home      About the CSRF Mission Board of Directors Medical Advisory Board Conference Reports Public Awareness In the media You can help! News and Events Our Sponsors Memberships and Donations Email Us About Cushing's The Basics Fact Sheet Testing Glossary Adrenal cancer Pedriatic Cushing's Current Research Other Resources Cushing's Doctors Endocrinologists Neurosurgeons International Laporscopic Adrenal Surgeons For Medical Professionals Coping with Cushing's Doctor's Articles Doctor's Answers Articles on Coping with Cushings Helpful Hints by Cushing’s Patients Patient Stories Patients to Contact Member Services Become A Member Main Area Update Your Profile Email Other members Coping with Cushings Doctor's Articles Doctor's Answers Articles on Coping with Cushings Helpful Hints by many CSRF members Patient Stories Patients to Contact Quick Links I think I have Cushing's Make a donation Join our mailing list Email Us Code: 866 Date: Fall, 2002 comment on this page | email this page | print friendly | Last September 18, was three years since my pituitary surgery. At first it was thought that I had Cushing's for about five years, but now I think it started in high school which was over twenty years ago! It's been a long road to recovery and I feel SO much better. I remember writing my first story in the middle of the night because I couldn't sleep, and I was sobbing as I wrote! I was really hurting then, and I've come a long way! After 2 ½ years of steroid weaning, my tests showed that I am producing only a trace of cortisol and almost no growth hormone. There is very little, if any, pituitary tissue remaining, so I will be on Cortef for life. I also take 88 mcgs of Levoxyl and .1 mgs of DDAVP every day. I will be in a Growth Hormone Study at Massachusetts General Hospital. I am excited to see if it makes a difference in how I feel. I would be interested in hearing from anyone who is on the Growth Hormone. How do you feel? Will the Growth Hormone help with weight loss? It's an expensive drug and my insurance only covers 60%. I am still very tired and get overwhelmed easily. It's a day-to-day life now and I try not to overdo and stay within my limits. I have three kids ages 12, 8, and 5 and have learned how to do a little at a time. What doesn't get done today, well maybe tomorrow! I have a hard time with clear thinking, concentration and memory. I seem to struggle with depression. I would rather not add any more medication to my list, so I try to deal with it. I am still struggling with my weight. I lost quite a bit but have gained some back. Any suggestions for weight loss would be appreciated! I have come a long way and never thought I would be dependent on medication for the rest of my life. I turned 40 last August! I have been fortunate to get to know some great people through CSRF. I found that Cushing's is a lonely disease and there's so much comfort in talking with others who KNOW how I feel. Thanks to all who have listened with such caring hearts!

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