Lantus... loss of hypo awareness... please help!

[kwh]

Hi all,
I know there are various posts regarding this sort of thing but I felt it'd be better if I told you about my personal situation in the hope someone can give me some advice.
I am 25 years old, have been Type 1 insulin dependent diabetic since I was 18months old. From when I was diagnosed until around a year ago, I was on two injections daily and it worked fine. I had no issues with it. However, at the clinic, my doctor told me that sooner or later I'd need to switch to a new programme. So I did. I am now on 3/4 injections a day. I take Lantus Solostar before bed (34 units), and Novorapid before meals (10 units).
However, my control (previously was immaculate... doctor's model patient etc) has slipped. I seem to have lost/be losing control and have little or no recognition of hypos. I only notice once it's too late and I can't do anything about it and need help from colleagues, partner, friends. Additionally, my hypos have become increasingly bizarre. I have 'spasms' and what I'd describe as involuntary body movements. THis happens regularly now. It's scary to experience and I can't pinpoint what is causing the problems.
I admit, I am 25, I drink with my friends etc, but i know where to draw the line. I eat 'ok', I certainly don't have a perfect diet but I get the food I need.
But the hypos are becoming so common and bizarre/scary, that I am living frmo one day to the next and getting to expect them to arrive.
I hear that people say once your body is used to diabetes (I've never known not having it) that your body doesn't respond to signals anymore. And I have also read that people on Lantus have experienced loss of awareness.
I'm worried, and would really appreciate your help. I am speaking with doctors, but I feel the advice on here, coming from diabetics experiencing it, is much more helpful for me.
Can people give me their thoughts/advice on the situation?
Any help, much appreciated.

Many thanks
Kevin

 

[iHs]

Hi Kevin

If you got ok control with 2 injections and were happy then insist that you carry on using it. Although Novo have now pulled their twice daily insulins from the market, Lilly still produce 25/75 Humalog Mix, also Aventis do twice daily insulins along with Workhardt (animal insulins).

Because of the tendancy for Lantus to cause hypos if injected as one dose, quite a few diabetics now inject it twice a day (using smaller amounts). Levemir made by Novo is another background insulin which is a lot nicer to use than Lantus. It doesn't cause involuntary movement that you mention and many think that their hypo awareness improves. Its downside is that it works best if injected twice a day.

Try and find out from your doctor for information on carb counting and using insulin to carb ratios and then hypos then be much better for you. Usually, hypos are either caused by incorrect amount of basal or using too much bolus insulin for the carb that is eaten.

Hope this helps you a bit in deciding what to do.

 

[kwh]

Thansk v.much for the reply. I'll look into those. SO the involuntary movements are a side effect of the Lantus? People assume I'm having an epileptic fit, not a hypo when this happens, so they don't give me sugar...

 

[janabelle]

Kevin,
You can change back to the previous insulins you were on or a basal bolus regime as your doctor suggested. However that regime does NOT have to include Lantus, Levemir or Novorapid, Humalog or Apidra. There are many insulins available, synthetic human and animal varieties.

When I was on Lantus, aside from the dire BG control(no control :cry: ), I suffered what you describe as muscle spasms; I felt like I was going to have a fit sometimes and it was very frightening. Such problems are reported by patients on lantus and other synthetic anaologue insulins. I thought I had Parkinsons or MS, as I developed an intermittent tremor. As for hypos, I couldn't tell when I was hypo, and sometimes felt hypo when I wasn't. Blood sugars were all over the place, no pattern to it whatsoever, and different everyday no matter what I did :cry:
You are not alone in what you are experiencing, you can do an internet search for Lantus and what you are experiencing. Also you might want to take a look at this thread on this forum viewtopic.php?f=26&t=2797.
Your doctor should have left well enough alone and saved you the grief, but sadly these drug companies are very pushy and seem to have the medical profession in the palm of their hands.
You could contact the IDDT(insulin dependent diabetes trust)http://www.iddt.org/ They will be able to advise you further.
I like you was ticking along nicely, never great control though, until given Lantus-things went downhill from then. Thankfully due to the help from my husband, this forum and the IDDT, I changed to Pork insulin 2 years ago, and life has been good since. Doesn't work for everyone, but I'm very grateful and wish I'd been offered it when I was diagnosed 21 years ago.
Are you seeing your doc again soon?
Jus
ps my feeling that I was about to have a fit was not related to hypos, sorry should have mentioned that. I did have an episode when I was shaking uncontrollably and shivering and my husband had to call NHS direct for help- I wasn't hypo at the time. Also taken to hospital with rapid heart rate, and chest pains while on Lantus- others have also reported similar things.

 

[iHs]

Hi

One of the best ways to sort out your insulin correctly is to get hold of insulin pens that deliver in half unit increments and then start to test yr blood glucose levels 6 times a day making a note of the amount of carb that you eat for each meal including snacks. That way you will start to see what the insulin does to your bg levels and can stop yourself going hypo by testing mid morning and mid afternoon and possibly eating a snack if you are below 9. Ideally you should try and be somewhere between 5-7 before you eat br, lunch and eve meal and then no higher than 9 mid morning and mid afternoon.

Until you can see a doctor again about lantus, try splitting it - morning and bedtime. Do you wake up with low bg levels in the morning?

 

[badmedisin]

Hi,
so why did your doctor make you change your regime? If something is working for you, what's the point of changing it? If you want to go back to twice daily injections, just do it. Ultimately it is your choice, not your doctor's, as he doesn't have to live with it.

As for hypo unawareness, it's not that your body gets used to diabetes. I've been diabetic for 23 years and have always been aware of hypos. You lose awareness if your levels are running low all the time, so maybe you're doing too much insulin? The only way to tell is to test more often and write it all down so you can see patterns. The other possibility is that the change of insulin doesn't suit you. Many people lose hypo awareness when they change insulin.

Do take janabelle's advice too - she knows all about the problems lantus can cause. I've recently switched to porcine isophane from lantus, and while I'm still trying to work out the right dose, I'm already having far less catastrophic headaches and my legs don't get so tired when I walk. So maybe another insulin would work better for you.

If you do want to stick with a basal/ bolus regime, which many people find is much more flexible, you might want to try and do the dafne course. They'll teach you how to adjust your insulin to your food. You say you have 10 units of quick acting before each meal, so are you having the same amount of carbs each time? If I had 10 units before each meal, I would have to have 50g carbs at every breakfast and lunch, and 40g carbs at every dinner. Which means the insulin dose would be dictating what I could eat, and the point about basal/ bolus is that what you want to eat dictates your insulin dose. So dafne might help you learn how to use the method to your advantage.

Anyway, hope that helps! Next time you go to the doctor, don't let him force you to change anything you don't want to change. His job is to give you the facts and explain your choices, so that you can decide for yourself

 

[KimSuzanne]

I'm 27 been diabetic 20 years and my consultant reccommended Lantus. I experienced exactly the same symptoms as you did on Lantus my consultant and diabetes nurse said I was silly for thinking it was the Lantus that was over a year ago, I insisted on changing the insulin regime back to one I was happy with. You are well within our rights to ask them to change back to your old regime.
Unfortunately my hypos aren't completely back to normal as I now have involuntary muscle spasms for at least four hours after a bad hypo but much now I don't hypo in the middle of the night or ring my mum and sing 'Merry Christmas' to her, scared her senseless but it was quite funny.