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night time lows and annoying libre!

C

Caroline1967

Well-Known Member
Relationship to Diabetes
Type 2
HI
I use tresiba in the morning and trurapi throughout the day as needed. I really struggled to get the right amount of Tresiba but eventually got to 70 units and everything has been working fine since September. My blood glucose would sit nicely at about 9 or 10 through out the day and would rise quite a lot over night and I would start the day at about 13. I thought it was a bit high but my nurse was quite happy about it.
Two weeks ago I joined slimming world and have lost nearly a stone (I have a lot to lose!) and I have changed my eating habits quite a lot. My blood glucose now sits at about 5 or 6 and doesn't rise over night. IN fact it does quite the opposite and drops to 4 or just below. I am not having hypos over night but I am being woken up by the libre alarm as it registers that I am 3.9 or below. I set it for 3.6 last night and it still woke me up at 3am. I test with a glucometer and I measure 4.2 or there abouts. I did wonder about just turning the alarm off at night but worry about what might happen if I did have a hypo.
I have started to reduce the Tresiba as I presume that would help too. I am down to 66 units at the minute. I know I had to increase it every 5 days while getting to the right amount so I am presuming I need to reduce it slowly too.
I can't get an appointment with my nurse at the minute to ask.
Would just turning off the alarm be ok?
Thanks
 
I’m not sure I would want to turn off my alarms in your situation @Caroline1967

I am fiercely protective of my hypo warning signs so I set my alerts at 4.8 during the day, and 4.4 at night, and I would treat with 5-10g of carbs when those alerts sound.

The difference between 3.9 and 4.1 are fairly arbitrary to my mind - certainly within the range of allowed variation for each technology, and right on the edge of the “steady on there” zone in my mind.

Hopefully notching down your Tresiba will help you sit more in the 5-6 range overnight?
 
I have just changed insulin from novo rapid to Fiasp as I found novo rapid worked too slow and caused to go high and crash later in the day.
 
I wouldn’t turn the alarm off if you’re prone to hypos during the night @Caroline1967 How much are you reducing your Tresiba by each time? If you’re going low overnight, I’d be making a reasonable reduction for safety reasons not taking off a unit and waiting, if you get what I mean. You can always add a unit or two back if you find you’re a little high.
 
It sounds like you’re dropping the tresiba very slowly if you started at 70 and are only down to 66. You could drop it a bit faster eg by 2-3u at a time maybe if you’re still finding the dose too high? That would still be a small percentage of the total dose.
 
Thank you for your advice. I kept the alarm on and got woken at 5.30 so managed to get some sleep!! I am going to reduce the Tresiba a bit quicker and see what happens.
 
I'm making an assumption that you have Libres default alarms?
Personally I had to change them to something more gentle (but still alerting) as I found it really harsh and really couldn't have that going off in the middle of the night. My sleep is still disrupted obviously if it goes off but don't have a sound that would wake up half the neighbourhood.
 
everydayupsanddowns said:
I’m not sure I would want to turn off my alarms in your situation @Caroline1967

I am fiercely protective of my hypo warning signs so I set my alerts at 4.8 during the day, and 4.4 at night, and I would treat with 5-10g of carbs when those alerts sound.

The difference between 3.9 and 4.1 are fairly arbitrary to my mind - certainly within the range of allowed variation for each technology, and right on the edge of the “steady on there” zone in my mind.

Hopefully notching down your Tresiba will help you sit more in the 5-6 range overnight?
Click to expand...
I had my alarm at 4.6 in the day, but hospital doctor not happy wants me at 4.2
 
Woodywoodpecker said:
I had my alarm at 4.6 in the day, but hospital doctor not happy wants me at 4.2
Click to expand...
I am quite surprised/shocked at that, not so much because I think 4.2 is particularly too low as I used to have mine set at 4.2 but just that a consultant would unhappy with 4.6 and want you to lower it. I guess it depends on their reasons. How do you respond to the low alarm. Do you have a graded response rather than a full hypo treatment every time? If you are very anxious about hypos and that is affecting your mental health then maybe lowering your alarm a little will help you to become more confident of treating hypos and have less anxiety whilst still remaining relatively safe.
So I guess it depends on the individual's circumstances. I started on 4.2, went up to 4.8 but found it was less beneficial (a bit "boy crying wolf") and came back down to 4.5, which seems to work reasonably well. Thinking about it now, I might actually go back down to factory setting of 3.9 for a while and see what difference that makes to my stats. I think there may be as much risk in losing hypo awareness from having the alarm set too high as too low, simply because you rarely or never get to experience your hypo awareness signs and get out of the habit of checking for them, or with some people newly diagnosed who have only ever used CGM, don't actually learn what their early warning signs are. I appreciate this may be quite a controversial comment but we do have a few newbies on the forum who have said that they don't have hypo awareness and I suspect that is it because they have never really experienced a hypo or enough hypos to learn what their early warning signs are. I am not talking the obvious sweating and shaking stuff, but the subtle little things warning signs that can so easily be ignored if you haven't had a hypo after them and learn that they are the tip off.
Some of mine are a feeling of isolation which is like I am in a vacuum or wrapped in cotton wool. Feeling slightly too warm and sometimes my stomach does a little flip which is sort of similar but more mild than going down in a lift and my peripheral vision starts to go ever so slightly blurry which you don't particularly notice unless you actually check it, because most of the time we focus on what we are looking at. I would not be aware of any of these things if I hadn't experienced several hypos. I usually get these between 3.8 and 4.2. but not above 4.5 unless my levels are dropping really fast, so maybe lowering your low alarm can help you develop these and perhaps give you confidence in your body to warn you of hypos and your ability to treat them.
 
Woodywoodpecker said:
I had my alarm at 4.6 in the day, but hospital doctor not happy wants me at 4.2
Click to expand...
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.
 
May be the best solution is to get a better CGM?

Half of the FSL’s readings below 5,55 mmol/l have more than the allowed deviation (compared to Dexcom 1 in 9 and Medtronics 1 in 13) so using an FSL is asking for false alarms.

Not only low, but high as well, which woke me up last night, because I have a high sensor this time
(which typically starts at 11 mmol/l or higher while low sensors typically start at 5 or lower in people like me with low BMI, low insulin resistance and high macrophages, ~10% of diabetics).

For me the alarms are useless and I am forced to turn them off.
 
Bruce Stephens said:
Did they offer any reasoning? If not, I think that's unacceptable. It's your condition (that you're managing over 99% of the time) and it's vital that you understand suggestions like that.
Click to expand...
No she just said that I needed to put it down, that I wud be fine at 4. Don’t fancy being at 4 when working, have a heavy manual job
 
Woodywoodpecker said:
No she just said that I needed to put it down, that I wud be fine at 4. Don’t fancy being at 4 when working, have a heavy manual job
Click to expand...
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.)
 
rebrascora said:
I am quite surprised/shocked at that, not so much because I think 4.2 is particularly too low as I used to have mine set at 4.2 but just that a consultant would unhappy with 4.6 and want you to lower it. I guess it depends on their reasons. How do you respond to the low alarm. Do you have a graded response rather than a full hypo treatment every time? If you are very anxious about hypos and that is affecting your mental health then maybe lowering your alarm a little will help you to become more confident of treating hypos and have less anxiety whilst still remaining relatively safe.
So I guess it depends on the individual's circumstances. I started on 4.2, went up to 4.8 but found it was less beneficial (a bit "boy crying wolf") and came back down to 4.5, which seems to work reasonably well. Thinking about it now, I might actually go back down to factory setting of 3.9 for a while and see what difference that makes to my stats. I think there may be as much risk in losing hypo awareness from having the alarm set too high as too low, simply because you rarely or never get to experience your hypo awareness signs and get out of the habit of checking for them, or with some people newly diagnosed who have only ever used CGM, don't actually learn what their early warning signs are. I appreciate this may be quite a controversial comment but we do have a few newbies on the forum who have said that they don't have hypo awareness and I suspect that is it because they have never really experienced a hypo or enough hypos to learn what their early warning signs are. I am not talking the obvious sweating and shaking stuff, but the subtle little things warning signs that can so easily be ignored if you haven't had a hypo after them and learn that they are the tip off.
Some of mine are a feeling of isolation which is like I am in a vacuum or wrapped in cotton wool. Feeling slightly too warm and sometimes my stomach does a little flip which is sort of similar but more mild than going down in a lift and my peripheral vision starts to go ever so slightly blurry which you don't particularly notice unless you actually check it, because most of the time we focus on what we are looking at. I would not be aware of any of these things if I hadn't experienced several hypos. I usually get these between 3.8 and 4.2. but not above 4.5 unless my levels are dropping really fast, so maybe lowering your low alarm can help you develop these and perhaps give you confidence in your body to warn you of hypos and your ability to treat themi
Click to expand...
 
Woodywoodpecker said:
That’s what I thought, thought about putting it up and then down when had hospital appointments
Click to expand...
I wouldn't do that. It's a condition that you're living with so don't be ashamed of doing things you find helpful. Rather, defend your choices, and make them explain their suggestions (which may turn out to make sense, or may not work for you).
 
rebrascora said:
I am quite surprised/shocked at that, not so much because I think 4.2 is particularly too low as I used to have mine set at 4.2 but just that a consultant would unhappy with 4.6 and want you to lower it. I guess it depends on their reasons. How do you respond to the low alarm. Do you have a graded response rather than a full hypo treatment every time? If you are very anxious about hypos and that is affecting your mental health then maybe lowering your alarm a little will help you to become more confident of treating hypos and have less anxiety whilst still remaining relatively safe.
So I guess it depends on the individual's circumstances. I started on 4.2, went up to 4.8 but found it was less beneficial (a bit "boy crying wolf") and came back down to 4.5, which seems to work reasonably well. Thinking about it now, I might actually go back down to factory setting of 3.9 for a while and see what difference that makes to my stats. I think there may be as much risk in losing hypo awareness from having the alarm set too high as too low, simply because you rarely or never get to experience your hypo awareness signs and get out of the habit of checking for them, or with some people newly diagnosed who have only ever used CGM, don't actually learn what their early warning signs are. I appreciate this may be quite a controversial comment but we do have a few newbies on the forum who have said that they don't have hypo awareness and I suspect that is it because they have never really experienced a hypo or enough hypos to learn what their early warning signs are. I am not talking the obvious sweating and shaking stuff, but the subtle little things warning signs that can so easily be ignored if you haven't had a hypo after them and learn that they are the tip off.
Some of mine are a feeling of isolation which is like I am in a vacuum or wrapped in cotton wool. Feeling slightly too warm and sometimes my stomach does a little flip which is sort of similar but more mild than going down in a lift and my peripheral vision starts to go ever so slightly blurry which you don't particularly notice unless you actually check it, because most of the time we focus on what we are looking at. I would not be aware of any of these things if I hadn't experienced several hypos. I usually get these between 3.8 and 4.2. but not above 4.5 unless my levels are dropping really fast, so maybe lowering your low alarm can help you develop these and perhaps give you confidence in your body to warn you of hypos and your ability to treat them.
Click to expand...
I used to be terrified off the lows in the beginning, I know it’s stupid but thought I wud die, I know that’s not the case now. I just don’t like them when at work and out and about, through the night has never bothered me, just take something then drop off again. My awareness is strange when go low my bum stings, when go high it burns, also when go under 5 can get light headed
 
Bruce Stephens said:
I wouldn't do that. It's a condition that you're living with so don't be ashamed of doing things you find helpful. Rather, defend your choices, and make them explain their suggestions (which may turn out to make sense, or may not work for you).
Click to expand...
She never gave any explanation, just said it should be at 4.2
 
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