Blood tests back, blood drawn at time of highest ‘manic episode’ (24th Feb), 24mg/desiccated thyroid/day.
TSH 2.31 [0.35-5.5]
Accursèd lab at Addenbrookes’ this time tested T4: 13.1 [10.0-19.8] but did not test T3, despite GP’s firm request for T4,T3 IRRESPECTIVE OF TSH
Perfectly consistent with thyroid dialling back to compensate for NDT, T3 level too high, T4 level too low, which was my prediction. I’d have expected T3 to be at the top or out of its normal range. Perfectly consistent with Ken Blanchard’s idea that NDT works well for a few weeks, then goes wrong due to T4 depletion.
But at the time of the test I was iron deficient. Serum iron level: 10.2 [14.0-31.3] Iron Saturation 15% [16.0-50.0]. Ferritin, CRP, Transferrin all fine.
That’s new and a complete surprise since I’m still taking the iron/vitamin B that helped in the first place, and it had put my iron bang in the middle of the normal ranges for the last tests. We tested because we were worried about iron overload!
My GP would like a look at my thyroid without interference, and he thinks that the NDT cannot have made any difference.
He says it doesn’t matter whether I stop immediately, or taper sensibly.
So I’m going to stop it dead to maximise value-of-information.
I predict sudden horrible crash, followed by slow recovery.
He predicts I won’t notice.
I trust my GP. He is open-minded, thoughtful, clever and really cares about people.
It’s Friday 18th March 2016. Will stop sharp tomorrow and post results after a few days.
If I don’t notice, I think I’ve ruled out thyroid for myself.
If I do, I think I’ve got an endocrine problem of some sort.
Either way, where on earth has all that iron gone?
Sat 19th March
12:40, just woke up after 10 hours sleep, temperature measured carelessly : 36.6, blood pressure 152/83/59 very careful measurements (takes 15mins sitting still so don’t normally bother) : 36.7 133/74/53
Feel absolutely fine
14:20 Feel fine, weird feeling that vision is blurry, but nothing I look at is actually blurred.
16:00 Still fine, blurryness as above
19:40 Still fine, blurry feeling still, starting to get sleepy.
20:40 urrrgh, sleepy, cycle home should be interesting. night!
22:20 sack hit, careless temp 36.7, bp 168/91/80
Sun 20th March
1140 woke up (13 1⁄2 hours sleep, somewhat fitful)
careless temp 36.5, bp 153/87/65 very careful measurements 36.4, 127/72/54
Feel pretty good, blurry vision gone, but there’s an ache in my legs like I did quite a lot of exercise yesterday. I’m an ex-rower so I know what this feels like! I didn’t, I did my usual trivial 1-mile cycle to the office twice.
1440 made it to office, no harder than usual, blurry vision back.
1750 feeling of puffiness around eyes, blurry vision, tiredness. ache in legs gone
1900 sort of listless. trouble reading. slight feeling of fever.
2315 sleepy and a bit confused. heading for bed.
0020 sleep. careless temperature 36.5
Monday 21st March
0910 Woken up by attorney, phoning to see if I am OK. I am fine. Bouncy even. But not nearly ready to get up. Back to sleep. careless temperature 36.1
1340 Wake up naturally, but lie around for a long time not wanting to get up. (12 1⁄2 hours solid sleep) carelessly: 36.5C 135/85/62 carefully: 36.8C 132/77/54
1609 In Maypole with cup of coffee. Vision blurry, but full of passionate intensity whilst simultaneously lacking all conviction It seems that GP was correct, and there will be no sudden crash.
The Ethics Committee of the Insane Self-Experiment Research Foundation recommends that the experiment must continue.
With any luck, there’s nothing wrong with me at all. Maybe there never was. Maybe it’s got better!
Alternatively, CFS may come back over the next few weeks, in which case I reckon I know how to fix it.
Maybe the problem really is psychosomatic. In which case I wonder if I can use the old placebo, or if I’ve broken it and will have to think of a new one?
Or maybe I’m a loony. That will be ok. I’ve been a loony all my life and I can deal.
0000 I feel fine. A little feverish perhaps, but very capable and enthusiastic, not CFSy at all. No ache in legs, no blurry vision. Heading for bed now.
0140 Finally to bed. careless temp 36.8 bp 156/94/74
Tue 22nd March
1040 Woke naturally after nine hours sleep. careless temp 36.2 bp 141/87/61. Made cup of tea. Realised after about 15 mins that I was shattered and went back to bed.
1300 Woke up again, feeling better (11 1⁄4 hours total). careless temp 36.6 bp 139/73/58 careful temp 36.8 bp 133/78/56
Spent the afternoon in the Maypole, mind working well.
Headache about 1800, cleared up on its own after half an hour.
One thing that has occurred is that the ache in the legs may be the pain of Fibromyalgia. It feels like post-exercise fatigue to me, but I was a rower. I spent a lot of time learning that that feeling wasn’t pain, it was information. To someone not sporty, would it feel like agony? Also I had loads of joint pains that I was putting down to getting old, and sports injuries. I haven’t felt them for a while. I wonder if they will come back?
1959 Feeling feverish, vision blurry.
Sunday 27th March
Need to post something because I got a panicked e-mail from someone who’d read this far! (Sorry)
After that I was getting tireder and more lethargic, but fine in the evening. I did go to a cricket net and a choir session, and went out drinking a couple of times, so I thought it was basically OK. But in the morning I couldn’t be bothered to take readings or update this post. I do vaguely remember having made other posts on Less Wrong, and even a post on my own blog over the course of the week, and I went to see a terrific film that I enjoyed very much.
From what records I did keep I think I was consistently sleeping 13-14 hours/day, with a waking temperature of 36.7-36.8, i.e. not fallen at all, and feeling wearier and wearier, and less and less motivated, but consistently ‘coming alive’ in the evening and staying lively until midnight or beyond. I was also getting headaches and my stomach was upset.
On Friday I realised that I was in no state to drive, but I’d promised to go home for Easter. I swigged a double dose of the thyroid-stuff, and that evening I felt well enough to face the three hour drive.
Since then I’ve been taking 36mg/day of thyroid (150% of previous optimal dose), and I seem to be coming back to life.
When I get back to Cambridge I’ll try to make sense of what records I did keep.
Pre-registration of n=1 insane self-experiment.
Blood tests back, blood drawn at time of highest ‘manic episode’ (24th Feb), 24mg/desiccated thyroid/day.
TSH 2.31 [0.35-5.5]
Accursèd lab at Addenbrookes’ this time tested T4: 13.1 [10.0-19.8] but did not test T3, despite GP’s firm request for T4,T3 IRRESPECTIVE OF TSH
Perfectly consistent with thyroid dialling back to compensate for NDT, T3 level too high, T4 level too low, which was my prediction. I’d have expected T3 to be at the top or out of its normal range. Perfectly consistent with Ken Blanchard’s idea that NDT works well for a few weeks, then goes wrong due to T4 depletion.
But at the time of the test I was iron deficient. Serum iron level: 10.2 [14.0-31.3] Iron Saturation 15% [16.0-50.0]. Ferritin, CRP, Transferrin all fine.
That’s new and a complete surprise since I’m still taking the iron/vitamin B that helped in the first place, and it had put my iron bang in the middle of the normal ranges for the last tests. We tested because we were worried about iron overload!
My GP would like a look at my thyroid without interference, and he thinks that the NDT cannot have made any difference. He says it doesn’t matter whether I stop immediately, or taper sensibly.
So I’m going to stop it dead to maximise value-of-information.
I predict sudden horrible crash, followed by slow recovery.
He predicts I won’t notice.
I trust my GP. He is open-minded, thoughtful, clever and really cares about people.
It’s Friday 18th March 2016. Will stop sharp tomorrow and post results after a few days.
If I don’t notice, I think I’ve ruled out thyroid for myself.
If I do, I think I’ve got an endocrine problem of some sort.
Either way, where on earth has all that iron gone?
Sat 19th March
12:40, just woke up after 10 hours sleep,
temperature measured carelessly : 36.6, blood pressure 152/83/59
very careful measurements (takes 15mins sitting still so don’t normally bother) : 36.7 133/74/53
Feel absolutely fine
14:20 Feel fine, weird feeling that vision is blurry, but nothing I look at is actually blurred.
16:00 Still fine, blurryness as above
19:40 Still fine, blurry feeling still, starting to get sleepy.
20:40 urrrgh, sleepy, cycle home should be interesting. night!
22:20 sack hit, careless temp 36.7, bp 168/91/80
Sun 20th March
1140 woke up (13 1⁄2 hours sleep, somewhat fitful) careless temp 36.5, bp 153/87/65
very careful measurements 36.4, 127/72/54
Feel pretty good, blurry vision gone, but there’s an ache in my legs like I did quite a lot of exercise yesterday. I’m an ex-rower so I know what this feels like! I didn’t, I did my usual trivial 1-mile cycle to the office twice.
1440 made it to office, no harder than usual, blurry vision back.
1750 feeling of puffiness around eyes, blurry vision, tiredness. ache in legs gone
1900 sort of listless. trouble reading. slight feeling of fever.
2315 sleepy and a bit confused. heading for bed.
0020 sleep. careless temperature 36.5
Monday 21st March
0910 Woken up by attorney, phoning to see if I am OK. I am fine. Bouncy even. But not nearly ready to get up. Back to sleep.
careless temperature 36.1
1340 Wake up naturally, but lie around for a long time not wanting to get up. (12 1⁄2 hours solid sleep)
carelessly: 36.5C 135/85/62
carefully: 36.8C 132/77/54
1609 In Maypole with cup of coffee.
Vision blurry, but full of passionate intensity whilst simultaneously lacking all conviction
It seems that GP was correct, and there will be no sudden crash.
The Ethics Committee of the Insane Self-Experiment Research Foundation recommends that the experiment must continue.
With any luck, there’s nothing wrong with me at all. Maybe there never was. Maybe it’s got better! Alternatively, CFS may come back over the next few weeks, in which case I reckon I know how to fix it. Maybe the problem really is psychosomatic. In which case I wonder if I can use the old placebo, or if I’ve broken it and will have to think of a new one? Or maybe I’m a loony. That will be ok. I’ve been a loony all my life and I can deal.
0000 I feel fine. A little feverish perhaps, but very capable and enthusiastic, not CFSy at all. No ache in legs, no blurry vision. Heading for bed now.
0140 Finally to bed. careless temp 36.8 bp 156/94/74
Tue 22nd March
1040 Woke naturally after nine hours sleep.
careless temp 36.2 bp 141/87/61.
Made cup of tea. Realised after about 15 mins that I was shattered and went back to bed.
1300 Woke up again, feeling better (11 1⁄4 hours total).
careless temp 36.6 bp 139/73/58
careful temp 36.8 bp 133/78/56
Spent the afternoon in the Maypole, mind working well. Headache about 1800, cleared up on its own after half an hour.
One thing that has occurred is that the ache in the legs may be the pain of Fibromyalgia. It feels like post-exercise fatigue to me, but I was a rower. I spent a lot of time learning that that feeling wasn’t pain, it was information. To someone not sporty, would it feel like agony? Also I had loads of joint pains that I was putting down to getting old, and sports injuries. I haven’t felt them for a while. I wonder if they will come back?
1959 Feeling feverish, vision blurry.
Sunday 27th March
Need to post something because I got a panicked e-mail from someone who’d read this far! (Sorry) After that I was getting tireder and more lethargic, but fine in the evening. I did go to a cricket net and a choir session, and went out drinking a couple of times, so I thought it was basically OK. But in the morning I couldn’t be bothered to take readings or update this post. I do vaguely remember having made other posts on Less Wrong, and even a post on my own blog over the course of the week, and I went to see a terrific film that I enjoyed very much.
From what records I did keep I think I was consistently sleeping 13-14 hours/day, with a waking temperature of 36.7-36.8, i.e. not fallen at all, and feeling wearier and wearier, and less and less motivated, but consistently ‘coming alive’ in the evening and staying lively until midnight or beyond. I was also getting headaches and my stomach was upset.
On Friday I realised that I was in no state to drive, but I’d promised to go home for Easter. I swigged a double dose of the thyroid-stuff, and that evening I felt well enough to face the three hour drive.
Since then I’ve been taking 36mg/day of thyroid (150% of previous optimal dose), and I seem to be coming back to life.
When I get back to Cambridge I’ll try to make sense of what records I did keep.
Sorry if I frightened anyone (else).
Internal bleeding?
Is there any blood in your urine or excrements?
Not that I’ve noticed. Reminds me of the joke about the three mathematicians and the sheep.