I started having noticeable Cushing's symptoms when I was 17 (2003) I started gaining weight and getting stretch marks. In the fall of 2004 when I moved away to college, I spent the first 3 weeks sick with Pneumonia. More weight gain, irregular periods, stretch marks, insomnia, kidney stones, shingles, fatigue, mood swings and muscle weakness followed for the next few years. In 2005, I came across an article about Cushing's and KNEW that was what I had. I had previously been diagnosed with PCOS and knew that didn't explain half of my symptoms. I saw 4 endocrinologists, including a neuro endocrinologist, and all told me I needed to treat my depression and lose weight. Some suggested weight loss drugs or bariatric surgery. I knew I was right and kept searching.
After 3 months of dysfunctional uterine bleeding, I saw an OB/GYN. She saw the rest of my chart and decided she wanted a brain MRI to look for issues with my pituitary gland. It was then that we found an adenoma, and I was referred to the NeuroEndocrine Clinic at Mass General. I was seen there for a year and a half, testing all the time, getting all normal/low normal cortisol levels. Finally, I saw a different doctor who decided that with my symptoms and normal tests, I should test every single day for a few weeks. We caught a high cycle and I was officially diagnosed! After looking at pictures, my endocrinologist thinks I showed signs of Cushing's as early as 200, when I was 13 years old. I think back then it was hard for someone to tell what was normal and what was not, because puberty can cause a lot of the things I was experiencing, including depression, weight fluctuation, acne, etc. It took years of progression before I realized something was not right.
I had an IPSS to confirm the pituitary adenoma as the source, and had my first pituitary surgery on December 16th, 2009. After a week of losing weight and feeling better, I suddenly had high blood pressure, swelling in my legs, more irritability, and weight gain. I was taken off the replacement steroid medication I was on, and started testing again. It took about a month to get another high test, and I am scheduled to have half of my pituitary gland removed on February 11th. I am looking forward to a cure this time! It has been a long journey but hopefully this will be my turning point.
Danielle will be interviewed in the Cushing's Help Podcast Series March 4th. More info here