Acromegaly

What is acromegaly?

Acromegaly is a rare hormonal condition in which the body makes too much growth hormone over a long period of time. Growth hormone is a chemical messenger produced by the pituitary gland, a small gland about the size of a pea that sits at the base of the brain, just behind the bridge of the nose. When adults are exposed to too much growth hormone for months or years, bones, cartilage, and soft tissues slowly become thicker and larger. This gradual change is what gives the condition its name, which comes from Greek words meaning “enlargement of the extremities.”

Understanding what is acromegaly starts with understanding timing. In adults, the growth plates in the long bones have already closed, so the excess hormone does not make a person taller. Instead, it causes the hands, feet, facial bones, and internal organs to enlarge. When the same hormone excess occurs in children or adolescents whose growth plates are still open, it causes excessive height, a related condition called gigantism.

Acromegaly can affect adults of any age, but it is most often diagnosed in middle age, typically between the ages of 30 and 50. Men and women appear to be affected in roughly equal numbers. Because the changes develop very slowly, many people live with the condition for years before it is recognized. Family members, or even the person affected, may not notice the gradual changes in appearance, which is one reason diagnosis is often delayed.

Symptoms of acromegaly

Acromegaly symptoms develop gradually, often over many years, and they can be easy to mistake for normal aging or other common health problems. Common signs and symptoms include:

• Enlarged hands and feet — rings no longer fit, shoe size increases, or gloves become tight.
• Changes in facial features — a more prominent brow and lower jaw, an enlarged nose, thicker lips, and wider spacing between the teeth.
• Thickened, oily, or coarse skin, sometimes with excessive sweating and body odor.
• Joint pain and limited joint movement, caused by cartilage overgrowth and early wear of the joints.
• Deepening of the voice, due to enlargement of the vocal cords and sinuses.
• Headaches, which may be persistent or severe.
• Vision problems, especially loss of side (peripheral) vision, if a pituitary tumor presses on the nerves that carry sight signals from the eyes.
• Snoring and sleep apnea — pauses in breathing during sleep caused by tissue overgrowth in the airway.
• Numbness or tingling in the hands, often from carpal tunnel syndrome, a condition in which a nerve at the wrist is compressed by swollen tissue.
• Fatigue and muscle weakness.
• Menstrual changes in women and erectile problems in men, because the pituitary tumor can disturb other hormones.
• Enlarged tongue, and in some cases enlargement of internal organs such as the heart, liver, or thyroid gland.

Symptoms often differ depending on how long the condition has been present and how large the underlying tumor is. In the early stage, changes may be limited to subtle enlargement of the hands and feet, increased sweating, or mild joint aches. As the condition progresses, facial changes become more noticeable and complications such as high blood pressure, diabetes, and heart problems may develop. When the pituitary tumor itself grows large, it can add “pressure” symptoms — headaches, vision loss, and reduced production of other pituitary hormones, which may cause tiredness, low sex drive, or changes in menstrual periods.

Because the changes are so gradual, comparing old photographs from previous years is sometimes what first reveals the transformation in facial appearance. Anyone who notices a steady increase in ring, glove, or shoe size in adulthood should mention it to a doctor, as this pattern is one of the more specific clues to acromegaly.

Causes and risk factors

Understanding acromegaly causes begins with the pituitary gland. In the great majority of cases — more than nine out of ten — the condition is caused by a benign (noncancerous) tumor of the pituitary gland called a pituitary adenoma. This tumor is made of cells that produce growth hormone, and it releases the hormone continuously rather than in the normal, controlled pattern.

The excess growth hormone signals the liver to make another hormone called insulin-like growth factor 1 (IGF-1). It is mainly IGF-1 that drives the overgrowth of bone and soft tissue seen in acromegaly. Doctors often measure IGF-1 in the blood because its level stays fairly steady during the day, unlike growth hormone itself, which naturally rises and falls.

Rarely, acromegaly is caused by tumors outside the pituitary gland. Some tumors elsewhere in the body — for example, in the lungs or pancreas — can produce a hormone that stimulates the pituitary to release growth hormone, or in very rare cases can produce growth hormone directly.

Most cases of acromegaly are not inherited and occur without any known trigger. There is nothing a person does or fails to do that causes the tumor to develop. In a small number of families, however, genetic conditions increase the risk of pituitary tumors. These include multiple endocrine neoplasia type 1 (MEN1), a hereditary condition affecting several hormone-producing glands, and certain rare gene changes that can cause pituitary tumors to run in families, sometimes appearing at a younger age. If several relatives have had pituitary tumors, a doctor may suggest genetic counseling.

Diagnosis

Acromegaly diagnosis usually involves a combination of a careful medical history, physical examination, blood tests, and imaging of the pituitary gland. Because the condition is rare and develops slowly, it is often first suspected by a doctor who notices characteristic physical features or by tests done for another reason.

Blood tests

The first step is usually a blood test for IGF-1, the hormone produced in response to growth hormone. A clearly elevated IGF-1 level, interpreted according to the person’s age and sex, strongly suggests acromegaly.

To confirm the diagnosis, doctors typically perform an oral glucose tolerance test. In this test, the person drinks a sugary solution, and growth hormone levels are measured in blood samples taken over the following two hours. In healthy people, the sugar load suppresses growth hormone to very low levels. In acromegaly, growth hormone fails to suppress normally, which confirms the diagnosis. A single random growth hormone measurement is generally not enough on its own, because the hormone naturally fluctuates throughout the day.

Imaging

Once blood tests confirm excess growth hormone, doctors use magnetic resonance imaging (MRI) — a scan that uses magnets and radio waves rather than radiation — to look for a tumor in the pituitary gland. MRI shows the size of the tumor and whether it presses on nearby structures such as the optic nerves. If no pituitary tumor is found, doctors may search for a rare tumor elsewhere in the body using other scans.

Additional tests

Because acromegaly can affect many organs, doctors often order further tests once the diagnosis is made. These may include checks of other pituitary hormones, a formal vision test to map the field of sight, blood sugar and cholesterol measurements, a heart evaluation, a sleep study if sleep apnea is suspected, and screening for colon polyps, which are somewhat more common in people with acromegaly.

Treatment options for acromegaly

The goals of acromegaly treatment are to bring growth hormone and IGF-1 levels back to normal, to reduce the size of the tumor or remove it, to relieve pressure on surrounding structures, and to prevent or manage complications such as heart disease and diabetes. Treatment is usually planned and coordinated by an endocrinologist — a doctor who specializes in hormone conditions — often working with a neurosurgeon and other specialists. At Acibadem, this condition is managed within the Endocrinology & Metabolism department, in cooperation with neurosurgery when an operation is needed. More detailed information about how the condition is evaluated and treated is available on the dedicated acromegaly treatment page.

Surgery

Surgery to remove the pituitary tumor is the first-line treatment for most people with acromegaly. The most common approach is transsphenoidal surgery, in which the surgeon reaches the pituitary gland through the nose and the sphenoid sinus (an air space behind the nose), so no visible incision is made on the face or skull. When the tumor is small and fully removable, surgery can often normalize hormone levels. Larger tumors, or tumors that have grown into surrounding structures, may not be completely removable, and additional treatment is then needed. As with any operation, there are risks, which the surgical team will explain in detail; these can include effects on other pituitary hormones and, less commonly, leakage of the fluid that surrounds the brain.

Medication

Medicines are used when surgery is not possible, when hormone levels remain high after surgery, or sometimes before surgery. The main groups include:

• Somatostatin analogs — injectable medicines that mimic a natural hormone that suppresses growth hormone release. In many cases they lower hormone levels and may modestly shrink the tumor.
• Growth hormone receptor antagonists — daily injections that block the action of growth hormone in the body, which can normalize IGF-1 levels in many patients, though they do not shrink the tumor.
• Dopamine agonists — tablets that can reduce hormone production in some people, usually those with milder hormone excess; they tend to be less effective than the other options but are taken by mouth.

The choice of medicine depends on hormone levels, tumor characteristics, side effects, other health conditions, and the individual’s response, and treatment is adjusted over time based on regular blood tests.

Radiation therapy

Radiation therapy may be recommended when tumor tissue remains after surgery and medicines are not sufficient or not tolerated. Modern techniques, including highly focused stereotactic radiosurgery, target the tumor precisely while limiting exposure of surrounding brain tissue. Radiation works slowly — hormone levels may take years to fall — so medicines are often continued in the meantime. A possible long-term effect is reduced production of other pituitary hormones, which can usually be managed with hormone replacement.

Observation and long-term monitoring

Pure watchful waiting is uncommon in confirmed, active acromegaly, because untreated hormone excess tends to cause progressive complications. However, careful monitoring without immediate additional treatment may be reasonable in selected situations — for example, after successful surgery, or in frail patients for whom the risks of further intervention outweigh the expected benefit. Whatever the treatment path, lifelong follow-up with periodic hormone tests and, when appropriate, MRI scans is a standard part of care.

Living with acromegaly and outlook

With modern treatment, the outlook for people with acromegaly has improved considerably. When growth hormone and IGF-1 levels are brought back into the normal range, many complications stabilize, and studies suggest that life expectancy can approach that of the general population. Soft tissue swelling, sweating, headaches, and sleep apnea often improve after successful treatment. Bone changes that have already occurred — such as enlarged jaw or hand bones — generally do not reverse, although further progression can be prevented.

Living well with acromegaly usually involves ongoing attention to the conditions it can cause or worsen. Your care team may monitor and treat high blood pressure, diabetes, high cholesterol, heart problems, joint pain, and sleep apnea. Regular dental care can help with changes in bite and tooth spacing, and physical therapy may ease joint symptoms. Periodic colon screening is often recommended. If the pituitary gland was damaged by the tumor or its treatment, replacement of other hormones — such as thyroid hormone, cortisol, or sex hormones — may be needed long term.

The emotional side of the condition deserves attention as well. Changes in appearance, a long path to diagnosis, and the need for lifelong follow-up can be difficult. Many people find it helpful to talk openly with their care team, connect with patient support groups, or seek counseling. No one can promise a specific outcome, but with consistent treatment and follow-up, most people with acromegaly are able to lead full, active lives.

Frequently asked questions

What is acromegaly in simple terms?

Acromegaly is a condition in which the body produces too much growth hormone in adulthood, usually because of a benign tumor in the pituitary gland at the base of the brain. Over time, the excess hormone causes bones and soft tissues to thicken and enlarge, most noticeably in the hands, feet, and face, and it can affect the heart, joints, and metabolism.

Can acromegaly be cured?

In many cases, especially when the pituitary tumor is small and can be fully removed, surgery can bring hormone levels back to normal, which doctors often describe as remission. When complete removal is not possible, medicines and radiation therapy can usually control hormone levels effectively. Even after successful treatment, lifelong monitoring is recommended, because the condition can occasionally return.

How serious is acromegaly if left untreated?

Untreated acromegaly tends to progress and can lead to serious complications, including high blood pressure, diabetes, heart enlargement and heart failure, severe joint disease, sleep apnea, and vision loss if the tumor presses on the optic nerves. It has also been associated with reduced life expectancy when uncontrolled. With timely diagnosis and treatment, these risks can be substantially reduced, which is why evaluation should not be delayed.

What are the first signs of acromegaly?

Early acromegaly symptoms are often subtle: rings, gloves, or shoes becoming tight; increased sweating; oily or thickened skin; mild joint aches; and gradual changes in facial features that may only be obvious when comparing old photographs. Headaches, snoring, tingling in the hands, and changes in menstrual periods or sexual function can also occur early. Because these signs develop slowly, they are frequently attributed to aging.

What is the recovery like after pituitary surgery for acromegaly?

Most people stay in the hospital for a few days after transsphenoidal surgery, which is performed through the nose without visible incisions. Temporary nasal congestion, headache, and fatigue are common in the first weeks, and doctors usually advise avoiding heavy lifting and nose-blowing for a period of time. Hormone levels are rechecked in the weeks and months after surgery to see whether the operation was successful and whether any additional treatment or hormone replacement is needed. Individual recovery varies, and your surgical team will give guidance suited to your situation.

Is acromegaly hereditary?

Most cases are not inherited and occur by chance. In a small minority of families, genetic conditions such as multiple endocrine neoplasia type 1 or certain rare gene changes increase the risk of pituitary tumors. If close relatives have had pituitary tumors or the condition appeared at a young age, a doctor may discuss genetic testing or counseling.

Which doctor treats acromegaly?

Acromegaly is usually diagnosed and managed by an endocrinologist, a physician specializing in hormone disorders, working together with a neurosurgeon experienced in pituitary surgery. Depending on individual needs, cardiologists, eye specialists, sleep medicine physicians, and radiation oncologists may also be involved. Long-term follow-up with the endocrinology team is a standard part of care.

When to see a doctor

Consider making an appointment with a doctor if you notice a gradual increase in the size of your hands, feet, or facial features in adulthood, persistent joint pain, unexplained excessive sweating, new snoring with daytime tiredness, or changes such as rings and shoes no longer fitting. These signs do not necessarily mean you have acromegaly, but they warrant a proper evaluation.

Seek prompt medical attention if you experience any of the following red-flag symptoms:

• Sudden, severe headache, especially if it is unlike any headache you have had before.
• Sudden loss or blurring of vision, double vision, or rapidly worsening loss of side vision.
• Severe fatigue, nausea, vomiting, dizziness, or confusion, particularly in someone known to have a pituitary tumor, as these can signal a hormone crisis or bleeding into the tumor.
• Pauses in breathing during sleep witnessed by a partner, together with severe daytime sleepiness.
• Chest pain, breathlessness, or irregular heartbeat, which may indicate heart complications.
• Symptoms of very high blood sugar, such as extreme thirst, frequent urination, and unintended weight loss.

If you have already been diagnosed with acromegaly, contact your care team if your symptoms return or worsen, if you develop side effects from medication, or if you miss scheduled follow-up tests. Early attention to changes gives your doctors the best chance to adjust treatment before complications develop.