Brittle type 1, possible antibodies?

i recently started working with a great endo(we speak EVERY day!)who is kind of mystified by some of my readings, we've cut my levemir in half to 4 & 4, coverage from 2 to 6(carbs from 1-12 to 1-15). i'm very cooperative, measure stuff etc., he suggested i may have insulin antibodies which i'd never heard of. i looked it up, & although it seems to be associated with insulin resistance which i obviously don't have, it would explain a lot for me. not much i can do but getting up at 6 to test has been very helpful. wish i could get a cgm!!! just venting, it's like i can try as hard as i want & nothing i can really do. although trying is always better than not trying. sigh, just had some cherries for a post breakfast 37, at least i didn't lose the day.

Have you had your Type clarified. Antibodies are used to measure Type. They are not associated with insulin resistance; quite the opposite they are associated with Type 1 which is characterized by insulin deficiency. He should do a full panel of antibodies as well as a c-peptide to clarify your Type.

Ok, you need to explain this: "I just had some cherries for a post breakfast 37". 37 is way too low. You should treat it with a more precise dose of pure glucose; do get yourself a bottle of glucose tablets then determine how many you need to take to take to raise your blood sugar (trial and error, keep good records when you have a low). If you are having frequent lows you should tweak your insulin doses. I highly suggest you get the book Using Insulin by John Walsh so you can learn how to tweak your own doses to get in range numbers. It's a lot more important to become knowledgeable about your own D than talking to a doctor every day (especially one who says he's mystified or uses outdated terms like "brittle".) Sorry for being so blunt, it's early for me.

hi zoey, no worries about bluntness. i've been diabetic since 1964, so i'm pretty sure it's t1. i use the term brittle(i am really old school :)), he didn't. i know how to adjust dosage, i just got to the point where i didn't care anymore last year & things just got completely out of control. the antibodies come into play for latching onto the insulin i take, letting it go whenever which makes all the carb counting & dosage adjusting kind of moot. but, i still plan to do what i can, he aaid he may test me for the antibodies, although there is really nothing that can be done about that. i think he said that some of my readings should not have been where they were, especially the lows. i met with him for the 1st time last week, we've cut my levemir in half which has helped, but, the coverage is what gets tricky. the antibodies would really explain the 'brittleness', what is the current term for that, seriously? i definitely want to get as much help as i can, i appreciate your thoughts, i hope you have a great day, liz

Thanks for the explanation, Liz. I apologize for thinking you were newly diagnosed. I'm only familiar with the term antibodies as relates to diagnosing Type 1. As for brittleness, it isn't so much that the term is outdated as the concept. There are some people who seem to work really hard at managing their D and still have wildly varying results; it seems to be a continuum of those people at one end and those people who easily stay very stable, with most of us in the middle. But since that term was used more commonly we have developed such better management knowledge and tools that most people can use these to get things more in line. Speaking of which have you considered a pump?

You've had this a decade longer than me - I see you're close to 50 years so congratulations on that!

It doesn't sound like insulin antibodies to me since you are so insulin sensitive. On the other hand you should ask your Dr. about gastroparesis; this can cause variable digestion and sounds like what you're experiencing. There are various ways to test for and improve this condition if you find that's what you have.

zoe, we don't know each other, no need for an apology! i have seriously considered a pump, & feel that between the expense & the lifestyle changes it's just not for me. i might consider it as a last resort if things don't get better though. really really wish i could get a cgm, there is no coverage for that & i just can't afford it out of pocket. i'll just keep taking it a day at a time, do the best i can & will see how things go. thanks again for your input :)

i've heard of gastroparesis, i don't think i have it since the only symptom i have is the hypoglycemia. wish i had the weight loss :) not the condition though. weight loss is not that high on my priority list right now, i hope to be able to get to it soon. i will be seeing him next month, will mention it if we haven't come up with anything else. i appreciate your response though, any input is a good thing. always good to hear from a fellow longtime diabetic. thanks for the congrats & back at ya, liz

Gastroparesis can vary depending on how much it's "flaring" up. I have it I'd say occasionally, and right now, even though I have an a1c of 5.5, it's for me flaring up. I don't always get the nausea and vomiting, but for me I can tell Im about to get a flare up, when I can eat, be at say 98, dose for what Im eating, and eat, and I just PLUMMET from no where, and NOTHING will bring it back up quickly. But a pump is a life saver in a lot of ways, when I have symptoms that Im acting up, I just do a dual wave bolus, and split it over an hour time frame, and it works wonderfully for me, and just eat VERY little. Literally about 3 days I was running on basal alone, and having 4 glucerna shakes a day. NO weight loss either.

thanks for sharing christy, again, i will be mentioning that to the dr., i can relate to those 'plummets from nowhere' :) although that is much better for me on levemir than lantus, my main problem with levemir has been in the morning but i seem to be doing better when i get up at 6 & check myself.

Sometimes we can develop an immune reaction to non-human insulin. All the modern analog insulin's, including Levemir and Novolog/Humalog are non-human. Our bodies can generate an immune response, generating antibodies to attach the foreign insulin. These antibodies are called anti-insulin antibodies. This is different than anti insulin Auto antibodies that are a marker for T1. There is a test for anti-insulin antibodies. If you are generating a lot of these antibodies, they will deactivate your insulin and the result will be insulin resistance.

But I have to tell you, taking 8 units of Levemir a day and have in ICR of 12-15 does not indicate insulin resistance. Unless you weigh 50 lbs, that indicates you are actually insulin sensitive. If you took 200 units /day, then you might worry about insulin resistance.

Personally, I hate the term brittle. It implies that your blood sugar swings wildly in an uncontrollable manner and without explanation. And it carries a stigma, that you are not doing a good job of controlling your diabetes. You may well be having wild swings. It is entirely possible that you have gastroparesis as others have suggested. But I actually believe our blood sugar always swings for a reason, even if we don't as yet understand the reason. And gastroparesis can slow your stomach from emptying properly and hence you bolus for a meal and the meal is delayed getting digested, and blammo you have a hypo. And then whey your good finally moves, you go high, 2, 3 or even 5-6 hours later. This can lead you to believe you are insulin resistant, but your aren't.

Dr. Bernstein recommends the use of the R-R interval study for diagnosis of gastroparesis. The vagus nerve controls a bunch of things, including your heart and digestion and when the nerve becomes damaged over time, you get gastroparesis. The R-R interval study simply looks at your heart rate difference between inhaling and exhaling. According to Bernstein in Diabetes Solution, "If, during an R-R study, your heart rate varies only 28 percent between inhaling and exhaling, then you will likely have mild gastroparesis. If the variation is about 20 percent, gastroparesis will probably be what I call moderate, and if less than 15 percent, I would call it severe." The R-R study can actually be performed by any doctor (including your GP) who has an ECG machine.

thanks brian, very informative. i definitely realize i am insulin sensitive, what i had read was that anti-insulin antibodies are usually associated with insulin resistance which i don't have. my doctor thinks i may have them due to their hold & release properties. however, gastroparesis is something to be considered, sorry if my language bothers you but i do go back to beef & pork insulin :) thanks again!

I am not bothered, but I am bothered when people try to "label" me. The term brittle (or labile) diabetes was historically used to describe people who had wide swings and it was often associated with the belief that the patient was too dumb to take care of themselves, that they suffered from psychological problems or they just didn't care. I don't believe any of that about you. And that is why I hate the term brittle

thanks brian, appreciate the support :) i feel like if someone wants to label me, that's their problem. i have actually seen posts along the lines of 'get a pump & check your sugar' etc., not my problem.

Yes, very informative, Brian (as always!). I appreciate the explanation of "anti-insulin antibodies" as I'd never heard of those, only autoimmune antibodies which define Type 1, so I was confused. I also think you explained the problem with the term "brittle" better than I did!

You very lucky I would only see my endo about every 4-6 mths and I thought that not too bad i only need about 10 -20 min sessions he pretty knoeledgeable just checat takes neesles it had to me thk numers of bgr and then print bllod tests to check my salt level etc although at first i
didnt get why did i have to take needles now it dosnt hurt just vever worn a bikini since

We'd really enjoy hearing what you have to say, Naz, it might help if you Spell Check it because it's nearly impossible to understand!

Is there a spellchecker built into this site, that I haven't discovered yet?

There is no spell checker that is part of tuDiabetes, but some browsers have a spell check function built in (i.e. Firefox).

guessing naz is recently dx'd, is getting bruising from injecting & is in pretty good control. sorry about the bikini issue naz :) i know i am very lucky to have a doctor that will take the time to really try to help me, i really need the help though, didn't get up till noon(sugar 44)today, even though i got up & ate breakfast at 6(sugar 56), set the alarm for 8 then 9. didn't have anything i really needed to do today fortunately. doctor will call in an hour or 2 today, should be interesting.

Hello there, Baby Peanut. Like your name. I noticed what you were saying about the brittle thing and I can relate.

Have you had your thyroid checked?

My story is pretty long, but after a lot of other things that did not seem to apply appropriately, it is possible that a really smart doc has found my problem to be focused around thyroid dysfunction.

Hope it helps you!