Diagnosed just over 2 weeks ago

[Laura24]

Hello everyone 🙂,

I am now a fellow T1 diabetic sufferer. I was diagnosed almost 3 weeks ago now after been admitted to hospital. I am 28 and of course this is a major shock and change to my life, as it is to anyone who gets diagnosed with this.

I have a libre which I constantly keep checking and almost obsessed with. I haven’t been sleeping well and wake up almost every house and check my blood sugars on the libre. I need to break this habit. Has anyone else every been like this and if so how did you stop this bad habit? I’m overly anxious and my mind is solely focussed on my BG. Any tips would be great.
Also my libre sometimes goes off to say it’s low as my low alarm set at 4.3. However my finger prick is at 5. Something… would you still take a hypo treatment?
Thanks

 

[Inka]

Welcome @Laura24 🙂 I’ve had Type 1 almost 30 years. It’s a major shock to start with but it does gradually get easier, I promise.

Interestingly, what you’ve described about obsessing over the Libre isn’t uncommon, especially amongst the recently diagnosed, and it’s one of the major reasons I think it’s a bad idea to give to people so early on. Please step away from it if it’s stressing you. Personally I’d stop using it. That’s an easy way to remove the burgeoning obsession.

Type 1 is a marathon not a sprint. You’ll burn yourself out if you don’t pace yourself. Perfection is impossible - yes, impossible. You can let diabetes take over your life, or you can put it in its place.

If your Libre and fingerprick disagree, you go by the fingerprick. Always.

 

[Laura24]

Hello,

I decided not to get it when I was being discharged from hospital however my diabetes team said it’s good to have so they can monitor it too. I do feel it is a bit of a safety net for me but I just need to learn to limit my scanning!

How do you find counting carbs? I sort of have the hang of it but I think it will be hard working out carbs when out at a restaurant. I find the pictures on the carbs and call book quite misleading. I looked at one picture say for example of rice it looked a decent size but actually weighing it out it was far too much for me. Did the counting/ estimating take time? I’m not on a ratio yet just getting the hang of carbs.

Great thanks for your advice! I always go by the prick usually but if you were out and about and couldn’t stop to do finger prick you’d go by the libre and maybe take a hypo treatment?

Thanks

 

[Inka]

If in doubt, always take a hypo treatment 🙂 So yes, if you only have the Libre and can’t fingerprick for some reason, treat it as a hypo. Also, if you ever feel really hypo, treat it and then test. Don’t waste time faffing with a test.

I don’t use Carbs and Cals as I don’t like it and find it a bit basic. I do use good quality digital scales and plastic measuring spoons and jug. Those are very useful. The most useful thing though is experience, which you’ll gain over time. You’ll gradually learn to eyeball a plate of food in a restaurant and estimate the carbs with no need to look at books or apps 🙂

Yes, the Libre will be more use to your team. If you consider it in that way - a tool mainly for your team - then that might help. In the early months, avoiding hypos is your biggest priority. You’ll find your own insulin will sometimes randomly kick in, and this can make you go low when you’re not expecting it, so just keep that in mind. Sometimes blood sugar can be quite erratic in the honeymoon period, and that’s normal and not your fault at all.

 

[Laura24]

Great thanks for the advice on the hypo information there. I’m wondering if it’s at 4.5 and falling fast would you just take a few jelly babies for example instead of 4/5?

Yep I hope it comes naturally soon, just a lot of information to take in and everything involves a lot of planning and thought before you do anything! I have some scales and measuring jugs etc. i find I’m eating more than ever and having 3 meals a day when I wouldn’t normally at times.

I have a fear of a hypo during the night I think that’s why I’m not sleeping overly great. It would be nice to meet folk who have recently been diagnosed to see how they feel/ get on but I’m not sure if there is anything like that because of covid. Did you do the DAFNE course?

 

[Inka]

If I was 4.5 and falling, yes I’d take something - probably a Dextro tablet or two and a small amount of longer-acting carbs. It would depend what I was about to do eg eat a meal, exercise, etc.

The fear of nocturnal hypos is very valid and something I sympathise with. One benefit of the Libre 2 is that it has alarms and so that should help you relax a bit more at night. Having a target level to go to bed on eg 8mmol or whatever should also help.

 

[Laura24]

Great thank you - so helpful!

Yes the alarms are good however sometimes I get a message saying ‘alarms are unavailable, scan sensor’ and I only see this if I actually go into the app itself I see the red exclamation mark. What is worrying I never get a notification on my phone when this is happening, so you could go a long time without knowing, if not checking the app. My phone is always in range so I’m not sure why this happens.

I try to go to bed 8-9 as I’ve been advised. Do people always wake up if having one?

 

[Inka]

I use the Libre reader 🙂 Yes, hypos will normally wake you but it’s not 100% guaranteed so it’s always best to be cautious and run a bit higher during the night. One sign of a hypo is strange dreams or restlessness, as well as sweating.

If you try to avoid low sugar as much as possible, you’ll retain good hypo awareness (ie your body will recognise one) and that’s important.

 

[Laura24]

Great thanks for all your help and information 🙂. No doubt have more questions later on. Thanks

 

[Inka]

Great thanks for all your help and information 🙂. No doubt have more questions later on. Thanks

You’re very welcome 🙂 Ask as many questions as you want. Nothing is too trivial or ‘silly’🙂

 

[Bruce Stephens]

I have a libre which I constantly keep checking and almost obsessed with. I haven’t been sleeping well and wake up almost every house and check my blood sugars on the libre. I need to break this habit. Has anyone else every been like this and if so how did you stop this bad habit?

Since I got one (two or three years ago, I think) I've averaged about 45 times a day, and I've just stopped worrying about it. If I wake up over night I'll scan just to check (though now they have alarms maybe I'll stop that eventually).

It sounds like you may be finding you're scanning too often and that that's disturbing your sleep and perhaps at other times, and that's worth looking at. I can't help with that, though your DSN might have some ideas.

But I think don't believe people who suggest you should only scan a few times a day (only when you expect to act on the number).

 

[rebrascora]

I found the fear of nocturnal hypos much worse than the reality. I went through a spell of them about 20 months into my diagnosis and even though I reduced my evening basal insulin down to 0 (I am on split dose Levemir) I was still dropping into the red at night but I was doing a lot of physical activity at the time. The fact that I woke up and dealt with them gave me a lot of confidence that I can manage night time hypos just as I do daytime ones and much as they are to be avoided if at all possible, I no longer worry about them or lose sleep over them. They happen occasionally still and I work out strategies to try to prevent them but experience has made me much less anxious about them.
I started off finger pricking for the first year and a bit and I think it can be helpful to learn to rely on that in the first instance, but I also understand that from a DSN's point of view, being able to access Libre data makes it much easier to see what is going on in those initial days and weeks than looking at a limited number of snapshot finger prick readings.

I sleep with my Libre under my pillow. I used to wake up through the night and scan frequently when I first got it but you eventually become more relaxed about it. I have the Libre 1 which doesn't have the alarms and to be honest I am quite happy about that now because I have learned to trust my body and I don't want to be awakened by alarms going off in the night, possibly unnecessarily, which can happen with Libre 2. I have confidence in my body to wake me when levels drop too low and I have confidence in my ability to manage my diabetes pretty well and those 2 things mean that I sleep very well these days, but if I do wake up hypo, I take my treatment and go back to sleep. I will have been diagnosed 3 years in Feb and I have felt confident like this for at least a year.

The DAFNE course was a big help to me in understanding my diabetes better and giving me confidence to adjust my basal insulin doses particularly. I learned a lot from this forum in advance of the course, so I went into the course with probably a lot more knowledge than most of the others even though some had been diagnosed a lot longer, but I think it gave me a structured approach which I then adapted to my own strategy of managing my diabetes and that gave me confidence in my decision making. I don't necessarily follow DAFNE rules and in fact I often break them but that is because I now know what works for me and the key thing with good diabetes management is being your own expert.

All I can say is that it is normal to be anxious and it is normal to be a bit obsessive about Libre particularly in the early weeks but you will get over it and learn to use it wisely, but if you feel you need a break from it, that is also important. It was one of the things that I discussed with my consultant when I first got it prescribed .... that I could take a break from it as and when I needed to. I will confess that I feel quite vulnerable going to bed without it for the first couple of nights but after that I am OK.

Time and experience is the key to it all and there are no short cuts to that.
.

 

[Laura24]

Since I got one (two or three years ago, I think) I've averaged about 45 times a day, and I've just stopped worrying about it. If I wake up over night I'll scan just to check (though now they have alarms maybe I'll stop that eventually).

It sounds like you may be finding you're scanning too often and that that's disturbing your sleep and perhaps at other times, and that's worth looking at. I can't help with that, though your DSN might have some ideas.

But I think don't believe people who suggest you should only scan a few times a day (only when you expect to act on the number).

Hi

 

[Laura24]

Hi

 

[Pat91]

Hello Laura, welcome to the team, I was only diagnosed myself at the start of the year age 29 so fairly new to type1 myself. Your in great company on this forum as I have found the guys on here really friendly and helpful when I have needed some advice or support, as others have said it does get easier. Strangely enough I can't imagine my life without type1 now and it's only been jist under a year.

 

[Laura24]

Hell

Hello Laura, welcome to the team, I was only diagnosed myself at the start of the year age 29 so fairly new to type1 myself. Your in great company on this forum as I have found the guys on here really friendly and helpful when I have needed some advice or support, as others have said it does get easier. Strangely enough I can't imagine my life without type1 now and it's only been jist under a ye

 

[rebrascora]

I average about 30 scans a day and have done from the start... maybe slightly more in the first few weeks.... Probably nearer 60 in the first week or two I think. About 30 seems to enable me to make good decisions and there is research to suggest that the more you scan the better your diabetes management becomes and obviously it costs nothing to scan more often, so it is just about finding a balance with your mental health and other aspects of your life, so that the Libre doesn't take over.

 

[Laura24]

Hello Laura, welcome to the team, I was only diagnosed myself at the start of the year age 29 so fairly new to type1 myself. Your in great company on this forum as I have found the guys on here really friendly and helpful when I have needed some advice or support, as others have said it does get easier. Strangely enough I can't imagine my life without type1 now and it's only been jist under a year.

Hello,
I hope you are well. It’s nice to speak to someone who is fairly new and same age. How did you feel at the start ? Right now I’m having more downs than ups. It is the only thing I think about right now. Did you feel the same? Did it just take some time to settle and feel better about it? Sorry still learning how to use this form. Managed to reply but not directly to you!

 

[Laura24]

I average about 30 scans a day and have done from the start... maybe slightly more in the first few weeks.... Probably nearer 60 in the first week or two I think. About 30 seems to enable me to make good decisions and there is research to suggest that the more you scan the better your diabetes management becomes and obviously it costs nothing to scan more often, so it is just about finding a balance with your mental health and other aspects of your life, so that the Libre doesn't take over.

Hello,

Yeh I’m roughly about 30 scans a day right now! However during the night at times I’m almost every hour which isn’t good. Every time I wake up I just scan. Then if I see it dropping I keep checking etc. I’m hoping after time I won’t be like this 🙂. It’s nice to know there is nothing wrong scanning it more often if it keeps you track BG.

 

[Laura24]

I found the fear of nocturnal hypos much worse than the reality. I went through a spell of them about 20 months into my diagnosis and even though I reduced my evening basal insulin down to 0 (I am on split dose Levemir) I was still dropping into the red at night but I was doing a lot of physical activity at the time. The fact that I woke up and dealt with them gave me a lot of confidence that I can manage night time hypos just as I do daytime ones and much as they are to be avoided if at all possible, I no longer worry about them or lose sleep over them. They happen occasionally still and I work out strategies to try to prevent them but experience has made me much less anxious about them.
I started off finger pricking for the first year and a bit and I think it can be helpful to learn to rely on that in the first instance, but I also understand that from a DSN's point of view, being able to access Libre data makes it much easier to see what is going on in those initial days and weeks than looking at a limited number of snapshot finger prick readings.

I sleep with my Libre under my pillow. I used to wake up through the night and scan frequently when I first got it but you eventually become more relaxed about it. I have the Libre 1 which doesn't have the alarms and to be honest I am quite happy about that now because I have learned to trust my body and I don't want to be awakened by alarms going off in the night, possibly unnecessarily, which can happen with Libre 2. I have confidence in my body to wake me when levels drop too low and I have confidence in my ability to manage my diabetes pretty well and those 2 things mean that I sleep very well these days, but if I do wake up hypo, I take my treatment and go back to sleep. I will have been diagnosed 3 years in Feb and I have felt confident like this for at least a year.

The DAFNE course was a big help to me in understanding my diabetes better and giving me confidence to adjust my basal insulin doses particularly. I learned a lot from this forum in advance of the course, so I went into the course with probably a lot more knowledge than most of the others even though some had been diagnosed a lot longer, but I think it gave me a structured approach which I then adapted to my own strategy of managing my diabetes and that gave me confidence in my decision making. I don't necessarily follow DAFNE rules and in fact I often break them but that is because I now know what works for me and the key thing with good diabetes management is being your own expert.

All I can say is that it is normal to be anxious and it is normal to be a bit obsessive about Libre particularly in the early weeks but you will get over it and learn to use it wisely, but if you feel you need a break from it, that is also important. It was one of the things that I discussed with my consultant when I first got it prescribed .... that I could take a break from it as and when I needed to. I will confess that I feel quite vulnerable going to bed without it for the first couple of nights but after that I am OK.

Time and experience is the key to it all and there are no short cuts to that.
.

Hello,
Thanks for your information. It’s good to know you feel confident with hypos during the night and day and how to sort them. I think like you said thinking about it sounds worse than reality but I haven’t had one yet to know!
Yes the alarms have the pros and cons to be honest as I find it goes off for low and I finger prick and it isn’t low and I don’t feel any symptoms. But again it’s good for during the night when I eventually sleep properly!
I’d quite like to do the DAFNE course but I told it’s a massive waiting list so will be a few years before I can do it which is annoying! These things should be online by now.
Yeh hopefully time will help, as I keep forgetting it’s only been two weeks!