OMG, but *sputter* please don't leave! Tell me more!!! What are your symptoms and how did you get a diagnosis? And by whom? (you can be general and just say specialty)

I am SO interested in learning more about HE, and mrsD is right, there's not a lot of people talking about it.

Here's my story, in brief. I've had Hashimoto's since high school, so for almost <cough> 30 ys. 9 ys ago, my "head blew up". Docs don't know why, but started having both central and peripheral nervous system problems, including two ER visits within a month, one of them status epilepticus, resulting in a combined 10 days in the hospital. No cause discovered (stroke and MS were ruled out), so treated for seizure disorder.

About 5 ys ago, I stumbled across HE when I had a symptom flare (moved, lots of stress, med changes by new *%#$@ docs) and it sounded so much like my symptoms; went to a Dr in a large city who did research on HE. He basically looked at how I was Right Then, which was mostly stable by the time I got in to see him, and said go home and come back if you're having problems. Grrr.

Ff to now. Moved again, low stress right now (months later), so low symptoms. NewEndocrinologist wants me to go off of cortef, which I take for adrenal insufficiency (diagnosed 8.5 ys ago during the initial mess). I pointed out that I felt SO much better once I was on cortef (actually, they put me on solumedrol in the hospital, and my severe neurological symptoms including loss of balance and 6th nerve palsy resolved); trying to go off it had, in the past, initiated a return of neurological symptoms.... NewEndo pointed out that it's possible that, because of my various autoimmune antibodies, the cortef helps me by "masking" autoimmune problems (since it's also anti-inflammatory). I mentioned HE. He said that HE is a dubious thing. Yes, Hashimoto's patients have TPO antibodies; yes, Hashi patients have neurological problems; but evidence that TPO abs correlate with symptomology is absent, therefore he considers HE to be suspect. Ooookay..... NewEndo DID hold off on taking me off cortef, however; he said to talk to my neuro (whom I see in two weeks), since it's possible that the cortef IS helping with neurological problems, if it's autoimmune...and leaving it up to my neuro. NewEndo said he was sending my neuro a letter stating exactly that.

I would LOVE to know your experience!!!! I'm pretty nervous about going off the cortef!