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What We Learned from the Online Community This Month
We learn something new every day from the T1D Exchange Online Community’s Question of the Day responses. Here’s what we learned from the 3 most popular questions of October 2021:
What was your most recent A1c?
Our most popular Question of the Day in October is a question that we ask every few months to see if there have been any shifts in the A1cs reported by our Online Community through the different seasons of the year and as the Online Community grows.
The responses to this question were similar to when we asked this question in July, with more than half of the people who answered this question reporting an A1c in the 6’s. Since January, we’ve seen an increase in the percentage of respondents who had A1cs in the 5.0-5.9 range (4% increase) and in the 6.0-6.9 range (5% increase). We also saw a 7% decrease in the percentage of respondents selecting A1cs in the 7.0-7.9 range.
Here are some of the comments with the highest engagement from the community:
- “6.3, a number way too low from my goal of 7.0. For younger folks, this may not be a good recommendation. But for older folks, other considerations may dominate. The realities of “dead in bed,” severe hypoglycemia, increased incidents of dementia may rear their ugly heads.”
- “Mine was 6.0 and it is usually around this range. My “time in range” for BG is usually 75%.”
- “Mine is 5.7. Endo not happy. Lows make up 10% of my collected BGs. He wants them at 4%. So, he is slowly lowering my basal rate. And I have to raise my after dinner extra Bolus when I eat out. At home I am very disciplined. Not so much when I eat out.”
- “I’m the same re: home vs. eating out. I’m finding I’m NOT great at estimating carbs when I don’t have labels or cook it myself”
How would you best describe the daily burden of T1D? Please select 3 of the options below and share your own in the comments.
The answers to this Question of the Day really showed the resilience of people with T1D, and the positivity of our particular community. This question also received the most comments of any other questions this month, and many of them really summed up life with T1D in some inspiring ways.
Here are some descriptions that our community members shared:
- “Been injecting/infusing for so long, 50 years plus, it is my norm. It is a nuisance but better than the alternative of being in a box.”
- “The 3 C’s: constant, challenging and complex best describe for me what the daily burden of T1D success is all about. I chose these over their synonyms because I’m optimistic and want to stay away from terms that connote failure because in spite of the constant, challenging and complex nature of T1D, we can do this, we are doing this, we are learning daily the nuance and variables of our T1D management and striving towards our success. Perfection does not exist; stay positive, learn, move forward, REPEAT.”
- “I no longer consider it to be a daily burden. After living with it in my body for almost 60 years it is what it is – a complex 24/7 self-care duty. I do what I need to do to experience all the beauty and wonder that a satisfying life has to offer. And I give thanks every day for the gift of life.”
- “My husband has nailed this. He says diabetes is the math problem that never ends!”
- “I don’t consider T1D a burden. It’s simply a medical condition that my genes set me up for. The constant management of it isn’t a burden, either. What other chronic condition can be managed so closely? The ability to manage it at all is a gift that has prolonged my life, and the technology to facilitate that management has been steadily improving. But I also recognize that not everyone with T1D has access to that technology, and that needs to change!”
If you use time in range reports, what percentage of time did you spend in range during the past 7 days?
The third most answered Question of the Day this month was asked to get a better understanding of how many people are using the time in range metric, and to get a better idea of how we can dive deeper in future questions on this topic. In the past, we’ve asked many times about A1c because it is a pretty universal measurement for people with T1D, but time in range is only readily available to people using devices and “in range” does not necessarily mean the same glucose levels to everyone.
On many devices, the limits of what glucose levels are “in range” are determined by the user and can be changed based on a person’s goals. The current recommendations for the “in range” levels are between 70 mg/dL and 180 mg/dL, however we know that T1D is such a highly individualized condition, and each person’s goals may vary based on where they are in their journey with T1D. For that reason, we asked this question to try to gauge how successful people are at meeting their goals, even though their goals may vary.
Here are some comments that resonated with the community:
- “This question greatly depends on range settings.”
- “I use time in range but it is time in my chosen range not that dictated by convention that allows an A1C of 7.9% to be “in range”. I could spend 100% of my time at 170 and be considered in range. There is a big disconnect between in range numbers and recommended A1C. Perhaps TIR will replace A1C once more people are able to get CGM access. For me 180 mg/dL feels awful.”
- “This question is easily skewed by what people have set as their “range”. While most recommend 70-180, I shoot currently shoot for 75-160, with the intent of lowering it to 140 over time. Recommend when asking this type question, that you specify what “range” is intended. The answers you’re getting are probably all over the place.”
- “Just went over this with my Endo. My answer really is for last 4 months. I answered 90% but he told me my lows are 10% and it has to be down to 4%. So he lowered my basal rate and told me my A1C of 5.7 is too low and it needs to be ideally 6.4%. I told him we can work on the lows but not at the expense of raising my A1C. I feel horrible when high and I’m not going there just so my average can be higher. Work on the problem at hand. Don’t create another one to solve this one.”
Thank you to every member of the T1D Exchange Online Community for sharing your experiences. If you are not already a member of our Online Community, join us by clicking the “Join” button in your upper right corner!