And It's About Time There Was Some Support For Cushing's!
I was first diagnosed with Cushing's disease in 1993 at the age of 14. For years prior, I had put putting on weight and my size 4 mother was convinced that I hid Oreo cookies under my bed. My pediatrician urged her to take me to weight watchers or consider a summer camp for overweight children. It wasn't until my mom noticed the purple stretch marks on my arms that she became concerned that I may have a medical problem. My pediatrician told her "not to waste her money" on an endocrine work up as my problems were likly caused by my diet. Despite his advice, I went to a pediatric endocrinologist who examined me from head to toe and asked me many questions. Everything she asked about I had: brusing, acne, exhaustion, facial hair, manstrual irregularities. She performed lots of bloodwork and a 24 hour dex suppression test. After all signs pointed to Cushing's I had an MRI of my braqin where they saw a visable tumor. My first surgery was in March of 1995 at age 15. Everything went as well as it could have. They removed the tumor, it stained positive for ACTH, and my cortisol after surgery was practically zero.
After the surgery I was on hormone replacement for about 6 months and then regained full pituitary function. Fast forward about 2 years. Out of no where every symptom of my cushing's returned. I was about to start college and I knew something was terribly wrong. After lots and lots of tests, I went off to school with full-blown cushings. I was so much sicker than I had been the first time and continued to gain weight every week. Over summer vacation I return back to the neurosurgeon and he once again operated on my pituitary gland. This time, however, he found no tumor.
Over the next year to follow I got sicker and sicker. I shattered bones and became extremely anemic due to my irregular menstrual cycle. All the while I continued going to college away from home and made Dean's List each semester. The summer after my Junior Year I was admitted into an NIH research study. While most of my friends were spending their summer on the beach, I spent mine with tubes in each arm, peeing in jugs to measure for cortisol. After about 3 weeks of tests, Dr. Ed Oldfield, cushing's surgeon extrraordinaire, believe that he could find and remove my tumor.
Brain surgery #3 took place in 1999. Dr. Oldfield did in fact locate my pituitary tumor in a section very close to the coratid artery. When my AM cortisol level was undetectable following this operation, he told me that he was fairly certain that I was cured. I ended up graduating college on time, magna cum laude.
Since then, I have lost 80 lbs, won a car on The Price is Right, was featured in Shape Magazine for my weight loss success story, (6/05) and got married.
Recently, my cortisol levels have been coming back high again. I have also put on about 15 lbs over the past few months. I'm completely freaking out because I fear I may be relapsing. I don't know what my next steps are other than to repeat some of the tests. If anyone out there has advice for me, I'd love to hear from you. I'm only 28 and would like to have a baby very soon. I can't let this disease take away any more of my life than it already has.
Recently, my cortisol levels have been coming back high again. I have also put on about 15 lbs over the past few months. I'm completely freaking out because I fear I may be relapsing. I don't know what my next steps are other than to repeat some of the tests. If anyone out there has advice for me, I'd love to hear from you. I'm only 28 and would like to have a baby very soon. I can't let this disease take away any more of my life than it already has.
After going through IVF, I gave birth to a beautiful, healthy, baby girl named Juliet on March 27, 2008. While my doctors were initially concerned about how my body would react to the pregnancy, those nine months turned out to be the best I've felt since I was diagnosed. My cortisol levels were actually in the low end of normal throughout my pregnancy, and I had tons of energy, didn't gain much weight, and had a "glow" radiated from within. I wish I could have stayed pregnant forever... Within weeks of me giving birth, my Cushing's symptoms reappeared. My breast miulk spontaneously dried up at around 6 weeks, I developed stretch marks on my abdomen, and my energy level dropped significantly. Also, I did not lose a ounce of my pregnancy weight despite strict diet and lots of exercise. My endo attributed all of the above symptoms to being a new mom. However, I believed that cortisol definitely played a part. My first UFC came back through the roof, about 8 weeks post partum. It was so high (>300 where normal was <35) that my endocrinologist thought it was a lab error. When I re-did the test the following week, it was still high, (66) but clearly not as bad as the last time.
I will update when I know more. I believe I have (and have always had) cyclical cushing's disease. As I've already had 3 surgeries, I'm pretty sure that I'm no longer a candidate for transphenoidal surgery. Radiation scares me as I would like to have more children. If anyone has any bright ideas for me please feel free to share. I wish you all the best in your search for good health!
