Acromegaly is a rare hormonal condition in adults that causes some bones, organs and other tissues to grow bigger. A small gland in the brain called the pituitary gland drives these changes by making too much growth hormone (GH). High GH levels increase another hormone called insulin-like growth factor-1 (IGF-1). This usually happens due to a noncancerous, also called benign, pituitary tumor.

When the body has too much growth hormone, bones get bigger. In childhood, this leads to increased height as part of a condition called gigantism. In adults with acromegaly, a change in height doesn’t happen. Instead, bones in the hands, feet and face become bigger. Other changes may include joint pain, thickened skin, and facial changes such as a bigger jaw or nose.

These changes happen slowly over many years. So people with acromegaly and their loved ones may not notice the symptoms right away. It may take a long time to see changes. And healthcare professionals may have a hard time finding and treating the condition early on.

Acromegaly is a rare hormonal condition. Fewer than 15 people per 100,000 are living with acromegaly. Each year, about 3 to 5 people out of every million people are diagnosed with acromegaly. Because the condition develops slowly and diagnosis is often delayed, the true number of cases may be a little higher.

Without treatment, acromegaly can lead to other serious and sometimes life-threatening complications. But treatments such as surgery, medicine and radiation can lower the risk of complications and improve many acromegaly symptoms. With treatment, many people with acromegaly can live a healthy life with a life expectancy close to that of people without acromegaly.

Acromegaly symptoms can change the way some body parts look. Common visible changes can include:

Skin changes in acromegaly may include acne, skin tags, thickened or oily skin, and swelling under the skin.

Most often, people with acromegaly don’t have every possible body change. And because the changes come on slowly, they may take years to notice.

How does acromegaly affect the body?

Beyond visible changes, too much GH and IGF-1 affect many organs and systems. Specific effects include:

Early symptoms of acromegaly may be subtle, such as changes in ring or shoe size. As the condition progresses, other common symptoms can include:

What is the difference between acromegaly and other conditions?

Acromegaly is a rare hormonal condition in adults that happens when there is too much growth hormone (GH) and insulin-like growth factor-1 (IGF-1). Acromegaly is usually caused by a noncancerous, also called benign, pituitary tumor. It leads to enlarged hands, feet and facial features, joint pain, and serious complications if it’s not treated. Several other conditions may look similar to acromegaly, but the causes and symptoms are different.

Acromegaly vs. gigantism

Acromegaly vs. Cushing disease

Acromegaly vs. Marfan syndrome

Acromegaly vs. Paget’s disease of bone

Acromegaly vs. achondroplasia

Acromegaly vs. Weaver syndrome

When to see a doctor

Get a healthcare checkup if you think you have symptoms of acromegaly. The condition usually develops slowly. Even family members may take a long time to notice the physical changes that happen. But it’s important for a healthcare professional to find the condition as early as possible. Treatment can help prevent serious health conditions that can happen along with acromegaly.

The most common cause of acromegaly is a noncancerous tumor in the pituitary gland, called an adenoma. An adenoma makes too much growth hormone over a long amount of time.

Too much growth hormone causes many symptoms of acromegaly. Some of the symptoms, such as headaches and impaired vision, are due to the tumor pressing on nearby brain tissues.

Rarely, tumors in other parts of the body cause acromegaly. These include tumors of the lung or pancreas. Sometimes these tumors release growth hormone. Or they make a hormone called growth hormone-releasing hormone. This signals the pituitary gland to make more growth hormone.

The pituitary gland is located at the base of the brain, behind the bridge of the nose. It makes growth hormone and other hormones. Growth hormone plays an important role in controlling physical growth.

The pituitary gland releases growth hormone into the bloodstream. This triggers the liver to make a hormone called insulin-like growth factor-1 (IGF-1). IGF-1 is what causes bones and other tissues to grow. Too much growth hormone leads to too much IGF-1. And that can cause acromegaly symptoms and complications.

What is the relationship between pituitary tumors and acromegaly?

Acromegaly is almost always caused by a pituitary adenoma, which is a noncancerous tumor that develops in the pituitary gland. Pituitary adenomas are the most common type of pituitary tumor. Pituitary adenomas and other tumors are types of skull base tumors.

The pituitary gland contains different types of hormone-producing cells, including somatotroph cells. Somatotroph cells make growth hormone (GH). When a tumor grows from the somatotroph cells, it can release too much GH. Extra GH causes the liver to make more insulin-like growth factor 1 (IGF-1). This leads to the body changes seen in acromegaly such as enlarged hands, feet and facial features. Only somatotroph adenomas, sometimes called GH-secreting adenomas, cause acromegaly.

Other types of pituitary adenomas come from different hormone-producing cells, but these do not cause acromegaly:

The main known risk factor for acromegaly is a rare inherited condition called multiple endocrine neoplasia, type 1 (MEN1). In MEN1, tumors can form in the parathyroid glands, pancreas and pituitary gland. These tumors release extra hormones. Too much parathyroid hormone can weaken bones and cause kidney stones. A pancreas tumor may release insulin and cause low blood sugar. If a pituitary tumor makes excess growth hormone, acromegaly can result.

Very rarely, acromegaly also can run in families. This may occur in conditions such as familial isolated pituitary adenoma (FIPA), which increases the chance of pituitary tumors.

Outside of these rare inherited syndromes, most people with acromegaly have no known risk factors.

Without treatment, acromegaly can lead to complications, including:

Heart and blood vessel complications

Cancer and conditions that can lead to cancer

Sexual health, reproductive health and pregnancy concerns

Metabolic problems

Bone, joint and nerve conditions

Other complications

Early treatment of acromegaly can prevent these complications or keep them from becoming worse. Without treatment, acromegaly and its complications can shorten life expectancy.

Diagnosis involves the steps that your healthcare professional takes to find out if you have acromegaly. Your healthcare professional asks about your health history and does a physical exam. You also may need the following tests:

Acromegaly is not always curable, but treatment can often control the disease. The goal of treatment is to improve symptoms, prevent complications, and bring growth hormone (GH) and insulin-like growth factor 1 (IGF-1) levels back to healthy levels. Keeping these hormone levels under control can improve quality of life and lower long-term health risks.

Treatment options for acromegaly include:

Some people need a mix of these treatments. Your treatment plan depends on factors such as tumor size and location, the severity of symptoms, and your age and overall health.

Treatment can improve some physical features, such as swelling of soft tissues or changes in skin. However, bone enlargement usually cannot be reversed.

If you also have other health conditions related to acromegaly, such as diabetes, sleep apnea or heart disease, you may need additional treatments to manage them.

Pituitary tumor surgery or other procedures

The main surgical treatment for acromegaly is transsphenoidal surgery. In this procedure, a neurosurgeon removes the pituitary tumor through the nose and a hollow space behind the nasal passages, called the sphenoid sinus. This approach avoids opening the skull and is the most common way surgeons treat acromegaly. If the tumor causing symptoms isn’t located on the pituitary gland, the surgeon may recommend another type of surgery to remove the tumor.

Pituitary surgery for acromegaly often returns growth hormone to the right level, especially if the tumor is small. If the tumor was putting pressure on the tissues around the pituitary gland, removing the tumor also can help relieve headaches and vision changes.

Sometimes surgeons can’t remove the whole tumor, especially if it has grown close to important nerves or blood vessels. When this happens, growth hormone levels may still be too high after surgery. Additional treatment with another surgery, medicines or radiation therapy may be needed.

Medicines

Medicines for acromegaly can help lower growth hormone (GH) and insulin-like growth factor 1 (IGF-1) levels. Some medicines may block the effects of these hormones. Your healthcare professional may recommend one or more of the following:

Therapies

Radiation therapy for acromegaly is usually used after surgery to destroy leftover tumor cells. It also gradually lowers growth hormone levels, but it may take months or even years before you notice improvement.

Radiation also can lower levels of other pituitary hormones, not just growth hormone levels. If you receive radiation, you’ll need lifelong follow-up to monitor your hormone levels and pituitary function.

Types of radiation therapy include:

Acromegaly prognosis and life expectancy

What is the life expectancy of people with acromegaly?

In the past, people with untreated acromegaly often had a shorter life expectancy because of complications such as heart disease, diabetes, sleep apnea and cancer. Today, with earlier diagnosis and better treatments, the life expectancy with treatment for acromegaly is close to that of people without acromegaly. Many people with acromegaly can live a typical lifespan if their GH and IGF-1 levels are lowered and maintained at healthy levels with treatment.

What is the prognosis for acromegaly?

The prognosis for acromegaly depends on how early the condition is diagnosed and how well the treatment controls hormone levels. Surgery used to completely remove small pituitary tumors may cure acromegaly. Large tumors are harder to remove completely. But medicines and radiation therapy can usually bring GH and IGF-1 levels down to safe ranges.

Even after treatment, some physical changes — such as bone growth in the jaw, hands or feet — may not fully reverse. But controlling hormone levels improves symptoms and reduces the risk of serious complications. Regular follow-up is important to keep hormone levels in check and monitor for any return of tumor growth.

You’ll likely first see your primary healthcare professional. Or you may be referred right away to a doctor called an endocrinologist who finds and treats hormone conditions.

It’s good to prepare for your appointment. Here’s some information to help you get ready and to know what to expect from your healthcare professional.

What you can do

Making a list of questions helps you make the most of your time with your healthcare professional. For acromegaly, some basic questions to ask include:

Feel free to ask any other questions you have.

What to expect from your doctor

Your healthcare professional is likely to ask you questions such as:

© 1998-2024 Mayo Foundation for Medical Education and Research (MFMER). All rights reserved.

We Make Health Possible

As East Central Indiana’s population grows, we’re putting health care where people need it most. Besides Hancock Regional Hospital, ranked as one of the nation’s safest by the Lown Hospital Index, our network includes more than 30 other locations near your home or work.

Learn More about Hancock