Many years ago my mother eventually found a solution for her total immobility, weakness, tiredness, and brain fog. It was a thyroid problem. It had not shown up in blood tests.
She wrote the following:-
Myalgic Encephalomyelitis., M.E. to its sufferers.
The continuing story of a recovery
Dear Reader
I want to let you know about a new treatment I have had for my M.E. I had had diagnosed M.E. for 8 and a half years; this was diagnosed by four GPs and two Professors. I was 71 and felt I would be too old to appreciate it if I ever did get better !
I consulted a London Professor. After a few false starts he suggested that I had an URINE test for thyroid function. This test is, at present, only done in Holland.
The results showed very low readings for T3 and T4, though blood tests had never showed anything other than normal and I did not present as a thyroid case (attested to by all the doctors and the professors I had consulted.
My readings were :- T3 184 : - mean ref. value in urine 1400-2500
T4 309 : - mean ref. value in urine 1800--3000
I was prescribed Thyroxin and Tertroxin and, here is the amazing part, two hours after the first dose I felt the M.E symptoms roll away! That was at the end of October 2002 and I am still feeling perfectly normal,now18 months later. I had to get my strength back, of course, as I had had to use an electric buggy to get about, but I could soon walk and suffered only aching legs - not complete flop out and blank head.
The relief was extraordinary: I had got my life back. So I want to let the world know that this thyroid test is something worth trying. I am sure that I cannot be the only person to have 'normal' thyroid tests when they are not normal at all. T3 is not tested in the normal blood test, it is reckoned to be unnecessary if T4 is normal. T4 has to convert to T3: there can be plenty of T4 but if it's not converting, it's not doing its job.
Simonron, have you tried to see an autonomic specialist? Autonomic dysfunction seems fairly common in Long Covid. (I have autonomic dysfunction myself from a different cause.)
I have a vague memory that diogenes posted about urinary thyroid tests some considerable time ago.
Not meaning to put words into his mouth, but I think that kidney issues make it an unsatisfactory approach to testing - at least for thyroid hormones. But I hope he notices and is able to reply here.
I hate to point this out but the youngest of those links is 7 years old.
I wonder why most urine tests seem to have gone the way of the dodo. Even when they were available I never ordered one because I had no idea how to interpret the results and couldn't find any help on the subject anywhere.
Even the anti-aging docs of Dr H in Brussels don't do thyroid testing like that. I had a urine test when I first visted them in 2011, and they tested sex hormones, steroid hormones, and minerals, but not thyroid hormones. For that, they did the standard serum free's. FWIW!
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