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.

My First Endo Appointment of 2020

My first endocrinologist appointment of the year is coming up next week and it’s got me feeling allllllll sorts of emotions…

Anxiety. This tops the list because, well, I haven’t been to a medical office since the coronavirus outbreak started. My doctors have either asked me to reschedule my appointments, or I’ve been able to see them virtually. I know that my endocrinologist’s practice has many protocols in place now to make the experience as sanitary and safe as possible, but it still does put me on edge.

Fear. I’m afraid of what my A1c will be. Yup, I’m actually scared to know this reading that should, in reality, help me manage my diabetes better. I know, I know – the A1c is just one way to measure how well I’m taking care of my diabetes, the one number isn’t a total reflection of my “success”. But I can’t help but be worried that I’ll be disappointed by my results, even though I know I’ve tried my best in the last few months to achieve one that makes me happy.

Beige and Gray Minimalist Quote Instagram Post
Who would’ve thought that a simple follow-up with my endocrinologist would evoke so many emotions?

Skepticism. The last time I saw my endocrinologist was just a couple days after Christmas…and it was my first meeting with her. It was her suggestion that I return in six months as opposed to the usual three, which I thought was a little weird, but I just went with it. However, I’m now wondering if this was the right call, because how on earth is she even going to remember more than six months later? I’m concerned that we’ll spend most of our time catching up on things that I didn’t want to discuss during this important follow-up, but I’m cautiously optimistic that it will go better than I’m currently expecting it to go.

Curiosity. I’m HELLA curious as to what my doctor will say about my diabetes management in the last six months. Will she tell me that I’m doing a good job? Will she scold me? Will she take the time to review my latest lab results? Will she help to address my needs so that the next time I see her, I’ll have less trepidation over our visit? I’m very eager to find out the answers to those questions.

Listlessness. Perhaps the most unusual feeling I’ve had about this appointment is…lack of interest in it. I’m nervous about physically getting out of the house to go to it, and I’m wondering about the outcome of it, but the mere thought of going right now just isn’t sparking much of anything within me. I haven’t really thought about the questions I might ask her during the appointment; instead, the only thing I’m truly focused on is the logistics of getting there and actually sitting in the appointment. Otherwise, I’m just feeling a little tired when I think about it, like I’ve already gone and it’s drained me of my energy. This could be due to some burnout that I suspect I’m contending with at the moment, but for now, all I know is that unless I leave the appointment feeling positive in some fashion, then this whole “six month follow-up” thing just might not cut it for me and my own diabetes care and management routine.

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.

First Impressions: How I Feel About my New Endocrinologist

Last week, I wrote about how I had an appointment with my first new endocrinologist in about 10 years. I compared my thoughts and feelings about the whole thing to a first date: Many of the same anxieties are felt in both situations.

By now, I’m sure you’re wondering…how did the date go?

Well…I don’t know that there will be another one.

Freedom is the atmosphere in which humanity thrives. Breathe it in.
This blog post serves as a bit of an endocrinologist evaluation.

Before I dive into my appointment postscript, let me just clarify that my thoughts and feelings are just that. They’re my opinions on how my experience was with this particular doctor. That doesn’t mean that she isn’t a great endocrinologist; in fact, I’m certain she is. But I just don’t think that we are doctor-patient soulmates.

For starters, the appointment got off to a weird start because none of my typical vital signs were measured upon arrival. I’m used to having my weight, blood pressure, blood sugar, temperature, and heart rate checked at the beginning of every appointment. But this time around, the only thing that was looked at was my…blood pressure? It was kind of random, and I never got an explanation as to why nothing else was looked at by the nurse, but whatever.

The actual appointment with the doctor herself mostly went as I expected it to. We spent about 20 minutes together (about 5 minutes longer than I usually get with the endo) and I told her a little bit about my diabetes history. She offered me some advice on what to do about the high blood sugars my new inhaler was causing (more on that in another post) and checked my feet as well as my thyroid, just like my previous endo did at every appointment. But she did not check my eyes, and she also…did not review my A1c with me.

This was pretty huge, though not totally unexpected. I knew this clinic didn’t have finger stick A1c machines like the previous clinic did, and that I would have to come to the lab at another point in time to get a current A1c reading. But it was surprising to me that she just glossed over it, like it wasn’t super important at that moment. She didn’t even review my Dexcom/OmniPod/Verio IQ meter graphs with me, despite having downloaded information from all three devices. However, these weren’t the most shocking parts of the appointment.

What caught me off-guard the most is when she said that I could come back in six months instead of my usual three.

In my 22 years with diabetes, I’ve gone to see my endocrinologist every three months, no matter what. Some of these appointments were more like maintenance checks to make sure I was on track with everything, but other appointments came at crucial times for me in terms of improving my diabetes management. I asked the new doc why six months instead of three, and she said something along the lines of…

“Well, it seems like you have everything under pretty good control. And you seem in-tune enough with your body to know to contact us with any questions.”

That latter statement is true, but the former…I don’t know about that. How could she have this impression after talking with me for a mere 20 minutes? It was mildly alarming. I probably could’ve pushed for another appointment in three months, but I got the distinct feeling that I would’ve been rejected had I done so. As a result, I walked out of the clinic that day with another appointment set for July and a feeling of unease settling in the pit of my stomach.

I don’t know that I can wait that long to see an endocrinologist, and I don’t even know if I’ll want to see the same person again. I have no idea how she’d be able to remember me, for goodness’ sake, especially given the brevity of our first and only meeting (so far).

Among all these unknowns, there’s one absolute truth: I miss my old endo.

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.

Is it Weird That I Love Looking at Lab Results?

Is it just me, or does anyone else anxiously await checking lab results after getting blood work done? And am I the only one who excitedly reads through results, looking for anything abnormal so I can see which area of my health I need to work on? It’s kind of like whenever I handed in a paper or took an exam in college – I always logged onto the student portal multiple times in the days after to check for posted grades. I do the exact same thing with my patient portal.

I know, I know, I’m weird. I prefer to call it quirky.

Lab reslts
An *utterly fascinating* screenshot of some of the allergens I’ve been tested for in the past.

I started thinking about this little idiosyncrasy a few days ago, after I got lab results back from my allergist. She had me go into a lab to get 10 vials of blood drawn so it could be tested to see what types of allergies I had. Fun!!! In the days following, I checked my patient portal dozens of times to see whether the results were up. And when they finally were, I was obsessed with poring through them and seeing how much sense I could make of them.

And I’ll admit, I love looking at lab results because I have a historical view of just about anything and everything I’ve been tested for in my life, and that includes my A1c levels. On more than one occasion, I’ve fallen down the black hole of comparing and contrasting my results over the years. It’s interesting to see how I can trace back certain A1c levels to different events going on in my life at the time it was checked, and more than anything, I enjoy seeing how much I’ve improved in the last decade.

So if this habit of mine sounds plain strange to you, then I don’t want to be normal…I want to be informed. I always want to be informed when it comes to my own health, because ultimately, I’m the one responsible for it, as well as the one who will do everything in her power to improve it.

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.

My T1D New Year’s Resolutions

New Year’s resolutions are kinda tacky and silly, especially ones that are broken three weeks into a new year. Even so, I like to put a little thought into how I can better myself when a new year begins, so I guess I’m the sort of person who (somewhat grudgingly) tries to make a commitment to some form of self-improvement around this time each year.

Happy New Year!
Are you making any New Year’s resolutions?

While some of my resolutions are going to remain private, I’d like to share others – specifically, my diabetes-related ones – here because I think it’ll be the first step in making them a reality in 2019. Here’s what I’ve come up with so far, along with some explanations why they’re my goals so far:

  1. Improve my A1c – This is kind of a cop-out resolution, because let’s face it, a better A1c will never not be a goal of mine. I’m in a better range now than I was a few years ago, which is a huge accomplishment in itself. But I know I can do more, and I have the drive and desire to get myself below 6.5 this year.
  2. Make time for more IRL T1D hangouts/meet more T1Ds – I can’t be the only one who scrolls through Instagram and feels pangs of jealousy when I come across photos of large groups of T1Ds hanging out, right?? A significant percentage of these hangouts are the result of T1D conferences, which I’m rarely able to attend. They either cost too much money or take place at an inconvenient time, so I’m forced to miss out on some valuable face-to-face time with people who understand me in a unique way. It’s definitely a bad case of FOMO. As a result, I want to be proactive and try to arrange more meetups in my area in the next year.
  3. Incorporate more self-care into my routine – 2018 was such an insanely busy year. I felt that, at times, I was getting pulled into too many directions and had obligations to so many people that I could barely keep up, let alone make any time for myself to catch my breath. I had days here and there where I could sneak away for an hour or two and treat myself to a massage or exercise at the gym, but I really didn’t have a single mental health day in which I unplugged from everything and kicked back. Though I know 2019 will be just as hectic, if not more than 2018, I still want to be sure to make more time for myself, even if it is just for five or ten minutes a day.

Now that I’ve shared my resolutions, I feel like that will hold me accountable for making a good-faith effort in accomplishing them. And I also feel that they will be good things for me to write about throughout the next year, so I can keep both my audience and myself informed of my progress.

And with that, it’s my final blog post of 2018. Here’s to 2019, a year that will be filled with plenty more content from Hugging the Cactus. To you, my readers, I wish you a healthy and happy new year!

Memory Monday: The First Time I Met an Endocrinologist that I Didn’t Like

One Monday per month, I’ll take a trip down memory lane and reflect on how much my diabetes thoughts, feelings, and experiences have unfolded over the years. Today, I remember…

…the first time I met a diabetes doctor (endocrinologist, or endo for short) who I didn’t like. At all.

I knew right off the bat that we would be a bad fit, because he started the appointment by sharing his own blood sugar with me (as he was also a T1D). “Oh, I’m 136 right now…that’s a bit high, so I’m going to take insulin for it.” He reached for his insulin pump and I stared at him, nonplussed. Since when was 136 a “high” blood sugar? Why was he sharing this with me? If his own target blood sugar range is so narrow, then what the hell is he going to think of me when he reviews my own data?

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The face I make when I think about that awful appointment and the negative thoughts it gave me about my A1c.

The appointment only went downhill from there. At this point in my life, I was a brand-new college freshman, and my diabetes was simply no concern of mine. So my blood sugars and A1c weren’t great.

And I got scolded for it.

Throughout the entire appointment, I felt judged. I held back tears at points because I felt that I had to explain myself to this guy, that I had to somehow get him to understand that the transition to college hadn’t been easy on me, and that’s why my A1c was high. But I couldn’t get the words out. Instead, I sat there, numb, as he lectured me on what I should and shouldn’t be doing to take care of my diabetes. He kept insisting that I go onto a pump, which at that time, was totally scary to me – a non-option. He was so adamant that I got frustrated and shut down towards the end of the appointment, nodding and smiling tightly at his words.

I’m certain that I cried on the way home from that appointment out of frustration over how it went. I didn’t feel motivated to take better care of myself; instead, I felt rotten. I realized that just because someone is a doctor, it doesn’t mean that they necessarily know how to convey messages about health to patients. In other words, not everyone has an appropriate bedside manner.

Fortunately, that was the first and last time I saw that doctor. He moved to a different practice weeks after I saw him. My next endo appointment was with my current doctor, and seven years later, it’s one of the healthiest doctor/patient relationships I’ve ever experienced. When I look at it that way, it was worth experiencing the worst in order to get the best.