Community Voices

If your health condition was a college major, what classes would you take?

<p>If your health condition was a college major, what classes would you take?</p>
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Community Voices

Low cortisol and Endocrinologists

I’m posting this to see if I can get some helpful feedback. I’m trying to advocate for the best options to live my best possible life with adrenal insufficiency.

I switched endocrinologists about two years ago because the one I’d been seeing for almost 10 years had me taking 7.5 of prednisone at bedtime. I was often miserable on this schedule and each time the prescription was refilled I got a lecture for having taken extra. Still my complaints about not feeling well fell on deaf ears. (I now understand we stayed with that endocrinologist far too long.) Once I started seeing the new endocrinologist she immediately switched me to hydrocortisone during the day. It was a DIFFICULT switch and my body kept trying to crisis during the night. At some point during the transition my dose was up to 60+mg of hydrocortisone. Sometimes it felt like I was narrowly avoiding hospitalization still.
I was also started on Fludrocortisone, but so far can only tolerate half of a .1 tablet every other day or my blood pressure gets way too high.
For the last year I’ve been regularly meeting with a physicians assistantthrough the endocrinologist office and she’s been trying to help me work on a plan to taper my maintenance dose to something more sustainable. I’m currently taking 15mg @ 5:00 am, 10mg at noon , 10mg @ 6:00 pm. I’ve probably been on this particular schedule for a month or more and I’m starting to feel pretty crummy mid morning and late afternoon especially. I had labs drawn and my 9am cortisol was 1.6, and my ACTH was 158. The physicians assistant has recommended taking 5mg. from my 6PM dose and adding it at 9:00am. I am struggling to see how that will help me? I know this post is kind of long. I’m trying to decide what my next best advocacy step is? Thanks! #addisons #AdrenalInsufficiency