Advice

[rebrascora]

So pleased you have the Libre fitted and that they have reduced your insulin doses, particularly that overnight one.

That is a little further to the rear of the arm than I place my Libre but it should be fine. I have had the odd one that "nips" a bit after application. Not sure if a fine hair on my arm gets caught the wrong way in the adhesive or if the filament catches a nerve, but it usually settles down after a day or two and I can't even remember which arm it is on after that. The number of times I scan the wrong arm and wonder why it isn't working!! Doh!
You need to be careful taking off close fitting clothing and bra straps, particularly sports bras, can catch on them if you are not paying enough attention, but it really is a great bit of kit and hopefully you will manage not to dislodge it.
Have they shown you all the features like the "Time in Target" function?
Are you using a reader or a mobile phone with the app? My phone isn't compatible so I only have the reader, but it works great. If you have any concerns just shout up. One thing to be aware of is that it doesn't like you lying on it and may give you a false low reading due to compression so always double check with a finger prick if it shows you are too low or too high.

Good luck and let us know how you get on. So pleased you are now getting the professional support you need.

 

[trophywench]

I sometimes get a gap rather than a compression low, but not at the same time every night and not every night anyway so it's no loss.

 

[LittleSunflower]

I don’t have a Libre but I can see why you’re concerned about knowing it. @rebrascora is one of many using the Libre so might have some helpful tips.

I’m glad your Levemir doses are now at a better, lower level than very early on. It’s far better to start like that then increase if necessary. Often when you first go on insulin, it gives your own islet cells a rest as they’re not struggling so much. They then have a chance to recover a little and make small amounts of insulin. I remember that phenomenon. No-one had told me so I stupidly thought perhaps it had all been an awful mistake and I wasn’t really Type 1 (I didn’t have the antibody tests until much later). If I’d known, I’d have understood better.

Now you’re in the system as a Type 1, everything should be less stressful. You’ll get the care and support you need. You’ll also have the possibility of access to other tech in the future eg an insulin pump. Make sure your GP has put your diagnosis on your notes/computer next time you speak to them.

If you feel up to reading, there are a couple of great books about Type 1. You don’t even have to read them now. Just having them there is like taking control yourself. One of the books is American so you have to convert the units but I really liked the chatty way it was written and it made me feel better and less alone with my problems and emotions.

That book is Think Like a Pancreas’ by Gary Scheiner.

The other book is Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas (ignore the title - it’s great for adults too)

I hope you’re feeling better physically now. Be kind to yourself. It does take a while to get used to everything. Enjoy your weekend - and let us know how your Libre goes and what your blood sugar does during the night.

Thank you so much for your ongoing support and advice Inka, it really is appreciated. I went through the process of not believing it was Type 1 too, probably still in that stage if I’m quite honest.. some days I feel like I’m not really here if that makes any sense. Like I mentioned before, they believe I’m still in the ‘honeymoon’ period but I have to admit, knowing I didn’t have to take night time insulin last night was such a relief, I had an earlier night for the first time in what feels like forever!

The Libre was about 1mmol lower than my actual BG meter check but I’ve been told this can happen within the first 24 hours as it’s still getting settled in. I was a 9.8 before bed, still had my snack of two digestives and milk. Woke up to a 7.3. That’s not bad without insulin at all really is it?
The Libre said I was an 8.0 before bed and this morning said a 4.6 so it was fairly off. I know it’s meant to stop you from pricking your finger but I honestly don’t mind it anymore so have been double checking. I’ve attached a photo from the app of my glucose through the night for you to see.

The nurse at the hospital mentioned I may become insulin dependant within the next 2 years or so and about the pump but I won’t allow myself to get worked up over that right now with everything else that’s going on.

Someone mentioned those exact two books to me before so I’ve gone ahead and purchased them. They look and sound like a good read.

I haven’t felt the best physically but that would be due to the physical sensations I experience when I am very anxious and/or stressed so I’m hoping it settles down soon and I can feel better as a whole.
I hope you are keeping well yourself and that you enjoy your weekend too

 

[LittleSunflower]

So pleased you have the Libre fitted and that they have reduced your insulin doses, particularly that overnight one.

That is a little further to the rear of the arm than I place my Libre but it should be fine. I have had the odd one that "nips" a bit after application. Not sure if a fine hair on my arm gets caught the wrong way in the adhesive or if the filament catches a nerve, but it usually settles down after a day or two and I can't even remember which arm it is on after that. The number of times I scan the wrong arm and wonder why it isn't working!! Doh!
You need to be careful taking off close fitting clothing and bra straps, particularly sports bras, can catch on them if you are not paying enough attention, but it really is a great bit of kit and hopefully you will manage not to dislodge it.
Have they shown you all the features like the "Time in Target" function?
Are you using a reader or a mobile phone with the app? My phone isn't compatible so I only have the reader, but it works great. If you have any concerns just shout up. One thing to be aware of is that it doesn't like you lying on it and may give you a false low reading due to compression so always double check with a finger prick if it shows you are too low or too high.

Good luck and let us know how you get on. So pleased you are now getting the professional support you need.

I’ve been very careful with my arm so far, probably a bit too much haha. I have ordered a little arm band holder for it as previously said so I think that will do the trick. It was difficult trying to get comfortable for sleep last night due to the placement but I managed. I did think it was a bit far back and towards my body but I shouldn’t complain as I couldn’t even bring myself to fit it! I’ve read first time Libre users often misplace it a little but I’m trying this new thing where I don’t worry about anything and everything .. I’ve been fortunate enough to have a Libre offered to me. It’s there to help not harm! (So I keep telling myself multiple times a day)
I’ve had a look at the Time in Target but I have some modules to complete on their website to learn more over the upcoming days. Just can’t do it right now as my brain has been in overload Diabetes Information mode!
The nurse scanned the reader first so my alarms are on there but I have been using the app as the community nurses want to see what my levels are doing. They both read differently, reader being more accurate than the app so far. I probably scan too much but it’s something new and I can’t get my head around the fancy technology that’s stuck in my arm for the next 14 days haha.
I replied to @Inka ’s post and there’s a photo attached of my levels throughout the night for you to have a look at if you like.
Thank you so much 🙂 hope you are keeping well

 

[rebrascora]

Yes, there is such a lot to take in that overload is common. Do things at your own pace and try not to worry. You got to this point OK didn't you and you are probably over the worst bit now which is those initial few days of testing and injecting. Yes there is still a lot to learn but you have the basics and from your first few posts after starting on insulin it was clear that you have a good sense of intuition with it, which is half the battle. learning to listen to your body and figuring out what it needs rather than what the nurse tells you or a book says or whatever guidance you are given. If you are happy scanning 100 times a day and it gives you reassurance then do it. You will soon learn to be more confident and/or the novelty will wear off and you will find a level which works for you. I have been using it for nearly a year and I still scan about 30 times a day and that works for me. Some of that time is just curiosity, but mostly there is a reason and it will be to help me make a decision about timing of food or exercise or if I need a correction and when and how much. If you are scanning lots and getting anxious about the results then that is the time to think about not using it at all but I find the Time in Target feature makes me more relaxed because I know that they don't expect me to keep it in that broad range all the time, just the majority so if I go above or below I use it to figure out why so that I can hopefully prevent it happening again, but not all are preventable. Too many things have an impact and not all are within our control including being inexperienced or just taking our eye off the ball.... it is human not to get 100% time in range all the time. I manage the odd day very occasionally when I keep manage to keep my levels in the green band but it is one day a month if i am lucky. Even non diabetics with a fully functioning pancreas fail to keep in range all the time, so don't fret about it when you cross the line.

As regards the sensor itself, you will get used to it and get to the stage that you forget it is there but it is all new and foreign at the moment. I am conscious of not lying on it at night but it doesn't stop me sleeping well. The shower is where I really have to concentrate as I always give myself a good scrub with exfoliating gloves and I have caught it a couple of times when I forgot and gave it a good scrub and it lifted. I now tape it with micropore before I get in the shower which makes it feel different as well as making it more secure so I don't scrub it off! The band sounds like a good idea but be careful not to have it too tight as that may affect the accuracy of the readings. I have taped mine down a little too firmly on occasion and it didn't like it and starts reading low, when I am not.

Anyway, I am waffling far too much to someone who is already suffering overload, so will wish you a lovely weekend and hope you are able to relax and enjoy it.

 

[Ljc]

Hi. When you put your own sensor on you can place it where it’s convenient for you on your upper arm, tbh I would find it awkward where the nurse has applied yours.

I have the old Libre , no alarms and I find it’s usually up to 2.0 below a finger prick. I usually put a new sensor on without activating it about a day before the old sensor runs out, this gives it time for the area to settle down.

You scan as often as you want to,,ok. It really doesn’t how many times you scan as long as it’s no more than 8 hrs between scans . Or for following the dvla rules when driving
When I was new to the Libre I was scanning 16+ times a day.

 

[LittleSunflower]

Yes, there is such a lot to take in that overload is common. Do things at your own pace and try not to worry. You got to this point OK didn't you and you are probably over the worst bit now which is those initial few days of testing and injecting. Yes there is still a lot to learn but you have the basics and from your first few posts after starting on insulin it was clear that you have a good sense of intuition with it, which is half the battle. learning to listen to your body and figuring out what it needs rather than what the nurse tells you or a book says or whatever guidance you are given. If you are happy scanning 100 times a day and it gives you reassurance then do it. You will soon learn to be more confident and/or the novelty will wear off and you will find a level which works for you. I have been using it for nearly a year and I still scan about 30 times a day and that works for me. Some of that time is just curiosity, but mostly there is a reason and it will be to help me make a decision about timing of food or exercise or if I need a correction and when and how much. If you are scanning lots and getting anxious about the results then that is the time to think about not using it at all but I find the Time in Target feature makes me more relaxed because I know that they don't expect me to keep it in that broad range all the time, just the majority so if I go above or below I use it to figure out why so that I can hopefully prevent it happening again, but not all are preventable. Too many things have an impact and not all are within our control including being inexperienced or just taking our eye off the ball.... it is human not to get 100% time in range all the time. I manage the odd day very occasionally when I keep manage to keep my levels in the green band but it is one day a month if i am lucky. Even non diabetics with a fully functioning pancreas fail to keep in range all the time, so don't fret about it when you cross the line.

As regards the sensor itself, you will get used to it and get to the stage that you forget it is there but it is all new and foreign at the moment. I am conscious of not lying on it at night but it doesn't stop me sleeping well. The shower is where I really have to concentrate as I always give myself a good scrub with exfoliating gloves and I have caught it a couple of times when I forgot and gave it a good scrub and it lifted. I now tape it with micropore before I get in the shower which makes it feel different as well as making it more secure so I don't scrub it off! The band sounds like a good idea but be careful not to have it too tight as that may affect the accuracy of the readings. I have taped mine down a little too firmly on occasion and it didn't like it and starts reading low, when I am not.

Anyway, I am waffling far too much to someone who is already suffering overload, so will wish you a lovely weekend and hope you are able to relax and enjoy it.

I’ve just had a hypo of 3.7 so treated it. Checked with blood to see if it had worked 15 minutes later, reading of 5.8 but the Libre said 4.7. I tried to scan again but it’s now saying unable to get a reading and to scan in 10 minutes, scanned again after the 10 minutes but it said the same error message. Has this happened to you? I’ve read it can play up if BS is rising quickly I hope it’s not a faulty sensor already!

 

[grovesy]

It can also happen when falling quickly too!

 

[rebrascora]

Well done on treating your hypo effectively!
It usually takes half an hour for Libre to catch up with BG levels (at least it does with the original Libre 1) because it measures interstitial fluid rather than blood so it lags behind the finger prick readings by about 15 mins and yes it may well be that the rapid change of direction Ie dropping then coming back up due to fast acting hypo treatment has confused it a bit, so best to give it half an hour and then try again. If you are using your phone it might help to use the reader and see if that will give you a reading.... if you have a reader. There have been some Libre 2 sensors which have had problems with this and end up failing altogether but with it happening when your BG levels are changing rapidly, I would imagine it isn't a faulty sensor but just the circumstance and it will be back working correctly again soon.

My Libre sensor just fell off this afternoon whilst I was working at the yard with 5 days to go (I was doing manual labour in the sunshine so maybe a combination of heat and sweat) so I think I am going to have to invest in a strap as that is the second one that has come adrift consecutively. I accept that the previous one I caught in the shower but I have been ever so careful with this one. If you don't mind me asking where did you order your strap from?

 

[LittleSunflower]

Well done on treating your hypo effectively!
It usually takes half an hour for Libre to catch up with BG levels (at least it does with the original Libre 1) because it measures interstitial fluid rather than blood so it lags behind the finger prick readings by about 15 mins and yes it may well be that the rapid change of direction Ie dropping then coming back up due to fast acting hypo treatment has confused it a bit, so best to give it half an hour and then try again. If you are using your phone it might help to use the reader and see if that will give you a reading.... if you have a reader. There have been some Libre 2 sensors which have had problems with this and end up failing altogether but with it happening when your BG levels are changing rapidly, I would imagine it isn't a faulty sensor but just the circumstance and it will be back working correctly again soon.

My Libre sensor just fell off this afternoon whilst I was working at the yard with 5 days to go (I was doing manual labour in the sunshine so maybe a combination of heat and sweat) so I think I am going to have to invest in a strap as that is the second one that has come adrift consecutively. I accept that the previous one I caught in the shower but I have been ever so careful with this one. If you don't mind me asking where did you order your strap from?

Thank you for the quick response. It’s started scanning again now thankfully. No wonder it had an error message; I went from the last reading of 4.7 all the way to a 9.3 within 30 minutes! Although it’s probably a blood reading of a 10 in reality.
Sorry to hear yours fell off all of the hard work you are doing by the sounds of things!
I got the arm band from Ebay (are links allowed on here?)

Freestyle Libre Sensor Flexible Armband Holder Protects Sensor PREMIUM STRAPS | eBay UK

Created using professional 3D printing techniques, this new Libre holder boasts a truly ergonomic design and great aesthetics. It provides unrivalled protection for your sensor, allowing you to undertake all of your daily tasks without worrying about the safety of your device.

www.ebay.co.uk

That’s the listing I chose but there are plenty on there to browse through. I’ve fallen into the trap of buying stickers or accessories for everything.. why not eh?

 

[rebrascora]

I find my Libre reads lower than a finger prick when I am low and higher than a finger prick when I am high and about the same when I am around the 4-7 range but again your levels need to be quite static to compare them with any degree of fairness. If they are changing then the libre is going to be 15 mins behind in whichever direction they are changing.

Thanks for the info re armbands. Deciding on a colour scheme is the most difficult part. Do I want something like peach which will blend in or green with a black strap to make a feature of it. They are a bit naughty in how they advertise the price as £3.95 and then when you click on what you want it jumps to £8.95! Can't afford 2 at that price! Probably best to have a bright colour so it is visible when running etc.

 

[Ljc]

Tip. It’s best not to rely on the sensor for treating hypo’s or hypers , with it’s due to the delay of glucose not reaching the interstitial fluid it samples rather than blood, so it’s easy to over treat and similar but in sort of in revers for hypers , they are also not as accurate at high or low BGs as test strip.

 

[LittleSunflower]

I find my Libre reads lower than a finger prick when I am low and higher than a finger prick when I am high and about the same when I am around the 4-7 range but again your levels need to be quite static to compare them with any degree of fairness. If they are changing then the libre is going to be 15 mins behind in whichever direction they are changing.

Thanks for the info re armbands. Deciding on a colour scheme is the most difficult part. Do I want something like peach which will blend in or green with a black strap to make a feature of it. They are a bit naughty in how they advertise the price as £3.95 and then when you click on what you want it jumps to £8.95! Can't afford 2 at that price! Probably best to have a bright colour so it is visible when running etc.

Libre says I’m a 13.2 now and I’m yet to have any dinner which is a bit concerning. Is there any way to bring levels down without insulin? Exercise or anything of the such? Haven’t been told or read much about treating hypers other than to test for Ketones at around 15+

& yes I was surprised when the price changed. I went with yellow (as it’s my favourite colour) and the black elastic so I’d support your green and black choice! 🙂

 

[PattiEvans]

Regarding Libre readings being different to blood glucose readings, it does pay to remember that not only are they reading different things (interstitial fluid as opposed to blood) which causes the delay, but blood glucose meters can be +/- 15% out. Also taking blood from different fingers at the same time can result in the readings differing a fair bit. So please don’t stress it too much. The device is wonderful for showing an overall picture. For what it’s worth, if you are using the phone app ensure you have the latest version 2.5.3.6373 or later as they have added an algorithm that makes it really accurate.

Lastly, don’t stress too much because I’ve read this thread through and you are doing brilliantly! I wish I’d been as clued up so soon after diagnosis.

HUGS!

 

[LittleSunflower]

Hello all, me again!

Just a little update. My previous reduction of Levemir to just one injection of 4 units in the morning has now been reduced again to 3 units as of today. This is because I had a night time hypo 2 nights ago, luckily the libre alarm woke me up. Upon checking, I was 3.9 but the arrow was facing completely downwards which is not a good sign. I was unable to test my blood at this time so treated with half a carton of orange juice and a digestive biscuit which helped. I was 9.9 before I allowed myself to go back to sleep again.
I was 7.1 before sleep that night and within 2 hours I was below 4.

I have been feeling slightly better since getting the libre but not 100%, still early days yet I suppose.

I’m just wondering if anyone else experiences or can help explain why I’m dropping so much during the night, even with no levemir before bed like before?
Yesterday I took the 4 units in the morning and was 11.7 after my bedtime snack/ before sleep. When I woke up this morning I was 4.9!
The community nurse says I shouldn’t be any lower than a 9 (range between 9-10) before bed as I am dropping so much, even without those units of insulin.
I haven’t been able to have an afternoon nap recently either as it seems when I lie down or sit down for periods of time, my levels just drop. For this reason, I feel like I’m constantly eating to keep my levels stable. I have to say, I’m quite worried about my eyesight due to the constant fluctuation in my levels throughout the day (now that I can see that with the libre data).

It seems my anxiety may be playing up as I’ve had a couple moments of heart palpitations in the past 2 days and I’m struggling with injecting in the morning by myself - I think maybe because it’s a once a day thing, I am overthinking and tensing up too much.

I’ve also been discharged from the community diabetic team as I’m now under the care of the Hospital (after only one visit) which I’m still unsure about.

Hope you are all well x

 

[Inka]

If by community diabetes team you mean your GP team, then yes it’s good you’re now under the hospital instead. They are specialists and know a lot more about Type 1.

What you’re describing is very common close to diagnosis - being high then going low with no recent insulin. It’s probably your own insulin responding to your high sugar - too slowly and too much (hence you’re going slightly low). Apologies if I’ve already said this, but when I was first diagnosed, I tried not taking my insulin. I shot up to around 13 but went down to 3.7 by lunch with no insulin. But obviously that’s not ideal (going that high, then dropping) so I reverted to taking my insulin and then my post-meal spike was ok. When needed, I topped up with a small snack. At this time I was only on 1 unit of basal. It was my bolus/meal insulin that was doing most of the work because it allowed me to eat without spiking. That’s one reason why I harped on about you getting the Novorapid. It’s generally meals that are the issue and Novorapid or similar deals with that and doesn’t hang around in your system like the basal does.

Sorry your anxiety is bothering you. It’s natural to be anxious after a diagnosis, and sometimes I think anxiety and stress bubble away under the surface then make themselves known at what seem like silly times, but it’s not so much a response to that moment, but a general anxiety about the whole situation that has managed to break through.

 

[rebrascora]

Insulin needs change and I am currently going through a phase where I need little or more often no evening Levemir and yet rather too frequently hypo at 3-4am, when there is almost no active Levemir left in my system from the morning 7am dose.... Levemir is supposed to be active over about 18hrs but tails off quite significantly after about 10-12 hours.

I can't figure out if my night time hypos are as a result of my basal needs dropping dramatically at that time of the night or Levemir being active in my body for longer than it should or my gut feeling is that my muscles replenish their stores when I lie down and suck the glucose out of my blood whilst i sleep. I did think perhaps I couldn't go dangerously low with only that tail end of the Levemir active (non diabetic people drop below 4 through the night probably more often than we realise but will not go dangerously low) but I went down to 2.9 at 5am the other morning with no evening Levemir on board.

There was a time when I needed 7 units of Levemir in the evening and never hypoed a year ago so that shows you how variable insulin needs can be. I now need more on a morning and I am up to 22 units to keep me steady through most of the day but I start to go a bit low around 6pm. I find that a higher protein and fat, low carb meal in the evening without a bolus will stop the hypos but I may need a couple of units of Levemir to deal with it, which I know is odd using Levemir to cope with food but bolus insulin would kick in too quickly. You could try a protein snack like a boiled egg with mayonnaise or some cooked meat or cheese at bedtime instead of a sandwich or biscuit and see how that works. Protein takes about 2 hours to start breaking down and releasing glucose , so that might give you a boost of glucose through the night when you are dropping low.

 

[PattiEvans]

Barbara, have you by any chance lost weight recently? I've lost 14 lbs in the last year and it has substantially reduced my basal needs. As far as Levemir is concerned This graph seems to indicate that the lower the dose you need per kg of body weight, the shorter the duration of action. Odd really where your experience is concerned. Of course high fat meals do take longer to absorb. The beauty of the pump is the ability to extend the bolus over a period of hours. More or less what you are trying to do with the Levemir, but Levemir will of course continue working for up to 12 hours.

 

[rebrascora]

Barbara, have you by any chance lost weight recently? I've lost 14 lbs in the last year and it has substantially reduced my basal needs. As far as Levemir is concerned This graph seems to indicate that the lower the dose you need per kg of body weight, the shorter the duration of action. Odd really where your experience is concerned. Of course high fat meals do take longer to absorb. The beauty of the pump is the ability to extend the bolus over a period of hours. More or less what you are trying to do with the Levemir, but Levemir will of course continue working for up to 12 hours.

I appreciate your thoughts Patti, but I am the same weight I was a year ago. It was increased exercise which appeared to trigger the start of the nocturnal hypos and reduction in evening basal until eventually I was still hypoing with none, which is why I came up with the idea that my muscles must be replenishing their stores during the night rather than it being the tail end of the Levemir. I assumed that I therefore wouldn't go too low but that 2.9 the other morning, 22hrs after my morning Levemir injection, says that isn't a safe assumption. I have sometimes found, like LittleSunflower, that my levels will drop if I have a nap too.... not always but I rarely do that anyway, but enough to see a pattern... again suggesting to me that muscles are taking the glucose out when I am lying down resting. I joke to my sister that if I slept 24/7 I wouldn't be diabetic.... or need insulin anyway!
Interestingly I have had to increase my morning basal since I had my Covid vaccine in Feb. I was on 16 units and I am now on 22 and I wonder if the vaccine triggered my immune system to take out a few more of my remaining beta cells. The 22 units is holding me reasonable steady in the morning but I am currently having a pattern of going low at this time of night (particularly after a busy/active day) so the 22 units is just a bit too much at this time of day but it means I can have a bolus free low carb evening meal rather than be injecting corrections every 2 hours in the morning if I reduce the Levemir dose. I know a pump would resolve this but I have reservations for a number of reasons and the way I see it, things could totally change again in a few weeks or months and I could manage perfectly with my Levemir again.

I would welcome any comments you have although I must apologise to @LittleSunflower for hijacking her thread. Hopefully we can both learn from your comments/experience.

 

[LittleSunflower]

Sorry not to reply directly to your responses to my last post but I just cannot win today. My levels have been up and down constantly. I had a hypo of 3.6 earlier (according to the libre when my bloods said 5.1), tested again and my libre said 3.3 with the downwards arrow so I acted with half a carton of orange juice and ate my dinner as usual, then shot up to a 14.1 a couple of hours later with an upwards arrow. I did a tiny bit of exercise in hopes it would decrease and my levels plummeted to 7.0 within one hour with the libre arrow facing down but to the right. I am so frustrated with this, I don’t know what’s going on. Safe to say I will be going to bed in tears tonight with the added anxiety of having another night time hypo.