“The medullary thyroid cancer isn’t going to kill you. Your adrenal insufficiency, on the other hand…” These were my surgeon’s words at my first post-op appointment in May of 2015.
At first, the endocrinologists made it sound as though living without adrenal glands wasn’t a big deal. “You just take some hormone replacement pills every day.” Looking back, I’m sure they had to downplay the condition a little, because the alternative was living with tumors which would surely kill me eventually. They told me to make sure I ordered a Medic Alert bracelet and told me to take my pills twice a day. They gave me an emergency injection kit with a vial of medicine, a syringe, and a needle. And then they discharged me from the hospital.
I had no idea.
Here are the four most important things I have learned that I want people to know about Adrenal Insufficiency (disclaimer: I am not an MD. These are only my experiences with this disease. Always check with your doctor before making any changes to your medication or treatment!):
1. Adrenal insufficiency stems from many causes. Some people’s immune systems attack their adrenal glands and basically kill them off, others have pituitary problems or take steroids long term for things like asthma and their adrenals don’t get signaled anymore to release hormones. And rare people, like me, have them surgically removed.
2. Adrenal insufficiency is a life-threatening disease. If I don’t take my medication every day at the right intervals, I can and will die. Your adrenals create more than just adrenaline, which is what most people associate with adrenal hormones. Cortisol is the most important one, and it regulates everything from blood sugars to blood pressure and the immune response. Take a moment right now to thank them for me if you still have yours.
3. As long as I am healthy and take my medication three times a day at scheduled intervals, I’m fine (sort of…more on that later). However, if I am very sick, have surgery, am vomiting, experience extreme emotional stress, or am in a serious accident, my body needs extra medicine. A healthy person’s body would automatically release more cortisol to counteract stress on the body. There is no way for me or my doctors to measure how much cortisol I need. I must listen to my body and go by symptoms alone. I always carry an emergency injection of hydrocortisone with me, and so should every single AI patient. If you ever come across someone who is unable to take their oral hydrocortisone or unconscious and they wear a medic alert stating a diagnosis of Adrenal Insufficiency (or “Steroid dependent” or “Addison’s disease”), please give them their shot or tell someone else to do it and call 911. If it is administered, it can save a life. If it is not needed, it will NOT cause harm to the patient.
4. EMT’s, which are different from Paramedics (who have more training), cannot administer patient-carried medication, nor do they stock the hydrocortisone emergency injection on ambulances in Washington state (nor many other states). This means only a paramedic, after getting clearance from their medical supervisor and reading a letter from my prescribing physician, can legally administer my medication to me if I have it with me at the time of the emergency. In as little as 30 minutes, I can go from seeming fine to near death, and if I do not get the medication in time, I will die. I cannot tell you how many stories of deaths and near-deaths I have read in patient forums on Facebook since my diagnosis, and that was only two years ago. Many endocrinologists either do not realize how important the injection is, don’t know that it’s not carried on ambulances, or don’t understand that something as simple as a traffic jam while trying to get to the hospital could be the difference between life and death, and they refuse to prescribe it. A 25-year-old woman in California came down with the stomach flu in 2015 and is still re-learning how to speak and walk because her doctor didn’t prescribe her an injection and the ambulance was stuck in an hour’s worth of traffic. She was in a coma for many weeks. I can tell you many other stories just like that one.
There are so many more things I could say and explain about living without adrenal glands, but I will save those gems for future posts. I am very passionate about sharing my experience in the hope of educating people about this rare but deadly disease. Maybe, because you’ve read this, someone’s life will be saved someday. One can only hope.
For further information, especially if you’re an AI patient:
National Adrenal Diseases Foundation: http://www.nadf.us
Addison’s Disease Owner’s Manual: http://www.addisons.org.uk/forum/index.php?/files/file/99-addisons-disease-owners-manual/
Video tutorial on administering a Solu-Cortef emergency intramuscular injection: https://www.youtube.com/watch?v=nuJ9Wj_eb4U&feature=youtu.be&app=desktop
Hydrocortisone dosing information:
http://www.cahisus.co.uk/pdf/HYDROCORTISONE.pdf
Check to see if there are emergency response protocols in your state/county: http://aiunited.org/state-report-card/
Purchase emergency cards you can carry with your kit: http://shop.aiunited.org
PLEASE get yourself an emergency injection kit if you are an adrenal insufficient patient. If your doctor refuses to prescribe one, have him or her sign a document stating that they are aware of the dangers of you not carrying this medication but are unwilling to prescribe it. Then find a doctor who will. Educate yourself and those around you on administration of the medication. Find out what the protocols are in your area. Sometimes even ER doctors have very limited experience with our disease. Take a document from your doctor detailing emergency treatment to your local ER and ask them to scan it and attach it to your chart. Don’t wait and rely on someone else knowing how to treat you in an emergency!