Judy, it can be so very, very frustrating to be in diagnosis limbo. My GP and I have resolved my limbo by just ignoring the neuros who tried to take away my diagnosis. She keeps me in mestinon, and welcomes any research I can take her on MG, but the situation basically keeps me cut off from access to any other treatment than Mestinon. Fortunately, my MG is not terribly bad, and mestinon is sufficient for me. That and knowing how to pace myself. But I find that each year more and more things that I love to do have to be given up. I had no garden this past year, for the first time in over 30 years. Of course, recent gardens had become postage stamp size, but at least they were gardens. This last summer I couldn't even rise to the level of a flower-pot!
Just hang in there, and come and vent whenever you need to.
Why did they take your thyroid out? I had a partial thyroidectomy back in the 1960's, plus had a goiter removed. I had a super hyperactive thyroid! But they didn't take all of the thyroid, just enough to get the thyroid hormones down to a reasonable level. And what he left me was enough up until about 8-9 years ago, when I had to go on thyroid medication.
Hugs,