I have been trying to get into a trial for people with newly diagnosed type 1. I went and got all the blood tests to see if I qualify and imagine my surprise when the doc told me all of my antibody tests were negative. Two months ago I tested positive for GAD antibodies. The test was <.02 was normal and I was .16. That’s the only antibody test I got and it was used to diagnose me. Here are the results from a blood test last week:
GAD65
1
normal is <20
IA-2ic
0
normal is <5
MIAA
0.009
normal is <0.010
ZNT8
-0.006
normal is <.030
He wants me to have my endo retest.
I am not sure what to think about this. How has my autoimmune attack stopped when I am still producing insulin? If I don’t get a positive antibody test this will disqualify me from the trial. I am extremely confused. Should I be happy that it stopped or is it temporary and it will just start again. After all all the numbers are not 0 so there is a small trace of antibodies, just not enough to be positive. I am growing weary of this rollercoaster.
I was diagnosed long long ago before antibody tests were readily available. No doc has ever, in fact, suggested there’d be anything useful to learn from an antibody test. And in fact I was diagnosed without a blood test at all. Wow, how have things changed in the past half century. When I was being treated for DKA in the hospital they would take blood out of a vein and rush it to the lab and in a few hours they would have some numbers.
This happens. Getting into a trial would be nice but there are also aspects of trials that may not be so good. Like being in the control group and not really wanting to be. So accept what happened. Your treatment by your endo will remain the same and you will emerge ok.
I feel for you Ben. I was one of the many LADAs who were initially misdiagnosed as T2s because nobody bothered to test for T1 - only to get super super sick before being properly diagnosed as T1s. I agree that you should be retested. Ask to be tested for GAD65, 1A-2 - those should be determinative of whether you are T1. Also ask for C-peptide test. This will tell your body is doing in producing its own insulin. I cannot understand why the lab work was so different – who knows what happened. Better just to be retested. A solid diagnosis and well formed plan for diabetes management is far more important than the trial. I wish you the best with all of this. I know what that roller coaster feels like and hope you have reliable information soon.
I was diagnosed April 15th. I currently have pre-diabetec numbers. Bit of DP in the morning, numbers then are 100-125. 2 hour PP’s are usually 100 or less, almost never over 140. Taking 8U of Lantus every night.
I understand you can have type 1 without antibodies present, however I don’t understand how you could have GAD65 antibodies in one test and the next test 2 months later shows normal levels. If the antibodies are evidence of autoimmune attack and you are producing insulin (cpeptide of 2.2 a couple months ago) then I would assume that these would be present until all of your beta cells have been destroyed then they would disappear. Why would they go away before all of my beta cells were killed off?
You are in the few months after diagnosis? Honeymoon period, as it was explained to me, is when a T1 in the months to a few years after diagnosis gets some beta cell activity back, before it is all killed off by the immune system.
Presumably (and this is just a presumption by me) the reason the beta cell activity “comes back” is because the autoimmune response is lessened for a while. And while it’s lessened… wouldn’t that be when the GAD65 antibodies are low?
Again, I’m stringing a bunch of assumptions together above.
In LADA, as I understand it, homeymoon period can be extended for quite some time. My honeymoon “kicked in” about 10 months after diagnosis and lasted only a few weeks where my insulin needs were very minimal before I was back to my same-old insulin doses.
If you’re only taking a few units of lantus at night, I’d count that as “very minimal insulin needs”.
Talking about research studies… Most want T1’s who are NOT in honeymoon. I strongly suspect that if this one study doesn’t want you, there may be some other study that is very interested in T1’s in the honeymoon phase and maybe looking to extend the honeymoon.
