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Antibody Test Results/Anxiety

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Beth123

Beth123

Member
Relationship to Diabetes
Type 1
Just a quick question, I have so much anxiety since being diagnosed. Not long ago I was given my antibody test results. My GAD was 1210 u/ml and my IA2 was 396.5 u/ml and I'm really worried now because both my Doctor and my Diabetes nurse said it was extremely high. Now I've looked into it and saw that 'Stiff person syndrome' is a thing and I'm paranoid I have it because my GAD is so high. It's making me feel sick with worry did anyone else have GAD antibodys this high? Really need some reassurance!
 
Hi @Beth123 Sorry you’re so anxious. Did your doctor and nurse not say anything else? Stiff Person Syndrome is very rare. If they suspected that, they’d have surely mentioned further tests?

I didn’t have my antibodies tested until years after diagnosis, but I have Type 1 and I have the exact same two antibodies as you - GAD and IA2. I still had antibodies of both more than 20 years after diagnosis, so I imagine they started pretty high. The IA2 one is an antibody to the actual islet cells in the pancreas that make insulin, so I would think that gives important information about the type of auto-immunity.
 
Sorry to hear you are struggling with anxiety @Beth123 :(

GAD antibodies aren’t routinely checked, so not everyone will know what levels of antibodies they may have had circulating at some point. Plus antibodies in T1 can reduce and disappear as beta cell mass reduces - this is one reason why GAD checks aren’t always done, because you can be classically T1, yet test negative for GAD if all your beta cells have already been splatted.

I’m not aware of stiff person syndrome, but over the years I have seen lots of different members with very different experiences of T1 onset, from very dramatic and instantaneous, to a longer gradual build up. I would imagine that this could be directly connected to the level of antibody action they had.
 
Beth123 said:
Just a quick question, I have so much anxiety since being diagnosed. Not long ago I was given my antibody test results. My GAD was 1210 u/ml and my IA2 was 396.5 u/ml and I'm really worried now because both my Doctor and my Diabetes nurse said it was extremely high. Now I've looked into it and saw that 'Stiff person syndrome' is a thing and I'm paranoid I have it because my GAD is so high. It's making me feel sick with worry did anyone else have GAD antibodys this high? Really need some reassurance!
Click to expand...
My GAD was over 2000u/ml . Why don’t you voice your concerns to your diabetic nurse ?
 
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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
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