14 Responses

  1. Gretchen
    Gretchen April 26, 2014 at 6:01 am | | Reply

    Wouldn’t it be nice if someone would really study this, in a metabolic ward for a couple of weeks in which they really *could* measure things like barometric pressure and humidity, etc. Factors like stress would be more difficult, as just being in such a place might be stressful or boring, another kind of stress.

    But maybe if someone looked, they’d find something interesting.

  2. Robin
    Robin April 26, 2014 at 5:23 pm | | Reply

    Frank! The struggle you’ve been dealing with all these years sounds awful. You’ve done so much work, and have to continue it every day. (I’ve only got a few years in and already find myself tired of the whole business.) Hard as it’s been, this is not the time to despair. This is the time to keep putting one foot in front of the other, keep testing, keep treating, keep experimenting. This is the time to think about what’s most important in your life, to use your time and resources accordingly. Good luck with all that. Some days it’s easier than others. But it’s what you’re pretty much doing every day.

    Will’s advice sounds like the best – though still imperfect – way to manage. I’m not brittle. But sometimes I find my BG going crazy. What usually seems like an appropriate bolus leaves me way too high, and the correction has me gulping juice at a BG of 30. Maybe if I kept my CGM alarm “shoulders” tighter, ate smaller meals and made small corrections I would manage better. Maybe I’ll get better at it all over the years.

  3. Chris
    Chris April 26, 2014 at 5:44 pm | | Reply

    I’m 62 years old, have had T1 diabetes for 56 years. I consider myself brittle, wear a pump, test almost every 2 hours and once during the night. I chuckle when I read about all the “perfect” diabetics with A1C’s of 6, who eat “perfectly” , excercise daily, and don’t seem to mind all the bullsh*t that is involved to try to maintain “good glucose control”. As far as homeostasis, our brains cannot possibly work like a pancreas does. Wil gave you some good advice, you will have to keep trying different things. For me, there is no one answer. I just keep plugging away everyday. I’m bitter, I’m tired, but I’m still alive.

  4. Joe
    Joe April 26, 2014 at 6:30 pm | | Reply

    I was in a clinical trial several years ago where we were kept at a clinic for one week. We had the same thing for breakfast each day, the same for lunch , etc . Not the same carbs, the same food. We exercised the same amount each day. Some of the participants were steady with predictable results , my BS was all over the map. Guess we should have checked the barometer.

  5. Daniel Miller
    Daniel Miller April 26, 2014 at 7:54 pm | | Reply

    There is an easy solution for brittle type 1 diabetes: metformin. The reason diabetes becomes brittle is due to the liver doing unpredictable acrobats. To tame it, take metformin. Then once you start, give it a month to calm the liver. Then start adjusting your insulin. In no time, you will be amazed at your results. Your diabetes will be much more controlled. In addition, you will be mad that this drug has been around since the 1940s. However, dogma and assumptions make people think that metformin is only for type 2 diabetics. Metformin suppresses glycogen release in the liver (which type 1 diabetics suffer from) and increase sensitivity to insulin (which type 1 diabetics need because the less insulin you take the better–in regards to weight and cancer suppression). Then you will hear the ridiculous statement that type 1 diabetics don’t take oral medications for their disease. As if that make any reasonable sense.

    Try it. I bet it works.

    1. Leann Harris
      Leann Harris April 29, 2014 at 2:55 pm | | Reply

      Daniel, would love to second that. I call it the metformin miracle. A1C dropped 2%.
      Then it stopped working after 7 months.
      I take it you’re tried it?

      Frank, you are certainly not alone. Don’t let that doctors make yoy feel crazy or lazy either. Sit in their office and demand they bolus for you and watch you if they think they can do better. Better still, find a doc who will never give up trying to help you. Makes all the difference in the world.

  6. Kristin W
    Kristin W April 27, 2014 at 3:16 am | | Reply

    Frank, Wil already said you were recommended low-carb. I know of some people who have had great success on “very” low carb/high fat diet, as in 25-30 grams of carb per day. Don’t know if you’ve tried this. It is recommended by Dr. Bernstein, and his plan is outlined very well in his book. (I think it is called Dr. Bernstein’s Diabetes Solution.) The premise behind the whole thing is the “law of small numbers”: if you don’t eat many carbs, you don’t require much insulin. Then, if something goes off, as it usually does, the swing is not so great. For example, you never have enough sugar in your body to hit a really high high, or enough insulin in your body to hit a really low low.

    I offer it as a suggestion in case it is something you haven’t tried yet. I apologize for playing armchair doctor if you’ve been there, done that.

    In any case, I applaud you for your endurance and will pray for some relief for you.

  7. Nici
    Nici April 27, 2014 at 5:54 am | | Reply

    I think Daniel might be on to something, but I would suggest that you don’t give up if Metformin doesn’t work. It didn’t work for me, but I’ve had fantastic results with Victoza. Perhaps the new “pee” drugs that Mike covered earlier in the week might also be helpful for you.These drugs all help even out the spikes. Dr. Bernstein’s approach could probably also help you accomplish this, but I know how hard it is to eat such a low carb diet when you’re constantly starving because your sugar is all over the place. Good luck, Frank, and keep fighting the good fight. You’re worth it!

  8. Benjol
    Benjol April 27, 2014 at 11:23 pm | | Reply

    It would be really interesting to see if one of those trial artificial pancreas projects could manage this ‘brittle diabetes’…

  9. mollyjade
    mollyjade April 28, 2014 at 9:26 am | | Reply

    I didn’t realize brittle was out of fashion because of patient blaming. I had thought it was less common because of better therapies (at-home testing, cgms, better insulins, less rigid eating/dosing). This puts things in a different perspective entirely for me.

  10. Beth
    Beth April 28, 2014 at 1:22 pm | | Reply

    For Frank: Are you sure it’s not the Lantus that’s causing the problem? That is exactly what happened to me when I was on it – I now use Levemir and will never put Lantus in my body ever again. Yes, something like 99% of people who use Lantus love it – and convincing a dr. that Lantus is the problem is like pulling teeth (I had to switch dr.’s twice before I found one that would listen to me). I was in the hospital this past fall (long story) and didn’t have my Levemir with me and you could have knocked the entire staff over with a feather when I refused to be given Lantus in its place (they didn’t feel like having the Levemir delivered from the hospital across town…about four miles away). Point is, Lantus is either great or it’s poison – that stuff almost killed me. I love Levemir; night and day difference. (Though admittedly after Lantus I was terrified to take anything, but T1, so I had no choice.) Check into it!! I hope things get better. Feel free to ping me with any questions about my experience!!

  11. Bernard Farrell
    Bernard Farrell April 29, 2014 at 12:55 pm | | Reply

    Thanks for another great column Wil. While it wouldn’t be a solution this is another argument for having a holistic view of your diabetes, including a single dashboard that displays information from all of your devices AND let’s you add comments all over the place.

    This made me wonder about ICD-10, the new version of medical diagnosis codes. It includes a range of codes relating to being bitten by a parrot. Alas, despite the description of brittle diabetes in this list of ICD-10 codes related to type 1, there doesn’t appear to be a code for brittle diabetes. They may however be a code for diabetes caused by a parrot bit.

  12. Bernard Farrell
    Bernard Farrell April 29, 2014 at 12:57 pm | | Reply

    Oops typed it incorrectly. The list of T1 ICD-10 codes is here

  13. mikeC
    mikeC May 2, 2014 at 1:27 pm | | Reply

    I have had type1 for almost 30 years and have been considered brittle for the last 15 of them. I use Levemir (2x daily) & Novolog (as needed) The Law of Small Numbers in conjunction with a constant state of Ketosis (not Ketoacidosis) is the only thing that has ever stabilized me and kept me from the hospital. Not Metformin, not a pump, not Actos, not a CGM, not Victoza, not Symlin, not anything. (yes, tried them all)

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