When I was diagnosed with Type 1 Diabetes in 1976, there were no home blood glucose monitors and I didn’t start my diabetes career with target ranges or numbers. I knew that too many dark brown 4+ readings on my Keto-Diastix urine strips weren’t the best, especially if they were accompanied by dark purple results on the ketone pad. I quickly learned that I shouldn’t delay meals or skip snacks because of the risk of sweaty, shaky, numb-lip lows. Other than that, my job was to follow my 1800-calorie exchange diet, take my insulin once a day, and carry Lifesavers candy in my purse. Victory was defined as staying out of the emergency room with either DKA or hypoglycemia.
In general I did what I was told and managed to lead a mostly normal life. Even as meters and A1c tests arrived in the mid-1980’s, I was subjected to very little pressure to “do better”. I have a notebook full of letters from my endocrinologist with the comments “Great job. Keep up the good work!” next to an A1c of 7.8. I will admit that once it got above 8.0, I usually got the suggestion of “Let’s try for a little lower next time.” Improvements in my A1c accompanied the advent of newer insulins and technology and my participation in the DOC. Even as targets for good control were lowered through the years, I continued to meet or exceed them and bask in my model “compliant” patient role.
Along the way, I’ve occasionally stopped and wondered if what I am doing makes a difference and questioned whether my quality of life might be better if I loosened my targets and relaxed a bit. Like most people with Type 1, I can’t begin to guess how many lows I’ve had in my life. Fortunately few of them have required outside help or even paramedics, but there is no doubt that they have ruined a good round of golf, embarrassed me in front of friends and customers at work, and scared my poor husband to death.
Except when I have an absolute lack of insulin from a pump problem, I feel really good when I’m high. I’m not talking days and days of +300 readings; I’m talking a few hours of 180-280 after meals or just for no reason at all. When I worked, if I felt really good and energetic late in the afternoon, I knew that I must be high and usually I was. I consider that to be a sad reflection on my life. I remember saying to my endo a few years ago that it would be ironic if I spent my whole life “low” and then got killed off by a sliding scale insulin dose on my first day in a nursing home without getting to enjoy the extra years that my good control supposedly granted me.
If you spend much time in online Type 1 message boards, it’s easy to find yourself trying to keep up with people who say that their BG never goes above 120 or 140 and who belong to the Flatliners Club with level tracings between the lines on their CGMs. Even with good A1c’s, those are unrealistic goals for me. I rarely have a day that I don’t soar beyond 140 or eat a couple of glucose tabs to raise my BG to 85.
Quickly I start to question: “What is good enough?” The biggest improvements in control for Type 1’s grew out of the DCCT (Diabetes Control and Complications Trial) in 1995. This study proved conclusively that better A1c numbers resulted in huge reductions in eye, kidney, and nerve complications for Type 1’s. But lest you conclude that this means that you are a failure if your A1c is not in the 5.0-6.5 range, the group which used intensive therapy and was rewarded with a significant lower rate of complications had an average A1c of 7.2%. Currently the American Diabetes Association (ADA) recommends that people with diabetes target an A1c of 7.0 or lower. The American Association of Clinical Endocrinologists goes a bit lower with a recommendation of 6.5%.
What is the return on investment if you get down to 6.0% or 5.5%? Dr. Bernstein preaches that your A1c is not “normal” until it is down to the range of 4.2 – 4.6%. Until recently, the idea of such low A1c’s for Type 1’s was unheard of and totally unrealistic. There are no research studies to measure the benefits of targeting truly normal A1c’s for people with diabetes. We don’t really know if the work to obtain an A1c of 5.5% has significant payoffs compared to an A1 of 6.5%. Although there are some studies that indicate that maybe high variations in BG are worse than a somewhat higher but level BG trend, we really don’t know.
In recent years, Joslin has been studying people who have had Type 1 for fifty years or longer. They are attempting to find why this group of Type 1’s has continued to thrive while many of their contemporaries have either died or been saddled with devastating complications. Being relatively complication-free after 37 years makes me believe that if there is something protecting the Joslin Medalists, I share in their good fortune.
In addition to the Joslin 50-year Medalists, there are the ubiquitous stories of long term Type 1’s who are healthy despite doing nothing right. In a January 3rd blogpost, Scott Johnson talks about a recent stellar eye exam and tells the story of an old timer T1 whose prescription for good health is: “Stay away from doctors and have at least two beers each day.”
I have recently raised my target BG levels on my pump. When hiking, I have stopped correcting numbers in the 140-160 range and have been rewarded with a few 8-12 mile hikes with no significant lows or highs. I continue to argue that some of my recent low A1c’s have fewer lows than previously higher A1c’s because I’m not over-correcting highs. Because of eating a relatively low carb diet and using a Dexcom G4, I have fewer lows than I used to and almost no severe lows. So I don’t want anyone to think that this post is a pity party at all.
So what’s a girl to do? I have no great words of wisdom except to make sure that you have good and protective genes…. I also believe that consistent exercise is a band-aid for blood glucose excursions from too much chocolate and ice cream. I am a huge supporter of CGM technology that allows me to lower my targets with the confidence that I will get warnings when my BG drops too low.
I have come to terms with the idea that I am incapable of doing “worse” in my diabetes care. Meri at Our Diabetic Life wrote a recent post questioning whether it was a problem constantly overriding the recommendations of her boys’ pumps. As a super-mom who is occasionally criticized for trying too hard, she doesn’t know any other way than doing her best. My comment on that post emphasizes that I am the same way: “But for those of us wired to always try hard, how can we attempt to not always try to do our best?”
My best. That’s me and I don’t know any other way to do it. And if what I think is the best isn’t really the best, then that’s just the way it is.
Another really great post, Laddie. Thank you.
There are so many questions, and so many things we don’t understand. Your comment about being offed by a sliding scale insulin dose really hit home with me (it made me smile, only because of the cruel truth to it, ya know?).
I have always felt that the balance between satisfactory diabetes management and good quality of life is a moving target and I think it always will be. I’m right there with you on doing our best to find that balance.
I recently acknowledged within myself that I’m never going to feel 100% proud or satisfied in how I manage my diabetes. Even with the best A1c I’ve ever had this past October, I was extremely excited, but within minutes realized I just have to keep doing this forever. It’s not like any other goal where once you achieve it you can sit back and say, “it feels great to have that done.”
I will always feel like I can do more, but like you said, it’s just my personality and I’m ok with that.t’s
I echo Scott: it’s all about finding that elusive balance between adequate management of one’s type 1 diabetes and flourishing in life.
PS congrats on discovering how to stay active without dropping low all the time.
Outstanding article, Laddie. Covers most of the issues that float through my daily thoughts. I’ve been at this for 46 of my 56 years and I decided after a long talk with a neurologist at Joslin-Boston last year to raise my target bg zone and A1c. One of my biggest challenges it seems is to get rid of 40+ years of chasing the lowest possible A1c, which I’ve concluded is a dangerous strategy for me personally. It becomes almost like muscle memory in a long-played sport — it’s hard to shake the habit cerebrally! It’s been a tough fight to get rid of the wrong goal, quite frankly. I’m getting there — slowly but surely. My hat’s off to you for elevating the dialogue among us.
Great blog Laddie. I think (know) you’re right that low carb helps avoid the roller-coaster blood sugar ride. I’m glad you’re complication free after all these years of type 1. You’re doing a great job with managing your diabetes!