Tangled and Intertwined: Diabetes and Covid-19

A while back I started a blogpost with the words “tangled” and “intertwined.” The emotions prompting those words were powerful but I abandoned the post in favor of laziness.

Last Saturday I “attended” a virtual session at Friends for Life Orlando titled “Avoiding and Overcoming Diabetes Burnout.” The moderators were William Polonsky, PhD, CDE and Kerri Sparling. Partway through the session Kerri mentioned something about her diabetes and coronavirus being iinseparable and I thought “yes!” That is what I had originally been planning to write about. No doubt if Kerri were still blogging, she would say it better than I will, but we likely have the same thoughts muddling through our brains.

A lot of my musings go back to late January when I began using Dexcom G6 and Basal IQ on my Tandem X2 pump followed by Control IQ. I was on Control IQ for less than six weeks when the coronavirus invaded my world. For those of you not knowledgeable about diabetes tech, Control IQ is defined by Tandem Diabetes:

ControlIQ technology is an advanced hybrid closed-loop system that uses an algorithm to automatically adjust insulin in response to predicted glucose levels to help increase time in the American Diabetes Association-recommended target range (70-180 mg/dL).

I wrote a couple of blogposts about my early experiences with Control IQ and I don’t think that my opinions have changed a lot since the March post titled “Six Weeks: More Thoughts on Control IQ.” I am mostly okay with it and really appreciate the fact that I have almost zero low blood sugars. But my average blood sugar is higher than pre-Control IQ and I am frustrated that I am required to use Tandem’s conservative BG goals instead of the targets that I prefer. In general I am still trying to figure out how to lower my average blood sugar without constant suspensions of insulin that result in sticky highs later on. Some people on Facebook seem to do that successfully and post daily graphs that don’t make sense to me based on my experiences. At a late May appointment I questioned my endocrinologist on whether she had any suggestions, and she said “No. Control IQ is doing what it is supposed to do and you are doing great.”

And she is right. But diabetes is never independent of mental health and I struggle to accept the new numbers when I liked the old numbers and don’t completely understand the new numbers. But the old numbers reflected many low blood sugars and a lot of glucose tabs. At the same time the new numbers don’t display what I think the Sleep Mode of Control IQ should target. I have never experienced classical diabetes burnout but my diabetes is mucked up with anxiety, perfection, lack of perfection, unattainable goals, and just plain never-getting-a-vacation.

In the last paragraph I introduced “mental health.” Enter Coronavirus. I am 68 years old and have lived with diabetes for 43 years. I consider myself to be healthy but I deal with multitude autoimmune conditions. If I get diagnosed with Covid-19, I am probably doomed. But who knows? My self-destructive side just wants to get the virus and be done with it. Either die or hopefully recover with ongoing immunity. But don’t get worried. I am not attending Covid-19 parties and have recently started using InstaCart for grocery and Costco deliveries. 

But like every other person in the world, I mourn my former life. I miss fitness classes at the YMCA and reminisce about hanging out at McDonald’s drinking cheap Diet Coke while surfing the web and writing blogposts. I miss going to the movies. I long for lunch and coffee with friends. I desperately want to visit my Maryland grandchildren and currently accept the risk of outdoor babysitting the local grandkids. I am okay most days but about once a week I wake up with a black cloud over my head.

The black cloud is part coronavirus and part diabetes-Control IQ. I can’t untangle what is what and for sure I haven’t figured out a way to eliminate the occasional days that are plagued with pit-in-the-stomach sadness and frustration. I am totally cognizant of the fact that 42+ things influence blood sugar and that I will never be a “Perfect Diabetic.” I am fine most days but the wind periodically blows in black clouds that suffocate my normally optimistic view of life. 

I am sad. I am frustrated.

I am healthy. I am mostly happy.

I know that I live a privileged life. I have no worries about acquiring insulin, CGM sensors, and pump supplies. I have access to online fitness and yoga classes and live near safe walking trails. My husband is employed and at the moment we are safe financially. My children have jobs and their families are doing relatively well considering the stress of home schooling and few daycare resources. 

But when the black clouds park above my psyche, I can’t tell whether they are the result of diabetes or Covid-19.

It doesn’t matter.

In my world diabetes and Covid-19 are tangled and intertwined. 

Six Weeks: More Thoughts on Control IQ

This is not a “How-To” for Control IQ. I haven’t completely figured it out and for sure I can’t provide much guidance for other people using the system. I think that each of us will have to find a way to succeed (or fail?) with this algorithm and what works for me might not work for you. In fact my road to success probably won’t work for you. Actually at the moment it is not completely working for me. But it is getting better.

I finished my February 13 blogpost with this comment: “Control IQ is a step forward for me. I don’t love it yet. But I think I will.”

A month later I would say something similar. I don’t love Control IQ and occasionally wonder if I should have stayed with Basal IQ. But I am still committed to figuring this out. Even on my worst days I am not tempted to turn off Control IQ because the benefits of 24-hour protection from lows and better-than-before overnights are addicting.

Here are some things that I have learned in the last couple of weeks. Some people may disagree with my analysis of how the algorithm works and I look forward to feedback. For sure I am not quoting the Control IQ User Manual.

*** Use social media and Facebook to learn what is working for other Tandem Control IQ users. Don’t become paralyzed or discouraged when you seen flatline graphs and average BG levels of 100 from other Control IQ-ers. I don’t seem to be able to average BG’s in the 90’s or low 100’s because my insulin keeps suspending with resulting highs later on. But I am willing to learn from others who are succeeding and even from those who are struggling.

*** Consider turning to “professionals” to help to dial in settings. (Every blogger has to give the disclaimer that you shouldn’t do anything without talking to your doctor.) I am such a self-manager of my diabetes that it would never dawn on me to make a special endo or CDE appointment to talk about Control IQ. But I will be very open to suggestions from my doctor when I see her in May. Frankly right now I don’t think that many medical professionals have enough experience with Control IQ to adequately analyze our settings but I know that they will be learning in the next months just as we are learning. If I wanted to consult with someone experienced with hybrid-closed loop systems such as Looping, OpenAPS, Control IQ, and the 670G, I would probably contact Integrated Diabetes Services.

 *** Figure out your goals but don’t be afraid to tweak them as you move farther into this semi-automated insulin delivery system. Consider changing your target range so that you “succeed” within the parameters of Control IQ. Prior to Control IQ, I used a target range of 70-150 and stayed in that range a good percentage of the time. Every week that I used Control IQ I saw my statistics for that range get worse. For me that was discouraging not motivating. My endocrinologist has always encouraged me to use 70-180 and I have switched to that target for a while to boost my mental health. Interestingly my average BG between the two range choices is not different because I am doing the same things to have acceptable BG numbers. But I feel happier seeing a higher time in range in Dexcom Clarity reports. BTW I still use 150 as the high alert on the pump.

*** I think that one characteristic of “ideal” Control IQ settings is the avoidance of long suspensions of insulin. When I say “long”, I mean one hour or more.  Unfortunately I see such suspensions almost every day. Whenever I go 1-2 hours without insulin, I always go high because I just can’t be without insulin that long. The problem is that these suspensions don’t happen at the same time or in the same circumstances each day. My solution has been to learn strategies to trick Control IQ into giving me more insulin during and after these suspensions. I first tried manual boluses but that often just prompted Control IQ to suspend insulin again. So thanks to a Facebook friend, I learned about entering “fake carbs” so that Control IQ thinks that the bolus will be matched by carbs. With fake carbs, Control IQ doesn’t automatically suspend or reduce insulin as it might with a manual bolus because it expects carbs to raise your BG level. The downside of this is that your average daily carbs statistic becomes meaningless.

*** Don’t eat. Okay, that is an exaggeration…. But meal bolusing is different for me under Control IQ than previously with Basal IQ or regular pumping. In general I have to analyze what Control IQ has been doing for the last hour or two to decide how much to bolus, how far ahead to pre-bolus, and whether I need to “trick” Control IQ by adding fake carbs to the real carbs. Once again if the meal bolus is preceded by a long insulin suspension, I need the bolus to be larger than if it was preceded by my normal basal rates. I have to be careful with pre-bolusing because Control IQ will likely suspend insulin if it sees my BG dropping too low before eating. Fortunately unlike Basal IQ, Control IQ does not suspend extended boluses and that is a tool I am sometimes using to smooth the action of mealtime insulin. 

*** Simplify your pump settings as you work to figure out optimal Control IQ settings. I initially started Control IQ with my “Normal” settings and the results were not great. Then I created a new profile titled “Aggressive” and it was indeed too aggressive. I didn’t have much insight into what settings were working and which weren’t. So I created a new profile titled “One Rate.” Same basal rate, correction factor, and carb ratio for 24 hours a day. It is very similar to my pre-Control IQ settings although the carb ratio is slightly more aggressive. I have since added one more time period to that profile so technically it should now be “Two Rates.” IMO it is a good idea to use new profiles as you experiment with settings. Eventually I’ll delete most of the extra profiles.

*** Use your experience to help others in the diabetes community. It takes a village to figure out Control IQ and everything related to diabetes.

*** Sell your stock in companies that manufacture glucose tabs. These automated insulin systems are really good at reducing lows. At the same time continue to always have fast-acting carbs available. Control IQ is good, but it’s not a cure.

Summary:  My main goal with Control IQ is to have reasonably good numbers with less effort. My average blood sugar has risen with Control IQ and I expected that. One reason is fewer lows. I rarely see the 70’s and almost never the 60’s or below. The other reason is that I spend a lot of time between 100 and 125 and not much time in the 80’s. I am OK with that. I continue to use Sleep Mode 24/7 with a target range of 110-120. Less effort has not completely materialized and I am still micromanaging. But increasingly I am having longer periods of time when I don’t glance at my pump and just trust the algorithm to do the work. As long as I compensate for long insulin suspensions, that strategy is starting to show some success.

So maybe it is getting easier.

Initial Thoughts on Tandem Control IQ

I started using Control IQ on my Tandem X2 pump two weeks ago.

In a mid-January blogpost I mentioned postponing the decision to move to Control IQ and just staying with Basal IQ. For those of you who don’t follow diabetes tech much, the main difference between the two algorithms is that Basal IQ only addresses low blood sugars and Control IQ works to limit both highs and lows. But along with addressing highs, Control IQ targets a higher range than I am comfortable with. For sure the biggest issue about the decision to update the software of a Tandem pump is that if you don’t like Control IQ, you cannot go back to Basal IQ. You’re stuck.

It was a joke to think that I would delay the opportunity to update my pump to Control IQ. I admit it. 1) I am a diabetes-tech junkie and 2) I have no willpower.

So here I am with Control IQ. There was a poll in a Facebook group this morning that stated “I have been using CIQ for at least two weeks and….” The possible answers were a) Love, b) The jury is still out on that, c) I don’t love it or hate it, d) I am so excited to get it, and e) If I could go back in time, I should have stuck with Basal IQ. 

I voted for c) and then commented: “I like Control IQ but am still micro-managing. So it’s not Love yet, but it’s a strong Like.”

Because I had a good A1c and TIR (time in range) before Control IQ, the main proof of success for Control IQ will be if I can get similar or slightly higher numbers without micro-managing. Without diabetes on the brain all of the time. Without constantly looking at numbers and either taking small boluses to correct or rage-bolusing when I am frustrated. There is a lot of room to improve my life with diabetes but I am not willing to accept an average blood sugar of 150. But I am willing to camp out in a range of 100-120.

I am being what is called a “Sleeping Beauty.” That means that I am using Sleep Mode 24 hours a day and that uses basal adjustments to target a range of 112.5-120 but does not include auto correction boluses. In contrast Normal Mode is okay with blood sugars up to 160 and no auto boluses unless BG is predicted to be above 180. Although my endocrinologist would say that those numbers would be fine for me, I want to stay lower and know that I can most of the time. There is a chart on this page showing the ranges for Normal Mode.

Many people have found that they need to adjust their pump settings to be successful with Control IQ. Many or most users have written on Facebook about making their settings much more aggressive. My initial days with Control IQ were rocky and I rarely had BG’s as low as the 110-120 range, even overnight. So I created a new pump profile titled “Aggressive.” And it was aggressively aggressive with high basals and correction factors that I had never previously used except when on steroids. Ultimately this aggressiveness was counter-productive because my basal insulin kept being reduced or suspended for long periods of time and that resulted in highs later on. This pump screen photo is an ugly result of too aggressive settings. My basals were reduced and suspended for almost 3 hours.

So then I created a new profile titled “Control IQ” which is somewhere in the middle between my previous “Normal” setting and the “Aggressive” setting. I sound like Goldilocks and the Three Bears with this porridge is too hot, this porridge is too cold, and this porridge is just right. There have to be some pump settings that are not too strong and not too weak, but just right!

Ultimately I think that minor adjustments to the Control IQ profile will be a good place for me. It uses about 10% more insulin than the pre-Control IQ “Normal” profile and isn’t overwhelmed by too many long insulin suspension. 

Meals are still hard to figure out with Control IQ. Sometimes when I pre-bolus for carbs, the system suspends my insulin and that is counter-intuitive to the BG rise that I know is coming. My current solution is to just eat lower-carb meals. That isn’t much different from how I normally eat but I need to get better at dosing for what I want to eat. I have been learning new things every day both from my own experiences and those of others on Facebook. One could argue that I shouldn’t get pump training from Facebook but I don’t think that endos and CDEs have enough experience with Control IQ yet to give expert advice. Plus we know that those of us with diabetes living in the trenches really are the experts.

Previous to using Control IQ I always consulted my phone and watch to see what was going on with my blood sugar. With Control IQ I am a pump junkie. My home screen shows red areas where insulin was reduced or suspended. A little diamond shows gray for normal basal rates, blue for increased rates, yellow for reduced rates, and red for suspended insulin. The Control IQ history is fascinating but it takes ten (!) button pushes to access it. It shows at what times and how my basal rates were adjusted. In the future Tandem will have a phone app that will mirror my pump screen. That can’t come soon enough because I keep pulling out my phone to get info that is only on my pump.

Be patient, Laddie. Be patient. It is coming.

Unlike some seniors who are askance at letting a tech device control their insulin, I am excited. I need help. I want to sleep better. I want fewer alarms. I want BG graphs with rolling hills and valleys and fewer Himalayan peaks. I want my diabetes to be easier.

I’ll say it again. I want my diabetes to be easier.

Ultimately I believe that all hybrid artificial pancreas systems (Tandem Control IQ, Medtronic 670G, Omnipod systems to come, and even do-it-yourself Loop systems) are limited by the speed of insulin. We need faster insulins with shorter durations. We need the ability to set our own target ranges. We need CGM systems that are even more accurate than today’s models.

But it is all coming. Step by step by step. 

Control IQ is a step forward for me. I don’t love it yet. But I think I will.

 

*The Goldilocks image was purchased from Shutterstock.com.