How good do we have to be?
Or maybe I should ask how good do I have to be? Because what is good enough to keep me healthy might not be good enough for you. Diabetes complications can be a capricious foe giving retinopathy or gastroparesis to people who have relatively good numbers and leaving others living with erratic sky-high numbers unscathed. But we mostly know that the better we do, the better off we’ll be.
Me, I’ve made it through 44+ years of diabetes with no major complications. At age 69 my eyes, kidneys, nerves, and cardiovascular system are seemingly okay. Same for my sister at age 72 with 40 years of Type 1. Something crummy in our genetics made us susceptible to Type 1. At the same time something good in our genes is protecting us from diabetes complications. In 2005 the Joslin Diabetes Center launched the 50-year Medalist study to investigate why a select group of people had managed to thrive despite longterm Type 1 diabetes. I am not sure that they have found definitive answers but I think that I share in the good fortune of those longtime survivors. My endocrinologist insists that hard work and newer insulins/technology are what have protected me but I strongly believe that luck and “unknown protective factors” are also in the mix.
Diabetes social media is inundated with people who use CGMs, pumps, newer insulins, smart computer algorithms, strict diets, incredible motivation, and lots of diabetes know-how to push the boundaries of what blood glucose numbers are achievable for those of us with Type 1 diabetes. Some people argue that we are entitled to and should target “normal” blood glucose numbers. But what is normal? The lab normals for my A1c tests indicate that results between 4.0 and 6.0 are normal. The CDC indicates that an A1c of 5.7 and below is normal. But an A1c of 5.7 equates to an average blood sugar of 126 and a 6.0 A1c is a 136 average. Those aren’t “normal“ although they are good for people with existing diabetes. Dr. Bernstein insists that normal is a blood glucose of 83 and our bodies are being damaged by anything higher. That 83 translates to an A1c of 4.5. So depending on whom you listen to, normal can be anywhere from 4.5 to 6.0.
As a contrast to Bernstein’s beliefs there are studies and other diabetes doctors claiming that an A1c of 6.5 is good enough and that anything lower has diminishing returns. Stacy Simms of the Diabetes Connections Podcast has a 2019 interview with Dr. Bill Polanski of the Behavioral Diabetes Institute and Dr. Steve Edelman of TCOYD called “Evidence-Based Hope and Type 1 Diabetes: New Info, New Optimism.” These doctors cite research studies and argue that “decent care” might be good enough and that might include A1c’s as high as 7.0 or 7.5.
Interlude: I am hesitant to mention Dr. Edelman since his recent three donuts video is causing conflict in the diabetes online community (DOC). But lots of things cause conflict in the DOC and I believe that it is medicinal to laugh at many of the absurd things we do to live with diabetes. I like donuts, especially the old fashioned ones with chocolate icing, and am not too proud to admit that I have eaten three at one sitting. And yes, the BG repercussions were horrible. I don’t look at Dr. E’s video as a how-to or permission to gorge on donuts. But I do like his attitude that I shouldn’t be mired in guilt at occasional dietary indiscretions.
So what blood glucose numbers and target ranges should those of us with Type 1 diabetes strive for?
Is there an optimal balance between diabetes mental health and diabetes physical health?
Is diabetes social media filled with numbers games that don’t necessarily translate to better overall health?
Are we playing the numbers game rather than focusing on a good life?
I should insert here that many people with diabetes are struggling to achieve any semblance of “good results” and please know that I respect your struggles. Diabetes is a tough adversary. Diabetes is especially tough when you struggle to afford insulin and technology. Diabetes is tough when you’re doing your best and it is never good enough.
This blogpost is targeting the superstars. The people on social media complaining about an A1c of 5.2 and wanting to be in the 4’s. The people who successfully achieve one target range and then immediately set a lower target range. The people who are critical of parents who allow their child a cupcake. The people who insist on low normal blood sugars when our doctors allow higher. The people whom I am jealous of. The people whom I think are crazy. The people like me who are never satisfied with how I am doing.
Is there ever a number that is good enough?
For sure I don’t know. I just know that I can’t live a “perfect” diabetes life. I make lots of good decisions but never reach the nirvana of a flat blood glucose tracing. I make lots of bad decisions and no amount of pumped insulin, injected insulin, and/or inhaled Afrezza can control the blood glucose spikes. And sometimes I make good decisions and still get a crazy high spike in the middle of the night. Hormones. Pump sites. Who knows? There is no end to the things that can go wrong.
And how will I ever know if I am living a D-life that is “good enough”?
One answer is that according to my standards, my numbers recently haven’t been “good.” Control IQ with my Tandem pump keeps me somewhat higher than my previous targets. At the same time I feel good. I hike 5 miles. I walk for 18 holes of golf. Although I’ve gained weight in recent years, my clothes still fit. So I am probably doing “good enough.”
Another answer is that although my numbers with Control IQ have been higher recently, my endo loves them. I really appreciate virtually having no lows and when I do have lows, I feel them more than I have in the last ten or twenty years. The fact of the matter is that I feel the same with an average of 125 as I feel with an average of 100. And if my average were 150, my guess is that I would still feel good. Is my body being damaged with higher numbers? My endo would say no and she would emphasize that at my age that it is hugely important not to have severe lows, falls from lows, and disorientation from lows. She very frankly says that I probably won’t live long enough to get complications from my current blood glucose numbers.
But I struggle to accept my current numbers. They “fail” compared to the stellar goals and numbers of some of my online diabetes friends. But they are probably great compared to most people with Type 1 diabetes. I often think my mental health is more at risk than my physical health when I look at my day-to-day life with diabetes.
I play golf and am pretty good at the game. To me diabetes and golf are about the same on the frustration scale. No matter how good a golfer you are, you wish you were better. I think that a 6-handicapper is just as frustrated or more frustrated than a 30-handicapper. Same with diabetes. You start to get BG numbers that you never thought were possible. But you know you could do better. You remember those 3 chocolate chip cookies last week. You remember the unexplained highs last Tuesday and the crazy lows after changing your pump cartridge yesterday. All of a sudden your time in range is not good enough because there are people on Facebook getting 100% with a much-tighter range.
Sometimes I wonder: Are we living diabetes instead of living life?
And BTW I can quit golf but I can’t quit diabetes.
Lots of questions. Not a lot of answers.
Another simply excellent post and I’m going to re-read it a couple times as there is a lot to digest.
As for numbers … I was able to finally get my X2 with Control IQ in place as of 01/26/21. I have tons to yet learn about CIQ and mostly to keep my fingers off the pump and let CIQ do it’s job. Albeit I do get impatient now and again. The numbers you ask? Well, my A1C was 6.8 with my Endo visit on 01/22/21. As of yesterday my Endo advised it was 6.4.
That tells me that something with the X2’s CIQ is working well, even though I’m still not pleased with numbers.
Now as I was also raised in a farming community in NE Montana we had a local bakery (now closed as are most of the stores in the very small town) that made the very best plain cake donuts and maple bars. I had one of each over the past week and I paid for it and CIQ was working overtime. It is very hard to resist such temptations save for that (as good as they were) the plain cake donut and maple bar just can’t match up to what that small-town local bakery used to make.
So very glad to see your post and that (all in all) you are doing well.
i have a number that makes me feel good (5.7) My cde says i have ot justify that number to her. I say 6.0 and above is like a red light, she says it is great, i say less than 5.4 has to many lows. she is ready to call the ambulance. I say i want to be more aggressive, she calls for Sheryl.
So what is the best A1C? It is the one you have. There are none better on each day we are tested. When you start there everything else is just shaving the margins
PS: The doughnut video was not a good thing. But I know several who are bearing up hat video
Trying to control Control IQ… M called it doing a “Laddie!” I told my endo that I want to enjoy life and if that means a horrible BG sometimes, well that’s okay. Thanks for continuing to write about D.
Another “hit the nail on the head” post. My endo is delighted with my number but even more with the relentless striving to learn and do better.
My PCP, however, was dismayed at my recent 6.2. Probably doesn’t see many Type 1s – his comment stunned me, really.
Each day is new opportunity to see if I can be in range more. And it’s a new opportunity for many forces to thwart it. And so there’s tomorrow …
Great and thoughtful post, Laddie. There is so much that we do not know … and so many variations of T1D and outcomes. The best “number” is the one at which you feel well, function well and are proud of yourself. This disease is HARD, constant and erratic, often with NO explanation. The best you can do is roll with it and be as resilient as you can on any given day. Donuts are optional!
Hi Laddie. You are a beacon of light in the very murky and dark world of Type 1 diabetes. Yes indeed, there is no “right” A1C….or average sugar…or “time in range”…or whatever. The proof of our success is in each of us. Some like you, 40 year diabetics, do OK…others struggle. Problem is, there are just no guarantees in life, as there are no guarantees in managing diabetes. To put it differently: There is no certainty in an uncertain world. Point in fact: Covid 19. Who would have guessed this would take 3 million lives? As we each journey on the Type 1 trail, we need to balance fun and prudence. At moments, each will win out. There will be an eternal ebb and flow, where we overdo a good meal at one time and live in fear another. This is why I am so grateful to you for sharing your trials…successes and failures. A side note: it is a pleasure to speak with you and learn from you in our Type 1 support group. Thanks for all you do. David
Thank you Laddie…always appreciate your well thought out posts and your style. These days, I’m about doing the best I can with my numbers. My hgba1c averages about 6 and I’m gr8ful. Trying to achieve much below that is more mentally taxing than I’m willing to put up with. Lows could be better. There’s always room for improvement with diabetes management.
Iv suffered with an eating disorder for 52 yrs as well. My food sobriety fits very well with my diabetes food plan. A goodie with sugar is never an option and I’m ok with that, thanks to many years of 12 step recovery. T1 diabetes is permanent, misery about it is optional 🙂
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Perfect! And I never say that. You showed an astounding recognition of how perspectives, experiences, strategies, and coping mechanisms can vary greatly among people, and how that becomes apparent, challenging, and important among those with a chronic disease like Diabetes. For me, with diabetes for 61 years, and the same “luck” you describe, the notion of a “good goal” remains a 24/7 consideration and constantly requires re-visiting given new technologies, and aging challenges too. But mostly, I just wanted to compliment you on not just what you communicated, but how you did it…gracious and thoughtful to all who might read it.
I hadn’t seen a post from you in quite a while and was becoming concerned but now am glad to hear from you. Yes, Diabetes provides many ways to beat ourselves up over everything we do and it is a constant struggle. My wife wishes I could just get a vacation from it.
I loved the Donut video and it helped me by seeing someone else deal with it and explaining the “whys”. I have been hesitant to pre-bolus (T1 @ 30yrs+) but this video helped me see the value. I think we each get hammered about not running low that it kept me from doing it. Not anymore, I’m now using an timer to help me remember to eat.
But to your point in your article, what is good enough……I think if we are just doing the best we can then the numbers will be whatever they are regardless of how much guilt is applied. Every night I tell myself that “I am doing the best I can and things will get better” before sleeping.
Thanks again for all your posts and also keeping up the webpage.