A1c and Time in Range: To Share or Not to Share?

“A1c: Also known as Hb1c or hemoglobin A1c, this is a test that is conducted every 3 months (or as requested) by an endocrinologist. A patient gets blood drawn to determine the average amount of glucose concentration in the blood during that 3 month period. The result of this test is a percentage amount, with 5% being an average result for a non-diabetic individual.”

This is the definition of A1c that I’ve shared in the diabetes dictionary section of Hugging the Cactus, and while of course the meaning and purpose of an A1c test will never change, one thing certainly has – and that’s the question of whether or not it’s the gold standard metric that indicates diabetes management.

That’s because A1c has a little competition called time in range. The concept is exactly what it sounds like: It’s an indicator of the amount of time a person with diabetes has their blood sugar within their preferred range, and it can best be captured by a percentage (e.g., I spent 70% of my day yesterday in range, with 30% of my readings either lower or higher than my ideal range).

While these two metrics vary from one another in how they are captured and analyzed, they do have one thing in common for a person with diabetes…is it a data point to share with others outside your healthcare team, or is it something to keep to yourself?

To share or not to share A1c and/or time in range…that is, indeed, the question.

Above is a screenshot from my Dexcom Clarity app. Note that you can see some of the information it captures, but you can’t see any of my personal percentages because I prefer not to share that with others.

The answer is personal and unique to every individual with diabetes, and for me, I keep it to myself in both cases. I’ve never felt comfortable opening up about my A1c or time in range online or in person. I think that’s mostly because I struggle with comparing myself to others. I do my best not to, but I can definitely turn diabetes into a competition that I internalize at all costs because I don’t want other people to know that sharing about these data points makes me deeply uncomfortable.

It’s how I am, how I’ve always been, and likely how I’ll be for quite some time. I’m curious to discover whether or not starting the Omnipod 5 will impact that at all, seeing as I have high hopes that the system will greatly increase my time spent in range as well as lower my A1c. But for now, I’m content with keeping these diabetes numbers to myself, and will aim to get better about telling people that I prefer not to discuss either.

“You Need to Have Better Control”

I read those six words, all strung together in a terse message from my doctor’s office.

Not exactly the response I was anticipating when I reached out to them to express concerns over a minor health issue I was experiencing…

Let me back up a bit. In early January, I decided to message one of my doctor’s to discuss said minor health issue. A week went by and I didn’t hear anything from them, so I sent them another message, reminding them gently that I was hoping for a reply sooner rather than later. Several more days pass by and I start to get annoyed, but I still keep everything in perspective: Maybe they’re understaffed at the moment. Perhaps a computer error prevented them from getting my messages. Or they might be just crazy busy with beginning-of-the-year appointments and responsibilities. Whatever the case may be, I decided to message one more time, drawing attention to the fact that my first message had been sent two weeks prior and that if I didn’t hear back by the end of the week, then I’d just call the office to hopefully connect with a nurse.

Luckily, it didn’t come down to that because within 48 hours of me sending that third message, I finally heard back from someone. And this someone said something that left me a bit gobsmacked:

“…with an A1c of 7 – you need to be better with your control.”

Life with diabetes often feels like this image – like you’re the only one in the control room of a command center that dictates whether or not you live. And yep, it’s exhausting.

I couldn’t believe what I’d just read, for multiple reasons. For starters, I’d mentioned in my first message that I *think* my A1c was right around 7, but I couldn’t be sure because it’s been a bit since I last had my A1c checked. So clearly, by reading the response from my doctor, nobody had gone in to check my records or look up my historical A1c – which may or may not have provided them with better context so they could answer my question better, but that’s besides the point. What had me most irate was the fact that I’ve been told – time and time again – that I’m doing a great job with an A1c around 7. I’ve had endos and nurse practitioners alike tell me that I don’t need to make any major changes and that I’m too hard on myself when I express a desire to get a lower A1c. So to have a completely different medical professional make a snap judgment right then and there that implies I do not have control over my A1c is obviously in direct conflict with what I’ve heard from others. How maddening is that?

Furthermore…I’m sorry, but A1c does not paint a complete picture of my “control”. I believe, along with many other people in the diabetes community (including medical professionals) that time in range is where it’s at. The amount of time I spend in range is leaps and bounds better than where I was in college – and honestly, so is my A1c.

This is why it’s incredibly frustrating to me that this person handled my health issue as though it was directly related to my diabetes and their perception of my lack of control. The three-sentence, curt reply to my initial message didn’t exactly help matters either, though I’m trying to not read too much into that…after all, you can’t gauge tone via written message.

I’ve decided the best way to handle this whole exchange is to bring my issue up again when I see this doctor later in the year. I’m not going to reply in the message thread, because I don’t see how that would cause any good, but I will bring this up when I go to see the nurse practitioner at my endocrinologist’s office at the end of this month. While she likely can’t fully help me address my health concern, she’s bound to provide me with some insight and some actual helpful advice that won’t involve her jumping to conclusions about my control. We’ll see how it goes.

For now, I will just have to try to keep my head held up high by taking control of the situation, if not my diabetes.

My A1c Results are in and…

Before I left for my vacation, I had my (long overdue) annual physical with my primary care doctor. Like he does every year, he ordered bloodwork for me which meant that I had a whole host of health data to review on my online patient portal, including my current A1c.

When I saw that value up more than half a point from my last reading, my heart sank.

Now, I’m not going to say specifically what the reading was, because I’m a strong believer in keeping that sort of information to myself (and if you’re the type of person who shares their A1c, that’s okay, too – it’s just not for me). But I will say that it definitely isn’t the worst A1c reading that I’ve ever had, though it upset me because I think it’s the highest I’ve been since my college years.

Once it fully sunk in that this was my current A1c reading, like it or not, I started thinking about the why. Why have I gone up? I could think of a few factors…

  • I haven’t been eating super healthy; rather, I probably eat too many sweets that cause my blood sugar to fluctuate more than it ideally should.
  • The pandemic has changed a few things about my daily lifestyle – I don’t get out of the house as much I used to because I work from home, which means I’m in very close proximity to my kitchen and that gives me too many opportunities throughout the day to snack.
  • I get lazy and don’t bolus for “small” snacks (i.e., snacks with 10 carbs or less).
  • On the subject of laziness, I’ve been really bad about “eyeballing” my plates and portions lately when it would obviously behoove me to measure out my food and study my nutrition labels.

So those are the things I could think of that are the likely culprits behind my dissatisfactory A1c. As I sat and stewed over them and chided myself for my carelessness, though, I also tried to gently remind myself that A1c is only one measure of blood sugar “control”: I told myself that I need to bear in mind that my overall time in range is something that I should study and try to learn from, rather than dwell on this narrow snapshot of my 90-day blood sugar averages.

This is as close as I’ll get to sharing my personal A1c/time in range metrics… 😉

Using my Dexcom Clarity app, I learned that my time in range was suffering. I prefer to spend 80% of my time in range, and lately, I’ve fallen short of that goal. So after studying the amount of time that I spend “high” or “very high” (high blood sugars are always more troublesome for me than lows), I started to get a clearer picture of what was going wrong for me and what I might need to do to fix it.

This whole exercise, as bummed as I was to have to go through it, is going to serve as a great reminder to me that whenever I get disappointing news about my diabetes management, the best way to cope with it is to study the facts that I quite literally have available to me at the tips of my fingers. I know why my A1c is where it is, and I also know now the areas in which I need to improve. And that’s something to be grateful about and use as a motivator so that I can improve both my A1c and my time in range.

I know I can do it – I’ve done it before and can’t wait to feel that triumph over my diabetes.

The Bad ‘Betes Habit I’ve Tried to Break for 23 Years (and It’s Still a Work in Progress)

Bad habits are notoriously difficult to break.

Nail-biting. Forgetting to floss. A social media addiction. Swearing. Luckily, I only struggle with two out of the four of those (I’ll let you figure out which ones are a big fuckin’ problem for me while I go check my Instagram account real quick).

When it comes to diabetes-specific bad habits, though, well let’s just say that in more than two decades of life with diabetes, there’s a biiiiiig bad (Buffy the Vampire Slayer fans, think Big Bad like Evil Willow or Glorificus) habit that feels impossible to break.

And for me, that’s snacking freely without bolusing.

When I’m snacking throughout the day, I am not nearly as adorable about it as this cartoon girl (and I am almost never snacking on something as healthy as the piece of fruit she’s cutting up).

When I say “snacking freely”, I think it’s more accurate to call it grazing…I’m not eating large quantities of food or anything particularly carb-heavy, but it is usually enough to impact my blood sugar, at least moderately.

I’ve acknowledged this as a bad habit in a previous blog post, but for the first time, I’m really taking a step back and thinking about how if I stop doing this, I might see a tangible change in not just my blood sugar levels, but my A1c.

Don’t get me wrong, my A1c reading isn’t the most important thing to me (I’d rather focus on time in range, or the amount of time I spend each day below my high limit and above my low limit). But it is something that does come up, and will always come up, during appointments with all of my healthcare professionals. It’s definitely not something that they will be ignoring any time soon, and this year, I’d like to have an A1c that I’m a little more proud to own.

So I’m going to actively try and break this bad habit.

Whenever the desire to snack/graze strikes, I’m going to do what the pros recommend: Have a glass of water. Walk outside for a few minutes. Play with my puppy. Find a task around the house to focus on instead. Actively seek something else that will consume my time instead of me consuming something that will ultimately have a negative impact on my blood sugar as well as my mood. Be more careful about portion control when treating low blood sugars, because I can really spiral and eat half the damn kitchen when correcting a low, and it ain’t cute. And when all else fails and I need a snack (no shame in that game) actually take a freaking bolus for it because it’s okay to eat something extra throughout the day, I just need to stop being lazy and measure out whatever it is so I know exactly how much insulin I need to cover for it. That part isn’t rocket science, so I should stop treating it as such.

All bad habits are difficult to break, and I know one that’s been around for most of my life will make it particularly challenging…but it’s a new year, a great excuse for making a positive change with my eating habits and blood sugar levels, so I say bring on the challenge.

T1D, A1c, and Time in Range

Time in range versus A1c…which measurement matters more when it comes to T1D care and management?

Well, I’m not exactly in a position to answer that, because I think the answer is unique to all people with diabetes. But I can explain what exactly both of these numbers are and how I view them.

A1c: Also known as Hb1c or hemoglobin A1c, this is a test that is conducted every 3 months (or as requested) by an endocrinologist. A patient gets blood drawn to determine the average amount of glucose concentration in the blood during that 3 month period. The result of this test is a percentage amount, with 5% being an average result for a non-diabetic individual. I consider the A1c result to be highly personal, so I don’t often share mine with others; however, I do refer to it when describing ways in which I want to improve my diabetes care and management.

Time in range: This value describes the literal amount of time that a person’s blood sugar is in “range” for a given period of time (e.g., one day, one week, one month, etc.). “Range” refers to above a person’s low threshold and below a person’s high threshold. One person’s defined range may vary greatly from another person’s, but for me, I have my low set at 80 and my high set at 180 on my Dexcom. In a perfect world, my range would be more like 80-120, but I have a higher threshold set to minimize the number of alarms that go off.

Add a heading
Diabetes…the chronic conditions with like, way too many acronyms.

So really, both are just two different ways of measuring blood sugar performance over the course of certain time frames. And while I try to bear in mind that these are both simply numbers that help me see part of the diabetes picture, and not sole indicators of how “well controlled” I am or am not, I do pay special attention to them and have certain goals for myself. (I strive for an A1c of under 7 and I like my time in range to be at least 75%: These are goals I came up with independently, without my endocrinologist’s feedback, because it’s what I feel comfortable with when it comes to my diabetes…other T1Ds feel differently, and that’s totally okay!)

It’s important to me that I remember that my “success” as a person with T1D is not defined by either of these numbers. In fact, I know many other T1D individuals feel the same way that they should be viewed as signposts along the road to achieving desired diabetes results. It can be hard to do, though, because of how much weight is placed on these numbers by medical professionals and from people across the Internet.

The bottom line? I try to tune out the background noise and focus on taking it one day at a time. By no means am I perfect, but nobody is, and I know better than to put pressure on myself to strive for perfection. Instead, I do the best that I can to maintain my A1c and time in range goals, while doing everything I can to keep the bigger picture in mind instead of individual numbers.

A Dis-Appointment: My Experience at the Endocrinologist

Welp, I had my appointment with my endocrinologist on Monday.

In sum, it was mostly an uneventful affair, considering the times.

Immediately upon arriving, I was asked to put on a clinic-provided mask and to sanitize my hands. I checked in with the receptionist and sat in a chair in the mostly-abandoned waiting area, taking in the fact that seating was reduced in order to maintain social distance.

A nurse came out to bring me into my exam room and she took my blood pressure (good) and my weight (let’s not talk about it) before leaving to get my doctor. I was slightly surprised that she didn’t check my temperature with a contact-less thermometer, but I decided not to second-guess it.

My endocrinologist entered soon after…and she spent all of 15 minutes with me. She said that she reviewed the information I sent her from my Dexcom, as well as data from my pump, and said she couldn’t really detect any patterns besides some lingering lows in the late mornings/early afternoons. Again, I found myself a bit bemused by this observation, because I hadn’t picked up on it. She decided to adjust my basal for the 11 A.M. to 1 P.M. window (I went from 0.9 to 0.8 units for those two hours) and then asked me if I had any questions.

She didn’t check my feet, listen to my heart, examine my thyroid, or review my labs with me…all things that I’ve come to expect from previous endocrinologists.

My mild shocks of surprise from earlier in the appointment turned into something else: As the kids say, I was SHOOK…meaning that it was absolutely wild to me that she was already done with me.

A Dis-Appointment_ My Experience at the Endocrinologist
Am I smiling or frowning underneath this mask? Given how my endocrinologist appointment went, I bet you can guess…

I expressed my dismay with my A1c – it had gone up a little bit – and she told me that I was “still under good control”.

I said that I was befuddled by my weight gain – I’ve been working out like a fiend the last couple of months – and she suggested that perhaps it’s muscle.

I asked if she could recommend any blood sugar meters to me – I’ve had the same one for practically a decade and I worry about its accuracy – and she said that I should try a new meter from the same manufacturer that’s supposed to hit the market “soon”.

For every question or concern I brought up in that short span of time, she had an immediate, unsatisfactory answer that made me feel like my concerns were being brushed away.

But the real kicker? I’m not seeing her again for another seven months.

SEVEN MONTHS?!

That’s right, folks. I went from having quarterly endocrinologist appointments for my first 22 years of life with diabetes to once every six months, and now in SEVEN months.

This means that I will have seen my endocrinologist once for the entire year of 2020.

That’s bananas to me, and a sign that my instincts from our first meeting were correct: This may not be the right doctor for me. I have no doubt of her intelligence or capability, but sometimes you just know when a given doctor-patient relationship isn’t the healthiest one for you.

The whole appointment – the brevity, the indifference, and the outcome – was almost enough to make me forget about my anxieties surrounding medical facilities during this pandemic…

…almost.

Luckily, that’s what face masks, Clorox wipes, several squirts of hand sanitizer, and a thorough hand-washing or five are for.

The Surprise A1c

I started out 2020 with an A1c that surprised me. It was a good surprise: Anything under 7 is a win in my book.

I won’t specifically say what the number was, because I don’t really believe in doing that and I fear that it will invite unwelcome judgment and/or comparisons. But I will celebrate that achieving this A1c was far from easy. It’s required a lot of work from me in the last few months, which have generally been a very turbulent period of time for me.

It seemed like the “diabetes gods” were really testing me in the latter half of 2019. From a month of unexplained highs to random incidents of technology failing me, I felt like I was being put through the wringer. I felt like a failure on just about all diabetes fronts, and it seemed like my efforts to maintain my desired blood sugar levels were fruitless.

Hey, Handsome
More than one surprise came with an unexpected A1c result.

So that’s why I could hardly believe my current A1c reading. Maybe it seems even more impossible to me because I didn’t even get to discuss it with an endocrinologist. In fact, I never got to talk to my new endo (the one I may or may not continue to see) about any of my A1c goals. Doesn’t that seem kind of effed up? Shouldn’t my doctor want to know what I hope to accomplish, in terms of my diabetes, in the next 3-6 months?

In that regard, this A1c has surprised me in more than one way…it’s not just that I’ve managed to get here (really, I’ve managed to stay here, my A1c in the last 2-3 years has been right around this number), it’s also about how it’s more than just a measurement of my average blood sugars in a 90-day period…it’s a marker of how I feel, emotions-wise, about my diabetes. I never thought about it much before, but as I’ve grown older, it’s really become a sign for me as to whether or not I have my shit together with my diabetes. It can signify how I’ve felt about my diabetes in a given period of time, from the lowest of the low burnouts to the highest of the high determined and motivated.

Kind of crazy and yes, surprising, how a single reading can mean this much.

A1c: Keep it a Secret or Share it with the World?

This post originally appeared on ASweetLife.org on May 12, 2015. I felt very strongly about keeping my A1c to myself four years ago. I’m still not too keen on sharing it with the world for the reasons I explain in this post, but I have been known to celebrate A1c victories on social media by posting particularly exciting results. Where do you stand on the spectrum? Keep it a secret, share it with others, or somewhere in between?

Over time, I’ve grown more comfortable with the concept of sharing as much of my diabetes story as possible. I’m open to the idea of answering questions that others may have for me, but there’s a key piece of information that I don’t think I will ever willingly share online: my hemoglobin A1c.

Some might make the assumption that this is because I feel ashamed or defeated by that number. I won’t lie, there are times in which I do get disheartened by my current A1c – particularly when I expected to hear a more favorable report from my endocrinologist.

Rather, I think the real embarrassment stems from the comparisons I make between my own A1c and the numbers reported by others. When I began blogging for ASweetLife just over two years ago, that marked the start of me exploring the world of T1D blogs. It was awesome to connect with others virtually by reading about their own personal experiences with diabetes. I admired the courage that many demonstrated by revealing some of their greatest challenges and obstacles they had overcome in their journeys. It seemed that improved A1c numbers were a common theme for nearly all of them.

HUGGING THE CACTUS - A T1D BLOG (1)
What do you do with your A1c information?

At that point, I started to compulsively compare my number to everyone else’s numbers. I seriously questioned myself and my ability to obtain a better A1c reading. I mentally berated myself for having a less-than-perfect number. The rational part of me knew that it was not wise to measure myself against others, but I just couldn’t seem to help it.

After a while, it dawned on me that the road to better A1cs had not been smooth for any of these individuals. It was marked by divots, twists, and turns along the way. As such, I wasn’t being fair to myself as I sought to see a better A1c. I know that it’s hard work and that I just need to focus on my own overall health and well-being (as opposed to that of other people) as I continue to strive for that 6.

Regardless, don’t expect to see me posting my A1c to my blog any time soon. I don’t really think I need a daily reminder out there for all to see of what my A1c was at a given moment in time. Instead, I think it’s important that I focus on what’s happening now and what I can do to help my current state of being. So for now, I’m content with keeping my A1c to myself.

Aim for an A1c of…What?!

All my life, I’ve been told that I should do what I can to keep my A1c levels between 6 and 6.5. This is the “ideal” range, the sort of long-term goal I should bear in mind on a daily basis.

So when my primary care doctor suggested that an A1c of 7 to 8 might be a more realistic, sustainable, and healthy zone, my jaw dropped to the floor.

He explained his reasoning for saying such a thing: Since people with diabetes obviously have different needs when compared to people without diabetes, it’s not entirely logical to expect a person with diabetes to maintain an A1c that they might have with a functioning pancreas. He said that as time goes on, it could affect cognitive abilities.

And then he said that this was the range that would be recommended to a person with type 2 diabetes – there’s no new research that indicates any difference in desirable A1c levels for a person with type 1 diabetes, so, as my doctor said, I should continue to aim for 6 to 6.5.

This was such a WTF moment for me, for a couple of reasons.

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Does anyone else feel super awkward taking selfies in exam rooms? Does anyone else even take selfies in exam rooms?!

One being that I had NO IDEA why he was saying this to me. He built up this whole explanation as to what the “new recommended A1c” is, only to inform me at the very end that it was only safely applicable to people with T2D at this time. Was he confused? Did he forget that I have type one for a minute there?

The other reason I was flabbergasted by this little discussion was that we hardly ever go into detail when it comes into my diabetes. In fact, he didn’t even ask me when my last A1c test was, or any questions regarding my insulin pump/CGM. He just asked the standard “how is your diabetes” question, to which I replied with a super-lengthy, not-at-all vague response: “good”. He did put orders in for the standard array of tests that I take for each annual physical, which would inform him of my blood sugar at that moment in time, as well as my current A1c. But it was nothing that I’d be talking to him about during that appointment because the results wouldn’t be available until late in the day. So yeah, I found the whole thing to be pretty bizarre and mildly misleading.

Coincidentally, I’ll be seeing my endocrinologist in a few weeks, and let’s be real here: She’s the one doctor who can best advise me when it comes to diabetes treatments and protocols. So I’ll be sticking with her recommended A1c range for me, which I have a feeling won’t be any different from what I’ve been told all these years with diabetes.

Reflections on my Recent Endo Appointment

Last week, I wrote about some anxiety that I was feeling the day before I was due to see my endocrinologist. Now that the appointment has come and gone, I feel like I understand the reasons why I was so nervous…

  • Reason #1: Some part of me must’ve known that my A1c has gone up over the course of the last three months – it rose half a point, much to my dismay. I confessed to my doctor that I’ve been a little careless, particularly in the last month or so, when it comes to carb counting and healthy eating. Luckily, she wasn’t critical of me, but I almost wish that she’d reprimanded me in some way. It would’ve been the talking-to that I felt I deserved.
  • Reason #2: My endo permanently switched locations: She’s now based at the medical center that I used to go to when I was seeing a pediatric endocrinologist. I hadn’t been back there in about eight years, and boy, it brought back some unexpected emotions. I must admit that I had to hold back tears as I walked into the building. I don’t know why all the feelings hit me so hard, but I suspect that it might have been because of the flood of memories that flowed through my mind. It also symbolized the journey I’ve been on in just the last eight years of life with diabetes, in which I:
    • Transitioned from injections to a pump.
    • Stopped using Lantus.
    • Started using a Dexcom.
    • Improved my A1c/overall health significantly.
    • Decided to become a more active member in the diabetes community.

Those are some major changes, and the magnitude of them practically knocks me               out as I think about the last 20 years I’ve had with diabetes.

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Just making some awkward faces while I wait for my doctor. Also, I love that the exam room has a full-length mirror in it: It’s perfect for taking pictures/killing time while I wait!

  • Reason #3: I was meeting all sorts of new people, which is very nerve-wracking to an introverted extrovert like myself. I was used to the receptionists and nurses at the old location. I got to know them and vice versa. It made going to appointments a little easier. At this new/old location, though, I don’t know a soul except for my doctor. A reassuring smile or light conversation would’ve placated me on this visit, but perhaps those things will come in time.

Anyways, now that I’ve had time to think about the emotional aspects of this appointment…I’m going to switch gears and start doing the things that I need to do and that I am capable of doing in order to get my A1c back to where I want it. I know that I’ll get there. As my appointment wrapped up, I looked my endocrinologist in the eyes and promised her that the next time she saw me, I’d be down more than half a point. And I intend to fulfill that promise.