Out of control

1

I just recently switched endos and pumps. I feel like for the first time in my life I’m actually giving my diabetes care my all. I am 27 years old, and I’ve had diabetes for almost 26 years now. The least I can say is that “diabetes sucks,” but I really don’t know any other way of life so who am I to complain. Hey, a girl can dream, right? I have never gotten my A1C below an 8 and at the moment, that’s my main goal. I’m sick of feeling like crap (physically and mentaly) and feeling guilty that I’m slowly killing myself. In addition, every time the thought of having a baby (I’m married 5 years now) crosses my mind I feel even more guilty and cry like a crazy person. In fact, I’m secretly considering adoption so that I don’t pass this along to my helpless baby. I’m a third generation type 1 diabetic in my family… anyway, I am giving it my all this time- but, my sugars are still out of control. It’s like a constant roller coaster ride- for instance, last night I had soup for dinner and went to bed with a sugar of 138. At 2 am I woke up and was 58. When I checked at 7 am for breakfast, I was 318- obviously I over treated a bit much. Then, getting the 318 down to a normal 117 (just now at 3:30 pm) took all day. I barely ate because I don’t want to raise it any more. It seems no matter how much insulin I take, how many adjustments my endo makes, or how few carbs I eat, my sugar is above 250. My insulin to carb ratio is a 1:7 in the am and 1:9 in the pm- that’s a lot of insulin! Really, I’m at a loss- I have honestly, whole-heartedly had enough. I’ve been trying my best, but it’s draining me emotionally. All I think about are my numbers and carbs, and what I should try next. And then I look on this website, and there are people who can “flatline” or maintain a A1C of 6! How do you do it without seriously contemplating committing yourself? I don’t know that I can put any more effort into this- please tell me I’m not the only one.

Sorry for the ranting- I just needed to get this out of me.

2

Sorry Cara - - we have a lot of frustrating days with my DD too. I almost feel like some people have it easier than others, I don’t know.

I’ll just throw out a couple thoughts, they may or may not help you because everyone is different.

If you wake up with a high number, you will probably also be pretty resistant because you may have been stuck at that number for a few hours while sleeping. We usually do a correction PLUS a temporary basal. Temp basals work great for us, it’s almost like that small drip is absorbed better than a huge bolus.

You are getting a good amount of insulin with your carb ratios…do you think fat and protein affect you? The tag concept is great to read up on. There’s a group here on TuDiabetes.

I think adoption is a wonderful choice whether you are a T1 or not!!

3

Hi Cara,

I can appreciate your frustration. I have a question for you about your schedule. Do you maintain a fairly regular schedule regarding your eating? Such as, eating the same amounts of food for breakfast, lunch, dinner, and snacks, and eating those around the same time each day?

I used to eat various things at various times of the day, and my sugars bounced accordingly. Then I learned that as I gave myself an actual food schedule, that I could adjust my insulin injections, more precisely, based on that and it made worlds of difference for my control. I even have a timer on my phone that goes off at 3pm to remind me to have my protein/fat snack in the afternoon. Without that, I tend to go a bit too low before dinner time.

This doesn’t mean you have to eat exactly the same foods at the same time each day, but it can help to eat the same amounts of the same kinds of foods at the same time each day. For instance, 3 eggs and 5 pieces of bacon for breakfast, or a few ounces of leftover steak and a side of avocado can equal each other out as both are protein and fat.

Also, start using glucose tabs ONLY to treat your hypos (unless you don’t have them available!). Do a study for yourself and learn exactly how many grams of glucose raise your glucose by X amount. I used to use fruit juice or candy to treat hypos, but always overindulged - anything to rid of that shaky feeling. I always had to do a correction later. Now, I know that 4 grams of glucose tabs raise my glucose by 20 mg/dl, so I “dose” accordingly and no longer overshoot.

Just some food for thought! Best of luck.

4

Hi Cara

Congrats on “starting again” with your diabetes care. I was much older when diagnosed and can only imagine what it is like to have dealt with this your whole life. I can definitely understand getting burned out and then recommiting yourself. A new pump and a new endo sounds like a good new beginning!

The most important thing I want to say to you is to not compare yourself to others! You know how it is when you look and see all the girls who are “prettier” or “thinner” or have nicer clothes, but you don’t see those who are less so, and you don’t know what those pretty girls feel like on the inside. When I see the term flatline all I can think is that word means dead…lol. Seriously, with diabetes care what I think is this: Sure, if we work harder on our control, our results will show it, and if we neglect our diabetes, that will show up in the numbers too! But beyond all that I really do believe it is “the luck of the draw”. By that I mean there is something nobody has identified whether it is genetic or whatever, that gave some of us fairly easy to control blood sugar and others are always struggling. I believe that because there are many people that post enough on here that you know they are working hard on their diabetes management. But some of them seem to effortlessly stay between 80 and 105 (WTF??) and others roller coaster between 40 and 400 for no discernable reason. Then most of us are somewhere in between. And it’s nobody’s fault. Also, some of us make decisions about the quality of life where we choose other things above perfect blood sugar. For me for example, I’m a vegetarian and a foodie and those things are important to me. I’ve made lots of changes in diet, but I will never eat truly low carb even though I know I’d have better numbers if I did. It’s a choice.

Also, please, please, please don’t feel guilty. Do your best and you have nothing to feel guilty about and it sounds like you are, like you said, giving your diabetes care your all today. If you’ve never had an A1C below 8, then getting below 8 (not someone else’s 6!) is a great goal.

So what practical things can you do? Ok, so you went to bed at 138 and woke up at 2AM and were 58; that’s obviously too much of a drop. If that was a one time thing, I wouldn’t worry about it, if it happens all the time than you are taking too much basal for that time period. Do you have your basal set to different rates for different times? Our needs definitely vary. If you often go too low around 2AM, then you might want to lower your basal for the period around 11PM. Ok, so you “over-treated” and got back up to 318. But you know why it happened so you can change your treatment of lows. For me, as an average sized woman, if I was 58, I would only take 2 glucose tablets to get me back in range. If you use “goodies” for raising lows and you feel super hungry when you are low, then you have trouble controlling your eating. So switch to glucose tabs and take them like medicine. “Two tablets for a low of 58”. Are your I:C ratios correct? There is no such thing as “too much” or “too little” insulin, but only the amount that works for your. If you need more to keep your numbers in target range, then you do. I suggest bolusing 15-20 minutes before eating to let the insulin work. Do you eat a large number of carbs? It can be hard to accurately bolus for large amounts of carbs, and you might also be developing some insulin resistance. Reduce your carbs as much as you can and you will not only use less insulin, but find your dosing more accurate.

Finally, yes, it is emotionally draining to “think about nothing but numbers and carbs”. Give yourself a break. Sure, work on your diabetes, but then let go. If you have a high number, don’t beat up on yourself, but see if there is something you can learn from it and move on. And, please do the things you love OTHER than fretting about diabetes. Go out, have fun, laugh with your husband or your girlfriends, buy something new. Life is meant to be more than just struggle.

5

It is very difficult to manage Type 1 D. I believe it may be easier – at least easier for a longer period of time – to manage LADA, which a lot of the adults on this board have. I notice a lot on this board also utilize an extremely low carb diet, which may be another reason. For those who can’t or won’t go very low carb (we won’t as we have a growing child, and I’m not sure if she will go low carb as an adult), you can still improve control. Basal test all time periods to get your fasting basals. If you can’t do this, do low fat, no carb meals for the basal time period in question (such as chicken and salad). Once you have an idea what your basals are (yes, I know these change weekly or every few days at times, but you need a general idea), test your insulin to carb ratios. Probably more insulin will be needed to cover breakfast. Omit cereals and foods that are extremely spikey from your diet as much as possible. You mentioned that 1 to 9 ICR is a lot of insulin. I believe 1 to 10 is the adult norm for a lot of Type 1s. Our teen uses 1 to 7. You need what you need. When testing ICRs, eat a healthy, low fat meal, and limit carbs to 60 grams max. Once basals and ICRs for all time periods are set, test your sensitivity (easy to do at night after all insu7lin and food has left your system). Correct high BS and see if your sensitivity settings are correct. Bear in mind your sensitivity changes throughout the day. Overnight probably more sensitive until 4am or so through 9 or 10 am when you may be resistant to insulin (cortisol secreted; Dawn Phenom). Can be somewhat resistant six pm through midnight as well. She reacts differently to all sorts of food and food combinations. After a year or so, though experimentation, you will find some known foods and food combos that work well. We substitute Quinoa pasta in the turquise box from Quinoa corp for pasta; this eliminated her pasta spike. Lots of fat interferes with absorption of insulin. We test two hours after every meal if home in order to lower postprandial spikes. Insulin does not cover food well, certainly not all food. By testing two hours postprandial, you can correct if she is too high at the two hour mark and give carbs to cover if there is too much insulin on board. We switched to Apidra because it is a faster insulin. We have Dexcom, which she will only wear sometimes. I would urge you to use cgms technology to get a handle on all of the above. You will get accurate information from which to make these changes. If you can, I would wear Dexcom all the time. You will certainly be able to lower your A1c and have much better control with Dexcom. I am biased toward the Dex as I know it is the least painful, more comfortable version of the two cgms on the market. But by testing before breakfast, two hours postprandial, at midnight and 2am, charting and analyzing your numbers, basal testing, testing your carb ratios, sensitivity, etc. I think you can certainly improve. I know you can. Don’t be discouraged. It is a lot of work which is why it would be good if you could let the Dexcom help with this. P.S. Your endo can prescribe the I-Pro a few times a year as well if you can’t get Dex. It is a blind cgms, but the endo can then help you with the information provided. Good luck.

6

I agree w/ the suggestion not to compare your numbers/ratios/ results to other people’s. I would look closely @ basals if the i/c isn’t covering the food, maybe the basal isn’t quite where it’s supposed to be? Also, even though 9 and 7 seem like a lot of insulin, if they don’t work, maybe a shade more will get it there? I was using 6 for a while and got ok results but I also felt sort of freakish compared to the “tweens” and “teens” who seem to be a lot of folks? I have cut back a shade to try and drop a bit more weight but it was really easy to avoid highs with 6? If a number will work for you, it’s the number that you should try to use?

I am sort of nuts about staying on top of it but, even when I blow it off, it’s still there so I figure I might as well keep fiddling around with stuff?

7

I am also sceptical about the basal settings. @Cara: do you ever had a basal setting that kept you in range for 24 hours without eating any carbs?

8

I also vote for a basal setting problem. Like Holger asked, have you done basal testing? Some people do it in 8 hour shifts, but I always do it in 24 hour shifts so I know it works right. Think of your basal rates like the foundation to your house. You can have a nice well constructed house, but if you put it on a crummy foundation, it is going to come crashing down.

A good book to get is Pumping Insulin by John Walsh. It will give you a lot of tips on adjusting your pump settings to get the most out of your pump.

What kind of insulin do you use? Sometimes changing to a different insulin also helps when you are having problems.

When you saw the flatlines, did you also notice there is a flatliners group but there is also a rollercoaster thread? Even people who strive for flatlines have rollercoaster days!

You have come to the right place – you will find more help here than you ever did from doctors.

9

Have you read Pumping Insulin? There’s a lot of good formulas in there to use as a baseline for setting correction factors, ISF, etc.

10

Ok, seriously I feel like you stole my story…lol…seriously the only difference I have only been T1 for 5 years i am the only T1 in my fam and I’m not married other than that everything is the same. I am going to a new doctor tomorrow and I am hoping to a different outcome because my goal is to get my A1c under 8 for once. I feel like diabetes is playing a trick on me sometimes making me feel like I’m going crazy. Its soo frustrating… If this new doctor actually puts me on a different plan that helps I will let you know…

11

Thank you all for your suggestions- here are a few answers/reactions to your posts

1- I’m going to only use glucose tablets for now on… I am really going to try with this- no more sweet foods that I’m never satisfied with.
2- I’m going to the endo tomorrow. I’m going to ask him about doing some basal tests. I’m not really sure what to do to test them, and I’m sure help be able to help me.
3- I do notice that certain foods spike my sugars higher, but since I’ve started over, I’ve been soooo good… I mean, greek yogurt and coffee with fat free half and half shouldn’t make my sugar spike so much- it’s not like i’m having a bagel.
4- I’m going to play around with temp basal rates, too-

There’s so much to consider… I just with things were easier for us.

Cara

12

“Pumping Insulin” is a good idea! Pretty much an owner’s manual sort of arrangement and may give you clearer directions about basal testing than your doctor, plus it’s a book that you can have on hand as you need it.

Coffee is wierd, because it’s a morning thing. I think that even when I have beaten dawn phenomenon it’s still lurking there and if you miss a few carbs, even 5-10, that aren’t covered by insulin, it can make your bg spike like that? Or maybe it’s the half and half but morning was like 1/2 the battle for me. The other thing that I do, largely because I am crazy busy at work all the time, is just eat the same thing every day for breakfast and lunch. It’d be fun to “do lunch” but it can really get in the way of control and having a “benchmark” food regularly seems to help with making adjustments or perceiving changes. Even if you don’t do it permanently, a week of stable, constant food can show you pretty clearly where there’s potential to gain from adjustments and it might help? I use temp basals to fix mistakes a lot too but I am not sure that’s the best habit to get into as it makes it hard to know what’s set correctly and what isn’t? It sounds like you have a great plan though so I hope that it works out for you and that your doctor helps you put things into action!

13

Thanks! I’m going to check out that book!

I do eat the same thing every breakfast and lunch- mostly because I like yogurt in the am and a sandwich and apple for lunch every day… so i’m pretty consistent with that. I’m a teacher, so eating lunch is pretty much shoveling food down in a 25 minute lunch period- no time for going out to lunch!

What’s the deal with coffee anyway? I was never affected by it, but it seems that all of the sudden I’m more sensative to it- why/how does it raise bg? I consider the 6 grams of carbs from the half and half when bolusing, but that’s it… it doesn’t seem to affect me during other times of the day. weird.

14

It might just be circumstantial, like the coffee is there but it’s DP actually hitting you?

Another thing might be that 27 is some sort of metabolic watershed and your body is changing (I’d say “getting old” but, since I’m 43, I don’t want to go there!) and needs a different amount of insulin for no reason other than that you need a different amount of insulin? Since I started pumping and more precisely CGMing, I think I notice changes in patterns occasionally that require some adjustment that likely would have been harder to notice with MDI/ occasional BG testing?

15

Some days it is exhausting to think about. And the perpetual story problem gets old. (That’s always my best way to describe having diabetes, you are always doing math, but not the 2+2 kind, more the 2+2 - 30 minutes of exercise, which means the bolus from 1 1/2 hours ago’s meal is going to be more active than normal. … blah blah)

I have a friend who goes to bed every night without any dirty laundry, not in the machine or the dryer, and the clean laundry is put away. As intriguing as that is to me, to not have to deal with the piles, I know that is not a realistic event for my personality. My point - don’t be worrying about those flatliners! Maybe when you get your A1C under 7 you can start thinking about that, if that interests you.

Do you have dawn phenomenon?

My gut is telling me your basal settings might not be right. Of course, depending on what caused your spike this AM, sometimes when I have a high number like that, it takes 5-6 hours to come down.

I hope your new endo is good. I was blessed with a wonderful endo upon my diagnosis, he had an educator in his office, and he was very precise with my initial instructions on what to do, how to treat, how to spot patterns and make adjustments. He has since retired and I have discovered not all endos are equal. I have been shocked to see the different styles out there.

Maybe take a few days of following the same schedule as far as food and exercise, throw in some 2 hour post meal tests, and after the 3 days, sit down and look at all the information when you are in a problem solving mood. If you see a pattern in those 3 days, you can make adjustments.

16

I also have issues with coffee in the morning and late morning and have to bolus to cover the caffeine spikes as well. I don’t have to do this in the afternoon or evening if I have it. I have found many people telling the same stories about coffee spikes.

17

what do you mean DP actually hitting me? This never used to be the case with coffee, so maybe you’re right- my body could be changing!

I just ordered Pumping Insulin from Amazon- thanks !

18

Thanks Kcf- my endo is great. I just started seeing him in November of last year, so we’re still working things out. He too has an educator in his office, and I’ve been working with her as well. What is dawn phenomenon?

:slight_smile: Cara

19

If you wake up and are at say 90, take a shower and have coffee and get to work and are at 120, you might think that it was the coffee’s fault however I notice, at least w/ the CGM, that my BG will rise on it’s own in the AM. I “cover” disconnecting my pump for the shower w/ .3U (/ my basal of .9U/ hour…) that seems to help push it in the other direction. This gets deducted (as insulin “on board”…) from the AM bolus but is sort of a boost in the right direction at that critical time?

20

27 years old, been diabetic since you were 1. You relied on others to take care of you and if they don’t have diabetes they can only do what they are told by the doctors and let’s be honest, they don’t know it all. There are many variables with diabetes that the doctors I have seen don’t factor in. So now you are an adult and you can find out more for yourself ways to control. The one thing I always say which is super important is staying hydrated with clear-nothing-added-water. Being dehydrated makes BG rise. Even things like diet drinks can dehydrate you.

Not sure about your diet and exercise but that is always a great place to start. Cut back on simple carbs and packaged foods. Stick to mother natures kitchen, lean meats, veggies, fruits (if you can eat them).

Just keep trying, ask questions, research.