Thyroid Trouble

Why I Take Enough Thyroid to Kill a Horse Every Day, Even Though There's Nothing Wrong With My Thyroid

About thirteen years ago, on one of my very rare visits to my doctor, he decided that he needed to do a general health check on me.

I was, at the time, captain of a rowing club, organising and rowing in its first VIII, and I did a truly enormous amount of exercise, not just rowing either; I also cycled a lot, and I played cricket in a semi-serious way.

Every so often I'd go skiing for three full months and treat it like a job, skiing nine-to-five Monday to Friday and taking the weekends off.

All of this was just for fun. I'd never had the slightest problem with my weight or indeed my general health. I was extrovert and full of energy and I was clever and I made a good living solving people's problems for them using computers and maths in various combinations, which left me with a huge amount of free time.

I was also an enormously heavy drinker (roughly at the point where doctors start to worry about alcoholism) and a regular cigar smoker. I loved both very much.

My doctor told me that he thought I was one of the healthiest people he'd ever met, although he did advise me to give up smoking, and he told me that he wasn't that worried by my drinking since it didn't seem to be doing any harm, but said to get in touch if it ever began to be a problem.

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It was not long after that that I started to feel tired all the time. I started to develop a terrible ache in my legs that felt like overtraining but wouldn't go away. I think if I hadn't had all that experience of endurance exercise, I'd have described it as pain.

This got worse and worse over the next couple of years, and I slowly gave up all my beloved sports because I was just too tired to do them any more. Cricket was the only exception, because it's not actually that much exercise. I hung on to playing cricket for dear life, even though I didn't really enjoy it any more because I was so tired. But I would not let this horrible thing take my last sport away from me.

I pretty much gave up drinking. When I did drink, the hangovers were really bad, and that was all the incentive I needed to stop.

My mind clouded up, and I couldn't think straight any more.

At the time I was working on a very exciting project to 'Turn the Manchester Velodrome into a Wind Tunnel', for British Cycling. Which was a major part of Great Britain's rather startling performance in the Rio Olympics. I was doing the maths and programming bit, and my work had been going very well and was nearly finished.

And then, suddenly, I couldn't even understand my own computer programs any more. They looked like they had been written by someone who was much cleverer and more capable than me, and I didn't understand what they were doing or why. I had to give up this work, and someone else finished it off for me.

I noticed that I'd started to sleep about thirteen hours a day. Ten is normal for me, and has been all my life.

I was getting lots of other physical symptoms as well.

And at that point, I decided that there was something seriously wrong with me, and I should go and see a doctor.

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My doctor (Angus Stewart, now retired) was brilliant, he never tried to write off my problems as psychological, and he did every test that he could think of, but there didn't seem to be anything wrong.

I started reading through the medical literature myself, and a friend of mine who is a consultant psychiatrist also got involved. She told me almost immediately that, given that I'd had my thyroid tested (as well as lots of other things), she thought I had 'Chronic Fatigue Syndrome', which I quickly realised was what doctors call it when you're tired all the time and they don't know why.

Angus suggested "idiopathic hypersomnia", which is Greek for 'sleeps too much and we don't know why', and was decent enough to blush and say sorry when I told him I could speak Greek.

My psychiatrist friend suggested some other tests that might find the problem, and I found a few myself, and my wonderful doctor did them all. Still nothing.

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My friend gave me a book called: 'Overcoming Chronic Fatigue'.

The first half of the book was an amazingly accurate description of everything that was wrong with me, still the best description of my particular version of 'Chronic Fatigue Syndrome' that I have ever read.

The second half was a load of half-witted psychological gibberish that described all sorts of ways in which the patient could be doing this to themselves because they were weird in the head. I checked that I wasn't making any of the obvious mistakes that were described there.

My decline continued. There were days when I just sat around in my dressing-gown all day because I was too tired to do anything else.

I couldn't even procrastinate effectively. I was too tired even to dick about on the internet or read crap science-fiction novels.

I often had a couple of hours in the evening where my mind was working effectively. And I used that to try to research what it was that was taking my whole life away from me. Luckily I can see the scientific literature through my old connections with Cambridge University.

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I noticed immediately, rather to my surprise, that the medical literature is strangely crap. Not at all like the physical sciences that I'd been fascinated by since I was a boy.

It's all observational studies that conclude 'this is correlated with this', or 'this is not well-understood', which is code for 'we have no clue'. It didn't remind me of the scientific method as I understood it at all.

The only proper experiments are drug trials, which cost an absolute fortune, so they only get done if some drug company thinks it can make money off a new drug.

Lots of really basic tests of things that are widely believed have just never been done.

Causal mechanisms are never investigated. Even the various blood tests that they do aren't properly calibrated, the 'normal ranges' are usually far too wide.

I went from saying things like:

'If it worked, it wouldn't be alternative medicine, it would just be medicine', which I'm told I used to say a lot, to saying:

'If it's cheap and harmless and there are supportive anecdotes, it's worth a try, we've probably never tested whether it actually works'.

I'd always ignored the medical advice to give up salt and saturated fat, because even as a teenager it had been obvious to me that that was a priori ridiculous.

But I started to realise that it's all like that.

There are various things that obviously work. Miracles like vaccines and antibiotics and surgery. And those things are great, and have provided vast benefits and improved human life a very great deal.

And biochemistry and molecular biology are real sciences. People try to understand mechanisms. They do proper experiments.

But the great majority of things that don't obviously work are just witch-doctoring.

Treatments for things like chronic fatigue, depression, everything where the relevant causal mechanisms are 'not well-understood', I think are largely worthless.

Real Doctors don't have much of an advantage over Alternative Medicine in those areas. It's all just witchcraft and woo.

Maybe some things work, and maybe they don't, and we've no idea which things do and which things don't.

Most published research findings are false: (https://en.wikipedia.org/wiki/Why_Most_Published_Research_Findings_Are_False)

It’s cargo-cult science. (https://en.wikipedia.org/wiki/Cargo_cult_science)

We’ve known this for a long time.

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Eventually another friend, who's had struggles with anaemia, told me that I should try an iron and vitamin B supplement called Floradix.

Of course I'd been tested for anaemia and iron deficiency and various vitamin levels, and I didn't have any of that.

But my friend was very insistent that I should try it, and she said that the test ranges for all these things were far too wide, and she insisted that I could perfectly well have these various problems even though the tests said I didn't.

She nagged me relentlessly to “just try it and see what happens”.

By this time I was open minded enough that, after a vast amount of nagging, and with a real sense of shame about going along with woo, I decided to give Floradix a try.

And to my amazement, it seemed to work. Over a couple of months I made an amazing recovery. My doctor was very very pleased, and told me that since it had obviously helped, I should keep taking it.

And I did.

But one should always look gift-horses in the mouth.

So I started to search pubmed and google for 'things that are fixed by either vitamin B supplementation or iron'.

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That led me almost immediately to an obviously crank website called: ‘Stop the Thryoid Madness', which is all about the problems that thyroid patients have, and why the standard treatments don't work very well, and why the tests aren't very sensitive, and can tell you that there's nothing wrong with you for years until you eventually get a diagnosis.

And it talks about old-fashioned ways of diagnosing and treating thyroid disorders.

And it claims that they worked better than the modern methods with blood tests and synthetic hormones.

And on that site, there's a long and pathetic list of all the possible symptoms of hypothyroidism: (https://stopthethyroidmadness.com/symptoms/)

And I had most of them.

I managed to dig up, in the medical literature from fifty years ago, a statistical test for hypothyroidism diagnosis ‘by symptoms’ rather than ‘by blood test’ (https://pubmed.ncbi.nlm.nih.gov/4181088/).

No one's used it for years, but the doctor who made it was a specialist in thyroid disorders, and in 1968 it would have been the state of the art for thyroid diagnosis.

I thought it was one of the cleverest medical papers I'd ever read.

The author, a very eminent Edinburgh endocrinologist called Billiewicz had used a machine learning technique called 'naive Bayes classification' (in 1968!!) to work out which symptoms were most important to look at when you had a patient who looked like they might have hypothyroidism.

And I scored very very highly on this test. Dr Billiewicz would have treated me for thyroid disorder without the slightest doubt that the treatment would work.

And so I thought, "Well, if this Floradix-magic wears off, then that's something else I could try."

And with some considerable trepidation, and a great deal of research into side-effects and possible problems caused by treating someone who doesn't have a thyroid problem with thyroid drugs, I ordered a supply of desiccated thyroid off the internet.

Which is not illegal yet, although they are trying to make it so, and it is only a matter of time.

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At this point, I came upon the work of John Lowe, a chiropractor who'd treated people with Fibromyalgia (which is just Chronic Fatigue Syndrome with pain) with thyroid drugs, and claimed that it almost always worked, as long as you were careful and tried various combinations of drugs in the right order.

Despite being a chiropractor (not a profession I have a great deal of intellectual respect for), he struck me as very careful and clever, and he'd been doing exactly the sorts of things that I'd found missing from the medical literature. Proper experiments. Trying things and seeing whether they worked.

And I came upon the work of Broda Barnes, an American endocrinologist from the 1950s who'd come up with his own test for thyroid problems, and become convinced that there was an epidemic of thyroid disorders sweeping America, and treated his patients and eventually himself with great success.

And I came upon the work of Gordon Skinner, an English doctor, a consultant virologist and vaccine researcher, who'd decided that the thyroid blood tests weren't telling the whole story, and who’d diagnosed and treated hundreds of people with normal thyroid function and all the symptoms.

Gordon published a paper (https://www.tandfonline.com/doi/abs/10.1080/13590840050043530) showing how he'd cured hundreds of cases of Chronic Fatigue Syndrome and Major Depression (which look very similar in many ways, and both of which look a lot like classical hypothyroidism) using thyroid drugs.

It’s not decisive, there’s no way I’d change public health policy on such thin evidence, but a field that ignores such a clear and obvious signpost to the truth of what’s going on is beyond stupid.

Gordon Skinner was hounded to his death by the General Medical Council for his unorthodoxy.

And I came upon the work of Sarah Myhill, an English doctor who's been investigated thirty times by the GMC for her unorthodoxy, and who's had her licence to practise suspended once, and who will inevitably get struck off at some point.

And I found that Sarah was not only one of the few people in the medical world who believed that Chronic Fatigue Syndrome was a real disease and was trying to work out ways of treating it that didn't just involve gaslighting the victims.

I also found that she'd published a terrific biochemistry paper in 2009 in which she'd gone a long way to finding out what Chronic Fatigue Syndrome actually was (a dysfunction of the mitochondria).

You can read her brilliant paper here, it's very clear and well written: (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2680051/)

And it looks to me as though she's either lying through her teeth, or she's right. This is not the usual medical gibberish where some statistics have been tortured until they confess. This is science. This is clarity.

And she's been completely ignored by the entire medical establishment in favour of ludicrous woo and victim-blaming, except when she makes some mis-step and they take the opportunity to drag her to the Star Chamber again.

She is a brilliant and original thinker. She is the sort of person through whom human knowledge advances. Such people make mistakes.

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So when, inevitably, the magic of Floradix wore off, and my symptoms started to come back, and at that point it was 'try the scary thing' or 'commit suicide', because my life was not worth living any more, I tried a tiny bit of desiccated thyroid, to see what would happen.

And it was an instant, miraculous, unmistakeable cure.

I suddenly felt wonderful! I actually had to lower my initial dose because I was feeling far too energetic and bouncy. Hopping around like a teenager. Hypomanic most of the time and sometimes actually manic.

My psychiatrist friend, who'd been a great help through all this reading, actually suggested at this point that I had bipolar disorder, and that I'd been in the depressive state for years, (which is very difficult to tell apart from Chronic Fatigue and from Major Depression), and that I'd suddenly switched, by coincidence, into the manic state.

Or maybe the manic state was what had caused me to try my mad idea! This sounded very plausible.

So I stopped taking the thyroid, to test this theory. And the mania went, and all the bad stuff started to come back, within a couple of days or so.

And so I started taking thyroid again, only this time I took an even smaller dose.

And I was fine. Totally fine. Good as new. All my physical symptoms went away over a couple of weeks. My body temperature, which had been very low, went back to normal.

If my doctor had done this to me, I'd have thought he was a god.

Angus said: 'Look I don't think you should be doing this, but if you're going to, at least let me keep an eye on you and make sure that you're not doing yourself any harm.'

Which he did for years. And eventually even he was convinced that I'd managed to fix myself, in flat contradiction to all medical opinion.

The NHS in England actually prohibits doctors from even trying thyroid drugs on people with thyroid symptoms if they don't pass the blood test. I don't know why. They don't explain why.

Over the next six months, the effect kept going away, I imagine as my own thyroid backed off in response to the exogenous supplementation of the hormones that it's supposed to produce (there's a homeostat, see).

And I had to keep raising the dose to keep the effect going. But that always worked.

I was worried that it might eventually go wrong, but it never did. After six months I think I must have pretty much forced my own thyroid to stop producing hormones altogether. Put it on welfare, as it were.

And at that point the necessary dose stabilized, at 100ug of thyroxine, and 1 grain of desiccated thyroid per day, every day. Which is about what you'd need to give someone my size if their thyroid had failed completely.

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And that's been my daily thyroid dose for a long time.

For a long time I forgot I was ill, apart from having to take drugs every day. But there was nothing much wrong with me.

I took up a new sport, tennis, and I played it fanatically because I'm always a bit fanatical about things.

And my only health problems were sport injuries.

My regular thyroid tests usually indicated that I was badly hyperthyroid whilst having pretty much the right amount of thyroid hormones in my blood. (it's complicated)

And every so often, because I am an idiot and very easy to fool, and because you should always look a gift horse right straight in the mouth, I would try to reduce the amount of thyroid that I took, to see what would happen.

And every time, all the bad stuff came back.

Until now.