So my endo told me today that I am antibody negative. This was kind of just in passing as we were discussing other things, so I didn't ask what that might mean.
When I got home I looked up antibody negative type 1 and all I could find for certain is that 3% of type 1's are antibody negative...when first diagnosed.
My question is, what exactly does that mean?
I've been type 1 for 27 years and this is the first I've heard that I am antibody negative.
I kind of understand what the antibody deal is, but what's the deal with being negative? I am confused, can someone give me the "for idiots" version of an explanation?
I’ve always thought that the antibodies can go away over time, though I really have no idea. I went through a thing in my early 20s where I was convinced I was only diagnosed type 1 because I was white (my much fitter roommate in the hospital was type 2 and black even though we were both 13) But I was assured by my mother that “they ran those tests” and there was no question even though no one has run “those tests” since then (to my knowledge). So I have to assume that at diagnoses tests are more important than later tests.
Tl;dr I don’t think it really means anything in your case though I can’t cite anything to support that.
You were not tested for antibodies when first diagnosed because antibody testing was not used at that time. And my understanding is that significantly more than 3% of T1s test negative for all three primary antibodies and as Amy points out as you lose beta-cells there is nothing for an autoimmune attack to actually attack so the antibody levels drop and perhaps for some the autoimmune reaction is gone even if the damage is done.
Thanks guys, that makes sense. I have no idea why my doctor would run that test on me now, though, except that maybe it's because I am a new patient to their office and they just wanted the test for their records? Or maybe to check and see if I still have cells, insulin production?
I think the antibodies decrease over time, I'm not sure what the causes are, but the auto-immune attack doesn't stop from what I have read about what we know currently. It seems the body keeps trying to produce new beta cells.
People with longterm type 1 still have some tiny c peptide production. I participated in Dr. Faustman's research donating blood, one of the things they tested for other than small c peptide levels is to see if you have specific T cells which are attacking the beta cells, I had them. You had to have that to possibly participate in the next trial as well as some other factors.
This is also the reason encapsulated beta cells may eventually be some type of "cure" because it would protect the new beta cells against a continual attack and there would also be no need for anti-rejection drugs. I also wonder if since they are not your cells if they would also not be recognized as something to attack.
I don't know why they would run it either, maybe just to see if you did have them after longterm type 1. I had one done which was positive when I was in dka in the hospital. I have the same doctor now.
This was my understanding of Type 1, too: that beta cells are continually being re-generated but are being killed off just as quickly by the ongoing autoimmune attack. My understanding is that this is why many Type 1s produce a very small amount of insulin (like too small an amount to be measured using standard c-peptide tests) even long after they are diagnosed.
I have never been tested for antibodies or c-peptide, but I'd find both of these interesting and hope I'd get to see the results if I ever took part in a study.
My c-peptide is considered "out of range" at <0.10. I have no idea what it is supposed to be. Thanks for your information, I am starting to understand all of this much better.
Mine was <.17 I think in the hospital, then it went up a bit on Dr. Faustman's test, done at a lab that can test for very low levels, and I had another done by my endo again when I was having hypos that suggested more insulin production but it was lower then, now at .1 also that time. I agree with Melitta, I'm not sure why they would do antibody testing now if it's not part of study or something like that.
Mine too, Jen. I was not given the other results except for the c peptide level due to it being a study, however I was told I wasn't eliminated so I did have the t cell and other requirements to participate if chosen. I would really like to see all the results too at some point if possible.
I tested negative for Beta Cell antibodies - but that was the only test about 22 years ago. Later on I was more curious than anything - so I had testing done and I have high antibodies to my own insulin - thus my beta cells might want to produce the insulin and are capable - but the insulin is not welcome. My C-peptide was less than .1. I had the testing done mostly because I can point to the test as a definitive indicator of type one. I have had some primary doctors incorrectly think I have type 2 because I was diagnosed in my early 30s....the test shuts them up! LOL
So techically - I was probably in your boat - of being antibody negative at one point.
I tested positive for antibodies. C-Peptide was <0.2 and the reference range was 0.8-3.1 Not sure if you can use my reference range to use against yours.
