I am more than a number.

People with diabetes live by numbers. But there is no number more highly regarded, than the A1C number. Measured through a blood test, hemoglobin A1C, provides information about average blood sugar levels over the past three months.

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When I go to my endo appointments every 3 months, the only thing my mind is focused on is getting my A1C results. That’s it. I am thankful to have technology today that allows for almost immediate results because back in the day I would have to check our mailbox every day the following week, for that letter with the highly anticipated results.

Usually it is about two or three days before my appointment that I realize I even have an appointment. It is at this time that my stomach drops, my heart starts pounding a little faster and my brain starts to go over every time I forgot a bolus, or let a high blood sugar linger for just a little too long. What ensues is two or three days of diligence, and perfect diabetes management. Unfortunately I, like many others, have learned the hard way that you cannot improve three months of lack-luster management in three days; even though we incessantly try every time.

That 2 digit, sometimes 3 digit (throwback to sophomore year of college) number, is so important to people with diabetes. In addition to being the only thing we think about leading up to an appointment, it can also set the tone for the entire appointment, which is actually quite counter productive. It doesn’t stop there. A1C will continue to float around in our heads for the rest of the day or more, after the appointment. I love seeing diabuddies triumphantly post the results of an improved A1C on social media as much as the next person, but I also know what those long car rides home feel like after not receiving the results you (unrealistically) hoped for. It’s usually the first thing my family members or even other diabetics are itching to know, whether they verbalize it or not. 

 I mean think about it, even when you go to the eye doctor or primary care doctor, it’s the first thing they ask. If it is higher than a 6.0, I feel the need to quickly justify it, with, “Oh, but I’m very active.” or “Oh, but it’s lower than last time” as I try to avoid their judgmental gaze or tone in their voice. But it is not their fault, A1C is the only way that these healthcare professionals have been trained on how to assess someone’s blood glucose control. 

It is like having tunnel vision for this number. But why? Why do we focus on it so much? Why  do I absorb nothing else from the appointment, besides that number? It’s because we have been taught that the A1C is a grade. We’ve been taught that A1C is a permanent part of our diabetic identity. We think of it as not only a judgement of our diabetes management for the past three months, but also a judgement of ourselves. We, as people with diabetes, take this number very personal. 

Whether intentional or not, I have been conditioned to think that an A1C in the 6’s is an A+ and anything above 7.5 is failing. If that was the case, I would have failed out of “controlling my diabetes” when my A1C was 10.2 during my sophomore year of college. The amount of stigma and guilt there is around a high A1C is very burdensome and leaves the person with diabetes feeling helpless, rather than motivated to make necessary adjustments.

But the thing is, I didn’t need an A1C to tell me that I had poor diabetes management. I looked at other factors to gauge how well I was doing. I was tired all the time, sleeping in class, sick a lot, I was not testing my blood sugar, my time in range was minimal and overall I just felt burnt out. The A1C was a reflection of all of this; “all of this” was not a reflection of the A1C.  

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Even the way we market or educate ourselves on A1C can have alternate meanings. A1C is just a snapshot, not the full picture.

I think that it is important to acknowledge that A1C carries a lot of weight in looking at glucose control, but it doesn’t hold all of it. Because it can be very misleading, and it is necessary to look at other factors and other outcomes. A lower or “good” A1C may actually indicate severe low blood sugars over night. Sometimes a higher or “bad” A1C means you are mostly in control, except for post meal spikes. Or it could even mean that you’re on the swim team and you practice twice a day with your pump off so naturally, you are constantly trying to catch up on your basal. Even if you are diligent, there just may not be a lot of pay off. We so strongly correlate low A1Cs with the amount of effort a person with diabetes is putting forth forgetting the fact that A1C is not, and should not be, the only outcome measure for diabetes management. 

I mean even in schools we tend to follow a similar philosophy. It’s about being well-rounded. My parents excused C’s because I was also on the field hockey team, in band, a leader in the student council and on the science Olympiad team. Or if they knew I was trying hard, I was not shamed for the grade I received. We looked at other outcomes, to base action off of, to help improve my academics. There was so much more to high school than just my grades, just like there is so much more to diabetes than a number.

Luckily with the support of my mom and my diabetes care team I have broken this cycle of toxic thoughts around A1C. And thank goodness for that. We focused on specific times I was not in range. We focused on my activity level, my food intake, overnight trends, and most importantly how was I feeling? Was I balancing being a normal young adult with focus on diabetes management? We looked at the smaller adjustments to be made, that would have an impact on bringing my A1C down to where it needed to be. Having good control doesn’t necessarily mean a good A1C, but also good mental health, physically feeling well and not being bogged down by every aspect of diabetes.

It is no doubt that A1C is the most known way to judge the control of your diabetes. And even though it is one small part of the entire management picture, the reality is, is that currently A1C is the only UNBIASED way to measure diabetes management. It’s the only quality measure used to approve diabetes drug therapies. But it’s time to change that.

Next week there is a FDA workshop between patient groups, industry and the Center for Drug Evaluation and Research (CDER) on Outcome measures beyond A1C. I have been lucky to be able to help market and prepare for this event through my Students with Diabetes internship this summer. And we need you to be involved too!

First, help us share the patient perspective with the FDA. Create a short video. Here’s an example. This is a unique opportunity to bring YOUR voice directly to a FDA meeting.

#DOCasksFDA videos (3)

Submit videos here.

Then, register to attend the event in person, or via webcast, here.

fda event

Also check out what people are saying in the diabetes blog-sphere (post from Diabetes Mine), this one (from It’s all about Balance) and this one from Manny at Tudiabetes. 

And lastly, spread the word on social media with the hastags #DOCasksFDA and #beyondA1c

We are more than a number. We are more than our diabetes. And it’s about more than A1C.

AB

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