Not smart enough to have diabetes?

Type 1 and LADA
21

i just recently moved to an endo. he’s ‘the best’ in the city…lol i already half-fired him! he won’t be treating my other conditions, but since he’s ‘the best’ i have kept him as my diabetes doc. my only beef with him around my D is that he isn’t moving fast enough. i finally, last thursday, let the CDE know that i needed to come in once a week until i was in better control and was comfortable with it all. he had me scheduled for every 6 weeks.

so, not the greatest relationship, but for now i am trusting that he IS the one to get me on track.

i REALLY wish that doctors would make recommendations like books, online resources, groups…this place right here has taken my diabetes fear away.

22

Hi boedica; In type one diabetes You are your own science experiment; Go to your public library or order low-cost used copies of Think like a Pancreas and Using Insulin. Log, Log, Log, and take baby steps as recommended in the books. You cannot and will not learn everything at once ;you will get random, unpredictable numbers sometimes. Learn to accept them as part of the disease.
I am using an insulin pump and am STILL learning more about how to use it more effectively, after seven years. My doctor, who is very good to me, had not heard of any of the online resources for diabetes and did not recommend either of those two books. I ran across think like a pancreas in my public library and heard about Using insulin on this site… You said that you are “trusting that he IS the one to get me on track.” Boedica, I hope you realize You will have to do a lot on your own . That is just the nature of diabetes care. It is a chronic ocndition that must be self- managed. The doctors can give you the boat and the oars ( the prescriptions and background knowledge); but you have to paddle that canoe up the river (LOL)

Trust me, it gets better and less of a “hassle” with time, self-knowledge, and acceptance.

God Bless,
Brunetta

23

5 years for you? It has been 38 years and I’m still trying to figure it out. The key is “SELF MANAGEMENT”. I have been trying to manage D and on days I still don’t get it. Reading all the resources that our D friends have suggested is an excellent idea. You mention that you are logging. Good Start! Because that is not my favorite thing to do. But it is the best thing to do to check out any possible patterns.

You will find that after you read all the books you will come away with a little bit of knowledge from each of them.

An insulin pump has made a big change for me. But before I considered it I had to self teach myself on basal/bolus ratios and apply them to the best of my ability with MDI. That was fun!.

Also you mentioned that you wanted to visit the Dr. on a weekly basis. But he scheduled said 6 weeks. Perhaps he is trying to get you to develop a “SELF MANAGMENT” for yourself. Continue to log, read everything possible and if you run into a jam call the CDE.

24

Hello new friend!

I have had T2 for 10 years and never really took care of it. :frowning: I know, believe me I was in complete denial for most of the time I had it and since I got in my teenage years after just finishing middle school and getting ready to attend high school, I was rebellious which certainly did NOT help my denial. Don’t feel bad for not understanding it. Put it this way, I just found out what a CGM was today… :slight_smile: I need to learn so much more now that I want to take charge and have the support of a community of people just like me. The funny thing is that when I was doing the right thing thoroughly diet, exercise, oral and insulin, I saw a HUGE change and things were pretty much balanced for the most part. I guess I am quite lucky. I hope and pray that you get things figured out but I doubt it because this DM is pretty cooky. Lol. XOXO and good luck in your journey!

~T.

25

Jesus, their idea of helping you was to tell you that you “don’t fit in”?? Is there any way you can find a doctor who is familiar with managing T1D? Because if not, hoping and praying they check out this site isn’t going to be enough – if they’re not willing to at least read up on the topic enough to help a patient of five years, they’re not good enough to be your caregivers. In my humble opinion.

They’re probably right, though, that the T2 classes wouldn’t help, if the books I’ve seen on how to manage T2 are any indication.

26

Brunetta is totally correct. The doc is not the one who’s going to figure it out - he doesn’t have to live with it every day. YOU are. But I’ll tell you something - if everyone else here can do it, so can you. It just takes some determination.

27

well, i sat with the CDE today…and we have it down. i just need to keep doing what i’m doing. logging, monitoring.

i think my biggest problem for the last 5 years was paralyzing fear. of lows. of kidney disease. of amputations. i was just funning on fear. i would correct too soon, go low, and over correct the low. it was a vicious circle.

i’ve got a bit of understanding under my belt and i feel ready. i realize ■■■■ happens, and the d will throw me curves, but each and every day isn’t going to be like that anymore.

she sent me home with pump brochures and dummies. i’ll read up, and wear the dummies, and decide which one i want to try!

28

Boedica,Congratulations… You are making great steps towards taking care of yourself and beating down the "fear’ beast!! The less fear you have, the further you can go towards living the full, happy life you deserve…

God Bless,
Brunetta

29

Boedica, I don’t think it has anything to do with intelligence, I think it has to do with the disease. Diabetes changes from day to day, person to person. Maybe it’s time for a refresher course in diabetes with a CDE and nutritionist. Just to review and go over what’s been happening with you. Your doc to might be a person who needs to be talked to about the hi and lo of things…and why this is still going on…and chances might be that this is just you…it’s the way your body operates. You are smarter now than you were five years ago, you have more experience, but with time comes familarity and maybe that’s what’s happening, you are too familar with your “D”…and need a new outlook on it?

30

The basic problem with this testing regimen is that we usually try to assess and adjust at least two separate variables with one set of results. These results are also made muddier by variations in food, activity, stress, health, blah, blah, blah. I now refuse to show my daily “compliance” tests to my doctors or to make rate adjustments based on them. I use them to identify problems, but I perform much more focussed testing for specific problem areas.

Basal rates for example cannot be accurately set with compliance tests. Well they actually can, but it’s very difficult. The best way is to first understand what they are. They a insulin dosages designed to keep your BGs flat WITHOUT the influence of food. Ideally you should be able to skip any meal and stay level. We all know it’s not that easy. Those of us on pumps that have worked at it have come pretty darned close. I have no hesitation skipping or delaying meals.

MDI is difficult to both test and adjust for. Here’s a very good discussion on it. http://www.diabetesdaily.com/forum/articles/16675-basal-testing-mul… I recommend trying to build a 24hr profile of your BGs without food. Do longish basal tests – skip food and test hourly – and link them all together. if your last morning BG at noon was 10 mmol/l (180 mg/dl) and your starting afternoon test performed a week later was say 12 mmol/l (216 mg/dl), adjust all your afternoon numbers down by 2.0(36). When you complete a 24hr graph, you can then see humps and valleys you can attack with insulin adjustments, other insulins, or food. For example, you could wake up at 4am every day and shoot a few units of rapid. I know it’s tough, but if I ever have to give up my pump, I’m getting up at 5am daily to do just that. It will also identify risky times. Such an exercise is not as accurate as pumping adjustments where we can modify rates immediately and retest easily.

If you can nail down your basal rates, figuring out your bolus rates becomes almost trivial. Eat the same meal every day and titrate your rates. Then test these rates with varying meals.

My A1C is now 5.9% and I have very few hypos. I’ve had two “major” hypos this year where I was more than just a little shaky. For me one a month is great.

31

If there is nothing else I’ve gotten off this site (and I am new, like been on here 2 days now) it’s how no one has perfect diabetes. Everything affects the mix; heat/cold, healthy/sick, your body responds differently to each type of exercise, stress/calm and so on. Then you throw in age, gender and family genes and it’s a pretty crazy mix. Since I have been on the pump ( 3years) things have gotten better but everyday is a new day and some go better than others. You’ll always be tweaking, adjusting and learning. The pump is just another tool for you to help figure this all out. It’s pretty tough at times but you just keep going because the alternative is to be really sick and miserable. So take your pick today; work towards feeling better or not bother and feel aweful. I’ve done it both ways and the first is usually the better. :0) L

32

Don’t you just love how people you don’t know dish out advice. :0)

33

Sounds like me it is a challenge every day to get my blood sugars on an even keel, the victoza helped in the beginning and i have lost half a stone but getting 7 or below on a regular basis is out of my reach still if you do not keep at it the dangers are very real

34

Yes, diabetes has WAY too many variables!

That may make all of us feel dumb on occasion, but diabetes has a tricky way of making us all much smarter–about nutrition, our bodies, compassion for people who face daily challenges.

As I always say, people living with diabetes are smarter, more flexible, more courageous, more kind, and certainly more attractive than the rest of the population :slight_smile: If you don’t believe that yet, just keep having discussions on tudiabetes and you’ll see.

Here are some variables that have helped me tighten control in the past few years:
• Not overtreating lows. Thus, avoiding vicious cycle of treating, rebound, correction, low. Old insulins often required full-blown snacks. Nowadays, unless you have variable such as insulin overdose, not eating, or lots of physical activity in front of a low, simple glucose and possibly not all that much should be enough to treat it. But figuring out what works for your body is key. For me waking up low, as little as 4 g (1 glucose tablet) can lift me 20 points. Later in the day, I need more to get a 20 point increase.
• Working hard to fine-tune basal and bolus rates. I hate math. I soooo want an easy insulin-to-carb ratio, like something divisible by 10. But nooooooo. I’m 1:8 in the morning and 1:12 the rest of the day. For years, I tried to use 1:15 and it just didn’t work. But boy was I stubborn about that.
• Physical activity. It just works. Is it hard to figure out how to dose for exercise? Yes. Do I get frustrated when I want to exercise to burn calories but have to ingest a few to fuel the activity? Yes. Does exercise have long-lasting good effects on my blood sugars (not to mention my blood pressure, cholesterol, and weight management)? Yes. Do I still hate it? Yes. As long as I get moving more days than not, I am proud of myself.
• Making diabetes friends. Other points of view and experiences are invaluable when it comes to the never-ending process of figuring out our own individual science experiments with diabetes. Thanks, all, for your advice, counsel, wisdom, and humor. Especially the humor.
• Snarky diabetes slogan t-shirts and my “I’m tired of diabetes” bracelet. Live it loud, live it proud.

35

I hear you on the roller coasters-- they are so frustrating. Sucks.
One thing that helps me avoid roller coasters is actually reducing the amount of insulin I take all day-- like reducing ALL my basal rates a little. Even though it seems counter-intuitive because you have spikes, it has worked for me, I guess because sometimes the spikes are the result of rebounding from a low, like the above posters mentioned. Overall, the less insulin I take, the flatter my bg’s are… although I rarely have a day in which ALL of them are in range. But you know what I mean.
BTW, the pump is AWESOME (just my opinion) and I think that will help too.

36

I remember when I was younger before I started counting carbs, my parents would accuse me of “cheating” somehow. We didn’t realize that carbs were things like pasta and bread but always assumed it was treats, cake, etc. Has anyone else had that happen to them from family or friends?

37

Katie: You are SO RIGHT about lowering the basals, just a little to get more even numbers. I slightly lowered my basals a week or so ago ( always have to do this when I am out on summer break from my job from the public schools: Higher temperatures, less stress, and more exercise are also a factor in needing less insulin.) I also stopped the over-correction cycle. I have been in range more often than not. The Pumping Insulin Book has been so valuable in my quest for a “flatter” blood glucose profile, without the surges and drops…Diabetes management is always a lifetime learning process. As I mentioned before, a random low or a high is to be expected… Just jeep on going boedica

God Bless,
Brunetta

38

Believe it or not I don’t think I know what a CGM is either. I’m pretty behind in this computer age and everything is written as just intials instead of words. The first time I was on MSN, my friend wrote brb and I didn’t have a clue. I think I responded with lol? Just to type something back to him! So fill me in what is CMG? My guess is continuis montinoring glucometer? I can’t find spell check on this either!!! lol Lisa

39

Get those books Terry and others recommended on the first page of comments. Get Pumping Insulin, though, if you are going to be on teh pump, Using Insuilin if you are not.

One thing that makes Diabetes overwhelming is that doctors tend to tell us that we need to be perfect. They don’t say “strive for perfect control, but do your best”. The best for you will not be the best for me. It is frustrating that you don’t get all of the info you need from the doctors, and no matter how good you are, they are never happy, and that makes us crazy and OCD (Obsessive Compusive Diabetics - yes, I made that up). We make ourselves crazy, and set unrealistic goals for ourselves.

Think Like a Pancreas by Gary Scheiner changed my life after 25 years with D. So many good odds and ends of specifics. He tells you perfection is impossible, just do the best you can, and gives steps to get better control. Work one step at a time. Like one step a week, or if you don’t have it down, take 2 or 3 weeks for that step.

I went from an A1c in the mid 7’s with waking a couple of nights a week with lows, and a seizure when I was sleeping every couple of months to an A1c of 6.5-6.8 without any seizures for over a year. I had never had a doctor talk to me about IOB (insulin on board - the stuff that hasn’t been used up yet), and figuring that in your calculation before you correct. They talked about I:C, the insuin to carb ratio, but the math seemed exhausting, and I am an engineer.

40

Before we were given instruction on counting carbs, it would baffle me why certain meals would consistently cause David to run low, while others would consistently cause him to run high. The “light” went on when we were introduced to carb counting.

David received his pump and training March break the year he’d turned 14 and is now 17. For a growing teen, the pump was a godsend. David has problems with a rising BG between 3 a.m. and 7 a.m. that we were not able to properly to address with Levemir (similar to Lantus) even with a split a.m. and p.m. dose. This problem has been resolved with the varied basal settings allowed by his pump.

The bolus wizard on David’s pump has made managing his own boluses and food intake something that David can do and does do by himself. He has 3 different insulin to carb ratios programmed depending upon the time of day that he eats. He is not very mathematically inclined, so counting carbs he is perfecting, while letting his pump work through the appropriate ratio’s and BG info to calculate his rapid acting insulin dose. Pre pump, I used to list the carbs for each item in his lunch box on a sheet of note paper, with the insulin to carb ratio, +/- adjustment factors for high or low BG’s and a small pocket calculator so that he could re-caculate if he decided that he might not eat everything that was packed. It was insanity sending a kid to school that way.

Three things have worked together for David to get his A1c below 7.

Testing. He tests on average 10 x a day. If a site fails, David can get up in the morning with a reading of 4.8 (86) and have his BG rise to 20 (360) in as short a time as 60 minutes, so regular testing has allowed him to catch and correct problems like this quickly.

Tightened up his pump target settings. Initially the target settings recommended by his CDE were very broad, which means that whenever he would bolus to eat, the wizard was working toward a very broad target range. We tightened the day time target (7 a.m. to 6 p.m.) to a range of 4.0 to 5.0 (72 to 90). Now everytime his bolus wizard calculates a food bolus, based on carbs, taking into account current BG, it aims to bring him into a range of 4.0 to 5.0. For night time (6 p.m. to 7 a.m.), we loosened the setting to a range of 5.0 to 5.5 (90 to 99) so that an evening snack will not aim to bring him quite as low as a day time snack.

The third thing, not necessary for people who don’t have unpredictable overnight BG’s from the after effect of competitive sports is that I started to do BG checks every night at 3 a.m. I chose 3 a.m. as this is the time of night that his basal is set to automatically bump up in dosage and I don’t want to worry about it doing that, if he happens to be heading low. So now when I check, I also correct BG’s that are too high. A couple of times each week, no correction is needed and I just go back to bed. About once a week his BG has dropped below 4 (72). I will wake him to drink a juice for any BG below 3.5 (63). The other 3 to 4 nights a week, his BG is rising and I will bolus for any BG that is higher than 8 (144). The impact of correcting a rising BG has been huge for David. He now gets out of bed in the morning for school feeling really great, whereas a rising BG in the past would have made it difficult for us to get him out of bed at all in the morning and he would be grouchy and feel crappy for the first half of the day.

It has taken a while and trial and error to get to this point, but his last A1c was 6.4, 3 months earlier 6.7 and three months before that 7.1. Oh and of course, it has really helped that he has grown only about 1/2 an inch over the last six months versus 12 inches plus of height that he gained, post pump. He started off as a 14 year old just under 5 feet tall and is now pushing 6 foot two. As an individual who is extremely active, David is a huge consumer of carbs. Over the last 14 days, our carelink site shows that he averaged 270 carbs per day, with the low being 165 and the high being 420. Way, way too many carbs for the average person, but he is burning carbs like crazy. The carelink reports also show us that he averaged 60 units of insulin daily, 50% basal and 50% bolus.

The information that the pump program gives us by doing a weekly download, is amazing and well beyond the detail of one’s simple daily log. We still keep a simple daily log, endo requirement.

Cheryl