Acromegaly

What is acromegaly?

Acromegaly is a rare but serious medical condition. Patients with the condition have already experienced high levels of growth hormone (GH) in the body. The pituitary gland is normally responsible for producing growth hormone.

Tumors on the gland or anywhere else in your body can produce excess growth hormone that leads to acromegaly. Adults with acromegaly may experience:

  • Irregularly-shaped bones
  • Increased organ size
  • Elevated blood sugar levels (hyperglycemia)

 

It is important to speak with your doctor if you detect anything unusual with your body. Making yourself aware of symptoms can help you to stay ahead of the condition and receive the best possible treatment.

What are symptoms of acromegaly?

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People with acromegaly often find that their body parts begin to change and possibly become distorted. Visible changes to look for include:

  • Thick ears and lips
  • A broad nose
  • Enlarged hands and feet
  • An enlarged tongue
  • Gaps between your teeth
  • A jutting brow or jaw
  • A rounded chest (due to expanded rib cage)

 

Skin changes can also occur. Pay close attention to notice any sudden acne, skin tags, swelling under the skin, and/or thickened or oily skin. You may not have every potential body change. It’s also possible that it can take years to notice visible changes.

For longer-term symptoms as the condition progresses, pay attention for any signs of:

  • Excess sweating or body odor
  • Vision troubles (loss of side vision)
  • Headaches
  • Fatigue and low energy
  • Joint pain
  • Sleep problems (sleep apnea)

How does acromegaly affect the body?

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Visible changes are not the only way that too much growth hormone or insulin-like growth factor-1 (IGF-1) can affect the body. The two factors can affect different bodily organs and systems. Make sure to closely monitor your:

  • Dental health. An enlarged jaw or space in between the teeth are symptoms that can be associated with acromegaly. If you notice gaps forming, bite changes, or your teeth don’t line up correctly, speak with your healthcare provider. An enlarged tongue can also lead to speech and breathing problems. Regular dental care can identify these oral changes.
  • Reproductive and sexual health. Acromegaly can cause erectile dysfunction in men, as well as reduced libido and low testosterone. The condition can also lead to enlarged soft tissues. Sexual issues tend to relate to hormonal imbalances, not enlargement.
  • Voice. You may notice snoring or changes in speech due to acromegaly. The condition can cause thickening of the tissues in your vocal cords and throat. The thickening may make your voice sound deeper or hoarser over time.

How does acromegaly compare to similar conditions?

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There are other conditions that may present like acromegaly. The causes and symptoms of the conditions are different, which is why speaking with a healthcare provider helps you in receiving an accurate diagnosis.

  • Gigantism: Excess growth hormone produced before puberty can lead to developing unusually long limbs. Alternatively, acromegaly occurs after puberty when your growth plates are closed.
  • Cushing disease: Excess cortisol causes Cushing disease. Common symptoms are weight gain in the face and torso, easy bruising, diabetes, and having a hump on your back from fat redistribution.
  • Marfan syndrome: Acromegaly develops later than Marfan syndrome. It additionally does not lead to a long, slender build like the genetic condition causes.
  • Paget’s disease of bone: Unlike acromegaly, the disease breaks down the bones and they later regrow in an unusual way. Regrown bones often lead to bone pain, bent legs, and possibly skull enlargement.
  • Achondroplasia: As a gene change that affects bone growth, achondroplasia is the most common form of dwarfism. Acromegaly causes enlargement of features, not a shorter stature and shorter limbs.
  • Weaver syndrome: The rare genetic condition is present from birth and causes rapid growth. Advanced bone age and developmental delays are the hallmarks of someone who has Weaver syndrome. Acromegaly only develops in adulthood.

Speak with your healthcare provider as soon as you notice any unusual symptoms that may require further testing for an accurate diagnosis.

Are certain people at a higher risk of developing acromegaly?

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Multiple endocrine neoplasia, type 1 (MEN1) is the main known risk factor for acromegaly. The rare inherited condition leads to tumors forming and releasing extra hormones in the:

  • Parathyroid glands
  • Pancreas
  • Pituitary gland

 

Acromegaly can run in families in rare instances, possibly occurring in conditions like familial isolated pituitary adenoma (FIPA). FIPA raises the chance of developing pituitary tumors. The majority of people have no known risk factors for acromegaly.

How is acromegaly diagnosed?

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Once your healthcare provider asks about your health history and does a physical exam, it may be determined that you need follow-up testing to determine if you have acromegaly.

  • IGF-1 measurement. The blood test will measure the level of insulin-like growth factor 1 in your blood. Since IGF-1 is sometimes elevated (due to diabetes, pregnancy, and liver or kidney disease), your doctor may order an oral glucose tolerance test (OGTT) and an MRI scan of the pituitary gland to check for the presence of any tumors.
  • MRI or another imaging test. If your doctor does not find a pituitary tumor, they may order scans to check for tumors in other parts of the body. X-rays are used to identify changes to bone growth in the hands and feet.

What is the treatment for acromegaly?

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Even if you cannot cure acromegaly, receiving the right treatment can better control the disease. Treatment should improve symptoms and prevent further complications. Getting treatment helps lower your growth hormone and IGF-1 levels to a healthy range. The good news is, keeping the hormone levels under control can vastly improve your quality of life and reduce the likelihood of encountering long-term health risks.

Treatment options for acromegaly are:

  • Medicines to lower GH or block its effects (used when surgery does not effectively lower hormone levels)
  • Radiation therapy (often used when surgery is not possible to remove the entire tumor and if medicines are not highly effective)

Your healthcare provider might determine that the best treatment plan for you involves a mix of the treatments. How they determine that will be based on the tumor size and location, age, the severity of any symptoms, and a person’s overall health.

What are common complications of acromegaly?

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If left untreated, acromegaly can result in complications such as:

  • Narrowed arteries (greater risk of heart attack or stroke)
  • Heart failure
  • Higher risk of certain cancers (like breast, prostate, colon, thyroid, stomach)
  • Growths on the colon (polyps)
  • Irregular or missed periods
  • Infertility
  • Reduced sexual desire
  • Irregular vaginal bleeding
  • Insulin resistance
  • High cholesterol
  • Carpal tunnel syndrome
  • Spinal cord compression or fractures
  • Depression

Early treatment for acromegaly can improve your overall quality of life and outlook moving forward. If you have any questions or concerns, speaking with a healthcare professional is highly recommended for the best possible outlook.

What is the outlook for people with acromegaly?

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Many people who are diagnosed with acromegaly and receive treatment have life expectancies that are close to those without the condition. Discussing any of your options with a doctor is the best way to figure out which treatment plan is most suitable for you.

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