Undergoing tests for Cushing’s disease is necessary, but exhausting
A columnist describes facing two weeks of intensive testing
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Cushing’s disease testing can be complicated, especially if the disease is cyclic, as it is for me. This means that my pituitary tumors release excessive amounts of hormones occasionally instead of constantly, causing my cortisol levels to fluctuate.
Usually, testing is done for diagnostic purposes, but my doctor recently ordered more tests to check on my status. I was originally diagnosed with Cushing’s disease in 2020 and underwent transsphenoidal surgery to remove my pituitary tumor. I was one of the unlucky ones whose tumor returned, and I was diagnosed with a recurrence in 2022. At that point, I wasn’t a good surgical candidate, so my doctor and I decided to treat my Cushing’s medically.
However, I had to stop taking my Cushing’s medications during my pregnancy last year. Two weeks after my daughter was born on Nov. 25, my doctors confirmed that I could restart my treatment.
Now, in order to complete the testing, I’ve had to discontinue my meds again for two and a half weeks. This part is the absolute worst for me. My mental health immediately dips due to my increased cortisol levels, my body starts to ache, and I experience insomnia — which is super fun during the postpartum period when I’m already desperate for sleep.
The testing process is intensive, involving eight saliva tests (one every other day), two 24-hour urine tests (one per week), and one blood draw at 8 a.m.
A tedious routine
If doctors suspect Cushing’s, they’ll typically ask patients to perform two separate saliva tests on different nights. In my case, because cyclic Cushing’s can cause so much variation in cortisol levels, I have to do eight tests. I’ll put the swab in my mouth, avoiding my teeth, at some point between 11:30 p.m. and 12:30 a.m. I usually keep it in my mouth for at least 10 minutes to ensure it’s fully saturated. Then, I freeze the swab, and when I’ve completed all eight, I deliver them to Labcorp for analysis.
For the urine test, I discard my first urine sample at 8 a.m., then collect all the urine my body produces until 8 a.m. the next day. I keep it refrigerated and turn in my samples right after the 24-hour period ends. This one is a little more complicated because it involves a full day of collection, meaning I need to be home and near a fridge the entire time. It’s tedious.
Lastly, for blood work, I need to arrive at Labcorp around 7:30 a.m. to ensure that my blood is drawn around 8 a.m.
These tests coincide with a 3T pituitary MRI, which I’ve already completed. The technician noted that the scan showed two tumors, but my doctor and neurosurgeon still need to review it.
This process isn’t new to me, but it’s still a lot. I’m trying to balance my own health with caring for a premature baby who’s on oxygen and has a nasogastric tube. I’m also preparing to return to work after maternity leave. While this testing is important, it’s also draining, and being off my meds leaves me irritable and sad. I’m excited for this to be over so I can be more on my game.
You can also follow my journey on TikTok and YouTube.
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.
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