Why It’s Dangerous When Medical Professionals Rely on Outdated Information

One of the things I’ve learned over the past few years is that there’s an awful lot of emotions involved in chronic illness. There’s the grief in losing your health. Anger at your body for betraying you. Sadness that your entire experience is changing and not always in a good way.

One of the constants I’ve come to find is frustration. Not just that I’m too tired to clean the house, or that six injections a day are hard to keep up with.

No.

Frustration at medical “professionals” who hold our lives in their hands.

There is constantly updated evidence for what to look for with adrenal insufficiency, both in initial diagnosis and crisis prevention.

However, I have found that doctors and EMTs do not stay updated on current research. In my experience, treatment, diagnosis and prevention are being based on research from the 1970s; research that is four decades old is being used to determine how to manage this disease, despite how inadequate it has been proven time and time again.

Recently, in the adrenal insufficiency community, I have heard of at least two more deaths due to preventable adrenal crisis.

Outdated information is still driving choices made in the back of an ambulance, in the emergency room and in the ICU. This has been deadly on many occasions.

Too often, patients are denied lifesaving steroids because first responders fail to recognize the urgency. For example, I’ve heard stories from real patients whose blood pressure wasn’t low right before an adrenal crisis but was actually high instead. Unfortunately, emergency medical personnel are so hung up on looking for low pressure, they might not realize that other symptoms can be present as well.

These symptoms include, but are not limited to:

Low sodium.

High potassium.

Intense fatigue.

Mental deficits.

Profound weakness.

Elevated heart rate.

Low or high blood pressure.

Vomiting.

Diarrhea.

Failure to recognize this as only one of many symptoms is dangerous. If a patient has three or more symptoms from the accepted list, they are at risk of crisis and in need of immediate intervention. And like I said, this ignorance has caused many deaths already.

It’s time for more awareness, more understanding, more funding, more research, and time for doctors to be proactive in reading research that already exists.

That is perhaps what angers me most — the research that already exists. It is too often ignored. Maybe doctors have too heavy a patient load, but maybe they’re ignorant or lazy, too.

I heard today that a doctor claimed Addison’s disease is mental and can only be treated by a mental health professional.

And this is why people with adrenal insufficiency are afraid to go to the ER; We are afraid we may never go home.