MEETING NOTES : Dr. Barbara Craven, Johns Hopkins Pituitary Day
Meeting Created:September 29, 2012, 10:49 AM
Baltimore
Cushing's, cyclicaldieticianstarted noticing problems early 1990s1993 people told her she had a red face, 3 little kidsmood swings, depressiongaining weight1997, Christmas, puffy face, tired, red face, no energyinternist, bloodworkEpstein-barr virus high, mono.bone biopsy - rule out cancer. bones too soft, fractured hip in 2 places falling from horse1998, mole growing on back, removed. then more and more, every 2 weeks mole removed, all pre-cancerous, melanomaimmune system compromised2000, racing heart, aching in chest, cardiologist, testing for heart, beta blocker for BP2001, getting pudgier, weight increasing, tai kwondo, still couldn't lose weight. 800 calories per day, still gaining, shrunk, hair started falling outdermatologist, no problem. blood test. took cortisol and DHEAendocrinologist (not pituitary), dex suppression test positiveMRI of pit and adrenals.Dr. Salvatorihard to diagnose, 9 more months of testing, UFCs, blood, symptoms but not positive tests, salivary was positiveswollen feet, chest hurting, sleeping in recliner, memory became terrible, depressed, anxiety, panic attacks, miserable, couldn't fly due to anxiety. Agreed to surgeryremoved whole pituitary, only found soft spots. didn't find pituitary tumor. found 3mm ACTH tumorhormones still messed up even though in remission2006 feeling bettereven now hormones can get out of balance. DI. DDVAPsodium got low. stopped DDVAP. drink a lot of water now.stick with it, don't give up.Dr. Craven was our guest in the Guest Speakers Interview series.
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