Healthy Type 1 with high A1c...sound familiar to anyone here?

Hey there TU crew.

I'm Nick. US Marine, Crossfitter, Type 1. All three of those things I am proud of, but I could have done without the last one.

I was diagnosed in 2009 at the age of 30. Here we 5 years later. I haven't had an A1c lower than 7.1 that entire time. I eat healthy. I exercise constantly. I know I'm missing something, but I can't figure out what. unfortunately my providers are not necessarily a lot of help, as they are used to dealing with elderly Type 2s (not a bad thing, just a location thing).

Does anyone else have this problem, or had?

I'm sort of hyper about my A1C and when it spiked up into the 7s when I was working out a lot a few years ago, I decided to bite the bullet and get a pump and it was like night and day, things really fell into place for me with it. Part of it is the smaller increments for dosing and ability to cover variable insulin needs with different basal rates (particularly for exercise...) but also the fact that a pump will keep track of things so you can see "well, I'm a bit high after lunch today, if I cut my lunch carb/ insulin ratio a bit, let's see what happens...) and a lot of times, it works!

I should have mentioned I have been on a pump for 4 years. I thought that would help me like you are saying, but I still can't keep the roller coaster at bay.

In 2010, when I started running more than like 5 miles, I got a CGM and that helped a lot too. Generally, if my BG is higher than I want, I take more insulin and if it's crashing out, I take less but what are you doing with your pump and what do you want to improve with it? All of my pre-CGM A1Cs with the pump were 5.8 but, since the CGM they've been a bit lower. I still have excursions but they're usually more as a result of tactical errors "oops, too many carbs..." or "oops not enough insulin" and, once, I clean them up, they don't seem to stain my "strategic" picture too badly.

My main point of consistency is that I am never consistent. I will go to sleep with a 110, wake up with 250. The next night I will go to bed with a 120, wake up at 0200 with a low. Both of these with no real change in daily routine. I am usually good between post breakfast and dinner, but I don't live a life where routine is feasible, which is likely part of the problem.

It can be worth it to be consistent, even for short periods of time, as it can help you "benchmark" your settings and get things dialed in more precisely. I "winged it" for a long time, just using insulin like something I'd buy in the parking lot of a Grateful Dead concert, 10 units here, 5 units there, roll away the dew, etc. When I got the pump and started checking out the Medtronic "pie chart" reports, I could see "well, the roughest time of the day, is the morning, how can I fix that and I'd see that my metabolism seemed to slow down a lot in the evening. I'd be, like you say, 110 ish and seemingly cool at bedtime but run up so I'd see the 110 and stay up late, test again and see that it was going up, the late night snack lingering, the insulin slowing down or whatever.

Then the pump, it's like day 1 is super zippy, day 2 is ok but the results seem to lack some juice the days after. Maybe sort of eat the bigger foods on the first days can help smooth things out. Food stuff here at Tu can end up being pretty low carb. I might be bit lower but am not by any meants uber low. But, on day 5 of the pump like today, I'm cutting back for the most part.

Hi Nick!

I've got 24 years of T1 under my belt now (dx'd at age 9), and have had only ONE A1C under 7, ever. I'm still alive, complication free, and the rest of my life is going well- even the rest of my health- but I am certain there's something "messy" in the background that I can't figure out how to identify and therefore can't fix. My doctor is fabulous in that he doesn't discount my idea that there's something stupid going on, but doesn't have any ideas on what or how to fix it. I'm sure I could stand to get more exercise, and weigh all of my food, and eat the same thing and do the same thing everyday to mitigate any "sloppy user" errors, but I'm also sure that the degree of variability that I see from day to day isn't just sloppiness on my part so while super-micro-management would help, its not the underlying problem.

Poor sleep? Undiscovered allergies? Hormones? Would accupuncture or cod liver oil or daily meditation help? Should I eat only raw whole foods and avoid Teflon and rayon and highways? Is it the humidity, the barometric pressure, or my laundry detergent?

I don't have a suggestion (other than keep doing what you can) but I can sympathize with the mysterious 'something isn't right' idea that defies the common fixes and user-attentiveness issues! You're not alone at least?!

Do you CGM? Can make a huge difference to see all the numbers not just the snap shots that 8-12 FS a day gives you. I thought I was good based on FS readings but with my Dexcom found out that was not so. Have changed what carbs I eat, in what amounts, at what time of day and how and when I dose for meals. It let me get my basal dialed in much easier, as well as getting my I:C ratios and correction factors set up better for each time of day.

Also using THINK LIKE A PANCREAS by Gary Scheiner,has helped a lot as well as Diabetic Athlete Handbook by Sheri Colberg.
Using the dexcom data to see trends and connect the dots to activities/Times of day/increased resistance or sensitivity patterns has helped a lot in finding what works for me.
Adding in a pump after 6 months on the dexcom just made the fine tuning that much easier.

Hi Nick and welcome. When you say you "eat healthy" I was wondering what that entailed for you. When I was diagnosed I said the same; I am a vegetarian, I eat mostly fresh unprocessed foods, no sugar and no junk food. But as a vegetarian I ate a lot of rice, pasta, beans, cereal, potatoes, etc. I have found as many of us have that I can only have a chance at controlling my BG if I reduce carbs, eliminate some things entirely and limit others, even fruit which lord knows we think of as healthy! Just a thought that has worked for many of us.
Zoe

Have you tried basal testing - a good place to start. Pumping Insulin, by John Walsh has good instructions for running a basal test on your self, and a table in which to enter your data. Basically you go for an 8 - 10 hour period with no eating, no boluses and track your bg's. You might do an overnight, a morning to dinnertime, and a dinner to about bedtime or midnight. You do have to start with a good fasting bg. If you go low, or very high during the test, treat the situation and try again another day. I think you can find basic info on Walsh's website www.diabetesmall.com If you readings are to your liking, then it's time to test your carb-ratio and your insulin sensitivity ratio.

One of the most bothersome things about type 1 is that there isn't any consistency over time. The settings for your pump that you started with may not work for a long time. It is important the we know how to do these settings tests to make adjustments.

Hi Nick. I did have your problem, but only when I was pregnant. :) Don't think that will help you; however, there are few things I can think off that might.

I second the suggestion for Diabetic Athlete Handbook by Sheri Colberg, since you perform intensive physical exercise. That type of exercise will have hormones kicking in that will wreck your sugars.
Get CGM if you don't have it. You cannot react to sugar fluctuations and spot patterns with good old glucose meter. CGM checks sugar every 5 mins giving you the ability to look at trends.
You said you eat healthy, but in Type I world that may look different than for non-d person. I am referring to carbohydrates here. I would say decrease carbs to under 100gr a day if possible if not lower. This should give you smaller sugar spikes after meals, therefore smaller crashes after.
Then, you may need to take out some time to do basal testing, to really see what is going on. It is a lot of work to manage diabetes.
All the best!

Also saw that you say you go to bed with 120 and wake up with 220. CGM will help you figure out where the problem is. It could be that you only raise to 220 in the morning (dawn phenomenon), or if your sugar raises shortly after going to bed and stays that way - need to change basals.

I don't mean to offend you but I guess I am confused about the terms that you use. While it seems that you are very fit and strong, I don't know that you should be using the term "healthy." Even you admit that your A1c isn't what you would like it to be, so by that measure you aren't as healthy as you want to be. And while you say you eat healthy, we are bombarded with definitions of "healthy eating." Healthy eating for someone with diabetes may be very different than what is advised for the average american.

Instead I would actually suggest that you need to figure out what healthy means to you and then work towards that. And you may find that being optimally fit is in contradiction to meeting your "health goals." For instance many elite athletes find "mixing it up" to be a key element of achieving higher levels of fitness. But that doesn't bode well for us, we actually do better with consistent patterns of exercise. We can learn how to eat and bolus and what to expect from our bodies. Isn't Crossfit based on a workout of the day? That isn't very consistent.

I'm just saying that maybe you need to examine what "healthy" means and accept that elite level fitness may not necessarily be optimal health.