Disappointment, perspective, balance

Monday, November 20, 2006 | 12 comment(s)

I got my A1c back on Thursday last week, but unfortunately, I've been so disappointed by the results and my appointment with my endocrinologist went so badly that I haven't been able to figure out what to say about it. So the best I could come up with is this ramble of a post.

I knew going in to the test that my glucometer readings were not all that different then they were before my last A1c
A Comparison

June Stats
days mg/dl # tests tests/day S.D.
7 145 145 20.7 65
14 151 270 19.3 67
30 148 563 18.8 62
60 150 1,141 19.0 62
90 150 1,658 18.4 65


November Stats
days mg/dl # tests tests/day S.D.
7 149 89 12.7 62
14 149 182 13.0 62
30 143 402 13.4 60
60 155 799 13.3 67
90 154 1,229 13.7 68

The most striking difference is that I've cut back the number of times I'm testing from almost 20 to just over 12 times per day. Other than that, the differences aren't all that significant, so I really didn't have any right to expect a lower A1c result on this test.

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test back in June, but for some (dumb) reason, I was hoping that my A1c would be lower and I would squeak through and hit the goal I have been striving for all year long: An A1c below 7.

Alas, it wasn't meant to be. My reading was a 7.1 -- unchanged from my previous reading in June.

I was completely deflated when my endo gave me the result.

My disappointment quickly turned into anger (which is really, really rare for me), and I became rather argumentative with my endocrinologist (who I haven't always gotten along with before). We then had a pretty heated argument. I was on the verge of storming out of the office at one point and she was on the verge of tears at another. It wasn't fun.

I tried to explain to her that criticizing me for having a "normal" range of 80-160 in my graphs is NOT constructive. She thinks that if I had the top of my range set at 140, I would have better control and perhaps lower my A1c. I, however, am absolutely certain that where my target range is pictorially is not at all correlated with my A1c readings. In fact, I think having too narrow a target range is counterproductive, actually. There's nothing that frustrates me more than seeing a cell in the OneTouch database all shaded red for a reading of 124.
124?!?!
That's a damn fine reading in my book! Regardless of the time of day! (That's why I created my own logbook and record things how I like 'em).

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She went on further to point out that I should be waking up with all my blood sugars between 70 and 100. That when someone is in the hospital, they try to keep all blood sugar readings below 110 (thanks, that's not very relevant right now, but I'll try to remember that the next time I'm hospitalized). That people with fasting blood sugar readings above 110 are being labeled "pre-diabetic" these days (again useless, NB: I AM ALREADY DIABETIC, NO "pre-" ABOUT IT!). And that I shouldn't have any post-prandial blood sugars above 140. She told me that while I think 70
I think to myself
"Of course she thinks 70 is a normal reading, that's because she's never been down at 50 or 40!"

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is a low reading, she thinks it's a normal reading. That blood sugar readings should have a standard deviation of 30. And the prescribed A1c target will likely be lowered to below 6 by clinical endocrinologist at some time in the near future. (Great, just great).

I expressed my confusion about the relationship between average glucometer readings and A1c results (like I've done before) and showed her the trends in my averages by time of day, and she actually told me that averages were not important, but that it was more important to focus on abnormal, individual readings in my logbook.

"Look here!" (she exclaimed while circling a peak on a line chart)
"Why were you at 256 at 10:30am on Monday last week?"

I DON'T KNOW! (Capitalization does not adequately express the decibels I'd like for that to be read at).
Shit happens!
What is this? The Spanish Inquisition?

Averages are what it's all about, in my book. And standard deviations too.

Toward the end of our appointment she told me not to focus so much on the numbers. That I'm a "model diabetic." That I'm doing well. And that I need to relax and not get so stress out ("Stress will raise your blood sugar levels" she so "helpfully" tells me). But what's the point of giving someone a goal and to then telling him/her not to worry about the numbers!?

She said I'm being a perfectionist.

Perhaps I am. So what?
Is that a bad thing, really?
Shouldn't we strive for perfection?
Isn't that what we are told (either implicitly or explicitly) to do?
And believe me you, there were 27+ years of my diabetic life where I wasn't a perfectionist, so I've got some makin' up to do!

Perhaps I'm overly obsessed with the numbers, but I can't help it. I'm an empirical kind of guy.

After a few days of thought, the dust has settled, and I've calmed down, I get to thinking:

On the one hand, 7.1 is NOT a bad A1c reading at all.
But on the other hand, that doesn't help ease my disappointment all that much.
I'm just so disappointed that I put forth all this effort and still wasn't able to hit the goal that was set out for me (thank you ADA & AACE), and that I more than fully took on. I feel like I failed.

But if I honestly ask myself: "Are there things I can improve upon?" The answer is a clear: "Hell yes."

But to what extent do I take it? When does the effort expended testing and logging blood sugars, counting carbs, denying food cravings, worrying about exercising, and working to be the "perfect diabetic" really start to diminish one's standard of living? Is it worth it? How can one know?

It's a matter of balance, for sure. But when do you say: "Okay, I can do this. I can sustain this level of attention to my diabetes, attain this level of control, and live the rest of my life on my own terms." Everyone comes to this equilibrium on their own terms, whether consciously or unconsciously.

Looking back on this year, I've made a lot of changes in my diet and carb counting, I now have accurate basal rates set in my pump, I'm exercising regularly, and these are clearly beneficial, and I should be proud of these achievements. And I realize that having consistent readings in the low 7s is a LOT better than the past 10 (or more) years of readings in the mid 8s.

But I think my game plan for the next year (starting now) is to attempt to take it up another level.

I have to get to an A1c below 6.5.
I have to know what it takes to achieve that goal.
And then I'll have to decide whether that kind of effort is something I'll want my life with diabetes to be like.

It may be that being that strict will be a completely miserable existence, and it just may be that 7.1 is the level of control that suits my equilibrium. I won't know for sure until I get to the other side and see what it's like there.

I'll be sure to keep you posted...

12 Comment(s):

Blogger mel said...

Honestly, I like the whole AADE normal blood sugar goals as an idea. Who of us (diabetics) doesn't want normal blood sugars? I agree though that the problem comes with the drop from 70 to 60 that makes us sick!

I encourage you to be encouraged that you've been able to keep your A1C down in the 7s and to keep your eye on the goal ahead.

Starting to identify key changes you can make and perhaps changing the parameters of your range ever so slightly and little by little could help.

The holiday season and the winter are always tough. I remember reading about studies last year that stated that A1Cs were elevated in diabetics for the winter months. I hope that you can overcome that this winter and see even the slightest of drops :) (or perhaps you come from a warm climate where it's less than relevant :) )

Blogger Megan said...

I can relate to your frustration, cause damn, diabetes is frustrating. It sucks when a1cs aren't what you think they should be.

I like to keep my fastings in the range your endo recommends, just cause I do feel like "healthy person" blood sugars are best for me. I also wouldn't be surprised if the a1c goal is lower. I know some doctors want a1cs below 5.5 or else they suspect diabetes (obviously in people not already diagnosed though).

I think the whole individual readings thing is stupid. My endo looks for trends (like you said, trees/forest forest/trees).

Overall though, 7.1 is nothing to be upset over. That's a great a1c.

Blogger Heidi said...

Kevin, I think your endo-appointment was just another excellent example to the fact that doctors and diabetics often seem to live in two different worlds when it comes to managing diabetes on a daily basis. And actually, how could it be any different? If they are not diabetics themselves, they don't KNOW how it is like be on a BG-roller coaster, or to have to plan ahead to try to avoid BG-disasters and only succeeding sometimes, or ....... I am really surprised, thought, that your doc seems to think that individual BG-readings are much more important than the overall patterns. That is just crazy!

Regarding your A1c and your goals for it, I would like to tell you that I understand your frustrations about feeling that your A1c doesn't move like you would want it to. I have been trying to change mine for years, sometimes even having been ordered to do so by my team. My diabetes nurse in particular would really like to see an A1c of 6.0 on me, which is part of the reason I was convinced to at least try the pump, but so far all the pump has done is to lower my A1c even more (I started with 5.8, was 5.7 after a couple of months of pumping, and my last A1c 2 weeks ago was 5.3). I would be overly happy with A1c's in the range I am at now if it wasn't for all those very low sugars that has tended to be even lower on the pump. So I guess what I am saying is that it may well be just as hard being on the “other side”, staying there without having too many hypoglycemic issues, or trying to increase it just a little bit to increase the margin for severe hypoglycemic reactions.

Blogger Lyrehca said...

I know you may not agree with this, but a 7.1 is a fine number. True, it's higher than what the associations say it should be, but honestly, it's only with the advent of pumping and fast-acting insulin that us Type 1s can even consider getting that low.

The numbers your doc wants are very similar to what's recommended for pre-pregnancy and pregnancy numbers, which I honestly thought were impossible before I started the whole pregnancy thing.

I've been able to (mostly, but not always) be in those ranges by eating very similar foods every day (high fiber stuff like oatmeal, not white toast for breakfast, etc.), and testing every hour and two hours after a meal and correcting immediately to 100 if I'm high. I also always test at least once in the middle of the night and correct immediately.

This tight test and correct method made me gain about 15 pounds in the year or so BEFORE I got pregnant, so know that's a possibility as well. Having more lows (and eating more LifeSavers to treat them) added to the weight issue, too.

Good luck!

Blogger Bernard said...

Kevin

You've got ambitious goals, good for you. But give yourself time to get there.

I wish my numbers were in the low 7's, but typically there in the higher end of 7.

What I like is the letter that my endo sends to my primary doctor. It generally has the phrase "diabetes out of control" in it. I need to call her to task on this one, it really makes me see RED!

Anonymous Chrissie in Belgium said...

Og I could just scream when I write a nice long comment and then it gets lost. Sorry you had such a hard time sith your doc. I have been there. I know what you are talking about!

Anonymous Chrissie in Belgium said...

Hi Kevin,

Me again! I will try one more time...... I will try and be concise! Listen averages are definitely of value and reliable, particularly as you are using them in conjunction with standard deviations that are not too large! Secondly, it is impossible to make a judgement on one blood glucose value without considering other related info such as what you plan to do in the coming hour! 70 before exercise is completely different from 70 after exercise or befor going to bed. Your 256 bg is just one test and it can happen to anyone sometimes. The doctor's remarks pissed the hell out of me too! Furthermore, first the doctor "beat you to pulp"/criticized you to pieces and then buttered you up and told you that you were a "model patient"! So which is it? I am getting the impression that she was trying to wrap up the appointment on a nice note...... Nevertheless, your approach of trying to reach an HbA1c of below 7 and then making a judgement on whether the kind of life this entails is WORTH the effort it demands - is a reasonable and fair choice for you to make. Each diabetic is different and must choose for themselves how they want to live their life. Achieving a HbA1c below 7 can be coupled with just too many hypos for some diabetics!

Blogger Johnboy said...

Kevin,

Sorry to hear of the disappointment. At the risk of sounding geeky, frankly, you sound very much like me when it comes to analysis of the numbers.

I may be biased, but I think that this is a benefit and not a detriment for you.

Your endo questioning a single reading of 256 is a sign that she doesn't really understand much about the challenges of T1. Besides that, I would like to know how many diabetics out there are really able to consistently see post-prandial readings below 140 without the assistance of something like Symlin.

I am mad just reading this post.
I think it may be time to reconsider your team.

Blogger Minnesota Nice said...

Perhaps she could go and stick her head in a snowbank for a few hours.

Judging by the intense comments that preceded me, this is a big issue with all of us.

I used to have a doc that took a big red pen and circled all readings that were off target and then silently handed my log book back to me - I always left feeling inadequate in every possible way and usually ended the day wildly stuffing treats in my mouth because I felt that the numbers would "never be good enough".

Sigh.................I don't know what else to say, except 7.1 is a lot better than 8.1 or 9.1.........

Have a Happy Thanksgiving.

Blogger Scott K. Johnson said...

Kevin, this post really hit me for some reason.

Maybe it's the fact that my A1C's are where yours used to be, and I can't help but to live my life looking over my shoulder.

But it's also the complete and total dedication that you've invested this year, and were yet again denied the reward you were after.

And I too feel the frustration that you express. How much do I have to do?! How hard to I have to work?! What more do you want from me?! It's all that type of thing.

To work so very hard at it, and not get where you were expecting to go. Devastating.

I also think that an A1C of 7.1 is great, and you should feel really good about getting down there. Look where you were before! You've made a lot of progress.

I also think you have a good plan going forward. But I can just feel the deflation in you.

Take the time you need to cope with it. But don't let it stop you in your tracks.

It is a hard thing we deal with. Really, really hard. No person should be asked to do what we are expected to do. But yet we find a way to make it fit into our lives. We don't stop living just to deal with our diabetes.

By sharing your story, and by taking the time to share your thoughts and insights with us all (and through your comments), you have made a real difference. Thank you.

Blogger Kerri. said...

I'm sorry I'm way too late on this post, but I re-read it again tonight and am still horrified at the way that your doctor talked to you. 124 mg/dl as a high reading? That's obscene. I'm proud as hell of a 124 mg/dl. Call me crazy.

You have made tremendous strides in your diabetes management. An A1c isn't the benchmark of all successes. I hate that I think of it as a report card for diabetes. But you are doing a remarkable job.

You'll achieve your goal. I know you will.

Thinking of you.

Blogger Rob said...

Really interesting thread, and feel the frustration on every comment. However, to some extent I see your endo's point, and as T1s we endlessly get frustrated with lots of different types of bad advice. We can be a difficult lot to please!

For instance, as a (non hardcore) low carb/ Bernstein follower, who like you works hard to manage my glucose, I get really frustrated with my endo/ nurse for implying its all unnecessary, that an a1c of 8 is the best that can be safely aimed for, I should really just give up & eat/ bolus whatever I like etc (honestly!!). I'm maybe still honeymooning a bit (7 months in) but have really worked my ass off to learn all i can about this crappy disease, and got my a1c down from 9 to 5.2 and slowly worked to reduce my hypo frequency. Now, things may get (even) harder down the line for me but having goals and building knowledge of how to get there is the only thing that gives us any feeling of control over this damn thing, no?

7.1 is clearly not bad at all, and pointing out a single high reading as problematic is insane for anyone that's even known a diabetic for 15 minutes. However, I'd rather have the medical community reflect the overwhelming evidence that an a1c target nearer 'normal' is better, if not always achievable for lots of reasons? My team seem stuck 15 years out of date in their advice! Trouble is, too often (as in your case by the sound of it) it comes from reading one article and little practical knowledge/ experience of how we might go about achieving it and what type of hiccups are 400% unavoidable along the way!

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