Terrified Of Recent Night Time Hypos.

[BlaiseS]

I don’t even know if I’m really asking a question here...

Since the weather has become more mild and breezey I’ve been having a lot of difficulty keeping my daytime blood sugars within range (they’re often between 11-15 no matter how much insulin I take and begin to rise as soon as I hit the 5 or 6 mark).
However, that’s not what I’m concerned about, for the last 4 nights I have been having bad hypos. On a usual day, I will drop as low as 3.4 and wake up immediately but the last few nights I haven’t woken until my blood sugars are around 2.1. As I use the Libre, I’m also aware it’s a sudden crash effect that’s happening, rather than gradually becoming low through the evening.
I’m honestly petrified, and believe it’s contributing to my all day highs as I tend to panic treat my night time lows. I dropped my long acting by 4 units last night but the thought of this happening for a further 2 nights (at least) makes me not want to sleep until it’s resolved.

I guess what I’m asking is if anyone else is experiencing this with the milder weather? And how can I combat the fear? A snack before bed seems almost impossible with my day time highs

 

[kitedoc]

Hi @BlaiseS, Night time hypos are terrifying, in my experience. Perhaps the best course is to contact your DSN or doctor to discuss your insulin regime and what to do with it. Reducing the insulin which is working at night sounds like what I have done in the past.
Also I know my insulin doses and sensitivity can alter with changes in season and weather. Not sure if that is what is happening for you but certainly preventing night-time hypos is the priority which your health team is best able to help you with.

 

[Juicyj]

Hi @BlaiseS I am no fan either nighttime ones are the worst, so taking evasive action now is essential as they are a regular occurrence and would point to you taking too much basal - Call your Dsn today and get advice in doing this if your not confident about making adjustments as Kitedoc has suggested.

 

[EllieM]

I agree that night time hypos are terrifying, but I wouldn't assume that they're quite as low as the libre tells you, since a number of people find it is significantly inaccurate at very low levels. Also, there are a number of add ons you can buy for the libre that will act to send an alarm once your blood sugar goes below a certain level. If the libre works for you, then I would suggest investigating that option....
But I agree, lowering basal also sounds like a good idea
Good luck

 

[Alison54321]

Night time hypos are nasty. Is your blood sugar dropping at around the same time every night? You say it will take a few days to change, are you taking Tresiba or Toujeo?

Levimir, and Lantus definitely have peaks. Tresiba isn't supposed to, but some people have found that for them splitting the dose, or changing the time helps.

Worth a google, or someone here might know.

 

[himtoo]

perhaps while you are making adjustments to your basal insulin it would be helpful to set an alarm on your phone to wake you a bit earlier than when you have been experiencing the hypos .this test could allow you to take preventative action ...
and keep the snack beside the bed to minimise disruption should you need to eat something.

 

[johnpol]

Nightime hypos are the worst, went through a big spell of them for about a month until I realised mine are linked to my training and on consultation with my DSN , I now run temp basal which has helped massively. I agree that you should ring your DSN quickly to discuss how you deal with these. And the advise about sweets/snacks at bedside is what I do. Sending a hug your way as Night hypos are terrible.

Take care.

 

[BlaiseS]

Thank you everyone for your replies!

@EllieM I have heard of the blucon and another device similar and I’m looking into it more now this is happening! But, like you said, the Libre can be inconsistent with blood tests when low (I always blood test when below 4 to see where I’m
actually at) and I’m worried about being woken up multiple times per night when I’m not actually low/ false alarms in my non-understanding workplace. Do you know if these have a vibrate function?

@himtoo I hadn’t thought about that! As I’m comfortable with making my own changes with my insulin I was really just looking for something until changes in my basal worked. I’ll definitely be setting an alarm tonight.

Again, thank you so much everyone for the replies. I’ll be sure to contact my diabetes team if things don’t work themselves out.

 

[Scott-C]

But, like you said, the Libre can be inconsistent with blood tests when low (I always blood test when below 4 to see where I’m
actually at) and I’m worried about being woken up multiple times per night when I’m not actually low/ false alarms in my non-understanding workplace. Do you know if these have a vibrate function?

Hi, BlaiseS, you ask about libre inaccuracies and alarms, so thought I'd chuck in my tuppence worth. I've been using the blucon transmitter with xDrip+ for about a year now.

If you get one of the transmitters, either blucon or miaomiao, and then pair it up with either the xDrip+ app on android or the Spike app on ios, the apps let you calibrate the libre sensor output.

This irons out a lot of the libre inaccuracies, so those bizarre readings which libre sometimes throws at us become way more accurate. It really tidies up sketchy sensors, so those, "it says LO, meter says 4" situations don't quite disappear altogether but are vastly reduced.

Calibration is basically waiting till your levels are stable, taking a bg meter test, let's say it reads 5.5, then typing that reading into the app to tell it, "I'm now 5.5, so the message you're getting from the sensor right now means 5.5, not whatever the factory calibration said." It makes sensor readings a lot more accurate.

So let's say you've got miaomiao/xdrip+ or spike running and it's reasonably well calibrated. That set-up is not going to throw you a huge amount of false alarms.

I've not used Spike so can't say anything about that, but the alarms in xDrip+ have a huge amount of flexibility built into them.

You can set up just one or two or lots, and set up your own parameters for each of them, including the ring tone it plays, or just vibrate, the times of day they are active, how long they fire for if not cancelled, how long they snooze for after being cancelled, and a few other things.

If you don't want alarms at all during the day to avoid bothering workmates, you just type in the hours you want to be alarmed, say 11pm to 9am.

If you don't want woken up multiple times during the night due to false lows: (a) calibration will reduce false lows, so it won't happen too often, and (b) when you set up the alarm, you can give it a pre-set "snooze time" like an alarm clock. That means it won't just constantly ring until you get out of hypo-land. Let's say you've set the alarm ring-point at 4.3 for a bit of leeway, and the snooze time at 60 min (it can be set at anything you want). If you hit 4.2, it'll ring, you cancel the alarm, do whatever biscuit/dextro stuff you consider appropriate, it'll check the situation 60 mins later after the snooze has timed out and only ring again then if you're still below 4.3. Or, you can disable it so it won't ring again at all.

If you're worried about hypoing again after falling asleep during the snooze time for the 4.3 alarm, you can adjust the snooze time, or have previously set up a lower, say, 3.5 alert which will kick in irrespective of whether the 4.3 is still snoozing or not.

That all sounds like a lot of impenetrable techy sh*t, Blaise, but if you get one of the transmitters and the app, they're pretty easy to set up. I've had a few bad night hypo situations in the past, and my blucon/xDrip+ rig is simple, cheap, easy to use but gives me a lot of peace of mind.

 

[himtoo]

Hi, BlaiseS, you ask about libre inaccuracies and alarms, so thought I'd chuck in my tuppence worth. I've been using the blucon transmitter with xDrip+ for about a year now.

If you get one of the transmitters, either blucon or miaomiao, and then pair it up with either the xDrip+ app on android or the Spike app on ios, the apps let you calibrate the libre sensor output.

This irons out a lot of the libre inaccuracies, so those bizarre readings which libre sometimes throws at us become way more accurate. It really tidies up sketchy sensors, so those, "it says LO, meter says 4" situations don't quite disappear altogether but are vastly reduced.

Calibration is basically waiting till your levels are stable, taking a bg meter test, let's say it reads 5.5, then typing that reading into the app to tell it, "I'm now 5.5, so the message you're getting from the sensor right now means 5.5, not whatever the factory calibration said." It makes sensor readings a lot more accurate.

So let's say you've got miaomiao/xdrip+ or spike running and it's reasonably well calibrated. That set-up is not going to throw you a huge amount of false alarms.

I've not used Spike so can't say anything about that, but the alarms in xDrip+ have a huge amount of flexibility built into them.

You can set up just one or two or lots, and set up your own parameters for each of them, including the ring tone it plays, or just vibrate, the times of day they are active, how long they fire for if not cancelled, how long they snooze for after being cancelled, and a few other things.

If you don't want alarms at all during the day to avoid bothering workmates, you just type in the hours you want to be alarmed, say 11pm to 9am.

If you don't want woken up multiple times during the night due to false lows: (a) calibration will reduce false lows, so it won't happen too often, and (b) when you set up the alarm, you can give it a pre-set "snooze time" like an alarm clock. That means it won't just constantly ring until you get out of hypo-land. Let's say you've set the alarm ring-point at 4.3 for a bit of leeway, and the snooze time at 60 min (it can be set at anything you want). If you hit 4.2, it'll ring, you cancel the alarm, do whatever biscuit/dextro stuff you consider appropriate, it'll check the situation 60 mins later after the snooze has timed out and only ring again then if you're still below 4.3. Or, you can disable it so it won't ring again at all.

If you're worried about hypoing again after falling asleep during the snooze time for the 4.3 alarm, you can adjust the snooze time, or have previously set up a lower, say, 3.5 alert which will kick in irrespective of whether the 4.3 is still snoozing or not.

That all sounds like a lot of impenetrable techy sh*t, Blaise, but if you get one of the transmitters and the app, they're pretty easy to set up. I've had a few bad night hypo situations in the past, and my blucon/xDrip+ rig is simple, cheap, easy to use but gives me a lot of peace of mind.

thanks -- that is brilliant and all of the kind of stuff i have been wanting to know too ..maybe i can hit ya up for some help when i get one ( nearly there for pressing the order button -- LOL )

 

[Scott-C]

thanks -- that is brilliant and all of the kind of stuff i have been wanting to know too ..maybe i can hit ya up for some help when i get one ( nearly there for pressing the order button -- LOL )

Press that button, himtoo!

Libre's great on it's own, but the transmitters take it to a whole different level.

Like I say, haven't tried miaomiao or spike, but if you've got any questions about xdrip+, I'm happy to offer a view, so fire away. It only runs on an android phone - if you're on iPhone, I know nothing about Spike.

It's made my T1 life a lot more comfortable and predictable, so I'm happy to blether about it.

It's a 'work in progress", there's no official documentation or user manual, no CE marks, no FDA or NHS approval, a dietician at a DAFNE review meeting asked me, "look, Scott, is this, you know, legal?", so it's a use-at-own risk gig, but it's been designed by parents of T1 kids who aren't going to risk their sprog's safety, so that's good enough for me. And Tim speaks highly of it too.

My approach to it was sitting down in a pub one afternoon and pressing every button on it to see what happened.

I've put a link below to where you can get it, it's the most recent .apk file which is downloaded to the phone and then find that and click to install. It might be worthwhile installing it just to have a play around with it and get broadly familiar with it before the transmitter arrives.

Good luck, it's a brave new world!

https://github.com/NightscoutFoundation/xDrip/releases

 

[LooperCat]

@Scott-C has pretty much covered everything I would have said - he’s using Bluecon with an android setup; I’m using MiaoMiao with an iPhone setup - which in my case means an iPhone, the Spike app, a MiaoMiao transmitter and a Pebble watch (£26 second hand on eBay, I’ve got a couple) . I only have the alarms active at night, during the day I just glance at my watch to see what’s happening. As a setup I’m thrilled with it, especially now I’ve started on a pump this week.

So if I can help with MiaoMiao, Spike and apple setups, do PM me.

 

[LooperCat]

thanks -- that is brilliant and all of the kind of stuff i have been wanting to know too ..maybe i can hit ya up for some help when i get one ( nearly there for pressing the order button -- LOL )

Press it, ya know you want to! What setup are you planning on running?

Just as an aside, with Nightscout, hublet can keep half an eye on me when he’s out and I’m home alone, at least while I’m getting the hang of my pump. He’s turned off all the alarms except for the urgent low glucose one, so if that goes off (3mmol) he’ll call to see if I’m ok. And if I don’t answer he’ll get someone nearby to check on me - my best mate has offered to download it too. It’s giving me enormous peace of mind.

 

[alphabeta]

Have you been drinking a lot of water before bed?

 

[rorshach]

I’m so sorry this has been happening. I suffered with this too much and after many hospitalisation I ended up buying the dexcom (I’m not saying this was the easy option as I now have to live the extreme pared back life) but I’m now not in hospital and I’m doing better. I hear great things about the nightscout and miow thing.

 

[himtoo]

Press it, ya know you want to! What setup are you planning on running?

Just as an aside, with Nightscout, hublet can keep half an eye on me when he’s out and I’m home alone, at least while I’m getting the hang of my pump. He’s turned off all the alarms except for the urgent low glucose one, so if that goes off (3mmol) he’ll call to see if I’m ok. And if I don’t answer he’ll get someone nearby to check on me - my best mate has offered to download it too. It’s giving me enormous peace of mind.

i have an android phone ( pay as you go ) and beyond that am thinking miao miao ..................but i am pretty cluless .......probably none of you are old enough to remember when vinyl was all there was and cassette tapes came on the scene ........and recording LP's onto a cassete was illegal and blah blah blah...............but a small part of me is still connected to that world ( due to age ) and i suppose i need babysitting through .....sorry i am such a wimp

 

[LooperCat]

i have an android phone ( pay as you go ) and beyond that am thinking miao miao ..................but i am pretty cluless .......probably none of you are old enough to remember when vinyl was all there was and cassette tapes came on the scene ........and recording LP's onto a cassete was illegal and blah blah blah...............but a small part of me is still connected to that world ( due to age ) and i suppose i need babysitting through .....sorry i am such a wimp

I remember all that, hehehe. I’m two extremes now with music. Vinyl or streaming

 

[kitedoc]

i have an android phone ( pay as you go ) and beyond that am thinking miao miao ..................but i am pretty cluless .......probably none of you are old enough to remember when vinyl was all there was and cassette tapes came on the scene ........and recording LP's onto a cassete was illegal and blah blah blah...............but a small part of me is still connected to that world ( due to age ) and i suppose i need babysitting through .....sorry i am such a wimp

Hi @himtoo, I remember and empathise !!

 

[Khushi Nagpal]

I don’t even know if I’m really asking a question here...

Since the weather has become more mild and breezey I’ve been having a lot of difficulty keeping my daytime blood sugars within range (they’re often between 11-15 no matter how much insulin I take and begin to rise as soon as I hit the 5 or 6 mark).
However, that’s not what I’m concerned about, for the last 4 nights I have been having bad hypos. On a usual day, I will drop as low as 3.4 and wake up immediately but the last few nights I haven’t woken until my blood sugars are around 2.1. As I use the Libre, I’m also aware it’s a sudden crash effect that’s happening, rather than gradually becoming low through the evening.
I’m honestly petrified, and believe it’s contributing to my all day highs as I tend to panic treat my night time lows. I dropped my long acting by 4 units last night but the thought of this happening for a further 2 nights (at least) makes me not want to sleep until it’s resolved.

I guess what I’m asking is if anyone else is experiencing this with the milder weather? And how can I combat the fear? A snack before bed seems almost impossible with my day time highs

This could be something that is already in your routine, or something you occasionally do, but you could try setting a couple (1 or 2) alarms in the night, where you get up and check your blood sugar. This way you can combat your fear by knowing you will be awake later, for say you put your alarm for 2/3 hours after dinner/bed, and will be able to check your blood sugar and treat any hypos.

However, I quite understand if not done before, this will be difficult, and may not fit in with daily schedules, but it could be worth a try!!

 

[Scott-C]

and cassette tapes came on the scene

Lol, my grandpa was into cutting edge technology and I can still remember as a 5 yr old watching his reel to reel tape recorder in wonderment.

I still have a few C90 cassetes of John Peel shows recorded in my teens....