Acromegaly is a rare hormonal condition that results from an excess amount of growth hormone (GH) in the body. The extra amount of GH causes excess growth in the bones and soft tissues of the body. Children with the condition can grow to abnormal heights. They may also have an exaggerated bone structure. Acromegaly mostly affects the arms, legs, and face.
The symptoms of acromegaly can be difficult to detect since they usually develop slowly over time. For example, you may notice over a period of several months that you have a ring that feels increasingly tight on your finger and one day it no longer fits. You may also find that you need to go up a size in shoes if you have this condition.
Common symptoms of acromegaly are:
- enlarged bones in the face, feet, and hands
- excessive hair growth in women
- an enlarged jaw or tongue
- a prominent brow
- excessive growth spurts, which are more common in people who’ve had abnormal growth before adolescence
- weight gain
- swollen and painful joints that limit movement
- spaces between the teeth
- splayed fingers and toes
- a hoarse, deep voice
- an inability to sleep
- muscle weakness
- profuse sweating
- body odor
- enlarged sebaceous glands, which are glands that produce oils in the skin
- thickened skin
- skin tags, which are noncancerous growths
You should see your doctor if you’ve noticed one or more of these symptoms.
GH is part of a group of hormones that regulate the growth and development of the body. People with acromegaly have too much GH. It accelerates bone growth and organ enlargement. Because of this growth stimulation, the bones and organs of people with acromegaly are much larger than other people’s bones and organs.
GH is made in the brain’s pituitary gland. According to the National Institutes of Health (NIH), more than 95 percent of people with acromegaly have a benign tumor affecting their pituitary. This tumor is called an adenoma. Adenomas are common. They affect about 17 percent of people. In most people, these tumors don’t cause excess GH, but when they do can result in acromegaly.
Acromegaly can start any time after puberty. However, it occurs more often in middle age. People aren’t always aware of their condition. Changes to the body may take place slowly over the course of many years.
Many people with acromegaly don’t know they have the condition because the onset of symptoms is usually slow. However, if your doctor suspects you have acromegaly, they can test you for it. Acromegaly is most often diagnosed in middle-aged adults, but the symptoms may appear at any age.
Blood tests can determine if you have too much GH, but these aren’t always accurate because GH levels fluctuate throughout the day. Instead, your doctor may order a glucose tolerance test. This test requires you to drink 75 to 100 grams of glucose and then have your GH levels tested. If your body is secreting normal levels of GH, excess glucose will cause your body to suppress your GH levels. People who have acromegaly will still show high GH levels.
Insulin-Like Growth Factor 1 (IGF-1)
Doctors may also test for a protein called insulin-like growth factor 1 (IGF-1). Levels of IGF-1 can show if there is abnormal growth in the body. IGF-1 testing can also be used to monitor the progress of other hormone treatments.
X-rays and MRI scans may be ordered to check for excess bone growth if your doctor suspects you have acromegaly. Your doctor will also perform a physical exam, and they may order a sonogram to check the size of internal organs.
After you’re diagnosed with acromegaly, your doctor can use MRI and CT scans to help them find the pituitary tumor and determine its size. If they don’t find a tumor on the pituitary gland, your doctor will look for tumors in the chest, abdomen, or pelvis that may be causing excess GH production.
The NIH estimates that three to four out of every 1 million people develop acromegaly every year and that 60 out of every 1 million people have the condition at any given time. However, since the condition often goes undiagnosed, the total number of affected individuals is probably underestimated.
Treatment for acromegaly is based on your age and overall health. The goals of treatment are to:
- bring GH production levels back to normal
- relieve pressure around any growing pituitary tumors
- maintain normal pituitary function
- treat any hormone deficiencies and improve the symptoms of acromegaly
Several types of treatments may be needed.
Surgery to remove the tumor causing excess GH is the first option doctors usually recommend to people with acromegaly. Usually, this treatment is quick and effective in reducing GH levels, which can improve symptoms. One possible complication is damage to the pituitary tissues that surrounded the tumor. If this happens, it can mean you’ll need to start a lifelong pituitary hormone replacement treatment. Rare but serious complications include cerebrospinal fluid leaks and meningitis.
Medication is another treatment option that’s often used if surgery isn’t successful in reducing GH levels, and it can also be used to shrink large tumors before surgery. These types of medications are used to regulate or block GH production:
- somatostatin analogs
- GH receptor antagonists
- dopamine agonists
Radiation may be used to destroy large tumors or sections of tumor left after surgery or when medications alone aren’t effective. Radiation can slowly help to lower GH levels when used along with medication. A dramatic decrease in GH levels using this type of treatment may take several years, with radiation administered in multiple four- to six-week sessions. Radiation can impair your fertility. In rare cases, it can lead to vision loss, brain injury, or secondary tumors.
If it’s left untreated, acromegaly can cause serious health problems. It can even become life-threatening. Some common complications include:
- vision loss
- a compression of the spinal cord
- uterine fibroids in women, which are benign tumors of the uterus
- a reduced release of pituitary hormones, which is called hypopituitarism
- carpal tunnel syndrome
- sleep apnea, which is characterized by sporadic breathing during sleep
- precancerous growths, or polyps, on the lining of the colon
- goiter, which is a thyroid gland enlargement that causes swelling of the neck
- type 2 diabetes
- heart disease, especially an enlarged heart
- high blood pressure, or hypertension
The outlook for people with acromegaly is usually positive if the condition is discovered in the early stages. Surgery to remove pituitary tumors is usually successful. Treatment may also help keep acromegaly from having long-term effects.
Coping with the symptoms and treatments of acromegaly can be challenging. Many people find it helpful to join support groups. Check online to find local support groups near you.