Unfortunately, I am on a pump “vacation,” of undetermined length. That can be a skin tissue and what’s left after steel infusion sets topic for another time. Currently, though, I am struggling with late morning lows, afternoon highs, and midnight to 4 a.m. highs. I finally split my basal dose to include an evening injection to help cover the overnight as long-acting often doesn’t last 24 hours in a patient. What I am shockingly, ignorantly confused on is if my 4:30 a.m. or 7 p.m. injection of Levemir is contributing to the persistent low’s from 9:00-11:30 a.m. I am also titrating off of Victoza as I no longer see the satiety or post-prandial impact as I initially did. That injection is currently 7 “clicks” (1 “click” below 0.6 mcg) at 4:30 a.m., too. My afternoon elevated blood sugars may be from overtreating the late morning low’s with a 27 gram of carb early 11 a.m. lunch without bolus. I can’t seem to control it by adding afternoon exercise either. Also, on IPT, I am exremely insulin sensitive, yet I am oddly on twice the basal for MDI, instead of the expected 15-20% increase from the less efficient absorption, etc. Yet, with my back to basics quesion, is it more my 4:30 a.m. or 7 p.m. Levemir injection that contributes to my late morning low’s? I would rather not titrate down my 4:30 a.m. dose too much as I struggle with my afternoon elevated blood sugars. And, if I back off of my 7 p.m. dose, my fasting and early morning glucoses run away on a hyperglycemic freight train and are difficult to stop. I almost want to go rogue with those and try Metformin to surpress my liver’s effects, yet I wouldn’t do well with its side effects. And, it is often less of a dawn phenomenon issue for me, and more of a freaky my body is panicked to be alive and starts skyrocketing as soon as I wake, yet not while I slumber issue. I do an initial correction bolus for that as soon as I start to wake, too. For the basal question, though, so far, my strategy is to be diligent with eating a glucose treatment as soon as I see my CGM dip in the morning, yet the carbs needed are getting significant. The other option seems to be to lower my a.m. dose, and deliver a correction dose in the afternoon as soon as I see my CGM swing upwards, like I do at about 2-3 a.m. in anticipation of the full wake-up skyrocket. Thanks for your titration and/or other ideas.
Sorry to hear you’re having difficulties finding balance, and I’m afraid I can’t offer any insights regarding your Levemir. I did notice you are weaning off of Victoza and I wonder if making multiple changes at the same time is “confusing your body.” I was taught early on that is usually best to make one adjustment at a time and see how the body settles before making another.
Wishing you all the best in finding a solution.
Very valid point that I try to adhere to, well at least when my body is more reasonable :). I, too, was taught one change at a time, and try to only make a change every 3 days or so. I am often getting to 100 grams of carbohydrate for corrections alone in a day, though, so I needed to make a few changes at once :). It seems like that when I am not 55 mg/dL, I am 225 mg/dL, with no happy medium so far. I also tried placing my Victoza at lunch to see if it could shove down the afternoon hyperglycemia, yet it seemingly stopped having a post-meal effect. I only did that for 1-2 days before some other urgent shift was needed, and an additional time of injection in the day is a PIA and not as consistent for me. That experience is also making me more certain that the 4:30 a.m. Victoza is not the late morning hypo culprit. I also remembered that I was having these late morning hypos when I was only on the a.m. injection of Levemir with Victoza, making me feel as though it’s not the evening Levemir dose that’s the issue. It’s the a.m. Levemir dose that’s the problem. I’m just not sure how to adequately cover my afternoon glucoses if I back off of my a.m. Levemir. My physician agreed with me to push my p.m. Levemir to its current later time of 7 p.m. to help with my fasting and early a.m. glucose coverage. Previously, I was dosing it late afternoon which seemed to help those blood sugars, even though it’s not immediate acting. The only other variable is that even on IPT these past few years, my boluses seemed their most intense at about 3.5-4 hours when the rapid bolus should have been tapering off or complete. I am doing the 2-3:30 a.m. rapid bolus in anticipation of my wake-up spike. Sometimes there is an additional correction by 5:30-6 a.m. putting me in that IOB intensity zone, yet I am getting the late morning lows even if my only rapid is at 2-3:30 a.m., placing me out of that danger by 7:30 a.m. It shouldn’t be this complicated!!! This has NOT been my favorite month :(, yet I am bleeding through and clogging my infusion sets when on IPT. That unpredictable and persistent abscence of insulin flow feels very severe in my body, even if ketones are not present. I’ll likely have to back off my a.m. Levemir and do a afternoon Humalog correction, once again forcing me into another time addition of injections that won’t be as predictable. Thanks for your comment. Wish me luck!
Maybe e a change in your meal dose (sliding scale?) would help with some of your numbers?
In your initial post you said you were taking a vacation due to issues with your infusion sets. Have you tried any others to see if they work better than the steel? I’ve never tried the steel myself and use Autosoft 30 and occasionally the Autosoft XC with my Tandem pump but whether you use Tandem or Medtronic your pump rep might be able to give you some to try before you “return from vacation.”
Thank you for your comment. Yes, my sliding scale is basically non-existent at this point. On IPT, my insulin sensitivity was extreme, and with half of my current MDI basal, I was still at about a 1:50 I:C and 1:110 ISF. With MDI, 0.5 units of rapid can be a ton of insulin for me to navigate so there’s not a lot I can do to make my insulin match the amount of carbs I choose to eat. If I bolus, I have to eat more than I intended to, and even sometimes when it’s a correction. And, between hormones and food sensitivities, it’s very difficult to get a 3 day trend to evaluate. It’s more like survival mode than refinement of my ratios mode, yet for years. Today, at 2:49 a.m., I was 97 and did my newer 0.5 u Humalog bolus to stop my wake-up body panic hyperglycemia. By 4:11 a.m. I was 138 and I decided to do another 0.5 u Humalog by 4:30 a.m. when I was 140. By 5 a.m. while walking I was 174 and rising. By 9 a.m., I’ll be in the 50’s. I do run a tighter ship than most as I’ve been through extreme nerve and arthritic like pain with swelling when my blood sugar gets above 92. Today, I will again intend to plow through a lot of carbs in the late morning, do a correction unit in the afternoon, and go back to 1.0 u Humalog right at wake-up even when that feels dangerous as I drift back to sleep at a perfect blood sugar. And, for the infusion set input, I’ve tried all of the sets that Medtronic has to offer via their 800#, my CDE/endo, the rep, and the local trainer. It’s difficult to accept as I was always quite resilient and free from “issues.” My preferred set was the Inset with the Ping, yet that set was also recently discontinued and the replacement is terrible for me. When I was still allowed to cling to my Ping, I was transitioned to Tandem’s T-Slim, and would routinely go through 4-5 sets a week from excess bleeding and bruising, with a few rarer kinked cannulas, too. It’s something with my body as my sensors can leave pools of blood, I get huge bruised bumps and sometimes lingering numbness from blood draws, and a few nerve injuries are not healing. I keep trying to get a neuro consult for the latter, yet it’s not something I look forward to doing and about half a dozen referrals have already been lost in transmission, re-routed to other sub-specialists, and then denied. It makes me less persistent in the repeated defeat of it all. Enjoy your weekend and maybe a patriotic berry striped cake, too
Of my goodness - I do feel for you with an you’ve got going on. But you sound like you’re on top of things. I’m out of ideas but an tagging @Dennis and @joe who are both very knowledgeable and analytical and might have thoughts to offer. Again wishing you all the best.
Thanks for the tag @wadawabbit hi @mamamaegs welcome to the forum. I don’t have anything useful for you except that I never got long acting insulin to work, I was always high and correcting or always low and eating carbs to feed that insulin. Sometimes that’s the very best you can do.
Some people have very different results depending on the active ingredient and formulation of prescription insulin, so if there is trouble it’s common to get samples of others, for example, Lantus and Tresiba, for comparative observations.
You are taking good notes, keep at it until you are satisfied but diabetes is not a perfectionist’s dream. Doing the same thing over and over can lead to different results (Einstein wasn’t a type 1) and going for 70-90mg/dl all the time is, in my opinion, asking a lot. Cheers and good luck
Thank you for your reply, and the extra validation that MDI is imperfect at best. A “healthy” pancreas does not deliver a flat line of basal insulin for the day, why should I? Fingers crossed, a healthcare provider will eventually be concerned and find a solution that helps me back to IPT. Until then, I will remember the idea to try different long-acting insulin options. Thanks for the tip.
Do you have a good endo? As @joe said you’ve keot some impressive records. I know you’ve got other stuff going on aside from T1 so I hope yours is working with them. My current endo and three other specialists are all at one hospital, so they share access to my records and I like to think it’s easier for them to communicate if need be. I’m sure you’ve already invested a good deal of time with your practitioners but that’s an idea to keep in the back of your mind.
My endo is the best, both in intelligence and compassion, and practices at the region’s medical university. I must not be communicating the fear and debilitating effects of some of my issues well enough, or there are just so dang many issues that he force ranks them by urgency. For the ongoing infusion sets issue, two quarters ago I pressed enough to be referred to his technology specialist CDE who shared that IPT might not be worth the hassle for me. So, that wasn’t a solution. This quarter, he suggested the sports performance lab to look for nutritional and/or other problems contributing to the overall tissue problem with infusion sets. He thought it was separate from my nerve concerns and more tissue based. When I called to make an appointment, the testing required his referral and he then decided the testing offered wasn’t appropriate for me. It’s difficult to just not cry on the hour every hour when you almost get to hope and it ends before it begins. At least I like calories…this MDI business is a beast, yet a different kind of beast than projectile vomiting in a public bathroom due to a failed infusion set…while travelling home from an endo visit where I presented with ketones :).
I’m going off-topic now, but have you tried Omnipod? For whatever reason, my daughter couldn’t use any of Tandem’s many infusion sets, but Omnipod works well for her. Just a thought. Hang in there, whatever method you use!
Thank you for your comment. No, I haven’t tried Omnipod. It seemed like patients struggle more with its pod and the weight of the pod than with infusion sets, yet maybe with my struggles that would be different. Why do you think the Omnipod is working for your daughter when the Tandem infusion sets do not? Is it the length of the whatever its version of a cannula is? What didn’t work about the infusion sets, it I may ask? I am currently on a Medtronic pump, yet when I was clinging to my Ping, its Inset was replaced with Tandem’s Tslim. Medtronic’s version of the inset, the Mio, is now discontinued, too, and their new advanced Mio set is crazy aggressive to my flesh at insertion when I can even two hand press the release button hard enough to get it to insert. When it rains, it pours :). With Omnipod, I also don’t like that there isn’t at least an “easy” bolus option on the pod when I inevitably forget the meter remote at home, etc. But, hey, if it is at least delivering my basal (well, if it’s not an empty pod and I’ve left my remote at home), then that’s progress! I wonder if I could insert a few “real” ones…I think they have a 30 day trial or something, though. Not all of my traditional infusion sets fail, though. Hmmmm, but maybe. I’m almost getting excited again…thank you. And, can you still use the Dexcom receiver with or instead of the meter remote? I place mine in my bra, and something’s weird there now, too, so heavier and larger cell phones fall out. I’m pretty trigger finger with my CGM needing to know my values all the time. I do run the app on my phone, too, yet it is not always with me as I run to the bathroom, quickly water the garden, grab the mail, etc. Thanks again.
I wish I knew why the Tandem didn’t work for her. We used every infusion set they make, dutifully followed every instruction, took careful notes, and consulted with multiple endos, CDEs, and Tandem reps, but we never did figure it out. It sucked — I’d fought like heck to get our insurance to cover the Tandem, and when it worked, Control IQ was a dream. But so often it didn’t work, and you know how that is, unfortunately. So we gave up, and went back to Omnipod. As I’ve said on this forum before, the best hybrid closed-loop algorithm in the world is no use if the insulin never makes it into her body.
Lack of Control IQ aside, she actually prefers the Omnipod for lots of reasons, primarily that it’s tubeless and waterproof. The pod size doesn’t bother her, and yes, she uses a Dexcom. Like with your Medtronic, the Omnipod can’t communicate directly to the Dexcom, so you have to enter your BG number yourself. (Their application for approval of a hybrid closed-loop that will communicate directly with Dexcom is on the FDA’s desk, though, so maybe someday.) As far as devices go, she’s just gotten used to always having them (she carries the Dexcom receiver because she doesn’t have a cell phone yet, and also the Omnipod PDM). They go in her diabetes kit, or in a pocket or one of those exercise waistband things, or on the desk next to her, and just like most people always have their phones, she’s always got her receiver and PDM nearby. She prefers the look and feel and function of the PDM, too, over Tandem. We haven’t ever used Medtronic.
They do have a trial period, and they really will let you return it and owe nothing, because we did that when we were trying to make the Tandem work. (And then we ended up eating the cost of the Tandem when we went back to Omnipod, but oh, well.) Oh, and at least for us, Omnipod is ridiculously cheaper, because we get it through pharmacy instead of the durable medical equipment benefit. That made a huge difference.
Let me know if you have any other questions, but I’d say, if it’s an option for you, call their rep and give it a try.
Awesome! Thank you for your willingness to share. And, even with Medtronic’s “automode,” I primarily use the Dexcom system. 140 mg/dL is way too high for me to have as a goal, so I adjust manually instead. And, why does the FDA get to control that number, but not what I do infinitely more dangerously manually via IPT or MDI?? If I want to be 80-92 mg/dL with all of the extremes in getting there, that’s not a problem with the FDA. Yet, getting to that range, with sleep, less fear, and far fewer high’s and low’s via a closed loop in a tighter glucose range is a problem?? I really do hate that number, and I go through periods of trying to train my body to normalize to worse, higher, glucose control, and I feel miserable. Sooooo, that seems a go that I can still use my Dexcom system’s receiver. I seem to never have my cell phone on me, and use the receiver when I am not lounging by my computer, etc. If something doesn’t stay put in my bra, it’s unlikely to be near me enough. That does concern me about the remote/PDM. There was apparently a famous blogger/writer that swore by Omnipod and he left his PDM in the back of a taxi cab in a huge city en route to some diabetes convention. I am sure that like with my many broken pumps, Omnipod would overnight a replacement. I just find MDI so cumbersome, that those emergency back-up plans and “vacations” are fairly extreme. I picture myself needing that replacement frequently :). I suppose that as long as the pod is full of insulin and delivering my basal, I could attempt for low carb and hope to not overcorrect a low until the PDM arrived, though. I am sure if thousands of others have managed the PDM issue, I would, too. And, I might even figure out a system and or bra that could solve those PDM concerns during the trial period. And, I am sure I will get over this, yet the insertion freaks me out a little. I keep imagining an insect’s fangs biting me with its hidden, electric entry. Is there better imagery for me to shove into my mind? Placing a straw into my favorite fizzy diet cola while not looking?? Thank you again for sharing great info. Please give a hello to your daughter for me! Oooooh, and have her try Monkfruit/Xylitol/andy sugar subsitute she can tolerate well (and Cinnamon and ginger) on Cucumber slices. It’s my new favorite carb-free snack
The PDM is pretty small and slim — if your Dexcom receiver stays put comfortably in your bra, I’d think the PDM would, too.
Yes to their willingness to overnight replacements.
I like the slipping a straw into your favorite fizzy soda image.
And thank you for the greetings and snack tips!
If you want the fuller explanation, here’s one of my previous posts, including pics of the PDM compared to the tslim:
Hi again. I admire your very ambitious goal of keeping your high in the low 90s - in large part to prevent the pain you have with arthritis. Of course it’s your decision and right to keep your control that right, but a while back I read that tight control could be more dangerous as people get older. TBH this may have been before the advent of CIQ and I don’t know how or if the technology has changed that idea (which may not even be widespread).
I use CIQ and it is marvelous but it’s not perfect so I like to give myself some “wiggle room,” and some doctors may recommend a patient aim a little higher on the lower end of the scale, for the sake of safety. 140 is too high to be acceptable for you but maybe in time (once your pain issues are resolved) you could train your body to another number a little above where you are.
PS - there are sports bands people wear around their arm to hold their cell phone and other paraphernalia - it should work with a PDM. Another option might be a small crossbody bag if you’re okay with something hanging off of you. Speaking of which, when I used Dexcom’s receiver I found it fit nicely into a Vera Bradley ID case.
Thank you again, for your account of the Omnipod. I already sent a quick inquiry in with my glucose logs for my endo to evaluate. It’s nice to hear that the PDM design is small and slim, too. Best wishes and health for you and yours.
Thank you. The balmy weather equivalent in blood glucoses isn’t exactly a personally picked goal. My body’s revolt picked it. And, I am not certain that I have arthritis, it felt like accounts of rheumatoid arthritis and nerve pain combined into a quite severe experience to learn my food sensitivities. My knees, now, apparently there is arthritis concern there from jogging 10-20 miles every day for over a year. It feels more like rips and tears, though. That exercise excess was pre-food sensitivities, yet obviously presented its own glucose challenges. And, akin to what you are describing, maybe even decades ago, it was shared with me that it is more about the peak to trough with blood glucoses that is particularly nerve damaging, rather than a consistent more elevated blood glucose level. Previously, it seemed to be that glucose’s toxicity fried nerve endings and the lower the blood glucose to normal values, the better. I think I maintained the elevation strategy for quite some time out of convenience for being a busy professional with either a large area that I drove or a lot of physically running around and upright. The rule of 15 adds up when you are constantly trying to get from point A to point B, or needing to be interacting with strangers. It might still be my rational preference, but currently I get incredibly fatigued and at times nauseas from elevated glucoses. Automode was gnarly for a surgical procedure, let alone a yoga session. I usually can’t make it past 3 days or so of trying to train my body to accept hyperglycemia without feeling the need to give up from the fatigue and nausea of it all. This is even though my most severe of my feet swelling so horrifically, I couldn’t fit them into my tennis shoes, weeping from aching hands that couldn’t even clasp my test strip vial to easily test (my CGM was approved yet inconveniently not shipped…for years), and other sharp crazy burning pains on my extremities is kept at bay with my diet. The severities happened suddenly after a physical examination and I associate it with that, and found it ridiculous to try to get another evaluation for it all. Soooo, no diagnosis there. Beyond gratefully, much of the pain seems greatly reduced to non-existent with a very restrictive anti-inflammatory diet. Now, if all of the other symptomology would quiet down enough to give my body at least a 2 week timeframe to recalibrate to higher glucose tolerance and even better continued hypoglycemic awareness. That would be ideal. It’s almost too good to imagine having my pump do all of the exhausting hypervigilance and micro adjustments. I am tired :). I welcome technology to do that work for me! Thanks again for you input.
Have you looked into any holistic or herbal remedies? My husband is from West Africa and prefers to use those when possible. We have more herbal teas than I can count, although he prefers to grow his own. There are healing properties to many plants if you know what to look for; however they might affect glucose so - no offense to your intelligence - rather than tell you any although ones I’ll suggest you consult an herbalist or do some research on your own. Even better, both.
One thing we use topically is raw shea butter. There are lotions that contain it but we get the raw form which comes in a block or a tub. Consistency ranges from very firm to “buttery” and I don’t know if there’s any difference in effectiveness based on how hard or soft it is. I’ve ribbed it on my face to help with sneezing and my chest and throat to help with a cough and it fits help. I haven’t tried it for pain but it might help there as well.
I don’t think I’ve noticed any glucose effects using raw shea butter but I haven’t been super conscientious about checking. So if you decide to check it out - or other natural remedies - I’m sure I don’t need to tell you to do your own due diligence.
Western medicine tends to overlook herbal treatment but it can provide relief.
Poignantly, I remember a physician sharing that naturopathic medications are not safer, they’re just not FDA approved. I like my medications trialed on a lot of people before I try them, yet there are a few homeopathic remedies that I have not had adverse reactions to, and they seem safer than western alternatives for me. The only one that I can really think of, though, is a saline rinse for my sinuses. It works better than OTC allergy remedies so far, as those caused noticeable hyperglycemia in me. Other naturopathic and health food store supplements landed me in ER’s and/or severe discomfort these past 11 years or so. The most recent from not knowing that Tumeric acts like a blood thinner for its anti-inflammation qualities. That contributed to some of the excessive bleeding I was having during blood draws, injections, infusion set insertions, and more. It’s a pretty common additive to herbal teas, too. I realllllly like the idea of more holistic care, it just didn’t work well for me this decade. My brother actually recently married an herbalist :).