Patient Stories

Nicole, a real patient.


Age: 26

Career: Client services representative for a bovine reproduction company

Medical History: Diagnosed with multiple syndromes, disorders, and diseases prior to the diagnosis of Cushing disease

Treatment History: Bilateral adrenalectomy, steroid replacement therapy

Nicole's Journey:

“I started going to the doctor every other week. I tried taking blood pressure medication. I tried going off birth control. I even tried taking phentermine to counteract the weight gain. Nothing helped. My weight continued to creep up and so did my blood pressure ...”

Nicole’s hypercortisolism story began over 10 years before she found a diagnosis and treatment—long before Nicole even realized there was anything wrong with her. Back then, Nicole was an extremely active teen who lived a healthy lifestyle. She took pride in her good eating habits, participated in numerous activities, and worked out regularly.

Things started to change for Nicole during her sophomore year in high school when her weight began to fluctuate—which was odd for her. She also developed severe asthma that seemed to come out of nowhere and began having episodes of depression. At the time, there always seemed to be a rational explanation for each new problem. Weight gain? Must be hormones. Depression? That’s just teen angst. To her doctors, friends, family—even to herself—these new symptoms were easy to explain away.

However, by the time Nicole went to college, her symptoms could no longer be ignored. She hit rock bottom with her depression. Her mood was so low she could hardly function. Her weight continued to shift drastically, and her menstrual cycle stopped completely. Doctors finally started paying attention, but they were convinced that Nicole had a very stubborn case of polycystic ovarian syndrome (PCOS), along with a poorly managed lifestyle. All the while, her symptoms continued to worsen, and she developed high blood pressure and high cholesterol.

At her annual gynecologic visit, Nicole's doctor noticed bruising and purple stretch marks all over her body. She thoughtfully listened as Nicole opened up about everything that had been going on. Alarmed, Nicole's doctor encouraged her to visit an experienced endocrinologist who had dealt with other tough cases.

The endocrinologist had a long wait list, but it was well worth the wait. During her first appointment, the endocrinologist told Nicole she believed that elevated levels of cortisol, also known as hypercortisolism or Cushing syndrome, was the underlying cause of the symptoms she was experiencing. A test soon confirmed Nicole's cortisol levels were higher than they should be. At long last, Nicole knew what was wrong with her and could take action.

Soon after the diagnosis, Nicole had a bilateral adrenalectomy. Her weight came off, her blood pressure went down, and her damaged muscles, bones, and organs began to heal. Nicole now faces a life of steroid dependency, but her life can finally begin again.

Everything I do is new. It’s like starting life over in a new body. I’m realizing that nothing will ever be the same again. I’m no expert—and I know I have a lifelong journey ahead of me where I will continue to learn every single day how to live all over again—but you know what? I get to be alive, and that’s the best part of my story.

– Nicole