Wild fluctuations between highs/lows, but a1c 6.5. what damage am i causing to my body?

Hi,
I'm going on my 2 year anniversary of being a t1 diagnosed at age 48. i wear a pump and test 8-10 times a day. i've never had an extreme hypo; my lowest ever was 46. but i also have highs on almost a daily basis of 280-350 if i eat more carbs than i bolus for. i'm constantly making corrections because i'm afraid of having a low, so i'd rather go a little high and correct later than take too much and go low.

my concern is what damage am i doing to my body? my endo says it's all about the a1c; that fluctuations don't matter so much. i've stayed pretty steady at an a1c of 6.3-6.5 for the past 2 years, but i'm worried about the long-term results? can anyone comment about this?

The A1C data seems to suggest you'd be ok however I think there have been other studies around that have shown that up and down can cause problems too. In my experience, when I was "rollercoastering", I felt kind of messed up pretty frequently. Which I treated by getting messed up pretty frequently, which probably was not the best solution? Things have turned out ok and I'm 44 now and seem to have escaped the worst complications for now but one never knows.

Read Blood Sugar 101 on complications. It's online. The question always is, how l-o-n-g a period is needed to cause the complications. Does 1 hour 3 x a day? Does 1 hour of spiking cause damage when it occurs daily in some people?
I have concluded I don't want to try to find out.

I guess my question back is, do you know how to curtail the upward swing?

sure, either by bolusing more or eating less carbs :). i'm a sugarholic; not a good thing to be when you're a diabetic!

Hi Im Juans Mom, I had the same problem with him. What I do when he eats more carbs I make sure its balanced,for example if you eat 2 slices of pizza , I make sure he has a salad with a low fat dressing,never anything thats says lite ( artifical sweetners)then lots of water no diet sodas or juices, you should be fine. If your on a pump you should be able to a combo bolus where the pump can evenly distribute the insulin instead of giving to all at once. There are carbs that take longer to absorb then some and that causes one to take more insulin. Have you ever bought the book called Calorie King or go online its gives every carb including restaurant foods, i use that alot when we go out and even at home and that has helped control his highs and lows and drink lots of water

yes, i have the book, thanks. i use the combo bolus a lot; especially when eating foods high in fat like all the sweets i eat. but i'm so worried about going to low that i don't always bolus the full amount i should take for the amount of carbs i'm consuming. it's a bad habit, but i hate the feeling when i go low. although i hate the feeling when i'm too high too-such a juggling act we have to do!

The relation between A1c and complications dates back to DCC study which now is pretty old.
It's true A1c is important, but in vitro (looking cells in a dish sort of) it was shown high bg has ossidative effects, so it's bad always.
There are still no clear studies on persons, but the guess is the steadier the better.

Someone writes it's better a slightly higher A1c but steady BGs than a lower one up and down.

For example, when BG is high retina vessels grow up, when you go low small vessels "die" causing small damages. Nobody knows I much time it takes at high or low for this to happen, but better to avoid it.

Isn't that your low BGs are due to insulin stacking ?
I find easier to control one single correction bolus than many small ones with overlapping actions which are difficult to calc.

my lows are usually due to:1) hormonal fluctuations (pre-menopausal), 2) delayed exercise hypo. i have a pump, so it tells me how much insulin i already have on board. i don't think it's due to insulin stacking. i know what i have to do; i need to reduce my carb intake, and especially, my sugars. it's just so difficult for me! if i took all the refined sugars out of my diet, i'm sure my swings would go away. i need an intervention for sugar addicts (especially sugar addicts with diabetes).

The problem is that you don’t know what these fluctuations are doing to your body. Some people have outrageous numbers and still stay complication-free. Others have pretty good numbers and have lots of problems.

I’ve been at this for over 35 years and especially in the early years have had outrageously high and low numbers. However, given today insulins, BG testing, and technology such as pumps and CGMS, my personal opinion is that you are taking unnecessary risks if you are seeing daily numbers in the high 200’s and 300’s. I also think that such highs result in crazy lows when you try to correct them.

I personally cannot eat lots of carbs and match my insulin to it. I have been eating about 120-150 carbs per day for years and still have lots of highs and lows, but not too many highs above 200. But lots of lows in the 40’s and 50’s. I have great a1c’s and no complications.

Right now I am eating much lower carb averaging about 50 carbs per day. I’m not seeing many highs above 150 and very few lows below 65. I feel good and find I am much less hungry and less tempted by crap food. But what’s interesting is that my average daily BG number is higher according to my meter and my Dex. So my next A1c is likely to be higher. So am I healthier? I think so, but I don’t know so.

Good luck as you figure out where to go from here. I definitely think you need to lower those peaks. But how low do they need to be? A lot of people say 140, but I can’t eat carbs and do that without going low later. But I think you can make some steps to at least get your peaks down to the 180 number that has been recommended for years. After that you can re-evaluate and decide what your next step should be.

I am like you diagnosed at age 46 and just turned 50. Unlike you I am MDI. For me, my relationship with food is totally different than it was before and at the beginning of this diabetic journey. At first I craved all the things I thought I could not have. Then I concluded that when I had them and roller-coastered, I found I hated how I felt more than my desire to have those foods. So gradually I gave up my consumption of most sugar and do the low carb thing. I will say at first it takes some getting used to. But after doing this for the past two years, I do find my blood sugars more stable most of the time. Not to say I don't get the occasional high, but when I do I don't freak out as much since they are less than they were before. As far as the lows, I still have some issues with that. It seems my exercise patterns really make me more and more insulin sensitive. But overall I feel pretty good about where I am at. I guess it seems like you have to figure out what is most important to you...eating the stuff you love and bolusing correctly for that or your concern about possible damage if you do go high. This disease is truly a balancing act!

Me too Gayle! I used to think that I brought this disease on myself because of my love for junk food and I've been always fairly skinny so I really did binge until I was diagnosed at 24 y-old.

If you are at 6.5% you must be "guestimating" way better than I do.

i'm so thankful to hear from all of you who have been on this journey and know what i'm going through! i know in diabetic years, i'm relatively new at this, and maybe i'm still in a little bit of denial that i need to change the way i eat in order to get to those magic numbers. i know i would feel so much better if i did!

Juan Carlos' mom suggestion to drink water is a good one too. I forgot but I always do that, to flush out my kidneys. I have no idea if it actually works but read it on a message board and it feels good.

Gayle, I'm glad you posted this because I think every one of us parents of a T1 has wondered the same thing. When these kids hit puberty, it's an absolute roller-coaster. One minute they're cruising at 90mg/dL and the next they're 300+. Mine is especially brittle and because of this we check him 3-4 times during the sleep period for *exactly* this reason. Even then, with a very compliant child, motivated parents, good support and communication... the Midnight Monsters will keep you awake as you think about retinas, kidneys, etc in 30 years.

I finally cornered our pediatric endo one day and asked him this question point-blank. The response was basically this: "A brittle teenage T1 will humble the most experienced endocrinologist. All you can do is keep doing what you're doing. If you need to sacrifice a little of your A1C to gain stability, do it. But as long as you're doing so well on the A1Cs and not having any other issues, don't change anything. There isn't any perfect number or solution, and you need to realize that you're in this for the long haul. So do whatever will give you more sleep".

I think these are sage words for T1's of any age. YMMV

I have been trying the same thing and am having the same results. My Endo and educator are warning me that the night time highs that I was having (from overeating wrong things) definitely need to stop or I will do damage. Yes it is hard giving them up but finally starting to feel some effects of abusing my system are giving me the much needed wake up call to do the right thing.

I’ve only been dealing with this for a few weeks, but this has also been one of my big concerns - especially when you read all the potential complications from spikes and all the different opinions as to their impact.

I got an email from a friend’s wife who is a T1 (since college) and an MD who said that spikes toward 200 after meals aren’t a huge concern for most. I’ve also read on these boards from several posters that they look at this as a quality of life issue: that is to say, if someone spends every second worrying and testing just to stay between the lines, is that really worth it if you can’t enjoy anything else? Moreover, does the stress that causes create separate issues that factor out any good you might be doing with ultra tight control?

Im certainly not at even remotely close to finding my sweet spot (in terms of numbers or personal balance in management) but (as cheesy as this sounds) I take comfort in knowing that I’m doing what my CDE asks, asking her if I have questions/concerns, and am not being reckless in my D management.

I asked my friend’s wife about a pump - which she loves - and her advice was to wait up to a couple of years until I “got to know my diabetes” - I actually take comfort in that approach because it reminds me this is something I can’t figure out right now and will constantly have to stay on top of since it will change.

Since I am traveling right now and in a place where foods are carb-heavy, I’m eating more carbs than at home: as such, I’m counting more carefully and starting to get more exercise. We’ll see how that goes.

I was diagnosed with Type 1 at age 3, on insulin right from the start. I'm 41 now and I've had periods where I didn't take the best care of myself. I always have highs and lows. But 38 years on insulin, I still have no complications whatsoever.

Gayle, You're already in an intervention! The evidence for damage to body has been presented.
In my opinion, however, it takes a long time to slowly remove certain foods from a diet that cause highs.
Eating more carbs than bolusing for? Test out small portions of each kind of starchy carbs. Figure out what 7.5 grams of each do to you: how far you went up due to that amount. Extrapolating to 15 grams isn't hard, but you may decide you don't want that much.
Record it all in a book.
Take the first week for cereals, cereal bars, dessert cookies that are cereals. Test One hour, two hours. Can you even eat 1/4 cup without going up into the higher reaches? Find out. Determine if it's worth it to not be able to stay below 140-150 when eating a certain kind of food. By eating only one kind of food for awhile and researching your body, you start looking at that food as perhaps not as important to you as it was. You get tired of it. It's easy to throw it out.
The second week for breads, pitas, etc. etc. One half a piece of bread is about all you can eat that's 7.5 grams. Then buy a loaf of low carb bread for yourself only and test out that.
Third week for veggies. Different veggies do different things. I have had to count out 4 carrot sticks and 2 pieces of celery, rather than put the container in front of me.
Increase protein so you are filled and not hungry. (Even eating a cold wiener before running evens out my blood glucose because it takes longer to turn into glucose and doesn't allow me to drop like carbs drop me.)
Eating becomes a different experience when you go thru researching your body's reaction to food in very small amounts in depth.
Some of these foods in 7.5 gram amounts will not require bolusing. Others will. As you figure out precisely where your body is going with these small amounts, you will slowly inch yourself down to a very normal, very stable blood glucose. You do not want to do it fast. You want your body to get used to 160-200 before it gets used to 120-140 and finally 100-110. Best wishes in researching. It provides a slow hiatus between where you are and where you're going.

??? I don't think that we've gotten the evidence just yet? I know I've seen it before but the graph thingy just says low A1C is better?

I know I've seen it before but am off to work and this is the best I can find quickly:

http://professional.diabetes.org/Content/Posters/2007/p0441-P.pdf

I think fluctuating that much is bad, but that is just my personal opinion. Once I cut back on my carbs last year (bringing my total carb intake down to somewhere around 90-130 g/day), I felt much better. My A1C only improved a bit, but the bigger difference was the drop in my standard deviation. And I felt SO much better. For me, hitting 300+ on a regular basis was really messing with my ability to think coherently at work. And of course the regular drops down to 40 and 50 weren't helping much either. I do still spend quite a bit of time outside of my idea range of 90-130, but it's usually just around 150 or 160, which for me is pretty good.