Saturday, March 16, 2019

Needed: Adrenal Insufficiency Awareness

As I mentioned earlier, I was diagnosed in 2016 with secondary adrenal insufficiency (AI) due to radiation treatment for my pituitary tumor. This was confirmed after having two ACTH stim tests. I'm writing this post to work through my thoughts regarding a recent trip to the hospital for the onset of adrenal crisis.

Thankfully it has been a couple of years since I've visited the ER needing a steroid bolus. I only take my medication as directed for specific incidents of stress or illness (which is rare). I was diagnosed with Type-A flu at the end of January and began steroid treatment. The sickness quickly progressed to a secondary upper respiratory infection, but I weaned off the steroid as directed once I was on the antibiotic, and symptoms improved. Unfortunately, sinus congestion did not clear up, and the infection returned. Because I began to feel progressively worse, I started retaking hydrocortisone and was given another round of antibiotics in urgent care. Following the visit, I met with a GP and was advised to stop the steroids; I wasn't taking a high dosage, so we agreed it was probably safe. Two days later, in the middle of the night, I was taken to the ER due to excessive nausea, vomiting, dizziness, and extreme weakness. I could barely walk. Per my instructions regarding adrenal insufficiency, if vomiting occurs, I'm supposed to take hydrocortisone. If I cannot keep the medication down, I must go to the hospital for stress dose steroid treatment.

My husband called 9-1-1 due to the severity of my symptoms.  When the paramedics arrived, they were informed by my husband that I was a patient with adrenal insufficiency and needed stress dose steroids. They found me lying on the bathroom floor, hunched over, a bit confused and trying to respond to questions as I continued to vomit in front of them. They did not know how to treat adrenal insufficiency and did not administer steroids. An I.V. was started in the back of the ambulance and they gave me anti-nausea on the way to the hospital. I requested they take me to a nearby hospital that I've been to before so steroids could be given immediately. Unfortunately, my established medical history did not make a difference. Upon arrival to the ER my husband informed the nurse of my condition and that I needed a stress dose steroid, but she did not respond to his request and said the doctor would evaluate everything and make a decision. Instead of giving steroid treatment first, they wanted to rule out other causes for my symptoms. Blood was drawn (minus ACTH and Cortisol level) and an EKG was ordered. No one looked at my medical ID bracelet, and the doctor did not give permission to treat immediately. Almost two hours passed before a bolus of Solu-Cortef was administered. Once the medication was given, my condition stabilized. Not long after I was released and walked out of the hospital on my own.

As the brain fog lifted and I began to process what happened, I realized the EMS was not properly equipped to handle an adrenal crisis. A medical ID bracelet and medical history was not enough to convince hospital staff that treatment for adrenal insufficiency needed to be given first before ruling out other causes. After my last hospitalization (2016), I took a hospital survey and stated that there needs to be more awareness about adrenal insufficiency. To my disappointment, this did not change anything regarding the way I was treated - even with an established record.

I will be meeting with my endocrinologist for follow-up to discuss how best to handle this situation should it happen again. Read more on this: Understanding Adrenal Insufficiency and Secondary Adrenal Insufficiency - What You Need to Know