Feeling bad about numbers compared to others

Type 1 and LADA
1

I love tudiabetes, and feel like I have gotten great support and information here. Having had Type 1 for a decade, I long been proud of my control…all A1C’s under 6ish, no hospitalizations or complications, etc. My endo has always assured me I am doing great. Diabetes control is my number one concern above everything else, and I felt good about how things were going.


But lately, I am starting to feel discouraged by some of what I have been reading here People who say their blood sugars stay between 90-140 at all times (or 83-110), talk about not going over 100, report what I think of as very modest numbers as awful "spikes" and say that there are Type 1's out there who have never experienced a low. While I have never needed assistance from a low, had a seizure or anything like that, I get them several times per week, and always have. Also, things will go well for awhile, and then I will have a random day like today where I wake up with a BS of 220 (went to bed at 98, and have bee waking up around 80 for several days in a row). Why? No clue really. Are there really people out there who do use insulin but are never are low or high? If so, please tell me how you do it. And what about you folks who have had diabetes for 40-50 years....have your numbers always been perfect?
Thanks for everyone for their support on this site!
2

Okay, now I feel bad about my numbers compared to YOU! :wink: Seriously, all your A1Cs are under 6ish? I can only dream… I think an A1C of 6.5 is great for someone with T1, and I think it sounds like you have awesome numbers.

You can’t always compare yourself to the perfect people online. Somehow they don’t all seem to exist in the real world… :stuck_out_tongue: (Not saying there aren’t people who keep themselves under very tight control, just that they aren’t found in the same proportions in real life as they are on the internet.)

3

I;ve had it for 42 years. I have never been hospitalized because of my diabetes, or passed out, or a seizure. My a1cs for the past two years are in the 6s. I don’t have too many lows, and like you, occasionally wake up with a number that surprises me. I test my blood a lot more now than I used to, at least every 3 hours while I’m awake. There’s a Group here called the 5 Club where they have a1cs in the 5s. Most of them really are strict about low carbs. Alan from BC Canada is a nice guy there that’s willing to share his success with type1.

I get a little annoyed, not discouraged, when I read people saying things like “oh no! I went to bed with a bg of 100 and now when I wake up, it’s 112” Pleeeeeze!

4

Cat, the only competing you should be concerned about in my opinion is competing with yourself, and it sounds like you are justified in being proud of your level of control. Each of us is an individual, and our disease manifests itself differently in each of us, almost like there is a different disease for each of us. I’m a T2 and have it a bit easier but I still have variables that I don’t know what they are in order to be able to learn how to compensate for them and have better control. Don’t beat yourself up, just do the best you can, and if you are looking for ideas on how people here will share. Also I think the reason you see more on line with tighter control is that we who are serious about control are more active on line always looking for new information.

5

Cat, there is a saying that talks about “comparing your insides to everybody else’s outsides.” Not a good thing to do. What that means is it’s real easy to peek into someone’s world and say “wow, they have it all together” and compare it to how you feel about things inside and in those quiet scared moments we all have. But you have no idea what is going on inside that person.

Comparing, in general, is not a useful thing to do. There is alway someone prettier, richer, more popular and with better blood sugars. Yeah, most of us would love to have all our A1Cs under 6ish! This board consists of 14,000 diabetics with 14,000 different stories. We are Types 1, 2, LADA, Gestational and MODY. We range in age from children (or their parents) to senior citizens. We manage our diabetes by diet and exercise alone, oral meds, insulin via MDI and pump. We have other health considerations or are very healthy other than our diabetes. We have excellent insurance and none at all. We are omnivores, vegetarians and vegans. Some of us have time and money and cook extensively; others of us grab food as we can. We live in the boonies, in various countries, in big cities. We have families, are single, live alone, in college dorms. Ok, you get the idea. We are all different!

Some of us work as hard as we can at controlling our blood sugars and still have widely varying blood sugars. Some of us combat severe lows, others can’t get their numbers down. Some of us have that great combination of hard work and the luck of the draw that means we have relatively stable numbers most of the time. I think we all make choices too about what we do to get our numbers. It’s like in school when you are working and taking 5 courses and you know how much work a particular course will take to get an “A” but that course isn’t in your major and a B would be just fine. Speaking for myself, as a vegetarian and a foodie I am not willing to eat very low carb. Sure my numbers would be better, but It would take away some of the things that matter most to me in life-I eat about 100 carbs a day and am happy with the results of that. Having very tight control for most of us takes a certain degree of obsession. Is it worth it? Everyone makes that choice for themselves.

There are no perfect diabetics. If someone describes themself that way, well…Most Type 1’s have unexplained highs and lows occasionally no matter how hard they try. All we can do is see if there is any useful information in those numbers (oh, it was THAT food again…guess that has to get crossed off the list!), correct, and move on. Or change doses or I:C ratios and move on. Type 1’s who have never had a low? Not me. Blood sugars always between 90 and 140? Would be nice, but I aim to spend as much time as I can there, and not sweat the times I don’t.

My question to you, Cat, is: You have excellent A1Cs, why is it not good enough for you? Something to think about.

My question to you

6

Those are really good points, thanks. I guess I felt that I was doing really well, but now I wonder if my expectations for myself aren’t stringent enough. Between 90-140 all the time? ALL THE TIME? I wish. I have tried not to focus too much on my individual numbers but the overall picture, but now I am wondering if I am not doing enough. Am I being too lax? Will I pay for this later? Have I been misinformed? I feel I have gotten excellent diabetes care and education, but much of the information I have received here does not line up with what my diabetes team has said. Leaves me feeing kind of confused.

I have been striving for good enough, not perfect, as I really believe that perfectionism is a recipe for lifelong depression and anxiety. But maybe reading people wax on about numbers in the low 100’s being “too high” has tapped into a dormant need for perfectionism within me. I wonder if I am fooling myself into thinking that I can’t have any A1C of 4.8 anymore with lots of hypos (I used to), maybe I am deluding myself by thinking that A1C’s in the 5’s are “good enough.” I think maybe there are some folks on insulin who never go low, or high, and maybe I should aim for that instead of just “good enough.”

7

Hi Cat,
I’ve had Type 1 since September and my numbers really vary. Last night I went to bed 93 and work up 143. I just shrugged, took my Lantus and Humalog and had breakfast. I could be really strict but food is something I enjoy. My last A1c was 6.9 and before that was 6.7. My endo says I’m doing great. I also like carbs and am not willing to go without them.

8

I hear you, on your last sentence! Some of the things people are so stressed about seem like a dream to me! LIke when I was complaining to a friend about the 5 last stubborn pounds of baby weight to my friend who has been trying to lose like 50. Oops, my bad.

Any tricks you can share about making it that long with the big D? 42 years is a loonnng time.

9

Cat,

I find it hard to believe that any T1 stays between 90-140 all the time, or even most of the time, or even for two days in a row, if that’s any consolation. Impossible to believe that any T1 never had a low! Or, a high.

There are T2 members who are doing great keeping their numbers very level with exercise & low carb.

My feeling is that level BG & a low standard deviation is key. Bouncing from high to low, which could result in a great A1c, is more damaging.

Aiming for perfection–no thanks.

10

I understand exactly what Cat’s talking about. When I first got on the site I had those exact same thoughts. After 36 years of taking care of myself, eating right, testing constantly I would be THRILLED if I went to bed with 93 and woke at 143. I consider 143 a great BG reading! In fact it was 48 last night and is 147 as we speak and I am absolutely fine with it. I go from 28 to 250 or higher (not rebounds either) on a regular basis a lot of time for no good reason. I’ve passed out completely at least a half dozen times. My last A1c’s were 5.9 & 6.3. I’m beginning to believe people are either prone to good A1’c or not.
I think a lot of times people forget about their highs and lows. I also wonder when someone says they freak about a 140 they’re a T2. I also asked my Doctor, to just how do I compare to other patients and he said I was doing fine. Don’t freak out, I’m not perfect never was. If I can keep my reading between 80 and 110 for awhile FANTASTIC! I’m currently on a good run, but I know it will shoot through the roof or drop through the floor eventually. You might consider taking Alpha Lipoic Acid as a supplement. I don’t do many pills and I can’t guarantee it but I tried this recently and I definitely noticed a difference in keeping things level.
Good luck.

11

Cat, every time I mention to my Endo something I read online about how great other T1Ds are doing and why can’t I, he gets mad and says “do not pay attention to what others are doing.” Focus only on what you are doing and can do. The others don’t have any relationship to you and your experience." I think he is right. I won’t even dare tell you what my BG ranges are. It would shock you even though my last two A1c readings were 6.4. I don’t know if there is such a thing as “mild” t1d but if not, I don’t know how there are people who take a total of less than 30 units a day on the pump but apparently they are out there. But like the other poster said on here, I suspect they are in the minority of t1d folks. Just compare yourself to yourself. (t1d since 1982, pump 10 yrs)

12

I have encountered type 1s who say they never go very high (i.e., never go over 250, for example). I’ve never encountered one online or off who has said they never go low. Who here has never gone low as a type 1 who is not honeymooning?? If a type 1 never goes over 140 (much less 100!) and never goes low I would seriously wonder whether they were misdiagnosed and might have something else like MODY, or else be in a honeymoon period where they still produce a significant amount of insulin. I know type 1s eating a low-carb diet and even they can’t achieve that kind of control all the time.

Also, there have been times when I’ve thought someone had amazingly good control and then found they were type 2 when I checked their profile. I tend to check now if I find myself thinking, “Wow, how is that possible?!”

Personally I have both highs and lows and even my best days seem to have wide swings compared to a lot of people here. I get depressed when I download pump data and see how spiky my graphs are even when I am doing everything right. I feel like a lot of people are able to achieve better control than I am.

I often don’t talk about my numbers because I feel like they are terrible compared to so many others. Even compared to yours. For the past few years I have been trying to get my A1c below 6.5, and I often got really frustrated that I couldn’t do it. I’ve given up now. In my over 18 years of diabetes I’ve only ever had a handful of A1c’s that low, and all of them were accompanied by way too many lows. I’ve decided that unless I get a CGMS there is no way I can get an A1c that low without having daily lows, which isn’t good because then I stop being able to feel them. If you have had A1c’s under 6 for the past ten years then I’d say you are doing fantastic!

13

The only time I fit into the diabetes “perfect catergory” is when I am dreaming.

14

Hi Cat!

Gee, I hope that wasn’t me that made you feel bad but sounds like it might have been …I know I was complaining on my Starbucks blog about my “high” numbers - which I realize are not high to many others on here and I know that. So if it was reading my numbers that made you feel bad I am so sorry! :frowning:

If I was one of the ones, please keep in mind that I am not a Type 1 but a 2 and I know you Type 1’s can have an awful time with your numbers - I greatly sympathize with you. I am grateful to have good numbers. Another thing is I have a pretty restrictive vegan diet and that is my ethical personal choice to stay that way (D or not). I also have always eaten “like a bird” and already on the healthier side Plus, I am rarely really hungry, my stomach fills up fast so I don’t eat as much as normal people. I used to only eat two meals a day and dinner was my big carb pig out (can’t do that anymore). I have always been skinny so I don’t require as many calories as most.

The above is probably the reason why I can keep my numbers so low. When I found out I had D, I was scared to eat ANY carbs or sugars - I don’t eat pasta or potatoes and other white foods liket that anymore and that was pretty much all I used to eat (bad huh?) - so with that stuff gone, my carbs are pretty low and I live on alot of veggies and low carb veg meats etc. I lost 20 pounds without trying in these first two months (and I don’t want to lose anymore - I think I am skinny enough!).

Plus I am a perfectionist and a worry wart so when I know I have to do something right I kinda of go overboard more than the average person - so I hope that I am not making people feel bad by comparing themselves to me and my numbers because believe me, I am a freak! :slight_smile: I have too much willpower in a way. I am new too (only two months) so I am probably spending more time trying and be anal about this than some others. I am sure I will slip up some days and mess up when I have that Frap! :slight_smile:

Another is too that I don’t do much right now so I am mostly not stressed out or require much energy so I can be all relaxed with in control numbers - I am sure when I start working again and running around like a crazy person I will have some problems.

If it makes you feel any better, I have an A1C of 9.2 and my FBG was 205 - I can just imagine how high my numbers were BEFORE I was diagnosed and put on meds - I am sure in the 300’s. I had a 246 my first day on meds when I ate some oatmeal. :slight_smile:

15

ugh I would be like you and not the ones who have never had any highs or lows and keeping it at a good number all the time? That would be a no too! My A1C is at 8.2 which I think is good concedering I have brought it down for the last frw times from 9.4. My bs run wild alot of the time! Well after having it for 35 years what do you want? DON’T FEEL BAB YOUR DOING GOOD!!!

16

It’s hard not to compare my number with other people’s numbers even though I usually come out on the short end when I do! And hearing someone freak out about a 12 point difference between readings just drives me nuts - especially considering that with the accuracy of meters there can be a 12 point difference with only one MINUTE between readings.

That’s why, when I see a post giving numbers I tend to tune out. If someone is telling me about their low A1C’s for x number of years, I don’t need to hear about it unless they’re also telling me HOW they did it. I’m skeptical about claims of keeping a range between 90 and 120 or 140, for instance, but I’m not going to challenge anyone who makes that claim or ask them to prove it. it’s not my business.

As was said earlier, the only real comparison is with myself. Nobody else’s numbers count for me. Even if I do exactly what they do, my numbers will be different. Comparing my numbers to others is they way to frustration and madness because a) I can’t control their numbers and b) I can only assume that they’re telling the truth (people have selective memories).

So, I have my diabetic ideal - A1C at 6.5 or less. BG’s between 80 and 140. These are goals I shoot for, like a golfer trying to scratch on a championship course. I’m not there yet, far from it, but I’m getting there a little at a time.

Right now the best tool I have is my CGM. I know what to eat, I know how to exercise, I know how to dose my insulin. It’s a great visual aid because it makes my BG less of a moving target. I see results immediately and can make adjustments faster. I wish every diabetic could have one.

Anyway, jealousy, envy, rage, discomfort or distrust over other people’s numbers is a thing of the past for me. It’s me against yesterday’s numbers. That’s it.

Good luck!

Terry

17

Danny,
I am so glad you said ot stay away from Bernstein, because that reassures me that I am not wierd. I haven’t read his book because he says not more than 40g carbs/DAY, at least that is what some have said here. If I cannot have a banana, I am not going to go on that diet. You know, if you eat a banana, that leaves 10g carbs for the rest of the day. If I cannot eat my morning oatmeal (1/3 cup dry), then I won’t consider it. Perhaps oats are horse food, but my type 1 body seems to like oatmeal.

What’s a girl to do??? = )

18

Dr. Bernstein recommends 30 carbs a day:) Six for breakfast & 12 carbs for lunch & dinner. I’ve followed this for a little over 1.5 years & it’s helped me tremendously, but it’s not for everyone.

19

Cat,
Be happy under 6.5. In fact, they say they want you below 6 if you (not you specifically) get pregnant, so I guess below 6 could be considered ideal, but if you go too low, you will start having lows. Do what works for you. Sounds to me like you are doing great. 10 years below 7. You rock, my dear. I also have to remind myself when I pose a question here, some of the responses will be from older male type 2’s. They don’t take insulin and they don’t have the menses issues. I wake up one day and my bg is like 220. Then next night I take more long term insulin, then when it starts, I drop the long term insuiln back down. No man has to deal with that. If I were really good, I would count the days, but my A1c is in the 6’s, so it is good enough for me. I just hope I can figure out insulin dosing when menopause hits. I am really absent minded. Life is hard enough without my killing myself for not being perfect.

About a year before my mother died at 58, she was really sick, waiting for a liver transplant. Her autoimmune disease caused cirrhosis of the liver. She asked if she could stay with me for a few weeks, because I live close to the transplant center. She never moved out! Of course I wasn’t happy, but she needed me, and I made the decision that I would live my life so that if she died waiting or died on the table, or died from complications, I could live with myself. I realized after she died that someone else might have been able to take care of her better, but I did the best I could with everything going on in my life at the time.

Ok, so the point is, my best is different from your best is different from anyone else’s. And if you need a laugh, go to youtube and watch the 4 or 5 “My Life as a Pin Cushion” videos. They always lift my spirits.

20

For type 1 diabetics it is impossible to reach 90-140 all the time. It is impossible because we are human beings and we will make mistakes for sure. If a type 1 diabetic has these numbers all the time he very likely has residual beta cells or he was been misdiagnosed and is in fact type 2. In both cases the remaining capability to produce insulin acts as a buffer. If they go low the production goes down and compensates the low. If they go high the produced insulin completes the injected insulin to catch the high early. As a result you will see picture perfect numbers.

Furthermore the good numbers are often just claimed because the test frequency is just too low to prove that they are between 90-140 all the time. My numbers would look much better for example if I would skip the post meal tests at the 1 or 2 hour mark.

Congratulations on your great A1c.