The A1c is not meaningless to me because the number tracks very well with my average BG. Logically, therefore, I should pay attention to it. Now, it doesn’t track well at all with what A1c/BG charts say, unless I keep in mind that there is a huge range of average BG versus A1c. In other words, a chart that says my 90 day average BG of X should hresult in an A1c of Y carries a lot of meaning when I look at the range around both variables and see that my numbers fall comfortably in the range of what is expected for humans with diabetes. It means that, whether my A1c is 6.5 or 5.5, I can take comfort in the fact that my BG meter is not just a random number generator. Logically, I should expect a certain range of A1c based on what my meter is telling me. That’s huge.
I don’t want to be reduced to numbers any more than anybody else. However, the numbers we get back from the lab are the only reliable, quantitative, measures of our control over time. We just have to understand what they can tell us and what they can’t. Logically, I should want as many as possible to give me as much information about my condition as possible so that I can be as responsive as possible.
The problem is that they are my numbers and I want them to tell me good things. I get emotional about that.
I find more inspiring than the A1C (although it can be quite inspiring) is people like you Marps. Its really tough to take control and rail again the Med community sometimes.
Kudos to you for taking a proactive stance and getting your A1C to a point you want it at. I know how good that can feel. I worked 25 years at it. =^)
Im with Natalie all the way on this, you deserve a pat on the back.
I disagree Onesaint, Danny hit more than a homerun with that one - more like out of the ballpark! Or is that still considered a home run (a non-baseball person asking here!).
I hit the “5s” with my last A1C after years in the 7s and 8s and some 9s,10s,11s. I got on a pump and CGMS, while I have always known what I needed to do these tools helped tremendously. I agree with Danny that there wasn’t much offered in the TU 5 club for me.
I don’t stress about my A1C now what I focus more on is lowering my Standard Deviation. I think that combined with a low A1C shows good control.
As far as the A1c, it’s NOT just the blood at one time in one place. The red cells are like little savings accounts, and they accumulate glucose molecules on them, day by day, as they age. So they really do tell the story of your past average glucose levels, depending on how much you glycate.
The average of your meter REALLY depends on how much you test and when, so it may not be very accurate. For example, most Type 2’s are told to test upon arising, and before meals (and they’re often unable to get more strips than that, if even that many). And they usually come down by the next meal, so their meter TOTALLY misses the high spikes they usually have after meals. So if they only looked at the meter, they might think they were doing very well, when in fact, those high spikes are contributing to complications down the line. (And one of the most common complications is early heart disease, which can kill you absolutely without notice!).
Very few people have the time or inclination to test as often as would be necessary to get a reasonably accurate meter average. When an accurate CGM comes out, that would solve a lot of the problem, but it’s likely to be very expensive, and probably not available to Type 2’s and those without good insurance.
So, for the moment, we’re dealing with a package of flawed tools, and I think the doctors are doing the best they can with what they’ve got. Well-educated and pro-active diabetics like you may not need the doctor’s advice, but what about all the ordinary people on the street?
Personally, I do fret about my A1C. I even asked to witness the A1C machine at my endo’s office do my reading next time. Regardless of how much you like it or how much you believe in its accuracy the A1C; people will categorize you based on its reading.
Like some TUers, I am somewhat skeptical of the medical community. It has gotten to the point that a doctor or nurse needs to show me that they have a necessary level of understanding of T1 before I will bother to listen to any of their advice. That being said I like my endo well enough. She has a great textbook education of type 1 and sees enough type 1s that I listen to her and may do what she says. The big thing that I value from my endo is her objectivity that can sometimes set me in the right direction.
I think the A1C does an OK job of giving your average control for the last 2 to 3 months. I have been pumping for approximately 4 months now and have found myself attached to some of the carelink reports. Specifically, the Pie charts, BG and SG averages, and the standard deviation.
My big wish is that they could have a uniform test where my endo office’s A1C would yield the same result as the phlebotimist’s A1C and not differ by 0.7%
My two cents:
I know for me it made me feel absolutely worthless as a 8 year-old child. I had a doc that used to speak very harshly to me and compare me to a “perfect” patient of his all the time. “Why can’t you be like xyz? She always has a perfect A1C,” and so on. I was so scared of docs and depressed that my blood pressure would skyrocket during my appointments. I felt like I was a bad kid. Later in college, I met “Ms. Perfect,” and she told me that the same doc used to do the same to her but using my name. I think it got in the way of me seeking better medical care earlier in my life (due to being afraid of docs). Now, I trying to learn how to get rid of the blame game and approach it scientifically. I think that’s what is important now: use the data scientifically, rather than attaching emotion to a number. It’s sooo hard, I know, but I think doing so breaks down emotional barriers to good care. HUG YOURSELF!!!
-Bunny
Yup, out of the park is a home-run, because by definition, no one can catch it to put the runner out.
I don’t remember exactly when I found this group, but it was after my coma, when it finally hit me (I’m slow!) that diabetes was for real, and that I really COULD die of it. We don’t have any Type 1 groups (except the pumpers’ group, which is poorly attended) in my community, and the only exposure I really had to diabetes community was Type 2 groups and also on e-mail lists. While there was some good info on the lists, it didn’t make the impact that Flatliners has. Which leads to how motivating I find the CGM.
I do regret that many people who could benefit from CGMs are unable to get them – I am so lucky!
What your doc did was so WRONG!!! Little diabetic children deserve all the support they can get, because life is hard enough for them already. I really wish I could undo the damage!
But I want to tell you you’re absolutely right about getting over the guilt, and not attaching emotion to numbers. You just do the best you can, and take one day at a time, and that’s all that REALLY matters. Of course, you can always be on the lookout for new information that may help you manage your diabetes, and if you have a good endo, they will cooperate with you. TuD is a treasure trove of information, so keep on reading, and talking to people!
I had the same deal, Bunny. “The best juv. endo in the city” would yell at me why cant you be more like XYZ. He ran the diabetic camps, support groups, etc. Boy did he despise me. For a long time I turned a lot of that inward and felt like investing in my self and my future was worthless. Its not so. Those Dr. are just really really bad people. I was fortunate enough to have the chance to curse at him years later.
Really the only thing for me thats ever made all the rubbish Dr.s, their scare tactics, and blame game become null, was getting my BGs in control (thats a recent thing too). Now, they cant say anything. My new endo said 150 carbs is a must, I showed her my results, mute argument. =^)
It was just a comment in a random discussion we were having. I thought it hilarious though. To think, they tell us for years, we all need to depend on this one number and them to say, whoops! It just cracked me up.
The A1c measures your average glucose reading over the course of 2 1/2 - 3 months time based on how your red blood cells appear.
I test close to 10 times per day, so my meter reads the majority of my spikes and dips… but honestly, I’m testing when I’m not feeling well- which means if I’m having a high reading… I’ll be testing a few times in 2 hours, which will raise my average based on my meter readings when really I was only high for the space of 2 hours.
Same with lows. I’ll test more to make sure my lows are correcting, but how long am I actually low? 1-2 hours time. But since I tested more, my meter is going to average those into the main average and it will essentially bring down my meter’s average glucose level.
I check my weekly, 14-day and monthly meter averages a lot. This past week I’ve been really controlled and have achieved a 114 BG average. I’m hoping it stays this way for a while and I get that covetted 5.? % A1c
I test my endo’s and doctor’s and even ER doctor’s knowledge of T1 before I will take any of their advise as well. If I dont agree with what they’ve suggested, I likely will not do what they say. If they are completely off their rocker in T1 knowledge and only presume to know, then I quickly find myself another doctor.
Im the same way, I use a CGM though, so I check highs. lows, and for verification. About 8-12 times a day. That said, I often wonder about my averages and how they are effected by my double testing or checking every 15 minutes. Also, I worry about sugar on the fingers a lot. When I get an off test from water or glucose on the finger, I think $#% there goes my avg. I really wish there was a way to take those snafus out. I dont think the CGM is completely accurate either. Generally speaking Im off by 10 points at any one time.
Nice work on that average. Hope the month comes out like that too!
Thanks onesaint! I had the same issues with CGM. Mine was always off sometimes by 100 points. I would wake in the middle of the night, panicking because my CGM was screaming at me. Then I’d test and my BG would be in the safe zone of 90, flatlined. It was really frustrating. I started having nervous breakdowns. Now I’ve loosened the strings, have acquired better control due to turning off the CGM and listening to my body.
haha. Easier said than done! I definitely went through some CGM withdrawals for a few weeks. It was really cool to see how my body reacted to foods and such during the day, though. I definitely learned A LOT from the CGM. But, I doubt I’ll go back to it anytime soon.
I hope the CGM is helping you to stay in the best control. I’m working hard on it and I know pretty much every diabetic out there is too.
may not need the doctor’s advice, but what about all the ordinary people on the street?