Hello, all. Newbie here. I was diagnosed a few months ago. Not even sure what my exact diagnosis is. Endo just said that I have a form of adrenal hyperplasia, that it's a very rare form, that my body doesn't make the enzyme to break down cortisol.
After baseline labs showed elevated cortisol, testosterone, and dhea's or whatever... the doctor did the ACTH stimulation test, which were "grossly abnormal" according to my Endo. So we began treatment.
I was already on Metformin 500mg 2xday for PCOS (which my endo says was probably caused by the AH). She added to it Dexamethasone 0.5mg daily.
At first I felt much better, started getting periods regularly for the first time in my life. Facial hair started getting thinner and less hair came out in my hairbrush. However by month 4 I started to feel really crappy.
I've been moodier, gained 20 pounds, skin is dry and itchy, hairloss has gotten worse. facial hair has plateaued, energy is less, I actually feel weak...... and worst of all, I've been on my period for 8 weeks and counting!!!
I called endo and she said I needed to see GYN for it. As for the other complaints, endo told me I was on a very small dose of dex and couldn't be having symptoms it must be something else so I needed to see my GP. GP says see endo, it's her deal. GYN said same but agreed to help me stop the period. GYN put me on Aygestin 10mg daily, which should have stopped me from building up lining to bleed out. The bleeding has slowed but is still present and the cramps are horrendous now. It's a raw ache, like my body's trying to rip out something that isn't there. Like rubbing an open wound on your skin. Does that make any sense?
Anyway, after much complaining, my endo finally agreed to do labs. Just tested testosterone and dhea's. She called me back and my levels that she last described as "four times a man's normal level" are now "very low"... whatever that means. She cut the dex in half down to 0.25mg daily. Gyn doubled the Aygestin.... still I'm bleeding and cramping. Miserable, moody, snappy.
I'm new to this and irritated. In my mind, it makes since that if pcos is caused by CAH because the ovaries are sort of trying to maintain a normal hormonal ratio... keeping up with the elevated androgens from the adrenals.... then if my androgen levels are "very low" perhaps my ovaries are making very little hormones in an attempt to maintain these ratios. Low hormones, so my body's stuck in period mode. Anyway, this is my theory that I have kept to myself. Meanwhile, my endo acts like there's no way this could be from the dex.
What do I do now??? Has something like this ever happened to anyone? Does dex affect your periods at all? Please help.
