Acromegaly

Acromegaly develops when a benign pituitary tumor grows and secretes increased levels of growth hormone. It’s a very rare disorder, and while it can develop at any age, it usually affects middle-aged adults.

Clinical manifestations

Clinical manifestations of acromegaly can vary but, in general, the disease is characterized by:

Somatic overgrowth in the hands, feet, and face
Physical changes
Joint pain
Metabolic disorders
Cardiovascular disease
Respiratory problems
Premature mortality when untreated

These effects are due to the over secretion of growth hormone (GH) and insulin-like growth factor-1 (IGF-1), the latter of which is produced by the liver in response to GH. Local effects of the tumor itself can cause hypopituitarism (when a normal pituitary gland does not secrete the proper level of hormones) and it can cause vision problems.

IGF-1

Endocrine Society clinical practice guidelines suggest screening for acromegaly by measurement of IGF-1 in patients with typical clinical manifestations. In assessing IGF-1 test results, normal ranges for IGF-1 levels can differ from person to person. First, they depend on age and sex. Second, there’s no one-size-fits-all “normal” for IGF-1 levels because different labs use different tests, and each test has its own way of measuring and defining a normal IGF-1 level range.

IGF-1 tests are a valuable tool, but there are additional measures health care providers employ to assess whether acromegaly is under control. For example, discussing the severity and frequency of any breakthrough acromegaly symptoms is an important part of follow up visits for patients on medications. In addition, periodic MRI scans may be obtained to ensure that the pituitary tumor which causes the disease is stable.

Learn more at AcromegalyReality.com

“Symptoms affect my quality of life, affect my relationships, affect my abilities to fulfill my responsibilities professionally, personally…I need to be functional.”

— Acromegaly Patient Testimonial

The burden on patient lives

Acromegaly can be debilitating. The effects on patients’ lives are myriad:

Pain: Monthly intramuscular or deep subcutaneous injections of the current standard of care require large-gauge needles, often leading to pain and injection site reactions.
Disruption: Treatment often involves taking time off work, getting to the hospital/clinic and back, sitting in the waiting room, etc. It’s nonproductive time that must be endured every single month. Recovery time from injections is also disruptive.
Isolation: Physical symptoms such as somatic changes, fatigue, and depression can cause patients to shrink their lives to fit their disease. The emotional components of isolation also play a debilitating role in their lives.
Frustration: The rarity of their disease, the time spent consulting the wrong specialists, the lack of feasible treatments that fit their desired lifestyle, feeling like they’re not being heard, and the fact it took so long to get a proper diagnosis can cause patients to become frustrated, angry, and depressed. This can affect their families and loved ones, their friendships, their careers, and more.