Saturday, September 29, 2012

Dr. Barbara Craven, Johns Hopkins Pituitary Day

MEETING NOTES : Dr. Barbara Craven, Johns Hopkins Pituitary Day

Meeting Created:September 29, 2012, 10:49 AM


Cushing's, cyclical

started noticing problems early 1990s
1993 people told her she had a red face, 3 little kids
mood swings, depression
gaining weight
1997, Christmas, puffy face, tired, red face, no energy
internist, bloodwork
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.

Dr. Salvatori

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.

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