Is My Cushing’s Returning? Tests Lead Me to Unexpected Answers

It’s common for Cushing’s patients to develop health anxiety. Every little thing that seems off in our bodies can trigger worry or panic. This might result in excessively searching the internet and creating worrisome scenarios in our minds before observing the facts.

I had a pituitary tumor removed in 2020, and since then I’ve been in remission. But for a while recently, I thought my body was undergoing changes that resembled Cushing’s, such as mood shifts and a tiny bit of weight gain in my midsection. I was so concerned that Cushing’s was coming back that I asked my endocrinologist for some bloodwork, a salivary cortisol test, and a 24-hour urine test.

My adrenocorticotropic hormone (ACTH) and cortisol came back slightly elevated. Once I got those blood results, I was positive Cushing’s was coming back. I took four midnight salivary cortisol tests and one 24-hour urine cortisol test. To my surprise, all five of these tests came back normal. If my cortisol was normal, why was my ACTH elevated?

I had so many questions. I researched and used my Facebook support group, where everyone said it sounded like the early stages of a recurrence.

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Finally, I was prescribed the dexamethasone suppression test. This test requires you to take the steroid at 11 p.m. (or whenever your doctor advises) and then get your blood drawn at 8 a.m. the next morning. The test indicates that Cushing’s is present if your cortisol does not suppress it. I picked up my tablet of dexamethasone, took it as directed, got my blood drawn the next day, and impatiently waited for my fate.

Negative. The test showed no presence of Cushing’s because both my ACTH and cortisol were suppressed.

What could possibly be going on? A few days later, I began developing shortness of breath, but I know that’s not a typical symptom of Cushing’s. I was still convinced that Cushing’s was creeping its way back into my life, so I went to an urgent care center. There, they did some bloodwork and even a test for blood clots.

Surprise!

I lay in the urgent care bed for what seemed like an eternity. Why couldn’t I breathe? The doctor slid through the door with an interesting facial expression, and I was so eager to hear what he had to say.

He started with, “All of your bloodwork looks very normal, but we did find something.” My palms grew warm with sweat, and my heart rate galloped like a herd of horses racing the wind. “Your pregnancy test came out positive.”

My hormones were out of whack because I was pregnant! I’ve always thought that Cushing’s would have a negative impact on my reproductive system, but we’ll talk about infertility and Cushing’s next time.

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.