My goals are
- To help you figure this out, and
- To come up with an idea you haven’t thought of yet!
I’m not sure which is the larger challenge🤪…
Too funny! LOL.
Sometimes I’ve been accused of over thinking things! And doing too much research…
I appreciate every suggestion, believe me!! I’ve read a lot about T1 but you (and all the others with suggestions and support on here) are living it!!
Thank you!!!
You and me both! I’m sure you can relate to this as well🤣. Let me get back on track before I get dinged by the moderators for venturing OT - I do that every now and then…
Me! For sure! And I read everything!
Hi there - I’m baaaack! I’m just wondering, when you got your alerts what was the CGM reading? What did you do in response to the alerts? I have Dexcom and have never used Medtronic’s CGM but I understand those need to be calibrated frequently.
One thing that has been shared on the forum about trend arrows - at least Dexcom’s - is not to respond to them too quickly. You may be 100 with an arrow or arrows trending up or down, but you’re still 100 at the time. Iit’s possible the rapid rise or fall you see will level off, with no longer a prediction that you will go high or low; so it’s recommended not to take corrective measures too quickly. I think I’ve read - from user experiences, not official medical advice - that you should check one or two more readings before acting. - unless of course you “feel a certain way” or have done a fingerstick.
BTW - are you familiar with Juicebox podcasts? The are not intended as medical advice but provide tips on living with diabetes and give education in some devices. There are even some podcasts on diabetes and cancer - I haven’t listened to them but you might find some treasures. Here’s a link to an episode about someone with diabetes and cancer.
I have reached the point that I NEVER trust my cgm. If it alerts that I’m low I always do a fingerstick. Usually I’m not anywhere near as low as the cgm says. There have been days I’ve had to do 10 fingersticks-makes me say, “what’s the point of this cgm”! If I am low I use glucose tabs but have figured out I shouldn’t take 15 grams at once. And I do wait at least 15 minutes before taking any more.
I wasn’t aware of that podcast-thank you for that. I do watch a lot of YouTube videos about T1 but none of them have to do with cancer.
My new mantra - I will get through this!!
I’ve read that Medtronic’s CGM is much less reliable than Dexcom although I thought the latest version was an improvement. I think part of the reason for the issues you are having is that your pump is adjusting based on the CGM readings - which may be way off. I’m assuming Medtronic pumps allow you to operate in manual mode - where you make your own adjustments and corrections. Assuming the pump does have that option you could stop using Medtronic’s sensors completely and go with fingersticks - or you could see if Dexcom or Freestyle CGMs are more accurate for you, in which case you could use them for readings and plug those into your pump. Or if course there are fingersticks.
Something to discuss at your next meeting.
When I was diagnosed last November I used Freestyle, fingersticks and injections. I think if the hospital hadn’t been so aggressive with the insulin doses I’d have been okay.
Just in April I had 5 sensor failures with this Guardian 4 sensor! I was down to 2 senors until June 20th. I raised the roof when I called Medtronic- I was still waiting for the 5 replacements I had ordered in February and March!! Low and behold, those showed up yesterday!
I found out Thursday that my thyroid is corrected with the meds and I’ve lost about 14 pounds, thinking that may figure into all of this too??
Well, my pump is vibrating and beeping - telling me I’ve gone low! Better do my 5th fingerstick of the day!!
Did the Freestyle work for you?
Changes in weight can change your insulin needs as well. Another factor to add to the mix. 
Pump(sensor) said I was 74 - fingerstick said 113…go figure. I’m going with the fingerstick- I feel good.
The Freestyle always lasted the full time and seemed to be a lot closer to my fingersticks than this freakin’ thing!
I see my diabetes “educator” on Wednesday- she’s going to get an ear full!! Hopefully she’ll change things given my thyroid and weight change info.
As you prepare to see your “educator” I thought I would share a few more thoughts:
Pumps are marvelous tools - in my opinion a very close second to CGMs. - so it’s not surprising that doctors often seem to want new patients to start on one almost right away.
That said though, many people do fine or maybe even better on injections, once the doses and protocols are figured out: I suspect those people may be more vigilant about eating if they need to inject each time, rather than programming a quick bolus every time they want a snack.
When starting on a pump I personally believe (in my decidedly non-medical opinion) that the patient should master the basics - using it in “manual” mode - before engaging a closed loop system such as the one you’re on: that includes knowing how to correct rising or falling numbers; and why, when and how to use temporary basal rates, among other things. If your sensors don’t arrive, the CGM brand you use doesn’t work with your body, or your pump’s algorithm is too aggressive or not aggressive enough - knowing how to “go manual” is invaluable.
Then there’s the understanding of programming. A loop should work beautifully for a motivated user if the features are set correctly, and so long as they understand how to use them. In addition to the basic features of basal rates and carb ratios - which may vary throughout the day and need to be updated from time to time - there are background settings that factor into corrections, such as insulin sensitivity and insulin duration, that are touched far less often. If these are not right, the insulin adjustments made in auto mode (with the loop “on”) can be, well, wacky. In manual mode, on the other hand, your basal insulin rates remain steady unless you change them, which can give you a greater feeling of control.
All of which is to say (you’re thinking * Oh thank God she’s finally getting to the point!*) you do have options.
If you say you are so dissatisfied that you want to go back to injections, that might give your trainer the kick needed to take a deep dive into your settings. You may or may not even want to be bothered, but if you are willing to stay on the pump with some adjustments you could see how manual mode works for you - since Medtronic’s sensors aren’t accurate for you, you won’t be able to use loop).
Whatever your choice your educator and doctor should respect it, and give you the tools and dosing information you need to make the switch. Be sure to have a plan for injections in place whatever you do - even if you continue pumping it’s good to to have one as a backup, or if you ever want to take a pump break. The plan should include directions for when to stop and start so your pump insulin and injection insulin don’t overlap.
I’m tagging @Dennis and @joe here. Both are amazing analysts and might have some thoughts to share, corrections or differing views from mine.
Yeah, I have lots of back up pens - both long lasting and fast acting. I get them every month, keep them in the fridge and take them with me if I’m going to be away from home. Clisest expiration is next summer.
I guess I just have to admit I don’t fully understand this pump thing. No one ever explained manual mode to me and even though I’ve read and read about it I still don’t get it (chemo brain kicking in? LOL).
I do intend to question my educator about going back to injections, I was way more comfortable with them. And on top of that I just got a bill from my supplier for 5 months!! When they signed me up for this pump in December I specifically asked how much it would cost me - they said nothing, my insurance would pay for everything. Now they waited 5 month and want $550.00!! Which I don’t have. Geez, this is more trouble than it’s worth…
thanks @wadawabbit ,
hello @boothompson I am sorry I didn’t welcome you to the forum earlier - I hope you are okay.
a few words on CGM. CGM does not measure blood sugar. A CGM measures a phenomena in interstitial fluid which is “correlated” to blood sugar. in general, the CGM reading is very accurate to the phenomena occurring in the interstitial fluid.
Interstitial fluid is subject to body chemistry, so for example if you are a little dehydrated or if you are taking medications that can make you dehydrated or if there is physical pressure or you are leaning or pressing on the part of the body where your CGM is located it can substantially change the fluid, locally, and give you a number that does not make sense.
On a good day - CGM is telling you what your blood sugar was about 15 minutes ago. The reason for the delay is the interstitial fluid changes slowly to changes in dissolved blood sugar. This can drive you crazy and make for BIG differences between CGM and a finger stick. I personally will not calibrate my CGM if my blood sugar is above 150 and I will try to NEVER calibrate if my blood sugar is changing. (if I see that arrow is anything by pointing directly flat)
A few words on blood sugar variations and the age-old “I do the same thing every day and get different results”. There are SO MANY possible reasons why you didn’t do the same thing. For me, stress can change my insulin resistance by 25%. If I am stressed out, angry, driving in New Jersey, on an airplane, in a long coffee line, listening to the SAME advertisement for the 2913476th time, my insulin resistance goes up, which presents as high blood sugar or a need for much more insulin. My blood sugar drops dramatically when I do yoga… not because of the physical activity, but because it reduces my stress level.
Activity - now that I went ahead and mentioned it. If I am at my desk or on meetings and I have the same relative stress… activity levels can change my insulin requirement by 50-100%. If I so much as take a walk, I can cut my insulin requirement for a meal by 50%. If I am going to ride my bicycle… then even more I might take 1 unit for over over 70 grams of carbs. For reference, when I am stressed and seated I need 1 unit for 9 grams of carbs. So I am extremely sensitive to movement even walking, or using the stairs more. It can change everything.
Magic of fat. fat is like a 900 level course in T1 management. it fascinated me as to why pizza, clearly and even with a digital scale i’ve calculated the carbs in a particular slice to 37 grams (2 decimal accuracy) but why oh why do I need insulin for over 70 grams carbs? and if I take this insulin all at once then WHY do I go low and then I am high for 5 hours afterwards? answer: fat.
I’ve heard a lot of explanations as to why but the one I like the best is that fat causes temporary insulin resistance. This resistance requires me to take more insulin for this (relatively) fatty meal, but then it causes me to need more basal insulin for up to 5 hours afterwards. Different fats cause different levels of resistance so for me: milk fat, olive oil, and beef fat make the biggest change. Since I know about it, I can take the appropriate insulin, or even better, I can put that fattier meal at lunch time when I am way more likely to be active (see the above paragraph) and the fat issue affects me less or not at all.
“trusting a CGM or a finger stick”. bad news, both are inaccurate, sometimes alarmingly so. the premise that I am going to take a whole blood finger stick (potentially inaccurate by 12-20% of the displayed reading) (in other words if my finger stick says 190 mg/dl my real blood sugar is likely to actually be 161 to 219 mg/dl!!!) and use it to calibrate another device measuring interstitial fluid and 15-20 minutes behind reality? Well. IMO, it’s no wonder why people have trouble with this. If I have to calibrate, I make sure it is during fasting and when my finger stick is stable and under 140 mg/dl.
synthroid. you need it if you don’t make thyroid. too little is bad and too much is bad. the kick in the tush is the more synthroid you take the more insulin you need. it’s like trying to balance a ball in a box without seeing it. the good news? it’s a pill a day and if you are careful and take it on an empty stomach and avoid tums, chances are you can get the right dose in 6 months.
okay - that’s all I got for now please feel free to ask more or tell me to shut up. 
Thanks for your response!
I do get the difference between cgms and fingersticks, honest I do! 
My biggest thing is - I get short of breath when I’m over 170- 175. The higher I go the worse it gets. I start to shake, sweat and get dizzy. My pump (cgm) might show 140, it might show 180. I do a fingerstick and I’m usually 175 or higher with up arrows. That’s why I believe my fingersticks over this cgm. Does that make any sense?!?
My thyroid died at the same time my pancreas did - last November- both due to the Keytruda I take for my cancer. Last Thursday I had a treatment and my oncologist informed me that my thyroid levels are back to normal. (And my MRI shows no new brain lesions!!)
I am a freak about what I eat! I trim every bit of fat, cook with “healthy” fats, rinse hamburger and sausage meats. If I eat bacon or a sausage patty I literally wring the meat in paper towels. I weigh and measure everything.
My exercise is pretty much the same everyday- I’m retired and because of my chemo brain I follow a pretty strict routine.
I feel like I have an excuse for everything but it’s all true! I’m so confused and frankly disgusted with it all. I handled my Stage 4 cancer diagnosis better than this. 
When I was first diagnosed and using injections I was low all the time - they finally realized they had me taking WAY too much insulin. Once they straightened that out I was doing well - then came the pump…
I guess that’s why I’m considering going back to injections.
Anyway - your input is very appreciated, please don’t hesitate to comment with any suggestions! This site - the people on it- are a Godsend!!
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@boothompson I am sorry to pry; Regarding your cancer treatment, Did you report this to your doctor? Do you know if they filed a report with the manufacturer?
Not prying at all - I’m very open about it! And yes I let him know and he reported it. In the clinical trials less than .01 % developed Type 1 diabetes! Leave it to me!
My oncologist is actually the one who got me in to the endocrinologist, he called their office and spoke directly to her. Now he’s trying to get me in sooner - October appointment right now.
I will also add - my diabetes “educator” seems only concerned with how long I’m “in range” - the highs - even over 300 - don’t seem to bother her.
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Oh what I would give to be a fly on the wall at your appointment on Tuesday. I imagine you will let us know later how things go.
She may not be thrilled about the questions you might ask, and wonder where you got your new-found knowledge. The people who have responded have more than 100 cumulative years living with diabetes. The diabetes professionals I’ve dealt with have been very knowledgeable with book learning, and respectful enough to take their patients feelings and tell life experience into account in teaching us to apply it. So if your educator blows off your highs, ask her “How would you feel if you were in range 80% of the time [or whatever]. - but 20% of the time you couldn’t breathe???”
I was once given a tip of use with pushy salespeople and this kind of fits the bill - keep repeating the same thing over and over: let’s say you want to use Freestyle as your CGM again and she insists you stick the Medtronic, just say “Medtronic doesn’t work for me.”
Her: But it’s the only one that works with your pump.
You: “Medtronic doesn’t work for me.”
Her: “Maybe you’re not calibrating enough.”
You: “Medtronic doesn’t work for me.”
The key is not be a broken record and not get sidelined buy their sales tactics.
Right now is a good example of what I go through…
Noontime, lunch - SG 163, have .5 active insulin on board. I’m having a grilled cheese on rye bread - something I frequently eat- 30 grams of carbs. Bolus Wizard gives me 2.8 units of insulin. I’m now at 201 and sucking air, light headed, sweaty and have a headache.
IF, as my “educator” claims, this setup will keep me in my target range (100-120) WHY am I at 201 with an up arrow??!!
My glucose numbers can be close to the same at any given meal time, I can eat the exact same thing, exact same exercise (or lack of!!), and my glucose can stay level, drop to the 60’s or shoot up. I keep avery detailed journal- absolutely nothing adds up.
I decided I am going to be THAT patient at my appointment- I need answers.
Again, to be a 
on the wall.
Another thought - I wonder if a different insulin might work for you? Humalog, Novolog and Admelog are interchangeable for many if not most people, but it’s possible the one you’re on doesn’t work for you. If your insurance doesn’t cover other options your doctor may be able to request an exception or waiver by giving an explanation.
Her assistant gave me a vial of…fiasp? Can’t remember the name without looking back at my journals. Didn’t seem to be much diffence. I just think there has to be something!!
I have a cousin whose best friend has been t1 since she was a teenager- 65 now. She keeps telling me I need to ditch this pump and go back to injections. She had a pump a few times, different ones, and she swears by shots.
Just gotta make it to October!!