Diabetes teaches, if we’re ready to learn
Guest post from Terry O’Rourke
Companion to episode 349 of the Juicebox Podcast
Thank you for clicking on this companion piece that accompanies my interview on The Juicebox Podcast. I realized soon after the interview that I left the listener with an incomplete view of me and my diabetes management philosophy. I hope this fills in missing information and corrects anything that may have left the wrong impression.
I’d like to take this opportunity to further describe who I am, my diabetes history, how I eat, my thoughts on doctors, what I’ve learned from my diabetes, my thoughts on the “your diabetes may vary” adage, and finally, automated insulin dosing.
Let me start by saying that I don’t consider myself special and my perspective is certainly not the only way to think about and manage diabetes. It is simply one way — a way that works for me.
My diabetes background
Norm is Terry's hypoglycemia alert service dog, companion and friend
I am a 66 year-old man who has lived with type 1 diabetes for 36+ years. While I consider my blood glucose management today as excellent, it has not always been this way, far from it. I wish I could say that when it comes to diabetes, that I’m a quick learner and I’ve avoided learning things the hard way.
In fact, I spent decades making almost every diabetes mistake one can make. I am human and still make diabetes mistakes every day. One thing diabetes teaches is humility!
It wasn’t until year-28 of my diabetes journey that I finally resolved to take comprehensive action and set out to gather the information I needed to pivot to a more effective and satisfying management style.
I’m sorry to admit that my current management style came about primarily due to the onset of secondary complications. A gastroparesis diagnosis found me in 2012 and coronary artery disease followed in 2018. Diabetes has scarred me and I used those set-backs to fuel my motivation and hopefully lessen the effect those complications might take on the remainder of my life. Writing about this journey and sharing my experience with the diabetes community is one of the things that brings meaning to my life.
Disclosure of my current management numbers is done with some trepidation. I am not here to brag and I know that reporting nearer-to- normal blood glucose levels with T1D can irritate some and intimidate others — I don’t intend that. I also know that managing T1D is hard and complex — not everyone can reproduce what I do with their unique situation and I understand that.
I don’t see any way around this disclosure dilemma, however. I want you to know that my tactics lead me to good glucose management and I don’t want to just paint my outcomes in an ambiguous way. So here goes.
I much prefer % time in range, % time hypo, glucose variability and average glucose as the definitive measures of my glucose management. I use a continuous glucose monitor or CGM data for these measures. My A1c number interests me but I don’t use it to provide essential feedback since I realize that it is inherently an average number that can hide unacceptable variability as well as glucose values too far out of range.
My time in range (65-130 mg/dL) is usually > 90% with time low (<65 mg/ dL) < 5%. Standard deviation serves as my stand-in for glucose variability and is often =< 20 mg/dL. My average glucose hovers between 92 and 102 mg/dL. Meeting these personal standards rewards me with a better quality of life sustained by more energy and clearer thinking.
Own your diabetes
Now that you know the metrics that steer my diabetes management, I want to share one philosophical point that guides me. The “own your diabetes” philosophy drives my diabetes management. Your doctor does not live with your diabetes. Neither does your spouse, friend, child, parent, teacher, coworker or boss. Your diabetes is your diabetes! It is unique to you and directly impacts the quality of your life.
Having said that, I see parents of children with diabetes as an exception to this philosophy. I consider parents of children with diabetes, especially young children, as close to diabetes as a person can be without actually being diabetic. I suspect the close and empathic bond that parents and children enjoy is what makes this possible.
If you’re new to diabetes, you may go through a phase of bargaining as you adjust to this daunting reality. That’s fine for some short time and it does serve as way to cope with the shock that a diabetes diagnosis can leave in its wake. But don’t let that bargaining turn into a chronic affair. Bargaining delays and can prevent diabetes ownership. It took me 28 years to learn this hard lesson; it needn’t take so long.
Diabetes is as much a part of you as your profile, smile, and the way you move. It’s inherent and inseparable from your nature.
By owning diabetes, you will give it what it requires at the time it requires it. In return, it can reward you with metabolic peace and inject your life with energy, optimism, and possibility.
I realize that the above statement is an ideal view of things and tempering with pragmatic choices will be necessary. But I think targeting optimal goals motivates better than shooting for tepid uninspiring goals.
Let me recognize here that my situation as a retired single man makes it easier for me than people in other circumstances. I realize that other demands like family and work responsibilities can make doing this tough, but I’m expressing an ideal here, one that hopefully can provide a sentiment to power stretching toward better, realistically conceding that perfect is impossible.
I realize that even diligently acting on this philosophy of owning your diabetes will not turn your life into a continuous series of rainbows and unicorns, but it can set the stage for happiness that gluco-normals take for granted.
Listen to Terry on the Juicebox Podcast - June 2020
Your eating style matters
Food choices are a sensitive topic for everyone, including non-diabetics. Very few people take pleasure in seriously considering a change to their eating habits. Considering a change in diet ranks right up there with changing your religion or politics. It’s not a popular topic of discussion.
I choose to limit carbohydrates in my diet. Carbohydrates are the main driver in the need for insulin to metabolize glucose. Fewer carbs means less insulin is needed and therefore means smaller dosing errors — Bernsteins’s law of small numbers.
Limiting carbs in my diet has allowed me to lose significant weight and move me from the overweight to normal weight category. I cut my total daily dose of insulin to less than half and my blood sugar control markedly improved.
I do believe that too much insulin often leads to negative long-term health consequences. For my first 28 years with diabetes, my main glucose management tactic involved deliberate overdosing for meals followed by strategic snacking later to avert imminent hypos. This led to slow yet consistent weight gain and some scary hypos when life distracted me from my strategic follow-on snack.
There are more ways to eat successfully with diabetes than the path I’ve chosen. My way is not the only way but it’s a way that works for me. Others may choose to eat a high-carb and low-fat diet and still maintain good glucose management. Sugar-surfers, for example, can eat many more carbs than me and by paying attention and responding in a timely way with dynamic insulin dosing can keep their glucose in a good range.
If you consider limiting carbs to help with your glucose control, personally experiment to discover which foods and how many carbs work for you. You may be able to consume more carbs than me and still keep your blood sugars in check. “Eat to your meter” is a viable and potent tactic.
Processed carbs, I believe, are bad for everyone’s health. If it has a long ingredient list and you don’t recognize some of the items, you should consider avoiding that food. A once-in-a-while treat or convenience is one thing, eating that treat everyday may harm you.
A low-carb, high-fat diet as well as a high-carb, low fat diet can both be made to work with good glucose control but the Standard American Diet (SAD) of high-carb and high-fat is often the source of obesity, metabolic syndrome, and overall poor metabolic and immune health.
As I said in the podcast, no food tastes as good as a normal in-range blood glucose level feels.
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.
Video: Diabetes Hands Foundation Interview
It was my very sincere honor to be asked by the Diabetes Hands Foundation to participate in a live interview with their very own Emily Coles... We spoke about many type I diabetes issues, I made some bad jokes, Arden even made a couple of cameo appearances... I hope that you have time to check it out.
Live TuDiabetes Interview with Scott
Join Scott this Thursday, July 18 for a live video chat with Emily Coles from TuDiabetes.org. Scott will get chatty about blogging, type I diabetes advocacy, being a caregiver to Arden, his time as a stay-at-home dad and much more. It's going to be fun, hope to see you there!
Chat begins at 1 pm PDT, 4pm EST.
Please rsvp to the event on the TuDiabetes website so Emily knows how many scones to make - such a wonderful host!