To Loop or Not to Loop (Part 1 of x parts)

Pleased to meet you, I’m Dave and I’m a lapsed blogger.

(*There’s a rather complicated disclaimer for this series of posts. In summary I’m getting paid nowt and haven’t got anything because all choices and decisions have been driven by me. It might spoil the end if you read it now but if you want to it’s down at the bottom. Thanks)

It’s been a while since my keyboard and video device were fired up for the purpose of this blog and, as always, I apologise for my tardiness. Like everyone with Type 1 diabetes, at times I often struggle to fit managing my condition into a busy life and in this instance the blogging has dropped off a little. Oh well, time to pick it up again with a new series. The thinking here is that if I say that I will write the next one I probably will. Anyway, you’re rambling again Dave; crack on.

Almost exactly 8 years ago I decided it was time to sort out my condition and grab hold. At the time I was injecting and testing at less than optimal frequency. Once I became engaged with my diabetes I quickly arrived at a point of deciding whether to stay with multiple daily injections or shift to an insulin pump regime. If you’d like to revisit my headspace at that time please have a read of my ‘To Pump or not to Pump’ blog from back then. Also at that time I was very fortunate to have started to get to know the wonderful Every Day Ups and Downs Mike who was going through the same decision making process.  (BTW If you click on the link above and never come back I’d understand, his articles are always 5 star.)

After saying yes to the pump I got to choose, from a choice of one, the Medtronic Veo. A few weeks later I ended up with Fred.

Over the years in-warranty replacements, and the very kind lending of pumps from elsewhere – you know who you are - have kept me with the same pump model. I now have Pink and we’re comfortable with each other.

Me and Adam (or Red or Pink) were, mostly, very happy together. We did however, have a break in 2015 when I had a brief, #gifted, fling with a 640G for 64 days. 

Thankfully Adam wasn’t bitter and took me back as long as I promised not to be unfaithful again. And this is how it has been since 2011.

Those of you who have an insulin pump may be scratching your head and wondering how and why I haven’t been forced to update my out of warranty pump before now. To be fair, I’m not entirely sure. I think the 640G thing confused hospital systems about how old my pump was. I also smiled nicely quite a bit and said it was working fine and I’d sort it once it broke. “Surely it’s better I’m saving the upfront costs that a new pump would bring?”

A key reason for me not switching was that I didn’t want to get locked in to another 4 years when technology was advancing so quickly. I genuinely loved the SmartGuard function of the 640G that helped to reduce my hypos but I also knew that something that would also deal with the highs shouldn’t be too far away. And if Medtronic were working on that I hoped the competitors would be too.

Over this time what began as a small revolution started to take hold. #WeAreNotWaiting and other groups of wonderful engineers were using existing technology to build their own ‘artificial pancreata (AP)’*. This has also become known as Looping. The origin of this is the idea of closing the loop between blood glucose measuring and insulin delivery so that it is done with very little input from the person with diabetes. 

*No, I didn’t know what the plural of pancreas was either. Every day is a school day.

If looping and #wearenotwaiting are new terms for you I’d recommend some background reading as others with much more experience describe it much better than me. This excellent article by Tim is a great place to start.

#edit Tim has also pointed me towards this excellent book Automated Insulin Delivery by a leader on the subject Dana Lewis avaiable in print or as a free download. "Dana is a creator of the “Do-It-Yourself Pancreas System” (#DIYPS), founder of the open source artificial pancreas system movement (#OpenAPS), and a passionate advocate of patient-centered, -driven, and -designed research." In summary; an expert in this field. Follow her.

One piece of the jigsaw used in a lot of the homemade systems was a Medtronic pump that looked exactly like mine. And if the original Adam had survived until today he would have been one of that kind.

Unfortunately for me, over time Medtronic locked down the pumps after the media went a little hysterical about pumps being able to be controlled remotely to give lethal doses. It was all about the version number of the pump software. My current one is version 2.8B. To be able to loop I needed version 2.6A or younger. At one stage, with permission, I went hunting through a box of old pumps at my diabetes clinic and came away with a few possibles. Unfortunately as soon as I put the battery in, the version number was always too new. And this week they have issued a soft recall to remove all the hackable pumps from use; for safety reasons obviously.

All the reading about looping online was drawing me in and over the last couple of years the idea of a more automated system has appealed more and more. Tied with this I have been wearing, and paying for, an Abbott Freestyle Libre almost full-time for nearly 4 years so the idea of not using continuous monitoring in a more productive way seems negligent. Slightly deteriorating hypo awareness has also made me realise that from a safety point of view adding a few automated airbags into my diabetes care would be a very good idea.

I’ll pause here to say that the following is how my thinking has developed over time. Just because it is different to others' doesn’t make mine or their decision wrong. Your Diabetes May Vary has never applied more than it does at the moment with so many different treatment options possible.

So which way would I go?

For me it has come down to two key questions, which are linked very closely.

1: Which pump, or system, would I like to have the most?

2: Which are available to me?

In my inner psyche I do like rules and staying on the grid. Saying that I’m not averse to bending the rules a little. Until NHS funding was secured in April for my Freestyle Libre I was using a MiaoMiao device to enable me to get my glucose readings delivered to my watch. There was risk here as the readings didn’t have the official device’s adjustments for temperature etc but I accepted and accounted for those risks to give me convenience and alarms.

Over time I have discounted the idea of paying for an older Medtronic pump or buying a newer one from another country. As demand has grown both would have probably cost upwards of £500. And with that price comes no assurance on how long it would last before I'd need to purchase another.

So now it comes down to options for new pumps that are on the market that have automation built in or where it can be tagged on.

As it is the list I could see available is:

Home built systems: Dana RS plus Dexcom, Omnipod plus Dexcom plus Rileylink, Accu-chek Combo plus Dexcom plus Smartpix or Realtyme.

Manufacturer built systems: Medtronic 670G plus Guardian 3, Tandem t:slim X2 (with Basal IQ imminent, Control IQ forecast for 2020) plus Dexcom G6.

So how did I reduce the list down to a top three very quickly? Well, I’m afraid the first two to go are the Omnipod and Accu-chek combo. The Omnipod for no other reason than I like a tubed option. I know exactly where the bit that I need to give me insulin is. It’s attached to me somewhere. The Omnipod needs its handset and I would lose this. There’s no doubt here. My forgetfulness is legendary and the day would come when I’d walk out the door, get on the train and shout a few swear words because the vital bit was next to the kettle at home.

And the Combo? I'll be frank, it just doesn't excite me. I know I can automate my pancreas with it but I've got another 4 years to go with a new pump and it will be in my pocket for most of that time. I'd prefer a colour screen. And if no colour then it needs to be smaller; a la mylife YpsoPump. There you go, no logical reason to cross it off the list but it's a personal choice so I'm letting myself be irrational.

So three to go…

Dana RS – One of the smallest pumps in the world it also uses Bluetooth to communicate with a smartphone to allow management through an app. Also designed to be compatible with Android APS that will allow automated insulin delivery decisions to be made based on reading from a compatible CGM. At the moment the most popular CGM brand to use for this is Dexcom. The UK distributor for the pump is Advanced Therapeutics, sensors are direct from Dexcom.

Medtronic 670G System – An upgrade on the 640G, the 670G uses, Medtronic only CGM, to continually read the glucose level in the body and deliver basal insulin according to that. Once fully in automode it does not require patterns to be set as it is continually updating. The wearer still needs to enter carbohydrates for meals. A downside for many people is that the target BGs are much higher than people can set with homemade systems. Another downside for some is Medtronic’s Guardian 3 sensor. I have always found the earlier Enlite sensors to be good but others have not. This has has knocked some people’s confidence in the brand and has a knock-on effect to those who have never tried but hear the testimonies. My usual mantra applies here; unless you've tried you can't be sure how it would work with your body. On top of that in the UK are also issues currently with sensor and consumables supply. For me, I’ve not had an issue but the others have had problems and that could be a concern going forward. The 670G is supplied in the UK directly by Medtronic only through centres that have been approved for supply.

Tandem X2 – The Tandem is a fascinating option. A new entrant to the pump market it is manufactured more in the way of a mobile phone than an insulin pump. This means that as features are developed these can be refreshed through software updates rather than a whole new pump. This helps to reduce the fear of committing to something for 4 years when the next big change is "in the next 12 months".

New deployment in the UK has Basal IQ live and existing users will be updated soon. This works in a similar way to SmartGuard on the Medtronic 640G. Using the Dexcom G6 sensor it suspends insulin before the wearer hypos and resumes basal delivery once the numbers are safe again. The next upgrade is Control IQ. This will add in the ability to automatically deliver insulin when the wearer’s blood glucose is above a predefined number.

No confirmation either way on whether there will be a cost to upgrade the software in the UK. Dexcom sensors are available from Dexcom direct and the pump and consumables are supplied to hospitals by Advanced Therapeutics.

So I have a theoretical shortlist of pumps I’d like to move on to next.

I like to share a lot on these pages about my health and don’t tend to keep any of my box closed. For the next paragraph though you’re going to have to just accept it without the reasoning and move on without too many questions. Sorry.

I now also have CGM funding possible through my team. This is not available for all and I understand how fortunate I am but as always there are criteria to meet and I meet them.

So which way do I want to move and which way can I move? I really can’t pick between the three although my inbuilt preferences are to lean towards the 670G and the T-Slim. I like the concept of full integration although the lack of talking to my phone and watch are frustrating.

Next up came a discussion with my, outstanding, consultant and we talked through the options. I enjoyed the conversation. Although the end result was almost pre-determined it was a real bouncing of ideas and reasoning. First off the list is sadly the Tandem. The clinic currently has no-one on this pump and not much resource in the short-term to learn how to support it. I certainly could push for it but this will inevitably take some time and a lot of work.

Next to go is the Dana RS. There are some in clinic on this but the team's experience is less and the need for an Android phone to loop is also a drawback for fruity Dave. It really is the small things that make a difference. An option could be to carry a dedicated AP phone that would do the brains part. But that's something else to carry on top of pump, normal phone, spares etc.

Which leaves the “world’s first artificial pancreas”. This phrase makes me smile as Medtronic were also using the term “artificial pancreas” in 2015 with the 640G. One of those parts where marketing inflates the reality slightly. My clinic has supplied Medtronic pumps for a long time and therefore have experience of the support and Carelink systems. For me, I’m also experienced in using the sets and Carelink which is the software that analyses the data after the event. This means this part of the change isn’t as big a step as it would be with the other pumps. I know it’s wrong to feel safe with a brand when there are ongoing supply issues. However, I’ve not experienced any problems where supplies were at zero so can only judge based on my own memories. I haven’t used the Guardian 3 CGM sensors but when I’ve used Enlites before they’ve always worked OK with me.

Making any decision involves a list of pros and cons. At the moment for me, the pros of the 670G vastly outweigh the cons and I’m excited about getting the chance to give it a go. 

Until then me and Pink will continue bolusing and getting along until mid-July.

I’m hoping to update my progress with the pump as I get to know it more and more. I'll delve more into the pluses and minuses of the system set-up next time. Among these are the forecast impact on my, always supportive, family when the alarms are going off through the night for calibrations etc. It will impact the whole house I am sure. I never underestimate how much my little Type 1 affects the lives of those closest to me and the worry it adds. I am hoping that the 670G can reduce the worry a little thanks to the airbags built in to keep me safe. Thank you as always and I love you lots.

I hope you’ll join me on this journey into a new approach to managing my diabetes. In other news I now have a new camera tripod so the return of the vlog is a possibility. Which will please and disappoint in equal measures I think.

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PS. I'll finish with a picture taken of me by Kirstina at the top of Scafell Pike. This was a walk I did with my son, sister and brother-in-law to raise money for the fantastic JDRF. We left at 01:15 so we could be at the top by sunrise. We managed this and we came back down safely before a lot of people had woken up. If you have a spare £1, $1 or €1 any donations towards finding a cure for Type 1 diabetes are gratefully received here.

Disclaimer time – It’s quite possible you know about my 640G blog posts and have assumed Medtronic have somehow pulled a few strings and promised me lavish weekend trips to the Geneva to ‘encourage’ me to have a 670G set-up. They haven’t. They did however pay for a train fare for me to go down to exotic Watford late last year to let them tell me all about the ‘system’. As always it’s interesting to hear what 'evil pharma’ are saying and as I know my integrity is solid I keep an open mind. It’s obviously up for you to judge my independence. My thought process is that if I have enough annual leave left, I’d always prefer to be in the room giving my thoughts, feeding back experience and challenging claims if given the opportunity. 

For full openness I’ve also previously signed an agreement with them to force me to write in an honest way and confirm I will not be paid for anything I say about Medtronic. However, I haven’t talked to them at all about the ‘choice’ I have made and it’s possible they are reading this as new news for the first time.

And for those who are still mumbling “well he’s been bribed with an apple Danish and fizzy water so he would say that wouldn’t he” thank you for reading this far, I wish you all the best and a fond farewell.