night time lows and annoying libre!

[Woodywoodpecker]

I wonder if there is a confusion between low range and low alarm.
The range is used to determine Time in Range whereas the alarm is used to tell you when you are nearing the low range and may want to treat. These two things do not have to be the same.
I can understand your doctor may want to track Time in Range but, as others have said, the alarm threshold should be your choice. Maybe your doctor does not realise these are different values.

To be honest didn’t think much off her, think I have learned more on here. I asked her if the heat effects glucose, she said no but have seen post on here saying it does. Few other things have been the same, I’ve one last appointment at hospital then that’s me finished

 

[rebrascora]

I used to be terrified off the lows in the beginning, I know it’s stupid but thought I wud die,

Not stupid at all. I think it would be extremely unusual not to be frightened of hypos and in reality they can kill you if untreated, so definitely not something to be cavalier about even when you have gained confidence detecting and treating them.

I very much agree with @Bruce Stephens comment above. Your CGM is a tool to use as you find most beneficial, because you live with your diabetes every minute of every day and night, so the doctor would have to have some very good reasoning that made sense to me and was something I hadn't considered and the risks would have to be minimal for some clear and obvious gain, to make me alter something like that. By all means discuss it with them at your next visit and clarify their reasoning and explain why you don't think it is a good idea, but I wouldn't change it without clear understanding and agreement of what benefit there would/might be in doing so, over what detrimental effect it might have.

 

[Woodywoodpecker]

Sure, might be fine at 4. The problem is if Libre says I'm 4 (and is correct) I might easily be 3 in 15 minutes time. It's just too late to react in sensible ways if I'm only notified at 4.

If I'm lazing around on a weekend it might be fine: I can drink and/or eat something and lie down for half an hour. If I'm out dancing somewhere I can certainly sit down for a bit but I don't want to lie down, and don't want to sit around for half an hour: I'll miss dancing. Similarly when I'm at work, or walking somewhere, or shopping. It's much more useful to me to know at a higher level than 4, even though I'm not going to panic when I drop down to 4 (because I'll already have reacted).

If I had an appointment where someone suggested that I'd be pushing back, explaining why I set the alarms as I do and wanting them to justify their advice. (I'm fine with advice: quite often the DSNs have had really helpful advice, based on the experience of lots of their patients. But I'm not taking it without an explanation.)

I just thought everyone must have theirs set at 4.2, to be honest I didn’t know she could check what it was at. I wud be much happier while at work and out and about if it was higher

 

[Woodywoodpecker]

Not stupid at all. I think it would be extremely unusual not to be frightened of hypos and in reality they can kill you if untreated, so definitely not something to be cavalier about even when you have gained confidence detecting and treating them.

I very much agree with @Bruce Stephens comment above. Your CGM is a tool to use as you find most beneficial, because you live with your diabetes every minute of every day and night, so the doctor would have to have some very good reasoning that made sense to me and was something I hadn't considered and the risks would have to be minimal for some clear and obvious gain, to make me alter something like that. By all means discuss it with them at your next visit and clarify their reasoning and explain why you don't think it is a good idea, but I wouldn't change it without clear understanding and agreement of what benefit there would/might be in doing so, over what detrimental effect it might have.

I have just remembered what she said about putting it down, she said it must be going off all the time, which it wasn’t

 

[rebrascora]

To be honest didn’t think much off her, think I have learned more on here. I asked her if the heat effects glucose, she said no but have seen post on here saying it does. Few other things have been the same, I’ve one last appointment at hospital then that’s me finished

Heat tends to affect insulin sensitivity rather than glucose, so maybe she didn't quite understand what you were asking. It is also important to note that it can affect people in opposite ways, so some people will become more responsive to their insulin in hot weather and will be more prone to hypos and others will get stressed by the heat and their levels will go higher instead of lower, because their liver is responding to the stress. If you are doing a physically exertive job in a hot environment that you are not used to, your levels might go high even if you normally experience more insulin sensitivity in a hot climate on holiday where you are relaxing. I guess what I am saying is that it is a much more complex question so there is no simple answer. Like everything with diabetes, it depends on the person and the circumstances.

However I agree that there is far more depth of knowledge and experience to benefit from here on the forum than a 10-15 min appointment once or twice a year with a doctor at the hospital. It must be equally difficult for them to understand your circumstances in so short a time and give useful advice. I think this is why we should at least see the same doctor or consultant each time to enable both parties to develop a rapport and understanding. My next appointment on 24th December is with a new consultant (I am guessing my previous one whom I had developed a good rapport with, has retired or moved on) and I am not looking forward to it as we will both be starting from scratch, to understand the other's views and perspective.

 

[Woodywoodpecker]

Heat tends to affect insulin sensitivity rather than glucose, so maybe she didn't quite understand what you were asking. It is also important to note that it can affect people in opposite ways, so some people will become more responsive to their insulin in hot weather and will be more prone to hypos and others will get stressed by the heat and their levels will go higher instead of lower, because their liver is responding to the stress. If you are doing a physically exertive job in a hot environment that you are not used to, your levels might go high even if you normally experience more insulin sensitivity in a hot climate on holiday where you are relaxing. I guess what I am saying is that it is a much more complex question so there is no simple answer. Like everything with diabetes, it depends on the person and the circumstances.

However I agree that there is far more depth of knowledge and experience to benefit from here on the forum than a 10-15 min appointment once or twice a year with a doctor at the hospital. It must be equally difficult for them to understand your circumstances in so short a time and give useful advice. I think this is why we should at least see the same doctor or consultant each time to enable both parties to develop a rapport and understanding. My next appointment on 24th December is with a new consultant (I am guessing my previous one whom I had developed a good rapport with, has retired or moved on) and I am not looking forward to it as we will both be starting from scratch, to understand the other's views and perspective.

It was more when I went to bed was going higher the few days heat we had, was waking up sweating and glucose higher than normal. Mibi I didn’t explain myself clearly, that’s what I like about this forum can ask questions at anytime, don’t have to wait till next appointment

 

[rebrascora]

Totally agree with you about asking as many questions as you like whenever you like and you can ask the same question several times in different ways until you are sure that people are fully understanding the question and giving you an appropriate answer.

Going higher in bed could be because you are uncomfortably hot and not sleeping well and under stress and causing your liver to release extra glucose. I find that if my levels are above 8 through the night I sleep badly and sleeping badly potentially makes them higher. Whereas I have my best, most restful sleep between high 3s and 5 and yes that is below 4 but it is quite natural for non diabetic people to drop below 4 during the depths of sleep so it isn't necessarily unhealthy, it is just that we as insulin users, need to preserve our hypo awareness which can get eroded if we spend too much time below 4.

 

[Woodywoodpecker]

Totally agree with you about asking as many questions as you like whenever you like and you can ask the same question several times in different ways until you are sure that people are fully understanding the question and giving you an appropriate answer.

Going higher in bed could be because you are uncomfortably hot and not sleeping well and under stress and causing your liver to release extra glucose. I find that if my levels are above 8 through the night I sleep badly and sleeping badly potentially makes them higher. Whereas I have my best, most restful sleep between high 3s and 5 and yes that is below 4 but it is quite natural for non diabetic people to drop below 4 during the depths of sleep so it isn't necessarily unhealthy, it is just that we as insulin users, need to preserve our hypo awareness which can get eroded if we spend too much time below 4.

Totally agree with you about asking as many questions as you like whenever you like and you can ask the same question several times in different ways until you are sure that people are fully understanding the question and giving you an appropriate answer.

Going higher in bed could be because you are uncomfortably hot and not sleeping well and under stress and causing your liver to release extra glucose. I find that if my levels are above 8 through the night I sleep badly and sleeping badly potentially makes them higher. Whereas I have my best, most restful sleep between high 3s and 5 and yes that is below 4 but it is quite natural for non diabetic people to drop below 4 during the depths of sleep so it isn't necessarily unhealthy, it is just that we as insulin users, need to preserve our hypo awareness which can get eroded if we spend too much time below 4.

I think it’s the diabetes that’s stressing me out, I’m not as bad as the beginning hopefully will relax more with it all soon. I do have days that I find I have to eat more without injecting to keep glucose up

 

[Lucyr]

That’s what I thought, thought about putting it up and then down when had hospital appointments

Don’t put it down for hospital appointments just tell them you like it where it is thanks

 

[everydayupsanddowns]

I have just remembered what she said about putting it down, she said it must be going off all the time, which it wasn’t

Ah OK, it sounds like she was worried about alarm fatigue. you getting alerted when actually you didn’t need to do anything, and the alert is just an annoying ‘nag’. I certainly experienced that at times on Dexcom alerting at 5.2.

Another factor of Libre alarms (unless things have changed since i last used Libre) is that they didn’t re-sound unless you went back above the threshold. so a long slow drift downwards with a higher alert setting could mean you decide you don’t need to act, and then keep drifting down for hours and never get another ‘early warning’.

There’s merit in thst thought, but 4.2 really is only a hypo alarm (you are likely to already be below 4.0 when it sounds). It doesn’t allow any time for you to prevent the low happening. So it’s using the function in a different way.

 

[SB2015]

I think it is often the case that HCPs are working from a list numbers rather than experience, and as others have said 4.2 is a bit late to give a warning. I find that I tweak my alerts to suit me. It is helpful to have an early warning if going low so that I can do something to avoid a hypo. It can mean that I get more alarms but can be worth it, especially if I am going to be driving, and certainly don’t want to have to interrupt that.

It is your diabetes and you that is managing it day to day, so as @Lucyr said just tell them what your setting is and why at the next appointment. It may well help them to understand why this works better for you.

 

[Woodywoodpecker]

I think it is often the case that HCPs are working from a list numbers rather than experience, and as others have said 4.2 is a bit late to give a warning. I find that I tweak my alerts to suit me. It is helpful to have an early warning if going low so that I can do something to avoid a hypo. It can mean that I get more alarms but can be worth it, especially if I am going to be driving, and certainly don’t want to have to interrupt that.

It is your diabetes and you that is managing it day to day, so as @Lucyr said just tell them what your setting is and why at the next appointment. It may well help them to understand why this works better for youi

I think it is often the case that HCPs are working from a list numbers rather than experience, and as others have said 4.2 is a bit late to give a warning. I find that I tweak my alerts to suit me. It is helpful to have an early warning if going low so that I can do something to avoid a hypo. It can mean that I get more alarms but can be worth it, especially if I am going to be driving, and certainly don’t want to have to interrupt that.

It is your diabetes and you that is managing it day to day, so as @Lucyr said just tell them what your setting is and why at the next appointment. It may well help them to understand why this works better for you.

I have not got back to my driving, had a stroke few years ago and after that my driving has suffered through anxiety. What do you set yours to while driving, really want to get back to it

 

[Bruce Stephens]

Another factor of Libre alarms (unless things have changed since i last used Libre) is that they didn’t re-sound unless you went back above the threshold. so a long slow drift downwards with a higher alert setting could mean you decide you don’t need to act, and then keep drifting down for hours and never get another ‘early warning’.

The same isn't true for some of the other (unapproved) apps. Juggluco will keep giving alarms if I continue to go lower (which occasionally happens); I'm not sure exactly the rules it uses (I don't think the other alarm levels are specifically configurable). I think Xdrip+ allows multiple (configurable) alarms, and may well have automatic ones too.

 

[rebrascora]

Yes, the lack of a follow up alarm on the Libre is why I don't have it set any higher than 4.5 because at 4.8 or above I really do not want to simply treat it and if I get distracted and it continues down, I end up with more hypos rather than less. I also get my best sleep below 5, so really don't want an alarm too high.

 

[everydayupsanddowns]

The same isn't true for some of the other (unapproved) apps. Juggluco will keep giving alarms if I continue to go lower (which occasionally happens); I'm not sure exactly the rules it uses (I don't think the other alarm levels are specifically configurable). I think Xdrip+ allows multiple (configurable) alarms, and may well have automatic ones too.

Yes several systems seem to have a ‘repeat’ setting, where the alert re-sounds if conditions are still met a set number of minutes after it first was triggered.

While Libre would remind you until you acknowleged the alert, my recollection is that the alert only reset to become ‘live’ again if you went back above the threshold.

They may have updated their software though, this was pretty early on!

 

[Bruce Stephens]

While Libre would remind you until you acknowleged the alert, my recollection is that the alert only reset to become ‘live’ again if you went back above the threshold.

They may have updated their software though, this was pretty early on!

I think the official app is the same. (It may be that the Libre 3 app is different.)

 

[rebrascora]

I think the official app is the same. (It may be that the Libre 3 app is different.)

Bruce, do you have Libre 2+ yet and if so, has this situation of needing to come back up in order to trigger the alarm possibly been address on that model. I am only using the reader and it doesn't reset once you acknowledge the alarm, unless you rise above the threshold.

 

[everydayupsanddowns]

I am only using the reader and it doesn't reset once you acknowledge the alarm, unless you rise above the threshold.

Seems such an obvious thing to fix, certainly in versions of the app!

 

[Bruce Stephens]

Bruce, do you have Libre 2+ yet and if so, has this situation of needing to come back up in order to trigger the alarm possibly been address on that model. I am only using the reader and it doesn't reset once you acknowledge the alarm, unless you rise above the threshold.

I do have the Libre 2+. I've not noticed any difference in behaviour, but I only use Juggluco for the alarms. I've no idea how LibreLink or the Reader behave in that respect.

 

[rebrascora]

I suppose it depends if they have been given feedback on it as being problematic and if most of the techy people who use Libre use other apps, then Abbott probably haven't received feedback that it is an issue. I know that the reader is not upgraded for the Libre 2+ so I suppose I won't see any difference when I get the Libre 2+ and I really don't like using my phone with the app although I will if I absolutely have to. It doesn't bother me too much as I don't have any great fear of hypos, except the odd nasty one but it would certainly be useful to have a repeat on that low alarm and I am pleased to read in this thread that I am not the only one who has had issues with that feature.

As an example, last night the low alarm went off at 4am with a 4.4mmols but I really didn't want to take anything as my levels have been rising more on a morning recently and I sleep really well at that level plus Libre reads low for me so likely nearer 5.4, so I went back to sleep and then woke up at 6.30am on 2.9 according to Libre 🙄... which will not have been quite that bad (probably mid 3s in reality) but I was definitely hypo. Ate 2 JBs and was back to sleep within minutes and a nice 5.0mmols when I woke up later, so I definitely overcooked my evening Levemir dose last night but I hadn't had any significant exercise for a few days plus the rise I have been seeing towards morning recently, so I upped it a unit..... Can't always get it right! If it had alarmed again say half an hour later I could have saved myself a couple of hours in "the red".