ICYMI: A Story about Cortisol

April of 2016 I recorded a video talking about my journey with Adrenal Insufficiency. I have decided to re-release it to YouTube.

I was diagnosed with Adrenal Insufficiency in 2005 and immediately started on Cortef. This caused me to gain thirty pounds and put me at a healthy weight. In 2007, insurance forced me onto the generic Qualitest. My medicine no longer appeared to be working, so my endocrinologist just increased my overall dose. This caused me to gain another thirty pounds. In 2008, I moved to a new state and saw a new endocrinologist.

Undiagosed. First diagnosed. Well managed on Cortef. More weight gain on Qualitest.

I was also determined to try a new plan. We first tried a single dose of 5mg of prednisone given in the morning. That did not work well.

My body did not respond well to a once daily dose of prednisone.

My endocrinologist then suggested a single dose of 0.5 mg of dexamethasone before bed. While I loved how dexamethasone gave me functioning mornings, I was blacking out every afternoon. This was especially terrifying when I was attempting to weld in some of my engineering courses and I barely had the strength to stand.

During that Christmas break, I informed my endocrinologist that I could not survive on just dexamethasone. He threatened to put me back on just hydrocortisone. I adamantly refused, requesting that we combine the dexamethasone and the hydrocortisone so that I could have the best of both worlds. He told me no.

"Well, Why Not?"

I sat in that doctor's office with my mom and argued with my endocrinologist. "It's just not done like that" was not a valid reason to me. Logically, it made sense to mix the different types of steroids. I am very thankful he listened to my reasoning and was willing to try something that was not in the textbooks.

It started out in 2009 with just a single dose of dex at night and a single dose of HC during the day.

When I first started on this treatment regiment in 2009, I was only taking a "bump dose" of HC in the afternoon. By 2012, I was taking HC three times a day and dex nightly. This greatly improved my quality of life and helped enable me to earn my engineering degree.

More Than the Milligrams!

Please run away from any doctor that focuses just on the totally amount of cortisol you are taking. It is much more complicated than that. The timing of your medicine plays a crucial role in your overall quality of life. Treatment for adrenal insufficiency involves a consideration of both the dose and the distribution of medicine.

It is possible to be both over and under medicated at the same time.

It is possible for you to be both over medicated and under medicated at the same time. With too much medicine, I experience the moon face, inexplicable anger, an inappropriately large appetite, and insomnia. With too little medicine, I battle against irrational despair, a different type of insomnia, incredible dizziness, and lethargy. When I was on just dexamethasone or just prednisone, I would cycle through these symptoms in the same day.

This was unpleasant.

It is also worth noting that if you have Adrenal Insufficiency, you should never be waking up vomiting, sweating, shaking, or with very low blood glucose. This is a sign that you are starving your body of cortisol overnight and is incredibly dangerous.

The goal is to have cortisol levels peak around 8:30am, and then gradually dip down to the lowest point around midnight. You can more closely match this with mixing different types of steroids taken throughout the day, but it used to be very hard to visualize what you were actually doing. Until...

The Fruit of a Hack-a-Thon

In 2015, I locked three of my engineering friends in a room with a few laptops and a whiteboard for several hours. At the end of the night, we had produced my Theoretical Steroid Curve Plotter. I had been planning it for over two years and already had another engineering friend do a proof of concept in MATLAB. It felt so nice to turn that tool live.

I am forever grateful to M. Galland, J. Pawula, W. Toth, and A. Vera (not pictured).

Benefits of the Cortisol Pump

Constant cortisol coverage made a huge difference in my life.