Overview
What is Acromegaly
Acromegaly is a rare, chronic endocrine disorder caused by the excessive production of growth hormone (GH). Growth hormone is normally produced by the pituitary gland, a small gland located at the base of the brain. The most common cause of acromegaly is a non- cancerous tumor in or near the pituitary, called an adenoma, which may secrete growth hormone or other hormones. Excess growth hormone in Acromegaly can lead to serious complications, such as diabetes, increased stroke risk, osteoporosis, obstructive sleep apnea, migraines, and chronic pain due to abnormal tissue swelling and enlargement. Acromegaly in adults should not be confused with gigantism, or excessive height due to a childhood-onset pituitary disorder. In adults with new-onset acromegaly, height does not change, but growth in the hands and feet are typical. Increases in shoe or ring size are early symptoms patients experience. Enlarged heart muscles can contribute to cardiac complications, such as high blood pressure, irregular heartbeats, or heart failure. Acromegaly can also increase the chance of developing colon polyps, which can be become cancerous if not removed.1
Treatment for acromegaly is aimed at reducing or removing the pituitary tumor and may include surgery, radiation treatments, or medications to control excessive hormone release. Earlier treatment can help to reduce and reverse some complications associated with acromegaly.
How common is Acromegaly
Approximately 3,000 new cases of acromegaly are diagnosed each year in the United States, typically in adults 30-50 years of age.2 Men and women are affected equally. Nearly 25,000 Americans are living with acromegaly. Successful hormonal control often requires a combination of surgical, radiation, and/or medication therapy.3
Questions regarding your Acromegaly?
You can reach the Accredo Acromegaly care team, anytime, day or night, seven days a week by phone or online.
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- 1Acromegaly. National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health. Last reviewed January 2020, Accessed June 23, 2023. National Institute of Diabetes and Digestive and Kidney Diseases
- 2Broder MS, et al. Incidence and Prevalence of Acromegaly in the United States: a Claims-based Analysis. Endocr Pract. 2016 Nov;22(11):1327-1335. doi: 10.4158/EP161397.OR.
- 3Zahr R, Fleseriu M. Updates in Diagnosis and Treatment of Acromegaly. Eur Endocrinol. 2018 Sep;14(2):57-61. doi: 10.17925/EE.2018.14.2.57.
Symptoms
What are the symptoms of Acromegaly
Growth hormone plays an important role in tissue growth and repair. High levels of growth hormone in patients with acromegaly can cause changes in many different parts of the body, causing bones, organs, and other tissues.
Symptoms include:
- Increase in ring and shoe sizes due to enlarged hands and feet
- Changes in facial bones and facial tissue growth, such as enlargement of lips, nose or teeth spacing (may only notice changes over time when comparing photographs)
- Voice deepening
- Skin changes including: Oily skin, excessive sweating, thickening of the skin, skin tags, body odor, increased body hair
- Hormonal changes including: breast tissue enlargement or milk production (even if not nursing), sexual dysfunction, menstrual cycle changes
- Headache or migraines
- Vision changes
- Fatigue
How is it diagnosed
Due to the overlap of acromegaly symptoms and complications with other common disorders, such as diabetes and heart disease, diagnosis could be delayed as long as 10 years from symptom onset.1
A key indicator for acromegaly is insulin-like growth factor-1 (IGF-1) and measuring blood levels of growth hormone during an oral glucose tolerance test (OGT). During an OGT, patients ingest a sugary liquid and their blood growth hormone (GH) levels are measured over the course of 2 hours. High blood sugar will normally decrease GH production; but in acromegaly, the growth hormone remains above normal. Healthcare providers may also conduct imaging tests on the brain, such as an MRI or CT scan, to look for abnormalities in the pituitary gland. Because adenomas may secrete more than one type of hormone, other pituitary hormones are also evaluated during work up.2
- 1Acromegaly. National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health. Last reviewed January 2020, Accessed June 23, 2023. National Institute of Diabetes and Digestive and Kidney Diseases
- 2Zahr R, Fleseriu M. Updates in Diagnosis and Treatment of Acromegaly. Eur Endocrinol. 2018 Sep;14(2):57-61. doi: 10.17925/EE.2018.14.2.57.
Medications
Acromegaly
The following specialty medications are available at Accredo, a specialty pharmacy for Acromegaly.
Financing Your Care
Financial assistance is available to support your drug costs including manufacturer and community programs. Accredo specialists are available to assist in finding the right program(s) for you.
- Patient Access Network (PAN) Foundation | 866-316-7263
- Patient Advocate Foundation | 866-512-3861
- The Assistance Fund | 855-845-3663
- Healthwell Foundation | 800-675-8416
Financial Guidance
Life-saving specialty medication can be expensive. Learn how the Accredo teams help individuals find ways to afford the medication they need to survive in this video.
Find Support
There are many organizations that support research and advocacy for Acromegaly. See below for a few of those organizations.
Support Organizations
Government Organizations
Meet the Team
Accredo’s Acromegaly team is dedicated to serving you and we understand the complexity of your condition. Our specialty-trained clinicians are available 24 hours a day, seven days a week, to answer any questions.
Why We Do It
Accredo supports patients with chronic and complex conditions and helps them live their best life. Watch our video to learn why we do what we do for our patients.
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