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!
Hi John, I came across this old discussion whilst researching prior to a meeting with NICE next week, they’re scoping for Thyroid disease guidelines finally.
Dr Skinner, who saved my thyroidless life, wrote to support me but for some very bizarre reason, his evidence was not published. Too controversial no doubt. He correctly asserted that there is absolutely no scientific basis for thyroid function tests as they are applied. These tests do not show cellular thyroid activity. TSH can be as exquisitely sensitive till the cows come home, it still cannot show if a person is cellularly lacking in thyroid hormone. The fact that the guidelines for the use of Thyroid Function Tests are based on poor quality evidence and out of date speaks volumes.
I have little faith NICE will research ALL the relevant evidence and fear CFS/Fibro/Thyroid patients will be further boxed into a dreadful ‘computer says no’ mode of diagnosis. But I am cynical after five years of fighting and ten years with no thyroid.
Hi Nancy, thanks! I’ve already seen that, it’s in the evidence section of:
http://lesswrong.com/r/discussion/lw/nef/the_thyroid_madness_core_argument_evidence/
Even more disconfirmy is: http://www.sciencedirect.com/science/article/pii/S0024320515301223
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!
Hi John, I came across this old discussion whilst researching prior to a meeting with NICE next week, they’re scoping for Thyroid disease guidelines finally.
I echo your frustration and sense that something is going on. I petitioned the Scottish Parliament five years ago on this matter, it’s still live. http://www.parliament.scot/GettingInvolved/Petitions/PE01463
Dr Skinner, who saved my thyroidless life, wrote to support me but for some very bizarre reason, his evidence was not published. Too controversial no doubt. He correctly asserted that there is absolutely no scientific basis for thyroid function tests as they are applied. These tests do not show cellular thyroid activity. TSH can be as exquisitely sensitive till the cows come home, it still cannot show if a person is cellularly lacking in thyroid hormone. The fact that the guidelines for the use of Thyroid Function Tests are based on poor quality evidence and out of date speaks volumes.
I have little faith NICE will research ALL the relevant evidence and fear CFS/Fibro/Thyroid patients will be further boxed into a dreadful ‘computer says no’ mode of diagnosis. But I am cynical after five years of fighting and ten years with no thyroid.