Acromegaly is a rare hormonal disorder that causes the feet, hands, and bones to grow excessively. In fact, the term acromegaly means enlargement of the extremities.

This condition typically affects adults, but it can occur anytime after puberty. If left untreated, acromegaly can lead to life-threatening health complications. However, if treated early on, individuals diagnosed with acromegaly can expect to lead a healthy life.

Causes of Acromegaly

Growth hormone (GH) is a chemical substance that is made in the pituitary gland. This hormone is essential for growth and development in children and in adults, helping to maintain healthy bones and muscles. Sometimes, an individual may produce too much growth hormone, due to:

  • A tumor in the pituitary gland (roughly 95% of acromegaly diagnoses)
  • A tumor located in another area of the body, such as the lungs (this constitutes a smaller percentage of acromegaly diagnoses). These tumors may produce GH themselves or may produce a hormone called growth hormone-releasing hormone that then stimulates the pituitary gland to produce more GH.

Symptoms of Acromegaly

The most common symptom of acromegaly is enlargement of the feet and/or hands. Individuals may notice the need for a larger shoe size or that a ring no longer fits. Some individuals may even notice a change in facial features due to bone enlargement, such as an enlarged nose or a protruding jaw.

Symptoms can vary from person to person and may include the following:

  • Achy joints
  • Carpal tunnel syndrome
  • Sleep apnea due to airway obstruction
  • Sweating more than usual and excessive body odor
  • Headaches
  • Fatigue
  • Skin that begins to take on a rough texture and becomes more oily than usual
  • Enlarged sinuses and vocal chords, which can lead to a deepening of the voice
  • In men, erectile dysfunction
  • In women, abnormalities in the menstrual cycle

Symptoms of acromegaly may develop slowly, making them difficult to detect. For this reason, signs of acromegaly may go unnoticed for a long time. It’s very important to treat acromegaly early in order to receive proper care. If you notice any symptoms of acromegaly, make an appointment with your doctor.

What to Expect at Your Appointment

During your appointment, your doctor will ask you questions about your symptoms and your medical history before performing a physical examination. In order to confirm a diagnosis of acromegaly, your doctor will want to perform the following tests:

  • GH and IGF-I hormone test - For this test, you will be asked not to eat for at least eight hours, overnight. In the morning, your doctor will collect a blood sample, which will be used to measure the levels of growth hormone and insulin-like growth factor 1 (IGF-1) in your system. High levels of these hormones can be an indication of acromegaly.
  • Growth hormone suppression test - You will be asked to not eat or drink for at least 10 hours before the test. Your doctor will then give you a sugar solution to drink, which must be consumed within five minutes. Your doctor will take a blood sample before and after drinking the solution. Consistent levels of growth hormone after drinking the solution can be an indication of acromegaly.
  • MRI scan - Your doctor may prescribe an MRI scan in order to locate and measure the size of a tumor in the pituitary gland. If no tumor is found in the pituitary gland, then doctors will know to look for a tumor in other areas of the body that might be responsible for the overproduction of growth hormone.

Non-surgical Treatments for Acromegaly

The goals of acromegaly treatment are to:

  • Decrease the production of growth hormone
  • Limit the effects of the pituitary tumor

Successful treatment of acromegaly requires a dedicated team of experienced specialists. At MedStar Washington Hospital Center, our acromegaly experts are part of the only multidisciplinary team of its kind in the Washington, DC, area. Patients have access to neurosurgeons experienced with pituitary disorders, a pituitary endocrinologist, a neuro ophthalmologist, otolaryngology, office visits, diagnostic testing, and surgery - all in the same location.

“The ability to see all treating doctors in one facility, usually on the same day, [allows for] collaboration between the treating staff in real-time.” - Dr. Edward Fiore Aulisi, Chairman of the Department of Neurosurgery & Medical Director of the MedStar Neuroscience Intermediate Care Unit

As treatments for acromegaly have advanced, it has become more common that medication may be prescribed before surgery is recommended. Medication may be used to either significantly reduce the amount of growth hormone production or to block the effects of growth hormone. However, some patients may benefit significantly from a combination of medication and surgical intervention.

If the patient does not respond to medications, and/or the tumor is invasive, complete surgical removal of the tumor may not be possible. In this case, patients will undergo radiation therapy to target remaining tumor cells and to slow the production of growth hormone. Radiation may cause a decrease in the production of other hormones produced by the pituitary gland. If this happens, patients may be prescribed hormone replacements.

There is no one treatment for acromegaly that will benefit every patient. Treatment plans should be tailored to each individual patient, depending on his/her symptoms and the unique diagnosis.

Surgical Treatment for Acromegaly and Post-Treatment

The type of surgery performed will depend on the size, extent, and location of the tumor. The tumor can be removed using one of two techniques:

  • Transsphenoidal surgery - The tumor is removed through the nasal cavity using endoscopic techniques.
  • Transcranial surgery - The tumor is removed through the skull using open surgical techniques.

Outlook and Prognosis for Individuals With Acromegaly

If acromegaly is diagnosed and treated early, individuals may lead normal, healthy lives. When diagnosed late, individuals may suffer from health complications such as respiratory disorder, cardiovascular disease, and malignant (cancerous) tumors. Due to the nature of acromegaly, it may be necessary to follow up indefinitely with the physician to monitor the function of the pituitary gland.

Coping with the symptoms of acromegaly may prove challenging for some individuals. It is recommended that these individuals seek out support groups in order to talk through the challenges of acromegaly treatment and post-treatment.