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Leeben's Story

I am 52 years old, originally from South Africa. In 1982 had a comprehensive workup for Pheochromocytoma - could not find tumor anywhere (had high blood pressure, anxiety, irregular heartbeats etc).

In 2001, started gaining weight even though was dieting and working out. Noticed excessive hair loss, increased depression, anxiety, midline weight gain, severe sleep disturbances, swelling feet and hands, fast heartbeat, blood pressure high and low.

My heartbeat was so fast that I landed up in the ER several times. Was sent to a cardiologist who requested a chest x-ray. A shadow was found. I ordered a CT scan of chest with contrast. A suspicious lesion was found in upper right lung. Had a biopsy - carcinoid tumor. Had the whole upper lobe removed. Symptoms did not improve - only got worse. They were so severe that I finally had to leave work due to decreased mental acuity, extreme fatigue, napping all day, night turned to day and day into night, round face, red face, excessive sweating, more weight gain, aching joints, decreased ability to exercise and severe depression.

Since then I have had to go to several doctors. Pituitary MRI shows 7mm pituitary adenoma or Rathke's cyst with empty sella and very little remaining of the gland itself. Endocrine workup shows very low Growth Hormone, no testosterone, no estrogen (I had a total hysterectomy in 1992) and elevated serum cortisol, thyroid antibodies, enlarged neck lymph nodes and a tumor on my thyroid.

As of today, my lung tumor stained positive for ACTH - so I have Cushings from an ectopic source or from the low growth hormone. Had a thyroid biopsy which indicates papillary carcinoma...

I have a few more repeat cortisol tests (blood and urine) and then finally I hope to have a bottom line diagnosis and do what I have to do - operations and get my life back.

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