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.
Good luck to all of you, it is well worth a try !
-------------------------------------------------------------- from torty.org.uk/m-e-joy-anthon...
Since then the phone number shown in the link has stopped working.
My mother is now demented in a care home but had many years of a decent life due to her hard work.
I have been disabled by Long Covid since march 2020
My blood tests are fine.
I can't get a Urine test on the NHS.
I am scheduled to have my thyroid removed due to a tumour - possibly cancer
I just wonder if there is some sort of connection here.
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