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Sean's Story

I am a 30 year old male (birthyear: 1972).

October 2002:

I developed stiffness in my legs, swollen ankles, and swollen feet.

November 2002:

My primary care physician informed me that my blood sugar levels were extremely high (over 400). He diagnosed me with diabetes.

I was experiencing fatigue, high blood sugar levels, insomnia, frequent nighttime urination, scaly skin on my face, infrequent bowel movements, a "moon face", and reduced facial hair growth.

December 2002:

In mid-December, my physician noticed that my potassium levels were low. He told me to take potassium supplements.

Throughout November and December, my glucose (blood sugar) levels were running high and they were going up and down in very unpredictable ways.

On December 19th, I saw an endocrinologist. I underwent blood tests and a urine test. The endocrinologist confirmed that my cortisol levels were far above normal.

January 2003:

On January 9th, there was a pain in the center of my spine. I was unable to bend over to tie my shoes. I called 911. An ambulance took me to the hospital.

In the hospital, I learned that I had a spinal compression fracture. Also, the doctors told me that I had osteoporosis. Apparently, the high levels of cortisol in my body had caused my bones to weaken.

I was hospitalized until January 18th.

During the hospitalization, I underwent blood tests, an MRI, a CT scan, and x-rays. Also, my endocrinologist put me on a drug called ketoconazole.

My endocrinologist's diagnosis was "ectopic Cushing's syndrome".

After running a scan on my chest, the doctor's suspected that my thymus gland was producing ACTH. They believed that the thymus was responsible for the ectopic Cushing's.

We scheduled surgery for January 29th. The plan was to use minimally invasive surgery to remove the thymus.

I returned home and waited for the 29th to arrive.

On 1/29, I was re-admitted to the hospital. My thymus gland was removed that same day.

The surgery was performed at Saint Vincent's hospital in Portland, Oregon. The surgeon was Doctor Michael Savitt. Dr. Savitt is employed by the Starr Wood Cardiac Group ( Dr Savitt used a minimally invasive procedure known as "robot-assisted surgery".

The "robotic surgery" procedure is described here.

The "robot" surgery equipment was from Intuitive Surgical (

After the surgery, my doctor prescribed Cortef (oral).

A week after surgery, my endocrinologist used a urine test to confirm that my cortisol levels had dropped to a normal level.

The endocrinologist stated that my December reading was 7500+ and my February reading was 9.

Some of my symptoms have started to disappear. The bruise marks have started to fade. The "moon face" has started to disappear as well. My glucose levels have become stable and I am taking much lower levels of insulin. I am regaining muscle strength in my arms and legs. The blemishes on my face have started to disappear. The "fat" around my abdomen has started to melt away.

I'll add more details later...

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