Myalgic Encephalomyelitis., M.E. a cure ?. Joy Anthony

Arnie Pye

Arnie Pye

Senior Member (Voting Rights)
This video is old. The interview it shows was recorded in 2003. But I did find it interesting. The type of testing involved is something I've never come across myself in this context.

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For those who don't want to watch the video, the answer is she had a urine test that showed what blood tests hadn't shown, that her thyroid wasn't working properly.
Her GP prescribed thyroxine. She says after just 2 hours of taking her first dose of thyroxine, her exhaustion just 'rolled away'.
 
Trish said:
For those who don't want to watch the video, the answer is she had a urine test that showed what blood tests hadn't shown, that her thyroid wasn't working properly.
Her GP prescribed thyroxine. She says after just 2 hours of taking her first dose of thyroxine, her exhaustion just 'rolled away'.
Click to expand...
So did she actually have hypothyroidism or Hashimotos etc rather than ME/CFS?
I get my thyroid hormones checked in my annual bloods, last year for the first time they became borderline.
 
She said the test was done in a small pilot study in Holland, I think. She also made it clear that she's not claiming this is a cure for ME, just that it worked for her. Given this was in 2003, her diagnosis may have been simply based on exhaustion, brain fog and significantly reduced capacity to function. She didn't mention any other ME symptoms I don't think.
 
Certainly it’s worth having your thyroid checked and especially women from middle-age are at risk of Hashimotos. I’m pretty sure in the UK it’s going to have been included in a full bloods panel if your GP has run one. As I say, I get one yearly anyway (good GP thought that as I wasn’t “getting anything from the NHS” a yearly update of bloods was something useful. Since then I’ve insisted on keeping going with it)
 
I'm afraid I'm skeptical of this story. Urine thyroid tests don't seem to be used at all, and are in fact recommended against, whereas blood thyroid tests are and have been for decades. Here's a paper in Dutch that concludes that 24-h urine tests for T3 and T4 are not accurate and cannot be used to diagnose hypothyroidism: https://pubmed.ncbi.nlm.nih.gov/18237046/ — it wouldn't surprise me if the patients in these case reports were also diagnosed based on tests from the Dutch laboratory mentioned in the video. Also the symptoms resolving straight away doesn't seem to fit with most people's experience of taking levothyroxine.
 
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I agree. It looks as if urinary thyroxine might have been of some use during pregnancy in the days before protein binding effects were taken into account but I cannot see any reference to them being useful in the last thirty years.
 
MrMagoo said:
So did she actually have hypothyroidism or Hashimotos etc rather than ME/CFS?
I get my thyroid hormones checked in my annual bloods, last year for the first time they became borderline.
Click to expand...

By modern blood tests I suspect she would not have been diagnosed as hypothyroid. Hashimoto's didn't get mentioned at all. But the urine tests she had done showed that she was excreting almost no thyroid hormones at all. Unfortunately I have absolutely no idea what results would be expected from someone in full health, or even in someone with overt or subclinical hypothyroidism.
 
Arnie Pye said:
But the urine tests she had done showed that she was excreting almost no thyroid hormones at all. Unfortunately I have absolutely no idea what results would be expected from someone in full health, or even in someone with overt or subclinical hypothyroidism.
Click to expand...
I doubt there was anything mysterious about this. There will be a well understood relation between blood free thyroxine and urinary thyroxine. The level for hypothyroidism (doctors tend not to bother with talking about 'Hashimoto's disease') will be lower than normal in proportion to the blood findings with various adjustments for volumes and protein binding.
 
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