What is Acromegaly?

Acromegaly is a hormonal disorder that results when the pituitary gland produces excess growth hormone (GH). It most commonly affects middle-aged adults and can result in serious illness and premature death. Once recognized, acromegaly is treatable in most patients, but because of its slow and often insidious onset, diagnosis is often delayed.

The name acromegaly comes from the Greek words for "extremities" and "enlargement" and reflects one of its most common symptoms, the abnormal growth of the hands and feet. Soft tissue swelling of the hands and feet is often an early feature, with patients noticing a change in ring or shoe size. Gradually, bony changes alter the patient's facial features: the brow and lower jaw protrude, the nasal bone enlarges, and spacing of the teeth increases. Some patients also notice excessive sweating, skin tags, hoarseness, enlargement of the tongue, snoring and sleep apnea, and carpal tunnel syndrome.

Acromegaly is a rare but serious medical condition that occurs when the body produces high levels of growth hormone. Acromegaly affects the body's bones and tissues and causes them to grow in abnormal ways. The most common treatments for acromegaly are surgery, medication and radiation therapy

Acromegaly itself is usually not fatal. The complications of acromegaly, such as heart problems, high blood pressure, and diabetes, can be life-threatening. Successful treatment, however, will usually restore normal health.

Acromegaly is caused by an overproduction of the hormones that control growth.

These hormones include growth hormone, growth hormone-releasing hormone (GHRH), and insulin-like growth factor 1 (IGF-1). In most cases, a benign tumor is applying pressure to your pituitary gland, causing it to produce and distribute these hormones unnecessarily.

In rare cases, a tumor elsewhere in your body, such as the lungs, adrenal glands, or pancreas, can lead to an overproduction of growth hormone, resulting in symptoms of Acromegaly. Non-pituitary tumors found in other areas of the body like the abdomen and chest can also cause Acromegaly in extremely rare cases. The pituitary gland responds to a stimulus to produce GH. For example, some hypothalamic tumors may secrete growth hormone-releasing hormone (GHRH), which tells the body to produce GH.

Sometimes, Acromegaly can be caused by an increased growth hormone production from outside the pituitary gland, such as from neuroendocrine tumors like small cell lung cancer or carcinoid tumors.

Acromegaly is not an easy diagnosis, and it is frequently missed by doctors. Some of the signs and symptoms of acromegaly are very distinctive. Others are subtle and can be missed or misinterpreted. Symptoms are not always recognized as acromegaly because they develop so slowly. Once the diagnosis is suspected, you are usually referred to a specialist in hormonal disorders (endocrinologist).

Blood tests are used to help confirm your diagnosis. Measurement of IGF-1 level is considered the most reliable test for acromegaly. Another test measures levels of IGF-binding protein-3 (IGFBP-3), a protein that interacts with IGF-1. This test is usually used to help confirm the diagnosis of acromegaly.

Some health care providers measure how suppressible diabetic glucose levels. Blood glucose (sugar) suppresses growth hormone. The level of growth hormone in your blood is measured after you drink a sugary drink. The resulting high blood sugar level suppresses the growth hormone level in healthy people but not in people who have too much growth hormone.

A CT scan or MRI of the head is done to look for a pituitary tumor.

The pituitary gland is located at the base of the brain, behind the bridge of the nose. It is about one-half inch (1.25 cm) in diameter. The pituitary gland rests within a hollowed out area of the sphenoid bone called the sella turcica.

Despite its small size, the pituitary gland plays a key role in the body’s hormonal or endocrine system by controlling the production and release of many different hormones throughout the body. These hormones are involved in your growth, sexual development and reproductive function, metabolism, and response to stress.

The pituitary gland controls the function of the thyroid and adrenal glands, with effects on metabolism, energy levels, and the balance of salt and water in the body.

No, in over 99% of patients, adenomas are NOT cancerous. Although these types of tumors are benign, they can create problems because of their size. Problems associated with pituitary tumors can lead to decreased vision, loss of normal pituitary function (hypopituitarism) and/or cause headaches due to excessive hormone production.

Acromegaly sometimes runs in families, but most of the time it's not inherited. Adenomas usually spontaneously develop because of a genetic change in a cell of the pituitary gland. This change causes uncontrolled growth of the affected cells, creating the tumor.

The three types of medications that treat the symptoms of acromegaly fall into three categories: Growth hormone receptor blockers, Somatostatin analogs, and dopamine antagonists.

Growth hormone receptor blockers represent the newest category of drugs for the treatment of acromegaly. These drugs block the places on cells where growth hormone “docks.” If the excess growth hormone in the blood can’t dock on a cell, it can’t cause abnormal growth of the cell.

Pegvisomant, the only U.S. Food and Drug Administration-approved treatment for acromegaly normalizes IGF-1 level in over 90% of people.

Somatostatin analogs act like a natural hormone, which stops the secretion of growth hormone. Octreotide, the most common drug in this group, works in most people who take it. You must inject yourself with this medication either three times per day under the skin or once per month in the muscle.

Dopamine agonists stop the secretion of growth hormone by stimulating dopamine (a chemical in the brain) activity.

Cabergoline continues to gain popularity due to the fact that its oral route administration and lower price tag than hormone receptor blockers or somatostatin analogs.

Both acromegaly and gigantism conditions are characterized by the presence of excess growth hormone in the blood. Acromegaly occurs in adults after the bones have finished growing during puberty. Gigantism, on the other hand, occurs in children before the bones have finished growing.

Gigantism which goes undiagnosed before a child’s growth plates close (closure of the epiphyses) can potentially turn into Acromegaly, although this is even more rare than either Gigantism or Acromegaly. If you suspect your child may have both, please speak to your Endocrinologist.

Signs and symptoms of acromegaly reverse or disappear in remission. Although cures for acromegaly can be a lifelong condition.

Surgery can remove your hormone-secreting tumor completely or partially. Even after surgery, you may require additional therapies.

Drug therapy, an effective way to treat the symptoms of acromegaly before and after surgery, can shrink tumors in preparation for surgery. Some drugs block the production of growth hormones, others prevent growth hormone from stimulating the production of IGF-1, and via dopamine, stimulation stops GH production in people with this rare disease.

Drug and/or radiation therapy typically goes on for several years. Even after successful therapy, you may want to see your health care provider regularly to check your GH and IGF-1 levels.

To send acromegaly into remission, care providers prescribe a combination of treatments since no one series of therapies works best for everyone and Radiation serves as the final treatment option for the treatment of the symptoms that persist after surgery and drug therapy.

Radiation can be the first treatment for patients who cannot undergo surgery, due to the size and/or the location of their tumor and offers a solution for patients with other medical conditions that interfere with the surgery or the size and/or the location of their tumor.

The majority of people who undergo radiation therapy permanently lose function of their pituitary gland. These people must take hormone replacement for the rest of their lives. Drug or radiation therapy usually goes on for years. Radiation therapy can take anywhere from 18 months to several years.

No one series of therapies works best for everyone and a combination of treatments is necessary for the remission of Acromegaly. Usually, surgery for removal of the hormone-secreting tumor is the first step in treatment.

Drug therapy is available to treat the symptoms of acromegaly and shrink tumors in preparation for surgery. Some drugs block the production of growth hormones while others prevent GH from stimulating the production of IGF-1.

The final treatment option for symptoms of acromegaly that persist after surgery and drug therapy is radiation.

Radiation is often the first treatment for people who cannot undergo surgery because of other medical conditions or the size and/or the location of their tumor.

A majority of people who undergo radiation therapy permanently lose function of their pituitary gland. These people must take hormone replacement for the rest of their lives. Drug or radiation therapy usually goes on for years. Radiation therapy can take anywhere from 18 months to several years.

Acromegalic cardiomyopathy is the leading cause of morbidity and all-cause mortality in patients with acromegaly. Though acromegaly is a rare condition, the associated derangements are vast and severe. Stemming from an increase in circulating growth hormone (GH) and insulin-like growth factor-1 levels (IGF-1), acromegalic cardiomyopathy results in pathological changes in myocyte growth and structure, cardiac contractility, and vascular function. These molecular changes manifest commonly as biventricular hypertrophy, diastolic and systolic dysfunction, and valvular regurgitation. Early recognition of the condition is paramount, though the insidious progression of the disease commonly results in a late diagnosis. Biochemical testing, based on IGF-1 measurements, is the gold standard of diagnosis. Management should be centered on normalizing serum levels of both IGF-1 and GH. Transsphenoidal resection remains the most cost-effective and permanent treatment for acromegaly, though medical therapy possesses benefit for those who are not surgical candidates. Ultimately, achieving control of hormone levels results in a severe reduction in mortality rate, underscoring the importance of early recognition and treatment.

Acromegaly affects many organs, bones, and other tissues, including the skin, liver, kidneys, thyroid, heart, joints, and spine.

Conversely, acromegaly is associated with excess sweating and increased SSR (4, 8). The changes in GHD may be a result of atrophy of the eccrine sweat glands because of lack of stimulation of either GH or IGF-I, or both. Alternatively, it could be a reduction in sweat gland function.

Acromegaly is a disorder that occurs when your body makes too much growth hormone (GH). Produced mainly in the pituitary gland, GH controls the physical growth of the body. In adults, too much of this hormone causes bones, cartilage, body organs, and other tissues to increase in size.

The results indicate that hair loss is indeed a problem experienced by many patients who undergo surgery for acromegaly. Of those included in the study, more than half of participants (54%) experienced some level of hair loss between 3 and 6 months following their procedure.

Surgery is usually the first treatment offered to patients with acromegaly. By removing the pituitary tumor (also called a pituitary adenoma) that's making too much growth hormone (GH), the symptoms of acromegaly should subside and GH levels should return to normal.

Acromegaly can be put into remission. This means that the disease is stopped and many of the signs and symptoms reversed. But, acromegaly can be a lifelong disease.

Patients with untreated acromegaly had increased body cell mass and normal or modestly increased proximal muscle strength, whereas their grip strength was reduced. After biochemical improvement and remission, body composition was normalized, hand grip strength was increased, whereas proximal muscle fatigue increased.

The elevated blood GH levels cause the liver in turn to make excess insulin-like growth factor-1 (IGF-1), a hormone that has wide effects throughout the body.

Reduction of sex hormones, luteinizing hormone (LH) and follicle-stimulating hormone (FSH). In men, this can lead to a low testosterone level, causing decreased sexual drive and impotence. In some cases, there can be loss of body and facial hair.

Gigantism and acromegaly are syndromes of excessive secretion of growth hormone (hypersomatotropism) that are nearly always due to a pituitary adenoma. Before closure of the epiphyses, the result is gigantism. Later, the result is acromegaly, which causes distinctive facial and other features.

We have gathered information for patients to include testing information, trusted physicians, surgery FAQs, apps, travel and prescription assistance, pain management, articles and resources for discrimination and apply for disability.

>> Learn more about Patient Support