Do A1Cs cause too much stress?

Type 1 and LADA
61

I’ve said it before and I’ll say it again – A1c is a very individual measurement, and you can’t compare one person with another. You can only compare yourself with yourself. People glycate differently, so some people have an easier time of it than others. My 6.3 may be equivalent to your 8.3 when it comes to our actual BG averages. That’s why I went into a coma at 10.7 when other people are walking and talking in the 14’s.

All you can do is your best, and if that’s what you’re doing, nothing else matters, no matter what anyone says!

62

While I agree with you somewhat, that sometimes A1C’s don’t accurately reflect daily events, I used to get A1C’s easily in the low 6’s, but my #'s were ALL OVER the place… I had swings from 30 to 300 almost every day, and it was hard to live my life that way. I was not in what I would have considered good control, yet my endo was pleased as punch with me because my labs always looked “perfect”… no one was really concerned with my meter and what it showed, even when I brought up the problems I was having - THAT was frustrating. There is nothing quite like telling a doctor you are struggling, and explain why, and they blow you off because your labs are “great”. I even hit the 5% club once while under her care… and trust me when I say that I was NOT in control at all. I fired that endo soon after, because I was just fed up with their lack of care.

Now (and 5 or 6 endos later… I had a few years where I didn’t stay with a doctor more than a few months), I tend to hover in the mid-high 6’s, with an occasional low 7 and I am okay with that - because I don’t have the extreme lows or overall variability that I used to have, so I feel like my control is much “better” even though my A1C is a bit higher than my doctor would prefer (she’d like me right around 6.0%). I don’t really care about getting mine lower than this… because for me, it’s where my comfort zone is. I wouldn’t want to go higher, of course, but I don’t stress out about it either.

That said, a higher A1C (I’ll be generous here, say over 8%) always indicates poor control… there’s just no getting around that because it’s an average. While it is possible to mask or hide highs with lows and pull off a reasonable A1C, if you are high a majority of the time, your A1C is going to show it, and there really is no taking your way out of that one. Wild swings from high to low and claims of being “unable” to do better absolutely indicate poor control to me - and I say that because I have been there. It is not a judgment for anyone out there who is struggling, but poor control signifies a situation where something just isn’t working right… and I can say from personal experience that it’s not always the patient or the tools they are provided with, sometimes the D team themselves can have a HUGE impact. I went through a really difficult struggle with allergies (to all insulins) and problems pumping last year, and it was horrible, but I made it through, and it was with the help of a very positive D team.

I have NEVER been made to feel by my current endo (or any of her staff) that if I fail to meet her goals that I have “failed” in any capacity - if my A1C is higher, we discuss ways I can improve things, or why whatever we are trying isn’t working, but it’s always in a positive way, even if I am beyond frustrated with D and myself and on the verge of burnout, she can always talk me down from it - I really need that. If she didn’t approach it that way, I think I would probably shut down and not care. I’ve been with doctors and CDE’s in the past who really made me feel lousy over things that in the big picture, shouldn’t have been a big deal, so it’s nice to feel like I have a doctor now who has an outlook on D that really works for me.

63

Ha… I didn’t even read all the replies before I posted, but I could not agree more… see my reply below :slight_smile:

64

I heartily agree. There’s this saying that I absolutely adore: “I’d rather have three minutes of wonderful than a lifetime of nothing special.”

65

“and here is where people fail: if you don’t understand what the major factors are doing to your body then yes you increase proportionalty your attempts at failure at normalized blood sugars.” ----- “you don’t understand” may not be really personal, but if I am not achieving the 5.0, the statement seems to say I am lacking in knowledge or comprehension. The comment was in reference to achieving “correct” A1c numbers. I have not done that, so the comment puts me in the catagory of “fail” and “failure”.

“i.e. if your noticing high numbers after you eat and you eat the same thing you may correct the high number the next time you eat by maybe delaying your ijnection over a mulitiude of hours so as to never get above 150, take your shot earlier, or what have you.”----- How am I suppose to read this other than a person who is not in correct control is not paying enough attention and not doing enough? Seems pretty clear.

“yes it is a math problem, yes there are multiple variables at play during different times. i am sorry you have had more of a difficult time than someone else at what ever it is you are trying to achieve. but that is a part of life there is no set equation to solve every problem although there are guidelines that set us on our path but YOU as an individual need to find out how to be successful relying on your doctors for 39 years may not be the best advice if you keep coming up with the wrong answers, remembering that the drs aren’t with us and all of our wonderful decisions we make with the lives we lead”--------
I do not rely on my doctors and I keep incredible records, can do math very well and still cannot reach some magic number. The assumption is that correlation exists between insulin, food and exercise in ALL diabetics. That is not valid. You can say we just haven’t found it yet, but practically speaking, that helps nothing. Of course I watch for a pattern–if one ever emerges, I’ll jump on it. In the meantime, what do I do?

My objection here is the insistance that to be a “successful diabetic” the argument is clearly that I must attain specific numbers and test results. I appreciate your profile does not list an A1c, but your write up says you are an example of persons in the fives. Not an exact number, but still you put it in.

Somewhere along the line being alive and doing well was replaced by a number. Even some diabetics of 50 years plus post their “perfect” A1c numbers. Being alive and doing well is not enough. It’s not just this forum. I see diabetics identified on several forums by their name and their A1c numbers. Few post A1c’s of 10, so it seems that the use of the number is to show how “good” you are as a diabetic. What other purpose does it serve?

66

How about this theory. You mention that you had huge “swings” . I have always said that if you have a certain amount of “lows” before your A1c is drawn it can bring the average down…ALSO if you have a lot of “highs” before blood is drawn it will put the “average up”…??? Basic mathematics…??? I thought !!
? How is it calculated - I think is the key.
S

67

This discussion is fascinating, because I think it really sheds some light as to why only about 10% of the members of the community have chosen to enter their A1c data on TuAnalyze, and then most of the numbers entered are “good” ones.

A1c numbers, just like any other measure of progress in a disease (think cancer and how patients living with it monitor their numbers too) are a report card. While we all know a number (or a set of numbers) a whole story don’t tell (how they came about, why did we get them, etc.) they are still nevertheless the way in which our doctors can take a “peek” into our wellbeing.

As for us (the people that live with the numbers and the story that goes along with them), it’s important that we don’t take anyone’s sharing of their A1c (or any other number for that matter) as a sign of them rubbing it on our faces (if it’s a good one) or as a sign of them failing (if it’s not that good): A1c numbers are data, and health data is always good because of what we as patients can learn from it.

If we keep in mind that these are imperfect snapshots that fail to capture the complete story (for everyone as they do for us), we will not make assumptions based on people’s numbers and congratulate people who share a good number and offer our support to those that may be struggling with a number they are not happy with.

After all, diabetes continues to be a one-day-at-a-time disease (or in this case, a one-A1c-at-a-time thing).

68

i do not believe i put or insisted anywhere that what “succesful diabetic” does or doesn’t do life is perception and how we pervcieve our lives through our looking glass is invariably how our life is going to be in the realm of exisistence.

my bit of advice is maybe you try to hard maybe you do to much i don’t know you from a hole in the wall but you sound as if you may have tried to overachieve what other people percieve as pass or fail instead of just be.

now while i can understand why someone would want to brag about something they feel they have done well in wether there be sisniter rubbings in intended or not i do tend to agree that most details about our medical lives should bekept mostly private. people can choose to express themselves how they want…
but that being said how does that affect my overall view on life if someone is boasting about themselves??? it really doesn’t and the only way someone’s over eager boasting can affect my mood is if i allow it to happen.

now back to perception for me i view my life as if i was supposed to die until someone in the e.r. introduced me to insulin so anything else i get is bonnus time. so that being said i can choose to spend my bonus time how i wish with the life skills that i have acquired. now while i can choose to restrict my lifestyle choices and live a super long time for me life is about enjoyment and expierence so while using my knowledge of food i can more easily maintain near normal blood sugars or at least is the goal and while i have done great sometimes sometimes its not soo much but the entire time it IS MY CHOICES THAT DICTATE THE OUTCOMES OF MY SUCCESS… and how and at what level i choose to live with be comfortable or be at.

the one thing that it is not is a competition or testing of pass/fail because there really is no winner there is no check mark or power up you get by playing the game all you get is hopefully another enjoyable day, on what is a really cool place to be and we only get one shot at it. then nature recycles me.

69

I really agree with you Sarah. My BS was also bouncing from 30 to 300 every day. I have gastroparesis and found no help from doctors how to manage that. I was in the hospital for a week and the doctor managing my BS told me that my BS really baffled him – he did nothing to help but he was the first person to believe me I wasn’t causing it.

I started having problems with passing out. I was at the eye doctor and he asked me how my control was. I said not good and he held his breath & was all tense. I explained I was having problems passing out and then I added what my last A1c was – he heard that and eased up, laughed & said mine was probably better than his. All he heard was the magic number but did not hear the part about spending 3 hours a week unconscious.

70

If the numbers are nothing more than numbers, why post them at all? Why show the report card?

71

that is one’s choice, as in the same choice that you use not to put them up there.

why is it so wrong for someone to choose to do something that makes them happy.

i guess, why is it that you care soo much about what someone else is doing with how they choose to live their disease???
but then again that is your choice and you have every right to question what you are questioning but the answer i find is because they just plain and simple want to it is all about choice right isn’t that what we strive for??? the ability to choose how we want to live our lives within reason.

72

Whats worse is I dont actually believe A1C is the whole answer to complications. Futher more, Id happily give up my A1C if it meant my retinopathy would go away.

73

Had to mention that, when I went into a coma, I had an A1c of 10.7, and I put it up there for everyone to see. I don’t mind not being perfect, and I was really having some trouble at the time. Fortunately, I’m completely recovered, and my A1c is back down, but at least you should know that someone posted an A1c in the 10’s. Sorry, I won’t go above that – in that case, I’d be dead!

74

I can’t speak for why other people talk about it but I can tell you why I do it. I have gastroparesis and it was a huge struggle for me to start getting decent control again. It was the DOC that helped me do that I would like to give back some of what I have received. I know someone that went to the Mayo Clinic and was told that she would never see an A1c below 7 with gastroparesis. I know that is not true, because I have done it. I know other people have been told that same thing by their doctors. I would like other people to know that it is possible.

Sometimes too when people have their first good A1c, they are excited and have every right to be happy about it. There is no where else where people truly understand how that feels and people here understand when they share that.

I also think as a community, we need to be sensitive to how other people feel about it and be careful about how we share. I agree if people are bragging, that is wrong. There is nothing wrong if someone needs a pat on the back after working hard to get their A1c down. I also don’t think it is wrong to share changes you have made to get a better A1c. Sharing is how we learn from each other.

75

I wonder if people using CGMS are less stressed about it in general because they don’t miss any highs or lows. Fewer worries about having “hidden” highs that last for hours and also fewer worries of going unexpectedly low if you accidentally overshoot in an attempt to get readings down.



It also seems to me that 90% of the T1s here who have an A1c below 6.0% are using CGMS.

76

Since I seem to be the one who finds this whole thing problematic and the assumption is it’s because I am hypersensitive about my own A1c’s, I will note that I am like Danny. I have not had an A1c done in 10 years, probably. I refuse on the grounds that the test is not valuable to me and has always been a questionable measurement. If everyone wants to post their achievements, please do. I apologize if you are offended by my comments, but I do remain firm in my belief that persons should not be reduced to a number.

77

Sometimes people brag when what they’re really asking for is a little pat on the back. They are often people who are motivated by praise, and when it isn’t forthcoming, they feel the need to praise themselves.
So, a little “good job” or some such can go a long way toward making them feel better!

78

hey i agree whole heartly but if people choose to reduce themselves down that way(to numbers) than so be it, it is their choice on how they view their life…

as far as a1c and other test go i pay for what i can afford but i also view everything as information no matter how minute it may seem, now while you may not see any value in the test the ability to go back and pull information i think is quite beneficial even if your just comparing those numbers to three months worth of tests on your meter.

i don’t think it is nor should it be a be all end all measure of our survivabilty but it does make you smile when you tried to do something and it actually worked especially if it is new or different.

and all things should be taken into consideration in my opinion as to decide for myself how my health is other people can only offer an opinion…but i am the only one that actuallly knows how i feel or how i am doing…

but we use the data we can gather for our selves and compare them to a majority of the t1 population just to get some kind os sembilance as of where we may be with our health because it is all uncharted water until there is a cure…

79

I agree Natalie - that good job does make a person feel alot better!

80

Speaking for myself, when I say something like “it’s nothing more than a number” I’m not saying it is not meaningful. What I’m saying is it isn’t something we should base our emotional well-being on, nor even the whole of the story in terms of how we are doing with our diabetes. It is one factor and can be used to make decisions the same as we use any of the other data we get about our diabetes.

“Bragging” is a word that has come to have negative connotations. But I don’t think there is anything wrong with it if someone has worked hard, done well and wants to share it with the community. (and values the A1C as a universally understood symbol of that progress) It is not meant as a putdown of others who are not doing well, if anything the person who says “I was a 10.0 and now I’m a 6.5” is saying, I’ve been there, and I did A,B, and C and now am in a better place." I don’t consider myself someone who has an inordinate need for others’ approval. I did when I was much younger for various reasons, but now am pretty self sufficient. But when I am doing better (and considering the A1C is an easily explainable way of measuring that progress) this community is where I want to share it. My family and friends don’t know much about what an A1C means, and they certainly don’t know the work it can take for a type 1 to achieve a “good” one. If my post sinks to the 2nd and 3rd pages with little or no response I wouldn’t take it personally and certainly wouldn’t feel less proud of my accomplishment. Now if I posted that I’d gotten a 6.3 and someone responded “that sucks, you should always have an A1C in the 5’s”, that might be another story. But nobody on here would do that!