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.
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.
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.
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.
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.
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.
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.
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.
It’s best explained using pictures. Take the following, for instance:
Beautiful, perfect Instagram
Cold, hard reality
The first image is basically the ideal Dexcom graph. It depicts steady, on-target blood sugars for hours.
It makes the image next to it look that much uglier. The second picture shows blood sugar that rose rapidly over a short amount of time and flattened out at a level so high that it exceeds the Dexcom maximum number.
Instagram: The social networking site that promotes flawlessness. You scroll through a feed and see images that convey society’s notions around perfection. And it’s annoying. The rational part of you knows that, surely, the stunning blonde swimsuit model on your feed probably has cellulite, only you never see it because it’s airbrushed and filtered away. That’s why it’s equally unrealistic to share nothing but the “perfect” blood sugars with the diabetes community. Diabetes is FAR from being sunshine-y and unicorn-y all the time.
The reality: Diabetes is up-and-down, mentally and physically. It’s not always going to behave the way you want it to, even if you’re doing all the right things and trying your best. That’s why I like sharing the good and the bad – it makes the victories that much sweeter, and the less-than-triumphant moments more educational.
People with diabetes understand the significance of a hemoglobin A1c test well. It provides information about an individual’s average levels of blood glucose over three months. While diabetes is about much more than numbers, an A1c reading is still important because it is one of the main points of discussion between an endocrinologist and a patient. It helps an endo determine how a patient is managing diabetes and can help direct course of treatment.
This test is a big deal, but the actual process of having it done is one of the simpler aspects of diabetes care and management. Historically, all I’ve had to do is show up to my endo’s lab the week of an appointment, write my name/date of birth/insurance provider/whether I’m fasting on a sheet of paper, and walk into the lab to have a small needle inserted into a vein located in my upper forearm. I have zero aversion to needles or blood, so it doesn’t hurt and takes less than five minutes. And it’s always mildly entertaining that every phlebotomist I’ve encountered feels the need to comment on how nice and visible my veins are – one even went so far as to call one of them beautiful! (My response: um, thanks?!)
Since my A1c blood work has been so quick, easy, and (relatively) painless in the past, I was anticipating it to go smoothly once again when I recently went into the lab one Sunday morning. But I didn’t have such luck. Moments after signing in, the receptionist informed me that they could not perform the blood draw. Nonplussed, I politely asked why not. She told me that the lab hadn’t received the orders from my endo. I explained that I would be seeing my doctor in just a few days and that this was a routine part of the process. She did her best to help me by making a couple phone calls to other suites in the medical facility, but it was to no avail. I was frustrated but walked out, accepting that I would need to call my endo’s office first thing the following Monday to figure out why my orders had not been sent to the lab.
Early that Monday morning, I received a message from a nurse who works in my endo’s office. She apologized for my inconvenience over the weekend, and let me know that she submitted orders for lab work for all future appointments for the rest of the year. That was great and all, but I still had to find time to get lab work completed for my upcoming appointment. I couldn’t go on Monday, but I carved out some time in my schedule at work to go back on Tuesday morning.
I was flustered when I walked into the lab for the second time in three days, because it had taken me twice as long to get there due to local road work. I told myself to relax, it would be done in a couple minutes and then I could head back to work with this task checked off from my to-do list. But…of course it wasn’t, because upon entering the lab, the receptionist told me that the power was down and they would be unable to complete my blood work.
For a couple seconds, I just stood there while I let that sink in. I explained how I was rejected on Sunday and practically begged her, please, isn’t there anything you can do? Despite having access to both my medical history AND the orders on her computer, she said no, but I could try one of the two other “near” lab locations. Completely exasperated, I told her no, that I guess I’d have to try again tomorrow, and walked away with tears stinging my eyes. I was mad that I wasted another trip, confused as to why this was so difficult, and defeated by the lack of understanding from the receptionists.
The bottom line is that I have a few questions after experiencing all this:
How come my lab orders weren’t submitted?
Why did I let this affect me emotionally?
Why does everything about diabetes management have to be so complicated?
While I don’t have an answer right now to the first question, I intend on finding out how the slip-up occurred. And my answer to the second question, I think, is tied to my response to the third one: Diabetes management is hard. I try my best every single day and deal with the curveballs that are thrown my way. But lately, diabetes is like a pesky gnat, flying around my head so it’s always in my line of sight and incessantly buzzing to keep my attention. It’s annoying as hell and gets in the way of living my life. So to have something that’s normally easy, something that barely even requires me to think about my diabetes, become so complicated is just ANNOYING.
The one positive result from this whole ordeal? My A1c was better than I expected. Thank goodness.