I have written an update to this post on 8/23/2018.
I am not going to name the hospital I went to in this article. My intention is not to shame this particular hospital for how they handled the situation that I am about to describe, but to share my experience personally. There are many stories similar to my own where this has happened, and in a couple of the cases I am aware of, the patient died due to insufficient care. This is a widespread issue, and shaming this hospital in particular is not going to help.
I just had a hell of a weekend. A hell of a week, actually, but this weekend it all culminated in a rather stressful mess. I have a rare disorder called Panhypopituitarism, and one of the aspects of this condition is Secondary Adrenal Insufficiency, which can lead to a serious condition known as an Adrenal Crisis. Adrenal crises are rare, but require immediate medical treatment or they can lead to some devastating, sometimes fatal, complications.
I’ve had this condition for my whole life. I was diagnosed with it when I was just a kid, so I have grown to understand what my body is telling me when I experience certain symptoms. I have only received treatment for an adrenal crisis twice now, but there were a few times I can remember earlier in my life that were very likely adrenal crises, but I did not understand what that was back then, so they went untreated. I could write an entirely separate article about that, but it would only serve to harm the people responsible for not getting me proper treatment at the time. I can’t blame them. The symptoms can seem vague, though they are way more serious than you would think. I am just lucky that I never experienced the life threatening complications that can arise from a crisis back when I didn’t understand it like I do now.
It can be hard to know if you are heading towards a crisis. They can come on suddenly, or gradually worsen over time. My first adrenal crisis a few years ago came on suddenly, and I was terrified. I could feel right away that something was very wrong, and I immediately recognized the symptoms my endocrinologists had warned me about.
An adrenal crisis, often called an Addisonian crisis (though there is a stark difference between Secondary AI and Addison’s DIsease), can cause these symptoms*:
- extreme weakness
- mental confusion
- nausea or abdominal pain
- a sudden pain in the lower back or legs
- a loss of appetite
- extremely low blood pressure
- skin rashes (this is only in Primary AI, Addison’s Disease)
- a high heart rate
- loss of consciousness
It’s hard to explain exactly how it feels when you know you are in a crisis, but if I had to describe it, it’s like you’re slipping from your own awareness little by little. You can just feel that something is seriously wrong. While it isn’t nearly as dramatic as the movie, I like to compare it to when the main character in “Get Out” is falling into the Sunken Place. While you’re not trapped inside your mind like in the movie, you definitely feel that slipping sensation. Something is very wrong, and you know it. Sometimes you can feel it coming on over a period of time, as I experienced it this last week, and sometimes it just happens so suddenly you are thrown for a loop. I’m not sure which kind is worse, honestly. When it comes on suddenly, it certainly feels more dangerous, but when it’s creeping up on you and you can feel it a little in advance, you have to deal with the fact that you may have to seek help, and at least in my mind, you struggle with when you think you need to seek treatment, worried that you may just be overreacting. I think it’s common in our culture in America not to seek treatment until you are falling on the floor unconscious. Going to the ER when you can walk on your own two feet seems almost shameful somehow. Because I wasn’t feeling like I was in immediate danger, I waited until I was certain these were serious warning signs.
Because I had experienced an adrenal crisis in the past, I knew that I had the same sort of draining feeling I had the first time. It was different considering how long it crept up on me over a period of a few days, but it began to pick up speed and my health began rapidly declining on Friday. That afternoon, I decided to go to Urgent Care and see if they could give me the solu-cortef shot I knew my body needed in order to cope with the lack of cortisol I felt that it was experiencing. By that point, I was feeling the fatigue I had since Monday intensifying, leading to more weakness and shakiness, and just general feelings of nausea and malaise. I was concerned that this was indeed leading towards a crisis. When I went to Urgent Care and spoke with the nurse on staff, she told me that I should go to an ER.
Here’s the thing.
ERs are not a place you want to go unless you REALLY need to be there. It’s expensive, stressful, and you feel like a complete dumbass if you go there for something that might not be serious (more on that later). I thanked the nurse for her advice, but said that I would wait and see how I feel in a little while, just in case I was overreacting. She insisted I go, but I gave her a vague “maybe”, and I left. I called my endocrinologist’s office to ask for advice on how to proceed, but I was unable to contact her. It was a short day for her, and she left the office before she could return my call.
So, I took an oral stress dose of my medication and waited. I fell asleep, and when I woke up around 1am saturday morning, I could really feel the crisis coming on rapidly. I had diarrhea, and no matter how much water I drank (I had drank an entire quart already between friday afternoon and the evening). My palms were sweaty and my legs felt so weak when I was walking, that I had to move slowly and carefully. I was obviously much, much worse than I was when I went home.
I told my fiancèe we needed to go to the ER, and we left. I decided to go to the hospital where my endocrinologist works so that they would have all of my information already on file. It’s a very well-known hospital with a campus that spans over the entire city with multiple offices and buildings all over town, centralized around a large, beautiful main campus. I thought I would be in good hands there. Boy, was I mistaken.
I wanted to make sure the staff was prepared to help me, so I called the ER when I was on my way to let them know that I was coming, and to make sure someone on staff was educated on adrenal crises. The receptionist over the phone sounded annoyed and told me I could tell them what I have when I get there. I told her I might need stress dose steroids immediately as this could be life threatening, and she just said “okay” and hung up before I could say anything else.
When I arrived, they were able to get me into a room quickly, which was nice. The ER itself is immaculate and feels very cozy. I really liked that about it.
Unfortunately, the level of “care” I received was less than satisfactory. As the nurse’s aid went through my chart with me going over my diagnoses, she said that I had “Addison’s Disease” listed in my file. I have Secondary Adrenal Insufficiency, which is very different, so I corrected her. (Addison’s Disease is an autoimmune condition. My adrenal insufficiency is due to a damaged pituitary gland.) She told me that it was listed as Addison’s because my condition was not available as an option. OKAY THEN. Great start. (UPDATE: I spoke with someone at the hospital and confirmed that they did indeed update my file to say “Secondary Adrenal Insufficiency.)
Moving on, my vitals were taken, all seemed fairly okay, but over the hours (and I mean hours) that I was left in that room without any care other than nausea and anti-diarrhea meds, my blood pressure dropped to 110/53 and nobody even acknowledged it. (Low blood pressure is a sign of adrenal crisis)
They did a urine and blood test to check my sodium and potassium levels, which they said would indicate whether or not I am in a crisis. The tests came back normal, so they sent me home with Rx for nausea and pain meds for the discomfort I described in my abdomen. I tried to explain that I thought my body really needed a steroid shot because of all of the crisis symptoms, but she refused based on the test and sent me home. I was gaslighted into thinking I was just being a hypochondriac, and I questioned my own judgement, despite the very clear symptoms I was experiencing. Being made to question myself like that was so embarrassing. I felt so stupid for coming to the ER, I apologized to the staff and went home.
Frustrated, I did some research and found information regarding adrenal crisis, and I discovered that only 56% of adrenal crisis patients experience abnormal sodium and potassium lab results while in crisis, and a blood test alone should NOT be used as a basis to disregard the possibility of adrenal crisis. I am appalled that the ER doctor was so poorly educated on my condition.
My condition worsened over the six or so hours I was sitting at home. I became weaker, more nauseated, I was beginning to have a hard time concentrating (mind fog), and the dull aching in my abdomen was becoming more noticable. I called my insurance company’s 24 hour nurse line. The nurse was very displeased when I told her what happened at the ER, and she told me that my condition would likely not improve without immediate medical treatment. She told me to go to another ER within an hour. I went to a different ER and was immediately given the life-saving treatment I needed. My blood pressure dropped to ~90/~60 and I was very clearly in an adrenal crisis. I was given IV fluids and the steroids I needed in order to help my body get back to normal. To my surprise, the nurse on staff said her husband has hypopituitarism as well due to a pituitary gland injury, so she knew exactly what to do in an adrenal crisis. The doctor on staff was very luckily the same one who had treated my previous adrenal crisis before, so he knew exactly what to do as well. I regretted not going to that ER first!
After my IV fluids were finished and I felt well enough that I thought I was safe to go home, they checked my blood pressure, which had started to return to normal levels, and agreed to release me. They provided all the paperwork they could that I can use as a reference the next time I experience a crisis like this. I am so grateful for the wonderful care I received there. I will be sure to go to that ER first if I have another crisis.
I went home, slept very well, and woke up feeling so much better. I am no longer experiencing the intense symptoms I was before. I am still a little tired and I know that I need to continue to rest for a while even though I feel well enough to move about. I’ll take a couple of days at least just to rest and make sure my body has fully recovered. I am so glad I was able to receive the care I needed before any permanent damage could be done.
I will be contacting the first ER’s VP and discussing this. I am being lenient because I do understand that my condition is rare, but I need to make sure the ER staff never do this to another Adrenal Crisis patient again. If I had not gone to the other ER for treatment, I might be even more sick right now, or worse.
This is another article related to my situation written by the MAGIC Foundation that you may find useful.
11 thoughts on “Dismissed and in Crisis: When an ER turns away patients with Adrenal Crisis, they risk lives.”
That sounds terrifying! I’m glad you’re over the worst of it for now but it sounds like an awful experience ❤
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It was pretty scary. I’m doing much better now! Thanks so much for your comment! 🙂
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Blessings and thank you for writing this. I am so glad you are okay and you got help. How many of us does this happen to?
I was diagnosed with Addison’s Disease at end stage adrenal failure in November 2018 after countless hospitalizations where no one recognized or treated me. I was in absolute hell for almost a year with unbelievable pain, dying. I couldn’t stand or sit up and needed a wheelchair to even get across the room. I struggled to breathe and survive.
I’m just starting to get used to the treatment and my condition. It’s horrifying how doctors have no clue about this. I had to find one in another state to save my life!
What are the proper tests for this? Please share because so far I still have no trustworthy local doctor and I could really use some help with the guesswork.
Thank you for caring.
Thank you for taking the time to share your experience. I’m sorry you have gone through so much over something so treatable!
I’m not sure exactly how many adrenal insufficient patients out there experience poorly educated doctors, but I hear new stories from other patients every single year.
Testing cortisol levels is so complicated, there really isn’t a quick way to know for sure how the adrenal glands are functioning. I have secondary adrenal insufficiency, which is a little different from your Addison’s Disease (also called Primary Adrenal Insufficiency). Addison’s is an autoimmune disease, and damage to the adrenal glands is what caused your adrenal failure. In my case, my pituitary gland does not function, so while my adrenal glands might function, they are not getting the signals from my endocrine system to produce the necessary hormones. The end result is the same for us both- Adrenal crisis.
There are blood tests to check cortisol levels in our body, but like I said, they are not very accurate. The best way to check levels is via a 24 hour urine sample, or a long, uncomfortable test called a “stimulation test”, where you are hooked up to an IV for hours and given chemicals which prompt your body to produce certain hormones, then blood is drawn to see how your body is functioning. I’m not sure if a stimulation test is really necessary for Primary AI patients, but that is what I had to do to check cortisol levels when I was being diagnosed as a child.
I hope I was able to answer some questions for you! I will be attending a teleconference on Adrenal insufficiency later this afternoon hosted by the Pituitary Network Association. If I learn anything new during that meeting, I will share it with you! 🙂
Best of luck to you. I really hope you can find a doctor who knows how to help.
Thank you so much for sharing your wisdom! I don’t know if my doctors actually know yet if it is my adrenals or pituitary. I need to do more testing.
I am beyond grateful to meet you & others with our condition. I met a few women on Instagram too who have our experience with adrenal insufficiency though everyone’s story seems to be a bit different with how or what their condition is. I don’t think I have those answers yet. My original diagnosing MD Naturopath was out of pocket and too expensive while I am recovering.
So I have to find one in my health insurance plan. Still looking.
Please keep me updated on what you learn! You are amazing and such a blessing to me & all of us! Thank you for all you do while you heal & manage your own challenges. Sending prayers, gratitude to you. ♥️🌻🧚🏼♀️🌈😇
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Thank you so much. ❤ I am so glad to be able to connect with you and others like us! Please let me know when you get your diagnosis. I hope you can get some real answers soon! 🙂
the link to the video is not working… is there another link? thanks
Aww, I’m really disappointed that they took that video down! I’m assuming you were referring to the link to the powerpoint video, right? I wish there was a way to find it again, but it seems to be lost forever.
Thank you for informing me of the broken link, anyway.
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