am i type 1 or 2 aint got a clue

I'll bump your post up in the hope that someone who has been a similar situation has some answers for you.

NOt personally, but there are peopl on teh board who are LADA or MODY...which I think may be worth considering?

Good luck!

Hiya!

Do you know why your new nurse believes you are Type 2? They frequently get it wrong.

Do you know what tests they are doing? I suspect they are doing a GAD antibody test (among other things). If the find the antibodies present in your blood, they will know you have an autoimmune type of diabetes (Type 1 or some similar variant) - if they don't find the antibodies, they will probably plump for Type 2 (although not all Type 1s have the antibodies, so it's not conclusive).

As Sugar2 says, some of us have a condition called LADA. This is an autoimmune condition where the antibodies attack the pancreas beta cells and eventually kill them all off. While the beta cells are still working, we produce some insulin (and are therefore not Type 1 as they produce no insulin). However, we might not produce enough insulin and the production of insulin diminishes over time. Those with LADA usually need insulin within 4 years of diagnosis. Although it's a variant of Type 1 diabetes, LADA can exhibit some traits of Type 2 diabetes. In particular, some LADA people are insulin resistant like many Type 2s - which could explain why you're on metformin as well as insulin. However, I don't know enough about metformin to comment on that.

However it turns out, at least you'll know what type you have and can then start making sure you get the appropriate treatment - so that's a good first step. Let us know when you have your results and what treatment you are offered, as people on this forum will probably be able to give you appropriate advice then. As for negligence, so many of us seem to have been misdiagnosed that I think there is just widespread ignorance of diabetes among the medical profession - even among some consultants.

Good luck and let us know how you get on.

Smidge

Hi there i was diagnosed type1 in feb2011 and by may they took me off insulin and told me to monitor my bs.Since then i have asked if dn if she has any clue what type i am and she just says time will tell.So i know how your feeling its the not knowing thats stressing me out.At the moment im eating whatever i want and get the occasional reading of 9.0 after meals but most of the time they stay around 5 or 6 sry i cant help you with any info but just letting you know i know how you feel.
good luck
lee

Hi Alastair and Lee,

Not sure if you're aware, but sometimes when you start on insulin, it kick starts your pancreas into producing more of its own insulin for a while. This happened to me and for the first three months on insulin I only needed to inject every three days or so. It was bizarre! I still don't always need my basal and could go several days without it before my background BG starts to rise. I guess taking the insulin gives your overworked pancreas some help an a bit of a rest and helps it get going again. Some people have reported this lasting for up to a year, but I think it's usually only a few months. I'm not sure if this is the case for other forms of diabetes, but it certainly is for LADA.

Some consultants believe LADA patients should be put immediately onto insulin as there is growing evidence that it preserves the beta cells and prolongs the body's natural insulin production. So basically, they are starting to believe that going onto insulin early after diagnosis with LADA prolongs the progression into Type1. This might explain either or both of your situations. Although as I said in my previous post, there is a lot of misdiagnosis and either or both of you might have been misdiagnosed.

Smidge

hi smidge i am aware of honeymoon period and maybe this could be case for me or alistair but you never know do you.While im off insulin theres always hope i just looked at my diary and its 1 month now since i had insulin and have been feeling better so guess i wiil enjoy things for now and as dn says time will tell.
all the best
lee

I spent a couple of years on metformin and differnt gliclazides, while everyone thought I was type 2 - once an endoc confirmed GAD antibodies, it was obvious i was a slow onset type 1. I could have stayed on metformin a few more years but i went onto insulin. Coming off those oral meds, i have never felt better. They are not good for your health. If you are type 2, work on your insulin resistnce by living a healthier lifestyle. If you're type 1 (if they find antibodies) come off the oral meds and stay on insulin, you'll be better in the long run.
I also find I have much better control using insulin than oral meds. Best of luck - I know how you feel with all the confusion, but once you know where you are you can get on with your life.

smidge said:

Hi Alastair and Lee,

Not sure if you're aware, but sometimes when you start on insulin, it kick starts your pancreas into producing more of its own insulin for a while. This happened to me and for the first three months on insulin I only needed to inject every three days or so. It was bizarre! I still don't always need my basal and could go several days without it before my background BG starts to rise. I guess taking the insulin gives your overworked pancreas some help an a bit of a rest and helps it get going again. Some people have reported this lasting for up to a year, but I think it's usually only a few months. I'm not sure if this is the case for other forms of diabetes, but it certainly is for LADA.

Some consultants believe LADA patients should be put immediately onto insulin as there is growing evidence that it preserves the beta cells and prolongs the body's natural insulin production. So basically, they are starting to believe that going onto insulin early after diagnosis with LADA prolongs the progression into Type1. This might explain either or both of your situations. Although as I said in my previous post, there is a lot of misdiagnosis and either or both of you might have been misdiagnosed.

Smidge

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Hiya smidge, I have been told exactly the same as you mention above, about giving my poor pancreas a break, hence the victoza/levemir combo, however my BS havent come down enough and a LADA test was mentioned last time I saw the consultant, Have been 6 months like this now with continuos errattic BS levels am tiny in frame too. Was told am insulin deficient in april and my beta cells not regenerating, this fits hand in glove with what you speak of above, I am seeing my new DSN tomorrow so am both relieved yet wondering what they will suggest?? Anna.x

Hi Anna!

Push for the GAD antibody test. They should probably do a C-Peptide test aswell as this shows if you are still producing insulin. A fasting insulin test would also help to rule out Type 2. It certainly sounds like you might be LADA. If you are, it would be worth considering gooing straight onto insulin - make sure you get the rapid acting one to take with your meals - with LADA it is the after meal BG that is particularly difficult to control. (They put me on basal only at first, but my own basal is still pretty much intact, it is the after food insulin I don't seem to produce). As you are slim, it is unlikely that oral medication etc will work for you for very long, because you probably have very little insulin resistance. When I eventually got the right insulin, it was such a relief - I was actually able to eat without my BGs going into double-figures. I have the odd hypo now, because my pancreas seems to have good days and bad days which makes BG control pretty interesting, but going onto insulin was the best thing I've done! Having LADA but being treated as Type 2 is miserable and demoralising - I spent a year like it and felt ill the whole time. It is really important that you get a proper diagnosis so you can get appropriate treatment. Good luck tomorrow. Let us know how you go.

Smidge

Hi there,

F,35y/o. I was diagnosed as T1 10 months ago, and have been enjoying a sweet honey moon period. Couple of months ago my nurse was surprised at my using less and less lantus and humalog and asked for some tests. It concluded that I have NO antibodies, but also my C-peptides are very low which doesn't make me type 2 neither T1. They have told me I might be LADA, or Type 1.5.

Usually for LADA you should be positive in antibodies ( which excludes you as T2) and have low c-peptides. I am saying this cause even that is not my case I have still been put within that drawer.

I will start on monday on Gliclazide, as well as keeping Lantus-6. I see a massive improvement on my BG control if I exercise for 20-30 minutes a day. My HbA1c is 6.3 now.

I am reserching a lot on LADA, though it all feels pretty confusing.

Good luck with your results, let us know if you're LADA, I will share my research with you- though I was diagnosed 3 days ago!...hapy to get info if you have any about this!

best of lucks,

Hi Mishigato!

Not sure if you've understood LADA properly? It is a form of Type 1 diabetes - it is a slow onset type and is sometimes called Type 1.5. It is generally diagnosed via a GAD antibody test. However, the problem is that while testing positive for GAD antibodies means you have the autoimmune form of diabetes, testing negative is inconclusive - it does not rule out LADA. Now, if you are being put in the LADA box, Gliclazide is probably not the best choice of drug. Gliclazide works by making your pancreas work harder to try to prouce more insulin. In LADA this can be counterproductive because your beta cells are dying - making your pancreas work harder is believed to speed up the progression into full Type 1. MODY, which is a genetic form of diabetes, is sometimes controlled very well by Gliclazide. Both LADA and MODY are referred to as Type 1.5, but they are very different forms of diabetes and should be treated differently. I have LADA and was put on Gliclazide for a short while before my proper diagnosis (they misdiagnosed me as Type 2), but the consultant took me off it very quickly once LADA was diagnosed. So I would advise you to question whether they really believe you are LADA and, if so, question the choice of Gliclazide. Google Gliclazide to get a better idea of how it works and why it might not be appropriate for LADA.

Good luck

Smidge

Hi Smidge just noticed this post is still going on so thought i would give you update.I am just coming up to 6 months without insulin and my bs seems to be getting better and better normally around 5 or 6.But sometimes i can still go as low as 3.5 i can tell when this happens (light headed weak).I eat sensibly but definitely not a low carber.Doctor has just said to make most of honeymoon period he is still convinced im type 1 cause i had ketones when diagnosed.
all the best
lee

Hey there!

Glad you're off the insulin and stable. I'd still push for answers if I were you!

Smidge

2808myles said:

Long time not posting,was in hospital with severe stomach pains and BM's 20/30 for the last
few months.I'm now on 1000mg of Metformin,morning and teatime, 160mg Gliclazide, morning and tea time, 15 mls of Humulin 1 in the morning. Iv'e been taking this since Tuesday this week and my BM's are between 15 in morning to 20 at bed time, can any one help, I was on Novomix 30 and Metformin for about 8 years, then was told my BM's were to tight and took off Insulin, was on Metformin,and Gliclazide till last week, I'm at a loss as help!.

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Hi 2808. What exactly does "then was told my BM's were to tight" mean. Tight BGL control is typically a good thing, not a bad one. If your levels were a little low (and tight) then all that needed to be done was to slightly decrease your Novomix dosage. I know I'm out of line saying this, but I gotta say it, to me it sounds like your HCPs are trying to make you sick!

Is this a cost saving measure? We seem to hear a lot of cases where people are getting taken off insulin and put on metformin/glicazide these days, often with not so good results. The latter is generally a lower cost in terms of the medication itself, but if BGL control is poor and other complications arise then maybe a bit of false economy.