Alicia: UnLeashed! December 2017 monthly article

Many, if not all, of you have read Gary’s review of the Medtronic 670G hybrid closed loop insulin pump system. A great many of you may even have attended our live presentation on the subject. (Allow me to pause to thank you all for your overwhelming response!) So you may be thinking, I don’t need another review of the 670G. To which I say, good, I have no intention of reviewing the device.

We already know it has a short rudder that takes a long time to make changes for life’s icebergs. We already know that it sets targets higher than someone with tight control finds acceptable. And we already know that it requires a lot of finger sticks to satisfy the demands of auto-mode. We are also happy to see that, in general, it has proven to help increase time in range and improve average blood sugar in the average user. So you might ask, what more is there to say?

As I sat down to write this article I kept thinking to myself, what hasn’t been said? What really matters about this thing? What really impacted me? Was it really the alarming rate at which I went through test strips due to having to test 6 or more times a day to maintain the system? Was it really the fatigue of being woken up almost nightly by one alert or another? Was it the frustration of the system not frankly stating there was a sensor error, instead just repeatedly asking for blood sugar after blood sugar? Was it the freedom of eating a meal and not thinking about extending boluses? Was it going through the month and not thinking about planning ahead to temp basal up for the coming hormonal swing? What was it REALLY that made being on this system worth writing about once more? Why, as I put my thoughts to paper do I have a lump in my throat? Why, when I put my usual pump back on, did I feel so much peace and relief and more like myself? My answer was alarming to me.

This system requires the user to adjust how they think about their diabetes management; it requires that they give over a good measure of control and forethought to “trust the system”. For me, and I would wager to guess, many of you, this is not a healthy change of mindset. It is, in fact, rather alarming and disheartening.

By all standard measures I had a highly successful 6 weeks on the Medtronic 670G system. My first week on manual mode for the system to “learn” from my sensor readings was uneventful. I’m a skilled and knowledgeable person who has been using a pump for close to 10 years and has used every pump currently on the market. I have even been a Medtronic pump user for more than 8 years. If you read Gary’s review I can even tell you that I would not be an ideal candidate for the 670G. I’m a bit of a control freak, I keep pretty tight control (through sound settings and application of knowledge not from hyper vigilant management or restriction of lifestyle). I also get alert fatigue easily and loath anything that interrupts my sleep. I lead a pretty dynamic lifestyle with a mix of fast paced office work, interval training workouts, and a 7 month old baby at home.( Icebergs ahead captain!) I also have a remarkably wide variation in my basal needs, with my early morning needs being nearly three times my mid afternoon needs. So I went in with the expectation of the system simply not being able to keep up with my needs. However I spent more than  90% of my first week in automode, I spent more than 80% of my day in range, and even challenged the system with a steak house dinner and a trip to Disney World. It handled the challenges admirably and I did not get kicked out of automode as I had expected I would.

However, even in this time of success the mindset changes required were already taking hold and something inside me balked at the change. The very first day I watched my CGM to see what my blood sugar would do after a very common meal. At an hour after the meal the usual rise was not there and I was rather shocked, was it possible that this machine was doing something I could not; reducing my breakfast postprandial spike?! Very predictably I spike a bit higher than I’d like after any breakfast not followed by physical activity so I instinctively check to see if a correction is needed, or if I should go ahead and take the opportunity to take a walk to help things settle down. So, pleased with the system, I went about my morning; until about an hour later I had a headache. I checked my blood sugar to see a far larger spike than I was accustomed to at a time I was completely unaccustomed to! The system had cut my basal insulin delivery as my meal bolus began to drop my blood sugar. It was as if the system could not recognize the difference between a drop from 180 to a target of 120, and a drop from 100 to a hypo. And so, instead of the reliable rise of a meal I was dealing with an unpredictable rise due to system basal adjustments, over which I had no control and of which I had no notice.

Predictability is what makes diabetes manageable, it is why we basal test, and make setting adjustments. Predictability is the holy grail of life with diabetes! To be able to take insulin and predict its action in our bodies is the difference between sleeping soundly at night and staying awake terrified of what the night might bring! Predictability is the reason we learn so much about ourselves, our foods, our medications, our therapies, and our technologies. But the 670 G system was altering a decade of learned predictability, it was extremely unsettling. I sighed and told myself that in order to make this system work I was going to have to trust the system. Not myself, not my knowledge of insulin action, not my intuition, not my skills and habits, but the system. My heart broke a bit.

As a person with diabetes I have always identified as something of a warrior. I strap on my armor of knowledge and my sword of insulin and wade into the fray each day to do battle with the dragon of diabetes. Most days I emerge triumphant with diabetes obediently brought to heel. Some days I stride into battle and get a bit singed and diabetes chuckles as it slinks off to its den awaiting the next match. But this system asked me to take off my armor and trust a system that wielded a sword for me and left me waiting to see how the battle would turn out. For me, that is not a good feeling. That is the feeling I had when I was first diagnosed and doctors kept telling me “don’t worry about that” whenever I asked questions about different insulin regimens, or how fats and proteins effected my blood sugar, or how to deal with the rise every time my allergies got bad. They were asking me to trust their system, and it failed me. Being asked to trust a system that does not give me a say, that does not take my goals into account has never lead to an improvement in my life.

In my second and third weeks of use I encountered repeated requests for a blood sugar value. Repeated requests to calibrate the sensor, or repeated requests for blood sugars to continue auto mode. I would dutifully enter only to be prompted again 15 minutes later, and again, and again. This brought me to the second painful mind change to succeed with this system. I had to trade proactive management and thinking with reactive obedience to the needs of the system, with no particular means of predicting its needs. One night with a steak house dinner I got no automode max basal alert, another night with chinese food I did, and even with no high fat meal to blame I would max out. The majority of afternoons my blood sugar was in the 100s when it was time to leave work, so I would have to eat carbs to maintain a blood sugar range that I felt safe to make the 90 minute drive home. I had to go from a person who would pause to think ahead in their day, to get ahead of the dragon’s next move, to being a person who stood at the ready to jump when the system said jump. I had to be at the beck and call of a system that had asked for my trust but was not proving worthy. Even the sensor errors were not being honest with me. In pumps past this would have been called a sensor error, now it is disguised behind requests for blood sugars and explained by customer service as the system providing safety by ensuring proper sensor communication. How do I trust a system that does not call a sensor error a sensor error?

Pulling the reports for numerical proof of how effective my month of automode time on 670G had been showed little to encourage me. My over all time in auto mode was 76%, having dropped from over 90. My average blood sugar, standard of deviation and time in range showed no statistical difference. My total insulin use increased and my basal percentage increased dramatically.I did not expect much difference in this area, what I did expect was to feel better about my diabetes management. But for a month of my life I was not a warrior, leading diabetes by the nose. I was not someone who knew what was coming and how I was going to deal with it. For a month I was frayed nerves, beaten down by beeps and  just trying to work the system.

This worries me. Too often people with diabetes feel like they are just a number, that their health care providers think that they just aren’t doing as they are told. Too often people with diabetes are entirely right! This system is being strongly recommended by a lot of endocrinologists and I have to wonder how many of them see their patients as people in need of education, support and empowerment? Do they see the 670 G as something that will help their patients as people, or as a tool that will make their jobs as prescribers easier because the patient won’t need as much education and day to day care to achieve improved control?

But without that education and empowerment where are we when the system fails?! a terrifying thought.

I started my diabetes journey feeling powerless, forced to trust a flawed system that just accused me of not being on board with the program and gave me no education or support to know any better. I started my diabetes journey as a person who was worn thin by constantly reacting to what life and diabetes threw at me, just hoping to keep up. After years of learning and growing I am now a confident and empowered warrior who has won far more than she has lost and wears what battle scars she has with pride that what has not killed me will continue to make me stronger!  I am a forward thinking individual with a take charge attitude that goes far beyond my disease management. Sorry 670G, but I’m not going back!

The media hyped this system as something that would “Change the way people think about life with diabetes” I think they’re right, but I’m not sure that is a good thing.