This is purely out of curiosity. What is the lowest HbA1c you ever heard of in a T1 who’s not honeymooning? From talks with my endo, A1Cs below 6% are rare, below 5% extremely rare (assuming that these 2 categories weren’t bought with tons of lows of course), and the average among T1s is ~8-9%. What were your experiences?
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One thing you have to keep in mind is that frequent posters to Tudiabetes are hardly typical diabetics. You might think from reading posts here that A1C’s under 6 are common in the wide world but that’s wrong because Tudiabetes posters are are a highly self-selective group.
Just quoting some stats from T1D Exchange registry quoted in https://diatribe.org/few-type-1s-meet-a1c-goals-despite-treatment-innovations
"#### A1C Goals
The majority of both youth and adults surveyed aren’t meeting A1C goals defined by the American Diabetes Association, and average A1C in the network has actually risen.
- 17% of youth have an A1C below 7.5%;
- 21% of adults have an A1C below 7%;
- Average A1C overall has risen from 7.8% in 2010-2012 to 8.4% in 2016-2018."
Taking the second number above and flipping it, 79% of adult T1’s have A1C’s above 7%.
I used to know how to do searches in T1D Exchange Registry like “what fraction of T1’s have A1c’s under 6.0” but am not sure how to do it anymore.
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When I was following Dr. Bernstein and eating 30 carbs daily my A1c was 4.6. Now I eat a low fat mostly plant diet and eat 275 carbs a day. My last A1c was 5.1. With both ways of eating I take almost the same amount of insulin. So 15 yrs of low a1c’s.
When I was in the 6’s, I still had too many complications with my hands including trigger fingers, locked fingers, and dupuytren’s. I also had a couple of frozen shoulders. I have been free of those things while remaining below 6, although I am watching a lump slowly form in an index finger. I also make it a point to stay in range as much as possible. My range is 60 to 160. I am seldom at 160 for more than a few minutes if at all.
If I could have been free of complications with a higher A1c I wouldn’t have worked so hard to stay under 6. To be neuropathy free is extremely important to me as I age.
Also, at one time I lost the ability, to know what my blood sugar was at all times just by how I felt. My ability to feel when my blood sugar has started dropping has returned which is so important to me. Of course having a CGM has eliminated that need, but I like knowing that I have repaired my ability to feel lows again. This is a recent improvement.
Dx 1959
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While clinicians and academic researchers like to use the A1c number to slice and dice the diabetic population, I don’t think it’s a measure that serves us well as it can mislead and harm us.
As people who live with diabetes, we should instead focus on reducing blood glucose variability and increasing our time in range. Attaining lower glucose variability and a high time in range leads to fewer hypers, hypos, and a better quality of life.
It’s high time we reject the A1c as a way that diabetics describe glycemia. With CGM technology becoming more prevalent, it’s easier for us to measure glucose variability (standard deviation, SD, and coefficient of variation, CV) and time in range. Leave the A1c number to the researchers and clinicians; that statistic is not our friend.
Having said that, I’ve read accounts of members here who have measured an A1c in the high 4% range. While I’ve never measured an A1c in the high 4% range, I’ve come close. I feel more pride, however, in the fact that I can regularly measure a high % time in range 65-130 mg/dL and a low SD and CV.
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I agree. You can be 240 half the time and 60 the other half and have an A1C of 6.8, but I guess it’s still better than nothing.
Not sure if accurate but misleading is better than nothing. I realize that CGM access is not available to all diabetics (it should be!), but for those who do have access, they should at least give it a trial.
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I find it annoying how few medical professionals actually know that there’s only a very loose correlation between average glucose and A1c. They cast such aspersions based on a fallacy.
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I started wearing a CGM in 2009 and soon noticed the disconnect between my CGM average glucose and the average glucose associated with my A1c number. My A1c floated a full 0.5% above what the CGM average predicted.
It bothered me that my A1c didn’t reflect my actual glycemia. A few years back, a naturopath diagnosed me with iron deficiency anemia. I soon discovered that diabetics with iron deficiency anemia found their A1c about 0.5% above their actual glucose experience. When I supplemented with heme iron, my A1c aligned with my average glucose as measured by my CGM.
This was important to me but wasn’t really important in the overall scheme of things. As people who live long-term with the A1c measurement often taken quarterly with comment made by the doctor at each visit, this number can turn into a nemesis.
From my individual perspective, the A1c is not an important measure of diabetes management. It bugs me that medicos seem to infer a level of precision that’s just not there. I think it’ll take another generation of doctors to put the A1c in it’s proper place.
Time in range and glucose variability are key; that’s where we should place our attention.
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I have been hovering at 6.1 but I’ve managed to be at 5.8 however I could not maintain it.
I also had frozen shoulders when I was in my 40s and I have duputrens in my hands and my feet.
I know it might seem like sugar control can cause it, really they are separate things that often appear together.
I have Viking blood, and I assume you do as well. I’m Irish and Welch. That’s where both type1 and duputrens are really common.
I participated in a genetic study in Nordic genetic diseases. From Sweden. However I submitted my blood here in California. They told me that I have the gene responsible for duputrens. Which causes a certain type of frozen shoulder and duputrens contracture and lederhosen disease. Since I have all 3 it’s not a surprise that I have the gene.
I also have all 3 gene mutations that they suspect for type 1 diabetes. They really don’t know yet which or a combination.
However even thought I always figured I was mostly Irish apparently I have 90 percent genetically similar to Norwegian.
Most Irish were about 30%.
So I’m just not sure if I was lied to, or if it’s happenstance.
Anyway the take was that these are comorbidities and not cause and effect.
At least that’s the current thinking. This study was completed in 2018
Do you have blue or green eyes? I was told that all people with duputrens have blue or green eye genes. If you have blue or green then you have 2 copies and are much more likely to express the disease.
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I am sorry to hear that you have those problems Timothy. I do share much of your ancestry and am aware of the link with dupuytren’s. I had my first needle aponeurotomy on my severely deformed hands 21 yrs ago. I flew to Florida so that I could have my hands worked on by the only hand surgeon in the US who knew how to do this treatment. Every single person in the waiting room had diabetes. That is why I see a strong connection between dupuytren’s and diabetes. It would be very hard to convince me otherwise. The surgeon told me that most of his patients had diabetes.
My father had the very beginnings of dupuytren’s when he died at 89. He had brown eyes and as a child I had brown eyes, although they are now hazel.
My older sister does not have diabetes, she is not hypothyroid, has never had dupuytren’s or even a frozen finger, she has never had carpel tunnel, or heart stents. She has had one frozen shoulder. She has green eyes.
I know for me, just like for Dr. Bernstein, who has also has had diabetes for many decades, a non diabetic A1c has been extremely important. We have been able to stop some complications and heal others.
That’s a lot you deal with.
My duputrens is not severe yet. I have contractures but they don’t effect function. However my feet hurt but I just put up with it, I gave up running but I still walk and hike. I have 4 siblings. I am the only one with type 1. I am the only one with green eyes however we all have dupertrens contracture.
Mine is the mildest of everyone. All 3 of my brothers have had surgery and my sister had injections of collengnase
It’s funny you mention your eyes changing.
I had hazel eyes as a kid green with brown center.
Now they are blue with green centers.
I thought I was the only person on earth whose eyes changed color
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Timothy, if you ever need to have work done on your hands, you might look into needle aponeurotomy. It straightens hands and involves no cutting. There are probably many surgeons in the US who perform this now. Since you are the one with diabetes in your family and you have the least affected hands I can sure understand your thinking.
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I have had frozen shoulder 4 times. Two of them coincided with A1c’s in the 5’s and one with an A1c of 4.9. My first frozen shoulder was in 2000 when I was still on NPH and my A1c’s were in the high 6’s and 7’s.
I wrote this blogpost many years ago (before my 4th frozen shoulder) but you might be interested in one article that indicates that duration of diabetes is the strongest correlation to frozen shoulder and another study that says that T1’s who got FS actually had lower A1c’s than those who didn’t.
I read an article recently that indicated that at my age (68), It is possible that I won’t get frozen should again. I hope that is true but it is TBD…
Since frozen shoulder off-topic, I’ll respond to the OP @athx9891. I know of people on Facebook who frequently have A1c’s in the mid-to-high 4’s. Although I have had a couple of tests in the high 4’s, that is not my aim. Now that I use Control IQ on my Tandem pump, I rarely have lows and don’t expect to ever again see an A1c in the 4’s because for sure lows contributed to that number. My aim is to stay in the 5’s and I seem to be able to do that consistently. As always this discussion brings up the question: How good do we have to be?
My lowest lab A1C was 4.6, however it was during chemo, so blood counts were down (shorter life of blood cells, less time to accumulate).
But other than that, I think it was 5.0 on super low carb and lots of effort, when first on dexcom. Now average low/mid 5s.
First A1Cs while using Lente only 1/day, with test tape urine testing, was in 14-15 range. Doctor recommended adding Regular 1-2 unilts if high after meal (1984, 20 years since diagnosis).
Then new job, new city, and got new advice! NPH plus Reg!! 3 shots a day, with finger prick visual bg testing!! Followed exchange plan diet.
A1C down to 9-10.
Next phase, Minimed insulin pump and better bg meters, and later Medtronic first cgm (sof-sensors). A1C down to 7-8, just where doctors wanted it. (This led to finding TuD, inspired by what others were reporting. Where else would I find info on isig factors?).
Switched to Dexcom Seven, G4, G6 newer insulin analogs and finally hit A1Cs in 6s high 5s. Low end of dr comfort level, always asked about lows.
Currently averaging low 5s, and started using Tandem C-IQ last year. A1C remains low 5s, but less BG fluctuations.
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Wait…what? I’ve had frozen shoulder once and that was enough. I thought you could only get it once in each shoulder…but, apparently, not?
Nope. There is not end to the number of times you can get frozen shoulder. My first one was horribly painful and debilitating. The next 3 were a PITA but easier to live with. What has always been frustrating is that after the first one when I knew nothing about what was going on, I have been able to feel the shoulder starting to freeze and no amount of stretching, exercise, or BG control could stop the process.
My progression has been Left/Right/Left/Right with about 3-4 years between each episode.
My first bout with adhesive capsulitis was awful. PT for months with heat and stretching and lots of pain. The physical therapist and I became good friends. Finally a surgeon iinjected pain killer in my back, climbed on top of me and tore my shoulder apart. My physical therapist was with me and couldn’t believe what he did. I walked out happy because I no longer had pain and could move my arm. The second time I had a frozen shoulder I suggested to another surgeon that he rip my shoulder apart. He was horrified and said that the first surgeon could have broken my shoulder. This shoulder wasn’t as bad and healed eventually on it’s own. I was 40 when I had the first one and had the second one a few years later. My A1c at the time was in the 6.5 to 6.8 range. I have most of my range of movement back.
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Marilyn - I’m curious about the Dupuytren’s…did you have surgery for it? Or did it go away? I’ve heard that Dupuytren’s can be inherited. My aunt (who was not diabetic) had it, and I’ve got it, too, in both hands and in my left foot, although it’s called something else when it’s in the foot. My left ring finger is getting to the point where I’m probably going to need surgery in the not-too-distant future.
I’ve also had multiple trigger fingers, but I definitely do attribute that to D.
It’s called lederhose disease in your feet.
I had both shoulders frozen at the same time.
I had dislocated them both in high school. One during hockey and once during basketball.
My doctor told me that it was those injuries that caused it but now I know better
Mine was so bad I couldn’t move my arms up at all.
It took 18 months of pt.
Ruth-Dupuytren’s is called a Viking disease. People of Scandinavian or Northern European ancestry are more likely to have it. It is quite common and is often seen in people with higher than average fasting blood sugars.
I waited until my hands were quite contracted before I did anything about it which was a mistake. I first went to a hand surgeon who said that he would have to remove my little finger. I wasn’t happy and started researching the condition. I found out about a procedure done with needles that was working well in France called needle aponeurotomy.
I found a surgeon in Florida who had trained with the French surgeon who perfected the procedure. I was his 200th patient. All the people in his waiting room had diabetes. The doctor cut the contractions, with needles, in one hand on one day and did the next hand the next day. We had fun touring Florida, because there was no down time.
I needed more treatment a few years later and went to a surgeon in San Francisco who had recently learned the procedure. A couple of years after that I went to a surgeon in Portland, OR. I haven’t needed any more treatment in several years.
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