Coming off insulin?

[carandol]

Quick background. I was diagnosed as diabetic in 2003, and for first few years managed it with food. I started having trouble with high sugar, and was put on metformin in spring 2012, but found it made me ill, even the slow-release variety. I was switched to gliclazide, and that seemed to be getting things under control, but then suddenly stopped working in November 2012, and I was switched to insulin (Novorapid with meals, Lantus every night). It took a month to get my doses right, during which time I was completely unable to work due to brain fuzz. I'm now controlling my blood sugar pretty well.

I went to see the diabetic specialist today, and he says my c-peptide test shows my pancreas is still producing insulin, and I could go back to drugs if I wanted. He suggested gliclazide to start with, and another couple I've never heard of, possibly in conjunction. The advantage, as he explained it, is that I wouldn't need to take insulin. But I'm wondering if there's a cost-to-the-NHS calculation going on there too. Knowing how much trouble I had with drugs in the past, and how long it took me to find the right drug and the right dose of that drug, I'm reluctant to come off insulin if it means weeks or months of ill-health while we experiment with finding what's right for me. I'm a self-employed writer, and if I spend too much time off work, my business will collapse and I'll be on the dole queue. It seems like a bit of a gamble just to get off insulin, which doesn't actually bother me that much.

Does anyone know if there's any other advantage (possibly in terms of long term health) in getting off insulin? Anyone done it and can tell me stories of triumph or tragedy? The specialist has put it off for a while, and says he'll ask me again in 3 months, so I need to gather all the info I can get...

 

[anna29]

Quick background. I was diagnosed as diabetic in 2003, and for first few years managed it with food. I started having trouble with high sugar, and was put on metformin in spring 2012, but found it made me ill, even the slow-release variety. I was switched to gliclazide, and that seemed to be getting things under control, but then suddenly stopped working in November 2012, and I was switched to insulin (Novorapid with meals, Lantus every night). It took a month to get my doses right, during which time I was completely unable to work due to brain fuzz. I'm now controlling my blood sugar pretty well.

I went to see the diabetic specialist today, and he says my c-peptide test shows my pancreas is still producing insulin, and I could go back to drugs if I wanted. He suggested gliclazide to start with, and another couple I've never heard of, possibly in conjunction. The advantage, as he explained it, is that I wouldn't need to take insulin. But I'm wondering if there's a cost-to-the-NHS calculation going on there too. Knowing how much trouble I had with drugs in the past, and how long it took me to find the right drug and the right dose of that drug, I'm reluctant to come off insulin if it means weeks or months of ill-health while we experiment with finding what's right for me. I'm a self-employed writer, and if I spend too much time off work, my business will collapse and I'll be on the dole queue. It seems like a bit of a gamble just to get off insulin, which doesn't actually bother me that much.

Does anyone know if there's any other advantage (possibly in terms of long term health) in getting off insulin? Anyone done it and can tell me stories of triumph or tragedy? The specialist has put it off for a while, and says he'll ask me again in 3 months, so I need to gather all the info I can get...

Hello carandol .

I have given a member I know who has managed to come 'off' insulin a tap for you .
Am sure he will be along soon with a post to explain his story and offer you some support/help .

Medical intolerance's is something I understand very well .
Its a right pain - when a prescribed med wont agree or be tolerated well .
It can make things much harder and difficult in terms of progress .

I had to dig around to find a more suitable insulin for myself .
Was unable to tolerate the human insulins :thumbdown:
I 'do' understand where you are coming from completely .

Best approach is read up on it all and make your own choice
As you will 'know' what can and will affect you 'wrongly' intolerance wise ...
It is the untried meds that become the 'worry' - we have no way of
predicting their performance in our body . roblem:
Hate it - when I have to do the 'by' trial and error route/way !

You can use the next 3 months to find out much about things .
Make your own mind and choice up :thumbup:

I did this with both victoza and my porcine animal insulin .
They both agree with me [took some digging about though]
And hey ho it "worked" - well worth digging deep and swatting up on :thumbup:

Hope this can help a little .
Anna.

 

[CollieBoy]

Good luck in this, carandol. :thumbup: :thumbup:
I came off insulin, after about 2 years :
Bolus & Basal,
Basal only,
then Gliclazide
then Diet only.
Slowly weaning myself off, pushing the drugs lower, The HCPs being dragged behind me :lol: (and pushing the carbs lower too 8) 8) )
They never said,"Do you wnt to cut back/stop X" It was all "Can I try cutting back on X ?"
Hardest part was getting GP to admit 40mg Glic existed and I didn't need to cut 80mg tabs in half. :crazy: (Practice nurse stll not convinced you could do this !)

 

[carandol]

Thanks, folks. Yes, I can see I'll be an expert on diabetes drugs by the end of 3 months. Its a full time job sometimes, being diabetic.

That's useful info, Fergus, I'll bear that in mind next time I talk to the "experts"...

 

[Sid Bonkers]

Hi carandol I was going to reply to you a bit earlier but didnt as I felt there were just too many variables to consider to offer any constructive advice. Then Anna pm'd me :lol:

She is right in that I have successfully come off insulin treatment and have even cut back on my other medication too but my case is/was slightly different to your own as I started out on insulin and have managed to come off it having gained good control and lost a lot of weight so my story is the reverse of yours really.

All I can say is that if your pancreas is working and producing enough insulin for you to manage with out insulin then there are other options open to you. How much long and short acting insulin are you currently needing to take to control your levels?

I was in two minds when I was told to stop using insulin as I thought I was giving up my safety blanket but I needn't have worried as it has worked out well for me.

I would consider your bg control first and foremost in this decision, will it improve your life or make it worse? You will have less chance of suffering dangerous hypos without insulin depending on the type of oral meds you take but generally the chances of a serious hypo are greatly reduced. But you will also loose the ability to inject more insulin to get high bg levels down should you need to.

You will have less kit to cart about with you and less planning when you go out without insulin but you will need to think more about diet as that is going to be far more important in controlling your bg levels without insulin, obviously the oral meds will help but they will still normally require an element of dietary help if you want good control.

Theres a lot to think about and I think that only you can make that choice one way or the other.

 

[carandol]

Thanks, Sid, for all the info. It's certainly food for thought. My weight is definitely not a problem (my BMI is pretty darned perfect), so that's not something I worry about. I've never had a *really* bad hypo, just a few slightly inconvenient ones, maybe once every six or eight weeks, so again, so that's not something I worry about either. I'm currently taking around 40-48 units of Novorapid a day, split between 3 meals, and 44 units of Lantus before bed.

I've been talking to the diabetes nurse this morning, and her opinion is "You get better control with insulin, with none of the side-effects of tablets, so if you're happy injecting, don't let the specialist bully you into going back to drugs." Which is my current way of thinking, since I really can't afford time off work at the moment to feel grotty while I'm sorting out a new regime. In the longer term, we'll see.