I have returned after a only a few days on MDI, from the Omnipod 5 Pump, and have another decision to make since allergy season is here with a vengeance! I’ve spent the last hour studying my data from last year at this time and see what a cluster it was. And let me preface this by saying that I have had serious pollen allergies since I was a small child,(this is by no means hay fever), and have been on corticosteroid treatment for the most beautiful three months of weather here in the south (not to mention the most beautiful sites and smells) since they came on the market. For these three months of the year for virtually my whole life, ai have struggles, so T1D management has had a wrench added to it. Flonase will work, not as well, but Nasonex does work. And my allergist helped me to try to use Olapatadine, an antihistamine, at night, instead of the corticosteroid twice a day and I am committed to doing the darn Netty pot. If unfamiliar, these corticosteroids raise your blood sugar substantially, yet I cannot breathe and function without developing asthma if I don’t take care of it. So last year my data was also complicated by carb ratios not adjusted by my Endo team, due to my not understanding that was an issue. So here I am, having been off of the pump for a few days, and enjoyed waking up in the hundred range, but have begun also to have a low alarm at night despite the fact that I actually think I need more Tresiba, since basal needs are vastly different with the effects of both allergies and the allergy medication. So I can’t raise Tresiba amount, and I don’t want to lower it. And, even meals are screwed up with the effect of allergy meds - now rising and staying up even for a long hike the other day (big mistake due to pollen). However, the wonderful news is that I now have used the OP5 pump and found successes starting to happen, so I do not have to stay on mdi. Also, my pump was doing better since my reset - 2 days prior to going to MDI, at least a bit, and with it, theoretically, and I suppose in reality, a lot more changes can be made throughout the day and night since pumps are meant for this. That is, compared to MDI.
So, alas, my MDI experiment did not happen quite fast enough to not coincide with allergies. And at least in studying last year‘s data I do know that once I’m off the corticosteroids things come back almost immediately to normal. So I have questions about this, that perhaps someone can chime in on:
Do you think if I get on the pump again, which I’m 99.9% sure is the best answer (but I’m happy to entertain any thoughts you may have), will I be able to run it in automated? And then, best yet, actually perhaps enjoy that it may give me a whole lot more basal due to allergies, and then when allergy season is over, may it back down to my actual basal need instead of being quite a bit less ?? A HUGE HAPPY PLUS! (my 3 month pump experience was that I just could not quite get the basals right overnight, as they kept me high, and that I’ve had very much trouble about exercise, but with help from forum members and moderators, I have better thoughts and ideas about that now). So, is there any reason I shouldn’t be able to run it in automated - and remember since I just reset it, it should improve in about four pods and be learning fairly fast after a bit. And I will obviously be making corrections as often as possible to help its learning curve.
Or will I have to use manual? I have learned so much since being on this forum, and since being on the pump which has forced me to learn all the things I really needed to know like correction factors, and carb ratios and everything. So while I do have a better idea of what my true Basal settings are without allergies, I’m not sure what would happen in manual if I need to use it. On the other hand, I guess I could make an allergy season set of basal settings, with trial and error, but would love for automated to figure it out, and then I could take that information and have better settings in manual for allergies in the future.
And perhaps not fully related to the above, I’m going to begin my investigation into looping. I know that Omnipod will come close to what I would like to live with, but I also know that I’m very proactive, and can be regimented for carbs and exercise, and would like to be rewarded with a lower than 110 average blood glucose. And have overnights be lower so I can start my day better. My first question is that I was never on Dash, so I suspect my nurse practitioner at the Endo office would know that I’m going to loop if I ask to get Dash. If so, have you any ideas on how to avert that? I love my team and don’t want to not have them, but I want to make the best decisions for my own health. They are extremely conservative, because I guess they have to be for people who don’t pay attention as much as I do to everything blood sugar. And second, and I do not mind scouring everything myself, but I thought I would ask if anyone can point me to specific places to read about looping that will expedite my learning curve. No worries if you don’t feel like doing that, I certainly will find everything. And I really want to give the Omnipod the best to try yet, now that I feel like I’m losing my choice of MDI at least for three months. And there are so many plusses about pumping. I just have to use best practices on getting the pods in and changing them exactly every two days trying to avoid the tunneling and reacting fast when it has happened.
Thanks again to you all! I always appreciate reading your experiences and insights. And I feel so much more powerful having met you here! And that is a big deal and dealing with T1D. Have a great day!
The “user manual” about DIY Loop would be LoopDocs
At my endo’s office they know that I’m not reckless and I do the work to get a good A1C and time in range, so they give me substantial liberty and leeway. I told them about Loop, and when they saw the Dexcom AGP report showing the BG control I got with Loop they were happy. I would hope that your endo’s office would be similarly supportive since you’re clearly serious about taking good care of yourself.
One factoid that could help is that the version of loop from 2 years ago was polished and submitted to the FDA by an organization called Tidepool, with the collected data of many loopers serving as a replacement for the typical “clinical trial.” FDA did approve Tidepool Loop as a standard closed loop app for dosing insulin, and now Tidepool is trying to get interface / cooperation agreements with pump manufacturers so that they can put the Tidepool Loop app in the iOS App Store. The fact that the FDA did give approval to a version of Loop may give the endo’s staff some comfort that Loop isn’t some extra-risky experimental hack, it’s safely- and well-designed software.
Another document that may help your medical professionals accept Loop comes from the ADA. Each year the ADA puts out a standards of care document on the diagnosis and treatment of diabetes. The 2023 version is available from a link in the left column at Volume 46 Issue Supplement_1 | Diabetes Care | American Diabetes Association and on page S120, recommendation 7.28 says that doctors can’t prescribe the DIY Loop software, but they can and should assist people who are using DIY Loop to help them stay safe.
With respect to getting Dash pods, I’d just say to your endo’s staff “I’d like to try Omnipod Dash to see if I can get better control than I’m getting from the Omnipod 5. Will you please prescribe Dash pods for me?” What you say beyond that point depends on your assessment of your particular medical staff.
But do not tell any Omnipod employee that you intend to use DIY Loop. They may refuse to sell it to you if they know that, because of some legal liability thing if they knowingly help you “abuse” a prescription device. (I made that mistake, but was able to recover by sending them an email stating that I intended to use the Dash pods fully in compliance with the conditions of their FDA approval. Let’s not look closely at whether my subsequent actions fully matched my intentions…)
Hey @Quadgirl, I think that is one of the keys to success with the Om 5…or at least a key to happiness with it? I just checked on Glooko and I have been in Auto mode 70% and Manual mode 30% (more than I expected to see). That manual mode has included a purposely more aggressive basal than I probably would use if I was going to be on manual mode 24/7. That is because I use it only during/after meals to make sure I am getting some basal insulin during that time. The reason I use manual mode 30% of the time is because that is the only way to get an extended bolus with Om 5, and I discovered that my meals/lifestyle etc need an extended bolus to prevent huge BG peaks after eating.
So to clearly answer that question: I have two basal programs in my Om 5, one that is my “normal basal routine” that is tried and true for 24/7 Manual usage and one that is for use when I switch back and forth from Auto to Manual. That one is about 20% higher in total so I would not want to use it 24/7.
I went for months and months trying to make the Om 5 work for me 100% in Auto mode as recommended by the various podcasts and reviewers. Once I started using manual mode a lot, a few things happened: (1) I am definitely getting more lows while in Auto mode (not a big problem, I can treat a low). I suspect that my more aggressive insulin dosing for 30% of the day has thrown off the Auto mode algorithm. (2) I have needed to tweak my basal program to accommodate those 3 meals a day when I use the Manual mode. All of those tweaks were upward. And (3) In response to the lows that started after I went off the 100% Auto, I’ve tweaked the overnight BG goals upward in the 11PM to 3AM time range to try to avoid the Om 5 getting too aggressive while I sleep.
So anyway, long winded way of saying lots of tweaking and fiddling seems to work for me with the OM 5. One thing to note is my average BG and A1c are identical to where I was with original pods and then Dash pods, which I am OK with. If I was trying to drop my average BG or A1c a lot I might try something different such as Loop or a tubed pump. I am convinced that a good portion of my unexplainable high BGs are due to the variable and sometimes bad absorption with the pods.
So, loop can enable great management but it’s one of those things that is “crap in, crap out” philosophy. Once you dial in your settings, at least for son, it’s fairly hands off. We are using Eros PODs atm and are awaiting our Dash Pods. Once we get those, we are moving to Loop 3 (the newest release that gets rid of the requirement of carrying around a radio frequency interpreter device - RileyLink.). The Dash PODs will be able to loop with Loop 3 using only Bluetooth so Liam is excited about that.
Our son has horrible allergies to pretty much all molds, fungi, plants and animals and lots of other stuff. But he’s been on a weekly shot series for months now and all his previous ailments pertaining to his allergies have been eradicated. (So happy for this because he was miserable for months while we worked on getting it figured out).
I recommend looping for anyone but first you have to know your settings and feel comfortable MDI or using a regular pump in the regular way, before looping (learning to crawl before running kind of thing).
It’s the best decision I’ve made this far in our sons management.
A lot of people give up looping and say loop doesn’t work for them…but they fail to recognize, probably, that the algorithms with loop are sound…they only use the data that we input into the app. So, if those settings are wrong (or…entering a wrong I:C, ISF, Basal rates, etc), loop won’t help and management will be more difficult. The data entered has to be as accurate as possible for loop to work as intended.
Thanks, bkh - that is enormously promising. I appreciate all this info and had seen something about tidepool maybe on diatribe, so am super psyched about these possibilities. I will begin my deep dive right where you have pointed. Thank-you!
Thanks, John58! I almost wished my op5 would let me go low, but I do believe there must be some magic in switching to manual (to help along automated). I will set an aggressive program to use at times and actually now think my basals are pretty dead-on. I guess I should try it for a day and see what happens. I did not bring myself to put a pod on last night and am going to do this semi-naked life (just dexcom on me) for at least a week. Got very frustrated last night because I just make .5 corrections and I am convinced that with that minute amount, some is left on skin or just not pushed out of my humalog pen perfectly and my sugars were horrible (for me). This is where the pump is better when I have to decide whether to experiment with full unit corrections - at one point yesterday, I did and just tried to purposefully be sloppy on shot so as not to get the full amount. I also upped my Tresiba and figured I would just deal with the expected low (shot at 7pm and low alarms have been about 12:30) and eat an extra glucose tab. Of course, I ended up with 3 alarms and should have ignored the 3rd, too close to 2nd I fed, but was tired. Still, woke up at 100. And today, I radically decided to take a mask on exercise and wear it as much as I could for allergies and do neti pot and wash hands alot and not take the steroid spray, which makes me feel like I am on crack and impatient as all hell. And, I am having a good day! Yesterday, I think I needed double bolus and more tresiba, but geez, I have usually started meds by first week in February to get ahead of allergies. Now I have also been experimenting with taking quercetin twice a day and I think it does work. So all that said, I have at least for one day got choice and can contemplate the op5 without feeling forced to go back to it after only a few pump break days. All this makes me appreciate doing all I can to manage sugar because I do not feel good past even 130 and know this on hapoy days like today! I digressed. . . But all this to say thank-you because your use of manual around meals and finding it may affect algorithm, and even getting low gives me much optimism. Thanks for the guidance with your experience. Oh yeah - I truly think the pods are to blame many times when things go awry. I can’t tell you how many I have changed with crazy numbers to find dried blood on the adhesive, not visible until removed, and of course all the tunneling issues. If they could have cannula choices, I think that would be great, but I am grateful to have what we have and know that things are moving at a good pace (like being able to maybe soon choose which cgm to use with our pumps😁. Imagine all the personalization we could get from choices of all the components! And especially if I could use op5 on my iphone. Anyway, thanks a bunch!
Thanks, ClaudnDaye!
I agree that garbage in/garbage out is probably the rule! I also know that I am very eager, but will definitely crawl, walk, run, then soar! I have slowly changed all my settings in op5 and kept records of when and why along the way, even though no 2 days are the same and I am getting a better feel for pumping. I will do my due diligence on the front end before jumping into looping and am just glad folks here have had experiences to help me figure out what my be best for me. I am glad to be stepping into this as technology is getting easier, as you said with BT. I am happy for y’all! I am also glad your son has done well on shots. Years ago, I tried two different shot formulas from two different allergists fo over 6 months each, with religious shot-getting (never skipped), but my arm swole up like a grapefruit was in it and I could never get to the maintenance dose of either. I may check into it now in case there are better ways, but if I can change my life around and not feel self-conscious wearing a mask out for exercise and fun leisure walks, and be rigorous with washing hands and face immediately after, and if I can put up with the discomfort of symptoms without the meds that just change me and truly wreak total havoc on my blood sugars, I am going to do it. I may feel horrible tomorrow, but until then, I just hope to maintain how I am today. I feel so sorry for your son having the allergies and T1D at the same time! I guess I was lucky to become diabetic (LADA T1D) so much later in adulthood. So glad you are finding success with those allergies and getting looping to work well! Thanks for sharing!
I’m sorry that I’m late to the party! All of the replies are helpful for me to read, as well, bc I’m one of those “maybe I’ll loop eventually” people…but I’m happy with my current methods (combo of podding and injecting) and it works for me at the moment.
Since you have an allergist, I don’t know that there is much that I can add on the allergy front. My husband and son are allergic to everything in the air and we live in the Ohio River Valley…which means all but about two months of the year are one version of allergy season of another. Bc of our topography, pollens blow in from as far away as Texas and just hang here…so you can be allergic and need treatment for trees that don’t even grow here! And my boys are allergic! So fun…ugh.
I have been allergy tested but my symptoms do not rise to the level of requiring injections. My husband has been on injections for eight years, and my son’s are going into year four, currently.
I do have to make sure I take a 12 hour Claritin D everyday or else my pod adhesive, my pod sites (where the cannula goes in), and my injection sites will welt up to the size of quarters during spring, summer and fall. Winter is my only relief.
For my boys, we do as many of the mechanical type interventions as we can to minimize extra meds. They take Singulair and Zyrtec daily plus an inhaler. But we have bedroom air purifiers, dust mite proof pillow case covers, I wash everything all the time, we use a Navage on them as necessary, we never open our house windows, we don’t ride with our car windows down, they have to shower before bed to get rid of pollen from their hair everyday so they don’t breathe it in all night, I use Swiffer Dusters like a madwoman. So, if nothing else, I’m with you in solidarity!! Good luck!!
Thank you so much, Allison!
You have given me much to think about. I have been taking Quercitin twice a day since February and as crazy as it seems, I am a month into allergy season and have only taken Flonase 2 or 3 times. Since I seem to be doing well, and I do all the showering and swiffering and all that like y’all do, (and at least I get the view of the beautiful trees and flowers and the scents - how crazy to have to deal with pollen from trees so far away!), I may try the Zyrtec and I want to consider Claritin D. Since I am new to pumping with my OP5 (since Nov. with one week off for MDI), I had never considered that my allergies might be part of some of the problems I’m having with the pods the Omnipod people call it tunneling, but even when I remove a pod after 48 hours, it does have a bump where the cannula went in. Perhaps all that is exacerbated at this time of year. Anyway, great food for thought!
Also, if you have time, could you tell me how you work in and use injections to complement your pump? I’m just curious. And my pump is doing better since I reset it, almost too much better if I want to go for a walk in the middle of the afternoon, and I still struggle with being able to exercise without rebound highs later, but I want to consider all ways of living with T1D. I am very interested in looping, but had a very, very rough transition from my week off of MDI back to my pump with a most terrifying night, so I think I got a little too big for my britches and got used to making aggressive sorts of changes before I reset my Omnipod and started up as if I was on the old paradigm, even though I had only been on the reset pump/pod for a day or two prior to going back to shots. Dumb planning on my part all the way around, but I guess I’ve learned some very important lessons. I hope there are no more like that in my future. So I do think I will learn about looping and how to loop but I’m not gonna jump in as fast as I would have even last week, since I could easily do harm if I don’t fully understand all the settings and ramifications of changes. Thanks again for your insights. They are very helpful!
Laura
My personal regimen is that I use the pod for basal and I inject for food and corrections.
I am in the 30% basal 70% bolus camp loosely (I remember seeing a chart in “Think Like a Pancreas”) about this. I don’t need much basal…but I need a lot of insulin to manage carbs and fat.
Bc I need so much more insulin for food, my pod sites cannot handle it. And I also pump using my arms which are thin…so they likely cannot handle the extra insulin bc there’s not much there. I’m prone to bleeding sites anyway…especially on any area that gets slept on, sat on, moved during exercise, etc…so my arms are my best bet.
I also choose to inject for food bc I get so much more predictability that way. Some pods are “Super Pods” as I’ve seen mentioned on here…and having a more absorbent pod site for relatively small amounts of basal is not a safety issue…but for me it is for larger meal boluses. It wouldn’t bother some FUDders on here…but it does bother me so I build my regimen for me.
I do not currently Loop. I plan on staying in manual mode when I switch to the Dash. I just don’t see any algorithm staying on top of my wildly varying hormone induced insulin resistance/sensitivity throughout each and every aging cycle of mine as well as I do. The “Women’s Health” category on here got started bc of my hormone discussions. It continues to be insane to me that I know more about my female endocrine system and my female diabetes than any of my specialists do…who are all pretty sure that all diabetes is male diabetes with male endocrine systems…unless of course, you’re pregnant, and they you suddenly have absolutely everyone’s attention and they want to micromanage the absolute sh!t out of you. But as soon as the kid is out, you go back to male diabetes and no one listens. Le Sigh.
I don’t post as frequently as I used to…but when I do, it’s very long winded. I’m always happy to help as much as I can! Or at least offer war stories that can entertain. There’s a story about being carried down my multiple flights of stairs from my apartment on a gurney like the Queen of Diabetes Sheba (but the issue was syncope) floating around here somewhere. I’m not even embarrassed. It’s a hilarious story. LOL
Just to clarify for others, the Dash pods and PDM from Insulet by themselves do not offer any closed-loop automated basal adjustment options from the manufacturer Insulet. That is only available with the OmniPod 5.
What the Dash pods do allow you to do is build the closed-loop system on your phone, and do-it-yourself. Not sanctioned by the manufacturers of the pump, of course!
I know people already know all this, but I just wanted to clarify it because it can be confusing when people talk about looping on Dash, and then they get the stuff from Insulet and realize they can’t loop without building the app.
Thanks! I love a longer post and am guilty of that myself. I have to finish that Think like a Pancreas book. I am only 2 and a half years in and 1.5 years past honeymoon, so kept trying to fight with OP5 because I get so little basal compared to bolus and corrections. Now I can stop assuming the 50/50 my trainer discussed. And I have lots and lots of bleeders and tunneling and all of that, too. And as of today, I am continuing having a hell of a time timing my carbs before exercise and since I also use exercise for weight management, so very tired of eating most of the calories burned. I would never quit exercise, but very frustrating. Today I paused insulin delivery before going outside, and ate 20 min before. So began at about 159 and then by about a mile was about 137, but geez - 1.4 mile more and I am 113 and falling and feeling it. Stopped at a bench at a church for probably 25 minutes and ate 14 more carbs (just wanted to do my 4.2 fast walk). I have to start back slow to be sure not going to fall and then pause reminder is about to turn off and of course, due to polartec and jacket layer, I guess, controller cannot get dex reading (granted, dex on back of left arm and pod on lower back right side. So stop again at about 1.8 mile mark at a school and nearly disrobe to the amusement of those running around the track, and get a connection so I can for sure set pause to stay on. Then, I have walked super fast and gotten to almost 3 mile mark and I am 137 and level, so again, take off layers to reconnect and then turn pause. I go back to auto. Then another 1/4 mile and nothing happening (i am at the 46 hour mark of the pod and it was slept on 2 nights), so I do a correction - it’s suggestion number, and get home at same number, yet time for breakfast - and I love my breakfast. I cut down on carbs due to those consumed as dern sugar and bolus and no pod leaking, so think I am good, but now have been what I consider too high ever since. Burning daylight with numbers I don’t like. So, all that said, I am delighted to hear of other ways to use this thing. Worst thing ever is bolusing 5 units and feeling them and smelling them on the adhesive and now when the pid change happens, bad data is in there. I may adapt your bolusing ways to my routines. So thank-you. And about exercise - if you or anyone know some suggestions or answers, please help:
Why, when on Tresiba and Humalog bolusing, was exercise simpler? I could wait until sugar dropped to 119, eat as I walked and get home without a lot of commotion? Wonder if I needed more Tresiba and boluses supplemented, or other way around. Never worried about dying in the dark on a church bench on MDI, but I am still learning.
I totaled all the carbs eaten before and during exercise - 23. Would it be smarter to eat all before leaving and wait until I’m in 16os or 170s to go, or are there any “rules of thumb” that work for many people? I do like pausing rather than using activity, because even with similar issues while on activity, my IOB has been higher than when I started, so it gives something during exercise.
Any suggested food types that might be good for exercise, but not so many calories? I ate a combo of Nugo bar. 17 carbs. Has protein and I thought would raise sugar faster than Kind bar, but not so. And all told, ate one gummy and one glucose tab. Could this all just be a timing problem? (Order of events was, coffee with sugar-free delight, which can often get me from 120s to 159 by itself, but short-lasting, then 1/2 Nugo bar, then paused insulin, waited then walked and at church ate the gummy, 1 glucose tab and other half Nugo.
Well - thanks if you had the patience to read this. Frustrating morning and I am going to change pod now. I think I just can’t reason out why exercise with OP5 is a challenge. Also, on glooko, where it says your best day - Mine is always Tuesday. Why - because it is my day off exercise. Gotta be a way to get this in order soon. And I am going to try manual soon, but after my issues last Thursday night, I am not fully confident about my basal needs.
Alrighty! Thanks for giving me some great ideas and glad to know someone else has same pod placement issues as to absorption and bleeding and all that! Have a great day!
@Eric Thanks! That is very well-said and clear. And for once, I actually was about a week ahead in my learning and can proudly say, I did know this, but did not just 2 weeks ago. I am sure people will find this extremely helpful!
That was a pure joy to read - and I thank you. After the initial learning phase of diabetes management, it is so very important to find what works for you, and carefully try different techniques until you get there. It makes all the difference. Kudos, @T1Allison.
@ClaudnDaye I’m glad to read your comments on Liam’s allergies, that he’s doing better and you all seem to have it regulated. My brother had lots of allergies when we were kids, fortunately he grew out of most of them with time. Hope Liam does as well!
@Quadgirl I second @ClaudnDaye’s and others about GI/GO. One of the hardest things for me was following the guidance to test basal rates, adjust ICRs, and figure out an ISF (the Loop algo can by a little counterintuitive on ISF). I’m more a “we don’t need no stinkin’ ‘structions” kind of guy…on this I needed help. There are many ways of doing it out on the internet and from insulin pharma, I found LoopandLearn’s on website/YouTube worked best for me (I think Kenny Fox did most of the vids), though I’m still tweaking to keep up with by body, the weather, and time of year. The last couple weeks, despite a 15m prebolus, I’ve tended to go up to 160-180 and just sit there, even with .5 corrections (getting bolder) and have lowered ICRs about .3-.5. All of this to say, test, make slow deliberate changes, see how they work, and adjust as needed. It’s tedious, but necessary to get “dialed in” results.
@Eric’s comments on O5 and Loop are spot on. I’m surprised and shocked at the number of posts I’ve read, even in LoopZulipChat, asking, “OK got my O5s but can’t seem to get Loop to work. What am I doing wrong?” It’s remarkable the number of things Loop WILL work with, but O5 is NOT one of them! Please do your research before jumping in to use any pump, i.e. are you locked in to a warranty, is there a trial period in case it doesn’t work for you.
@ClaudnDaye Thanks for the reminder of the proper way to go about all this. Very helpful and I definitely will do the hard testing and data diving and such in order to make both OP5 and eventual looping work the best they can for me. I thought I’d learned so much and yet there is so much more to know and to keep in mind the myriad variables that interact with our very best efforts. I am surely making progress! Thanks again!
It continues to be insane to me that I know more about my female endocrine system and my female diabetes than any of my specialists do…who are all pretty sure that all diabetes is male diabetes with male endocrine systems…unless of course, you’re pregnant, and they you suddenly have absolutely everyone’s attention and they want to micromanage the absolute sh!t out of you. But as soon as the kid is out, you go back to male diabetes and no one listens. Le Sigh.