That could be a factor but you should really see someone sooner. You can make changes yourself also but that is hard with no rhyme or reason. Have you tried keeping your carbs more simple like just a slice of bread instead of rice and potatoes and any prepared foods? That would help with establishing a solid carb ratio. Your brain and your cancer I think are likely what is causing irregular stress also
Hi. Have you ruled out thyroid issues? The thyroid controls metabolism and Thyroid: What It Is, Function & Problems says Your thyroid’s main job is to control the speed of your metabolism (metabolic rate), which is the process of how your body transforms the food you consume into energy. All of the cells in your body need energy to function.
… and it’s not unusual for persons with diabetes to develop thyroid problems, although diabetes does not cause them per se. I don’t know that it is fair to say thyroid disorders can be easy to treat but I have taken medication for hypothyroid for many years and it works well. My doctor checks my levels every 3 or 4 months - before my visit.
PS - I just started with a new primary care physician and she ordered a complete blood count (CBC) to get a baseline. If you haven’t had one that might provide some direction (in clutching at straws but you never know…)
Oh if it were only that easy! 
I currently see a nurse practioner for my diabetes- she’s about as useless as the day is long. My primary thinks she’s wonderful.
I’ve repeatedly asked her about the effects my cancer, dead thyroid and immunotherapy might have on the lack of control. She waves her hand at me and says, I’ve been at this for years. When she found out my oncologist got me in to see an endocrinologist (October!) she was miffed!
I live in rural central Maine and doctors are few and far between. Doctors don’t seem to stay long around here. The endo I’m going to see is 45 miles away, close by rural standards. I travel 85 miles, one way, every 3 weeks for my cancer treatments.
Yeah, my thyroid is dead. Seems the Keytruda killed that along with my pancreas and the cancer! My oncologist has me on thyroid meds and my numbers are getting better- I get complete blood work every 3 weeks when I go for my treatments.
I keep saying It could be worse! Keytruda is killing the cancer!!
My biggest complaints are this pump and the lack of concern from the person I’m currently seeing. She’s the one who told me Smart Guard would automatically give me the amount of insulin I need so I wouldn’t go so high (provided I entered carbs at meals). I asked her how I could be at 300 and Smart Guard does nothing- she gave me a long blah blah blah about trends!
Oh well, it is what it is and I’ll just hang in until October!! I really appreciate everyone on here trying to help me!
Thanks so much!!
Wow. I am truly stunned. I’m in DC where I would say diabetes specialists are plentiful and the challenge might be finding one who accepts your insurance.
If you haven’t done so yet I suggest you contact Medtronic and let them know how dissatisfied you are with their trainer: you might start by calling the help line and asking some of the things you have brought to your trainer’s attention (“Are there any background settings that might help with my highs?” “The corrections aren’t working - is there a manual mode I can use and make corrections myself?” etc. They will reply that you need to discuss those things with your trainer, at which point you can tell them you already have, and what they told you. That would document the issues in their system and I would think would escalate you to a manager whose job it is to address your concerns, hopefully to include finding a different trainer. Technical support lines should be open 24/7 and I suggest calling today rather than waiting until Monday, to add to the sense of urgency.
I said previously that I thought trainers were assigned by area, but if one is incompetent, brushes you aside and does not try to ensure you understand the device or address your concerns, they may assign someone else in the interest of their own success and safety, as well as yours. And since the success of your pump depends on the doctor as well, they may have some sway in getting you in to see someone - that’s what I am hoping anyway…
I think I will have to call Medtronic. Unfortunately the person I’m seeing is the only one in this area. I already had one place (45 miles away) decline to see me because I’m “aready with someone”.
Health care here is an absolute challenge.
Trainers work for the company so Medtronic should be able to sign l assign someone else to you, even though you already have somebody. In-person might be preferable for you, but since you do have some background they might be able to set something up remotely.
When I switched to Omnipod I did my rep training online - I think via Zoom. I would say (IMHO) that the in-person part is mainly to show how to teach you the mechanics of the pump and load and insert your infusion sets, so they may be able to walk you through background settings and answer some questions that way. I’ve even done some things over the phone.
Once you’ve documented your experience with customer service they should tell you what action they will take. They won’t be able to answer your questions but they should be willing to escalate to a higher level. Don’t take “no” for an answer - remind them that they have a responsibility to ensure you are suitably trained in their medical device, and despite your best efforts you have not gotten that yet so your health may be at risk.
This whole pump thing happened so fast! Went to the ER on November 11th, got sent home on the 14th with shots and directions that actually overdosed me on insulin. Got the pump on December 27th. Had no training on it until I got home and watched Medtronic videos. I’ve seen the diabetes person twice since December. I’ve tried calling and emailing her but she never actually answers my questions- just rambles about trends and how fingersticks are different from the CGM.
She also keeps telling me that I’m stressed because I have cancer. I told her no, I’ve been dealing with my cancer diagnosis for a year, the treatments are working- my oncologist said we’re looking at a miracle. But she keeps harping on it.
I go back to her in 2 weeks- it will be an interesting appointment!
Hi again and good morning.
I hope your call to Medtronic went/goes well.
At my quarterly visits my endo looks at my eyes, ears and throat; feels me up in ways my husband doesn’t😊 to check for enlarged glands and organs; and of course checks my weight, BP, temp and other vital signs. So if there are any upticks in my readings or anything starts to look out of order, we catch it early.
During COVID my endo switched to mostly tele-health appointments: I had the tools at home to check my vitals, and while the hands-on exams are reassuring, I was fine not having them as frequently.
All that is to say - see if your endo (present or future) does tele-visits. They may want you to come in for your first few, but given your location and the scarcity of doctors in that area, they might offer that as an option, at least for some visits.
My goodness, you must be so frustrated. I started with my Medtronic 780 a couple of months ago. So, I can relate. Before this I used Medtronic 670 for years. I’ll just share my thoughts. I’m no professional. The best advice is from a doctor, preferably an Endocrinologist. If you can’t see an endocrinologist right away, can you see a Certified Diabetes Educator? My CDE is awesome. My first thought would be settings.
First of all, for 780 to keep your BG high is not normal. Mine did that when I first started treatment for a little while, but I discovered it was due to me not calibrating while my BG numbers were high. That meant the CGM was not getting my actual BG numbers. I was afraid the cgm would kick out or ignore a high BG, but it didn’t. So, I calibrate twice a day now. Once my cgm knew my real numbers, it took charge and brought my BG down. If the cgm is not close to finger stick numbers try to straighten that out with Medtronic. Check sensors, etc.
Next step I’d examine are the settings. The 780g’s normal setting is to keep you under 170. So, if it isn’t, there must be something like your Carb/insulin ratio or Sensitivity setting. You’ll need help adjusting these. I do mine on my own, but only after discussions with my endo team and years of experience with pumps. There are many factors to consider. But, if these numbers are set correctly, the 780 is amazing at bringing you to very tight TIR. I have been shocked at how it works so well. What it will struggle with is if the carbs are way higher than what is being reported. It can handle some underreporting of carbs, but not large ones.
Another thing to check out is infection. When you have an infection, there could be a much higher need for insulin the pump can’t meet. I’d consider asking your doctor to check blood work or urine for UTI, dental infection, inflammation, etc.
I hope you can figure this out. Please post your updates. I would be very interested in what is causing this issue. Take care.
I just thought of a couple more things to check out. How clear are your infusion sites? Make sure to use a fresh site. Overused sites may not absorb. Check insulin. I recently had to toss a vial out, though I had just opened it.
You report that you have had lows in 50s? The 780 is designed to stop insulin before that would happen. I can’t fathom how that would happen. Did you take insulin by hand injection?
Sadly, the person I’m currently seeing is a certified diabetes specialist! She constantly “talks down” to me which is very frustrating. I can’t get in to an endo until October.
I do fingersticks multiple times a day - often times the pump accepts it and then immediately returns to what it had! It frustrates me because the fingerstick is usually much higher and I really feel it - shaky, sweaty and short of breath.
When I ask my diabetes person about it she just goes on and on about trends and calibration. If my fingerstick says I’m 250 or higher, and I feel it, I think Smart Guard ought to do something about it. The only way it lets me dose any insulin is by “faking” carbs.
I’m a freak about carbs, etc. I measure, weigh, read every label. I still think my cancer, immunotherapy and thyroid are a huge part of the problem. Can’t seem to get that through to the diabetes person- she waves her hands at me and says she has done this for years.
My oncologist does extensive blood work every time I go for treatments- every 3 weeks.
Thanks for your input. I appreciate everyone on this site!!
Hi Boothompson, I have been a T1D for almost 55 years and I have been using insulin pumps for about 16-18 years. I got a 780G last August. I like it very much, but for me I would like it even better if the algorithm was more aggressive when my BG goes above 180. I will tell you what I do. I am not suggesting that anyone else should try this because I am not a professional of any kind. When my BG goes over 200 I check my BG and inter it into my pump. Then I go out of Smart Guard to Manual mode. I then reduce the recommended dosage by 40-50%, and take that amount of insulin. Then I go back into Smart Guard. I have found that takes my BG down much quicker than the Smart Guard algorithm. I have found from trial and error that I have to reduce the dosage or my BG will come down too fast and go low. All I can say is: I have found this idea works for me.
Thank you for the info!! I just may try that! I get SO short of breath whem my glucose goes over 170 - when it’s over 200 it’s almost unbearable.
Thanks again!!
I was not aware of this until I looked it up but shortness of breath can be a sign of diabetic ketoacidosis, or DKA. Are you testing for/treating ketones when this happens? There are urine and blood test strips you can use.
When I was taken to the ER last November my glucose was over 800!! And I was very short of breath. I was in DKA. I haven’t ever tested for ketones - no one has ever even mentioned it to me. I have been reading about it though. I’m not sure if I can afford the test - guess I’d better do some research.
Thank you!!
You can get a vial with test strips - in my area a vial of 50 is a little less than $20.00 and it’s very low-tech: you pee on the strip then compare the resulting color to the chart on the vial. I got a blood test - similar to a BG meter - for around $40.00 on Amazon but the pee strips should be fine.
I’m surprised no one taught you about ketones in your diabetes education, although perhaps I should not be given what you have shared - so here is some information about them. You may hear about people following “keto diets” - the two are not the same and too many ketones for us can lead to a dangerous condition called diabetic ketoacidosis, which can be dangerous. Diabetic Ketoacidosis - Signs & Symptoms | ADA
I’m very concerned about your lack of knowledge about diabetes - not your fault of course - and I hate to think of you waiting another few months to see somebody. This may not be doable for you but if you can, check out the Joslin diabetes center. They’re in Boston (yes, a hike) but are one of the most highly regarded diabetes centers around. Given their size they may be able to take you much sooner and give you the learnings you need so you can manage at least until you see your new endo later this year. I hope you will contact them but of course it’s your choice. You don’t have to clear anything with your current endo, although depending on insurance you might need a referral from your primary care doctor.
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True about testing for DKA. Since you’ve had it, it should be easier to recognize. My endo had warned me, but I forgot and thought I had food poisoning. Ugh….extreme pain in legs, arms, stomach and off the charts nausea and vomiting. I was calling my primary who thought it was food poisoning too, until I said I had trouble breathing. She said go to ER pronto. I’d get ketone sticks and test.
Well I’ll be! Didn’t know there are pee strips!! Will definitely check those out.
I’m beginning to figure out that my diabetes training was pretty much nonexistent!
Thank you so much for all of your helpful information!!
Yeah, I was vomiting too. Along with shortness of breath and just feeling really bad.
Our Giant Schnauzer saved me! My husband had gone to our spare room to sleep so he wouldn’t bother me - Frankie went in there and kept jumping on him to wake him up. When my husband got up he realized I was in trouble and called an ambulance. My glucose was over 800!!
I’m determined to figure this out. Thanks so much for your input!!
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