It has been a while since I have spoken about my experience using a CGM (Continuous Glucose Monitor). I was first given one by my doctor at the end of September, and now here we are in December! Although I did provide an update one week in, I have yet to mention it on my blog since. Well, dear Clearly Alive Family, I am ready to provide another update. I am ready to share my conclusions from the CGM.
I consider this experiment a success and I am very thankful I did it. But, I will also say that this did not produce the results that I was expecting.
When conducting a scientific experiment, you always start with an initial hypothesis. According to Google’s dictionary, a hypothesis is “a supposition or proposed explanation made on the basis of limited evidence as a starting point for further investigation.”
“Are my morning cortisol rates too high?”
Although I don’t mention it much on this blog, I have been struggling with my mornings again. Now this is nowhere close to the morning struggles while I was on just oral cortisol replacement. I am NOT waking up having seizures or unable to move. This was different. I was just… dragging. I considered myself functional around 10:00AM, but my best hours were typically from 4:00PM to midnight. Coincidentally, this is also when my cortisol pump rates dip the lowest.
Now it is difficult sometimes to distinguish between too much cortisol and too little cortisol. I have found myself in the position before where I was on too much. I listened to my body, and weaned myself down from that point. As my life continues to stabilize and fall into a peaceful routine, I wondered if I was possibly over supplementing again.
There is a known correlation between cortisol levels and blood glucose levels. Typically, high cortisol correlates with high blood glucose and low cortisol correlates with low blood glucose. Therefore, if my fasting blood sugar showed high on my CGM I was going to cut back my dose, with my doctor’s support.
Although, I realized the implications of the data I collected within the first month, I wanted to verify it. This is why I remained silent on my blog. I was actually surprised by what the CGM revealed.
My morning cortisol basal rates were too low.
This was not the news I was expecting. I went in with a strong inclination that I had too much cortisol in the morning, and yet the CGM told a different story. With the support of my doctor, I adjusted my dose based off of this information.
Below are some of the things I noticed that led me to my conclusion.
1. I had good fasting rates.
I did not have high fasting blood glucose levels. In fact, the CGM regularly yelled at me telling me that my levels were too low. Now my doctor did warn me about not trusting the overnight values reported by the CGM. He said the Freestyle is known for being wildly inaccurate for lower glucose readings. I am thankful that he warned me, especially after seeing some of the numbers.
Pretty much every night, my CGM would claim my blood glucose dropped to ridiculously low levels. In the morning, I would sanity check with an actual finger stick. My fasting blood sugar was perfectly in range. This data allowed me to confidently state that my morning cortisol levels were not too high.
2. My blood glucose did not rise after breakfast.
This was unexpected. I started noticing in the mornings that it did not matter what I ate, my blood glucose did not rise. This became more apparent when I looked at trends over multiple days. The image below shows a two week trend. From just looking at these values, you would never believe that I was eating a carb intensive breakfast every morning around 7:30AM.
I was curious if this was influenced by what I ate. So I decided to run another small experiment. I had cheese ravioli one night for dinner. The next morning, I ate leftover cheese ravioli for my breakfast. It was the exact same food and I charted my blood glucose response.
This was the same food, yet my blood glucose only responded appropriately for dinner. This hinted at another problem with my cortisol levels being too low.
3. 10AM second breakfast was my body telling me that my blood sugar was low.
It had become my routine to eat a “second breakfast” every morning around 10AM because it made me feel better. These numbers backed it up.
I believe that your body tells you exactly what it needs, you just have to learn to listen to it. For months, I had been eating first breakfast around 7:30AM, second breakfast at 10AM, lunch around 1:00PM, small snack at 4:00PM, and then dinner around 7:30PM. It wasn’t until I saw the data from the CGM that I realized my body needed second breakfast at 10AM in order to keep my blood sugar in an acceptable range.
4. Afternoons were easier because my blood sugar was more stable.
This deserves to be filed in the “unexpected conclusions” category. Going into this experiment, I knew that my afternoons and evenings were much better than my mornings. I also knew that was also when my cortisol rates on my pump were the lowest. Therefore, I assumed that lower cortisol levels would correlate to me feeling better.
The CGM proved that wrong. My afternoons and evenings were not better because my cortisol was lower. My afternoons and evenings were better because my cortisol coverage was appropriate. The proper cortisol levels allowed my blood sugar to remain stable, which left me feeling better.
Cortisol Blood Glucose Relationship
The conclusions I was able to glean from this experiment still fascinate me. We already know that cortisol is the stress hormone. This does not mean that cortisol causes stress. Rather cortisol helps your body respond appropriately to stress.
Think of cortisol like a buffer. With appropriate cortisol levels, your body behaves as it should with respect to blood sugar, blood pressure, sleep cycles, emotional stability, and many other things.
Low Cortisol Levels
If your body does not have adequate cortisol coverage, you will be unable to maintain proper glucose levels. This is why I was misdiagnosed as hypoglycemic for so long. There IS a cortisol component to blood sugar levels.
When you are slipping towards an Addison’s Crisis, your blood sugar will potentially drop. Your body is unable to stabilize itself as different systems begin to shut down.
For example, before I crashed in the Nightmare, I consumed about 80g of carbs (I had a double serving of salty grits). And yet, my blood sugar did not get above 80. If your blood sugar is unable to rise after a meal, there is a potential that you do not have enough cortisol coverage.
High Cortisol Levels
There is a common belief that cortisol automatically raises your blood sugar level. This is inaccurate. Excessive cortisol that surpasses your current need will make your blood sugar more difficult to keep in check, but it does not automatically raise blood sugar levels.
I tested this out on myself. Remember when I attempted a root canal procedure and I crashed before even seeing the doctor? Yeah, well, multiple dental professionals still informed me that I required a root canal. Drat. I decided to not be conservative with cortisol coverage, given my history. Before we began the root canal procedure, I had a 100 mg solu-cortef injection.
The root canal went fine (minus the fact that laughing gas did NOTHING for me), and afterwards I stopped for a smoothie. This smoothie SPIKED my blood sugar. My blood sugar did not rise from the shot. It increased after I had the shot AND food.
Cortisol does not necessarily raise the blood sugar. It enables your body to raise it for you.
Conclusions from the CGM
Like resting heart rate and blood pressure, blood glucose can be another tool to help you manage your adrenal insufficiency. But it is important that you learn YOUR signs and symptoms for YOUR body. For example, if I have a wide swing (up or down 30 points in an hour), I feel sick. When my blood sugar drops below 70, I feel exhausted. At the start of the levels dropping, I feel hungry.
When I first received my CGM, I thought it might be an additional tool that I would wear constantly similar to my Garmin smart watch. However, at $75 a month, I think this will be a tool I only bring out when I am considering adjusting my rates. The conclusions and insights I gained from it were amazing, but I do not need to constantly be monitoring my blood glucose.
That being said, if you are on the cortisol pump and do not feel like you are optimally managed, ask for a CGM. Perhaps your data will empower you to draw similar conclusions. I used the information to bump up my morning rates slightly. I increased my total cortisol dose by 2 mg / day, which still puts me at an acceptable range for total daily dose.
I am already feeling better and am very thankful that such a small tweak could unlock much better days.
I am not a doctor. I am, however, a licensed professional engineer trained in data analysis that spends the majority of the day looking for trends in data and drawing conclusions.
All of the conclusions here are based off of my own personal experience. I do believe in the validity of this data and that what I wrote will help our community. But I would like to emphasize again that I am not a doctor and every individual is incredibly unique.
It is important for you to work with your own medical team in order to receive the best care.
May you always remain Clearly Alive.