Medicare, Dexcom, and Test Strips 2022

It was a wonderful day when Dexcom G6 was approved without the requirement for daily calibrations. One less chore in my diabetes life and fewer alarms interrupting my day. But unfortunately for many of us seniors, the labeling of Dexcom as therapeutic and non-adjunctive** has made it more difficult to receive Medicare-reimbursed test strips or at least the test strips of our choice. 

** Per CMS Policy Article A52464:  “A therapeutic or non-adjunctive CGM can be used to make treatment decisions without the need for a stand-alone BGM to confirm testing results.”

Like everything with Medicare, people are having totally different experiences with the test strip problem. Some seniors on Advantage Plans are able to get test strips in addition to CGM with no problem. A few people on Facebook claim to get coverage for 3 strips a day (the Medicare allowance for insulin users) from their pharmacy because the doctor wrote the prescription saying that the strips were for calibrating their Dexcom. Others have had no success getting pharmacy coverage for strips regardless of what the prescription specifies. I have read many times our Medicare CGM suppliers are required to provide a meter and I recently got a meter and strips from Solara. But it was not the meter and strips of my choice.

I started this blogpost ten days ago writing that I could find no CMS document outlining the exact guidelines for test strip coverage. All of my info was from word-of-mouth on diabetes social media. Then a few days ago a Facebook friend posted a link to Glucose Monitor – Policy Article A52464C as updated on 4/7/22. Finally for better or worse a clear delineation of the policy.

Some of the History

When Dexcom began providing Dexcom G5 to Medicare recipients in 2017, we were shipped a blood glucose meter and test strips packaged with our monthly sensor allowance. What was amazing was that Dexcom picked a high quality meter system (Contour Next by Bayer) for Medicare recipients rather than the cheapest kid on the block. At that point Contour Next was rated as the most accurate meter by the Diabetes Technological Society (DTS).

Meanwhile some pharmacies quit providing test strips to seniors on CGM due to Medicare denying payment because we were getting test strips from Dexcom. Fast forward to Dexcom G6 when Dexcom quit being a Medicare distributor and moved us to Walgreens and online DME suppliers. All of a sudden many of us were no longer getting test strips. It wasn’t a big deal to me because I had lots of extra strips that I used well past their expiration dates. Only now have I run out of those strips and need to investigate my alternatives.

The Present–My Interpretation

Despite the different experiences of Medicare recipients in getting test strip coverage along with CGM coverage, Glucose Monitor – Policy Article A52464C clearly outlines the policy. (Please note that Advantage Plans are Medicare benefits administered by private companies and can have different rules than Medicare. Similarly people with TRICARE and retiree plans can have different benefits. I am writing about Basic Medicare with or without a Supplement Plan.)

As stated above, Dexcom is labeled as a therapeutic and non-adjunctive CGM. The test strip policy is: 

“For non-adjunctive CGMs, the supply allowance (K0553) also includes a home BGM and related supplies (test strips, lancets, lancing device, calibration solution, and batteries), if necessary. Supplies or accessories billed separately will be denied as unbundling.”

So yes, you can get test strips under Medicare as part of your CGM supplies. The crucial part of this policy is the mention of supplies billed separately being denied because of being “unbundled.”

Bundled versus unbundled. Bundled is when my CGM DME supplier provides me with a meter and strips as part of my Dexcom sensor order. Those test strips are covered by Medicare. Unbundled is when I try to get test strips from my pharmacy. Those test strips will be denied. Unfortunately to carry this further, bundled is when my CGM supplier sends me a cheap meter of its choice. Unbundled and denied by Medicare are strips for my highly rated Contour Next meter. 

I do not have the knowledge to address the policy for Medtronic CGM users. Those sensors are considered adjunctive and it looks to me that meters and strips are not part of their bundle. So I wonder if Medtronic users can still get test strips at the pharmacy??? “For adjunctive CGMs, the supply allowance (A4238) encompasses all items necessary for the use of the device and includes but is not limited to, CGM sensors and transmitters. Separate billing of CGM sensors and transmitters will be denied as unbundling.” I also do not have experience with Libre and Eversense systems.

My Choices and My Experience

I don’t use a lot of test strips compared to pre-CGM days. Most of my testing is on Day 1 of new sensors when I consistently have erratic results and lots of false lows. I would estimate that I use 7-10 strips per sensor and I’ll call that 25 strips per month.

One choice is to keep using Contour Next and pay out of pocket. That is not as horrible as it sounds because Walmart and Amazon sell Contour Next strips labeled Over-The-Counter for $26.58 for 70 strips ($0.38/strip). Walmart also sells an online bundle of 200 strips for $54.99 ($0.27/strip). If I use 25 strips/month and thus about 300/year, I can get by on $81-$114 annually. I can afford that but not all people can.

A second choice is to use the Omnis Health Embrace meter and strips provided by Solara, my DME supplier. The upside: this choice has no out-of-pocket cost. The downside: did I mention that it is a Talking Meter? Fortunately I have good eyesight and don’t need a talking meter. But if I turn off the talking which is quite obnoxious, I get loud beeps that are equally obnoxious. Two other negatives are that the meter must be turned on and off and the strips are difficult to insert. Plus this meter did not pass DTS’s benchmark tests.

A third choice is to buy a cheap ReliOn meter system from Walmart. In the original DTS study, there was a Walmart meter that was rated highly and passed the benchmark tests. Walmart ReliOn Confirm Micro. When I go to the Walmart website, I can find the ReliOn Confirm Micro BG test strips but I cannot find the meter. So it is obviously not in production. About two months ago I purchased a ReliOn Premier Compact meter that included 50 Premier test strips for $19.88. My first two concurrent tests were 100 and 130. For me the most important accuracy test for a BG meter is repeatability. Those two tests were too far apart for me to have confidence in the meter and strips. It is now my fountain pop tester.

A fourth choice is that I bought a CVS Advantage meter and strips that were highly rated in the DTS study. So far the results have seemed reasonable and the OOP costs for strips are less than for Contour Next. But not a lot less. 

I could go forever trying other meters and strips and I am not sure that there would be a definitive or right answer.

Interestingly yesterday morning, I did a bunch of BG tests, each with a new fingerpick of blood. The noisy Embrace meter tested 102-102 on tests two minutes apart. Repeatability: Surprisingly great. Then I used the CVS meter and got 107-118. Not exactly the same but meanwhile my Dexcom went 109-116. And then the Contour Next was 80-82. Repeatability great, but the numbers were totally out of the ballpark from the other meters and my sensor.

Today I did similar tests. Embrace meter 114-115. CVS 114-112. Contour Next 106-105. Dexcom sensor 134.

So what does this mean and what should I do?

I have no idea.

All I know is that according to a common saying:  “A man with a watch knows what time it is. A man with two watches is never sure.”

Along that line:  A woman with one meter knows her blood glucose. A woman with a CGM and three meters doesn’t have a clue.

*******

TBD what I decide to do about test strips. I have a few months worth of Contour Next and CVS strips. I will continue to use the ReliOn strips for testing Diet Coke. But I am flummoxed that the Contour Next readings were significantly lower on the first tests than my Dexcom and the other meters and moderately lower on the second tests. And the free Embrace meter is being surprisingly consistent. 

When a Medicare Supplier Makes a Mistake

There is a nursery rhyme about going to St. Ives in which there are seven wives, seven sacks, seven cats, etc.

As I was going to St. Ives,

I met a man with seven wives

Each wife had seven sacks

Each sack had seven cats

Each cat had seven kits:

Kits, cats, sacks, and wives

How many were there going to St. Ives?

On Saturday I received a 90-day supply of Dexcom sensors from my Medicare supplier. My order should have been 1 box containing 3 boxes of Dexcom sensors with each Dexcom box containing 3 sensors. 9 sensors. Imagine my surprise when there were 3 boxes on my front porch. Each with 3 boxes of Dexcom sensors. And each box containing 3 sensors. So 27 sensors instead of the 9 sensors required for 90 days.

I called my supplier this morning and had several levels of customer service reps telling me that I should have received 3 boxes of sensors. No one seemed to understand what I was saying. I knew that I could have kept these sensors and no one would have been the wiser. But I am an honest person and even with hoarding, I don’t need 27 sensors! I would have happily shared the extra sensors with D-friends, but it would have been Medicare fraud.

Talking to my supplier I tried to reword the issue by distinguishing brown shipping cartons from boxes of sensors. The first agent still didn’t have a clue. But I finally convinced the next agent that I needed to return some of these sensors. No, I didn’t need 1 shipping label. I needed 2 return labels. That will require another level of customer service. But didn’t I need to keep 3 boxes of sensors for the next 3 months? Yes, I do. But I don’t need the extra 18 sensors contained in the other 2 cartons.

if I am lucky, tomorrow I will receive by email two return shipping labels.

As I received a shipment on my front porch,

There were three cartons

Each carton contained three Dexcom boxes

Each box contained three G6 sensors

Cartons, boxes, sensors:

How many sensors do I need?

I think that the answer is 9.

1 brown carton containing 3 Dexcom boxes of 3 sensors….

And yes, this is a #1stWorldProblem blogpost.

Control IQ: Like Gerald I Have Tried!

I probably write about Control IQ more often than I should. Some people with Tandem pumps love it and others hate it. I never love it but I often appreciate the benefits of a computer algorithm helping me out with my diabetes. Unfortunately I sometimes think that Control IQ  sabotages my D-efforts more than it helps me. In general I am frustrated with the Tandem algorithm because I want different ranges and averages than the software targets. Instead of making my diabetes easier, Control IQ often just gives me another indecipherable variable in figuring out the beast that is my diabetes.

After many marathon negotiations with the Control IQ gods, I have reached a compromise where I turn Control IQ off during the day and rely on it overnight. Fortunately Tandem makes it easy to turn Control IQ on and off. The only glitch is that if you use Sleep Mode, you have to turn it back on when you resume Control IQ. Sleep will not restart automatically even if you have a schedule. 

I use Control IQ during the night because it is extremely effective in preventing lows. I am willing to be responsible for monitoring lows in the daytime but have accepted that somewhat higher numbers during the night keep me safer although I chafe at some of those numbers. Remember that my endo says I am old enough that I don’t need to worry about complications 20 years from now….

I have used Control IQ for over a year and a half. I have accepted an average BG between 112 and 120. What I can’t deal with is Control IQ suspending my insulin when my BG is flatlined at 100. I am amazed watching my BG tracings throughout the day without Control IQ. I can flatline for hours at a time with minor up-and-down waves. But add Control IQ to the mix and I have insulin suspensions as my BG drops below 110. The pump screams that I will drop below 70 but without Control IQ it usually stabilizes in the 80’s or 90’s. Then future highs from those suspensions are another unknown as I navigate my next meal or my next couple hours of D-existence. Ups and downs and more ups and downs. 

Many Control IQ gurus would claim that I just have bad pump settings.

Maybe. Probably. But maybe not.

I have tried. I have tried and tried. And tried….to get agile and effective settings that worked yesterday, will work today, and will be great tomorrow. I have not succeeded. 

I have fiddled with my settings more times than I can count. I always come back to the idea that my diabetes philosophy is just at odds with an algorithm that is good at improving the numbers of the “average” population of people with Type 1 but not able to keep up with all of the variables of my diabetes. As a senior my skin and tissue are not as durable as they were in my younger days. Although I change my infusion sets every two days, I can still have a big difference in day-to-day absorption of insulin. I dutifully take the daily aspirin mandated by my internist and sometimes get bruising and bleeding that interfere with insulin. I am better at changing my pump cartridges more often than I used to but still have discernible (but not predictable) differences in insulin action from Day 1 to 4. Heaven only knows how to quantify the variance in what I eat and drink from day to day and how my body reacts.

This stuff is complicated.

I am lucky to have 7 (!) grandchildren and some of my favorite books are the Elephant and Piggie books by Mo Willems. Gerald’s frustration (“Elephants Cannot Dance!“) at not being able to dance is a good reflection of my journey with Control IQ. He is an elephant and elephants just cannot dance. I have type 1 diabetes and I just cannot be as perfect as I would like with Control IQ. 

Although Gerald thinks that he has failed when it comes to dancing, the squirrels and Piggie end up begging him to teach them “The Elephant.” Maybe my journey doesn’t have a bad ending as Gerald ends his dancing book exclaiming “Keep trying! You are getting it!”

Some days I am grumpy about my diabetes software and hardware. But I really have no choice except to….

Keep trying!

And that is what I do.

And This is Why We Struggle

I recently filled out a long diabetes survey where I had to rank the potential benefits of a hybrid artificial pancreas system. One of the choices was a good night’s sleep. I think I rated that as Benefit #2 and I can’t remember what was #1. Probably accuracy of the CGM sensor.

Last night I had proof that a good night’s sleep is hugely important to me and proof that it is occasionally an elusive unicorn.

From the CGM history on my Tandem pump.

7/30/21     12:45am     Out of Range Alert

7/30/21     1:20am       Out of Range Alert

7/30/21     1:20am       Fixed Low Alert

7/30/21     1:20am       Fixed Low Alert

7/30/21     1:45am       Fixed Low Alert

7/30/21     3:40am      Fixed Low Alert

7/30/21     4:35am     Fixed Low Alert

7/30/21     4:40am     Fixed Low Alert

7/30/21      4:45am     Fixed Low Alert

I am not sure how many of those vibrating alerts I slept through and for sure the Out of Range alarms were the result of me sleeping on top of my pump. But I was woken up 7-8 times during the night. My husband probably 3-4 times. At some point I turned off my phone to stop the “Nerd Alert” 55-low alarms.

Last evening we flew from Baltimore, MD to Minneapolis. Several hours waiting at the airport followed by an unpleasant boarding experience and an uncomfortably hot flight. But as always with flying, if you have an equal number of take-offs and landings, it is a good day. But it was still a cr*ppy flying experience with Delta which is normally good for us.

In general Control IQ protects me from most lows and it is rare that I have an overnight like last night. I had several carb-loaded snacks on the plane (there was nothing else to eat) but all of those boluses should have disappeared several hours before I went to bed. At 7:30pm mid-flight I took my 5u nightly Lantus bolus with an insulin pen. (I use the untethered regimen with Control IQ to give my body some insulin that the Tandem pump can’t suspend. It works well. Usually….)  I remember in previous years reading articles indicating that insulin pumps might not deliver insulin correctly while taking off and landing on airplanes. Air pressure issues. Does that affect insulin pens? And my bolus was mid-flight, but probably at 35,000 feet. I have never worried or taken precautions about my pump. Should I have not trusted my pen-bolus?

Our flight landed at 8:30pm and we were home within 30 minutes. A little TV and straight to bed. Here is a photo of my 12-hour pump screen from 10:00pm last night until 10:00am today. The red areas show where my insulin was suspended. As you can see, there were several hours overnight where I was in the 50’s despite hours of getting very little insulin from the pump and eating at least 4 glucose tabs. I actually tested with my meter once to confirm that the CGM was correct and it was. I never soared high after all of these suspensions and that is unusual. So the Lantus must have been super-charged. I don’t think that any of the early-evening Novolog pump boluses could have still been active. I am never someone  who thinks that my body occasionally produces insulin. It doesn’t. So something was definitely awry last night.

The two hours from 8:00am to 10:00am reflect a typical breakfast bolus for 20 carbs (oatmeal, almond milk, and chia seeds) followed by a 3-mile walk. That insulin suspension is expected and common. It is the previous 10 hours that is crazy.

I had a bad night’s sleep and awoke today tired and achy. But when I got up, I was mostly fine and I had a good day with no fatigue. But gosh darn-it! It is horrible to be awakened over and over again by my diabetes devices. Or is it my diabetes devices communicating the craziness of my diabetes? Either way, I hope that future generations of D-tech, improved artificial pancreas algorithms, and faster insulin products can eliminate nights like last night.

I am thinking that I should move “a good night’s sleep” to the #1 position in my diabetes surveys.

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

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….

Going Untethered with Control IQ

I activated Control IQ on my Tandem X2 pump in late January. After two weeks I wrote a blogpost sharing my goals for the system:

“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.”

A month later I wrote another post indicating that I mostly liked Control IQ because of the protection from low blood sugars. At the same time I shared that I was still struggling to dial in settings with my major problem being high blood sugars after long insulin suspensions.

“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.”

Over the next 6 months I changed pump settings more times than I can count. Stronger basals, weaker basals. Stronger insulin sensitivity factors, weaker sensitivity factors. Stronger carb ratios, weaker carb ratios. I had easily accepted that eliminating most low blood sugars would raise my average blood sugar and I was somewhat okay with that. I never considered turning off Control IQ, but I was frustrated that the system was not close to hands-off for me. My biggest problem continued to be highs after insulin suspensions and random sticky highs. BTW I was using Sleep Mode 24/7 and continue to do so.

In August I started problem-solving again. I found that when I weakened my pump settings, I got fewer suspensions of insulins but lots of stubborn highs. When I used settings that allowed me to achieve my target blood sugar levels, I had long insulin suspensions. I determined that although I really appreciate reductions in basal insulin by Control IQ, I cannot ever be 100% without insulin regardless of my blood sugar level.

I don’t need a lot of insulin but I always need some. 

I have a long history of periodically using the untethered regimen (pump + part of basal injected) successfully. It made sense to me that having some insulin on board that Control IQ couldn’t adjust might help me achieve my goals. After a few days of experimenting with how much basal to inject, I settled on 30%. I began taking 4 units of Basaglar (Lantus equivalent) every evening and reduced my pump basal settings across the board by that amount. Assuming that the Basaglar absorbs evenly over 24 hours (it probably doesn’t), it provides me with 0.17 units of insulin per hour. Minuscule.

After 5 weeks I am amazed at how successful the untethered regimen has been. That little bit of constant insulin has really helped to reduce post-insulin suspension highs and other random BG excursions. Control IQ has power over enough of my basal insulin that it continues to protect me from most lows while helping me attack the highs. Both my average BG and standard deviation are lower. Time in range is higher. The differences in statistics aren’t huge but they are significant.

The additional work of injecting basal is minor and a phone alarm reminds me to take the evening injection. I keep the Basaglar pen in the refrigerator and use a syringe to withdraw insulin because I am more confident about the dose that way. I am not discarding pens after 30 days but will use them until they are empty or there is a noticeable decline in insulin potency. At 4 units per day,  the added expense of a second insulin type is negligible.

I am sure that many of you will argue that I just need to get better pump settings. My experience is that the times of day and the cumulative time of suspended insulin vary greatly from day to day. Am I more active? Is it a new pump cartridge with fresh insulin? Is the infusion site less than optimal? What am I eating? And so on. IMO all of this indicates that “perfect” pump settings are a mirage although I continue to reduce some of my pump basal rates and tweak settings. Right now I am finding the addition of a small amount of injected basal insulin is helping Control IQ do its job better and allowing me to micromanage less. So it is a win in my book.

Is diabetes easy-peasy now? No, but it is easier. Are my numbers perfect? Not really, but they are more manageable. Will I stay with the untethered regimen forever? Probably not.

I am not saying that you should do what I do. We all have different targets and different diabetes. At the same time I encourage you to be creative as you try to optimize your Control IQ experience. Although we can customize many Control IQ settings, we are limited by the fixed behavior of other settings and the slow speed of insulin onset. Sometimes we just need to think outside the box to figure out ways to get the results that we want.

Just another reminder that our diabetes is a constant science experiment….

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. 

Tandem Occlusion Alarms: The Last Post

I started using a Tandem t:slim X2 insulin pump in December 2016 and immediately began having occlusion alarms once or twice a week. I had never had occlusions in 12+ years of pumping with Medtronic and Animas and quickly discovered that the vast majority of these Tandem alarms were false. All I had to do was dismiss the alarm, resume insulin, and go about my day. I can count on one hand the number of times that the occlusions were real and required a cartridge and infusion set change. It takes more than one hand to count the times that I had an embarrassing blaring alarm in awkward situations such as the movies, yoga class, and restaurants.

If you do an online search for Tandem Occlusion Alarms, you will be linked to some of my older blogposts. People still contact me with questions about their occlusion problems and I figured it was time to update my experiences and thoughts.

Although some of my previous blogposts suggested that I had fixed the problem, I never found a permanent solution to false occlusion alarms with some of my X2 pumps. I was fortunate that I wasn’t someone who had multiple alarms a day requiring cartridge and infusion set changes. The alarms were annoying and I mostly learned to live with them. Occasionally I called Tandem out of frustration but after a while they had nothing new to tell me and no real solutions.

If you notice in the last paragraph I say “some of my X2 pumps.” I am on my fifth pump in 3-1/2 years. My first pump had occlusion alarms starting the first week and was eventually replaced due to a failed battery. The second pump did not have a single occlusion alarm during the month that I used it, but the t:button was defective. The third pump had lots of occlusion alarms and was replaced for that reason. The fourth pump had one to two occlusion alarms per week and I gave up on solving the problem. 

But then….

In January 2020 I started using Dexcom G6 and wanted to install the newest Basal IQ update. It was determined that I had one of the older pumps with software that was incompatible with the Basal IQ and Control IQ updates. So I got another replacement pump. Amazingly several months went by with no occlusion alarms. I didn’t change anything in my behavior, cartridge use, or infusion set type. Through luck of the draw I finally had a pump that was not prone to false occlusion alarms. In the last 6+ months I have had 3 occlusion alarms all probably attributable to bunched up tubing during a mealtime bolus. 

I have long believed that some Tandem pumps are more prone to occlusion alarms than others. Is it an overly sensitive sensor or a less than robust motor? I’m not an engineer and have no idea. I have more than once been annoyed by people online being virtuous that they aren’t getting occlusion alarms and that I must be doing something wrong. Some times I felt as though Tandem techs blamed me.

No, maybe it was just the pump.

If you’re dealing with occlusion alarms, the best place to start might be with some of the “best practices” recommended by Tandem support techs and other X2 users on Facebook. Some helped me, some didn’t, and some I refused to do.

Things to try:

  1. Use the case
  2. Don’t carry the pump in your pocket
  3. Keep the tubing outstretched while a bolus is delivering
  4. Change your cartridge every 3 days
  5. Use TruSteel infusion sets
  6. Use insulin types approved for Tandem pumps
  7. Document everything and work with your local rep to get a replacement pump
  8. Just accept occlusion alarms, restart insulin, and move on

I don’t necessarily do all of those things and some of them made no difference in the number of my occlusion alarms. With only one to two alarms a week, I got very good at #8 and just lived with the alarms. I currently wear my pump on my waistband with a Nite Ize clip and use TruSteel infusion sets with Novolog insulin. But that’s what I did with the 3rd and 4th pumps that had lots of occlusion alarms. I dislike the size and weight of the case and don’t use it. I don’t change my cartridge every three days although I change my infusion set every two days. I rarely hold the tubing straight during a bolus.

So I live with a mixture of best practices and bad practices. I used to get a lot of occlusion alarms and now I don’t.

What changed?

The pump.

*********

I hope that this blogpost is my last discussion of occlusion alarms. If you’re interested, here are previous posts on the subject:

https://testguessandgo.com/2017/02/21/a-review-of-the-tandem-tslim-x2/

https://testguessandgo.com/2017/03/20/winning-the-battle-with-tandem-occlusion-alarms/

https://testguessandgo.com/2017/05/24/a-5-month-review-of-the-tandem-tslim-x2/

https://testguessandgo.com/2018/07/26/tandem-occlusion-alarms-an-engineering-experiment/

https://testguessandgo.com/2018/07/30/tandem-occlusion-alarms-crying-uncle/

https://testguessandgo.com/2018/08/07/thank-you-tandem-a-replacement-pump/

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.