votes) · LW · GW

Isn't it still "its day"?

Opinions are divided. There's me and some dead guys, and everyone else. Everyone else thinks it's a solved problem.

By the way, the people who you insist on calling "fat, tired, and with dry skin" are in subset three. They exhibit clinical symptoms of hypothyroidism.

They absolutely do! Back in the day, they would have been referred to endocrinologists on suspicion of hypothyroidism, who would have (if they were very sophisticated and modern endocrinologists) used Billewicz' test to sort them into definite, definitely not, and 'therapeutic trial' groups. His test didn't rate these three symptoms, or lethargy or stupidity, because most everyone he saw had them, so he would look at all their other symptoms to make the diagnosis, looking for things like slow reflexes that are characteristic of hypothyroidism, and weight them to get a score. It really is a very careful piece of work, that test.

He would treat the 'definites' without further ado, send the 'definitely nots' off to people who were into diabetes etc, and be careful with the rest. Including all sorts of unreliable lab tests and therapeutic trials.

Luckily the therapeutic trials are not difficult to do, because with desiccated thyroid/T3 you seem to get either get a fairly rapid improvement, or you get hyper symptoms. (you might get both of course, in which case dose probably too high)

Other popular ways of trying to work it out involved cholesterol and basal metabolic rate.

Broda Barnes thought waking armpit temperature beat all this and just handed it out to anyone who woke up cold.

And the fact that it has been sprayed around at random for a hundred years without anyone having a word to say against it implies that it's pretty damned safe. If you give yourself a massive overdose, then sure, you can probably give yourself a heart attack, but you'd need to be way way more criminally careless than I can imagine any (modern) doctor being.

Osteoporosis and atrial fibrillation (both ghastly things) are associated with low TSH, so it's doubtless not a good idea to induce hyperthyroidism in people. And I think we should be careful not do that.

Barnes might have been deluded. I certainly started off thinking that he was, but one thing he was into was records and statistics. He thought his patients healthier than the general population. Including low rates of heart trouble. Which is just bizarre if what he was seeing was today's CFS etc population, who seem to be really ill and then go on to be even more ill. Unless his treatments actually helped.

Hell, let's do all four! If there's a subset of fat tired stupid lethargic CFS patients with dry skin and high Billewicz scores, low basal metabolic rates, high cholesterol, and low waking temperatures all at the same time, then let's run the Scottish trial on them and see what happens. That should be enough to break the TSH test, at which point, I imagine there will be an absolute explosion of research.

I couldn't agree more that it's really really important to understand mechanism. I'm into 'explanations' and 'causes'. I think you are too. I get the impression that they're a bit out of fashion in medicine.

Well, it's pretty clear that it will help some people

Ooh, is it me and you and some dead guys now? Welcome! Sorry some of us aren't that talkative. Damnit, that means I need another opponent. Devil's advocate isn't good enough. It needs to be someone who hates the idea.

Dies at noon.

Oh dear, poor Charles. The English crown was a bit of a poisoned chalice for the Stuarts wasn't it? Still, he made it to 53 and they did call him the Merry Monarch. Anyone who dies in office of excessive mistress-related-activity hasn't had a totally wasted life.

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-19T22:50:55.249Z · score: 0 (0 votes) · LW · GW

I’m talking about conservation of expected evidence.

Sure, this experiment is evidence against 'all fat, tired people with dry hair get better with thryoxine'. No problem there.

Terminology then. When you said “Thyroxine is very strongly disliked by the healthy controls (they could tell it from placebo and hated it),” it suggests they could identify the active treatment.

Yes, it is kind of odd isn't it? One of the pills apparently made them a bit unwell, and yet they couldn't tell which one. I notice that I am confused.

The people in the study had symptoms.

You're right. I think I should have said "This treatment is harmful to most people".

This is normal...

But that's awful! Once, there was a diagnostic method, and a treatment that worked fine, that everyone thought was brilliant. Then they invented a test, which is very clever, and a good test for what it tests, and the result of that is that lots of people are ill and don't get the treatment any more and have to suffer horribly and die early.

If that's normal then there's something badly wrong with normal. A new way of measuring things should help!

we have to decide which ones are worth considering.

Sure, I'm trying to make a case that this one is worth considering.

it might not be possible to design a study ..

I think the Scottish study with stricter entry criteria for the patient group would do. If that failed, I would be quite surprised.

If someone did the same thing with stricter entry criteria and used desiccated thyroid and titrated doses and it failed I would be so surprised that I would give up.

Seriously, if 'start off with low doses and keep raising the dose until you get a response' is inaccessible to testing, then something is broken.

But in fact, just 'low basal metabolic rate in CFS' would be good evidence in favour, I think. We can work out optimal treatments later.

And if it turned out that there wasn't a subset of CFS patients with high Billewicz scores and low basal metabolic rates, I'd give up. No study needed.

I can’t stress this enough: in biology, you can use peer-reviewed evidence to make plausible arguments for arbitrary hypotheses.

At that point, we're all post-modernists aren't we? The truth is socially determined.

science is unreliable but is still better than ancestral wisdom

Science is not unreliable. If I can surprise a physicist or a chemist about something he is sure of, he will be very very interested, and science will quickly rearrange itself around the new fact. It took about five years to completely overturn classical physics and replace it with something we haven't managed to surprise yet, even though everyone knows that the new theories are broken and is actively trying to find things that happen that they don't predict. And classical physics is still damned good in the domains that it used to work in.

There's at least a possibility here that medical science is getting beaten hollow by chiropractors and quack doctors and internet loonies, none of whom have any resources or funding at all.

Even the possibility is enough to make me think that there's something appallingly badly wrong with the methods and structure of medical science.

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-19T21:37:06.116Z · score: 0 (0 votes) · LW · GW

Well, 'hypothyroidism' was a very difficult and polymorphic badger in its day. But a thing that is difficult to detect can still be a thing. Consider neutrinos and gravity waves and unicornes, which no man nowadays doubts of.

And as for 'medicalise deviations from the theoretical optimum', most chronic fatigue people are already bothering their poor doctors incessantly, and being given (with the best will in the world) a selection of nasty things that mildly alleviate some of their symptoms. CFS is a horrible thing. As Hitler says in the film Downfall:

"'Chronic Fatigue Syndrome' ? they might as well call Leprosy : 'Chronic Dandruff Syndrome'".

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-19T21:28:59.492Z · score: 0 (0 votes) · LW · GW

Well sure, and as an advocate of 'Traditional Western Medicine', I suppose I should be equally hurt by the disappearance of that once beloved (by doctor and patient alike!) treatment, so well supported by the humorous theories of Aristotle and Galen.

So I suggest that we appeal to Almighty God to show to us His Wille, by using the ritual of randomised controlled augury, as our fathers have shown us.

We should carefully select our patients using the strategems of Billewicz, and we should have three treatment arms, one with desiccated thyroid, one with leechwork and lancettry, and one with that flower of the modern schoole, graded exercise therapy.

I have a feeling that thryoid will come out well in the comparison. I am somewhat unclear as to GET vs leeches.

Let the best quackery win!

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-18T20:11:54.067Z · score: 0 (0 votes) · LW · GW

Actually I think it was only 'very hard' for GPs. It seems that most endocrinologists back in the day just ruled in or ruled out the obvious cases, and experimented with small amounts of thyroid on the rest. That doesn't look like a bad approach to me. Small amounts of thyroid with someone competent watching you won't hurt you.

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-18T20:07:41.122Z · score: 0 (0 votes) · LW · GW

Something like 'inadequate thyroid-hormone-mediated regulation of metabolism'.

Certainly that would include primary, secondary, and tertiary hypothyroidism, as well as the various forms of 'peripheral resistance', and the conversion disorders. (TSH probably detects the primary form. The question is 'how widespread are the other things.')

A good clinical correlate for all of those would probably be the Billewicz score from '68. Which he pretty much did work out by 'that which is made better by consuming desiccated thyroid'.

We might want to call all that 'easily-treatable clinical hypothyroidism', or 'twimbbcdt'. Congratulations, trope-namer!

But actually there are consistent reports of people with all the usual symptoms who don't respond to the sane use of T4/T3 or NDT, but who do improve on insanely high levels of T3.

So I'd actually want to draw 'hypothyroidism' a bit wider than "that which is made better by consuming desiccated thyroid".

And I bet you can get all sorts of 'dysthyroidism' too, where there are some resistant tissues but some are fine, and you or your system raises levels of this or that to compensate, and makes some bits of you hyper and some bits hypo at the same time.

If there's that, we might actually need to understand how it works to treat it. Imagine...

And then, I bet if there are two acquired hormone resistances then there are others, and I bet they're all horribly intertwined, and lots of nasty pathogens either taking advantage of or causing them, so there's probably a whole swamp of horrors that get a bit better with thyroid but that no-one would call 'hypothyroidism'. We'd probably need to call those 'acquired generalised hormone resistance disorders', which gives the pleasantly onomatopoeic "aghrd". And we're not going to nail those without actually rolling up our sleeves and playing around.

At the current rate of progress it should all be sorted out well after we've destroyed the universe by careless use of computers.

Unless it is all being caused by nasty chemicals in the environment, in which case we'll probably make ourselves so stupid that we just blunder straight back into Malthus' trap in a few generations. And that should sort it all out 'the natural way'

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-18T17:52:16.071Z · score: 0 (0 votes) · LW · GW

Actually I wrote back once you pointed that out, and we've swapped a few e-mails since, but now he's gone silent too. It is hard, this crankery.

I explained the whole bloody thing to him, with papers attached, and said:

What I would expect you to say is:

(a) We hear that all the time, and it's rubbish because [link]

(b) That's not a bad idea, but it can't be true because [implication that I have missed that isn't true]

(c) [redacted for fear of identifying correspondent]

and he said:

I [have specialised in a thyroid-related field but I don't see CFS patients] Therefore I have no experience nor opinion about the topic you want me to address.

Am I reading too much into this, or are those the words of a man trying not to get his name mixed up in a massive scandal? Are there in fact lots of people perfectly well aware that there is something dreadful going on but no-one wants to be the first to say it out loud in public?

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-18T17:46:43.674Z · score: 0 (0 votes) · LW · GW

This is absolutely evidence that huge doses of this stuff knacker your thyroid. But huge doses of most nasty chemicals probably do that. There's no particular reason to finger this as a significant cause unless it's in the environment in huge doses.

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-18T17:43:39.489Z · score: 0 (0 votes) · LW · GW

Agree with this too. On the one hand, Simpson's Paradox, on the other hand, Simpson's Paradox. But if you don't expect male/female confounder, it just gives you three goes at the magic p<0.05.

Frequentism. It's just broken.

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-18T17:25:57.598Z · score: 0 (0 votes) · LW · GW

Thank you so much, intelligent and careful criticism like this is exactly what I started posting on Less Wrong for!

Why is the Pollock trial evidence supporting your hypothesis?

Well, it's only fairly weak evidence, but it does seem that the healthy controls reacted differently to the patient group. What it really proves is that thyroxine isn't just a nice recreational drug that everyone likes. Healthy people dislike it. But it seems to have been less bad for the patients on average. So I imagine there were some people in the patient group who reacted well.

What I'm saying is that Skinner got strong evidence for the idea, and wanted it confirmed by PCRT (and I agree, that's necessary). So they did a PCRT, but not very well because they didn't find patients carefully. And yet they seem to have supported him anyway, but everyone thinks that they refuted him, because they didn't quite understand what he was saying.

What outcome from the trial would you have considered to be evidence against it?

If none of the patients had had any sort of thyroid problem, I'd have expected it to be equally bad for everyone. If that had been the result, then I'd have had to think that 'type 2 hypothyroidism' is rare, or that 'fixed doses of thyroxine don't fix it'. For a long time that's exactly what I did think! I was assuming you might need T3 as well and you might need to adust the ratio carefully. Skinner and Pollock together make me think that it might be fairly common, and mostly fixable with T4 alone.

Also, what part suggests that the healthy controls could distinguish the treatment from placebo? From Table 4, it seems that the reverse is true.

That shows that when they were asked which was the active preparation, they couldn't tell. They appear to have had a 'nocebo' effect, where they interpreted everything they felt as an effect of the drug. That's as expected.

What makes me think that they felt bad on thyroxine is table 2, where all the 'self-reported' psychological scores have got worse from thyroxine. In particular p=0.007 for the decline in Vitality. Since, as you point out, they really didn't know which was which, it's hard to see how they could have faked that.

At first glance, the results from that study look like straightforward evidence that this treatment is actively harmful.

Absolutely this treatment is harmful to healthy people. It should cause 'hypermetabolism', which is unpleasant. And severe hypermetabolism is awful. Very like the manic phase of manic depression. You should be careful not to give drugs to people who don't need them. That's why in the old days, if they weren't sure, they'd give you a bit and watch to see what effect it had. That was pretty much their test, except in the obvious cases.

but choosing a single dose is normal procedure.

Yes, but that does mean that anything that needs careful dose control will get rejected. In this case I think it might have made the treatment less effective, but it shouldn't have ruined it. I'm not making any criticism of the people who did this trial, I think it was a brave try and they did it well. I just don't think it's enough to refute Skinner. In fact I think it was supportive.

From what I’m reading I don’t think there is any recognized clinical diagnosis of hypothyroidism. The TSH test is the gold standard.

There was once. The paper:


was the last word in 'clinical diagnosis'. It was very very difficult to do, and GPs tended to refer suspected cases to experts. In doubtful cases they just tried treating it with small amounts of thyroid and checked that people improved rather than being made anxious and hyper.

The TSH test replaced that around 1970. But they never seem to have checked that clinical and biochemical diagnoses detected the same things, and after that there was the slow emergence of all sorts of nasty diseases that look very like hypothyroidism in the clinical sense but have normal TSH.

The TSH test seems to have been accepted (and then ruthlessly enforced) on the basis of theoretical arguments that weren't checked experimentally.

I do think that the TSH test detects gland failure quite well, in fact I think that if your thyroid gland gets destroyed, your TSH value will become huge. My (excellent) GP tells me that he sees people with TSH 30 with no symptoms at all (yet! Their thyroids are obviously on the way out...).

In fact the original 'normal range' for TSH was very wide indeed. And I think that's probably right too. Over the years the 'normal range' has got narrowed to the point where it's now so narrow people with abnormal TSH usually don't have any symptoms, and the noise in the test can put you outside the range. That's kind of weird. See recent AACB study where they thought the upper limit of normal should be 2.5.

There was a recent attempt to define a new clinical score (Zulewski et al), but the authors of the paper who'd constructed it refused to endorse it because the symptoms didn't correlate with TSH. That says to me that the test isn't detecting the disease it's supposed to detect.

You have the burden of proof

Absolutely accept that! And if Skinner was right, it should be dead easy to prove. Just re-run the Scottish trial using Billewicz as the entry criterion. It would be better if you could adjust the dose, but it should work quite well with a fixed dose, if you accept you're going to under-treat some people and over-treat others. Actually I'd rather use titrated doses of desiccated thyroid, since that's what they used to do, or T4/T3 combinations, but if I believe Skinner then they should all work, and it's just a question of which works best.

Could you summarize your support for this claim? Are these the only two peer-reviewed articles?

These are the only ones I can find through google scholar / pubmed. That in itself is really surprising and one of the things I can't explain! Why has such an obvious thing not been ruled out? Real doctors seem to try it all the time, find it works, and then get persecuted for trying it.

All the rest of it is anecdotal, from alternative sources, but there's a mountain of it. Just google. If people have tried this and it didn't work, they're keeping very quiet. All I've heard against is 'it helps, but it doesn't fix it entirely'. And the alternative people say exactly that themselves, and reckon that there's usually something adrenal going on as well.

I'd point primarily to Broda Barnes, John Lowe, Kenneth Blanchard, Gordon Skinner, Sarah Myhill, Barry Durrant-Peatfield, the various thyroid activist groups, Kent Holtorf, and 'Wilson's syndrome', off the top of my head, but there's plenty more where that came from. And a lot of those guys are actual medical doctors. The big exception is John Lowe, who was a chiropractor. But I've read a lot of his stuff and he was a very careful, thoughtful man.

90% of medical research findings are false

Indeed. The whole thing is a disaster. John Ioannides said 'Evidence Based Medicine Has Been Hijacked'. But I think it's worse than that. By saying that you're going to ignore the experience of doctors, and only accept very expensive evidence that can only be provided by wealthy sources, and even then using methods so bad that they're practically guaranteed to produce false answers, you've completely cut yourselves off from the truth.

I'd go further and say 'Evidence Based Medicine Has Been A Catastrophe'. I'm not more than half-convinced this thryoid-craziness is true, but I think the fact that it's never been properly investigated is a complete scandal.

I'm not against "evidence based medicine" because it's based on evidence. I'm against "evidence based medicine" precisely because it's based on ignoring most of the evidence. -- GK Chesterton's Homeopath.

I was helping a consultant friend revise for an interview the other day, and one of the practice questions was 'describe the hierarchy of evidence'. He put 'expert opinion' bottom.

Really? Forty years of experience in treating patients is less valuable than a single anecdote published in a journal? Really?

And of course, it doesn't actually work that way. The TSH test ruling out hypothyroidism is expert opinion. Its reliability is unfounded dogma. I can't find any evidence for it as the sole measure of thyroid system function at all.

Comment by johnlawrenceaspden on Open Thread April 11 - April 17, 2016 · 2016-04-17T21:48:43.644Z · score: 0 (0 votes) · LW · GW

I didn't know about all y'all. That's also pretty cool. Does "y'all" carry the implication "but not all y'all"?

Comment by johnlawrenceaspden on Open Thread April 11 - April 17, 2016 · 2016-04-16T15:52:51.956Z · score: 5 (5 votes) · LW · GW

A rabbi, a priest and a Bayesian walk into a bar. What's the probability this is a joke?

Comment by johnlawrenceaspden on Open Thread April 11 - April 17, 2016 · 2016-04-16T15:51:03.403Z · score: 1 (1 votes) · LW · GW

Your son will do well. Bloody school. Bloody homework.

Comment by johnlawrenceaspden on Open Thread April 11 - April 17, 2016 · 2016-04-16T15:36:51.901Z · score: 0 (0 votes) · LW · GW

Cabinet Minister: On se tutoie?

Mitterand: Si vous voulez.

Actually it's dying out in French (or possibly going back to being a singular/plural distinction rather than a familiar form), I sound gloriously stuffy because I'm not very good at the tu forms and tend to call people vous even once I've been properly introduced. My French teacher said "You will never know anyone French well enough to call them tu, so there's not much point in learning that, except for the exam". That was probably true in the 1950s.

In Greek and German it's even worse, the second person singular and plural are both familiar, for friends and family only. With strangers you have to say things like: "Would the gentleman care for a glass of beer", and sound like some sort of creepy servant.

Comment by johnlawrenceaspden on Open Thread April 11 - April 17, 2016 · 2016-04-16T15:29:30.021Z · score: 0 (0 votes) · LW · GW

No, but there's American English. I've been trying to introduce you and y'all in Cambridge, it's pretty cool.

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-16T10:45:39.857Z · score: 0 (0 votes) · LW · GW

Oh, well spotted! Can anyone suggest a better crank e-mail? This is actually the only one I've sent since I found Skinner's paper, which is the thing that made me go from 'dark suspicion' to 'bloody hell, this is probably true'.

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-15T20:29:52.410Z · score: 0 (0 votes) · LW · GW

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.

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-15T20:25:18.766Z · score: 1 (1 votes) · LW · GW

Well, I don't want to sound like an endocrinologist, but there aren't many chemicals which don't have some sort of effect on thyroid hormones, and if this one screwed up the system in a way measurable by hormone blood tests, it would just cause ordinary hypothyroidism, and that would get treated.

As far as I can see, the evidence for it causing any sort of subtle dysfunction is non-existent. All I've seen is the one study, but it sounds from that as though it would be safe to ingest in small doses.

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-15T20:17:41.523Z · score: 0 (0 votes) · LW · GW

Oh, and a postscript.

Gordon Skinner wrote a book: Diagnosis and Management of Hypothyroidism

It's digressive, irreverent, and gloriously politically incorrect. I love it, but I recognise a certain British sense of self-deprecating humour which will not go down terribly well with everyone.

In my reading of it, he is full of self-doubt, and finds the behaviour of his own profession ridiculous and is hiding behind his jokes and raw language.

He describes many years of treating hypothyoidism by its symptoms, pretty much ignoring lab tests. As he describes it, it is quite hard to get wrong, and the major danger is missing other diseases, which also don't show up on the standard tests.

He claims to get hundreds of patients every year, and he doesn't report many cases where he got it wrong.

Now, this man is right, or he is completely deluded, or he is lying.

I find it impossible to imagine what his motive for lying might be.

Towards the end of his career and life, apparently, the GMC decided to make an example of him, and ordered him never again to prescribe thyroid hormones without the consent of an endocrinologist.

Can anyone find out why they did this? Did they have any good reason?

He appears to have spent the rest of his life advising various internet thyroid support groups, and campaigning against the TSH test.

Gordon Skinner died in 2013.

Here is what some thyroid internet loonies wrote as his obituary:

What was he, people? Saint or madman? I think he has to have been one or the other.

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-15T19:50:34.109Z · score: 0 (0 votes) · LW · GW

I got a reply from an actual endocrinologist! I'm not going to use his name because ethics, and because it was kind of him to reply at all, and more than any of his colleagues have done, but am I wrong to detect a certain lack of curiosity? Or do you think they're all too busy beavering away at the problem to bother answering e-mails from cranks?

to: subject: crank-trap

Dear [First Name],

Is there any reason why people think that thyroid hormone resistance is only congenital and never acquired?

Given the widespread acquired resistance to insulin it seems an obvious thing to look for.

I imagine you get a lot of e-mails. Please don't feel you need to make a lengthy reply. A link to a paper or web page will do!


P.S. I've attached a paper by one GRB Skinner in Birmingham, UK. Assuming he's not just making up his data it's hard to explain his results.

[Attached Skinner paper where he cures 140 people with hypothyroid symptoms but normal blood tests by giving them thyroxine]


Mr. Aspden, Diseases have names and definitions. It so happens that the term resistance to thyroid hormone (RTH) is applied to a syndrome, inherited in a dominant fashion. It has three forms RTH alpha, RTH beta and nonTR-RTH. What is described in the publication you attached does not have the clinical findings and laboratory tests results of RTH. The authors have not found the cause nor given a name for what they describe.



Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-15T19:19:30.340Z · score: 0 (0 votes) · LW · GW

I totally concur. 10mg/kg/day is a gram a day. If I took that amount of thyroid hormone, which I believe to be one of the safest drugs ever used, and of huge benefit to a large subset of the population, I would confidently expect to give myself an immediate heart attack. At the very least it would make me spectacularly ill.

No toxicologically meaningful differences were observed between the control and AP-treated groups with respect to survival, clinical observations, body weights, food consumption, water consumption, ophthalmology, hematology, clinical chemistry, estrous cycling, sperm parameters, or bone marrow micronucleus formation.

So it's not buggered them up too badly.

For comparison, if you took the poor wee things' thyroids out, then you'd expect them to display horrible symptoms and die off in droves.

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-15T19:01:58.313Z · score: 0 (0 votes) · LW · GW

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....

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-15T18:55:22.216Z · score: 1 (1 votes) · LW · GW

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?

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-15T17:02:11.832Z · score: 1 (1 votes) · LW · GW

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.

Comment by johnlawrenceaspden on The Thyroid Madness: Two Apparently Contradictory Studies. Proof? · 2016-04-15T15:49:54.540Z · score: 2 (2 votes) · LW · GW

I'm afraid I don't have the faintest idea. It certainly fits in the general 'pathogen, immune defense, recent environmental' bag, and if it interferes with iodine chemistry then it sounds more likely than 'randomly chosen thing in that bag'.

If it's true, it should be a simple experiment to inflict the stuff on rats and cause thyroid problems. If it doesn't sod up the rats (even in small amounts) then there doesn't seem to be a strong reason to believe that it would do anything nasty to us. It all works pretty much the same way. Do you know of any relevant experiments?

The central problem seems to be to get medicine to pay attention to the existence of thyroid problems with 'normal' TSH. At the moment they seem to be being run ragged by witch-doctors, but I'm not sure I trust the witch-doctors to do the job properly either. They seem to have convinced themselves that it's mercury fillings or PCBs or fluoride in the water, or anything else they can think of.

If medicine can be persuaded to find out whether there's a real problem, rather than just a weird information cascade from Broda Barnes that's somehow hoodwinking thousands of people into believing they've got better by trying things that should harm them, then I kind of semi-trust it to investigate the possible causes. But perhaps I am being naive.

Comment by johnlawrenceaspden on Open Thread March 21 - March 27, 2016 · 2016-04-14T21:20:54.955Z · score: 0 (0 votes) · LW · GW

I mean, is there some prediction that they disagree about, rather than 'falling tree sound' issues.

Comment by johnlawrenceaspden on Thyroid Hormones, Chronic Fatigue and Fibromyalgia: A Hypothesis and a Proposed Experiment · 2016-04-14T21:10:30.427Z · score: 0 (0 votes) · LW · GW

Agreed. All I'm really saying is "For God's sake, people, there's enough evidence here to have a look, surely?"

We do have Broda Barnes' word that taking desiccated thyroid long-term isn't that bad for people. He really does seem to have put people on thyroid at the slightest excuse, and he reckoned that his patient records showed them being healthier than the general population, especially for things like heart disease. Which is kind of weird given that his patients were the sort of people who went to see a doctor and got put on lifetime medication.

Maybe only the really healthy could survive his methods and everyone else scurried back to more conventional doctors who would sensibly tell them it was all their fault for fancying their parents? Increasingly I think that psychiatry has the same advantage as homeopathy, in that it can't possibly have any effect so they're not going to hurt people.

I don't know how seriously to take Barnes. Originally I thought he must have been a bit of a lunatic, until I ended up coming up with the idea above, which pretty much makes his observations as predictions. Then I read his book, and it said exactly what I thought it would say.

I disagree with his 'origin story', that the strange widespread hypothyroidism of modern times is because people aren't dying of infections any more. (He thought that hypothyroid children were prone to infections and so they'd have all died of tuberculosis before they became adults. I think that a 'genetic proneness to infection' would have bred out very quickly.)

But again, if he was handing out thyroid meds to people who already had enough of the stuff naturally, that should have hurt them, not made them less prone to illness.

He might have been a fraud, but it seems a weird thing to do..... Even if he was just disregarding his patients' complaints because he had given them thyroid and so they were damned well better, whatever they thought, he should have noticed them dying of heart attacks.

But I don't really trust anyone medical any more. And Barnes was an endocrinologist.

Comment by johnlawrenceaspden on Open Thread March 21 - March 27, 2016 · 2016-04-14T17:16:51.557Z · score: 0 (0 votes) · LW · GW

Not necessarily. "You can't do inference without making assumptions".

Is it even a fight? What is it that they disagree about? Neither side is saying "Decision heuristics that once worked well still work well in our changed world".

Comment by johnlawrenceaspden on How to provide a simple example to the requirement of falsifiability in the scientific method to a novice audience? · 2016-04-14T17:06:01.598Z · score: 0 (0 votes) · LW · GW

I think the second one works. It's unfalsifiable because it makes no predictions. If any heat-related thing can be explained by 'convection', then convection isn't saying anything.

Even nastier is Feynman's one about the baby-physics book which said 'What makes it move?' and the answer was always 'Energy makes it move'.

Comment by johnlawrenceaspden on How to provide a simple example to the requirement of falsifiability in the scientific method to a novice audience? · 2016-04-14T17:01:37.515Z · score: 0 (0 votes) · LW · GW

The world is fair.

Hmm. Then we shouldn't be able to find someone who was rubbish at maths and music at the same time. Or good at both. Easily falsifiable.

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