HbA1c Tests and T1D: The Good, The Bad and the Ugly

[argv]

I wish I could say that your situation is unusual–and by that, I am referring to a T1D that’s in supertight control and is all but overlooked (or looked upon skeptically) by their clinicians (who are not always endos, as you know).

The thing to keep in mind is that you’re the true exception to the rule. Exceedingly few T1Ds are in such tight control, and since clinicians see so many patients, most of whom are in horrible control, it’s quite reasonable for them to believe that there’s something amiss about this T1D whose numbers look suspiciously outside of the bell curve. It’s also particularly difficult for them (personally) when having to deal with patients who can be quite misinformed while still insisting on their self-delusion that they are right (about any number of subjects).

In my article about the three stages of T1D self-management, I cite stage two as being able to truly take care of yourself, likely because you have cut that umbilical cord from your clinician. And then I mention that stage three includes (among other things) that you no longer blame them for being the way they were all this time. In other words, when you go to the endo, let them be however they want to be and avoid getting yourself emotionally invested. You have nothing to prove to them, and after you leave, they’ll have forgotten all about it.

[artwoman]

Then Endo’s - celebrate us! Celebrate those of us who are doing well. I had an Endo who recognized that supporting us, not threatening to take our pumps away - that has happened. Fortunately, he couldn’t. I had paid out of pocket for my pump system. My warranty hadn’t expired, and I was very interested in the Tandem possibilities.)
I had a wonderful Endo that due to moving to another part of the country I coudln’t see any more. I used to scehdule my every 3 month appt for first thing in the day, and also schedule everything else from haircuts to home repairs for that same day. Ergo I only missed 4 days of work a year. Anyway, on occasion he would call to ask if I cold come at the end of the day. He said I was a joy as a patient he if I was the last patient, I undid all the “unpleasantness” of the troublesome one (usually it wasn’t the medical condition but the personality of the troublesome ones. His celebration of my successes only motivated me all the more to succeed.

I also wonder how often the lack of control or mgt is due to the lack of support by HCP’s.

[Steve_Henry]

Thanks Terry4, I couldn’t have said it better myself! No, seriously I actually “could not” have said it as well let alone better!

Do your best and always strive to do just a little bit better.

Thanks again Terry!

[William7]

I seldom share my A1C (about 5%), because it might cause others who, for whatever reason (including simple variability), have higher A1Cs.

Back in my fingerstick/T2 misdiagnosis days, my finger sticks ran high as diabetes progressed, so I requested additional medication to bring down BG. I was told I must be running lower other parts of the day because my A1C was “acceptable” (6.2% if memory is correct). Request was refused even though I had taken BG readings all times of day and night. I called the Nurse Educator and after some tests and an appointment with an Endo, another oral medication was added. The Endo thought I really didn’t need the added Rx, but prescribed anyway.

Endos in the VA medical system seem to think A1C is the be all, end all. One jackass even told me I should raise my BG so my A1C would be 6.2% and another threatened to take away my CGM. TIR for 2 weeks before appointment is noted with emphasis and obvious disapproval. Might be partly because my unwritten treatment plan is hypo below 65. I absolutely hate going to VA diabetes appointments. I’ve thought of maybe refusing the A1C blood tests, but haven’t figured out to do that while still getting other tests.

[kevino]

@argv thank you for bringing attention to this topic.

For what its worth, my A1c’s consistently have a large discrepancy with what my CGM would indicate. It shows up at 4.6% or 4.7%, while the CGM estimates it at 6.2%.

My endo has even had me do my lab work at other labs to compare the numbers, but they were the same. He has also had me do a fructosamine lab test and that came back as 275 which also correlates to an A1c ~6.2%.

Turns out this is definitely a thing. Here’s a good journal article that discusses the issue, The Fallacy of Average: How Using HbA1c Alone to Assess Glycemic Control Can Be Misleading.

[MM1]

@Timothy

My estimated a1c on my dexcom ap is usually very close to what I get from my a1c test.

I get similar estimated A1C from xDrip. xDrip also shows average so can monitor daily. Last endo visit with in office A1C, it matched xDrip est A1C exactly.

[BKN480]

I was diagnosed in July 2020. I was 33. I was extremely concerned about high blood sugar. Everyday since receiving insulin I’ve kept diligent records of my numbers, carbs, exercise, etc. I used a Dexcom for 6 months, which helped me understand trends, but ultimately didn’t work out b/c it was so erroneous too frequently. So I use a combo of lispro and glargine w/ glucometer. I am pretty studious and keep a close watch on things. B/c of my initial extreme concern with highs, I was for the first six months or so hypo a lot, my A1C was 4.7. I have over time gotten better at avoiding lows. My A1C has slowly crept up and my last one was 5.4. I expect my next one will be a bit higher.

I say all this b/c, having now 3+ years experience–not a lot relative to many, I know, but enough to understand my personal experience much better now–I cannot relate at all to people who are physically ok going much below 100, let alone 65. For so long I thought I needed to be between 80 and 100, and that this was healthy and would make me feel my best. I would go low frequently, but quickly correct, and thought this was good for my body. The reality is, after these years of experience, I now know that going much below 100, and especially staying anywhere at 80 or lower for extended periods of time (like, say, overnight) causes muscle pain, weakness, and mental fatigue, and general malaise and discomfort that can last for days, let alone the terrible symtpoms in the moment (that come especially at 70 or lower, for me). Not to mention the worst symptom, which is a debilitating flare-up of my Ehlers-Danlos, which causes really bad neck and head pain. The correlation isn’t loose or somewhat there–it’s 100%.

I’d love to “be like a nondiabetic,” and I’m willing and capable of putting in the work. The reality is, my body needs to be at 110-120 and stable to feel good, 120-150 feels pretty good too, especially if I have any insulin on board, and going lower makes me feel increasingly like total crap and puts me out of commission from life in general. Knowing this, I try to manage highs as best as I can. My strategy is: it’s not worth feeling like crap (and feeling like crap is itself a credible indicator I’m doing something wrong anyway) in order to meet what seems to be “normal” blood sugar for a “normal” non-diabetic.

Anyway, I say kudos to you, super kudos, and to everyone who is able to manage tight control and low A1C’s (and I know mine’s not high. But for me it is true that an A1C in the low 5’s or high 4’s means I’m going what for me is too low, too frequently). I just want to share my own experience. It may be that my other condition–Ehlers-Danlos–makes lower but “in range” blood sugar levels untenable for me. That is my guess, who knows what’s happening really. But I know what I feel, and I just want to feel my best day-to-day, and try to manage numbers with that as my main goal. (And I feel bad when high too, though not nearly as bad, and again, try to tame those as much as I can, without incurring inordinate amounts of stress, which is also bad for health! )

[Terry4]

@BKN480 – I congratulate you, first of all, for taking such a pro-active role in monitoring and treating your diabetes. I assume you are type 1.

I know nothing about Ehlers-Danlos and don’t know how that interacts with diabetes.

What meter do you use? Have you ever checked it against a lab?

I don’t doubt, at all, your report, that your body doesn’t feel good if you’re not stable and at 110-120 mg/dL. I do know if a person’s metabolism experiences higher blood sugar levels for an extended time, then lower “normal” blood glucose feels low. I don’t know that’s the case for you but is one possible explanation.

How stable is your blood sugar in a typical day? When you used the Dexcom, did you monitor your glucose variability? Standard deviation is one statistical measure which describes that when using the Dexcom. High glucose variability is stressful and could be part of the symptoms you describe.

Healthy human metabolism is comprised of lower glucose values than you report as your “feel-good” range. As with all aspects of human biology, we range across a spectrum of measures.

Kudos to you as well for continuing to monitor your metabolism. Good luck going forward, especially treating your Ehlors-Danlos.

[BKN480]

I don’t know either–not much info about the interaction between the two. Yes, type 1.

I’ve only used Verio One Touch. It seems to work for me. Whenever I’ve checked it and then had to have my glucose checked at the lab the numbers comport.

I have always felt crappy at those numbers, including when I was frequently going low and avoiding highs more than I am now. I do not think I feel hypoglycemic symptoms due to being used to being high. That just doesn’t fit with my numbers and experience.

I would add that when I first started managing the diabetes, I was just feeling so crappy, first from uncontrolled blood sugar previously, and from the Ehlers-Danlos, that I just thought what I was feeling was my own normal. It was only when I started being less aggressive in lowering my blood sugar that I realized just how much going low so frequently was impacting my health. I not only feel much better day-to-day, but I have finally been able to engage in a sustained exercise routine and build up muscle and stamina, which I had thought was a foregone conclusion for me. So, there have been many indicators for me as far as how “low” (for me) blood sugar always has adverse impacts, and staying “higher than normal” has been immensely better (I could not exercise whatsoever at lower blood sugar like I can now, and, of course, regular exercise is one major key to good long-term health, if one is so lucky as to be able to engage in it, as I fortunately now am).

As far as glucose variability, I admit this could be a factor in keeping me from managing things in an ideal fashion. But I eat a varied diet, I enjoy food immensely (I am at the low end of my weight range) and I eat tons of fresh fruits, veggies, legumes and nuts, but yeah, also breads, dark chocolate, and occasional sweets–but everything in moderation. I’m not willing to change my diet because it’s such an enjoyable and positive part of my life and some of the main things I look forward to everyday (even a giant plate of steamed veggies–but also, like tonight, a berry crisp instead of the usual 0.5 oz dark chocolate for dessert… yum). So I guess everything’s a tradeoff, and maybe I could stay less variable just eating tofu and broccoli (which I love), but my life would feel too vacant by doing so. So I have tacos too, and bake bread, and eat potatoes…

My time in range and variability on the Dexcom was pretty good. I can’t remember exact numbers. Again, like my A1C, they’re probably a bit “less than ideal” now that I’ve tried to back off giving myself too much insulin.

I know the healthy human range for glucose is 70-100, as far as we can tell. I accept that. At the same time, like another poster mentioned, I also give credence to the fact that there is not a significant difference in long-term health outcomes between A1C’s as long as they’re lower than 6%, and that, as more and more people are monitored more and more frequently, “normal” glucose levels are (from what I seem to have read/come across) more variable than people realized. And that feeling like crap and being unable to engage in normal physical tasks is not healthy at all.

Anyway, sorry for the long posts, and thanks so much for your feedback. I always appreciate your insights on the boards, and just wanted to add my two cents, especially if others have a similar experience…

Cheers, Becky

[CJ114]

You break a bone, the doctor sets it and forgets it pretty much in the same way for the past few hundred years.

Diabetes is more of a nuanced spectrum that morphs over time. Doctors, no matter how well trained, have historically, and indeed today, not had the time to get to know and closely monitor each patient’s case to give the proper up-to-the-minute best advice as the patient goes through life changes that affect their diabetes management. For many patients, especially those who do not want to put much effort into their own diabetes education and management, treatment is akin to playing whack-a-mole where the patient takes short-term action only to find out their lifestyle has morphed and the treatment does not work. It becomes a frustrating scenario for both the doctor and the patient.

Diabetes management is really a DIY process that most patients just don’t want to deal with making it a lose-lose proposition for both the doctor and the patient.

[BKN480]

I am glad you found your way to better treatment. I credit message boards like this one, and podcasts about T1D, for helping me understand more about the disease and how to manage it, than I would ever have from my endo, even though she is pretty decent.

And, like you and many others, my main lessons have come from my own experience.

Just one thought on your post: I think T1D care within the medical establishment has the standards it does because, unfortunately, T1D is not at all like some other diseases where the standard can be, “make the levels/stats/body normal.” T1D management is extremely complex, fluid, day-to-day hour-to-hour minute-to-minute, and vastly different than, say, lowering cholesterol or taking thyroid hormone, etc. Standards have to cover a broad swathe of the population, over a broad swathe of life circumstances, abilities, access to forms of treatment, etc. Standards are also not gun to your head rules that are legal requirements or some other kind of stringent necessity They are simply guidelines, ones that actually do have scientific backing and are composed and periodically reassessed by experienced physicians. The reality of creating such guidelines is the fact of needing to take into consideration the need to encompass all patients on average, and take seriously the dangers and harms of hypoglycemia, and how tricky it can be on a day-to-day, hour-to-hour basis to avoid highs without going too low. The actual practice of T1D care in specific cases should take these guidelines as what they are–starting points, guidance to keep in mind–then go from there by taking large account of the individual patient, since it is ultimately them and/or their caretakers that have to navigate T1D management in all of its minutiae (again, very much unlike managing other diseases).

Cheers,
Becky