Category Archives: General Diabetes

How Good?

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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.

Control IQ Basal IQ: No, It’s Really Mental Health

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I purchased my first Tandem X2 pump in December 2016. Shortly after that in April 2017 I transitioned to Medicare. Thus when my original pump went out of warranty in early December 2020, I was free to choose a new pump. I am sad that there are not more pump choices these days. I hated Omnipod and it is a poor financial choice under Medicare. I liked my Medtronic pumps ways back when, but I would never abandon Dexcom for Medtronic sensors. So it is Tandem again. I was not unhappy to continue with Tandem but I was sad to miss the excitement of a new D-device, because the new one is the same as the old one.

But not entirely.

I had the choice of purchasing a Tandem X2 pump with the Control IQ software or a Tandem X2 pump with the older Basal IQ software. So I chose Basal IQ and I am now in the unique position of being able to choose between Basal IQ and Control IQ depending on which pump I am using. 

I have never been completely satisfied with Control IQ and chafe at target ranges that are higher than I prefer and significant insulin suspensions that result in highs later on. Basal IQ is much quicker to resume insulin after suspensions and I was excited to get back to it. Initially I was happy with somewhat better BG readings and more control over my pump behavior. 

But after a month, I chose to go back to Control IQ today.

Why?

One of the reasons is minor. I really missed the automatic population of my sensor reading when I was bolusing. Somehow it has been a step backwards (okay, I am lazy!) to have to type in the number. Minor, but significant.

Another reason is that my initial excitement and honeymoon period with Basal IQ ended quickly and I wasn’t doing better with it than with Control IQ.

But mostly I missed the constant basal adjustments that Control IQ makes to tweak my blood glucose. (Please note that I use Sleep Mode 24/7 so I don’t get automatic boluses by Control IQ.) Because our infused insulin is slow, slow, slow, these adjustments don’t work as quickly as my impatient self would hope, but they do help. Control IQ gives me better and more consistent morning wake-up numbers. It also allows me to occasionally forget about diabetes when I hike and play golf. 

I have never figured out “perfect” pump settings with Control IQ and previously took an injection of Lantus every evening to give me insulin that Control IQ couldn’t take away. https://testguessandgo.com/2020/09/25/going-untethered-with-control-iq/ That worked well but I have not missed the daily 7:30PM phone alarm beeping “Time to take a shot, Laddie!” So I am going to try to do without the untethered regimen, but that remains to be determined.

I have a history of my doctors thinking I am doing great regardless of my diabetes regimen. I was one of the last Type 1 patients to start Lantus because my world-renowned endocrinologist thought I was doing well on NPH. During the 2015 Blog Week (remember Blog Week?!?), I wrote that the biggest improvement in my diabetes care was the result of an internal medicine doctor switching me to Lantus. So much for world-renowned endocrinologists….

https://testguessandgo.com/2015/05/14/my-blue-ribbon-first-place-change/

That being said, I think that I am capable of getting the same A1c on injections, pumping without sensors, pumping with sensors, Basal IQ, and Control IQ. I truly believe that I am safer with sensors, but I can get reasonable BG numbers without them. Not completely true, because there would be some bad lows. But what I truly want is easier diabetes and that seems to be an elusive goal.

The biggest weakness in all of my regimens is “ME.” Imperfect me, who works hard at diabetes every day, but who constantly makes less than optimal decisions. Second glass of wine resulting in too many post-dinner cookies. Thinking there is a way to successfully bolus for pizza or Kraft Macaroni ’N Cheese. Buying a Diet Coke at a convenience store and being too lazy to check to see if it is really regular Coke. (It happened this week. A perfect flatline in the 90’s up to the mid-200’s in 20 minutes.) There is no end to the ways to screw up. And I am a master at thinking WTH as I muddle through my days.

But WAIT!!!

I am not perfect but the real culprit is TYPE 1 DIABETES. It is amazing how incredibly difficult it is to control blood sugar without a functioning pancreas. When I make good decisions, I get a bad pump site. I wake up at a good number and don’t do anything “wrong,” but my BG soars today while yesterday it stayed in target range. I am a senior with skin and tissue issues that sometimes rebel at infusion sets and adhesives. I am really smart and experienced, but sometimes I have no idea what is causing highs and lows. My lab tests confirm that my body makes zero insulin and this is hard.

I am very cognizant of the fact that the more my insulins and technology improve, the more I raise my expectations of what my diabetes numbers should be. So I am always falling short.

I think that once again I am writing about diabetes distress. My endocrinologist is very satisfied with my diabetes numbers. She believes that at my age (68) with 44 years of diabetes, my Dexcom tracings are perfect. And I am really, really, mostly, mostly okay. But I could do better.

By switching back to Control IQ, I am going to work to accept the help it gives me and not stress over the limitations of the algorithm. And the limitations of my insulin. And the limitations of my behavior.

My old pump has battery issues and ultimately I will have to decide whether to update the new pump to Control IQ. But right now I am happy to have CHOICE. I may choose to go back to Basal IQ on the new pump next week. I may choose to stay with Control IQ on the old pump.

I like choice.

Unfortunately one thing I don’t have choice about is having diabetes….

Jigsaws and James Bond

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I would love to say that I am doing fantastic things at home during the coronavirus crisis.

But I am not.

I haven’t cleaned closets. I haven’t planted a vegetable garden or dug out the dead shrubs in the backyard. I periodically delete emails but still have 25,000+ and have been accused of being an “email hoarder.” I have finished a couple of digital books through my library’s Libby app, but have abandoned many more halfway through. I am doing better with romance blood and gore audiobooks which inspire me to walk and listen. Five to six miles a day.

Mostly my attention span is worthless. I am watching very little TV and would argue that most of it is not worth watching. One of my hiking friends recommended Belgravia on Epix and I have never made it past the second episode. I have watched the first episode 3 times hoping to get engaged. But no. 

What am I doing?

1500 piece jigsaw puzzles on the kitchen table. My husband is more addicted than I am but we both spend time every day constructing wild animals.

And then cows, cows, and more cows.

And then there are James Bond movies. Fortunately we have a cable TV package that gets us access to almost every channel in the universe. We are currently watching films from the ‘60’s and they are quite horrible. Except that they are James Bond.

JAMES BOND….

 

Looking at Diabetes:  After abandoning Tandem Control IQ for several weeks, I have changed my pump settings again. Again…like the tenth time. I am doing better with Control IQ but know that I won’t be happy with it until I can target BG 95-105 instead of 110-120. Overnight I spend a lot of time at 140-150 and don’t think that Control IQ is working hard enough. But if I make the pump settings more aggressive, my basal suspends for hours and I do worse. I have a telehealth endocrinologist appointment in two weeks and wonder if she’ll be able to see patterns and suggest improvements in my pump settings. Overall I know that my doctor will be happier with my higher BG averages and I know that I appreciate having fewer lows. 

Sleep or lack thereof:  I lose interest in books and TV by 9:00pm. I try to stay awake until 10:00 but don’t always succeed. I often wake up at 2:00am and toss and turn for a couple of hours. My dreams are crazy and vivid. I know that it is dysfunctional senior/diabetes sleep. At the same time I am never tired during the day and know that I am getting sufficient sleep. But exploring Minneapolis with Anthony Fauci night after night is a weird experience….

I am slowly but surely getting organized for diabetes if I unfortunately get Covid-19. I have started a medical resume as outlined by Joanne Milo, The Savvy Diabetic. I have filled a plastic bin with pump and CGM supplies. But I am not really organized and prepared enough. I need to focus more because my organization could be the difference between life and death.

I am mostly comfortable in how I am living these days. My close-by grocery store has senior hours and I feel safe in my mask and paying with Apple Pay. I spend time with the local grandchildren outdoors and 6-feet away. No hugs but I use my chalk and my 3-year old granddaughter uses her chalk and we draw flowers, squares, and stars on the driveway. I play Yahtzee with the older girls and they manage to beat me every time with lots of Bonus Yahtzees. My 12-year old grandson tries to convince me every day that he needs a new phone for his birthday. The other grandchildren live far away and we touch base weekly through FaceTime.

My days are not what I would have yearned for as I have moved into old age. But I am fine. I am a younger-oldster and not totally doomed. I do my best to celebrate the good things in my life and refuse to live in gloom and doom.

I pray that we will all stay safe.

ADA Webinars and Podcasts: Inpatient Care for Covid-19 Patients with Diabetes

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In recent weeks Diabetes Connections and The Juicebox Podcast have featured interviews with individuals with Type 1 diabetes who contracted and recovered from Covid-19. These podcasts have also shared conversations with medical professionals discussing the coronavirus and diabetes. While these episodes were interesting, they did not address my biggest Covid-19 concerns as a person with diabetes. How will my diabetes be handled if I am hospitalized with Covid-19? Not if I have a mild-to-moderate case and can mostly self-manage my diabetes. How will it be handled if I am incredibly ill on a regular hospital floor or even in the ICU? Nothing I have listened to or read has answered these questions.

Until now.

For several years I have listened to the podcast Diabetes Core Update sponsored by the American Diabetes Association. The podcast has historically been a monthly review of “clinically relevant” studies from ADA professional publications. Most of the articles address Type 2 medications so the podcast is not usually relevant to me. But I listen anyway hoping to learn something and hear an occasional Type 1 discussion.

In April Diabetes Core Update released about 10 podcasts directly related to diabetes and the coronavirus. Although these podcasts are directed towards medical professionals, they contain the information that I as an engaged patient am starved for.

Last weekend I finally hit the goldmine with two episodes directly addressing the inpatient care of patients with diabetes, particularly those patients on insulin therapy. This population includes all of us with Type 1 diabetes and medical professionals in the trenches are finding that many/most patients with Type 2 diabetes and even pre-diabetes and undiagnosed diabetes are ending up requiring insulin when battling coronavirus. 

The first podcast is titled American Diabetes Association Town Hall: COVID-19 & Inpatient Care for People with Diabetes. The 6 panelists are: Shivani Agarwal, MD, MPH, Albert Einstein College of Medicine; Jennifer Clements, PharmD, FCCP, BCPS, CDE, BCACP, American Pharmacists Association; Robert Eckel, MD, ADA President, Medicine & Science; Irl Hirsch, MD, University of Washington; Melanie Mabrey, DNP, Co-Chair – American Association of Nurse Practitioners – Endocrine Specialty Practice Group; Jane Jeffrie-Seley, DNP, BC-ADM, CDCES, Association of Diabetes Care and Education Specialists. 

The topics discussed include insulin regimens in the hospital, blood sugar targets, use of patient devices such as meters, CGMs, and pumps, how coronavirus seems to affect BG levels, lots of dangerous hypoglycemia, and so on. 

The town hall can be seen as a webinar at this link:  American Diabetes Association Town Hall: COVID-19 & Inpatient Care for People with Diabetes

To access the podcast, go to Diabetes Core Update Podcasts and find this episode which is titled Covid-19 Inpatient Town Hall and was released on April 23. This page will give you the ability to open the podcast in Google Play, Apple Podcasts, or listen on your device.

The second podcast/webinar is titled Inpatient Care Questions April 15 Update and includes questions and discussion related to the topics from the Town Hall. The panelists are:  Robert Eckel, MD, ADA President, Medicine & Science; Irl Hirsch, MD, University of Washington; Mary Korytkowski, MD, University of Pittsburgh.

You can access the webinar at this link:  Answering Your Questions: Inpatient Care Questions April 15 Update.

To access the podcast, go to Diabetes Core Update Podcasts and find the episode titled Covid-19: Inpatient Management #2 which was also released on April 23. This page will give you the ability to open the podcast in Google Play, Apple Podcasts, or listen on your device.

My thoughts:  Although I strongly suggest that you listen to both podcasts, here are some things that I heard. Coronavirus seems to raise blood glucose numbers drastically and many patients require multiple times their normal insulin. Many people who didn’t previously require insulin do need it while hospitalized. IV insulin is frequently used in the ICU but injected insulin is more common on regular floors. Patients are encouraged to bring their own supplies including meters, pumps, and CGMs. As long as you are able to safely operate your pump, you will most like be able to keep it. That might differ in smaller community hospitals. 

Severe hypoglycemia has been seen in some patients, especially elderly patients. For that reason BG levels are often targeted to be in the range of 140-180 rather than 110-180. Nursing staffs are trying to minimize the number of direct patient contacts and will try to bundle BG checks, vital checks, and medication administration into each visit. 

Although there is currently no hard data to support the hypothesis, the medical professionals thought that those with well-controlled diabetes prior to Covid-19 have a better prognosis than those with complications and co-morbidities. But they all considered blood glucose control in the inpatient setting to be hugely important.

I am terrified of contracting Covid-19 and being so sick that I must be hospitalized. Along with most people I know with diabetes, I will continue to stay home most of the time and social distance when I am at the grocery store or walking in my neighborhood. My next project is to organize a Diabetes Go-Bag to use if I do end up going to the hospital. I am currently woefully unprepared for that scenario. 

** Please note that these episodes have somewhat different titles on different webpages, but I think you’ll be able to find them.

Diabetes Daily: How Covid-19 is Affecting People with Diabetes

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Background: Several years ago Diabetes Daily teamed with Thrivable Insights to create the Diabetes Research Panel. In late March 1,300 people with diabetes (48% Type 1 and 52% Type 2) responded to a survey addressing their concerns and fears about the coronavirus and what they were doing to protect themselves.

Here is an infographic sharing the results of this initial study. If you would like to read an excellent interpretation of the results by Maria Muccioli Ph.D, her blogpost at Diabetes Daily is available here. Below the infographic is information from Diabetes Daily about joining the ongoing study.

 

This is a copy of an email I received from Diabetes Daily. Please join the project to let your voice by heard!

Dear Friends,

Want to help with the COVID-19 pandemic? Your data can make the difference!

We have donated our rapid research platform to help leaders respond to the epidemic.

Fill out this 3-minute survey to join the project:

Join the Study Covid Project

Your anonymous insights on symptoms, social distancing, masks, the economy, and more will be analyzed by a talented group of epidemiologists and public health experts and shared publicly.

Who can participate? 

The project is open to everyone 18+ living in the USA.

How will my data be used?

Your data will only be used for research purposes. You will not receive any marketing messages. All personally identifiable information will be removed prior to the sharing or publishing of any data.

Who is behind the project?

Thrivable, the organization that created Diabetes Daily, has donated its rapid research platform to this project. The project is led by a group of leaders in public health who have important questions about your attitudes and behaviors around COVID-19. You can see the team here.

Can I share this with family and friends?

Yes! Please share far and wide. You can copy and paste this message to share:

Want to help with the COVID-19 pandemic? Your data can make the difference! Join me and sign up for the Study Covid Project at https://www.StudyCovid.org.

Best,

The Diabetes Daily Team

Coronavirus: Social Isolation in the Desert

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I am sitting outside this evening in Arizona basking in blue skies, mountain views, and warm temperatures. I am feeling good and it seems that my arthritis has gone on hiatus. Diabetes is just being diabetes and I am doing my best to ignore it and leave the work up to Control IQ. The coyotes are howling and I hope it is with joy at the day and not for a recent bunny kill. Doves are cooing and a pair of Gambels quail is investigating my geranium pot as a potential nesting spot. Weird crane flies are everywhere with their whispy daddy long-leg look. A pair of mallards has determined that our swimming pool might be their new home. 

But coronavirus is out there. On paper I am at high risk for a poor outcome should I get sick with the virus. 

I wrote the above paragraphs 10 days ago when I was still living in the world of social distancing as a snow day. I knew that things weren’t a holiday but I wasn’t tired of being alone and wasn’t yet worrying about how diabetes would impact my prognosis in the coronavirus epidemic. I wasn’t yet worrying about how horrible it will be to get critically and painfully ill. (I haven’t even had the flu since the 1970’s.) I wasn’t yet worrying about how one of my sons will survive financially when he and his wife both need to work but have no childcare. I wasn’t yet worrying about the endgame of most of the country staying at home. 

I didn’t have a pit in my stomach yet.

I do now. Not every minute of every day but often at 2:30am for several hours. Not all day every day but a lot of the time. It usually disappears when I get to FaceTime with my children and grandchildren. I normally spend a lot of time alone and social distancing is not difficult for me. It allows me to go on solitary hikes in the desert and spend hours every afternoon doing computer jigsaw puzzles. Interestingly I have not been able to find a new Netflix or Amazon Prime series to binge on and I have very little concentration for TV. But other things keep me entertained.

But the pit in my stomach and the stress of the unknown is never far away.

When will it be safe to return to normal? Has our world forever changed and what was normal will never be part of our lives again? Does our country have the leadership to weather this crisis? Will we have enough healthy medical professionals to care for us through this crisis. Will an economic recession destroy as many people as the virus? 

Nothing that I am thinking or feeling is different from most other Americans.

I am writing this post from a life of privilege. My husband and I are comfortable at our Arizona home and we are able to walk around the neighborhood, hike in the nearby desert, and even play golf touching nothing communal on the course. We have enough food to last for several weeks. He has a job and is able to work remotely. I have several months worth of insulin in the refrigerator and diabetes supplies in the closet.

But I know that I am ill-prepared diabetes-wise should I get sick. My husband knows nothing about my pump and CGM. I am not sure that it matters much. If I am too sick to minimally care for my diabetes, I should be in the hospital. If I am hospitalized with coronavirus, my husband will not be able to visit or care for me. Plus he would also likely be sick since we are living in the same house and sleeping in the same bed. There is a good discussion on TuDiabetes about a diabetes checklist for the hospital. I think it is unreasonable to think that my pump and CGM would be supported in a coronavirus crisis, but I like the idea of a file card screaming that I have Type 1 diabetes and require a long-acting insulin. Now that I am a senior, doctors tend to not understand that while I have a lot in common with people with Type 2, I am different and will quickly die without insulin. 

Good things in my life: My husband and I are together and I know that he will take care of me to the best of his ability. I am able to FaceTime with my children and grandchildren. I love them and they love me. We have started a family blog and are sharing words, photos, and videos. My fitness instructor in Arizona is doing a MWF class live on Zoom. My yoga instructor in Minnesota is doing classes twice a week on YouTube. I have a diabetes online world with young and old friends alike. I have friends in Arizona and Minnesota who keep in touch. My husband and I are working hard to use our food efficiently and are varying meat and meatless dinners. Although it may be a blood sugar bomb, we are having French Toast for dinner tonight. Thick white buttermilk bread with lots of eggs, milk, and syrup.

Thick white buttermilk bread with lots of eggs, milk, butter, and syrup. 

A definite good thing.

Bright yellow brittle bush blooms with a bee (yikes!)

Mallard lovebirds at my pool.

A paint with water picture by my 2-year old granddaughter.

Six Weeks: More Thoughts on Control IQ

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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

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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.

Diabetes Tech: Moving into the Future

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2020 has brought long-awaited changes to my life with diabetes. I am using my second Dexcom G6 sensor and so far it has been fabulous. Of course there is something quite pitiful that a diabetes device is the coolest thing in my life and I am not bragging about a new Tesla or Coach purse. But that’s life with a chronic disease….

Those of us on Medicare are late to the G6 game and you can find tons of reviews online and don’t need a review from me. But I will quickly say that the insertions have been painless and I am seeing more consistent accuracy with G6 than I ever saw with G5. (And I considered G5 to be very good.) Here is an image from Day 9 of my first sensor.

I am thrilled with not having to calibrate the sensor. One, it is not required for accuracy in most cases. Two, it eliminates the constant calibration notifications on my phone, watch, and pump. I calibrated the first sensor twice. On Day 6 it was reading super low in the 50’s when my BG was 110. A calibration quickly brought it back in line without the delays or rebounds common with G5. But the next day all of a sudden the sensor was reading too high and I had to do a reverse calibration of the previous day. The two calibrations essentially cancelled each other out and I wonder if I shouldn’t have done the first one. To be determined as I gain more experience….

If my first two sensors are a valid test, I can say without doubt that Dexcom G6 is an improvement over G5. But the biggest change in my diabetes tech life is….

Basal IQ.

As described on the Tandem Diabetes provider website: “Basal-IQ technology uses a simple linear regression algorithm that uses Dexcom G6 CGM values to predict glucose levels 30 minutes ahead based on 3 of the last 4 consecutive CGM readings. If the glucose level is predicted to be less than 80 mg/dL, or if a CGM reading falls below 70 mg/dL, insulin delivery is suspended. Insulin delivery resumes as soon as sensor glucose values begin to rise.”

For many years I used temporary basal rates of zero to head off lows. But frankly although it was a helpful technique, it didn’t always work great. The insulin suspension took too long to work and often resulted in highs later on. The difference between my attempts at manipulating insulin and Basal IQ is that the Tandem pump suspends insulin predictively. It is smarter than I am. I am smart, but Basal IQ is smarter.

I have been using Basal IQ for 2 weeks and there is no doubt that I have had fewer lows. I have had a few nights where I had no Dexcom alarms for lows. For me that is monumental. But in typical diabetes fashion I have had a few nights with moderate highs that repeated boluses are slow to bring down. There is some comfort in knowing that I can bolus more aggressively than in the past because Basal IQ will ameliorate (but not necessarily prevent) the inevitable resulting lows.

One thing I like about Basal IQ is that I can chose no notifications when it turns on and off. I am a poster child for alarm fatigue with my diabetes devices. Basal IQ prevents a lot of my lows resulting in few alerts from the Dexcom app. But I still rarely have a night with no diabetes issues and either need to completely stop snacks in the evening or raise my high alarm threshold.

I think it is interesting that Basal IQ can be considered to be a basal test. One might argue that if you repeatedly have a 3-hour period overnight where your basal is suspended for almost the whole time, your basal rates might be too high. Or if you have a period of sustained highs and never have suspended insulin through another period, maybe your rates are too low. I assume that somewhere in between is the “sweet basal spot.” But maybe not — because I have always suspected that there is not a perfect basal profile that works for every day. Remember the Diatribe 42 factors that affect blood sugar. 

In the online community, especially the Seniors with Sensors group on Facebook, there are many seniors doing really well with their diabetes. The definition of “really well” differs from person to person. But at my age if you’re satisfied with your care, your D-numbers, and have a supportive doctor, I think you’re doing really well. Some seniors using the Tandem pump and Dexcom G6 are thrilled with Basal IQ and appreciate help avoiding lows. I am mostly in that group. Others are frustrated with post-insulin-suspension highs or are convinced that a sensor-augmented insulin delivery system can’t match their manual results. A lot of seniors are going to have a hard time giving up manual control of their diabetes and their concerns are valid. In contrast the diabetes world has a whole generation of CGM users growing up not knowing anything other than complete trust in their sensors. And soon that will be the norm, not we old folks who used pee-strips, urine-testing chemistry sets, and 15 BG meter tests a day.

Tandem’s Control IQ has been approved by the FDA and will soon be available via a software update to all of us with in-warranty Tandem X2 pumps. Even those of us on Medicare! My A1c and average BG will rise if I use Control IQ. Will the reduced mental burden be worth it? Statistics and my endo might argue that I would be healthier and living with less risk if my A1c increased. Am I old enough that I should be modifying my targets and treatment? Do current risk studies for seniors with Type 1 diabetes reflect the adoption of CGM technology that protects us from most severe lows? How good does my diabetes control have to be? The questions go on and on.

I know people online who will never adopt new technology that they don’t trust or that might raise their A1c’s out of the low 5’s. I know others who are always open to trying new things and are willing to take some risks on the path to diabetes nirvana. And for sure there are people who have struggled every day of their diabetes lives and are willing to let smart technology take control of their physical and mental health. I am not sure exactly where I stand on these decisions and know that I will be writing more in the future about Control IQ.

At the moment, I am still learning Basal IQ and feel my D-life has been improved with this technology and the Dexcom G6. One roadblock that might prevent me from updating my pump to Control IQ is that I will not have the option to go back to just Basal IQ. They are completely different pump software configurations and algorithms. By going with Control IQ I am limited to the programmed target blood glucose levels for highs and they are higher than I currently target. Basal IQ just addresses lows and leaves highs to me. Does it matter? I don’t know and plan to stay on the sidelines a while before making the commitment to change.

If you are considering Control IQ, I suggest that you listen to this Diabetes-Connections podcast where Stacey Simms interviews Molly McElwey Malloy from Tandem. After listening to the podcast I was comfortable that Control IQ would be good for me. But I know I need to learn more before committing. This coming Wednesday (1/15/20) Tandem will have a live presentation on Facebook explaining Control IQ and answering listener questions. I don’t have a specific link but here is a screenshot of the email i received from Tandem. For sure you’ll hear more from me in the future about Control IQ–my opinions and those of my fellow seniors with diabetes.

 

Diabetes Ratings for Restaurants?

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I think that there should be diabetes ratings for restaurants.

I don’t mean that they would be rated on how “healthy” their food is or even if the food is high carb. I am mostly smart enough to identify cr*p food and make my choices accordingly. I want restaurant chains to be evaluated for the accuracy of the carb counts in their nutrition information. And maybe I want to add glycemic load to that evaluation. 

I want to know if I bolus my insulin based on the posted carb count of the food I choose, do I have a chance in h*ll of having a good blood sugar result?

Based on my experiences this week and actually over several years, the first failing grades I would give would be to McDonald’s and Panera Bread.

I don’t eat out very often because except for eggs, sausage, bacon, and chicken, I rarely find things to order that aren’t going to trash my blood sugar. Even scrambled eggs aren’t safe because some restaurants add pancake batter to the eggs to make them fluffy. Sometimes the problem is that it is difficult to pre-bolus my insulin if I have to drive to the restaurant. If my blood sugar is slightly low, normal, or even slightly elevated, I believe it is dangerous to take insulin early and run the risk, albeit slight, of an accident, car trouble, or traffic jam that delays my access to food. I always have glucose tabs with me, but who wants to ruin a meal with an appetizer of cherry-flavored chalk?

On Sunday I went to McDonald’s with my 6-year old granddaughter on the way to a theater event. I planned my insulin for 1/2 of a bun with my quarter-pound hamburger. No cheese or condiments. Just meat and 1/2 of a bun. I pre-bolused 1/2 unit of insulin at home and extended another 1 unit over 20 minutes. When we got to the restaurant I bolused for 30 grams of carbs for 1/2 of a bun and didn’t subtract the 1-1/2 units of insulin on board. The nutrition info shows a Quarter Pounder with the whole bun having a total of 35g carb. So 1/2 of a bun bolused for double the carbs with an extra 1-1/2 units of insulin should have worked. Nope. Within 20 minutes I had double-up arrows in the high 100’s and reached the high-200’s at the peak. I frankly think that there is no food that hits my blood sugar faster than McDonald’s hamburger buns. Well, except for the hamburger buns at In & Out Burger….

I blame myself somewhat for this scenario because it happens every time. Every single time. But once in a while I just want to eat a hamburger with 1/2 of a bun. Actually I would love to eat a hamburger with a whole bun…. So McDonald’s gets an F in terms of being diabetic-friendly because the BG impact of its hamburger buns isn’t close to the posted carb count.

And I get an F because I am stubborn and stupid enough to think I can ever succeed at eating there.

I met a diabetes friend at a local Panera Bread restaurant for lunch yesterday. I get more frustrated with Panera than any other restaurant probably because it pretends to be “healthy.” I can’t count the times that I have bolused based on the carb counts provided and had horrendous blood sugars. My game plan is to at least double the carb count on their website and pre-bolus as much as possible. I keep looking for one food besides Caesar salad that I can eat there without bad BG results. I haven’t found it yet. Yesterday I had a bowl of Ten Vegetable soup. The posted carb count was 16 grams. I bolused for 35 grams in addition to a 200% temp basal that I had started 30 minutes earlier. 

I didn’t take a screen shot of the 158 double-arrows up 20 minutes into the meal, but here is a watch screenshot an hour later. Interestingly when I see a photo of the soup on the Panera website, it shows chunks of colorful vegetables. Mine must have been the gruel at the bottom of the pot because there were no chunks of vegetables and it really wasn’t very good. Regardless it was another failed experience at Panera and I really wonder how the nutrition info on their website is determined. Maybe monkeys playing roulette….

Panera’s salads can also be minefields because when I last checked, the only salad dressing without sugar or honey is the Caesar dressing. I suspect that my best menu choice would have been a Caesar salad with chicken and no croutons. However, I am coming off a recent bad experience of being sick after a salad at a local restaurant. Was it the shrimp or lettuce? Not sure, but I am avoiding restaurant salads for the moment.

In my book, Panera Bread gets an F-rating for the reliability of the carb counts. Once again I get an F by continuing to think I can eat any of their food. I wonder if I would do better by just having a sandwich, savoring every bite, and just accepting the high BG despite a magnum bolus. Or maybe just having iced tea and not eating.

But the rumor is that carbs float in the air at restaurants and your blood sugar is going to spike no matter what…..

Are these restaurant experiences the end of the world? No. My blood sugar eventually returned to a good range. The major frustration was trying to do diabetes right by considering carb counts and taking extra insulin and still failing miserably.

Oh well, another imperfect day in my life with diabetes.