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Frustrated with A1C

Discussion in 'Parents of Children with Type 1' started by rutgers1, Apr 18, 2012.

  1. rutgers1

    rutgers1 Approved members

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    I just got back Matt's latest A1C. It was 7.9. That really bummed me out. At the time of his appointment, his 30 day average blood sugar reading was like 165. That would be a 7.3 according to a comparison chart I saw. I realize that these charts can't always align, but I figured he would be closer to 7.3 because:
    1) I never let a high stay high too long. I test at midnight and 3AM, and I follow up again if he is high at 3AM. In other words, his highs are short-lived.
    2) I double check a lot of highs, meaning that the high number gets factored into his average meter reading twice.A low is never rechecked until after food is given and the blood sugar is rising again.

    I'm really not sure what to do. I feel like we are doing everything we can to keep his blood sugar under control. He spikes sometimes, but that is for things that I am either unable or unwilling to change. For example, he will get adrenaline highs in sports sometimes. We might also overtreat a low sometimes. Finally, the one thing that I can control but choose not to is the fact that I let him eat pizza and other things that tend to spike him. But as I said before, I treat highs quickly and always follow up. I figure that a lot of kids who have low A1C's have pizza every so often.

    Any suggestions?

    John
     
  2. Mish

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    well, it sounds like you're already doing what you are supposed to be doing, management wise, and you could make sure you're also prebolusing to avoid any after meal spikes which you might not see in your average, but otherwise here are some thoughts (and we're also struggling with weird high a1cs that don't come anywhere near matching meter/cgm averages)

    1) what meter are you using? just curious here
    2) this chart http://professional.diabetes.org/GlucoseCalculator.aspx is a little more accurate
    3) have you thought about doing a trial CGM run - or at least a blind CGM ipro through your doctors office? The feedback we got from doing this at least let me know that we weren't missing random lows and that we weren't doing horribly with spikes. none of which I knew on BG checks alone. And it led me to want to take advantage of that too more frequently. We still use it, and at least I have some verification that I'm not losing my mind when we get stupid A1c results back.
     
  3. selketine

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    We had a very odd experience with William's a1c number recently. His number is fairly consistent - and he uses a cgms and has for a long time now - and the a1c is consistent with the cgms data and the fingerstick data even.

    So we do his a1c as usual last fall and it was WAY higher than I'd expect - highest he has ever had - like 8.2 or something. I totally couldn't explain it and I asked the pedi endo if it could be a mistake. They said no but couldn't explain how none of his other data matched the a1c. That was literally the highest a1c by a mile that he'd ever had.

    His next a1c was back down to where it usually is and back in line with the data we have - which is way lower than 8.2.

    I don't know what happened there - just throwing that out there if this a1c is a really outlier for you.
     
  4. DsMom

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    It really does sound as if you are doing your best...and it sounds like you are right on top of things and doing a wonderful job. I would just continue on as you are doing (and don't worry about the pizza;)) and try not to get too upset about it. More stress is not what you need!;):p Perhaps it is just a fluke. Keep up the great job you are doing and see what next time brings. If you are concerned in the interim, perhaps you can try using a home A1c test to check your progress.

    Good luck...and go easy on yourself.:cwds:
     
  5. Connie(BC)Type 1

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    I skipped my A1c this month, my bgs have been all over the map, and the endo would have noticed and emailed me to come in, which I don't need to do. I know what's causing it(menopause) and that's not stopping yet, so i'll just continue adjusting!
     
  6. rutgers1

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    It was bothering me so much today that I pulled into CVS when I passed it today and bought a Bayer home A1C test. It came out at 7.7. It is still lower than I expected, but at least it was better than 7.9. I am still bummed, though. I know other people who are way, way less diligent with their kid's diabetes management, and I was really looking forward to having the hard work justified with a number closer to 7.

    Thank you for the replies. We'll keep choppin'.
     
  7. Ivan's Mum

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    Don't beat yourself up. Our last one was 9.2 :eek:and I had been sitting there smugly patting myself on the back for all my good work and waiting for the good news. There is just no way that he could get an A1c like that. All his numbers and the school routine make it impossible. I've decided that someone is breaking in and giving him sugar while he sleeps, then correcting him and leaving him in early hypo each morning.

    We have basically watched our A1c go from 6.9 to 9 slowly over the last few years. It's not like we don't know what we're doing, 6 years of this gives us a pretty good clue that we're doing it right, but... how the heck we got a 9.2 (after a 9.1 the previous one) is beyond anything we can fathom. We basal test, know that everything is correct and know he's not sneaking anything.

    I'm dreading that I can bust my gut working at it and he's going to be 9.3 next time (though, I've noticed since we've gone from novorapid to humalog, although there is no difference in how it works, our A1c has climbed since the change).
     
  8. Melissata

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    My daughter hasn't had a finger stick A1c in years, but just had one recently. It was the highest she has been in over 10 years, and totally unexpected. I know that most peds docs do them, but I have never really trusted them. I am kind of throwing that one away, especially since she is on a CGM. Her next one will be a blood draw with a new endo, and I can't imagine it will be that high.

    For the OP, what are you doing to try to manage the pizza spikes? Maybe that is something that you can work on.
     
  9. carol

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    Hello, this is my first post reply ever! I hear your frustration. If only diabetes was such that all we had to do was learn once and then were experts. The rules seem to change, adapt, ESP when we start to get in a comfortable routine at my house. I have a 9 year old son and this is what we try to do. He eats pizza, knowing it is tricky. I add 30% more carbs per slice and it dials him in without needing follow up boluses (hopefully). As far as sports, I don't remove the pump unless he is swimming. He can't take the time off the pump without a high. He can sip on a low calorie sports drink while taking breaks. We don't check bs at night unless we have control problems or illness. My husband feels if we do to much intervention we can throw off the big picture. I try to adjust the basal so he wakes up around what he goes to bed at. we try not to have my son snack at night unless he is going to bed on the low side. If for a couple of nights he wakes up higher than going to bed, I turn up the basal. We average between 6.5 and 7.1 for our son. It works for us, and I understand, any day diabetes will throw the curve ball and change the rules. Will be time to adapt once again

    Carol, son of Anthony, diagnosed April, 2010, pumping minimed since11/10
     
  10. Christopher

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    Welcome,

    I would have to respectfully disagree. I don't think it is possible to do too much intervention with diabetes. For me, the more data you have, the more knowledge you have, and the better you can manage this illness.

    Also, just because he goes to bed at one number and wakes up at a similar number, that does not mean he stayed in that area all night. He could have gone up or down significantly, and without checking you have no idea, and actually have a false sense of security. That is why I always check at night, multiple times per night. Diabetes does not play by any rules and there are a ton of factors that change things every day.

    All that said, each family must decide for themselves what they are comfortable with, and what works for them. I am not judging at all, just giving my opinion and what works for me.
     
  11. swellman

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    We had a similar experience 3 months ago at our last visit. I was sure the A1c was going to be around 0.8 - 1.0 lower than what the instrument said. So much that I insisted a retest which was somewhat lower but not where I had expected. Even the doctor commented that I was usually spot on on guessing what it was going to be. Hopefully it was an outlier as well as I am worried that it might be the onset of puberty completely changing how we have to manage BGs. We're going back next Wednesday so we shall see.
     
  12. Mish

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    I did the same, and ours came out way lower than finger stick - lower than I would have expected based on average but MUCH closer to what I was expecting vs office A1c.

    Our endo's office admitted they've been having trouble with the machines, and I wonder if this is something that is problematic country wide maybe with the supplies they're receiving or a production problem? It seems like a whole rash of people all of a sudden having very very strange A1C results. Next time I'm going to ask for a confirmation blood draw even if I have to pay OOP.
     
  13. Christopher

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    Is it really worth putting your child through an extra blood draw? Or do they have one anyway next time?

    I try not to get too worked up over the A1C anymore....It is just another number....It is not really going to change how I manage things. I am always going to try my hardest to keep her in range as often as I can, for as long as I can.
     
  14. Mrs Puff

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    I would probably fall into the "way, way less diligent" category you mentioned above. Ds was diagnosed around a 1.5 years ago, right smack dab in the middle of puberty. I learned early that trying to keep things under tight control wasn't going to happen. I gave up trying to analyze why one week pizza did not affect him but the next week it did. Sometimes it depends on where we get the pizza! His A1c was 7.3 last time. It was down from 7.5. I kinda take the attitude that the A1c is a little snapshot of how we are doing, and the pursuit of some kind of nebulous perfect score is not worth the stress. That being said, if are next A1c were to suddenly spike up to 8 or 9, there would be cause for concern! Until then, we "just keep swimming" and making adjustments when needed.
     
  15. selketine

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    Yes - it is very odd. William wears his Dex 24/7/365 so there was no break in the data - even for a day. It is fairly accurate and so far his a1c/fingersticks (we average about 7 sticks a day - so I know his Dex is usually in line) and cgms have all aligned within reason of each other.

    Our provider only does the lab draw (like from the elbow - no fingerstick) so I wasn't going to ask for a retest. I KNOW we are not having undetected highs.

    It was just very frustrating that they suggest I change this or that (honestly - stuff that barely matters - like have 5 carbs less for lunch) when it seemed like an error with the test. :rolleyes:
     
  16. Mish

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    nah, I just like getting my child poked. Isn't it fun for everyone? :p

    But yes, at our next visit we're getting annual labs anyway, so that's what I meant - that if it's whacky by finger stick I"m going to ask for it to be done by blood draw.

    And truly, I don't live by the a1c either, but when it's way beyond what it should be then something is wrong and I'd like to know what. Is it our test strips? Is something off in our management that I'm missing? Is it really their machine (which holds implications not just for me).

    But I do think that a way out of the norm A1c can be a perfect opportunity to assess the situation and decide what needs to change. If, like the OP, we already think we're at a certain point and then find out that we're not, well that calls for some detective work. Otherwise it's worthless to even get that information in the first place.
     
  17. Christopher

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    Hey, ya never know what people will do. There is someone here who is poking their child's fingers every 2 hours because the endo told them to do it, soooo.....:confused:

    but glad to hear it is the regular time for the blood draw.
     
  18. MomofSweetOne

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    Just out of curiosity, does anyone else find that the Medtronic CareLink data predicts an A1C about .4 lower than the finger poke A1C at the endo's? I'm just curious whether we're oddities. For each of the three times since we started with the pump/CGM, their predicted has been off by about the same.
     
  19. Mish

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    where does it show predictive a1c?
     
  20. ecs1516

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    Our endo checks our BG meter with their office one to make sure they are within a certain percent. Maybe they can check your meter next time?
    Just wondering if it is reading higher than it should
     

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