A1C Pass/Fail?

1

There seems to be an ongoing trail of similarities in many of the comments I have read of late in various parts of the diabetes online community when it comes to taking a child to their doctor. It seems one of the biggest fears is discussing our kids’ A1C blood tests.

Just some of the comments:

“Seeing my daughter’s endo tomorrow, I'm so worried because I know her A1C will be bad.”

“Wish me luck — blood test and A1C tomorrow… I know it’s going to be bad.”

And my favorite: “Anyone know how to lower an A1C in 24 hours? Taking my son to the doctor tomorrow, it’s not going to be fun.”

I think I missed the memo that MUST HAVE gone out stating that A1C is a judgment stick against those with diabetes and also against us, as parents, for “not taking better care of our kids.”

In a recent meeting with one of my children and their endo, the doctor stated, “Your A1C is not a very good grade. Just like in school, we have to do a better job.” We have been part of this practice for years, and they have had a sterling reputation. I was not just going to let this go by me.

“Excuse me, doctor, it’s not a grade. It might serve us all better if you explain how one would feel if we all worked toward better glycemic control, and how less swings might make one feel better. Let’s leave the pass/fail approach in the classroom.”

The doc’s approach changed in one big hurry.

Here is the deal. Stop beating yourself up over your A1C or your child’s A1C. At the very least, always remember that if diabetes was not the new normal in your household, this A1C would be nothing more than two letters and a number.

There is an incredible scene in one of my favorite movies, Good Will Hunting. This scene, I am convinced, is the reason that Robin Williams took home the Oscar for best supporting actor. It is the breaking point in Will’s life when Dr. Sean Maguire just keeps telling Will that everything that he is or has become is not his fault. He says it over and over and over again, “It’s not your fault.” The scene wrenches my heart.

To those who live with type 1 diabetes and to their parents (and for those who have type 2 that could not avoid it), I say, “It’s not your fault.” Forgive yourself and stop living as if your A1C is the only bar for which you are measured while living with diabetes every day. It’s not, it shouldn’t be, and whether it does or not is really up to you.

Now do not misunderstand what I’m driving at here — it is extremely important to strive for good diabetes management, and it is an ongoing battle. I also do not have diabetes and can only judge as a parent — I cannot even imagine what this battle means to those who live it every minute of every hour of every day. It’s exhausting. There is no better goal than to continually strive for better management. Things such as insulin, the artificial pancreas, as well as other important tools from meters and strips to pumps and cgms all play a role in helping caretakers and people with diabetes achieve better glycemic control — to FEEL BETTER!

But know this — the A1C is a gauge. Use it as another tool in the diabetes tool box, whether it is high or low. Work towards making the adjustment to help better gauge YOUR (or your child’s) DIABETES. It is NOT and SHOULD NOT ever be used as a reflection on anything… It is a tool. An important tool, but a gauging tool none-the-less.

And the next time someone says anything to you that makes you feel like the A1C is a passing or failing grade? Punch them in the nose and say, “It’s not my fault.”

I'm a Diabetes Dad.

If you so choose you can read my blogs here.

2

Thanks for your great post, Tom, and for adding to my understanding of the parents' perspective. I agree with absolutely everything you say and want to add to your quotes in the beginning of the post that they all demonstrate how much of a paradigm shift is needed in terms of our relationships with our medical providers. Worrying about a doctor's appointment because you know the A1C will be "bad" reminds me of a kid scared to come home and present his parents his report card with D's and F's. We are not children! (You are speaking from the parents' perspective). We are not "bad" or "good"; we are people engaging in an ongoing 24/7 struggle with D. We don't need chastisement, we need solutions or at least helpful suggestions! With the high cost of medical care and insurance we need to think of ourselves as "consumers" (of medical services). We are paying them for their expertise. I have a Type 2 friend who looked at my logging and said, "I'm not going to spend all that time keeping records for my doctor". I explained that I don't do it for my doctor, I do it for me. If we approach doctors with that changed perspective, perhaps they will respond accordingly.

3

Ditto for the great post.

I've always thought A1C is misleading as the ultimate arbitration on good control. It is an average, so lots of highs with lots of lows can give an ideal result, but control has probably been terrible. Much better indicators are blood glucose mean value with standard deviation. Mean as opposed to average is the value at which 50% are above & 50% below, so a few highs or lows skew it less. Standard deviation measures the variability. The statistician in me is coming out.

A1C is helpful but it shouldn't be the ultimate goal.

4

Good post Tom.

Unfortunately, too many Diabetics suffer burnout and stop treatment because of numbers. It seems to be always some thing. If not your A1C, its your weight. If not your weight, its your fasting reading. If not your fasting reading, its your cholesterol (HDL, LDL . or Trigs). We have far too many numbers in our lives and can obsess over them - the list seems to never end. At times, I wonder how many of them they make up as they go along.

Some how we believe we are supposed to be perfect, or told we have to be. While I won't go down the "Its not my fault" road, I'd rather say "I'm doing the best I can today". I don't care about tomorrow, it doesn't help me today. Bad days happen - in my case on purpose once a week as a reward for being good.

My attitude is this: I am John. I am not a number (A1C or otherwise) or a statistic. I have Diabetes. Diabetes does not have me. I have bad days and good days. If you are looking for, or expecting perfection, look some where else. I will only promise you two things: I will do my best, and I will not quit.

5

Two great promises John----we should all learn from your words.

6

I do agree, John. I am not a number or a statistic wjich is what medicine often seems to be based on. Also I am not a machine, however much I measure & weigh, there aere too many variables, x carbs needs y insulin doesn't always work. Perfection is unattainable.

I'm not a number or a statistic or a machine, I'm a person.

7

I appreciate what you are you saying here, Tom. And I more recently have tried to instill that notion instead of beating myself up over my A1c readings. It should be treated just a tool. However coming from almost 31 years of those readings, they are treated more like a grade from many medical professionals so it's hard to escape that feeling. It's so much easier to accept the "grade" when your A1c is good rather than when it is higher than you'd like!

8

Love what's been said by all here ;) Zoe, I think not only a paradigm shift in our relationships with our medical providers, but for ourselves too. I do occasionally fall into the numbers 'game', and always feel much better/relaxed when I pull myself out of it.

9

tom, i cant thank you enough for your post. i am 11yrs on the pump and did not even know there was such a thing as an A1C until i started using the pump. i have been D for 25+yrs; can you believe that? thats 14 yrs w/out ever knowing i had a "tool" by which to guage my BSs. not knowing was, well, "ignorance is bliss." once i became familiar w/ this darned A1C # i felt either like a failure or a success story. but i knew that every time i had my blood drawn i felt panic surge up from my belly to my throat. i was either "good" or i was "bad" and thats how i also looked at the numbers on my meter. this was how i judged myself. UGH. what a relief that this forum exists. i am very new to it, but it has already helped me emensely. so, again, thx a zillion.

10

I think the DOC has had a HUGE impact on this whole issue. With sites like this and others where people regularly post their A1c results, it's soooo easy to compare. In fact, I had zero idea what other Type 1s A1c numbers might be until I was around 23 or 24 and joined the DOC. Up till that point the only comparison I had was my own previous results, and in fact that's how I judged things—my A1c went up or it went down. Now I have a tendency to compare it to what other people have and be like, "They must know something I don't ..." I don't tend to judge MYSELF based on it (because I am not defined by diabetes and it's not even the biggest health issue I handle on a daily basis), but I do compare how I'm doing a lot to other people, which isn't good.

11

I don't have that problem but I do ok so my doctor sort of pats me on the head. I'd last run up in maybe 2007ish, I had started working out a lot more and eating a lot less, no plan or talking to doctors, just totally guessing and my A1C went up so my doc was "concerned" but I had dinner w/ my friend's wife who had a pump, was like "it's the best thing ever" and I decided to try it and it fixed things really easily. I was really motivated and in a good place to do well. The doc at the time did a very good job getting very close to the rates and ratios I needed and it worked ok w/ my personal philosophy of doing insulin like something I'd buy in the parking lot at a Grateful Dead concert so things have worked out. If I doctor told me I was "bad", I'd ask him what I should do. I don't think a lot of docs are very good at precise adjustments, from what I've read here. Do they say stuff like "test, and then test again in 15 minutes, to see how it's going..." Do they help patients fine tune doses? Do they talk about food realistically? I have noticed that none of my doctors are very chatty about food and, if it comes up, they'll offer the dietitian. I almost wonder if they get points or bonuses or something based on referrals for food questions.

I think that these elements, other than the cost of enough test strips to get data from and decent software to analyze it, are mostly communication based which is sort of free but I also think that a lot of doctors dump the communication task off on nurses, many of whom it seems are sort of Nurse Ratchety about it, being sort of "you are bad, fix this" when the doctors are causing the problems by not doing their job in the first place.

I can't wait for the ADA meeting in Chicago next year. heh heh heh...

12

very well said diabetes dad! i think the A1c is a good guide so pt and doc can check in to see how things are going but that is all. bringing your child to the endo should be a positive experience discussing what is going RIGHT and what can be improved. of course making the child feel like a person and not just a diabetic with lots of good and bad numbers is a huge plus! we recently switched endos and could not be happier with how jacobs doctor makes him and us as parents feel. we realize that we are his 'doctors' and the endo team is there to support and occasionally direct us. diabetes and all patients need to realize they are the leading player in there health, taking responsibility for learning as much as one can is ones 'job' as a person or parent with a child with a chronic condition. diabetes like life should be managed one decision, one day at a time! thanks again for voicing that sentiment so well. amy

13

Great post Tom and I echo everyone's sentiments here as far as A1C's being a tool and not any measurement of success or failure. To be honest when I was diagnosed in 1975 A1C's did not exist and the tools and measurements for even something simple like blood glucose were not very accurate. One shot a day and flying blind was certainly a whole lot simpler than the 5+ I do now and the onslaught of numbers and information at every appointment.
I also agree with those who say the medical profession needs to realize that we are medical consumers and as such a fairly large consumer group. I appreciate a doctor, endo or CDE who understands that and knows as a consumer if I do not feel I am getting my money's worth I can always shop around. These medical professionals work for me and I certainly do not expect anyone who works for me to make condesceding comments or snide remarks about how I am doing my job as a PWD. I would not accept that from my employees and I certainly would not accept it from a medical professional of any kind.

14

Great post. It reminds me of what a counselor said during a program at the Joslin. Your meter is a compass - not a testing device.

15

Loved your post Diabetes Dad.. We are not defined by the "goodness " or "badness" of our A1c's!! and Still_ young-at heart, I agree with the Joslin quote. I will adopt that attitude: " My meter is my compass!'

God bless,
Brunetta