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Addison's Disease Message Board

Addison's Disease Board Index

My Mother has Addisons and it went undiagnosed for so long that she is extremely sick. I appear to be following in her footsteps. I was in a bad car accident and in a lot of pain for a year (migraines for 9 months straight) and it was found I had adrenal gland "fatigue". I realize most Endos HATE that term. I was on cortisteroids for my injuries and to help "support" my adrenal glands during the treatments for my injuries. After I started to heal I had a ACTH stim test done back then and my baseline was 11.3 and at 60 min I was at 24.1. They said that's good but lower than they would like but the Endos felt I was getting better. My daughter was born a year ago today and she weaned herself one month ago. I still feel like poo and am fatigued (although I sleep I don't really sleep well if that makes sense), weight loss, some skin darkening, nausea and generalized abdominal pain so the Dr decided to test them again to see what they look like. I have had several low DHEA tests and my cortisol level came back at 8 after fasting while doing routine panel (primarily thyroid check). All was normal except DHEA, cortisol and sodium. I have hypotension, came out of no where about 4 years ago and I have used medicine in the past to help. I am confused because of the mixed messages I received from the Nurse and I can't get back into the Dr for a month, she's booked out. The Nurse mentioned that to a lab it would be normal but that it also suggested Secondary Adrenal Insufficiency and given my history we may want to discuss it further. :confused:

My baseline was 8.9 (ref 9-26)
60 min it was 32.4 (same ref)

ACTH baseline was 16 (ref 5-27)

Bottom line, my Mom almost died because of an Addisonian crisis. Her blood glucose dropped to 23 and she had a seizure and it took months to get her up and at em after that. She is lucky to have a baseline while on cortisteroids of 2-4 and almost all of her hormones are nonexistent. This past year my 6 year old daughter has severe ketotic hypoglycemia and her cortisol levels "bounce" at night going up and down while she is sleeping causing her to get restless sleep.

I was not told to stop sodium for 24 hours before the test and honestly I should have longer given the fact I take it for my blood pressure. I am tired of feeling this way. After I was given the ACTH I felt wonderful the rest of the day I felt like I could function. I live off of any type of caffeine and my scars are darkening. I am displaying many signs of Addisons but not primary.

Does anyone have any suggestions? Should I seek out a Doctor that specializes in secondary AI? The fact that I responded so well to ACTH mean that it is normal or that it could be something going on? I just want to feel better, it's been a long time since I have felt like myself. I barely have the energy to do what I have to do day in and day out and my family deserves better than that. TIA

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