High Tier GAD 65- any concern for neurological syndromes?

Hello!

I was diagnosed with type 1 diabetes a year and a half ago. At diagnosis my GAD was 7,800. My endo asked to measure it and it was again that number.

Due to my GAD being so high, I am very concerned about developing a neurological autoimmune condition as a result of GAD 65. I’ve read high tier of GAD 65 can be associated with stiff person syndrome and a few others.

I have no neurological symptoms, but very concerned. Anyone else been diagnosed with very high GAD antibodies and not have neurological symptoms? Has anybodies endo mention to not be concerned about the high GAD antibodies?

I asked my endocrinologist, but she is out for the week. So I’d love to resources!

thank you so much for your time!

My gad was very high too. However that test was not available when I was diagnosed.
I have eczema which was diagnosed as auto immune. I also have severe allergy to fish.
And tree pollen. I had 2 frozen shoulders at the same time but it was never determined if it was autoimmune driven. So my doctor did the test on me 15years ago and it was very high.
I don’t know the number though.
He told me that high number is why I’m having these other issues.
We also decided for me to stay off statins because statins are known to cause neuropathy in people with high gad.
However I had already tried a few but I had side effects. I never had a cholesterol issue so I’m happy not taking them.

So what I’m saying is , maybe rethink statins if your doctor suggests them. Or at very least talk to him about it.

Since then my gad has jumped around high to low. There is no real sense to it.

I have not had any neurological issues in 33 years of type 1. I’m trying to keep that going

Hi Timothy!

Thank you so much for your response! Out of some of my friends with T1 none of them had as high as GAD as I have. Was yours in the thousands as well? Also, what was the doctors reasoning for putting you on statins? They haven’t suggested it to me!

GAD is so odd and frustrating. I went to a autoimmune specialist last year and my GAD was negative (through a different test) and now it’s back. I wonder if it’s food related causing a flare. Have you noticed any associations like that for you?

It seems to flare up but I don’t know why. Then settles down.
My doctors have been trying to get me on statins my whole life because someone board decided lower cholesterol is necessary for diabetics. My total cholesterol runs in the 150 s usually and I have high HDL(good cholesterol) because I exercise a lot. And normal LDL
So there was never a good reason for me to be on it except it’s a standard practice.
I also never had high blood pressure however they pushed vaso dialators for the same reasons.
I don’t remember that first test but I know I was over 1000 a few years ago. Generally in the low hundreds