Acromegaly

Overview

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.

Symptoms

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

• Thick ears and lips.
• A broad nose.
• Enlarged hands and feet.
• A jutting brow or jaw.
• Gaps between teeth.
• An enlarged tongue.
• An expanded rib cage that may cause the chest to have a round shape.

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:

• Dental health. Acromegaly can cause an unusually large jaw and spacing between the teeth. People may notice gaps forming between teeth, bite changes or teeth that don't line up correctly. The tongue also may enlarge, leading to speech and breathing problems. Regular dental care is important for managing these oral changes.
• Reproductive and sexual health. Excess growth hormone can affect reproductive health. In men, acromegaly may lead to erectile dysfunction, reduced libido and low testosterone. Enlargement of soft tissues also may occur, but sexual issues are usually due to hormonal imbalance rather than physical enlargement.
• Voice changes. Thickening of tissues in the vocal cords and throat can make the voice deeper or hoarser over time. Some people also notice snoring or changes in speech.

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

• Vision troubles, including loss of side vision.
• More sweating and body odor than is typical.
• Fatigue and low energy.
• Headaches.
• Joint pain.
• Sleep problems, including sleep apnea.

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

• Gigantism happens when too much growth hormone is produced before puberty while the bones are still growing.
• Children with gigantism grow unusually tall, with very long arms and legs.
• Acromegaly develops after puberty, when the growth plates are closed. It causes changes in hands, feet and facial bones, but not extreme height.

Acromegaly vs. Cushing disease

• Cushing disease is caused by too much cortisol. Cortisol is another pituitary hormone. The extra cortisol changes where fat is stored.
• Symptoms include weight gain in the face and trunk, a hump on the back from the redistributed fat storage, easy bruising and diabetes.
• Acromegaly is caused by too much of the GH and IGF-1 hormones and leads to bone and tissue overgrowth, not fat redistribution.

Acromegaly vs. Marfan syndrome

• Marfan syndrome is a genetic condition that affects connective tissue.
• People with Marfan syndrome are tall and thin with long arms, legs and fingers, and heart or eye conditions.
• Acromegaly develops later in life and does not cause the long, slender build of Marfan syndrome.

Acromegaly vs. Paget's disease of bone

• Paget's disease is a condition where bones break down and regrow in an unusual way, becoming weak and misshapen.
• It can cause skull enlargement, bent legs or bone pain.
• Unlike Paget's disease of bone, acromegaly also causes soft tissue swelling, enlarged hands and feet, and metabolic complications such as diabetes, high blood pressure, high cholesterol and sleep apnea.

Acromegaly vs. achondroplasia

• Achondroplasia is the most common form of dwarfism. It is caused by a gene change that affects bone growth.
• People with achondroplasia have short stature, short arms and legs, and an average-sized trunk.
• Acromegaly does not cause short stature. Instead, it causes enlargement of features after typical growth is complete.

Acromegaly vs. Weaver syndrome

• Weaver syndrome is a very rare condition present from birth that causes rapid growth, advanced bone age and developmental delays. Weaver syndrome is caused by a change in a gene and is passed down from a parent to a child.
• Babies and children with Weaver syndrome are tall and large for their age.
• Acromegaly develops in adulthood and is not caused by a gene change.

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.

Causes

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:

• Lactotroph adenomas make prolactin and can cause issues such as irregular periods and difficulty getting pregnant.
• Corticotroph adenomas make adrenocorticotropic hormone (ACTH). Too much ACTH causes the adrenal glands to release extra cortisol, which can lead to Cushing disease.
• Thyrotroph adenomas make thyroid-stimulating hormone (TSH) and can lead to hyperthyroidism.
• Gonadotroph adenomas usually do not make excess hormone. But as they grow, gonadotroph adenomas can press on nearby tissues and cause symptoms such as headaches, vision problems, low energy, or changes in sexual and reproductive health.

Risk factors

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.

Complications

Without treatment, acromegaly can lead to complications, including:

Heart and blood vessel complications

• High blood pressure, also called hypertension.
• Narrowed arteries, which raise the risk of heart attack or stroke.
• Disease of the heart muscle, called cardiomyopathy, which can make the heart stiff or enlarged. This may eventually lead to heart failure.

Cancer and conditions that can lead to cancer

• Higher risk of some cancers, including prostate, breast, colon, thyroid and stomach cancer.
• Growths called polyps on the lining of the colon. Without treatment, these growths can lead to colon cancer.

Sexual health, reproductive health and pregnancy concerns

• Irregular or missed periods.
• Irregular vaginal bleeding.
• Erectile dysfunction and reduced sexual desire.
• Infertility.
• Pregnant people with acromegaly may need special monitoring because of increased risks such as gestational diabetes.

Metabolic problems

• Insulin resistance and type 2 diabetes.
• High cholesterol and other changes in fats in the blood.

Bone, joint and nerve conditions

• Osteoarthritis, with pain and stiffness in the joints.
• Carpal tunnel syndrome, which causes numbness and tingling in the hands.
• Spinal cord compression or fractures.

Other complications

• Sleep apnea, which is a condition where breathing repeatedly stops and starts during sleep.
• Changes in the thyroid gland, called a goiter.
• Vision changes or vision loss if the tumor presses on the optic nerves.
• Depression (major depressive disorder), fatigue and reduced quality of life.

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

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:

• IGF-1 measurement. The IGF-1 blood test measures the level of insulin-like growth factor 1 (IGF-1) in your blood. A high IGF-1 level can mean that the level of growth hormone also is high. IGF-1 is a hormone made in the liver in response to the growth hormone. A high IGF-1 level is an important marker for diagnosing acromegaly. But IGF-1 also can be elevated due to other conditions such as diabetes, liver or kidney disease, or pregnancy.

  Because of this, healthcare professionals usually confirm the diagnosis with a second test, such as an oral glucose tolerance test (OGTT), and an MRI scan of the pituitary gland to check for a tumor.

  It helps confirm an acromegaly diagnosis. The OGTT measures your growth hormone level before and after you drink a type of sugar water called glucose. In people who don't have acromegaly, the glucose drink typically causes the growth hormone level to fall. But if you have acromegaly, your growth hormone level tends to stay high.

• MRI and other imaging tests. An MRI scan of the pituitary gland is the main imaging test for acromegaly. It shows the location and size of a pituitary tumor. If no pituitary tumor is found, your healthcare professional may order other scans to look for tumors elsewhere in the body. X-rays of the hands and feet also may be used to check for changes in bone growth caused by excess growth hormone.

Treatment

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:

• Pituitary tumor surgery to remove the tumor causing the symptoms. This is often the first treatment when acromegaly is due to a pituitary tumor.
• Medicines that lower GH or block its effects. These may be used if surgery doesn't bring hormone levels within the healthy range.
• Radiation therapy to target the tumor and reduce hormone production. This may be recommended if surgery isn't possible, if it can't remove the whole tumor or if medicines don't help enough.

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:

• Somatostatin analogues. Somatostatin is a natural brain hormone that limits GH production. The medicines octreotide (Mycapssa, Sandostatin) and lanreotide (Somatuline Depot) lower GH and IGF-1 levels and may shrink the tumor. Taking one of these medicines signals the pituitary gland to make less growth hormone. Mycapssa is a capsule taken by mouth twice a day. The others are monthly injections. In September 2025, the Food and Drug Administration in the U.S. approved a new somatostatin called paltusotine (Palsonify) for the treatment of acromegaly. This is a capsule taken by mouth once a day. Unlike octreotide or lanreotide, which are peptides, paltusotine is not a peptide. That means it is not made of amino acids like proteins are. Instead, it is a small molecule designed to mimic somatostatin's action, with a chemical structure that makes it easier to absorb and able to stay in the bloodstream longer than peptide medicines. Somatostatins are the first line treatment for acromegaly if surgery doesn't improve symptoms.
• Dopamine agonists. Cabergoline and bromocriptine (Cycloset, Parlodel) are medicines taken by mouth that may help lower GH and IGF-1 levels, especially when levels are only slightly high. They also may shrink the tumor. Because higher doses are often needed, side effects such as nausea, tiredness, dizziness, sleep problems or mood changes can occur.
• Growth hormone receptor antagonist. Pegvisomant (Somavert) blocks the effect of growth hormone on the body's tissues, which lowers IGF-1 levels. It does not shrink tumors or reduce GH levels. Pegvisomant is given as a daily shot and may be used when other medicines do not work well enough. Because pegvisomant may affect the liver, regular blood tests are needed to monitor liver function.

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:

• Stereotactic radiosurgery. This approach uses 3D imaging to deliver a high dose of radiation precisely to the tumor while limiting exposure to healthy tissue. It is usually given in a single dose. Growth hormone levels may return to a healthy range within several years. The most common technique is called Gamma Knife. This radiosurgery technique does not involve a surgical knife.
• Proton beam radiation. This type of radiation uses tiny particles called protons that target the tumor. It may cause less damage to the pituitary gland and the tissue that surrounds it than does conventional radiosurgery.
• Conventional radiation therapy. This type of radiation involves receiving small doses of radiation over 4 to 6 weeks. The risk of damage to the pituitary gland is higher than it is with proton beam radiation and stereotactic radiosurgery. The full effect of the treatment may take 10 years or more to appear.

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.

Preparing for an appointment

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

• Be aware of any restrictions before the appointment. When you make the appointment, ask if there's anything you need to do to prepare for tests. For instance, you may be asked to stop eating for a certain number of hours before a test. This is called fasting.
• Write down your symptoms. Keep track of anything that causes you discomfort or concern. This may include headaches, vision changes or discomfort in your hands. Write down all of your symptoms, even if they don't seem related to the reason for which you made the appointment.
• Write down key personal information, including any changes in your sex life or menstrual cycle.
• Make a list of all medicines, vitamins and supplements you're taking and the doses.
• Take along old pictures that your healthcare professional can use to compare with your appearance today. Your healthcare professional likely will be interested in photos from 10 years ago through the present.
• Take along a family member or friend if you can. This person may remember something that you miss or forget.
• Write down questions to ask your healthcare professional.

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:

• What's the most likely cause of my symptoms? Are there other possible causes?
• What tests do I need? And should I see a specialist?
• What treatments are available for this condition? Which approach do you recommend?
• How long will I need treatment before my symptoms improve? Could treatment help me look and feel as I did before I developed symptoms of acromegaly?
• Will I have long-term complications from this condition?
• I have other health conditions. How can I best manage the conditions together?
• Are there brochures or other printed material I can take with me? What websites do you recommend?

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:

• What are your symptoms, and when did they start?
• Have you noticed any changes in how you look?
• How much would you say your features have changed over time? Do you have old photos I can use for comparison?
• Have you noticed changes in your sleep or your sex life? Do you have headaches or joint pain, vision changes, or more sweating than usual?
• Does anything seem to make your symptoms better or worse?
• Do your old shoes and rings still fit? If not, how much has the fit changed over time?
• Have you had a colon cancer screening test?