For years, Theresa Ingram mysteriously endured a slate of serious injuries. A slight bump sent her into the emergency room with a broken femur. A twisted ankle required more than a dozen screws, a rod and a plate to stabilize it. On top of that, she experienced unexplained weight gain, swelling and hair loss.
One doctor believed she had an autoimmune disease triggered by an implanted birth control device. She had a hysterectomy to remove the device, but the surgery failed to improve her condition.
No matter where she turned for answers, she came up empty.
"Everybody kept saying there was nothing wrong with me, but I felt like I was dying — emotionally and physically," says Theresa, who lives in Minooka, Illinois.
Theresa struggled for six years until she connected with Irina Bancos, M.D., and Jamie Van Gompel, M.D., specialists in endocrinology and neurologic surgery, respectively, at Mayo Clinic. Through bloodwork and a urine sample, they ultimately identified the culprit: Cushing disease.
Cushing disease is caused by a noncancerous tumor of the pituitary gland, located at the base of the brain, that produces an excess amount of adrenocorticotropic hormone, which in turn stimulates the adrenal glands to make more cortisol, or hydrocortisone. Cortisone is an essential hormone that affects nearly all of the body's organs and tissues. Excessive amounts often result in a rounded face, a fatty hump between the shoulders, and pink or purple stretch marks.
"It's maddening because people will eat 200 calories a day and still gain weight. It drives them nuts," Dr. Van Gompel says. "We see a lot of people come in severely depressed from it."
Cushing disease, which occurs much more often in women than men, is a common form of Cushing syndrome. In Theresa's case, her condition necessitated surgery to remove the tumor.
The surgery was successful, but the recovery was painstaking — tougher, she says, than her hysterectomy. It took a year and a half for her to regrow her hair, lose weight and stop easily bruising.
The surgery has, however, helped with her brain fog and provided her with hope for the future.
"If you don't have Cushing disease and you have this surgery, it's a walk in the park — like having sinus surgery," Dr. Van Gompel explains. "But in her case, if we do our job right, it's like she's recovering from a drug addiction. She's used to having excessive amounts of cortisone in her system. Cortisone makes you feel good until you've had it around too long. Then what happens is you get stressed out and feel horrible and can't sleep."
Theresa's post-surgery symptoms were the result of glucocorticoid withdrawal syndrome. Little is known about glucocorticoid withdrawal syndrome, but since August 2019, there has been a prospective study at Mayo Clinic for patients undergoing treatment for Cushing syndrome, with a goal of developing effective interventions. Theresa was patient No. 4 who completed the study, which now numbers nearly 250 patients.
"It is because of volunteerism like this that we will soon be able to share the results of this study and share data on glucocorticoid withdrawal syndrome with physicians around the world taking care of patients with Cushing and patients dealing with this difficult disease," Dr. Bancos says.
Although her doctors consider Theresa cured, she still bears the trauma of autoimmune disease. Her hormone levels will always need to be monitored, and she is often afraid to exercise for fear that she will break a bone.
But her determination outweighed that fear this fall, when she resolved to run her first 5K. Theresa organized the run herself and used it to raise funds to support autoimmune research at Mayo Clinic, going door to door to solicit donations.
"Research takes money, and the least I can do is help other people," she says. "Dr. Bancos and Dr. Van Gompel were wonderful. They saved my life. They not only took great care of me — they also made sure that I knew there was a smile at the end of my roller coaster."