DAFNE week & Levemir help please

[lauraw1983]

Ok where do I start? I need all you guys help!

I am half way through DAFNE today and to be honest this week I am exhausted with it all. It's like being newly diagnosed again and I am having terrible BG readings. I am not happy about that one bit.

Previous to DAFNE I was on 13u Lantus at 10.30pm and a 1:7 carb ratio for other meals. Most of my readings were good, my only problem has always been the morning readings I get - always high, and always needed Humalog corrections with breakfast. When I did 3am checks with Lantus it was steady but had still risen by the time I was going to eat breakfast.

This week- well first of all I am not keen on the "carbohydrate portions" they try to break all foods down into - I just do not think it is as accurate a way of doing things and they suggested everyone started at a 1:10 ratio (although DAFNE calls it a 1:1 as 1CP is 10g carbs)

I hesitantly went to 1:10 ratio because I do think my background was not right and something needed changed. My levels are awful and it's making me anxious, upset and p****d off.

Yesterday I got switched to Levemir, which I had been asking about for a while. The DSN suggested I split it 10u at 10.30pm and 4u at 12.30 the next day. She said it doesn't matter when I choose to take it as long as I leave 8 hours between it from the 10.30pm dose?

Last night I had a snack at 9.30pm and took 4.5u to cover the 45g carbs (they say snacks should be a 1:10 ratio at all times?!)

At 11.30pm by BG was 16.2. I am not happy going to bed with that so I took a 3u correction (1u drops me by 2mmol/l) I had taken the first dose of Levemir at 10.30 last night.

At 2.00am I woke up having a horrible hypo. It has really shaken me up - my first one at night, and it was just awful.

I had a mini can of coke and 4 jelly babies - I know probably too much but I panicked, and I could also have eaten a scabby horse tbh 🙄

My BG at 7.00am this morning was 12.0 and by the time I at breakfast at 8.30am had risen to 14.2.

All day it has sat around 13/14mmol that's with me using a 1:1.5 ratio (which is roughly what my 1:7 was before)

I hate it being so high, it has never been like that since diagnosis and I thought DAFNE improved things!! I can absolutely see the benefits of it in some aspects but my BG has never been like this and I just wondered, if you have managed to read this far, could you guys on here please tell me what you would do or have done with regards to Levemir?

I am very confused about the splitting of it - should the timings not be 12 hours apart and equal doses? My DSN is saying so, I possibly need more in evenings to deal with these morning rises I have?

I would appreciate any replies or advice so much, I feel like I have NO idea what I am doing now with it all and did end up crying today in the middle o f the course about the hypo too as it frightened me a lot.

 

[lauraw1983]

And I am off to pick up my kids now, but I will log back on tonight when I can - I have had trouble finding any time this week to read posts properly and reply but will do later. I appreciate any help, I'm sorry my post is so long but it's really confusing me now!

 

[PattiEvans]

Hi Lauraw

I just wanted you reassure you that you won't be the first to have these problems on DAFNE. Someone I know had very similar problems (mind you without a change to Levemir thrown into the mix). She had been working on ratios of 1u insulin to 5u carb and was made to reduce her lantus AND her ratios. It made her very ill with BGs in the high 20s. They do seem a bit inflexible.

I am on Levemir and it's wonderfully forgiving as to when you take it. I take mine at bedtime and breakfast time, doesn't matter when bedtime or breakfast time is. I take slightly less in the morning than in the evening

 

[Abi]

I think they're a bit too fond of simplifying things and doing the "normal eating" bit in DAFNE rather than pursuit of excellent control. In all fairness I think it's more helpful for people who are really in the dark and perhaps have hid their heads in the sand and not tried to attain much control on their own. A lot of it seems to be aimed at relieving guilt about blood glucose levels and food- which in itself is a good thing- many people are under a huge psychological burden and blamed for not achieving excellent control and sticking to outdated dietary advice- but in itself not much help towards getting those levels and A1cs down
I think the shorter gap between evening and morning levemir is to try to combat your dawn phenomenon- having the levemir at it's most active on wakening
As far as dosing and ratios go when `i did the course - over 5 years ago now- they told us to start with a 1:10 but I stuck with my 1.5 per 10 g for breakfast and pm meal as I was already carb counting and this seemed to work at the time- they seemed to trust me and respect this but it might be at least in part as I am a health care professional. Wrong really if the patient knows what they are doing and their current doses are not sending them hypo
They also drastically cut some peoples basal doses. A couple were on lantus >30 units but the text book states should be approximately 24 units per day. At the end of the course they acknowledged these doses should have been left alone and said they would send in feedback regarding what had happened

It's fairly common for people to need more levemir than lantus- I still think it could be a better solution if you have DP but as soon as DAFNE ends probably a good idea to do some fasting tests and then up those ratios if needed

 

[Clarkey]

Ok where do I start? I need all you guys help!

I am half way through DAFNE today and to be honest this week I am exhausted with it all. It's like being newly diagnosed again and I am having terrible BG readings. I am not happy about that one bit.

I was on DAFNE last week and my readings since then have been going up a bit at lunch and dinner. Problem is though that to really see a pattern I need to have a weeks worth of readings which i don't have yet. I hope to identify a resolution by the end of the week for mine, but you can't expect changes over night. They advise you to change one thing at a time and test that so it can take days and weeks to get it right that suits you.

Last night I had a snack at 9.30pm and took 4.5u to cover the 45g carbs (they say snacks should be a 1:10 ratio at all times?!)

At 11.30pm by BG was 16.2. I am not happy going to bed with that so I took a 3u correction (1u drops me by 2mmol/l) I had taken the first dose of Levemir at 10.30 last night.

At 2.00am I woke up having a horrible hypo. It has really shaken me up - my first one at night, and it was just awful.

Well if you took 4.5u at 9:30pm and only left it 2 hours before taking 3u correction at bed then you are more than likely not letting that 4.5u insulin finish. The insulin will last longer than 2 hours and therefore your 16.2 BG was before that 4.5u had run out. I'm not surprised adding 3u on top of it caused a hypo.

I would appreciate any replies or advice so much, I feel like I have NO idea what I am doing now with it all and did end up crying today in the middle o f the course about the hypo too as it frightened me a lot.

I'm sorry it got you all upset on the course. They really are there to help. The way I found it best to get the most from the course was disregard what i did before the course and went along with what the trainers say and towards the end of the week after looking through all your readings they should hopefully improve. I take it they are going through all your readings each day?

 

[lauraw1983]

Hi Lauraw

I just wanted you reassure you that you won't be the first to have these problems on DAFNE. Someone I know had very similar problems (mind you without a change to Levemir thrown into the mix). She had been working on ratios of 1u insulin to 5u carb and was made to reduce her lantus AND her ratios. It made her very ill with BGs in the high 20s. They do seem a bit inflexible.

I am on Levemir and it's wonderfully forgiving as to when you take it. I take mine at bedtime and breakfast time, doesn't matter when bedtime or breakfast time is. I take slightly less in the morning than in the evening

Hmmmm glad I'm not the only one!

The ratios, IMO, are just not as accurate, I feel very much like it is "dumbed down" to make it simpler in one way though for me I find it harder converting things to their CP's first.

I'm glad Levemir is forgiving then....I do think I will need more than 14u though, time will tell on that.

I'll be doing a 3am test tonight.

 

[lauraw1983]

I think they're a bit too fond of simplifying things and doing the "normal eating" bit in DAFNE rather than pursuit of excellent control. In all fairness I think it's more helpful for people who are really in the dark and perhaps have hid their heads in the sand and not tried to attain much control on their own. A lot of it seems to be aimed at relieving guilt about blood glucose levels and food- which in itself is a good thing- many people are under a huge psychological burden and blamed for not achieving excellent control and sticking to outdated dietary advice- but in itself not much help towards getting those levels and A1cs down
I think the shorter gap between evening and morning levemir is to try to combat your dawn phenomenon- having the levemir at it's most active on wakening
As far as dosing and ratios go when `i did the course - over 5 years ago now- they told us to start with a 1:10 but I stuck with my 1.5 per 10 g for breakfast and pm meal as I was already carb counting and this seemed to work at the time- they seemed to trust me and respect this but it might be at least in part as I am a health care professional. Wrong really if the patient knows what they are doing and their current doses are not sending them hypo
They also drastically cut some peoples basal doses. A couple were on lantus >30 units but the text book states should be approximately 24 units per day. At the end of the course they acknowledged these doses should have been left alone and said they would send in feedback regarding what had happened

It's fairly common for people to need more levemir than lantus- I still think it could be a better solution if you have DP but as soon as DAFNE ends probably a good idea to do some fasting tests and then up those ratios if needed

The highlighted bit - absolutely what I have been thinking.

I wish I had never gone back to a 1:10 either because I feel it's just cause MORE problems. I can see their logic but for me it just doesn't make sense - I was already carb counting too! And I did nursing when I left school, and quite recently studied human biology, and have read a fair bit about diabetes since diagnosis and feel I have a fairly good understanding of it.

I'm sticking to my ratio of 1:7 tonight (plus I will need a correction as currently at 13.2 and will be eating at about 8pm I think - will check it again then before eating)

I am curious what my 3am reading will be....then my resulting morning reading with 10u Levemir tonight.

 

[lauraw1983]

I was on DAFNE last week and my readings since then have been going up a bit at lunch and dinner. Problem is though that to really see a pattern I need to have a weeks worth of readings which i don't have yet. I hope to identify a resolution by the end of the week for mine, but you can't expect changes over night. They advise you to change one thing at a time and test that so it can take days and weeks to get it right that suits you.

Well if you took 4.5u at 9:30pm and only left it 2 hours before taking 3u correction at bed then you are more than likely not letting that 4.5u insulin finish. The insulin will last longer than 2 hours and therefore your 16.2 BG was before that 4.5u had run out. I'm not surprised adding 3u on top of it caused a hypo.

I'm sorry it got you all upset on the course. They really are there to help. The way I found it best to get the most from the course was disregard what i did before the course and went along with what the trainers say and towards the end of the week after looking through all your readings they should hopefully improve. I take it they are going through all your readings each day?

Thank you - I am really enjoying the course but everything this morning just got to me! Yes we go through everyone's BG readings morning and last thing and we can all offer advice or thoughts and people decide their own plan for that day/night. The DSN and dietician are lovely.

Yes you are right about the QA in my system and of course at 2am I realised that! I got frightened/p*****d off of the 16.2 reading before bed, it was NEVER that before, and without thinking about the insulin still circulating (I don't often snack, especially at that time!) I wasn't happy going to bed with that reading hence the (over!) correction. I know that was my silly mistake, and I shall learn from it.

 

[lauraw1983]

And as an aside, my god, how utterly CRUD do night time hypos make you feel the next day!? Urgh.

 

[Clarkey]

Yes I hate night time hypos. I think it's the sudden waking up and realising it that gets to you.

 

[lauraw1983]

Yes I hate night time hypos. I think it's the sudden waking up and realising it that gets to you.

It's my first one! Yeah that and the sweat LASHING off me. Horrid horrid horrid. 😡

 

[everydayupsanddowns]

Hi Laura

Sorry to hear you've been struggling.

Not done DAFNE myself, but I've also heard of people being *made* to switch to flat 1:10 ratios even when they know from experience that this is unlikely to be right.

I suppose the DAFNE tutors don't want to inherit any mistakes (people's basal being wildly high and meal ratios low as a result) so they just insist on starting everyone on a level playing field.

As far as I understand it ratios can be tweaked after a while (when you've done that bit of the course I suppose!), but it must be very frustrating in the meantime.

The other thing is that you've changed several things at once. If I'd just switched my basal insulin I'd be wanting to run some basal tests to see how it was working and get the dose(s) right before messing with insulin:carb ratios - but you've been made to change everything at once, which males identifying the problem quite tricky.

Incdentally, when I was considering a pump my other option was to try Levemir. The pump won, but I was wanting to try Lev so that I could have 2 doses (one for night, the other for day) and have them different to avoid dips into hypo at 3am, but have more basal running after breakfast.

This is much easier to achieve on a pump, of course, but your doses of Lev certainly don't need to be the same as I understand it.

 

[Otenba]

Have you tried speaking to other DAFNE graduates on the dedicated graduates site? They're a helpful lot plus you can post up your results through the diary feature. Link here: http://www.dafneonline.co.uk/

Considering you're only half way through the course, you're hardly giving yourself a chance to use what you're learning - working out your body's needs will not happen overnight. Just look for patterns and the good levels will eventually appear as you make adjustments based on what your body is telling you. This will take time. All DAFNE does is take many years of research and put it into a nice week course for you to use to work out your very personal body puzzle.

Sadly, everyone's needs are different and even after doing the course you're likely to find that you will need to make adjustments to suit your individual needs - do not generalise with your health. I know I certainly have learnt a lot from doing DAFNE. I started 1:1 across all meals and on Lantus... now I'm 0.5:1 (I use a half unit humalog pen to accommodate this since being on DAFNE) across all meals and on split dose levemir because my body is sensitive to insulin. It's thanks to DAFNE that I was even able to identify problem areas - like lantus running out for me in the middle of the day as well as my insulin sensitivity.

Try not to give up and certainly be patient with yourself. You will get there if you put the work in and if the other graduates are there if you need more help. Best wishes.

Edit: Also - I take 0.5:1 for snacks as well - it is fine to assume that snacks are 0.5:1 if most of your meals are that ratio. Don't be afraid to adjust a ratio if it is not working.

 

[grainger]

Hey hun,
I don't really have advise I just wanted to say keep going, try not to get down and I'm sending virtual hugs. The 3am checks must be making you tired too so I hope things all start to settle down soon.
xx

 

[lauraw1983]

Hi Laura

Sorry to hear you've been struggling.

Not done DAFNE myself, but I've also heard of people being *made* to switch to flat 1:10 ratios even when they know from experience that this is unlikely to be right.

I suppose the DAFNE tutors don't want to inherit any mistakes (people's basal being wildly high and meal ratios low as a result) so they just insist on starting everyone on a level playing field.

As far as I understand it ratios can be tweaked after a while (when you've done that bit of the course I suppose!), but it must be very frustrating in the meantime.

The other thing is that you've changed several things at once. If I'd just switched my basal insulin I'd be wanting to run some basal tests to see how it was working and get the dose(s) right before messing with insulin:carb ratios - but you've been made to change everything at once, which males identifying the problem quite tricky.

Incdentally, when I was considering a pump my other option was to try Levemir. The pump won, but I was wanting to try Lev so that I could have 2 doses (one for night, the other for day) and have them different to avoid dips into hypo at 3am, but have more basal running after breakfast.

This is much easier to achieve on a pump, of course, but your doses of Lev certainly don't need to be the same as I understand it.

I haven't actually changed much at once going by their "rules". The changes have been made days apart -the biggest change was them moving my ratio back to 1:10 which I said on Monday I wasn't keen on but I went with for them....

The Levemir first dose was just last night, 24 hours ago.

Basically I am doing DAFNE because here it's another tick box for my pump assessment....and once assessed if I am accepted for that then at the moment it's a 3-3.5 year waiting list(!!)

I'm hoping to get on that list before the end of this year and then take it from there. In the meantime I am hoping to get better results using Levemir than Lantus and I always suspected my Basal was the one that wasn't right.

My HBA1C before DAFNE was 6.8% or 51mmol. Everyone else (bar a pregnant lady who is 5.7% for obvious reasons) is in the 9.x or 10.x mmol category.....mine was good but I think if I could tackle the morning higher readings I'd manage to get it nearer to the lower 6's which is where *I* am happy with it.

 

[lauraw1983]

Hey hun,
I don't really have advise I just wanted to say keep going, try not to get down and I'm sending virtual hugs. The 3am checks must be making you tired too so I hope things all start to settle down soon.
xx

Thank you! I will reply to you on FB as soon as I get a second -this week is very full on for me and I am running about all over the place between the hospital, the kids, OH's shifts! And yes the 3am testing! xxx

 

[lauraw1983]

Have you tried speaking to other DAFNE graduates on the dedicated graduates site? They're a helpful lot plus you can post up your results through the diary feature. Link here: http://www.dafneonline.co.uk/

Considering you're only half way through the course, you're hardly giving yourself a chance to use what you're learning - working out your body's needs will not happen overnight. Just look for patterns and the good levels will eventually appear as you make adjustments based on what your body is telling you. This will take time. All DAFNE does is take many years of research and put it into a nice week course for you to use to work out your very personal body puzzle.

Sadly, everyone's needs are different and even after doing the course you're likely to find that you will need to make adjustments to suit your individual needs - do not generalise with your health. I know I certainly have learnt a lot from doing DAFNE. I started 1:1 across all meals and on Lantus... now I'm 0.5:1 (I use a half unit humalog pen to accommodate this since being on DAFNE) across all meals and on split dose levemir because my body is sensitive to insulin. It's thanks to DAFNE that I was even able to identify problem areas - like lantus running out for me in the middle of the day as well as my insulin sensitivity.

Try not to give up and certainly be patient with yourself. You will get there if you put the work in and if the other graduates are there if you need more help. Best wishes.

Edit: Also - I take 0.5:1 for snacks as well - it is fine to assume that snacks are 0.5:1 if most of your meals are that ratio. Don't be afraid to adjust a ratio if it is not working.

Only today we got the DAFNE graduate log in so I will look at that tomorrow night hopefully.

I am very guilty of wanting everything done yesterday and expecting good results right away - I realise it's not the case though, but know it's a fault of mine! I said the same to the DSN today lol.

It really is the worst condition I could have got as a control freak 🙄😉

I got half unit pens yesterday too for my humalog, another thing I'd been wanting.

Lantus was running out for me between lunch and dinner time too.

I questioned the snack ratio today and the dietician says they always suggest 1:1 for snacks but I am afraid I still fail to see their logic.....! 😱

 

[novorapidboi26]

I think almost everyone will experience dodgy blood sugars when starting DAFNE, as they break it down and start from scratch in order to help drum in the DAFNE principals, so just hang in there, its only a temporary bump in the road, you should come out of it with all the tools you need to fine tune your insulin dosing........

I think the 1:10 or 1:1 is just a standard across the country.....

10g for adults, 15g for children, it might be out of date, but in my experience its the easiest way to do it with DAFNE, at least until you get more confident.....

I never knew anything apart from 1:10 so your 1:7 is strange to me.....

I assume that means that 1 unit of QA deals with 7g of carbs......?

I can imagine this would get challenging mathematically for some when counting there carbs, in that is easier to divide by 10 than it is by 7, when your converting CHO into Carb Portions (CP)....

As far as the snack ratios go I agree that it shouldn't be 1:1 across the board, but you will start to understand that more as time goes on....

I use the Freestyle InsulinX meter which offers a dose of insulin by taking account of your current BG, insulin/carb ratio at that time and on boars insulin, so the meter will use the insulin/carb ratio for that time of day, which for me is never 1:1........what it will do is take into account on board insulin....

I think there logic behind it is they want to prevent insulin 'stacking' effects, where in theory, two or more doses and therefore 2 or more peaks can have a cumulative effect and cause hypo, but for most of us, or me anyway, snacking will be avoided the majority of the time in order to keep the next BG reading free from contamination.....😉

I left DAFNE with the tools to help myself but its taken till now, nearly 3 years later to fine tune it, and its still not perfect........

Hence the pump, which should be with me at the start of next year at the latest.....

Keep fighting.......🙂

 

[sofaraway]

I questioned the snack ratio today and the dietician says they always suggest 1:1 for snacks but I am afraid I still fail to see their logic.....! 😱

Haven't posted for a long time but I couldn't not post in response to this. For snacks you should use the ratio of the meal you are closest to.

If you are on 2:1 at lunch and 1.5:1 at evening meal and you have a snack at 5pm then you would go with the 1.5:1

Would make no sense if someone was on higher ratios ie. 3:1 all the time and then had to revert to 1:1 for snacks.

 

[lauraw1983]

Haven't posted for a long time but I couldn't not post in response to this. For snacks you should use the ratio of the meal you are closest to.

If you are on 2:1 at lunch and 1.5:1 at evening meal and you have a snack at 5pm then you would go with the 1.5:1

Would make no sense if someone was on higher ratios ie. 3:1 all the time and then had to revert to 1:1 for snacks.

That's exactly what I said!! They said no though.... 1:1 ratio :-/