I Diagnosed Myself
I stepped out of the shower that January day in 2010 and grabbed the home pregnancy test I'd taken minutes earlier. It was positive -- and I was thrilled. I was nearly 30 and ready to take on the role of pregnant lady even though my boyfriend, Jesse, and I had our problems.
That instantaneous love for my unborn baby was about the last normal thing that happened in my pregnancy. Within a week I knew something was terribly wrong. First I had such bad nausea and cramping that my mother took me to the ER in Rochester, New York, near the small town where I live. The ER doctor said I just needed to sleep, drink lots of water, and wait for the morning sickness to pass. Mom hugged me tight. "It's going to be fine," she said, but I wasn't convinced. My body felt strangely heavy. "Mom," I said, "something's not right."
After ordering blood tests several days later, my family doctor said everything looked great. She told me I needed to stay calm, yet I got more and more anxious. Just five weeks into my pregnancy, my belly already bulged. My bones and joints hurt, my blood pressure was climbing and the fatigue and heaviness were escalating. This wasn't like me. I'm fit and active: A year earlier I'd run a marathon.
Then one morning in March, at six weeks pregnant, I noticed something weird: I had wide purple marks all over my body and I could see my veins through the tissue-thin skin. Stretch marks shouldn't appear that early, but my family doctor and ob-gyn couldn't come up with any other explanation. They were more concerned about my rising blood pressure, high blood sugar, and excessive weight gain.
At every step I pointed out my unusual symptoms to anyone who would listen. But even when other oddities cropped up, like the slight hump that developed between my shoulder blades, nobody believed there was a problem. Every expert was sure this was just an extreme, but normal, pregnancy. So I began to doubt myself. Who was I to argue?
Then I googled "abnormal stretch marks." And there it was: a picture of a woman whose body looked just like mine. She had a rare hormonal condition called Cushing's syndrome. Symptom after symptom matched. But when I brought it up, my doctors and nurses thought extreme pregnancy was still more likely than a seldom-seen disease. One nurse even scolded me for doing research online, saying, "That will scare any young mother."
My symptoms only got worse and I was hospitalized twice for complications, including high blood pressure and dehydration. I sought a second and third opinion, but nobody saw Cushing's. Finally, one night early in my eighth month, I felt so weak I could hardly walk. Somehow I managed to get into the car and drive to the ER. My blood pressure was so high that doctors were worried my baby wouldn't make it. This time they brought in an endocrinologist. Maybe it helped that this doctor was also eight months pregnant: The difference in our appearance was stark, and she confirmed that Cushing's was a possibility. That's when every doctor jumped into action. They induced labor mainly because of concern about my blood pressure. My beautiful baby, Sylvia, was born three and a half weeks premature.
With my baby safely out, I got a CAT scan. It showed that a tumor on my left adrenal gland had been causing all my problems. It was Cushing's. Doctors aren't sure why the benign tumor grew, but it's possible pregnancy triggered it. An endocrine surgeon took the diseased gland out two days after I gave birth. My other adrenal gland had shut down, so I began steroid-replacement therapy to keep my hormone levels from crashing. About two years later the remaining adrenal gland started functioning normally again, but my body is still disfigured and I haven't been able to lose much weight. Jesse and I didn't survive the strain of dealing with the disease and split up after Sylvia was born. I still don't feel comfortable in my own skin. But I'm so glad my daughter is here and she's healthy. I'd go through it all again for her.The Facts: Cushing's Syndrome
What it is: Overproduction of the stress hormone cortisol, usually from a tumor on the pituitary gland (at the base of the brain) or the adrenal glands (above the kidneys). Adrenal tumors are rarer, affecting only two to four people out of a million, but they're much more common in women than men.
Symptoms: Weight gain, fatigue, high blood pressure, high blood sugar, loss of emotional control, a round face, a fatty hump between the shoulders, stretch marks, and thin skin.
Treatment: Surgically removing tumors and sometimes glands. Replacement hormones may be needed if glands are taken out.
Info: National Endocrine and Metabolic Diseases Information Service, endocrine.niddk.nih.gov