Hi Gang,
Im reading a lot of threads on the forums here and see a lot of folks who have T1 diabetic for years without major complication. This is both encouraging and saddening for me. Encouraging as I see diabetics actually can overcome the tremendous difficulties that come with this disease. On the other hand though, I get discouraged as I know my control isnt the best. T1 for 25 yr. last H1c was 7.6.
So, no need for cheery banter (although its appreciated), but what I really want to know is how you do it. You who are in tight control and >6 A1c… What do you eat? How often? Splurges? Constants? What is it that you think you do that helps you to be on top of this monster we carry? Hopefully I (and maybe some others) can incorporate more of this into my lifestyle and diabetes management.
Some up front info, I tests 4-8 times a day, attempt to stick to the same foods, but love to experiment. 10 hour work days are normal. married with a couple of kids. Oh, and Ive been on the MM pumps for 7-8 years, and have used a CGM for 1 year, but am off now. Busy life to say tge least.
Thanks for any input.
Hi Kim,
I’m not a veteran T1 & it’s been a bit over two years since diagnosis. What has helped me is low carb (30-35 carbs). Low carb, low insulin doses. I feel fortunate that I somehow came across Dr. Bernstein’s book Diabetes Solution only a couple months after being diagnosed. I felt horrible following the ADA plan & would never go back to eating like that again.
Seems that most people instantly react that they can’t eat low carb & mistakenly assume it’s a life of deprivation. I was a former carb junkie & I don’t miss those carbs. They hold no temptation any longer & I certainly don’t feel in the least deprived. With sufficient protein & fat, I never feel hungry. On the ADA diet, I was hungry constantly. Maybe that’s why all those snacks are included:)
Without being a slave to it, I try to keep protein pretty consistent from day to day.
Kim, I have been T1 for 10 years. I know what has helped me is eating low carb. Then coming to read Dr. Bernstein’s book Diabetes Solution really helped I was able to go from a A1C of 6.1 to 5.8 in three months.
Like Gerri I never feel hungry with the low carb, but was always hungry with the ADA diet. With the low carb I have been able to lower my insulin doses also.
I test between 8-12 times a day sometimes more depending on what I am doing at work. I have been on my MM pump for most of those 10 years and my CGM.
Wow Missy, that’s great!
Kim,
I’m at 5.4-5.9 A1c. Maybe that’s too low for you, but I can plop that A1c wherever i want it, I’m finding out.
To be specific, the CGM showed me what the top number of grams of carbs are that I can eat at a time and still have insulin keep my BG 100-120. It raises to 140 after a meal, but no further.
The top number of grams I can eat at a sitting is 26-27gm, and to keep up my weight, I eat 4 meals a day. I don’t eat fruit or oatmeal, unless one calls one bite - eating!
I always have a protein with a meal: Morningstar sausages at breakfast, ham slices in a low carb bread sandwich, protein bar, or evening fish or substitute meat. Low low on potato and starch. So it is by constant testing things out that I have come to this.
I do not eat the same thing day after day, since I believe appetite is associated with newness/novelty/trying out things. I test about 7 times a day and since I’m not on pump, I take about 7 shots a day, 2 of which are basal. Since the grams are low, the shots are tiny. Best wishes! Try it out. Don’t even think of trying it out if you eat out every day. Restaurant food has processed goodies that I can’t figure well.
The smaller the grams of carb, the less insulin… Be sure to reduce your pump intake when you try it. And don’t try it without protein.
Ya know, it has its ups and downs. Ive been T1 for 28 years and counting. Ive been lucky in past with my control and not having complications. Given what I know now, it sacres me to think how we treated this disease when I was a kid. 1 test a day and if you were good, you were good. If your A1C was decent the doc was happy. Now i have CGMS, I test 10 or so times a day. My Doc is still happy as my A1C is a 5.8, but it took intensive work to get there. I remember more than 1 or 2 A1C’s over 10. Hell, 2 months ago I was at a 9.8. Its something that fluctuates, and constantly evolves. You cant have a total “Death Grip” on it, and sometimes its best to take the punches, learn from them, and do better next time. I do have my splurges. I eat healthy all week so at the end of the week we can go out for dinner (whatever that may be) The splurges are a goal to reach (of sorts) and it keeps it interesting. Dont get discouraged. It takes a lot of fine tuning to get the numbers right, but once you do, it flows…
Been T1 for just shy of 25 years. Kim, I’ve had lot’s of ups and downs. Lot’s.
My control was awesome for the first 5 years after diagnosis and being a college athlete was what helped me keep my A1Cs in the 4s and 5s for a decade, but I gradually drifted away from control over my D.
I decided to just go back to what always worked for me, lot’s of exercise, a tight regimen of testing and dosing, and a sensible diet that fuels my workouts. I work out at least 5 days a week, no excuses. I work out hard and push myself past 85% cardio output for 15 minutes 3 times a week. I watch my diet but I don’t limit my carb intake. That doesn’t mean I pound cookies and cake whenever I feel like it. Splurging for me is a cookie every three weeks or a few potato chips once a month. I had sliver of cake on my roommates birthday last week. High glycemic index foods will spike me just like any other diabetic so I avoid them and will only occasionally have them in amounts that avoid spikes. I never bolus or adjust my insulin dose just so I can have them.
My A1C has been steadily dropping for the past year, almost “officially” back into the 5s, after probably a decade in the 8s and 9s. Suprisingly to me anyway, I’ve cut my insulin dose in half over the past year, back to the minscule doses I was taking back in college. Labs look good, and I feel physically and mentally stronger than I’ve felt in years.
My advice, find something that works for you and stick with it until it doesn’t work anymore, than find something else that does. As the years pass, it’s easy to get down on yourself for mistakes, but dwelling on them will drive you crazy. Find motivation to stick with what works wherever you can find it. I keep a copy of my crappiest labwork with “Microalbuminuria” in dark letters circled on my computer desk to remind me of a way I never want to feel again.
It is never too late for better glucose control. A friend of mine is also T1 and he is haunted by the idea that since he got T1 with an age of 3 he will have no chance to avoid complications. This kind of thinking does not help at all! If you made it that far without complications you will get much farther with better control. As a word of caution you should not try to get from 7.6 to 5.5 very rapidly. Try to get 0.6 down every three months. So aim at 7 for the next A1c test. I say that because I have heard some stories about people with serious eye problems that worsened first with better control.
What am I doing to achieve an A1c below 6 (just follow the link):
-my basal dosage is matching my needs and I found the best basal insulin for me (2 shots of Levemir)
-I eat half the carbs I should eat but this is miles away from bernstein. I do not avoid carbs - I shoot them 
-I have a small spike after meals because I have found the fastest basal insulin for me (NovoRapid). Maybe Apidra will do the same for you.
-I snack very rarely. Most often I do not eat in between. Food in general is not that important to me.
-I never eat after 8pm to have a reliable number before the sleeping time and to avoid that something like protein or fat is causing a spike at night.
-I am more on the underweight side. This combined with sport helps to keep my sensitivity for insulin.
I am curious how you have managed to have an A1c of 7.6? No offense but something must go wrong very systematically to achieve that. Do you have an idea what this might be? Is something happening at night? Is it the spiking with stress? What did the CGM tell you about your body chemistry?
I’m not a veteran, but I’ve had T1 for 3 years and no A1Cs above 6.2. (and the 6.2 was first one after the 13 at diagnosis) I was at 5.8 for the last 2 years (since I started pumping) I went up to 6.0 over the last few months, mostly because of grad school and the difficulty I had keeping a set schedule. I don’t follow any low carb diet, I just control them, avoiding excess carbs. I’ve always had this philosophy that your body will tell you what to eat and I still follow that. I find that if I’m craving something and don’t give in, then I just end up eating more almost as bad foods but never satisfying the craving. I love trying new foods too. I don’t deprive myself of anything, I just have it in small quantities. I exercise 3.5hrs a week or so, which helps a lot too.
Thing that put me down in the <6 range was really tightening my basals with the pump. Eliminating lows has kept me from overcorrected and overeating. I still have some issues with my late afternoon, but have figured out that mixed snack (carbs, fat, protein) at 3pm keeps me from having lows and prevents me from snacking the second I get home from work/school.
I am curious how you have managed to have an A1c of 7.6? No offense but something must go wrong very systematically to achieve that.
I just came from a 9.8 to a 5.8 in a couple of months time. Its system shock for sure, but I dont think that having an average BG of 140-150mg/dl is THAT bad. You make 140 sound like 300…Thats a substantial difference. I think anything in the 6’s is good. Its not end of the world or onything.
An A1c of 7.6 is an average of ~170 mg/dl. This means being above the kidney threshold all the time. I think below 6.3 should be the general goal for the A1c.
Thanks all for the fantastic responces. They are great to read and gain some insight into how others deal with the big D.
So, almost immediately (last night) I ran out and purchased Dr. Bernstein’s book Diabetes Solution. A few recommendations is all I need to read something new. =^)
First common treand is low carb eating. I suppose this goes without saying, but sometimes we slide into routines that aren’t so desirable. I think thats first on my agenda to modify. Im curious to know about you high protein eaters and concerns with fat/kidney over usage. Any gout concerns? Is this a salad/meat existence?
The second thing is a new CGM. My endo took a 1 year hiatus and ive been placed with a new endo who almost immediately started changing things to get my A1c down. Thats good, but Im left not being able to fill in the blanks. So I need to get working on that.
Please keep to comments coming. They are greatly appreciated.
I am curious how you have managed to have an A1c of 7.6? No offense but something must go wrong very systematically to achieve that.
Honening in on daily blood sugar levels can be quite difficult and require at least a small amout of obsession. Prior to my youngest daughters birth my diet consisted of very low carb foods with testing 8+ times a day. I still sat around 7.5(±). That isnt to say I haven’t been exercising a lack of control to an extent, but the regiment for ultra tight controlI, I have alwasy found to be elusive. Im sure it is for others as well, otherwise D. wouldnt be such a nasty disease.
Do you have an idea what this might be? Is something happening at night? Is it the spiking with stress? What did the CGM tell you about your body chemistry?
I feel the issue is actually pinpointing the causes of spikes. Then minimizing the variables that can cause them. For instance, Ive never noticed if stress causes me to go high. The variance in testing of say 15-30mg/dl can take place just by washing my hands (water / moisture effects the OneTouch meters), testing 2 or more times at once, or when eating the same thing for lunch on multiple occasions with the same circumstances. Why? Not really sure.
My night slopes have never fully been reigned in. On the insulin regiment I was on before, I would go to bed at 160 and wake up around 80. I would of course have to do what was necessary to make sure I was at 160 or drop early in the morning. As of the recent insulin dosage change, Its the opposite, but I wake up closer to 180-200. with the random occasional 80-120. This is kindof why Im here asking questions like this. =^)
hi Kim, some great tips here. I’ve had it for 42 years, and the past 2 or 3 I’ve been a member of TuDiabetes and my a1cs have been all in the 6s - I get a lot of support here. here’s a post I just love called “start small”
http://www.tudiabetes.org/group/simplestepsforhealth/forum/topics/start-small
we had a contest a while back and it was one of the winning tips. I’d say one thing that helped me out a LOT was keeping a log for a while of everything like food, insulin, activity, stress. I also keep a log of where my sites are, so I can make sure I’m rotating well. I have a lot of scar tissue from all the needles and infusion sets over the years, and am loathe to have anything else sticking in me (so I’m not looking at a CGMS) - also I test 8-10 times a day. I’m not as low carb as Alan or Gerri, but I’m pretty low. I’m one of those people like Alan says that never tried a serious stab at it. I never eat more than 15 for breakfast, and usually have a low carb salad for lunch, and maybe a 15-25 gm for dinner would be normal. I just can’t give up a small potato every now and then.
Solo: Kudos on that A1c coming down (although that does seem rather fast).
Holger: Agreed. Id like to get down to the low 6s, but just hitting 7 would be a great start. Appreciate the input.
Awesome Marie! Thanks for the link.
Im curious to know what kind of breakfast your having. Is it on a work day? Something like a enegery bar? I have a bowl of oatmeal usually thats 26 carbs. Its lunch (60-80 carbs) and dinner (same as lunch) that get me. The salads from the local store near work avg 60 carbs! Funny thing is the wife and I were talking about going back to low carb dinners. Thanks!
Ah so another question, with all these low carb high protein diets, is cholesterol a concern?
It was hard intensive work, but I honestly feel better. Im a happier fat guy lol. now comes the diet!!! Thank you again. Its not easy, but it can be done.
my cholesterol is borderline. I am not taking anything for it. for breakfast I usually have Breakstone’s 2% cottage cheese which has 6 gms in a half cup. (they also carry it at Costco if you go there) or else I have bacon and eggs and a very small piece of George’s seeded wheat toast from la Brea Bakery. my husband works at home, and we do a lot of cooking and planning together for dinner. If I’m going to be out all day, I make something up the night before like tuna salad or leftover steak and antipasto-like cold veggies like artichoke hearts, roasted red peppers, along with lettuce and raw veggies. I just throw stuff in a plastic box and pack any lettuce and dressing separately. eating out, I’ll eat a chef salad or a spinich salad for lunch.
How do I do it? I learned years ago what I could and couldn’t eat or drink and I always look to my family, childern or grandkids for support. Now saying there aren’t the bad times (I deal with them now but before…) My A1C is at 8.2 and it has been at 9. something. I just hold on for another day.
Yeah, I think a CGM will definitely help fill in the blanks trendwise. At least for me, I don’t know a way around the obession to control my D and technology is a wonderful thing to help marginalize the obsessive behavior just a bit.