Preparing for an adrenal emergency / crisis

Having adrenal insufficiency can be frightening.
We hope this information will help alleviate some of the anxiety around getting proper emergency care.

Educating yourself, your family, and your medical providers is one way to protect yourself against medical errors and be prepared for emergencies.

1. You need a good doctor.
   Being steroid dependent means being medical provider dependent also. We rely on their expertise to make good decisions regarding our care. The passing of friends in our community (from inadequate care) should be enough to impress upon us the need for the right physician. If you find yourself begging for proper care, it’s time to move on. It’s worth your time to keep searching until you find the right one. The right doctor will listen to your concerns with respect. Be willing to compromise on issues you may not agree on. Work with you to create an emergency/crisis plan; and be willing to write a brief letter outlining what you need in an emergency/crisis. And not argue about writing scripts for stress dosing as well as an emergency injection.
   
2. Put together a personal file.
   It should contain a copy of your emergency care letter from your doctor. In addition, you’ll want a few well-chosen charts and papers to educate medical personnel on emergency care for adrenal insufficiency. Symptoms are a good place to start. There is a variety of symptoms you may experience. Emergency care for AI is often based on symptoms rather than tests. For example, if you’re vomiting but have no fever, current recommendations say an emergency dose of IM or IV cortisol is needed. You may have an infection which sets off low cortisol symptoms. It may not present with classic crisis symptoms, but you’ll still need extra cortisol to overcome it. Choose the documents for your file carefully. Most doctors don’t have the time to wade through a stack of papers. You need one for each issue, straight and to the point.  
   
3. Listen to your body.
   Everyone is different. Only you can recognize the pattern of progression from early symptoms to crisis. Journaling helps you see the pattern so you can take more cortisol before it gets worse. Discuss your individual needs with your doctor and create a plan to prevent low cortisol from reaching the crisis point. This 2013 study from the National Institutes of Health recognizes the need for more education on this subject and may be a useful starting point for discussions with your medical provider:
   Ashley Grossman, Gudmundur Johannsson, Marcus Quinkler, Pierre Zelissen: THERAPY OF ENDOCRINE DISEASE: Perspectives on the management of adrenal insufficiency: clinical insights from across Europe. Eur J Endocrinol. 2013 Dec; 169(6): R165–R175. Article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3805018/
   
4. All patients with adrenal insufficiency need an emergency injection kit.
   Anyone is at risk of a sudden accident or trauma. Shock or injury creates an immediate need for more cortisol. Without emergency treatment, death can occur in as little as 30 minutes. It’s important to discuss a crisis plan with your doctor. Here’s an excellent paper to help start the conversation. The first paragraph says it all: Allolio B:Extensive expertise in endocrinology. Adrenal crisis. Eur J Endocrinol. 2015 Mar;172(3):R115-24. Full text article: http://www.eje-online.org/content/172/3/R115.full
   
   At its most basic, your kit should contain a vial of Solu-Cortef or dexamethasone, a syringe, and alcohol wipes. Syringe size should be 3ml, 22 or 23 gauge, and 1′ to 1 1/2″ needle length. You will need a script for 2 vials and 6 syringes, in case of malfunction. Most pharmacies will include the syringes, but some don’t. It’s easier to have your doctor write them on the script to avoid confusion when getting it filled. In some countries instructions say to change the needle mid-procedure. One needle is all that’s needed, and changing it before injecting is difficult in an emergency. Instructions for injecting should also be included.
   Read also: Your emergency injection kit: What it should contain and how / when to use it
   
5. Learn how to give yourself an emergency injection. There are many injection videos online. Ask a friend or close relative to watch the video with you and be prepared to help in an emergency. This video from the SUCCEED Clinic gives a clear, easy to follow demonstration. It is ok to inject through clothing if necessary.
   https://www.youtube.com/watch?v=nuJ9Wj_eb4U
   
   This site in the UK has excellent publications which can be downloaded and printed for free. Although it is focused on primary AI, it has universal care information that makes a good introduction to AI for doctors, nurses, schools, employers and many more: https://www.addisonsdisease.org.uk/
   
6. Make copies of your file.
   One for your house, one for your car, and one for the hospital ER. Be sure they each have a copy of your doctors’ letter.
   
7. Make an appointment with the local emergency room manager.
   This way you’ll have the opportunity to share your concerns when it isn’t an emergency situation. Be respectful. The right tone of voice will help get your point across. Let them know you have a steroid dependent condition and you know not all medical personnel are educated about your care in an emergency. Give them time to look through your file and let them know you’re ready to answer any questions they might have. You may also want to ask if the hospital has a patient advocate. If so it’s worth your time to have a chat with the advocate while you’re there.