Key takeaways from my cyclic Cushing’s disease diagnosis

Throughout my Cushing’s disease journey, I’ve learned many skills that have helped me navigate the diagnosis and treatment processes. Among them are the importance of advocacy at doctor appointments, including helping physicians understand what I’m experiencing by documenting my symptoms.

I also had to learn which symptoms were associated with high and low cortisol levels in my body. This critical skill led to my diagnosis with cyclic Cushing’s disease at age 30.

According to the Cushing’s Support & Research Foundation, cyclic Cushing’s disease is the “presence of spontaneous, intermittent periods of cortisol excess that do not occur as a consequence of glucocorticoid therapy (such as prednisone, hydrocortisone or dexamethasone) or other medical intervention.”

To break it down, cyclic Cushing’s disease refers to recurring occasions when cortisol levels are abnormally high along with periods of normal or occasionally low cortisol levels. Because of this, cyclic Cushing’s disease is very difficult to diagnose.

Eventually, however, I was diagnosed, and then had pituitary surgery to remove a 3 mm tumor.

Below I’ll share some symptoms I experienced when my cortisol levels were both high and low, as well as the testing I underwent to reach a diagnosis.

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What the highs and lows of Cushing’s disease look like for me

My symptoms of high and low cortisol

Several indicators alerted me to when my cortisol levels were high. The first was when my buffalo hump (a fat pad on the base of the neck) grew larger and firmer. I could run my hands down the back of my neck and feel it.

The next was when the striae (stretch marks) on my abdomen, breasts, and the back of my arms became a darker shade of pink or purple.

Another sign of high cortisol was when my face and eyes became swollen and round, yet I had little or no pain.

All of these symptoms, taken together, were clues that I should test my cortisol.

Conversely, my low cortisol levels had the opposite effect on my symptoms. My buffalo hump became significantly smaller or nonexistent. My body hurt, and I felt absolutely exhausted. My face wasn’t nearly as swollen, and my striae were faded.

Throughout these cycles, I became very in tune with my body. I could feel it switch from high cortisol to low cortisol over the course of a few hours, days, or weeks.

Testing

My doctor suspected I had cyclic Cushing’s disease, but he needed biochemical evidence. He had me do a multitude of tests to see if I was producing excess cortisol. I had countless early morning blood draws, eight 24-hour urine collections, and eight midnight salivary collections. I tested when I was experiencing symptoms of both high and low cortisol. Through it all, I showed concise pattern at each cortisol level.

After that testing was completed, I was sent for an MRI. From that, my doctor was able to identify the 3 mm tumor on my pituitary gland. I was sent for a consultation with a neurosurgeon, who wanted an inferior petrosal sinus sampling to confirm that the pituitary tumor was the cause of my Cushing’s disease. After that, I was scheduled to have the tumor surgically removed.

None of this happened quickly. Even with the right specialist, it still took a little over a year to figure everything out.

The most important lesson I can share is that if you feel something’s off, speak up and say something to your doctor. It’s important to advocate for yourself because you know your body better than anyone else. The journey might feel overwhelming at times, but I encourage you to keep moving forward. Your health is worth it.

Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Cushing’s.