Strange Symptoms Lead to Diagnosis of Cushing’s Disease

Editor’s Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak with patients about opportunities related to their diagnosed conditions. These opportunities can include activities such as sharing stories with other patients or health professionals about their diagnosis journey or recording video testimonials. To learn more about how to get involved with an opportunity for Cushing’s disease patients, click here.

Angela Yawn, 49 years old, lives in Griffin Georgia. Angela told “TODAY” that she spent years struggling with continuous weight gain and a rapid heartbeat before she finally found a doctor who was able to diagnose her illness. After a series of unrelated symptoms and numerous doctor visits with no results, Angela began to doubt her sanity.

Over a period of six years, including periods of severe dieting, Angela gained 115 pounds. The seemingly unrelated symptoms were bruises that took months to subside, thinning of her skin causing constant sores, swelling of the joints, headaches, and hair loss. At times Angela’s face would turn red and appear sunburned. She felt continuously tired, depressed, and anxious. Angela’s main concern though was the round the clock rapid heartbeats.

At times Angela would only eat six hundred calories in one day, yet she still gained about two pounds every day. A doctor told her to exercise. Angela admits that when she looks at photos of herself at maximum weight, she is still embarrassed.

She visited a total of twelve different doctors. Angela was treated for congestive heart failure and high blood pressure but without success. Just as she began to lose all hope, Angela was referred to an endocrinologist in February of 2021.

At the first visit, the endocrinologist began listing Angela’s symptoms with no help from Angela who listened intently and agreed that she had every symptom.

An MRI and blood confirmed the doctor’s diagnosis. Angela had Cushing’s disease caused by a tumor in her pituitary gland. A small pea size tumor sat at the base of Angela’s brain. The gland was releasing an excessive amount of adrenocorticotropic hormone (ACTH).

ACTH is responsible for controlling the production of cortisol which is the product of adrenal glands. Cortisol is a steroid hormone released when a person senses danger or is experiencing stress.

Cortisol is involved with many of the body’s important functions such as stress, blood sugar, blood pressure, and metabolism, and also helps fight infections. Maintaining proper levels of cortisol may avoid serious health issues.

About Cushing Disease

Nelson Oyesiku, M.D. neurosurgery chair at UNC Health, North Carolina, removed Angela’s tumor. Dr. Oyesiku told TODAY that Angela’s body was producing six times the amount of cortisol it needed.

Cushing’s disease is extremely rare. It affects approximately five people out of one million annually. Therefore, most physicians may never come in contact with the disease. That also means that receiving an accurate diagnosis may take years.

Operating On the Pituitary Gland

Dr. Oyesiku, a highly skilled surgeon, removed Angela’s pituitary gland in September 2021. The operation lasted four hours. The pituitary gland, known as the “master gland,” is located four inches from the back of the nose, in the center space between the ears and the eyes. The location makes it extremely difficult to reach the gland.

Dr. Oyesiku cut deep inside Angela’s nose into the sinus cavity. He used a thin tube with a camera and light that allowed him to reach the small tumor. Dr. Oyesiku then removed the tumor, which was the size of a grain of rice.

The surgery carried a high risk, as the area surrounding the tumor contained vessels that transport blood to the brain. It is directly under optic nerves. An error can cause blindness or death.

About Angela’s Recovery

Patients’ recovery differs. Some patients may find their cortisol level will return to normal in months while others may take years to recover.

According to Dr. Oyesiku, Angela has lost forty-one pounds, and her weight continues to drop as the steroid effects recede. In fact, Angela’s body became so accustomed to the higher level of cortisol that in order to feel normal she had to take steroid supplements. She describes it as an addict experiencing withdrawal symptoms.

And in that regard, Angela will slowly taper off the steroids allowing her body to function without excess steroids.

Angela concluded the interview by saying that she hopes she can once again be the woman she had been in spirit, mind, and body.

Editor’s Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak with patients about opportunities related to their diagnosed conditions. These opportunities can include activities such as sharing stories with other patients or health professionals about their diagnosis journey or recording video testimonials. To learn more about how to get involved with an opportunity for Cushing’s disease patients, click here.

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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