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Theodore C. Friedman, M.D., Ph.D.Associate Professor of Medicine-UCLAChief, Division of Endocrinology, Molecular Medicine and MetabolismCharles R. Drew UniversityWhy are there so few Endocrinologists treating adults with pituitary problems/How to dealwith your doctorMAGIC Foundation Affected Adult Convention February 5, 2006
What do Endocrinologists treat? • Diabetes, diabetes, diabetes • Thyroid diseases • Lipid disorders • Reproductive Disorders? • Pituitary Disorders • Adrenal Disorders
Why are pituitary disorders hard to diagnose and treat? • Rare? • Testing can be difficult and is less than optimum • Can’t just do one test • Except for Acromegaly and growth hormone deficiency-little pharmaceutical backing • Patients are complex, careful history takes a lot of time • Hormones interact-adjusting one requires retesting others
How to find a pituitary doctor • Chat rooms • Other patients • Endocrine Society • http://www.endo-society.org/apps/FindAnEndo/index.cfm • Someone doing research or at least attending national meetings • Good listener • Helpful staff • May need to travel
What should you do? • You are the boss -if needed you can fire your doctor • Need to be the primary manager of your health care • But need to work with your doctor • Remember your doctor is (or should be) very busy. • Make his/her lives easier
Records • Need to keep good records-spreadsheets of values, with hard copies in a notebook • Get results of testing from your doctor after each visit • Need to be organized • Know your medications and doses • Know what medications you’ve tried in the past and if they helped • Have reports and films of imaging studies • Have dictations from other doctors
How to be a great patient • Don’t go off on tangents • Don’t be afraid to talk about “personal” issues (sex). He’s probably heard it all before • Don’t whine or threaten • Be courteous to staff • Take notes on what to do /Follow directions • But, ask questions if you don’t understand something • If you don’t like a treatment she suggests, say so and ask for alternatives.
Magic Foundation • Use and support the Magic Foundation-it’s a great resource.