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What does acromegaly affect: Acromegaly – Symptoms and causes

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Acromegaly – NIDDK

On this page:

  • What is acromegaly?
  • How common is acromegaly?
  • Who is more likely to develop acromegaly?
  • What are the complications of acromegaly?
  • What are the symptoms of acromegaly?
  • What causes acromegaly?
  • How do doctors diagnose acromegaly?
  • How do doctors treat acromegaly?
  • Clinical Trials for Acromegaly

What is acromegaly?

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. Common changes in appearance include enlarged or swollen nose, ears, hands, and feet.

The pituitary gland sits at the base of the brain.

How common is acromegaly?

Acromegaly is rare. Scientists estimate that about 3 to 14 of every 100,000 people have been diagnosed as having acromegaly. 1

Who is more likely to develop acromegaly?

Acromegaly is most often diagnosed in middle-aged adults, but symptoms can appear at any age. In children, too much growth hormone causes a condition called gigantism rather than acromegaly. Gigantism occurs when excess GH begins before the end of puberty, when children’s growth plates fuse or close. Having too much GH before the growth plates close causes children to grow tall in height.

What are the complications of acromegaly?

Acromegaly is treatable in most people. But because symptoms come on slowly, health problems can develop before the disorder is diagnosed and treated.

Health problems can include

  • type 2 diabetes
  • high blood pressure
  • heart disease
  • sleep apnea
  • arthritis
  • carpal tunnel syndrome
  • other conditions affecting the bones and muscles

People with acromegaly also have an increased risk for colon polyps, which may develop into colon cancer if not removed.

Some people with acromegaly may have a genetic condition that can lead tumors to develop in different parts of their bodies. Increased GH can cause these other tumors to grow.

Untreated, acromegaly can lead to serious health problems and early death. But when successfully treated, symptoms generally improve and may go away altogether. Life expectancy may return to normal.2

What are the symptoms of acromegaly?

Symptoms of acromegaly can vary from person to person. Common changes in physical appearance include

  • hands and feet become larger and swollen—you may notice a change in ring or shoe size, especially shoe width
  • lips, nose, and tongue become larger
  • bone changes: brow and lower jaw jut out, bridge of the nose gets bigger, and space between teeth increases
  • skin becomes thick, coarse, and oily
  • sweating and skin odor increase
  • voice becomes deeper
  • skin tags—small, usually flesh-colored growths of skin that have a raised surface—may get larger or darker

Other common symptoms include

  • headaches
  • joint aches
  • vision problems

What causes acromegaly?

Acromegaly develops when the pituitary gland releases too much GH into the body over a long period of time. When GH enters the blood, this signals the liver to produce another hormone, called insulin-like growth factor I (IGF-I). IGF-I is the hormone that actually causes bones and body tissue to grow. High levels of this hormone also cause changes in how the body processes blood glucose (blood sugar) and lipids (fats), which can lead to type 2 diabetes, high blood pressure, and heart disease.

In more than 9 out of 10 cases, acromegaly is caused by a tumor in the pituitary gland, called a pituitary adenoma.3 More rarely, the cause may be a tumor in another part of the body.

Although scientists don’t know what causes these tumors to develop, genetic factors may play a role. In young adults, acromegaly has been linked to defects in certain genes.

Pituitary tumors

Pituitary tumors are almost always benign, or noncancerous. Some tumors grow slowly, and symptoms of too much GH may not be noticed for many years. Other tumors may grow rapidly.

Depending on its size and location, the tumor may press against other pituitary tissue. Possible effects include

  • changes in menstruation in women
  • erectile dysfunction in men
  • changes in thyroid hormone, which can affect weight, energy levels, hair, and skin
  • decreases in cortisol, which can cause weight loss, dizziness, tiredness, low blood pressure, and nausea

A tumor that grows large in size may also press against nearby parts of the brain. This can lead to other symptoms, such as headaches and vision problems.

Some pituitary tumors that create growth hormone can also increase the levels of other hormones in the body. For example, the tumor may produce prolactin, the hormone that prompts the mammary glands to produce milk. This can lead to breast milk discharge in women.

Nonpituitary tumors

Rarely, acromegaly is caused by tumors located in the hypothalamus—a small area of the brain near the pituitary gland, pancreas, lungs, or other parts of the chest or abdomen. Some of these tumors make growth hormone themselves. But more often, the tumors produce growth hormone-releasing hormone (GHRH), a hormone that signals the pituitary gland to make growth hormone.

How do doctors diagnose acromegaly?

Blood tests

Doctors most often diagnose acromegaly by ordering two blood tests that help determine if your body is making too much GH.

  • IGF test. Levels of GH in the blood can change throughout the day. A reliable way to track GH in the body is by measuring the level of IGF-I in the blood. In most cases, a high IGF-I level suggests that you have acromegaly.
  • Oral glucose tolerance test. To confirm the diagnosis, your doctor will order an oral glucose tolerance test. For this test, you will drink a sugary liquid. A health professional will then test your blood every half hour for 2 hours to measure growth hormone levels. The sugar in the drink will normally cause GH levels to fall. But if your body is making too much of the hormone, these levels will not go down enough—thereby confirming the diagnosis of acromegaly.

Imaging tests

If the blood tests confirm that your body is making too much GH, your doctor will conduct imaging tests to locate and measure the tumor that may be causing the problem. Two commonly used tests are

  • Magnetic resonance imaging. The preferred test for viewing a pituitary tumor is the magnetic resonance imaging (MRI) scan. The MRI scan uses radio waves and magnets to create detailed images of your internal organs and soft tissues without x-rays.
  • Computed tomography scan. If an MRI is not a good option for you (for example, if you have a pacemaker or other implant that has metal), your doctor may order a computed tomography (CT) scan instead. The CT scan uses a combination of x-rays and computer technology to create images of your organs and other internal parts of your body.

An MRI can show the location and size of a pituitary tumor.

If the imaging test doesn’t find a pituitary tumor, your doctor will look for nonpituitary tumors as the cause of your high GH levels.

How do doctors treat acromegaly?

Treatment options include surgery, medicines, and radiation therapy. The goals of treatment are to control tumor size, return GH and IGF-I levels back to normal, improve symptoms, and manage related health problems. No single treatment is right for everyone. Your doctor will recommend a treatment plan that works for you, depending on factors such as your age, tumor size, severity of symptoms, GH and IGF-I levels, and health status.

Surgery

Doctors can remove most pituitary tumors using a method called transsphenoidal surgery. The operation is done through the nose and sphenoid sinus, a hollow space in the skull behind the nasal passages and below the brain. Two approaches to this surgery are

  • with a microscope—a magnifying tool
  • with an endoscope—a thin, lighted tube with a tiny camera

In both approaches, the surgeon uses advanced MRI imaging to scan the area around the tumor before surgery. He or she then makes a small cut inside your nostril to view the area and remove the tumor using tiny, special tools. In microscopic surgery, the surgeon uses a microscope to magnify the area. In endoscopic surgery, an endoscope camera sends images to a television monitor instead. Risks and results are similar for both approaches.3

When the tumor that is creating too much GH is not located in the pituitary gland, other types of surgery are used to remove the tumor. Removing these nonpituitary tumors also lowers GH levels and improves acromegaly symptoms.

Risks. Complications from surgery can include bleeding, cerebrospinal fluid leaks, meningitis, sodium (salt) and water imbalance, and low levels of pituitary hormones.3

Outcomes. The surgery is considered a success if blood levels of GH and IGF-I return to normal after 12 weeks. The cure rate right after surgery is about 85 percent for small tumors and 40 to 50 percent for large tumors. 3

When successful, the surgery relieves pressure on nearby areas of the brain and causes GH levels to drop right away. Soft tissue swelling may get better within a few days but facial changes may take longer to improve.

Surgery is most successful in people with smaller pituitary tumors. Success largely depends on the skill and experience of the surgeon, as well as the location of the tumor. Even experienced surgeons may not be able to remove the tumor if it’s too close to parts of the brain where surgery would be risky. However, surgeons may be able to remove part of the tumor.

Postsurgery treatments. In most cases, levels of GH and IGF-I improve but don’t go back to normal. If levels of these hormones are still too high or begin to rise again, you may need further treatment. Most often, this will involve taking medicines. In some cases, your doctor may recommend a second surgery.

Medicines

Currently, three types of medicines are used to treat acromegaly, but they are not a cure. The medicines may be used alone or in combination with each other.

Somatostatin analogs. The medicines most often used to treat acromegaly are called somatostatin analogs (SSAs). These drugs curb the release of GH and may also reduce the size of the pituitary tumor. Several studies have shown that these drugs are safe and effective for long-term treatment. The medicines are delivered by injection, but scientists are currently studying other options, such as pills.4 The most common side effects of SSAs are cramps, gas, and diarrhea. These effects are usually mild and go away over time. Some people may develop gallstones that usually do not cause symptoms. Hair loss is possible and, in rare cases, permanent. Control of blood sugar usually improves but, rarely, may worsen.

Dopamine agonists. These medicines inhibit GH production and tumor growth, but not as well as SSAs do. Dopamine agonists are most likely to work in people who have mild GH excess and those who have both acromegaly and hyperprolactinemia (too much of the hormone prolactin). The medicines are taken by mouth. Side effects can include nausea, stuffed nose, tiredness, headache, dizziness when standing, nightmares, and mood changes.

Growth hormone-receptor antagonists. Unlike the other two medicines, GH-receptor antagonists do not stop the body from making too much GH. Instead, they block GH from signaling the body to make more IGF-I. The drug is taken in the form of a daily injection under the skin that patients can administer themselves. Side effects can include liver problems.

Radiation therapy

The third treatment option is radiation therapy, which uses high-energy x-rays or particle waves to kill tumor cells. This type of treatment may be recommended if surgery isn’t possible or fails to remove all tumor tissue, and medicines are not an option or working for you.

Stereotactic. The preferred type of radiation therapy is stereotactic radiation therapy, which uses 3-D imaging to precisely aim high doses of radiation to the tumor from various angles. 3 The treatment can sometimes be done in a single session, reducing the risk of damage to nearby tissue. However, a single dose may not work for very large tumors and tumors located close to nerves that affect vision.

Conventional. The second option is conventional radiation therapy, which also targets the tumor with external beams. This type of radiation therapy delivers small doses of radiation in a series of treatments over 4 to 6 weeks.

Radiation therapy uses high-energy rays to destroy tumor cells in the pituitary gland.

As radiation treatment lowers GH and IGF-I levels over time, it may take years for this treatment to noticeably improve acromegaly symptoms. Your doctor is likely to prescribe medicines while you wait for GH and IGF-I levels to go back to normal and for symptoms to improve.

All forms of radiation therapy cause other pituitary hormones to slowly decrease over time. About half of people treated with radiation therapy will need hormone replacement after treatment ends. Radiation can also impair a patient’s fertility.

Vision loss and brain injury are rare complications. Rarely, other types of tumors can develop many years later in areas that were in the path of the radiation beam.

Clinical Trials for Acromegaly

The NIDDK conducts and supports clinical trials in many diseases and conditions, including endocrine diseases. The trials look to find new ways to prevent, detect, or treat disease and improve quality of life.

What are clinical trials for acromegaly?

Clinical trials—and other types of clinical studies—are part of medical research and involve people like you. When you volunteer to take part in a clinical study, you help doctors and researchers learn more about disease and improve health care for people in the future.

Researchers are studying many aspects of acromegaly and gigantism, such as

  • use of medicine to treat gigantism in children and adolescents
  • genetic factors that may cause pituitary tumors to develop, and how to treat the tumors and related complications in children and adults

Find out if clinical studies are right for you.

What clinical studies for acromegaly are looking for participants?

You can view a filtered list of clinical studies on acromegaly that are open and recruiting at
www.ClinicalTrials.gov. You can expand or narrow the list to include clinical studies from industry, universities, and individuals; however, the NIH does not review these studies and cannot ensure they are safe. Always talk with your health care provider before you participate in a clinical study.

References

Acromegaly | Johns Hopkins Medicine

What is acromegaly?

When your pituitary gland makes too much growth hormone, abnormal growth occurs. This is called acromegaly. The abnormal
growth starts in your hands and feet, as soft tissue begins to swell. This rare disease
affects mostly middle-aged adults. It can lead to severe illness and even death if not
treated.

In children, too much growth
hormone causes a condition called gigantism. This leads to a large increase in
height.

What causes acromegaly?

Acromegaly happens when the
pituitary gland makes too much growth hormone for a long time. Several reasons may cause
this extra amount of hormone to be made. The most common is a noncancer (benign) tumor
in the pituitary gland. Tumors in other parts of the body can also cause acromegaly.
But that is rare.

What are the symptoms of acromegaly?

Each person’s symptoms may vary. They depend on how long you have had
the disease. Symptoms may include:

  • Swelling of your hands and feet. You
    may find your rings no longer fit and you need to buy larger shoes.
  • Larger lips, nose, and tongue, as your
    bones grow
  • Larger jaw that sticks out more
    (protrudes)
  • Thicker body hair
  • Thicker, darker skin and skin
    tags
  • More sweat and body odor
  • Deeper voice
  • Larger chest as your ribs get
    thicker
  • Joint pain
  • Degenerative arthritis
  • Increased size of your heart and other
    organs
  • Strange feelings and weakness in your
    arms and legs, including carpal tunnel syndrome
  • Snoring and breaks in breathing during
    sleep (sleep apnea)
  • Lack of energy (fatigue) and
    weakness
  • Headaches
  • Loss of eyesight
  • Irregular menstrual cycles
    (women)
  • Breast discharge (women)
  • Impotence (men)
  • Enlarged thyroid gland

These symptoms may look like other health problems. Always see
your healthcare provider for a diagnosis.

How is acromegaly diagnosed?

Symptoms may not be seen right
away. So acromegaly is often not found until years later. Your healthcare provider will
take your health history and give you a physical exam. In addition, you may need:

  • Photos
    taken regularly over the years.     These are used to see physical changes.
  • X-rays. These are done to see bone thickening.
  • Blood
    tests.     These are done to check your growth hormone level and levels of other
    related hormones.
  • MRI or
    CT scan.     These can help find tumors.

How is acromegaly treated?

Treatment will depend on your symptoms, age, and general health. It
will also depend on how severe the condition is.

Treatment of acromegaly depends on
what is causing the disease. The main goal of treatment is to get your growth hormone
levels back to normal.

Most cases are caused by benign
tumors on the pituitary gland. Others are caused by tumors in the pancreas, lungs, or
adrenal glands. Treatment may include:

  • Surgery to remove or reduce the size
    of a tumor
  • Radiation therapy
  • Shots (injections) of medicines to
    block growth hormone

What are the possible complications of acromegaly?

If acromegaly isn’t treated, it can lead to several problems. These may include:

  • Heart disease
  • Arthritis
  • Diabetes and impaired glucose
    tolerance
  • High blood pressure
  • Vision problems

The disease also raises your risk for colon polyps. These are small growths on the lining of your colon. They may lead to colorectal cancer.

Living with acromegaly

You should see your healthcare
provider on a regular basis. Your provider can make sure your treatment is working. Your
provider can also check for any problems. Early treatment can then be started if
needed.

When should I call my healthcare provider?

Tell your healthcare provider if your symptoms get worse or you have new symptoms.

Key points about acromegaly

  • Acromegaly is a rare disease. It occurs when your pituitary gland makes too much growth hormone for a long time. That causes abnormal growth.
  • Acromegaly starts in the hands and feet. It affects mostly middle-aged adults.
  • Most people with this condition have a
    noncancer (benign) tumor in the pituitary gland.
  • Symptoms depend on how long you have
    had the disease. Symptoms can be missed. So the disease is often not diagnosed until
    years later.
  • If not treated, acromegaly can lead to
    heart problems, arthritis, diabetes, vision problems, high blood pressure, or even
    death.

Next steps

Tips to help you get the most from a visit to your healthcare provider:

  • Know the reason for your visit and what you want to happen.
  • Before your visit, write down questions you want answered.
  • Bring someone with you to help you ask questions and remember what your provider tells you.
  • At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you.
  • Know why a new medicine or treatment is prescribed, and how it will help you. Also know what the side effects are.
  • Ask if your condition can be treated in other ways.
  • Know why a test or procedure is recommended and what the results could mean.
  • Know what to expect if you do not take the medicine or have the test or procedure.
  • If you have a follow-up appointment, write down the date, time, and purpose for that visit.
  • Know how you can contact your provider if you have questions.

Acromegaly

Departments and centers

Methods of treatment

Methods of diagnosis

Diseases and symptoms

Growth hormone is a hormone produced in the pituitary gland. The main function of growth hormone is to stimulate the growth of various body tissues.

The biological effects of the hormone are as follows: stimulation of the linear dimensions of the body, support for the integrity of organ tissues, acceleration of the growth of bones and soft tissues (together with insulin growth factors), regulation of protein secretion, slows down the excretion of sodium and potassium in the urine, regulation of glucose metabolism and fat, increased sweating.

Acromegaly – is an endocrine disease resulting from chronic excess production of growth hormone. It is characterized by excessive disproportionate growth of cartilage, bones and internal organs.

Causes of acromegaly:

  1. Tumor formation of the pituitary gland excessively producing somatotropic hormone (growth hormone).
  2. Neuroendocrine tumors outside the pituitary gland (tumor of the mediastinum, lung, pancreas.)
  3. Malignant tumors of the bronchi, organs of the gastrointestinal tract, pancreas.
  4. Genetic syndromes (MEN-1 syndrome, McCunean-Albright syndrome, Carney complex)

Pathogenesis of acromegaly: Normally, the pituitary gland produces growth hormone, or somatotropin (GH). This hormone affects the growth zones – epiphyseal plates, areas of growing tissue in tubular bones. As a result, cartilage tissue is gradually replaced by bone and tubular bones are lengthened. In people who do not have these growth zones closed (mostly children), with an excess of growth hormone, an increase in the linear dimensions of the body (height, limb length) is noted. In adults, these growth zones are closed and the clinic changes fundamentally, there is a thickening of the bones, their deformation and an increase in the size of the organs. The appearance of the patient acquires a characteristic appearance.

Growth hormone has a contrainsular effect, which leads to an increase in blood sugar levels, protein synthesis increases, amino acid transport to muscle cells increases, internal organs work more actively and become larger.

Complaints. The first thing that most patients with acromegaly pay attention to is, of course, a change in appearance: there is an increase in the size of the lips, nose, tongue (sometimes it ceases to fit in the mouth, teeth marks appear on the tongue), thickening of the lower jaw, superciliary arches, toes and hands, excessive sweating. There may be complaints associated with the localization of the tumor (with pituitary adenoma (especially if they are large) – this is a headache, dizziness, blurred vision, visual fields may fall out, epilepsy is possible). There is a violation of carbohydrate metabolism (increased blood sugar), blood pressure usually also rises. In women, there is a violation of the ovarian-menstrual cycle, a decrease in libido. Men have erectile dysfunction.

As the disease progresses, symptoms progress. Changes in appearance are increasing, damage to internal organs (heart failure, poorly controlled arterial hypertension, which often causes vascular catastrophes (heart attacks, strokes), complications of diabetes mellitus) join this, a clinic of damage to the musculoskeletal system appears.

Examination for acromegaly: diagnosis of acromegaly confirmed by investigations:

  1. Investigation of somatotropic hormone and insulin-like growth factor-1,
  2. Study of prolactin, ACTH, cortisol, TSH, ST4, FSH, LH.
  3. In doubtful cases and when monitoring the activity of somatotropinoma after treatment, an oral glucose tolerance test (OGTT) is performed – normally, after taking glucose, suppression of GH secretion is noted, with acromegaly, GH does not decrease below 1 ng / ml.
  4. An MRI of the pituitary gland is done to visualize the tumor.
  5. Determination of visual fields, examination of the fundus, to assess the damage to the visual apparatus.
  6. If necessary, an additional examination is carried out for suspected GH-secreting tumors that are located outside the pituitary gland.

(PET CT, colonoscopy, CT of the chest, fibrobronchoscopy, examination of the intestines)

If a carcinoid origin of growth hormone excess is suspected, an oncologist joins the additional examination and treatment.

Treatment of acromegaly

The main treatment is surgery and radiotherapy.

Conservative therapy is carried out as a preoperative preparation, in the postoperative period and when it is impossible to carry out a radical treatment of the tumor. Somatostatin analogues (Octreotide, Lanreotide) are used. In addition to them, dopamine agonists (cabergoline, bromocriptine) can be prescribed. Drugs are often prescribed for a long period (5-7 years or more). The drugs can be canceled with stable normalization of the level of somatotropic hormone and insulin-like growth factor -1, after a negative oral glucose tolerance test.

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Attention, Acromegaly! — “InfoMedPharmDialogue”

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Attention, Acromegaly!Nataliya2021-12-14T10:40:35+03:00

ATTENTION, Acromegaly!

Dear friends!

InfoMedPharm Dialog and pharmaceutical company Pfizer present a joint project dedicated to modern diagnostic and treatment options for acromegaly.

Acromegaly is a rare neuroendocrine disease. Late diagnosis and lack of adequate therapy lead to a significant loss in the quality of life and a decrease in the life expectancy of patients. People with acromegaly die three times more often and live 6-8 years less than the average inhabitant of the Earth. With acromegaly, cardiovascular risks increase significantly (3-4 times), the most common cause of death in patients is cardiovascular events and disorders in the respiratory system. According to expert estimates, in Russia the average time to diagnosis is 8.7 years, and sometimes a patient waits for a diagnosis for more than 10 years.

Such a prolonged progression of the disease without proper treatment triggers irreversible processes, increasing the risk of death.*

It is with the aim of preventing the development of serious complications of acromegaly, early verification of the diagnosis and timely initiation of treatment that the project “Attention, Acromegaly!” was conceived and implemented. As part of the project, we share with you information about the features of the diagnosis and treatment of acromegaly. How to suspect a disease? What examinations should the patient be sent to? How to confirm the diagnosis? What are the current treatment options for acromegaly? On the project page you will find answers to all these questions.

 *According to A.V. Andreeva, head of the endocrinology department
GBUZ "GKB im. V.V. Veresaeva DZM. The data is given in the article
"Overcoming clinical inertia" (Paradigm. Special issue: endocrinology,
04.2021, https://imfd.ru/2021/05/17/rpeodaklininertno/)

SYMPTOMS OF ACROMEGALIA

WORRY*

90 143

Drowsiness

51% of patients

SHIPPING

80% of patients patients

NIGHT APNEA

APPEARANCE CHANGED*