Anyone Else Get Their Anti-SSA in "AI" - Trying to figure out pregnancy risk

[Kris29]

Hi! This is my first post here, so I'll introduce myself really quick. You can totally skip the next two paragraphs if you just want to get to my question! I was first diagnosed less than two years ago, so I'm pretty new to Sjogren's. I just officially joined the forum, but I've been a lurker for a while. It's so nice to read about other people's experiences. I especially appreciate having access to some of the experiences of people who have lived with Sjogren's for decades. I have mild symptoms, but my rheumy has made it clear that she thinks I'm going to start falling apart in the next decade because I was diagnosed relatively young, even though I've read that experiences with Sjogren's are highly individual. (Of course, I know there's a possibility my symptoms will worsen. And I know I need to be aware of the possibility, but I don't think assuming that the worst will definitely happen is helpful for me. I like to think I'll deal with worsening symptoms when I get there and not let their specter ruin my life now.)

My biggest fear with Sjogren's is probably that I won't be able to keep up with my kids as they grow up. (I have a 5-year-old and 2-year-old boy and one on the way.) I had a lot of anxiety when first diagnosed, but I think I'm starting to learn to balance doing everything I can to look after my health with living life normally whenever possible. I feel incredibly lucky that most of the symptoms that led to my diagnosis resolved when I started a strict gluten-free diet. (My celiac testing was all borderline-ish. GI said I officially don't have celiac disease but he wouldn't eat gluten if he were me!)

Anyway - my question is about the AI (antibody index) measurement. I just can't find much information on it. I'm pregnant with my 3rd child (for all intents and purposes my first anti-SSA positive pregnancy), and I've read all the research I can find on congenital heart block. Risk seems closely related to anti-SSA levels as measured with the ELISA test, but all my insurance company will pay for is the LabCorp test that gives an AI result. From what I've been able to find out about this measurement, I know it can't be directly converted to any other type of measurement, but I would love to have some idea if I'm really high or really low or somewhere in between.

And I know that it doesn't make much of a practical difference for our pregnancy plan. It just comforts me to understand the baby's risk as well as I can. My highest result for anti-SSA antibodies was 4 AI with a reference range of 0 to 0.9. Did anyone else have this type of testing or have any idea what kind of positive result this is? (My maternal fetal medicine specialist who I was working with briefly before a miscarriage last year tried to push my insurance company for the ELISA test so that we had a better idea of my risk, but negotiations weren't going well and were obviously given up when I miscarried, so I don't have high hopes for a different test this pregnancy.)

I'm really grateful for any input and am looking forward to being part of this community!