Thousand Oaks man provides information on pituitary disease

Robert Knutzen The numbers reflect the size of the problem—one in five Americans, or 60 million people, have a pituitary disease, and most don't realize it, said Robert Knutzen of Thousand Oaks. Among the symptoms are headaches, mood swings, memory loss, eating disorders, weight gain, excessive hair growth, weakness in limbs and sexual dysfunction.

Knutzen has been working to educate doctors and patients about the common occurrence of pituitary tumors and hormonal disorders. Through his Pituitary Network Association, formed in 1992 shortly after he was diagnosed, Knutzen advises medical professionals and the public worldwide.

The pituitary gland is a peasized gland at the brain's base that sends signals to the thyroid, adrenal glands, ovaries and testes, directing them to produce hormones. Hormone imbalance may affect metabolism, blood pressure, sexuality, reproduction and other body functions, causing diabetes, obesity, osteoporosis, depression, infertility and an impaired immune system. The diseases are often chronic and without treatment will shorten a patient's life. There's no cure, but treatment can control symptoms, Knutzen said.

After years of symptoms, Knutzen was diagnosed in 1990 with acromegaly, in which the pituitary gland produces excess growth hormones. His hands and feet grew; his mood was aggressive and then depressed. Doctors couldn't figure out what was wrong.

"All I heard was, oh, you're getting old, you have a stressful life, not all of us age the same way," Knutzen said. "So few doctors have that intellectual curiosity; too many see it as simplistic."

Knutzen was shocked to find no support group or information on his disease. He formed the Pituitary Network with several patients and doctors and began traveling to Germany, Australia, Italy, Switzerland, Denmark, Canada and all over the United States.

The network was first run out of Knutzen's home. Now five staff members coordinate from a Newbury Park office.

Network advisers include endocrinologists, pathologists, scientists, researchers and neurosurgeons, Knutzen said. The group organizes conferences, publishes information, raises money to support research, hosts a chat room-web forum for the pituitary community and assists in developing uniform standards for diagnosis, screening, surgery, radiation and treatment.

The best health centers have the resources to address pituitary illnesses, Knutzen said.

"Don't let anyone dismiss you; don't let anyone put you down, treat you with disinterest or disdain. Your life is too important for that," Knutzen said.

Linda Rio, a neighbor of Knutzen's and a marriage and family therapist in Camarillo, initially dismissed Knutzen.

"It just sounded too outlandish or inconceivable that I or any of my colleagues had never been taught any of this," Rio said.

After doing some research she confirmed everything Knutzen had told her.

"Many symptoms appear in mental health prior to physical symptoms coming out," Rio said. "We have a mandate to learn about this because we could come up with diagnoses much earlier or guide people through the process of getting diagnosis or treatment."

It can take years for a patient to be diagnosed, Rio said.

"The impact of an undiagnosed disorder on families is devastating. The connection is not obvious," Rio said. "As a result, by then they've lost jobs, had divorces, their kids hate them, they have no insurance, their lives are just devastated."

Knutzen is proud of informational conferences the organization holds at the National Institutes of Health and at the Naval Medical Center in Bethesda, Md.

"We have an incredible outreach worldwide where we are reached by doctors and patients from 127 different countries every month," Knutzen said.

He urges people who suspect they may have a pituitary ailment to visit www.pituitary.org. There they can try to identify their symptoms.

"Then I would talk it over with my general practitioner. If he's smart he will have absolutely certain answers that nothing is wrong or he will say, 'You know, this is not my field. Let me send you to a pituitary endocrinologist," Knutzen said. "I would not accept a physician telling me 'Don't worry, nothing's wrong.' That happens more than you know. That is the kiss of death, and you walk away from your doctor's office, and you find another one."