Need some context: insulin antibodies

long story short: tested for insulin antibodies, level of 4.8. nurse who delivered results said a level of .4 is considered “normal” for diabetics.

neither she, nor the primary who called shortly thereafter, have the slightest idea how “bad” a level of 12x the norm actually is, and they told me as much. appt w/endo isnt for another 7wks.

can somebody please give me some context for this result, some sort of bigger picture within which i can place my readings?

thanks :v)

I’ve had insulin antibodies show up, higher than normal. Much higher, although I don’t know precisely what they were. Your doctor will probably want to change the type of insulin you are on- I switched from Humalog to Apidra for this reason.

thanks, i just need to get an idea of how high is high. as for switching types, thats part of the longer story, and no, that didnt help. already been the apidra route, no dice.

What type of symptoms are you having from the insulin?

Is this the first GAD test you’ve had? Wondering if a previous one was done for comparison. Any particular reason this was done now?

Wish I could recall what mine was, but it was very high. Think it was higher than yours. I just figured it was part of being Type 1 & never gave it much more thought. Very low C-peptide, high GAD antibodies–what else is new?

Can you call your endo for clarification?

i am trying my best to keep this thread very strictly on-topic, for a variety of reasons, most of which i’d like to not get into here. symptoms, possible resolve, all of that is really not any of my concern (or rather it might be, but it’ll turn this thread into a 57-pronged unfollowable discussion, which i do not need).

please folks, do not take this the wrong way, i dont mean it to sound quite as “shut up” as i’m certain it reads (and my apologies for that), but at the same time, i kinda do. the much bigger picture here is more confusing/confused than a barrel full of glue-huffing monkeys drinking absinthe, so please, just go with me on this…

no doctor around here makes or takes any calls unless they were the ones ordering the tests, and as noted, the doctor that ordered admits he knows nothing about this stuff aside from positive or negative. so, no, there will be no answers or any clarification for 7wks, short of those given here.

What exactly are you looking for that you think we can tell you? Many, probably most Type 1s have high levels of insulin antibodies. It doesn’t mean the insulin stops working altogether. You just need to integrate the effects of the antibodies (insulin resistance, pump infusion site irritation) into determining your baseline and go from there. You said you already switched insulin once- I don’t know that there is anything else you can do. Your body will produce antibodies to any type of insulin because you are a Type 1 with a serious autoimmune disorder. Sorry.

what i’m looking for is a response akin to: “my last results were 2.1 and my endo said that while that was high, its nothing particularly noteworthy.”

or, “my last reading was 3.5, and my doctor said that that is through the roof, he’s never heard of higher than 2.5”

12 is a high score, unless you are talking about football. 100 is a high score, unless you are talking Space Invaders.

i dont know what a truly high score is in antibody readings. i’m hoping somebody can help with that, in giving some numbers to compare to, and their endo’s verbal reaction to those numbers.

I understand why you want to quantify your results, but honestly, your best bet would be to get your lab’s reference range, and the opinion of your doctor who is familiar with that specific lab. Like many other lab test comparisons (c-peptide for example) everyone’s lab reference ranges are significantly different. Also, both the specific unit of measurement and the testing array, make a huge difference.and because of this, comparing results are pretty meaningless.

again, the doctor – one who may or may not have any more answers come appt time – is seven weeks out, and getting an answer prior to that is not going to happen. the endo who i will see had nothing at all to do with the testing, so its not like by default he would know any more about a specific lab/etc.

the doctor who ordered the testing, and has a lab collection office in his office could not tell me anything, except positive; his affiliation with the lab netted nil in terms of information and/or score context.

as for comparing test results, id simply rather have any info in front of me and decide its worth, rather than have nothing else in front of me.

Understood, but I would at least specify your results so that others know what to post. 4.8 what?

Another quick question. Would knowing how high change your outcome? Would something be different if it were really high versus high? Just curious. Hope you get what it is you are looking for.

well, we could look at it the other way, and say “if the results would change nothing, is there any real reason for the test itself?”

as for 4.8 what, i dont even know — as theres no reason for the PCP to be informed as to the importance/definitions/standards of anything he tested for, do you think i’ve been informed of anything other than a number, a number which is truly useless with no context to place it in?