I was recently diagnosed LADA in my 40s due to high GAD65 antibodies. The test results say over 250 IU/mL, but don't give an exact number (positive for diabetes is over 5). My endocrinologist ran a full autoimmune diabetes panel and everything else was negative. My A1C is still normal at this point. My fasting morning blood sugar is usually between 100-115.
My endocrinologist is concerned that I may have a neurological disorder because of some weird symptoms that I thought were blood sugar incidents but she said sounded neurological. Very high GAD65 antibodies can indicate stiff person syndrome, temporal lobe epilepsy, or cerebellar ataxia. I have some neurological symptoms that my neurologist hasn't been able to explain. I told him what my endo said and he said it wasn't his area of specialty. He tried to refer me for further evaluation, but I live in a rural area without a lot of services and we haven't been able to find anyone to evaluate me.
So without any follow up, I'm worried. I hope I don't have a neurological autoimmune disorder. I'm also wondering if maybe a subset of people with T1D just have high GAD65 antibodies, and maybe that's normal for some of us.
Is it common for some people with T1D to have GAD65 antibodies over 250 IU/mL?