I am rare and have endured, fought, and recovered from a long journey with Cushing’s Disease. Endogenous Cushing’s takes way to long for patients to be diagnosed; I believe I had symptoms for 15 years. I had always been a strong-willed, independent person always striving for another goal to meet, but I soon became a different person inside and out.
Symptoms began in 2002 – panic attacks, anxiety, bruising, skin tears, and infections. In 2008 I had a suspected Myocardial Infarction (heart attack). I went through menopause at age 46 in 2009. In 2012 I sustained a foot fracture while gardening, had surgery, and six weeks later ended up with a blood clot. Two years later I had surgery on the other foot for a stress fracture. I also gained weight gradually – my highest weight was 196lb in 2015. I went to a weight loss clinic and was put on phentermine and a high protein, low carb diet. I lost 64 lbs. I was also an avid road cyclist and upped my miles to 5000 in 2016, I was so determined to lose weight. I did not have striae, a buffalo hump, or diabetes, and only became hypertensive near the end of my journey. I used to be 5’9, I’m now 5’6. Even though there are hallmark symptoms of this disease, we all present differently.
Over the years I had appointments with several PCP/internal medicine doctors, Hematology, Orthopedics, Cardiology, Pain Management, \Physical Therapy, and Dermatology. I had to visit a Wound Clinic, and was in and out of the ER for infections. In 2017, my fifth dermatologist suspected Cushing’s and ordered a 24-hour cortisol urine test. This came back 10x the normal limit. I was referred to local Endocrinology and had further work up. I was then referred to a pituitary center. All labs pointed to a pituitary tumor, and I had surgery in February 2018 at the age of 54, then another in October 2021.
I have hypopituitarism now and am on Growth Hormone and Levothyroxine. This is a lifelong disease that needs to be monitored. I am so grateful for my prior and present pituitary teams. My current Pituitary Specialist is Dr. Kevin Yuen with Barrow Neurological Institute.
Recovery from Cushing’s is difficult. There were days that I screamed, because I was so tired of hurting. It took a good year to feel better. I am currently doing well and I’ll take what I can get at any given moment. I still have quality of life issues but a quote I see often and I do not know the author is “Maybe you’re not healing because you’re trying to be who you were before the trauma. That person doesn’t exist anymore, because there’s a new you trying to be born – breathe life into that person”.
Cushing’s Disease/Syndrome needs more awareness across all disciples of medicine. It is my goal to advocate for this disease. I am so thankful for Cushing’s Support and Research Foundation.