Listen to Terry’s first appearance on the Juicebox Podcast - March 2016
Your doctor is on your side, but not completely
While eating choices play a crucial role in our diabetes health, our doctors also influence our diabetes perspective. Most of us visit our doctors regularly. I’ve been seeing doctors for diabetes about four times per year for 36 years. For the most part, I view my doctor as an ally in my daily struggle with diabetes but I’ve learned that their agenda and values are not completely congruent with mine. And that’s OK - just realize that you are the ultimate authority about your health choices since you are the only one who will directly live with the outcomes of those choices.
It’s best to recognize this so that you can manage that divergence of interest and keep conflict from undermining important facets of the patient/doctor relationship.
Please accept that I speak in a general way about doctors and your experience with your doctor may be better than the personal observations I make here. I’m well aware that great doctor/patient relationships exist. I wish I had a better history with my diabetes doctors and I maintain hope that I may yet grow into one.
Let me start by saying that doctors are on our side. They chose their profession to help others - they’re usually in their job for the right reasons. They can help us manage our blood sugars and navigate the complexity that is T1D.
Their ability to take on the mundane task of keeping all our prescriptions straight is monumental. Pharmacy benefit managers can make their lives as frustrating as ours on that point.
The biggest concern I have with my diabetes docs is that they can be overly fearful of insulin. This distracted fear of hypoglycemia will usually provide guidance that nudges you towards higher overall blood sugar averages in the hope that you manage to stay well away from any hypoglycemia.
Now I realize why doctors see hypoglycemia in this way; severe hypoglycemia kills some of us every year. It is a tragedy and a fact that we should all keep in mind as we make management decisions.
But modern technology and newer management styles can allow many of us to maintain lower glycemia without undue hypoglycemia. Notice that I didn’t say “zero hypoglycemia.” I think that any T1D who manages to remain near normal glucose for a high percentage of time with low glucose variability will experience some hypoglycemia. It goes with the territory.
Doctors can often fail to distinguish between patients with swinging blood sugars and a low average and others with much smaller variability and a closer to normal average. It’s something they should be able to see with today’s CGM charts but many docs reflexively act fearful at the first sight of a normal A1c (< 5.7%) or average blood glucose.
They’re worried about legal exposure and moral responsibility; I get that. The fact that this mindset is more than willing to trade hypoglycemia for hyperglycemia and ultimately greater risk of long-term complications is what bothers me.
It eases the practitioners’ legal and moral fears at the expense of our long- term health — not an acceptable trade for me. I know this doctor mindset is defensible with their average patient but I think doctors should be able to detect patients like me and still support my management choices appropriately.
Doctors are our allies but their position is not fully aligned with ours, a reality with which we should not lose sight.
Be a student of your diabetes
A good doctor can teach you about some important aspects of diabetes but a much larger body of knowledge is available to you, free to observe and learn. I discovered that observing my diabetes CGM data on a daily basis provided me with a potent method to improve my metabolic health. I never took a formal course in statistics but watching my CGM data has taught me important things about my glucose management.
I currently wear a Dexcom G4 continuous glucose monitor (CGM) but will soon transition to the Dexcom G6 shortly before the G4 goes dark on June 30, 2020.
I track four measures every day, listed in order of importance to me:
1. Percent time in range
2. Percent time in hypoglycemia
3. Glucose variability with standard deviation (SD) as the proxy
4. Average blood glucose
Note that the A1c number is not one of these metrics. I find the A1c interesting but not useful in daily management. We all know that an A1c can hide unhealthy glucose variability and excessive time in both hypo and hyper territory.
I set my time in range (TIR) bounds at 65-130 mg/dL to make me stretch and do not simply accept the much less challenging standard (70-180 mg/ dL) set by clinicians and the American Diabetes Association. But that standard may be perfect for you if it causes you to reach for better. If, however, you’re achieving 90-100% TIR with the ADA standard then perhaps tightening that range may be something to consider.
I find that the mere observance of my diabetes data on a daily basis engages my brain at a sub-conscious level and usually leads to better daily choices and performance.
I see a dark side to YDMV
Observation of your diabetes data often leads to the inevitable comparison against some standard or other’s data. This is often where Your diabetes may vary or YDMV comes into play. YDMV captures a generally accepted truth within the diabetes online community. It seems obvious on its face. Since my body differs from yours, it makes sense that my metabolism differs from yours.
When I first became aware of this commonly accepted “truth,” there was something about it that bothered me. While we do differ from each other along perfectly explainable distinctions, like male versus female, child versus mature adult, baby versus teenager, we still share the essential fact that we are all human beings. Our common humanity provides a shared biology that should not be minimized or dismissed altogether.
Certain facts of type 1 diabetes are true across all humans. Insulin metabolizes glucose. Too much insulin causes hypoglycemia. Not enough insulin can lead to diabetic keto-acidosis. Blood glucose in T1D is primarily a function of eating, exercising, insulin dose size and timing.
But, I observe a dark side of the YDMV aesthetic that I don’t think serves us well. A large part of treating diabetes well is determined by both knowledge and attitude.
If, for example, you observe that after every breakfast your glucose rises to 240 mg/dL (15 mmol/L) and instead of reasonable alarm that drives you to change something to improve your post-breakfast glucose, you instead take refuge in the YDMV axiom, then it permits you to dismiss the importance of your observation that your after-breakfast glucose is too high. YDMV may grant you permission to think that a high glucose after breakfast is simply your unique variation from the diabetic norm.
I don’t object to embracing YDMV to explain differences between us. But that explanation has limits and we must check ourselves to make sure we don’t use it to relieve us of responsibility and action to correct an unhealthy trend. My diabetes may vary from others but we should ask ourselves a critical question. Why does my diabetes vary in a certain aspect from others? Is it because of an unchangeable part of me or could it be due to something within my control? Am I doing everything I might to alter some part of my diabetes management and make it better?
For example, instead of concluding that your biology just doesn’t permit reasonable post-meal excursion and writing to off as YDMV, you could for example, experiment with pre-bolusing and discover much better control.
YDMV is true in that it can explain natural variability from one T1D to the next. We should, however, be honest with ourselves and examine whether any variation from the norm is really beyond our ability to manage or maybe we’re undermining good management because we don’t really want to do the work. An honest assessment might let us see a favored habit that is not really serving us well.
Automated insulin dosing is awesome
Overall philosophies like YDMV and becoming a student of your diabetes can help in the larger context of managing diabetes but technical treatment breakthroughs like automated insulin dosing can directly enable a better quality of life. On November 14, 2016, I went live with Loop and couldn’t believe my good fortune! My blood sugar management was already pretty decent at the time but Loop accomplished several things for me. For one, it immediately lightened the cognitive burden that good management of T1D entails.
Overnight, while sleeping, it kept my blood glucose or BGs in a tighter and more normal range. Prior to that, the only tools I had to influence a nice in- range BG while sleeping was a well-calibrated overnight basal profile and the discipline to avoid evening snacking.
Loop shines in the overnight hours. It can analyze and make a dispassionate math-based decision every five minutes, something that I couldn’t do even if I was awake. It’s common for me to wake up from a night with zero CGM alarms and in-range at 70-99 mg/dL. This is a huge quality-of-life boost.
While Loop is still a hybrid closed loop system and requires manual interventions around meals, it supports these decisions with a sophisticated algorithm. Loop also relieves the burden I felt with managing meals and exercise. It didn’t make things perfect but it significantly lightened my load. Loop allows me to boost my time in range, cut time hypo, while it reduces glucose variability and average BG. It enables better numbers with less conscious effort from me, a win-win solution.
I learned that a good fundamental understanding and fluency of basal rates and insulin sensitivity settings enabled me to make adjustments when things changed, as they always do. I still had to pay attention but the minute-to-minute burden was now gone.
Loop is not the only automated do-it-yourself (DIY) insulin dosing system. Other DIY systems include Open APS and Android APS.
We are also witnessing the emergence of commercial hybrid closed loop systems. The Medtronic 670G was introduced in 2016 but its abilities are more limited than the existing DIY systems, yet many people are happy with its performance. Tandem, with its X2 pump has brought forth its Basal-IQ and Control-IQ software upgrades, both highly effective and popular.
In the years ahead we can look forward to other refinements in automated insulin dosing. The BetaBionics iLet system will eventually make possible delivery of both insulin and glucagon, giving hormonal control to prevent both hypos and hypers.
I strongly encourage people with diabetes to consider experimenting with these systems. The ability to share the cognitive load with a machine can bring relief from this ceaseless burden.
I hope that sharing some about me and my diabetes history, how I eat, manage the doctor relationship, learn from my diabetes, a pitfall of YDMV, and automated insulin dosing systems may be useful to a few here. If you’ve made it to the end, I am humbled. I’ve learned much from my peers in the diabetes online community and I find it meaningful to pay forward what I’ve learned.
