What I Wish People Understood About Adrenal Insufficiency

I have adrenal insufficiency, Adrenal insufficiency is a disease where the adrenal glands (which are located above the kidneys) are unable to make cortisol. Both too much and too little cortisol can be harmful to our bodies.

Cortisol is a very important hormone, but it must be just the right amount… too much or too little is harmful. Most people are aware of the damaging effect of high cortisol – high cortisol can lead to a host of symptoms such as weight gain, high blood pressure, diabetes, excessive hair growth and many other symptoms. Few people, however, seem to be aware of the dangers of low cortisol. Low cortisol can lead to death, quite quickly at times. It’s important to realize that cortisol is not a bad hormone, it is a very important hormone that is needed for our bodies to function.

I had never heard of the dangers of low cortisol until I was diagnosed with adrenal insufficiency. It took a long time to me to be diagnosed with adrenal insufficiency – my symptoms began slowly with loss of appetite and dizziness. Soon, fainting, fatigue and nausea became a part of my daily life. Then I began to lose weight without even trying. By that point I had been worked up for a wide variety of illnesses from cardiac arrhythmias to cancer, but no knew what was wrong. Then, after a simple outpatient surgery I took a turn for the worse. I was unable to stand up without my vision blacking out, I couldn’t eat or drink; I was very ill. After being admitted to the hospital, a curious doctor decided to test my cortisol level. I was told it would likely come back normal, Adrenal insufficiency is rare and my doctor had never seen a case. Boy, were we both surprised by the results! With that one simple test he solved the puzzle, I had adrenal insufficiency. Had that doctor not checked my cortisol level that day I likely would have died. When our bodies are under stress from an injury, illness or surgery they produce extra cortisol to keep us alive to help keep our bodies functioning. My body couldn’t do that after my surgery, which led to my rapid decline and landed me in the hospital.

That day I learned that high cortisol may be bad, but low cortisol can be deadly. My friends and family didn’t experience this firsthand, and weren’t as easily convinced of this fact. When they learn of my weight loss prior to diagnosis the first thing out of their mouths is usually along the lines of “Wow, I need that!” or “Wish I had that.” Some have heard cortisol called a “stress” hormone and assume that it is bad, they comment that “it must be so nice to have no stress,” when in fact it is a hormone that allows us to survive stress. It can be incredibly difficult to hear these comments while struggling to live life to the fullest while managing a chronic illness.

While I can understand where they are coming from – I’d be lying if I said I wasn’t excited by the weight I lost before I was diagnosed – it’s still painful to hear. To get the cortisol my body needs I must take it as a medication, multiple times a day. Without it I will die. This medication cannot even come close to managing my cortisol levels as well as a healthy body would, meaning I have to walk a dangerous tightrope between over and under replacing the cortisol my body can no longer make. While I can try and explain this until I’m blue in the face, no one seems to truly understand how dangerous it is to live in a body that can’t produce cortisol.

Recently, I’ve begun to explain this with an analogy anyone can relate to. I ask them to think of cortisol as food, if you eat too much food all the time it will take a toll on your body and is not good for you; after years of doing this you would likely die from complications caused by your excessive food intake. Conversely, if you forego eating you will quickly die from starvation. This analogy has helped me greatly – food and the consequences of overeating and not eating is something that is readily understood by everyone.

Cortisol gets a bit of a bad rep from the press, but just because it can be bad doesn’t mean it’s also not good. Now when I hear comments about how lucky I am to have adrenal insufficiency, I don’t let it get to me, but instead remember that I knew nothing about the dangers of low cortisol before I was diagnosed and use it as an opportunity to educate one more person about this rare disease.