Acromegaly
What is Acromegaly?
Acromegaly is a rare hormonal disorder that happens when your pituitary gland makes too much growth hormone during adulthood. The pituitary gland is a small gland at the base of your brain. It controls many important hormones in your body.
When excess growth hormone enters your bloodstream, your bones and tissues start to grow larger. This mostly affects your hands, feet, and facial features. In most cases, a noncancerous tumor on the pituitary gland causes this condition. The tumor is called a pituitary adenoma.
Acromegaly develops slowly over many years. Many people don't notice the changes at first because they happen gradually. Early detection through blood testing can help you start treatment sooner and prevent serious complications like heart disease and diabetes.
Symptoms
- Enlarged hands and feet that may require larger rings, gloves, or shoes
- Changes in facial features including a protruding jaw, enlarged nose, or thicker lips
- Thickened or oily skin and skin tags
- Joint pain and reduced mobility
- Deepening of the voice due to enlarged vocal cords and sinuses
- Excessive sweating and body odor
- Fatigue and muscle weakness
- Headaches and vision problems from tumor pressure
- Snoring and sleep apnea
- Irregular menstrual periods in women or reduced sex drive in men
Many people have symptoms for years before getting diagnosed. The changes happen so slowly that they may seem like normal aging. Family members or friends who haven't seen you in a while may notice changes more easily.
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Causes and risk factors
About 95% of acromegaly cases are caused by a noncancerous pituitary tumor called an adenoma. This tumor produces excess growth hormone without your body's normal control mechanisms. Doctors don't fully understand why these tumors develop. They are not passed down through families in most cases.
In rare situations, tumors in other parts of the body like the lungs or pancreas can produce growth hormone or substances that trigger the pituitary gland. Risk factors include being middle-aged, as most people are diagnosed between ages 40 and 60. Having certain rare genetic conditions like multiple endocrine neoplasia type 1 or familial acromegaly can increase your risk. The condition affects men and women equally.
How it's diagnosed
Doctors diagnose acromegaly primarily through blood tests that measure growth hormone and insulin-like growth factor 1, also called IGF-1. IGF-1 is produced by your liver in response to growth hormone. It stays more stable in your bloodstream than growth hormone itself. High IGF-1 levels are a strong indicator of acromegaly.
Additional blood tests include IGF-2, IGF binding protein-3, and sex hormone binding globulin. These help confirm the diagnosis and assess how the condition affects your body. Rite Aid offers blood testing for acromegaly markers through our flagship panel at over 2,000 Quest Diagnostics locations. After blood tests confirm elevated hormone levels, your doctor will likely order an MRI to locate the pituitary tumor.
Treatment options
- Surgery to remove the pituitary tumor is often the first treatment option
- Medications that block growth hormone production or action, including somatostatin analogs and growth hormone receptor antagonists
- Radiation therapy if surgery doesn't fully remove the tumor or if surgery isn't possible
- Regular monitoring of hormone levels through blood tests to track treatment progress
- Treatment for complications like diabetes, high blood pressure, and sleep apnea
- Physical therapy to manage joint pain and maintain mobility
- Working with an endocrinologist who specializes in hormone disorders
- Regular heart health monitoring since acromegaly increases cardiovascular risk
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- Simple blood draw at your nearest lab
- Results in days, not weeks
- Share results with your doctor
Frequently asked questions
Both conditions are caused by excess growth hormone. Gigantism occurs in children before their growth plates close, causing extreme height. Acromegaly happens in adults after growth plates have closed. It causes bones to thicken rather than lengthen.
Acromegaly develops very slowly over many years. Most people have the condition for 7 to 10 years before getting diagnosed. The gradual changes in appearance often go unnoticed until comparing old photos or when someone who hasn't seen you recently points out differences.
Surgery can cure acromegaly if the entire pituitary tumor is successfully removed. About 85% of people with small tumors are cured with surgery. Larger tumors may require additional treatment with medication or radiation. Regular monitoring is needed even after successful treatment.
The IGF-1 blood test is the most reliable screening tool for acromegaly. IGF-1 levels remain stable throughout the day, unlike growth hormone which fluctuates. Elevated IGF-1 combined with high growth hormone levels strongly indicates acromegaly.
Untreated acromegaly can lead to serious health problems. These include type 2 diabetes, high blood pressure, heart disease, arthritis, and colon polyps. The condition can also cause vision loss if the tumor presses on optic nerves. Early treatment reduces these risks significantly.
Most doctors recommend blood tests every 3 to 6 months after treatment begins. Once hormone levels stabilize in the normal range, testing may be reduced to once or twice yearly. Your endocrinologist will create a monitoring schedule based on your specific situation and treatment response.
Lifestyle changes alone cannot treat acromegaly since it requires medical intervention. However, healthy habits support overall health and treatment outcomes. Regular exercise helps maintain joint function and heart health. Eating a balanced diet helps manage blood sugar and weight.
Acromegaly is rarely inherited. Most cases occur spontaneously without a family history. Less than 5% of cases are linked to genetic conditions like multiple endocrine neoplasia type 1 or familial isolated pituitary adenoma. Genetic testing may be recommended if multiple family members are affected.
Some soft tissue changes may improve with successful treatment. Swelling in the face and hands often decreases. However, bone changes are permanent. Surgery or other cosmetic procedures may be options if you want to address permanent changes in facial structure.
Yes, pituitary tumors can affect production of other hormones. They may reduce thyroid hormone, cortisol, or sex hormones. Some people develop diabetes due to excess growth hormone interfering with insulin. Testing other pituitary hormones is an important part of diagnosis and ongoing care.