Question: I was diagnosed with Salt Wasting Congenital Adrenal Hyperplasia 27 years ago. I was given dexamethasone, and also clomid to make me ovulate. I bore a son, but had a touch and go pregnancy, the placenta hardly took over at 13 weeks, I had to have progesterone suppositories, and then it shut down in the last month and I had to have a C-section. I developed Cushings Syndrome, gained 80 pounds, have always had terrible hirsutism. Had a hysterectomy 12 years ago. Today, I cannot get any help. All of a sudden about 6 years ago, I lost 63 pounds, the hair got finer, and I got healthier. But NOW, I keep having fainting spells, dehydration episodes with low BP (80/57, etc.) and my aldosterone levels are THREE. Over the last year and a half, my aldosterone, ACTH and 17-hydrozyprogesterone have all dropped slowly. I am now losing weight even though I am not trying, and don't feel good most of the time. I am taking lots of sea salt, and everyday I take Quinton's Marine Plasma to keep from another dehydration and low BP episode. But the endo I see (I can only get in every 6 - 8 months) says nothing is wrong, because my cortisol is on the HIGH end, so i CAN'T have CAH. SOmething is terribly wrong. Very low aldosterone, and these episodes. Could it be there is really something else wrong with me and not the CAH I was diagnosed with all those years ago?? One thing to add - I had an MRI about 20 years ago that showed a cyst on my hypothalamus, but nobody seemed concerned. Could that be causing all of this???

My CBC is normal, I do not know what CMP is and can't find it on any test results I have here. My thyroid has been checked twice in the last 6 months and is all within the normal ranges. Prolactin has not been checked.

I have not been on Dexamethasone for 17 years. I haven't even been stress dosed with it, although I asked them to when I had my recent colonoscopy and within a week, I was throwing up (32 times) and had diarrhea and ended up in the ER dehydrated and low blood pressure. The last measure of my cortisol was 60, and the high range was 50. She did a Des Suppression test and 'said' it turned out normal. My ACTH is 3 in a range of 0 - 30. My ACTH is on less than 5 (that is how is read, no exact number).I have had numerous CT and MRI scans in the past, my first endocrinologist in the 1980's did a lot of imaging, and ruled out any kind of tumor, but diagnosed me with Salt Wasting Congenital Adrenal Hyperplasia. I don't understand why my cortisol is on the high end and why the aldosterone is so low and I keep getting dehydrated and faint. Can aldosterone be low but not cortisol in CAH??
Thank you.