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We learn something new every day from the T1D Exchange Online Community’s Question of the Day responses. This month, it is particularly obvious that this community is an inspiring group!
Here’s what we learned from the 3 most popular questions of July 2021:
What was your most recent A1c?
Our most popular Question of the Day in July 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 as more people join and through different seasons of the year.
The distribution of responses to this question were very similar to when we asked this question in April and in January, with nearly half of the people who answered this question reporting an A1c in the 6’s. Like the responses from earlier this year, 1% reported an A1c below 5.0, and 1% reported an A1c above 9.0.
Here are some comments that resonated with the community:
- “Interesting numbers that truly show that as a group this is certainly an outlier group as the traditional average A1C for T1D is about 8.5. It does seem to indicate that the physician and medical community should continue to ask this group HOW BEST to achieve low and viable A1C and TIR numbers and how they are doing this. There is a very large group of patients out there who can learn and improve immeasurable from the knowledge and capabilities of this group.”
- “Taking shots & eating meals & exercising at same times helped me eliminate variables. But biggest help was reading Dr. Richard K. Bernstein’s books and reducing carbohydrates to minimal levels resulted in lower insulin doses and less risk of hypoglycemia. Plus yoga classes, weight training, and cardio exercise at least every other day.”
- “My endo no longer recommends an A1c as it does not correlate well with my TIR of 88% and avg glucose 132 which is much lower than my A1c of 6.9 suggests.”
- “My A1c has ranged from 5.8 – 6.6. I eat pretty much what I want, but try to always pre-bolus 15-60 minutes before eating. TIR is currently 88% while using Tandem CIQ about 70% of the time.”
If you are currently wearing a CGM, where on your body is your sensor placed right now?
Different brands of sensors are approved for use on different parts of the body, but this question showed the wide variety of body parts where people wear their sensors.
The comments on this question prompted a follow-up question a few days later, as some commenters indicated they got more accurate sensor readings when they place their sensors on other body parts. The distribution of responses was nearly identical for that follow up question, although fewer people reported that their abdomen was the most accurate sensor placement, and more people reported that the fronts and backs of their arms were the most accurate sensor placement for them.
Here’s what some community members shared works for them:
- “I wear mine on my chest. I move it from one side to the other. It doesn’t get in the way and I get great readings!!”
- “The comments suggest some CGM users are NOT following recommended sites advised…but are getting better results. These variations are very interesting to me, but for time being I’m following Dexcom 6 advice, and place each new sensor on different abdominal area.”
- “Left forearm, after wearing a CGM for 4 years and a pump for 15 you need to get creative with sites!”
- “Inner thighs last the best for me and give me the best readings. It also is not usually in the way for daily activities, playing with my children and I am able to sleep on either side or my stomach without compression lows.”
- “Currently on right arm. Usually use the abdomen, but will give it a break and use the arms for a couple months. I use the G6 and on my body I find the abdomen the most accurate.”
For how many years have you (or your loved one) been living with T1D so far?
The responses to this Question of the Day were incredibly inspiring. The community members who responded to this question have more than 14,370 years of combined T1D experience. An amazing 25% of community members who answered this question have been living with T1D for more than 50 years.
The comments on this question were full of people celebrating each other’s achievements, acknowledging how far T1D management has come over the past several decades, and newer members of the T1D community expressing how happy they were to see so many people thriving after so many years living with this disease.
Here are some of the comments with the highest engagement from the community:
- “67 years and counting. Use to have to boil my syringes and needles on the stove. Used strips to check my urine that told me what my blood sugar was 2 hours prior. We’ve come a LONG way baby.”
- “Diagnosed in Sept, 1945. Type 1 for 75 years. No serious complications.”
- “This is one of the more interesting statistics. Being a T1D, I almost always feel alone with this disease, and am unaware of other T1D’s out there. I thought I might be one of the longest living T1D’s with the disease for 44 years. Now I know that there are many who have lived much longer. Congratulations to all of the long timers. I hope to get to the top of the percentile.”
- “Amazing that 17% of us are in the over 50 group”
- “68 years here!”
- “59 long years.”
- “It’s nice to have the tools and insulin that have gotten better during my duration as well (36 years). I hope they continue to improve.”
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!
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What We Learned from the Online Community in July 2021
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