i am robert e. dean, jr. dr. lewis blevins, m.d., ucsf, pituitary expert, calls me "the dean of cushing's".
i used to be an over-the-road truck driver. i pulled tankers. in april, 1993-yes-april, 1993!!- i started having low back pain. i am a big man, so, i told my boss i needed a sabattical. you don't tell a truck line you need time off! so, i did, anyway.
i started working as a security guard. i got a textbook on endocrinology. i did this because my labs were normal. i was so weak i could not get out of bed. my blood pressure went up overnight. changes in my bones. i got so nervous one day i checked myself into the med's psych ward. er. i saw a psychiatrist. he looked at me and told me-"..this is not mental. this is physical..". i left er. i was put in touch with a psych resident. not him.
i had the pick on 2 endo m.d.s. the first called me and told me "..i saw you 17 years ago, and you were alright! i'm not going to see you..". nice, huh? can you believe this? i saw the second. he gave me a pee jug. "..pee in here for 24 hours. keep it refrigerated..". i did. i called him back. "..your cortisol is through the roof..". he put me in the hospital for 3 days. the 3rd. day he called me. "..your cortisols are sometimes high. i can't figure you out. i am letting you go home..". he never told me my labs. he never showed me my labs. he discharged me as a patient 2 months later!
i knew i had cushing's disease. i learned rule no. 1 for a patient: if you are highly intelligent-they will act very strangely around you! i was assessed with an iq of 170 as a teenager. doctors have called me on my cell phome. "..mr. dean-i can't see you any longer. you are the only patient i have who has cushing's..". they sent me certified letters letting me go! how many? let's see- 10 that i can think of right now new year's day at 6:56 in the morning! i know there must be at least 18.
i developed hyperparathyroidism as a result of losing so much calcium from my bones. 1st surgery showed no diseased gland. went to nih for 8 days. they thought i might have men1. they were wrong. came home. 2nd neck surgery for hyperparathyroidism. had to abort due to scar tissue. found a tumor on my pituitary gland may, 2003. with elevated urine cortisol. got terrified of brain surgery. chickened out. mainly because i was totally alone in a strange city! by myself! surgeon subsequently refused to operate on me! would you believe he had me drive and drive every 6 mos. in my old car "..for a repeat mri with contrast. to see if the tumor has grown..". what in this world!? how about the fact that i was dying of cushing's disease? would you believe this went on for 3 more years like this? i was dying! duh!
had pituitary surgery by another m.d. jan., 2006. 2 tumors were removed. "..mr. dean-you are not cured. you still have cushing's disease..". to top it off, i got a knot on my lower left jaw may, 2006. surgery showed it was high grade cancer! in my entire neck region. i went through 4 months of chemo. went to see a head and neck surgeon. had trouble with a drug an m.d. mistakenly gave me. this is another story!! had to go to er 5 times. went to see this surgeon. "..i can't operate on you! you have problems with x and have cushing's disease..". he turned around, and walked out of the room!! nice man-huh!
i found another surgeon. he did radical neck disection with pectoral flap. i awoke in i.c.u.! i now look like frankenstein! i am cured of cancer, though! had my entire left thyroid gland removed in may, 2009. hyperparathyroidism. blood pressure went up to 191/101! glucose went up to 311mg/dl!
went to ca. to see dr. dan kelly, m.d. this man, and dr. amin kassam, m.d., are the world's best neurosurgeons!! they removed my entire pituitary gland! i stayed in santa monica for a week. i got home with no endo m.d.! can you believe this? they had all abandoned me! had an elderly internal medicine m.d. for a doctor. he would not let me have injectable testosterone!! and, guess what? i am allergic to the topical testosterone! a 65 yr. old male with no testosterone!! "..robert, you can live without it! it is not essential for life..". i went 1 year with miniscule testosterone! or, no testosterone! after having cushing's disease for 18 years!! finally, i am on injectable testosterone! boy,
what a journey!! i would not wish this journey on a rat!!