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Warning-sign checks

Congenital adrenal hyperplasia: when to get help

Go through these in order and stop at the first one that applies. If you are reading this for someone else, answer for them.

  1. 1

    Is any of this happening now?

    Call 911

    Seek emergency help for a baby or person with possible CAH who has repeated vomiting, marked weakness, severe dehydration, unusual drowsiness, confusion, a seizure or collapse.

    These may be signs of adrenal crisis.

    Follow the personal emergency plan, give emergency hydrocortisone if trained and instructed to do so, and contact emergency services.

    Other emergency signs, for anyone
    • Someone who is struggling to breathe, gasping, choking, or cannot get words out
    • Someone who has chest pain, tightness or pressure lasting more than a few minutes
    • Someone who has sudden weakness or drooping on one side of the face or body, slurred speech, or sudden confusion
    • Someone who is unconscious, or cannot be woken
    • Someone who is bleeding heavily and it will not stop with firm pressure
    • Someone who has had a seizure that will not stop, or does not wake up afterwards
    • Someone who has lips or skin that look pale, blue, grey or blotchy
    • Someone who you believe has taken an overdose or swallowed something poisonous
  2. 2

    Is any of this happening?

    Be seen today

    For someone with known CAH, inability to keep glucocorticoid medicine down is urgent.

    Do not wait for severe symptoms to develop.

    Follow the written plan and seek same-day advice if the plan is unclear or symptoms are not improving.

  3. 3

    Does any of this apply?

    Book an appointment

    A fever, significant injury or planned operation may require stress dosing.

    Arrange routine follow-up if there are changes in growth, weight, blood pressure, puberty, periods, acne or body hair.

    Also discuss ongoing tiredness, dizziness, fertility concerns or signs of excess steroid exposure.

    These changes may mean that monitoring or treatment needs review, but they are not usually emergencies by themselves.

Every sign above is quoted from the sofidex article on Congenital adrenal hyperplasia. If you are not sure, err upward — it is always reasonable to be checked.