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  • Writer's pictureRyan Allen

Flawed healthcare, interpreting test results, CGM, etc.: an update on my patient experience

Though I had hoped to have a more concrete understanding of my blood sugar situation for this week’s post, the reality is that I’m still feeling the same confusion that was evident in my last post.

After some concerningly high blood glucose (sugar) and hemoglobin A1C test results (in the diabetic range), I quickly became curious to discover what could be the cause. While still unlikely, I suspected that type 1 diabetes was a reasonable possibility given the circumstances. The circumstances being that I am not a typical type 2 diabetes patient. As I alluded to a couple weeks ago, the most common pathology of type 2 diabetes results largely from a patient’s inactivity and poor dietary choices. While I’m of course not perfect, anyone who knows my habits knows that I don’t fit this description.

As it turns out, the tests for type 1 diabetes that I had previously mentioned came back, and none of them have suggested that I have this condition. It looks as though my level of insulin production is normal, and I do not have any self-reactive antibodies to suggest autoimmunity. All of this leaves my doctor to believe that I must in fact have type 2, and she is ready to start me on treatment based around that. However, she is admittedly just as shocked and confused as I am, which really only further increases my curiosity to figure out what is going on.

If this is (as it appears to be) just about the end of my healthcare provider’s assessment of my situation, I take issue with a couple aspects of the diagnosis. Both are primarily based on our hesitancy to believe that this is the typical mechanism of the disease.

The first is that I do not know for sure how my body is responding to insulin, or even how my blood sugar is behaving in general. A few static blood sugar and A1C measurements (albeit with A1C estimating average blood sugar over a timeline of 3 months) actually don’t tell me much at all. They can generally signal to me that I probably have an issue if they’re very high (which they are), but they only give me an idea of what my blood is like at a moment in time. What really matters is how my blood sugar fluctuates over time. For example, after a meal, am I getting a huge spike of blood sugar into an unhealthy range? Is my body storing glucose efficiently, or is my value remaining high for long periods of time?

A valuable tool to answer these questions would be a continuous glucose monitor (CGM), which is a small device that is constantly on your person taking blood sugar readings (often hooked up on your tricep) and connects to your phone. Think of static blood glucose readings like snapshots, and CGM data like a movie. Clearly, this would provide incredibly beneficial, useful information for me. Yet, in my most recent phone discussion with my doctor, she felt it was highly unlikely that it would be covered in my situation. I was very surprised, disappointed, and frustrated with this. After all, I had essentially just been diagnosed with diabetes, and many feel that non-diabetics should even be wearing CGMs as a preventive measure because of the value of what they can reveal (this will undoubtedly be discussed in future posts).

Another very helpful source of information would be an oral glucose tolerance test (OGTT), which is basically measuring your blood sugar response (over a 2-hour period) to consuming a sugary drink. After I inquired about this, my doctor also turned it down, suggesting that it would not change our method of treatment going forward.

So, while my first frustration is with my uncertainty that I even have type 2 diabetes, my second is that I have not received a sufficient explanation as to how I would have it. In this light, you can basically think of type 2 diabetes—that is, a high degree of insulin resistance—as a symptom, not the disease. How is it that I have become insulin resistant? While insulin resistance remains a complex issue of active research, I do not check any of the boxes for established risk factors. If I in fact have type 2 diabetes, I would like to figure out the underlying cause and address the root problem. In other words, I am unsatisfied with being told that I simply have common type 2 diabetes when that’s clearly not the case. It’s ironic that treatment for that would largely involve good habits like exercise and a healthy diet, which I already have. If I just continue to do these things, I have no reason to believe anything will change. The problem surely must reside elsewhere.

If there’s anything that the last couple weeks have exposed, it’s the flawed state of our current healthcare system. It’s pretty discouraging when I consider my healthcare provider to be one of the best currently around, and I am still finding myself so disappointed with the care I’ve received since this problem arose. I somewhat feel that my case has just been viewed as a typical one that requires an algorithmic, knee-jerk response: high blood sugar, still producing insulin, must be standard type 2 diabetes. Medicine should not be viewed this way. Each case should always be assessed independently, and the symptom does not always define the disease.

Fortunately, in my case I have been able to push my doctor to provide me with more than the basic explanation of what type 2 diabetes is, why I have it, etc. because (I’d like to think) I am a relatively informed, proactive patient. I can’t help but think about all the people who do not have the same luxury of knowledge available to them, and the subsequent amount of misdiagnosed cases where average, less medically knowledgeable patients are left with their true issues unresolved.

Although this post clearly cannot and does not suddenly fix our healthcare system, we can certainly find ways to work within it. The proactivity of a patient goes a long way. This example just goes to show the importance of educating yourself to the best of your ability with regards to your health, so that you are able to hold your physician accountable and assure the best quality of care despite the limitations.


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