Hi

[MichelleF78]

Guys thank you so much. I cannot thank you enough. I unfortunately suffer from the dawn phenomenon or feet on the floor syndrome. I was thinking of taking my insulin to bed and injecting when I wake but thought I was nuts! Here ia my libre picture today. I feel when I eat breakfast if I around 11-12 I go above 15 every time. I am just finding this all so tough. I feel it’s the worst thing that could happen to me! Also anyone libre alarms doesn’t work??

 

[MichelleF78]

Hi @MichelleF78

You mention that you go high as soon as you get up. This is quite common. You don’t need to wait until the correction for that is sorted if you want an earlier breakfast. Once you are carb counting, and know how to do corrections for higher or lower levels, you can add in the adjustment to your breakfast dose. It is quite common for us to need more insulin in the morning than later in the day. That could then give you a bigger gap between your breakfast and lunch if that is what you want. Eventually you will be able to eat whatever you want when you want and just match the insulin you inject to what you need.

Great that you have the option to change to FIASP. This has worked well for some and they have been able to reduce their pre-bolusing. Another faster acting insulin is Lyumjev, so that could be another option if FIASP doesn’t suit you.

It could be helpful if you have a look at the Bertie course on carb counting. I know it is frustrating in these early stages after diagnosis, but just take things a step at a time.

Thank you I have started the BERTIE course

 

[MichelleF78]

You've had a really helpful response from the excellent @rebrascora above, so I'll try to add to this a little bit

Firstly many of us on here who are T1 have come to it later in life. I was in my early 40s when I was diagnosed. It's a huge upset and a lot to get used to, it sucks actually and that needs saying! but it gets better as you get to grips with it. Diabetes or any long term condition is a marathon and you can wear yourself out trying to control it, but ultimately we do the best we can on any one day, take the wins, and accept some days will be a bit rubbish. Finding a way to manage things that works for you is, in my humble, the way forward with this.

1) if you do not already have a CGM, I suggest you get a free 14 day trial one from Libre in the meantime, but it should be available to you as a T1. As you'll see from other threads the key to libre/cgm in general is using it well as tool to see what your blood sugar is doing in between finger pricks/meals etc. This can give us a lot of information which helps make plans

2) You do not have to low carb. Some members enjoy this way of eating and find this useful, but it is not necessary if it does not work for you. Personally I find coconut flour to be the devils work, and would much rather have a piece of deliciously carb-laden cake from the bakery and bolus for it. Once things have settled a bit more and you are confident with your insulin, you can pretty much eat as you would have before T1. The carbs and cals book/app is useful in the beginning for carb counting (actually i no longer need my copy of the book, if you would like it, dm me your address and I will send it to you), but eventually you will get your eye in and be able to accurately guesstimate the carbs in anything on sight.

3) Hopefully fiasp helps you - I can see you've had good advice on the other thread. We can't advise on dosing, but keeping good records of timings and amounts of insulin, reviewing and looking for patterns/having a chat with your DSN should help. Insulin resistance is often highest in the morning due to something called 'dawn phenomenon' or 'foot on the floor' when the liver helpfully dumps glucose into the bloodstream and this can make breakfast more challenging to bolus for. From everything you've said you are doing really well, just be gentle with yourself as you are learning.

Hi I have a libre fitted and thank you for offer of book I already have it x

 

[MichelleF78]

Can you talk us through your morning routine with insulin, food and readings for this morning? Do you have Libre and if so, can you post a photo of this morning's graph?

Things like when you wake up, do you test and inject before you get out of bed or wait till you are up and washed and dressed?
Timing with insulin, both bolus and basal insulin, particularly Levemir, can make a big difference. Once you set foot out of bed, your liver may start pumping out glucose to give you energy for the day, so for me it really helps to get my basal and bolus insulin into me before my feet touch the ground. Obviously don't bolus your breakfast insulin if you are intending to eat out, but in the normal course of things, injecting it as early as possible has been really helpful for me. In fact I experimented with setting an alarm for an hour earlier to inject my morning Levemir to give it time to get going before I got up. That experiment lasted for a month or two before the novelty wore off 🙄 , but I always inject before I get out of bed. Even if I am not having any breakfast, I find that I still need 1.5-2 units of meal time insulin (Fiasp) to counteract the glucose released by my liver (Foot on the Floor Syndrome). You may be different, so you will need to experiment to see what works for you.

I am a grazer, so i is certainly possible to do this with a basal bolus regime and you don't need to leave 5 hours between meals, but in the early days of diagnosis when they are trying to figure out your basal needs and ratios and correction factors, it helps to stick to 3 meals a day, so there isn't anything happening between meals which will distort the results.

I think it is important to note that if you are waiting for your levels to come back down to your target of 7 before injecting your next bolus of NR and then eating your next meal, you may be misunderstanding. The target is the number you are aiming for in your calculations when you need a correction. You won't necessarily achieve the target because there are something like 42 factors which impact on BG levels and you don't have control over many of them, so what you are aiming for and what you achieve are often very different, but that shouldn't stop you from eating.

If you are within the 5 hours that NR is active then I would not advise you do another correction (even if you need to) , but there is no reason why you can't inject the insulin to balance your next meal and then eat it after your prebolus time or if you are very high, inject and wait for levels to come down to 7 before eating.

Hope that makes sense. If it doesn't, please ask and I will hopefully explain it better. In theory. You could have breakfast at 9am and then have a 20g carb snack at 11am and just inject however much insulin you need for 20g carbs and then have lunch at 1pm and inject however much you needed for lunch. However you would not calculate a correction for your levels being high at 11pm before the snack or 1pm before lunch because the NR you injected in between is still active. This is the same regardless of which insulin you use although for me Fiasp is usually finished working after about 3 hours. As I said, in the early days, you need to try to keep things simple so that your nurse can see what is going on more clearly.

As for DAFNE being hard work, I didn't find it so and really enjoyed it, but I had learned a lot from this forum before I went so I was probably more clued up than most. Whilst I don't "eat normally" as the course title suggests, it still provided me with some very useful knowledge and frameworks, which I can fall back on if/when my diabetes goes wonky, but mostly, it gave me confidence particularly with adjusting my Levemir doses, which has made a very significant difference to my diabetes management.

Hi and thank you for your time and advice. DAFNE course not until July. Here is my libre graph today. I get the dawn phenomenon unfortunately

 

[MichelleF78]

Can you talk us through your morning routine with insulin, food and readings for this morning? Do you have Libre and if so, can you post a photo of this morning's graph?

Things like when you wake up, do you test and inject before you get out of bed or wait till you are up and washed and dressed?
Timing with insulin, both bolus and basal insulin, particularly Levemir, can make a big difference. Once you set foot out of bed, your liver may start pumping out glucose to give you energy for the day, so for me it really helps to get my basal and bolus insulin into me before my feet touch the ground. Obviously don't bolus your breakfast insulin if you are intending to eat out, but in the normal course of things, injecting it as early as possible has been really helpful for me. In fact I experimented with setting an alarm for an hour earlier to inject my morning Levemir to give it time to get going before I got up. That experiment lasted for a month or two before the novelty wore off 🙄 , but I always inject before I get out of bed. Even if I am not having any breakfast, I find that I still need 1.5-2 units of meal time insulin (Fiasp) to counteract the glucose released by my liver (Foot on the Floor Syndrome). You may be different, so you will need to experiment to see what works for you.

I am a grazer, so i is certainly possible to do this with a basal bolus regime and you don't need to leave 5 hours between meals, but in the early days of diagnosis when they are trying to figure out your basal needs and ratios and correction factors, it helps to stick to 3 meals a day, so there isn't anything happening between meals which will distort the results.

I think it is important to note that if you are waiting for your levels to come back down to your target of 7 before injecting your next bolus of NR and then eating your next meal, you may be misunderstanding. The target is the number you are aiming for in your calculations when you need a correction. You won't necessarily achieve the target because there are something like 42 factors which impact on BG levels and you don't have control over many of them, so what you are aiming for and what you achieve are often very different, but that shouldn't stop you from eating.

If you are within the 5 hours that NR is active then I would not advise you do another correction (even if you need to) , but there is no reason why you can't inject the insulin to balance your next meal and then eat it after your prebolus time or if you are very high, inject and wait for levels to come down to 7 before eating.

Hope that makes sense. If it doesn't, please ask and I will hopefully explain it better. In theory. You could have breakfast at 9am and then have a 20g carb snack at 11am and just inject however much insulin you need for 20g carbs and then have lunch at 1pm and inject however much you needed for lunch. However you would not calculate a correction for your levels being high at 11pm before the snack or 1pm before lunch because the NR you injected in between is still active. This is the same regardless of which insulin you use although for me Fiasp is usually finished working after about 3 hours. As I said, in the early days, you need to try to keep things simple so that your nurse can see what is going on more clearly.

As for DAFNE being hard work, I didn't find it so and really enjoyed it, but I had learned a lot from this forum before I went so I was probably more clued up than most. Whilst I don't "eat normally" as the course title suggests, it still provided me with some very useful knowledge and frameworks, which I can fall back on if/when my diabetes goes wonky, but mostly, it gave me confidence particularly with adjusting my Levemir doses, which has made a very significant difference to my diabetes management.

Can I please ask how much Levemir you are on morning and night? I am going to take my insulin with me to bed and inject in the morning before I get up! Thank you x

 

[rebrascora]

I was thinking of taking my insulin to bed and injecting when I wake but thought I was nuts!

Why do you feel it is nuts?
I sleep with my insulin pens under my pillow along with my Libre reader and I reach for them as soon as I wake up or in the night if my alarm goes off and I am high. My insulin is what keeps me alive and my Libre guides me as to how much I need. They go everywhere with me along with Jelly babies and I feel vulnerable without them to be honest. My test kit is also in my bag next to the bedside table as back up and of course plenty of jelly babies and dextrose tablets on the bedside table.

 

[MichelleF78]

I am on 14 Levemir morning and 16 at night just now

 

[MichelleF78]

Why do you feel it is nuts?
I sleep with my insulin pens under my pillow along with my Libre reader and I reach for them as soon as I wake up or in the night if my alarm goes off and I am high. My insulin is what keeps me alive and my Libre guides me as to how much I need. They go everywhere with me along with Jelly babies and I feel vulnerable without them to be honest. My test kit is also in my bag next to the bedside table as back up and of course plenty of jelly babies and dextrose tablets on the bedside table.

My alarms do not work in libre. Tried everything to fix them to no avail. I am only 2 months in with this and no one has advised me to take insulin to bed or to inject before I get up.

 

[rebrascora]

I see our posts crossed and you are going to take your insulin to bed with you and inject first thing. I currently take 24 units of Levemir in the morning and 2 units at night. If I am doing a lot of physical activity over a number of consecutive days my evening dose goes down to 0 and my morning dose gets reduced gradually to about 20, but my evening dose has been as high as 7. I don't think I have managed on less than 20units of Levemir total for over a year. I am not doing enough exercise at the moment so even on 24, I am needing a few corrections with Fiasp during the day, so I must get out and "swing my legs" a bit more as that will bring my does down and make me feel better in lots of other ways too.

 

[rebrascora]

Are you using an Android phone? Since the last update several people have lost the alarms on their Libre. I believe Abbott are working on fixing the problem but there are a couple of options. You could contact Abbott and explain the situation and ask for a reader if whatever they suggest you do with your phone doesn't work or you can uninstall the last update to your phone and reinstall the previous one that apparently worked and change your phone so that it doesn't automatically update, otherwise you will be be back to square one. I think @Pattidevans may have a link to the process involved in uninstalling the update and going back to the previous one, if that is the issue, but it is important to ring Abbott and report the problem and follow whatever advice they offer and if that doesn't resolve it, insist they send you a reader.

 

[MichelleF78]

Thanks Barbara. No I have an iPhone 13 Pro Max and have followed the advice given but still no luck. This is the 4th sensor now and all the same. Alarms just don’t work. There’s been no update to the app since I downloaded last month, Last Saturday night I was at 2.9 all during night and didn’t know until I woke.

 

[rebrascora]

Thanks Barbara. No I have an iPhone 13 Pro Max and have followed the advice given but still no luck. This is the 4th sensor now and all the same. Alarms just don’t work. There’s been no update to the app since I downloaded last month, Last Saturday night I was at 2.9 all during night and didn’t know until I woke.

Are you aware that if you sleep on the arm with your sensor on it, it will give you what we call a compression low, so it is possible that your levels didn't actually drop and you weren't really hypo. Also Libre generally exaggerates a bit when we are low, so for me it might say I am 2.8 when I am actually 3.8, so even if you were hypo it probably wasn't as bad as that 2.9 suggests especially if it didn't wake you up, although we can be less hypo aware during sleep than when awake, I find I wake up, but often don't actually feel noticeably hypo. I suppose partly because it is dark and I can't notice any vision distortion when I can't see anything anyway and lying down means my legs don't feel like jelly etc. I can usually tell from my graph if it is a compression low, especially if I wake up on the side where my Libre is, but I have mostly taught myself not to lie on my Libre arm, so I very rarely get compression lows anymore. If your graph shows a sudden dip then it is more likely to be a compression low. Mine usually drifts down slowly and until recently I needed to rely on my body to wake me, but having the Libre 2 with alarms for the past 4 weeks has been great because it alarms at 4.2, I grab a jelly baby off the bedside table, chew it and go back to sleep within a minute. No need to put the light on and having the reader under my pillow means that it wakes me but not my partner. Same with the high alarm. I am now very adept at dialing up a unit or two in the dark and injecting it without putting the light on. I hate my sleep being disturbed so the minimum disruption possible suits me and my partner.

I also want to say that whilst I can understand you having an interest in what doses of insulin other people take, it is really important to understand that we are all very different and you have to find what works for you. There was a lady on my DAFNE course who only needed 2 units of basal insulin and another 3-4units of bolus insulin each day and she had been Type 1 for 50 years and regularly hypoed badly on that tiny dose during the night but her levels went sky high in the morning. The answer for her was an insulin pump. There are Type 2 diabetics who need more than 100units of basal a day plus a similar amount of bolus insulin or more. You need what you need, but you can often reduce the amount you need by increasing activity and losing weight, which is why I need to reduce my Levemir doses for a couple of days after exercise.

 

[MichelleF78]

Hi no was not aware of that issue with the arm either. I go from side to side to sleep usually. I have a feeling I’ll never get the hang of all this. You have it all sussed out

 

[rebrascora]

Hi no was not aware of that issue with the arm either. I go from side to side to sleep usually. I have a feeling I’ll never get the hang of all this. You have it all sussed out

Not totally. My diabetes still goes haywire occasionally. I have learned most of the information I know from others here on the forum and carefully experimenting on myself with one eye firmly on keeping myself safe. Whilst I have a partner, he has his own house so I live alone most of the time and I am very independent, so understanding how to keep myself safe has been an important aspect of my diagnosis to maintain my lifestyle with confidence.
Not saying there haven't been a few wobble moments at times, but getting through them has increased my confidence and having knowledge is power so I make sure I risk assess and plan and keep my life saving stuff close by at all times and then I don't need to worry about that. It just becomes a part of who I am.

I am 4 years down the line from diagnosis, so I can assure you that this didn't happen overnight and the first year was pretty turbulent, but I didn't have Libre then, which really helps you to see exactly what is happening and comparing notes with others enables you to make sense of it. I have only just upgraded to the Libre 2 last month so before that I didn't have any alarms and just relied on my body alerting me to hypos day or night. Up till now I averaged about 1 minor hypo per day or about 100 hypos every 3 months, sometimes more. That is probably more than a thousand hypos over my 4 years on insulin, which means I am really experienced at dealing with them, even if slightly less successful at preventing them🙄Despite that, my stats are still really good and I feel really confident about my diabetes management, which is the most important thing. The fear was really debilitating in the early days.... much more so than the hypos are, so in some respects having all those hypos has helped me to become so confident. I am however now enjoying heading them off at the pass with the aid of Libre 2 alarms. I really hope you are able to get that situation fixed with your phone. Unfortunately I am a tech dinosaur,and whilst I have a phone I use it almost exclusively for texts and phone calls, so the Libre reader has been a very trusty friend to me with my Libre and now Libre 2 and none of the problems that the phone updates have caused with loss of alarms.

 

[Bruce Stephens]

Not totally. My diabetes still goes haywire occasionally.

As it does for all of us, I'm sure.

 

[MichelleF78]

Well Barbara you have did amazing, be proud of yourself. I am terrified to over eat and I am pretty hungry most of the day. Anyway I’m taking my insulin to bed with me and I’m going to take them both before my feet goes in the floor. The Levemir does take a few hours to kick in though. But I’ll defo take my novo also before I get up. Just thinking I’ll stay naturally go up though when j so get up though? Help!!

 

[SB2015]

I am on 14 Levemir morning and 16 at night just now

It was a long time when on injections before I realised that the Basal needed to be given at a consistent time am and pm. I had just been told to do them ‘in the morning’ and ‘in the evening’.

I met another T1 who was saying he had broken a pen as he sat on it when it was in his back pocket. I asked why he didn’t wait till he got home to do hi jab. That was when he explained that it needed to be at a consistent time. That might be worth thinking about when you decide when to take the basal doses.

Don’t worry about how much others take. We are all different and you need what you need. This is likely to change over time and your course will teach you how to test the basal dose if you think you need to change it. Not something to worry about at this stage.

Keep the questions coming.

 

[MichelleF78]

It was a long time when on injections before I realised that the Basal needed to be given at a consistent time am and pm. I had just been told to do them ‘in the morning’ and ‘in the evening’.

I met another T1 who was saying he had broken a pen as he sat on it when it was in his back pocket. I asked why he didn’t wait till he got home to do hi jab. That was when he explained that it needed to be at a consistent time. That might be worth thinking about when you decide when to take the basal doses.

Don’t worry about how much others take. We are all different and you need what you need. This is likely to change over time and your course will teach you how to test the basal dose if you think you need to change it. Not something to worry about at this stage.

Keep the questions coming.

Thank you @SB2015. I’m an early riser and usually wake up around 6 ish. I am trying to do the 12 hour Levemir shots. Last night I went to bed at 7 and thought I was fine, and woke at 13.5. I have DP and FOTF. So hard to correct. You have all been so kind devoting your time. I’m only 2 months in and I just feel something isn’t right. Most meals I rise to at least 13-15.