Omnipod 5 and Libre 2+ a few thoughts

[PattiEvans]

No, the Omnipod personal diabetes manager (which is in fact an adapted phone, though it doesn’t function as a phone) does all the reading. But of course most of us still need to carry a phone.

 

[PhoebeC]

Yeah even the Omnipod dash is a separate PDM device, it’s not ideal but also not awful having 2 smalls things to carry around is not the end of the world. Less or the same as insulin pens and a blood glucose tester.

 

[PattiEvans]

@aflook how did you get on to start with? I mean the first 3 pods which are supposed to be learning. I'm just about to change to the 3rd pod and so far am quite unconvinced as BGs seem to be all over the place. I have been doing as my DSN told me and doing corrections based on the sensor reading and letting the PDM dictate any insulin doses, but even so I am still lurching from high to low.

 

[Richard F]

I'm on pod 3 and find it okay, (one pod positioned on my abdomen failed to communicate so changed early) BG more stable than previously, (particularly night-time) BG down a bit, but too early to tell.

My consultant said my biggest problem would be constant checking and fiddling, just sit on my hands. That's what I've been trying to do. I'm concentrating on accurate Boluses, albeit failed last night in a Thai restaurant.

Hardly any corrections or additional carbs, just hold my nerve (as much as I can) and let the machine do its thing.

 

[rebrascora]

I'm on pod 3 and find it okay, (one pod positioned on my abdomen failed to communicate so changed early) BG more stable than previously, (particularly night-time) BG down a bit, but too early to tell.

My consultant said my biggest problem would be constant checking and fiddling, just sit on my hands. That's what I've been trying to do. I'm concentrating on accurate Boluses, albeit failed last night in a Thai restaurant.

Hardly any corrections or additional carbs, just hold my nerve (as much as I can) and let the machine do its thing.

Must be a bit like being in a self drive car and seeing it heading towards the kerb..... not sure I could cope with sitting on my hands in those circumstances. I like having "control" too much.

 

[Richard F]

I know what you mean, I'm careful though. Tried out the activity setting today whilst hillwalking, quiet impressed.

 

[nonethewiser]

My consultant said my biggest problem would be constant checking and fiddling, just sit on my hands. That's what I've been trying to do. I'm concentrating on accurate Boluses, albeit failed last night in a Thai restaurant.

Was told by dsn that it can take up to 5 maybe 6 pod changes before things settle down, device has to build up a history on your insulin needs/delivery to establish a pattern. All data is stored in controller & passed on to each new pod when inserted so is stored nicely away.

Snartadjust tech in device adjusts insulin every 5 mins or something like that, using data from sensor it predicts where your bg will be in hours time, it's all clever stuff if you allow it to do it's thing.

 

[aflook]

It's a shame I wasn't offered any training, still not too difficult to work out, I'll try that breakfast thing.
I've not has any comms problems now both devices are on the same arm ( I've still a libre 2 on the other arm as a control check, it expires in a couple of days) Where are you wearing yours?

A couple of software tweaks would be useful, ie BG on the 1st page instead of tge time, and a couple of time segments for target ranges, so automatically going onto a different target range overnight.

I wonder if there's a suggestion box? Overall v happy though.


ETA I find accucheck mobile a decent BG meter for an active lifestyle. A single 50 test cassette with no need for fiddly strips.

I’ll ask about the meter. I wear my sensor on the same side as the pod, but don’t wear the pod on my arm. I had problems once over injecting at the same site so I rotate the pod between thigh, abdomen and back. I keep my arms for the sensors. Thanks for the replies btw.

 

[aflook]

Was told by dsn that it can take up to 5 maybe 6 pod changes before things settle down, device has to build up a history on your insulin needs/delivery to establish a pattern. All data is stored in controller & passed on to each new pod when inserted so is stored nicely away.

Snartadjust tech in device adjusts insulin every 5 mins or something like that, using data from sensor it predicts where your bg will be in hours time, it's all clever stuff if you allow it to do it's thing.

Ooh that’s worth knowing. Thanks.

 

[aflook]

I’ll ask about the meter. I wear my sensor on the same side as the pod, but don’t wear the pod on my arm. I had problems once over injecting at the same site so I rotate the pod between thigh, abdomen and back. I keep my arms for the sensors. Thanks for the replies btw.

Oops sorry posted too quickly. Maybe part of the upgrade or just fat fingers...

I'm on omnipod 5 with dexcom G6. The nurse did tell me on Friday that the NHS will pay for libre 2+ rather than me self funding so I'm v interested in exploring.

But did I read right that you can't use it just with a phone? So you have a separate controller for the omnipod and a separate reader for libre?

To your original point, the overnight control is a game changer for me. I pretty much know I'll wake up between 5 & 7 BS irrespective of exercise etc. Apart from a cheese and bread binge that is, that's just way too delayed a glucose release!

Glad you’ve found it good overnight. I’m getting similar levels. Yeah the lack of a phone app is bad news when that’s what you’re used to. On the plus side my phone battery lasts longer ! So you just need the pod controller which also connects to the sensor. When it’s in a good mood. (Which tbf is most of the time).

 

[aflook]

@aflook how did you get on to start with? I mean the first 3 pods which are supposed to be learning. I'm just about to change to the 3rd pod and so far am quite unconvinced as BGs seem to be all over the place. I have been doing as my DSN told me and doing corrections based on the sensor reading and letting the PDM dictate any insulin doses, but even so I am still lurching from high to low.

Actually it worked pretty well at first. Just recently I’ve had some episodes of high bgs Which don’t want to come down. Seems to be if they’re too high when I need to eat. I overrode to give a manual correction once and then woke up with a hyp. A couple of times it has switched to manual because of extended high bg but that seems to do the trick after 15 mins or so.

 

[PhoebeC]

Did yours look the same when you had that recent issue? Get that strong smell of insulin so it’s clearly not going in.
Might try and muddle through until that Tandem Mobi comes out. Tubed but looks like it’s pretty small so can be stuck on like a pod.

Yes, but mine end of more brownish blood than red, like I've had slow blood leaks for most of the time on.
The last one that leaked, was very damp underneath but as the seal was tight, no loose sticker at all it was so sodden with insulin under it and I had no idea. Normally it starts to peel off and I can smell insulin and feel the damp.

 

[PattiEvans]

My consultant said my biggest problem would be constant checking and fiddling, just sit on my hands. That's what I've been trying to do. I'm concentrating on accurate Boluses, albeit failed last night in a Thai restaurant.

I took that message very much on board during the training. On the first full day my BG rose and rose, and I avoided giving corrections until I just couldn't stand it any longer and did one. I contacted my DSN via email who said:

You just need to give corrections at present. You are still in limited automation mode remember so just keep giving corrections so it learns what you need.

So what @nonethewiser says is very true. What has become apparent to me is that my afternoon and early evening basal was not enough. I had lowered it a lot to prevent regular early evening hypos, but I think I'd gone overboard and my boluses were propping it up.

I think I'm struggling with it a bit because I did have pretty good control previously. I'm going to go with the flow and see what happens. This thread has been very helpful.

 

[PattiEvans]

Actually it worked pretty well at first. Just recently I’ve had some episodes of high bgs Which don’t want to come down. Seems to be if they’re too high when I need to eat. I overrode to give a manual correction once and then woke up with a hyp. A couple of times it has switched to manual because of extended high bg but that seems to do the trick after 15 mins or so.

The switching to manual does ring a bell from the training. Glad it is generally working for you.

 

[KS76]

Hi everyone.
I have tried omnipod 5 and libre 2 plus sensors just recently. I was on it for 4 weeks and have just, in the last couple of days gone back to the Dash.
Loads of problems, connection issues between pod and sensor. Could only get decent connection when both worn on arm. If I was to put pod on stomach I would loose connection between them both, over an hour sometimes. After a period of time it ruins your skin wearing them in same place continuously, so didn't like that.
High sugars was another issue, the automatic delivery just wasn't quick enough to correct this or stop it before it got too high, especially in the mornings when getting up.
I had pods that had alarms going off in the night with that piercing alarm sound, so had to change them early (happened 3 times). Think just faulty but don't know for sure! Had a sensor that just stopped working so had to replace early. Phoned Abbotts and the girl couldn't understand why I didn't have it linked to my phone in an app. I told her that it's used through the Omnipod 5 pdm as its a closed loop system. She said she couldn't replace as she wouldn't be able to find out the issue like you can with a phone app (no error codes etc) I was told to take it up with omnipod as its their pdm!!! Not helpful!!
My DSN was very helpful as I kept contacting her but she said she would contact the rep who we got the initial training from at the hospital to discuss all my problems with me but never heard anything. Very disappointing.

The only positive was I had less lows during the night. Now I'm back on the Dash I feel I have less stress and a lot less problems.

I felt like I was the only person with all these problems and no one could really advise me. Shame really as wanted to stay on it but couldn't put up with it any more unfortunately.
Hope other people on it have more success.

 

[PhoebeC]

@KS76 I am sorry you had all these issues. It is still very new technology.
Abbot should have done better, I would raise a complaint in writing if I was you.
I do find insulet so poor at customer service so this is one of my worries about HCL. The quality of the pods now is worst than I realised and it’s not easy or quick to report the issues.
My appointment with the consultant isn’t until
Feb 2025 so I think I’m a while off this myself.
Lots to consider

 

[BadaBing]

I felt like I was the only person with all these problems and no one could really advise me. Shame really as wanted to stay on it but couldn't put up with it any more unfortunately.
Hope other people on it have more success.

You weren't the only person having connectivity issues with the Omnipod 5 and Freestyle Libre 2 Plus hybrid closed loop.

There is a dedicated Facebook group for UK users of Omnipod 5. There is a large and growing body of anecdotal evidence concerning loss of connectivity between the Omnipod 5 pump and the Libre 2 Plus cgm.

The culprit appears to be the Bluetooth chip used in the Freestyle Libre 2 Plus sensor which isn't good enough (the Dexcom G6 cgm has significantly better Bluetooth apparently with less connectivity issues, but because Dexcom cgms are expensive very few local health authorities (Integrated Care Systems) in England are prepared to fund longterm Dexcom sensors for use as part of a hybrid closed loop with the Omnipod 5.

So the postcode lottery continues.

The Omnipod 5 and Freestyle Libre 2 Plus also does not have a follower app as of 7 August 2024, so if one is a parent or a caregiver who needs to follow your child's or caree's glucose data in real time, the Omnipod 5/Libre 2 Plus hybrid closed loop is not appropriate.

Again, there appears to be growing concern amongst parents and caregivers that no follower app is available for the Omnipod 5/Freestyle Libre 2 Plus.

A follower app is available if one uses the Omnipod 5 and Dexcom G6 hybrid closed loop, but some parents/caregivers are being told that their ICS won't fund the Dexcom sensors.

Some parents/caregivers may have the financial means to self-fund the Dexcom sensors on a longterm basis; a significant proportion won't be able to do so.

So the postcode lottery continues.

 

[PhoebeC]

You weren't the only person having connectivity issues with the Omnipod 5 and Freestyle Libre 2 Plus hybrid closed loop.

There is a dedicated Facebook group for UK users of Omnipod 5. There is a large and growing body of anecdotal evidence concerning loss of connectivity between the Omnipod 5 pump and the Libre 2 Plus cgm.

The culprit appears to be the Bluetooth chip used in the Freestyle Libre 2 Plus sensor which isn't good enough (the Dexcom G6 cgm has significantly better Bluetooth apparently with less connectivity issues, but because Dexcom cgms are expensive very few local health authorities (Integrated Care Systems) in England are prepared to fund longterm Dexcom sensors for use as part of a hybrid closed loop with the Omnipod 5.

So the postcode lottery continues.

The Omnipod 5 and Freestyle Libre 2 Plus also does not have a follower app as of 7 August 2024, so if one is a parent or a caregiver who needs to follow your child's or caree's glucose data in real time, the Omnipod 5/Libre 2 Plus hybrid closed loop is not appropriate.

Again, there appears to be growing concern amongst parents and caregivers that no follower app is available for the Omnipod 5/Freestyle Libre 2 Plus.

A follower app is available if one uses the Omnipod 5 and Dexcom G6 hybrid closed loop, but some parents/caregivers are being told that their ICS won't fund the Dexcom sensors.

Some parents/caregivers may have the financial means to self-fund the Dexcom sensors on a longterm basis; a significant proportion won't be able to do so.

So the postcode lottery continues.

This is very disappointing.

I know a few type 1s who are adults and share their libre with their relatives for different reasons, I don’t personally but I understand why people do.

 

[PattiEvans]

I rang Abbott about a failed sensor, no problem replacing it, although they did send me Libre 2 instead. I phoned again, they apologised and sent a Libre 2 plus.

 

[BadaBing]

This is very disappointing.

I know a few type 1s who are adults and share their libre with their relatives for different reasons, I don’t personally but I understand why people do.

Indeed, there are a number of perfectly valid reasons adult diabetics who are not vulnerable may want to share their glucose data in real time with loved ones/ trusted friends.

According to someone in the dedicated Omnipod 5 UK users Facebook group, even when Insulet (finally) release in the UK the Omnipod 5 apps for iPhones and Android smartphones (instead of having a separate controller), those apps won't fix the "no follower app" problem for the Omnipod 5/Freestyle Libre 2 Plus hybrid closed loop and allow Abbott's LibreLinkUp app to be used as a follower app. Reportedly this is because the Omnipod 5 smartphone apps are "closed" and won't share data with other apps on a person's mobile phone. This is ridiculous if it is correct.