Libre App question.

[VioletMatilda]

My sister is Type 1. She lives alone and I have the Libre App on my phone.

She's recently had a chest infection, and whenever she's unwell her diabetes becomes harder to control and the alarms on my phone more frequent.

The current issue, however, is that I've woken several times to see that I am getting no data; it's stopped during the night.

I've phoned her twice at 8am to say that I've had no data since 3am and is she ok/ She's been annoyed both times. She says I don't need to bother with the data, so long as I respond to the alarms. She says the alarm function will still work even when the data function isn't working.

Is this correct. Will the alarm function still work, when there is no data?

No it won’t

Most T1s that live alone don’t need someone else receiving alarms though. Is there a reason you need the alarms? Can she not just manage her diabetes herself? I know a lot of T1s and none of us that live alone have someone else receiving alarms!

Is it that the Bluetooth from the sensor to her phone is working, so she still gets the alarms, but the data connection is not uploading at that time so there's no data signal?

If she wants you to remotely monitor her, she should look into this so you're getting the data. I agree with the previous poster though, it's unusual for an adult to be monitored in this way. You sound like a lovely sister who really cares.

PotatoFan, almost two years ago a friend phoned her, realised she was slurring her words and not making sense and dialled 999. The paramedics who turned up recommended she get someone else added to her Libre, to avoid it happening again. Two of us get the alarms, plus a third family member has the App switched off, but switches it on if the first two are e.g. on a plane.

The hypo two years ago gave her a bad fright. It gave the whole family a fright! If her friend hadn't happened to phone, she might have died.

My alarm goes off at 3.3. How often is it normal to be at 3.3? I've had 9 alarms in the last 14 days. Twice she was down at 2.9 before it started to go back up. The week before, when she had the chest infection, the alarm was going off more frequently than that. She also hit the top of the graph - 24.7 - once.

Her diabetes is always less controllable when she has another illness, such as the chest infection. The last three weeks aren't typical, but they're not unusual either.

Have you checked with her that they're actual hypos? You can get something called a 'compression hypo' with a sensor, which is basically a fake hypo reading where the tissue beneath the sensor has been compressed from e.g. lying on it.

There definitely tends to be more glucose variability after illness, and perhaps requiring more insulin than usual, but 9 low hypos over 14 days seems a lot.

Are her sensors funded, and does she have a pump? If she is having dangerous, frequent, hypos and lives alone, she sounds like she would be a good candidate for one of the closed loop systems, can she advocate for this?

The only person responsible for managing her diabetes is her though. There are ways to prevent anything like that happening again without needing another person following you. I’m absolutely confident in my ability to keep myself alive, living alone, with no one following my libre.

MujeresLibres, 3.3 isn't a "low hypo" though, is it? My sister is unconcerned about going into the red down to 3.3. Her alarm goes off at 3.4, and so my alarm only goes off at 3.3 if she hasn't caught it at 3.4.

As far as I know the 3.3 alarm is so that I'm keeping an eye in case her blood continues to drop. I don't think my sister would describe it as a hypo until it's 3.2 or below.

My worry, the reason for posting, is situations in which I'm getting a "no data" message. My sister said that she thought I'd still get an alarm even if I wasn't getting data, but that made no sense to me. PotatoesFan has confirmed that I wouldn't get it.

During the fortnight which started with her becoming ill, I had 7 alarms with a low of 3.3 and a further 7 alarms at 3.2 or below - an average of one alarm every day. So I thought there was a real risk of missing one if I was getting no data for several hours.

It seems to be a vicious circle - the T1 means that it takes her longer to recover if she's ill, and any illness makes it harder to control the diabetes.

It's interesting to hear that it's not usual to have another adult following the Libre app. When she said that the paramedics had recommended it, I assumed it must be standard practice.

Yes 3.3 and 3.4 are much too low. I wouldn’t be happy with having any 3.3 or 3.4s at all. If I saw more than say one a month I’d be making changes to my diabetes management to stop it straight away.

My alarm goes off at 4.5 - 5 (depending on situation) so that I fix it before I ever go under 4.0. I don’t spend any time really under 3.8 ish whatsoever, to make sure that I’m safe and independent.

sounds like she isn’t managing her diabetes as well as she should be to be honest and I’d aim to eventually get rid of anyone else following the alarms but encourage her to seek support with preventing hypos if she doesn’t understand how to do that herself.

suggest she joins the diabetes.org.uk forum (not the commercial red .co.uk one), and makes an appointment with her diabetes nurse. She should set her low alarm to a minimum of 4.5 and if the arrow is trending down at that level, treat the hypo before it happens.

PotatoFan, this is very interesting. She's been T1 for years and I think she's become quite blase about it. She does have a diabetic nurse and check-ups at the diabetic clinic. She's always got sweets / chocolate to hand so that she can pull up out of a low quickly.

She gets an alarm at 3.4, has a sweetie and texts me a thumbs up emoji. If my alarm goes off at 3.3 I check my phone and if she's sent a thumbs up I know she's ok. If she hasn't I text her and if she hasn't responded in 5 or 10 mins and her blood has fallen further, or still has the down arrow, I phone her to make sure she's ok.

Out of the 14 alarms in the first two weeks of her chest infection, she had sent the thumbs up emoji probably 8 to 10 times? And responded to a text 2 to 4 times. I had to phone twice.

My impression was that this was the alarm system working well. The only issue, I thought, was the "no data" gaps.

I'd be interested in your thoughts.

Violet, @PotatoFan has already said, but 3.3-3.4 is too low, and you said she'd had a 2.9 as well. Her diabetes team will be interested in any hypos below 3.5, and will certainly be wondering why she's having so many.

I would agree with Potato's suggestion of setting the alarms much higher. I also made some suggestions about establishing whether these were true hypos or compression hypos (sounds like true hypos, from what you've said), to try to see if there is some kind of upload issue with regard to losing signal, and to consider asking for a closed-loop system (I really think she'd be a good candidate). Hope she can sort things out.

that is absolutely not the alarm system working well and if I had a diabetic sibling or friend that treated me that way I’d be absolutely fuming.

id be okay with having an alarm at 3.3 if the person really wasn’t confident and needed the reassurance but only if they were doing their side and treating hypos before they happen so my alarm was never going off

this situation is absolutely not the alarms working as intended. The intention is for the diabetic to set their alarms at a level that means they can treat it before they go below 4.0

i don’t know how you sort this out but even if you need to say well I’m not having the alarms any more, something needs to happen to make her actually take care of her own diabetes. If it helps motivate her, she’s probably not legally able to drive due to hypo unawareness - you have to be able to feel your bg dropping below 4 without an alarm to legally drive

I don’t think she sounds a good candidate for hybrid closed loop at the moment. You have to be very motivated and capable of understanding your diabetes well to get the most of that kind of system. Got my training for it tomorrow!

This is all an eye-opener from a question about "no data" !!!

MujeresLibres, I don't know the answer to the question about compression hypos, and suspect my sister would be as dismissive of me asking as she was about my concerns about "no data."

She has been T1 for many years and is confident that she is her own expert.

Keeping an eye on the Libre App has been part of my daily life, and another relatives daily life, for almost two years now. I don't know how long the longest gap between alarms has been in that time, but I don't think I've had a week without an alarm.

It becomes difficult when she's ill and there's the concomitant issue of her diabetes becoming harder to manage. The underlying T1 slows down her recovery whenever she's ill - she's still not fully recovered from the chest infection a month on. Earlier this year she had problems with a tooth - she got antibiotics, but it flared up again, more antibiotics, another flare up and she had the tooth out - I think that was two months in total of T1 instability and alarms.

The current spate of near daily 3.4 and belows isn't typical - it's because she's unwell - but it isn't unusual either. About 8 weeks with the tooth problem, heading into week 5 of the chest infection, a UTI in spring - maybe 16 weeks in total so far in 2025?

May I ask another question? At the start of the chest infection, when she was in bed ill, I did a supermarket shop for her. Her shopping list included a family size bag of chocolate buttons, a family size bag of caramel buttons, a packet of chocolate digestives, lucozade, and individual sized trifles. The stuff she needs to deal with low blood sugar. It seemed a lot to me. Apart from the biscuits, I wouldn't have anything like that in my supermarket shop, but as my sister says, I don't need it, because I don't have to deal with low blood sugar.

Does that seem like a normal T1's shopping list?

And - thank you again, MujeresLibes and PotatoFan. I am learning a lot!

If she knows she’s ill and she knows what happens when she’s ill then at the first sign of illness she should be changing her insulin doses to avoid the hypos. Then again if she knows eg stress makes her high and she goes through a stressful period she should be adjusting insulin to prevent the highs not just waiting for alarms to go off.

None of these items are appropriate for fast acting carbs to treat a hypo other than lucozade: family size bag of chocolate buttons, a family size bag of caramel buttons, a packet of chocolate digestives, lucozade, and individual sized trifles

The rule for hypos is fingerprick to check bg (never just rely on libre), have 15g fast acting carbs (examples include half a bottle of lucozade, 4 jelly babies, 4 glucose tablets, haribo, small carton apple or orange juice). Do not have biscuits trifle chocolate or food type items when low as they will absorb too slowly and will slow down absorption of fast acting carbs. The fast acting carbs must be well chewed as they absorb fastest through your cheeks.

After 15 minutes fingerprick to recheck. Never rely on libre readings after a hypo, libre takes longer to catch up so can show you’re still low when you’re not. if it’s under 4.0 repeat the above until it’s 4.0

You can then (when it’s 4.0 or above) at this point have 15g slow acting carbs. If using chocolate digestives for example this would be one chocolate digestive (10.4g carb), two if you’ve got a lot of insulin still working. If using chocolate buttons it would be 25g, which is a small amount of the bag - a quarter of a 100g bag so you wouldn’t need multiple bags per week. It doesn’t have to be chocolate or biscuits though you could use a banana or a piece of toast for example.

The above is for readings under 4. If you’re managing diabetes well then you’d treat above 4, say in the low 4s, with a small amount of either fast or slow carbs based on the direction of the arrow, no more than 15g.

If there is no data the alarms don’t go off because it’s the data that triggers the alarm

every now and then DH gets one that doesn’t work unless he waves the phone over it and it’s a real pain

the other annoying thing is that when sugar levels change fast - dangerously fast - then it decides it must need to reclibrate

DH has about a bag of jelly babies and a packet of small Mars / Lidl alternative bars every week and eats sugar by the teaspoon

his alarm goes off at 4.5 so that he can act before it gets too low

I've asked my sister why she doesn't set her alarm for 4, to avoid going into the red, and she said that if was set at 4 it would constantly be going off. She's happier with the alarm at 3.4, because raising her blood sugar is easy to manage.

She's a lot more worried about hypers than hypos. She has "pins and needles" diabetic neuropathy in one foot and worries about it worsening into "no feeling" neuropathy. She says that running her blood higher risks worsening the neuropathy, whereas dropping to 3.4 doesn't carry the same risk, especially with the safety net of two family members getting the alarms.

Today she has been down to 3.3 twice, two hours apart, and has also peaked at 17.6. 17.6 is unusual - the last time she went above 17 was seven days ago, and the time before that was six days earlier.

She's also reiterated that she manages her diabetes well.

Dropping low makes highs more likely - as your body can release sugar and tends to go ott

treating at 4 or 4.5 should be fine and avoid the bad lows because the bad lows do risk death - which she hasn’t yet experienced clearly but is a risk

What is her long term average ?

I don't know how a long term average is calculated.

Looking at the logbook on the app in my phone, which goes back for 14 days, she had six days with no reds, and eight with reds, although on two of those days she barely went into the red - one was a 3.7 and one a 3.6. She was down to 2.9 twice.

She only went into the orange (above 15) on five of those days.

You don’t get the estimated a1c or time in range in the follow (libre link up) app only in the main users app

Orange at 10, red at just over 13 is the more normal settings ?

you could ask what her long term average is ?

What’s the purpose of asking what it is? All the lows will be dragging it down anyway

Because it seems she is tolerating quite high highs and low lows in order to avoid frequent alarms which isn’t ideal and I begin to think she might benefit from a little more support / training ?

I think it was the Daphne course which had the benefit that at least one day you could take someone along - it was a great chance for me to ask questions and learn better

although the OP would do well to remember also what a huge mental laod/ stress / utterly unrelenting this all is - which may be why sister doesn’t always respond like she is being cared for when op expresses concern. The mental side of things is huge.

She did ask me to do the Daphne course several years ago (2016 or 2017?) but I couldn't see the point. We live 80 miles apart and it seemed as though the Daphne course was geared towards people who actually lived with, or close to, the diabetic. I'd have had to use up two days holiday. I can't remember if she had the Libre then, but I don't think so. Linking to my phone definitely wasn't an option then.

I know it's unrelenting.