Hi Gayle. I'll tell you what has really worked for me as far as cutting back on the refined sugar/carbs--I drink a full 64oz of water a day, but I put the juice of 2 lemons in with it and one Stevia sweetener (the organic kind without any other added sugar--it's really not bitter at all). I have been doing this since about mid-February and have reduced my refined sugar/carb rate by at least 75%. I still need a chocolate bar to get me through some of the PMS, but I find organic dark chocolate on sale and save it for those occasions (ironically, it's in the butter compartment of the fridge with all my insulin). Also, I have been able to completely give up soda--diet or otherwise. For several weeks, I was having more lows and having to drink juice to bring me back up, but haven't had to do that for a while now.
I completely agree with the other poster who said diabetes is all about a balancing act. For me, I have to cut out all the fake chemicals and sugars to help my numbers (or at least as much as possible). I have an A1c of 6.4, but I'm about to start on the OmniPod and hopefully will see that number come down as my control gets tighter.
But I would strongly encourage you to cut out all that sugar. It's not good for "normal" non-diabetics, and it's definitely not good for us. At least do some research on it. Sugar isn't necessary for life and is highly addictive. I don't know about you, but my rebellious nature doesn't want to be a slave to anything--person, drug, chemical or otherwise. It's MY body and I will control it.
Hi Gayle. I agree with other posters that you should cut down on carbs. It gets easier. Once you stop eating sweets, you start losing your taste for them, I've found.
Since you became diabetic as an adult, and are treating it aggressively, I would think that your risk of complications is not too bad.
Is there any solid data on complications for LADA vs child onset t1?
I would speculate that part of the reason for your good A1Cs is that you are still producing some insulin. Were you given a c-peptide test? Unfortunately, those highs will likely further damage your beta gland, so you will require more insulin, and A1Cs will get higher, and control will suffer.
Hi Gayle: Here is a link to an old Gary Scheiner article (Gary Scheiner being the awesome author of "Think Like a Pancreas") that discusses post-prandial hyperglycemia. This is an old article, because he talks about the GlucoWatch and NPH! But there is good information here. Gary says that post-prandial highs hasten kidney damage in T1s. Another effect is that the "rollercoaster" of highs and lows just plain feels bad and lessens quality of life. For many, it is not easy to lower carb intake, but I think it is a worthwhile goal. Any chance you can get a CGM? My Dexcom has really helped me to see patterns and in a roundabout way has gotten me to go lower carb.
Unfortunately, A1C is kind of an old school indicator and fluctuations are very important. The amount of time spent in hyperglycemia is what will lead to complications because of how this slowly damages different tissues over time. A highly respected endocrinologist that has been in the R&D field for over 30 years told a group of Type ones that as if we are able to stay below 200 75% of the time, we will never develop complications from our disease. That being said, you are newly diagnosed and will be just fine, but you may want to start looking more at reducing fluctuations instead of relying on A1C results. I would consider a continuous glucose monitor, perhaps finding a new endo (or at least educator), read "Pumping Insulin" by John Walsh, and talk to an educator/nutritionist about counting carbs.
After 50 years, I can truly say that this is normal. Please, basal test, often. Know your high and low times, AND know they will change. I am having basal problems now, as the weather has changed. That is all it takes.
I constantly make basal changes. I know this board is not big on that, but my basal needs change so frequently, I really do not have time for an extended testing period, and I have never had a big problem. Do I have lows? Oh, yes (I was 11 once and still speaking with the paramedic who did not believe me until he did the finger stick!)
Diabetes is just an unsolvable problem. You just have to keep the faith.
Hi Gayle: I read your post and other answers. I have always had wild swings, and I had problems with not recognizing that I was going very low. My high numbers would be in the high 200s and 300s. Not good. I had the same response from my endocrinologist as you had, despite the fact that having such wild swings was making me feel bad, tired, and I just can't believe they're okay. She would say that since my A1C is in the 6.3-6.8 range, that's all that matters. So, I did some investigating on my own. It turns out that the ADA does not say or agree that A1C is everything. They use it in conjunction with pre and post prandial readings that they recommend be below 130 preprandial and 180 two hours post prandial. That makes a big difference for someone like you or me. My insurance company would not approve the Dexcom CGM because I had "good control" based on the A1C. I challenged that, without my doctor's help, I might add, and won because they based my denial only on the A1C and I based my appeal on the ADA's actual printed and published standards for good glycemic control. I'd say you need a CGM unless you already have one. It has made a huge difference for me, much more than a pump or any insulin delivery system ever has. I love the CGM. My other thought about all this A1C information is that we who have diabetes need to always remember that those without diabetes have A1Cs in the 5 ranges, so those of us above 5.8-9 are obviously not in the kind of control we'd have if we didn't have diabetes. Whenever some doctor tells me that my blood sugar control is good or pretty good because it is 6.7 or whatever, I always tell them that I don't like to hear that because, the fact is, it isn't really true. That's not good enough. I don't have any major organ damage yet (that I know about), but living with type I diabetes means the risk is way higher. Try to get a CGM if you don't have one. It really will help.
This whole disease is so overwhelming! I know there are those of you who have been doing this for many years; i just days (most) when i wish it would just go away! :). Compared to some of you, i'm still a "newbie" at this. I actually have a cgm that has been sitting in a box for about 6 months now. i got it about 6 months after i got the pump (coming up on my 1 year anniversary). i hear such wonderful things about it; my problem is that i already feel like my life is overtaken by this disease and spend so much time everyday dealing with it; the cgm is just one more thing i have to monitor, attach to my body, change out, remember where i put it, etc. i need to get over it because i know how useful it could be especially with the swings i have. any encouraging words would be great!
I'm not sure, maybe "relative" to the "straight" population, like at 6% you have a 2% higher risk and at 12% you have 20% higher risk of retinopathy? Still not the worst odds but, given the seriousness of what they are talking about, I'd prefer to do everything possible to stack the odds in my favor!
We all wish it would just go away--everyday--all the time. Years and time only make a difference in your experience and understanding of your diabetes, your bodys reaction to it... It is not easy.
I feel so intensely sorry for your pain, as we have all felt it. Unfortunately, your life is overtaken by it. No way it cannot be overtaken if you crave a future.
Stay here and talk to the community. It can really help. I truly wish you the best of all things.
Oh, pump and CGM are fantastic. I had to fight the contraptions (Oh! start with TesTape at 9!!! Pump and CGM are truly a GODSEND! Use the tools!!!)
Truly, I wish you the best--be vigilent, find good doctors and support.
I agree, we all wish it would go away, that it was all a mistake, that you will get miraculously cured or that they will come up with a cure in our lifetime ... some days are way harder than others and that is why I believe that joining this community and talking about it with ppl that are also going through those feelings will help!
Just a thought here, as I said before I am on the same boat looooove and crave sugary foods every single day, do you think that maybe that craving is associated with emotional eating?? For me I am convinced it is, and for other ppl to tell me "just cut it out, stop eating that if you know its bad for you, you'll be better off with a low carb diet" is like telling me stop listening to that beautiful song that makes you cry so much... ok, i get it the song won't render me blind or push me into ketoacidosis :/ but somehow I am attached and I can't let go!
You hit the nail on the head Maycrti...there is a big emotional component to what we eat...whether you are diabetic or not. I think you are wise to know your own feelings. And maybe letting go of the foods that give you pleasure is not right or a good thing for you. Each person has to do what feels right for him/her...
A good A1c doesn't necessarily mean good control. I, too rode that 30-300 roller coaster for years (diagnosed w T1 35 years ago). I'm now 44, use the Minimed and Dexcom, & things are pretty stable, but do still have occasional high/low moments, but not nearly as many. My A1c didn't change much, but I feel SO much better!! Acidrock is right - you feel messed up when your bgs are swining hard. I didn't realize how messed up till I went on the Dexcom and found out exactly what my actions were doing to my bg's. (I learned the little details that made all the difference, like... "I can't eat cereal for breakfast without hitting a hard spike, I can't run harder than 7mph or will will spike my bg", etc...) Those bg swings are very damaging to your cells. Everytime your bg is elevated, it can damage your circulation, which is what leads to the blindness, kidney failure, etc... The problem is, you don't feel the damage until it's there. You can't hear your arteries hardening. It is worth your every effort to figure out what causes the spikes to 300 and do something about it. Don't be overwhelmed by the big picture. Find one area you want to focus on (ie: your breakfast & post-breakfast bg) and start working to figure out how to better manage it.
I think we all walk around hoping that what we are doing is "good enough" and only time will answer that.
Just looking at the detailed CGMS data on that poster: I think those sorts of fluctuations are typical of the pretty good control that many (but not all) T1's achieve with A1C's in the 7% ballpark.
No, they are not the stellar Bernstein A1C in the 4% A1C range results. And I don't think they're as good as many of the most frequent/vocal commenters here who use CGM's. But as to real world results, I think they are way better mental models than the textbook and webpage-promulgated models where random crap and swings simply aren't shown. I look at that bottom panel of CGM graphs, the guy on NPH and an A1C of 7%who was spending many hours every day with a bg below 40. Been there, done, that! Except my A1C's were like 5.3%.
In terms of quality-of-life, the days I had of frequent lows were not fun. I'm not blaming it all on NPH, and certainly not all the days were like that, but wow when I was having stretches of frequent hypos like that it just shot my hypo sensitivity all to hell. Today my A1C is actually a little higher than back then but I don't miss the long hypo stretches at all.
Nitro, tell us how you deal with having both a pump and the CGM on your body at the same time. I agree with your post, but I noticed that Gayle says she has a CGM and hasn't gotten it out of the box. My thought is that all the diet manipulations can help, but nothing can help as much as knowing where your blood sugar is going, and the CGM is the answer to that. I'm just learning my CGM, but having worn it now for only one month, I haven't had even ONE surprise high or low because the CGM tells me where I am and where I'm going. I don't have a pump now, but I used to wear a MiniMed. Loved it. I can imagine that having enough sites for both the pump and the CGM could be difficult, but maybe you can give us some info that will encourage and reassure Gayle that using her CGM will be more of a benefit than a problem. I do agree with Gayle that it is another "thing" you have to deal with, but I also see the benefits of it as making it more than worth the extra effort and the extra piece of equipment to cart around all day.
I think it's all normalized to the risk at an A1C of 6.0.
At an A1C of 6.0, a diabetic already has much higher risk factor say retinopathy than the general non-diabetic population. It's possible that below some A1C, the risk stops dropping but is still higher than the general population. There are just so few diabetics with A1C's less than 6.0 and so little statistics.
And note there are some complications (e.g. hypothyroidism) that seem to be completely unrelated to bg control, and some others risks (e.g. hypoglycemia and "dead in bed syndrome") which increase as A1C goes lower.
I've been pumping for 16 years, so the addition of the CGS was no big deal. I've asked my endo about the possibility of scarring my healthy adipose tissue in my abdominal area, and he said he hasn't seen it yet... I use every inch I can - reaching way over to the sides, go as low and high as I can go... rotate, rotate, rotate sites. As far as being one more thing to haul around... I'll take that anyday!! It's like complaining that you have too much money! What a gift! Every chance to get better control, jump on it. Statistics for us aren't too pretty... and I don't want anyone else to have to add to those horrible statistics. People are willing to carry a cell phone all day - why not a CGS?! I bet someday they'll be able to get the sensor read-out on our phones... Until then, I'll just add it to my arsenal!
It's just too cool to wake up at night and not have to lie there wondering what my bg is, but too tired to haul my butt out of bed to check it... I just look at my sensor! If I had to give up the pump or the sensor, I'd keep the sensor, hands down. But having both are a dynamic duo! I just wish they'd come out with a faster acting insulin that doesn't hang-around so long, so that we can get more immediate action. (I remember the transition from Regular to Humalog - I thought I'd died and gone to heaven!!) I will admit, when I'm in meetings with my CGS, pump and cellphone all on vibrate, it can get pretty distracting if all 3 decide to dance!! Again - well worth it!!
You do have to be careful to watch the trends and not over-react to the acutal number. It's so tempting to want to keep bolusing when you're staring at a 200... just gotta remember that the 'rapid' insulin is going to stick around for at least 4 hours, so it will eventually get it's job done!
Alex - gotta know - why'd you go off the pump?
If it was normalized to 6%, wouldn't the 6% be zero then?
Setting 6% to be zero, would mean that there was zero risk at 6%.
In fact a diabetic faces a substantial life-long risk from many of the complications (especially the ones on that chart) even at an A1C of 6%. And the risk rises rapidly as A1C rises.
The more complete DCCT graphs show the risk evolving as number of years goes on, for different A1C's. But it's still important to note they don't have any data that ever shows the risk to be zero. (even non-diabetics have a risk of retinopathy). e.g.
