MEETING NOTES : Dr. Barbara Craven, Johns Hopkins Pituitary Day
Meeting Created:September 29, 2012, 10:49 AM
started noticing problems early 1990s
1993 people told her she had a red face, 3 little kids
mood swings, depression
1997, Christmas, puffy face, tired, red face, no energy
Epstein-barr virus high, mono.
bone biopsy - rule out cancer. bones too soft, fractured hip in 2 places falling from horse
1998, mole growing on back, removed. then more and more, every 2 weeks mole removed, all pre-cancerous, melanoma
immune system compromised
2000, racing heart, aching in chest, cardiologist, testing for heart, beta blocker for BP
2001, getting pudgier, weight increasing, tai kwondo, still couldn't lose weight. 800 calories per day, still gaining, shrunk, hair started falling out
dermatologist, no problem. blood test. took cortisol and DHEA
endocrinologist (not pituitary), dex suppression test positive
MRI of pit and adrenals.
hard to diagnose, 9 more months of testing, UFCs, blood, symptoms but not positive tests, salivary was positive
swollen feet, chest hurting, sleeping in recliner, memory became terrible,
depressed, anxiety, panic attacks, miserable, couldn't fly due to anxiety. Agreed to surgery
removed whole pituitary, only found soft spots. didn't find pituitary tumor. found 3mm ACTH tumor
hormones still messed up even though in remission
2006 feeling better
even now hormones can get out of balance. DI. DDVAP
sodium 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.