FUDiabetes

“Brittle” Diabetes.... Real? Or just an excuse to explain uncontrolled blood sugar?

Per diabetes.uk.com:

“Brittle diabetes mellitus (or labile diabetes) is a term used to describe particularly hard to control type 1 diabetes…

Brittle diabetes presents as type 1 diabetes that is very difficult to control. People with brittle type 1 diabetes may experience the following symptoms:
-Unpredictable, sharp changes in blood glucose levels without an obvious cause
-Frequent episodes of very high and very low blood sugar
-Greater likelihood and frequency of experiencing ketoacidosis and/or severe hypoglycemia…

Brittle diabetes is relatively rare. Research suggests it is more common in females than males and tends to occur in young adulthood…

Brittle diabetes has a number of potential causes. Psychological issues [365] and inconsistent digestion as a result of nerve damage [366] account for most cases.

Brittle diabetes is often associated with stress, depression and other psychological issues. Stress can lead to acute and temporary insulin resistance.

Additionally, other psychological issues may add further complications to the management of type 1 diabetes.”

I’ve been told I was “incredibly brittle” since I can remember. First it scared me, but then it ticked me off. If autonomic neuropathy weren’t what was behind my brittle diabetes (which it wasn’t), my emotional instability most likely was. I couldn’t help feel that this was pretty sexist as most of that definition seems to be geared toward young, emotional (and irrational!) females who can’t get a grip. (When I used to be young), I took great offense.

Fast forward some years, and I feel like I CAN make my numbers normal, but not without ever taking a break or ever looking away. I can control things as long as I’m able to give it all of my time and attention. Could this really be brittle? Or is that term nothing more than a way for us to explain away undesirable blood sugar?

It’s friday night. I hope no one’s around to read this. :grin:

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Brittle diabetes, for whatever reason, is a real thing. There are some people, try as they may, who cannot control their diabetes. Whether it is emotional or psychological, it becomes physiological.

I do think the term “brittle diabetic” is widely misused.

Yes, a very reasonable third option that I hadn’t considered… so at what point does someone consider themselves brittle? If I can get good control, but I need to spend every waking hour on it, is that brittle? I should leave your reasonable answer alone… I’ve just been thinking about this for a long time and was curious what it meant to you all.

From what I’ve heard and (hopefully) understood, brittle usually means the person is having very severe changes in BG - bouncing from very high to very low with very little to no reason or predictability.

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Hmm, sounds like our diabetes…

I think the term “brittle” is very over-used and most people who are (or were) told they are brittle are not.

However, I agree completely that different people seem to have different levels of ease with which they can maintain control of their blood sugar. I wouldn’t describe myself as brittle, but I do describe my blood sugar as volatile a lot, because it often changes rapidly, or doesn’t change when I’m trying to make it change.

There are also most definitely physiological things that can affect blood sugars, too. It’s not all psychological. A few off the top of my head are hormones (for women and also kids and teenagers) and other chronic illnesses. My worst period of insane, uncontrollable blood sugars came in the months after I was diagnosed with Graves’ disease. I was just holding on for dear life as my thyroid hormones adjusted and subsequently affected every system in my body as they did so. My blood sugar has always seemed difficutl to control, in large part (I believe) because of female hormones. But ever since my diagnosis with Graves’, things have continued to be more unsable than they were before. Throw in some other chronic illnesses, a variable schedule, and blood sugar that reacts to every minute variable in my day, and the only way I’m able to maintain any semblance of good control is to eat a low-carb diet (the one thing I can control to help keep things stable for me) and check my CGM often to try head-off and minimize the swings.

I find it very frustrating at times. I want good control. It’s very high on my priority list. I put a lot of effort into my diabetes. From food choices to exercise to trying to anticipate factors to frequent monitoring and adjusting to micro-carbing and micro-dosing many times each day. And I can sometimes manage to go a few magical days at a stretch with great control, so it’s not just that I don’t know what I’m doing. But something always change to bring back the rollercoaster.

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I’d never heard this term until I started browsing online forums. My initial reaction was that it was a made-up condition that simply describes uncontrolled diabetes… I don’t think that’s true anymore though.

I made a mistake the other night that sent me into a massive roller coaster lasting for a day or so… very unpleasant!! I know what caused the problem though. I don’t get roller coasters unless something went wrong. Sometimes the cause might be out of my control, but I can almost always figure out what it is. Identifying the problem helps me handle the same scenario in the future much better.

My understanding of brittle diabetes is that people with this condition cannot use this same method to control their swings in bg. The patterns and causes elude them.

The definition has changed a lot since the term was coined in the 1930s
(https://www.ncbi.nlm.nih.gov/pubmed/9047086). I’m not convinced there’s a universally agreed-upon definition today.

When I was diagnosed in 1970, I got the impression it was used by doctors as an umbrella term for difficult-to-control patients (as in: “I’m a mediocre family doctor with an office in a strip mall and garish sports jackets and I don’t really know what I’m doing with this patient and their results don’t match what my first-year textbook says so let’s blame it on the patient”). Whether patients were difficult to control for physiological reasons or because they didn’t test that much and didn’t follow the time’s restricted diet (:flushed:) wasn’t taken into consideration. If your sugars were all over the place, you were called brittle. I haven’t heard it used for a long, long time, and would certainly not now use it to describe my own often roller-coaster diabetes.

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I hope you get to use a good closed-loop system some day, because if it works for you, it will lift much of the burden while giving similar results to what you now have. LOOP did that for me, and I hope that some of the forthcoming commercial systems will make the experience more widely available.

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I think there definitely are brittle diabetics – if you have gastroparesis or other hormonal issues going on I can imagine that it could really make blood sugars more difficult to control. I don’t think, @Jen, thatyou describe yourself thusly, but you certainly seem to have more challenges with BG control than the average bear and I can imagine taking those challenges to an extreme would make things utterly unpredictable. I have also read about people who are so brittle that even in the hospital, with an IV drip of insulin, things are not totally smooth – because you can see how much insulin is needed to keep BGs flat, you can see these people really do have more fluctuations in their insulin needs than would seem possible. But I suspect that as more people get CGMs and new ways of controlling BGs, more and more people who would have been termed brittle in the past will no longer be so.

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Sorry for the late response, but you got me thinking about it again. After reading @Jen’s stories, knowing my own difficulties, following @T1Allison’s hormone journey and imagining a doctor sitting with each of us individually for the 8 minutes allotted, I wonder if we don’t all, your hospital examples included, get thrown into the “brittle diabetes” pot strictly for the fact there is no time to explore all roads leading to “hard to control” numbers. Slap a “brittle diabetic” on it, and usher them toward the door…

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Once we can get some decent science behind hormone fluctuations, that would help a lot of us be less “volatile”. (I love that descriptor, @Jen).

My brother has worked with a true brittle diabetic in one of his side jobs he has. This poor guy has been declared dead three times. One time he woke up in the hospital with the sheet over his head already. Another time a set of construction workers had to wrangle his car somehow (or they waited until he crashed into a light pole, can’t remember) bc he was passed out or in a coma. I was so young when it happened (and I wasn’t T1 yet so I didn’t absorb the details).

Whenever this guy goes out for errands or a lunch break, if he doesn’t come back to work, then my brother goes looking for him. Last time my brother found him coming back to consciousness on a bench outside of a Wal-Mart. No one had stopped to help him.

This guy is a great guy who is not delinquent in his care. It’s just what he’s got, from what I understand.

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Which is why I’m gonna stop crying about my diabetes…

I had a friend in the last two months of his cancer battle tell me not to minimize my own struggles and challenges just bc of what he was dealing with. It was the most generous thing I’ll probably ever hear in my life from another human being.

All of that is to say you can have frustration. That’s normal. I’m much healthier when I allow myself that than when I’m trying to fake that everything feels fine when it doesn’t. You are not a whiner. You are totally baller.

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I’m glad you pulled that back real quick the way you did… I was on the verge of tears.

I don’t know what to say. About your friend. I’m sorry to hear it, first of all. And after that, what a beautiful and selfless thing to give to another at the end stage. It sounds like you had a very kind friend. And although I do understand that thinking, I also am humbled when I realize what others are facing. Sometimes we can get too caught up in our own problems, and in that, they can grow. I won’t pretend like my diabetes can’t blow… sometimes I just hate an entire day. But I’ve got a whole lot of things not to be crying about, and it’s okay to spend some time focusing on those thoughts…

I guess, if everything is already at terrible, then what does that make the next bad thing?

Which reminds me of Office Space if you’ve seen it… where every day is the worst day of his life. :grin:

By the way, I ended up eating half of the contents in my pantry while you were getting down on some deep and crazy basal theories. I couldn’t even see straight never mind try to follow your thoughts. But I’ll have to check it all out again to see where you were going with it…

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It was easy to be labeled brittle in the days when urine testing and single injection Lente were common treatment. And more so when the Regular+ NPH regimen was prescribed. I would assume it’s used less often now, with better insulin and tools.

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I have doctors throw it around like nothing. Every office I go into. “Oh, so you’re brittle”… “you’re the most brittle I’ve seen…”. The eye doc, the podiatrist, the dentist… everyone gets to throw out the label.

I’m compiling a (fast-growing) list of unhelpful things I’ve heard in doctors’ offices since developing diabetes, and I’m tacking this one on. It has not helped me to hear I can eat anything I want because I have insulin. It has not helped me to hear that insulin causes weight gain. And it has not helped me to hear that I’m “just brittle”. These things have negatively affected my strategies, my expectations, and, ultimately, have laid the foundation for my “limitations”. It’s okay because I’m here now sorting things out, but it’s just interesting… and kind of a shame.

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I’m glad you’re here.
My reliance on doctors has greatly declined since I found online resources such as this. I keep my doctor happy so that i get RX and we don’t talk much about my BGs or daily routines. I used to, with similar frustrations.
Many years ago, lab A1C results were mailed out, days after the appt. One of mine showed an increased A1C, with handwritten comment by endo saying “Need more exercise!!”. Not at all relevant to what caused the higher A1C.

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A woman I knew was severely hypo-unaware and her dog saved her lifebmore than once by licking her face until she roused enough to phone for help. Thank goodness for CGM!

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I used to have lows so bad that I’d pass out as a kid. I’ve always been fairly hypo (and hyper) unaware. If it weren’t for the Dexcom and my attempts to control my blood sugar, I’m sure I’d have ended up needing medical assistance as an adult. Despite all that, I’ve never been labelled “brittle@ to my knowledge. Although I did have an endo once decide that if I could get 50% of my readings in range and keep my A1c around 7.5% he’d be happy with that. My next (and current) endo pretty much gave up trying to spot patterns and said I needed a CGM if I wanted better control, and he was right

These days, no endo would call me brittle. But it’s mostly because I’m so strict with eating low-carb and sugar surging. Currently I’m in a situation where I’m eating higher carbs )l(but not restaurant or unknown foods). Just this morning in the past three hours I’ve been from HIGH to LOW on my Dexcom after giving what I thought was an appropriate correction. And now I have a massive amount of insulin on board because I just boluses for breakfast (having tested at 6.5 mmol/L about 20 minutes earlier, no pre-bolus). I’m in one of those phases where I feel like I have no idea how my blood sugar will respond to anything. I imagine truly brittle people must experience this all the time.

With so much horrible advice from medical professionals (like “eat whatever you want”), it’s hard sometimes to separate people who struggle with control due to lack of effort or good medical care and those who struggle from physiological reasons.

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