When to go to the ER & when to self-inject
The issue of when to go to the ER is confusing. New patients are unfamiliar with how much time they have to get meds, everyone is different so it’s hard to advise, and no one wants another patient to hesitate and put their lives at risk. Since crisis can be brought on quickly or as a result of doing too much over a period of time, knowing your own progression from early symptoms to crisis point is key.
But that takes time to recognize and learn. Self-management and good communication with your doctor are important to avoiding trips to the ER. So, here’s the unpopular part. The ER in this case may have had a crappy attitude, but it appears they did what they were supposed to. An adrenal crisis (short: AC), like any other diagnoses, has established parameters. A patient shows up and says, “I’m having an AC”. The doctors google it. Listed symptoms are low BP, volume depletion, etc. – and you don’t fit these parameters. So, the doctors won’t diagnose you with an adrenal crisis. They can’t. In order to say it is a crisis, you must fit the definition.
Presenting with high blood pressure (as some patients initially experience during an AC) makes things more difficult. Yes, we do have an emergency card with hypertension on it. But because it goes against what they will google, it needs supporting evidence. That’s where a letter filled out by your doctor with specific instructions is useful. Another thing is to use slightly different language. You may not fit the definition of “crisis” but you can be having an “emergency” and need your AI managed while you find the cause. They might find this easier to understand.
Now back to the progression of symptoms. I’ll use myself as an example. My doctor is 5 hours away. The local hospital and I had a few awkward encounters before I learned to manage at home. Not everyone can do this. Some people crash fast and must have ambulance and medical support. I know that if I am paying attention to symptom severity, I can updose or inject to pull myself out of it. Then I get some electrolytes. In one hour at home I can be resting miserably, minus the exhausting conversations and snide BS from the ER. If I can sit up and type and talk, I’m probably not that close to dying. I do have a husband to help. That makes a big difference.
Someone living alone wouldn’t want to be in danger with no back up. I journaled my symptoms for a long time. It helped me see the pattern.
Now I know, nausea, headache, body ache, temp swings = updose.
Face pain, can’t see, extreme weakness, breathing funny = inject.
BP below 100/60 or above 160/100 = inject.
Now these are my thresholds, everyone must figure out their own. I have discussed this with my doctor at length. I have his approval to self-manage. I know if I have a sudden shock, vomiting, fever, or the big D, it is time to go to the ER. But if I do need to, I am prepared.
Prepping your local hospital for future visits can help avoid long discussions and shoddy treatment in the ER. You can set up an appointment with the ER manager for a time when you aren’t in crisis.
Take literature to explain AI. Be pleasant and let them off the hook. Say something like “You may not be familiar with this condition, so I wanted to share these materials with you”. Explain you have other conditions that may make you present with contradictory symptoms, such as hypertension. High BP without steroids to modulate can lead to cardiac arrest. AI patients may need cortisol and fluid management for a variety of emergencies. Infection is the #1 cause of crisis.
Ask that the educational materials and copy of doctor’s letter be put in your file. Now, hopefully next time you show up you will get better treatment. It’s a good idea to make another file with all these materials so if you’re away from home or go to another hospital you have them ready.
Emergency and awareness products
- by Adrenal Insufficiency United (USA)
- by Addison’s Disease Self-Help Group (UK)