I had been on 150MG ptu for 9 months when my numbers improved so much my endo started withdrawing me. I sustained my numbers on 100mg but when I got to 50, they started to go out of range and by the 2nd blood test were way out of range. He put me back on 100, but since I was scheduled for decompression surgery of the eyes, he raised it to 150 again in May. My antibodies just came back as double were they were in Dec, though still 1/3 down from where they started. I did not notice any symptoms when I was down to 50mg, but fatigue. I had extreme fatigue all the time and would just dose off sometimes if I laid on the couch to read. But not what you describe. Are you taking anything else?
You have answered a question of mine, though, inadvertently, and that is how long to stay on the meds. I have now been on for over a year and my numbers, tho better are not what they should be. I know how hard it is to get to the right place even with RAI or thyroidectomy. I now the two latter procedures then bring years of the opposite problems and constant adjustments of the synthetic hormone. It is such a bummer.
My only hope is that I do know two people whose problem just disappeared with time and I am crossing my fingers that that will happen for me. Maybe for you, too…Lauraine
