Everything right doesn’t work

Im 16 and was diagnosed 3 years ago. I seem to be doing everything right and yet I sit here with my blood sugar at 400. It makes me mad. I’m just at this point where I’m so busy and have so many stressors in my life that every tiny little diabetes things, just makes me more frustrated than I should be. Like when my dexcom just goes off I’m just already done with it. I feel it’d just be so much more bearable if when I did things right, that it actually worked. Because I am on top of it so I don’t know how to fix it if I’m seemingly not doing anything wrong.

Hi Tommy @tsanders2002, I agree that one of the worst things we encounter is just when we think we have this diabetes managed well and our numbers should be great, that we look at our CGM receiver and see that 400+++++. Makes me want to scream and then my wife [we’ve been married 53 years] tells me to relax, accept that something went wrong and just move forward.

I’m giving you that same advice with a little added. Keep in mind that diabetes is a hard to achieve balancing act between food, activity and insulin and add in the only thing that is constant. The one constant is change. Yes, the human body is always changing and that includes how our bodies react to the foods we eat and how much insulin we need to counteract the carbohydrates [and fats and proteins too] in that food.

If you are anything like me, your “sensitivity” to insulin will change with change of season, as your body matures and a thousand other unknown factors. So where do you begin? Other than the fact that you are using a CGM you didn’t say much in this post about how you manage your diabetes; if you tell me more I can give more specific suggestions. Such as do you treat with MDI [multiple daily injections], a pump, one or two injections of long-lasting background insulin, etc.? One place to start is with carbohydrate counting and measuring foods for a while; I’ve found that my “portion sizes” get distorted after a while - I may be eating an additional 50% of potato which I missed counting.

I’m not a medical doctor, but over the last seven decades while I’ve been living with diabetes I managed with all sorts of methods and had many downfalls - but I will offer you suggestions that have worked for me and may help lift you.

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If it’s 400, then you’re either not doing something right or you missed something. Im 29, had T1 for half my life, and just when I think I have it all figured out, I learn something new. You’re never going to get insulin perfect, just close enough.

Dont let it ruin your day. Just try to figure out what is going wrong. Some number is off somewhere, focus on that instead.

@tsanders2002 hey Tommy, diabetes can be like balancing a bowling ball on the end of a pool cue. The instant you take your eye off it it cracks you in the head.

It’ll be a whole lot easier to talk about this if you gave a smidge if a hint as to what you were actually doing when you got that weird 400. The one where you went out for Chinese food will be different than the one where you drank the coke the waitress swore was diet, and different than the one where your infusion set occluded, etc.

I’ve been doing this for 40 years and my meter says my 90 max was 400 and my 90 day min was 41. SSDD. Do not despair. That 400 was just a bad indicator, it’s what you do after that counts.

You got T1. You are still alive. You are doing a good job.

would love to say it gets easier, it really does in a way after you have done it so long… but for the most part it is always something, there are no two days the same… maybe talk to the endo, or the cde and ask for some tips… something is deft up to have a bg of 400, and its either a miss count on carbs or either your body changing and needing more insulin and it needs to be adjusted… hang in there!!! its tough and never fun but you can do it and live a great life

Morning Tommy,

I’m ten years in and always learning. Today is a heat wave. MY T1D body is very temperature sensitive. If My body temperature rises so does my blood sugar. And no the insulin hasn’t gotten hot, old etc. If I get cold, think grocery store air conditioning, I drop. It took me awhile to figure this out.
Put thought to the patterns, also if you are in sports… stay very hydrated. My bs stays high when I don’t drink enough water.
Keep checking in here, Even though I don’t post a lot, there is many a lonely night fighting highs or lows staying awake to be safe when I log in and realize I’m not alone.
You are doing great! You care! You are reaching out!!!

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I’ve had T1 for 63 years, and what comes to mind about your problem is a strange effect I found I had in 1986. I had found that my bg levels were running high each summer for several years, with no hint of why.

Then I had a blood test taken at work, and was at 413, still with no idea why. I knew the test was scheduled for Monday morning, but back then my instructions for handling high bg (since we only had urine testing at the time) was to take normal insulin and diet, just drink a lot of water and exercise. Not at all useful at that time. Unfortunately I liked some flavor in my water, so I drank 2 2 liter bottles of diet soda over the weekend … and ended up at 413 Monday morning.

It took me a year and a half to figure out, but I am allergic to aspartame, that was the sweetener in my diet soda. So I stopped having anything with aspartame, and my bg was a lot more stable and consistent. As a test when they had a “picnic” at work (us sitting on the floor on blankets in the meeting room) they offered DIet Pepsi and other drinks. So I drank 2 cans of Diet Pepsi, and my bg went from 121 before the lunch, and 307 after. It stayed at EXACTLY 307 for 7 hours, tested once each hour, then slowly decreased. Only conclusion I could come to was that I’m allergic to aspartame.

It may be possible that you are allergic to something you eat or get near at times. Hard to verify, but try going on an “elimination diet” (also know as a purge) by restricting what you eat to vegetables only, or whatever kind of food you prefer to start with. Stay on that for at least 21 days, and see if your results improve markedly. If not, switch to a different kind of food as a base. Once you get stable readings you can add back other varieties of food until your readings start getting bad again. That will give you an idea of what KIND of food you are allergic to.

If it happens to be caused by something OTHER than food, perhaps in your house or somewhere else it gets more difficult, and beyond my experience. Be observant and maybe you can figure out something.

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Hi @tsanders2002. I’m sorry to hear about your frustrations but I do understand. Often when something goes wrong with me I can pinpoint something I did - or didn’t do. But since you’re sure you’re on the right track I’ll share something else I’ve found: I use a pump (for 20+ years of my 56 with diabetes) and sometimes for no apparent reason I need to change my settings - most often the basal rate: sometimes the body just starts needing more (or less) insulin than before. I always have to tweak in summer and winter, and occasionally in between as well. I imagine the bodies of people who don’t take insulin are the same, but they adjust automatically without the “owner” being aware, while we have to make the changes ourselves. So check with your doctor about your pump settings if you use one, or injection profiles if you take shots; as well as carb ratios - I’ve had to increase those occasionally too.
Keep us posted on how things progress.

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Happens to me, too. I have dealt with it this way — take into consideration the number you’re at before eating ( and cover it with your next dose of insulin — if it’s between 180 and 210 cover with 1 unit of Novolog, if between 241 and 300, 2units of Novolog… you get the idea. Then figure out as exactly as you can what you will eat, e.g. one slice of bread — one unit Novolog, banana 27 gm carb= 2 units Novolog — etc… then add it all together and shoot. Then keep track , say every hour to see how it affects your sugar. It is possible that you have gastroparesis – i.e. your food is digested slowly, and will hit a peak later — and THEN you sugar will zoom up. ( There are solutions, but lets not get sidetracked.)
Other areas to watch – are you exercising? Are you being stressed? Exercise can RAISE your sugar ( depends on the number you start with lol!) Stress will do it, even good, pleasurable stress. And of course, what you eat — some things will raise your sugar very quickly, others, very slowly. And unless you are measuring and counting meticulously ( which I do not --I think I KNOW – and its easy to make a mistake when you like what you’re eating lol!)
So my bottom line is this: you must be doing SOMETHING “wrong” — be honest with yourself. Highs may not be as scary as lows – at a given moment – but long range they can spell major trouble.
Good luck!!!
m

A teenager’s BGs are extra difficult to manage, so don’t be hard on yourself. When things consistently suck, go back to basics. Re-test your basal rates and carb ratio. And make sure you are pre-bolusing 15 or so minutes before the meal.

Listen to the Juicebox podcast, starting with episode 210 and the rest of the Pro Tip series. It will help you absorb some pretty great management information.