In Which My Daughter's A1C Is Not a Grade

Kittygirl had her quarterly visit at the endocrinologist office yesterday. She actually doesn't see a doctor, but rather a nurse practitioner within the practice with an endocrinology specialty. We had a personality clash with the doctor to whom we were initially assigned (purely because she was on call when Kittygirl was in the hospital), and a local friend recommended the nurse practitioner, whom we love.

Because I can't post a picture of Kittygirl, I'm sharing a picture of the book she was reading during the appointment. As you may remember from previous posts, I have been frustrated by the fact that, while she reads very well, she only chooses to read if a book catches her eye and most of those books are graphic novels. She picked up this little book at a Little Free Library box near her school (these are great, google them if you don't have them in your town) and literally refused to put it down from that point on. We had to pull it out of her hands so she could be weighed and talk to the nurses.

Anyway, based on my completely unscientific research consisting in the reading of blogs and Facebook posts, it seems as if a lot of adult T1Ds and parents of young T1Ds dread every endocrinologist visit. Many people feel judged by their endocrinologist if their blood sugar results aren't meeting the goals that their doctor has set.

This is a tragedy. Of course, it's best for a type 1 diabetic's A1C to be as low as possible without significant incidence of low blood sugar, and it's important for those using CGMs to continue to increase their time in range. However, it's never right for a medical practitioner to make patients or the parents of juvenile patients feel bad if they're not meeting these goals. The A1C and time and range are data points. If they're not where they should be, that's a call for the doctor and patient to work together to figure out how to change dosing, eating, activity, or whatever is necessary to move close to the goal.

The one case in which it might be permissible for the doctor to react negatively is the case of a patient who has stopped taking insulin regularly and is seriously putting their life at risk. In this case it could be permissible to attempt to "scare the patient straight." Even in this case, however, the subject should be approached with compassion and not with anger.

Despite consistently achieving an A1C that impresses our practitioner, I refuse to look at the A1C as a grade that says we're good diabetes students. The fact is, we started with a lot of advantages. We're able to afford the latest technology. We're intelligent and well-read and did a lot of our own research that has helped us manage Kittygirl's diabetes. We're not afraid to step out and make our own decisions about diabetes (with the blessing of our practitioner). Not everyone has had our experience.

Some people are struggling just to afford the basic insulin and blood sugar meter. They may  not even have a prescription that allows them to test their (or their child's) blood sugar often enough to understand blood sugar patterns and make adjustments. Or perhaps their doctor's protocol doesn't take into account the most recent research but it's the only doctor in their town and it's not within their resources to look elsewhere.

With the exception of people who are burnt out and truly not caring for themselves well, every adult with diabetes and every parent of a child with diabetes is doing their best with the resources they have. In this context, I believe that comparing A1Cs is counterproductive. Whether you're sharing your/your child's amazing low A1C to celebrate it or sharing your/your child's high A1C to commiserate, it doesn't actually do anyone any good.

Diabetes involves a lot of data. That data, including the A1C, is a useful tool to help us figure out our next steps. That might mean continue to do what you're doing, or it might mean you need to make some changes. Either way, sharing your/your child's A1C on Facebook isn't going to help you with that.