What causes fainting spells, dehydration and low BP?
Sorry to learn about your medical problems.
I am sure you have extensive blood tests from your doctors but I would like to make sure your recent CBC and CMP are normal. Were they?
The next step is to ensure your thyroid is functioning fine. So have your TSH and free T4 been checked recently?
Thirdly, it would be relevant to check your blood Prolactin levels as an indirect marker of your potential hypothalamus/pituitary problem
And to clarify this: you are still on dexamethasone, correct?
You said your Endo mentioned that your cortisol was high. May I know the numerical value please?
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??
Consider getting your 'Cortisol Binding Globulin' also called CBG. Uncommonly, individuals have abnormalities of CBG that give falsely high or low serum cortisol values depending on the problem. For example if you have excess CBG, then your blood will test high for cortisol when actually your free cortisol levels are normal or even low.
Under the circumstances you seem to merit treatment with fludrocortisone. I suggest you seek an opinion at an academic center where the Endocrinology division has someone experienced in managing CAH.
CMP is just a routine lab panel that includes liver and kidney function tests along with electrolytes, calcium and glucose
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