Hi my name is Liz and I underwent a laparoscopic adrenalectomy 5/9/12 to remove my 3cm tumor that was releasing high doses of cortisol causing cushings syndrome for what I believe has been about 3-5 years now.
I was diagnosed with PCOS about 5 years ago so everytime I went to a Dr. complaining of my symptoms they blamed it on the PCOS and stress and sent me home. I knew there was something else wrong, the symptoms didn’t add up, my face would get SO red it was embarassing, I would sweat through my clothes 2-3 times a day, my face became puffy, I would gain weight despite healthy eating and working out like crazy, I was anxious, depressed, I never slept, it didn’t add up.
Luckily I am a physician assistant and remembered learning about cushings briefly in school. I read that most tumors were in the pituitary gland so a year ago I convinced my Dr to let me get an MRI of my brain to look for this ‘tumor’ that I was sure was there. Well the MRI came back negative and I was ironically disappointed! I was so sure I had cushings but maybe I was just crazy? The symptoms continued to get worse and I just knew that I had cushings even though everyone told me I didnt because I was still petite and didnt ‘fit the picture’.
I had a colleague write a script for me to check my cortisol level and it was a whopping 56. I immediately called my endocrinologist and got more testing done that week. My ACTH level came back undetectable and I got an MRI of my adrenal gland done and suprise! There was my tumor. I am getting married in August and I am so happy that I got this miserable tumor out now so I can restart my life as a normal person. No one understands unless they have cushings the severity of the disease and how much it can change and effect your life.
I hope that people become more aware of the disease so it is no longer misdiagnosed and brushed off like mine was for so long. I am so frustrated with my Doctors and with myself for being so ignorant, I feel like I wasted a good portion of the best years of my life suffering with this tumor and I hope people read this and realize there is hope! Just 10 days out of surgery I feel like a whole new/better person. I am on oral hydrocortisone now until my pituitary and other adrenal gland wake back up and start producing cortisol on their own but even with the steroids I feel great, a lot of my symptoms have started to resolve since I am at a lower dose of steroids and I can’t wait to start tapering down and be completely off of them hopefully by my wedding.
I am so happy that I was proactive and never gave up looking for my tumor and I cant wait to restart my life 🙂