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changing medication, unsure its what I want

P

Phil5544

Newbie
Messages
4
Hi all, first post here but not new to diabetes unfortunately.
I've been type 2 diagnosed for about 16 years now, I controlled at first with metformin twice a day, then gliclizide and metformine that I really didnt get on with, skirting hypo's permanently, and settled on a regime of eucreas twice a day and a metformine midday, and had good control.
However I was recently involved in a serious car accident, and badly steam burnt during it, 44% of body burnt, lost all the skin from a hand/arm and significant amounts from leg and minor burns all over body, 4 large skin grafts and 5 weeks in a hdu then a week in general to stabilize me.
During the burns treatment, I was fed a very specialist diet and insulin was pumped into me, because it helps the body's healing process and to grow new skin, I just let them get on with it as they are the experts. Ive now mostly healed courtesy of their fantastic treatment, Ive grown skin on my hands and arms and the grafts have all taken and sealed up well and just recovering lost motion in hands and leg with physio, but the diabetes specialist Ive been referred to while on the general ward being stabilized is insisting I stay on insulin injections as the only option.

Now, I have some history with this specialist, previously I saw him about 4 years ago, and he demanded I moved to injecting insulin as after 12 years my pancreas would not be capable of being controlled with tablets as it was too scarred and refused to entertain me continuing to use eucreas and metformin to control my sugar. I actually changed specialist and the new specialist got me on my pre-accident regime of just tablets and good control. However my replacement specialist consultant has now retired through ill health, and he is the only option apparently available in my area.

I exited two weeks ago the general ward and was on 10u novarapid + 40u levimir + 1000mg metformin morning, 14u novorapid midday, and 1000mg metformine + 12u novarapid + 26 levimir in the night with instructions to reduce when I thought needed. Quite scary as I'd only been injecting myself for 3 days total when punted out and left to adjust my own dosage.

I've had to progressively cut that to 28u levimir in the morning, nothing midday, and 10u levimir in the night and no novorapid at all at any time, still taking 1000mg metformine morning and evening, I presume as my skin continues to heal up finally the insulin requirements are still falling. My bg is averaging around the 1Mg/dl or 5.5mmol's the past four days with these latest numbers with good control and in a normal person bg range at the 2hr after eating control points.
While in hospital I lost 16kg and Ive kept that off despite building lost muscles as Ive been on a 1500cal/day diet as prescribed for me. I weigh in at 102kg and measure 6'3 with a heavy build, so overweight still.

What I want to know, without resorting to quietly experimenting on myself with eucreas and stopping insulin if possible is how would that map to my previous treatment of eucreas 1000mg morning and evening, and 1000mg of metformin midday, and if people think thats clinically a option before I walk into the office of mr fixed ideas, he's already told me its impossible to get control with my condition using tablets and I've proved him wrong and I weighed 16kg more then, I cant imagine he's going to back down this time so want to be forearmed.

I personally want to get back on tablets only, my lifestyle doesnt suit at all making regular injections and it vastly affects some things I do (interferes with race + other licenses and insurances etc wheras tablets only don't), and Ive been too close to a hypo far too many times for my own liking the past 14 days already. I'm going to loose some more weight to achieve this but want to gather a feel for what is possible.

So thoughts please...
 
Phil5544 said:
Hi all, first post here but not new to diabetes unfortunately.
I've been type 2 diagnosed for about 16 years now, I controlled at first with metformin twice a day, then gliclizide and metformine that I really didnt get on with, skirting hypo's permanently, and settled on a regime of eucreas twice a day and a metformine midday, and had good control.
However I was recently involved in a serious car accident, and badly steam burnt during it, 44% of body burnt, lost all the skin from a hand/arm and significant amounts from leg and minor burns all over body, 4 large skin grafts and 5 weeks in a hdu then a week in general to stabilize me.
During the burns treatment, I was fed a very specialist diet and insulin was pumped into me, because it helps the body's healing process and to grow new skin, I just let them get on with it as they are the experts. Ive now mostly healed courtesy of their fantastic treatment, Ive grown skin on my hands and arms and the grafts have all taken and sealed up well and just recovering lost motion in hands and leg with physio, but the diabetes specialist Ive been referred to while on the general ward being stabilized is insisting I stay on insulin injections as the only option.

Now, I have some history with this specialist, previously I saw him about 4 years ago, and he demanded I moved to injecting insulin as after 12 years my pancreas would not be capable of being controlled with tablets as it was too scarred and refused to entertain me continuing to use eucreas and metformin to control my sugar. I actually changed specialist and the new specialist got me on my pre-accident regime of just tablets and good control. However my replacement specialist consultant has now retired through ill health, and he is the only option apparently available in my area.

I exited two weeks ago the general ward and was on 10u novarapid + 40u levimir + 1000mg metformin morning, 14u novorapid midday, and 1000mg metformine + 12u novarapid + 26 levimir in the night with instructions to reduce when I thought needed. Quite scary as I'd only been injecting myself for 3 days total when punted out and left to adjust my own dosage.

I've had to progressively cut that to 28u levimir in the morning, nothing midday, and 10u levimir in the night and no novorapid at all at any time, still taking 1000mg metformine morning and evening, I presume as my skin continues to heal up finally the insulin requirements are still falling. My bg is averaging around the 1Mg/dl or 5.5mmol's the past four days with these latest numbers with good control and in a normal person bg range at the 2hr after eating control points.
While in hospital I lost 16kg and Ive kept that off despite building lost muscles as Ive been on a 1500cal/day diet as prescribed for me. I weigh in at 102kg and measure 6'3 with a heavy build, so overweight still.

What I want to know, without resorting to quietly experimenting on myself with eucreas and stopping insulin if possible is how would that map to my previous treatment of eucreas 1000mg morning and evening, and 1000mg of metformin midday, and if people think thats clinically a option before I walk into the office of mr fixed ideas, he's already told me its impossible to get control with my condition using tablets and I've proved him wrong and I weighed 16kg more then, I cant imagine he's going to back down this time so want to be forearmed.

I personally want to get back on tablets only, my lifestyle doesnt suit at all making regular injections and it vastly affects some things I do (interferes with race + other licenses and insurances etc wheras tablets only don't), and Ive been too close to a hypo far too many times for my own liking the past 14 days already. I'm going to loose some more weight to achieve this but want to gather a feel for what is possible.

So thoughts please...
Click to expand...

To be honest, Phil, I appreciate why you could want to achieve what you do, and were your situation not significantly complicated by your ongoing burns treatment ( must have been a real nightmare), I might have made a few suggestions, but I would hate to suggest anything that could harm you or slow up your healing in any way. Whilst your burns may look healed, the healing is likely to be ongoing for some time.

There are members who have managed to get themselves off insulin, but I can't think of anyone still in your probably delicate state.

Whatever you do, please be very careful. I'll be keeping my fingers crossed for you.
 
If I were you, and I am not, I would insist on having a c-peptide test done if you have not already. The question as to whether insulin is needed really depends on whether you are making enough of your own and that is what this test will show. If you are not making enough then you may have little choice other than insulin. If you are making enough then it comes down to diet and what changes you are willing to make. If you have enough insulin production then a low carb diet with or without oral drugs may work. You and your doctor can't make an informed decision without knowing your c-peptide. I have no idea how the burns and your healing fit into the picture.

Please remember that I am just presenting ideas for you to consider and that this is not medical advice, just my opinion.
Good luck to you and welcome to the forum.
 
If you're healing nicely and not adding weight, what's the urgency? Don't be too impatient. Your health needs to come first. Racing etc won't go anywhere. Do all to keep things ticking along nicely. Once 100% fight your cause. We'll happily support you with or without insulin treatment. You don't want more health problems by stressing your busy healing body, do you? Give yourself a little longer?
 
I am being cautious, and I respect the burns specialists and trust their judgement entirely. I know they give insulin to non diabetics for the same reasons in this level of injury and they told me when healed I could probably return to my original regime but it was a decision for the diabetes consultants afterwards. Once you can move and walk and things are stuck in place, they have to move on to the next person in need and leave you in the hands of general nursing, and rightly so.

I am willing to accept staying on the insulin while the last of the internal injuries heal up, but I had this conversation with the diabetes consultant before leaving the general hospital expecting him to give me the same line as the burns unit, namely it was too early to tell but we shall see and was told there was no way back to tablet control, not if I change regime, or a blood test shows my pancreas isnt working I'll have to, just a flat emphatic no its been too long based purely on the time since I was first diagnosed.
I had no blood tests taken apart from finger pricking when on the general ward and I have seen the results from the burns unit and it was mostly concerned with levels of silver nitrate as a side effect of the treatment products, so I don't believe the c-peptide test has already been performed.

I'm quite prepared to make changes and start notifying various bodies of the changes if the evidence says I have to inject insulin for the rest of my life because of islet loss or whatever to accept that, but I want it based on evidence not on the whim of my consultant and a c-peptide test sounds exactly like the evidence to support the decision that needs to be made and to give me some confidence in the process too. I've got a consult with him in two weeks, so Ill do my research now I know what the test is about, thanks.

But yes, in the meantime keep taking the shots, keep on the strict diet and keep improving the level of what activity I do each day. I know its not a quick process. I'm just trying to do what I can to accelerate it. I'm 45, clocks ticking on what my body is still physically capable of and I have lots to do yet!
 
Phil5544 said:
I am being cautious, and I respect the burns specialists and trust their judgement entirely. I know they give insulin to non diabetics for the same reasons in this level of injury and they told me when healed I could probably return to my original regime but it was a decision for the diabetes consultants afterwards. Once you can move and walk and things are stuck in place, they have to move on to the next person in need and leave you in the hands of general nursing, and rightly so.

I am willing to accept staying on the insulin while the last of the internal injuries heal up, but I had this conversation with the diabetes consultant before leaving the general hospital expecting him to give me the same line as the burns unit, namely it was too early to tell but we shall see and was told there was no way back to tablet control, not if I change regime, or a blood test shows my pancreas isnt working I'll have to, just a flat emphatic no its been too long based purely on the time since I was first diagnosed.
I had no blood tests taken apart from finger pricking when on the general ward and I have seen the results from the burns unit and it was mostly concerned with levels of silver nitrate as a side effect of the treatment products, so I don't believe the c-peptide test has already been performed.

I'm quite prepared to make changes and start notifying various bodies of the changes if the evidence says I have to inject insulin for the rest of my life because of islet loss or whatever to accept that, but I want it based on evidence not on the whim of my consultant and a c-peptide test sounds exactly like the evidence to support the decision that needs to be made and to give me some confidence in the process too. I've got a consult with him in two weeks, so Ill do my research now I know what the test is about, thanks.

But yes, in the meantime keep taking the shots, keep on the strict diet and keep improving the level of what activity I do each day. I know its not a quick process. I'm just trying to do what I can to accelerate it. I'm 45, clocks ticking on what my body is still physically capable of and I have lots to do yet!
Click to expand...
This sounds a very positive way to go. And well done so far. You are helping your body to replenish. Water is an excellent healer too.
I'm looking forward to you being 100% and hearing of your next accomplishment. ;)
 
Hi. I'm really sorry to hear of your burns problem. I can only make comments based on someone without your condition and you need to be guided by the experts. I think you do need to ask for interest how the insulin helps with burns long-term; I'm not disagreeing with it but I think we all need to understand what each of our meds does. I agree with @chalup that you need a c-peptide test. GPs tend to just guess and throw different tablets at diabetics and the common themes I have seen on the forum over the years is to give T2s things like gliclazide and insulin without doing a c-peptide test and when they are overweight. The insulin resistance that comes with excess weight will tend to cause the body to have excess insulin and Glic and insulin may not help as they are best when you have low insulin. BTW Eucreas contains Vidaglipin and Metformin yet you were also taking Metformin as well; this sounds odd? Metformin is generally a good drug for all of us as it has various useful effects. Gliptins are of no value when on insulin. Let's hope that you don't need insulin long-term and can revert to tablets together with the right diet; normally low-carb but your burns may need a special diet of course. Good luck.
 
The previous regime evolved over years, I was taking metformin 3 times a day, but it wasnt quite enough and I was at the maximum daily dose so Avandia was used for a while and I got great control on it but then it was withdrawn because of concerns around heart damage so I went through a battery of tests to see if I had been affected and was put on eucreas twice a day to avoid breaching the limit of metformin and I got on fine with it. But I am about 30kg lighter since I last was this interested in altering my medication.
 
Well, update for closure. I went to see the specialist and took my insulin diary with bg readings recorded etc, and he looked at the quantities I was taking and just put me back on my eucreas/metformin regime, but with a prescription for novorapid should i require it to nudge my bg back down. No peptide test undertaken or discussed. So I'm on day 2 and levels are holding in the "normal" range.

I have no intention of using the insulin, so I'm eating to the meter again, and I've got my pre-injection life back although I'm going to once again try and loose 10kg to see if I can get back to just metformin 3 times a day.
Now all I need is the physio to sign off on me driving/riding next week and I'm good apart from some new scars and a bit more life experience.
I was down to 16 levimar/4 rapid in the am, 5u levimar/4 rapid in the evening and nothing in the day on a 1500calorie a day regime, but still eating bread etc. Just for the record.
 
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