What patient education should I provide regarding the long-term management of hypopituitarism?

Patient education for long-term management of hypopituitarism should include:

• Explanation of the nature of hypopituitarism as an underactivity of the pituitary gland causing deficiencies in hormones such as ACTH, growth hormone, sex hormones, TSH, and vasopressin, and the symptoms related to these deficiencies (e.g., fatigue, weight loss, hypotension, low mood, infertility, cold intolerance, polyuria) to help patients understand their condition.
• Information on the necessity of lifelong hormone replacement therapy tailored to the specific hormone deficiencies, emphasizing the critical importance of glucocorticoid replacement to prevent adrenal crisis and the need for dose adjustment during physiological or psychological stress.
• Education on recognizing symptoms of under- or over-replacement of hormones, including signs of adrenal insufficiency, and when to seek urgent medical advice.
• Instructions on how to manage sick-day dosing, including when and how to increase glucocorticoid doses during illness, injury, or surgery, and the importance of maintaining an adequate supply of medications at all times, including when travelling.
• Advice on carrying medical alert identification such as NHS Steroid Emergency Cards or MedicAlert jewellery to inform healthcare professionals in emergencies.
• Information on the availability of support groups and charities, and guidance on discussing their condition with employers, educational settings, family, and friends to facilitate support and understanding.
• Reassurance that with appropriate management, individuals with hypopituitarism can lead a full and active life.

These points align with recommendations for adrenal insufficiency management, which is a common and critical component of hypopituitarism, and general principles of patient involvement and education in chronic endocrine conditions ¹,³,⁴.