21 Responses

  1. Paul P.
    Paul P. September 10, 2013 at 8:14 am | | Reply

    Back in the 1970′s when I was in my twenties my gp assigned the llabile label to my diabetes. Of course, I was being treated with a once daily injection of beef pork lenti and czi (better known as regular) and a fixed exchange based diet. I think the label may have stemmed from the fact that controlling my diabetes after a thyroid lobe removal was difficult.

  2. Kristin W
    Kristin W September 10, 2013 at 8:37 am | | Reply

    Nope, no experience with “brittle,” just “brutal.”

  3. Leann Harris
    Leann Harris September 10, 2013 at 8:45 am | | Reply

    Yes, Virginia, there really is such thing as “brittle” diabetes.
    Mike – THANK YOU for posting this and helping to raise awareness! I’m fine if you don’t want to call it “brittle”, but there needs to be more awareness of this rare phenotype so that patients (like myself) can get the help we need and are no longer blamed for being “non-compliant”.

    I just talked to Ginger Vieira about this on her podcast

    I was diagnosed at 26 and from day one would go from 30 – 500. I charted my numbers to try and find patterns (back before cgms) and even thought I was an analyst at a Nuclear Power plant and had access to some of the smartest minds, no one could detect a pattern. I sat with my Doctor and the CDEs in the office for a week so that *they* could count my carbs, they decided bolus and correction doses: nothing they did was “right” either. The validation that came with the pronouncement “We believe you” felt incredible!

    Over the next 13 years I moved and switched doctors. I tried Symlin, Byetta, Victoza, numerous pills and it wasn’t until I tried Metformin 11 years into all of this that we found the *biological* reason for my blood sugar swings. But prior, I was subjected to being called an idiot, uneducated, “you just don’t get it”, unwilling to comply with treatment protocols, and a host of other demeaning and degrading things by Doctors and CDEs. I had to find the resilience to keep trying and keep searching for answers. I didn’t receive acknowledgement for how hard I worked and because clinicians didn’t know how to help me, all shame and blame was placed upon my Diabetic shoulders.

    When I finally found a doctor who took the time to listen and try a $4 drug *and it worked beautifully*, I had the validation again that I had gone so long without. Metformin stopped working for me eventually, but I had the fortitude to find another doctor who specializes in “brittle” diabetics who could verify what was going on, and it’s a condition with the communication of alpha cells to my liver. Had any doctor in 13 years even brought this up as a consideration? No, it was all the patient’s fault.

    I became a Diabetes Coach to help people with the psychosocial aspects of managing diabetes due to the fact that my experience left me feeling shamed, invalidated and incompetent. NO ONE deserves to feel the way I was made to feel, regardless of the reasons they are struggling. Are there *plenty* of people who *don’t* have a biological reason for swings and just need information and a plan of action? Yes, of course – they are just lacking information the way I was. We have a gap in care: information does not equal action, and with coaching, all of that knowledge can be synthesized. I don’t come from a “I know more than you” mindset – there needs to be more personalized attention that fits each person’s life and challenges. Regardless of the cause, there is something you can do, and you are not alone!

    But we need to raise awareness that even after detailed help, there still exists a phenotype that needs even more assistance. My specialist says that due to lack of awareness, there are not enough funds to research this phenomenon. He calls us “The 4400″ club, as the swings are just unbelievable and hard to comprehend.

    Thank you for posting this article!!!

    Leann Harris

    1. val
      val September 11, 2013 at 5:04 am | | Reply

      I too was diagnosed as an adult with incredibly labile blood sugar levels. I think without a CGM I would be a frequent emergency room visitor. As it is, even with the CGM I spend an average of two hours a day “working on” my blood sugars – and that is with virtually the same breakfast, lunch and dinner every day. Some days my usual 15g breakfast sends my BG up over 200 points and requires 3 or 4 corrections to get back down to normal, other days it drops so low I have to eat another 50g of carbs to get up to 100 by noontime. And these days don’t clump together either!

      What has improved things over the past two years or so is menopause. Apparently my immune system went for my pancreas, thyroid and ovaries all at the same time, and the amount of random hormones sloshing around my body at any given time is completely unknowable. Now at five years post-menopausal, I occasionally get weeks of “easy” blood sugars at a stretch – but also times where my insulin sensitivity triples out of the blue for four or five days.

      I cannot think of a better way to describe this than “brittle”.

  4. Sandy Floyd
    Sandy Floyd September 10, 2013 at 9:54 am | | Reply

    VERY interesting, Mike! Vince has been referred to as a “Brittle Diabetic” more than a few times by his doctors. At first we laughed at it and said to each other, “is that a new type??” I hate to admit it, but we have actually begun to use the term when trying to explain his situation to new doctors. Sometimes they don’t get the picture if you just explain the complications but as soon as you say “Brittle Diabetic” all the sudden the light bulb goes on. There are a lot of things that are outdated, even just in the last 10 years. We were just having this conversation the other day. I think just like the disease itself, the terminology is just as confusing!

  5. mollyjade
    mollyjade September 10, 2013 at 10:51 am | | Reply

    It seems to me brittle is about as helpful as the term ideopathic. Something unexplained is going on, but does labeling it brittle get you any closer to an answer of what that something is?

    1. Mary Dexter
      Mary Dexter September 10, 2013 at 11:26 am | | Reply

      Both are terms that at least acknowledge that information is missing and that the healthcare professional doesn’t know either why it happened or how to fix it. Sometimes saying I don’t know is the first step to finding out.

  6. Mike Ratrie
    Mike Ratrie September 10, 2013 at 12:41 pm | | Reply

    Thanks for the post and the chance to learn something new! I was certainly in the “brittle diabetes” is an old term school, and still think that is true when applied to me.

    @ Leann Harris – keep educating!!

    Mike, here is my snarky comment, is Merck Manuel related to Carlos Danger?

  7. Daniel Miller
    Daniel Miller September 10, 2013 at 9:20 pm | | Reply

    There is no such thing as brittle diabetes. If so, it should have a definition and description.

    Now, a person with wild swings in blood sugar is simply uncontrolled diabetes. This is usually caused by diabetics who are carbohydrate sensitive. What happens with these diabetics is when then they eat for example a blueberry muffin, they will have the normal spike, but then will have another spike 5 hours later. If they do not take insulin 5 hours later, their blood sugar will raise 100 to 200 points.

    You take anyone who thinks they are brittle. I would put them on a high dose of metformin (on top of their regular treatment of insulin), and the brittle swings in blood sugar will be tamed down.

    The source of the problem is the glycogen release in the liver.

    If someone who thinks they are brittle will not follow a low carb diet, then metformin will be needed. However, it a supposed brittle diabetic follows a low carb diet, then the diet alone will probably be enough.

    Any spike in blood sugar points to the liver as the culprit for the problem at hand.

  8. Caroline Yeager, M.D.
    Caroline Yeager, M.D. September 12, 2013 at 10:31 pm | | Reply

    That old term “brittle diabetic” reminds me of the term “senile primagravida” (a woman over 35 who is in her first pregnancy). What they mean is the doctor doesn’t know anything about it. lol

    The same thing is true of the thyroid. Do you know the relationship between blood sugars and cellular (not serum) thyroid levels? Remember, you can be quite hypothroid with a normal TSH. But hypothyroidism can definitely raise your blood glucose levels, and hyperthyroidism can lower them. Do you or your doctor know that?

    What I also find interesting is that the ancient Egyptians were very interested in the balance of all the endocrine glands, which lie generally in the midline, and all must be in balance for good health. So what’s our problem? Understanding this.

  9. Ingrid Glass
    Ingrid Glass September 13, 2013 at 3:05 am | | Reply

    I was informed by a German lady with Type 1 that in Germany they diagnose you not just with Type 1, but either Type 1A or 1B. It is acknowledged that there are (at least) 2 different types – 1A tends to be insulin resistant, need high doses of insulin, have fewer hypos and more stable, less fluctuating BGs; 1B needs lower insulin doses, is generally a leaner body type, and has greatly fluctuating BGs with frequent hypos. This may or may not correlate in some way with brittle diabetes? I find it interesting though that Germany makes this distinction.

    I was a brittle diabetic as a child, labile as an adult. I’m now pumping and menopausal and still have plenty of random BG days where all is haywire for no obvious reason. I know there could be all sorts of things going on that I’m unaware of & are out of my control, but I cannot imagine ever having days and days of stable BGs. Brittle or not, diabetes is a b*st*rd of a disease which is different for each of us, and which so little is still known about by the medics.

  10. Kate Gilbert
    Kate Gilbert September 13, 2013 at 3:36 am | | Reply

    Terrific, balanced and enlightening article. You changed my mind from thinking brittle diabetes was definitely outdated to a maybe it’s not. The personal stories are very compelling. Well done on presenting a complex issue beautifully.

  11. Manny Sorge
    Manny Sorge September 13, 2013 at 10:33 am | | Reply

    I would like to thank Diabetes Mine for posting this question and the interest it has generated in the way of responses.
    BDF’s concern for substituting a different term for brittle is that it may result in the condition being completely overlooked (especially when you lump a few thousand brittle individuals in with millions of stable T1D’s) or that it may lead to the failure of providing proper treatment.
    25% of the NIH supported clinical trials being run today by leading medical researchers recognize the brittle condition and use the term brittle in their respective titles. Not bad for an archaic term.
    When you consider the rarity of Brittle T1 Diabetes (3/1000 T1D’s) the likelihood of a physician ever encountering a true brittle diabetic is remote at best . There are some 6, 000 endocrinologists and several thousand diabetologists practicing in this country to service this very rare disease estimated as affecting some3700 to 8700 U.S. citizens.
    One of the distinguishing features of a true brittle diabetic is the frustration experienced by their health care team when they realize that conventional therapy viz., following the physician’s type1 playbook , nutrition/carb counting, exercise, and a strict insulin regimen doesn’t work.
    BDF looks to educate health care practitioners on how to distinguish a brittle diabetic based on listening to what their patient’s are saying and quantifying levels of instability when they first suspect a patient to be “non-compliant”. It’s more constructive than pointing a finger and saying “you’re non-compliant” when T1D playbook results are not achieved. Once recognized as compliant, physicians need to customize their treatment in search of some 18 known causes of brittleness. Once the cause (or causes) is diagnosed, they treat accordingly and the chance of reverting to a stable T1D occurs in the majority of cases.
    And to those who wish to believe that brittle diabetics are just non- compliant because of behavioral issues there is a new and interesting question that is being addressed as a result of the recent bidirectional link found between depression and diabetes.
    Is depression along with other behavioral issues a CAUSE OF or the COMPLICATION of diabetes in general or brittle diabetes in specific terms.? There is growing evidence that the latter can be the case.
    The old cliché “a rose by any other name…” doesn’t change the fact that this brittle condition exists and that it needs to be treated differently than a stable T1D making it very unique.
    BDF has been at this a relatively short time and believes it can already point to two true cases of brittle diabetes.

  12. Kristina
    Kristina September 13, 2013 at 3:40 pm | | Reply

    I was in the hospital for 2 weeks for DKA – the first week I was NPO (no food or drink ) IV only. I was on an insulin drip every 2 hr checks. I was not regulated for even one day!! So in the strictest of circumstances my doctors were baffled, they finally sent me home with no instructions other than good luck. I have been 115 prior to lunch, eaten a bowl of chicken soup with very few noodles, blouses 7 units (I give 5 no matter what- then a sliding scale) by 2 hrs later I’m 300. I am a brittle diabetic- whatever someone wants to label the underlying cause as is insignificant. It does not change the random flux of glucose in my system. I am compliant and have taken metformin- I am exhausted with trying.

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  15. george bell
    george bell May 6, 2014 at 10:07 am | | Reply

    so what would happen if the pancreas failed to produceglucagon….I suppose the liver couldn’t metabolise the glycogen and youd go hypo pretty dam qick…brittle diabetes is a glucagon and insulin deficiency….isn’t it.

  16. Ginia
    Ginia June 13, 2014 at 9:37 pm | | Reply

    I am a Brittle diabetic I was diagnosed as a brittle diabetic in 1988 I had a diabetic seizure this morning after doing very strenuous physical activity all day yesterday and that is what caused my sugars to crash. The paramedic checked my blood sugar and it was 52 after inserting the sugar IV she tested minutes later it was 268 so yes brittle diabetes is a fact and there are a number of reasons for the fluctuations. I am also hyper sensitive to insulin every unit brings my blood sugar down 50 instead of the typical 25 there are many reasons for brittle diabetes to fluctuate but not enough research has been done. They should have brittle diabetic insulin classes offered but because of it being rare that is not available. this is more frustrating to us brittle diabetics than care providers can ever understand.

  17. Kim
    Kim July 14, 2014 at 12:21 am | | Reply

    My son was diagnosed with type 1 at age 2 yo and he is currently having large swings in blood sugars despite careful measurement of food and conservative insulin dosing. About 30 min after eating he can quickly dip to 60s and then four hrs later have a meal peak which causes blood sugars to swing high. He hasnt been labeled brittle yet but seems to not follow the simple insulin carb ratio rules. I have found that basal insulin dose changes and the timing of the basal insulin contribute to his unexpected lows. Even though the basals are designated peakless there is definitely a peak or period closest to when the shot was given when he dips and it appears dose related. perhaps in some cases it is the timing and dose of the basal insulin which may wreak havoc on some ppls unexpected lows levels. In addition it is my opinion that more studies need to be done on the effect of insulin antibodies including antibodies formed against synthetic insulin analogues. while drug manufacturers claim these antibodies have limited effect perhaps in some percentage of patients they do cause issues. The insulin package insert notes that antibodies can form against any exogenous or synthetic insulin. I think to treat the entire disease properly, immunology specialists should be a more prevalent team player besides endocrinology and CDEs. It seems too simple, easy, and unconstructive for some practitioners to label a refractory patient “non compliant” or a “cheater” when there are other complex physiological and pharmacological variables at play also.

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