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William's Story...

am age 41 and have had a lifelong history of testosterone deficiency. I have also had unusually red/tan coloring in my face for the past 20 years. An endocrinologist at a major clinic in Rochester, Minnesota discovered my low testosterone level 12 years ago and told me to learn to live with it. Other endocrinologists told me the same thing. I finally traveled to London, England. The endocrinologist there did the same blood tests but also checked my free testosterone. No doctor in the United States thought to check that. My free testosterone was severely below normal.

Five years ago, an infectious disease specialist investigating what turned out to be Lyme disease noticed my coloring. He tested me for Addison's and discovered that I actually had a mid-morning cortisol level at the upper limit of normal.

Two years ago, a dermatologist ruled out other causes of facial flushing and rechecked my ACTH and cortisol. Both were abnormally high.

Again I went to the well known clinic in Rochester, Minnesota. The endocrinologist there did a 24 hour urine collection on me and got a urine free cortisol (UFC) that was at the extreme upper limit of normal. She refused to investigate the cortisol issue further. She then checked my LH, FSH, and testosterone. My LH and FSH were at the bottom of the scale. My testosterone was almost undetectable. Based on that, she did an MRI to look for a pituitary tumor. She found a tumor but decided that it was probably nothing, so she refused to investigate it any further. She sent me home without a diagnosis or plans for further study.

An endocrinologist at a well known clinic in Portland, Oregon repeated the 24 hour urine collections and coordinated midnight blood draws through my local hospital. My UFC was abnormally high as were my midnight blood draws. He repeated the MRI and definitely saw the same tumor. He made a diagnosis of Cushing's.

had surgery in January 2004 in Portland. They removed half my pituitary gland, but my symptoms and lab results are virtually unchanged. An MRI taken in November 2004 showed what may be a fragment of a tumor that went undetected.

am now seeking other thoughts and opinions on this at the suggestion of my Portland endocrinologist. My endocrinologist suspects that the tumor alternates between active and inactive status. That would explain my cortisol surges and fluctuations. He thinks I may be alternating between Addison's and Cushings. Basically I appear to be a walking medical mystery.

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