Glucose Monitoring

Diabetes at 3.14am

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I stirred in my sleep, registering the blaring red 3.14 on the clock radio beside my bed. Pulling my left arm out from under the covers, I fumbled around for the switch at the base of my bedside lamp. When my desk was finally illuminated in cosy warm white light, I heaved the remainder of my body up from the bed, reaching for my meter and test strips.

This certainly wasn’t the number that I was expecting to see, considering the full 2 unit correction that I had given prior to bedtime for a 10.7. (And in case you’re wondering, I’m only using the OneTouch Verio to deplete my final box of strips…)

I immediately ripped my pump away from it’s resting place inside my inner left pocket, and gave another full correction of 3.3 units for that very uncomfortable number. My frustration was only further fuelling my actions, as I set a 50% basal rate increase for the next two hours on my pump to ensure that this correction insulin did its job.

As I flicked off the lamp and rested my body back onto my bed, I couldn’t get back to sleep. I could feel the heat emulating from my pillow, and flipped it over to the cool side. My whole body felt stuffy, presumably a consequence of the higher blood sugar.

As I lay there, tossing and turning, my mind was quickly consumed with guilt.

I wasn’t happy that it had taken me this long into the night to finally stir in my sleep and check my damn blood sugar. I felt terrible for the fact that I had been sitting there, at that very uncomfortable level, for the better part of five hours. I felt frustration, because a mere two weeks ago I was super insulin sensitive and today I feel like I’m not getting enough.

Second guessing my prior decision in the darkness, I reached for my pump and lowered that 50% temporary basal rate to 30% before clipping it back inside my pants pocket.

Trying to purge those thoughts from my mind, I began thinking about all of the positive things that I am doing in managing my diabetes, reminding myself that numbers like those are isolated occurences nowadays.

If this had happened in the middle of the day, I’d have corrected the high without giving it a second thought. But laying there in the middle of the night with nothing else on my mind to worry about, was a completely different story.

By the time I woke up on a grey Sunday morning, last night’s occurrences felt like nothing more than a dream.

Curse of the One Touch Verio IQ

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I first received a One Touch Verio IQ glucose meter when I started on my insulin pump in May 2016. As most diabetes sales reps do, I received a rave review about how it was one of the most accurate blood glucose meters on the market.

I was using the FreeStyle Insulinx at the time, which I absolutely loved for it’s ‘Lite’ test strips that only required a tiny sample of blood and weren’t wrapped in that annoying foil. Although I had no intention of switching from the Insulinx, I decided to place this meter in my travel case and use it as my spare.

To give it credit, the Verio is actually quite an attractive meter. It has a colour screen and a backlight that automatically comes on when inserting a test strip. The meter is a refreshing white colour, rather than the dull greys and blacks that I’m accustomed to. By far, my favourite thing about this meter was the plastic shell that holds the meter, test strips and lancing device, which makes it super easy to carry.

Unlike any other meter I’ve used, its also rechargeable. This is good in the sense that you don’t need to keep on buying batteries (which are expensive, mind you!), but also not so good in the sense that you need to remember to keep your meter charged up before leaving the house. As a travel meter, the battery life held up well and would typically last me a month.

Testing with this meter was tricky to get my head around. Unlike FreeStyle and AccuChek meters, the test strip port was situated at the top of the meter. Additionally, blood had to be placed on the side of the strip, rather than at the bottom.

My pet hate was getting strip fill errors if I didn’t get sufficient blood on the strip in one go. I had a lot of these in the beginning as I was getting used to placing blood on the side of the strip. This was extremely wasteful compared to FreeStyle meters, which would give me ample time to apply additional blood.

I also didn’t like the fact that the capped test strip vials only stored 25 strips rather than 50, and that boxes came with 50 strips instead of the usual 100. This was an unnecessary waste of packaging materials, and meant that I needed to buy double the number of boxes to get the same amount of test strips. Although the price was comparable to other brands, Pharmacies didn’t necessarily stock more boxes of Verio strips on their shelves.

However, the biggest dealbreaker for me was the accuracy of this meter. I have consistently found that the Verio reads 0.5 to 1mmol higher than each of my other blood glucose meters.

Of course when I raised this issue with Aussie distributor AMSL diabetes at the ADS-ADEA conference last year, I was basically told that it was the other meters that were wrong. The accuracy of this meter fell within the acceptable Mean Average Relative Distance (MARD) from laboratory glucose readings. It had also been recommended for calibrating readings with Dexcom, which is the golden child of Continuous Glucose Monitoring.

I’ve done a little experiment with some of my leftover test strips, comparing the Verio with my FreeStyle Insulinx, Accu Chek Guide and FreeStyle Libre. I washed and dried my hands prior to each test, as I’m well aware that any moisture or dirt on my hands can impact glucose readings.

To be fair, all meter readings are only accurate to the nearest 1mmol of a laboratory result. Two simultaneous blood glucose readings will likely produce different results. So how do I know which of these readings I can trust?

I’ve found myself feeling hypo on several occasions, only to test with the Verio and receive a reading in the 4s. Patterns as exhibited above are a regular occurrence.

I’m exercising my own judgement here, in saying that I simply cannot trust this meter.

Why I Am Waiting.

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Unless you’ve been living under a rock, you’ve likely heard of the whole We Are Not Waiting movement. You know, a bunch of people who are hacking their diabetes devices in order to enhance their functionality. Such as transmitting blood glucose data to other devices, turning a FreeStyle Libre into a CGM with alarms and even closing the loop between an insulin pump and a CGM.

You need look no further than the name of this movement to find the reason for it. People with diabetes really are at the mercy of device companies, regulatory bodies or, in the case of the snippet I read in yesterday’s paper, researchers who are currently attempting to regenerate organs in sheep!

I don’t see a cure on the horizon in the next ten, twenty or even thirty years. The business of business is business. Advancements no longer feel like a solution, but rather a pathway to the next enhancement or product. Both consumers and device companies seem too focused on feeding this diabetes technology frenzy.

The most realistic advancement that I do see on the horizon is a commercial closed loop system. That is, an insulin pump that communicates with a Continuous Glucose Monitor to automatically regulate blood glucose levels. There are a few systems currently in development in the US. Yet I don’t realistically see any of these getting into my hands here in Australia in the next five, dare I say ten, years.

I need look no further than the current insulin pump situation here in Australia. If online communities are anything to go by, Aussies are crying out for a new insulin pump option to hit the market here. There are insulin pumps listed on the TGA website that can be legally sold here in Australia, and yet we are left waiting at the mercy of distributors, device companies, marketers, financial strategists, and all of the other powers that be.

Better yet, it’s 2018 and people are still forced to do all sorts of questionable things in the name of INSULIN, the drug with a price tag that is skyrocketing by the day.

I have been reading up on the likes of hacking a FreeStyle Libre system and closing the loop over the past couple of months. There is a growing community of people here in Australia who are buidling and running homemade closed loop systems, and you can lurk or join them here.

I, however, have made the regrettable decision that I will have to wait.

For starters, I would have to commit to full time Continuous Glucose Monitoring. This is not currently subsidised for adults like me here in Australia. Nor is this, as well as the other hardware required, in my current budget while I am working toward other financial and career goals. Secondly, I don’t own a pump that is loop-able, and I don’t like my chances of being able to get my hands on one.

Finally, I’m not sure that I would be able to give any ‘we are not waiting’ efforts the due focus that they would inevitably require at the moment, with a lot of other priorities on my mind for the year ahead. As one Facebook group admin puts it, don’t bother asking for the idiots guide as these solutions aren’t for the faint headed!

I am frustrated. Not because I’m envious of others who do have the means to do so. Not because I can’t manage. Not because I don’t have good health, excellent access, good people around me or a good quality of life.

I am frustrated, because people with diabetes deserve so much better than what they’re currently getting.

Finding Independence from Continuous Glucose Data

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In my latest column over at Diabetes Daily, I’m talking about how I’ve arrived at a place where I don’t feel dependent on continuous glucose data to manage my diabetes.

“The FreeStyle Libre was my first foray into the world of continuous glucose data. After knowing nothing other than pricking my finger up to 15 times per day for six years, it was amazing to be able to check my blood sugar levels so conveniently. The small round sensor that sat on my upper arm provided me with a blood glucose reading, a trend arrow, and an 8-hour history graph each time I swiped my reader over it.

However, the data was addictive. Within the space of a few months, I felt heavily reliant on this device. When the life of my sensor came to an end, I really missed it. I felt lost, and even a little anxious about how I would cope without it. I had lost a great deal of confidence in my diabetes decision making.”

Check out the full column over at Diabetes Daily here.

FreeStyle Libre: Questions and Answers from #DX2Melbourne

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I’m back home today after a whirlwind two days spent at Abbott’s Diabetes Exchange event in Melbourne. The event was filled with such insightful and stimulating conversation, that my mind was still buzzing at 11.20pm last night when I finally crawled into bed at home.

Abbott covered my travel expenses from Perth to be there, but they did not pay for my opinions here or anywhere else. I am really grateful that Abbott are continuing these consumer conversations after last year’s DX2Sydney event, when they clearly didn’t need to. Perhaps my views are biased because I was a part of these conversations, but I am really enthusiastic about the FreeStyle Libre. My experience with it has been largely positive, and it continues to be a part time member of my diabetes toolbox.

It was fantastic to hear the Abbott team acknowledge and even encourage those little tips and tricks that people out there are already doing, even if they couldn’t technically endorse them. Like letting the sensor sit for a day after application before starting it up. Or the Rockadex patches and other adhesives that people are buying from small businesses online. I loved that they were somewhat aware of what people are doing out there in the real world.

Through my blog, through e-mails and through my circles here in Perth, I have received a great deal of feedback on the FreeStyle Libre. People either love it or hate it. Today, I thought i’d start by sharing some of the feedback I received from Abbott over the past two days. While I’m doing my best to relay what I heard and talked about, I can’t guarantee that these words are 100% accurate.

External adhesives.

Hands up if you’ve had a sensor fall off? During the days of warm weather, t-shirts and outdoor activities, that sensor is simply not sticky enough for me. Jessica Shi, Abbott’s QA and RA Manager, tells me that any external adhesive needs to be of medical grade in order for it to be officially endorsed.

Inaccuracy of the sensor when levels are high.

Ever had the Libre tell you that your blood sugar was 18mmol, while a fingerstick gave you a reading of 13mmol? There was definitely a conscensus among the room that some of us had difficulty trusting the sensor at times.

Bruce Passingham, Abbott’s Scientific Affairs Manager, told us he’s interested in hearing about each individual’s circumstances. There might be other conditions or medications that could be affecting results. He also touched on hydration as well, which is a no brainer for me when my levels are a little stubborn.

The biggest takeaway here is to make sure you call customer service. I am so surprised at the number of people who tell me that they haven’t bothered to. All of my issues have been resolved through customer service, and a few bloggers in the room praised the express shipping of replacement sensors.

When will we see the Libre funded by the Australian government?

Earlier this year, the Department of Health was seeking submissions from consumers to potentially get the FreeStyle Libre funded through the National Diabetes Services Scheme. It’s currently a bit of a watch this space…

Are there any plans to add alarms to alert users of dropping blood glucose levels?

In reference to the likes of Dexcom and Medtronic, Abbott have reminded us that their product is not a Continuous Glucose Monitor. It is a replacement for finger sticks.

How many people will an automated insulin delivery system actually reach?

Recent headlines out of the US have surrounded the partnership between Abbott and Bigfoot Biomedical, makers of an automated insulin delivery system. “Next generation” FreeStyle Libre sensors will supply glucose data, which Bigfoot’s system will use to automatically deliver insulin and regulate glucose levels.

My question to the team was around how many people the end product will actually reach. I was told that this next-gen Libre sensor can also be paired with a Bluetooth enabled insulin pen, which will provide smart dosing advice for those on Multiple Daily Injections. Abbott expect that their product will reach a greater number of people through the options for people with type 1 on Multiple Daily Injections, and those with type 2 diabetes.

Obviously, don’t expect to see anything like this to hit Australian shores for a long, long time…

This doesn’t even begin to scratch the surface of a very stimulating two days of diabetes conversation, and I’ll have more to follow in the coming days. You can also keep an eye on these bloggers who were in attendance, for their perspectives on the event.

Further disclosures: Abbott supplied me with a new FreeStyle Libre reader, two sensors, and a lovely goodie bag with some pens, paper and a few other bits of branded stationery. I was put up in a room at the Blackman Hotel in Melbourne for one night. I was also fed and watered across the duration of the event.