For those with control issues: anti-insulin antibodies

ok, i was tested for anti-insulin antibodies(not to be confused with insulin antibodies), which came up positive & elevated. which explains a lot for me, why no matter what i do it doesn't work. it's a relief that now i have something i can say to those who think i'm doing something wrong or that i must get a pump. i've had type 1 since 1964, always had big control issues, big high low swings, many hypo events, much passing out & not waking up, seizures, all the good stuff. anyway, i'm down to 3 units of levemir at night, down from 8 in the morning & in the evening, with higher coverage amounts. i'm sure my a1c will be going up, no problem for me, i like waking up in the morning. my endo & i are working to see if we can do anything about that but he says that may not be possible. anyway, if you have control issues like this you may want to ask your dr. about the test, it won't really help anything but it will tell you WHY.

Anti-insulin antibodies are an immune reaction against insulin that is seen as "foreign." It was relatively common with animal insulin, but is seen less frequently with modern analog insulins. Most typically you become (severely) insulin resistant, so I'm not sure why you are dropping your basal levels. Most people with this condition do better with human insulins (Regular and NPH), perhaps you can talk to your endo about trying that.

hi brian, thanks for your reply. now that's what i thought when i looked it up, but, apparently that's insulin antibodies, anti-insulin antibodies are different. they are not particularly associated with insulin resistance, and just kind of 'grab' the insulin molecules & release them whenever. my total insulin intake is usually around 24 units a day, & a miscalculation of a unit or 2 can really knock me out. literally. i'd taken animal insulins till the humalog came out, then nph till my 30's. still had the same issues. then i went from lente, to ultra lente (NIGHTMARE!)to lantus, better but not great, to my current levemir which seems to work best for me. funny how there are just so many things to factor in for all of us. thanks again for your response.

My understanding is that there are insulin antibodies (to foreign insulin) and there are insulin auto antibodies (to your own insulin). There are different tests for the different kinds of immune reactions.

to be honest brian, i'm not too sure on this. obviously in my case it's foreign insulin. however, my endo did say anti-insulin, not insulin antibodies. when i ran it by my pcp he said anti-insulin too. don't know if it's just a semantics issue, in any case does sound like a good reason for what's going on with my control. or lack thereof :)

hi brian, i don't know where he got anti-insulin antibodies, i just got my last labs where & it showed a result for insulin antibodies. that was my initial reaction, i looked it up & saw that it seemed to be associated with insulin resistance which i obviously don't have. anyway back to square 1 for me, i do stand corrected :)

This is probably a good thing to know. I'm sorry it's happening to you but happy you do know why. I think that's important, since it's drilled into us so often that we can control it. I end up turning that against myself and feeling horribly guilty that I don't do a good enough job, which is a whole 'nother set of crappy feelings. You can skip that altogether now! I do hope it's possible to find a way to make your struggles easier, though.

thanks, i have the same guilt having been drilled into me for so long, but it's so unnecessary. have you been tested for them?

Researchers had a blast with this back in the 1980s - and ever since. The simple question was why some people didn't come out of their hypos like others (impaired recovery). It related to the length of time one had had diabetes, and when anti-insulin antibodies were identified and tracked, it then became a question of what interactions were there among anti-insulin antibodies, glucagon, and epinephrine. The longer the diabetes + autonomic neuropathy it was hypothesized the lower the epinephrine secretion and the more retardation of normoglycemia. This is when it was learned impaired glucagon & epinephrine responses to hypoglycemia were acquired defects and this was also related in further research to the dominant gene.
Yes, if tested for those and if elevated, you do have a delayed (apparently to the point of passing out) response to hypos. Take care! I wish you well, and yes, it does help put together a plan of attack on control issues. Keep your target higher than you might wish. Decrease what you plan to give by a unit when the slightest unsure of the carb number and your response. Enough already. Old ladies like me can go on and on.

as can very middle aged ladies like me ;) appreciate the advice, this is actually what my endo has suggested, very wisely compared to all those years of 'keep your a1c down'(my 'but i pass out & have seizures' seeming to go in 1 ear & out the other), thanks & go on & on as much as you like :) liz