Infusion sets are constantly failing even on new spots

Hey there. I’ve been a diabetic all of my life 20+ years of life and have been on the pump since I was 9-10. I’ve been good on rotating but the last couple years due to the price of my infusion sets (I use a medtronic Inuslin Pump) and the fact they only provide 10 which means 3 days minimum (not including months with 31 days and if one fails) means I kind of have to make them last an extra few days out of necessity. This might explain why I seem to have no more good spots around my stomach to inset an infusion set. I’ve been using the Quickset naturally but now it always puffs up around the infusion set and never delivers insulin to me. I’ve tried the back for the first time not to long ago and there was just a lot of bleeding. The very first time it got infected. I make sure to really clean it with a prep pad and use a quickserter.

I’ve discovered I’m getting the same exact results on my outer thighs and buttocks. Not even a day passes and my blood sugar doesn’t go under the 230 mark and makes me realize they’re just not working. I’ve also grown more paranoid about it. I had this issue but on a lesser scale before and my endocrinologist had me try the silhouettes, the first time bled so I just been sucking it up with the quicksets again and just trying to be careful. Going through 5 of them and on my 3rd sihoulette now for the last 4 days, I realize this isn’t going to work. Being in the 200s has taken a real toll on my lately but if a sihoulette in a new place on my leg still doesn’t deliver insulin, I’m not sure what exactly is wrong. I’ve now also noticed I’m getting a ring where the adhesive was. I wouldn’t say I’m allergic because this is the first time it’s happened. I’m also not sure it’s Lipohypertrophy because my spots look nothing like it. My skin around my stomach is only a slightly different shade and have the spots where an infusion set was but no bumps.

I’ll reach back to my doctor Monday but I didn’t know if someone had the same experience and found a solution that worked for them. I don’t want to stop using the pump and go back to needles but I don’t think there’s any deeper cannulas available that might work. Maybe the ones that are metal that stay will work. If I go to those and they work, I’ll edit this post but this whole experiencing is beyond frustrating given the cost of them that doesn’t get compensated. I also don’t want to use my arms as I want to keep it reserved for the CGM.

Thanks in advance for any response.

I’m not certain but think you may have developed some scar tissue in your favored infusion sites. Your high glucose levels definitely seem related to poor insulin absorption.

I know you’d rather not go back to needles but perhaps this is a good time to discover a viable multiple daily injection or MDI routine. Even those of us who are using a pump need a MDI routine to fall back on when our pumps fail or other emergency contingencies.

Many new long-acting insulins have come to market in the last several years that make highly successful MDI routines possible. I experimented several years ago with Tresiba and found it effective and relatively easy to titrate.

If you try out an MDI regimen and discover a viable routine, you will then have a ready alternate should the need arise. You will then have given some of your infusion sites a rest and can then restart your experiment with finding a suitable infusion set.

If you decide to pursue the insulin pump route instead, I would encourage you to see if you might consult with a CDE, certified diabetes educator (or whatever their favored credential is these days) for help. A second set of eyes and other ideas could be just what you need.

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I appreciate the advice. My main concern is I’m exhibiting the same issues on site’s never used before. I’ve only recently began using my legs and it’s hardening around the cannula too so I wasn’t sure if there was a different reason like something antibodies might remedy. I’m lucky enough to have a very passionate diabetologist so my fingers are crossed with that. I’ll keep the alternatives to Lantus in mind however it always comes down to health insurance coverage (which is why Aspart is out of the question and makes me remain on Novolog)

I’m sure needles wouldn’t be as bad in conjunction with a CGM since I’m able to eyeball how many units to take (plus I’m sure I can find a bolus calculator) but it’ll be a pain carrying them around and applying in work clothes when you have a tucked in shirt and belt. I know those are nitpicky and that prompts another question I have is will scar tissue ever be useable again? Those are questions I can take up Monday. Again, just wanted to know if anyone had these experiences before. Appreciate your response once again.

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Did you know you can request samples of different infusion sets through the Medtronic help line? If you have not done this, you might want to try that rather than pay out of your own pocket to experiment with different sets. While it is not a long term solution, getting samples to test might be helpful in the short term. :slightly_smiling_face:

Before calling, I suggest that you take a moment to familiarize yourself with Medtronic’s infusion set offerings. Have an idea before calling which sets & cannula & tubing lengths you want to request. The Medtronic cust reps may only know what happens to pop up on the computer screen in front of them. I did not get any guidance on what sets to try when I requested samples.

Also be aware that you might not be able to get exactly what you want. The reps can only ship samples of what Medtronic has set aside. So it helps to be familiar with what Medtronic offers before you call in case you have to pick between limited alternatives.

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Thanks, I wasn’t aware that they offered samples, but I knew the doctor did as that’s how I got the silhouettes.

I was looking at this: https://www.medtronicdiabetes.com/customer-support/infusion-set-support/compare-set and the main thing is I don’t know if need something that sticks further in than 9mm. The silhouettes go at an angle so I don’t know if they are actually going past any scar tissue or what’s the advantage of the angle at that point. I prefer how much harder it is to accidentally rip it off compared to the quick set. I can only assume it’s not safe to stick anything further than 9mm otherwise there would be an option for a bigger cannula. Maybe the metal one won’t help much either if the insulin doesn’t get absorbed.

I don’t know of a “straight in” infusion set with a cannula longer than 9mm. The metal sets I have experimented with are 8mm.

As you pointed out, the silhouettes are intended to be inserted at an angle so the cannula does not go that deep. My understanding is that if the cannula is inserted too far you run the risk of hitting muscle tissue and blocking insulin delivery by obstructing the cannula.

How “deep” is too deep depends to a certain extent on what your body type is. How much subcutaneous fat you have at the insertion site.

Hi there, i have not read the entire thread, so i’m replying mostly based on your first post;

did you ever try the “Sure-T” infusion set? I have also had many issues with the Quickset in the past.
The Sure-T has been much more reliable for me.

Also, it is known that after 2-3 days of use problems with insulin delivery can occur. But personally i could use the Sure-T for a bit longer period compared to the Quickset which would often stop working like the second day.

I hope sharing my personal experience might help :slight_smile: but remember i am not a professional, so make sure to ask a doctor for advice!

How certain does simly_try and/or others feel that this is a failing infusion set problem? I only ask because I find hardware failures super tough to diagnose.

1 = not sure
10 = completely certain

I ask because when I was on a MT pump, I experienced a LOT of hardware failures and I had a really detailed procedure to walk through all the variables that might be causing the problems and try and diagnose it. That was a long time ago when MT just didn’t send a lot of error messages when the pump failed. Like, my Omnipod always alerts for delivery failures and sends an error code to explain why the failure occurred (unless I tear it out completely, off the adhesive, and its laying on the floor, because it will just keep delivering and not know anything is wrong).

I feel like this has always been a sticky issue for MT and its really tough to troubleshoot this problem because you have to investigate soooo many potential sources of failure and it takes a lot of time and you are always sick and angry while investigating.

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Thank you for your insight in that it might be an issue with the pump. I studied it a bit and it does come out of the tubing just fine in my experience. That all but confirms that it’s with the cannula or if it does go through the cannula successfully, that it’s my body not absorbing it. I won’t be able to to tell that far. Just the educated guess when the insertion site doesn’t look good. I like the concept of the omni pod but as it stands, the cost is still lower with MT. I’ve been over 200 for days excluding when I took a manual shot and yea, it does make you sick and tired. I can’t keep using shots otherwise I can’t tell if the infusion set is working and I’ll either neglect it or double bolus. There’s still the issue of highs when basal isn’t working. It’s all a mess and the situation is frustrating and makes me want to hack all of the scarring away and hope new skin replenishes.

The insulin that you manual inject to correct is working fine? That comes out of the same bottle as the insulin in the pump? Like, your pretty certain that the insulin is effective and didn’t accidentally freeze in the car?

Do the infusion sites look like an allergic reaction? Could you post a pic? I’m having trouble visualizing it.

I feel like if the issue was scar tissue, that you would also see problems with MI??? Do other people agree/disagree? Like, wouldn’t absorption via MI also be affected and simply_try would also see variable or delayed absorption with MI making the corrections take a lot longer than 4 hours to take effect??? IDK.

The trouble, for me, with these types of issues is that I will overdose on insulin pretty profoundly, and then all of a sudden it will all kick in and result in extreme lows. But, that might take a long time, like 14 hours of corrections. Then, its often insulin pooling, I think. I think that its insulin pooling when I go outside and get some exercise, and that gets circulation moving, maybe I take a hot shower, and then ALL the overdosed insulin just impacts immediately. Have you noticed anything like that happen? Like, where you get hit and run over by an insulin truck all of a sudden? You might feel like a full day of corrections hit all at once.

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I can understand that. I have been T1 for over 50 years and have been experimenting with the side of my hips. I have had 3 pregnancies so I have the stretch marks, gotta be careful since they interfere with delivery. I use omnipods because I needed 24/7 insulin. That short break in the shower raised my BS 100 pts. Lately I have noticed that when I pick a leg area I don’t get the best insulin delivery. I wish you all the luck in the world. I hope someone in the forum can help you better then me. God Bless.

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The quick set marks are mostly faded now and it’ll be a bit before I’m home but this post I found is pretty close, minus the blood however I’ve had that happen a few times. This is my diabetes. | Diabetes Blog - Happy-Medium.net

Lately there’s also a more prominent purple ring where the adhesive is. I inject myself with a syringe on the lighter color of my stomach so that might be why the insulin works then. You know thinking about it now, I do seem to have to take a second shot if the first one doesn’t bring it down to noticeable levels. The insulin has never had anything abnormal done to it as it’s carried about in a backpack that’s always in room temperature or a heated car but narrowing it down could be either the insulin isn’t absorbing or the insulin is having trouble. My guess is on the first one still but yea, it’s a pain to troubleshoot as it takes time and watchful monitoring. I’m fairly active and I have not noticed any sudden drop from a potential 2nd injection and having both hit at the same time. It’s seems like it’s going to be painful trial and error. My real concern is if I happen to find a “fresh” spot and it works, this can’t go on for very long at this rate.

Another note, as I mentioned earlier, is it does seem to be from scar tissue but that doesn’t explain why it happened in my leg. It had the same purpleish ring and that closed, rough spot where the cannula was that goes to being a regular mark, no bump but I just started trying my legs for the first time.

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I can’t use my legs - there’s too much muscle. Insertion creates too much trauma and it doesn’t absorb well. The purple ring indicates trauma or bruising?

What’s your body type? Are you petite or thin? I know this is often an issue with infusion sites for children, women or men of a certain build.

If this is a physical issue about with your body or the infusion sets relationship with your body, then this is something that you can’t change (especially in the short term). If the hardware isn’t a good fit for your body, today, then you might ask yourself how long you feel comfortable playing with it and waiting for successful insertion. If that’s the issue, you will need to change eventually.

Sometimes there are bad insertions because some people’s manual insertion with their fumbling hands is an issue. They just have clumsy insertion techniques that result in more physical trauma at the site. There could be problems with the hardware resulting in bad insertion (like manufacturing defects).

If you have been using this device a long time and these problems just started popping up, then I’m leaning towards tissue issues because of the evidence you cite.

But, just on the off chance, if you have been outside shoveling or exercising in the winter (its 0 degrees here and pretty cold), that tube of insulin that enters the infusion site can freeze and that’s a disaster when it happens because it will melt when you go back indoors and the failure will be undetectable. I would expect total critical meltdown and BG = 400 within a few hours of that because there is essentially no insulin delivery or the insulin that is delivered has gone bad.

So, it seems that you are getting SOME insulin delivery, but perhaps not ALL of your insulin delivery.

Do you small Band-Aids (insulin smells like Band-Aids) at the infusion site that would indicate leaking instead of an issue in the deep tissue? That would confirm there’s a real problem.

Those deep tissue issues are really hard to work with. Forgive me, I just don’t want it to be that because there’s no easy, fast solution for it. But, that could be it. Its a bummer if that’s true. I feel for ya’. My problem solving for that issue is to decide that it can’t possibly be any other thing. If nothing else can be identified as a problem, then I think that you have to conclude that its a tissue issue.

The only way to conclude its a hardware issue, instead of a tissue problem, would be to try another pump type for a few days and see if the same problem is still occurring.

I assume that you have tried bumping the basals up in an effort to potentially increase the proportion of insulin that is effectively delivered?

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This may be completely wrong but could it be your insulin that is bad? Recently I tried fiasp and after a while it just seems it no longer works no matter how much I inject. I’m pretty sure it’s the insulin and not the infusion site because I switched back to novolog on the same site and it started working right away. I have since found others reporting on the same issue with fiasp on a thread I created recently on this issue so it seems it’s a known thing with fiasp.

While it may not be fiasp related for you, perhaps your batch of insulin has gone bad?

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You might have developed an allergy to the adhesive causing irritation and bad absorption. I spray Flonase on my skin then I put down a uv3000 take and I poke through it when I put in my set, this method makes it so I barely even see the spot where it was.
I use silhouettes and I really love them. You can put them in diffrent directions. If you pinch the skin before you insert you can avoid most veins

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I’m about average. I have meat on the legs but no overweight. I use the quickserter to make sure it goes in more properly. All of that insight is very helpful to help narrow down the situation. I did see insulin leaking out properly when I observed it unhooked as it gave a bolus.
I want to personally thank you and everyone who jogged the idea of bad insulin into my head as that makes me more keen to observant circumstances such as I think I took injections around the time my body naturally dips down in blood sugar (A little before meals). This made me try needles once more at night and what do you know, it’s not really going down. Kind of handling, two injections over 30-60 minutes and that tipped off by the fact my last infusion set didn’t look bad at all. I know even if I kept the insulin in good shape, things do happen and it was making the most sense for that to be the case.

I added yet another infusion set a little bit under my sternum since that was generally not used as well and I’ll have to do a lot of painful trial and error. Along with watching it. I took slow acting insulin last night so not only do I have to watch to more lows, I’ll have skewed results but so far that MIGHT be it but I won’t know for a little bit. All of the advice has been well appreciated, I’ve been sick with frustration and stay so high for so long, it feels much worse when your A1C is generally good and you’re not as used to this. I’m still concerned that active insulin in the pump isn’t going down a lot. I’m not sure what would indicate this as I don’t think it can tell if the cannula is blocked itself.

Thank you also for the idea of the insulin in the reservoir being a factor. Best luck that it’s just a bad bottle and a new one will work. I still may have immense tissue damage but hopefully this will just serve as a wake up call. If I can confirm that, I’ll update here.

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I referenced above, I’ll try that since just because it wouldn’t make sense, doesn’t mean I should fully rule it out. I’ve been on novolog for a while so switching it isn’t a factor there.

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I hope something pops out at you, simply_try. I feel for ya’. This is really tough problem to solve.

I hope you’ve had some better numbers since you last wrote… I want to echo the suggestion of trying a new bottle of insulin. That can also be the issue for me when running high with no other solution, even when there’s no good reason for it to have gone bad.

Also, my body has bad reactions to all of the plastic cannulas I’ve tried. Bad absorption, pain and swelling at the site… The only infusion set that works for me is tru-steel, And even this I can only use in certain areas without getting a reaction. I also have to use skin-tac wipes under the adhesive before inserting.

It’s possible you’ve just now developed a sensitivity to the plastic cannulas, especially since you mention the absorption is still an issue even using your legs, which you don’t usually use.
I’d try new bottle of insulin first, and then try a steel needle set also, just to test both possibilities. Let us know how it’s going!

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Thank you and everyone for their help through all of this.

I was able to get a bottle of humalog to test from the doctor but haven’t had a chance to try it. I’ve been using flasp in the meantime. I put a quick set in the back of my arm 2 days ago and at first it wasn’t yielding many results either then after some time it “started” to work. My blood sugar still had the issue of wanting to shoot up almost unnaturally into the 200-250 and fight to go down but then it started going down as as fast as it went up. Currently things seem stable but I’ll need a bit more time to figure out. It may be a combination of both having no other place for an infusion set AND bad insulin though I keep fearing the latter due to having so much saved and being so unlikely trying 3 that I got from different circumstances (One from the pharmacy two weeks ago, one from the doctor a few months ago and one from delivery last year but all not close to expiring).

My only other theory I had was I was sick as that can cause the same symptoms, but no temperature.

The next approach is since anything I consume makes it go up to that after a bolus (even if it doesn’t have that many carbs) I’ll bolus a bit more and do it a bit before since the infusion set DOES seem to be working in the same capacity as when I was using needles. So the part where my blood sugar isn’t going down without a fight is mostly over, now it’s keeping it that way.

Everyone has been really kind and helpful and I hope this thread eventually helps someone else experiencing the same kind of situation when they research it.