Levemir issues

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MelissaF DAFNE Graduate
South West Essex PCT
56 posts

Thanks Marke - that makes sense. I'll try and get that code.

JayBee DAFNE Graduate
James Paget University Hospitals NHS Foundation Trust
587 posts

I'd might as well post considering I'm going through the same - or at least similar issues - with levemir.

I was originally on Lantus and for quite a long time I had no idea that Lantus was only working about 16 hours for me. It was thanks to DAFNE that I was able to identify this at all.... so whatever way I look at it, I'm going to be having a split dose for my BI.

After a lot of hassle with Lantus after that discovery, I moved over to Levemir which is designed to be a split dose insulin. I was so enthusiastic about it because I thought it wouldn't take me long to get my doses on track.

Unfortunately it hasn't been a quick process. Even now, I'm still working it all out - especially when the exercise or the time of the month messes it all up. The irregular patterns dominate my control as well - but I'm not going to give up.

MelissaF DAFNE Graduate
South West Essex PCT
56 posts

Hi,

Thanks for your post. I've looked back over the Lantus results that I've kept before starting on the Levemir (only about a week's worth unfortunately) and I'm not sure that I did have a problen with the length of time that it was working for. My evening results were more or less fine and those would have been the ones affected wouldn't they (I took the Lantus dose before bed)? Can anyone else advise?

I just find the split dose really hard to manage and it just doesn't seem to be working for me. I've been on it for 5 months now and it's not getting any better. In fact, in most ways, it's getting worse. How long have you been using it for? How did you find out that Lantus was only working for 16 hours? Was it messing up your readings at the end of the 24 hour period?

When you say irregular patterns? Can you tell me more about that? I find that, even applying DAFNE principles, my results are really unpredictable and often don't seem to make any sense so it is hard to find patterns to alter doses.

Have you been given any useful advice by your DAFNE team?

I'm stressed by it all because I'm trying to regulate my control to try for another baby and I can't get it good enough. It's taking so long. My instinct just tells me to go back to Lantus again.

JayBee DAFNE Graduate
James Paget University Hospitals NHS Foundation Trust
587 posts

I will aim to answer fully when Im next at a computer and not at work. Shall post my results even though I have been in contact with my nurse. I ran out of time on my first post so pardon the lack of info. I was on lantus years before I did DAFNE so that is a few years before March 2009. All that time I assumed that Lantus was working 24hrs and the highs were a result of guessworking everything I ate. DAFNE has been a godsend and with all the constant adjusting I used to do in response to any highs, Im amazed Im not dead. That was a hard habit to break. Applying basic DAFNE rules with pattern spotting and actually giving my body a chance to respond - sometimes it can take more than one day (an example already raised is about hypos on this thread - do not correct or you will hypo again - leaue it for 24hrs). We know its frustrating but if you over respond, patterns will be harder to see. Shall post later when Im not on a mobile. XD

MelissaF DAFNE Graduate
South West Essex PCT
56 posts

Hi again,

Thanks for this. Did you find that your highs on the Lantus were mostly in the evenings? Would that tell you that your Lantus was running out (presuming that you used to give your Lantus dose at night)?

I've been reading other information and I've found other people saying that switching to Levemir gave them very unpredictable results, especially first thing in the morning and at night which is exactly the problem that I've been having. It appears that this might be a recognised problem with Levemir but I can't work out why. I'm really heading towards just going back on the Lantus again but I'm trying to get all my information together before I make the decision.

I'm very bad at over-correcting as well. I think that DAFNE may have made that worse with me in a way although in most respects it's been great.

MelissaF DAFNE Graduate
South West Essex PCT
56 posts

Sorry, just read your posts again. Does that mean that you've been on Levemir since March 2009 or was that when you did the DAFNE course?

JayBee DAFNE Graduate
James Paget University Hospitals NHS Foundation Trust
587 posts

Shall warn you now - this is a massive post! XD I shall try to break it up into sections....

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March 2009 was when I did the course. I can't remember for the life of me when I started Lantus I just know it had been quite a few years before. I changed to Levemir in August 2010... so I've not been on it long.

My change over to Lantus wasn't pleasant because I was on Humalin I and I was taking quite a lot at that time. When I changed over and kept the same dosage amount, for a few mornings I wasn't waking up in the morning because my BGs had dropped very badly. Did eventually get things on a reasonable track but it was hard going with a lot of my control being confusing. However I more blame the fact I was in a cloud about my control - eg, no carb counting or anything - that allowed me to struggle, though things were still frustrating once I did DAFNE... but the stuff I have learnt as I've gone along has been valuable to me.

With Levemir, it's been the opposite. A lot more highs but I think this is just because of how my body is using it - it is not as 'strong' as Lantus when it comes to sugar levels but heck, keep working at the patterns and I'm sure I'll eventually work out how much Levemir my body needs in comparison!

For the record, I've been diabetic for 20 years - turned when I was 5 years old. Smile

Before DAFNE, my monthly hospital test was excellent but I knew I was over correcting - whenever I remotely hit a high (11 or above), I would inject and the boomeranging would go on and on. It reached a point where I said I couldn't take it any more - I was often feeling rubbish and drained of energy (because I technically was never stable with the boomeranging) and I felt all my food understanding didn't apply any more (the doctor joked that it was because I was now past 20 years of age - an old lady Razz).

This was when my doctor asked if I'd be interested in being one of the first groups in my area to do the DAFNE course.... and well, here I am today. It was funny really, a while before doing the course, he did try to teach me the basics of carb counting and QA ratios but bless 'em, they got the wrong end of the stick. That was very frustrating at first when I learnt about it at the course, but I laugh it off now.

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Anyway! Melissa! Enough about me for the moment! ^_^

Looking at your results that you posted back on page 1 of this thread, you do seem to have a lot of problems going on. I can relate very well to this because my nurse(s) have said that to me a lot in recent months, as well as my hard drilled old habits I used to exercise (the over correcting). It can be hard working out where to start with the problems but keep at it and be strong, you can do this (I know I hope I can LOL).

A few starter points to consider from what I can see:

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First Point: It is wise to stop the over corrections

(such as the adjusting around 10.30am before your insulin has finished working in the morning and any other of similar circumstance)

I use Humalog and I find it runs for about 5 hours (which I think is the average working time for this QA). You have to keep this in mind when sugar level watching. If you don't give it a chance to finish - you won't see what that dose and your BI does together alone. This was such a hard thing for me to stop, but I managed it. Be strong and you can do it too.

I know it's horrid to have the highs (boy I know it from the ketone spells I've had in the past two weeks because of my own personal puzzle) but keep working at it. Apply sick day rules if needed - they can be a saver. If you're not sure about that, please seek advice from your DAFNE nurse. I can understand how daunting it can be to inject 5% of your previous dosage total every 2 hours.


On the note of ketones, have you been checking your ketones? If they're not kept under control when you go over 13 BG, this can make it even harder for you to get back into a good range. Sad

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Second Point: Concentrate on resolving the hypos

(kind of is a part of First Point)

The hypos you had in the afternoon may be happening because of the over corrections - best to do a few days (or more if needed) where you stop the over correcting and see what patterns spring up. Remember, give your body the chance to use the insulin it has on board - it can take up to 5 hours depending on what insulin you take. Be patient, okay? Smile The afternoon hypos may disappear as a result of removing the over corrections! Good luck! Very Happy

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Third Point: Don't be afraid to have a CP free meal

They're not always fun, but heck, they can be worth it. Omelettes, salads, homemade soup (because shop ones seem non-existent)... eat a CP free meal before a time where there's issues. I've often found that it's better to not correct when doing this because it can distort the pattern. If you're worried about highs, keep in mind that highs over a small period are not as harmful as highs for an extended period of time (eg, years).

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Fourth Point: Use your DAFNE team!

Get in contact with the people who ran your course and see if you can set up either an email or phone contact with them. I usually email mine but I have phone numbers just in case.

If you are particularly worried about child bearing amongst everything - as well as any exercise planning problems - you are really best to contact your team.

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For the comparison with me... (just to clarify, I've not had any kids!)

These are my BGs from last week (latest first, and reverse order on each day - this is just how my blood machine puts the data down in the computer - dates are in american so month is first on dates):

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Date Time Blood / Ketones / Insulin taken in Response to Ketones

11/14/2010 16:01:43 15.32 / + / +2 (yesterday's total came to 36 - took 3 has a hypo preventive measure)
11/14/2010 15:24:56 14.71 / T / +1
11/14/2010 12:47:32 17.15
11/14/2010 08:29:06 19.21
11/14/2010 07:38:48 14.76
11/14/2010 03:14:26 12.04

11/13/2010 21:05:08 3.83
11/13/2010 18:01:57 10.71
11/13/2010 15:04:21 15.43 / ++ / +4 (yesterday's total came to 42)
11/13/2010 14:04:16 13.15
11/13/2010 07:33:00 14.1

11/12/2010 23:04:22 21.65
11/12/2010 22:35:06 20.09
11/12/2010 19:05:09 12.04
11/12/2010 13:08:24 11.49
11/12/2010 07:03:13 13.93

11/11/2010 21:52:19 13.43
11/11/2010 20:38:24 8.71
11/11/2010 18:39:53 7.6
11/11/2010 18:14:53 7.33
11/11/2010 17:44:55 7.6
11/11/2010 16:11:24 3.55
11/11/2010 13:10:35 10.66
11/11/2010 06:39:09 14.88
11/11/2010 03:04:37 13.77

11/10/2010 22:16:27 7.66
11/10/2010 21:16:45 9.6
11/10/2010 19:05:55 3.61
11/10/2010 17:31:41 4.22
11/10/2010 12:10:29 10.16
11/10/2010 06:30:59 19.32

11/09/2010 22:30:30 5.83
11/09/2010 21:46:36 3.66
11/09/2010 18:37:03 5.05
11/09/2010 15:43:24 3.11
11/09/2010 13:07:53 7.99
11/09/2010 10:57:18 2.83
11/09/2010 07:10:53 16.32

11/08/2010 21:22:50 5.22
11/08/2010 20:04:00 3.33
11/08/2010 19:05:30 6.11
11/08/2010 15:04:54 2.89
11/08/2010 13:10:13 11.49
11/08/2010 10:27:01 3.16
11/08/2010 06:59:32 8.94
11/08/2010 03:04:24 12.16


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As you can see, my sugar levels are frustrating too! XD Earlier on, I'm taking less yet hypoing - yet later I'm taking more in places and being high! Madness! Hormones mixed in too! >_<

I start with Morning BI (taken at around 7am - depends when I wake up sometimes regardless of my alarm(!)) of 10 and Evening BI (taken at 9pm - again, use my phone alarm) of 7... and at the end of the week it's Morning 8 and Evening 9. Having these times allows me to have an morning over lap because I find I need more insulin in the morning than the afternoon. Do not assume that this may be the case for you - try the 12 hour markers as others have suggested and see how you get on.

At start the Ratios go: 1:1, 1:1.5 and 1:1 .... at the end they're all 1:1.

Remember: trying to do too much at once is a hindrance to your health. ;)

The words I added in the email to my DAFNE nurse are here (just in case you're not aware, your time of the month can make your levels rise too - have you noticed? This is something I'm still working out, hence it's mention at the start):

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I appreciated the chat the other week but for some reason since my period calmed down, I have managed to get back down the path of regular hypos and ketone problems again. Just to touch on it, looking at my book, there doesn't appear to be any particular pattern when it comes to my period which is disappointing. I had spells of going only has high as 10 and other times 14 and the hypos started making an appearance on the 8 Nov 2010, 4 days after the expected 'high time'.

I have no guess work on record and so I feel 100% on my carb counting.
I have always been under the impression that hypos are valid one day changes to prevent them happening any more - though I know I sometimes forget this.

It began on Mon 8th Nov 2010 with a spell of regular hypos after every meal and so I responded to this after two days of the same results by putting my background down during the day (the morning injection from 10 to 9). My waking blood was still high at this point as we recognised this when we had our chat - I felt this would have to wait now this had started happening.

On Weds 10 Nov 2010, in the morning I was still high and as the day went on, I hypo'd around 17.05 which is outside the lunchtime meal working time. Based on the fact I was still hypo-ing, I decided from this that I would be best to put my morning background down again by one unit - from 9 to 8.

On Thurs 11th Nov 2010, still consistently high but I hypo'd around 16.10 ... this lead me to make the decision to put my lunchtime ratio back down because that was the main one working at the time that hypo occurred.

On Fri 12th Nov 2010, I was hitting very high numbers - particularly in the evening before the evening BI was done. I had no ketones.

On Sat 13th Nov 2010, the ketones starting appearing. In the morning, I didn't feel like eating anything so I just took +2 QA. Ketones were ++ around 15.04 despite further adjustments after being 13.2 at lunchtime. I applied the sick day rules as they are in the book; this resulted in quick recovery and a hypo at 21.05. With the very regular highs in the morning, I put my evening BI injection up again from 8 to 9.

On Sunday (today) I woke up as the usual high (14.Cool - no hypo during the night (12). Had breakfast and morning BI - didn't do any adjustments because of hypo yesterday. Before bike assessment at 8.29, was 19.2 (assumed caused by food). After got home again and lunchtime: 17.2 - I almost adjusted here but I didn't. Had nothing but an omelette. Around 15.24, I was 14.7 with a trace of ketones... because of the trace, I took one unit.... and at 16.00, I was heading up clearly with a blood of 15.3 and ketones of +. I have applied the sickday rules again, including the 1 unit from the 15.24 blood result and ketones.


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My sugar levels have started to show some improvement (I think!) this week but I'm not going to get comfortable yet... shall see how it goes.

Good luck with your habit breaking and level control! Keep in touch! Will be interesting to see what results you get after stopping the corrections! :3

JayBee DAFNE Graduate
James Paget University Hospitals NHS Foundation Trust
587 posts

I've actually had a decent moment to get some bloods input into the database on this site so you can see things from the last few days after the results I posted in my long post a bit easier.

I currently plan to put my during day BI dose up by 1 or 2 after seeing what happens today (most likely 2 considering how high I regularly am and taking extra +2 of QA in most places).

The plan today is to do everything 1:1, do no meal time corrections and see what happens and then I'll apply the BI change tomorrow morning.

MelissaF DAFNE Graduate
South West Essex PCT
56 posts

Hi J,

Thank you so much for all of this. I really appreciate your help and feedback.

It's interesting that the Levemir seems to be having similar effects on you. I did a bit more research on other websites yesterday (by Googling Lantus/Levemir comparison) and, although there were plenty of people for whom Levemir was working well, I also found several posts from people saying that they'd been experiencing the same problems - unpredictability, lack of patterns and extreme highs and lows - particularly very high levels on waking. I'm just wondering if it works for a lot of people but not for some and I happen to be one of the some.

We've been using it for about the same amount of time (I started the Levemir in July 2010) and I think that 5 months is long enough to try something with no success to be honest. I've been diabetic for 22 years, so same as you again, although I didn't develop it until I was 15.

To be honest I don't find that the time of the month has too much effect on my levels but I had enormous problems during my pregnancy. I'm not sure whether the insulin resistance that you develop is caused by hormonal changes, weight gain, a combination of both or something completely different. If I am lucky enough to get pregnant again I can't for the life of me imagine being able to cope with it with the experiences that I'm having on the Levemir at the moment.

I have been in email contact with my DAFNE team but I've just changed to a new team so I haven't known them that long. Although they're very good about replying to my questions, their opinion is that I should keep trying with the Levemir and, unless someone can give me a really good reason why this is the best option for me, I'm beginnning to think that maybe I shouldn't.

JayBee DAFNE Graduate
James Paget University Hospitals NHS Foundation Trust
587 posts

Hiya M, ^_^

I've had quite an interesting day with my sugar levels today! Once I've replied, I will get them typed up and I'll post you them!

Considering it's also taken into consideration as a BI in the DAFNE book, I'm sure Levemir is a well established insulin. Smile I wouldn't be surprised if it's been around for longer than Lantus!

I put up for Lantus for years before changing, so I don't exactly share the same view when it comes to something like 5 months being a deadline for a decision. It can be difficult to work out a new insulin's doses, especially when old habits are involved - so it can take a long time to adjust.

It will be unpredictable because it's a different insulin - don't forget that. You need to work out the puzzle of Levemir.

I'm trying to think of some more suggetions here to help you get back on track.... I know... I'll quote a few things you've said...

My DAFNE educator told me that it gave me more flexibility which I guess it does as you have two different doses to play with but I just find that makes things more complicated.



These I can understand. It gets complicated when there's an over lap and there is times when I wonder if I should have put up both doses at the same time, but often my DAFNE team remind me that I need to do one change at a time. Once you understand where your over lap is - if you have one - you'll be able to work out what dose you need to adjust.

For example - if I was sitting on a high almost every day in the afternoon - it would either be my morning BI or possibly time for me to look at my lunch time ratio.

Once you've applied a change, unless you hypo, you should leave it a few days because you need to give your body time to adjust to the new dose.

I also need to clarify something (another quote):

I've been a DAFNE graduate for the last 3.5 years. I've found it really helpful and it definitely helped my HbA1cs initially. However, I now have a 2 year old and, since having him, I've found that my control has worsened a lot - I think simply because life is much more hectic than it used to be and I spend less time looking after myself.

I've been trying to get things back on track again and my DAFNE educator suggested that I switch from Lantus to Levemir for my BI.



What was the exact reason your educator gave you the original suggestion to go to Levemir? Why did you agree with this change at the time?

I was put on to Levemir because it an insulin that has been designed to be an split dose and I understand the benefits to a certain extend because (as I mentioned already) I feel it works at a different "strength" to Lantus. This does allow for more flexibility I think, but this is just my opinion based on my experiences with both insulins. I feel Levemir noticably gives me more freedom when it comes to adjusting my doses (yep, despite the annoying highs and lows!)

Also - How much strenuous exercise do you get now with your lil' boy? Do you plan for this exercise?

If you are running around like a loon with them, take into consideration that my may need to eat extra or if it's planned, look at taking off a unit or two (depending on your blood sugar levels - please see the DAFNE guidebook for what I mean) before you get going. Simply doing this can help stop hypos and keep your body stable.

You mention about weight gain - effective exercise planning and taking a few units off at a meal can help you exercise it off because not only do you work your muscles, but you don't have to eat extra CPs for the exercise! Smile

I found this hard to understand at first but when you exercise, your insulin is used much better and as a result, if you don't compensate for it, it results in hypos or even highs. So if you eat something, like 2 CPs because your bloods are around 5 or 6, before exercise, don't worry about the insulin - based on the DAFNE exercise rules, you should be a-okay afterwards!

Also, don't forget that exercise can affect your body for up to two hours afterwards - this was something else I didn't understand for some time as well - and I love exercise! Sad I often find that if I shoot up high after some exercise, my body responds quite quickly to insulin so it's best not to inject it until the exercise period is over... if you see karaway's post on this thread it roughly explains what happens and why you can potentially hypo if you inject after exercising! Smile


It's a shame I haven't a clue about having children and the affect it has. I understand your concern with getting things on track but remember you're not pregnant yet... I mean, you're not right? Look at one thing at a time... don't stress yourself out with worry with future possibilities, okay? I had similar worries with me learning how to drive currently - everything will be fine, just concentrate on the present for now. You can do this. Very Happy


Okay - Looking at your results that you posted on page 1 of this thread, let's try and break this down...
(I'm going to have to base it on my DAFNE stuff okay? Let's see how this looks!)


You tend to inject your evening BI between 10pm and 11pm. This is fair enough - an hour is a reasonable time frame in my books - I exercise this myself. (Based on my 16 hours) this may run out around 2pm - 3pm the next day.

You inject your morning BI between 7am and 9am - if possible, try to shrink this gap down because consistanty will help you. (Based on my 16 hours) this may run out anywhere between 11pm and 1am.

Looking that the BI stuff, as long as Levemir works between 13 - 18 hours, you're pretty much covered!

If you are worried that you might be at 12 hours, I would speak to your DAFNE team on how you can go about finding this out. I found out the hard way with Lantus (with it clearly letting me down in the afternoon after 2pm)... I'm still not 100% sure if Levemir does, but I've yet to see any major gaps to have any doubts.

Hmmm, I've just realised that you've made two consecutive changes to your BI and not given it a few days to see the full picture. Try not to do this if you make any more changes, mmkay?

Right, so meal ratios.... all are 1:1...

Hmmmm.... Why do you eat so long after you blood test? (The 11am and then eating with no blood test at 13.45)
Your sugar levels can potentially change in that time frame. This is why it's better to test before the meal.

I also see that on some of those days, you've been eating extra in the morning between break fast and lunch - how are you feeling when you do this? Feeling spells of hypo potential or just a genuine snack?

If it's snack - look at possibly going with out them for a week or two considering it means there is insulin still on board when it comes to your lunchtime - in other words, insulin that is distorting the patterns.

I'll leave it at this for now... how are you feeling about this feedback? Keep your chin up, M. Smile