This week I ended up in the ER via ambulance due to T1 hyperglycemia. What made it all so strange was that my body was behaving in a way I would describe as having mild epileptic tremors. It was also affecting my speech as well. I never became unconscious. My last A1c (within the last 7 days or so) was 6.3. Prior to this happening I was freaking out about high sugars that made no sense. Did a walk through with Medtronic to check my pump and nothing came of that. No fever, and during ER visit no infections or other causes for highs.
Some issues. I now see a PA for my endo care who obsesses constantly over lows, and is constantly setting and resetting basal rates in my pump. Meanwhile I obsess over the unexplained highs that refuse to budge, up to and including having to go the injection route to bring them down, only to later within the same 24 hours having them bounce back up. The highs I speak of here are in the 300s.
My question is have any of you gone through this? My management has been in the good to excellent category since my diagnosis 4 years ago (I am 66 now).
I have an anxiety disorder that also interferes with my sugars. My diet is vegetarian, I weigh about 119 pounds.
Will stop here, but would certainly appreciate any knowledge and/or advice you have.
I can tell you no one changes my pump but me! My newer endo that I have, at the first visit was looking at my pump and went to change something and I immediately spoke up and said please donât, Iâm the only one I want to change anything in my pump, I want to know what the settings are, itâs my life. Sheâs very nice and must of made a note in my chart about touching my pump as she has never even asked to look at it again. But I bring printouts of the settings to my appointments.
I do get unexplained highs off and on, normally if itâs more than a day there ends up maybe being an explanation like once it was an unknown tooth infection. I have an Omnipod and sometimes my numbers have stayed higher and I used to put up with it for a couple of days by taking extra adjustments. But nowadays I am more likely to switch out my site and my pod fairly quickly and that seems to usually take care of it. A couple of times Iâve switched out my insulin too if the problem goes into the new pod change and then that has solved it.
I know there was a story on here somewhere about someone getting DKA in the 180âs? I guess he wasnât used to those numbers and was surprised and wanted to let people know it could happen.
Iâm sure some people here will come in with some other suggestions, one I can think of is people sometimes have problems with certain cannulas? And it works better to switch to a different kind?
But Iâm really thinking it sounds like a pump absorption issue or not enough basal insulin if a shot works to bring it down and then it goes up? Because it is going up because you are not getting enough insulin. But it could be your basal rate is too low. Have you ever done a fasting basal test to know if your basals are set right? Because if youâve only had type 1 for 4 years, your honeymoon period could be ending and your requirement for insulin would go up. The honeymoon period is you still make insulin until you donât which can take up to 8 eight years to totally happen or 4âŚ
BTW, Iâm a vegan and Iâm 62. Iâve had type 1 for 16 years.
I love the suggestion to not allow anyone âmessâ with my pump. The nurse usually takes it to upload the dataâŚoften only two weeks worthâŚ2 weeks when I havenât been seen for 3 months? Over and over again I have to tell them they can do 4 weeks, but they can mess around with my pump based on 2 weeks of data. I now have access to a printer (did not before) and appreciate your suggestion to bring printouts of things. And you are absolutely right on, by the time the physician assistant gets done screwing around, I am often very much confused about my basal settingsâŚconsidering the self-management we all do, thatâs unacceptable.
Marie, thank you SOOO much for your thoughts and suggestions. Very helpful. As a relative newbie it means so much to get feedback from those with more experience. I have a physician friend, now retired, who I have been emailing with and he, too, is coaching me on what I can âdemandâ ⌠like you, he is very clear about that. Your fasting basal rate sounds incredibly usefulâŚit is the basal that my provider is constantly changing. Have tried new insulin in case that is the problem, changing sets, etc. My ER visit demonstrated there are no infections, no fevers, etc etc going on. Had very nominal ketones. All the tests they did came out very good, and that basically am quite healthy.
I am quite thin and sometimes finding good sites can be an issue, but I usually able to track that one down.
I also have a medical history of being quite sensitive to meds, and often need less than usually prescribed. In this case, it seems like I would notice if that was occurring (like in the early stages of my T1 âŚrequired less insulin than what is usually suggested in the ratios).
I thought my honeymoon period had past some time ago; interesting that you are suggesting perhaps it lasts longer than I understood?
I have shown up osteoperatic (sp?) in my left hipâŚit aches, especially at nightâŚhave learned the miracle of CBD oil for relief, most especially at night.
Anyway, will stop here for now. Thanks so much for your response! Gave me much food for thought.
big olâ hug from me
My honeymoon period was at least 5 years as I wasnât even put on insulin for about 5 years. I am one of those misdiagnosed for over 8 years people. (Until I switched doctors and they tested me)
Also our needs can vary, there is no wrong amount of insulin, it is whatever you need to stay in range. Donât listen to ratios, normal amounts etc, those are only starting points, it is whatever you need to keep your blood sugar at good levels.
Requiring less insulin as a type 1/LADA at onset totally makes sense, children normally go through the process pretty fast, but adults, it is usually very slow progressing.
I do not have a cgmâŚhave not wanted one more device to look after
wow, 5 years! How does one know for pityâs sake.
My pump is a 630G (Medtronic).
when I was diagnosed it was in the hospital. had lost almost all muscle mass weighed in at 100 lbs, and one sick puppy. I did drive myself to the hospital which was most unwise and dangerous for myself and others. But then how was I to know what was happening?! Having been raised by a nurse, and on the reservation we just didnât run to the doctor every 5 minutesâŚđ. (I am a white woman). I believe my bgs were at 600. And yes, it took very little insulin bolus for food. Of course, my doctor at the time (super awesome physician) watched over me very well. Since she moved on and they assigned me to a PA all hell has broken loose since.
I canât thank you enough for the reassurance you are giving me. When I was taking care of everything myself (e.g., without someone mucking around) achieved really good results. the more we talk, the more I am convinced that I allowed this new provider to do more than I should have allowed. So unlike me to not stay in control of my own health. My life got turned upside down in June and things have been a mess since, and so yes, there is more to my story than diabetes, but diabetes is making me sick and I am more than frustrated.
Oh gosh, donât let diabetes make you sick!! Take control back!
A CGM is more valuable than a pump for this disease. Youâd be surprised what you can learn. Since when do you test an hour after you eat, or know every minute what your level was why you slept. Itâll keep an accurate graph of what your sugar is doing 24/7. It can be very eye opening! But you just glance and you know your BG level. A Dexcom CGM you can set alarms for too low and too high. So it will tell you say if you set it for an alarm at 150 that your level is going up so you have a chance to deal with it better and try to stop it. (or too low)
Thought I would say hi since I too am in my 60âs, am a vegan and have type 1 diabetes. I am 68 and have had diabetes since I was 8.
My diabetes is very well controlled and I did it without a pump or CGM. I just bought my first CGM about 3 weeks ago and I sort of like it. I weigh 106 so the Dexcom doesnât always behave. It can be 40 points off at times. When it is within 10 or 15 points I love it, but when it is off more than that I find it useless. I still test quite often. I am hoping that the G6 performs more accurately for me.
If I had a pump I would never let a medical professional change the settings without my approval just like Marie said. I am shocked that doctors etc would do this. As long as you are comfortable changing your settings then do so. The more you understand your insulin needs the healthier you will be. No one knows or understands your body like you do.
I have never had DKA symptoms nor do I spill ketones, so maybe I am just fortunate. I donât understand why some diabetics spill ketones and others do not. I should probably educate myself more about the subject.
What a shock it must have been to become diabetic in your 60âs. I canât believe how life changing that must have been for you.
Thank you so much Marilyn! Isnât amazing how getting emotional support can be a game changer. What I mean by that is that it reduces the anxiety (which can cause us highs) and it quiets the mind enough to think things through a little more rationally! I used to come here all the time when I was first diagnosed and the support, friendship, tips and knowledge gain was so so valuable. When things started changing, and it got a bit chaotic going through those changes, I just drifted off. Itâs good to be back with yâall! I live in Colorado and have no idea if elevation enters into things. I had an experience once after drinking white wine having my sugars drop substantially, not sure thatâs the medicine I should rely onâŚhaha.
Things did settle down enough this evening that I was able to have a meal. Went from 344 around 12:30 pm to 147 around 7:30 pmâŚ
btw, I donât have a cgm but do use the contour test meter which keeps an excellent log.
Thatâs a great meterâI have a Contour myselfâbut whatâs totally different about a CGM isnât just that it keeps a record, but that it gives you a dynamic view of your BGâs whereas a finger-stick is just a single data point. Itâs like a movie vs a still camera. The whole situation you describe in your OP is a fârinstance. With a CGM you would have been able to glance at the app and see that your BG was ramping up, and at what rate, not to mention it would have an indicator that it was becoming critical and give you an alert sound to get your attention. Same goes for hypos, especially useful for people who go unpredictably low overnight, or who have become insensitive to the physical symptoms.
Not to push too hard on this, I totally get the âYet one more piece of D equipment and all its various bits and pieces to keep track of, ugh.â But I think itâs important to understand what the thing actually does for you, even if you decide youâre doing ok without it.
Thanks DrBB. Really appreciate your comments. It is possible I may have to go with a CGM. Iâm on Medicare now and not sure what my financial burden might be. I have a history of lows in the middle of the night (e.g., 2am or thereabouts), but so far it wakes me up and I have had time to treat it before going down for the count, as it were. I have dark humor and have been known to comment that I may wake up dead one of these days ;0)
I have asked my provider for the contact information of our local Medtronic rep. (we got a new one, and donât know how to get in touch), but she hasnât given it to me. Next step, this week probably, will be to just call Medtronic directly and ask. I agree with you in that investigating the benefits versus the âyet more equipment to manage resistanceâ is good advice. Yesterday woke up with an excellent bg, then it all went to shite later.
If you havenât read it already, I highly recommend the book by Gary Scheiner called âThink Like a Pancreasâ. I learned a tremendous amount from this book and the basal testing is explained in detail.
I got my Dexcom G5 through Medicare. It didnât cost anything, just some hoops to jump through.
After 60 yrs, I still always wake up during the night with lows, but I sleep better knowing that the CGM will wake me up. You will soon learn to not sleep on it which causes compression lows.
My wife is the one that almost always wakes me upon hearing the low CGM alarm, because Iâm deaf in one ear and sleep on my good ear. When she has been gone for a week, I have to place the receiver on my collar to have any hope of hearing it when sleeping on my good ear. When either of us is awake, that alarm is PLENTY loud and it keeps going off too often, while waiting for the carbs to kick in. I wish I could snooze the receiver alarms for at least a 1/2 hour
Hey @Dave44, I donât know if the G6 is different then? But on my phone on the Dexcom ap you can set the time the low or urgent alert goes off and repeats, I turned my off and that was a mistake, but I have mine now set not to go off until another 30 minutes. Of course you have to acknowledge it still in the first place for it to wait to alarm again.
Now the only thing still bad is if you are skating around your low alert number and keep going up above it and down again, it will keep going off because it is a new event.
The other thing I have done is my reader is set at different numbers than my phone, so I have my phone set at 80 to let me know Iâm dropping, but my reader is set at 70 to let me know itâs more urgent. And of course an urgent low at 55. So I can tell by which one Iâm hearing what sort of is happening and if I can ignore it for a few minutes. Same with my high alerts.
Yes, was told about his book early on and purchased it. My life circumstances right now are that my former landlord decided to not ârenewâ my lease, after living there for 4 years and never missing or being late on rent. Still donât know why because they are not required to say by law. I have possessions in 3 locations and a friend invited me to stay with herâŚaffordability in Denver is practically non-existent and there was no way I was going to find something in only 30 days. So, I am dealing with a host of problems. Bottom line, who knows what box that book is in and in which location! Hopefully, the local library here has a copy or can get one on the shelf. Thanks so much for engaging with me Yifat!
