New pump user giving up (?)

Type 1 and LADA
1

Hello, all! This is my first time posting, but I’ve been reading these forums for a long time. Long story short, I’ve been T1 for about 34 years and have always been on MDI.

In early April, I made a sudden decision to move from MDI to the T Slim x2. Basically, I had some scary lows after meals (and overnight) that made me nervous about bolusing for meals, followed by emergency surgery that led to insulin resistance during recovery. I was working hard to manage my BG during recovery, and my endo said to get on the pump immediately (less than two weeks after major abdominal surgery). He wasn’t willing to try to adjust my dosages, and I just wanted to feel better.

I met with the pump educator, did a three-hour training, and went home with my new gadget. Since starting the pump, I’ve had one issue after another, and at this point I’m considering going back to MDI (basically today).

These are the issues I’ve experienced:

  1. kinked cannulas with both 6 and 9mm AutoSoft sets. We fixed this by switching me to the TruSteel. Problem solved except…
  2. For the past week I’ve been dealing with large bubbles in the tubing. About once per day they accumulate in the last section of tubing, and I have to remove the needle itself, bolus the bubbles out, and relocate the infusion. I’ve watched every YouTube video, read every post, contacted my entire team and asked for advice on the bubbles. Tandem told me yesterday I was “doing everything right” and should be ok now but offered to send me a new box just in case I had a defective one.
  3. Normally when I relocate the TruSteel, I have no issues with absorption. Last night I changed it around 9:00, and everything seemed fine at 11:00 when I went to sleep. I had a small rise but nothing alarming. I corrected and went to sleep. When I woke up at 11:45, my BG had risen dramatically. I spent hours working on correcting the high, which, frustratingly, the Dexcom didn’t catch. It was reading 150 when my meters were both reading 180, so of course it didn’t alarm. My BG rose to about 210, and I’m grateful I caught the rise myself. But that brings me to another huge frustration -
  4. Dexcom accuracy has been a major issue especially with CIQ running the show. I have yet to have a sensor that lasts 10 days, and most only hang in there for 4-6 days before the sensor errors, three evil dashes, and serious inaccuracies begin. I have called Dexcom and Tandem, and the most insight they’ve given me is that slim people sometimes have these problems. Not helpful. I’m a researcher by nature, so I’ve read every tip, trick, and hint on the Internet. Nothing seems to have helped.

I know this is a book instead of a post, but I’m struggling with this (very expensive) mistake of going on a pump after all these years. I’m always hopeful that I’m just doing something wrong and once I figure it out I will fix the problem, but another sleepless night with the pump has made me question myself. Around 2am I decided to go back on MDI, but now I’m questioning myself again. On the one hand, the pump works great when it works (80% of the time?). On the other hand, when it doesn’t work right I feel like I’m spiraling and not in control at all. And last night was pretty terrifying.

I would love to hear the community’s thoughts. Anyone ever experienced these things? I’m open to feedback although I may cry if it’s harsh after another sleepless night. :slight_smile: Thanks so much!

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I’m a satisfied and long-time user of insulin pumps (34 years) but have not used the Tandem CIQ system. Having said that, you are a long-time user of MDI. I presume you are generally happy with your glucose control on MDI.

I think your instinct to return to your familiar MDI is a good one. You should, however, be comfortable making dosing changes on your own. Have you read any of the patient-centered insulin dosing books? Think Like a Pancreas by Scheiner is one of them.

Seems like your doctor forced you onto a therapy that you would not have chosen otherwise. That was a bad tactic in my book.

By the way, welcome to TuD, @Becki1!

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Thank you, Terry. I appreciate your perspective, and I think that’s a big part of the issue. I was rushed into this in an emergency situation, and it just doesn’t feel like a good fit.

Maybe if they had recommended a bit of a less complicated pump, I might feel differently. The cartridge filling process itself feels way above my pay grade, like I would need a medical degree to really get it right. Live and learn, I guess.

Thanks for the support. :slight_smile:

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I’ve had T1 even longer than you, and I am still MDI. So I think it is reasonable to return to MDI if that makes you more comfortable. But it sounds like you are a first time user of both pump and CGM, which can be a lot to take on at one time.

Rather than burying all this tech in your closet, I suggest you continue to use the CGM, in order to become more familiar and comfortable with that. You will find in time how to use the CGM to get reliable readings from it. Once that is the case, adding on a pump to make use of those readings will be much easier and will make a lot more sense.

You may well decide that neither CGM nor pumping is for you, which is fine. But since you have already paid for the tech and have it in hand, it probably makes sense to give it a longer and fair trial before giving up on it. Personally I think the CGM especially is worth the effort to include in your toolbox - it isn’t perfect but can be very useful. Buying the book Sugar Surfing by Ponder is a next step if you want to make best use of the CGM.

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Thank you! It’s good to hear from another long-term MDI person. I’m definitely open to keeping the Dexcom. Maybe without the pressure of having it dose me with insulin (or not) incorrectly I will like it a little better.

I used the G4 or G5 (not sure which) a couple years ago and was fascinated by the data - just not enough to keep paying for it. But it would be nice to save my poor fingers some trouble. I tend to be obsessive with blood tests and have kept a pretty fair A1c because of it.

Thanks again for your input and suggestions.

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Hi, I was dx type 1 in 1959. I have never used a pump and have used a CGM for about 2 yrs. I too am thin, and have rarely had a sensor work for 10 days. I am not doing anything wrong, the device just doesn’t like my body. I still think it is a great device though.

I haven’t consulted a doctor for insulin advice since my son was born 32 yrs ago. For almost 18 yrs my A1c has been in the 4.6-5.3 range. Once I had a 5.8. My TIR is quite good.

I am just writing to say that a pump is definitely not necessary to achieve excellent control. If you find that you prefer the convenience of a pump, then I think a pump is an excellent tool.

I must also say that I hate glucose readings of over 160 and I try to stay under 140-150. I immediately get on my exercise bike if my glucose level is climbing. A reading of 55 doesn’t bother me at all. When I drop below 70, I just eat something.

Good luck with deciding what to do Becki, and welcome.

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It took me a long time to figure out my pump. I’m also on a tslim. I was a pumper before though.

The key is to get the settings right , if they are not right you will be very unhappy.

I found I needed more insulin with my tandem than I needed before. I had to adjust my carb ratio and my sensitivity.

Once I got all my basal settings going it was smooth sailing.

I draw a flat line when I’m not eating. Usually around 100 mg/dL

I used to have a strong predawn phenomenon. Now it gets flattened out so I can’t really see it.

I’ve been type 1 for 34 years too. It took me a month to get it working, but I’m very happy I did it now.

I can tell you how to do basal testing if you don’t know how.
I can give you pointers how to set sensitivity and carb ratio too.

The person who sets up your pump will not know how to fine tune it. You doctor might not even know.

I had to set my sensitivity to half of what it was before.

So if you want to try again, you really can do it. It takes patience, and that’s tough when you are worried and your sugars are out of control.

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Thanks, Marilyn. I appreciate your perspective and admire your control.

I had pretty good control on MDI with my most recent A1c at 5.5. I felt good about that and, like you, always responded to rising blood sugar by getting in some movement. When the pump educator asked for my correction factor, I told her honestly I hadn’t taken a correction prior to surgery in recent memory. When I run 150-160 now, I have hyperglycemia symptoms. That seldom happened on MDI and has been happening for days on the pump. My suspicion is that the bubbles are affecting things, but it could also be stress.

I talked to my endo’s nurse today about switching back to shots, and of course my doctor was of limited help. I am considering going back to Tresiba and Novolog tomorrow morning. The nurse’s suggestion was to start Tresiba in the morning and take Novolog shots today. Apparently she doesn’t know much about the need for basal and DKA? And they wonder why we don’t listen. :wink:

The adjustment period may be painful, but I’m really leaning toward MDI again. Thanks again for your help and support.

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Hi Timothy - Thanks for your input. I hear you on giving it time and have been trying to do that. We’ve made lots of adjustments to basal and whatever else over the last six weeks.

The thing is that the pump works great when everything works. My main issues are that the Dexcom is pretty unreliable for me, which throws off what CIQ can do. Between that, infusion set issues, and these dang bubbles, it seems that things very seldom all work at the same time.

I wonder if starting with an easier to use pump would’ve been better for me as a newbie. Do you find the cartridge loading and priming process to be difficult? It is a real barrier for me.

Thanks again!

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Good luck making the switch if that is what you decide to do. A 5.5 a1c is great! I really love the Tresiba/Novolog combo. I take Tresiba in the morning and am usually level all night. I rarely have a higher glucose level when I get up.

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Thank you! I liked the flexibility of Tresiba and the long duration. It was giving me some overnight lows when I took it before the pump, but I loved the control I had all day, and I woke up 80-90 every morning without fail. It really is incredible.

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I feel your pain. Unfortunately most medical practitioners just aren’t endowed with the training/experience to really understand what’s going on with Type 1(ish?)s and general insulin dependancy. They know the standards the various medical associations set and the perfect behavior they outline to achieve them, and little with handling real life. They’re training on medical devices comes directly from the manufacturers, complete with rose-colored glasses, and little emphasis on troubleshooting. Thankfully we have an INCREDIBLE community from which we can learn!

You said you’ve tried all the Dexcom tricks. Can you better explain what exactly you’ve tried? Are you staying hydrated? Divide what you weigh (lbs) by 2, and that’s how many ounces of water you should be drinking every day. More if you’re doing things that dehydrate you, like extreme exercise, alcohol/caffeine, running high blood sugars, etc… You’ve mentioned being lean, so abdomen might not work for you. What alternative sites have you tried? Anywhere you can squish is the goal. Arms, hips, butt, inner thighs, breasts, etc… (I’ve tried breasts myself, but it doesn’t work so well for my endowment, too much movement.)

I did so much research before I chose the T:slim for my first pump, so there was little left for the pump trainer to teach me. The one thing I really did take away from that session was she explained to me that new infusion sites actually need to be flooded with insulin before they start to properly absorb. She told me that even though my particular cannula only needs a 0.3u prime, that I should use the 0.7u choice instead. Over the years, I’ve learned that I actually need substantially more than that to avoid the new-set spike, but I won’t say how much I actually use so as not to influence your choice. That little bit extra when you first insert the set makes a MASSIVE difference for me, though. You might want to try that particular piece of advice for yourself, though, and see if it alleviates some of the trauma you’re experiencing when changing sites. If you still see climbing, you can always increase the “fill cannula” option until you figure out what works for you. I actually have to exit the “load” screen and come back for a second fill because the most it allows is one unit at a time. (There are different ways to prime the tubing, I insert my sets dry, so there’s no insulin in the cannula at all when it’s inserted).

And for the record, if you’d like to go back to sodt cannulas, the kinked cannulas can very easily be avoided (barring manufacturing errors), no matter how lean you are. If you’re using an automatic inserter like the Autosoft XC (my personal favorite), Autosoft 90 (don’t like this one), or Autosoft 30 (more shallow needle angle, good for lean people and those with a lot of scar tissue as the needle winds up at a different tissue depth). Kinked cannulas are nearly always caused by handling the inserter device too roughly. You can actually pull the infusion set right off it’s introducer needle, before you insert it. Without the needle supporting the cannula, it just bends right in half when it touches your skin. If you were to follow the written instructions to the letter, you wouldn’t see a kinked cannula again. But going back to the lack of experience on the medical professionals part, they don’t know what minute little details need major emphasis, because short-changing that step = kinked cannulas.

  1. The biggest thing is that you have to TWIST the blue needle cover until it spins freely, before easing it off. The plastic cover likes to stick to the cannula, so if you just yank it off carelessly, you’ll drag the whole infusion set along with it.

  2. Hold the inserter up to the light. You’ll actually be able to see the cannula ending before the tip of the needle. If you DON’T see the introducer needle sticking out beyond the cannula, go ahead press down firmly on the white adhesive cover. You can push the set back down onto the needle. (This step isn’t in the written instructions, but it gives me great confidence that my set is going to work right.)

  3. When you remove the paper spiral, you still have to be careful not to pull the set off the needle. Instead of yanking it straight up, pull it off to the sides, unwrapping it around the inserter.

  4. Don’t tuck the tubing into the half-circle cutout until after you’ve pulled back and cocked the mechanism, otherwise it might pull on the tubing, pulling it off the needle.

  5. Keep your fingers clear of the moving white parts when you squeeze the inserting trigger. Getting a finger caught doesn’t hurt, but it does stop the needle pre-maturely before the cannula reaches its final depth.

I know that sounds like a lot to spell out in detail, but they’re things that barely cost you a moment of time… Just awareness.

If you really like the manual insertion of the TruSteel sets but wish you could have it with a soft cannula (less pain and scarring), then Tandem makes a set called the Varisoft. It’s very similar to the TruSteel, except you actually pull the needle back out, leaving just a soft cannula in its place.

As for bubbles…

Have you tried watching YouTube videos? There’s a surprising number of different ways to fill the cartridge and lots of tricks to be gained. Some people don’t even suck the bubble out of the cartridge, but rather just flick the cartridge like you would a syringe to send the bubbles to the top, and let the pump eject the bubble while doing the fill tubing step. (That’s not how I do it, but I’m probably already overwhelming you!). Also, when you connect the tubing to the cartridge, make sure you’re really cranking it on tight. And re-check it once a day. Also, never disconnect from that point, it’s always better to disconnect at the infusion site to keep air out if the system.

While it’s perfectly okay to decide the pump isn’t for you, you might be stuck with it if you’ve had it more than 30 days. If you’re okay that point, don’t give up on it yet. Follow along with a video the next few times you need to change things, and it will become your new normal before you know it. It’s only overwhelming in the beginning, when everything is new and different.

Some people even use the pump with saline for a while, while continuing MDI. It let’s them get used to the new things slowly without their life literally hanging in the balance.

I hope you get more comfortable with everything soon!

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Thanks for your feedback, Robyn. I really appreciate the time you took to offer help. At this point, I get anxiety anytime I even look at the AutoSoft boxes in my supply cabinet, so I’m not sure I’m ready to try again yet. Tandem did send me a single Varisoft to try, but I haven’t had the nerve yet. The needle seems scarier than the TruSteel, but there is the benefit of being able to detach directly from the site. Maybe if I can fix the bubble issue I’ll give it a go.

Part of pumping is being brave enough to try new things, it seems. The other part is knowing what to do when things aren’t working, and that’s where I think my training fell short.

For the Dexcom, I have been inserting it in my abdomen mainly. I make sure I choose a spot where I can pinch some fat although honestly my torso is overall pretty lean. I tried my arms twice on the advice of my CDE, and both times were disasters with inaccuracy and false low alarms blaring night and day. As for hydration, I am consciously drinking glasses of water and G2 throughout the day. I could do a better job keeping track of exactly how much I drink, though, so thank you for that tip. I would need to drink about 60oz a day based on your calculation. That doesn’t seem like too much, but it may be more than I’m currently drinking. I also tried calibrating once every 15 minutes for three consecutive readings as advised by Tandem, then not calibrating at all as advised by my Tandem rep. It seemed to make no difference.

I appreciate your feedback and feel grateful that this community is so supportive. I often feel alone in these things, and it’s nice to know there are others out there like me. :slight_smile:

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You can turn off ciq. And use it like a regular pump.
Also I find that only the back of my arm works with dexcom.
When I put them on my abdomen, it moves too much and it gives crazy numbers.
You might need to find a place that works more reliably.

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I rotate between back of arms and inner thighs for dexcom, and put pump infusion set on stomach.

When first switching to Tandem pump from Medtronics, filling the Tandem cartridge was certainly more challenging. But with hints from here and Tandem support, have not had problems. I reviewed the online videos several times and made changes to how I was filling syringe, and had missed step to withdraw air from cartridge. By comparison, filling medtronic reservoir was much simpler.

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Thanks for the idea. I do sometimes turn CIQ off when the Dexcom is especially glitchy. It sort of negates the reason I got this pump in the first place, as I’ve never had issues with taking injections. But it’s something to keep in mind.

I’ve tried the Dexcom on my arms twice and had no luck. They seemed very inaccurate there and never really caught up. But then again if they don’t catch on in 12 hours or so, I tend to think they never will. Is it something that takes time to settle in? I’ll admit I’m not very patient. :slight_smile:

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The cartridge filling process is a bit of a bear. The strange thing is I thought I had that part all worked out until last week when I suddenly started seeing these huge bubbles. I remove the air from the cartridge and clear bubbles from the needle, and I always use room temperature insulin.

I wonder if it’s possible that I got a leaky or bad batch of cartridges. Is that a thing? Maybe I should call Tandem (again) and ask. Not sure how many times in a week a person should call Tandem, but this would be at least three for me. :slight_smile:

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Yea so. I put a new sensor in at bed time when my old one will expire in the morning. So that way it’s been in 8-10 hours before I snap in the transmitter that’s usually enough time to get acclimated. Then 2 hours of start up.

Secondly when I insert my new sensor I stick the tape to my arm, then I pull back on my skin to lift it up before I hit the button. So it has lots of room to go in and not hit muscle.

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Yes it is possible to get a bad batch of cartridges and IMO that would explain the issue of suddenly getting big bubbles in your tubing. I’m new to pumping and use the X2 as well. I have had great success with the system and Dexcom works really well for me which I think is key to these closed loop systems working. If the CGM isn’t accurate then the whole thing is troublesome.

For the Dexcom, Have you tried using your thighs? I know of quite a few people who swear by it. Some place the dexcom on the front of the thigh and others on the inner front. Dexcom works best when the wire is situated properly in the subcutaneous tissue which is why very slim people seem to have issues with it.

Try not to put any pressure at all on the inserter when pressing the orange button. In fact you should pull the inserter away from the skin slightly in order to insure it is going into subcutaneous fat rather than muscle. Have you tried inserting the sensor up to 24 hours ahead of starting it up to allow it to acclimate to your body?

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Honestly a pump isn’t for everyone.I didn’t get one until I found out they had tubeless pumps available. A lot of people have great control on MDI so why switch from something that works for you? And maybe later you might try it again.

I loved my pump as soon as I put the first one on, A lot of the time I would take a shot to cover a meal and a snack or have to eat to the shot I took. For me breaking up dosing and the ease of the small amounts of dosing really made a difference. But one of the things with a pump,is while you can have better control the trade off is you have to pay more attention to it too. So it really isn’t for everyone.

I would try to stay with the Dex though unless it really drives you nuts. At the very least it will cut down on how many finger sticks you have to do, but you might have to calibrate it a little more or not rely on it for dosing? But it will still provide you with your trends. So you know easier when you are dropping or your blood sugars are going up or how exercise is effecting you. To be able to know what your BG are doing all day and night is a wonderful thing although I do take a day or 2 break when I change sensors.