Back To The Future

Great Scott! Or similar words have been exclaimed by me since the summer of 2023. The reason for such excitement? Hybrid Closed Loop. You've probably read some of my gushing on the subject and I continue to talk positively about it today because... well, sleep never gets old.

Prior to HCL, like many using the tech, I was using a pump and various types of CGMs separately and that was perfectly acceptable. My numbers were as good as they'd ever been; Great Time In Range & HbA1c. I felt no urgency to switch to closed loop.

As is often the case, talking to peers results in changes and it was an unrelated conversation that resulted in one kind person sending me a spare Dexcom G6 transmitter... then another from another person... and Anubis transmitters from two others. People within the diabetes community are really very kind. All that tech meant I could try HCL for a good while - over 6 months. So, I did.

There are lots of posts about how well things went for me in that period. Towards the end of my HCL time, I had my diabetes review with my consultant. He agreed that HCL was working well for me and that funding would be discussed at an upcoming meeting. Fantastic!

Of course, the tech expired as tech has that annoying habit of doing. I thought nothing much of it. I assumed it would be a seamless transition back to simple pumping and CGM use. It was. Reinstalling the old app was a pain in the neck because I can never remember usernames and passwords but, after some swearing and sweating, I managed to get set up again with Dexcom One. Quite soon, I realised just how much work I was putting in to this type of management compared to the recently ended Hybrid Closed Loop days.

The numbers were not looking great. *sigh* I thought I'll get through the life of the current sensor, then I'll buy a G6 transmitter and hop back aboard the Looping train. I noted the difference in managing Type 1 Diabetes through HCL vs standard pumping, on X. Peer support came to the rescue (again). Another spare G6 transmitter landed on my doormat just two days later. The #PayItForward movement is a remarkable one. My donor would not accept any reimbursement for postage. Blessed, I promised to donate something to my favourite diabetes charity - Action4Diabetes as my own Pay It Forward. Of course, if I'm ever in a similar position to my donor friend, I will do the same thing for others. 

So, I'm back in the future! and over the last few days, the numbers are already proving how incredible the technology is once again. When just pumping and using a CGM separately, my average blood glucose was 8.5 mmol/L. I know that's not terrible, really. Yet, I could "feel" it. I was sluggish and just... blunted. Finding the right words is difficult. Needless to say, I was not myself.

And after a few days in the loop?...

Already, a significant difference over the previous 2 days. I think the numbers speak for themselves. You've probably read enough gushing from me, by now.

What happens next? I'm going to relay my experience and thoughts to my diabetes team. To move to HCL, then move off it, then move on to it again seems a little unusual and they may benefit from hearing about what has happened while looking at the data.

Also, and I've said it many times, I can never repay those who have been kind to me over my diabetes in the last 7 years - since opening up and talking about it online. I do try through various means. Some of those don't sit well with everybody and that's alright. Even the kindest will meet opposition and anger and jealousy. Do good things with good people. You'll usually finish up sleeping soundly, especially if you're using Closed Loop! 

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Hybrid Closed Loop - My Thoughts

The future has arrived! Yes, I know many of you reading this will have been managing your diabetes with Hybrid Closed Loop for a while now and that it's not exactly new news for you. 

At Dad Towers, I've been hesitant to take the "next step" from insulin pumps and CGMs to the "all in one" of HCL since I began using an insulin pump in 2021. I didn't feel the urgency to change what was already working well for me, I didn't feel inspired to learn about closed loop, HCL, AID, APS and host of acronyms which were, to be frank, a bit of a turn off. I write those words as somebody who is very pro-tech when it comes to diabetes management and as somebody who understands most of what HCL means. Still, in the last couple of years, I felt in no hurry to try it.

As is often the case, conversations with peers, particularly well-meaning peers within #GBDoc, resulted in the change. As is also often the case, I've done this without the "blessing" of my consultant or an agreement with any of my HCPs. We'll talk about access later on.  The kind-hearted folk within #GBDoc have taken care of me on so many levels in the last 6 years, so I suppose it's not really a surprise to have transmitters, sensors and even different CGMs sent to me to try out. It's not a surprise, yet my heart bursts with gratitude when others offer the time, energy and often money to support me. I'll do what I can to pay that forward, of course.

Right, let's get into it; HCL, is it any good? 

Firstly, take a look at the image above. That's a screenshot from Dexcom Clarity. A nice splattering of green days and impressive time in range. For the system I'm using (Control IQ via Dexcom and T:Slim) those numbers didn't take long to achieve. The first day or two on HCL was fascinating to watch. My pump was constantly adjusting my basal rate, administering little boluses, reducing basal, suspending insulin, etc. Basically, it was micro managing everything and doing so for 24 hours a day. I love a little micro managing action myself, but even I can't do that for 24 hours a day. Impressive stuff and the results were almost immediate, lines have been flatter, spikes less spiky, hypos less severe, and I imagine my next HbA1c will reflect this improvement in management...

...management? Yes, you're still the boss, you can still administer a dose, you still need to carb count and pre-bolus for your meals & snacks. You're not a complete passenger with HCL but, if you're anything like me, you'll need to learn to let the machine do it's thing and trust in the tech. 

I've put HCL to the test a few times, including early on when I purposefully carb counted 50% lower than the meal actually contained. I expected a spike and it did happen, yet HCL sprung into action and upped my basal rates quite dramatically. It caught my purposeful error and brought me back into range within an hour or so. Wow!

Recently, I spent a few days away on a short break. That included a day at the beach. Walking and warm weather is a recipe for a hypo for me, but I thought I'd put HCL to the test again. I left my hypo treats in the car and armed only with a debit card to purchase food and drinks from a little cafe, I set about wandering around the sands... some running around too, with a Cocker Spaniel enjoying the new environment to sniff and explore. I kept an eye on Control IQ, which displays my blood glucose alongside exactly what's going on insulin wise. From a starting BG of 7.6 mmol/L, things dipped to 5.8 mmol/L and at that stage my insulin was suspended by Control IQ. Trying to not worry, I headed to the cafe to buy a sugary drink and as I cracked open the can of brown fizz, my BG was back to 6.4 mmol/L. No input from me, closed loop did all the work.

Of course, I'm not suggesting ANY level of exercise won't require some input from you when you're using HCL but, for me at least, walking around a beach for a few hours wasn't the huge problem it once might've been. And I definitely don't recommend leaving your hypo treats behind - That's just silly. 

However, that's a tremendous thing about closed loop; it reduces the worry, the decision making. You can just crack on with whatever you need or want to do and if any problems arise they're likely to be minor ones that need minimal input from you. 

It's not a cure. It's definitely not an "artificial pancreas". What it is, is an advanced way to manage T1D. Now, the only issue for me, as it was with pumping, will be to convince my consultant that HCL is right for me. That means obtaining Dexcom G6 funding.... or does it?

Whaaaaaaat?

Well, the thing is, Dexcom One sensors will work perfectly well with G6 transmitters. The sensor codes have been "hacked" and a list of Dexcom One code: 2222 = Dexcom G6 code: 4444 (as an example) is freely kicking around on your Interwebs. So, essentially, I only need the transmitters while I'm prescribed Dex One sensors. Conversations are to be had! 

Finally, you've probably noticed that Partha & co. have been working hard on making HCL accessible in NHSE. There'll be criteria, and from the outset it looks less stringent than the insulin pump criteria of old (7.5% A1c vs 8.5%) so, that's a good thing. I imagine access will be more relaxed as the next few years roll by until we reach a point where all with T1D can access closed loop in England and Wales. Perhaps that's called the Libre Point? Remember in 2017/18 when access to Flash was the big issue? Here we are, 5 years later and still not cured, but access to that tech is no longer a problem.

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Taking Diabetes Advice

Happy New ear... Year! I hope 2023 is very kind to you and that your diabetes is more easily managed than ever before. 

I wrote about sharing our diabetes information, data and stories in my last blog post. If you read that post, you'll know that I'm very pro-sharing and the benefits of reading and listening to the lived experiences of my peers has been profound. I will go on to read and listen to my peers (now friends in many cases) and hopefully continue to learn more about my Type 1 Diabetes throughout 2023. Today, I'd like to bring up the subject of advice, why it's different to offering a lived experience story, why you shouldn't give advice and why you SHOULD take advice from the right people.

It is difficult to not offer a word of advice through social media at times. As I've aged with my T1D I've picked up a lot of useful information, tips and tricks along the way which I have stored in the space dominating, diabetes area of my brain. A person who is seemingly in need of advice is likely to pop up on socials regularly and if you're the sort who likes to help then the temptation is a strong one. So, why should we be cautious? T1D has many nuances, twists and turns, inexplicable happenings and sometimes it's just a driver of bizarre events. The very basics of the condition appear to be common from person to person but dig into the details and you'll find your peers, any peer, probably has a different reaction to any given thing. That makes giving advice a very dangerous thing to do. In the UK, we have trained professionals who are medically and legally allowed to offer certain types of advice. It's unlikely that @Johnny5543772 (might be a real account, apologies if that's you) has the right qualifications to offer you advice in regards to your health. It could be that Johnny has the right qualifications but no access to your medical notes, history, medications, allergies, etc. His advice, or the advice of any well meaning individual, might be sound but it could also be deadly. Giving and taking medical advice through social media seems like a big avoid to me.

Advice, of course, is not the same as offering your lived experience. Questions about T1D will appear on your timelines frequently but rarely are the answers black and white. Questions of technology accuracy, insulin speeds, skin reactions, even clinician reviews will likely differ from person to person. There are many more examples, I know, but you get the gist. Accuracy reviews are a particular gear grinder of mine and that's not because poor accuracy in blood glucose monitoring isn't important, it's an essential part of T1D management that needs to be reviewed, it's because we hear different stories from different people. For example; Libre 1 was a terribly inaccurate piece of equipment for me. I even made a couple of videos to highlight it however, I have since accepted that it worked very well for many others and it wasn't a case of Libre 1 being inaccurate, it was a case of Libre 1 being inaccurate for me. The same could be said about some versions of Dexcom. So, a question appears about a CGM; "Is CGM X accurate?" The answer can only be based on your experience of it or the second hand information about it from your friends. 

CGM accuracy is a rather specific subject, I won't dwell upon it, but hopefully you're understanding what I'm talking about - T1D and all that comes with it can be different from person to person. Advice from strangers should be taken with a large pinch of salt.

What about the people "in the know"? The qualified, your diabetes HCPs. It's been said that nobody knows T1D like a T1D and that's probably right in many respects. Let me tell you a little story which proves that the opposite can sometimes be true. In late November, I was set up with my T:Slim X2 pump and I was sceptical about the afternoon-long appointment. I was confident about setting up the device and it's on going usage, indeed I didn't learn a great deal of new things in that appointment but it was still worthwhile. The suggestion to change my basal rates was put to me and, to the amusement of the group, after a couple of minutes talking to the DSN, I announced "I'm sold! I'll give it a try". I'm glad that I did despite the logic not really settling in my brain. The new basal rates have increased my TIR (time in range) and my eA1c has reduced by 0.2%, fantastic. I also began to use the bolus wizard on the pump, following DSN advice. Both changes to my management have improved my T1D. I don't believe that my HCP has diabetes but her calculations and advice have been sound. 

While we're in the driving seat with our T1D and rarely do we see our diabetes team, sometimes the best advice will come from them and that's where I believe you should seek your medical advice while learning from the lived experiences of others and learning to trust your in your own. 

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

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Diabetic Christmas

Ho ho ho! Merry Christmas. It's that time of the year again! Fun, food and excess are on the agenda for many, including the diabetic community. Whaaaaaaaat? But, you can't have excess, food or fun if you have diabetes, can you?!

If you were to pay attention to many media outlets, websites and the social media accounts - often claiming to be a diabetes expert, doctor, lifestyle coach or miracle worker who can cure you of diabetes and herpes (!?), then! you might be forgiven for believing that Christmas and diabetes do not mix. I can't and won't talk about your diabetes in relation to Christmas, that's a ridiculous thing to attempt because I know very little about you and your diabetes or how Christmas impacts upon you. The common use of "We" when diabetes advocates talk about the condition has never sat well with me. "We" suggests to me that a person is expressing the views or conveying the words of a community largely or entirely. In reality "We" refers to the person behind the keyboard or microphone and perhaps a relatively small number of people who have diabetes. It's totally alright to use the word "I" when expressing yourself, I promise. So, with that little rant off my chest *I* have a few things to say about T1D and Christmas.

T1D because that's the diabetes I live with. I'm a Type 1 Diabetic. 

Christmas has historically been a tricky time of the year for me especially those first few years as a recently diagnosed diabetic. Looking back, the avoidance of chocolates and sweets and pursuing precise carb counting seemed very reasonable at the time. Strict "control" was hammered into me and my parents. Of course, I stole sweets and chocolates and had strangely elevated blood glucose for several years at Christmas time. That advice and care seems a lifetime ago and indeed it is, I've recently passed 38 years with T1D. Today, there is no advice offered to me unless you count the unsolicited, largely nonsense, advice offered via the sources mentioned above. Christmas was a tricky time but no longer. Why?

Education has played a large part in understanding my own T1D. That has emerged through the lived experiences of my friends and peers and, to some degree at least, the official information published by recognised authorities on the subject. Alongside the education, the tools of 2022 are a million miles better than the tools of 1984. Come to think of it, the tools of 1984 weren't much of a thing at all. Finger pricking took an age and involved popping down to B&Q for a colour chart. Berocca style tablets had to be dropped into a tube of your own urine and injecting insulin involved borrowing a javelin from Tessa Sanderson and mixing two different types of Banting Juice together yourself. Definitely not the good old days and before 1984 it wasn't exactly a rose garden either. The tools of today are simply incredible in comparison. A tiny pump and a CGM are attached to me and they're helping me to effectively manage my blood glucose and live a much less burdensome life than in the years gone by.

Less burden, well managed blood glucose... it sounds like Christmas might not be such a stressy diabetic experience now. It's not for me. If I know the carb count, I bolus for it. If I don't know the carb count then I'll guess and correct any mistakes later on. The CGM alerts me when I'm high or low OR even when I'm within 15 minutes of a high or low event. I can relax and enjoy what any other person might do during Christmas. That never seemed like a possibility to me when I was young and I'd simply given up on the idea of an easier diabetes during my 20s and 30s.

Apparently, life begins at 40! My diabetic life has certainly gone through a renaissance since I hit 40, since I grabbed the little shit by the neck and took charge, since I embraced and accepted it, since I discovered a huge community of peers - dozens of whom are now really great friends, since I pushed for the technology which I need to lift the burden and improve the numbers which I get a little obsessed about from time to time. 

A Diabetic Christmas feels like... Christmas! to me, at least. I hope it feels like that to you and that you have a relaxing and fun time with the people you love. If you're struggling for any reason then please don't feel that you're doing anything wrong. You're not a bad diabetic! Help and support is available through so many avenues that it would be almost impossible for me to list them all. Instead, don't give up. Seek the help that you need and push for the support, information, medications and technologies that you need for you and your diabetes. Merry Christmas.

  Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

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Review - The T:Slim X2 Insulin Pump

It's been a long time in the coming, just how long? You'll need to read through some of my blog posts from the summer of 2021 to get an idea. However, let's not dwell on time frames and fighting for funding. The title of the blog should indicate that I'm going to tell you all about the T:Slim X2 pump. I'll try! 

The above image was taken a few moments before I began writing - I'm almost at 48 hours on this pump, now and it was handed to me, fully charged. It was suggested that the battery would last between 5 and 7 days for normal pumping (not looping) and that seems correct, right now. I think most of us could cope with one "big charge" of the battery every week or so. Although, the suggestion of charging it for 10 - 15 mins each day seems like a good one. Perhaps it's worth popping on charge while you take a shower or a bath, with the pump unplugged from you at that stage. I'm happy with a rechargeable battery, rather than a disposable one, as it seems more planet friendly and a once per week charge or a few mins each day is not going to disrupt my life.

The pump feels very smooth, almost slippery, to hold. It's made from aluminium and it feels very strong and well manufactured. It's also a very small and light weight pump. If you've ever used a Combo, it's smaller than that. How about one of the Medtronic bricks? It's much lighter and thinner. I actually have some pocket space again! 

How about usage? The image above shows the home screen and the numbers 1, 2, 3. To unlock the pump you tap the numbers; 1, 2 and 3. That's not your PIN! If you want that second level of security then you can add a PIN in your pump settings. I like this form of unlocking, it prevents accidental unlocking and the tapping of functions. If you do leave it unlocked and randomly tap an area of the screen which is not a pump function then, after 3 taps, the pump will recognise that you're not purposefully trying to activate a function or setting and it will lock itself again. You can manually lock the screen by pressing the T button on the top of the pump - that's your on and off switch, in effect. Yes, the pump does still carry on pumping when you press the T button to turn the screen off.

The screen, just like any mobile smart phone - you tap to navigate around but there is no swiping or scrolling, just the tapping of arrow buttons to move up and down the pages or to go back and forth between options. And the display? It's bright and this is my first, albeit tiny, gripe; There is no obvious way to reduce or increase screen brightness. During the evening, I'd like the option to reduce that just a little so it's a bit kinder on the eyes. It is only a minor gripe and in comparison to my old Combo screen it is far superior and easier to look at.

Is it loud? Oh, yes! Fortunately, there ARE options for volume! From high, medium and low volumes on all the important pump functions - and if low is still too much then you can set it to vibrate instead.

There is wizardry in the form of a bolus wizard. I'm delighted to report that it's really very good. It'll take into account your insulin on board (IOB) and your target blood glucose along with your carb to insulin ratio before delivering a bolus. I've used it for every meal, every snack and every coffee for the last 2 days and my time in range has been 99% and 94% for those days.

Insulin to carb ratios and basal rates should be set up before you begin pumping. It's very easy to do those things, you'll probably learn how in your pump start up appointment and they can be adjusted by you at any time.

Temporary basal rates can be set, extended boluses are an option - standard stuff, these days, but they're very useful features and certainly ones that I use from time to time. How about stopping insulin delivery? Because, you know, you might have a hypo sometimes. Easy! it's just a couple of taps away. Insulin can be suspended for a minimum of 15 minutes or you can specify an amount of time in that menu.

Insulin? Ah, yes, that's pretty important. You'll need to draw up your Banting Juice in a syringe and inject it into the cartridge, doing all the air bubble avoidance and removal things. It's a little bit fiddly because the pump and carts are so small. If you have issues with your grip or a visual impairment then you might need to seek assistance at this stage. Also, it's a NovoRapid or equivalent insulin only pump. So... yeah, no Fiasp or Lyummy! *cough, cough*

How about the Infusion sets? AutoSoft 90 was provided and I think they'll be the best option for most people. Other sets are compatible and there is a steel option so, find the one which works best for you - YouTube is your friend, here.

What else? There is s belt clip and a cartridge removal "tool" although, you can remove those with a coin if you'll do what I'm very like to do and lose the tool. You might also get a lot of "suggestions" for places to shop for belts, pump stickers, etc. But! I don't mind a little spam if it comes with a free pen and a ketone check monitor.

So far, I'm very happy with this pump. It is a million miles better than the Combo and I really loved that pump, too. However, it's early days, problems might happen later on and I'll report back if they do.

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

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