Where I'm At With This…

img-530pumpIt’s been almost two months since I began the trial with the Medtronic MiniMed 530G System with Enlite. I’d like to tell you where I’m at with this…

Truth?

I don’t know where I’m at with this.

The Medtronic customer service is phenomenal. Mostly phenomenal.* The Medtronic trainer has followed up with me and checked out my Carelink updates, giving me suggestions to improve my experience. The StartRight representative has been helpful.

My graphs and reports are, frankly, abysmal. My weight is up three pounds (and as an individual with food/weight issues, you know that doesn’t make me happy) and my A1C rose 0.2%, which may not be much, but I wanted it to go in the other direction. My CDE’s comment to me when she walked into my appointment was: “What is going on? These can’t be your numbers!”

Threshold Suspend

Here’s the thing I like about the Medtronic MiniMed 530G system with Enlite: Threshold Suspend. It does work.

Except when it doesn’t for me.

There have been nights that the Threshold Suspend feature is activated. My blood sugar is 104 mg/dl when I check. I shut off the suspension and restart my basal. It alarms again. By this time, I’m up, out of bed, trying not to wake John, and angry that the pump is waking me up for no reason.

Twice in the past month, it has legitimately suspended and I’ve treated, thankful that it woke me. I’ve yet to sleep through an alarm. (Man, that alarm is loud.)

But I’m finding, for me, that the noise from the alarms compete with the noise in my head over my blood sugars. I’m questioning constantly whether the numbers I see on my MiniMed 530G insulin pump are accurate. When they are, I breathe a sigh of relief. When they’re not, I breathe a sigh of frustration.

That’s a lot of sighs.

I love my Medtronic MiniMed Revel. I’ve said that before. Medtronic has been very responsive with every issue I’ve had with the Medtronic 530G with Enlite system. (The CareLink issue? That’s another story. Quick side note: I’m hearing from others that I’m not alone in my frustration with CareLink.)

My goal with diabetes management is to keep blood glucose levels within my prescribed range while minimizing the intrusion of diabetes into my daily life. (It’s a Hurculean task some days, but others…) The technology I choose to use is meant to help minimize the intrusion.

The Medtronic 530G with Enlite is designed to help minimize the severe hypoglycemic episodes with Threshold Suspend – and it does when the accuracy of the Enlite sensor is working correctly. I’ve had meter readings of 45 and my Enlite sensor is telling my 530G pump that I’m 82 (and the arrow is not trending down). I’ve had meter readings of 64 and my Enlite sensor is telling my 530G that I’m 64.

It’s Me. But is it?

The rise in my A1C is because I’m over treating when I go low. I know this now. I didn’t over treat quite as frequently before I began the trial, because I could see the fall easily on the CGM transmitter of my Dexcom. It’s not as easy to see that on the screen of the 530G pump.

I’ve had to turn off the predictor high and low alarms and the high and low range limit alarms for my sanity. That, for me, lessens the ability of this technology to minimize the intrusion of diabetes into my daily life.

Others are not having these issues and perhaps it’s because their diabetes management is better controlled or their own diabetes is not marred by delayed gastric emptying or quirky days. I’m still not giving up on getting this MiniMed 530G with Enlite system to work for me.

Anyone have suggestions?

*The customer service issue I had? I called in on a weekend to get a few sensors replaced due to sensor errors. I spoke with technical support, who made some less than supportive remarks regarding how I was trained by my trainer. Not cool.

I was also told that when the pump tells me to “BG NOW” to calibrate, I should wait 10 minutes if I’m not stable… which to me says that the pump shouldn’t say “BG NOW”… and if you’re not trained properly or don’t know better, your readings are going to be inaccurate. But when you get a BG NOW for the first time during the wetting period, after two hours, if your blood sugars are fluctuating slightly up or down, how are you to know? These questions have me up at night…

 

0 comments
  1. I’m so glad you wrote about your experience honestly.
    I hate my pump and I’m never going back to it and that was before this sucker came out. I could not and still can’t see the value in the threshold suspend. As you say, it works until it doesn’t. We all know how wildly inaccurate the sensor is MOST of the time and since that’s what drives the threshold suspend to activate I just can NOT ever see that changing unless the sensor gets more accurate.
    I habitually lived with my pump with no alarms because it would drive me to insanity. It’s why I stopped wearing the cgm almost all together (aside from cost being out of pocket at the time).
    I’m really just glad to see the kind of experience I full well expected when I saw this thing come onto the market. Not that I am cheering in your discomforts.. just that I feel right about my initial perception.
    Kudos for you for putting up with it for now.

  2. I’m not exactly sure where you’re getting that it’s just you who seems to be having some of these issues… Your comments sound fairly typical, if not in the better side of experiences that I have personally experienced when my daughter was on it and from speaking to others who have used it. And the comment about the taping… I heard that one too every single time I called their helpline because, yet again, the cgm was having issues or throwing errors. I’m sorry but we were trained, I did troubleshooting, I tried different techniques that are illustrated on the medtronic website and still had problems. Perhaps if the tape has to be “just so” for it to work properly, they should work on a better design for actual people to wear and not a statue who never moves, or bathes, or sweats, or sleeps, or lives life. Our experience and my thoughts were very similar to yours… I wanted it to make diabetes less intrusive in our lives, and instead it made it more intrusive and that wasn’t okay. We ultimately ended up with my daughter using her revel and has been on the Dexcom since January. As you know, the Dexcom doesn’t even require official training, you just pretty much stick it on, insert and you’re good to go. Maybe you throw some tape one hen the edges start peeling. The longest we got out of any elite sensors was 5 days before it was either horribly inaccurate or flat out failed. We’ve not gotten less than 10 days out of any Dexcom sensor (shh!)

  3. Could the slight tick up in a1c be a sign that you are not going low as much? Those lows bring down the average BG so correcting sooner (and maybe over correcting as you say) is cutting this evil lows out of the pure math of and average. Best wished for ongoing success. LYMI.

    BD

    1. I’m hoping that might be the case.

      1. Nice positive spin!

      2. My a1c is about the same as pre CGM a year ago. I am in the same range. Sometimes that gets me down. But then I remember how many lows and highs were probably averaging out … Now my spikes are not as dramatic and my lows are caught much quicker. My bit of retinopathy got better over the last year and I hope that reflects the tighter range. It’s sad that I have heard t1’s admit that when they have a low they can’t help but think it is good for the A1C! Overall I have found the entire helpful but do find I sometimes over correct for highs bc I am watching the CGM and getting inpatient when it is Not coming down.

  4. I was thinking maybe the uptick in A1c is due to the added stress, but really, I have no way of knowing for sure. I wish I had some grand advice. Instead, I just have thanks to you for sharing your experience.

  5. You know what? I haven’t used a Medtronic. I just redid my Ping. So, I probably won’t use a Medtronic Pump anytime soon – BUT. When people like you take the time to write so thoroughly about your experiences – the good, the bad and the ugly – it helps all of us. Thank you!

  6. Great post. Medtronic markets this advancement as the biggest and best thing in diabetes technology (“first breakthrough in artificial pancreas technology”, they say). To me, to be such a “breakthrough” it should substantially reduce the burden of managing t1d and not add to it. It’s helpful to learn whether or not customers agree. Thanks for sharing your story.

  7. I was just about to start typing my response when my sensor – which I put in an hour ago – because I yanked the previous one because it only accurately indicated BGs in the 90-120 range (missing a few 50s by a long shot) – alerted me to a “Sensor Error”.

    This morning, I was completely pissed off at Enlite after being completely in love with it for the week prior. And when this new sensor gave me an ISIG right after insertion (and up until aforementioned Sensor Error), unlike the previous one, I was confident in it, and started to love it again. Now I’m not. And I’m already three or four sensors “ahead of schedule”.

    Like you, I really want to love Enlite. I really do. But the key to the whole thing – the phrase that encapsulates everything about Enlite – is in your words “when the accuracy of the Enlite sensor is working correctly”. When it doesn’t work correctly, I struggle to understand whether to blame Enlite or to blame myself – the process is so damn complex, and usually complexity doesn’t phase me one bit. But if the tape isn’t right, or if the insertion site isn’t right (not many choices for me to begin with), or the calibration isn’t right, then it all goes to hell.

    I can give you my trick for getting past the first calibration which may be poorly timed (how would you know?), but do we really need more tips and tricks and workarounds? My friends who use the competitor’s product don’t seem to have any of these types of problems. But then, my friends who use the competitor’s product have to carry around a separate device and don’t have a Threshold Suspend.

    It makes my head spin. And sometimes I think it’s not worth the frustration … even if I can figure out how to get the damn thing to work right.

    1. And now that I read the other comments, I realized I forgot to put the “over tape” between the flappy transmitter tape and the cover-everything tape. Dammit!

      1. Argh. Too many steps…

  8. I miss my Medtronic 523 pump, but I will never use a Medtronic sensor again unless they switch their science/technology/whatever. Given the direction that Medtronic has gone, that might mean that I never use a Medtronic pump again. I used the SofSensor for about 2-1/2 years. Sometimes it was accurate, but there was no magic button that proclaimed that today I am accurate even though I wasn’t yesterday and won’t be tomorrow. Maybe I taped it wrong, maybe I calibrated wrong when the ISIG was this or that, maybe my BG wasn’t stable between 80-120 all day. I went to an Ivy League School, have an MBA and a Masters in Hospital Administration, and am considered to be a compliant, motivated patient with Type 1. If I can’t get this thing to work, who is the target audience?

    A CGM that you don’t trust is no better than no CGM at all. My Dexcom G4 is not perfect, but most of the time it is in the ballpark and most of the time the trends are spot-on. I break the rules often and dose insulin based on G4 numbers. I have never gotten into trouble doing so.

    Medtronic is the master of software integrating the CGM into the pump. I miss Carelink and I miss the information that was available in my 523 pump. Dexcom software is klutzy and I live with graphs when I’d really like some real-live numbers. I hate my Animas pump although I optimistically think that the Vibe will correct many of the things I hate. But at more than a year at the FDA, the Vibe is losing my faith and I wonder if we’ll ever see it in the USA. Even if we do, it is growing outdated day-by-day as we continue to wait for it.

    I am probably the only person who has had a Medtronic pump go out of warranty without ever being contacted by Medtronic to upgrade to a new pump. If I hadn’t been approaching Medicare age and wanted to hurry to buy a pump in November 2012 so that I could get one more before age 65, I would probably still be using my 523 pump. I dismissed Tandem for several reasons, but have regretted that decision ever since.

    Diabetes technology makes my life better, but it is frustrating and definitely sub-par. The FDA approval process ensures that we get out-of-date technology at hugely inflated prices. I don’t think that anyone involved in this approval process has ever given thought to how dangerous a drug insulin is and how many mistakes we make with syringes and dosing with the wrong insulins. It’s a wonder that we are allowed to use any of this stuff at all.

    Thanks for your review, Christel. I’ll get off my soapbox now:-)

    1. No — please, Laddie, get back on your soapbox and preach on! Like a good book, your assessment of the diabetes-tech world left me wanting more. And all this input from everyone (not just in this discussion) paints a much clearer picture of what my path forward should be.

      Regarding your comment about FDA approval of the Vibe, I understand your hesitation. We waited and hoped for FDA to approve Enlite, and when they did it turned out to be disappointing. If the products don’t sail through the process, maybe there’s a reason – and maybe I’ve underestimated the FDA all along.

      I’m sorry for hijacking your comment thread, Christel. Now back to you…

    2. “A CGM that you don’t trust is no better than no CGM at all.” Right!

  9. Why is my imaginary dream combo of Asante Snap (or T-slim) w. a la carte Dexcom not more popular?

  10. I am new to your post, and this is the first time I’m posting about my Type I diabetes. I have been diabetic for 32 years. I made the horrible mistake of ordering the 530G pump without checking the online reviews first. I already had a Medtronic pump and I liked the idea of using only one device, whereas with Dexcom I would have had to carry 2 devices. I have started to think of myself as “The Bionic Woman” ( am I dating myself?) with all of the machinery I’m wearing!

    I was trained on the 530G CGM 4 weeks ago, and it hasn’t worked at all. In all of that time, I had maybe 3 half-day periods of accurate blood sugar numbers (give or take 20 points) and the rest of the time the blood sugars on the CGM have been completely inaccurate, or I haven’t worn it at all since I feel that it’s useless. I’m so devastated that I hadn’t thought to research more before I ordered it, and I’m disappointed because I had high hopes for having a better quality of life with this device. This past weekend I started looking online to see if anyone else has had my bad experience, and I found this wonderful blog, so now I’m a member of your club!

    What bothers me the most is that Medtronic has sold the public something that doesn’t do what it says it does. Breach of contract. In all other industries, if a customer buys a product and it doesn’t work in any practical way, then the vendor must take the product back and provide a refund. Does it work that way with medical devices? I don’t want mine anymore and I want Medtronic to take it back. My health insurance covered it, and if I now decide to order the Dexcom CGM, the insurance won’t cover it because they already covered the 530G. I plan to speak with my health insurance company about it today. Thanks everybody.

    1. Hannah,
      I hope that Medtronic will work with you to return the pump and allow you to pursue the insulin pump therapy that you want. I was under the impression that there is a 30 day return policy, but then again, I may be in error. I would call Medtronic directly as soon as possible in conjunction with your insurance company.
      (And welcome to the blog – and the diabetes online community – we’re glad you’re here!)

      1. I took your advice and called Medtronic about returning the transmitter and pump, and you were correct that I can return everything and get my old pump back (plus refund of $400 that I paid to upgrade to 530G). I am a few days out of the 30-day return period, but they said that the return will probably be approved. I was under the misconception that you couldn’t return the product if it had been opened. Otherwise, I would have called 2 weeks ago! What a relief! I’m so glad I got up my nerve to post on this blog. I got the information I needed, and thank you so much for your advice.

        1. Another happy participant in the DOC!

    2. I was going to say just what Christel did. My daughter did the enlite back in November adn we had a terrible time with it and we returned it just before the 30 days was up, with no issue. They actually even offered to let us extend the return period to 60 days to continue trying to get it to work, but we were both so fed up that I said “No, just take it back!” I ordered the Dexcom a couple weeks later and insurance approved and paid with no problems. I did call them ahead of time though to make sure it would be okay. They said that once they confirmed with medtronic that we had indeed returned the other system that it wouldn’t be an issue. My daughter has successfully been on the dexcom since January and we love it so much!

  11. Hi
    I emailed about the issue of the 530g and elite/Mac issue. I had it running for a few days a Java update came and now I cannot upload to Carelink. I went to Safari, Develop and to Safari 6.1, it does not read it. I put care link into the security settings for java and thought that would help but it still doesn’t!
    Does anyone have any solutions to this? What good is this pump if you can’t upload anything??
    thanks…I love this blog and find it very useful…I know I am not alone!
    Joanne

    1. Joanne, I would start by calling Medtronic and talk with their software/Carelink people. Although I now use a Ping, I always had good luck talking with the Medtronic techies to get Carelink working. Another place to get help would be in the Medtronic Group at TuDiabetes. There are some very knowledgeable people there. http://www.tudiabetes.org/group/minimedparadigmusers

  12. This got posted over a month ago, but I thought I’d chip in one more voice… I’m a long-time T1D on the 530G with Enlite and I have never been so disappointed in a Minimed product. As you noted in the article, Medtronic has mostly fantastic customer support and when it was time to upgrade my Paradigm pump, I was really excited to try the improved CGM. It is wildly inaccurate and I’m sitting here typing through a fog because it had another of its “Threshhold Suspend” hissy fits all night long last night. After alerting about an oncoming low (legitimate) which I treated and fixed, it continued to turn my pump off ALL NIGHT LONG even though my actual blood glucose was in the 90-120’s when I ran meter tests. After the CGM values suspended my insulin delivery 7 times last night, I just switched the entire sensor off. I agree with Laddie’s comments except I would go a step further — a CGM you can’t trust is WORSE than no CGM at all. Heaven forbid I actually ever used these values to correct my blood sugar. And what if I’d slept through the threshhold suspend alarms somehow? I already woke up over 200 this morning from treating “lows” (90-100 blood sugars) that weren’t really lows just so I could try to get some sleep!! If I’d gone half the night with suspended insulin, that number would have been much higher.

    1. Hi Jennifer
      I NEVER, NEVER, NEVER treat the CGM numbers, I always test my sugar when I get those alerts.
      You might want to try doing a Temporary Basal for about 2 hours. I do that and it seems to work for me. I set it for 2 hours then set it to 50%.
      I have had many threshold suspends also for unknown reasons.
      Good Luck and try the temporary basal. I also do that when I am a little lower than I should be at bedtime to help me get through without alarms and low numbers.
      Joanne

  13. […] people prefer an integrated CGM and insulin pump. I tried it.  I’ve come to realize that I’m a Dexcom chick, tried and true. The other pump company […]

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