What is endocrinology and why is it important for post immunotherapy patients?

With a history of ipilimumab/nivolumab, severe immune-related colitis, and other questions about hydrocortisone, cortisol, levothyroxine and adrenal function, an endocrinologist plays a key role in ensuring that any hormone deficiencies are managed safely alongside your ongoing cancer treatment.

Endocrinology is the branch of medicine that deals with the body’s hormone-producing glands, including the:

  • Pituitary gland (the “master gland” in the brain)
  • Thyroid gland
  • Adrenal glands
  • Pancreas (which produces insulin)
  • Testes or ovaries

These glands regulate energy, blood pressure, metabolism, stress response, temperature, sexual function, and many other essential functions.

Why is it important after immunotherapy?

Immunotherapy can cause immune-related endocrine disorders. The most common are:

  1. Adrenal insufficiency
    • The adrenal glands may stop producing enough cortisol.
    • This can be life-threatening if not recognised.
    • Symptoms include severe fatigue, dizziness, low blood pressure, nausea, weight loss and weakness.
  1. Hypophysitis (inflammation of the pituitary gland)
    • More common with ipilimumab.
    • The pituitary controls several other glands, so damage can affect:
      • Cortisol production
      • Thyroid function
      • Testosterone
      • Growth hormone
  2. Thyroid disease
    • Initially an overactive thyroid may occur.
    • This often progresses to an underactive thyroid requiring lifelong levothyroxine.
  1. Type 1 diabetes
    • Less common, but immunotherapy can destroy insulin-producing cells.
    • This can develop rapidly and requires insulin treatment

What does an endocrinologist do?

An endocrinologist will:

  • Monitor hormone levels regularly.
  • Diagnose endocrine side effects early.
  • Prescribe hormone replacement when needed.
  • Adjust medication during illness, surgery or stress.
  • Educate patients about emergency situations such as adrenal crisis.

Some useful questions for a consultation include:

  • Which endocrine glands have been affected by my immunotherapy?
  • Is my adrenal insufficiency expected to be permanent?
  • Do I need regular pituitary hormone testing?
  • Are my hydrocortisone and levothyroxine doses appropriate?
  • What blood tests should I have and how often?
  • What are my sick-day rules, and when should I double or triple my hydrocortisone?
  • Should I carry an emergency steroid injection and wear a medical alert bracelet?
  • Could my testosterone or other hormones also have been affected?
  • Which symptoms should make me seek urgent medical attention?

Because many endocrine side effects of immunotherapy can persist for life, good endocrinology follow-up is just as important as ongoing oncology follow-up. The encouraging aspect is that, once identified, most hormone deficiencies can be managed very effectively with replacement therapy, allowing people to maintain a good quality of life.

With a history of ipilimumab/nivolumab, severe immune-related colitis, and other questions about hydrocortisone, cortisol, levothyroxine and adrenal function, an endocrinologist plays a key role in ensuring that any hormone deficiencies are managed safely alongside your ongoing cancer treatment.

Endocrinology is the branch of medicine that deals with the body’s hormone-producing glands, including the:

  • Pituitary gland (the “master gland” in the brain)
  • Thyroid gland
  • Adrenal glands
  • Pancreas (which produces insulin)
  • Testes or ovaries

These glands regulate energy, blood pressure, metabolism, stress response, temperature, sexual function, and many other essential functions.

Why is it important after immunotherapy?

Immunotherapy can cause immune-related endocrine disorders. The most common are:

  1. Adrenal insufficiency
    • The adrenal glands may stop producing enough cortisol.
    • This can be life-threatening if not recognised.
    • Symptoms include severe fatigue, dizziness, low blood pressure, nausea, weight loss and weakness.
  1. Hypophysitis (inflammation of the pituitary gland)
    • More common with ipilimumab.
    • The pituitary controls several other glands, so damage can affect:
      • Cortisol production
      • Thyroid function
      • Testosterone
      • Growth hormone
  2. Thyroid disease
    • Initially an overactive thyroid may occur.
    • This often progresses to an underactive thyroid requiring lifelong levothyroxine.
  1. Type 1 diabetes
    • Less common, but immunotherapy can destroy insulin-producing cells.
    • This can develop rapidly and requires insulin treatment

What does an endocrinologist do?

An endocrinologist will:

  • Monitor hormone levels regularly.
  • Diagnose endocrine side effects early.
  • Prescribe hormone replacement when needed.
  • Adjust medication during illness, surgery or stress.
  • Educate patients about emergency situations such as adrenal crisis.

Some useful questions for a consultation include:

  • Which endocrine glands have been affected by my immunotherapy?
  • Is my adrenal insufficiency expected to be permanent?
  • Do I need regular pituitary hormone testing?
  • Are my hydrocortisone and levothyroxine doses appropriate?
  • What blood tests should I have and how often?
  • What are my sick-day rules, and when should I double or triple my hydrocortisone?
  • Should I carry an emergency steroid injection and wear a medical alert bracelet?
  • Could my testosterone or other hormones also have been affected?
  • Which symptoms should make me seek urgent medical attention?

Because many endocrine side effects of immunotherapy can persist for life, good endocrinology follow-up is just as important as ongoing oncology follow-up. The encouraging aspect is that, once identified, most hormone deficiencies can be managed very effectively with replacement therapy, allowing people to maintain a good quality of life.


Comments and questions are always welcome. Please feel free to add yours.