-----Flatliners Club-----

Wow. You all are doing so fantastic compared to me! Congrats. :​)

I won’t even show my graphs. I’m having major problems with infusion sets (again) that has me seriously considering adopting something like the untethered regimen…

Is this like MDI? You’ve had problems before with site allergies, maybe separate shots would work out much better for you. I know Bernstein doesn’t like pumps and many people do well following his protocol. Whatever you choose Jen, I wish you success. Please keep us posted.

Wow, perfect night-time bg curve - congrats @Terry4 !

Here’s a link that gives more information about the untethered regimen:

http://www.childrenwithdiabetes.com/clinic/untethered.htm

Basically, you replace part of your basal (say 50-75%) with Lantus, and get the remaining 25-50% from your pump and deliver boluses with your pump. This way, you have most of the flexibility of a pump (variable basal rates, temporary basal rates, convenience of bolusing, extended boluses), but you can disconnect from your pump for extended periods of time without going high.

I don’t need to disconnect from my pump, but I am getting so sick of episodes of unexpected high BG when my infusion sets randomly fail or high BG lasting for hours when the site is just not absorbing insulin because it’s so irritated. I developed allergies to the plastic sets years ago (it’s likely chronicalled on this site!), and when it got to the point that I was having to change sites every day and still having sites become so irritated that they failed, I switched to steel sets. That seemed to work for a few years, but lately I’ve been having problems with them hurting, itching, leaking, bleeding, and more and more they have begun to simply stop working. I’ve been changing them every 24 hours, and sometimes moving them 12 hours or even 6 hours, but it’s seriously burning me out changing sets that often and still having so many of them fail and running high for hours. I tried going back to Insets (plastic sets) for a week hoping that my body had forgotten its allergy, but that was a disaster—in six days I went through four infusion sets, lasting 1, 2.5, 1, and 1.5 days, and every one of them ended up irritated and failing in the end resulting in skyrocketing BG.

I really don’t want to go back to MDI because I do need the variable basal rates and find the other features of the pump very useful. So I’m thinking if I used Lantus I’d only replace 50% of my basal, because I can’t usually go below 50% anyway without ending up high. I’ll talk to my endocrinologist about it and see if he’s ever heard of it, but even if he hasn’t, I may just do it anyway. At least it would save me from hours on end of high blood sugar and constantly wondering if my problem is my site or my body or something else.

My allergies in general have been terrible lately. I’m not sure I’ve ever had to continue taking multiple daily allergy medications this late into the year and still had problems with symptoms. I’m seeing my allergist in February and am going to see if there’s some other type of medication I can take that might help. I’m hoping that maybe this is the reason I’m reacting more to sites these past few months and maybe once my allergies are under better control my sites will calm down again. I can handle the odd irritated or failed site (I am allergic to nickel, which is in stainless steel, and I have eczema so my skin is sensitive to tapes and such), but I can’t deal with it happening with the majority of my infusion sets and ruining any chance I have at tight control.

Returned from a week long ski vacation, the first one I’ve had with CGM. In the past, I had all kinds of troubles when skiing - even just checking can be tricky on the slopes, as the meter refuses to work below some temperature, so it must be kept close to body. Plus, you really need to stab yourself pretty well to squeeze a drop of blood in cold and dry weather. In fear of lows, I would end up running high most of the time. Much better experience this time - kept the receiver in an inner pocket and enjoyed the luxury of just glancing at the bg on a watch. Here is my 7-day Clarity report with some notes for next time - perhaps someone else may find this interesting.

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Very nice summary report, @Dragan1. I think one of the more interesting notes you made was your question about whether you should have extended your temp basal beyond your actual ski-time. I think the chart concludes you should have. Overall, this is excellent control for such a strenuous activity. Well done!

What altitude did you sleep at? I used to do more alpine sports in former times and remember that I had to cut back on my insulin delivery just by subjecting my system to a higher altitude and making it work a little harder all the time. Did you sense that? I know it’s a small factor compared to actually skiing but wonder if you noticed it.

I noticed that you set a lower upper limit for night-time. I set my Dex receiver to 120 all day long and the lower limit to 70. Then for Clarity I set the limits to 65 and 140. Do your Clarity limits agree with your Dex receiver limits? Just curious.

What did you use to make notes on this chart? It’s nice and tidy.

Jen, that seems like a reasonable regimen to try. Your struggle with allergies seems really frustrating to me. I take for granted that I can dependably infuse the insulin I need. It would be nice if you could get some kind of relief from this challenge. Someone mentioned another allergy med in another thread. I don’t remember the name of it. Is it something that might help mitigate your symptoms? Your tenacity and good attitude amazes me.

Been considering setting my upper limit to 120 – right now, the Dex receiver is set to 130, but since the Vibe has the older firmware, it only gives me 20pt increments on the high, so it’s set to 140. Most nights, I’d expect to see no alerts even at the 120 level, but I may see too many during the day; however, if I go to 120 as a high, both devices will be set the same… have to play with it, perhaps.

I was in Vail, CO, so at around 8,000 ft (2,450 m). But, I live in Boulder, CO at around 5,300 ft (1650 m), so this was not such a huge change in altitude or weather conditions. When I travel to sea level, however, I would sometimes notice that I should temporarily (for a day or two) adjust basal rates. But, since trips often involve so much other variability, it’s been difficult to identify patterns.

The limits on the graph reflect what I now use for assessments of my TiR. I’d like to tighten up night-time bg control some more. Your recent example is the type of night-time bg curve I would like to reproduce as often as possible. On the Dex receiver I keep slightly higher lower limits, and the same upper limits, so night-time at 70 and 120, and day-time at 70 and 140, and my overall goals are simply to not activate the alarms. With a day-time upper limit at 120 the alarm would turn on too often for me, which is why I move it to 140.

The chart was done by annotating a screen capture from Dex Clarity in PowerPoint. I am pretty sure this could also be done using any of free photo annotation tools. For example, such simple annotations could be done in Preview on Mac. In general, I’ve been pretty terrible about (not) keeping any logs or records. Trying to improve on that, I’ve been inspired by some of your charts with insightful comments, by other people on TuD who have had success with logs and records, as well as by images in Ponder’s book. I’d further like to make annotated charts that would combine Dex and my Minimed pump data, but I have not been able to find a way to do that yet. Diasend takes all kinds of data, but not data coming from a Minimed pump, unfortunately.

That’s an interesting approach, and I hope you have success with it @Jen. Infusion set failures are very frustrating even when they happen infrequently, and I can only imagine what you are dealing with these days. Best luck! Regarding allergies, a side question: have you had your vitamin D level tested?

No Vitamin D level checked. Though I’m sure between autoimmune diseases and many allergies (both associated with low Vitamin D, I believe) and living in Canada, my Vitamin D level is probably low. When I asked my GP about it he brushed it off. It’s a test I’d have to pay for even if I did get my GP to order it, and I’m not sure how much it costs. Might see if he’ll reconsider next time I have an appointment. I’ve had both allergies and diabetes since I was young, though, so neither one is new and I’m not sure how much Vitamin D would change the course of things.

I used to have some mild skin rashes under watch wristband, as well as around infusion set sites. About 5 years ago I had Vitamin D blood test ordered by my endo, and it was found to be very low. She told me Vitamin D deficiency is very common among people with T1D. She prescribed some large supplement over couple of weeks, followed by over-the-counter daily dose. I have since been taking 4,000 IU daily, my level is in what is considered normal range, and I no longer have any skin rashes. There is a lengthy discussion about Vitamin D at Linus Pauling Institute. I would not expect any miracles, but it would not hurt to check and, if need be, bring Vitamin D to a normal level.

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I think your advice about Vitamin D is probably good for all of us, thanks.

I have truly enjoyed reading (and felt a kinship with the posters) As most of you know I have had many probnlems with my current Endo practice because I strive to noj-D numbers (and usually am pretty successful - but all have our ups and downs). I have had to show CGM printouts to prove that my A1C isn’t an average of extreme highs offset by extreme lows. (I really want to ask if this practice thinks that upon Dx of D you also should be Dx’d with the co-morbidities of stupid and lazy - they have such a low opinion of their patients. At least that is my experience). ANyway, I like to describe myself as approaching my D the same way I approached coloring books - I like to stay within the lines.

I allow myself a range - a range that is close to what people woithout D experience. And most importantly, what I do works for me - and I believe I have a say in my treatment since I am the one who has to think like a pancreas (that’s Gary S for that phrase)

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I whole-heartedly agree with your approach on this, @artwoman. Unfortunately the coloring books that PWD use do not match up with the coloring books of the docs. If I use the docs’ coloring books, I clearly draw outside of their lines and I righteously do so. They don’t have to live in our bodies 24/7. They don’t have to live with the complications that arise from years of following their “permissive hyperglycemia” tactics. I only have my body to look after. I agree with you, as close to normal BGs as possible, thank-you very much!

Remember for every patient like you, your clinician probably see a 100 that don’t invest the time, energy, and attention that you do. I think the docs have been beaten down by the aggregate effect of their patients that don’t want to be inconvenienced too much with their condition. It would be hard seeing 3, 4, 5 patients an hour every day and witness most patients’ A1c’s north of 7% or 8% or more. They talk to most patients that don’t want more test strips to use, but want to test less.

When the docs finally see someone like us they tend to not believe their senses and instead doubt that we are the real deal. They’re seen so much variability and outright BG rollercoasters they don’t think that an A1c of less than 6.5% can be had without excessive hypoglycemia.

I used to be angry with docs because they don’t get people like me. That’s OK. They have a tough job and the system in the US just beats them down and wears them out. Count me in as a member of the “smile and nod” club. Just give me my scrips and watch my blood tests and I’m OK with that. But don’t try to give me any advice on dosing insulin! They have no idea about the game I play.

You are far more forgiving than I. My former Endo - who like so many other MD’s no doubt had patients who didn’t(or couldn’t) make the efoort. In turn he greeted me with hugs, appreciated that I proved that at least for me (Zoe is correct different folks have different needs/approaches/etc). His taking pleasure in my successes, only served to motivate me even more.

Currently, I am accused of lying about my bg’s, given handouts that to qualify for a pump I have to have uncontrolled diabetes (I’ve been pumping for about 12 years now - long before I met them here - and I ask if maybe my control is due in large part to my being a pumper (and my willingness to pay out of pocket for my Dexcom). Part of my challenge right now is that I am living in a new city, and still trying to find an Endo who accepts my tight mgt, and then find which health plan network they are in.

As to coloring books, I always embellished the images in the books, gave the pictures fancier clothes, more stuff in the scenery etc. i.e. I ,make my own lines in the coloring book.

So terry4, what city do you live in, can you give me the name of your good Endo?

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I live in San Francisco. Don’t you live in Portland, Oregon? I will be moving there next March. I’ll be looking for a new endo as well. Or I might commute to San Francisco to stay with my current doctor. I intend to take up a full-time RV lifestyle and I thought I might get set up with a doctor at the Mayo Clinic in Phoenix. I went there for another reason a few years ago and I love the way they treat patients.

My current endo is a woman who I like because she communicates well. I still think she doesn’t fully appreciate what I do. I thought for a time that she might have some professional curiosity about how I get the results I do, but no. That’s where I think the clinician’s schedule demands are a grind.

Not a flatliner so to speak, but I’m starting hour 37 of a no hitter! High alarm is set at 150, low at 65!

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Excellent! I’d call that flat-enough! Great work - keep it going!

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I’d call that a flatline, too! What caused this bit flatlining? An early New Year’s Resolution? Or just the recent full moon??! Good for you @MissMargie!