About Acromegaly

Acromegaly is a rare medical condition that is generally caused by a benign (non-cancerous) tumour that is secreting growth hormone (GH). The tumour is typically located inside or attached to the pituitary gland, but there have been some very rare cases where the tumour is located on an organ.

The pituitary gland is considered the master gland—it controls and regulates all our other glands and organs. It is a pea-sized gland located in the frontal part of our brain, under the hypothalamus, hanging down at the bottom of a stem. It’s about an inch back from the centre of our eyes.

Acromegaly is a condition that happens after puberty ends, but this condition can also happen in children and teens—it is then called gigantism.

Location of the pituitary gland
The organs and glands regulated by the pituitary gland

Acromegaly can cause the following symptoms, whether due to the extra growth hormone or because of the tumour itself:

  • Headaches/migraines
  • Profuse sweating
  • Snoring/sleep apnea
  • Joint pain
  • Carpal tunnel syndrome
  • Fatigue
  • Breast leakage (when not pregnant; can also happen to males)
  • Infertility, amenorrhea, impotence, decreased sex drive
  • Growth in hands and feet (increased ring, shoe, and hat size)
  • Swelling and growth of facial features, especially nose, chin, and brow
  • Thicker hair and faster growing hair and nails
  • Weight gain
  • Weakness
  • Skin tags
  • Increased spacing of the teeth
  • Difficulty concentrating
  • Difficulty recalling words
  • Difficulty speaking due to tongue swelling
  • Difficulty controlling emotions and increase in angry reactions
  • Loss of sight or double vision, blurriness
  • Enlargement of the internal organs, potentially leading to heart issues
  • Stroke
  • Colon polyps
  • High blood pressure
  • Diabetes

The above symptoms will often lead a medical professional to suggest magnetic resonance imaging (MRI) and/or an oral glucose tolerance test (OGTT). The first determines whether there is a pituitary tumour present and the second measures how quickly glucose is cleared from the blood. To help with the diagnosis, a doctor will request bloodwork for various other hormones, including the insulin-like growth factor 1 (IGF-1). The results of these tests, along with the presence of some of the above symptoms, will lead to a diagnosis of acromegaly.

If a tumour is visible on the MRI, the first line of treatment is usually surgery to remove the tumour. This surgery is generally transsphenoidal: it is done through the nasal cavities or, less often, through the gums. In very rare cases, they may perform a craniotomy.

If there is no visible tumour or the surgery does not reduce IGF-1 levels, there are several drugs that can help suppress IGF-1 and improve symptoms. These include:

  • Octreotide (Sandostatin)
  • Pasireotide (Signifor)
  • Lanreotide (Somatuline)
  • Pegvisomant (Somavert)
  • Cabergoline (Dostinex)

If surgery and drug therapy are not effective, radiation may be considered. This may be either one dose called gamma knife or a series of doses (every week day for 4-6 weeks) called conventional radiation. This decision will be made between you and your medical team and will depend on the size and location of the tumour.