Living with Acromegaly

Living with acromegaly poses unique challenges. The physical changes caused by excess growth hormone production can have a significant effect on daily life.

Enlarged hands and feet can make simple tasks such as finding properly fitting shoes or gloves challenging.Facial changes, such as an enlarged nose and protruding jaw, can affect self-esteem and body image.

Joint pain and limited mobility resulting from overgrown bones and cartilage can make movement and physical activities difficult. The associated health complications, such as cardiovascular problems and diabetes, further contribute to the challenges faced by people with acromegaly.

In this article, we answer common questions regarding living with acromegaly.

Acromegaly is generally considered a chronic and progressive condition. However, it can be treated effectively using a variety of options, providing people with hope for managing their condition.

The primary and most preferred treatment method is transsphenoidal surgery, a minimally invasive procedure during which specialized instruments are inserted through the nose and the sphenoid sinus to access and remove a tumor from the pituitary gland. One approach includes the uses a microscope, whereas another more recent approach involves an endoscope.

In the endoscopic approach, a slender instrument (endoscope) equipped with a small camera and light at its tip is inserted through a smaller nasal opening; here, a small opening is created into the front part of the sphenoid, providing access to the sinus (a hollow chamber). The endoscopic method is considered less invasive when compared with traditional surgery and provides a more minimally invasive approach for performing transsphenoidal surgery.

This surgical technique, aptly named “transsphenoidal” (literally, through the sphenoid), offers a direct pathway to the pituitary gland, which is located behind the nasal cavity. With success rates ranging from 70% to 80%, transsphenoidal surgery is considered the first-line and most effective treatment for acromegaly.

However, complete tumor removal is not always possible, and in such cases, or if the tumor reappears, alternative treatments such as radiation therapy or medication might be recommended.

In the context of acromegaly, radiation therapy often involves a technique called stereotactic radiosurgery. This approach uses highly focused radiation beams to deliver a precise dose of radiation to the tumor; this precision minimizes radiation damage to surrounding healthy tissues.

The goal is to inhibit the growth of the tumor and normalize hormone levels. Radiation therapy is typically administered in multiple sessions over a period of several weeks, allowing the radiation dose to be delivered gradually while minimizing adverse effects.

Changes related to radiation therapy, such as symptom relief, normalization of growth hormone levels, and reductions in size, are often not immediate. Noticeable differences may be observed in months to years.

Medications also play a role in managing acromegaly. Somatostatin analogs, including octreotide and lanreotide, are commonly administered through injections given either subcutaneously (beneath the skin) or intramuscularly (into a muscle). These medications help lower a patient’s growth hormone level.

Dopamine agonists, such as cabergoline and bromocriptine, can also be prescribed to regulate hormone production. In addition, growth hormone antagonists such as pegvisomant can be used to block the effects of growth hormone.

The prognosis for acromegaly depends largely on the promptness of diagnosis and subsequent treatment. If left untreated, the condition can lead to various complications, including cardiovascular issues, diabetes, and joint problems, which could lead to premature death.

However, with early detection and appropriate management, the prognosis can be improved significantly. After treatment, the associated complications often improve or resolve, and you can expect to live as long as previously expected.

Regular monitoring and follow-up care are essential for ensuring optimal control of the condition. Advances in medical interventions and a multidisciplinary approach involving endocrinologists, neurosurgeons, and other specialists also contribute to the possibility of a better outcome.

Overall, timely diagnosis and comprehensive management strategies play crucial roles in enhancing the long-term prognosis and quality of life for those affected by this disorder.

Acromegaly increases your risk of developing various health complications, and these complications can significantly affect your overall health and quality of life. Untreated acromegaly can give rise to severe health problems and premature death.

The main causes of death in people with acromegaly are typically associated with cardiovascular and respiratory complications. Other serious problems include diabetes and joint problems.

• Cardiovascular disease—Acromegaly is associated with an increased risk of cardiovascular problems, including hypertension, cardiomyopathy, and an increased risk of heart attack and stroke.
• Respiratory issues—The enlargement of tissues in the throat and nasal passages can contribute to sleep apnea and other respiratory problems.
• Diabetes—Overproduction of growth hormone can interfere with the body’s ability to regulate blood sugar levels, which increases the risk of developing diabetes.
• Joint problems—Enlarged bones and cartilage can lead to joint pain, stiffness, and an increased risk of developing arthritis.

Following treatment, not all aspects of acromegaly are reversible. The physical changes caused by bony overgrowth are often permanent even after treatment. This emphasizes the importance of early treatment to limit the long-term impact of this condition.

• Living with acromegaly might require ongoing management, but with appropriate treatment and support, people with this condition can lead a fulfilling life and minimize the effects of the condition on their overall well being.
• Without proper treatment, acromegaly can give rise to substantial health complications and, in some cases, even result in premature death.
• It’s important to be proactive in managing any associated health conditions, such as cardiovascular disease and diabetes.
• The primary and most preferred treatment method is transsphenoidal surgery.

• Pituitary Network Association: Acromegaly
• The Pituitary Foundation [UK]: Acromegaly
• National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK): Acromegaly
• National Health Service (NHS) [UK]: Acromegaly