Can I set up my libre without a nurse?

[everydayupsanddowns]

That's reassuring to hear - I've been waking up feeling like I have a mild hangover most days, which I am presuming is the night time hypos (I don't drink!)

Let us know how you get on @StephanieMLW

And yes… you aren’t alone in it taking a while to pluck up the courage to apply them. Not helped (for me) by the fact that it takes a fair bit of pressure for the applicator to ‘fire’. 😱

Interestingly according the the product development boffins I’ve chatted to, the big ‘click’ you hear is actually the withdrawal. The insertion makes very little noise apparently

 

[Rob Oldfield]

Hi @StephanieMLW ... just to check something... have you figured out how to set up alerts on the Libre?

 

[rebrascora]

My biggest fear on my first few Libre sensors was that I would make a mess of it and waste £50 worth of sensor that I could ill afford. Took me ages to psych myself up, but I reasoned that I was also wasting it leaving it sitting in the box. I read through the instructions numerous times and took it one step at a time. I think now watching You Tube tutorials would be a more reassuring way to do it.

 

[rayray119]

Given how many people self fund Libre, you should be able to set it up yourself.
However, some areas won't prescribe it until you have had the training.
I also had to sign a form to confirm that I would scan at least 3 times a day, report failures to Abbott, etc.

Wow only 3 when I was on the libre I had sign something saying I would scan at least 8 times a day.

 

[rebrascora]

Wow only 3 when I was on the libre I had sign something saying I would scan at least 8 times a day.

The 3 times a day is to ensure you catch as much data as possible ideally scanning every 8 hours to collect all the data. It is the absolute bare minimum, not the number of times they would ideally like you to scan or a recommendation of the number of times to scan.

 

[rayray119]

The 3 times a day is to ensure you catch as much data as possible ideally scanning every 8 hours to collect all the data. It is the absolute bare minimum, not the number of times they would ideally like you to scan or a recommendation of the number of times to scan.

Interesting My nurse at the time said scanning at least 8 times a day was a requirement to keep the libre. Although unfortunately it didn't seem to suit me(I mean as they never lasted)

 

[Bruce Stephens]

Interesting My nurse at the time said scanning at least 8 times a day was a requirement to keep the libre. Although unfortunately it didn't seem to suit me(I mean as they never lasted)

Yes, before April 1 there were conditions, and that was one of them. (The idea was not to waste money on people who didn't seem to be using the things.) I'm sure it varied between CCGs (and between patients) but that was one of the conditions I had to agree to. (At the time I was scanning ~40 times a day, so it wasn't really an issue.)

 

[StephanieMLW]

Hi @StephanieMLW ... just to check something... have you figured out how to set up alerts on the Libre?

Hi Rob, yes I’ve got them set up 🙂 I’ve currently got my low alert set to 4.3, so that I have a chance to address my sugars if they’re dropping towards a hypo (due to my lack of awareness), which has helped me avoid full hypos a few times. I’m not always entirely sure what to do when it gives me a ‘high’ alert, but I’ve found I’m quite responsive to exercise so it generally means my dog gets an extra walk, which he’s happy about!

I’ve also set the alerts up on my husbands phone too - I think as I’m still very new to this it gives my family peace of mind.

 

[Rob Oldfield]

Hi Rob, yes I’ve got them set up 🙂 I’ve currently got my low alert set to 4.3, so that I have a chance to address my sugars if they’re dropping towards a hypo (due to my lack of awareness), which has helped me avoid full hypos a few times. I’m not always entirely sure what to do when it gives me a ‘high’ alert, but I’ve found I’m quite responsive to exercise so it generally means my dog gets an extra walk, which he’s happy about!

I’ve also set the alerts up on my husbands phone too - I think as I’m still very new to this it gives my family peace of mind.

Excellent stuff. You will hopefully find that, over time, avoiding hypos will improve your awareness. Highs are far easier to deal with if you have a pump where it's easy to take a quick correction dose (though that still does mean, of course, you have to take the dog out for the extra walk).

 

[Bruce Stephens]

I’m not always entirely sure what to do when it gives me a ‘high’ alert, but I’ve found I’m quite responsive to exercise so it generally means my dog gets an extra walk, which he’s happy about!

Yes, I used to have mine at 12, but someone suggested it's more useful as a warning that you forgot your bolus and to have it quite high (mine's currently 15).

I think I was better with it at 12 and as you suggest maybe use it as a trigger for a quick walk or something. (I don't forget to bolus nearly often enough to worry about that!) (By the time Libre reads 15 it can take some effort to lower it (extra bolus and a bit of exercise) whereas at 12 things are usually much easier.)

 

[Proud to be erratic]

Hi Rob, yes I’ve got them set up 🙂 I’ve currently got my low alert set to 4.3, so that I have a chance to address my sugars if they’re dropping towards a hypo (due to my lack of awareness), which has helped me avoid full hypos a few times. I’m not always entirely sure what to do when it gives me a ‘high’ alert, but I’ve found I’m quite responsive to exercise so it generally means my dog gets an extra walk, which he’s happy about!

I’ve also set the alerts up on my husbands phone too - I think as I’m still very new to this it gives my family peace of mind.

Hello Stephanie,

I have my low alarm set at the upper limit of 5.6. That gives me the maximum time to respond and manage my BG well before I get even near hypo. Also, your sensor is reading your interstitial blood glucose (BG) which lags your actual BG by anything from 2.5 minutes to 15. So if you should be falling rapidly an alarm at 4.3 may only be confirming what your body should already be telling you - but you said your awareness is not good. Further reason for a higher alarm threshold.

The great thing about Libre is being able to get ahead of what is happening with your BG and that comes from looking at the trend arrows just as much as the actual number displayed. Indeed, neither Libre or any blood testing meter are really accurate (and for that to be so the manufacturing costs would be prohibitive). So scrutiny or comparison of a Libre reading against a finger prick reading (only doable when the trend arrow is horizontal and indicating not much change is happenening at that moment) could mislead you anyway. There is a view that either of such numbers (Libre and test meter) should be rounded up or down to the nearest whole number anyway, since that reflects the maximum accuracy that can come from the permitted tolerance of such devices. So 4.3 may sound very accurate, but it really isn't.

Coming back to an alarm at 5.6. My optimum target is 6; my Endocrinologist keeps telling me that is a tough target if I want to avoid the hypos that were formerly blighting my daily living and I should settle for 7. When my alarm goes off at 5.6 I look at the trend arrow: if it is sloping down I'll eat about 5-7 gms of slower acting carbs, such as a small biscuit. If vertically down I'll possibly eat a single jelly baby or a dried apricot or prune - which are faster acting carbs. For a horizontal arrow I don't eat; BUT for all 3 of those scenarios I monitor much more closely with flash scanning. If my BG rises, fine; the alarm will tell me the next time I reach 5.6. If it continues to fall then I eat another small snack. Previously I experienced hypos daily and more, some of them pretty deep with BG in mid 2s. This last 10 months I've had no deep hypos and less than one per month of a mild nature. My LibreView reports show several low glucose events, but these are from sensors not reading at all accurately and providing misleading statistics. At the start of this year I was watching and alarm listening like a hawk, but today I'm a fair bit more relaxed, I trust the alarm to warn me and then I'm fairly diligent about monitoring. While sleeping I have my Libre Reader perched on top of an empty small plastic box which provides great volume amplification; it wakes me, but not my wife!

I'm not saying you must use 5.6, it's your personal choice and that choice should be what works for you. But I do think 4.3 is low for comfort at this stage, particularly if your hypo awareness is suspect. A further advantage of using 5.6 for me is that if I find I'm wobbling around that level, but generally stable, I can and do reset it at something like 5 or 4.8, knowing that a rapid drop is unlikely. It gives me a 2nd "tripwire", so to speak.

I promised to send you info about the limitations of Libre and failed. Sincere apologies. Here is a link from a post earlier this year, most of which I stole from @helli,a lady with many more years of D management wisdom than myself.

https://forum.diabetes.org.uk/boards/threads/hi.99293/#post-1159652

 

[StephanieMLW]

Hello Stephanie,

I have my low alarm set at the upper limit of 5.6. That gives me the maximum time to respond and manage my BG well before I get even near hypo. Also, your sensor is reading your interstitial blood glucose (BG) which lags your actual BG by anything from 2.5 minutes to 15. So if you should be falling rapidly an alarm at 4.3 may only be confirming what your body should already be telling you - but you said your awareness is not good. Further reason for a higher alarm threshold.

The great thing about Libre is being able to get ahead of what is happening with your BG and that comes from looking at the trend arrows just as much as the actual number displayed. Indeed, neither Libre or any blood testing meter are really accurate (and for that to be so the manufacturing costs would be prohibitive). So scrutiny or comparison of a Libre reading against a finger prick reading (only doable when the trend arrow is horizontal and indicating not much change is happenening at that moment) could mislead you anyway. There is a view that either of such numbers (Libre and test meter) should be rounded up or down to the nearest whole number anyway, since that reflects the maximum accuracy that can come from the permitted tolerance of such devices. So 4.3 may sound very accurate, but it really isn't.

Coming back to an alarm at 5.6. My optimum target is 6; my Endocrinologist keeps telling me that is a tough target if I want to avoid the hypos that were formerly blighting my daily living and I should settle for 7. When my alarm goes off at 5.6 I look at the trend arrow: if it is sloping down I'll eat about 5-7 gms of slower acting carbs, such as a small biscuit. If vertically down I'll possibly eat a single jelly baby or a dried apricot or prune - which are faster acting carbs. For a horizontal arrow I don't eat; BUT for all 3 of those scenarios I monitor much more closely with flash scanning. If my BG rises, fine; the alarm will tell me the next time I reach 5.6. If it continues to fall then I eat another small snack. Previously I experienced hypos daily and more, some of them pretty deep with BG in mid 2s. This last 10 months I've had no deep hypos and less than one per month of a mild nature. My LibreView reports show several low glucose events, but these are from sensors not reading at all accurately and providing misleading statistics. At the start of this year I was watching and alarm listening like a hawk, but today I'm a fair bit more relaxed, I trust the alarm to warn me and then I'm fairly diligent about monitoring. While sleeping I have my Libre Reader perched on top of an empty small plastic box which provides great volume amplification; it wakes me, but not my wife!

I'm not saying you must use 5.6, it's your personal choice and that choice should be what works for you. But I do think 4.3 is low for comfort at this stage, particularly if your hypo awareness is suspect. A further advantage of using 5.6 for me is that if I find I'm wobbling around that level, but generally stable, I can and do reset it at something like 5 or 4.8, knowing that a rapid drop is unlikely. It gives me a 2nd "tripwire", so to speak.

I promised to send you info about the limitations of Libre and failed. Sincere apologies. Here is a link from a post earlier this year, most of which I stole from @helli,a lady with many more years of D management wisdom than myself.

https://forum.diabetes.org.uk/boards/threads/hi.99293/#post-1159652

Thank you @Proud to be erratic - I had been thinking about setting my alarm a little higher actually as when things drop they seem to be dropping very fast. Your advice here does seem to confirm that could be a good shout!

Interesting how you approach things with the arrows - I’m starting to build a technique here too, so far I’ve found that if my reading is around 5 and trending down (diagonally not vertically), if I have a small hot chocolate, a little box of raisins or two fruit pastilles it sets things back on track without going into that dreaded under 4 territory. I’m sure that with practice and over time I’ll be able to work out more of these strategies so they become second nature

An interesting one last night - my low alarm went off at 2am, but the arrow showed I was stable at 4.2. I kept an eye on it and the reading went up to 4.5, but to prevent being woken again if it fell I had my normal quota of hypo correcting sweets. From my chart it looks like that pushed things up to around 6, where it then started to decline again slowly overnight to a 5 upon waking. I do however have the ‘hangover’ feeling today, so I’m looking forward to catching up with the nurse this week, as it seems that even if I don’t hit an actual hypo, the low dips at night are making me feel a bit rotten.

So much to learn but thank you again for your advice - it does feel like some form of normality is now within reach

 

[Proud to be erratic]

Thank you @Proud to be erratic

You are welcome. A few nuances in your reply that I'll try and offer suggestions or comments. I'm T3c, with no pancreas, so have no experience of the early days of T1, but my treament is as if T1, ie insulin dependence.

- I had been thinking about setting my alarm a little higher actually as when things drop they seem to be dropping very fast. Your advice here does seem to confirm that could be a good shout!

Interesting how you approach things with the arrows

For me, because my body and Libre aren't good friends, I use the arrows more than the actual number. This morning as I woke up Libre and Actual were very close, 20 minutes later they were almost 3 pts apart; some of that could be lag from Foot on the Floor symptoms (a surge of glucose from the liver on waking) and some just because .....; but it's pretty normal for me to get very little matching of interstitial with actual.

- I’m starting to build a technique here too, so far I’ve found that if my reading is around 5 and trending down (diagonally not vertically), if I have a small hot chocolate, a little box of raisins or two fruit pastilles it sets things back on track without going into that dreaded under 4 territory. I’m sure that with practice and over time I’ll be able to work out more of these strategies so they become second nature

I'm sure you will. It does take time and experimenting to find these things out and no one day is necessarily the same as another.
Do you have half-unit pens, which are reusable pens with disposable cartridges? Less wasteful for the environment and need gamblers fridge space. If not I suggest these would be helpful to you, because some of you bolus doses could be very small and half-units help. Also the pens have a memory cap, that tells you what your last dose was and roughly when; most useful when you have that "did I or didn't I" take my basal or bolus ..... Its easy to get distracted by "things that interrupt" while planning or taking an injection.

I like the little boxes of raisins, they are a good alternative to a dried apricot or prune and less sticky! Fruit pastilles are taking over from jelly babies, for me, as my go to mild hypo response; certainly in the car, where they don't melt in hot weather. I always have a mini pack of haribos in every jacket pocket and/or my trousers pockets. I bulk buy just before Halloween when they are ridiculously cheap for the trick or treats; last year Asda sold them in bags of 42 mini packs, which worked out at 10.2p per 100 gm. JBs are typically 50p per 100gm.

An interesting one last night - my low alarm went off at 2am, but the arrow showed I was stable at 4.2. I kept an eye on it and the reading went up to 4.5, but to prevent being woken again if it fell I had my normal quota of hypo correcting sweets. From my chart it looks like that pushed things up to around 6, where it then started to decline again slowly overnight to a 5 upon waking.

If that gradual drop becomes a regular occurrence, it would suggest to me that my basal is a bit too much. Ask your DSN about this. Its very early days for you, so tempting as it s to interpret every movement on your libre graph it is better not to. There are so many other things that can affect one's BG and while sleeping your brain is working at its hardest in any 24 hours, doing all the housekeeping on one's body and the brain only uses glucose, no fats or proteins; so if glucose is in short supply your brain will get protein, fat into carbs - or even get muscles to release glucose. All of that happening while you sleep, plus any dreams triggering forms of stress and response to stress triggers glucose release ... So not just your snack might be influencing BG activity; it's a complex disease!

I do however have the ‘hangover’ feeling today, so I’m looking forward to catching up with the nurse this week, as it seems that even if I don’t hit an actual hypo, the low dips at night are making me feel a bit rotten.

It could be, as your body adjusts to a more even pattern and more in range, that it should adjust to give you better hypo awareness and less symptoms of feeling rotten. Sometimes one's body overreacts and indicates you are hypo, with those horrible feelings, even when your actual BG is fine; if that applies to you, it should settle down. So finger pricking when feeling low, or Libre indicating low is essential to get a true snapshot. If Libre says low that can induce a feeling that you are low and when the fp says not, those feelings magically go!

So much to learn but thank you again for your advice - it does feel like some form of normality is now within reach

Yes normality is in reach. It takes time, you've started on a marathon and sprinting is not recommended for any marathon runner. Good luck with everything.