Stability of Numbers - How much do we control?

My fasting is under 100 99% of the time. It wasn’t before I learned I had gastroparesis. Now I have good fasting, but get no sleep because it can take 7 hours for dinner to hit:) Sucky trade-off.

My numbers are in range about 2/3 of the time. The third they’re off, they’re way off with either stupor lows or quite high due to gastroparesis. Makes insulin timing a crap shoot. I’d be happy with less in range numbers & a lower standard deviation, not that I have this choice.

I actually dislike the term “control.” To me control means I am able to make my numbers do what I want, and this is really not true. Even when I was in my best control about a year ago—testing 10+ times a day, logging everything, being very careful about carbohydrate counting, eating moderate carbs, exercising daily, and so on—I was only able to get an A1c in the high 6s. It was rare that I would have a day where I stayed between 4 and 10 (70 to 180), most days I exceeded that range either high or low or both. I prefer the term “management” when talking about diabetes.

I don’t know why some people seem to have an easier time than others. I agree that there are some who seem to have very stable blood sugars as long as they estimate carbohydrates fairly well, while others have highs or lows caused by the slightest mistake or change in activity or routine. I would count myself in the latter. I think there are a number of factors that have an effect on how stable numbers are, though:

  • I think lifestyle/routine has a lot to do with it. One of the biggest differences for me now compared to a year ago is that I've gone from having sort of a regular schedule to having no such thing (between full-time grad school, part-time job and on-call job, not to mention all the stress that goes along with this!).
  • I think (from what I have read) those diagnosed as adults tend to have a very long honeymoon compared to those of us diagnosed as children, and this may play a role as well. (Someone at one of my jobs was diagnosed as an adult with Type 1 in the last two years and has a ridiculously easy time of managing her diabetes compared to me.)
  • I think often Type 2s have it easier in terms of their glucose range, and on forums like this often both Type 1 and 2 reply to the same posts. (Please not I am not saying Type 2 is "easier," just that they usually have a much tighter range than Type 1s.)
  • Those Type 1s who are lucky enough to have access to pump therapy and especially CGM systems have an enormous advantage over those who don't (I've come to the conclusion that a CGM is the only way I'm going to get an A1c below 6.5 without having too many lows.)
  • Sorry to say, guys, but I really think girls have a harder time with diabetes due to those lovely hormones! Also, some people have more stress in their lives than others (stress can have a major impact on control), some have other health conditions or have to take medications that can affect blood glucose, etc.

So, I don't think it is necessary a matter of "luck of the draw" as I do think there are factors that contribute to control being easy or hard, though they aren't all factors that can be controlled.
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Oh stress and disease… that’s a whole other ball of wax that people know little about! Yet, one cannot discount it having some kind of role in how healthy we are, how we cope with health issues we cannot control (i.e. stress can influence those for the better or for the worse). It’s like the elephant in the room that no one wants to acknowledge/take seriously, or however that saying goes.

Thanks for sharing your own experience and thoughts, Jennifer; it sounds like you do a great job of handling your variables. Yes, the very word “control” implies some kind of perfection we attain. When I started on insulin, without realizing it, I believed that. As soon as I get “this whole thing” figured out, I’ll just go merrily on my way, counting carbs, taking basals and attaining good (if not stellar) results. Right.And I don’t have the hormones…or the stress…to cope with!

Also, I don’t know about true type 1’s, but for LADAs our slower onset can sometimes make it harder not easier, as our insulin needs change as our pancreas slowly ceases production.

Wow…if you do not mind me asking how old were you?

That’s incredible Gerri! Especially with gastroparesis, and I don’t know if you still produce some insulin as well to throw things off. My total numbers probably are in range about that percent but nothing like 99% fasting. I find it hard to see how well I’m doing when my basal “drifts” every couple weeks and throws things off. Now that I’ve had that big leap in A1C I’m thinking that affects me even more than I thought. I’m hopeful my switch to Levemir will prevent some of that.

Just to clarify, Lil Mama, it isn’t that I used to be a type 2 and am now a LADA. Your Type doesn’t change. I was incorrectly diagnosed. LADA can be easily mistaken for type 2 because oral meds DO work for awhile. If anyone had done a c-peptide and antibody testing when I was first diagnosed they would have seen that I was in fact a type 1 (with a slower onset).

My honeymoon period was over 19 years ago, and I was only nine, so I don’t remember it that well. However, I do have my logbook from that time and know I had a lot of lows, but could go days without highs (and that was on one or two shots per day only) although I certainly still had some highs, and my insulin doses were quite low for a while (only 7-8 units a day). The upside was that it only lasted two or three months before I started going high-high-high constantly and the honeymoon was over!

Nowadays my doses fluctuate about every week or so. It seems to depend a lot on activity level, stress, illness, and hormones. Or at least those are the main factors. My best control is when I log absolutely everything and tweak settings slightly every week, or sometimes every few days! But my overall basal rates and ratios do not change dramatically from day to day. And as I said above, an awesome day for me is staying between 4 and 10 (70-180), but achieving that is fairly rare …

I can imagine it would be tricky if your pancreas randomly decided to put out a little insulin one day and not another, but I assumed the longer honeymoon for LADAs would just gradually end (and you’d gradually need more insulin) rather than be variable from day to day.

I’m not sure about the LADA honeymoon, Jennifer. I’ve read a couple places that it can have “spurts and stops” for awhile, rather than just a slow steady decline. I’ve never heard a definitive answer on that. I was only making .38 and .70 (two labs) a year and a half ago so I would think I wouldn’t be making any now. Every time I have a sudden unexplained fluctuation (a pattern, not just one number), I wonder if that is what it is. But others say it’s just normal type 1 stuff. When you say your doses fluctuate every week or so, by what percent? The up and down I’ve had every couple weeks with my basals has been from about 12 to 16 units which IS a 33% increase. I’m trying Levemir to see if it will reduce that flux.

Doesn’t appear that I have much, if any, insulin production. I take relatively high doses for eating so few carbs. Some of that is due to thyroid supplementation.

Having had horrible fasting numbers makes me wonder if what’s attributed to dawn phenomenon may be mild gastroparesis for some. It tends to be most apparent with evening meals with our bodies slowing down & dinner usually being the largest meal with more protein.

Feel your frustration. Basal is a pain! Do hope Levemir helps.

Thanks Gerri!

I was 58 when I was diagnosed, which just fit well to the stereotype many people have of type 2’s as middle aged and overweight, so they assumed that’s what I was I had been 40 pounds overweight but had lost part of the weight before diagnosis and continued to lose down to my optimal weight.

Is your gastroparesis caused by diabetes? I noticed on your profile you’ve only had it for two or three years, which doesn’t seem long to develop complications. Did you have diabetes for a long time before you were diagnosed?

I met a Type 1 this past summer with gastroparesis whose diabetes was very hard to control. She said her numbers ranged from very low to extremely high every day. But she’d had Type 1 for 45 years, and I thought it usually took a long time to develop.

Sorry if these questions are too personal, don’t answer if you’re not comfortable, I am just curious!

Sounds like it would be an interesting thread to read! LOL. I think it would be interesting to compare daily numbers, though, and see if there really is a big difference (just because I think there is doesn’t mean I’m right!).

Mine don’t sound like they’re as big. I really just tweak things, changing my basal rates by 0.05 for one or two segments, or changing my carb ratio by one (such as 1:10 to 1:11). When I do experience a “big” change it might be my basal rate going from 25 units a day to 23, or changing a carb ratio from 1:10 to 1:13 over the course of a few days. When that happens it’s either due to hormones, illness, weight gain, or a sustained increase in activity.

I have heard people talk about having sudden decreases in insulin need and wondering if they still make some insulin (and apparently a recent study of long-term Type 1s showed some people who experience this actually DO still produce some insulin), but this has never happened to me. I have more problems with having stubborn highs that last all day than random lows that I can’t connect to any precipitating event.

Happy to answer.

Yep, my gastroparesis is due to diabetes. It’s a neuropathy. Mine, thankfully, isn’t a severe as others. I don’t have pain, vomiting or diarrhea after eating. There are people with gastroparesis who aren’t diabetic & their cause is unknown. There’s no cure.

Supposedly, gastroparesis can heal with tight management. Well, that’s a Catch-22 since it’s near impossible to avoid highs when I can digest anywhere from 3-7 hours after eating. Sometimes, I’ll digest part of a meal fairly quickly & the rest many hours later. It’s a huge gamble every time I inject where I’ll end up.

I was diagnosed because of crazed numbers. Lows after eating & huge highs many hours later.

My endo said I probably had creeping up high BG for about 5 years before I crashed & burned with DKA. I admit I wasn’t good about going for annual blood tests & rarely went to the doctor. But, the tests I had showed good fasting BG. We know, of course, that doesn’t show the whole picture.

Aside from being comfortable with higher doses (I would be terrified to take more than 5 units meal bolus unless I was starting with an extremely high blood sugar), the type 2’s I know seem eat things, bolus and have acceptable numbers that I couldn’t

So, you are refering to Type 2’s on insulin than? I guess I couldn’t really comment on that than because no insulin for me (yet). But that could be said for the Type 2’s on meds too - some of us can handle high carbs and get good numbers and some of us can’t do that. Although I have heard people many times on here say that it isn’t good to “cover” your carbs with insulin (meaning eating whatever you want and not watching your carbs and figuring you can take care of a poor diet with insulin). I guess this is up for debate. But it does seem that many Type 1’s can have a more varied diet and have more high carb stuff but this will be because they are covering those carbs with insulin. I still don’t understand all the technicalities of doing the insulin so I can’t say what is normal and what is not on that point.

For me, it can vary sometimes and sometimes pretty predicatable (I like those predicatable days). Sometimes I can eat the same meal and start at a similar number that I had before when I ate that meal and end up higher than normal after I eat it - why? I have no idea. Does this mean I shouldn’t have that meal again? Well, no because most of the time I eat I have a good number at the end of the two hours.

It is like one of those WTF? moments - “This was fine the last time I ate it - what did I do wrong?” Nothing. This morning I woke up at 90, had the same old boring breakfast I always have, 2 hr later I am at 81??? What? (I did test a bit late) but normally I could be anywhere from 105 to 125. So, blame the meters. :slight_smile:

Obviously, yes, the Type 1 have a harder time because of the balance of those lows and highs - I don’t know how they do it. But it does seem some of them have greater success with keeping their numbers more in range than others. Perhaps some just don’t experiment enough with the foods etc to figure out how to achieve that balance and some have.

Thanks, Jennifer, that helps. When you referred to “tweaking” your numbers, I assumed you meant small changes, but wanted to be sure. Mine is strictly my basals. My I:C ratios have been amazingly stable for quite awhile. I just lowered my lunch ratio to 1:8 from 1:9 where it has been since January. My breakfast and dinner (1:7 and 1:18) haven’t changed since January and I see no indication to do so. That’s why I’m seeing if switching to Levemir will give me more basal stability. My “drifting” has no precipitating events (that I see).

I like your list JohnG -so true! Personality of the person plays a lot into managing this disease.

I have always been a person who has strong willpower with food. I am also very good with details, schedules and very organized and I don’t give up. I think those are helpful qualities to have when you have disease that needs to monitored 24/7 and a have routinue.So I think I mastered that pretty quickly when adjusting to my diagnosis. If you are one of those that doesn’t like to think about those things, you might have a harder time keeping with a routinue. Some people just don’t do good with a routinue lifestyle.

Yep, we chicks have it tough. I know I will not have as much control at certain times of the month. I hate that. :slight_smile: