Wednesday, June 13, 2012

The Great A1C Debate

I'm going there, I am, to the often disputed, always argued A1c results.

I almost considered closing comments to this post but that wouldn't be my style. Please know I am not trying to get a rise out of anybody. It's just a reflection of my thoughts and feelings on my own A1c struggles after a Facebook conversation brought my mind to it.

A1c = Simple lab test that reflects your average blood glucose level over the last 3 months. Expressed in a percentage.

Most of us diabetics have our labs done about every 3 or 4 months. It helps us to get a handle on where we've come and more accurately how we've managed. A lot of people's thoughts on the A1c are, "It's just a number." 

I don't subscribe to that opinion. To me, it's not just a number. It's an accurate representation of my average BG numbers. Where we want to be is often up for discussion. Under 7% is ideal. Under 6.5% is where most of us will strive to be. To get an idea, we are drilled into our heads to attempt to maintain a 4-7mmol/l (90-120mg/dl) average BG. Every day, all day despite the myriad of coefficients and factors.

I don't normally publish my A1c. It's not that I'm ashamed or embarrassed, it's more because I, personally, don't want to see it written anywhere. I will tell you this though, I've never EVER had my A1c under 7% in 10 years of diabetes. Speaking of, next month is my 10year anniversary. Have I tried? Hell yeah, I've tried. But, I've never succeeded. Not once. I'm not saying that 7% is bad, not at all. I'm just saying that it's not good enough for ME.

I realize that the A1c result is not entirely a perfect representation of our diabetes management skills. Sure there are some folks who are either really high or really low all the time. The average of that would be pretty normal. So there ARE exceptions to the rule. But we also have to factor in our own personal feelings. 

10 years of trying for a sub 7%. TEN YEARS. If I average out the number of A1c lab draws I'm looking at close to 20 attempts. (I had to lower it to account for the few years I didn't test it). When do I, as a human being, say, "that's enough." How many times do I tell myself, "better luck next time" or "keep on trying" before it gets so tiring I give up? When do I let go of the guilt? I mean, I'm not an idiot (all of the time) and I know I am healthy and active. That's not what I'm talking about here.

How many times of hearing the same stuff over and over again do I stop feeling upset and disappointed?

I don't see it as "just a number." I see that +7% A1c result and I see an average BG of over 8.2mmol/l (+150mg/dl). When I look at it like that, it just becomes so much more real. We all know how some complications happen and that would be from constant elevated blood glucose levels. I see that I need to improve but I can't possibly imagine how to do things any better. I see a woman who will never get her body into "baby safe" mode. Yeah, I know I'm single but it's still there, in the back of my mind.

I celebrate fellow PWD who broadcast their A1c's in the 5's and 6's. If I had an A1c like that, I'd be shouting it from the mountain top as well. But inside I am an envious freak.

I go in a couple weeks to get my labs done. I now no longer expect anything from myself. I just expect the "usual". I dwell for a few days before slugging along. I've stopped telling myself to try harder because that blood test never lies.

Jeff says it right: "It's just a number that talks about my BGs relative to the previous months, but it's also a number that says those BGs aren't anywhere near where I've tried to put them"

That's exactly how I feel.

14 comments:

  1. When I was in my endo's office beating myself up for a 0.4% increase in my A1c (somewhere in the 7's), he told me something I found helpful. The complication risk relative to A1c is an exponential graph. So, moving from a 10 to a 9 makes a huge positive impact. Moving from a 7.5 to a 7, while "good," doesn't make that much difference. Not that he doesn't want me to do my best to even things out and keep the BG's down, but he also wants me to live my life and to keep the numbers high enough that I don't wrap my car around a tree. (yes, he warns me of this often.)

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  2. That little FB discussion on my "I don't wanna get my A1c drawn" status basically boiled down to people holding these positions (1) "Having this reminder every 3-4 months sucks and leads to judgement from ourselves and others." and (2) "Who cares what the number is? You do more awesome stuff than 95% of the northern hemisphere, so take the number, try to make some changes, and don't worry about it."

    I have extremely mixed emotions on this issue. My A1c was heading lower, but I know it's going to be higher when I get it drawn in the next couple days. And it's going to be higher for reasons that I can only attribute to the fickleness of this disease, which decided to change how my body reacted to insulin in the weeks after Around the Bay.

    I want to believe that it's "just a number" so that I don't feel so bad when it's higher. But I also need on some level to have a better number. (I mean a lower number.) I need that number partly so that I can worry less about complications, but I also need it so that I can feel like I'm actually powerful and empowered enough to make my disease better.

    I've never tried so hard to do something (get a lower A1c) for so long in my life (over ten years) and not accomplished it. And that's the thing about the A1c that I hate: It's a regular reminder of how difficult this disease is and how little control I feel I have over some important parts of my life... and how I repeatedly fail to do the thing I set out to do.

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  3. I agree and disagree with you :)

    I agree that striving for a good A1C is important. It reflects, most of the time, numbers that are in a good range. Like you said, a good number can also be the result of lots of lows. That's NOT good.

    My concern is mostly about what people consider to be a good A1C. My doctor wants me around 7. Lots of bloggers out there say that 6 is the number to strive for. Some people even try for 5. I honestly don't think it's safe for most people to aim for that. Neither does my doctor for the record.

    The biggest problem I have though is reading about people who beat themselves up over a bad A1C. It is a number and it only has as much worth as you give it. If you let it be the only proof of how well, or not well, you're doing - then you may be really disappointed. I try hard all the time to have good numbers. Sometimes my A1C reflects that and sometimes it doesn't. Such is life.

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  4. I have to agree. I think all of us who say "it's just a number" say that just to make ourselves feel better. But truth be told, it's not just a number. It is sort of a score card about how we've done. What I don't like is it doesn't show the variances, and that's where the problem lies. If you have an A1c of 8, and your BG's have maintained a 150-210 range over the past 3 months, then that's all well and good. But if you're getting it because you're 60-300 like a ping-pong ball, then that's where the problem is. I simply don't like that someone can have a great 6.5 with barely any lows, and for me to get it, I have to be low at least 2x per day on average. It sucks.

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  5. Getting my A1C drawn is stressful for me. I hated seeing the nurse put it in the machine, and then waiting 5 minutes for the result. Last year, I actually bought one of those "at-home" A1C kits so I could know the result before going into the office. It helped calm my nerves a lot. I think all of my nervousness came from having doctors in the past say, "your A1C must be between 4 and 7." My current doctor doesn't operate with the same philosophy. The past few visits I've actaully asked him what my A1C was because he didn't tell me. He cares more about how much I am testing and handling my blood sugars in relation to my running and other sports. I think I'll always be a little nervous to find out what my A1C is, but having a doctor that doesn't put much value in it helps a lot.

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  6. FWIW the only times I have had an A1c below 7 since being diagnosed nearly 25 years ago, that I can remember, were: 1) when I was completely bedridden after a terrible bike crash (broken bones--ribs, L2, clavicle) for 5 weeks and not exercising much for another 3-4, and had a totally regular schedule--A1c of 6.5 and 2) after my husband and I DECIDED to try and get pregnant. My first A1c in pregnancy was 6.5 and it has moved down to the low 5s since then. My experience during pregnancy is common. I am glad I didn't wait for the "perfect A1c" (below 6.5 or below 6 depending on the doctor) to make the decision to start trying to get pregnant. I did get it to 7, however; but honestly, as soon as there was any chance I might be pregnant, my vigilance rose to a new level and my control was tighter than I'd ever had. How? Testing 20-25 times a day (I am not kidding), correcting over 90 down to 85, and having almost zero tolerance for a high blood sugar (over 130-140) and increased tolerance of risking a low (CGM came in handy here). Most people also have more frequent lows during the 1st trimester so the pregnancy gives you a little boost. But anyway, I guess my message is that for me, being at 7 before we started trying to conceive was ok--good, for me, actually. I don't know if I could have gotten it down to 6.5 and lower before having that responsibility of pregnancy an actual possibility.

    That being said, I wonder how I will do post pregnancy. Keeping my blood sugars this tight definitely leads to weight gain for me, because I have to treat more impending or actual lows. When I am not pregnant, this is probably a big reason I might not be as aggressive about bringing my BGs down. That and because I really really hate feeling low. I have also found that if I get my exercise done early, and know I don't have to massage my diabetes in the right place to exercise later in the day, I am more willing to take the appropriate amount of insulin and extra corrections if needed.

    I do try to use the A1c in a way similar to my own daily BGs--as a guide on how I am doing and how to improve, but not a huge emotional verdict on my worth as a diabetic. I do admit, though, when I had my first ever A1c in the 5s, I was satisfied (as well as in shock).

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  7. I don't buy the "it's just a number...don't worry" business. I do worry, and I think it prudent to worry. After all, that number has some pretty serious consequences in terms of my health. It's a score card of sorts on my management. But I also know that some times, I can do all the "right things," and still get the "wrong result." I generally stay under 6.5% (and I have to be under 7% to ride with Team Type 2, interestingly enough...a standard not applied to participation with Team Type 1), but there have been times when it has crept over 7%. And I'm okay with that. I don't think it is as healthy but, like Anne indicates, there is a trade-off. I have an A1c of 5.4% now, but that comes at a price. I will correct anything over 100, and I do have more lows as a consequence. The extra insulin has certainly lead to weight gain for me, too, which is especially bad having LADA as I already present with insulin resistance. In short, I'm making it harder for me to control the BGs in the next 90 days thanks to the extra ten pounds or so. The good news is that I have a lot of room to let my A1c creep up a bit while I manage down the weight.

    And really, that should be the point of the whole test, right? To get an objective measure of control, find out what is working and what is posing problems, and then to make a plan. I equated it on Facebook to athletic training: You aim for a goal, put in the work, and hope you meet the objective. If you cross the finish with the time you were seeking, that's great. If you don't? It doesn't mean all that training was wasted. It just means you need a new strategy.

    Diabetes is dynamic. That makes it hard. What worked one month might not be effective the next. It's really about doing your best to keep yourself healthy and understanding that, like any other number, it's just one piece of the puzzle. You wouldn't base your whole understanding of health on your weight, your cholesterol, your blood pressure. Neither should it be based on your A1c alone. I think it's important to keep a holistic view.

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  8. Hmm... well, my dear friend, it's posts like these that make me thankful I got T-1 at such a young age (sorry to rub that in) because unlike you, I had 16-17 years of less than desirable Hga1c numbers, and at that time, I could have cared less about it. I mean sure there were days when I thought, oh crap, I'm headed for diabetes doomsville at a fast rate here, but for the most part, I lived in ignorant bliss and let my parents do all the worrying.

    I guess, what I'm trying to say here, is that while I do have better averages now, it hasn't always been that way, and I'm still nowhere near being perfect (I don't think we can ever be can we? Dammit!). And I believe, given everything you do, you will find that magic number. You're healthy and active as shit – how can you not!

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  9. A1c's around here equal massive mommy-guilt, so I get where you're coming from. It seems no matter how much I bust my ass, Bean's number isn't where I want it to be, where it 'needs to' be.
    I feel ya.
    Here's hoping with you for a good report in a few weeks!

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  10. I am so right there with you. Back in the day probably 12 years ago I used to keep my A1c's in the sub 6.5 range but I ate nothing but non-fat everything and low carb everything else. Then one day my doctor talked to me about the chart you have and said you know this is an average and if your average is 100 then that means you are probably running 60's to 140's. She said lets stop with this numbers game and raise your A1c's so that your daily range is more of a 100's to 160's because if you are slightly elevated over 10 years you might develop complications but if you get too low once you are dead. Then she showed me that even if your A1c's are 8.0 you are still in the "good" area. Ever since then I do like you and don't give out my numbers and don't want to hear anybody elses. I just want to know if everyone else is doing OK or not. Everyone with this disease is doing the best they can and I think no matter what your A1c number is, we are all professional diabetics. Who else can do a better job with our lives than us?

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  11. I just showed Doug your A1C graphic and he had a very good point. A low A1C is just as problematic as a high one, for different but just as serious reasons. But the colour on the chart that goes from red down to green makes it look like an A1C of 4-5 is ideal. It's NOT. So we think there should be RED at the top and the bottom, then yellow and then green right around 7.0. Not that this addresses many of the issues and questions you raised but I think it would help some people if they realized that too low is just as bad as too high.

    Great blog post today by the way, I've come back several times just to read the comments and discussion. You've obviously hit a nerve in the diabetes world.

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  12. I've had A1c readings in the 12-13% range before. yep. I'm not ashamed to say it because I want people know that I wasn't always in control - that it was very scary for me at the time and it was easier for me to deal with life as a non diabetic and just forget I had the disease altogether. Could it have potentially taken years off my life? yes. Since then, my A1c has gradually lowered.. 10%, 9%, 8% and in the last 4 years it has been between 6.8 and 7.2% the one time it was at 6.8%, it was after I had experimented with how low I could actually get it... denying myself carbs, checking my BG upwards of 12x a day, and losing a bit of weight, the lowest I've ever gotten it is the 6.8%... so yes, I can relate to that feeling of "envious freak" when you see other T1s with A1c's in the 5-6% range! However, here are a couple of thoughts:

    1) at what point does the lower A1c goal come before "quality of life"? I'm actually fine with my A1c being a low 7% if it means me having the occasional treat, not checking my BG every half hour, and not freaking out over a number that's out of range.

    2) the A1c is a measurement of an AVERAGE - it does not take into account the very damaging wild swings from very low to very high to very low again... my Endo has actually told me he'd be fine with an 8% A1c if I could get a handle on the wild swings and get more consistent numbers.

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  13. Great post, and even better discussion.

    One of the things that confuses me the most is when I feel like I've done so well, but get an A1C that is crap. Or, when I feel like I've done crappy, but my A1C improves. What a mind-screw!

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  14. Wow great post Scully! I agree with you. I take it seriously and realistically. You know... I had about 12 years of A1c's way over 7% before I dropped it below 7%. For me, quality of life has risen with every drop of my A1c because I feel better and for me, the risk of complications is such a scary thought-one that I can't handle. While there are no guarantees, I do enjoy some peace of mind that I didn't before. I have an A1c, like you know, in the low 5% range. I don't have a lot of lows even thought everyone assumes I do. And I notice a lot of little perks with that A1c that I had taken for granted during my first 11 years without diabetes. Faster healing, clearer thinking, happier moods, etc. I feel like I've had to pay a price for that A1c because I feel like I have to be really different from everyone. But overall I value a healthy body over just about anything else. And I know others are different and I think we do need to view things holistically, as someone mentioned. Also, I grew up with a sister who always had 7% A1c's and it made me fuming jealous. I was like the "bad diabetic" in the house and it sucked. Totally sucked.

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