Changing my levemir, any advice appreciated

[Angeldust]

Hi guys,
I'm pretty clued up and good at managing my own controls and can't see my doctor right now as I'm on a long trip to Canada.
I was previously on lantus and it was terrible for me. Last year I met a really nice lady in London who told me all about levemir and gave me some pens to try. It was the best thing I ever did. When I told my doctors they were actually impressed and switched my prescription right away.

It was working really well 24 hours at first but as of the last few months I am waking up hypo and high by the evening. I worked out it's lasting about 20 hours. The problem is I can't see a dr right now as I'm on a long trip to Canada, refuse to anyway as I was treated nothing short of an absolute disgrace when I was hopistilized twice for gastroparesis flareups and now have 100grand med bills hanging over my head (problems with my insurance company,sigh).

As of last night I decided to try dividing my dose equally in two, taking one at 10pm and the other 10am. I know I won't see the results for a few days but I think this is the wisest thing for me to do. I started this last night and my bg was normal when I woke. It's 10am here and I've just taken the second dose.
I know the problem is not my novorapid because I use the DAFNE method (single best thing I ever learned) and know exactly how much to take for whatever it is I consume. I don't eat all that much due to the gastroparesis. The delayed stomach emptying can also really screw with my levels sometimes but that's something I have to live with.

Any advice/experience on this levemir method would be indebted and very much appreciated.

Thanks,
Linda

 

[Daver]

Hi Linda,

I am on Novorapid and Levemir and also found that the Levemir didn't quite last the 24hours. My diabetic nurse suggested doing exactly what you have done by splitting it into 2 doses and so far - no further issues. I actually take 8 units at 9:30pm and 7 at 9:30am. I don't have a half dose pen at the mo but this seems to work fine for me.

The nurse does rate Levemir highly but has found a few people who experience the same ups and downs as us and by splitting the dose has ironed out the problem.

I'm sorry I can't offer any advice on the insurance company but wish you luck with that too.

Hope this helps

Best regards

Dave

 

[Angeldust]

Thanks very much for your response Dave.
Glad to hear it's had results for you.

The weird thing is I'm on a huge dose compared to what other people here seem to be.
I was up to taking 36units and like I say, don't eat much. Maybe it's due to vomitting from gastroparesis that my body needs more but I'm really lost on this one.

Lower doses (in the 20s..) just don't cut it.
I split it 16 and 16 to start with because the hypos I was waking with were usually around 2.6. But then at night 13-16. And I know fact it's not the novorapid.

 

[janabelle]

Hi Angeldust,
Have you considered an animal long-acting insulin to replace Levemir? Worth noting that adverse-effects of analogue insulins include gastro/stomach probs
Jus

 

[Angeldust]

Hi Jus, thanks.
Yeah.. not for me. Sticking with the levemir..it works I don't want any more changes. Plus the thought of animal insulin makes me feel sick (!!)

Well...my levels have been high all day. I've taken two doses of novorapid, eaten pretty much nothing. Still
at 16.

Guess I have to give it a few days?
But I'm going to up the doses to 18.

 

[iHs]

Hi Linda

Levemir is a much nicer to use basal than Lantus and many diabetics find that their hypo awareness improves a bit through using it, so hang on with it for a while.

With regards to using it 12hrs apart and doing a straight 50/50 split, that will start you off but to put it to the test, the best way to find out how effective it is, is to see how much bolus insulin you need to use per 10g carb. If you find yourself needing to use 3 or 4 units bolus to 10g carb, then that will be a small indicator that you need to increase your basal up by about 1 unit at a time until you start to get a more normal ratio of Novorapid for the average adult. Many people in their attempt to get their bolus levels ok also start to manipulate their basal doses as well and start to do 60/40 splits or even odder (as I did). My basal dose Levemir was 14u morning (8am) and just 6u at 9.30pm. My insulin to carb ratios (Novorapid) was 1:4 br, 1:7 lunch, 1:4 eve meal. These ratios enabled me to get my bg level targets somewhere ok by testing bg every 2.5hrs and I was able to stay reasonably even all day although there were times when things went a bit belly up but that's life.

Although the above is all about Novorapid working ok with Levemir, I was wondering if you have considered asking to be put on a pump as you will be able to meet the NICE criteria due to your profession, eratic control of bg levels and also gastroparesis ?

 

[kewgirl]

Hi Linda

Levemir is considered to have a 30% less action than other basal insulin’s (be it Lantus or NPH (Isophane) insulin’s) so some users find they do have to increase the dose more.

Good evidence however there is more flexibility with Levemir – you can increase dose each day rather than waiting 3 days to see if it helps. Apparently the higher the dose ratio the steeper the peak action which can be useful to curb high BG times when of course you have figured out when that is :lol: :lol: .

Whilst many users split their dose equally I think realistically you need the flexibility of what works for you.
You mention your dose “I’m on a huge dose compared to what other people here seem to be”.
I always get extremely concerned that at times this forum feels like a competition to see how low a user can get their insulin doses.

Fact: Boffins & scientists can only really guestimate how much endogenous (as in produced within the body) a non- diabetic makes.
It is guestimated but also open to debate to be the equivalent of ½ to 1 unit per kilo of body weight in a 24 hour period. However with exogenous insulin (the stuff we inject) the doses can vary considerably.

Fact: there will always be insulin users on less insulin than you and insulin users on more insulin than you – my analogy is when you’re at the airport observing the luggage of travellers – you always think your luggage is huge until you go and check in :lol: :lol: :lol: :lol:.

My concern would only be when injected insulin doses are increasing and increasing and still BG control is not good because it’s potentially a time to consider a change of insulin and/or insulin pump.

Sorry for the pre amble – I just don’t want you to compare yourself with other Levemir users when it comes to doses. Other factors come into play which can include how long someone have been using insulin, how sensitive their body is to a particular type of insulin, whether they are still producing any exogenous insulin, what life style they have, what food choices are open to them and other health issues.

Having gastroparesis a real challenge for you as well & I wonder if your basal insulin is having to soak up some of the work the bolus would be doing in a diabetic without gastroparesis – hence your basal dose might be higher.

Also if you are finding it difficult to eat I suspect your body is liver dumping – I appreciate you have a challenging time.

I also have a theory regarding Lantus and what happens to some users when they change insulin – as we know Lantus has the habit of staying in its depot under the skin when injected and not doing anything.
As you mention that the Levemir appeared to be working well to begin with I would guess there was still Lantus depots in you – I went through what can only be described as a honey moon period (albeit 39 years late :lol: :lol: :lol: ) when I came off Lantus and went back on animal insulin – & I am convinced it was the Lantus depots that were dormant decided to work.
Hence once the Lantus has gone from you, your body was left with the Levemir and then you analysed and discovered Levemir only lasted in you 20 hours.
In fairness Levemir was never marketed as a 24 hour basal analogue it was marketed as a 1-2 a day injection basal.

Also your Levemir dose depends on your bolus/basal total daily dose (TDD) i.e. some users find a compete 50/50 split others prefer a 60/40 split or a 40/60 or a …..etc etc. its what works for you.

Are you feeling better off the Lantus though?

Hang in there - I would say its early days & when changing any insulin regime its not always a quick easy process.
I also concur with iHs regarding exploring the possible pump option.

Best wishes

Txx

 

[janabelle]

Hi Jus, thanks.
Yeah.. not for me. Sticking with the levemir..it works I don't want any more changes. Plus the thought of animal insulin makes me feel sick (!!)

LOL, know what you mean! The thought of it made me feel squeamish years ago, when I thought the Synthetic " human" insulin I was taking was a perfect copy and the best thing for me.
However you live, and you learn, and the truth is that many people are worse off, not better off for the introduction of analogue insulins. Not everyone, but a significant number have problems and side-effects which are rarely linked to their medication by the medical proffession. I completely appreciate your reluctance to change medication, but I urge you to keep an open mind regarding side-effects and individual adverse reactions, and best of luck.
Jus

 

[Angeldust]

Hi everyone,
thanks for your replies. Sorry I replied to this last week but my post isn't here for some reason.

Hi Linda

Although the above is all about Novorapid working ok with Levemir, I was wondering if you have considered asking to be put on a pump as you will be able to meet the NICE criteria due to your profession, eratic control of bg levels and also gastroparesis ?

My consultant back in London, GP and diabetologist in Scotland said a pump will have nothing but many benefits for me and none of them would hesitate for a moment about it being beneficial for me. I don't think I'd have the slightest battle getting one. I will definitely get back on this as soon as I get back to the UK.

Hi Linda



Having gastroparesis a real challenge for you as well & I wonder if your basal insulin is having to soak up some of the work the bolus would be doing in a diabetic without gastroparesis – hence your basal dose might be higher.

Also if you are finding it difficult to eat I suspect your body is liver dumping – I appreciate you have a challenging time.

I also have a theory regarding Lantus and what happens to some users when they change insulin – as we know Lantus has the habit of staying in its depot under the skin when injected and not doing anything.
As you mention that the Levemir appeared to be working well to begin with I would guess there was still Lantus depots in you – I went through what can only be described as a honey moon period (albeit 39 years late :lol: :lol: :lol: ) when I came off Lantus and went back on animal insulin – & I am convinced it was the Lantus depots that were dormant decided to work.
Hence once the Lantus has gone from you, your body was left with the Levemir and then you analysed and discovered Levemir only lasted in you 20 hours.
In fairness Levemir was never marketed as a 24 hour basal analogue it was marketed as a 1-2 a day injection basal.

Also your Levemir dose depends on your bolus/basal total daily dose (TDD) i.e. some users find a compete 50/50 split others prefer a 60/40 split or a 40/60 or a …..etc etc. its what works for you.

Are you feeling better off the Lantus though?

Hang in there - I would say its early days & when changing any insulin regime its not always a quick easy process.
I also concur with iHs regarding exploring the possible pump option.

Best wishes

Txx

Thanks your post was informative. Yeah gastroparesis is hell on earth. I can't tell you how much I hate being shoved on insulin sliding scales every time I have a flareup. Wish they'd let me handle it myself with my own injections because really...none of them have a **** clue. And it DOESN'T control it. Going from 3 to 15 to 8 to 12 and having no control over it drives me to the point of insanity. And having your finger butchered every hour.....(WHY do hospitals not have allowances to get proper meters? these things are like something from the stoneage. The only hopsital I've been in where they had modern ones that didn't butcher and scar my hands was UCH London).


I worked out my insulin to carb ratio is about 1.5U. I stick to that and think it's about spot on. The only times it goes crazy I honestly believe is due to the gastroparesis and I have no control over.
I inject after eating due to the delayed stomach emptying. Sometimes food sits for days...or until it comes back up.
A dr suggested going on humulin K but I didn't because I had doubts...I mostly consume carbs and think novorapid is best for me as I don't really have hypos after meals but I'd be interested in anyone's input on this.

I really still don't know how this is going because regardless of what I do my levels are up and down. The morning hypos are much less frequent though and I'll stick with it and report back.