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New user - Desperate for help

Thanks so much for the advice so far.

I think with what has been discussed here my problem is clearer,
At the moment,while my averages are ok and my hba1c is in 'diabetic' range, the truth is that my bg levels are far too volatile, I have hypos all the time and readings that are 8 and upwards are common. The variance in my bg levels has no doubt contributed to my neuropathic pain.

So something needs to be done with both my insulin doseage and my diet, and that will hopefully help bring my hba1c down to between 4 & 5.

As for the carb diet, having analysed my regular diet today, I see no problem in cutting back a little if it means more stable bg, but I still think they will form part of my regular diet for the time being, just not as much.

So I will act immediately on the advice being given, and I will evaluate my basal dose, then take it from there, I'll report back with what I find!
 
NOT an insulin user, but I wonder about this habit of only using Levemir once per day in the UK.

AFAIK Lantus was *designed* to be a once per day basal, though in practice it may last between 16 - 30 hours. Levemir was *always* meant to be dosed twice a day.

There's some excellent stuff here

http://www.dsolve.com/

http://www.insulin-pumpers.org.uk/

(also the US site)

most insulin users recommend the two books listed above also

Long shot, I know someone else with intractable neuropathy which was actually due to misdiagnosed Lyme disease which went for too long untreated. Be well worth getting that neuro consult to rule out such things. It is local in incidence here which means if you get it on holiday and take it home with you your local GP may not consider it.
 
Unfortunately I could only access the abstract, because its quite old but there was a 1992 paper on 'early painful diabetic neuropathy' They studied a small group of Type 1s with varying neuropathies occuring fairly early after diagnosis. It has a very reassuring conclusion
'Early-onset symptomatic polyneuropathy in patients with diabetes mellitus is characterized by the loss of both myelinated and unmyelinated nerve fibers. Spontaneous axonal regeneration is remarkably frequent, even when neuropathy is severe.'
http://content.nejm.org/cgi/content/abs ... 26/19/1257
 
Wow. That is fascinating Phoenix, I know there's not a lot of information there but it does at least provide the hope that the damage is reversible. As I said earlier, tests on nerves in my extremities have indicated no real damage to my nerves.

I think that the basal rate, and the use of Levemir is the key issue, after glancing through a few of the articles that have been recommended to me (I'm still in work so I can't be too thorough!) Some things are becoming quite clear.

My dose of 16 units of Levemir is usually taken at about midnight. I arrived at the figure of 16 by a sort of ad hoc testing that I did alone about 2 years ago, I now see that I have an awful lot to learn about how this works, it actually makes me ashamed in a way because I thought I knew so much.

Anyway, if Levemir is supposed to last 16 hours then that means that between 5-6PM my basal is running out. Which just so happens to coincide with the time that my BG usually goes up, and then I have great difficulty keeping it down until I take another shot at midnight.

Also, night time hypos are unfortunately common (for instance I woke up a little low this morning) I'm sure this is due to the fact that I am taking such a huge dose of Levemir in one go and it is forcing my basal rate right down in the early hours of the morning, so that no matter what I'm reading at night, I can wake up with a low in the early hours. So my basal regime needs a big change I think.

It's very clear that my care for myself is a little all over the place. I do feel like I've had to stumble around on my own a bit in an attempt to find a system of care that works best for me, however there is a lot of very interesting stuff being raised here and I ask you to keep it coming!
 
If it helps, I wanted to mention a couple of things.
Firstly, I used to find the same pattern with my basal insulin (Lantus) running out late in the evening, taking one large dose at bedtime, and waking up low in the morning.
Splitting the dose virtually stopped both of those things overnight.
Secondly, I met a guy called Vigo Bruch recently. He happens to be the MD of Novo Nordisk here in the UK. I spoke with him about Levemir because I was thinking of trying it as a replacement. He was quite certain that it doesn't work for 24 hours and that users should split their doses to get full basal coverage.

All the best,

fergus
 
Even though levimer is a once a day injection, there is a high amount of diabetes that find that get a better basal splitting into 2 injections a day

The manufacturers website advertises it as a once a day injection which it ws designed to be..

Before using a insulin pump which uses only quick acting insulin, I found that I got a better basal with injecting twice a day, but unlike most people I didn't inject 12 hours apart but had a off set 11pm and 11.30pm to gain the best effect.

But my husband who also a T1 diabetic, finds the once injection to be fine for him.
 
This is how the NovoNordisk website puts it:


The implication is that it isn't necessarily a once-a-day regimen, but that the best coverage for an individual will depend upon a number of variables. The NovoNordisk man is certain that the great majority of his customers find a split dose much more effective. The same is true for Lantus I think. The once-a-day promise is something that the market has demanded, but the products at the moment aren't quite up to it yet. There is a new longer-acting variant of Levemir on trial at the moment.

fergus
 
Good morning all,

Just thought I'd update you, I've changed my regime as of last night and I'm well aware that it is going to need a lot of refining, however it's a start.
Firstly, I've changed my dosage of Levemir at midnight to be 6 instead of 16, and then take 10 when I wake up, just to see how that goes and whether there's any change I'll notice over the next few days.

Now this morning two things have come up that are interesting in light of changing this-

Here are the BG for last night

00:41 4.2
01:27 4.1
05:02 4.4
10:40 6.0

So I haven't had any breakfast this morning, and I took the shot of 10 levemir at 10:40 (Slept in )

So anyway, the main thing is that BG seemed stable during the night, in my previous regime, had I had that BG reading before going to bed, taken 16 levemir and gone to sleep, I definately would've had a hypo during the night.

The other thing is the issue of my BG rising to 6 by about 10:30 in the morning, I just thought I would elaborate on this to see if it helps.

I have always found my BG in the morning to be within a fairly reasonable range, barring nothing unusual it can always be counted on to be between 4 and 6 (this is testing anytime between about 7am and 10am)
However I have always found that if I have a lie in or skip breakfast, it is not uncommon for me to get a higher reading, say between 7-9 mmol/l.
So I assume that this is something like dawn phenomenon or something?

Anyway, there's no point in drawing any amazing conclusions from half a day of a new regime! However I just wanted to run it by you guys and see whether you think there's anything I should be looking out for/doing wrong.
 

I'm a bit gobsmacked that they think they can sell this as a 24 hour insulin, the majority of users I know are in the States, plus a few in Canada where it was only recently introduced, and I don't know *anyone* outside of the UK who doesn't use split doses, even people who managed to get 24 hours out of Lantus need to split Levemir. The benefit is that it seems to be much more even and controllable, not many people have switched back again.
 
Hi fink,

There are some medications that won't reverse the neuropathy, but could give you some relief from the pain you are experiencing.

Duloxetine (non sedative)
amitrypitiline (sedative but can help at night if pain keeps you awake)
gabapentin (can cause drowsiness)
carbamezepine (blood monitoring may be required. a bit sedative for some people but tends to improve with time).

I agree, you have been very unlucky to have such a severe problem after a relatively short time since diagnosis. Truly tight/ normal blood sugars are the most effective way to heal your poor wee nerves. You have already had some excellent advice and I hope you get control soon.
 
Thank you for the continuing information, it is quite a lot to take in and I must admit that I am still struggling getting the basal rate right and it's going to be very difficult in the coming days to keep control as I sure it will be for all of us.
However I would like to put such concerns aside for a moment and I would like to wish all of you a very Merry Christmas, and once again thank you so much on giving me a whole new perspective on how to handle this disease.

Peace and goodwill to you all.
 
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