Pituitary conditions are a group of disorders that are caused by the pituitary gland not functioning properly and producing too much or too little of a particular hormone.¹ The pituitary gland is found in the brain and is controlled by the hypothalamus, which sends signals to tell the pituitary gland when to release its hormones. The pituitary gland itself controls other endocrine (hormone-producing) glands, such as the thyroid, adrenal gland, ovaries and testis.^1,2

Hormones travel through the blood and act as signals to various parts of the body.² Different hormones have different functions. Too much or too little of a hormone caused by pituitary gland dysfunction can affect a particular biological process in the body, resulting in a disorder.

Different types of pituitary conditions include:³

• Acromegaly
• Arginine vasopressin deficiency (AVP-D)
• Cushing’s disease
• Craniopharyngioma
• Growth hormone deficiency
• Hypopituitarism
• Non-functioning pituitary tumour
• Pituitary tumour
• Prolactinoma
• Rathke’s cleft cyst

This list may not cover all existing pituitary conditions. More of these individual pages will be developed in time. Information about the more common types of pituitary conditions can be found at:

• Australian Pituitary Foundation: Pituitary Conditions
• Hormones Australia: Pituitary Gland

There are no known synonyms.

Universal rare disease classifications provide a common language for recording, reporting and monitoring diseases. Please visit the Rare Disease Classifications page for more information about these internationally recognised classifications.

Please refer to the individual pituitary conditions for their specific classifications.

Symptoms may depend on the type of pituitary condition and the type of hormone(s) that are affected. There may be a wide range of symptoms.

There may be more information about symptoms on the individual pituitary condition page on the RARE Portal. More of these pages will be added to the RARE Portal in time.

Please speak to your medical team to learn more about the symptoms of a particular pituitary condition.

Rare diseases are often serious and progressive, exhibiting a high degree of symptom complexity, leading to significant disability. Majority of the estimated two million Australians living with a rare disease meet the Australian Government’s definition for disability (in accordance to the Australian Public Service Commission and Australian Bureau of Statistics), and many experience severe and permanent disability impacts. If you or someone you care for is experiencing disability-related impacts from a rare condition, please speak with a health or disability professional for advice. Information about relevant disability support can be found at the RARE Portal’s Disability Support Information page.

Pituitary conditions occur when the pituitary gland produces too much or too little of a particular hormone.¹ The most common cause is an abnormal growth (tumour) in the pituitary, which is often non-cancerous (benign) but affects the production of hormones. Pituitary conditions can also be caused by head injuries, infections, certain types of medication, and cancer treatments such as radiation therapy.^1,4

Diagnosis of pituitary conditions may be made based on blood tests to look at pituitary hormone levels and brain scans to look for a tumour or other abnormalities in the pituitary gland.¹

Please speak to your medical team to learn more about the available diagnostic pathways for a specific type of pituitary condition.

Treatment will depend on the type and the cause of the pituitary condition. It may involve hormone replacement therapy and/or surgery to remove a pituitary tumour if one is present.

Please speak to your medical team to learn more about the possible treatment or management options for your condition. Treatment will depend on an individual’s specific condition and symptoms. It is also important to stay connected to your medical team so that you can be made aware of any upcoming clinical trial opportunities.

Clinical care for rare diseases often involves a multidisciplinary team of medical, care and support professionals. Please note that the information provided here is as a guide and that RVA does not necessarily monitor or endorse specific clinics or health experts.

Healthcare professionals involved in the treatment of pituitary conditions may include general practitioners (GP), endocrinologists, neurosurgeons, ear, nose, and throat (ENT) surgeons, neuropathologists, neuroradiologists, and radiation and medical oncologists.¹ 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.

We are not aware of any clinical care guidelines for pituitary conditions as a whole in Australia. If you know of any relevant care guidelines, please let us know via the Contribute page.

There may be specific clinical care guidelines for individual types of pituitary conditions.

Individuals living with rare diseases may have complex medical issues and disabilities, which are not always visible. It is often useful to refer to their medical history as well as personal information such as a medical card, doctor’s letter, or if available, a rare disease passport, for relevant information.

It may be important to consider the following when managing individuals living with RD at emergency departments/services:

• a medical emergency or serious accident may affect cortisol levels, which can be life-threatening for individuals with some types of pituitary conditions.¹ In those cases, an emergency hydrocortisone injection may be necessary.

EndoGen National Network of Endocrine Genetic Centres is a clinical and academic initiative bringing together endocrinologists, clinical geneticists, genetic pathologists and genetic scientists involved in the assessment and/or management of patients with genetic endocrinopathies.

There are specific considerations around participating in rare disease research, including clinical trials. It is important to be mindful of issues such as data privacy, research ethics, consent and differences in research regulations between Australia and other countries.

If you are interested in finding clinical trials for your condition, please visit the following websites; however, there may not be any clinical trials available:

• Australian Clinical Trials
• ClinicalTrials.gov

It is best to discuss your interest in any clinical trials with your medical team to determine suitability and eligibility.

Please note that RVA does not necessarily monitor or endorse each group/organisation’s operational governance and activities.

Australian Organisation:

Australian Pituitary Foundation
Website: https://pituitary.asn.au/

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 monitor or endorse each group/organisation’s operational governance and activities. When engaging with a group, please consider the information on the RARE Portal’s Finding Helpful Peer and Community Supports page.

Pituitary conditions vary between individuals, and each person’s experience is unique.

If you would like to share your personal story with RVA, please visit the Rare Voices Australia: Share Your Story page. RVA will consider your story for publishing on our website and inclusion on the RARE Portal.

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.

People living with a rare disease, including families and carers, often face unique challenges such as diagnostic delays, misdiagnoses, limited treatment options, and limited access to rare disease specialists and support. These challenges may impact people’s emotional wellbeing and quality of life. Many people find it helpful to seek mental health and wellbeing support to cope with ongoing stress and uncertainty. Connecting with people who have shared experiences through a support group may also be helpful. Information about relevant mental health and wellbeing support can be found at:

• Mental Health and Wellbeing Support for Australians Living with a Rare Disease
• The National and State Services pages underneath the ‘Mental Health’ sections listed

Australian Pituitary Foundation: Support and Wellbeing has information about the support for individuals with pituitary conditions, and their families.

Further information on pituitary conditions can be found at:

• healthdirect: Pituitary gland and hormones

• Australian Pituitary Foundation: Information for GPs
• Endocrine Society of Australia (ESA) – national non-profit organisation of scientists and clinicians who conduct research and practice in the field of Endocrinology
• Endocrine Nurses’ Society of Australasia Inc. (ENSA)
• Australia and New Zealand Society for Paediatric Endocrinology and Diabetes (ANZSPED)

This page has been co-developed by Rare Voices Australia (RVA)’s RARE Portal team in consultation with Australian Pituitary Foundation.

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.