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From Abby: My Stupid A1C That Makes Me Cry and is Stupidly Stupid.

(Note from Abby (actually, this whole post is from Abby, but this is her disclaimer part):  The following story comes from Abby the PWD and not Abby the RN. Abby the RN is totally non-existent when I walk through a patient room door as a patient, even if it is in the office where I work.)

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This is a clipboard.Today I had a really tough endo appointment. Really tough in a way that I never thought possible. I got my lowest A1c ever, and I was really bummed out about it. I thought the day I saw 6.5% I'd be planning a party and buying new shoes, but instead I got a sick feeling in my stomach and fought back tears.  I know that you're thinking, "What the hey, I'd KILL for a 6.5%," and so would I, if I earned that number through good, steady, in-range numbers. But the way I "achieved" this number is through being way too low, way too often. Something like 30% of my sugars were under 70 mg/dL. In the last month, I've seen 40 mg/dL more times than I can count. I knew my A1C would be lower, and I was not excited about it.

I downloaded my meter at work last week to get a feel for what was going on pre-appointment. It hit me like a ton of bricks when I saw the printout, and all those numbers in italics. I proceeded to use the dreaded red circle technique (except I used a highlighter, and I highlighted the low numbers instead of the highs). The amount of yellow spots on that paper left me speechless. It was only then I realized how much work I had ahead of me. I immediately found a few patterns, adjusted some basals, and put the numbers out of my mind.

Until today.

See, the issue is that I don't feel my lows until I'm in the 40s. And then I get hit with slight confusion and the inability to form coherent thoughts. My doctor explained to me this morning, that I've lost the ability for my parasympathetic nervous system to respond to low blood sugars - which is supposed to happen in the 50-60 mg/dL range. My body now skips straight to a neuroglycopenia response - or lack of glucose in the brain, which is very similar to having a stroke. Not saying it's the same as a stroke - the biology is way different - but your brain reacts the same way.

This is not good news. She assured me that if I let my sugars run higher for a few weeks, I should get the typical low feelings back, as my body adjusts to higher numbers. Unfortunately at this point in the appointment I wasn't able to come up with any good questions or plans. I kind of just sat there nodding and taking in what she was telling me. A quick physical and some refills later, I was back at my desk attempting to regain my "nurse brain."

A few hours (and lots of coffee later) I wandered down to the CDE office and they helped me adjust my pump to achieve some higher numbers without feeling like crap all the time, doing it gradually and safely. (CDEs are my best friend when dealing with my own diabetes, because I'm useless at fixing myself. Just can't do it.)

I think the hardest part of the day, aside from the whole "this is your brain on drugs" portion, was the reaction I got online from people when I announced my 6.5%. We work so hard every day for that dreaded quarterly report card, that we often forget to think about how that number came to be. I appreciate the love intended in the responses I got on Twitter and Facebook, but I just wanted to scream because this number shouldn't be so important to us! An A1C isn't meant to prove our worth as people with this stupid disease, it's a guideline to let us know how our long term control is. And that is not how we use it, at all. I'm the first one to admit that when I see an A1c under 7%, I think "Wow, great job!" even though I have no idea what influenced that number.

Anyway, I guess the moral of this wicked depressing story is that while we get a lot of criticism for A1cs over 7%, and an unfair judgement for over 8% - I think there is so much more to the story that we need to be asking of each other. A nurse in my office asked me, "And how do you feel about that?" after I told her about my 6.5%, and it made me feel so much better to be able to really talk about it.

So the next time you hear someone's A1C, whether it be 6.1% or 11.8% - ask them how they feel about it. Because there is more to diabetes than someone's A1C.

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Numbers, in diabetes management, need context. I hear you on this one, Abby. 

Comments

appreciated the perspective...I think your final sentence sums it up and is a good one.

Great post Abby! I couldn't agree more :) So often the person gets lost in the numbers and it just creates a vicious cycle. I also went through that experience of running lower for a long time and wouldn't wake up or react until it was in the upper 30's-40's and didn't even have a huge reaction. It took me a few months of more steady numbers but the reaction DID come back, not like when I was first diagnosed, but I now feel goofy in the 60's and know it's time to check so I know it can work for you too :) Hang in there!

This is a great perspective, Abby. When I look at those CGM graphs that look like a profile of the Swiss Alps, I sometimes realize how pointless the A1C really is. The sad thing is, there is a tool out there to help - called LGS - but you can't get it in this country. (sigh)

Oh Abby, that last line is so, so true. I agree with you 100% on this post and I'm sorry you had a rough appointment. I was interested to read your doc's description of what your body is going through re: not feeling the lows. Anyway, I hope that your next appointment leaves you feeling better about whatever A1c result you get!!!

i'm type 2 but those numbers still matter a lot to me. thanks for your perspective.

well said Abby! And the doctor is wrong, I have a hba1c of 8 and I have lows too of course, but I have never regained my ability to feel lows. I have similar things as you with the brain. Thats my only clue, and I dont have a dexecom so its scary!

What is LGS (Scott E. refers to it in a comment above)?
Thanks,
K.

I can totally relate to your very timely post. We just went through the exact same issue with my son. His A1c lat week at his appointment was like 5.8 or something. Endo not happy at all because that low A1c was a result of lots of lows. He too has developed hypo low unawareness and as a result we had to send the paramedics to help save him the other day when he was with friends and went out...

This stuff just sucks.

It's for this reason that when somebody shares an A1c on Twitter, I tend to ask the poster whether it's good news if that's not apparent. It's also partly for this reason that I don't share my A1c publicly anymore, just the movement and how I feel about the change.

Good luck in getting your adjustments made!

I went through a very similar situation when I first moved to Boston - it's really scary when lows no longer feel like lows, isn't it? I hope things look up (pun intended) soon!

I'm proud of my 7.2. I find it to be an accomplishment.

The first endo appt after being dx'd my son had an a1c of 5.7, for the same reasons. We had no idea he was dipping low, because he never felt it and he came back up on his own. Once we changed his dosages and he was in a more normal range, he started feeling lows in the 60's. But as Emily demonstrates, YDMY ;)

Also wondering what is LGS, by Scott E.

Thanks,

Kristin W

I love this post! It really gives a T2 perspective into how we look at the dreaded number. Lows aren't a problem for me so a good A1c is good news, but I still hate that that number has become so important! Many drs use a good A1c for a T2 as a sign that they don't need to test. I'll stop now before I go into a tirade. :) I'm glad you have some ammo to move forward.

Oh, just googled LGS: Low Glucose Suspend. The function on some pump/CGM combos that suspends insulin delivery at blood sugard readings below a certain level.

Excellent post! The other thing that frustrates me about the A1C is the fact that it's maybe not the best measure of control--standard deviation (variability) might play a large role too. You can get standard deviation from the Dexcom software, if you want to be able to put a number on it (and maybe check again in a few months to see if it's improved...the "quarterly reports" function or whatever it's called, is good for that).

Great post, Abby! I'm struck by the recurring theme I'm seeing in a lot of DOC posts lately: we are not our A1C's....but sometimes it's hard not to feel that way. You make a great point about "how do you feel about it," too. I'm going to remember that.

SO TRUE! Hang in there Abby!

I just had my first A1C under seven in the past few years (It was 6.7, I'm 15.).

However, unlike my doctors, parents, and friends, I wasn't super elated about it, because I knew it had come from lots of lows during marching band.

I understand what it's like to have a low A1C caused by bad control and have a high A1C when everything looks fine and you're trying your best, so this post really hit home.

I even had a summer camp counselor tell me I was a terrible diabetic because I had an 8.1 A1C, which they then implied meant that my parents and I didn't care or try.

Of course, the same counselor then gave me glucagon at three am for a 99, because she was afraid I might drop and didn't want to have to get up and check/snack me multiple times. Never mind the fact that she had to stay up the rest of the night once my bg shot up to four hundred...

I wish people would understand that we are not defined by our A1C.

I'm not diabetic, but unfortunately my daughter is.

She is Type 1, again after having lost her pancreas transplant (of over seven yrs).

I read your blog everyday for personal insights and explanations of & on diabetes.

Your entry today was very eye opening and informative.

Thank you!!!

Abby- I know this isn't the point of the post overall... but I have to say that I am so glad you shared that even though you're in the medical field, when it comes to your own diabetes, you still struggle. I'm in med school right now, planning to be a ped endo eventually, and sometimes it feels so hypocritical when my own numbers aren't always ideal. Thanks for the reminder that we're all human-- and that it's ok to be great at caring for others and still need help yourself.

This post really hits home for me right now. I have been diabetic for 12 years this week. I got started on a pump one year ago this week in hopes of fine tuning my control so I could be as healthy as possible for pregnancy. Even before the pump, my A1C was in the 6%s. However, since having the pump I've gotten a 5.7%, 5.4%, and 4.7%. The last time (about a month ago) was 4.3%, even though I expected it to be higher than before. My endo talked to me about raising my A1C a little when it was 4.7%, but the last time he just seemed elated about the number. He said he hadn't seen an A1C that "good" in years from a type 1. I am struggling with a lot of lows. My endo keeps saying, "If you want to have babies, now is the time." I've worked hard to get my A1C low, but now it's too low and I've found out my husband and I have male-factor infertility and will probably never conceive naturally. It's frustrating to have high A1Cs, but unexpectedly frustrating to have A1Cs that are too low, especially when your hard work was to fulfill the only dream I've ever had, and it will probably never happen now. I agree, we shouldn't be judged solely on that number. It's a helpful piece of information, but only a "piece." It's important to look at the whole picture to determine control and health.

I'm getting my first A1C check possibly tomorrow (or some time VERY soon). I have to admit, I'm very nervous... not for the number, but for having my blood drawn. The only other time I got that done was when I was first diagnosed and apparently the blood loss causes me to (almost) faint. I'm sure soon enough as I get more into the Diabetes world I'll end up more able to identify with the worry over the number than the worry over the actual test. But for now, it's quite... scary, I have to say.

Abby, you said it. Behind the scenes of a "perfect" A1C may be someone stressed out from treating hypos four nights a week. You're not your A1C. You're Abby, the one who introduced me to using Coach Wristlets for diabetes stuff. Thanks for that!

Don't you wish that the physicians who treat/instruct the type 1's , as part of their education/training , would have to inject enough insulin to bring on a really bad hypo at least once a week to help them to learn to be a bit more understanding?
Of course, I wouldn't wish diabetes on anyone, but, sometimes in life we have to experience stuff ourselves to be more kind to others

THANK YOU for sharing this Abby!! It couldn't have come at a better time! I have been using Novo Rapid for what seemed like forever, and I kept creeping higher & higher. My last A1c did come down a full point. Since then, I've switched to Apidra and now I think I'm cured!! LOL! I've been on it for the past 21 days, and I've had 26 lows since then!! whew! Mostly at 2am (and I love my sleep...) So, I know my next A1c will be lower... and because of all these lows, I feel like crap!! On the plus side, however, I've lowered my insulin by about 40%. WOOHOO!! :)

Awesome post Abby! Hang in there.

Thank you so much for reminding us that the number is not the whole story. The patient and their experiences are the most important. I want their thoughts first. Then I look at the meter and finally the number. Unfortunately the health care side is attached to that number interpreting it as the truth. It is not. We have conveyed this to our patients who now believe us. So thanks for reminding us that there is a valuable person in front of the number who comes first.

What a great post, Abby. That last line summed it up - that there's so much emotional and mental baggage that goes into any number. Thanks for sharing your perspective here, my friend.

Now is the PERFECT time to qualify for CGM insurance approval! My endo told me that insurance will only approve it for 3 reasons: BGs way too high, BGs way too low without feeling them (in the 40s at least 10 times in past few weeks), or pregnancy. I wasn't able to qualify for a cgm for several years--until I was preparing for pregnancy and accidentally attained reason #2. Quick, apply for approval now! A CGM helps SO much.

Yes, yes, yes Abby! You verbalized an experience I could never explain or even understand in my own head...and I have been a Type 1 for 35 years! Your words captured such a frustrating burden diabetics must balance with our A1c. Thank you for validating my experiences. Your words are so encouraging for a disease that can be so discouraging!
Thanks Abby :)

I have been through the same things you are describing ever since my third child was born. I actually ended up having a severe seizure about 2 months ago from a low I never felt which compressed 4 vertebra in my back. A1C's look great though...
We've been trying to let mine run higher which in turn has made me feel awful. In almost 17 years with T1 I don't think I've ever felt as bad as I have recently with my 6.3 A1C.
My endo is also a T1 and she has said many things like you mentioned about not being perfect or being able to tell others how to treat it but struggling herself as well. Your own experience will help so much with your patients and remember, it's okay that it's hard to "fix" yourself, even if you know exactly what you should do mostly because there is no magic number or answer for us.
Great post! I hope you get to feeling better!!!

I totally needed to hear this today after a friend of a friend who is an adult T1 commented that my daughter shouldn’t be having “extreme” highs and lows (extreme apparently being anything under 70 or above 250). She tried to tell me how I should completely change my daughter’s diet, making sure she eats only whole grain, low carb and protein. This only bothers me because my friend (my daughter’s voice teacher) uses this person as her benchmark and it makes me feel like she thinks I’m incompetent when Sarah has an A1c of 6.4, mostly in range blood sugars, a super active schedule, has never been hospitalized… Couldn’t someone once just agree that diabetes sucks, and it’s hard, and if we even keep them in range most of the time we should get a reward!

Michelle
it sounds like you are doing an excellent job helping your daughter deal with type 1.
It is always easy to give advice.
Humans like to do that.
Have as much fun with your daughter as you can, they grow up way too fast.....
that's my advice......=)

Thank you for the perspective. My daughter is a few weeks from her 1st diagnosis anniversary so we are still very new to Diabetes. Your post gives me a new (much better) way to consider her A1C's

I'm a low glycator (when I was first diagnosable in the olden days, my A1c was 4.8), and so when I got congratulated by my APN for my last A1c of 6.3, it was sort of meaningless, because I know I had plenty of highs to bring it that high. My ideal A1c, given that I DO have diabetes, is between 5.5 and 6.0. And I don't want to be congratulated for something that isn't spectacular!

Ever since my diagnosis, the A1c has always been seen as some "holy grail" or gold standard. Now, I know it's not. Type 1, it's 24/7 x Over Time. A "darn" rollercoaster ride. I hope you are feeling better. Thanks for the insights. Why can't our FDA get LGS technology here? We Need It Now.

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