LI woman fights Cushing's syndrome

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In the medical world, as in much of life, too much of a good thing can be troublesome -- something people with Cushing's syndrome know all too well.

Someone with Cushing's, a disorder caused by extended exposure to high levels of the hormone cortisol, may gain dozens of pounds and develop a wide range of problems, from depression and insomnia to high blood pressure and osteoporosis.

Lori Burkhoff of Great Neck knows this only too well. When she was about 14, she put on 60 pounds. Her doctor warned her mother that she was probably hiding cookies under her bed.


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She wasn't. It turned out that she had Cushing's syndrome.

Two decades and several surgeries later, Burkhoff, now 34 and a mother, hasn't shed the illness, which causes her weight to balloon (even if she sticks to a 500-calorie-a-day diet) and leads to other symptoms. But she hopes that her most recent surgery -- her fifth -- will bring her back to normal. In it, doctors removed her pituitary gland.

Through her website (crushingcushings .com), advocacy and an appearance on TV's "The Dr. Oz Show," Burkhoff is spreading the word about the condition and alerting people to the possibility that their doctors might miss a serious disorder and mistake it for obesity.

"My advice would be to be your own best advocate," she said. "Oftentimes, we know our bodies more than doctors do. If you think something is wrong and your doctor isn't listening to you, find another doctor."

Here's what you should know about this hormonal disorder:


1. Cushing's is a response to too much cortisol

Most people who develop Cushing's do so because they're taking drugs known as glucocorticoids to dampen their immune systems. These are steroids, though not the anabolic kind that bodybuilders use. Rather, the drugs -- such as prednisone -- treat conditions, like lupus and rheumatic arthritis, in which the immune system overreacts and starts attacking the body. They're also used to keep the body from rejecting a transplanted organ.

However, the drugs can induce Cushing's by exposing the body to a high level of cortisol, causing a wide variety of symptoms, said Dr. Alyson Myers, an endocrinologist with the North Shore-LIJ Health System in Manhasset. As the U.S. National Institutes of Health explains it, the drugs are chemically similar to naturally produced hormones.

Reducing the levels of the medication can essentially cure the condition, Myers said.


2. The body can make too much cortisol, too

In other cases, Cushing's develops not because of medication but because the body produces too much cortisol on its own. Certain types of tumors, for instance, can cause the adrenal gland to produce excessive amounts of cortisol.

"In the right amount, cortisol will keep your blood pressure in the right zone, regulate carbohydrates, proteins and fats, and control your response to stress," said Dr. Jeffrey Wheeler, an emergency physician at St. Charles Hospital in Port Jefferson who has treated people with Cushing's syndrome.

But if the adrenal gland releases too much cortisol or medication mimics the hormone, people may develop obesity (especially around their middle), a moon-type face, mood swings, depression, extreme swings in blood sugar levels, stretch marks, thinning skin and collections of fat around the rear of the neck, called "buffalo humps," Wheeler said.


3. Tricky to diagnose

Doctors often have a tough time diagnosing Cushing's because its symptoms can be caused by other conditions. "It's not a slam dunk for a physician," Wheeler said.

However, "central obesity, purplish stretch marks, depression, hypertension and glucose intolerance should send someone down that pathway," he said.

Myers noted that multiple tests are needed to confirm a diagnosis because the tests sometimes wrongly suggest that someone has the condition.


4. Surgical treatment

For Cushing's not caused by medication, "surgery is still the first-line therapy," Myers said. A surgeon may need to remove a tumor on the adrenal gland or the pituitary gland.

Some people become fearful because they believe that invasive brain surgery is required, said Wheeler. But, he said, "it's not as overwhelming as it's portrayed." Surgeons often use special tools to perform endoscopic surgery through the nose.


5. Side effects of new anti-cortisol drugs

"A few new classes of drugs have been approved for use in patients that are unable to undergo surgery or who still have elevated levels of cortisol despite having surgery," Myers said. She noted that last year the U.S. Food and Drug Administration approved two drugs -- pasireotide and mifepristone -- to reduce cortisol levels in the blood.

The problem, however, is that "the medications used to treat Cushing's have serious side effects," she said.

On the other hand, she said, not treating the disease raises the risk for heart disease, diabetes, blood clots and infections.

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