Adrenal Insufficiency United has named April as Adrenal Insufficiency Awareness month. In honor of that, I’ll share some facts about my condition, Secondary Adrenal Insufficiency (SAI):
🔹My SAI was caused by my congenital panhypopituitarism. Basically, my pituitary gland does not function sufficiently enough for survival without assistance. This means my Adrenal glands do not receive the signal to create “cortisol”.
🔹Cortisol helps regulate blood pressure, fluid retention, electrolyte balance, and more. It is the body’s response to stress, and without it, the complications associated with unstable blood pressure, dehydration, and lack of essential nutrients in your body can lead to shock, coma, and death. This is called an “Adrenal crisis”. If diagnosed and treated in a timely manner, an AI patient in crisis can recover fairly quickly.
🔹There is no cure for my form of adrenal insufficiency.
🔹Treatment is a trial and error guessing game, because it is very difficult to track cortisol levels in the body.
🔹Normally healthy people secrete cortisol in response to all stressors; physical, emotional, in response to injury, shock, or simple illness.
🔹 Because my body does not produce cortisol on its own, I have to take pills to make up for it. This is a guessing game, and sometimes it is difficult to know how much/often I should “stress dose”.
🔹 Sometimes, even when following proper treatment, our cortisol levels can drop suddenly, resulting in an Adrenal crisis.
🔹 Because this condition is so rare, it is not as well understood even among medical professionals. As a result, just about every endocrinologist has a different opinion on how stress dosing should be implemented, which can lead to over or under treatment of AI patients.
🔹 Many ERs are not well educated on this condition because of its rarity, and unfortunately this has led to preventable deaths of AI patients who were not given the immediate emmergency attention necessary to save our lives during an Adrenal crisis.
🔹 AI patients have to carry an emergency injection kit containing a large dose of corticosteroids in case an Adrenal crisis comes on rapidly. Two weeks ago, I had my third adrenal crisis, and I had to give myself the injection because I kept fading in and out of consciousness. Without it, I might not have been able to make it to the ER.
🔹 An ER once refused treatment and turned me away because they did not believe I was having an Adrenal crisis. I went home to rest, and my health deteriorated further. I went to a different ER and was told that I was in fact having a crisis, and my blood pressure was dropping at an alarming rate. Had I listened to the first ER and stayed home, I very likely could have died.
🔹 Symptoms of low cortisol can be very vague; lethargy, nausea, abdominal pain, weakness, increased thirst, diarrhea, vomiting, and difficulty concentrating are the most common.
🔹 If recognized early enough, a crisis can be avoided at home by drinking extra fluids and electrolytes, taking a large oral stress dose as instructed by your doctor, and resting.
🔹 Because symptoms are so vague and AI is so rare and difficult to test for, many patients go years without a proper diagnosis. Lack of awareness can be fatal.
It’s adrenal insufficiency awareness month. Share this post, or copy and paste it into your own status to help educate others on this disorder.
Awareness of AI can be a matter of life and death for us when we go to an ER for emergency treatment.