Brittle Diabetes

I’ve always thought of this as one of those outdated terms from my parents’ or grandparents’ generation - like calling diabetes “having the sugar.” Is it a valid medical diagnosis? What does it mean? Under what circumstances is a type 1 labeled “brittle?” Or is it just a loose label meaning “not under good control?” It gets used by some folks in this community, so I was wondering if it’s something we need to be better educated about.

I think the opposite of “brittle” diabetes would be “honeymoon” phase, if that makes any sense.

For example, my diabetes becomes more brittle when I’m sick or when I haven’t exercised in a couple days. During my most brittle phases, it seems like a single Cheerio will spike my sugar 100 points or my Lantus insulin just isn’t working right.

Well that’s my interpretation anyway…and now I feel inspired to go to the store fore some peanut brittle.

I broke my foot my first semester of college (suggestion: don’t run in platform flipflops). After that, my college voice professor would always talk about my bones being brittle. She’d tell me not to stand on the outer edges of my feet while I was singing because I might break my feet again. sigh She was such an important figure that I was too intimidated to correct her for the longest time. After a year or two of it, I put my foot my down. And it didn’t break. :wink:

Melissa-
I, personally, believe that “Brittle Diabetes” is just what you said… “a loose label meaning ‘not under good control’”. I have read the following to describe this “phenomenon” < Individuals whose diabetes is “brittle” experience unpredictable, out-of-proportion rises and swoops in blood glucose, within short periods of time, as a result of very small deviations from schedule. >

Like anything in life, a job, a marriage, children… diabetes is just another thing you have to work at. I’ve been T1 for 36 1/2 years and I’ve had my fair share of ups and downs along the way, but I take good care of myself and my diabetes. I gave birth to 2 children - very successfully! - one weighed 6 pounds, the other weighed 6.8. I went to the doctors (gyno and endo) 5 times a week for 9 months with each pregnancy. I checked my blood up to 20 times a day. The first pregnancy was done on syringes and the second on a pump. Now, my kids are 10 and 13 and I still go to the endo every 3 months and am in constant control.

My advice…just do the best you can to take good care of yourself!

Okay, in my quest to quench the curiosity this morning, I found this link helpful.

It’s pretty much what we’re thinking. There are preventable, treatable reasons your blood sugar fluctuates and the term is (in general) abused and given to patients. See, this is what I thought. People get labeled “brittle” and think they have an excuse to give up on control. Apparently only 1% of type 1s can accurately be described as such (according to about.com).

I’ve never believed in “brittle diabetes”, outside of it being a symbol for diabetes that is out of control due to a number of variables the diabetic will not or cannot process and integrate into their daily food, activity, and medicine decisions.

The term “brittle” was not a standardized term agreed upon by the medical profession and is generally viewed as an old term which was given when the physician was unable to help the patient attain an acceptable level of “control” (it belongs with the term “non-compliant” diabetic if that tells you anything). However, the term “labile diabetes” is an agreed-upon term, and it means a type of diabetes when a person’s blood glucose (sugar) level often swings quickly from high to low and from low to high in spite of following recommended treatment protocols.

If the blood sugars are swinging that much, it would seem to me that the recommended treatment protocols need to be adjusted. The idea that “labile diabetes” exists implies that some diabetics have unknown factors influencing their blood sugar significantly. How could something have such a measurable impact on blood sugar while remaining undetectable, even over the long term?

My docs describe me as brittle because of my over then normal insulin sensitivity. It is very hard for them or I to figure out dosing and has been that way for 12 years. One day I am 300 and no amount of injected insulin will bring it down much. Then one day I am 300 and 1/2 unit will bring me to normal. Same foods and same activity. It took me being in the hospital for them to believe it they saw it for themselves. I just accept I have to check every couple of hours and am thankful for my CGM. It does not match perfect but those arrows are really helping me stop awful lows and cap spikes before they get higher. I always have to do .5 or 1/2 unit at a time for corrections and wait and watch.
Not so bad I am used to it.
Be loved

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My doctor says I am a brittle diabetic. He describes it as my blood sugar flucating from high to low with no apparent reason. Before I got my insulin pump I could go from a normal blood sugar to a low blood sugar without warning or without any extra insulin or I could from low to high in the drop of a hat as well. It was nothing I ate, wasn’t because I was sick or anything.

Not that easy. I can (say on home-cation) get the same amount of sleep (good in my own bed with Cpap and O2); eat the same meals at the same time every day, with the exact same routine every day, and have very different results fromthe same amounts of insulin every day…and no they (drs & other diabetes speciliasts) haven’t a clue why. There are more of us than many people think who despite their and their medical teams best effort, do not get consistent results…

See, this is where my confusion sets in, to be honest, Cody. I thought that that was just “being diabetic.” The hardest thing for me to admit is that usually there is a dan good reason I’m having a problem and it’s my own dan fault. But sometimes the diabetes is wild and I have no idea why.

Like today, I’ve been suspecting that my 4-6pm basal needed to be upped, so I tried a temp basal of 130% during that time slot. I rose more than usual and was 178 by 6pm. ??? So I took a correction bolus. Then I tested for dinner and was 234. I took my meal bolus, thinking surely I would come down in time to eat with all this insulin on board and no discernible pump issues. I am still sitting pretty at 240+ and just took a manual injection of Apidra while my dinner sits untouched and cold on the counter.

I have always just understood diabetes to be a strange and unpredictable animal. After all, I don’t know anyone who is in “control,” per se. So doesn’t everyone have significant fluctuation? (I’m REALLY asking, not hypothetical.) I have never been diagnosed as a “brittle” diabetic, but I have been labeled “noncompliant” more than once (even though I felt I was really trying).

Now that I am much more tuned in to my actions (and subsequent reactions) thanks to TuDiabetes, the variations I never understood are certainly fewer and farther between. This makes me doubt the existence of uncontroll"able" diabetes. I am in better control than ever before in my almost 20 years. And it shows with a reduced A1c and praise from my endo.

So I ask because I don’t know if all of us are brittle, none of us are brittle, or some of us are brittle and if so, what the heck am I? I don’t think I’ll ever know, and I don’t know what we’d do with the answer. But I do believe that EFFORT = TRIUMPH. I refuse to accept the alternative anymore.

For what it is worth (not much I know) I thought I would weigh in on t ]he issue of brittle diabetes. My mother was termed a brittle diabetic and after several years, I have also gained that label.

From my perspective, being brittle means that you have little tolerance to wide swings in sugar levels. Let me explain. I ate some grapes the other day, about 10. My blood sugar went from 91 to 272 in about 35 minutes. I covered the high and sure enough I checked it again in about an hour and I was down to 117. As you can see being brittle means wide swings with little input. The difficulty in being brittle is that your BS is hard to manage. It rockets up and down at high speeds.

Now I was not always brittle and most diabetics are not always brittle. The reason is that even as your body stopped producing adequate insulin, it likely produced some insulin. In addition, as you age your metabolism slows down. Lets imagine the 10 grapes in the mouth of a 24 year old recent diabetic. Chances are her body still produces a little insulin, she is more active, and she is less like to have wide BS swings.

My mom just before she dies was very brittle and very sick. One day I was with her in the hospital and they took her BS and it was way over 300. Well they pushed a little insulin (10 units or so) and shocked her in less than 15 minutes. I asked the doc about it, and remarked that with her loss of potassium she was far more reactive. Mom was having hallucinations at the time as a result of the loss of potassium. She lost potassium because she could not eat, and she could not eat because of the stomach neuropathy. In short, she was a mess at the time and when the inputs (no feed) are very low and your BS sugar spikes, you have figure the insulin will push back rapidly

As a person ages with diabetes they usually become more brittle. Being brittle did not happen to me over night. First the amount of insulin taken increased, gradually. Then one day boom I was brittle. Call it being out of control or call it aging, it is really about the same. We can hope that with today’s pumps, something my generation did not have for years that being brittle will largely disappear. In the mean time, I am guessing that brittle diabetics will remain an issue.

Now you will notice that being brittle is not usually associated with bones. So many people make that mistake when referring to a “brittle” diabetic. That is not to say diabetics do not have brittle bones. As you know several diabetics easy break bones and of course with neuropathy in ones feet that can be deadly. Osteoporosis, low calcium levels, nerve damage can and do interfere with bone development and strengthening. If you will allow let me use my mom once again. When she died at age 48 her autopsy reveled 112 bone breaks on her right foot and 73 in her left. Mom had no feelings in her feet so the problem was not pain but swelling and skin ulcers. In her case it was the neuropathy that led to the problem. So mom was both a brittle diabetic and she had brittle bones.

By the way mom was in the original pump trails in 1973, as a control subject. Today I wear a pump and several of us do because of the pioneering efforts of folks like my mom. I will get off topic and say that the first pump I saw was on a cart. The man had to push it around and he could not get in a regular car, we have come a long way.

Rick Phillips

Wow Rick that is so much to go through. Hugs to you.
I am happy for the blessed diabetics who can manage well with insulin. However with same effort it does not mean everyone can and that is where the brittle usually becomes part of the description.

If there were one way to success everyone would be doing it.
Be loved

Melissa-

lol, my co worker called me a “brittle” diabetic…lol I said no, I’m just a diabetic…lol great topic and your right “Brittle” is used loosely!!! I think people autmaticly awesome all people who use insulin are “brittle” wrong answer:) thanks for starting this discussion.

Of all the children I have been treating over years I can mention those who were different ( brittle),not due to not sticking to the routine of diet,insulin& activity.They were admitted many times to see what was going on,BG will swing madly from high to low and schedules have to be changed with more instructions to keep an eye on the child at school and follow him,her during daily activities.

Thanks for sharing your and your mother’s story, Rick.

Laura and Melissa:

Clearly there are many paths to getting and having any diabetic condition. I hate it when folks tell me what I should do or feel because they feel or do something. I was with a new diabetic the other day and there were three of us in the room. Two of us are 30 plus year diabetics and the new diabetic who was having an insulin low for the second day in a row… I asked the wait staff for some orange juice ad the other diabetic chided me because she felt only milk should be used. When he came to after the OJ, she lectured him and I about the need to use milk. Well I know milk works, but it also drives my BS nuts after I drink it. I mean she can drink all the milk she wants, but If I drink a little my BS goes through the roof and I feel bad for the rest of the day. So who is right? Well both are and neither of us. My friend may react better to apple juice for all I know. But I know OJ works and it did. My advice to my friend afterward. Ignore us both and figure it out yourself. Milk is fine, OJ is fine, heck for all I know prune juice is fine. The point is not what happened to me or her, it is what happens to him the drinker. My only hope is if he uses vast quantities of prune juice he will avoid going in public with me for a few days. I suspect that would present another problem.

Thank you for the well wishes.

Rick-
I think I’m going to start a seperate discussion on this topic, but have you ever tried the 15:15 rule? take 15 grams of carb for a low, re-check your blood in 15 minutes? I learned this “trick” very recently (and I’m been T1 for 36 1/2 years). 15 grams of carb is about 4 oz. of OJ. I don’t do milk myself, but it is also 8 Jelly Belly jelly beans.

I read your story about becoming “brittle”. I’m not going to say you’re not, but having lived as long as I have with T1, I do know that your body changes as you age. This past year I had to make a number of adjustments to my regimen and it was all well worthwhile. I’d been running A1C’s in the 7’s for years and I got mine down to 6.6 in Sept. 08.

Rather than calling yourself a “brittle” diabetic, consider this… with the grapes you ate, you did not mention how many, did you take insulin prior to eating them? and do you realize that they contain natural sugars? If I were going to eat grapes, I’d have to take insulin. And, due to the sugars in the fruit I’d most likely get a little high right after. That’s not brittle, that’s LIFE!

Best of luck. Keep learning more and more about how your body can change!

I have just been diagnosed as a brittle diabetic. I follow a very strict diet and take up to 8 shots a day. My a1c is at a 12. I pass out every other day and every other week am sent the hospital. My doctor’s say basicly I need an insulin pump but I am having trouble with insurance company covering this.