Introducing myself & having issues

Hi everyone, my name is Lauren and I’ve been diagnosed type 1 since 2014, just before my 24th birthday. I had a decently long honeymoon phase and started MDI maybe in 2016 I think? It’s hard for me to remember. Just this past July I started on a Tandem Tslim x2 pump after a lot of research and a roller coaster of highs and lows the months prior.

Overall my experience with the pump has been good, up until recently. I’ve struggled to keep my blood sugar down without correction boluses (because the times in the last few weeks that the pump has given them to me it’s been too much and I start to crash within an hour) after a meal except for lunch! The last two days I’ve gone low immediately after eating lunch and today I corrected (now it seems over corrected, again) and now here I am a few hours later sitting high.

I’ve been putting my pump in sleep mode when I notice I’m creeping towards 150 and it sometimes helps, but I think my Dexcom is off and when I go to calibrate it, it goes too high (I’d rather it read a little low so that it doesn’t accidentally give me a bolus I don’t need). On the other hand, overnight I notice that the pump tends to decrease my basal because I’ll go to bed around 130-120 and wake up at 105-95. I don’t take issue with it, but I have to wonder if tweaking is needed for other hours of the day and that’s why I seem to crash. Not only that, but normally (as in, before this last weird week) I can’t go take a walk or go shopping if I have insulin on board without my blood sugar starting to go down (and down and down).

I don’t know that this post has much of a point besides the fact that I just needed to vent to people who might be able to relate. I’m currently trying to flush out ketones from not eating enough and struggling with being afraid to eat too many carbs due to the lows I’ve had recently and taking too much insulin. I only know 1 other type 1 diabetic in real life and they’re a friend of a friend, so I don’t talk to them too often (and they’ve had diabetes much longer than I have and seems to be less anxious over these issues than I am - I have a panic disorder so having diabetes on top of it makes life hard sometimes)

Thanks for listening!

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Hi @xgoingdownx welcome to Type One Nation. Well, there are 25k registered users here (not all of them are active) so now you can’t say you don’t know anyone with T1!

all in all it’s pretty rare, I went 25+ years without meeting one, no one in high school, or college, just me. had a couple rare sightings “in the wild” one was at the airport, another was at a conference actually. showed a lady my Dexcom the other day… I think she was talking to another mom about her kid and was wondering about it so I showed it to her. now Im thinking I hope it wasn’t too weird… =)

if I learned anything in the 40+ years with T1… don’t chase the dragon. Dexcom is great and all, but it’s too slow. by the time I see an increase or decrease on my CGM it’s 15-30 minutes of old news. If I’m gong low and staring at that dumb trace, I’ve been going up for some time before Dexcom registers… and for me it always reads low. I try to never ever calibrate unless I am very steady for hours - my favorite time to calibrate is 1st thing in the morning.

if you got tslim in sleep mode, and then you want to walk, then you will have too much IOB and if you are suddenly active you’ll drop. if you use the modes put it in exercise mode and don’t do anything until you see dexcom start to rise (then you should be OK, because that was 15 minutes ago). I can’t really be active if I have eaten and taken insulin for “sitting around”. now if I am eating and bolus for less than half, I can be pretty active and not drop. I took the insulin for 20 grams carbs at lunch but ate over 50 grams, that allowed me to cut the grass and put all the summer furniture away and I still needed a gatorade… I should have taken insulin for 10 grams… all this knowlege you will get by sticking to it. If you want to be active you will have to learn, by trial and error, how to use insulin when you are active.

there’s nothing wrong with asking for a CDE or nutritionist (through your endo) to help you with the advanced stuff, like pumping and going from nothing-to-very active. there are strategies that can help!

anyway we are all glad you are here. welcome to the club.

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Thank you for the welcome! I try not to mess with my Dexcom too often, honestly. I’ve watched so many videos on it before switching from the Libre just so I could use it as properly as possible.

The idea of bolusing for so much less than I’m eating is honestly so worrying for me considering how stubborn my blood sugar can be to come down even when being active if I’ve accidentally eaten too much. I need to find the happy medium! (sometimes I’m able to cut a few carbs off my dosage but most of the time it’s needed, I’m still working out kinks) I know this has a lot to do with what kinds of foods are being eaten, I need to get help figuring all of that out as well.

I plan to contact my endocrinologist about all of this soon since I don’t see her until February and I do need some help. :sweat_smile:

Thank you again for your response!

Hi @xgoingdownx and welcome to the forum. It’s normal to have to tweak pump settings from time time: our needs change occasionally, and while the bodies of our friends without Type1 adjust automatically, we have to engage or brains and the mechanics of our devices. You may reach a point where you can adjust on your own but snce you’re new to pumping you should work closely with your endo to see what needs to be adjusted and when. I imagine you’re keeping good logs and those will help you find patterns.
Small changes can make a big difference. True story: when I got my first pump 25+ years ago I was excited at the prospect of being able to change my rates as needed. So when I started having some issues with lows, rather than working with my doctor I decided to decrease my basal rate - by a full unit. To say that was overdoing is an understatement - working with my endo I find that even a tenth of a unit helped more than I would have expected. So work with your doctor and don’t be surprised if they take small steps - maybe not as small as 1/10 of a unit as in my case but… It will take about 3 days for your body to adjust, so give it time. All the best to you!

Thank you! I made the mistake of making a change to my insulin without my doctor earlier in the summer before going on the pump and yeah I try not to do that anymore, it was a bad idea! I’m only on 0.9 units per hour right now and when we went to Disney back in October my doctor said to try 0.7u/h and I had that going on with exercise mode constantly (& then I had to change my Dexcom and it was off and giving me weird readings and screwed up our last day, but things happen).
I hope talking to my doctor will help my situation but I have a feeling she’ll just tell me to watch what’s going on and keep doing what I’m doing because everything has been all over the place instead of the same thing happening every time, you know? (which is what worries me, since it’s been a miserable few days around here)
Thank you for your reply :purple_heart:

Don’t forget, I’d your Dexcom gives your weird readings confirm them with a fingerstick and calibrate. Dexcom will replace them if they’re way off or you’re having issues - I just ordered a replacement recently myself.
If you’re consistently low or high during certain times of day you may need different settings for those times. Don’t assume what your doctor will do - thru may surprise you!

Oh yeah, I’ve been diligently checking my dexcom against finger sticks as of late. recently it’s been almost always reading low (but within their 30 points of error margin or whatever, which I understand since it doesn’t read blood glucose and is behind). I had 2 replacements sent to me just a month ago or so myself.
I just sent them a message, so we’ll see what they say! I just know how she’s been in the past when I bring up issues and she doesn’t see them reflected on my Libre or Dexcom (despite me saying I caught it before things went south or that my finger sticks were showing different). Fingers crossed I can get some answers!

@xgoingdownx Welcome Lauren to the JDRF TypeOneNation Community Forum! I know what it is like not knowing another person with T1D; I never met any in school or college - I never disclosed my diabetes. The first diabetic I met was around 1960 when I coached Little League baseball and the mother of a 10 year old told me she pulled strings to get her son transferred to my team because she knew I’d understand diabetes - I think my mother might have spread the word.

Much of what you describe about your rollercoaster ride with your t-Slim can be explained logically - but TypeOne never follows logic completely. I’ve been using Control IQ [CIQ] since the month it was made available and have had good results - 90%+ TIR on the standard range configuration. My “success” can be attributed to the fact that I’m not afraid [ seven decades insulin self-management] to play around with settings and experiment. On my pump are programmed six Profiles to fit expected activity - hopefully I remember to change the Profile when needed; yes, for an octogenarian I remain active. I’m NOT a professional diabetologist so what I offer below are mostly my observations.

  • Profile Settings are very important, and with CIQ I suggest “be conservative” with Basal and ISF [insulin sensitivity factor / correction rate] and more aggressive with Bolus.
  • ISF - may be the most important CIQ setting in that it affects all bolus infusions - Standard & Correction. Keep in mind the basic calculation formular. This will involve experimenting and observation; in my Basic Profile, my ISF ranges between 80 - 100 depending on time of day. CIQ “over correction” is a fault that I’ve reported even though it supposedly only provides 60 % of calculated dose; a higher ISF will reduce the correction-bolus.
  • IOB - displayed on the screen and used in calculations relates ONLY to Bolus infusions - keep in mind that a portion of basal delivered over the past 4 hours is also active on-board insulin. Over basalization for your activity level could be the culprit for your post-lunch lows.
  • Basal Rates - even though Tandem says CIQ overrides Profile settings - unlike the Insulet and Medtronic formulae - I believe that these settings should reflect the user’s actual requirement. By comparing the “Calculated” Profile basal daily total with the actual “Delivered” basal and bolus in the pump history you will see if the two numbers are close; then+ look at the daily t;Connect to see where programmed differs from delivered.
  • Sleep Mode - that sleep mode does not allow any correction-bolus. Targets differ depending on mode; Meal-Bolus target is always 110 mg/dl. Exercise Mode target is 140; Standard Mode is 120; Sleep Mode is 110.
  • Carbs - I’m not afraid to eat carbs; I usually eat 225-250 grams daily and bolus accordingly. As a result of being active and eating, my Bolus:Basal ratio has been around 70:30% during the life of four pumps [the Endo who teaches this stuff at the University Medical College thinks this is weird. My need for low basal may be the result of my low BMI coupled with regular activity and love of good food.

Lauren, you are welcome to vent and ask questions; we are here to share what has worked and what has not helped. Frustration can be the second name for diabetes; my wife got me over that many years ago, married 56 years, by telling me to pit-aside days that went wild and try something different tomorrow and enjoy the many successful outcomes. I apologize for being so long-winded.

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Thank you for your insight, especially when it comes to the pump! All I’ve known so far has been the CIQ settings because I got it in July of this year, so I even got the mobile bolus as it came out (which I love, honestly). I use the sleep mode only when I don’t want those boluses (because honestly more than once my Dexcom has been 30 points higher than I actually am and it’s given me that extra insulin that I didn’t need - usually because I can easily walk/work it off and those boluses feel much too large)

My doctor got back with me and for now I’ve made a new setting for my basal to be set to .8 instead of .9 from noon to 4 pm, hoping that helps those lunchtime lows.
I’m not an incredibly active person, so keeping low carb is probably best for me diet-wise, I just wish I could get the hang of the bolus to activity ratio. It feels like even when I take a few carbs away from my calculation it can send me too high, other times it’s just right. I’m trying to keep better notes now that I’ve had these problems recently.

It’s good to know that you’ve experienced the over-correction from those boluses given by CIQ. I don’t mind it delivering them, but I guess I should change my correction factor in the pump if it’s going to constantly overdo it. I’ve been able to take my blood sugar down in a way I feel comfortable with smaller doses (instead of all at once, going from 150 to 135 in 5 minutes really freaks me out because it makes me wonder if that’ll keep happening, I feel much safer seeing those numbers go down at a slow and steady pace).

I understand I more than likely worry too much, I know when I was using the Libre and MDI I hardly checked the Libre against a finger stick and I probably didn’t test nearly as much as I should have, so having the pump and Dexcom have been a blessing and a curse. Some days I can go without looking at it much and others I’m babysitting it. I have been able to be 90+% in range with the pump, my endocrinologist is thrilled, but it’s made it easier for me to worry over it.

It’s so nice to have other people to talk to about this stuff since I don’t really have anyone else.

Lauren @xgoingdownx, you have a wonderfully mature way of looking at your diabetes management style and seeking solutions. Your TIR is evidence that you know what you are doing.

As far as I:Cr [insulin to carbohydrate ratio], I suggest that you begin by validating your basal rates first. I do this periodically by extended fasting; on a day without extraordinary activity and eating, I will eat a normal supper for which I know the carb count and bolus accordingly and, then not eat again until after noon u unless I am experiencing a low - monitor BGL every two hours and write down the values. This can be done with or without CIQ turned on; if CIQ is engaged, you will need to review t:Connect charts to take automatic adjustments into consideration. Do one section of the day at a time; a few days later, eat breakfast and fast until suppertime. After it feels as if your basal rates are pretty good [nothing is perfect], begin playing with I:Cr. When basal rates are good, a mealtime bolus should let your BGL rise and within 3-4 hours return BGL to no more than 50 mg/dl [less is better] to pre-meal 110 mg/dl… If you go below 100 too soon, the I:Cr should be reduced.

I don’t get overly concerned by higher BGL following an intensive fast-acting carb meal as long as the high is reasonable; what I’m more concerned about sharp up & down swings. One of the first numbers I look at is my standard deviation and want to see that in the low 20s.

A decision I made after using a Dexcom G5 - later G6, was to “trust” the CGM and go with that and very rarely do a finger-stick BG. My thought is that the G6 is laboratory tested as more accurate than any BGM; MARD Rating between 5 & 6 while the best of the BGMs falls 8 and higher - lower rating # is means more accurate. The first device ever to receive "FDA Approval, following independent lab testing by FDA, for bolus calculations was the Dexcom G6; the latest Libre now has that approval. No BGM has received that FDA Approval; many meters have received FDA 510(k) Certification for use when manufacturer data indicates accuracy within 15%.

Welcome Lauren

Welcome to the group.

I can’t help you with pump stuff cuz I don’t have a pump. MDI and Libre.

But what I can tell you controlling BS is not an exact science. Can be more of an art than a science.

While at times you can get it just right and roll along for a while and then, boom, it doesn’t. “Just when you think you got it figured out, things go haywire.” is my quote.

I’m not telling you this scare you but just to let you know you are not alone with what you’re going through.

You have the tools. Especially the CGM. Get to know what makes your BS go up. Certain situations, or certain foods, different doses. After a while you’ll be able to have a better idea on what’s going on better able to control it. You’ll know what to do from experience. Some of of it kindof trial and error.

When I was diagnosed I was told “A diabetic has to be their own doctor” and it’s true.

You can do it.

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Hi @xgoingdownx. One thing about using Dexcom - which you probably experienced with Freestyle as well - is, checking those numbers can be addicting. The problem is, with a pump it’s particularly tempting to take a correction when we see the numbers going up, or to get a snack or adjust delivery if they’re going down.
Keep in mind, unless you’re low or low normal and trending downward - or you’re getting ready to exercise - you should wait a little bit to see if the drop stops - it may level out on its own if you give it 15 minutes or so; and if you see your numbers rising, hold on - your insulin may not have caught up to the carbs. Adding more - stacking insulin - doesn’t help it work faster, and when it does there may be a severe drop (trust me, I knew this from personal experience). You should not add more unless you took in carbs that you didn’t cover in the first place: my doctor told me unless that was the case I should wait # hours before adding on - ask your doctor what that # number should be for you. Sometimes I was high for a while but when it did start to come down I didn’t go low. By the way, do you bolus before you eat, or just as you are about to start? A 10-15 minute advance is helpful for some people.
If you are regularly having issues without stacking insulin - or going low - that’s another indication that you may need to work with your doctor to adjust some settings. Figuring out what works best for exercise takes some trial and error, but good logs will help you find the patterns.
PS - check out the JDRF Resources link - there may be local groups in your area where you can meet other Type 1s “in the wild.”

I learned my lesson on stacking insulin back when I was still on MDI, my problem is that the pump will end up doing this to me instead! I like to give it time to work for a bit and the pump senses that I’m going high even with insulin on board and it automatically wants to give either another correction (after it gave one not even an hour ago) or one after I’ve just eaten. As much as I want to trust it to do what it’s meant to do, it’s sent me low doing that a few times.

I try not to correct lows too soon, though sometimes it does happen. I check my Dexcom against my meter like they say to do in those instances and if the numbers don’t match up one way or the other I try to treat accordingly. Part of my problem with treating lows is that I’m on medication that can make it harder to feel those symptoms and I have had problems in the past in feeling them, plus having anxiety it can mimic those symptoms and get confusing. Last week I had eaten lunch and was merely just sitting and working on a project (nothing strenuous, just cross stitching) and I started to drop. I waited it out, but I kept dropping, so I decided to treat it. I did the normal 15 carbs, wait 15 minutes. I wasn’t going up, so I did it again, which was where I made my error. I should have waited a little more because then I shot up. I’m not usually that bad when it comes to those situations but I also get panicky when I see those numbers trending towards the 60s.

I bolus as I eat because the times I’ve pre-bolused I just start dropping. It’s like sometimes the moment I give any insulin it starts working. (though not always) And I’ve had a few meals with absolutely no spike and just trending downwards until I go low or very nearly do (those were those lunch meals).

Definitely dealing with the issue of getting it right and then things going weird on me. The same exact breakfast every morning has now started to send me spiking when it usually didn’t! I hate how sometimes you can do the same thing and get different results. I know I was much less vigilant when I was doing MDI and using the Libre (simply because I had to scan it instead of just glancing at my phone or pump). I used to give way more insulin than I do now and I know part of that is the pump and part of it is what I’m eating, but thinking about how I was doing things even just a year ago is wild. I can’t remember how long I’ve been on insulin, it’s been 4 years I believe, so hopefully I’ll start to figure it out even better with this new delivery system!

Welcome Lauren!

This string demonstrates exactly what I love about this forum. Great insights and words of encouragement throughout. Do a search for the threads on the crazy things usually well meaning people say about diabetes sometime - good for a belly laugh and a feeling of solidarity.

I was diagnosed 23 years ago at 29. While I’ve been on a pump for 22 of those years - Medtronic up until they supersized it and now Tandem - and used to follow the Insulin Pumpers forum, I didn’t find this spot until about a year ago when I was just starting the same CIQ adjustment and learning journey that you are on.

I’m still finding that I need to work with my Endor’s office pretty regularly for tweaks and suggestions and I’ve found more here, and that’s after meeting with and messaging my care team weekly at times over the course of the year. CIQ is a great tool for better control, but there’s a LOT of learning and adjustments to be made. Way to much to figure out all on your own, though Dennis’s point about experimentation is a good one

Dorrie, I love your story about adjusting an entire unit in your DIY efforts, where your endo had you just adjust 0.1. That’s classic, and just the kind of impulses I have to resist myself.

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Thanks @Guildk . They probably went over it in training but sometimes you just get in your own head. Thankfully I learned fast and haven’t repeated that!

Hi y’all,
I’ve enjoyed reading this page for the last few days! I’ve been having some of the same struggles with CIQ but didn’t realize that someone else might be having some of the same issues.
I turned off CIQ maybe 2 months ago to fine tune my basals to see if that would fix some issues. Either CIQ wasn’t giving me enough insulin or it was stacking insulin and giving me corrections when I didn’t need it. For example, I’d eat a snack before exercising, BG would start to go up, control iq would correct and I wouldn’t realize it. High iob + exercise would send me low so quickly! (Exercise mode never seems to work for me)
The correction amounts usually seem funny- why that amount?
I also have bad sensors that will read higher or lower than I actually am. While I understand that some variation is normal, I’m talking 30-50 mg/dL differences between meter and CGM readings. I seem to get a wildly inaccurate CGM every 2 months or so- I’m not doing anything out of the normal, no meds or weird site placements. With a correction factor of 1/35 this meant that my pump would over correct by a unit or more, or switch off basals for hours (basal would be off for 30m, then on for 15, over and over) and leave me with small ketones. Neither situations are ideal.
While the g6 is amazingly accurate most of the time, it’s not quite accurate enough for me to trust it 100% of the time.The lag time is highlighted on days when my BG is moving quickly and my CGM just can’t keep up.
I think the biggest problem with any CGM-pump system is that it can only see numbers, not previous actions or reasons behind the number. It’s an algorithm. It can’t tell if that high is from hormones/stress/emotions, a forgotten meal bolus, or if I’m more or less sensitive to insulin today. It can’t see if you already ate something for a low or not. When CIQ sees a ‘bad’ number, it reacts. It doesn’t wait and see.

Side note- I am a 16 year old with constantly fluctuating and unpredictable bgs and insulin doses. My numbers are pretty good, my last a1c was a 6. But maybe since I’m a “hormonal emotional adolescent” CIQ has a tougher time with me?

Don’t get me wrong. I LOVE LOVE LOVE all of the technology- cgms, pumps, etc. Dex is my best friend (we get into fights sometimes but he’s still an awesome guy). CIQ was working great for me and I’d love to use it again. The technology is not perfect yet and there are so many details!
Thanks for all of the advice here! I’m probably going to give CIQ another try over Christmas break when I have nothing to do but read books and experiment with CIQ. I’ll start paying more attention to the little details you all have mentioned.

Oof- that’s long. Excuse the rambling echo chamber!

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I just wanted to add - typically when adjusting pump settings “carb ratio” and “basal rate” are the first things to come to mind. But active insulin time and insulin sensitivity factor may need to be adjusted as well.
Also, if you find yourself over-correcting for lows too often, you could ask your doctor about setting your target a little higher - not something insane like 50 points more, but maybe 20 would give you the comfort of a little more of a cushion. Again, ask your endo. I am not a medical professional - just sharing something that I personally have found helpful.

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@6yGodsGr Honestly it’s nice to hear other people finding this useful and that others are also dealing with similar issues. Since this is my first pump it’s an adjustment, period, even without CIQ. I’ve struggled with exercise mode a few times, but usually it works out fine (but I keep a close eye on things and don’t do anything too crazy, mostly just walking).
I’m in the same boat about the Dexcom g6. I do love it and I feel like it has been more accurate than the Freestyle Libre, but with the amount of times it’s been off I have a harder time trusting it 100% of the time. I try to let it work itself out for a good 24 hours before I calibrate it but sometimes that doesn’t feel like much of an option. One night while we were on vacation I had to replace a sensor and my transmitter battery wasn’t so great so I had weird readings - 43 when I was more like 90 something and it was 3 am so I couldn’t just let it sit there. (I share my readings with my parents and my husband just in case lows like that happen so they get alerts if they aren’t around me even though I’m in my 30s, I think it’s a good idea)
And I totally agree, the technology is great and I love it (I really don’t know how I’d fare if I didn’t have it) but it is still not perfect. I’ve had good success with CIQ for the most part up until last week to two weeks ago so I’m not sure what’s going on with me whether things just need changing or what but I wish you the best of luck on your break with trying to figure things out for yourself!

@wadawabbit (not that this is helpful since no one here is a doctor but I’ll share regardless, I always find it interesting to see everyone else’s settings) Right now I’m at .9/hr, my correction factor is 1:30, my carb ratio is 1:5, we have me set to stay between 80 and 180, and my insulin duration is set at 5 hours. So far the only thing I’ve changed is putting me at .8/hr between noon and 4 pm because that’s when I’d see the lows more often. At the moment I’m still experimenting with different foods and carb counts to see if my highs were attributed to a specific thing I was eating before messing with too many settings yet. (it’s looking like I might be needing to make more adjustments there, though…)

Hang in there. It’s frustrating but important to give new settings a few days to settle in. I personally keep my low number at 110 to allow some wiggle room.