High A1C and dreading the doctor visit


(Amanda) #1

Hi. I was diagnosed with T1 after 4 years of being misdiagnosed with T2. I was slowly making progress until last spring when my A1C went up a little. Just saw the results of my blood test for my end appointment next week and it’s gone even higher. Not the highest I’ve ever had, but higher than it’s been in almost a year.

I don’t want to go to my appointment. Almost sent the PA an email asking if I should even come, but I am sure she would say yes. Wish I didn’t feel like I was letting everyone down. I know people think I am not trying hard enough. I guess I am not. It seem so hard to get everything working together at the same time.

Anyway thank for letting me vent. Glad I found this site and can be reminded other are trying and struggling too.


(jdsnyc1421) #2

I’ve been there many times… I’ve often cancelled my appts, ashamed of my high numbers. Please don’t waste your time worrying about others’ reaction. When it comes down to it, it’s your body, your life. The consequences will be yours.
I’ve tried in my past to ‘cheat’ and mask the numbers by going into hypo numbers often just before my doctor’s visit, thinking that the hypo numbers would balance out the high numbers. They didn’t. I instead caused havoc on my body unnecessarily.
Remember, back in school, if someone was caught cheating on a test, the teacher would say ‘you’re only cheating yourself.’
I’ve truly come to understand and appreciate that logic.
Spend more time understanding why your numbers matter to you. Don’t waste time in worrying what the doctors will think - you’re one of many patients. . This is your disease, and at the end of the day it’s your life. Any improvement you make will be its own reward to your future,

good luck,
john


(Amanda) #3

Thank you so much, John. That is encouraging and very good advice. :slight_smile:


(Samantha) #4

Girl I feel you. My A1C hasn’t been below 7 in 2 years. My doctor thinks that I’m not trying enough. And I feel like I’m letting everyone down. I know where your coming from. Trust me


(Dennis J. Dacey, PwD) #5

Hi Amanda @Snicketfan, don’t go and cancel your endo appointment just because your HbA1c is a bit higher than what you have set as a target. Keep in mind, that the endocrinologist is working for you and that “numbers” such as A1c are not “pass / fail” grades but are really marker points. If they are “scoring” anyone, they are scoring the endo and the recommendations she/he gave you at your last appointment. John @jdsnyc1421 offered you some sage advice.

Amanda, I don’t know anything about you other than you just joined this site five hours ago - so A Warm Welcome to TypeOneNation! As I said, I know nothing about you but I will guess that your experience with diabetes hasn’t been for very long, so I’ll ask you to take a couple of hints from a guy who has lived with diabetes for 60+ years. TypeOne Diabetes is a tricky opponent that keeps on changing and insulin dosing needs to also change - insulin to carbohydrates are not set in stone and background or basal insulin will need hundreds, or thousands, of adjustments over the years so seeing your endo when your A1c is on the rise is advisable - your doctor and PA will help you make and understand changes and probably coach you in making your own decisions for changes between appointments. Make the most of your appointment - ask questions and demand “good” answers.

Did you know that there are dozens of causes for your glucose level to rise or fall?


(colleendawes) #6

Nah, don’t cancel. You can do it. I feel the same shame and guilt when I hear I have a high A1C (for the gazillionth time- UGH!) and hate to get lectured about it at the docs. Your appointments should be about your health and your A1C is a big part of keeping the baseline strategy right. BUT… you can be a bit sneaky… I’ll share my secret with you. What I’ve done is make a bargain with my doc to not have my A1C done or results interpreted until a week after the appointment. Again, A1Cs are critical to defining control strategies, but I’ve found that looking at the day-to-day numbers and trends from your CGM and your pump and going off of how you feel or what you observe as the T1Der can be the more valuable discussion topics with your doc. That way you can focus on your actual progress and strategy and make it more about small, definable goals: “HEY! My morning blood sugars are AWESOME!” or “Look at that - my nighttime lows went down after we changed that basal” or “Post-workout highs are hedging a bit when I’m bolusing at the end of my Jazzercise tape, that seems to be working!” We gotta take the tiny victories and keep the A1C number updated, but in the shadows. If it helps you (like it helps me) to think of how those darn A1C #s help the other people…Diabetes Doctors NEED you to get your A1Cs regularly checked so they can continue being supported by insurance companies. If you don’t have a recent A1C, your doc may not be allowed to prescribe you insulin - and you don’t want to put that pressure on your doc. So do it for them? And sneak up on those 7s, 8s, and 9s, but don’t make that your focus. Try to shift it to the micro and make your goals small, measurable, and easy to track. And then come back here and share all your successes with us! :smiley: Go get 'em, champion!


(Amanda) #7

Thank you. Those are some great tips.


(Amanda) #8

Thanks Dennis. I really appreciate the advice.
Thanks for sharing from your experience. I’m trying to remember that I haven’t had this for very long and need to think in the long term; not just this test or appointment.
I know a little bit about other causes of glucose levels; but from what I have been told I thought my diet was the biggest factor.


(Wendy Spencer) #9

Hi Amanda. It’s just a number, not a judgement. Everyone struggles with staying in the desired band at times. Life is complicated, and there are many factors influencing why the number is higher than you might like. I hope the endo is supportive and encouraging. You really are not letting anyone down! All the best


(Emily) #10

All of the replies have really great tips! I enjoyed this book: https://www.amazon.com/Bright-Spots-Landmines-Diabetes-Someone-ebook/dp/B072HR9ZCK/ref=sr_1_1_sspa?s=books&ie=UTF8&qid=1536334118&sr=1-1-spons&keywords=bright+spots+and+landmines&psc=1

It is a quick T1D read and offers a positive perspective and advice on how to cope with much of what you have described.


(Andy) #11

Is your MD T1D?

I know MD’s mean well and I have yet to find one that doesn’t have some sort of advice to give, whether it be about an A1c number or something totally unrelated. When I wasn’t a T1D, my yearly physical comsisted of a lecture about how I could stand to lose a few pounds. “Mr. Zimmerman, at your height, you should weigh about 170. You could stand to lose 10 pounds!”

“Uh huh! ok…”

My guess is they have to justify asking you to make their Tesla payment for the month. Not bagging on MD’s but its what they are paid to do. Hold your head high and if he/she says anything, just say you’re a work in progress.


(Dennis J. Dacey, PwD) #12

You are very welcome Amanda @Snicketfan and yes what we eat is a principal factor. but more specifically effective diabetes management is being able to balance activity, food and insulin; a not always easy task, especially as there are many other factors that contribute to either drive down our body glucose level or cause it to skyrocket. I’ll try to add a picture or link at the end of “Forty-two Factors that Affect BG” - an article posted in diatribe.org . Keep in mind that all 42 factors are NOT equal.

Also keep in mind that HbA1c is not the end of the road. Don’t get me wrong, I think the A1c is the best gauge we have to date but it can still be misleading - in the early 1970’s I was part of the development study for glycosylated hemoglobin, nod abbreviated to A1c. As an example, for years my A1c ranged between 5.9 and 6.1 but that didn’t mean I had “good management” because in effect I had way too many “highs” and too many “critical lows” - but my average did stay near 6%.

Yes, “watch” what you eat without being overly restrictive, eat what you find to be a balanced diet and healthy FOR YOU and learn how the foods you eat, and combinations of foods, affect your glucose level and how much insulin you need to counteract sugars and other carbohydrates, fats and proteins. This will take time, lots of time so good thing we are in this for the long run :slight_smile:.
https://diatribe.org/42factors


(Louis) #13

You can do this , I’ve had type 1 for almost 40 years , not one side effect, I had a amazing life traveled the world. Take control of your sugars !


(wadawabbit) #14

Hi Amanda. I understand your frustrations. Sometimes even though you’re doing everything you should be, it seems like your body has a mind of its own. But that’s why your doctor is there - to help you navigate things. I’ve been Type 1 since 1963 and have been on a pump for about 20 years now. I’ve discovered I have to change my basal rates (insulin delivery rates) a couple of times a year, and occasionally have to make some minor tweaks as well. A non-diabetic body does that on its own, but we have to learn to make the adjustments. So please, see your doctor or nurse educator, let them know if anything special has been going on (more stress, less exercise, new medications, etc.), and together hopefully you can figure it out. Diabetes has its ups and downs - no pun intended - so don’t feel like a failure when you get off track - work with your medical team to help you get back on.
Wishing you great health in the years to come.


(Jess) #15

The doctors are there to help you. Don’t skip your appointments. Your numbers are what they are. Doing better as you go forward is all that you can do. If your doctor makes you feel uncomfortable, FIRE THEM, and find someone else.


(Kim) #16

Many people feel this way about all different doctors for all different reasons…the dentist because they don’t floss, their primary when their weight is up etc. This lecture/guilt mentality keeps patients away and that’s not what should be happening with one of the most important people in your healthcare. If you don’t fell encouraged and safe when your appointments come up—especially when you’re feeling down about your numbers, then find a new endo. And work closer with your nutritionist if you’re not already. Sometimes all it takes is finding that one small change that makes the big difference. Chin up, you got this.