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Adrenal insufficiency

What are the adrenal glands?

The adrenal glands are next to the kidneys. They produce important hormones (chemical messages) to control how the body works. One of these hormones is called cortisol. Cortisol is the body’s natural steroid and helps:

  • to control blood sugar levels
  • the body deal with physical stress, such as illness
  • to control blood pressure and circulation

Adrenal insufficiency

If a person is unable to make cortisol this is called adrenal insufficiency. Symptoms include feeling feeling weak, tired and achy and sick. If it is left untreated, your child can develop an adrenal crisis which is life-threatening.

To avoid these problems people with adrenal insufficiency will need to take a replacement dose of steroids. This comes either as a tablet, granules in capsules or a liquid.

The most common medication used is hydrocortisone which will need to be taken several times a day, but other forms may be prescribed.

Even if children do not have symptoms of adrenal insufficiency it is still important they take their replacement steroids.

What happens when my child feels sick?

In a person without adrenal insufficiency the body naturally increases cortisol in times of illness or trauma.

In a person with adrenal insufficiency cannot increase their cortisol, and your child will need to take additional steroids when unwell. This is called sick day or stress dosing. Without additional steroids this could lead to an adrenal crisis.

Usually the additional steroid is something to take by the mouth, but in an emergency an injection may need to be given.

How often does my child need hydrocortisone?

You and your child need to know their dose and time of day they need their replacement hydrocortisone. This is usually given 3 or 4 times per day. Sometimes the doses are different during the day, for example they might need a larger dose in the morning.

You and your child need to know their dose and time of day for sick day dosing hydrocortisone. This is a higher dose to keep them safe during illness. This is usually given 4 times per day (every 6 hours).

As your child gets older and grows, their doses of hydrocortisone will increase. This will be discussed with your doctor in clinic.

To be safe, we advise your child wears a steroid medic alert bracelet. We can help you to personalise your order with information about your child’s condition. We recommend The ID Band Company.

Photograph of medical bracelet with steel identification engraving and steel clasp Photograph of metal Medicalert bracelet Photograph of green children's medical alert bracelet with cartoon dinosaurs

Information:

Always have a spare supply of hydrocortisone available and in date. You must not run out of medicine.

If you are uncertain about any aspect of your child’s care and treatment, please ask your doctor or specialist nurse. It is important that you understand your child’s condition and why they are taking steroids.

Should my child have vaccines?

Your child should receive all the usual childhood vaccinations as normal. People with adrenal insufficiency are not considered to be immunosuppressed (low immunity). Please talk to your team if you have any concerns about this.

My Cortisol app

Great Ormond Street Hospital have developed a free training app for giving an emergency injection of hydrocortisone. The app is a real time video showing the technique. There is also space to record your child’s doses and emergency plan. The My Cortisol app is available for both Apple and Android devices.

My Cortisol App logo of a red needle with Great Ormond Street Hospital NHS logo

Traveling abroad

On long haul flights, give your child their usual morning dose at 6 to 8 hourly intervals.

Top tips
  • Always carry extra medication and make sure that you carry this with you in hand luggage.
  • Take and wear your medic alert bracelet or equivalent.
  • Take your steroid treatment card. Make sure it is filled in and up to date.
  • Take an emergency supply of hydrocortisone and make sure that it is still in date. If it is out of date, request a new supply.
  • Check that you have a enough medication for the holiday duration, including extra in case your child becomes unwell or your return is delayed. Getting medications abroad can be difficult sometimes and they are not always the same as in the UK.
  • You will need a Letter for Customs as you will need this for traveling with needles and syringes. Our endocrine nurses can provide you with this on 0114 305 3676.

Dealing with emergencies abroad

The same sick-day rules apply with hydrocortisone.

If you need to give an emergency intramuscular injection of hydrocortisone, your child needs to be taken to the nearest hospital as soon as possible. Let the doctor know that emergency hydrocortisone has already been administered and that your child is on steroid replacement therapy.

Your child should not be discharged until the staff are satisfied that blood glucose and salt levels are normal.

Remember to take your steroid card and medical details with you as this will help the local doctors.

Contact us

If you have any questions or concerns, please contact the Endocrine Specialist Nurses Monday to Friday between 9am and 5pm on 0114 226 7815.

Or on evenings, weekends and Bank Holidays, call on 0114 271 7000 and ask to speak to the medical doctor on call for advice.

Nurse Specialist in Late Effects on 0114 305 3676.

Further resources

For more information please visit our other resources for adrenal insufficiency sick days and how to give emergency injection of hydrocortisone.

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Disclaimer

Please note: this is a generic information sheet relating to care at Sheffield Children’s NHS FT. These details may not reflect treatment at other hospitals. This information is not intended as a substitute for professional medical care. Always follow your healthcare professionals’ instructions. If this resource relates to medicines, please read it alongside the medicine manufacturer’s patient information leaflet. If this information has been translated into another language from English, efforts have been made to maintain accuracy, but there may still be some translation errors. If you are unsure about any of the guidance in this resource or have specific questions about how it relates to your child, always ask your healthcare professional for further advice.

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Western Bank
Sheffield
S10 2TH

United Kingdom

Switchboard: 0114 271 7000

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