Acromegaly

About acromegaly

Acromegaly is a chronic hormonal disorder that occurs when the body produces excess growth hormone (GH). The majority of acromegaly cases are caused by a noncancerous tumor in the pituitary gland at the base of the brain that secretes excess growth hormone, which in turn triggers the overproduction of another hormone, insulin like growth factor-1 (IGF-1). The onset of acromegaly symptoms is gradual and often mistaken for other medical conditions, and as a result, the average time to diagnosis is 6-10 years.

Prolonged GH and IGF-1 exposure may cause signs and symptoms including headaches, visual problems, enlargement of hands, feet, internal organs and/or facial features, oily skin and excessive sweating, sleep apnea, fatigue, joint pain, and soft tissue thickening of the palms of the hands and soles of the feet.

Elevated levels of GH and IGF-1 may also put patients at risk for serious health complications, including heart disease, diabetes, hypertension (high blood pressure), arthritis, and colon cancer.

Treating acromegaly

The main goal of treatment is to lower growth hormone (GH) and insulin like growth factor-1 (IGF-1) levels to within the normal range (GH <1 µg/L and age- and sex-normalized IGF-1). There are several ways to treat acromegaly, including:

  • Surgery: The goal of surgery is to remove the pituitary tumor and, consequently, control GH secretion. For many patients, surgery improves hormone levels, but does not always return them to normal, so additional treatment may be required.
  • Medical therapy: There are different medical treatments available to treat acromegaly, which can reduce GH secretion and IGF-1 production.
  • Radiation therapy: Radiation therapy is used following surgery in cases where parts of the tumor are still present and medications are not controlling the disease. Patients might not receive the full effects of this therapy for many years.

Doctors should work closely with their patients to select the most appropriate treatment approach. It is also critical for acromegaly patients to regularly monitor their hormone levels to identify recurrence of elevated GH and IGF-1 levels in a timely manner, as even after receiving treatment, approximately 48%-72% of patients will experience disease recurrence. Current recommendations are to measure GH and IGF-1 levels for 3-6 months post surgery and then at routine follow-up visits every 6 months.

Questions to ask your doctor

If you have recently been diagnosed with acromegaly, be sure to speak with your doctor about questions you may have about disease management:

  • What are my treatment options?
  • Am I a candidate for surgery?
  • Will I need additional treatment after surgery?
  • What are the advantages and disadvantages of each treatment option?
  • Do I need treatment right away?
  • If left untreated, what is my risk of developing serious complications such as diabetes and heart disease?
  • What is the likelihood that the treatment you recommend will:
    • Normalize my growth hormone (GH) and insulin-like growth factor 1 (IGF-1) levels?
    • Control the tumor mass without harming normal pituitary function?
    • Relieve the signs and symptoms?
    • Improve my life expectancy?
  • How quickly will I experience relief of my symptoms with each treatment?
  • How is each treatment administered?
  • How will each treatment affect my daily life?
  • How will you be monitoring my condition (ie, pituitary tumor size, GH levels, IGF-1 levels, symptoms)?
  • Where can I go for more information?

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