Five years ago, right around when I turned 30, I started noticing a lot of changes in my body. I’d always had a slim face, but I would look in the mirror and notice that my face was getting rounder. I was like, OK, I guess I’m getting cheeky!
I also started gaining weight. I figured my metabolism was slowing down, but that didn’t make sense. I worked out almost every day and ran around after my three kids; plus, I was trying to eat as healthily as I could, and I still gained 40 pounds over the next year! One time someone asked, “When is the baby coming?” and it was so upsetting.
There were a lot of other weird symptoms: My neck got really swollen on one side, I was losing my hair, and even my back was swollen. I would wake up and find random bruises on my body. But the worst thing was that I started to lose sleep.
At first I would wake up at 5:00 a.m. and couldn’t go back to sleep no matter how hard I tried. Then I was waking at 3:00 a.m., then 1:00 a.m. There were days I would literally be up for 24 hours. I tried melatonin, sleeping apps, special oils, and even sleeping pills, but nothing helped me stay asleep. My kids (now ages 6, 7, and 9) would ask me, “Mommy, why are you so tired?”
Everyone kept telling me it was probably stress or hormones, but I knew something was wrong. I felt as if I were suffocating in my own body.
Looking for answers
I lived with my symptoms for four years, feeling terrible about my body and trying to get answers at my checkups. I even went for a sleep study to see if I had apnea. My primary care doctor eventually ran blood tests and diagnosed me with hyperthyroidism, but she also told me my cortisone levels were high and recommended that I see an endocrinologist. I live in Brooklyn, but my brother convinced me to go into Manhattan, and my daughter’s godmother, Joanne, found out about Minghao Liu, M.D., at Lenox Hill Hospital.
When I described all my symptoms to Dr. Liu, she immediately said it sounded like Cushing’s disease, which I’d never heard of. But I learned that it is caused when a tumor on the pituitary gland secretes a hormone called ACTH that tells the adrenal gland to produce excessive amounts of the stress hormone cortisol. All that cortisol in the blood causes weight gain, insomnia, bruising, prediabetes, and the other symptoms I was experiencing.
Dr. Liu told me I would have to have a dexamethasone suppression test and an MRI to confirm the diagnosis. When she said I might need brain surgery, it was as if my heart dropped and my world stopped. It was so scary—I held it together in her office, but as soon as I left, I called my husband and broke down crying.
Mary in May 2021 eight months after surgery.
The MRI showed that there was a tumor on my pituitary gland. When I met with my neurosurgeon at Lenox Hill, John Boockvar, M.D., he told me the surgery could be done via an endoscope through my nose; that was a bit of a relief, but I was still scared and nervous. I had the surgery in September 2020, though, and it changed everything.
Feeling like myself again
It took me a few weeks to recover, but now I feel so much better. I have to take steroids until my body learns to produce the normal amount on its own. But the change has been amazing.
I’ve lost 35 pounds, and my body is going back to the way it was. I look in the mirror and don’t want to run away—I can see my collarbone again, and my face looks like it did before. The best thing is that I can sleep! My husband is amazed when he wakes up and finds me in bed, because for years I was never there—when he woke up in the morning, I would have already been up for five or six hours.
It was difficult and frustrating, especially during the pandemic. But I couldn’t give up. Even when people told me it was just age or stress, I knew it had to be something more. No one really knows what you’re feeling except you. I’m so glad I kept looking for answers until I found one.
This article originally appeared in the August 2021 issue of Prevention.
Read more medical mystery and misdiagnosis stories like this one in our column, My Diagnosis, which focuses on stories of real-life medical struggles and journeys to wellness. Have one you’d like to share? Write us at [email protected].
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