Afraid of sleep and food

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Northerner

Northerner

Admin (Retired)
Relationship to Diabetes
Type 1
As you probably know, I am Mr Perfect Levels most of the time, but over the past month or so I have been having to readjust my insulin doses day in, day out. My levels aren't awful by any means, but not knowing how my basal needs might change from one day to the next is bothering me. I was on 8 lantus a few weeks ago, then that came down to 3 because of night hypos. Then I went on holiday and it began to creep up to 5 units. But during the day I've been getting hypos because my novorapid requirements don't seem to have changed in the same way.

So, I am in a state of confusion when I try and calculate my meal bolus - it's turning into pure guesswork. Sometimes I'll end up high, sometimes very low. Hence starting to fear food! Also, because I can't work out what my basal should be, and because of the hypos, I'm scared to increase the basal too much. However, I've been waking to levels around 7 when they used to be around 5. I've become worried when dropping off to sleep incase it's a hypo coming on - sometimes it is, sometimes it isn't - but because I'm anxious, I'm sleeping very badly.

Last night I realised that my lantus cartridge was way beyond its 30 days out of the fridge, since I need so little of it, so I changed the cartridge last night and woke to 5.5 this morning - so it seems like that was an issue. Funnily enough, when I got the new cartridge out I noticed that I have only got through three cartridges in a YEAR!

I'm hoping that this was the issue - the lantus had basically started to lose its potency, hence the unpredictability of the levels. Stupid diabetes! 😱
 
Thats is a bummer.................your basal needs may well be changing but it sounds like the expiry date was definetly a factor to consider..........

You should only really have one lantus injection at a time though with doses that small.........

I hope it settles down.............
 
novorapidboi26 said:
...You should only really have one lantus injection at a time though with doses that small.........

I hope it settles down.............
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I've only ever injected lantus once a day. The doses really are getting tiny though - three units is only one more than the airshot, and with the autopen it hardly looks like any is going in. At least with the novopen you get some idea that you've delivered something!
 
shiv said:
Have you done any basal testing to help you work out if that needs adjusting?
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Again, that's part of the problem - when I think I've got it right, it changes! Probably not helped by the lantus being out of the fridge too long though. I tend to think in 30 day slots, but if you're only on 3 units a day, plus 2 for the airshot, then 30 days is 150 units - half a cartridge!

Having said that, there's not a lot of adjusting you can do when you're on 3 units - you either drop it by 33% or increase it by 33%, which is a pretty big jump. Part of my problem is the anxiety about having levels above range (which I've always felt), so I maybe try a bit too hard to keep it in range but now worry about the hypos as well. I hadn't had any night hypos for months and months until recently, when I have had a spate of them.

Oi! People who don't understand diabetes and think the worse thing is injecting - you're soooo wrong!
 
Northerner said:
That's just the problem - they're so unpredictable, so I can't really say!
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Hi Northerner,
You do seem to be on very tiny amounts.😱Alex was on 10 units (and this was a tiny amount) of levemir when he was last on MDI so it shows you how little your on compared to an 11 year old child.

I am wondering whether you should start afresh so to speak, and start with a set amount for breakfast lunch and dinner of say 1:10 and do this over 3 or 4 days to see if you can spot where things need tweaking. It would involve more testing and lots of maths - but hopefully you would be able to get to the bottom of whether its basal or bolus that is causing all the unpredicatable levels.

Of course you could always ask for a cgm for a week to give you peace of mind and to see what levels are actually doing overnight. Or you could even consider a pump.:D🙂Bev
 
can't offer any advice, but I hope you get things sorted and settled.

Is your care team of any help?
 
I think your in a place where any significant adjustment would send you high or low..........i suppose there might be a point where dose adjustment, with pens at least, can only go so for.............

Maybe try and allow for unperfect results for now...........i can often find myself so wrapped up in getting them on target its frightening........then satyrday comes.......:D
 
Being on tiny amounts is such a pain. When dropping my night time basal to stop the hypos, I ended up going from 13 units down to ONE unit before they stopped completely. I've been slowly increasing this again to now try and combat the highs I'm getting in the morning, without bringing back the hypos. I'm up to 4u, and like you say if I increase it I'll be getting an extra 25% basal. Sigh.
 
shiv said:
Being on tiny amounts is such a pain. When dropping my night time basal to stop the hypos, I ended up going from 13 units down to ONE unit before they stopped completely. I've been slowly increasing this again to now try and combat the highs I'm getting in the morning, without bringing back the hypos. I'm up to 4u, and like you say if I increase it I'll be getting an extra 25% basal. Sigh.
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Hi Shiv,
When do you start on the pump? You will find it so much better with these tiny basals that you need.🙂Bev
 
bev said:
Or you could even consider a pump.:D🙂Bev
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Actually that seems like a really good suggestion (this coming from someone trying to remain open to pumping despite some serious reservations).

I don't know what the drop-off in potency is for out-of-the-fridge, but I've deffo read about it if the insulin gets too warm. Your small Lantus doses will carry the additional complication that they won't last as long either. So when you drop a unit (which is as, you say, quite a significant proportion) you'll also be changing the activity duration. Very tricky to work out!

If you are open to pumping you'll get 1/40th unit increments to play with, and a constant trickle of insulin with a more predictable duration/profile. Well as long as your cannula doesn't kink, of course!

Have you ever considered pumping?
M
 
Hope you get some stability soon pal,

I would say I am similar in some ways and regarding ratios random is a word I too would use, and of late my levels have been not so hot in the morning, and higher when high!

I've said it to others, if you think you have no ratio, then keep a food diary and activites, if you are running etc as you well know your insulin requirements can vary a day or two after exercise etc, so keep a diary for a number of weeks and there is a very good chance some ratios/patterns will be seen.

My old nursey would say get the basal right first so maybe basal testing a bit then move on to working out breakfast ratios, don't change everything at once, then it really is impossible to work out ratios etc...

and tut tut on keeping those cartridges for so long!

Can you use a novo pen 4 with lantus? If you want I have a spare one (novo pen 4 that is, I'll di git out and bring it to next meet whenever that will be)

Take care one & all

Rossi 🙂
 
bev said:
Hi Shiv,
When do you start on the pump? You will find it so much better with these tiny basals that you need.🙂Bev
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Monday 🙂 it's only a 10 week trial, so there is a chance that I'll be back on injections in a couple of months, but I am seriously hoping they won't do that to me (if they do, I'll transfer my care down to Eastbourne).

edit: perfect example of typical levels right now, hence me still increasing the basal: 11.30pm 5.4, 3am 11.2 so a 2u correction, 9.30am 13.3. I only went up to 4u 2 nights ago so I'll stick with it for a couple more days before going up to 5u. Trouble is a few weeks ago I would still be hypoing every morning on 5u of lantus. Can't win!
 
Northerner said:
Oi! People who don't understand diabetes and think the worse thing is injecting - you're soooo wrong!
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Hi Northe,

I can't offer much advice on your doses - I've always been very insulin resistant and need lots of basal. However, wanted to completely 100% agree with the above comment! If only it were just the injections!

I'd also like to join some of the others in suggesting that a pump may work better for you - as Mike said, your doses can go up in 1/40th unit increments. Also, if you find your BG is lower at night than during the day you can set different basal rates for this. Since I started pumping I've worried about hypos, especially night ones, a lot less.
 
shiv said:
Monday 🙂 it's only a 10 week trial, so there is a chance that I'll be back on injections in a couple of months, but I am seriously hoping they won't do that to me (if they do, I'll transfer my care down to Eastbourne).

edit: perfect example of typical levels right now, hence me still increasing the basal: 11.30pm 5.4, 3am 11.2 so a 2u correction, 9.30am 13.3. I only went up to 4u 2 nights ago so I'll stick with it for a couple more days before going up to 5u. Trouble is a few weeks ago I would still be hypoing every morning on 5u of lantus. Can't win!
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Monday - how exciting! Why is it a trial though? Hannah says when she sees you in Brighton she will make you a carb counted meal (as a treat - I know you carb count anyway) and advise you on dual waves etc - if you want.:DBev
 
Thanks guys 🙂 Shiv, I hadn't realised you'd dropped down to zero! Definitely another reason for you to keep the pump! I'm still unsure about a pump. I think I've possibly read too much of the problems people have getting used to them, or even the scares they have from time to time. Having said that, I accept that transition is necessary, and that people don't post to say 'My pump was brilliant again today!'

The good news is that I am due for my annual review at the beginning of October, so will be able to test the knowledge of whichever arbitrary consultant I get to see an hour after my appointment time... 😉
 
Hey Northerner, have you thought about swopping to Levemir like I have. I find a split dose really makes a difference and it seems a much more stable insulin. You'd also get a novopen!! Plus I think you can get novopens which are measured in half units which would give you a finer adjustment each time. As your annual review is coming up soon I'd definitely suggest it. I was all over the place with Lantus and didn't trust it at all. I'm still getting to grips with learning to trust the Levemir but am pleased with it generally. Just a thought.
 
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