When to dial 999 (Libre App)

[VioletMatilda]

Dsis is Type 1. She lives alone. We live 3 hours apart and I have the Libre app on my phone. If the alarm goes off, I call her - usually a video call to check she's ok.

On 3 occasions this year she hasn't responded to repeated calls and her blood has continued to fall. I have dialled 999 when her blood dropped to 2.8 or 2.7 and a paramedic in a car has been there quickly.

Today her alarm went off mid morning and when I called she was asleep in bed, not feeling well. She took jelly babies and I saw her blood go back up. Two hours later it went off again. I called again and again she was asleep in bed. This time she seemed to think my call was a continuation of the previous one, and she was saying "I told you, I've taken jelly babies." I ended up shouting at her to drink Lucozade, so she got up, but then got distracted by her cat. More shouting and she eventually drank Lucozade, but her blood dropped to a low of 2.3. I stayed on the call till her blood was back up to 4.

Should I have dialled 999? She was breathing, conscious, and speaking to me, holding her phone so that I could see her, but she was confused.

I know that 2.3 and losing consciousness is an emergency, and in this case she wasn't losing consciousness, but is the threshold higher when the person lives alone?

Hypos should never be treated solely based on the libre readings, you should always fingerprick before treating as libre can say you’re low when you’re lying on the sensor, or it can underpredict where your reading will go (because it’s estimating your blood sugar to make up for the lag in interstitial fluid) and the lag can mean libre shows you’re still low when you’ve already fixed it and blood sugar has risen

why is she having so many hypos? Are they real ones verified with fingerpricks? What is she doing to change her medication to prevent them if they’re real? Why hasn’t she set her alarm to a higher number and been fingerpricking and treating before she’s low? I know about it when I’m at 5 and use the direction arrow and knowledge of what insulin I have on board to avoid the hypo in the first place that’s the whole point of having the libre. Can’t remember the last hypo I had

I live alone, have T1, and have never had anyone follow my blood sugars, never had to call an ambulance or had one called for me, and most T1s I know haven’t either. Sounds like your sister might need to take more control?

I also have T1 and live alone and your DS does need to either adjust her insulin doses or have a bed time snack to prevent hypos.

I had the same issue myself tonight, hence why I am on this forum at wrong o'clock!

I can not give advice on insulin doses but I will tell you what I will be doing to prevent another nocturnal hypo for myself, as a hint.

My next injection of background insulin will be reduced by 1 unit tomorrow evening but I will monitor my blood glucose over the next 36 hours, after this dose change before I make any more changes and the reason for this is it takes about 3 days for the dose change to take effect.

I know it is background insulin that I have to change and not quick acting because the duration of my quick acting insulin from tea time is 4 hours and that as now passed.

This advice was given to me on a DAFNE course, by trained DSNs.

What your DS does is her choice, she may prefer a bedtime snack.

Its a tremendous responsibility on you to be monitoring your DS blood glucose, I understand your concern is for your DS wellbeing and she is very lucky you support her.

My DH has T1 and now that he has his pod plus libre plus finger prick he rarely needs help with a low. Previously with just finger prick he often needed me to fetch snacks. This is even though I hear the alarm (I ask if I can help and it's no, so I roll over and go back to sleep).
(He always has a bedtime snack. Usually wholemeal toast and jam if you're interested!)

How many hypos is your sister having? She definitely needs to speak to her diabetes team about better management. Also, if she has had more than 2 hypos which have needed help from another person, she needs to let the DVLA know and she might lose her license.

Like a PP said, the Libre isn't always accurate. I had a 2.8 this morning when I was still asleep but a finger prick said it was 5.8 so it was just a compression low from lying on my arm.

Did your sister follow up her jelly babies and lucozade with some complex carbs? If I have sugar my glucose readings rise rapidly but also crash down quite quickly without some complex carbs on board.

Thank you for all the replies!

On all three occasions I've dialled 999 in 2026, it has been in the morning before she woke up (once at 4am, once at 7am, can't remember the other time, but about then). The paramedics found her asleep in bed each time (or just awake because of the sound of them coming into the house - she has a key safe so they can let themselves in).

Yesterday was similar, but because she wasn't feeling well she was asleep in bed mid-morning and at lunchtime. My calls woke her both times.

I don't think there's an issue with her driving, because if she's up and about, her blood sugar is under control.

@NoisyMonster678 Its a tremendous responsibility on you to be monitoring your DS blood glucose.

I sleep with my phone on my bedside table, but yesterday during the day I spent an hour gardening, with my phone inside. If she'd hypo'd then I wouldn't have heard the alarm. That gave me a real fright. She was asleep and wouldn't have woken without my call. I don't know why her own alarm hadn't woken her. I actually woke up at 3am this morning thinking her alarm had gone off, but it was just a nightmare!

@Gingerkittykat Like a PP said, the Libre isn't always accurate. I had a 2.8 this morning when I was still asleep but a finger prick said it was 5.8 so it was just a compression low from lying on my arm.

I can see a graph of the past 24 hours on my phone, and if I can see that her blood has been steadily dropping over several hours, I don't think that's a compression low?

Yesterday the graph showed the first hypo, a sharp uptick after the jelly babies but then a sharp down again to the second hypo. This seems consistent with her being asleep and not feeling well, being woken by my first call, taking a couple of jelly babies but going straight back to sleep without taking any carbs and then crashing again.

The underlying problem yesterday was that she wasn't feeling well. She was up at 16 at 7am and 8pm yesterday and 7am this morning, with the hypos at 10.20 am and 12.10 pm yesterday - if she's well she has a fairly smooth line but it all goes wrong if she's unwell.

I'm unclear whether I should have dialled 999 at 2.3, due to the fact that she was talking to me about the cat, but not regarding drinking lucozade as urgent.

I'm very grateful for all the advice!

I am in the same position as you OP. I have. no advice for you but send my sympathy. Type 1 diabetes is a bitch and ruins families lives.

I would say she should of done a finger prick, my sons on dexcom and I know it's not always accurate so I imagine libre is similar. That said my son wakes up confused sometimes too but it's because he's been jolted awake rather than the hypo making him confused. I don't think you were wrong to call 999, I would do the same in your shoes. 999 would rather check than deal with dead in bed syndrome.

Anyway get behind crushing t1d foundation, they are funding the quickest route to a cure and cutting out all the middle men costs.

There is a problem with her driving, if she’s needed help 2+ times then she has to stop driving and declare it to the DVLA

there are two questions on the form regarding help with lows

Q5. Have you had any severe episodes of low blood glucose, whilst awake, in the last 12 months?

Q6. Have you had 2 or more episodes of low blood glucose in the last 12 months where you needed help?

These sound like a yes, because you’re helping her and they’re not all whilst she’s asleep. You had the one where she was awake and talking about the cat and you had to help her

Then it also sounds like she fails this question too, because she wouldn’t have a 2.3 for example if she had good awareness, she’d have fixed it long before that point

Q4. Do you get warning signs of low blood glucose?

Thank you, @PotatoFan I didn't know that.

I think she would answer "No" to Q5, because all the severe episodes have happened because her alarm didn't wake her. I don't think there have been any when she has been awake.

But Q6 - her medical records will show that she's had paramedics responding to a 999 call three times in 2026, and there was one in late 2025, can't remember which month, but I think it was less than 12 months ago. And yesterday would have been a fifth, although I didn't dial 999. I suspect she wouldn't count yesterday, because I'm not sure how aware she was.

She'd answer "Yes" to Q4, as she's very aware providing she's awake.

Jumping back onto this old thread, to get a sense of how bad this is.

My alarm went off last night at 10.30pm. I phoned DSis and she'd already had a glass of chocolate milk, and was making herself toast. Her blood went down to 2.4 before it started to go back up. (She would have been fine if I hadn't called, because she was awake and already responding to her own alarm.)

It then went sharply upwards and hit 22.0 around 1am, before dropping again. My alarm went off at 4.30 am this morning, I called DS, and woke her up. She'd slept through her own alarm. She took jelly babies. Her blood was at 3.2 at it's low point before tracking up again.

It hit 22.0 at 2pm and has now been between 20 and 22 for two and a half hours. I think she's over 22 at the moment - my graph only goes up to 22, and when the graph shows a straight line along 22, she's often a bit over.

How bad is it, to have two hypos (2.4 and 3.2 and two hypers (both at least 22.0) in the space of 19 hours?

DS has been diabetic for many years, is confident that she's managing it, and will tell me that I can't possibly understand if I question her.

FWIW, the 4.30am alarm this morning was the second time this week I was woken by the alarm - she was at 2.7 at 3am on Sunday morning. I'd rather not have my sleep broken, but my main concern is that DS reckons this is par for the course for diabetics, but I gather from earlier answers on this thread that it's not normal.

As a T1 of 30+ years, I’d say that the early hours hypos would suggest that her background insulin needs looking at. Is she on injections or an insulin pump? I’m on injections and if I have hypos in the early hours I would be looking to reduce my nighttime long-term injection by a couple of units to see if that made the difference. The other thing I do if my reading is down in the 2s or low 3s is to add a fat or protein snack after the glucose/lucozade, so maybe toast and cheese or peanut butter, which prevents the secondary crash and slows down the spike after a hypo. (Your liver will dump sugar into your system after a hypo which is what increases the spike and gives you the yo-yo effect so tempering it with the fat/protein helps even that out a bit.).

I think your sister could benefit from talking to her diabetic team and seeing what they advise though, it sounds like she might need some adjustments somewhere.

Thank you. She does speak to her diabetic team.

I'm very worried about her and am mostly wondering how bad this sort of thing is? She's fairly dismissive of this, but it looks really bad to me.
She's has some mild diabetic neuropathy in her feet and spiking up to 22 risks making the neuropathy worse, doesn't it? Or do "spikes" not count?

Seeing the graph on days in which she is spiking up and down is stressing me and her wider family and I wonder if we should be worried?

I'm very aware of it, as I get the alarms on my phone. I've responded to six hypo alarms in the past week, of which two (3am on Sunday morning, and 4.30 am on Thursday morning) woke me up. If I'm going to be doing something which requires me to switch my phone off I message another family member who also has the app on their phone, but only switches it on when they are taking over from me.

Is this sort of day of spiking from low to high to low to high damaging her health? Or should I be more chilled about it. At the moment it seems as though her family is more worried than she is.

I second that she needs to talk to her diabetes team.

She shouldn't be having chocolate milk as a hypo treatment, it should be something like full sugar lucozade or coca cola to get it back up really quickly. The fat and protein in chocolate milk will slow down the absorbtion of the sugar.

When you treat a hypo inappropriately, you end up doing what is informally called 'diabetic werewolf': your body is desperate for glucose, so you crave food, end up eating too much and then have a rebound high blood glucose. And then you need a bit of insulin to bring it back down, and so the hypo/hyper cycle continues.

You can buy cocktail-size tins of Coke (either 150ml or 200ml) in boxes at the supermarket, and then you have something easy to hand that will give you just the right amount of sugar. I keep one by my bedside and another in my bag.

You aren't wrong to worry about her, she sounds like she's struggling. She's very lucky to have such a caring sister. I'm not sure of the effect of the ups and downs on neuropathy, but it will certainly bring down her quality of life and makes her quite unsafe.

As an aside, OP, some long-term diabetics can really burn out and have their mental health affected, it's a known comorbidity. It's a relentless condition, requiring constant risk assessments and decision-making, and sometimes you can go into a kind of denial because it can be so hard to manage. The good news is that the technology is improving all the time, and she might be a good candidate for one of the newer pumps like the Medtronic 780g, which links with the blood glucose sensor to give or stop insulin as required, and so reduce hypos and hypers.

Thank you @MujeresLibres , I think burn out is a possibility. She's been T1 diabetic for 40 years.

She will not accept any suggestion from me re management of her diabetes, and I suspect she's also not accepting advice from the diabetic team, because after 40 years she feels no-one can know more than she does.

I will ask her about newer pumps though.

"it will certainly bring down her quality of life" - I think it does. She has a lot of flexibility at work as a "reasonable adjustment" so if she wakes up feeling rough she can start at 10, or 11, instead of 9, but then she ends up working late, or taking work home to do in the evening, so she doesn't go to bed and get up at the same time every day. As a result she doesn't have breakfast at the same time every day, and I think that's adding to the problem.

What do you mean by "makes her quite unsafe"?

AIBU to be very anxious about her?

By unsafe, previous posters have brought up potential issues with the DVLA and driving. But I meant it more broadly, that you are having to watch her quite carefully and sometimes call paramedics, because you are worried about the hypos. I sympathise that you feel she might not listen to your concerns. I hope you can find an 'in' to get her to reconsider; if she was able to get a closed-loop system (pump and connected sensor) it may make her life considerably easier.

As another poster has said, long-term T1 is exhausting, relentless and sometimes, no matter how well-controlled you are generally, you have periods when everything goes tits up and you don’t really know why. Living on your own makes it harder too, so she’s very lucky to have family who are so closely involved, but sometimes that can feel a bit overwhelming, even if it’s mostly reassuring. You just want to live a “normal” life and not have yours diabetes there and ruling everything, but the reality is that it does, whether you like it or not.

I see that one of your worries is that she’s not having breakfast at the same time every day - that shouldn’t necessarily be a problem with the insulin we have now. When it used to be a mix of long and short-acting insulins given as one injection then there was a lot less flexibility over eating (I remember that from when my mum was diagnosed in the late 1960s) but now it’s not so rigid. Do you know if your sister has done a DAFNE course to fully understand and work out her carb ratios? It makes a huge difference and takes the guesswork out of calculating your insulin dose.

P.S. If she's had T1 for 40 years and the only complication she has is mild neuropathy, she's actually managed incredibly well! Life-events can throw a curveball though, e.g. menopause, meaning changes are needed.

@MujeresLibres she also has diabetic cardiomyopathy, and attends a clinic for that. But she worries about / talks about the diabetic neuropathy more.

@InADilemma26 thanks for reassuring me about breakfast. Yes, she's done a DAFNE course, but that was few years ago now.

I don’t have neuropathy myself, but I know that it’s very common with long-term T1 and is something to be taken seriously. I understand that it’s a result of poor circulation and I’ve been told by my diabetic consultant that keeping the calf muscles exercised is the best way to help - the calf muscles are the biggest aid to increasing circulation in the lower body apparently. I walk my dog a lot, which is one way, but anything that uses these muscles is good - flexing your feet by standing flat and then on tiptoe, or on the edge of a stair (if you can balance!), is another good way to use those muscles. If you Google you’ll find these sort of exercises, some of which can be done sitting down, and devices to help - cycling thingies or foot pads with electrical pulses to increase circulation. It’s a big market.

Good to hear she’s done the DAFNE course - I did mine years ago too but it does stick with you.

What is her sugar level when the alarm is triggered ? DH goes off at 4.5 which means he’s still very mentally aware and can therefore act more rationally

if it’s triggering once the brain is already losing power it can be harder to act rationally and eat enough

it is relentless though

What insulin regime is she on, when was it last reviewed

Thanks @brownbootsandhats I think her alarm goes off at 3.9. Mine goes off at 3.2.

I'm the safety net, so that if she's awake but doesn't hear her alarm (unusual) or sleeps through it (far more common) I phone her to tell her / wake her up. There are three of us with the app on our phones - if I have to switch my phone off, then I message the next person to switch theirs on, and if neither of us can have our phones on, then the third person goes "on duty."

Sometimes she gets the alarm, but her blood is falling so sharply that my alarm goes off before the jelly babies have kicked in.

@MissMoneyFairy she had a review and adjustments made early this year. She was pleased with the adjustments as they allowed her to lose weight, but when she went back in the summer there was an issue (increased cholesterol I think, which was bad as she has diabetic myocardiopathy, although I'm not sure of the details) and she went back onto the original regime, I think. Or it might have been the original regime with tweaks.

Most of the reason I'm on this thread is because I find it hard to get answers from DSis. @MujeresLibres comment about "burn out" sounds spot-on. She is sick to the back teeth of it all. Last night was another night of the alarm going off in the night and waking me up, so that's three times in seven days. I find the frequently broken sleep hard, and that's only a tiny insight into what she is dealing with.

if you're sister lives alone it would definitely be worth her taking a look at the Medical Detection Dogs charity website - it sounds like she would be an ideal candidate for a medical detection dog - they really are amazing.

Follow up question - surely 3.9 is too low for the alarm ? If she drives for example it means she shouldn’t be driving once the alarm goes off / there is no time for her to adjust things before she becomes dangerously low ?