Medically Reviewed by Dr. K on 13 May 2022.
Table of contents
What Is Acromegaly?
Acromegaly is a condition in which the body produces too much growth hormone (GH). It results in irregular development, which normally begins in the hands and feet. Children's growth and development are driven by GH. Energy levels, muscle function and bone health are all influenced by GH in adults.
The majority of people who develop acromegaly are in their forties or fifties. Excess growth hormone in children may cause a disease known as gigantism.
Treatments for acromegaly exist, and each condition is unique. In most cases, you don’t present with symptoms or signs for years.
A pituitary adenoma, a benign non-cancerous tumour in the pituitary gland is the most common cause. The pituitary gland is located just below the brain in the skull. Your body releases excessive growth hormone as a result of the tumour.
Acromegaly may be caused by tumours in the pancreas, liver, or areas of the brain that contain elevated levels of another hormone called IGF-1, which triggers the symptoms and signs seen.
Change occurs gradually, often over the course of several years. The size of your hands and feet become enlarged. Your ring or shoe size, especially the width of your shoe, may change and increase in size.
Lips, chin, nose, and tongue shapes of your face enlarge over time, becoming coarser and wider. It's likely that your teeth will start to space out as well. Your lower jaw and brow can begin to protrude from your face.
Other symptoms may include:
- Aching joints
- Rough body hairs
- Deep and hoarse voice
- Compressed nerves
- Oily skin
- Skin tags
- Increased body odour and sweating
- Sleep apnea – a breathing disorder that happens during sleep
- Tingling or pain in fingers (carpal tunnel syndrome)
- Visual disturbances
- Lower sex drive
- Changes in menstrual cycle
- Breast discharge in women
- Erectile dysfunction in men
Early diagnosis improves outcomes. Important questions to ask your doctor include:
- Symptoms and signs you have notived?
- How long has it been a problem?
- How are you feeling?
To accurately diagnose Acromegaly, your doctor will need to investigate with the following tests:
- Blood test: IGF-1 hormone levels
- Glucose tolerance test: consume a sugary drink and then your blood sugar is measured with your GH levels in your blood over 2 hours. If your levels don’t drop, this is a sign you could have acromegaly.
Other tests include:
- Blood test for prolactin levels, which could be slightly elevated
- Echocardiogram, an ultrasound of the heart
- A colonoscopy to check your colon
- A sleep study to check for sleep apnea
- X-rays to assess if your bones have thickened
- MRI or CT scans to help find underlying tumors
- Compare photos of yourself over years to look for any physical differences
Questions for Your Doctor
If you've been diagnosed with acromegaly, you're likely to have a lot of concerns. You may want to begin by asking your doctor the following questions:
- What is acromegaly?
- What is causing my acromegaly?
- What treatment is recommended?
- How will treatment affect the symptoms?
- What outcomes can I expect?
- What are the side effects of the treatments?
- How many other people with acromegaly have you treated?
- Will this disease reoccur?
Your doctor will consult with you to develop the best recovery plan possible, taking into account your age, wellbeing, and the extent of your condition.
Acromegaly can be treated in three ways:
For people with large tumours impacting critical organs, surgery is often the first treatment choice, particularly if the tumours are pushing on nerves that obstruct vision. The tumour will be removed from the base of the brain by the surgeon. They'll make a small cut in your nose or the inside of your upper lip to get to it. In certain cases, your doctor may recommend medication to shrink the tumour before surgery.
Your doctor will measure your hormones and do scans of the region where the tumour was removed following the surgery. After just a few days, your symptoms may begin to change. Following surgery, your doctor may prescribe you to take one of the following prescriptions to help manage or cure the disease and restore natural hormone levels:
- Somatostatin analogs: lanreotide, octreotide or pasireotide
- Growth hormone receptor antagonists: pegvisomant
- Dopamine agonists: cabergoline, bromocriptine
These medications either lower the amount of growth hormone in your blood or inhibit its effects.
If remnants of a tumour remain following surgery or if you need more help reducing growth hormone levels after taking medication, radiation may help. Radiation treatment will help the body from releasing too much growth hormone to ensure the tumour stops developing. Radiation treatment comes in a number of ways, including:
- Conventional radiation therapy. This method of radiation therapy is provided every weekday for a duration of 4-6 weeks. It could take ten years or longer for you to feel the effects of this type of therapy on your body.
- Proton beam therapy. This procedure would deliver a high dose of radiation directly to the tumour while avoiding the underlying healthy tissue. You'll get several treatments, so they'll usually take less time than conventional radiation therapy.
- Stereotactic radiosurgery. One very high dose of radiation will be delivered to your tumour cells while healthy tissue is spared. In around 5 years, this form of therapy could bring your GH levels back to normal.
Your acromegaly understanding can be determined by how the disease has changed you. Work together with the specialist to ensure that you are aware of your choices and what to consider as the care progresses. Ask the doctor questions, and let them know your concerns.
You will not have any complications if you initiate acromegaly treatment early, or if you do, you may keep them from being worse.
Complications may include the following:
- Cardiovascular disease – heart disease
- Carpal tunnel syndrome
- Goiter – enlarging thyroid gland
- High blood pressure
- Precancerous growths on your colon
- Sleep apnea – a sleep disorder
- Spinal cord compression
- Vision loss
It's important to seek treatment for acromegaly. It can be fatal if left untreated.
Getting Support for Acromegaly
When you're dealing with a disease like an acromegaly, engaging with other people who have it can be beneficial. Check with your doctor and see if there are any local support groups, or find an online support network. Your doctor will recommend you to a counselor if you feel it would be useful to meet with one.
Make it clear to your family and friends what they should do to help you. They'll try to help, but they may not know how, so be clear about what you'd want them to do.
Visit the Pituitary Network Association's acromegaly website to read more about the disease. You will figure out how to access a support group near you there.
Referenced on 2.3.2021:
- Johns Hopkins Medicine: “Acromegaly."
- Medscape: “Gigantism and Acromegaly."
- National Endocrine and Metabolic Diseases Information Service: “Acromegaly."
- UpToDate: “Patient information: Acromegaly (Beyond the Basics)."
- The Pituitary Society: Pituitary Gland Overview," “Acromegaly – Diagnosis.”
- UCLA Health: “Acromegaly.”
- Mayo Clinic: “Acromegaly.”
- National Organization for Rare Disorders: “Acromegaly.”