Acromegaly is a disorder that makes the pituitary gland produce too much growth hormone. It’s almost always caused by a pituitary tumor. Acromegaly is a rare condition, affecting about six in every one million people.
In children, it causes rapid growth, so kids become very tall. In adults, the symptoms are less obvious, and the disease usually is diagnosed incidentally.
Because acromegaly is uncommon and onset is slow in adults, it often isn’t diagnosed early or correctly. It may take years from the time hormone overproduction starts until the time the disorder is diagnosed, said Dr. Kent Ray, a Marshfield Clinic endocrinologist.
You may not know if you have acromegaly
Acromegaly is most often diagnosed around age 45. If you develop acromegaly as an adult, you don’t grow tall because your growth plates already are fused.
Instead, you might notice an enlarged jawbone, coarse facial features, thick skin and larger hands and feet. However, tissue overgrowth and effects on other hormones also cause chronic health conditions that are more likely to bring you to the doctor. People with acromegaly experience diabetes, sleep apnea, joint pain, carpal tunnel, irregular menstrual cycles and headaches.
“Most people say they don’t feel well. They’re achy and tired,” Ray said. “They may come to the doctor for a headache, symptoms of sleep apnea or carpal tunnel syndrome. The doctor, if suspicious of acromegaly, should perform serum tests before confirming the diagnosis with pituitary imaging.”
People who have acromegaly are more likely to be diagnosed with heart failure and colon cancer. Life expectancy decreases if the disorder is not treated.
Surgery is the best treatment
Removing the pituitary tumor through surgery is the most effective way to cure acromegaly. Surgery can cure a small tumor of less than 1 cm about 80 to 90 percent of the time. The cure rate may drop to 50 percent for larger tumors.
Medication is an alternative treatment for people not healthy enough to undergo surgery or if trying to remove the tumor will do more harm than good. Medications that block secretion of growth hormone or the receptors it acts on are effective in curing the disorder about 70 percent of the time.
Radiation is the last option, and it is given if surgery and medication don’t work. It is 55 to 70 percent effective in curing the disorder but over time can affect other hormones the pituitary gland produces.
“If treatment is effective, soft tissue swelling really decreases,” Ray said. “Heart health, diabetes, sleep apnea and other symptoms will improve. Your hands, feet and jaw may be larger than they were before, but facial features will look less coarse.”