This is a bit involved, but if anyone can manage to tough it out, I would be very grateful for comments and advice.
I owe my diagnosis to human bean, without whom I would probably have been as ill as I was when I first approached this forum four years ago. I was diagnosed by the nhs teaching hospital my go sent me to as having subclinical hyperthyroidism, and without human bean to point out that low tsh and t3 and t4 at bottom of range pointed instead to central hypothyroidism, I would have been stuffed. HB suggested Sheehan’s Syndrome, and I had indeed had a massive obstetric haemorrhage. I won’t go through all the steps in between, but after being rubbished by two nhs teaching hospitals altogether I was recommended to the nhs endo I see now- he saw me at his private practice first and then took me into his nhs practice. My nhs GP however refuses to issue prescriptions for the levothyroxine he prescribes for me. I still have to pay him privately to prescribe for me and I’m finding it very hard. A further problem has just emerged- I had an nhs endo consultation by phone (COVID), with another endo in his department (he is a leading consultant), and I completely failed to get any of my points across. She wrote to my GP surgery although I’d tried to explain that they won’t prescribe for me. The worst part though was that she ordered a blood test for me with the following result:
TSH <0.01 (0.27-4.2mlU/L)
T4 20.8 (10-23 pmol/L)
T3 7.5 (3.1-6.8 pmol/L)
I didn’t know this was even possible on T4 alone!
I was in hospital last November and they kindly did a T3 test for me although no T4, and the result was FT3 4 pmol/L (2.5-5.7 pmol/L). On both draws I was taking 75 mcgs of levothyroxine.
She has recommended reducing T4 and I am very unhappy with this. I am still miserably tired, cold, and my hair is half gone. Surely their results aren’t possible without extra T3?
Pearce CJ and Hemsworth RL BMJ 1984 888 693-95 Total and Free Thyroid Hormone etc., summarised by Dr Toft in his Counterblast thus:
‘It was difficult to increase T3 into the hyperthyroid range with LT4 unless serum free T4 concentrations were markedly elevated at around 35-40 pmol/L
How accurate are these tests? And what can I do about the whole mess?
With very many thanks to anyone who can bear to plod through this,