What is acromegaly?
Acromegaly is a rare but serious medical condition that occurs when the body produces high levels of growth hormone. Acromegaly can occur at any age, but is often diagnosed in middle age.
Acromegaly is rare, affecting around 1 in every 200,000 people. The condition affects men and women equally.
Symptoms and Causes
What causes acromegaly?
A benign (noncancerous) tumor that produces too much growth hormone, called an adenoma, is the cause of acromegaly. The adenoma is in the pituitary, a tiny gland located near the bottom of the brain. The pituitary regulates how the body makes several hormones, in addition to growth hormone.
What are the symptoms of acromegaly?
Acromegaly affects the body’s bones and tissues and causes them to grow in abnormal ways. In children, acromegaly causes gigantism (unusual growth). When a child or young adult has too much growth hormone in his or her body, gigantism can cause their bones to grow at an increased rate. Some people with gigantism reach 8 feet tall.
Adults with acromegaly do not grow tall, but may have the following symptoms:
- Enlarged or swollen body parts, such as the hands, feet or chest
- Changes in the face, including a prominent jaw, nose or forehead
- Excessive sweating or oily skin
- Numbness or “pins and needles” in the hands
- Joint pain
- Carpal tunnel syndrome or spinal cord problems
- Muscle weakness
- Sleep apnea, a condition that causes the body to stop breathing for short bursts of time during sleep
- Changes in vision or voice
Acromegaly symptoms often start slowly and may be difficult to notice at first. Some people only notice their hands have grown in size when their wedding ring feels tight.
Diagnosis and Tests
How is acromegaly diagnosed?
Symptoms of acromegaly often show up very slowly, over many years. This makes it hard to diagnose.
Doctors who suspect acromegaly may order these tests to diagnose the condition:
- Blood tests: Growth hormone and IGF-I blood tests measure different types of growth hormone levels in your blood. If these levels are high, your doctor might order a glucose tolerance test to confirm an acromegaly diagnosis. Glucose tolerance tests tell doctors whether your body’s growth hormone levels react to glucose (sugar) the way they should. For this test, you’ll have blood taken at different intervals after you drink a glucose solution.
- Imaging tests: If blood tests confirm that you have acromegaly, your doctor will probably recommend an MRI scan, which can clearly show the size and location of a tumor and help determine the proper treatments.
Management and Treatment
How is acromegaly treated?
There are several treatment options for acromegaly. Your doctor will consider your symptoms and circumstances before deciding which treatment(s) are right for you.
The most common treatments for acromegaly are surgery, medication and radiation therapy:
- Surgery: In many cases, surgery greatly improves acromegaly symptoms or corrects the condition entirely. The specifics of the surgery will depend on the size and location of a tumor. The goal of surgery is to remove all of a tumor that is causing excess growth hormone production. If doctors remove enough of the tumor, you may not need further treatment. If doctors can remove only a part of a tumor, you may need medication or radiation therapy to manage your symptoms and reduce the production of growth hormone.
- Medication: Injection medications such as somatostatin analogs (Sandostatin®) can help manage hormone levels. Medications work in different ways to normalize the body’s growth hormone levels and improve your symptoms.
In some cases, a person may take medication until a tumor has shrunk. This can allow doctors to safely remove it with surgery. Other people may need to take medication long-term to effectively manage growth hormone levels and symptoms.
- Radiation therapy: Radiation therapy can help lower growth hormone levels when medications aren’t effective. Radiation therapy uses specialized equipment to target the tumor with radiation beams. This therapy works slowly. It may require several treatment courses, with breaks in between, and may take several years for full effect.
Can acromegaly be prevented?
Acromegaly can’t be prevented. Early diagnosis and treatment is the most effective way to treat or manage acromegaly.
Outlook / Prognosis
What is the outlook for people with acromegaly?
Outcomes for people with acromegaly depend on how severe the disease is and how effectively therapies treat the symptoms. Many people see a significant improvement in symptoms after treatment.
If it is not treated, acromegaly can cause disabling and disfiguring symptoms. These symptoms can greatly affect the person’s self-image and quality of life. Support groups help some people deal with the challenges they face because of acromegaly.
Health complications such as heart disease or Type 2 diabetes can also decrease quality of life and even shorten the lifespan. In the most severe cases, these complications can cause life-changing effects.
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