I recently had my six month endo appointment. At the appointment, I mentioned how my cortisol pump rates just felt “off.” As my life continues to stabilize, I told my endo that I probably could cut back on my steroid dose a bit and still be fine. I also explained to him that I was planning on rerunning an experiment on myself in regards to fasting blood glucose levels and steroid rates.
My endo’s face immediately lit up with joy as he asked me, “Would you like a new toy?!”
The answer to that was an emphatic yes. He darted out of the room to return with a lovely box containing a CGM, also known as a constant glucose monitor.
The Original Experiment: January 2018
On January 30th, 2018 I wrote a simple question: “Are my morning cortisol levels too high, causing issues?”
Although I did not have access to cortisol blood draws, I knew that blood glucose can indirectly hint at cortisol levels. I also knew that my fasting blood glucose was historically much lower than what I was reading now. For two weeks, I tested my fasting blood glucose as I carefully cut back 0.5 mg of solu-cortef every couple of days. I documented how I was able to cut my fasting blood glucose by about 10 mg / dL by weaning down 2.375 mg of solu-cortef in my pump. I was excited with both the improved numbers AND with that I was feeling better.
The Follow Up: October 2018
I firmly believe that your body will tell you the amount of cortisol it requires, you just have to learn to listen to the signs. A few months later, in October of 2018, I had a sneaky suspicion that my rates were potentially too high again. I ran another two week long blood glucose experiment, shaving off an additional 0.625 mg of solu-cortef from my daily totals. Once my fasting blood glucose was regularly in the high 80’s, I deemed the experiment a success.
I share these pictures to show that I approach the management of my Addison’s Disease with a very analytical eye. Proper management of this disease takes work in order to be successful.
The New Experiment: September 2019
The best patient / doctor relationships are ones built off of mutual trust and understanding. The physician brings years of education and training. The patient brings their own personal experiences and the insight that comes with actually living with the disease. Both voices are needed in order to receive the optimal care.
After several appointments with this particular endo, I am excited to acknowledge that we are falling into our own unique routine of trust. (Note: I do not give out doctor recommendations. Contact NADF or ADSG for their lists of recommended doctors.)
My endo knows that I am an engineer that thinks in terms of numbers and data and trends over time. I told him how I felt like my cortisol rates might be a tad bit too high again. The first thing he did was tell me that my overall daily amount falls well within “normal” range, but if I would like to cut back he also supports that. Since access to cortisol blood draws are both expensive and inconvenient, I would conduct another fasting blood glucose experiment by pricking my finger every morning upon waking.
My Own CGM
This was the moment his face lit up. He had a crazy idea that would help me collect even more data for my experiment. He went and fetched what he referred to as my new toy.
I knew the minute he asked if I was willing to have this “toy” that it would be a constant glucose monitor, or a CGM. Oh how technology has improved since I was hooked up to my first CGM back in 2005! There are no tubes and one sensor lasts for fourteen days. While it does come with a separate reader, I have found the smart phone app to be more convenient. All I have to do is hold my phone (equipped with NFC) next to the sensor and I have a new reading!
It might seem counter intuitive to use technology for diabetes to manage my Addison’s Disease. However if you stop and think about it, it’s really not. Too much cortisol, and your blood sugar levels tend to remain high. Too little cortisol, and your blood sugar levels tend to remain low. This is not an immediate response nor is it a direct correlation.
I know that I am stating the obvious, but it is also important to remember that blood sugar levels are also affected by the food you eat. Both my endo and I are more curious about what my blood glucose levels are doing overnight and in the early hours of the morning when I am both asleep and fasting. This CGM will provide us with that valuable data.
Additionally, it is important to remember the steps for data analysis. When I teach others how to properly analyze data, I emphasize it must be broken down into four distinct phases:
- Collect the data.
- Process the data.
- Analyze the data.
- React to the data.
This is phase one. We are only collecting the data at this moment. There will be no changes to my medicine during this phase. We are just observing, just listening, just recording. Too many people get themselves into trouble because they combine steps one and four without taking the time to think through the processing and analyzing.
I am not sure what insight this data from the CGM will provide. But I do know it will help me manage my Addison’s Disease on the cortisol pump. I am incredibly excited to have access to it. May it empower me to remain Clearly Alive.