Bestie Saves Life With An Unexpected Acromegaly Diagnosis

It pays to have a friend who’s a research endrocrinologist—especially when you have a rare and little-known disease like acromegaly.

For Oregon-based teacher, Betsy Whispell, the friendship was a lifesaver. She had never heard of the condition and attributed the unusual growth of her hands, feet and face to aging. Her scientific friend provided her a more accurate diagnosis.

Acromegaly is a disorder caused by too much growth hormone (GH) in the body. Typically, the excess comes from benign tumors that have grown on the pituitary gland, which is responsible for GH production.

Acromegaly is most often diagnosed in middle-aged adults. It is treatable. But left unchecked, it can result in serious illness and even death as it increases the instance of type 2 diabetes, high blood pressure, cardiovascular disease, arthritis and precancerous colon polyps, according to the National Institute of Diabetes and Digestive and Kidney Diseases.

Like Whispell, people who suffer from acromegaly often have swelling of the hands and feet and gradual changes in facial features, such as along the brow and lower jawline. The increase in bone growth can impair or even damage nerves and cause carpal tunnel syndrome. The heart and other organs may enlarge as well.

Whispell was lucky that her friend astutely diagnosed her condition when she did. Testing revealed that her pituitary tumor was producing 10 times the normal amount of GH.

Because it affects so many aspects of health, many people with acromegaly don’t connect all the dots for 10 or more years. Instead, they may treat symptoms while not seeking medical attention for the true source of the disparate health issues.

Surgery relieved Whispell of her growth-causing pituitary tumor and a lot of the related pain. Although the swelling in her extremities was immediately reduced, the bone growth cannot be reversed. Still, she counts herself lucky.

For those of us not lucky enough to have a best friend who happens to be an endrocrine specialist, acromegaly may be diagnosed through blood tests, which reveal the level of GH, through a glucose tolerance test or by measuring IGF-I levels in the blood. An MRI is then required to scan and assess the size and location of the problem-causing tumor. As with Whispell, surgery is often an effective treatment. However, there are medical and radiation therapies available for those who have tumors that cannot be removed.