Help! Type 1 for 16years-antibodies negative!

[marie85]

Hi all, I’m not sure if this is the right place to post this. Anyhow-I was diagnosed at 18yrs old with Type 1, I’m now 35 and changed diabetes service recently. My new endo couldn’t find evidence of antibodies being tested (I was diagnosed in a different country) and said it would be good to find out a bit more about my diabetes so she ran anti Gad, anti IA2A and anti ZNT8 antibody tests. I’ve just been told the results are all negative and I just don’t know what to think!!??? I haven’t been back to her, my appt isn’t for another month or two and I’m wondering does this mean I don’t have type 1?? Anyone similar experiences?? My endo did say something in passing there might be no antibodies with having it for so many years. Is this true?? Something I thought I’ve always had might be something else? I’m trying not to get upset so I’d love to hear what others thoughts are on it because I don’t know that much about it. I think at initial diagnosis back then they might have tested for c-peptide but I’d need to request my old notes. Thank you in advance

 

[Yaya10_10]

Hi @marie85, yes similar here.

The antibodies is negative and I am thin so that do not know which type of D I have.

TBH, I do nor bother myself by which type of D I have as it would not make any difference ( for me)

I use multiple injections to manage bg and at the end of the day you either need to control it by insulin or med or exercise (that what really matters to me).

Good luck

 

[Rokaab]

My endo did say something in passing there might be no antibodies with having it for so many years. Is this true??

Well it does kind of make sense, comparing it to my gluten-intolerance for instance (which is another immune system disease), I create gluten antibodies when I eat gluten as they are created to fight the gluten, but when I don't eat any gluten I don't have said antibodies (and my immune system can concentrate on other stuff) as they are just not needed, the same could well apply to the T1 antibodies they are checking for as there isn't anything left to fight after such a long time

 

[Seacrow]

This is what is expected for a type one. 16 years ago you had an auto-immune reaction that killed off all your insulin-producing cells. Once all these cells are dead, there is nothing left to cause this reaction and no more antibodies are produced. Your test results mean your body is no longer attacking your pancreas, but unfortunately all the insulin producing cells are already dead, so you are diabetic.

 

[jonathan183]

I believe the antibodies test is less reliable a significant period after diagnosis. The antibodies may or may not still be present in sufficient numbers to be considered high depending on what has triggered them. C-peptide would still be a useful test at this point to confirm insulin production is low/non-existent.

There is also the possibility that antibodies are present which are relevant but are not detected as part of current tests. If you still had high relevant antibodies that would suggest something is still triggering the immune system, but that does not appear to be relevant for your case.

 

[marie85]

Thanks everyone for your input!

 

[Daibell]

Hi. Yes, after that time a GAD test will no longer show antibodies. The C-Peptide test is more useful overall to help define T1.

 

[marie85]

Hi. Yes, after that time a GAD test will no longer show antibodies. The C-Peptide test is more useful overall to help define T1.

Thanks for the reply. Is a c-peptide still useful so many years after diagnosis?

 

[Rokaab]

Thanks for the reply. Is a c-peptide still useful so many years after diagnosis?

Well it shows how much insulin you are producing, so should be relevant, I would expect mine to show zero (or close enough that it made no difference) - a non-T1 would certainly not be zero

 

[marie85]

Well it shows how much insulin you are producing, so should be relevant, I would expect mine to show zero (or close enough that it made no difference) - a non-T1 would certainly not be zero

And if the c-peptide is not zero/very low? Does that change the diagnosis of Type1 from years ago? Thanks

 

[Rokaab]

And if the c-peptide is not zero/very low? Does that change the diagnosis of Type1 from years ago? Thanks

I would imagine if you are producing normal amounts or large amounts then they'd definitely look into it and may change it but obviously I'm guessing here

 

[Fenn]

Hi, if it helps, my GAD was negative, C-Pep 0.05 which is apparently very low so I was diagnosed T1, no idea how correct that is, I do wonder if they even know what they are doing sometimes but hey ho

 

[Seacrow]

And if the c-peptide is not zero/very low? Does that change the diagnosis of Type1 from years ago? Thanks

There are a few cases where people have had zero insulin production, been diagnosed as type one, then years later have been found to have some insulin production. I'm one of them, at diagnosis GAD was high, c-pep below detection, and now GAD is zero, c-pep low end of normal. This confuses at least 90% of doctors, and my GP refuses to handle my diabetes - it's too complicated!
The general opinion is I was type one at diagnosis and either this is a 15 year long honeymoon, or somehow some of my insulin producing cells survived the immune reaction.

 

[Seacrow]

Hi, if it helps, my GAD was negative, C-Pep 0.05 which is apparently very low so I was diagnosed T1, no idea how correct that is, I do wonder if they even know what they are doing sometimes but hey ho

The results mean you aren't producing enough insulin. Unless you have been type two for years and worn out your pancreas, it's likely to be an autoimmune reaction. GAD aren't the only type of antibodies, they're just the most common and frequently tested for. If you have been type two and taken any of the 'pancreas encouraging ' drugs it's thought these may speed up the pancreatic demise.
If your medical team are equating 'needing insulin' with 'type one' this is a really old fashioned point of view.

 

[Fenn]

5.5 years treated as T2 with orals and VLCHF

Zero pancreas stimulants

Been a T2 on insul8n for 2 or 3 years

CPep result is why the endo consult has changed my diagnosis, nothing to do with the insulin *shrug*