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Denise's Story...

I am only 29 years old ...

I cried when I found this site - so many who seem to understand! I have been sick for 5 years, getting progressively worse. I was originally told that I had Grave's Disease (thyroid) and went through the ablation and replacement process. Doctors guaranteed that this was my "problem" and I would feel 100% better. I waited and waited for this "cure" and nothing happened. So I went back to the doctor. I had gained 118 pounds over the 2 1/2 years I'd been complaining of feeling so bad, so I was diagnosed as "depressed" and my dr. put me on a radical diet. I lost an impressive 14 pounds. I kept saying that I was not depressed, and the only choice my doctor left me with was an open accusation that I was likely a hypochondriac. Promising, huh?

I changed doctors, changed endocrinologists and changed OB/GYNs. I was told over and over that I was clinically depressed and it was likely resultant of my (don't you LOVE this word?) obesity and altered body image. I pressed on, insisting that I WAS NOT (and AM not) depressed. I met open opposition when I said that I knew my body better than anyone, and was convinced that something was out of whack.

An endocrinologist finally said he believed I had PCOS and started me on glucophage. I had a laproscopic procedure done; no abnormalities. I had a single-dose dexamethasone suppression done and it was inconclusive (labs were drawn too late for definitive results). It couldn't be Cushing's. I was left with a diagnosis of "it looks like PCOS - you're obese so it's hard to tell." Glucophage and birth control pills did nothing.

I took my care into my own hands and began doing intensive research on different possibilities. Again and again I came back to Cushing's. I went to my PCP armed with reams of information and told him I was sick and needed his help, not another referral. He looked me square in the eye and said, "Let's start with a 72-hour urine collection." I wanted to cry.

The lab results came back - all 3 days showed high cortisol. He sent me to a new endocrinologist. She ran a battery of tests trying to rule out Cushing's ... and couldn't. My blood cortisol is high, potassium is low, calcium is outrageous, ACTH is high. I just finished the 48-hour dexamethasone suppression + 24-hour urine collection (just how many times do you have to pee in a bottle??????) + ACTH-injection test. I had a terrible reaction to the ACTH injection (flushing, erratic heart rate, short of breath, etc). The first labs began coming in the afternoon before Thanksgiving - the tests drove my potassium dangerously low. I asked if there was anything definitive and the nurse said, "Your labs are jacked. I don't want to say anything until the doctor has been able to review everything." Nothing like leaving me hanging, huh? I've been put on huge doses of potassium.

Signs and symptoms: round/red face, acne, buffalo hump, supraclavicular fat pads, truncal obesity (there's that word again), weight gain (obviously), stretch marks, excessive hair growth (seems to be developing into a beard), strange/unpredictable menses, EXTREME exhaustion, weakness, short of breath with any activity, significant memory loss and confusion, recurrent kidney stones, degenerative disk disease, highly susceptible to infection, insomnia (how is that possible, as tired as I am?????), incredible back pain.

My labs will be back next week. I am hopeful that the endo will be able to give me a diagnosis ... even if it is Cushing's. I truly, honestly NEED a name for this misery.

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