High A1c, I'm beyond scared for my future

Hey everyone

This is the first time I’m creating a topic, but this will be a very personal and honest one. I will first share some information of myself to then move on to the related issue. I have been diabetic since the age of 14, turning 26 in september. When I first got the diagnosis I was very scared.

I am someone who used to have 2 soccer practices per week and also matches. I stopped soccer due to complications regarding dehydration I believe (calf cramps).

If I may try to stay on the topic here, I still do sports, I play hockey once a week and also go on roller rides (I am french canadian so bare with me with the tougher words that I barely use, ever).

Ever since I was diabetic, I have been getting trouble controlling it at the perfect rate, if a perfect rate even is achievable as a T1 diabetic. During my teenager years, I mostly used pens in order to provide me with novorapid insulin and lentus, until I finally got accepted at the age of 17-18 for the Omnipod Insulin pump.

Since then, my A1c have been lower but not by much. I highly doubt (can’t remember for sure) my A1c ever was higher than 11 (maybe when I was diagnosed and during my first year or two).

I now use the Freestyle libre as well as my omnipod management system in order to provide me with my glucose levels. I find the Freestyle quite inaccurate at some times but that’s the only continuous glucose management system I can use until the Dexcom is available in my area.

However, on the Freestyle libre app, they give us a pre-result of our A1c and this is the first time I actually have took notice of it.

My question is; I am still of fairly young age, my diabetes haven’t been the bees knees in terms of results since I was diagnosed, but definitely got better since I use the Insulin Pump, should I be scared regarding complications and the results of A1c I have gotten from the age of 14 to 26?

I have an endocrinologist and he has not mentioned anything about dangerous glucose on my end so far. Let me make it clear; I do have high glucose sometimes because I tend to forget, but my average has been 10-12 (not mmo/ml) and on my app it says I am 50% of the time between 10 and 13.

/// Very important note \
I have suffered from Acidokinosis or DKA? Last year, due to a pump malfunction over night, I missed a whole 10-12 hour of insulin in my body which caused me to go to Intensive Care for 2 days.

My Freestyle app is telling me my A1c will be at 9.5, which I have read is very high. I am beyond scared in terms of complications. I practice sports alot, I want to live a beautiful life. I am someone who stresses alot, why did my endocrinologist not tell me anything about too high A1c?

Please enlighten me, I could write for years but I gotta stop now because my girlfriend and I are supposed to go grocery shopping and she’s putting her shoes on which usually is a sign she is becoming impatient :rofl:

Thank you all,
have a blessed day,
André

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Your not too old to change things.
Sometimes fear is very motivating to people.
9.5 is too high. We can get that down.
I start taking records and making adjustments for my Doc soon in order to prepare for an appointment.
If you want to do this together, we can do it right here on this forum post. Maybe we can learn some things about how to do better, with a little brainstorming from everybody else.
I also use Omnipod, but I am on a Dexcom, so I will get a more complete data record than you. But, Libre users can help advise.

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Thanks for the reply.

I am eager to use the Dexcom system, I have yet to talk about it with my endocrinologist, my appointment is soon so I will make sure to get info because from what I have learned the management is much better especially with the alerts you can get even on apple watches and whatnot.

I hope to get more answers from this forums, you guys have a very active community, I know because I have been stalking this forum has a guest for a couple years :sunglasses:.

My first questioning goes towards my bolus settings. My basal feels pretty good, since my hyperglycaemia only happens in spikes.

I will provide more info later since I am out shopping but I can tell you right now, HYPOglycaemia is something that scares me to death, I absolutely hate the feeling. My lowest was 1.7 and I do not ever want to go down below 2 again. I have never lost consciousness but that idea alone makes me prefer having a hyperglycaemia than a hypo.

I don’t know how to counter that fear and Freestyle libre isn’t helping me with that stuff when I see the curb going down straight.

Yea, I suspect my basals are pretty accurate too. But, my bolus is causing all sorts of trouble. I’m just gonna start by making an excel spreadsheet and looking at the numbers. I’ll do that for a week before changing anything.

I’ve been hanging out with a new friend a lot lately and he doesn’t know anything about diabetes, so I ought to be on my best behavior. He’s super hot and I don’t want to freak him out. He’s already scared too death of me, which is adorable because he’s much larger and more successful and a bit older than me. I am officially on my BEST behavior.

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Congratulations on realizing that you must improve your blood glucose management or risk complications later on in life. I am now age 70 but like you I got type 1 diabetes at about age 15. For the first 10 to 15 years my blood glucose management was very poor and my blood sugars were pretty much uncontrolled.

Everyone is different so I can only express my personal situation. At about age 40 I started to develop complications. Last year I finally had to have my leg amputated due to poor blood flow to my toes on my left foot. I also had a kidney transplant 3 years ago which luckily saved my life.

I think most of my complications are due to the fact that my blood sugar was extremely high and uncontrolled for the first 15 years of my life.

Today my average blood sugar is about 108 my standard deviation is less than 20 and my time in range is 98 to 99%. But I can’t undo the past and I believe my complications are result of my early years.

So as you are doing take advantage of the new technology which makes it so much easier to control diabetes and start working to improve your blood sugar control early in your life. It’s hard to know whether or not high blood sugar will result in complications but it’s not worth the risk of not trying to improve management now.

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Thank you for taking your time to reply to this thread, greatly appreciated. Also, glad to know you’re still here and kickin’ after what happened to you.

Technology is something I’ve always looked forward to since I was diagnosed. I cannot wait till the day diabetes will be easy to control to the point where I literally couldn’t bat an eye about it, but until then I do have a mission and that is to control it as good as I can.

Your reply will definitely serve me as motivation towards achieving my goals. Luckily there are plenty of people out there just like all of you who are willing to share their stories and their messages in order to motivate others.

Thank you

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One of the best things you can do to control your blood glucose management is to routinely read these posts. Members here have a wealth of diversity and advice. I have learned a lot about blood glucose management over the years but as most will tell you we keep learning everyday. Some advice that I would suggest is:

  • don’t be overly cautious, keep experimenting on yourself but do it safely.
  • keep reading and researching diabetes management and listen to those who have had it and offer advice but diabetes is personal and what works for them might not work for you,
  • don’t let diabetes control your life it doesn’t need to. I would switch to Dexcom as soon as possible. My personal experience with the Libre was that it didn’t work for me and the Dexcom does.
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Being scared won’t help except to motivate you to do better. Other than that, don’t dwell on past.

I had 20+ years T1D before BG meters were available. And until the DCCT study results (late 80s), they didn’t really understand that high bg caused complications. My first A1C was 14-15 range, and initial goal was too get down to 9 (using older insulins and syringe injections only. Today, many aim for and achieve lower A1C if it can be done safely, usually with help of pump plus cgm.

Using dexcom or libre is a game changer in your ability to lower your A1C, and newer pumps with cgm integration can do most of the work.

I did have many complications that today are often caught/prevented earlier with better treatment options. Yet I worked a full time job for 35+ years, and still active as a retiree.

One thing that was observed from older days, was that bringing down A1C too fast may have caused more damage short term. But if you are starting at 9 should not be a problem.

If you are able to get alerts on Libre, or dexcom, this will help eliminate this situation.

Good luck !!

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A lot of us had "poor"control at first and I think the teenage years are considered the worse years for controlling their blood sugars. You can’t change the past, but the great thing about diabetes control is you can start changing now.

What blood sugar levels are you aiming for on your Omnipod? I know originally they had me aim for pretty high numbers as they want to play it safe so you don’t get lows. But 9.5 is too high for sure.

You do need to try to have an accurate basal to work on the bolus level. While the spikes signify it’s a bolus issue, it might not be the amounts as much as timing of bolusing too. But it’s possible if your Bg number you are aiming for is too high then both your settings could need help.

So if your target BG is too high, you might need more basal throughout the day and your bolus is fine and it just be a matter of timing it better so you don’t spike? If you come down eventually to your target Bg level, then your bolus might actually be right? Just the timing wrong? But if you have to take a correction for that spike then that would show your bolus might be off?

And you have to decide what you want to aim for, a lot of us do have lower aims but we have worked at getting there usually by small steps. But the medical establishment generally will want you to target for under 6.5. Maybe sometimes under 7.5, but you will want to start out with small steps at first. And that will be in tightening up control.

And then of course certain adjustments sometimes have to be made for exercise.

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I think you are a good candidate for a pump that is looped.
Doesn’t sound like you want to do the” do it yourself “route because it requires a lot of attention.

The tandem / dexcom or the Medtronic system might help because it manages your glucose when you don’t.

Neither one is perfect and still needs some attention.

I had high sugars and A1c when I was your age too, but there was no cgm or insulin pumps at that time.

Still I don’t think I ever had an a1c over 8%.
My a1c usually sticks around 5.5 %now.

It’s real Important to get your glucose in range. At least target lower.
Maybe set a goal for 80 percent in range. Once you get into a good groove, it’s easier to stay there.

You really don’t want early heart disease or kidney dialysis or loss of your feet. The reality is, that this will be your future with a1c as high as yours.

It really sucks, but you have to count your food and take your insulin every time. I’ve been at this 34 years, I still hate it, but I want to live a long life and be able to enjoy it.

You can get a grip on this. ,!!
Forget the past because you can’t change it
The time is now

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Your A1C or average bg is not low. But it’s not incredibly high compared to the T1 population at large. The average A1C for a T1 is 8.4%. Reference: Few Type 1s Meet A1C Goals Despite Treatment Innovations | diaTribe

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Also note that average bg/A1C tends to run higher in young adults (for any number of reasons some of which I mention below). See graph showing a big peak in A1C for T1s in their teens and early 20’s.

I know that I struggled transitioning from pediatric endo team that was exceptionally good and focused on tight control, to a string of adult endos that were pretty bad (and certainly didn’t emphasize or work to help me reach good bg control).

It is hard to realize as a young adult but you can go in search of better care either yourself (by taking a more hands on approach to fine tuning) or by looking for a medical provider that’ll be more aggressive.

image

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It’s definitely do able. And you have time to make a change. I started with an A1C of 9 and now with the tslim and dexcom combo I am able to keep my A1C at 5.6. Are you carb counting correctly?

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There are ways to get lower. I set my sensitivity lower and I run in sleep mode. I also enter my weight to 10 lbs heavier than I am.
My average night time was 102 last night. But it varies a little.
Generally though I draw a flat line from 9pm until 8 am.

Even though I don’t like the targets on the tandem, my a1c runs about 5.5% and I’m good with that
I’m really hopeful they will allow us to target lower with the next update.

I almost never get alarms at night because the pump is constantly adjusting.

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I’ve had higher a1C for 51 yrs of diabetes but never been in a hospital, never needed help with anything, perfect kidney numbers, cholesterol etc. My one Endo told me many live around an 8. As Tim12 stated here. Never stop working to improve, but don’t live in fear.

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Freakin’ Dexcom, you would do this to me today, wouldn’t you? Remember that Dexcom isn’t perfect.

See picture above. I managed to be 75% in range in the past 2 days. I still cannot understand the sudden peak when I eat @ lunch. Keep in mind I rarely ever eat breakfast since I wake up at around 11AM.

All I ate for lunch was a grilled cheese. My glucose was at 8.1 before eating if I remember correctly and I calculated everything right in terms of carbs…

Hi Andre

Well you are correct, an A1c of 9.5 is not good. But stressing about it won’t get it down. It may go the other way in fact. I’m a T1d for 48 years and when I was diagnosed I felt the same. I was 28 at the time and all we had was a little test strip to pee on which told you where you were 4 hours ago. Not much help. No A1c in those days so I hate to think what mine was.

Over the years I have kept up to date in technology but the best advice I have gotten came about 2 years ago. Limit your meals to 35 carbs per meal, and no exceptions. Eat foods with low speed sugars, like green veggies, and stay away from foods that are white, like white bread and potatoes. These are known as high glycemic (produce sugar quickly). Also prebolus at least a half hour before your meals without exception. If you forget, take your insulin and wait to eat the half hour. Kind of a penalty for forgetting to prebolus. Memorize the carbs in your favourite foods. Drink coffee or tea black. Cut out all the things that will give you high levels.

The freestyle app is good but the readings are typically lower than the finger stick you would do to test. About 2 mmol/l. I usually compensate for that when doing my pump injections.

Good luck with everything. Do the best you can and don’t let diabetes control you, you control your diabetes. It has certain rules that can’t be broken so no point in trying to break them. Just so it.

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A few things might account for your after lunch spike. I would examine your pre-bolus time first. An 8.1 mmol/L reading is already borderline high and an insufficient pre-bolus time could explain the spike. Since you monitor a CGM trace, an optimal pre-bolus time would be indicated by a significant downward bend in the CGM trace.

If I were at 8.1, I would likely take an insulin correction for that level and add it to the dose needed for the launch carbs. But I would wait for the bend before I ate.

Another possibility is that your basal insulin during that period was weak.

Your overnight glucose levels were more variable and that could have played a role in the after lunch spike. In fact, if I were you, I would make my number goal the reduction of glucose variability. That’s indicated by standard deviation (SD) and coeffcient of variability (CV) statistics.

Your trace, in the entire 24-hour period never flattens out. This is not good for metabolic control. In fact the spike you’re concerned about looks like a repeat of 24 hours prior. I’ve noticed this circadian pattern in me, too. If I go too high or too low, my body tends to want to repeat that pattern 24 hours later.

You might try to use some strategic fasting or only eating low carbohydrate meals for a day and see what happens. That could help you tweak your basal rates and dial in optimal basal rates.

Again, there are many issues you need to examine but I would recommend starting out working on managing your glucose volatility. That could start with finding optimal basal rates and fine tuning the pre-bolus time. Your pre-bolus time could be as long as 30-60 minutes. You’d have to do the experiment and carefully monitor your glucose levels following a meal dose. Always keep fast-acting glucose handy.

Inattention to pre-bolus times is a major factor in poor post-meal blood sugars.

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Diabetes and its long-term complications have a way of periodically frightening us. You can use that fear to motivate yourself to make efforts that you’ve resisted to date, or you can silently suffer from this nagging fear and let it undermine all your health efforts.

I much prefer to fight back. Diabetes and glucose levels are hard to control but they will fall in line with a little bit of luck and honest hard work. But you need to reconsider everything in your daily habit.

Nothing should be considered “sacred” and beyond changing. If, for example, you conclude that life is just not worth living if you must give up something like breakfast cereals, then your health will continue to degrade and diabetes will remain an unsolvable puzzle to you.

Right now, we have all the tools we need to affect reasonable management of glucose levels. With modern insulins, a CGM, and willingness to pay attention, most people can regain control of their diabetes. You can do this! But you must consider all your habits and be willing to change the ones that torpedo your control.

Food, exercise, sleep, and mindfulness practices all play a role in glucose management. You can change your life and health for the better but you need to be willing to do what it takes. There’s no way around the hard work it takes to do this.

Yet, I think the rewards are great and the satisfaction it produces make it all worthwhile. Don’t sell yourself short!

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