Brittle Diabetes

I remember the term being used in the Baby Sitter’s Club series (for those who aren’t familiar with children’s book series from the mid-1980s, one of the characters was diabetic and would on occasion mention that her doctor’s called her a ‘brittle diabetic’) but hadn’t heard it used outside of the books. :slight_smile:

I would have to agree with the other posters, though. It likely refered to people who had wide swings in blood sugar numbers.

My mom was type 1 diabetic and back in the 70’s I remember her saying the doctor told her she was “brittle”. I think back before testers and good insulins, and carb. counting, etc. some people didn’t have very good control, and they used the word “brittle” to explain crazy sugars. What do we call it now? A BAD DAY! Diabetic care has come along way!

I was under the impression all people with diabetes, could be “brittle” (sometimes, but not necessary all the time) when unknown, or unmeasurable variables where affecting BS levels. Like stress or a virus.

We have noticed that most of the time Manuel is stressed his BS levels got out of control… but not always however, it is not as easy as to bolus more… since then he might be very low, very soon… very frustrating… Then it is a cycle, and the stress raises even more and so.

When he is sick same thing, sometimes he is very sick and under control… sometimes he is not evein that sick and out of control… it makes no sense so I thought that was “brittle”.

I agree with you to me it seems like a it is a loose label meaning “not under good control?” ans “we don’t know why” :frowning:

My hope is research soon or later will find out what is causing the strange data.

I don’t think it is anything people do to cause this…I feel it is your body responding to something that isn’t a natural production.?? I have had this problem too, and for me it was way too much basal insulin.

I think the term is most definitely used loosely, but I also think that 1% is a little low of a number to represent T1s who are truly “brittle”. My last endocrinologist labeled me as brittle and even said I was the most brittle diabetic he had ever seen. Well, I happen to think that brittle diabetics just need to do more to maintain control. Back then, my A1c was in the 11-12% and now it’s 6.8%. The main difference? I’m now on an insulin pump, I’m also on a CGM and I test way more often and use the temp basal feature on my pump ALL the time (when I’m sick, when I’m stressed, etc). I also found that eating the same things (meaning I know the exact nutritional contents) at the same time of day really helps too! But of course, with tighter control comes more lows and now I experience seizures. But they are few and far between, they usually happen in the middle of the night while I’m in bed (no injuries from falls) and I’d honestly rather have seizures occassionally than A1cs of 11-12%!

Thank you for your reply. I could not get back with u because I had to be rushed to emergency room for sugar at 37. My insurance told me that I sould be able to get my pump in 1 to 2 days. I now have to have someone with me at all times due to the fact I can go into a diabetic acoma or heart failure and my license has been restricted as well.

Well I follow a very strict diet, exercise and do everything my doctor tells me and I still will go from 400 to 35 in one hour. The doctor is saying that I’m just one of the few people that yes an insulin pump could help me and it may not. But I am willing to try anything before giving up.

I am on the fence.
I could consider myself to be brittle, like others have said, due to my extreme sensitivity to insulin (1 unit for 30 g) and days when no matter how much I take I can’t get down. For example, yesterday I was stressed a bit and was in the 200’s all day despite eating very low carb and bolusing all day. Then last night I get home and have a late snack- little here little there- and bolus accordingly and to my normal ratios, and BOOM- test 61 an hour later. I still had 1.2 units on board with at least 3 hours of time for it to work. I have no idea why or how I could become so sensitive and just suck up the insulin so fast. That to me is brittle: unpredictible sensitivity. Just that causes me to be under stress!
On the other hand, I think I am missing something and there is always a reason for these occurrences. Maybe the low happened becuase it was time when my body was recovering from my morning exercise? It was my first real rest time of the day? My endo (also a type 1) used to call it the “black box” theory- the reason is inside but we will never be able to see it.
Either way brittle or not, I am still me, dealing witht the 24 hour disease and its literal ups and downs. I will continue to test all the time, eat and cover best I can and take care of myself physically and emotionally to my best ability. And then start over again each day.

I believe all children going through puberty/teen years are, according to the definition below given by Scott, “labile.” I used to mentally use the term “brittle”; I guess that is outdated. My niece just turned 12. She can spike 100 points in an hour on perfectly correct, just tested basals. She can drop 100 points an hour when disconnected from her pump during Gym. According to her endo she has great A1cs (5.8, 6.1, 6.1 and 6.4) her most recent. I attribute the relatively good A1cs to the fact that she is very stable, usually from 3am to 5 or 6pm the next day. From 6 p.m. to 3 a.m. all hell can break loose! Her numbers are mighty hard to control during this time and it takes a long time to come down from a high with Novolog so I understand what labile, brittle, however you want to label it, diabetics must go through. Bear in mind we test 15 times a day a lot of days. If using her cgms during one of these spikes it is useless, it goes wacky and does not give proper readings until she comes back into better range. I do not believe it is the fault of the person involved if their blood sugars react this way. What I have been doing recently to stop this is increasing temp basal by 200 percent plus corrections (on the Minimed). This huge increase seems to cut off and stop the spike after about three hours. Take blood sugar every hour until she starts coming down and cancel. But I cannot do this if she is away from home during the evening hours. P.S. This is definitely not food related; seems to be growth hormone related (though growth hormone is supposed to start working after bed time).

That honestly sounds like a typical day of diabetes to me. Whether that’s brittle or not, I don’t suppose it matters. Good point.

I was diagnosed as “brittle” during my teen years - again - like others have said - with young diabetics - our hormones are all over the place - we’re experimenting with life - heck - just because we’re diabetics doesn’t mean we should not enjoy life to the fullest (this is my take on how I handle my diabetes - I will not let it stop me from doing anything ). When I was 18 - my endo gave up on me - and told me quite bluntly - I would not live past 40. That really shocked me - and of course - sent me slightly over the hill. For the next 5 years I was really out of control with trying out drugs / alcohol / whatever. I guess I was basically a bad ■■■. It wasn’t until I got married at 30 - did I start to really take care of myself - and have of course - gone past the dooms day age of 40 that was forecast as my kick the old bucket time. Like everyone else here - you have your good days and your bad days - and you just have to do your best. Having forums like this tho’ - is something I wish I’d known about much earlier. I’m sad to say that I only discovered diabetic forums last Spring - sigh.

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I went to the doctor yesterday and she said I have “brittle diabetes.” Basically, she said that I do everything I can, but I still have wide swings in my bloodsugar due to being very sensitive to insulin. I do believe that some doctors just label people with “brittle diabetes” when they aren’t in good control, but I think some doctors do use the term properly. There are a lot of reasons why someone can have wide swings and sometimes they can’t be helped. :slight_smile:

I’ve heard diabetes called “sugar diabetes”. “Having the sugar” made me chuckle! This might help:

Brittle diabetes, also called labile diabetes, is a term used to describe uncontrolled type 1 diabetes. People with brittle diabetes frequently experience large swings in blood sugar (glucose) levels. These cause either hypoglycemia (low blood sugar) or hyperglycemia (high blood sugar), which is more common and sometimes extreme.

Brittle diabetes can be caused by gastrointestinal absorption problems, including delayed stomach emptying (gastroperesis), drug interactions, problems with insulin absorption, or hormonal malfunction.

I hope this helps!

I am with you on the juice. It works faster for me than milk ever would. Maybe that’s odd, but I only bolus half for milk because it doesn’t effect my bg as much other drinks.

My grandmother was labeled brittle because she had the rapid bg swings. She was dx’d type 1 in 1958 at age 24. Her younger sister died of diabetes a few yrs before that. I remember instances of finding my grandmother passed out or nearly passed out because of bg lows. It was so scary for me and my family. She died in 1996 when it wasn’t as easy to get pumps and she still took NPH insulin and R. I think if a pump or even Lantus/Levemir and rapid insulins were easily available to her, she may have lived longer. There also wasn’t splenda and other things while she was diabetic so for that aspect of it I am grateful to have those things. I too was dx’d at 24 and had the drastic highs and lows, and wore the 3 day CGMS to try to figure it out and there were a couple patterns, but still bg readings that were unexplained. Wearing my pump (3yrs) helps and I am not brittle. I don’t know that I was before, but it felt like it. There are times I think the term is used loosely and as an excuse, and times I think a person is brittle .

I agree, BTW, anyone heard of a little thing called hormones? A patient is taught to observe trends related to hormones, but cannot measure them and make appropriate adjustments.

i was labeled as a brittle diabetic, but i had more lows than highs. even with the pump i still have them, but it is more under control.

Brittle diabetes is a good diagnosis, but rare, I just read less than 1 percent are brittle, and I am 1 of them. my blood sugars range from 50 to 450 any given day and for no reason. My blood sugar can rise by giving myself insulin, and I have had it drop by eating candy when I was low. My doctor wants me to TRY to level around 225 as for me 100 is to low, but even that is a challange. My A1c is 10.9 and has been as high as 14.3, and recently I was diaginosed with retinopathy because of it all. So, yes it is real, but not as somebelieve it is, it is not just a mild change, or just a passing symptom, it is a new challange to an already extremely challaging lifestyle. I am curios if there are any others, as I personally have never met anyone else like me.

John R. Shuman

I think perhaps as we get to know our bodies better and become more aware of what may affect our BS, we figure out why we have some of the previously unexplained highs and lows. My certified diabetes educator seems to believe that the time period right before a full moon can affect your blood sugar. I have spiked to 385 when I was ovulating. I have had very high blood sugars the last day before my period started, and then sometime after I started, go crashing really low when the hormones finally “switched off.”

I have had blood sugars shoot up to 300 after a particularly heated discussion with my teenager, and my blood sugars will run in the 200s and 300s if my allergies flare up.

And of course there are the unexplained highs and lows, too.

And over-treatment of either highs or lows can result in an extreme swing in the other direction as well. But darn it, sometimes when your blood sugar is low, you just aren’t thinking rationally and it is so easy to overtreat.

I am really thankful for this thread because I get really tired of people thinking I must be eating at baskin robbins for my highs or not eating at all for my low’s. I have not been so active online because I really put myself through D boot camp and the best I can do so far is cutting out the 300’s and the 40’s. My endo is so happy. I am not. Don’t get me wrong she is not happy that my blood sugar is ever high or low she is happy the swing is a bit more controlled.

I do feel a bit better but I till need to work on it but I need a break from boot camp. I did not change my insulin ratio’s or food instead I started to really pay attention to my body and created files on my puter every little thing is written on. I am finding so many things that effect my BG even just drinking a cup less of water that day instead of my norm. I am hoping that as I compile information it will help but it is daunting to record every little thing and your life becomes about diabetes which is a hard way to be, at least for me.

My insulin sensitivity is ridiculous when not eating 1 unit will drop me almost 170 but when I eat I am more normal at 1 to 15g.
All the “good” things for diabetics to eat, drive my BG wild so I am wondering if the new way of thinking about food that some people are protein/fat efficient and some are carb efficient as well as some both is really on the right track. Of course I have other health reasons that mess up control but I also have many things in common with other “brittle diabetics.”

I am not happy that anyone one of us has control problems but in the very least it is nice not to be compliant and alone.
be loved