Sarah Howard (nee Tackett) has dedicated her career to supporting the T1D community ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Manager of Marketing at T1D Exchange.
Healthy user bias. The folks flowing T1D Exchange are likely much more likely to be more engaged with their diabetes management.
T1D Exchange has tracked A1cs from a more random population and has large data sets here which shows most T1Ds are WELL over 7% (the survey data I saw from 2017-2018 shows 33% of respondents had a 10% or greater A1c).
People on this exchange are more interested in t1 management than many, I suppose. Also, many of us are long-standing veteran, so we are both mature and have leaned a thing or two.
My last A1c was 5.9 last week. This is going to sound bad but having started omnipod 5 I didn’t like the overall high the automated kept me (150-180) so I postponed trying it until this A1C test. Love the pump and am trying to get a lower bg line. Love trying new things but I love a lower A1C. Just me, my choice.
When it was in the lower sixes my endocrinologist was not happy, since that indicated that there were too many lows. My current 7.7 reading is just perfect for me. And anything lower than 6 would be considered dangerous.
I guess 6.1 looks ok, however, it’s just proving, “To Many Lows”. Would like to be at 6.5. My biggest problem is because I’ve been a person with T1D for so long, I have no unused areas to inject. (Legs and unarms are not for me, anyway Dex G7 is to be used under arm when released.) So, most of the time I need to reset my Basels, because my (As you would guess) Glucose numbers go up and down all day and night.
5.5 T1 for 45 years. And I do not have the dangerous lows some of you talked about. It’s all about what you are willing to sacrifice to control diabetes or allow it to control you. I’ve tried both ways and I much prefer sacrificing rather than eating whatever I feel like and reaping the results.
This is obviously a well controlled group of long-term Type 1 diabetic. Strongly suggest T1D Exchange survey to distill best practices relative to glycemic control. Personally, I believe the collective experience would be inspirational and instructive to those struggling and perhaps demoralized by this insidious disease. Thanks to all of you sharing your T1 lives. You can be transformational in the process.
I agree and I’d like to see our “collective experience” shared with Endo’s who don’t believe that we are capable. I had an endo say it was (and I quote here cuz I will never ever forget) “It’s impossible for someone like you to have such good labs”. Fortunately I had a hard copy of my T-Connect reports to show lots of flatlining. Too many HCP’s cling to a low opinion of patients with diabetes – maybe to cover the butts in being less than effective in helping design a better mgt regimen.
Check this out: https://pubmed.ncbi.nlm.nih.gov/29735574/
“Exceptional glycemic control of T1DM with low rates of adverse events was reported by a community of children and adults who consume a VLCD.”
Average A1c was 5.67%. Many are sub 5.0% – follow TYPEONEGRIT who use principles from Dr. Richard Bernstein’s book Diabetes Solution. They achieve non diabetic blood sugars!
It seems that quite a few endos worry that having a low A1c may correlate with many hypos. although this is a valid concern, our time-in-range values can show whether this is true for any given person.
I was 6.0 on the nose. My time in range according to my Dexcom CGM is about 87%. Ergo the A1c is not due to excessive lows. I try my best to keep things under control.
I think it is good to keep an eye on our A1c and Time in Range. If a person has a good TIR percentage, but stays in the high end of the range, the A1c will be a high number. Let’s keep working on both statistics.
WOW! I am amazed at these results. I have been around 7 for 30 years and my endo says I’m doing great. I ask him how I’m doing compare to his other patients and he says I’m in the top 20%. According to the comments, I’d be close to the bottom 20%. Not sure what to make of it.
I was disappointed that it was 6.0. Even without CGM or pump, I had scored less than 6.0 a couple of times in past 10 years when I was exercising a lot more. I’ve been using Dexcom CGM for about a year. Ten CGM Hess months ago TIR was 88.5%, but it’s improved since then. MDs keep telling me I should not try to achieve normal bg levels below 6.0. Love my endo and nurse and dietitian but they keep bugging me to eat more carbs. It’s a power struggle. 🙂 CGM has helped me predict and prevent lows in real time. And I don’t over-correct by eating too much like I did in the past.
5.1 using Tslimx2 pump and Dexcom CGM6. I can’t use the Control IQ because I have many times when my Dexcom reading are substantially off/incorrect and doesn’t show the arrow showing what direction my blood sugar is going. Dexcom says the CGM 7 sensor catheter is shorter and this should help accuracy for thin diabetics.
These are weird results. Are we on this exchange so much more controlled than 99% of the type 1 diabetics? Naw something else is off.
Healthy user bias. The folks flowing T1D Exchange are likely much more likely to be more engaged with their diabetes management.
T1D Exchange has tracked A1cs from a more random population and has large data sets here which shows most T1Ds are WELL over 7% (the survey data I saw from 2017-2018 shows 33% of respondents had a 10% or greater A1c).
Data is here:
https://public.jaeb.org/datasets/diabetes
People on this exchange are more interested in t1 management than many, I suppose. Also, many of us are long-standing veteran, so we are both mature and have leaned a thing or two.
My last A1c was 5.9 last week. This is going to sound bad but having started omnipod 5 I didn’t like the overall high the automated kept me (150-180) so I postponed trying it until this A1C test. Love the pump and am trying to get a lower bg line. Love trying new things but I love a lower A1C. Just me, my choice.
Just went to my Endo. 5.8 A1c. I am using Tandem X2, Control IQ, Dexcom G6.
5.4 A1C using MDI and a CGM. Just switched from FIASP to Lyumjev (PBM forced)
TIR was above 90%. My endo has students sit in on appointments occasionally and one said that she was “stunned” by my time in range.
When it was in the lower sixes my endocrinologist was not happy, since that indicated that there were too many lows. My current 7.7 reading is just perfect for me. And anything lower than 6 would be considered dangerous.
I guess 6.1 looks ok, however, it’s just proving, “To Many Lows”. Would like to be at 6.5. My biggest problem is because I’ve been a person with T1D for so long, I have no unused areas to inject. (Legs and unarms are not for me, anyway Dex G7 is to be used under arm when released.) So, most of the time I need to reset my Basels, because my (As you would guess) Glucose numbers go up and down all day and night.
5.5 T1 for 45 years. And I do not have the dangerous lows some of you talked about. It’s all about what you are willing to sacrifice to control diabetes or allow it to control you. I’ve tried both ways and I much prefer sacrificing rather than eating whatever I feel like and reaping the results.
This is obviously a well controlled group of long-term Type 1 diabetic. Strongly suggest T1D Exchange survey to distill best practices relative to glycemic control. Personally, I believe the collective experience would be inspirational and instructive to those struggling and perhaps demoralized by this insidious disease. Thanks to all of you sharing your T1 lives. You can be transformational in the process.
I agree and I’d like to see our “collective experience” shared with Endo’s who don’t believe that we are capable. I had an endo say it was (and I quote here cuz I will never ever forget) “It’s impossible for someone like you to have such good labs”. Fortunately I had a hard copy of my T-Connect reports to show lots of flatlining. Too many HCP’s cling to a low opinion of patients with diabetes – maybe to cover the butts in being less than effective in helping design a better mgt regimen.
Check this out:
https://pubmed.ncbi.nlm.nih.gov/29735574/
“Exceptional glycemic control of T1DM with low rates of adverse events was reported by a community of children and adults who consume a VLCD.”
Average A1c was 5.67%. Many are sub 5.0% – follow TYPEONEGRIT who use principles from Dr. Richard Bernstein’s book Diabetes Solution. They achieve non diabetic blood sugars!
It seems that quite a few endos worry that having a low A1c may correlate with many hypos. although this is a valid concern, our time-in-range values can show whether this is true for any given person.
I was 6.0 on the nose. My time in range according to my Dexcom CGM is about 87%. Ergo the A1c is not due to excessive lows. I try my best to keep things under control.
Tandem X2 w Dex 6 and almost No Hypos, TIR 90%+ ,it’s like a Cure
True, my TIR varies from 85-95% except when changing my infusion set. I’m still getting use to it & often have crimped cannula problems. Tandem pump.
While I appreciate A1c is still a useful #, I think a much better measure is TIR, though it almost requires a CGM which many people don’t have.
TIR is great but doesn’t show how sensitive diabetics struggle with blood sugar fluctuations!
I think it is good to keep an eye on our A1c and Time in Range. If a person has a good TIR percentage, but stays in the high end of the range, the A1c will be a high number. Let’s keep working on both statistics.
WOW! I am amazed at these results. I have been around 7 for 30 years and my endo says I’m doing great. I ask him how I’m doing compare to his other patients and he says I’m in the top 20%. According to the comments, I’d be close to the bottom 20%. Not sure what to make of it.
My a1c only shows that I take insulin and try to control my bgs. It is in no other way an indicator of my blood sugars!
I was disappointed that it was 6.0. Even without CGM or pump, I had scored less than 6.0 a couple of times in past 10 years when I was exercising a lot more. I’ve been using Dexcom CGM for about a year. Ten CGM Hess months ago TIR was 88.5%, but it’s improved since then. MDs keep telling me I should not try to achieve normal bg levels below 6.0. Love my endo and nurse and dietitian but they keep bugging me to eat more carbs. It’s a power struggle. 🙂 CGM has helped me predict and prevent lows in real time. And I don’t over-correct by eating too much like I did in the past.
6.4 from 7.2 after switching to Tandem Control-IQ
This was my best A1C ever! Thanks to the automotive Tandem XL tslim
Typo..lol
Control IQ Closed loop
5.1 using Tslimx2 pump and Dexcom CGM6. I can’t use the Control IQ because I have many times when my Dexcom reading are substantially off/incorrect and doesn’t show the arrow showing what direction my blood sugar is going. Dexcom says the CGM 7 sensor catheter is shorter and this should help accuracy for thin diabetics.
6.8 up from 6.7. Stress and lack of exercise has a major contributor to the rise.