I didn’t immediately go to an endocrinologist, because I thought I could manage secondary adrenal insufficiency on my own. After all, I’d conquered living with mast cell activation syndrome (MCAS), arguably one of the most complex health conditions in existence.

I assumed that because secondary adrenal insufficiency has been studied since the 1950s and could be treated with one daily medication, it would be easier to manage than MCAS. I knew low cortisol could be life-threatening, but surely, it was better than drowning in hundreds of mast cell chemicals, right?

In December 2021, I passed out five hours after a skin cancer biopsy. Retrospectively, I believe the epinephrine in the lidocaine shots tanked my cortisol in addition to the bleeding and stress. I felt nauseous, confused, and overwhelmingly sad. My head also hurt, but I had no rashes or flushing, so I knew my mast cells were likely not to blame. (MCAS and AI symptoms are SO similar!) I took prednisone and waited an hour for it to kick in, but I was still getting worse. When I began vomiting, I knew I needed medical help.

I told the emergency room nurse at the check-in desk that I had adrenal insufficiency and my cortisol was low. I assumed I would be taken to a room immediately for IV steroids. Instead, she told me to take a seat as if I was just constipated. 

As the room faded in and out, I wobbled back to the desk and begged for an IV. “My cortisol is really low,” I said. “I’m going to pass out.”

*crickets*

“I need steroids.”

*crickets*

“I am going to go into adrenal crisis if I don’t get medication soon.”

The nurse finally looked at me, “Oh, you have Addison’s? Get her a room.”

Was this a medical facility or a speakeasy? Apparently, “Addison’s” was the passcode to treatment, even though it’s a more rare form of adrenal insufficiency that I don’t have. Before MCAS gained awareness, I often had to refer to mastocytosis, a rare type of mast cell disease that I also didn’t have, for doctors to feel more comfortable treating me.

Same shit, different health condition.

“I need a signed emergency protocol,” I told my endocrinologist, who wasn’t the least surprised by the emergency room’s ignorance. 

At first, my endocrinologist handed me an unsigned note. I explained it would be dismissed without a signature. Most emergency room doctors care more about protecting themselves from liability than following peer-reviewed treatment protocols or notes in medical charts.

In 2018, I was hospitalized when a doctor refused my mast cell treatment because I presented her with a MCAS protocol that wasn’t signed. Instead, she attempted to administer morphine, which my protocol clearly indicated I was deathly allergic to. I reported the trauma to patient relations and the Board of Medical Practice, and of course, I got my protocol signed. Now every time a medical professional opens my chart, a threatening pop-up that requires them to read and acknowledge my signed MCAS protocol. 

… which is awesome… until you go into MCAS remission and suddenly your life depends on a different piece of paper.

I thought MCAS remission would entail healing from trauma, not experiencing new horrors. For me, adrenal insufficiency is scarier than MCAS because crises are harder to recognize and can escalate more quickly. At least with MCAS, I always had an EpiPen as backup. There is no auto-injector for adrenal insufficiency! On top of that, epinephrine works fast, but steroids take time to kick in. Adrenal crisis can accelerate into a full body shutdown if the steroids are too little, too late. 

In the end, I got my new permission slip to receive medical treatment signed and added to my medical chart, but I sure as hell wasn’t going to rely on the ER. I vowed to myself that I would do everything to avoid an adrenal crisis. And so began my Boundary Era.

Tips for emergency protocols

• Customize your protocol to fit your body’s needs. If your doctor signs off on a protocol that your body doesn’t tolerate, your protocol could make your situation worse.
• Carry physical copies of your protocol, especially when traveling. Doctors outside of the patients’ health system often ask to keep a copy.
• Save a photo or copy of the signed protocol on your phone.
• Keep your protocol up to date. Ideally, have your doctor sign a new copy annually (even if nothing has changed) to demonstrate your protocol is current.

Update: In June 2024, I successfully tapered off prednisone and regained function of my adrenal glands and HPA axis. However, I still must monitor for symptoms of low cortisol. 

Related posts

My adrenals didn’t RSVP to my MCAS remission party

Interested in re-reading my remission journey? Read the posts.

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