1. Theodore C. Friedman, M.D., Ph.D. Associate Professor of Medicine-UCLA Chief, Division of Endocrinology, Molecular Medicine and Metabolism Charles R. Drew University Why are there so few Endocrinologists treating adults with pituitary problems/How to dealwith your doctor MAGIC Foundation Affected Adult Convention February 5, 2006

2. What do Endocrinologists treat? Diabetes, diabetes, diabetes Thyroid diseases Lipid disorders Reproductive Disorders? Pituitary Disorders Adrenal Disorders

3. 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

4. How to find a pituitary doctor Chat rooms Other patients Endocrine Society –http://www.endo- society.org/apps/FindAnEndo/index.cfmhttp://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

5. 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

6. 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

7. 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.

8. Magic Foundation Use and support the Magic Foundation-it ’ s a great resource.