The Cushing’s disease symptoms that creep in when I’m off my meds
I've been dealing with several challenging symptoms as I undergo testing
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Right now, I’m doing a round of Cushing’s disease testing. I was originally diagnosed in 2020, and two years after my first pituitary tumor was removed, I was diagnosed with a recurrence. It’s now been two years since I’ve done any testing, and my endocrinologist wants to do a spot check. That includes saliva, urine, and blood testing, as well as an MRI.
The testing process requires me to stop taking my medications for about a month and a half. Since I stopped them, several of my Cushing’s disease symptoms have started to creep back in.
Mental health
My mental health was the first thing affected, with my anxiety going through the roof. Because I’m only two months postpartum, I initially chalked it up to that. I refused to leave my daughter’s bedside in the neonatal intensive care unit and spent several nights waking up every six minutes to check if she was breathing. I also became severely depressed and hopeless.
After one particularly bad day when I felt so anxious I couldn’t even move, I remembered that I’d gone off my meds, and it hit me that Cushing’s disease was causing my mental health symptoms.
It was a relief to identify the source, and I’ve contacted a therapist to help get me through this difficult time.
Physical symptoms
A few of my symptoms are visible. My striae — the long, deep stretch marks all over my body — had faded to match my skin color. Now, they’re dark red and purple. My “buffalo hump” has grown larger, which is both annoying and uncomfortable, as it adds extra pressure to my back. And lastly, my skin has gotten much drier, so I’ve been using masks and Aquaphor to moisturize. Of course, it’s winter, and I’m in Michigan, but with Cushing’s disease, dry skin can become unmanageable, causing constant flaking.
The worst symptom is my wrist pain. It is so intense and painful that I have to stop everything I’m doing to ice the area. I get pain in my legs as well, but it’s not as severe as my wrist pain.
I also have insomnia, which is more annoying than anything. It can be difficult to fall asleep; some nights, I don’t crash until 4 or 5 a.m.
Lastly, my eyesight got worse immediately after stopping my meds. I can’t see anything at night, and I have visual snow throughout the day, which is basically little floaters and constant static.
None of these symptoms is new, but after an extended period of relief, experiencing them again so abruptly is challenging. I can’t wait to restart my medications.
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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