DISCLAIMER: THE FOLLOWING INFORMATION IS BASED ON MY PERSONAL EXPERIENCES. SOME OF THE INFORMATION PROVIDED INCLUDES NON-FDA APPROVED TECHNIQUES AND IS NOT ENDORSED BY TANDEM DIABETES. THIS BLOG IS INTENDED TO INFORM HEALTH CARE PROVIDERS OF REAL LIFE TIPS & TRICKS. THIS IS NOT CLINICAL ADVICE. PLEASE DISCUSS ANY QUESTIONS OR IDEAS WITH YOUR PRESCRIBER. ADDED 02/24/2020
I can’t believe it’s already been about six weeks since I started ControlIQ. To be honest, I was excited to give ControlIQ a try, but expected to go back to Loop. To my surprise, I’m completely content with ControlIQ! In fact, I’m still doing much better on ControlIQ than I was on Loop. I am amazed that with some minor tweaks and tricks I’ve achieved optimal time in range for weeks and I’m excited to share my secrets with you!
The most important tips (below) are for both Clinicians and ControlIQ users:
Pattern management post ControlIQ start is so important! Pattern management has been key in my success with the system. I reviewed my patterns and made minor tweaks every few days for the first couple weeks. For example, even in sleep mode I was staying steady all night but waking up around 130 for a bit, so I increased my basal. Or, I noticed I was spiking after dinner, so I tightened my carb ratio. The system will help tackle blood glucose variability, but pattern management is still key for optimizing success.
You may need to adjust insulin settings.My insulin settings are much more aggressive than they were on BasalIQ. I used BasalIQ prior to Loop and ControlIQ, and my carb ratio and sensitivity were significantly less aggressive. I did a lot of micromanaging when I used BasalIQ (temp basals, micro boluses, dosing for rising Dexcom arrows).
Key takeaway: YOU WILL NEED TO MAKE ADJUSTMENTS! PARTICULARLY WITH ENSURING INSULIN SENSITIVITY AND CARB RATIOS MATCH TRUE INSULIN REQUIREMENTS. I FIND THAT A LOT OF SENSITIVITY AND CARB RATIOS AREN’T ACTUALLY AGGRESSIVE ENOUGH.
What are my Other secrets?
Personal profiles. This is a setting I didn’t take advantage of on BasalIQ, where I had one main profile. On ControlIQ, use three! One for typical weekdays, one for weekends with increased basal and carb ratios (I eat out on the weekends) and one for exercise. I use this feature in place of temp basals and it works well.
Prebolusing. This is important. That is all.
No prebolus. Oops. Prebolused a few hours earlier for PIZZA (two slices of homemade- slightly lower fat and carb than typical pizza)
3. Exercise tips. Exercise mode alone did not work well for me, even when activating it a couple hours in advance. Since I follow the same workout routine (45 min of moderate cardio in the morning), it was easy for me to figure out what worked for me. I put on my exercise profile at least 1 hour before working out, with the exercise mode. I leave both on for the duration of my workout and then about 1 hour post workout. This typically keeps me steady! My exercise profile has 40% less basal insulin and sensitivity than my typical profile. I figured this out based on the principle that I reduced my insulin by 30-40% on Loop and when using BasalIQ. Your exercise needs will differ based on your body and type of activity, but worth playing around with different profiles!
4. SLEEPMODE. Sleepmode 24/7 was not recommended to me by Tandem. But, after having success using sleepmode just overnight, I decided to try it 24/7. I was inspired by the “sleeping beauties” in the ControlIQ pivotal trial, and wanted to see if it really made a difference. It has been amazing for me. The more aggressive sleepmode algorithm (to shoot for a 110-120 target) work great with my circumstances and I am fine giving up the hourly autocorrections. Keep in mind, I am adult with minimal hormonal fluctuations, have accurate insulin settings, pretty steady blood glucose (few fluctuations), religiously pre-bolus, accurately enter carbohydrates and will give correction doses if I see myself riding in the 140s-170s. For someone who wants to do minimal work, leaving ControlIQ in its normal mode will work better as the hourly autocorrections might be needed. Please do not try this or anything on this blog without discussing with your prescriber.
SLEEPMODE RESULTS
Sleepmode SUCCESS
It looks like I’ll continue using sleepmode 24/7 for the foreseeable future.
Important remindeRS
If it isn’t magical, then something might be wrong. This system doesn’t take time to get to know you like other commercially available systems. Of course, there is an adjustment period to any new device and it might take you a while to figure out what works. If you are consistently, crazy out of range though, it might not get a lot better… you likely need to make insulin adjustments.
If you are hesitant to start it because your HbA1c is <6.5%, I think you should give it a shot. If anything, it’s kept me at the same HbA1c or lower, with less variability. I haven’t noticed an increase in BGs at all, despite the rise in the BG target.
Again, this blog post was intended for healthcare providers, but if you have diabetes, please do not try anything without approval from your prescriber.
It’s been a while! I had a busy fall finishing up my PhD and started picking up more hours at my diabetes education job. What hasn’t been crazy though is my diabetes management.
For those who have been following my journey, I started DIY Omnipod Loop back in April 2019. It was fantastic. It brought my diabetes management to a level of control I didn’t realize was possible with such little mental burden. But, using a DIY system comes with a few downfalls. Aside from technical glitches and troubleshooting, I felt attached to my phone and my RileyLink device… If I left them in another room a BG disaster started brewing. The battery on my phone was also an issue for a while and dead phone = no working system. I had a lot of skin irritation from the pods, but I knew this may happen eventually from past pod experiences. But one of the biggest issues for me was cost. I was changing my pods every other day, and pods are expensive!!! So when I had the opportunity to give ControlIQ a try through the provider early access program, I jumped on it.
For those who haven’t heard about ControlIQ, here is a pretty quick overview.
Before diving into the nitty gritty, you are probably wondering how I’m actually doing on ControlIQ. It’s been amazing. See below for an overview of the past two weeks:
So how did I get started on ControlIQ? To initiate the software upgrade process, I logged into the upgrade portal using my tconnect username and password. If you don’t have a tconnect account and plan on upgrading, make one ASAP! Then, I had to request a prescription from my endo (or my favorite PharmD- shout to to Diana Isaacs) for the ControlIQ software. Once the prescription was received and processed by Tandem, I had to complete a ~40 minute training with videos and questions. Then, the upgrade code was released. I had to use a computer with the device updater software (found on the Tandem website) installed. It downloaded so quickly and I was ready to go!
The transition from Loop to the tslim was pretty smooth. I used BasalIQ for 72 hours before upgrading to ControlIQ. Switching between pumps sometimes warrants insulin setting adjustments due to differences in insulin delivery mechanisms. I had time to do some basal testing, and made adjustments accordingly. My first few days on ControlIQ were incredibly smooth. It is important to mention that while Looping, I made my sensitivity (ISF) for BG corrections and my carb ratios quite aggressive. I kept them just as aggressive for ControlIQ. See first few days below:
And don’t worry, that one hypo and rebound on December 19th was from human error! That’s right, human error! I gave an accidental 45 min pre-bolus (not suggested) because of distraction and the crock pot stew being boiling hot. The pump helped quite a bit, but I still felt nervous and over treated the hypo. Some cool things to note on the Tconnect report- you can see where I started sleep mode (which is a more aggressive basal adjustment without correction doses). I have loved using sleep mode except when I eat higher fat dinners on the weekends and in those cases, I leave it off. For those nights, I need the hourly correction that the pump gives outside of sleep mode.
Other great news- I SURVIVED THE HOLIDAYS! Take a look at Christmas Eve, Christmas Day (yes, I’m Jewish but my boyfriend’s family celebrates!) and New Years Eve. Wow.
Now here’s where I noticed some trouble my time in range was dropping down to 70 on Friday night through Sunday afternoon (oh no…). So… eating on the weekends… am I miscounting (underestimating) carbs when eating out? Maybe. Or, could I try more aggressive carb ratios and higher basals to counter high fat meals? Yes. Still playing around with it, but it seems to be improving my time in range.
Now let’s take a look at how this did while traveling and countering a time difference (1 hour behind).
Not so bad compared to my usual travel days of rollercoasters. I’ll take it!
But the biggest problem so far has been EXERCISE. I tried exercise mode 2 hours prior to a 45 minute cardio session and went straight down. Currently playing around with another profile for exercise with reduced basals, and simply going back out of ControlIQ and using a 70% temp basal. Will keep you posted!
Wrapping up, here are some of my answers to everyone’s questions…
Insulin duration is fixed at 5 hours. This is not a problem like everyone fears. I find many of my patients have insulin duration times (IOB, or insulin action) that isn’t optimal and can result in stacking insulin. The true insulin curve for aspart/lispro follows a curve over 4.5-6 hours. This fixed insulin duration is non-linear (like previous settings have used) and follows more of a true insulin curve. With essentially 0 hypos on this system, I guarantee this setting will work just fine for most.
Does the system kick you out of ControlIQ mode easily? No! There are no requirements to staying in ControlIQ besides not exceeding your maximum delivery (50% of your total daily dose in a 2 hour window). The only other time you will exit ControlIQ is with more than 20 minutes of Dexcom signal loss and when changing your CGM sensor every 10 days.
But the target BG is fixed at 110/112.5… what if I want a lower range? My range has always been set lower than this. With Loop, I had it set at 85 and saw pretty similar BGs. It isn’t as big of a problem as I expected.
Signal loss? In the training video (required before you can actually upgrade the device), it discusses ways to prevent signal loss. This is key! I’ve followed their tips religiously and kept my CGM sensor and pump on the same side of my body. I keep my pump screen facing away from my body. I’ve experienced little to no signal loss.
Do you have to enter fake carbs? NO. It is not recommended to enter fake carbs. You are able to override and underride all suggested boluses when using ControlIQ, and can give correction boluses as needed. If you find you are giving many correction boluses, your insulin settings may need to be adjusted with your healthcare provider.
Overall, it is KEY to know that the algorithm makes decisions partially off of the pre-programmed basal rates, sensitivity and carb ratios. This significantly differs from the other commercially available automated insulin delivery system. This is a totally different system. Users will experience different issues and figure out different tricks. For now, the magical keys to the system are working with your healthcare team to determine your insulin settings to optimize your results, pre-bolusing!!!, and not tricking the system or rage bolusing. If you let the system do its thing, you will be happier with your results.
It is important to mention my personal diabetes philosophy. I am happy with my self-management outcomes if I achieve the clinical time in range goal of spending >70% time between 70-180 mg/dL, an HbA1c below 7 (most recent HbA1c was yesterday and it was 6.3, during the fall it was 6.5, over the summer it was 6.0 even though Dexcom always predicts about 0.5% higher!), minimal time below 70 and spend limited time thinking about diabetes throughout the day. On both Loop and ControlIQ, I was able to exceed these goals.
I was honored to have the opportunity to meet Bernie Sanders, his crew and 14 other Americans living with/caring for those with type 1 diabetes this past Sunday.
Me and Bernie!The whole crew! Please note- yes the children are taller than me.
How did I get myself onto the Bernie Bus?
Basically, I harassed people on the internet… just kidding! It has always been my dream to meet one of my American heros. Politics aside, Bernie Sanders has always stood up for what is morally right. He was the first politician to come out a couple years ago and say it how it is- the insulin cost crisis in America needs to end. He is one of the few politicians who has reached out to our community to listen to our stories in addition to standing up for affordable insulin.
So, a couple of weeks ago, I found out about Bernie’s Caravan to Canada on social media, and was directed by my KOI Insulin4all friends (shout out to you, Lori!) to contact Quinn Nystrom. Quinn is a bada** insulin advocate, diabetes book author and professional speaker. She has even testified in front of the House Committee about the cost of insulin! I provided Quinn with my story and some personal information, and was told that the Sander’s team was looking for a diverse group of people in need of affordable insulin. She made no promises, and passed my info on to the Sanders team. A week later, I was ECSTATIC to find out that I had been accepted to the trip by the Sanders team! Also, thank you to Quinn, Jillian and the Sanders team for organizing such a once in a lifetime opportunity!
On Sunday, I met everyone in a carpool parking lot in Detroit near the bridge to Canada. I arrived a little early and was interviewed by every major news source you could think of, and I did give them my true feelings about Medicare for All and the insulin cost crisis in America. Eventually, we were directed to get on the bus. A few minutes later, Bernie joined us on the bus. He came straight to the back of the bus where the people/caregivers of diabetes were sitting and shook all of our hands. He sat in the back with the T1D crew who were able to share their stories with him. I sat a little further away from him and was scared to go up to him at first!
Bernie getting on the bus!
Being followed around by the media was nerve wracking, but many of them were friendly young adults who I really enjoyed speaking to! They continued to interview us on the bus when taking breaks from filming Bernie. The ride to Canada took about an hour due to customs… and it was really cool to go through customs with Bernie Sanders at the border!!! Once we got to Windsor, a crowd of Canadians holding up insulin4all signs met us at the pharmacy. Bernie has many Canadian friends for sure! We went right into the pharmacy where multiple camera crews circled in and out and we were able to purchase our insulin.
Inside the pharmacy: Quinn and Bernie speaking about the cost of insulin in the USA. Inside the pharmacy: Me and Bernie. And, yes, this is the picture that was trending on a fake history thread on Reddit.
HOW WERE WE ABLE TO PURCHASE INSULIN IN CANADA?
In Canada, you are able to purchase insulin over the counter and without a prescription. However, pharmacies do not have tons of insulin stocked, so we called our order in ahead of time. Legally, you can purchase up to a three month supply of medication (vague definition) for yourself only over the border (so for me, that was seven vials of Fiasp). When we arrived at the pharmacy, we gave them our names (because we ordered ahead) and they had our insulin ready for us. I did not need to show ID, proof of having diabetes, provide any insurance or prescription information. I was able to purchase the same exact medication for an incredible price cut.
My Fiasp came to a total of $43 per vial. In the US, my insurance is charged $347.67 per vial.
Coming back through customs, we declared all of the insulin we purchased. We had to state it was a three month supply for ourselves. The border agents came onto the bus and checked all of our receipts and looked through some of our insulin bags.
Back inside the pharmacy, everyone had a chance to share their story on camera if they wished while others purchased their insulin. Part of my story is posted below- shout out to Fox News for cutting me short! I also left out WHY I was in particular need of insulin right now. As a young adult who is early in their career, I am likely to switch insurance a couple times throughout the next year which is scary! I may have lapses in coverage or difficulty ordering medications when needed to during times of switching insurance. The Fiasp I was able to purchase will hold me over during those times.
It was really eye-opening to listen to everyone else’s stories. However, the story that struck me the most was of the mother and son duo, Hunter and Kathy Sego.
When Hunter went to college, he started picking up his insulin from the pharmacy. When he realized how expensive it was (over $1,000), he felt like a burden to his parents and started rationing insulin without telling anyone.
This story hit home for me as 43% of the young adults with T1D in my dissertation study reported rationing insulin. Hunter became sick from running his blood sugars consistently higher and suffered in class and on the football field. His mother, Kathy’s, story is also extremely compelling. Being a parent caregiver of a young adult with T1D during the insulin crisis is beyond terrifying. Hugs to Kathy for sharing her story and for being so strong! See below to hear more about their story!
SO what did I actually talk to
bernie about?
First, we chatted about Cleveland and I told him all about my BFF Bekah who I visited the night before in Ann Arbor! But, leave it to me to go up to Bernie and discuss not only my research but other recent studies that show that insulin rationing may be a larger problem than in the study he kept referencing (25%- one statistic from one Yale study). I explained more details about the Yale study and I gave Bernie a couple of research abstracts that describe the potential issue of insulin rationing further, and he put them in his pocket! One may have been my own abstract from some of my dissertation data…
SO WHAT ARE MY TRUE THOUGHTS ON BERNIE SANDERS? What was he like in real life?
The news sources loved asking me the first question question. My answer: I fully support his morals and admire him for standing up for the right thing. In real life, he didn’t raise his voice like he does when he gets political! He was kind and genuine. He listened to our stories. He wants to shine light on how the cost of insulin is actually impacting Americans with diabetes and put an end to it!
What are my True feelings on Medicare for all?
How did my T1D handle all of the Bernie Bus excitement?
Well, thanks to DIY Omnipod Loop, I was able to maintain pretty stable BGs throughout the day! However, I did use the jojo temp override feature (120% of insulin needs, same target, left it on all day) and I ended up using SO MUCH more insulin than usual!!! And yes, some of those carbs were fake to try to get my BG down. It is also interesting that I spiked as soon as I woke up on Sunday morning- couldn’t contain my nerves and excitement! Take a peek below.
Diabetes vs Excitement Diabetes vs Typical Day
So what did I learn through this experience?
First of all, Detroit is actually beautiful, especially when viewing the skyline across the river! Who would have thought?! This Clevelander feels guilty for never giving Detroit a chance. Still, shout out to this video.
Next, I have always been intrigued by becoming more involved in politics in the future. This trip reminded me that I am truly focused on scientific evidence and what I see from the clinical perspective. I kept getting worried as a healthcare provider/researcher to hear (innocent) lay people make statements based off of a statistic from one study, or to explain an aspect of diabetes to the media that isn’t completely true for everyone (with the worry that it would be misinterpreted)- but that’s what I was there to help with and can continue helping with. I’ve personally experienced the media misinterpreting facts I’ve given them before so that may be why I’m worried! Overall, this trip inspired me to think about all of the scientific and clinical evidence and how it can be applied to healthcare policy- not just stated to the media. However, the important, personal insulin crisis stories do need to be continuously shared with the media to continue strong advocacy work.
I also learned that the Canadian insulin situation isn’t all sunshine and rainbows. Many Canadians are worried about Americans coming to Canada to purchase insulin and running out of insulin supply. My wonderful grandparents, who are Canadian citizens (and not US citizens), shared this article with me and expressed their community’s concerns. Other Canadians are still advocating for affordable insulin in Canada, as many Canadians with diabetes have to purchase insulin without insurance coverage. One study by T1 International even found that 19% of Canadians ration insulin. Another scary part is that there is now concern for insulin being taken away from over the counter in Canada due to the influx of Americans coming to purchase it! Canada’s healthcare system has its issues as well, and I’m not sure modeling after their system will solve our insulin crisis completely, but I’m thankful to have purchased affordable insulin in Canada to hold me over right now.
After returning, I also learned about the concerns many diabetes advocates and providers have about the cost of insulin problem being downplayed for those living with type 2 diabetes. We made sure to highlight the issue impacts ALL insulin dependent people with diabetes as over 7.5 million US citizens are insulin dependent, most of whom live with type 2 diabetes. The rationing statistics provided applied to people with all types of diabetes, and when many of us spoke, we made sure to not highlight just type 1 diabetes. This is a crisis for all US citizens living with diabetes.
And lastly, I am beyond inspired by the amazing crew of people with/caring for diabetes on the bus and their bravery speaking up and advocating for what people living with diabetes in the US desperately need! Thank you Bernie Sanders and team for setting this up and advocating with us. #Insulin4All
T1D in the CLE 