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Heidi's Story...

On April 29, 1999, I gave birth to my first and (so far) only child. He was, and still is, a very healthy boy. After his birth I began aerobics 3-4 times a week for 1-2 hours at a time. I was never a very big person, and was determined to lose the pregnancy weight. I ate very healthy (I was breastfeeding) and was committed to the work out.

Around Christmas time my weight seemed to quit dropping. In fact, is was all I could do to maintain my current weight. Still a tad bit over weight, I began doing different workouts. I was eating only enough to keep the breastmilk flowing. I was scared that I had developed a weight problem during my pregnancy.

Regardless of the exercise, my legs began to get weak. My heart would continuously race, and my horrible headaches seemed to increase. I felt that there was something more wrong with me.......but I said nothing to no one hoping to over come it on my own.

I began to get bad acne, facial hair, and my face seemed to stay swollen. I was moody, and often experienced rage. I couldn't sleep well, and I was constantly sweating. I didn't feel like Heidi anymore.

Well, in Feb. 2000, I was feeling bad about myself, so I decided to get a hair cut and some styling. After the fact, I visited my mother (she is a Physician Assistant). It had been a few months since we had seen each other. I was complaining to her about the beautician insisting that I get my lip waxed. It had really embarrassed me.

My mother looked closely at me and said, "Heidi I wasn't going to say anything, but you look very different. You look like people with Cushing's disease."

"Huh," I said. And she explained it to me, and expressed that it most likely wasn't, but I should definitely look into it. So I set up an appointment with my PCP, and took my mother with me.

I started out with a 24 hour urine collection and some blood work. My 24 hour urine collection came back scoring almost 800, when the normal score range on that particular test was 50-100. The doctor called me on the phone and referred me to an Endo. I was diagnosed with Cushing's syndrome in Feb. 2000.

I went through numerous amounts of blood work, a 6 day urine collection with Dexamethasone the last few days. I went though 2 MRI's of the brain, a CT scan of the abdomen, an X-ray of the chest, and another CT of the chest. They were mostly clear all except a small nodule on my pituitary.

I finally switched to a pituitary specialist Endo. He read over all the tests and insisted that I have the Petrosal Sinus Sampling done. He felt strongly that the extra cortisol was being signaled by the pituitary, and that it was Cushing's Disease instead of Syndrome. My insurance wouldn't pay for me to have it done by the doctor he referred, so I found a local doctor who had performed it before, and under went the PSS.

The test was performed incorrectly, and was therefore inconclusive. It was August, and I was still not receiving any treatment. My cortisol levels were extremely high, and my body and health were changing drastically every week. I was very sick. My doctor put my on Ketoconazole to help slow down the cortisol. It is normally used for treating fungus, but studies have found, that it does stop the production of some hormones.

Still changing slowly, my doctor decided to send my paper work to the doctors at the NIH........the insurance would have no say in that matter. They accepted me. I was there the week before Thanksgiving. I was treated excellent, I had all my tests, and scans redone. Finally the MRI showed a tumor on my pituitary, and all the other tests targeted it towards the pit. It was definitely Cushing's Disease. They scheduled my surgery, and Dec. 3, 2000 I returned to the NIH. Dec. 4 I received Transphenoidal surgery. It was a complete success.

Today I am 5 months post-op, and 30 pounds lighter. I'm gaining back my strength, my face has gone down, and practically ALL of my Cushing's Symptoms are gone. The quality of life has improved tremendously. The Heidi I used to know has finally come home. I am so happy and so thankful to have my life back. I can now enjoy raising my 2 year old boy, and not worry with whether or not I'll live long enough to see him turn 3. I owe all my thanks to God, and the excellent doctors he sent me to for my cure.

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Heidi Newton