My Diagnosis: Why Did I Stop Sleeping?

Around the time I became 30 years old, five years ago, I began to notice numerous changes in my physique. I had always had a slim face, but I would notice as I looked in the mirror that my face was gaining weight. Okay, I guess I’m becoming cheeky, I thought.

I also began putting on weight. My theory that my metabolism was slowing down was illogical. I tried to eat as healthily as I could, ran after my three kids almost every day, and still put on 40 pounds over the following year! It was really disturbing when someone ever inquired, “When is the baby coming?”

Other strange symptoms I experienced included hair loss, swollen back, and my neck becoming extremely swollen on one side. When I would wake up, various bruises would be on my body. The worst part was that I began to have trouble sleeping.

I used to wake up around 5:00 a.m. and, despite my best efforts, couldn’t fall back asleep. I started waking up around 3 a.m. and then 1:00 a.m. On certain days, I would genuinely stay awake all day. Nothing helped me stay asleep, despite my attempts with melatonin, sleeping apps, therapeutic oils, and even sleeping pills. My now-6, 7-, and 9-year-old children would inquire of me, “Mommy, why are you so tired?”

Looking for answers

I endured my symptoms for four years, feeling awful about my appearance and attempting to get answers from my doctors. I even underwent a sleep study to determine whether I had apnea. After conducting blood tests, my primary care physician eventually determined that I had hyperthyroidism. She also advised me to see an endocrinologist because my cortisone levels were high. My brother persuaded me to travel to Manhattan even though I reside in Brooklyn, and my daughter’s godmother, Joanne, learned about Minghao Liu, M.D., at Lenox Hill Hospital.\

Mary in May 2021 eight months after surgery.

I told Dr. Liu about all of my symptoms, and she said right away that it sounded like Cushing’s disease, which I had never heard of. However, I discovered that it is brought on by the pituitary gland tumor, which releases the hormone ACTH, which instructs the adrenal gland to overproduce the stress hormone cortisol. The high levels of cortisol in the blood are the cause of my symptoms, which included weight gain, insomnia, bruising, and prediabetes.

I needed an MRI and a dexamethasone suppression test, according to Dr. Liu, to confirm the diagnosis. It was as though my world stopped when she said I might require brain surgery. It was so frightful; after keeping myself together in her office, I immediately called my husband and started crying. My pituitary gland had a tumor, according to the MRI. I met with John Boockvar, M.D., my neurosurgeon at Lenox Hill, and he informed me that the surgery could be performed using an endoscope inserted through my nose. Although this was somewhat comforting, I was still scared and anxious. However, the surgery I had in September 2020 completely altered my life.

Feeling like myself again

I had to recover for a few weeks, but I feel so much better now. Until my body learns to produce the normal amount on its own, I must take steroids. But the transformation was astounding.

My body is returning to how it was after I lost 35 pounds. I don’t want to flee after taking a look in the mirror because I can once more make out my collarbone and my face is still the same. The fact that I can sleep is the best part! For years, I was never in bed when my husband woke up in the morning; by the time he got out of bed, I would have already been awake for five or six hours.

The pandemic period in particular was challenging and frustrating. But I was unable to give up. Even when people said it was just stress or old age, I knew there had to be more to it. Only you truly understand how you are feeling. I’m so happy I persisted in looking for solutions until I did.

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