after 5 years i still haven't got 'my' diabetes figured out....i still go high and low every single day. my A1c is 8.7....i wake up either high or low....rarely 'good'.
i started logging EVERYTHING a few months ago thinking that would help me make some sense of it all.....nope. still high, low....rarely inbetween.
normally i am considered intelligent....lol and i UNDERSTAND whats supposed to be happening, its just never at all what i expect.
im trying to get on the pump, but....will i be able to do it....
It was impossible to “get” my diabetes until I got the pump. My basal rates vary throughout the day and with Lantus not meeting those needs it was impossible not to go high and low constantly.
Not that my control is perfect now, but being on the right insulin regimen and making sure your basal rates and other settigns are accurate makes a huge difference.
im hoping that a couple of months worth of logs will be enough for them to figure it all out for me…there doesn’t seem to be any rhyme or reason to my numbers. and i swear somedays a garden salad will send me through the roof like i just ate a whole cake or something.
i think that the pump will work out better for me than trying to keep doing this. its frustrating knowing im not an unintelligent woman, but really feeling like one!
I’m glad you’re getting a pump. Keeping records so you can see trends at different parts of the day will be important to setting basals. We’re with you, keep us informed! So glad you’re logging everything.
Sometimes in logging it helps to log more ways than one. I do both a notebook with time, test, food & grams (I guess as everyone does), then short acting amount, AND a chart so I can view longer term trends more easily.
I test an hour after a meal when there is any food I haven’t got down pat so that I can follow up with some more insulin if needed - and i know what one gram should raise me and what one unit will take me down, and I keep track of how much is on board. Keep working at it. A pump will help lots!
You’re certainly not alone. My A1c’s run in the 7’s after 35 years of having T1 but there is a lot of BG bouncing around that is getting averaged out, and I’m doing what you’re doing - exhaustive logging - in hopes of tightening control to improve on that. I’m on my own in doing the analysis however. The first thing the logging did was help me figure out the correct basal dose (using split dose of Lantus) and I’ve been very happy with that. Bolus prediction is still giving me trouble, but I’m working on it.
What are you logging? Are you keeping track of carb/protein/fat for each meal (with a kitchen scale); of your BG before and 3 or more hours after each meal; and all insulin injections including corrections? Also ketone level when you go high (I just added this - I bought my first bottle of ketone strips a couple weeks ago after 35 years of having T1!) It took me a while to figure what I needed to log, but I’ve found that I need all this data (which is a lot!!). I hate logging - I much prefer to just judge by eye, eat and correct if needed (which has been my technique for all these years). But I’m hoping that the logging will pay off and I’ll be able to lighten up on the logging once it makes more sense. I think (hope) I’m getting close.
ive been charting every hour BG, carbs, basals, boluses, corrections, actually what it is im eating and amounts, and where i am with my cycle.
i hooked up with a CGM for a few day…lol…the dawn phenomenon is weird. like i woke up and ate a high carb meal at 4am!
i think after the cgm and super tight logging we’ll figure out what i need in a pump…i hope.
i DO need to get a scale…but, i eat mostly beans and tofu and eggs for my protein, so those are all pretty easy to figure out, and most everything else is a measure, not a weight.
thanks for not laughing at me for being so damned confused after 5 years! its so frustrating, and i haven’t had the ‘best’ guidance these years…
All that data is useless unless we know what to do with it.
Do you have any books to help you? Pumping Insulin or Think Like a Pancreas? Start with one of them and work on fixing one thing at a time. One thing at a time.
Getting a pump is not going to fix anything just by getting it. We need to learn how to use it effectively - how much basal, when to bolus, when not to bolus, how much to bolus. In other words, don’t rely on the pump to give you control. We have to TAKE control, examine the data critically and fix ONE thing at a time.
For instance, one thing that helped me get off the roller coaster of highs and lows was learning that bringing down a high too quickly (say from 250 to 80 within two hours) can result in a ‘rebound’ in which your liver starts pumping out glucogen because it feels you dropping so fast. Brining the highs down a little more slowly evened out the bumps. Now I’m on to the next thing - avoiding lows during long runs.
You’re not too dumb. Diabetes is just crafty and erratic. The bastard.
Yes, that is normal. Don’t worry too much about the CGM matching the meter number. Synchronize them when prompted but don’t keep synchronizing just to make them match.
Use the CGM to spot trends - are you going up, down or staying level. If up or down, how fast? Compare the chart of your CGM values with your other data to the effects of different foods or events. For instance, you ingested so many carbs and took so much insulin at lunch time. What does the CGM show in terms of how your BG reacted - up, down, fast, slow, no reaction? If you went up fast then leveled out quickly you probably bolused correctly. If you went up and kept going up, you probably underestimated the carbs, but you might have had a fatty meal, in which case you should have used an extended bolus. Did your GCM show you dropping fast? You over corrected.
It’s a constant balancing act. Like riding a bucking bronco all day long.
Keep trying. If you ever get it perfect let us know and we’ll all envy you.
When are people going to realize that there are too many factors involved to “get it right”. Normal glucose should not be in the same sentence as Diabetes. Yeah sometimes it can run ok and or fairly consistent and then all of a sudden hours, days, weeks of haywire. Without a cure or a cloosed loop system it will never be right despite the grueling efforts. If I had a penny every time my sugar went below 70 or above 125 I’d be a multi-millionare ten times over.
So the point is . . . ? If you mean there’s not that ‘one thing’ that will make everything work together, I see your point. Otherwise,
People are NEVER going to stop trying to ‘get it right’ no matter how many factors are thrown into the mix. They just won’t. Because the alternatives are to just throw things at it and pray for the best or to give up all hope.
No thanks. If I ‘get it right’ for a day, or for a week. I"m happy. When it goes wrong try something else until I ‘get it right.’
Just because we’re not going to reach perfection is no reason to give up trying. I look at it like a game of golf. You hit a beautiful drive off the first tee, make a difficult approach shot, then three putt the hole. On the next hole you shank your drive but save par with a nice approach and a good putt. But you don’t quit the game. You keep trying different things until you string together three or four perfect shots on a hole and then try to repeat it.
An insulin pump may help, but you still need to make sense of the numbers. I can’t tell you what a revelation it was when I started looking at the charts and graphs that Medtronic provides when I upload my son’s pump. When I finally learned that the ratio of bolus insulin to basal was supposed to be at minimum 60/40, and more like 50/50, I used the graphs to determine that my son’s was actually 63/37 - his basal rate was too low. Raised it, and viola - no more swings. I also realized that what matters most is that the standard deviation of his readings is no more than about 70 (which is about the difference between a “normal” low value of 80 and a “normal” high value of 150). As he grows, I periodically check both the ratio of bolus to basal and the SD, and those tell me what I need to do to adjust to his changing needs.
Which is a long-winded way of saying, first, while you’re charting your data, take an average of your daily bolus totals and compare it to your daily basal, and see if you’re outside of the 50/50 ratio, and second, once you get your pump, don’t stop looking at the data to see if you can fine-tune your insulin delivery!
i just upped my basal 1 unit each in the am and pm…im hoping that will help. i get the feeling i might need to up the am dose 1 more.
FINALLY, after 5 years…im in a place where i am willing to not be afraid of it, and work WITH my D.
i was out for a walk earlier and was thinking (getting a bit angry, actually) that my docs never once mentioned any books, groups, websites, classes…nothing. the only thing they told me was that i don’t fit in with any of their other patients. most newly dx’d 1’s are children…and that the type 2 classes weren’t going to be helpful…so, i was alone. for 5 years. it sucked…lol
now i ask my doc and the CDE each time i go in if they’ve checked out tudiabetes…lol…i’ll get them to make it a well known resource for d’s
Personally, what helped me go from really high A1cs to 5% A1c was to simplify things. Diabetes is best controlled without throwing in so many additional factors (in my opinion). For example: pumps are a great tool but i had one for 7 years and I do much better without one. So you don’t NEED one-trust me. It is about what you prefer. Now about your control…did you know that a low carb diet helps greatly? Did you know that every time you give insulin a certain amount of it doesn’t get absorbed into the body? This amount varies each time you inject, meaning the less insulin you give, the smaller the error margain. This means that low carb=less insulin=lower error margains=less bouncing around up and down with blood sugars. Try making things simple. Eat fewer carbs, make sure to wait the appropriate time before meals depending on your glucose levels and make sure to check your sugar enough times throughout the day. Try to exercise at the same time every day (you don’t need to exercise more than 15 minutes) and try to never give insulin within 2 hours of going to bed because this could cause highs or lows in the morning. I make sure to have good glucose before going to bed so I wake up feeling good. (this means i eat an early dinner and then i don’t eat again until the next morning) Honestly, the above recomendations work really well-and I’m a writer and busy mom of twin 11 month old babies. How do you think Bruce Lee got so good? lol…he always said, simplicity is key…he got better by removing things, not adding. let me know what you think we know you are intelligent by the way
can you achieve a varied enough diet with low carb? i don’t mind taking supplements, but i think doing the majority by food consumption is optimum.
and, when you say low-carb…what does that mean? 15 a meal? or none a meal? how do you feel without all the good grains in the world? i find them essential (i think).
i wouldn’t mind going low-carb if i felt certain that its actually good for you. i eat a lot of quinoa and amaranth for protein, and beans and bean flours.
its all so confusing! lol…i just like a really good rounded out healthy diet packed with as many whole foods as i can get. the only ‘processed’ foods i eat i’ve usually processed myself…lol
I had the same problem and the pump has worked great for me. My A1c is still around a 7.3, but that dropped from huge heights. I still have swings and the dawn phenomena (so glad another adult has that still!) But at least with the pump i can set it so my baseline is steady if I eat or not. Now the biggest problem is exercise and food intake. My body STILL doesn’t process the same as the freaking carbs on the package! Good luck!
I don’t mind the “not getting” part, I just wish it would stop trying to rip my throat out.
I mean come on, after 40 years, enough with the games… play straight already! A nice, clean simple cause and effect… just once in a while! Crunching data this way will only provide so much. After a point it is a tsunami of worthless raw information, and will induce brain death, or a blank glazed stare!!! You gotta stop beating the heck out of yourself this way.
It could be as simple as too tight control which makes you low then you rebound. It could be dietary all by itself. There are different channels to explore, seek knowledge on them… then impliment what you understand about them. But you start somewhere, and focus on that one arena.
Once you have that tweaked, you change the “channel” and see what you can figure out from that isolated piece, that next channel. Once you’ve tried a couple different ideas, explored different ideas better…it won’t be as daunting…
Don’t buy this perfect control myth. It is very very false.
I agree, Stu…“Perfect” control is a myth. I do not beat myself up if I get that one a1c that is "off "every year( Mine is tested at the doc’s office about 4-5x per year.) My latest, at the end of May, was 7.7 ;the one before was 6.8. and I had a in 7.1 before that… I do moderately low-carb, eat plenty of green vegetables and as sysy above says, I do up to 15 minutes ( usually walking) of exercise daily. I still will end up with a few random highs or lows out of nowhere. It just goes along with the terrritory of type one.
Boedica, sounds like your doctor does not know much about type one…Had you considered going to see an endo, or even driving to another locale a couple of times a year to find a “team” that can work with you?
I find that periods of stress ( like for me, the last few weeks of the school year: I am a public school employee) tend to render my A1c higher. My doctor and I both know to expect higher A1c’s then. And by the end of the summer, away from the job on summer break, I will be in the 6’s again; that is how it is… Do not get discouraged…
God Bless,
Brunetta
Type 1 42 years
Insulin Pump 7 years befor
