The information on the Rare Awareness Rare Education (RARE) Portal is intended for educational purposes only and does not replace professional advice.
Rare diseases typically display a high level of symptom complexity and variability. Individuals diagnosed with the same rare disease may be impacted differently and each person’s experience is unique. Please seek support from qualified healthcare professionals to learn more about the most suitable care and support options for you.
For more information on this disease, please refer to Australian Pituitary Foundation.1
If you are aware of any additional information that may benefit stakeholders with an interest in this page, or if you notice any broken links or inaccurate information, please let us know via the Contribute page.
This page has been co-developed with RVA Partner, Australian Pituitary Foundation.1
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Emergency Management | Clinical Care Guidelines | Synonyms | Summary | Symptoms | Cause/Inheritance | Diagnosis | Treatment | Clinical Care | Research | Rare Disease Organisation(s) | Social Services | Mental Health | Other | References
There may be special considerations for the emergency management of individuals living with acromegaly presenting to emergency departments.
Clinical Care Guidelines
Multidisciplinary management of acromegaly: A consensus was published in 2020 by the Acromegaly Consensus Group consisting of acromegaly experts from various countries, including Australia.
ICD11: 5A60.0 Acromegaly or pituitary gigantism
Acromegaly is a type of pituitary condition and is caused by the pituitary gland producing too much growth hormone (GH).1,2 In most cases, it is due to a non-cancerous (benign) tumour in the pituitary gland. GH is a hormone involved in many biological processes in the body, including physical growth, and stimulating the liver to produce insulin-like growth factor-1 (IGF-1).3 The overproduction of GH leads to abnormal growth of bones, resulting in enlarged hands, feet, and facial features, as well as thickening of soft tissues like the heart, lips, and lungs. 1-3 It can also lead to curvature of the spine and enlargement of internal organs.3 There is also a range of other symptoms, including joint and muscle pain, high blood pressure (hypertension), headaches, issues with vision, as well as metabolic complications, such as such as high blood sugar and type 2 diabetes associated with increased IGF-1 levels.3 If the overproduction of GH occurs in childhood before puberty, the condition is known as gigantism instead of acromegaly, and results in tall stature.1-3 Symptoms of acromegaly tend to develop slowly over time, which makes it hard to recognise and is often only diagnosed years after the initial onset.1,3-4
Acromegaly varies between individuals, and each person’s experience is unique.
Personal story: Shari’s story (Australian Pituitary Foundation).
Endocrine Society of Australia (ESC) – national non-profit organisation of scientists and clinicians who conduct research and practice in the field of Endocrinology
Symptoms of acromegaly often develop slowly and may not be noticeable for years.1,3-4 There is a wide range of symptoms, which may vary between individuals.3
Common physical symptoms of acromegaly include large hands, feet and facial features such as nose, jaw, lips, tongue and wide spacing between front teeth.1,3 Individuals may also have abnormal curvature of the spine, outgrowth of the skin (skin tags), excessive sweating and oily skin as well as enlarged thyroid (goiter).3 There may also be enlargement of internal organs such as the liver (hepatomegaly), spleen (splenomegaly), heart, intestines, kidney and adrenal glands.3
General signs may include joint and muscle pain, tiredness, snoring, headache and issues with vision.1
There may also be other complications, including but not limited to1,3:
- inflammation of joints (osteoarthritis) and carpal tunnel syndrome
- high blood pressure (hypertension)
- high blood sugar (glucose) levels and Type 2 diabetes
- heart disease
- sleep apnea
- erectile dysfunction in men and infrequent menstrual periods (oligomenorrhea) in women
- abnormal tissue growth (polyp) in colon and increased risk of colon cancer
Human Phenotype Ontology (HPO): Acromegaly (ORPHA:963) has more information on the clinical symptoms that has been associated with acromegaly.
Please speak to your medical term to learn more about the symptoms of acromegaly.
Acromegaly is caused by the pituitary gland producing too much growth hormone (GH). It is most often related to a pituitary gland tumour that is usually non-cancerous (benign). In rare cases, overproduction of GH may be caused by tumours in the pancreas, lungs, adrenal glands or in the hypothalamus of the brain.2,3
Acromegaly may also occur as part of genetic syndromes such as types of multiple endocrine neoplasia syndromes, familial isolated pituitary adenoma (FIPA), Carney complex or McCune-Albright Syndrome.3,4
Diagnosis of acromegaly may be made based on detailed patient history, clinical examination and blood tests to detect increased levels of insulin-like growth factor-1 (IGF-1) and growth hormone (GH). 1,3-4 Measurement of GH should be done together with a glucose tolerance test – it may be known as a growth hormone suppression test.1 Blood GH levels are measured before and after a glucose drink that should lower GH levels if the pituitary gland is functioning properly.1,3
Imaging studies such as magnetic resonance imaging (MRI) or computerised tomography (CT) may be used to detect for, and visualise, any tumours.1,3-4
Further tests may be performed to determine the extent of acromegaly symptoms/disease presentation. This may involve a heart ultrasound (echocardiogram), sleep studies to identify sleep disorders such as sleep apnea, bowel exam (colonoscopy) and eye field tests to detect for vision issues.1,4
Treatment is targeted at reducing growth hormone (GH) levels and at managing symptoms but is unable to reverse bone growth.1 Treatment may first involve surgery to remove or reduce any tumours and/or medication to block or reduce GH levels. 1,3-4 Radiotherapy tends to only be used as the third line of treatment as it may take years to achieve a result.1,3
Regular monitoring of endocrine function is required.5
Please speak to your medical team to learn more about the possible treatment options for acromegaly. Treatment will depend on an individual’s specific condition and symptoms.
Healthcare professionals involved in the treatment of acromegaly may include general practitioners (GP), endocrinologists, endocrine nurses, neurosurgeons, neuroradiologists, neuropathologists, and radiation oncologists.1,5 The need for different healthcare professionals may change over a person’s lifetime and extend beyond those listed here.
Hormones Australia: Find An Endocrinologist is a directory of endocrinologists across Australia who are members of the Endocrine Society of Australia. A referral from a GP is required to see an endocrinologist.
Please visit Australian Clinical Trials to learn about clinical trials for a specific pituitary condition in Australia; there may not be any clinical trials currently available.
Information regarding clinical trials for a specific pituitary condition in other countries can be found at ClinicalTrials.gov; there may not be any clinical trials currently available.
It is best to discuss your interest in any clinical trials with your medical team to determine suitability and eligibility.
Rare Disease Organisation(s)
Australian Pituitary Foundation (APF) is a national not-for-profit organisation, established to provide valuable support and information for adults and children, along with their families, living with pituitary conditions.
Please note that RVA does not necessarily monitor or endorse each group/organisation’s operational governance.
For information on available government and social services that provide support for individuals with a rare disease, please visit the National and State Services pages.
Australian Pituitary Foundation: Support and Wellbeing has information about the support for individuals with pituitary conditions, and their families.
For information on available general mental health services, please visit the ‘Mental Health’ sections listed on the National and State Services pages.
Further information on acromegaly or general information on pituitary conditions can be found at:
- Australian Pituitary Foundation: A Guide to Acromegaly
- healthdirect: Acromegaly
- Genetic and Rare Diseases (GARD) Information Center – Acromegaly
- National Organization for Rare Disorders (NORD): Acromegaly
- RARE Portal: Pituitary Conditions
- Australian Pituitary Foundation. Accessed 19 October 2023. https://pituitary.asn.au/
- Genetic and Rare Diseases (GARD) Information Center. Acromegaly. Accessed 19 October 2023. https://rarediseases.info.nih.gov/diseases/5725/acromegaly
- National Organization for Rare Disorders (NORD). Acromegaly. Accessed 19 October 2023. https://rarediseases.org/rare-diseases/acromegaly/
- Acromegaly. Accessed 19 October 2023. https://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=963
- Giustina A, Barkhoudarian G, Beckers A, et al. Multidisciplinary management of acromegaly: A consensus. Rev. Endocr. Metab. Disord. 2020; 21(4):667-678. https://doi.org/10.1007/s11154-020-09588-z
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