I finally made it to my endo appt. I had to cancel it in Sept due to my dad's illness.
It was a very interesting appt. and she is suppose to be one of the tops in New England. Anyway she had alot of notes from the past 5 years and said in her opinion my original adrenal/thyroid problem was caused by some type of infection (viral or bacterial).
She was not at all happy that I had been on cortef for 3 years and said in most cases they only give that for very brief periods of time unless you have addisons which I don't. She was very interested in the flucuation of my TSH levels while being on the same dose of synthroid.
She feels now that I have been on the cortef for so long that it has actually suppressed my adrenal function so that when I have times of high stress or even minor stress my adrenals can't make what I need. So basically my adrenals can't keep up at all which is really what I suspected.
Right now she had cut my thyroid to one pill ( I was taking 1 and half) and cut my cytomel down to one from two. Unfortunately she also told me it will take 2 or more years to wean off the cortef and it is going to be very unpleasant and uncomfortable. But in spite of that I am happy she is working on my huge exhaustion/fatigue problem which is probably now caused by the adrenal suppression.
So I want to warn everyone to be extremely careful if your doctor puts you on cortef. Only take it for a very short amount of time and a low dose. My original PCP warned me not to go on it but I was desperate and thought it was the right thing to do....
I will keep you all posted on my progress...
She also tested my Vitamin D level, Adrenal antibodies, TSH, Blood cortisol, and a few others. My TSH was undetectable which is why she feels I don't need the meds anymore.