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Confused ? I am!

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Mark T

Mark T

Well-Known Member
Relationship to Diabetes
Type 2
Just when you think you have a handle on what?s going on it seems a curve ball gets thrown at you.

Just to put some history in here, I was diagnosed overweight (but not obese) with an HbA1c of 11 last year in my mid 30?s. Because there were several diabetics in my family I had got my GP to do a blood test for diabetes at the same time as he was doing some other blood tests for an infection that winter.

Because of my age and weight, my GP was not sure if I was definitely a Type 2, so I got referred to the consultant.

Over the last year I?ve been tested for antibodies (IAI ?ve; GAD not zero, but not high enough to be T1), for c-peptide (too high to be T1), for MODY (-ve). So I was assuming that I was a Type 2. I?m doing fairly well at the moment on Metformin and a fairly low carb diet (~150g per day).

Therefore I was expecting to be told I?m going to be treated by my GP since the consultant only has T1's and MODY's on his books?

Nope, the consultant has other ideas?

Although I don?t have antibodies, apparently that doesn?t preclude Type 1. His opinion is that eventually they will discover I?m a Type 1 (nope I?m not changing my forum tag just yet!) and that it?s just a matter of time before I?m on insulin. Therefore he wants to keep me on 6 monthly until that happens.

Oh, and my blood test forms now have Thyroid added as a test.

Right now I?d prefer the boring certainty of being a T2 then this ongoing is he/isn?t he :confused:

Part of me wants to prove him wrong of course :D
 
If there are antibodies present that indicate an attack, I suppose you are Type 1..............its just its happening really slowly, slower than previously observed............

Your special......................😉
 
Do you know what your anti-GAD and your c peptide result levels actually were? There is different schools of thought about what levels indicate what is going on, because it wasn't a widely used test until more recently I believe?

Do you know if the consultant wishes to repeat either of the tests above at any point to see if there are any changes?
 
It wouldn't surprise me to hear that you end up being classed as a Type 1 (or more probably 1.5/LADA) Mark, as you sound very much like me in many ways. Although I showed symptoms of diabetes for about two years before I was diagnosed I was never tested at that time, and my consultant believes that my regular running probably kept me sensitive enough to a declining amount of insulin for the symptoms not to become too severe. Then I got a viral infection that knocked me for 6 and the rest is history. It may be that the infection you had around the time of your diagnosis is what raised your HbA1c to diabetic levels.

I also wonder if I followed the stricter diet of a T2 just how little insulin I would need - it has gone down from around 65 units at diagnosis to around 20 units now, with only 5% being basal insulin (usually around 40% is basal).
 
Wow. You'll be getting invited to conferences and placed in a glass cabinet !😱

Must be very frustrating to be told your destiny but without any certainty. I think you need to get him to explain exactly why he thinks it and what his evidence is. And what he plans to do in the meantime other than 'tests'.🙂

Rob
 
lauraw1983 said:
Do you know what your anti-GAD and your c peptide result levels actually were? There is different schools of thought about what levels indicate what is going on, because it wasn't a widely used test until more recently I believe?
Click to expand...
Yes I do, these were from February 2011...
Pancreatic islet cell antibodies: negative
GAD antibodies: 6.2 U/ml

For the anti-GAD, a negative result would be 0-5 U/ml, a positive > 25 U/ml

lauraw1983 said:
Do you know if the consultant wishes to repeat either of the tests above at any point to see if there are any changes?
Click to expand...
I asked him this. Apparently not all Type 1's have those antibodies anyway and they are only seen in the initial onset. So it would be unlikely I would have any now.
 
Yup, GAD65 has to be done within 6 months of onset to 'catch' em.

Some of Joslin's 'old uns' produce 'quite a bit' of C-peptide. Not seen actual amounts defined though it's possible it's there somewhere.

Fascinating isn't it?

I wouldn't complain about getting expert treatment meself - a lot of T2's who probably need it don't get offerred it, so count yourself lucky!
 
Yes, I know I should be happy for the attention 😛 Especially given that Mid-Essex PCT is named in the BBC report as being one of the worst for not doing all the checks.
 
Sorry for sounding ignorant but can you go from a Type 2 - Type 1?
 
Newtothis said:
Sorry for sounding ignorant but can you go from a Type 2 - Type 1?
Click to expand...

No, but you can be misdiagnosed. Also, some people may have characteristics of both Type 1 and Type 2 e.g. insulin resistance and insulin insufficiency.
 
Northerner said:
No, but you can be misdiagnosed. Also, some people may have characteristics of both Type 1 and Type 2 e.g. insulin resistance and insulin insufficiency.
Click to expand...

But if Mark has good HbA1c results and is only on medication - would that not be a Type 2?
 
Newtothis said:
But if Mark has good HbA1c results and is only on medication - would that not be a Type 2?
Click to expand...

It can be difficult to say for sure as a Type 1.5 (slow-onset Type 1) might manage for months or even years on just oral medications before needing insulin. The main thing is that his treatment and regime is appropriate to his needs now, resulting in a good HbA1c, and also that his consultant recognises his case is not clear cut so is continuing to monitor him 🙂
 
Hope it all works out well Mark and you get the treatment you need, sounds as though your consultant is on the ball, but a bit of a shock I expect to get the possibilities.
 
Northerner said:
It can be difficult to say for sure as a Type 1.5 (slow-onset Type 1) might manage for months or even years on just oral medications before needing insulin. The main thing is that his treatment and regime is appropriate to his needs now, resulting in a good HbA1c, and also that his consultant recognises his case is not clear cut so is continuing to monitor him 🙂
Click to expand...

I think I get it..

Hope all goes well Mark and you get definitive news soon xx 🙂
 
🙄

Mark hope it all gets sorted out and you get the right treatment
 
Hey Mark, dont know if I have asked you before but where in Mid Essex are you? I live in Braintree so you cannot be far away.
 
Brendan said:
Hey Mark, dont know if I have asked you before but where in Mid Essex are you? I live in Braintree so you cannot be far away.
Click to expand...
My thread in Events for a proposed get-together might be a give away 😛
 
Thanks everyone for your responses 🙂

I was expecting it to be fairly cut and dried as per what Amanda stated, but obviously the consultant has some doubt and wants to keep an eye.

Personally, I'm more convinced that I'm probably Type 2 and what I'm doing now seems to be working for me. But I'll keep an open mind 🙂
 
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