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.