Type 1 & low carb

[Evergreen]

@rebrascora you sound incredibly brave! I can see how the Libre is a curse and blessing all in one (I’m learning that every advance in diabetes care comes with positives and negatives), but going into the night without one is something I cannot imagine doing atm.
I can completely see how this could help and I understand why you do that occasionally. Hopefully I’ll feel ready for that at some point.

sometimes it feels like I’m sabotaging myself, but I really think it’s my threat system being in complete overdrive.

Your uncle sounds amazing and I can imagine that he’s been quite an example. Some people (including you all) seem so resilient and good at taking whatever happens with your blood sugar at face value. That’s what I aspire to. To be able to just react to whatever is happening without the additional over the top fear response. I’m hoping I can do that

 

[SB2015]

Some people (including you all) seem so resilient and good at taking whatever happens with your blood sugar at face value

That is after many years of managing this, and I still have days when diabetes just don’t behave, and sometimes I just sit down and have a good cry in frustration.

I would also vote to push for Levemir with a half unit pen whilst you wait for a pump. Although on paper the Absalgar is working for you, the emotional impact needs to be accounted for and Levemir would give you a lot more flexibility with smaller dose adjustments And I think this could ease your stress. Our clinic move everyone wanting to go onto a pump onto Levemir beforehand, as they think that it is the closest match that they can have to pumping whilst on injections.

When I first used the sensors I was amazed at what was happening between meals, and it certainly led to my micromanaging my diabetes. Whilst you have limited resources to make adjustments perhaps the sensor is not so helpful. Again it would be good to talk to your new team about this.

I am using the hybrid closed loop and it has made things a lot easier (most of the time - there are still blips) It has stopped me thinking about my diabetes as much, which is so much better for me emotionally.

 

[rebrascora]

It took me probably 2 years to be more relaxed about my levels and become comfortable and confident about injecting corrections when I needed them and not worrying about how much I needed but just accepting that my levels were high that day for some reason and I needed more. Learning to be a bit heavier handed with my bolus insulin was a turning point and I think that happened when I trialed Fiasp for the second time. The first time was 3 months of frustration because I was still frightened of it.
Libre allows me to be much more "gung ho" with the knowledge that I could always have a jelly baby or two if I have overdone it a bit and my low alarm goes off and thinking about it logically, that is quite an enjoyable prospect as I don't get to eat sweets at other times. I also feel better physically and mentally in the 4-7 range compared to being in double figures particularly, so I have learned to be much more proactive with corrections to keep me in range most of the time. Being low carb means that I don't get spikes above 10 very often so my levels tend to drift rather than spike or plummet and that gives me plenty of time to react with insulin or carbs.

I don't consider myself brave but I am very independent and can be bloody minded and I think that helps. 🙄

 

[Evergreen]

That is after many years of managing this, and I still have days when diabetes just don’t behave, and sometimes I just sit down and have a good cry in frustration.

I would also vote to push for Levemir with a half unit pen whilst you wait for a pump. Although on paper the Absalgar is working for you, the emotional impact needs to be accounted for and Levemir would give you a lot more flexibility with smaller dose adjustments And I think this could ease your stress. Our clinic move everyone wanting to go onto a pump onto Levemir beforehand, as they think that it is the closest match that they can have to pumping whilst on injections.

When I first used the sensors I was amazed at what was happening between meals, and it certainly led to my micromanaging my diabetes. Whilst you have limited resources to make adjustments perhaps the sensor is not so helpful. Again it would be good to talk to your new team about this.

I am using the hybrid closed loop and it has made things a lot easier (most of the time - there are still blips) It has stopped me thinking about my diabetes as much, which is so much better for me emotionally.

Thank you, I’m going to push for a pump. I understand it’ll come with it’s own challenges and I don’t know what it will be like until I’m starting on one but I truly believe it might make things a little easier for me.

I’m probably still going to be apprehensive about hypos, but I think it’s the fear of going low in the night that’s a real problem for me and I believe that can be alleviated with a pump.

I don’t have a fight left in me with my current team, but I’m hopeful about the new team as they seem a bit more responsive so far. So I’m going to push for a quick changeover and then see that as a fresh start

 

[Evergreen]

It took me probably 2 years to be more relaxed about my levels and become comfortable and confident about injecting corrections when I needed them and not worrying about how much I needed but just accepting that my levels were high that day for some reason and I needed more. Learning to be a bit heavier handed with my bolus insulin was a turning point and I think that happened when I trialed Fiasp for the second time. The first time was 3 months of frustration because I was still frightened of it.
Libre allows me to be much more "gung ho" with the knowledge that I could always have a jelly baby or two if I have overdone it a bit and my low alarm goes off and thinking about it logically, that is quite an enjoyable prospect as I don't get to eat sweets at other times. I also feel better physically and mentally in the 4-7 range compared to being in double figures particularly, so I have learned to be much more proactive with corrections to keep me in range most of the time. Being low carb means that I don't get spikes above 10 very often so my levels tend to drift rather than spike or plummet and that gives me plenty of time to react with insulin or carbs.

I don't consider myself brave but I am very independent and can be bloody minded and I think that helps. 🙄

Haha well I do consider you brave, and I aspire to deal with this disease in a similar way in the (hopefully) near future.

 

[rebrascora]

Just as a matter of opinion, I don't consider diabetes a "disease". It is just a condition that I manage and in reality, since diagnosis I am fitter and healthier and eat far better than I did before, so in many respects I believe that my diabetes may well have extended my lifespan and improved my general health and quality of life. Maybe that is a reflection of me being a sad individual before but mostly I am healthier as a result and I think that was why my uncle was still cycling solo at 80, because he needed to look after himself and keep himself fit in order to help manage his diabetes. Not saying I wouldn't be very happy if I was cured tomorrow, but really don't believe I would have made the lifestyle changes I have if it wasn't for my diagnosis or having to think about everything I put in my mouth.

 

[Inka]

@Evergreen Although we all have Type 1, we’re all individuals and we’re all dealing with different things, both with regard to diabetes and in our lives in general. We are all warriors 🙂 Type 1 is hard. I’ve had it almost 30 years and it’s still hard some days. You’re dealing with it and, despite what you think, you’re doing well. Just dealing with the whole stuff each day is a victory.

I turned down a closed loop because I felt it would make me more anxious handing over control like that. What has helped me enormously is my Dexcom G7. It’s a vast improvement on the Libre and is amazingly accurate. I sleep better as I can trust it to watch over me. That and my pump bring me so much relief and reassurance. I know my pump will give me the tiny amounts of insulin I need hour by hour (sometimes in the night I need barely any insulin) and that my Dexcom will alert me to Lows, Urgent Lows, Falling Fast, etc. If your fear of hypos is paralysing and affecting your mental health, you could see if a Dexcom would be available to you.

 

[Evergreen]

I’ve actually just been prescribed a dexcom one. I had hoped for a G6 or G7, but the nurse needs to discuss if I qualify for one of them. In the meantime she’s changing me over to a dexcom one. Hopefully that’ll help

 

[nonethewiser]

I’ve actually just been prescribed a dexcom one. I had hoped for a G6 or G7, but the nurse needs to discuss if I qualify for one of them. In the meantime she’s changing me over to a dexcom one. Hopefully that’ll help

Well it's a stepping stone to G6 or G7.

If Dex 1 is even nearly as good as Dex G6 then you won't be disappointed, so quite sure it will help matters for you.

 

[Proud to be erratic]

I’ve actually just been prescribed a dexcom one. I had hoped for a G6 or G7, but the nurse needs to discuss if I qualify for one of them. In the meantime she’s changing me over to a dexcom one. Hopefully that’ll help

Make sure your phone is compatible with Dexcom One. An easy check is to try and download the Dex One app; if your phone does the instal - then it should be fine. Otherwise you will need to self-fund the Receiver (equivalent to Libre's Reader) unless you can convince your prescriber to place an order for a Receiver. In my regional ICB the Dex One Receiver is simply not listed on the ICB's ordering system and so no cade available to order against.

Dex One is a "no-extra-cost" alternative to Libre 2. I had Libre 2 for over 18 months before the prescribing rules changed and I could make the swap. I needed to change since my body and Libre 2 were fairly incompatible - but I persisted with L2 since at that time there was no NHS alternative and even an unsatisfactory CGM was better than none. Dex One was a bit better for compatibility with me, but still not great and still sensors failing. However Dex One is not as refined as L2 in terms of its functionality. There is no capability within the app to enter any data - no record of carbs being eaten nor insulin being taken and none of the handy other notes (memory joggers). Also Dexcom don't allow you to take screenshots, citing that this is a security risk; nonsense of course, but surprisingly unhelpful when you want to share a moment with anyone, or just keep a snapshot of something helpful etc. Dex One is a 2 part system, comprising a sensor that lasts 10 days and a transmitter that clips on top of the sensor. The transmitter once activated lasts 90 days, so every 10 days there is the extra fiddle of removing both bits, throwing the sensor and transferring the transmitter onto a fresh sensor. Then a 2hr warm up wait time. This all adds to my feeling that it is not so refined as L2. All in all I endured my first 90 days and started the next. But the second transmitter failed and I made a decision to give in, self-fund the Dexcom G7 and abandon Dex One.

The difference (improvement) is incredible. G7 can be calibrated so that the interstitial readings are aligned to actual BG. The unit is a combined sensor and transmitter, ie akin to L2. This needs replacing every 10 days, but the warm up time is under 30 mins. Today it was effectively instant, since I normally fit the replacement sensor up to a day ahead of it being needed to replace the outgoing sensor and some of the 30 min warm up time is already naturally used up. The 2 or 3 mins to tell the app the new code and to accept the Bluetooth pairing code resulted in new readings straightaway. I then have to calibrate usually twice after activating (a few hours apart) and I then mentally accept the interstitial display is mirroring actual BG. It isn't identical continuously but more than close enough for me to stop even thinking about this. I can finger prick 2 or even 3 fingers inside 1 minute and get 3 different readings - each within the claimed accuracy levels of the meter.

Suddenly using CGM is a LOT LESS stressful for my D management. Decent reliability from the G7, with only a few failures; once calibrated and I'm reassured about that - I no longer need to finger prick. I just look at my smart watch which was easily and legally configured to relay from my phone and I can make rapid insulin dosing or snacking decisions as well as seeing trend behaviour etc. No more fumbling for my phone and having to wake it up to see what the alert is trying to tell me. This all might sound pretty trivial - but it really does make a huge difference. Slight digression, but my Consultant told my wife that every day as someone who is insulin dependent I am making 305 daily decisions and the disruption to me each and every day ought not to be underestimated.

I've asked my Consultant if NHS funding for G7 (or G6) can be approved for me and that process takes time. Its also not a certainty since the ICB is currently strangling extra fund requests apparently.

I hadn't detected from your previous posts that Libre 2 was a particular problem for you. Why the request to change to Dexcom? Or were you targeting getting G6 or G7 and that has backfired slightly? If Dex One doesn't work out quite so well for you don't hesitate to ask to change back without prejudice to your request to get onto G6 or 7.

 

[Bruce Stephens]

Make sure your phone is compatible with Dexcom One.

For Android (including for officially unsupported devices) there's a build your own Dexcom app (which I think unlocks some features, too), but it's unsupported, of course.

 

[Evergreen]

@Proud to be erratic I didn’t actually request a dexcom, but I think my nurse got a bit confused. She told me she could give me the dexcom one and it would help my anxiety with the additional fast drop alarms. I had a look on the website and noticed those alarms don’t exist on the dexcom one, so spoke to a nurse again today who said that they can use the dexcom one as a bit of a gateway to a G6 or G7.

I don’t have any issues with the Libre however and use it with Suggah which is prefer. Would you know whether I could use Suggah with the dexcom one at all?

 

[Proud to be erratic]

Well it's a stepping stone to G6 or G7.

If Dex 1 is even nearly as good as Dex G6 then you won't be disappointed, so quite sure it will help matters for you.

In my opinion Dex One isn't anywhere near as good as L2 - if L2 actually is compatible with your body.

@Proud to be erratic I didn’t actually request a dexcom, but I think my nurse got a bit confused. She told me she could give me the dexcom one and it would help my anxiety with the additional fast drop alarms. I had a look on the website and noticed those alarms don’t exist on the dexcom one, so spoke to a nurse again today who said that they can use the dexcom one as a bit of a gateway to a G6 or G7.

I don’t have any issues with the Libre however and use it with Suggah which is prefer. Would you know whether I could use Suggah with the dexcom one at all?

Afraid I don't know. But if you can make the time to phone Dexcom customer services, or email them, and ask - that might clarify this. But a first step would be to check your phone can instal the Dex One app. 'Cos if it can't,its probably a non-starter for you. I'll have a look in the Dex One User handbook tomorrow and see what that claims.

Actually your mention of alarms (alerts) reminds me that they were also not particularly great on Dex One. I've become so enthusiastic about G7 I slightly lost the plot in remembering the details and not so good bits about Dex One.

I do think that the Nurse you spoke to has really misappreciated matters in that Dex One is not a gateway - EXCEPT as a principle that L2 wasn't meeting your alert needs and once you've tried Dex One I think you would then be in a position to say and neither does Dex One. But whether that would provide a convincing case when the group or Committee that scrutinises applications for something a bit beyond the NICE Guidelines get to your case ..... I have no idea how that would pan out. Because of my missing panc'y there is acknowledgement that my D is relatively brittle and I have experienced really rapid drops and that has led to a certain amount of consideration for finding better solutions for me; but no certainty yet.

 

[Proud to be erratic]

Just to confirm that the Dex One User Guide does not claim very much in respect of alarms and that your existing understanding is correct and that there are no fast drop alerts with Dex One.

 

[Tdm]

Just to confirm that the Dex One User Guide does not claim very much in respect of alarms and that your existing understanding is correct and that there are no fast drop alerts with Dex One.

I have g6 with the various fast drop/rise alarms but, to be honest, they aren't as useful as you imagine. What i find very useful is you can set up different alarm schedules....i alarm at under 5 during the day (when bolus insulin active) and lower at night (when changes are less sudden)
Phone compatibility isn't so much of an issue with the build your own app...sure, its not supported, but i've had no issues, which is more than people can say for the official libre app!

 

[Inka]

I think it depends on people’s levels of hypo anxiety and how erratic their blood sugars are. I don’t get many Falling Fast alarms but the ones I’ve got have been very useful, allowing me to ward off hypos and choose the best hypo treatment. The Rising Fast alarm is useful too. I like the fact you can configure the alarms, as you say, and I too have different levels for day and night.

I’d also add @Evergreen that if you did qualify for a G7, you can request the Dexcom receiver too, which is excellent. No worries about phone comparability then and I find it very, very good for staying connected to the sensor.

 

[Proud to be erratic]

I have g6 with the various fast drop/rise alarms but, to be honest, they aren't as useful as you imagine.

Yes, fully agree with that. Indeed when my BG is rapidly dropping I almost get too many alerts and while responding to the first alert the app is telling me the same thing again, but in a slightly different way and is just adding to the stress of that moment. Of course such alerts occur when I'm active and busy and need to stop what I'm doing. They never seem to happen when I'm quietly sitting in a comfortable place!

What i find very useful is you can set up different alarm schedules....i alarm at under 5 during the day (when bolus insulin active) and lower at night (when changes are less sudden)

Also strongly agree with that. I have upper alerts for going lower and further alerts for lower thresholds. Particularly in daytime, when it is easy to briefly disregard a first alert and inevitably need a more urgent reminder - well it certainly is for me!

Phone compatibility isn't so much of an issue with the build your own app...sure, its not supported, but i've had no issues, which is more than people can say for the official libre app!

Point taken about the Libre app recent fiascoes, although I was luckily spared those.
I'm not at all confident about embarking on a build my own app. I frequently find this sort of tech vocabulary confusing and assumes I know what is intended - when I definitely don't know and tells me to do something from a particular menu, when such an option is simply not on that menu. Further confused by having different screens with instructions and the app being 'built' on one device. None of this is intuitive for me; I realise that others can find it all pretty intuitive.

 

[Proud to be erratic]

I’d also add @Evergreen that if you did qualify for a G7, you can request the Dexcom receiver too, which is excellent. No worries about phone comparability then and I find it very, very good for staying connected to the ssensor.

I think the availability of Dexcom Receivers is a post-code lottery. My regional ICB definitely did not have Dexcom Receivers showing last week on their vocab lists of medications. I asked my Pharmacy if they could get me a G7 Receiver and they said even if prescribed there was no contract between their Head Office and Dexcom for Receivers and I would have to buy it myself from Dexcom. So they presumed it would have to be obtained by my Consultant under some form of arrangement between the Hospital and Dexcom. Yet they can provide Dex One, G6, or G7 sensors to fulfill a prescription request.

 

[rayray119]

Make sure your phone is compatible with Dexcom One. An easy check is to try and download the Dex One app; if your phone does the instal - then it should be fine. Otherwise you will need to self-fund the Receiver (equivalent to Libre's Reader) unless you can convince your prescriber to place an order for a Receiver.

My hospital gave me a receiver for dexcom one when they gave me the stater park.

 

[nonethewiser]

I have g6 with the various fast drop/rise alarms but, to be honest, they aren't as useful as you imagine. What i find very useful is you can set up different alarm schedules....i alarm at under 5 during the day (when bolus insulin active) and lower at night (when changes are less sudden)
Phone compatibility isn't so much of an issue with the build your own app...sure, its not supported, but i've had no issues, which is more than people can say for the official libre app!

Can I ask why you don't find fast rise fall alarm useful.