Cushing’s survivor hopes to make others aware of illness
July 16, 2007
Denise Potter, who works at the Christus Schumpert Highland Hospital as a mammographer, has Cushing’s disease which affects the performance of the pituitary gland. Greg Pearson/The Times 07.12.07 (Greg Pearson/The Times)
Cushing’s Help and Support: http://www.cushings-help.com/
National Institutes of Health: http://endocrine.niddk.nih.gov/pubs/cushings/cushings.htm
Oregon Health & Science University: www.ohsupituitary.com/patients/print/cushings.html
By Mary Jimenez
maryjimenez@gannett.com
Denise Potter never connected her rapid weight gain to a disease or her high blood pressure to anything but her weight.
The hump on the base of her neck was a feature she supposed came with the weight.
And although the roundness and redness in her face was odd, she never connected it to the other symptoms she was having or the fatigue, heart palpitations and swelling she begin to experience in her 30s.
And neither did a stream of doctors over the decade when Potter’s symptoms related to Cushing’s disease began. It would take another two years after diagnosis to find a treatment that worked.
“You can see my face getting real round in this picture. They call that a ‘moon’ face,'” said Potter, 42, looking over a handful of photos that showed the progression of the disease, diagnosed when she was 37. “You learn one of the best ways to show doctors the changes happening is to bring pictures with you to appointments.”
Potter, who works as a mammographer at Christus Schumpert Highland Hospital in Shreveport, calls herself lucky to be working and functioning in life as well as she is.
“I only hope by telling my story someone else can be diagnosed sooner,” she said.
According to the National Institutes of Health, Cushing’s disease is a form of Cushing’s syndrome — caused by the overproduction of cortisol over a long period of time.
Cortisol is a hormone produced by the adrenal glands and essential to many of the body’s cardiovascular and metabolic functions. It also helps the body respond to stress.
Cushing’s disease is specifically caused by a hormone-producing tumor on the pituitary gland.
About 1,000 people each year in the U.S. are told they have a form of Cushing’s, but those affected think many more cases go undiagnosed.
“Making people aware of the disease is the name of the game,” said Louise Pace, founder and president of Cushing’s Support and Research Foundation Inc., based in Boston, Mass. “There’s a chance for 100 percent recovery if you get diagnosed soon enough. But not too many do. Out of the 1,000 members I have, only two are 100 percent cured and they both got diagnosed within a year. It took me five years. The longer you go, the more damage it does.”
In addition to feature changes, left undiagnosed the disease can cause associated diseases such as diabetes mellitus, hypertension and osteoporosis.
“It’s such a difficult disease to catch. It’s different from one patient to another. And for a lot of people it cycles. Doctors miss it unless they do particular tests,” said Warren Potter, Denise’s husband, whose gained a strong medical knowledge about the disease. “It’s amazing how much you learn about medicine when you have to.”
Warren Potter, originally from New Zealand, has lived in the states now for about eight years and met Denise online by chance while he was living in Tennessee.
He gives luck a large role in his wife’s diagnosis.
“At one stage she found a doctor who wasn’t too far out of medical school,” said Warren of the young doctor his wife went to in 2003 for her high blood pressure that would diagnose the disease.
“He was very worried about my blood pressure being 215 over 105 (a healthy adult is around 120/80) and began asking other questions,” said Potter, who’d also experienced an extreme, rapid weight gain. “I’d always been around 135 pounds but in my 30s my weight jumped up to 300 pounds. I knew my eating hadn’t changed enough for that much weight gain.”
Headaches and later migraines that Potter experienced throughout her life also began to make sense with a Cushing’s diagnosis. More than one eye doctor thought there might be something else going on there, but were looking on the brain not the pituitary gland where a tumor that causes Cushing’s disease sits.
A 24-hour urine collection was enough to prove that Potter’s cortisol levels were high, but not enough to pinpoint why.
Cushing’s syndrome can be caused by myriad of reasons, according to the National Institutes of Health.
A person who takes excessive amounts of steroids for inflammatory diseases or other reasons can suffer the symptoms of Cushing’s. Also a number of things can go wrong in the precise chain of events needed to produce cortisol.
It all starts with the hypothalamus that secretes corticotropin releasing hormone that tells the pituitary to produce adrenocorticotropin, which then stimulates the adrenal glands to produce cortisol that’s dumped into the bloodstream.
Potter’s tumor was confirmed with a magnetic resonance imaging of the pituitary.
The cure is surgical resection of the tumor, states the NIH, with about 80 percent success rate.
Potter’s first surgery done at Vanderbilt University Medical Center in Nashville, Tenn., failed as did another attempt to shrink it with radiation.
Potter and her husband took a bold step they both felt was her best chance for a cure.
“We moved to Oregon where the best specialist in the country was,” said Potter, who was treated by Dr. William Ludlam, an endocrinologist. “I liked him immediately. He thought maybe my first surgery hadn’t been done quite right and wanted to try it again.”
When a second surgery done at the Oregon Health and Science University also failed, Potter and her doctor made the decision to remove both her adrenal glands in 2005.
The surgery took away her body’s ability to produce cortisol, which is now replaced orally. She’s also taking other hormones that are no longer produced by a damaged pituitary.
“On the endocrine aspect it’s all guess work to the levels of medication that works to make her feel relatively normal. We learn to tweak it when she needs to,” Warren said. “We’re lucky in a lot of ways that the disease was caught in time. She did not get the cure from the tumor being removed and she has other symptoms, but they can be treated.”
The Potters moved to Shreveport late in 2005 to be closer to her parents. An endocrinologist follows her hormone replacement therapy.
“I’ve lost 70 pounds, but because my age and the length of years I had the disease, my recovery will be slower,” said Potter, who takes 10 pills and one injection daily to manage her hormones and diabetes. “It’s also caused some memory loss that I still can’t access.”
Potter and others affected by the disease think experts are underestimating the number of cases.
“I see people all the time that look they are walking around with similar symptoms as I use to have,” she said. “I hope this makes people more aware of the disease.”
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