Good to hear that you have no pit tumour.
As I said in a post lower down a raised ACTH and a low cortisol level points to either CAH or Addisons. Have they ever done a baseline testosterone level? You said that your DHEA was elevated, although not massively elevated.
From what you are saying "I can hardly stand on my feet for more than a minute or two before my whole body shakes and the fatigue is overwhelming" sounds like you are quite adrenally insufficient.
Depending on your doctors advice it sounds like there are two things to do: one is to have an ACTH stimulation test done asap and the other is to get you on corticosteroids as soon as the ACTH test is done.
Why is your endo hanging out on doing an ACTH test again? It's a good test which will lay some of the types of CAH to rest as long as he tests for the correct hormone responses. It would also diagnose or eliminate Addisons Disease.
