Friday, April 20, 2012

Sharing A1C's? It's complicated.

I read a great post over at The 'Mine today about A1C's andthe efficacy of sharing them.  I began a comment on their blog and after the second paragraph realized I should probably take it over here.

What is an A1C? says this:  Hemoglobin A1C is the amount of the protein hemoglobin that has combined with glucose in a person's body. Diabetics test their hemoglobin A1C levels to monitor the average amount of glycosylated hemoglobin (glucose attached to hemoglobin) that has been in their blood over a two- to three-month period.

Basically, the A1C is thought to give you an average blood sugar number from the past three months or so.  It is considered in wider circles to be, "The diabetic's report card." 
Or in my case, "The mommy report card."

The thing about an A1C is you can get a number a couple ways:

By having sugars go up and down in wide swings.

Or by having them vary in smaller swings up and down.

Both can yield the same result.  Both have the same average blood sugar number.  Both have their own story.
One can also achieve a certain A1C from being low most of the time, or by being high most of the time.

I think that is the most important thing to note here:  There is a story behind every A1C number. 

So is it a good idea to share said number without sharing the story too?  Unfortunately, I think there is no hard and fast answer to that one.

There are the amazing A1C's.  (That number varies according to who you are and where you are in your life.)  If one receives the news of an amazing A1C, or even a better than expected A1C...doesn't one want to share this information with the world?  Can we fault them for wanting to?  Absolutely not, but the problem lies behind the story.  The way to that amazing A1C could have been reached in four different ways.  1) They are obsessive about blood sugars and check themselves or their child every hour on the hour.  Their life is completely absorbed in numbers and perfect A1C's.  2)  They have balance.  They or their child is not growing.  The numbers are falling into place like a magic puzzle.  There aren't too many lows, there aren't too many highs.  Nirvana.  3)  They are CONSTANTLY battling lows and spend their life feeding them.  4) Luck. Divine intervention.

Now writing down that your child has an A1C in the 5's or 6's  can get you the adulation you deserve, but it can also give many people the impression that this should be easily attainable.  "If this family can do it, why can't we?"  The fact is every person and child is different.  Every person reacts differently to food.  Every person reacts differently to insulin.  Why does my son B have the higher A1C of all my boys EVERY SINGLE DANG TIME?????  He has the same brilliant doctors, he has the same diet.  He has the same mother telling him what to do.  He is my most conscientious diabetic.  Why must he always be higher?

Because we are not the same.

A1C's.  Blood sugar numbers.  They are not one size fits all.  What works for one person may not work for another.  B can eat pasta ALL DAY LONG and not spike.  L on the other hand goes through the roof.  It's a crapshoot for J.

Comparing is dangerous.

But support is not.   In fact, it is essential.

Some people have spent years fighting to get their blood sugars down to their personal holy grail A1C number, and once they get there, don't they deserve a cheering section?  Some people can't get their or their child's A1C below 10.  Shouldn't they be able to share that heartache and receive the unwavering support they need so terribly? 

There is no easy answer to this one.

Sharing is important.  But it is important to share responsibly. 

 And as with anything in life:

Buyer beware.  There is a story behind every A1C number...and trust me, it isn't a short one.


  1. Great post! I struggle with comparing my self to others and this is one of those things that I have begun to learn the hard way is a lot more complicated that just achieving a great number.

  2. Oh, Meri!! I REALLY needed this today! Thank you for sharing (even in the midst of your unbelievable life!).
    I have been beating myelf for J's A1c. He doesn't even go again for a few weeks. I just dread that we are ALWAYS "barely in the safe zone." I hate those "report cards." I hate how we are congratualated when it is good and told it's not our fault when they are ...not good. Am I responsible or not?
    The last 6 plus months have brought HUGE changes in his behavior related to BG. I'm lost at what number to begin preventing a low. Today I depended on his attitud +BG+ IOB - and it really didn't pan out. I felt like such a failure!
    I LOVE and VALUE your perspective: you do this times 3 in 1 house! That means you really see this unfold from person to person. Thanks, Girl!

    1. "congratualated when it is good and told it's not our fault when they are ...not good. Am I responsible or not?" <---EXACTLY!

  3. Well said, Meri! It's hard not to compare those fickle little numbers. Learning to support one another without judging ourselves or each other is important, but not always easy. When I read of other people's sparkling, rainbow crowned A1c's in the 5's or 6's, I do admittedly feel angry at myself that we aren't achieving that right now. But it motivates me to rethink our routines and ask myself where I can make improvements. =)

  4. I have always thought that everybody's diabetes is different. Since you have three of them in your house this is definitely proof that despite our efforts, every body reacts differently. I am happy for the mom that tells me that their child never has highs or lows and is almost always in the 100's, but I must say a part of me is extremely jealous. Even though I know this is not possible for my child, I definitely would love it if we could acheive that! Reading this post helps me to accept my child's readings a little better and just do the best I can without tooo many judgements on myself.

  5. "There is a story behind every A1C number". Abso'freakin'lutely. I learned this through the DOC and it has served my well. I write about Ellie's mostly for my own documentation and tracking, but I realize putting it out there opens me up for criticism or envy. I try to ecplain the history behind her A1C and talk more about the trending, as down is most of the time better than up, up, and away. Thank you for perspective and gentle reminder for each person (all types) to read each number with a hige ol hunk of salt. Love you, sweet thang!

  6. So true! Of my three sons, two have fairly similar physiology. Their BGs bounce up and down like yo-yo's, frustrating everyone. OTOH, our 18 yo son, who was diagnosed last about three years ago, seems to have some pancreas left. Not only are his BGs less volatile, his BGs are below 200 nearly every time I look over his shoulder. So guess who has the lowest A1C? NOT the one with the steady, good BGs, who still runs an A1C of about 8.0. Its very strange.

  7. I LOVE LOVE LOVE the way you have explained it here. Sharing A1c's is a touchy thing. The hardest thing for us to do is to NOT take it personal when someone has a "better" a1c than another. But that's what has to be done... to NOT take it personal. Congratulate (or HUG) them for their awesome a1c, but also learn to congratulate yourself, even if yours is higher, if you KNOW within your heart you have done your best. It has taken me a LOOONG time to see that. Just as you said...every a1c has a story. Mine was high (9) this past draw.. but you know what? I was also doing my best to kick butt as a new mom too. It wasn't my best, so I wasn't proud of it. This next one? It can be a 9 too, but I'll be much prouder of it because I'll know that I've done the best I can do for now. :-)

  8. Great Post, for a year or so I was struggling with K's A1C. Always in the 8.5 and higher range and I hated to see someone post on FB or their Blog anything about getting an A1C in the 5's, 6's and 7's. I'd get a little jealous (but try to hold it in). I hated when someone would post about being in the 8's and upset about it, hated when someone posted about being in the 8's or 9's and other commenters sometimes not so nice remarks or advice. Then recently someone posted on FB that her daughter had an A1C in the 8's close to what my daughter's last one was and I commented something about "is it wrong of me to be relieved that you guys have the same number as us, I get so tired of hearing about all the 6's and 7's!" She wrote back that "it's all relative" which I KNOW it is, but my feelings sometimes get the better of me.

    And then last week we got our lowest A1C ever and I was so happy and proud of ourselves that I of course posted it on FB with the explanation that that "great" number also came with 17% of the time we were checking she was low. Sigh, always a story behind it, and it's all relative, and it sucks that we even have to think about things like A1C's for our kids (or the PWD's have to think about it)

  9. This is exactly why the A1c no longer means "anything" to me. The only thing that matters to me is the numbers I see on the meter and if Im doing what needs to be done to have them the best they can be for the time being :) HALLELUJAH!!! What a weight off ones shoulders! Awesome post Meri! (Im in constant prayer for you and yours!!)

  10. agreed...we actually don't make a big deal about A1C's at all, but I feel a bit of relief when things turn out a bit better than I think they may :) I appreciate hearing how your three boys under very similar conditions react so differently to foods and activity, helps me see that no matter what it isn't all under our ability to control. :)

  11. I truly hope that parents who have a newly diagnosed child will find this post.
    Even as an "older" (ahem...) diagnosed adult!, your posts have helped me to realize that sometimes, it's not me, that d-stuff just happens.
    Hugs and prayers for all of you.

  12. Loved this...the first thing my pediatrician told me when Emma was diagnosed was not to live and die by the a1c, that it's just a number. I didn't even know what that was at the time, but it was good advice!

  13. The week after Sugarboy was dxd I found the CWD website - I registered for the FFL conference and it changed our lifes for the better. However - I also found the forums - PLEASE do not get me wrong I do love the CWD forums (although I ahven't been in some time - FB, Twitter and Dblogs keep me well stocked with social media) BUT I have always hated how posting A1Cs (something I never did - honestly out of shame {a condition brought on by those posting "wonderful" A1Cs}) was like putting a bowl of sugar water on the top of an ant pile. While many users offered congratulatory comments others would attack - "that's too low, that's too high, your a finger pricking nazi, etc etc etc" I am sure it is the same for any social media in which A1Cs are posted. Don't get me started on what would be said to the parents that didn't do night time checks or to those that do. In my heart I believe that all parents of cwd has good intentions and many believe that their way of doing things is the best (and maybe the only) way to do things. I am glad those people are so confident but also worry about them. I am more of a "hmm that sounds interesting, I might try that or hey maybe try this" kind of person although mostly I am leary at offering any medical advice. Anyway I think I digressed - I can't add anything to your explanation of A1Cs or how they should be viewed since you covered it all so well - I just wanted to say thank you for writing it out. And I want to echo Colleen and say that I do hope other parents of cwd find this post and really "hear" it.

  14. Thank you so much for this post! I've been working so hard to get my A1C's down for the last few years and I've made significant improvements. But when I log on and see that someone is so discouraged with their 7.5, it feels like I'm failing. That person has every right to be discouraged, but it makes it tough for others. My A1C's are always higher than my Dexcom averages would indicate. Perhaps it's because I don't have a spleen, which can affect the life cycle of red blood cells. Bodies vary, no doubt!! Wishing you all the best and thanks again for this post.

  15. Very thoughtful post. I've formed the policy of not usually sharing my A1c's online. Partly this is for the reasons you give. But, as a meds-only T2 currently blessed with pretty good control, I have trouble feeling that a good A1c is really that much of an accomplishment. Thus, I fear that posting my A1cs might seem like 'bragging' to an insulin-dependent PWD (of whatever type) when they're likely working much harder than I am. The flip side of that is that my goals for my A1c may come across as trivial.

    So, generally, I post only where my A1c is compared to where I want it to be and how I feel about that. In my opinion, those things are what are most relevant anyway.

  16. Nice perspective. Thanks for writing.

    I do share my A1cs. I always have. Before the internet, I shared with friends that had and diabetes. I shared with people who didn't have any clue what the number meant. It just didn't seem like a big deal. It was just a number in time. I started reading Scott J's blog, and saw that he posted his A1c's as historical information. I thought it was a good idea... a central place to keep track of my information.

    Until I read Allison's post on d-mine, I didn't realize how this might upset some people, or make them uncomfortable. It certainly wasn't my intention.

  17. Perfect timing for me to read this as I was just yesterday lamenting over the fact that Bean's A1c will surely be higher when she goes in for her appointment in a few weeks because the past couple of months have just been crazy! I know I just have to 'let it be' and not beat myself up over it because I know I do what I can do to help keep her BGs in check, but sometimes that doesn't mean that my efforts are going to pay off!
    Thanks, as always, for sharing...I think you just need to move into my head so you can be my inner voice!

  18. Bravo! You could average together all of the boys' A1c's to make it even more random.

    When I shared our A1c, I kind of knew it was rude but didn't really understand why. Now I get it.

    I am so, so curious about numbers. I could read other people's BG charts and ratios all day. I don't have much emotion attached to the A1c (yet) but do feel like a jealous monster when I hear of a 1:80 I:C ratio or 0.025 basal rate.

  19. I stopped sharing E's a1c a long time ago. She even had good ones, but I hated the fact that *I* was rated as a parent based on a single number. On the internet it always seems to be a huge competition between parents to see whose kid has the best a1c. Now that we are firmly in her teen years, her a1c's aren't all that great, but a lot of things factor into that. She does 99% of her own care and is away from me 8 to 12 hours a day (depending on if it's softball season or not), hormones, peer pressure, etc. I don't beat myself up if she has a "bad" a1c and I certainly don't make her feel bad. I just use it as I would her blood sugar numbers...what do we need to do to improve. I don't need a pat on the back from the DOC if she has a good one, and I don't want to be labeled a bad parent if she has a "bad" a1c.


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