Adrenal Crisis #1

Long Post Warning! :) I tried to condense it, but it was a several-day stay and LOTS to share.

---

I wish I could say that my experiences are unique, but unfortunately, my experiences seem to be the rule, not the exception. I am in a Facebook group for adrenal insufficiency support (15k+ members). In this group, the posts are about one of two things - advice when symptoms arise (to go to the hospital, to stress dose, etc.) or they are emergency department horror stories.

I'll preface this post by saying a few things. I am not planning on sharing the hospital names or provider names. The lack of adrenal crisis treatment knowledge is widespread across the country, and it's a HUGE issue. These two hospitals are not unique.

I am not intending to speak negatively about either hospital; I am intending to share my experience so the things I learned can hopefully prevent such suffering for others.

---

Here is my first one (August 24th, 2025):

Adrenal Crisis #1: 0/10 Recommend

Etiology: I will never actually know what caused my first adrenal crisis, but my husband, sister, and one friend had the same symptoms (vomiting & diarrhea). So, fortunately, I could identify that the trigger was exogenous (either food poisoning or a GI bug). I suspect food poisoning because the other 3 bounced back very quickly, but I'll never know.

What happened: It all started after my baby's first birthday party - great, right? Everything went well and it was a good time. It all started as we were walking out to the truck. Nausea hit. So, at this point I had gone through the extended underdosing period (April - July) where I was hanging on by a thread. Heavy nausea was by no means new to me.

When we got home, I laid down on the couch, but the nausea was getting significantly worse. My sister and husband gave my baby dinner and not too long into it, I went to bed - couldn't lay on the couch anymore. It was some time around 1:00am when the diarrhea and vomiting started. It continued until the morning when my husband, sister, and baby woke up. I knew I needed to go to the hospital.

When vomiting and diarrhea occurs - I know what I am supposed to do. I am supposed to give myself the emergency injection (solu-cortef) into my thigh muscle and then I call 911. At every appointment, they remind me, "inject & 911". The problem is that when I am in adrenal crisis - what happens? My blood pressures plumets and my heartrate skyrockets the nausea is overwhelming - and cognitively, I am in some other world. This was the first time an adrenal crisis had occurred, and I was in NO shape to administer. I was also scared to call 911. That part is my fault, I know, I know. I got over this fear with adrenal crisis #2.

All I could manage to articulate to my husband and sister was that I needed to get to a hospital. I do not know how I managed to get in the truck, but I did and my poor husband drove me.

Lesson #1: The first mistake I made was having my husband drive me (don't worry, it's not him, he's a great driver). I truly don't even know how I made it there. But I say this was the first mistake for two reasons: (1) I underestimated the life-threatening state I was in and (2) if you go to the hospital via ambulance, you avoid the triage situation and you can tell them which hospital to take you to (almost always).

That said, I don’t remember a ton from arriving (half collapsed) to being wheeled back to a room (luckily bypassing waiting room). This is a combination between blocking out as much of that hospital stay as possible and the plummeting blood pressure, sky high heart rate, overwhelming nausea, and confusion/dizziness.

What I remember next is being in the room and waving my arm around with my emergency medical bracelet.

The bracelet has 4 lines:

(1) Adrenal Crisis Risk

(2) Administer solu-cortef IM (in patient bag) or 100mg IV hydrocortisone bolus - immediately

(3) Call 911

(4) Call (my husband's name and number).

There were a few nurses in the room, and I kept waving my bracelet and pointing to my Tupperware. I have a Tupperware container (I carry with me when I leave the house) with the prescription itself stating my name, the vial of medication, 2 needles, the syringe and alcohol pads. Actually, it's two sets of those, they say to always have two in case something goes wrong with the first one.

I just kept repeating, I need my shot I need my shot. The nurses were putting in an IV for fluids and taking blood. "We need to wait for the doctor." About this time, my husband had to leave to take our dog to camp and get home for the baby because my sister had to fly back home (she was visiting for his first birthday). I am fiercely independent (and stubborn) and insisted my husband be with the baby, I knew I would be okay.

The doctor came in, and I said, "I have adrenal insufficiency from Cushing Syndrome; I had an adrenalectomy on April 21st I am steroid dependent. I have been vomiting and having diarrhea all night, I need my steroid intravenously". I know it was not as coherent as that - but I do know I told him my diagnosis and the urgency for the shot or iv steroid.

He said we needed to wait for blood results before giving me anything.

I honestly needed to pause before continuing with this story. I am VERY good at advocating for myself. I have little patience for not being heard but take away my mental clarity and that self-advocacy ability slips away right with it. It's hard to look back without wanting to scream...very angry things. Every piece of documentation I will be sharing says "do not wait for labs, administer IV hydrocortisone immediately".

As I was laying there - the nausea getting worse, I remember feeling less and less coherent and sicker. I just kept saying I need my shot.

If treatment is delayed in the hospital, I can administer the shot myself. However, I couldn't sit up, let alone get up, or get the shot.

This video explains how to administer the shot:

(1) the vial comes as two parts (water and powder separated), you pop the cap to release the water into the powder

(2) lightly mix without shaking

(3) attach the thicker needle to the syringe

(4) puncture the vial and measure the medicine

(5) replace the needle with a slightly thinner one

(6) alcohol wipe the area

(7) stab in leg muscle - slowly

So, I laid there deteriorating, staring at the shot that would save my life. They gave me something (I think for the nausea - I still need to request those records), but whatever it was made my already incoherent state even worse. Absolutely nothing was processing by then.

The nurses came in a time or two to check on me (my vitals were terrible, BP scary, HR way high). I just kept saying, I need my shot I need my shot.

I remember the doctor coming in, finally. “We’re going to get you your steroid, we just need the blood results and we’re going to do a ct”.

During this time my sister, husband, and brother-in-law were trying to contact me. I was trying to text here and there to say they wouldn’t give me my shot and were going to do a ct scan, but then the phone became useless. I didn’t know why they’d do a ct -I remember saying, what do you want to see my missing right adrenal gland?

This next part keeps replaying in my mind. My brother-in-law was calling, and I could see it. My phone lit up, and it said brother-in-law. But I couldn’t put together it ringing and answering it. I just stared at it like brother-in-law is calling "I wish he were here to tell them what to do". But it couldn't process that I could answer it. So, they wheeled me to imaging and I had a ct. Honestly, I don’t remember much for another big block - last thing was a kid who looked like he was 12 wheeling me to imaging. I told him I didn't need a ct scan (in hindsight that kid probably thought I was nuts). The next thing I remember is someone from medical transport coming in and saying, "I'm here to take you to the ICU floor, you're on pcu status." Is a doctor going to explain what's happening? This person had no idea. Well, he admitted you, so I'm sure they'll tell you on the floor.

At some point during the time gap (I guess) they did administer 100mg hydrocortisone intravenously. I was slowly coming to a bit. I still felt horrrrible, but I wasn't worried I was going to die. So pcu status on icu floor means that it's safer to keep you on the icu floor because it's more likely you are headed in that direction than being stable on a general floor. How do I know this? While no one was telling me anything, I asked ChatGPT. I was still getting sick, and I needed a nurse to help me go to the bathroom every time - which in an ICU room is a metal toilet in the corner.

They gave me Zofran in the IV for the nausea, fluids, and the effects from my steroid were finally kicking in, easing up a bit. Once I was stable - my bp and hr still out of normal ranges, but not in danger zones, my wonderful neighbors dropped off a bag my husband packed (and flowers :), I love flowers). Others sent flowers too, it helped :). My husband was home with the baby (as I insisted).

Still, no one was telling me anything, just nurses monitoring my vitals, refilling IV fluid bags and intermittently giving me IV steroids (good) and antibiotics (why?). This hospital did not have a patient portal (how is that even possible?), so, any blood results that came back I couldn't see. While this was all going on they were waiting for c.dif results (iykyk), they said they would need to wear full PPE until results came back. Aside from gloves, there was no PPE. They got lucky, hours later it came back negative. I was tired, scared, and sick - and still no one was giving me any updates. It may have been 6 or 7 hours later that an MD came in. I tried to explain to him about getting sick, my previous cushing diagnosis, my adrenalectomy, my current adrenal insufficiency diagnosis, and the crisis. I realized very quickly, it was like explaining the color blue to someone born blind.

The other thing I know - from pervious life experiences is that no matter how useless, incompetent, cranky a healthcare provider is, you have to be nice. Like overly nice, like corporate nice, like the easiest patient on the floor, OR they will not help you.

So, while I wanted to ask why he was so useless, instead I wrote down my endocrinologist's name and number. I told him if it was after business hours (my mentality clarity was still fogged), that the answering service operator would get in touch with the on-call endocrinologist from the team. He took the paper - and never called (my whole stay actually). I got very little updates for the next 24 hours. Hydration, iv steroid, iv antibiotic, blood tests, bp every 30 minutes, ekg attached. I had to call the nurse every time I needed the toilet. During this time, I was also incessantly calling and messaging in the portal to my endocrinologist. I'll go into that later - but all I can say is I didn't hear back until after I was discharged. The nurse (one I was lucky enough to see for 3 of her shifts - was cranky AF). Still, I remained polite. On the third shift she opened up a bit, you know I think I have 3 more years left in me and then I definitely can't keep working with people. Lovely.

I started improving the day after that, I progressed from chicken broth to 'soft solids' approved. For lunch, they brought me meatloaf with gravy, mashed potatoes, and steamed carrots. This seemed absurd to me, so I sent the picture to my registered dietitian (more on this amazing human, soon).

I have only had chicken broth since the extensive diarrhea and vomiting; I shouldn't eat this right?

No, do not eat that. Ask if you can have scrambled eggs or rice. Start small, take it slow.

So, I did, and they brought back scrambled eggs and rice.

So, once you start stabilizing from an adrenal crisis, you get hit with a wave of emotions, it's intense anxiety, depression waves - it's the result of cortisol plummeting and then getting the lifesaving dose that is 100mg. I requested Ativan, I knew my high anxiety would only exacerbate everything else going on. They said no, they said that Ativan was reserved for alcohol-related patients that had alcohol poisoning or detox. They asked if I wanted a valium.

I will not explain how I feel about this, I'll just say I declined the valium and focused on deep breathing.

The next day was more of the same and this time it had been over 24 hours again since I heard from any doctor. Then an infectious disease doctor came in. He said I was negative for flu, covid, and a bunch of other viruses. I don't think you need further ID work. Really, shocking. Then, the rounding md came in. Did you get in contact with my endocrinologist? No. Didn't get a chance to call. He had no updates for me; he said my vitals were improving and we'd continue to monitor - start the transition of taking my steroid by pill and taper the IV.

By the next day, I was reaching my limits. No one knew anything, they wouldn't call my endocrinologist and my endocrinologist would not respond (message or call) to me (more what I learned about this later). I had gone 12 hours without vomiting or diarrhea and my pill was staying down, and I just wanted to go home. So, I told them I would like to go home. They said I needed to do two laps around the floor and then if my bp and hr were in normal ranges after they'd do the discharge papers. I did this and while vitals were super borderline, they were enough to let me go. At this point, I knew I was out of the woods for going back into an adrenal crisis and I wanted to shower, lay in my bed, and get back to my baby and husband.

They prescribed an antibiotic that I clearly didn't need and had warnings all over that it could cause diarrhea and nausea. I'll refrain from reacting to that, but no, I did not take it. It took another 24 hours following discharge for anyone at the endo clinic to get back to me, but after a very tearful phone call, they "fit me in" for the next day.

I didn't handle that appointment particularly well, one of the most frustrating parts of the situation was not being able to get in touch from anyone from the clinic. I wasn't rude (again, angry patients get nothing), but I was just straight to the point.

I am still struggling with this (to an extent), but I have come to the acceptance point that during emergencies, that is not a reliable resource. There is a mychart messaging system and a phone call system. I use both every time and get nowhere. Also, more on this later.

I came home and took the rest of the week off. The following Monday was Labor Day, so it gave me another day buffer.

Lesson #2: when you go into adrenal crisis, you need more than 5 days post-discharge to recover. This is why between Aug 24 and October 21, I had 1 hospital visit (no admission) and 1 sick day managed at home, and then my second adrenal crisis. I am now taking that short term disability break.

Key Takeaways:

• Call an ambulance - don't have someone drive you.

• Wear your medical alert bracelet (no, it didn't help me, but I'm glad I had it)

• Bring your patient details & medical history card (laminated). (Shop page)

• If the hospital won't call your endocrinologist, ask for a consultation for your diagnosed condition. If this is denied, request medical transfer to where they have an endocrinologist consult.

• Take time off after - at least 6 weeks.

On deck: why it is so impossible to get in touch with my endocrinologist team and endocrinologists/provider selection

If you made it this long, thank you for reading. I am going to do a post on "what should happen" at the ED and what you can do if it isn't happening.