Well, I'm flabbergasted!! I had TRH test in July last year and then had MRI brain scan in August to see if my pituitary gland is working properly. No follow up until October with a endo registrar who had no idea of the results and said he woud speak to the consultant and would write to me. Nothing.
Last night I checked on EMIS as my endo appointment has been cancelled twice this year and I was concerned about lack of monitoring. I have been having blood tests by the doctor who was trying to reduce my levo based on TSH test - I have been ignoring them and doing my own BH tests and have been taking Thiroyd since mid-March, with limited success.
The endo letter quite clearly states TRH stimulation test in July 2015 - sub-optimal TSH response < 0.05mU/I. Therefore TSH should not be used to guide thyroxine replacement.
Can you believe that!!! I don't know why I'm surprised!! Last blood test with nurse (annual thyroid monitoring at Drs), I asked what she was testing, she said TSH. I said don't bother as it tells you nothing and I'll buy my own blood tests. She got a bit shirty and said I don't need to do that and she can test FT4 and FT3 - she did that and the results were that FT3 was a bit low (although "normal" by their standards).
I am treating myself and seeing a functional health practioner with support. My Dr is aware that I am taking NDT (I have changed Dr, in the same practice) and that I am seeing a FHP. He has my BH results and whilst not enthusiastic, he has not said he will not monitor me. He is doing liver function tests and a ferritin test, based on what my FHP has said.
I don't know why I'm flabbergasted as I know that Drs don't read your notes before you see them and don't even look at you when you're talking to them.
I have now printed off a copy of this letter and highlighted the sentence and will take it with me to future Dr and endo appointments.
The lesson from this I would say, is check your medical records if you can. If I hadn't, I wouldn't be aware of this and would still be being guided by Dr based on the stupid TSH test!!!