The Long Testing Process That Led to My Cushing’s Diagnosis

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by Brandy Moody |

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If you or a doctor suspect you have Cushing’s disease, what happens next? While the testing process can be lengthy, it’s worth the effort to find answers.

People often ask me about the diagnostic process on Instagram, so I decided to share my experience here.

If you’re struggling to obtain a diagnosis, I suggest putting together a series of photos, including dates, that show any changes in your body. Also, make sure to write down all of your symptoms, even if you think they’re unrelated.

My diagnostic journey

I mentioned in my previous column that a high white blood cell count was the main reason I began testing. Without this, my fight for a diagnosis would’ve taken far longer. After seeing a hematologist, I was referred to an endocrinologist, and that’s when the ball started rolling.

My endocrinologist first ran a complete blood count panel and tests to check the levels of my adrenocorticotropic (ACTH) and cortisol hormones. ACTH is made by the pituitary gland and controls the production of cortisol, which is made by the adrenal glands. Both my ACTH and cortisol levels were high.

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What I Learned During My Frustrating Journey to Diagnosis

Dexamethasone suppression test

The next step was a dexamethasone suppression test, which helps to confirm a Cushing’s diagnosis and indicate the source of cortisol overproduction.

Dexamethasone, a steroid medication, lowers ACTH levels, which should in turn lower cortisol levels. However, in people with Cushing’s, cortisol levels remain elevated.

Suppressed ACTH and elevated cortisol levels indicate Cushing’s syndrome, likely caused by an issue with the adrenal glands. When the dexamethasone doesn’t suppress either hormone, it indicates Cushing’s disease. This is a specific type of Cushing’s syndrome in which a pituitary adenoma causes the gland to produce too much ACTH, stimulating the adrenal glands to produce excess cortisol.

For this test, I took dexamethasone at 11 p.m. and had my blood drawn at 8 the next morning. Both my cortisol and ACTH levels remained high, indicating that I had Cushing’s disease.

I found a couple YouTube videos tremendously helpful when I was on my diagnostic journey. You can watch them here and here.

24-hour cortisol urine test

Because my bloodwork was consistent with Cushing’s, the next step was a 24-hour cortisol urine test, which measures the amount of cortisol in the urine over a 24-hour period. I had to keep the container of my urine refrigerated. I know that gives a whole new definition to “gross,” but we gotta do what we gotta do!

When the cortisol levels in my urine sample turned out to be high as well, a blanket of relief began to comfort me and soothe my anxiety. I was finally getting answers.

Pituitary MRI

Next was my MRI, which showed a 5-mm growth on my pituitary gland. This discovery kicked me into a new reality. I wasn’t crazy. I wasn’t obese due to a lack of exercise and healthy eating. I was sick.

Once doctors confirmed my pituitary adenoma, the question slipped out of my mouth faster than my brain could think it. “So, when can I have surgery?”

Unfortunately, my tests weren’t over.

Inferior petrosal sinus sampling

We had to ensure that the tumor on my pituitary gland was indeed the culprit, so doctors performed an inferior petrosal sinus sampling (IPSS) procedure. A what? Don’t worry, I’ll explain.

In simple terms, catheters are placed into the femoral veins at groin level, and snaked up into the main veins that drain the pituitary gland. During this process, doctors can take samples directly from the pituitary gland and test them for ACTH. This step was crucial because it confirmed the source of my Cushing’s.

When I found out what the test entailed, all I could say was, “Ooh child, ain’t no way! I don’t want anything snaking up anywhere!” But it sounded worse than it was. Although I was awake during the invasive procedure, I was heavily numbed so I didn’t feel it … too much. Be prepared to take the entire day off work, though.

The results were conclusive: I had Cushing’s disease. According to the IPSS results, my ACTH levels were 10 times higher than normal levels. It’s crazy that a mass the size of a pencil eraser tip can cause such an imbalance in the body.

I started testing in February 2020, received my diagnosis that October, and had surgery on Nov. 6. I’m so grateful for all of the work my doctors did to help me heal.

This journey taught me the importance of self-advocacy. You may face challenges that postpone your diagnosis, but nobody knows your body better than you do.

Make sure to subscribe to the Cushing’s Disease News newsletter to learn about my surgery experience in the next column!


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.

Comments

Deb avatar

Deb

This is such a great summary! I went through the same process, with the same result - I just never wrote it down. My initial testing was because of heart disease progression when I said WTF to my primary care doc. I asked her to add hormone testing too, and voila, high cortisol.

Reply
Richard Poulin avatar

Richard Poulin

The diagnostic journey was a challenge for my family as well. Rare Diseases uses a mascot of a zebra because of an old adage in the medical profession, “When you hear the sound of hooves, think horses, not zebras.” We were the zebra they were not expecting.

Reply
Sal Hussian avatar

Sal Hussian

Brandy, thank you for the summary. I also went through the same process. Reading your account brought back so many memories. Part of my journey involved the same self advocacy . After 7 years of accumulating symptoms (hair loss, weight gain, acne, muscle atrophy), I was entering my various symptoms into the computer and Cushings appeared. I was elated.
Thank you and take care!!

Reply
Lynne Conger avatar

Lynne Conger

Brandy- Thanks for sharing your journey and hope you are feeling better- I went through this process a few years ago and you laid out the steps and testing so clearly. Best!

Reply
Margot McBride avatar

Margot McBride

Excellent and simply written for readers to understand the methodology of diagnosing Cushing's. Having had both the syndrome and disease I know the pain both physical and psychological that this medical condition can inflict. I decided to study a PhD in Cushing syndrome which I have just completed and one of my recommendations was to increase awareness of this condition in healthcare professionals, particularly GPs in order to speed up the diagnosis. A simple dexamethasone test can identify the possibility of Cushing's diagnosis and should be recommended when 1 or more signs are present.

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