Fighting for My Cushing’s Diagnosis

You can tell a lot about a person within the first seven seconds of meeting them. I am a Cushing’s disease warrior.

Whew, now that that’s out of the way, allow me to delve deeper into what it means to be a warrior of this disease.

I’ve carried 179 pounds of shame and lived with a lost identity for three years. I’ve battled an impulsive rage that consumed every ounce of sanity I had left. I’ve faced countless nightmares that morphed into hallucinations after awaking nearly every hour of the night.

The onset of symptoms

My name is Brandy, and I was diagnosed with Cushing’s disease in October 2020. Cushing’s disease occurs when the body produces too much of the stress hormone cortisol. Additionally, I had a 5 mm pituitary tumor that secreted adrenocorticotropic hormone, which controls the production of cortisol, sending a friendly reminder to my adrenal glands that I needed more stress!

Jokes aside, this is what caused my Cushing’s disease.

Initially, I thought my metabolism was just catching up to me. I did my best to work out, ate healthy meals, and tried intermittent fasting, but none of it worked.

My symptoms were sneaky, appearing one by one in an orderly fashion. Irregular menstrual cycle? Check! Insomnia? Check!

It felt as though my body was plotting and planning against me: “Let’s make sure she gets incredibly irate when this insignificant thing happens to her!” I truly felt betrayed.

My face began to resemble a moon — so much so that my iPhone facial ID didn’t even recognize me. I gained 60 pounds, had a hump on the back of my neck, and would randomly bruise. I hit rock bottom when I saw a photo of myself. It done snatched my soul right out my body when I saw what I looked like! I knew something wasn’t right.

Testing and tenacity lead to Cushing’s diagnosis

I decided to keep track of all of my symptoms. I wrote down the hours that I woke up, documented how many naps I had to take during work, and tracked my menstrual cycles. Then I did some research. Surely all of my symptoms were connected, I thought. My search came down to two possibilities: polycystic ovary syndrome (PCOS) or Cushing’s disease.

Testing for PCOS didn’t show anything. And my doctor told me that a Cushing’s diagnosis would prompt more red flags in my bloodwork. Luckily, my white blood cell count was mysteriously high, so I was referred to a hematologist. The hematologist suspected inflammation, and recommended I see an endocrinologist.

Thankfully, the endocrinologist listened to my concerns, and my testing began. I spent eight months doing bloodwork and other various procedures, which led to the discovery of a 5 mm pituitary adenoma on my pituitary gland. I had the tumor removed with transsphenoidal surgery in November 2020. I am still in the process of verifying whether the surgery was 100% successful or not.

You can tell a lot about a person within the first seven seconds of meeting them, but it will take a lot longer to really understand them and their struggles. I may have spent eight months testing for Cushing’s, but Cushing’s was also testing me. It tested my patience, my character, my resilience, and so much more.

I am a Cushing’s warrior. Welcome to my new column, “Courageous in Cortisol.”

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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.