Hello Everyone

[Superkillie]

I have viewed the site for a fair length of time but never actually signed up before, however having visited the hospital today I was rather taken aback by what was suggested, I'm just curious as to whether anyone has had a similar experience.

Was diagnosed as Type 1 around 15 years ago when I was 14/15 and have been on insulin since then and would say I've never been the best at controlling it not that it's been astronomically high ever, over the passed couple of years however I have got substantially better.

What however confused? me was today when I saw the doctor he started asking some questions about how I was diagnosed, how long ago. He then said that he's not sure that I am necessarily a Type 1 diabetic which I thought would surely of been flagged up by now if that was the case.

So I had some other blood test done which can show apparently whether I myself still produce insulin or not.

I have to say I'll be stunned if suddenly they tell me I can manage it through tablets which was what was said if this test comes back saying what he believes may possibly be the case considering the ratio of insulin to carbs I currently take. And having done it via injections for almost 15 years and been on DAFNE courses and other bits and pieces.

 

[Robin]

Hello Superkillie and welcome to the forum. That must have been a bit gobsmacking! Is it a c-peptide test you've had done? It is becoming increasingly obvious that Diabetes is more of a spectrum, not a black and white Type1 or 2, so full marks to your clinic for thinking about this, and not just saying, OK, fine, carry on with what you're doing. But it must be a bit of a shock to think that just as you've got all the info and the techniques to deal with your diabetes, they may tear up the rule book and start again!

 

[SB2015]

Hi SuperKillie. Welcome to the forum. I am interested in what you have said about your diabetes. I know that recently there have been articles about whether some with Type 1 Diabetes (I had thought that this was determined by the presence of GAD antibodies which are the ones that destroy the Bets cells), do hang on to a few active Beta Cells. I am also on very low doses of insulin and low ratios but had accepted the diagnosis. I know that some on here have a wide variety of experiences so I shall watch the responses to yr question with interest.

 

[Northerner]

Hi Superkillie, welcome to the forum 🙂 I was diagnosed about 8 years ago, but after 4 years I stopped needing basal insulin (I was on lantus), so my pancreas is still producing some insulin, although not enough to cover my food. There is a type of diabetes called MODY (Maturity Onset Diabetes of the Young) which has a strong genetic element to it - do any others in your family have diabetes? This type can sometimes be managed on tablets, although it is not Type 2. It will often progress to requiring insulin, but your pancreas may still produce some.

 

[Superkillie]

Hello Superkillie and welcome to the forum. That must have been a bit gobsmacking! Is it a c-peptide test you've had done? It is becoming increasingly obvious that Diabetes is more of a spectrum, not a black and white Type1 or 2, so full marks to your clinic for thinking about this, and not just saying, OK, fine, carry on with what you're doing. But it must be a bit of a shock to think that just as you've got all the info and the techniques to deal with your diabetes, they may tear up the rule book and start again!

Yup I questioned him for a bit as to what made him believe it for about 5 minutes, and never really gave me a clear answer. What however that I find odd about it which I didn't actually say correctly in the original post is that the amount of insulin I have to use to bring down my sugars is like a 3:1 ratio of Novo Rapid for carbs and has been about that since I was diagnosed and in hospital for 2/3 weeks when I first went in. And I think that was what he referred to the test as (c-peptide). However everything I've looked at online over the last few hours I would say to me still would point to it being type 1 and I don't see how I can go from needing 2 doses of 30 Levemir a day and a 3:1 ratio on carb intake to suddenly managing it with tablets.

 

[Robin]

Ah, that makes sense, I nearly asked if it was a lot of insulin you had to use, not a little. Perhaps your doctor thinks you may have insulin resistance, and would be helped by something like Metformin, as a supplement to your insulin, not o stead of. but allowing your body to use it more efficiently so you don't need so much.

 

[Superkillie]

Ah, that makes sense, I nearly asked if it was a lot of insulin you had to use, not a little. Perhaps your doctor thinks you may have insulin resistance, and would be helped by something like Metformin, as a supplement to your insulin, not o stead of. but allowing your body to use it more efficiently so you don't need so much.

Yeah I take Metformin generally only at the weekend/when I'm off as my stomach is not a fan of it and if I'm working I generally won't take it. The amount of insulin I have taken hasn't really fluctuated much since I was diagnosed, can remember being in the hospital when 1st diagnosed and them questioning whether I'd eaten anything since my first amount was done as the insulin that was given then wasn't near enough to bring my sugars down.

 

[trophywench]

3 units of fast acting to 1u insulin, or 3g carbs to 1u? Whichever, it is a higher amount than many of us, as is the 60u a day of Levemir. So it does look like you ARE insulin resistant to me - but that does not actually mean you are not T1. Resistance is not actually a thing which isolates T2 from T1 at all and any number of T1s worldwide need added Met.

The Metformin won't do anything at all for you taking it like that - it's a medication that needs to build up gradually in your body, and then you have to top it up VERY regularly to kep it at whatever level your body happens to need.

If you have windy oops or worse - then there is a slow-release one that can be prescribed but of course it is more expensive so they always try the ordinary one first. If you told your GP that you are only taking it sporadically because of the side effects, then they will give you the others. However - a lot of folk find if they carry on taking it for a fortnight or more - the gastric effects disappear. But anyway, if it makes life difficult - get the other sort.

GAD antibodies disappear after a short while after diagnosis (a few months) so if you've been diagnosed longer than that it's a waste of time testing for them now! The Joslin Institute in the USA (their centre of diabetes excellence) has a register of 'golden oldies' on their books who they have followed all, or practically all, their lives. So they have people in their 80s and 90s who have been T1 since they were 10 or something - and yet they are still producing some insulin even today. As Northerner said - not enough to be of very much use, but they just DO ! LOL

 

[Superkillie]

Sorry no, 3 units to 10g of carbs. The slow-release insulin was one thing that he did mention yesterday before going off at what seemed like a complete tangent to suddenly say that all of a sudden it could possibly just be done by tablets. Was on it constantly as in every day (metformin) for about 2/3 years when I had a bit more freedom of being in Uni and not also in work and my stomach still acted in a bad way to it.