Anxiety and Adrenal Crisis: Addison's Disease Day 2022

There is a lot of information available about the symptoms of an adrenal crisis and what to do in an emergency, should you have one. There are emergency cards, hydrocortisone injections, and medical ID jewellery – all of which are an appropriate safeguard for you.

By Pat McBride

I feel it is important to say though, that for some patients, the mere thought of having an adrenal crisis can make them feel very worried or cause chronic anxiety. They may well suffer panic attacks, when these feelings of anxiety become intense and overwhelming. Physical symptoms of a panic attack include shortness of breath, sweating, an increased heartbeat or blurry vision, which the patient may feel could prompt an adrenal crisis, or actually is one.

The extent of this anxiety can mean that some will not leave the house without their injection, even if they are only going for a local walk. Some will be checking furiously and often, that their injection is in date. Some will be so anxious, it literally rules their lives.

Where can this anxiety come from?

  • If you were offered limited information when given hydrocortisone or, the way you were told about increasing your doses, and the need for injection in emergency, this may have felt quite alarming and could cause long-term anxiety.
  • You’ve had an adrenal crisis. From that experience, you absolutely dread it happening again. Maybe you go to great lengths to avoid anything you felt was the cause of this episode, such as certain food, social activities or public places in case of catching anything.
  • Talking to another patient who has had a crisis. They’ve unwittingly regaled you with the drama they went through in full technicolour! Or, you have read a patient’s experience and are horrified that the same thing could happen to you.
  • You could have had a bad experience in your local hospital, where they didn’t understand about hydrocortisone and how to treat you in a crisis.

It’s quite understandable then how this anxiety can start, given any of the above situations.

 

What can help?

1. Straightforward information

The Foundation provides a number of free resources that can safely and clearly inform you, your family, friends, health care professionals, employers and schools about your hydrocortisone needs. Having copies of these can help you feel reassured about what to do in the event of needing extra hydrocortisone or an emergency injection.

2. Sensible but realistic prevention

Most of the population naturally would want to avoid becoming unwell and follow the routines of washing their hands regularly, steering clear of someone with an obvious bug, and not eating food that wasn’t safe etc. This is generally an automatic response that people won’t think nor worry too much about. They keep themselves as safe as possible, without it affecting their lives. Taking steroid therapy at replacing levels doesn’t compromise your immune system, so you aren’t at any greater risk of catching something or incurring food poisoning than the rest of the population.

3. Storing medication

Perhaps keep one box with all your daily tablets in a kitchen cupboard, near to the kettle - as you make a drink, they are to hand. Have another small box with a lid, on your bedside table. Spare steroid tablets can be kept in your bag/purse or wallet in a small pill box. We have items to help you store medications and injections. Injections can be stored in the fridge. This can help you manage where you keep your medication, in the same place all of the time, but not be so visible that they manage you so much. This won’t take away the importance of them, but help you feel more in control.

Patient Experience

By the nature of forums and internet, media and patients’ stories there will be some dramatic incidents told that affected them at the time, and of course they wish to help raise awareness. However, there are appropriately managed adrenal crises, that the patients were treated efficiently, and recovered with no lasting scars. Here are two real crisis events that may be more reassuring:

  • Patient developed food poisoning after evening meal, with vomiting and diarrhoea a few hours later. Couldn’t keep tablets down, so out of hours GP phoned who arrived promptly after hearing ‘adrenal insufficiency/ vomiting’. He gave patient 100mg hydrocortisone injection, anti-sickness injection and prompted a large glass of Dioralyte to be drunk. After half an hour, the patient settled, slept and recovered the following day.
  • Patient went to dentist for tooth extraction. Had taken double dose of steroid before procedure but also took their injection with them. The extraction was difficult and long and the patient began shaking with shock. The dentist stopped and injected quickly – with her own supply she kept in the fridge, as was previously aware of patient’s pituitary condition. Extraction continued and the patient recovered quickly.

Speaking to another person who has experienced a crisis may help ease anxieties as most situations are managed well, with the correct provisions in place. You can ask if your hospital offers group steroid education. Or you could contact and attend a Local Support Group. Holly, our endocrine nurse adds, “When I deliver steroid education to groups, people ask in every session”, “How will I know I am going into crisis, what does it feel like etc.” Having someone in that group explain supportively can be useful, for example “You will absolutely know”, “Do not hesitate to seek medical help”, “I felt so much better nearly instantly, once the injection was administered.”

Putting this into perspective

Of course, we know that there’s a chance we might become unwell or may need an operation, which will prompt an increase of our hydrocortisone or an injection. What we should know too is that if we wait for these events in fear, it will make us anxious – stealing our joy and keep us very busy worrying. The Foundation continues to raise awareness so that patients and health care professionals have practical and up-to-date advice, around hydrocortisone. We work to keep you safe, we are here to help reduce your worry and to not to let these overwhelming fears disrupt your life.