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Tell me I'm not being daft or am I ?

uselesspancreas

Active Member
Relationship to Diabetes
Type 1
After waiting nearly 3 years I have a date to go for loop training and I'm really excited about it but . . .
I'm a bit scared it won't work for me ( in what way I really don't know)
I'm worried about any pitfalls/ issue's.
And lastly I'm really hoping I haven't built it up to be so wonderful in my head and I'll be disappointed.
Tell me of your experiences when starting to loop experiences
 
OK, I am not a looper but ...
I would say you were incredibly naive if you were expecting it to be amazing with no bumps along the way.
From what I have read, it works pretty well for most people most of the time but there are a few gotchas along the way, especially around "edge scenarios" like exercise and illness.

I am sure the loopers will be along soon to give examples.

To me, you sound like you have a realistic head screwed on with no daftness detected.
 
If not mistaken think your already a pumper @uselesspancreas

Been looping for while now using Omnipod5 & Dexcom G6, can't think of many pitfalls if honest, maybe pump is a bit slow to react to fast rising bg levels but you can override that as I do myself if needed, pump takes into consideration any doses given so it doesn't over compensate.

With O5 G6 find they work really well together, no communication issues to date but some Libre users have had issues with them communicating but can't comment on that as I've only used Dex since looping.

Having some anxiety about moving to something new is expected, bet your were same when first moving to pump or changing insulins for example. Even if hcl doesn't work out you could go back to where you were before, there's no contract that I know of so it shouldn't be a problem if looping with O5 & G6.
 
After waiting nearly 3 years I have a date to go for loop training and I'm really excited about it but . . .
I'm a bit scared it won't work for me ( in what way I really don't know)
I'm worried about any pitfalls/ issue's.
And lastly I'm really hoping I haven't built it up to be so wonderful in my head and I'll be disappointed.
Tell me of your experiences when starting to loop experiences
I was very concerned when I first switched to looping (Medtronic/Guardian) over four years ago. I had to switch from my trusty Combo as that did not have the facility to loop . I also found it hard handing over many of the the decisions to the loop, having done it all myself for years when just using a pump.

However I am now very happy I made the switch. It is not perfect and as @helli suggested it does not work as well in extreme circumstances, but then neither did I. It has removed a lot of the thinking that I did before, and gives me times when I can ignore my diabetes. It copes with some of the higher fat meals that I had avoided for a long time, and sorts out errors from when I guess the carbs when I eat out. Not always as quickly as I would like it to, but I like to see the graph in the morning where it has done corrections in the early hours to bring me back to my target and has then levelled out. As a consequence I get a lot more sleep.

I still have to do the boluses etc at meals but I get a better TIR with a lot less work, but there are still frustrations. I did all my usual activities today and ate the same lunch with the same bolus but …. had a hypo soon after lunch. No logic for it at all! That’s just diabetes.

Any questions - just ask.
 
Closed loop helps but is not a total solution. Couple of pieces of advice:
1. If you have high blood glucose always check if a correction bolus has been delivered before doing a manual correction.
2. Falling / low blood sugars are corrected by suspending basal feeds. You will still need your quick acting sugar treat of choice.
 
Whether just pumping or pumping using Hcl it's vital to know what to do if things are going wrong, and how to recognise when a problem occurs. I loop with Medtronic and it's usually brilliant for me ( a bit slow to lower highs sometimes) . I recently had an issue when sugars rose overnight. High alarm went off, pump did corrections. However when I checked on waking properly my sugars (18.1)were higher than semsor reading and ketones of 2.4. So came out of looping setup, injected. Changed cannula etc.Stayed out of closed loop for several hours .But took most of day to get back to truly acceptable numbers. So moral is know what to do (or be able to look through flow chart or similar) if things go wrong. Cannula is always a weak link
 
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I think it’s completely normal to feel apprehensive @uselesspancreas

It would almost be more surprising if you weren’t a bit anxious about it.

My first experience of sensor-augmented pump was the Medtronic MM640G which had predictive low suspend. It worked really well for me. I absolutely loved turning off the alarms that told me when the pump was *doing something*, and then finding out with the on-screen prompts some hours later that the basal suspend had dodged a falling glucose and got me back mid range while I was busy doing other things. It was the first time a piece of diabetes kit was actively helping me by itself, rather than me having to make all the decisions. The MM640G caught lots of little dips below 4.0 for me, but of course it couldn’t catch them all.

My first experience of HCL was with the Tandem tSlim, which gave me the best numbers I’d ever had up to that point, especially overnight. My nights became beautifully boring. Whatever chaos had happened in the evening I’d wake to a steady 5.5-6.5ish every day, with virtually no alerts or alarms in the whole 4 years of nights. In the daytime however, the algorithm acted a little too gently, and a little to late for my diabetes (they all have their own quirks), so I had to rely on alarms more, which was quite fatiguing in the end.

I’m now back on Medtronic with the MM780G. This algorithm seems to suit my body better, and I can leave it to do its thing most of the time. I miss some of the flexibility of the tSlim, and have had to develop some workarounds, but overall I am preferring it. I spend less time thinking about my diabetes day to day, and my results with it are great 90% TIR, and only 1% of time below 4.0 over the last 14 days (which included several celebrations, meals out, beers, and takeaway).
 
Yes, it's absolutely OK to be anxious about looping.

[WARNING: don't try this without taking competent advice - and not from me!]

Having become exasperated waiting for my local ICB to approve my switch to Omnipod 5, a couple of month's ago I decided to have a go at DIY looping with my Omnipod Dash. It took me about a week to work up the courage and then another to build the app, and then I turned off the Omnipod PDM and with shaking hands activated the iPhone app. Wow, what a difference. My TIR is now 95% and my estimated HBA1C (according to Tidepool) is 6.2%. The algorithm is quite aggressive but it seems to suit me. I've seen a number of posts from DIY loopers who have subsequently switched to Omnipod 5 who are not convinced of its advantages - particularly because the algorithm is said to be very mild and conservative. So I'm no longer fussed about getting O5 - although using the unapproved tech of DIY is a bit troubling, and I haven't yet had the courage to confess my apostasy to my clinic DSN. I certainly wouldn't encourage anyone else to go down this route.

Yes, switching to looping is a big step but it has been worthwhile to me
 
Glad it is working so well for you @m1dnc

Not surprised it was a bit nerve wracking though!

Some clinics were fairly supportive of people trying the #wearenotwaiting approach a few years back, when the DIY options were forging ahead while device manufacturers were less able to keep up.
 
TBH it's worked very well for me. For the last few months I have been trying to lose weight and, as we all know, it's hard if not impossible to cut down on food and keep tight control. Before the DIY Loop, I reduced my basal and consequently leaned to towards running high. Since I've been looping, I've been able to cut my food intake down and keep an almost flat BG. The other thing I've noticed is that the algorithm seems to be able to compensate for sketchy carb counting. All good so far, and I've lost more than 15 kg. Just need to keep it down.
 
Completely understandable. For me the move across hasn't given me the wins I thought it would, I was happy with the pump having been MDI for most of the time I have been a diabetic. That was life changing for the better.
What are your actual concerns?
HCL overall is on par with how I was doing, on the Omnipod dash and libre 2, not worse and not better. But I have had tech issues, and a lot of faulty pods which had impacted my experience.
 
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Ok so today I had day one of pump upgrade to Looping.
I was disappointed to hear that the libre link app isn't compatible with the OP5 resulting in no alarms or information on my mobile.
It was suggested I carry the PDM around this isn't really an option it's huge and if I don't want to damage it whilst handling large animals etc.
But not being able to check my BG levels on my phone is a huge worry.
I was informed that they don't offer Dexcom due to issues with dexcom companies invoices/ paperwork.

It's certainly out a dampener on the upgrade.
 
Oh what a shame for you @uselesspancreas

The comment about Dexcom seems a bit iffy. Plenty of areas manage to deal with Dexcom perfectly fine (I self-funded Dex G6 for about 3 years before my funding came through on the tSlim)

Could you have a SpiBelt or similar to keep the PDM with you but round your back so it’s out of the way?

Is it Libre2+ you’ll be using? Are there any of those fancy watches that can take a feed of glucose data directly?

Hopefully compatibility issues might be sorted out with an update to LibreLink?
 
Oh what a shame for you @uselesspancreas

The comment about Dexcom seems a bit iffy. Plenty of areas manage to deal with Dexcom perfectly fine (I self-funded Dex G6 for about 3 years before my funding came through on the tSlim)

Could you have a SpiBelt or similar to keep the PDM with you but round your back so it’s out of the way?

Is it Libre2+ you’ll be using? Are there any of those fancy watches that can take a feed of glucose data directly?

Hopefully compatibility issues might be sorted out with an update to LibreLink?
Thanks for your reply.
Yes they're offering libre2+
I have a Google watch but it would only pick up librelink which is not compatible with OP5
The belt was an idea I considered but I don't even wear a belt on my jeans anymore as it kept catching my pump.

I've sent an email asking if I can have dexcom because I really find the alarms useful in stopping a hypo before it starts.
I'll eagerly wait for the return email.
 
Thanks for your reply.
Yes they're offering libre2+
I have a Google watch but it would only pick up librelink which is not compatible with OP5
The belt was an idea I considered but I don't even wear a belt on my jeans anymore as it kept catching my pump.

I've sent an email asking if I can have dexcom because I really find the alarms useful in stopping a hypo before it starts.
I'll eagerly wait for the return email.
Well when I moved over I was on the Libre 2 + plus O5 and honestly the connection of both to each other was so poor that they moved me over to the Dexcom g6 within a few months.

The PDM however for me is about the same size of my phone. Having 2 devices as you say isn’t ideal but I’ve even been running with them both in my leggings pockets and yeah it’s not ideal but it is liveable and there’s work rounds. They all come with comprises.
The phone app for O5 is a thing but it just doesn’t work in the UK, maybe it will over time?
 
I've sent an email asking if I can have dexcom because I really find the alarms useful in stopping a hypo before it starts.
I'll eagerly wait for the return email.

Good luck with your request. Make sure you stress the difficulties presented by the nature of your work. NICE Guidance often specifically mentions such things as add-on criteria.
 
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