Curious if anyone uses the Medtronic 780g. I’ve had mine for about four and a half months. I use the Smart Guard feature.
My glucose is often over 200, sometimes over 300. I keep a detailed journal and there is no pattern.
When my glucose goes over 170 I sweat, shake, get lightheaded and very short of breath. The person I see is of no help - goes into this long spiel about calibration and trending forward.
Anyone have any suggestions?
Thanks!
Have you called Medtronic support?
Hi @boothompson . I’m not a medical professional but from a layperson’s point of view your symptoms sound like ones associated with both low blood sugar (not the case) or panic attack. I wonder if you are panicking when your numbers are higher than you would like them to be? I’m not saying the problem is all in your head - panic attacks are very real, and learning how to manage them can make a huge difference, as can setting realistic goals for your numbers, if need be.
Just as important - if your medical practitioner is not listening to your concerns, look for another one.
If you don’t mind my asking, how long has it been since you were diagnosed with Type1?
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PS - can you operate the 780G in manual mode - that is, turn off the closed loop so you make corrections on your own? Doing that is counterintuitive, I know, but I find that sometimes works better for me, and it might help you see some patterns🤞🏾.
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Not yet because the assistant to the person I see is a Medtronic trainer. They were supposed to get back to me- days ago.
I don’t think I’m having a panic attack. I can be reading a book and suddenly feel awful - sweating, shaky and short of breath. I check my pump and do a fingerstick- I’m high (over 170 for me).
If I get to 200 I “fake” carbs to get more insulin. The person I see has a fit, tells me I cannot do that. Maybe not but I sure can’t continue this way.
I was diagnosed last November. My husband had to call an ambulance. When I got there my glucose was over 800!!
I have Stage 4 metastic lung cancer and have been undergoing treatment for a year. I’m currently taking Keytruda- the consensus is the Keytruda has killed my pancreas (along with my thyroid). The good news is it’s killing the cancer!
I have an appointment with an endocrinologist- in October!
Thanks for your input - I appreciate it!!
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Regarding faking carbs (or taking a manual correction): do you find yourself going low later? That typically happens with me if I get impatient and add on insulin rather than letting the pump dose on its own (called “stacking insulin”). If you’re doing it because your loop is not correcting as efficiently as you want, it could have to do with the background settings of your pump, which you should adjust along with your doctor right now. I believe trainers are assigned to regions or areas, so while the one you see is the assistant to your physician, they may cover other offices as well. It can be difficult getting an appointment, but if it were me I would see if I could find a new doctor who could see me before October. I may be preaching to the choir and you’ve already been searching, but I thought it was worth mentioning.
Please keep us posted on how things are going.
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I rarely go below 80 anymore. I too believe my background stuff needs adjustment but the person I see keeps saying “lows are worse than highs”. Well not when I’m gasping for air!
My oncologist is the one who got me in to the endocrinologist in October. I live in rural Maine - all doctors are in short supply here. I even told my primary I’d travel anywhere in the state - haven’t heard a thing.
Elizabeth @boothompson, you have more than diabetes working against you and interfering with your effective management of your glucose, factors that could be a cause for some of your unexplained glucose levels.
Note that I’m not a medical provider and that I didn’t select the MiniMed 780G with SmartGuard following personal investigation and strong consideration; I had followed the University’s development of the algorithm for a couple of years. Secondly, and this is only my conclusion from what you share with us is, that you do not have Autoimmune Diabetes - these days abbreviated as TypeOne, T1D -
and falls alone into Classification ! of the several varieties of diabetes. I suggest that you more probably have one of the varieties of Classification !!! which embodies the diabetes forms brought about through the pancreas being disabled by medicines like Kemo therapy, chemical exposure, cancer of pancreas, etc. Your “good news” is that many Class 3 are managed almost exactly as T1D and that your medical providers should be aware that you will have some other forces with which to deal - stuff not well documented of understood.
Hopefully the Medtronic trainer and your doctor can help you feed into the 480G some settings that help; the might also gain insight by reading appropriate sections of The American Diabetes Association “Standard of Care for Professionals”.
Yes, I do have things that probably affect my glucose control but I sure can’t convince the diabetes person I see of it. She has never had anyone who became diabetic because of immunotherapy killing their pancreas and doesn’t seem to care. I went from a fasting glucose of 99 to over 800 in just 3 weeks!I sure hope the endo I’m scheduled to see in October is better!
I knew nothing about insulin pumps back in December. Normally I research things to the point of ridiculous! 
For some reason I didn’t this. I think I was happier with the 4 shots a day! I certainly seemed to have better control…
Thanks for your input, I appreciate it!
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What about going back on injections at least until you can see an endo who is willing to listen to your concerns (if not permanently)?
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I’m giving that serious consideration!
The 780 keeps track of insulin on board and if your sugar is super high and you don’t think there’s enough insulin, you can can bolus and not put phantom carbs. It will look at the readings, the insulin on board and bolus accordingly. Mostly I find it works best playing honest.
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That’s the way it’s supposed to work but I can’t bolus without faking carbs. I’m beginning to think my settings are not right. I don’t know- I’m just trying to make it to October when I can see an actual doctor. 
As an aside (moderators please forgive me) - while it won’t answer your specific question I highly recommend you check out the book Think Like a Pancreas by Gary Scheiner. He has Type1 diabetes and works in the field so has a unique personal perspective that is particularly helpful. I read it for the first time a couple of years ago and learned some new things even though I’ve been diabetic for 60 years! It’s a great supplement to diabetes education - or perhaps I should say the education I hope you received when you were first diagnosed,
Have you spoken with your oncologist about your symptoms? We tend to think everything that happens to our body is related to diabetes, but sometimes the culprit is something totally separate. I took the liberty of looking up side effects of Keytruda and some were similar or identical to the the symptoms you describe. Of note, from Side Effects of KEYTRUDA® (pembrolizumab)
Call or see your health care provider right away for any new or worsening signs or symptoms, which may include:
** Chest pain, irregular heartbeat, shortness of breath, swelling of ankles*
and
Infusion reactions that can sometimes be severe or life-threatening.
Signs and symptoms of infusion reactions may include:
- Chills or shaking
- Itching or rash
- Flushing
- Shortness of breath or wheezing
- Dizziness
- Feeling like passing out
- Fever
- Back pain
Thankfully the medication is fighting the cancer, but If it is also causing your symptoms a dosage change may be in order, or there may be medications that can counteract those effects.
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Yes! I have Think Like a Pancreas! Very insightful book.
My oncologist knows about my symptoms- I see him every 3 weeks for treatment and he does very extensive blood work. He’s the one who got me the appointment with an endocrinologist.
We don’t think my symptoms are caused by the immunotherapy because I only have them when my glucose is high and I never had any symptoms until my glucose went crazy. I also don’t have chest pain or swollen ankles.
It’s nuts but I trust my oncologist more than the person I see for diabetes. And probably more than my primary at this point.
Thank you so much for your input (and your research!!).
There’s nothing nuts about that. Your oncologist listens to you and respects your feelings, while your others do not. You’re always at least one step ahead of me but do you think your oncologist might be able to get you in with another endo? Professional sometimes works when patient efforts do not.
My oncologist got me in to the October appointment. He actually picked up the phone and called “doctor to doctor”! Something my primary did not do.
The person I’m currently seeing found out I’m going to go to an endo and said, "No hard feelings if that’s what you want. " You’d think she would want the best for me given my circumstances.
I’m located in rural Maine- terrible shortages of all doctors but especially endos. The office I’m going to go to is 45 miles away. They used to have 6 doctors- now only 2.
Crazy 
.
But my oncologist is the best! I travel 85 miles, one way, every 3 weeks to see him and get my treatments. Thankfully the cancer center gives me gas cards!!
I turn Smartguard off for meals and do a dual bolus for 2 hours. That was what I was doing before the 780G so my endo suggested to go back to that after I had worked with the local Medtronic nurse. I need way too many carbs for meals and the pump doesnt want to allow that. It works great for me other than mealtimes. So I am in Smartguard for 84% of the day. I am not a doctor but if you have worked with the Medtronic local expert and cant get it to work right, I would suggest working with your doctor, if they understand the pump. I was in range 98% of the time last week so I know my body better than the algorithym.
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Thanks for your input.
I won’t be able to see an endocrinologist until October. My primary is clueless and it sure seems like the person I’m currently seeing is clueless as well.
I get high numbers at very random times - not just after meals. But yesterday I had lows -56 to 70 - I haven’t had lows like that in months. There’s no rhyme nor reason to any of this!!
I have a feeling the fact I have cancer, my thyroid is wacky and I’m on immunotherapy has a lot to do with the crazy numbers.
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