Patient stories

jenny image

Jenny

Age: 33

Family: Married for more than a decade with 2 young children

Career: History major and aspiring teacher

Medical History: Underactive thyroid, adrenal adenomas, pituitary adenoma

Treatment History: Thyroid nodule removal surgery, medication for symptoms; considering pituitary adenoma removal surgery

Jenny's Journey

“Getting the diagnosis was a double-edged sword. It was scary to know that I had a rare disease and nerve-racking to decide the best course of treatment. However, more than anything, I was so relieved to finally know that I wasn’t crazy, that I didn’t do this to myself.”

Jenny remembers looking in the mirror when she was younger, wondering why her stomach was so round and feeling concerned about the dark purple lines running across her belly. For much of her life, Jenny believed that her appearance was the result of being overweight. She was so perplexed and disturbed that she sometimes had nightmares that her stomach was going to burst open along her purple lines.

During her childhood, Jenny’s arms and legs stayed thin while her midsection grew larger. Throughout the years, her symptoms evolved, adding to her confusion. She noticed a round, slightly moonlike shape to her face and despite good eating and exercise habits, she gained weight excessively. Doctors told Jenny that her symptoms were due to a thyroid problem. For years, thyroid medication was the only treatment she received—with no results. She continued to visit different doctors, but none were able to help her.

Growing more frustrated, Jenny decided to take matters into her own hands. After learning everything she could about her symptoms, she discovered she might have a disease called hypercortisolism. She shared her concerns with her doctor, who determined that she should take a late-night salivary cortisol test, which is used to diagnose excess cortisol secretion. The results from the test came back positive. After all the years of struggling with symptoms, countless doctor appointments, and all of the unknowns, Jenny finally got the answer she was searching for. She was now armed with the knowledge she needed to find the actual cause of her symptoms and the source of her hypercortisolism.

"Educate yourself. At the end of many of my doctor appointments, I was asked if I had any questions. I would always say no even though I had a million. Perhaps if I had spoken up about the things I researched, the things I felt, the things I didn’t understand, my answers would have come sooner. It’s so important to ask questions and be involved. Do everything you can to research and learn, discuss it with your doctor, and advocate for yourself."

-Jenny