Early Diagnosis of Pituitary Tumors Urged at Symposium

Growing up, Robert Knutzen had such large hands that his mother would try to hide them under the blanket for fear her first born would be stigmatized. At the recent "Family Hormonal Health Symposium on Pituitary Disorders" sponsored by the Office of Research on Women's Health, Knutzen shared his personal insight on living with acromegaly. A host of fellow patients and scientists showcased the difficulties of living with the disorder and called for earlier diagnosis of pituitary tumors.

"It is while the patient has every normal outward appearance that he or she needs to be diagnosed and have treatment started," declared Knutzen, co-founder and CEO of the Pituitary Tumor Network Association.

Speakers presented a broad review of the pituitary gland and the latest research. The pituitary is located on the surface of the brain. It plays an essential role in growth and receives input from the brain and the rest of the body. The gland then integrates information and responds by producing hormones to regulate other glands and bodily functions.

Robert Knutzen, co-founder and CEO of the Pituitary Tumor Network Association, shared his personal insight on living with acromegaly.

The most common cause of pituitary gland malfunction is tumors, generally benign. Such tumors occur in nearly 20 percent of adults worldwide. Unfortunately, many go undiagnosed or misdiagnosed for years. This is largely due to non-specific features of the disease that often mimic symptoms of other conditions and to lack of awareness in both the medical community and the public.

Dr. James Segars, a reproductive endocrinologist at NICHD, described multiple effects of a pituitary tumor on a young woman, including the trouble it can induce among a complex interaction involving hormones, the central nervous system and the ovaries.

Sharyn McGraw, patient advocate and leader of a pituitary tumor patient support group at the University of California at Los Angeles, shared her story of rapid changes brought on by such a tumor. At age 31, she gained 100 pounds within a year. One doctor diagnosed her as pre-diabetic with an eating disorder and prescribed more exercise and dieting. Meanwhile McGraw suffered anxiety and sleeplessness.

Dr. George Chrousos, chief of the Pediatric and Reproductive Endocrinology Branch, NICHD, discussed the impact of stress created by pituitary disorders that occur in childhood. Such stress explains many symptoms ranging from increased blood pressure to accumulating body fat, which potentially leads to anemia or hypertension among other conditions.

According to Dr. Shereen Ezzat, professor in the department of medicine at the University of Toronto, pituitary malfunction can cause headaches, loss of peripheral vision due to compression of the optic nerve and hormonal excess that affects heart and muscle. Pituitary problems can produce a litany of health complications from mood disorders, sexual dysfunction/infertility to accelerated heart disease.

Sharyn McGraw, patient advocate and leader of a pituitary tumor patient support group at the University of California at Los Angeles, discussed rapid changes brought on by a tumor.

With such wide-ranging impacts, screening and treatment options for the disorder are being developed. According to Dr. Sylvia Asa, professor of laboratory medicine and pathobiology at the University of Toronto, diagnosis would benefit if it included blood and urinary hormone levels and an MRI exam.

The most common therapy for a pituitary tumor is surgery. Other options include radiotherapy (using external beams or gamma knife) or medical management.

Patients at the symposium mentioned recurring themes: There is no cure for the disorder, but rather a lifetime management of the effects. Bram Levy's story began when he was 5. His initial treatment involved growth hormone. He had referred to himself as "Shorty" and noted being the shortest kid in all his classes through his early teens. Following growth hormone, his headaches continued unabated. "It took one doctor who happened to know that certain pieces of a puzzle fit together," Levy noted. That began a journey of multiple surgeries and treatment. Currently, he is taking testosterone and adult growth hormone among other medications.

"I don't consider myself cured," he said. "I believe it is possible to have a pituitary tumor and never be cured. I do consider myself managed."

Bram Levy recalled that his initial treatment involving growth hormone began a journey of multiple surgeries.

The future treatment of pituitary disease, according to Asa, will include identifying the cause of pituitary tumors to develop targeted therapies. Through the continued advocacy of patients and the medical community, there will be increased awareness, detection, early treatment and prevention of complications.

The full symposium is archived online at http://videocast.nih.gov.