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The road to diagnosis and treatment for many people with hypercortisolism, or Cushing’s syndrome, can be challenging. Deile is living with Cushing’s syndrome and shares her journey to encourage and inspire people to advocate for their health.
Q: When did your symptoms begin?
It is very difficult to pinpoint exactly when symptoms began, but I started to experience consistent health issues in my mid-20s. I suddenly put on more than 100 pounds in a year without changing my diet or habits. The sudden weight gain was jarring, and I became consumed with dieting. The struggle to lose weight was a continuous cycle of frustration and defeat.
Q: Did you experience any other symptoms in addition to weight gain?
I experienced a number of other symptoms but didn’t know at the time that they might be related to Cushing’s. For example, I experienced negative, intrusive thoughts that were all-consuming at times, but I couldn’t pinpoint a specific worry. I often felt as though I was in a constant state of fight or flight, sometimes filled with fear or anxiety for no apparent reason. I also struggled with hypertension most of my adult life that at times was hard to control.
Q: What happened in the period of time between symptom onset and diagnosis?
I sought medical attention for many years, but the diagnoses never led to a treatment that helped and often I was dismissed or blamed for my weight. Determined to find a solution, I continued to advocate for myself. One day, a friend mentioned Cushing’s and that prompted a conversation with my doctor. I went to my doctor with a list of concerns, explaining that I suspected Cushing’s and requested testing. When the endocrinologist confirmed I had Cushing’s, he referred me to a disease specialist.
It took many years from when I first started experiencing symptoms to receiving the proper diagnosis, but I felt like I was finally on the right path.
Q: It has been several years since your diagnosis. How do you feel now?
It has been a very long and difficult process, but I’ve seen significant improvements in my symptoms, including a dramatic improvement in my weight and anxiety. I can breathe easier and get back to living my life – and that is what truly matters.
Q: What would you say to others who are struggling with symptoms?
First, talk to your doctor if you suspect it might be Cushing’s syndrome. Our bodies are complex, and you know yours better than anyone. Be patient with the process and advocate for yourself. Persistence, self-advocacy and leaning on your support network are key.
This article is the experience of one person and is not intended to represent medical advice. If you suspect you may have hypercortisolism or Cushing’s syndrome talk to your doctor.