Enlite! Oh... wait.

Ever since I heard about Medtronics new CGM Enlite sensor I was excited to get it. It's reportedly tiny, painless, more accurate, with an intended 7 day use. Despite the Dexcom being the favorite choice for long-wear and comfort, I've been waiting for a sensor that has all that, but continues to integrate with my pump. The FDA had been SUPER slow in getting it approved. So, finally a couple weeks ago we got the news that it is approved and immediately available! I called them to get it sent to me, but found out that you have to also have the latest pump with low threshold suspend. So, I have to wait until my warranty period is over (May 2014), before I can get the newest pump and the Enlite sensors. I guess patience is all part of the game. But, I have to say... this timeline is nothing compared to what my sister has experienced in the UK with national healthcare. She was told a couple years ago that she was on a waiting list for a pump, and then hasn't heard a peep since.

In the meantime, I'm using expired sensors because I get much more wear on one than is recommended. I get 7-10 days on a 3 day sensor. They are working just fine. I had to ask M-tronic to stop shipping me sensors (and a bunch of other stuff) till I could get caught up. I probably won't have to get anymore before the Enlites come. The good news is, I'm on a winning streak with the Sofsensors no bleeding or bruising, just moderately painful harpooning. I can live with it till at least May.

Blood sugar mysteries,the good kind...

Back in September, I believe it was 9/9-9/10 or somewhere around there, I got spooked by my glucose levels. For about 36 hours my levels stayed incredibly stable! It was an almost un-diabetic experience. I kept looking at my CGM graph and felt fairly incredulous when I saw that I was still cruising steady at 80 mg/dl. I kept double-checking with my meter because I thought my sensor was going bad. It wasn't, I was literally teetering on the edge of perfect blood sugars no matter what I did. It wasn't just that I was running lower than usual, it was that I was neither rising nor dropping the normal amounts that you expect in the course of a day. I checked my data on the CGM and it showed that I was averaging 76 mg/dl and, (with the 24 hour high being 83 and low being 60) the standard deviation was something insane like 7.

Theories went through my head:
-was my infusion set in a vein, giving me super efficient insulin delivery?
-had my body figured out how to moderate my blood sugar (both high and low) just a tiny bit better?
-was I getting beta cell function back?

I still have no idea what was going on. On the third day or so my I think I sabotaged it and had dessert or something. It was almost like I wanted to make sure everything was still volatile. Party over!

Here's something I can say for sure, the more I aim for good control, I notice that my body becomes accustomed to that regularity, and it becomes easier to achieve it. When things are erratic, they seem to stay that way until I really settle things down with some simple living. It seems like there is some inertia to it, and it goes in cycles. Additionally, one of the major variables that seems to have the most consistent affect on my control is my infusion sites. When they are working well, it's a dream... when they lose their magic, it's obvious, and my blood sugars rise and react sluggishly to insulin.

Untethered For a Day

When I woke up yesterday with no more Novolog in my pump, I did what any sensible insulin addict would do and took some expired Lantus. How much? To be safe I took 50% of my total daily dose, 18 units. Immediately my levels returned to normal and I felt that twinge in my gut that signals glucose dropping quickly. It was such a distinct sensation that I wondered if Lantus loses it's time-release function and acts quickly when it's old? It leveled off in a comfortable range and I relaxed.

I disconnected my pump, but carried it around all day since it could receive data from my CGM and help me keep tabs on my levels. During the day I had to do corrections of expired Novolog from a pen. They sort of worked... I was able to keep my glucose at or below 200 all day. Due to a busy day and subbing for a colleague, I didn't have lunch, so I was able to skip the mealtime bolus drama. The corrections throughout the day were already keeping me pretty busy. (Meanwhile, in the pharmacy, it was taking them all day to get a hold of my doctor and get me some emergency insulin. Good thing I didn't throw that expired insulin away. )

I picked up some legit Novolog pens, but didn't want to start the pump back up until the Lantus was out of my system. I did have a low after dinner and had to do some snacking to keep things in check. I had been a bit aggressive with corrections since I suspected the Lantus would eventually start to taper off. Of course, overnight my levels started to rise and I was awakened by high blood sugar at 2:30am. I couldn't sleep so I got up, loaded the pump, took a Symlin aided correction and have been up since. I probably will regret not sleeping, but the week is winding down and after lying in bed for an hour, there's no point in staying horizontal.

It was an adventure. I kind of liked being free from tubing for the day, but correcting with Novolog every couple of hours was similar to being tethered to something. I didn't relax about it too much.

I have some blogging to do...

I've been storing up some thoughts, observations and data that I would like to document here. I'm going to make a list to remind myself of the writing I'd like to do.

• Blood Sugars Mysteries, the good kind... (why do we have a day or two of unbudgeable perfect glucose control?)
• Off label uses for Symlin
• My LDL Cholsterol went down (a lot) for the first time in 7 years. Why?
• My other data from the recent months, not as bad as I thought. 
• iBGstar Meter on sale, is it worth anything?

It might be an interesting day for glucose...

Every time I fill my pump reservoir I hold the wee cylinder of insulin up to the light and say to myself, "I can't believe this tiny little amount of clear liquid is going to keep me alive for the next few days". It's always kind of awesome to realize.

And then, today, I ran out... Like, really ran out! What's going to keep me alive?

I'm feeling a little irresponsible, but I'm also a victim of the random whimsy that is mail order prescription drug service. Usually they ship overnight, and usually they auto-ship. Neither of those happened, and when I got down to about a week of insulin left, I manually ordered my prescriptions. I got a confirmation that my shipment had been shipped and was relieved. Then yesterday, I came across this sad little package on the counter that had some pills in it that I didn't need. "Where's the insulin?" I checked the website and see that all the diabetes related stuff was hung up (no doctor refill response?), and not yet shipped.

Hmmm. In the fridge I have Lantus and Novolog pens, but they expired a year ago (it probably IS irresponsible to not know the status of those). I took some anyway (and Symlin). I know that when stuff expires it often still works, maybe just not as well. I could fill my pump from the Novolog pen, but I don't really want to commit quite yet. What works better 12 months expired Lantus, or 9 months expired Novolog?

I called Walgreens at 5:30 this morning and explained my situation. They are going to try getting in touch with my doctor, and then try to get the insurance to override the insurance limitations and get me some fresh Novolog. Sounds complicated, but I think they've done this before. I'm glad they are 24 hours.

I'm sure I'll learn a lesson from this, I usually do. 

New meter, again.

I use pretty much whichever meter is integrated with my Medtronic insulin pump. It keeps things simple. First they gave me a B-D Link Meter, then about two years later they switched to One-Touch Ultra Link, and now they are paired up with Bayer. A few months ago they shipped me a Contour USB Next Link. Yep, next is right.

The Next Link is supposed to be more accurate, and it has a USB connector right on it, and works to upload your pump data. So, you don't need another device to upload your stats to the Medtronic CareLink reports website. It's pretty small too.

All that said, I'm not totally flipped over it. There are definitely some things I like about it, but unfortunately the things I don't like about it pop up every time I use it.

Operation:
My old Linked meters used to just send the test results directly to the pump and initiate a conversation about a correction, if needed. This one asks me every time if I want the results to be sent to the pump. Every time... I have to decide. It also asks me upon each test whether this is a before meal test or an after meal test, I always push "no mark" because... I really don't care... (my pump already has all the meal times programmed so I can look at that data later). So, before I can see my darn numbers I have to answer questions, and then I have to tell it to send the results to my pump. I'd love to skip the questions and just get on with it. This is a major weakness with this meter, for me... I've thought that maybe it can be programmed to skip this stuff, but I haven't investigated. (I just did and found that you can either "never send results", or "ask me".)

Okay, other factors... 

• Despite the meter being small, the case is just as big as other meters have been. This is okay for me, because I always try to keep my Symlin pen with my meter, and it barely fits in the case. 
• The elastic strap that holds the meter in place is flimsy and cuts right across the middle of the screen. This is weird. 
• The zipper on the case opens in an unintuitive way so that whenever I unzip it, my meter is upside down. It's like you have to forget all you've ever known about books, left to right, and top to bottom.

Some good things...

• I like the color screen.
• The results are quick, once you answer the requisite questions and finish getting annoyed. 
• The test strip container is big enough for you to get your finger into the container and drag a strip out. I've had a few meters where you had to shake them out.
• The meter has a rechargeable battery that you can recharge less than once a month by attaching the USB connector to your computer. My other meters only needed batteries about once a year, so this isn't necessarily an upgrade.
• Accuracy? I tested this meter against my One Touch Ultra Link a few times and didn't find  much of a discrepancy. I think it may just be a reason to get users on board with the change, but in the end it probably isn't that significant, considering that the accuracy standards for meters are rather soft (+/- 10%). The change probably had more to do with business relationships and money than accuracy. Maybe I'm just jaded?

That's what I have on this. I'd be interested in hearing from anyone who has thoughts on this change. And if you know how to make it more convenient to operate, let me know...

Update: After messing around with the settings a bit, I was able to turn off the "before meal/ aftermeal" questions. Now I just have to test and send reading to my pump. It's not as annoying, but still kind of unnecesary.

An easy study...

Through myGlu.org I am participating in a study about infusion site changing and the length of time it takes before your insulin absorption is affected. It's a pretty easy study, and sometimes I wish I could explain why my glucose was high on waking up (eating dessert usually). But, it's one of those things that is good to see the trends and what might be going on.

They are only collecting info on when you change your site, your fasting BG, and your total insulin needs each day. Well, my food intake and activity is pretty variable these days, so it's hard to tell what trends are site related. Even so, I think I can see a pattern. I almost always change my site based on when I think my insulin isn't acting as effectively as usual. So, I'm already aware of the infusion site factor. I usually find this happens at about day 6-7. 

Summer Update

With the busy school year taking over my focus for the past few months I haven't spent as much time with diabetes blogging or even thinking very proactively about my glucose control. I guess this is going to happen sometimes. I'm glad to stay that I survived my first year of doing the high school yearbook, and a few days ago we submitted our final pages, and it's done.

On the blood sugar front, I've slipped into a more reactive management style. Just taking more insulin when my levels aren't quite right and not really wondering "why" as much. My consumption of some starches in the evening meal hasn't been working out that well either. I was getting away with it 6 months ago, and now it seems like it is one of the factors that throws things off.

Now that I'm home and have a lot of control of my schedule and activity I've noticed that my glucose climbs at different times of the day for no apparent reason. If anything, I thought that my insulin needs would have gone down in the low-stress, warm month of June. I think my basals need to be tweaked. I'm uploading my sensor and pump data right now, so I can analyze it.

Soon, I will write about: my off-label use of Symlin, the Contour Link meter, and a few other things I've been thinking about.

Something to blog about...

Yesterday around 9am my blood sugar started to climb. It wasn't that unusual, being morning and all. But, when it reached the 200s I started taking aggressive correction boluses, and I kept going with it till I got home from work. By this time it was 418 md/dL and I was feeling pretty lousy. So, I drank a lot of water, skipped dinner, replaced my reservoir, and changed my set.

While changing my set I realized what went wrong. The needle had broken off and insulin was no longer making it into the inside. And the needle? Yep, still inside. I'm going to see if it causes discomfort. I searched online and it doesn't seem like this is a very common problem. I have used these sets for years now and never had any problems with them.

Well, I'm happy to say by 9pm (12 hour tour) I was back to 123 mg/dL and was feeling pretty normal. The unresolved part is that needle that just became part of me. It made me considering taking a break from the pump for the first time in a while...

An unpleasant break in the routine...

On Monday I missed work, and I'm pretty sure it was the first time I've called in sick because of something remotely diabetes related.

During the night on Sunday my glucose level climbed to 350 mg/dL and I was awakened at 3:15am feeling overheated and clammy, and wasn't able to get back to sleep. I tested and took one of the largest boluses I've taken in a while. An hour later I was still in the 300s. Another bolus... and an hour later, with no real progress, I swapped out my infusion set and reservoir. By 5:45 AM I had been over 200 for several hours and was feeling truly lousy. In addition to the normal hyperglycemia symptoms, I was feeling nauseous and had no appetite. I felt like I had the flu. My stomach was gurgling and churning. I called in sick and started crafting my sub plans.
By 7:00am my glucose levels were under 200 mg/dL and I fell asleep. I slept for three hours and woke up feeling much better, with my blood sugar reading 130 mg/dL.

I'm not sure if a stomach bug caused me to go high, or if my infusion set wasn't working properly, but either way my symptoms were both gastrointestinal and high blood sugar. It was unpleasant and I hope to avoid it in the future. It made me realize that I am lucky that these type of complications don't arise more often.

CGM life

I use my continuous glucose monitor ALL the time.

I've found that, when I'm using it, I am more likely to head off rises before they get too high. When I hit 130 mg/dL I bolus and I'm able to turn it around. The days that I have taken a day off are almost always days that I spend more time out of range. All that to say, it's become one of my essential tools for keeping me where I need to be throughout the day. (Notice I didn't say night?)

However... it has caused me some problems too. It wakes up my wife at night. And, it's not to save my life. There are many unnecessary alarms at night, and they don't wake me up. The sound it makes is too high-pitched for me to hear. Carol hears it, and it completely interrupts her sleep. When I say unnecessary alarms, I'm not kidding... Normally the alarms that are waking her/us up are for calibration, low-reservoir, or low battery. It's the kind of stuff that can wait a few hours till morning.

Since these types of alarms are not "live-savers", I've chosen fitful sleep for both of us. A few months ago I discovered the setting called "silence all alerts". It's perfect. I set it for a duration of 8 hours and the thing shuts up completely till I get up in the morning. It's basically saved our co-sleeping marriage. But... I have to remember to do this every night before going to bed, and I  resent it. I feel like I already have enough pre-slumber tasks that I have to remember... take the dog out, lock the doors, turn out the lights, test blood sugar, calibrate the sensor... silence the alerts.

Here's what I think Medtronic should do to get this right:
I need a louder, lower frequency alarm, so that people with high-frequency hearing loss can hear it. The alarm is like a mosquito ring-tone that my kids can hear from the next room, and I can't hear from 2 ft. away. My students can hear it and I can't. If I'm in a noisy environment I don't hear it. To be honest, because it also vibrates, I don't really need to hear it. Most of the time, I've gotten the vibration alert, read the screen and then ignored it... and then it starts freaking out...

We should be able to choose time periods when we want certain alarms to be active. During sleep, I don't want petty calibration alerts to wake me. The data collected is not more important than sleep. I am glad I have the option to "silence all alerts" while sleeping, but I have to do it every darn night... and if I forget, I'm in trouble with my beloved.

The "new sensor" warm-up period is poorly timed. It requires a 3 hour warm up before calibration, and then asks for a second calibration in 3 hours. This means that if you start a new sensor, or re-start an old sensor, within 6 hours of going to bed (so for me, after 3pm) I will be awakened by another calibration request in the middle of the night. The only way I can get by this is by turning the sensor off until the morning, or silencing the alerts.

Oh, and also... I'm looking forward to not hitting large blood vessels with the sensor harpoon and dribbling blood for 10 minutes. It doesn't happen that often, but once every 6 weeks is often enough. I hear that the recent developments make this an outdated practice. I can't wait to get with the times. I'm patiently waiting for Enlite.

January- first 30 days of 2013

I'm going to report my summary numbers. I have gotten in to a routine with my diabetic management, and there haven't been too many surprises or discoveries lately. Well, maybe a few minor ones...

Average sensor glucose: 144 mg/dL.
Standard Deviation: 55
TDD Insulin: 30.8
Basal: 18.9

I stopped taking Alpha Lipoic Acid and Evening Primrose Oil. They are insulin mimetics which I have been taking for some time. I decided to stop taking them for a while because they are a bit expensive. I found that when I stopped taking them my insulin demands went up for about 4 days, and then settled back close to normal. I know there may be some other benefits to the supplements, but, for now, I'm going to see how I fare without them. I am taking very little beyond insulin and Symlin now.

I am a little shocked that I made it this far into a flu season without getting a cold or flu. At work I've seen kids out for a series of days quite regularly, so I know there are certainly some bugs going around. It's been over a year since I've had any viral stuff.

As I look at my sensor data I'm seeing some trends that show that I may need to look at my basal rates and make some adjustments. I think my higher trends are at the same times of day, normally around dinner time and afterwards. I'm noticing a dawn phenomenon trend as well.

At work they are offering health screening blood panels for free. I will probably participate because it will give me another metric to look at for a1c and whatnot.

My cardiologist recommended that I see his colleague for my recent six-month "check-up". It was like starting over again... he was looking at my condition like it was a brand-new mystery. He wants to confirm my diagnosis and has requested that I wear a monitor for 30 days. I'm fine with experiments and information gathering... but, if it's just for kicks? I think it's a bit inconvenient to wear a 12 lead monitor for a month just to confirm my diagnosis from a year ago, with no changes in treatment. So, I'm going in to get the monitor today... Also, how do you take a shower?

The medication they have had me on for the last year has been working well lately. It's a super low-dose and doesn't have any side-effects. I'm finding that when I don't have gluten in my life, I don't have any a-fib episodes. I'm pretty happy with the current program.

Getting Caught Up on 2012

I like to journal my data and numbers for my own benefit, but it looks like I haven't reported any monthly summaries since September. I know I have printed out data from my sensor/pump every month, but I just didn't realize that it had been 4 months since I compiled and reported.

I will report averages and simple data here, to get it done efficiently.

September
Average BG- 139 mg/dL
Standard Deviation- 49
Insulin: Average Daily Total- 28.2 units

October
Average BG- 138 mg/dL
Standard Deviation- 57
Insulin: Average Daily Total- 28.1 units
At Home A1c- 6.7 (10/1/12)
Lab A1c- 6.4 (10/19/12)
Post-bloodwork post from Oct. 2012

November
Average BG- 136 mg/dL
Standard Deviation- 48
Insulin: Average Daily Total- 30.8 units

December
Average BG- 144 mg/dL
Standard Deviation-52
Insulin: Average Daily Total-29.1 units
At Home A1c- 6.5 (12/18/12)

It looks like when you get a long view of the data it doesn't change as much as you would think. Sometimes during this period I crunched numbers and saw different short term trends, but by the time you get a month's data compiled all the upward or downward trends are leveled out. In the end, it appears that not a lot of change happened during these 4 months.

Other factors: 
Exercise- After returning to work in the Fall I have continued to go for a 20 minute walk after dinner. It has been helpful in countering an after dinner rise in glucose. During the past 4 months I have also done AM walks at the beginning of my day if my glucose levels were higher than 120 mg/dL.

Diet- I have found that between using Symlin and taking my evening walk I have been able to incorporate some starch into my dinner. If we have had potatoes or white rice I have had small portions  without seeing a significant rise in BG. Usually my bolus is for 30 grams of carbohydrate. For all practical purposes I'm still eating a very low carbohydrate diet.