Still not working!!

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emmahope DAFNE Graduate
St George's University Hospitals NHS Foundation Trust
17 posts
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I am waiting to go on the pump as my diabetes refuses to behave- although my HCPs have been working on it with me. Approx. a month ago I changed from 14u Lantus @11a.m. to 14u Levemir,which seemed to give more stable BMs through the day. But after a couple of days with things looking better, 14Levemir caused early hours hypos and that didn't stop until I was down to 12u and then had another couple of Hypos early morning so reduced Levemir again to 11u. Now BM is elevating. Reviewed things on Tues. with HCP and she recommended against changing BI upwards again (to 12u) and gave me suggestions of limits on corrections.She seemed to think highs I had last w/e were a blip but I am not so sure now. Thinking maybe I should start changing my ratios. They've now set my targets between 6-11 as I have tendency towards black-out hypos and up to 12 hr rebound high Bms afterwards. They say the first thing is to get rid of hypos. Course I'm not happy to run high but it might be better than extreme up and downs as a basis. Complications of kidney disease and gastroparesis, they think ,cause my body's unpredictability and QA (Humalog) staying in my system for 8(ish) hours at times. Does anyone have any ideas please? I don't see the consultant 'til mid Jan. With my complications, folks might not want to comment,which I'd understand- things can work differently with complications. Thanks, Emma

novorapidboi26 DAFNE Graduate
NHS Lanarkshire
1,819 posts

As your on Levemir now, you should really be thinking about splitting it, it is most commonly used in this way..............

This means you can have a reduced dose at dinner/before bed, and therefore eliminating the overnight hypos, and then a higher dose in the morning to keep you steady during the day............

Has this been discussed with your team?

Have you done any basal testing to see where you need it most etc....?

I think your background requirements need evaluated and a split is on the cards, until this is established any advice on insulin carb ratios would be inaccurate....... Wink

P.S. Having a glass of wine does not mean you should not take insulin for the carbs you eat after it, as the effect of the alcohol wont happen till much later, usually a reduction of BI is used to fend of alcohol induced lows, however this is only possible on a split dose, there is much more flexibility on Levemir, the reason I assumed your team put you on it, no?

emmahope DAFNE Graduate
St George's University Hospitals NHS Foundation Trust
17 posts

Hi Novorapidboi26, first the wine...normally I would go to bed eating something like a couple o biscuits to stave off hypos - it's worked before but last 2 times I've had wine I haven't had the usual Lo-as you see in example here (trifle is not normal for me but the small portion i had shouldn't be different from biscs)?? My body's 'patterns' aren't reliable... And I found out that is a good reason to not be having your BI in the a.m.- re. pre-planning for wine
I asked about splitting dose but think HCP wanted to wait for the consultant to make any decision about splitting it as BMs have proved so shifty/changeable and the insulin seems to stay around longer in my body. Anyway the BI checks is a good idea as a start, thanks- I'll try that.

novorapidboi26 DAFNE Graduate
NHS Lanarkshire
1,819 posts

How did you get on at the DAFNE course? Did you leave confident in changing your doses.......?

Missing out the QA because of the wine has shown in your above results to be wrong as you have woke up the next morning high, the truth is, one glass of wine wont trouble the liver that much, a bottle might, and does for me only slightly, I would need to drop my AM BI a few units the next day. If it was vodka probably even more..........

What do you mean your body patterns are not reliable.........? I would say this is a good reason to have a BI dose in the evening/before bed and then one in the morning......

Your livers glucose output does not stay constant throughout the day as your body winds up and winds down at the beginning and the end of the day, and that's why splitting the BI dose works better to accommodate the different needs of day and night.......

What was your reasons changing to Levemir, was the Lantus not lasting?

emmahope DAFNE Graduate
St George's University Hospitals NHS Foundation Trust
17 posts

I have been using DAFNE from before doing the course and learnt some new things but was doing everything more or less already. The hosp are confident about my dose changing; I am- practically speaking- but working so hard on your diabetes and your body's responses being so changeable is enough to cause a person to give up...I will not though.
Saying ''my body patterns are not reliable'', i mean that my body responds differently to the same input on a daily//weekly/monthly basis so 'patterns' are not consistent at all.
I promise you I was having hypos on my one glass of wine before a few hours after-I know that's very unusual but we are all different. Seems though i'm responding differently twice to the 1glass of wine since i'm no longer on the lantus so I'll try no carb in response to the wine now.
Having had diabetes for 34+ years/kidney disease/gastro-p. and autonomic neuropathy, seems to explain difficulties I have to the Drs, so although that does't make things easier for my situation, at least I know they are trying to help get things as well as possible with my Bms.
I am considering splitting the BI but neither the HCP or I are immediately trying that because of my history with seemingly uncontrollable D,severe hypos kidney disease'(insulin remains in system much longer than 'should') and having no improvement with a split dose before. I'll wait to see the consultant. I'm always glad for your generous input on this site, Emma

novorapidboi26 DAFNE Graduate
NHS Lanarkshire
1,819 posts

It seems you have had a hard time of it...................

My understanding would be that it there were so many different variables within your diabetic control then more doses would suit you better.........

I see you have Gastro P, cant remember the full name of this, but this is a digestive condition isn't it? This alone could be responsible for all you problems so far, at least the unpredictability of your blood sugars.......

I have no doubt you have been trying your very best with it................

What have your most recent basal tests shown..............? I would expect this insulin need to remain reasonably stable like someone without gastro, the problems would be with the QA doses, trying to match up timings and doses to unpredictable digestion must be a struggle.............

If you haven't tested your basal in a while it would probably do you good to pin that down as much as you can, allowing you to take on the bolus task.......

Have you been offered a pump, this could help I suppose, although would be hard work............

emmahope DAFNE Graduate
St George's University Hospitals NHS Foundation Trust
17 posts

Yes,don't know if they have funding yet but if anyone's going to get it at my hospital my quallifying is in no doubt. It will be hard work but am willing -nothing else has significantly worked. Lantus didn't work on 1 or 2 doses (it was lasting significantly longer than they say it should) but as soon as consultant says I will try 2 doses of levemir, I will wait until she says -to know 'we're on the same page', as taking risks with severe hypos or just feeling more out of control by myself isn't worth it. Seem to need less insulin Bi proportionally in the early hours, so that will inform the doses if/when i split again (levemir). Some days my ratios are fine (QA) sometimes it doesn't work, same with BI although I've tried lots of different things for the last 2years.. My body doesn't comply with the guide book!! Still, DAFNE is the best most flexible system there is. My whole calorie load affects my BI needs too which prob has to do with the many effects of gastro paresis and autonomic neuropathy.I have only tested during night so far and pre-breakfast in terms of fasting tests but I will start testing BI on return from staying with friends over xmas. Thanks, E

ChristineBat... DAFNE Graduate
Northumbria Healthcare Trust
23 posts

Hi Emma, I have been diabetic since the age of 10, for 33 years now. I too also have a lack of consistency, and what works well one week doesn't the following week. I used to base any changes to my insulin doses on the 'history' in my BG diaries hoping that what worked once would work again, and got very frustrated when it didn't. And I'm not talking about weeks old history.....I'm talking about 4/5 days previous. I now 'tweak' my insulin on a weekly basis without looking further back than 4 days of results, and take each day as it comes. I have had to 'let go' of what worked one week may work again.....I blame a lot of this on female hormones too, however there are no patterns in my BG results leading up/during and post my monthly. I'm in very good control and just 'follow' my BG results around tweaking gently, and it works for me. I have learnt to not get disheartened by the lack of consistency, frustrating as it may be. Thankfully I have no complications. I'm on a split dose of levemir (on waking at around 7-8am and a dose at 10pm before bed) and use Novorapid as my QA...and like Novorapidboi I could bathe in the nectar!!( I'm sure he said that in a thread)!!!! I've tried many different insulins over the years and this is the best! Good luck. Christine.

novorapidboi26 DAFNE Graduate
NHS Lanarkshire
1,819 posts

ChristineBattista said:
( I'm sure he said that in a thread)!!!!



I believe I did........ Laughing

HelenP DAFNE Graduate
Queensland Diabetes Centre, Brisbane, QLD
218 posts

Hey Emma, and Christine...
Exactly. My diabetes was all over the shop until i did Dafne and began playing with the doses/times etc. Like you I then worked (with the endo) on fractional ratios, changing insulins, times of shots and tweaking the doses. This bought me better control but it was still not great. I am now on a pump and guess what still tweaking more than most in similar positions. I regard it as a moveable feast but it is interesting to go back and compare doses (I keep very detailed records). I have found the TDD remains within a band of about +/- 15% but the time of day I need what dose (basals) varies depending on things like how much sleep I get, what time I go to bed, the weather etc. and there seems to be a delay of a day or so (just to complicate things further!). I still prefer the pump but it took a long time to "learn" its parameters and to work out rules to the tweaking. Still learning, still tweaking! I am a long way from "set and forget" and this routine requires more attention to detail than I imagined. I tried the Dafne principle of eating what I liked/when I liked but found that only added more variables so have put myself back onto a fairly consistent diet.

The pump may not be the answer you expect.

Keep at it. Helen