Here's my story: Last November I got a new job and started having (or maybe just noticing more) sleep problems. At first, I thought it was just that I was having a hard time adjusting to the schedule (6 am - 6:30 pm, 2 on, 2 off, 3 on, 3 off). After 6 months of trying everything to adjust (staying on a schedule even on days off, no stimulants afternoon, dark quiet bedroom,...)I was still having problems. I brought it up to my Dr. and he prescribed ambien. Too keep a long story as short as possible, as of today I've been treated for depression by my regular Dr. and a shrink (that's not it), did a sleep study which was "normal" (no apnea, restless leg, and so on) and finally ended up seeing an endo. The main reason I went was to find out why I have trouble sleeping, but I was also interested in getting a second opinion. I saw an endo 5 years ago to make sure I didn't have an adrenal disorder and not PCOS which my reg Dr. had diagnosed. I did an overnight dexamethasone test and that came back high enough for the endo to order another test: 24 hour cortisol in urine. I believe the results of that test were a little on the high side, but not high enough. He sent a letter saying he thought I had PCOS and nothing else, but now I am wondering if an adrenal disorder was overlooked and the endo I saw recently thought I might actually have congenital adrenal hyperplasia. So here are my full list of symptoms:
I started getting pubic hair when I was 4, grew quickly, and got my 1st period when I was 9 or 10 (possibly CAH or maybe cushing's), however I am taller than my mom and 2 sisters (unlike CAH or cushings, but could be genetic; my mom developed quickly also, but normally--no pubic hair at 4 years old!)
When I was about 1 year old I started getting sick alot, and to this day I still get numerous recurrent infections (sinus, ear, yeast, piercings that just never seem to heal), but no serious illness. (cushing's?)
As soon as I stopped growing up, I started growing out...When I was 11 or 12 I gained about 50 lbs in a year, no changed in diet or exercise and eventually became morbidly obese. At the same time my periods became irregular and eventually stopped all together; I also started growing facial hair which is now a full beard (not as thick as a man's, thank God!). I also have clitormegaly.
None of my tests (glucose, hemoglobin A1C, testosterone, cholesterol) for PCOS were really conclusive: either normal or on the high side of normal. An ultrasound of my ovaries showed they were normal--no cysts at all and not enlarged.
I lost about 100 lb after being diagnosed with PCOS by exercising and dietary changes, but I am always overweight though I exercise a lot and eat healthy. If I slip up a bit on exercise/diet, I rapidly gain weight.
And now I am sooo tired all the time, but cannot sleep. After more than a year of good sleep hygiene, 4 different (all useless) prescription sleeping pills, a couple of different antidepressants, and more Dr. vists than an otherwise healthy 24 year old should, have I still have sleep issues. I usually take a couple of antihistamine to help me fall a sleep, but after 2-4 hours I wake up and usually can't fall back asleep. When I wake up it feels like it is just time to be awake and I am ok for a couple of hours then I get very tired. I need 2 X15 mg of adderall and 3-4 cups of coffee in the morning to be alert and able to focus and remember things at work. Some days I feel like I can barely get up the stairs. I also started to have depression (sometimes I have to hide in the bathroom at work because I can't stop crying) in the last couple of months. My job is not the cause of all this. I like it, my boss, and coworkers.
I seem to have hot flashes every now and then and I am very intolerant of heat--once I get hot I have a hard time cooling down and I tend to sweat a lot, even after losing 100 lbs.
In my internet searching I have found alot about insomnia, constant tiredness, and depression being symptoms of cushing's, but not CAH. I can't really find much about symptoms of non-classical CAH other than virilism, salt-wasting, and ambiguous genitalia. If anyone has CAH I would appreciate if they would respond to this thread with any other symptoms. After reading about other people's problems getting diagnosed properly, it makes me worry that I might hear the "your results were abnormal, but not abnormal enough" response again. I really think I have some sort of adrenal/pituitary disorder, but it may be more subtle (but still ruining my life!) than the unignorable results Drs seem to need to make the diagnosis. I would greatly appreciate any advise or to hear about any similar experience.