Hi! Jumping in in the middle. I too, struggle with low adrenal fxning and was recently put back on low dose cortef. I carry solu-cortef and have a medical bracelet. Even though I only take 2.5 mg pm and 2.5 am, I have had adrenal crises in the past. I have to say though, that whether on dexamethasone or cortef, I don't feel any different. I just haven't had the crises when on the meds. Side effect is some weight gain. When I stopped cold turkey in the past (even from .5mg dex), when I got sick, I crashed... needed the ER. I have also been on more natural replacement, didn'[t work as well.
I was under the impression that whether on dex or cortef, you needed to be off of them for a while in order to have an adequate reading on an ACTH stim test. Of course dex stays in the system longer.... actually so I think folks might have it reversed (re: weaning to dex in order to test).
I was first (mis?) diagnosed with CAH (3 beta form), as was a friend of mine. Turned out the both of us had lyme, and docs have taken back the 3bHSD diagnosis.
I agree with you all, these posts remind me of how different we all are.
Also, the specialist/generalist topic. Specifically with Dr. H (as mentioned above), one should be going to an endo if s/he has these problems. That is where I ran into problems. Difficulty is, a LL endo is almost impossible to find! I am with a doc whom is more individualized now, and also did find a LL doc who specializes in endocrinology. What a process!
I hope that folks on low dose steroid are feeling better after reading this thread, we are not alone! So many lyme patients with endo issues, those are my primary issues..