I battle with guilt and have over the course of 44 years of having diabetes. My a1c's generally range in the mid 7s. Any thoughts about what is personally "acceptable" to you and the reality, at least for me, that in diabetes t1 perfectionism is not an effective standard? Thanks in advance. Kim
I really like what the Behavioral Diabetes Institute says, "maintain the best blood sugar control possible, avoid severe lows, and live your life." Yes, some people "flatline" on their CGMs, but most of us (me included) don't. I just don't think we have the technology today to achieve perfect control, so doing the best we can is what is important. Perfectionism has its own stresses, which are bad for a person, IMO!
I am surprised that no one has replied yet. But, my 2 cents as a T1 since 1982. I have great difficulty with my BG levels. Contrary to many on db forums, I have never been able to follow a consistent life style (same foods every day; exercise; etc). My A1c ranges from 6.8 to 7.5 and most of the time it is around 7.2 or 7.3. I am OK if it stays below 7.4. I would love to have a 6.5 but realistically I know it is unlikely.
I think, but have no evidence, that some T1s have a less severe case than others. Mine is difficult and yes, if I devoted all my time to careful meal planning and exercise, I could do better. But, my goal is to stay as close to 7.0 as I can and my Endo is happy with that for me. I have the MM 715 and the Dex G4. I need to stay a bit eleveated overnight as I live alone and want to hear my Dex when I get low, which I do.
That is my story, or at least part of it! Best wishes to you.
I have been a type one for 24 years. My last two A1C's were 6.4 and 6.0. I still see crazy readings on my Dexcom. I have become a bit OCD about maintaining my target which is 100. I use the dexcom and the t-slim pump. I have had good luck with both, though there are times where I see my dexcom tell me i am an exorbitantly high number and when I test, it is usually not that high. Alternatively, I have also had relatively good readings on my dexcom only to test and it is really high. I think the best that anyone can do is to make it a point to test in conjunction with the dexcom, and keep a goal number in mind. Having a specific number to shoot for alleviated a lot of stress. Also, using a pump helped me a lot. Hope that helps.
I use the Dex G4 and follow my BGs closely. I've had T1D for 30 years. I regularly upload my G4 to the Dex Studio software. My goals and the acceptable performance are determined by the stats found in this software.
Following a diabetes complication diagnosis is 2012, I radically altered my diet and now restrict daily carbs to about 50 grams. This has had a tremendous effect on my BG control.
I am a numbers-driven guy, so please excuse my excursion "into the weeds!"
My goals for my BG control are "reach" goals that are tighter than my acceptable ones. I follow BG variability, BG average, percent of time within my 70-140 mg/dl target, and percent of time < 70 mg/dl.
BG variability: 14, 30, 90-day standard deviation <= 30
BG average: <= 110 mg/dl
% time in target range: 80%
% time <70 mg/dl: <= 5%
BG variability: 14, 30, 90-day standard deviation <=40
BG average: <= 120 mg/dl
% time in target range range: 70%
% time < 70 mg/dl: <= 7%
Please note that I do not consider any A1c number directly as a goal. The A1c does not roll in BG variability which I consider as the number one parameter for BG control. BG variability is even more important than BG average, in my estimation. I would much rather have a standard deviation (SD)of 30 and an average of 130 than an standard deviation of 50 and an average of 100. A relatively low SD enables one to safely lower the average without increasing the time spent below 70.
I also consider BG variability more important than % time spent below 70. The reason I say this, is that when variability goes down, time spent below 70 seems to follow. Low BG variability lowers BG average, lowers time spent < 70, and increases time sent in range.
If you want to translate all this into an intuitive grasp of your daily Dex curve, I would say this. You want to see at worst rolling hills, no rapid excursions either up or down. At worst you would see the 45 degree arrow in the Dex receiver, never the single or double up/down arrows. I would find acceptable occasional highs but < 180 mg/dl. More than 7-8% of time spent below 70 is unacceptable to me.
Reasonable BG control must balance good BG numbers with quality of life. Every PWD is going to strike that balance at different places along a spectrum. For me, that balance point moved markedly toward the good control end of the spectrum once I received a diabetes complication diagnosis. The fundamental equation changed for me. I spend much more time on managing my BGs but I am wholly satisfied with the outcome. I am safer, less stressed, have more energy, and feel healthier with this stance. Some might say I'm OCD, but I'm happy with the tradeoff I've made!
Thank you Anna. Good thought to have the target in mind. I'll aim at that approach, and lower the high alarm.....
Nell, thank you. Is your picture Mountain Ash? I love NC and felt connected to your response. Without getting into to much detail, I have come a long way, inching towards better control since age 11. It isn't just that we tested pee until I was in my early 20's; I had an ignore it mentality and a real problem w food until I started having complications in my early thirties. I'm now 55. I don't want to spend my life thinking only about diabetes and I liked what you said about aiming at 7. I know that my emotions affect bs - anger and anxiety (like rushing to get something done) are biggies. T1 would be a good disorder if we were robots :)........best to you too, Nell. Kim
Wow, Terry, thank you for your thorough and thoughtful response. I have to take this answer apart, bit by bit, by looking up standard deviation again and taking a somber, sober look at variability. You write well and got to the heart of my question when you talked about intuitive grasping, but you pushed me beyond....the way you think about arrows for instance. It would be great to follow you around for a day and just watch. You have successfully taken the emotions out of treating diabetes, and come at it w science and math. How wonderful that works for you. Many thanks. Kim
Melitta, thank you. I'm about to look about Behavioral Diabetes Institute.......
I'm pretty much in line with what Terry says, although now I've found 'my groove', and don't spend that much time on the numbers/downloads/SDs etc.
My goal is also to have minimal single/double arrows up or down, and usually see them less than once/week. Most of the time I have flat or 45% arrow.
When I first got my Dexcom, I intensely followed the numbers, SDs, etc by downloading the data. At the same time I was learning about reducing carbs, making different food choices, and experimenting with changes to how I bolus (now pre-bolus, dual wave, etc) for meals. I also use more temp basals.
Participating with the 'Flatliners' group was motivating, and provided valuable input of what others were doing, and feedback on my ups and downs. Through trial and error (lots of it), I found the combinations that worked best for me.
Although some may call it T1 perfectionism, or OCD, I call it doing my best to preserve my vision. But I also find I'm LESS stressed when my BGs stay 'in my range'.
Everyone needs to find their own balance.
Wow. Until today, I had ever heard od flatline approach to control and prebolus is a good word. I will look at the flat liners group and see what I can learn. Thank you very much. Kim
Tough question and many ways to look at it. There needs to be a balance. If I am testing 15 times a day and my CGM is beeping at me hourly, then I am stressed out and my quality of life has decreased. Not to mention I will burn out quickly. You can also fall off the spectrum the other way and not test or treat nearly enough...
I have goals similar to Terry... If I am really humming and things are going right I keep my CGM average at 105-115 and my BG average at 110-120 (14 day average). I strive to have my standard deviation under 35 and always find that a struggle. I also keep my CGM ranges at 80-135. I rarely am able to achieve this for a 24 hour period, but I feel I need to push myself in order to do better.
Another stressor of T1 is that we are always aiming at moving targets. I consider it an absolute success when I can use the data available to me and make changes to basals/boluses routines in a prompt maner to correct these changes. This is all relative, but if I can figure out that after lunch I have been going hyper and make the appropriate changes in 2-3 days to stay within range, then I give myself a figurative gold star.
Thanks Capin101 (weird, when I don't really know your name:)). I can see by the answers I got that I have some educating to do.........The first time I heard about flatlining was last night and haven't yet found the "flatliners" on site. But I see that I need to change a lot, like pre-bolusing, and changing my goals. I think my bs averages around 160. But I do go low and high on a daily basis....lots I need to change and thinking I need to figure out where to start.........I'm pretty sure my basels are good. Hmmmm. Do you have an idea, based on bs's, how long you wait to eat after bolusing?
I used to post a lot and got caught up with work and family. Today is a slow day at work so here I am...
If you read around TU there is tons of helpful information. Two great groups that I have learned a lot from are:
Total Available Glucose (TAG): http://www.tudiabetes.org/group/tagers. This group explains that in a clinical setting 100% of carbs; 59%ish protein and 10% fat is converted into glucose that impacts your BG. Of course carbs hit your BG the fastest, protein next (3-4 hours) and fat the slowest9 (6-8 hours?). Read som of the conversations about eating pizza or other high fat/protein food.
Flatliners: http://www.tudiabetes.org/group/flatlinersclub. This group is very inspirational. Individuals post pictures of their achievements and failure from their CGMs. Group is very helpful and encouraging.
Flatliners really encouraged me to lower my carbs eaten per day. The main idea being that if you eat less carbs, then you need less bolus insulin. This leads to smaller mistakes in carbs/insulin and more stable, predictable BGs. I cannot advocate eating only 40 carbs a day, but I have noticed better BG control by cutting my daily carbs by less than 15%. Further, if you eat only 20 carbs/meal compared to 50 carbs/meal your chances of BGs in your target range are much better, for example.
The one other item I use a lot is glycemic index. Higher glycemic index foods digest faster and hit your BG faster than lower glycemic foods. Shortly after I received my CGMs I could put a picture to what I "knew" from years of T1D. I ate a whole (approx 25 carb) banana and dosed appropriately. In 20 minutes my CGM was shooting up to the sky and my humalog peaks at 2 hours. There is no way for me to eat a whole banana and stay in my target range based on this. Therefore, I have decided that bananas are evil and will not eat more than a very small piece.
■■■■! I love bananas, but definitely get your point. I need to take our dog to the vet, but when I get back, I'll read more thoroughly what you wrote. My identical twin has celiac so I was advised to get off gluten...from there I realllly noticed the impact/and lack thereof of bread/noodle/cereal glycemic index.
Are you highish in the protein department? I have compromised kidney function, so don't eat a lot of meat and cheese protein.......wondering where your primary calories are, and how much fruit you do get to eat.......I think I could be happy with fruit in smaller amounts, but then I also eat a lot of yogurt....
Thank you so much for the info and groups you have provided......Really helpful.....Do you know Gary Scheiner's work? How did you climb into the carb/diet you are on now? Where would I look? And, would you tell me your name?! Again, my thanks. Kim
I'm glad my answer was helpful to you. I don't want you to think that my control is better than it is. I still have some ugly BG days. These days don't happen too often but I live every day with the possibility that things will degrade and then take two or three days to get back on track.
I'm currently working to get my BG variability number back down to 30 SD. My current BG average is above 120 but I've put together some good trends and that number is sinking. My best parameter is staying away from lows. I am easily under 5% for time spent <= 70.
I've just gone through a time where I've been adjusting basal rates. I've been doing that without the benefit of a full-blown basal rate fasting test. It's working out OK. I had a trend where I had to increase many of my basal rates in the evening/overnight/early morning and then had to return those rates back to the start when I starting going too low. This happened over a three week timeframe. It's as if my body has some long period basal rate change need. It reminds me of a stock market trading adage that says, "Don't fight the market trend. Go with it. The trend is your friend."
A person with a pump must not get emotionally attached to any of their pump settings. Once a need for change is demonstrated (any 3-day or 3-event pattern), it demands action. Just because you've had success with this pump setting for a long time does not guarantee it will continue to work.
The important thing is to never give up after a string or period of bad numbers. Always fight back. Every challenge offers the opportunity for success and as TuD member, AcidRock, would say, "Kick diabetes' ■■■!"
I think tides may be changing, but I remember some diabetes experts recomended over 50% of calories from carbs, there is no way I could achieve the glycemic control I want if I ate 300+ carbs/day. If you crunch these nubers too much you will feel like a lab rat, but I would guess my average day is about 120-130 carbs, or about 25% of my calories from carbs. I came to TU a few years ago and saw many people claiming that lowering their carbs/day and meal helped their BGs. I tried by lowering 10 carbs/day every few days or a week. I found that I achieve better BGs too. At around the 120-130 carbs/day I found that I have BGs that are often with range and I do not feel that I am missing out on some carbs I love, or its a good balance.
I do not eat much fruit, probably 1-1.5 servings a day. I try to suplement with vegetables (salad, green beans, peppers, etc). I also like consistency. Every workday I eat the same lunch of 40 carbs (often the biggest carb meal of the day). It is very boring and very predictable. I would also view some pages about glycemic index: http://www.journalmenu.com/nutrition-series-carbs/. High GI foods can send your BG into a rollercoaster if you are not careful. Check a few sites for GI values as you will find some change a lot, for instance I do not believe the bagel value on this site and the ripeness of fruit matters a lot.
I cannot say this is a diet you should try; and I certainly cannot cannot comment on any comorbidities you may have. I can say that lowering carbs/day has helped me and quite a few other diabetics on this site. If you want to look at the extreme, visit Dr. Bernstein's group: http://www.tudiabetes.org/group/drbernstein. These diabetics limit themselves to 30 cabs/day. I do not have this passion or control, but certainly respect the individuals who choose to live this way.
Kim ! Haven't seen you in ages, hope your dog is ok ? Now to the meat of the issue. I am in the same camp as most folks here about wanting to keep a "flatline" on my dexcom but knowing that the reality is given the tools we have to work with, the insulin available, getting and maintaining a flatline is neigh on impossible. What I can do is use the information, the trend lines, the event marker for exercise, the reports from the Studio software and work on getting better. I have been using the CGM since November 2012. There has only been 1 single day that I have been 100% within my target range of 75-150. But there have been plenty of days I have gotten close. I focus my energy on keeping a low SD but try not to get obsessive about it. I want to live my life and enjoy myself but avoid complications. As to the time for pre-bolusing as a general rule if my blood sugar is 80 before lunch I bolus and wait 8 minutes, 200 I bolus and wait 20 minutes.
I love bananas too but am very much like Capin, they wreak havoc on my blood sugar, instead I have found fresh blackberries, blueberries, and strawberries have more fiber, go really well in my Greek Yogurt and do not affect my blood sugar like bananas. I have not gone ultra low carb ala Bernstein, but I have cut out a bunch of crap like potato chips, French fries, and bread and have lost weight and improved my A1C. I average 100 grams of carbs a day with most of them coming at lunch. Hubby is gluten sensitive so we don't have much junk food in the house anyway.
Clare, it's great to hear from you. Thank you for taking time to throw in your valued sense, cents, $$$. I felt relieved when I read your response about 75-150 and 100 grams/day. I am afraid really low carb would not work for me, partly because of kidney issues (and minimizing protein), but also that I think I might feel deprived. I will use the part about your pre-boluses; and really appreciate your approach. My husband and I are gluten free too. Dick is much more sensitive than I am, but I really like what gluten free does for diabetes. Do you eat crackers? Is there one that you particularly like diabeteswise? Ill use your berry approach, and cut back on bananas. Trooper and Ginger (doggies) love them too, so we are not alone...Do you drink coffee? I shoot 1.7, squarewave or dual, for two cups in the am. Do you have your own formula for that? CHEERS for today, okay? I started off at 175, but lets see what we can do! Many thanks Clare!
Cheers, I started at 166 but that was because Dex kept screaming at me that I was low last night and I didn't check and just ate some wild berry glucolift tabs (I hate glucose tablets, but these are actually yummy - they cost a fortune but they're worth it and I got a $20 Amazon gift card for filling out some D survey so I used that.) Wow that was one very long sentence !
Answers: I don't generally eat crackers unless I have a super aged cheddar cheese to go on them and then it's Ritz. I just bolus for whatever I eat. If I'm going to the gym for racquetball or swimming then I don't bolus at all for it and it keeps me level while I exercise.
I add my coffee in to my breakfast bolus - but I drink coffee all day long. So a slice of toast and 3 cups of coffee is 15 grams of carbs. I don't find coffee does anything appreciable to my blood sugar but I may just be lucky there.
I love my gluten - but have found ways to be creative with spaghetti squash and cauliflower. Most of my recipes though rely on cheese to give them flavor or texture so they might not work for you.
Time for me to get some work done. Have a great day !