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Struggling for Control

R

rabdcd

Active Member
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Hopefully I'm on the right discussion board and one of you fellow T1's can sort me out!!

I'm 45 slim built and I've been type 1 since 1994, I like to think I'm a conscious diabetic and with my wife's help I've managed to keep my condition managed, that is until fairly recently !!

About 9 months ago my control just vanished and after loads of visits to the clinic the doctor eventually put a sensor under my skin for a week and pronounced my back ground insulin (Lemimir) wasn't having any effect so the choice was to try taking more and more or change over to Lantus, as my brother is using Lantus I decided to try it out to.

I was advised to start taking 30 units and build up daily until I got good morning sugar eventually I settled at 40 units however as soon as I ate breakfast (with Novo Rapid) my sugar jumped up and stayed up leaving me to take additional insulin with my in between snack now I'm in a cycle of very high and very low and nothing I've tried seems to make any difference and I simply can't get control

I don't believe the Livemir is doing anything for me during the day so having gone from 1 insulin which clearly stopped working to another which is no better I don't know where to turn

I'm about all out of steam with the doctors and diabetic nurses on this one and I'm always left thinking its your problem so If anyone has any idea's I'll be grateful if you'd share them

Robert
 
Hi rabdcd.

Can you give us some idea of your Bg levels on waking, before food, 1 and 2 hrs after foods as well.
A reading before bed would also be helpful.

What type of diet do you follow, and what did you have for your breakfast when you had the 'spike' in your Bg level ?

A T1 will hopefully be along shortly who can better advise.

Ken.
 
Hi Ken

Thanks for your prompt reply!

Going to bed last night I was 16, after taking 40 units of Lantus and sleeping I wakening with 5.5 which should be the perfect spring board for the day ahead, This morning for breakfast I ate an omelette a 70 gram tub of natural yogurt and a glass of orange for this breakfast I injected 5 units of Novo Rapid and walked to work and fully expected to be low before my snack however 2 hours after breakfast I was 12.5, I ate my apple and before my lunch I was still 11.4.

For lunch I ate a salad with some chicken and coffee for this food I took 4 units of novo rapid but theoretically I believe I shouldn't have taken any insulin but I was already high and hoped to support my system 2 hours after lunch I'm still 12!

Usually I follow a diet which contains the biggest meal for breakfast say porridge then eggs on toast with some juice when my sugar was behaving I'd inject 12 units of fast acting

Lunch would be varied say some pasta Evening would be light for example a sandwich and of course snacks in between including bed time. I'd like to eat more but my wife keeps me on a short leash lol but seriously my diet hasn't changed much over the years and for 14 years my sugar has been well controlled.

My levels are now running anywhere between 2 and 22 for the last 9 months on average I'd say I go to bed with sugar around 15 I really thought it was just down to the Levemir which literally stopped working the doctor showed me a graph which showed the novo rapid doing its work but my back ground was so high my sugar would go up and down only as far as my back ground sugar level. At first I couldn't work out how the insulin would just stop working like I was just pumping water into myself it didn't peek off and drop gradually it just stopped working!! it's been hard to gauge the effects of Lantus as I was having to monitor and adjust until my morning sugar settled however that only just happened and to me 40 units is a lot of insulin to take. I can't say Lantus is not working because it clearly brings my sugar down during the night but I don't think its having any effect during the day.

Robert
 
Hi Robert.

As I am only a T2 and not on Insulin I really need a T1 to give you some good advice.

However I think that this is going to be down to a combination of your diet and Insulin dosage. I think both of them may need some adjustments ? Only a T1 is going to be able to help you with that. At least now we have some information from you that they can see.

Ken.
 
Hi Robert,

It sounds as though your Lantus is working too quickly overnight and then tailing off too soon the next day. One solution is to split your Lantus dose 50/50 and inject morning and night.

If needs be, you can tweek your AM/PM ratio to suit.

Good luck,
timo.
 
I agree with Timo, certainly you should not need to go to bed with a level of 16mmol. If your basal is properly adjusted there should be very little variation over the night (as long as the rapid has finished working when you go to bed) It already appears clear that a split might be necessary (and in many people lantus doesn't seem to last for 24 hours but it might be a good idea to do some basal testing .)
This article might help
http://www.diabetesdaily.com/forum/articles/16675-basal-testing-multiple-daily-injections
 
Guys I spoke to my diabetic nurse about splitting the dose up but he was insistent on talking it all at night however like you I feel the dose needs to be split so I'll give it a go for a few days and post how I get on in a few day time

Thanks for helping

Robert
 
Do you do much high intensity exercise? Like jogging, cycling, swimming, weight lifting or sports? I have had times when I could take 10 units of novarapid and after 3 hours, my sugar levels have went from 20 to 18. It's incredibly frustrating to think that the insulin you're injecting isn't working and it sounds a lot like you have become insulin resistant. I know that for me,taking large amounts of insulin over a few weeks, without doing any high intensity exercise makes me very resistant to insulin, to the point where a 30g carb meal means high sugar levels for me no matter how much insulin I take.

When I was this resistant to insulin, I started exercising and ate a low carb diet for a week or two just to get my insulin sensitivity back and after a while, insulin reacts much, much faster in your body, meaning you don't have to take as much and when you do eat, your spikes are never above 8.
 
Sorry apart from walking as much as possible I get very little other exercise (I know I know!!!) Just recently I was tested for all sorts of possible causes including insulin resistance and antibody's and I was fine. I actually visited the diabetic doctor again last night and he is running a few more tests to see if I have any infections and again for antibody's. The doctor has asked me to try a new insulin (Apidra)

I'm very concerned that I've managed really quite well for the past 14 years then just like a bold from the blue almost overnight my sugar levels went high, like I said previously Levemir did stop working I saw the graph myself and now I've been using Lantus for about 4 weeks but I'm no further forward

Taking note of the advice from the forum last night I decided to split my dose of Lantis so going to bed my sugar was 8.8 which is of late is decent I woke with sugar at 10.2 and took 15 units of Lantus followed by breakfast which consisted of 1 slice of rough bread with cheese and a small glass of orange (I will not take the orange again) with 8 units after 2 hours my sugar was 16.3. pre lunch my sugar dropped to 4.9

I'll experiment with this regime for 3 days hopefully things will improve as I'm seriously worrying about long term effects now

Thanks Robert
 
Hi Robert,

It'll take a couple of days for your basal doses to even out.

What condition are your injection sites in? Do you inject Lantus and rapid in the same site?
 
Hopefully the split injection will sort my problem out

Injection sites are good and I constantly move my injections about mainly legs and buttocks for Lantus with arms and stomach sides for novo rapid
 
Hi,
you must be feeling pretty lousy with such bad control. My advice to you, having had a similar experience, is to get yourself onto insulin straight away.
Purified Animal insulin that is. it DOES work, and I am pretty sure with the right doses you can have good consistent BS control.
It's really that simple. You just have to choose between bovine and porcine. It is available in pen cartridges too.
Why is everyone on Lantus or Levemir, when there are other synthetic insulins and animal insulin available?? The two "L" wonder-drugs clearly aren't working for many people :evil:
i remember reading online that a study showed that a fair percentage of lantus can remain in the injection site for up to 36 hours- that would expain why it appears to work sometimes and not at other times. I had no consistency in my BS control whil on Lantus, thought it was ok at first, and when I had probs, thought it was my fault- took me nearly 5 years to make the link. Doctors are continually ignoring patients concerns, and are reluctant to change patients' insulin. In my case, my consultant did not log any of the problems and side-effects I reported that I was experiencing ,in my patient notes-I intend to have this rectified. :x
Best of luck Robert
Jus
 
Just a bit of a query...

If the synthetic insulin varieties are a man made copy of human insulin why would animal insulin be a better substitute?

I have been told that cost is the main reason for the synthetic varieties being the medical choice.

I can't say I am having any problems with my son on Levemir. He's been on it for 2 years so I suppose there could be plenty of problems ahead, but hopefully not!

Cheers, Jen.
 
Hi,
As I logged on tonight I've had ANOTHER private message from someone having probs on Lantus, I've had 2 such messages in 2 days, and many more since posting on this forum.
I note that your son is very young. I am lucky enough to have had my childhood diabetes-free as I was diagnosed at 19. I do, however, know what it is like to feel 'normal', and on Lantus I did not feel normal at all. I felt continually exhausted, zombie like, and had a lousy quality of life. My control got worse and worse, and I had no BS control consistency from day to day. My point is that if people are on these insulins from a young age, and report such symptoms, it will just be considered 'normal' to feel this way, and part of the condition of being diabetic. The patient will not know any different.
Since changing to pork, I feel like a different person, than when I was on Lantus, other people report the same feeling.
I'm glad your son is doing well, but the choice for real insulin must remain, for people who react badly to the synthetic form. I tend to think that more of these people will come out of the woodwork as time goes on, recent postings support this.
I am no expert, but synthetic insulin is produced by genetically modified microbes, it is not "human" insulin, but is designed to work in the same way to reduce the blood sugar. Animal insulins ARE insulins, and closer to genetic "human" insulin.
Jus
 
Hi Robert,

It sounds like you are splitting the Lantus which sounds like a good idea; I would try and make sure that it is done evenly i.e. at 8:00 am and 8:00 pm and split the current dose half and half initially.

As you have said the orange juice is not helping; for me this puts up my blood sugar faster than pretty much anything else. I find now having had Type 1 for 30 odd years I can hardly tolerate any refined carbohydrate at all - possibly you are in the same boat? Porridge for me was terrible; it felt so noble and healthy but it shot my blood sugar through the roof...!

The other thing I would suggest is set your alarm for about 6 hours after you take the evening Lantus and test your blood sugar then; there is a slight possibility that the disruption is due to you going low over night and then having some form of glycogen dump several hours later? I am a fairly sturdy 6 foot diabetic and am on 24 units of Levemir a day (split dose) so to me your 40 units does seem high; but of course each to their own.

The thing is with our diabetes control that I take comfort from is that for all the spikes and lows it is operating to a pretty simple cause and effect; glucose eaten and insulin taken and underlying metabolism are the operating factors. We can change each one and by a process of elimination it is possible to sort it out however frustrating it seems at the time.

I'm sure it will all work out if you keep thinking about it.

Dillinger
 
From a bit of research around the net it would appear that the "synthetic insulin produced by genetically modified microbes" was the first genetically produced drug introduced to the population? and if everything written on the net is to believed it was rushed through at record speed and there's been no conclusive follow on study done?

We are all individual and when we feel Lantus or Levemir or whatever is not suiting us the doctor needs to listen and let us change insulin's
 
Go Robert, Go Robert! A very important point, made perfectly. No one can possibly know the long-term effects of these insulins, and I'm not prepared to be a gineau pig any more. Just on pig insulin :D
My son, ,was unlucky enough to be diagnosed with Ewings's Sarcoma at the age of 9. He's endured the most horrendous side effects from high doses of chemtherapy. As parents, we had no choice but to put him through the treatment, we where told he would die without it. In my son's situation there was no choice, but Diabetics do have a choice.; whether to take insulin which has been proven safe for many many years or a synthetically manufactured alternative. I, personally feel decieved and wish I had known more about what 'insulin' I'd been taking for 19 years. Truth is, most of the doctors prescribing it don't have a clue;or do they? There's big money behind synthetic insulin, that's the driver,and unless the people having probs speak out, we will have no alternative treatment in the future.
Jus
 
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