My Symilin/ Insulin Routine

So, I've been using Symilin alongside my low-carb way of eating for over a month now and I think I have seen some significant improvements in my glucose control. It's taken a bit of experimentation to figure out what works best, but I had some good info to work from as a starting point.

Timing
I take my Symilin dose between 0-10 minutes before sitting down to eat. Once or twice I took it 20 minutes before eating and after a few bites the "satiety effect" kicked in and I didn't feel like eating as much as I had planned (another reason to bolus after the meal).When I take it close to a meal, I have about 15-20 minutes of serious scarfing before I feel full. Sometimes I don't even notice the satiety effect, but I just eat what I normally do and I'm done.

Food Consistency
It is helpful to eat roughly the same amount of protein and carbohydrate in my meals. I'm not even sure exactly how it measures, but I know what it looks like. For most meals I eat 4-6 oz. of protein and some green veggies or salad. If I eat a meal that is slightly different than this, I just use the same amount and plan to correct if needed. When I'm off, the surplus is usually corrected by an evening walk or a small correction 4 hours post meal. A few times I have used a larger bolus for a meal that seemed larger I have ended up getting lows post-meal. When I have had a more active day or am running lowish all day, I will bolus even less.

Insulin Dose Consistency/ Timing
For this average amount of food, I take 1.8 units of Novolog and spread it out over 60-90 minutes with a square bolus. I change the timing post-meal depending on what my starting BG was. If I start a meal over 100 mg/dl I will take it a bit sooner, sometimes even right after a meal. But, if I start a meal at 70-80 mg/dl I give the food plenty of time to start to bring my glucose up and then take the bolus. This would normally be about an hour post-meal.

Taking Symilin After a Meal
A handful of times I have eaten a meal without taking Symilin (because it wasn't with me at the moment) and I have taken it post meal. I didn't notice any difference. I think the low-carb meals are already slow to impact glucose, so there seems to be some wiggle room there. 

Symilin Lows
I have read about people having lows that are hard to correct when using Symilin. The reason they are uniquely tricky is that when your digestion is slowed down, it can be hard to get glucose to be quickly absorbed when correcting a low. This knowledge made me very cautious about my insulin dosages while using Symilin. During the first 2-3 weeks using it I was running my BGs higher than usual out of caution. Over time, I have found that my modest doses of insulin do not cause extreme drops, with or without Symilin. The lows I have had in the 50-60 mg/dl range have been easily corrected with 1-2 glucose tablets. The sugar was absorbed normally, and I saw improvement quickly. I think that a low-carb way of eating helps to avoid some of the risks of difficult hypos because the boluses are kept small.

The results have been good for me. I have had rather flat post-meal numbers and I have been able to reduce my total daily insulin. I'm using about 10-20% less insulin.

FastClixing (a longish post about something I didn't know I cared about)

During college in the 90s, I volunteered to be in a diabetes product study group, and the topic of discussion was lancets. We showed up at a hotel conference room in Orange County for a discussion. I was sitting around a table with a bunch of other T1 diabetics (pretty neat) and we were giving our feedback about bloodletting. I distinctly remember two people in the study. One guy was a bit whiney and kept on saying that he didn't like the blood extraction process, because it hurt. He hated being poked. Another older gentleman, more of a cowboy, said he didn't care about anything, except, that it was easy to get blood out of his finger. I was just happy that we were being asked, but I didn't think what we wanted made much difference. These devices pierce your skin and make you bleed, and that's just what they do. I was more on the side of the cowboy, and didn't want to have to milk my finger too much to get a drop of blood out of it.

It wasn't too much longer that we saw varied depth, alternative site, lancing devices, and even thinner lancets come onto the market. I guess they heard our whines.

So, in recent years I've never really thought about my lancing device... I just used it. Whichever one I had... I used whichever one came with the meter, or migrated from another meter case. Like many people with diabetes, I change my lancets maybe once a month, when it seems to hurt more than usual. I have never had an infection on a test site on a finger. Have you?

Enter FastClix... my new meter came with a FastClix lancing device (lancer?). I mentioned in a previous post that loading the lancets and starting to use it was different. I think it is well designed and functions well, so I will highlight a few things I like about it.

Six lancet drum
It seems like a rotating drum of 6 lancets like that would be massive and bulky, but they've squeezed 6 pieces of thin, skin piercing tips into a small package. It is only barely larger than your normal lancet, and contains 6 fresh stiletto type lancets that pop up when needed. Even better, they load in and out of your device without exposed points ever being seen or touched. Clever.

Lancet changes
To change tips you slide a lever across, and, voila, you have a new lancet installed. So, if you continue to change them once a month, you might find yourself only thinking about replenishing lancets a couple times a year. Then again, since it's not a pain anymore, you might do it more often. I've already switched to my second one, and I've only been using the thing for a week. 

Lancing Depth Options
It has 11 depth options (shown as .5-5.5). The instructions suggest that you start with 2 if you have "soft skin". Since I don't really use the pads of my fingers as much, I qualify as a soft skinned fellow. I was using the 1.5 setting and getting plenty of juice.

Fast
Something about the way it touches your finger is gentler and faster than other lancing devices. It doesn't have the same type of blunt force that my previous lancing devices have had. It's hard to describe, but I've always felt the device throwing it's weight around inside the chassis and my finger was always receiving that tiny slam.

Pain
This is the sneaky part. I thought any method for making a hole in your finger that would bleed sufficiently would pretty much trigger the same pain receptors. Not true. I was shocked the first couple of times I used it, I barely felt the thing graze my skin and it made a nice bleeding hole. It was like witchcraft.  Every time I used it I would mentally say, "Cool!"

Design
There are two design points that I want to compliment the FastClix engineers on.

• First, the raised dot where the lancet needle emerges. You can take that little nub and place it against your finger, and by feel, you can have the hole show up exactly where you want it. Sometimes in the past I would try to lance a certain area of my finger and then be surprised to see the blood come out 1/8 inch away from the expected spot. Kind of like drawing on a touch screen device, you can't see what you are doing because your finger is in the way. 
• Next, you both cock and fire the device with one pressing motion. It's pretty cool. If you've ever pressed the "go" button on another lancing device and had it just sit there, you know it's annoying to have 2 tasks to complete to get your drop of blood. For instance, if you are driving, stopped at a stop-light, and you test... one extra step is just kind of annoying.  I never really thought it was too bad, until I found out that it could be better. It's better.

That's it. I'm starting to think that different lancing devices can make the invasive act of blood sampling much better. Not, a life-changing deal, just a tiny quality of life bump up.

Meter madness, jumping to conclusions...

I'm a little excited about the new meter because it came with a lancing device that has been highly reviewed by other glucose checking enthusiasts.

The Fast-clix* lancing device is pretty different. It has a rotating drum of lancets that allow you to change lancets with the flick of a switch, and unload your lancets without exposure to the sharp points. And, you can prick your finger in one easy motion, without "cocking" the device. It is so fancy that I couldn't get it set-up and use it without reading the directions... that's pretty special. After doing this finger poking thing for 25 years or so, you'd think that any device that came your way would be super simple to figure out. Well, this one required just a tiny bit of study.

So here's the creepy bit... (what does this number mean?)

My sensor was reading 170 (post french fry experiment). I Accu-cheked with the new meter and it said I was 240. I was pretty surprised to see such a difference (and, of course my mind went wild wondering if my meter that I use for calibration has been wrong all along, and I've been running 70 points higher for the past couple years).

I tested again, 204. Not good, that's still a decent difference from the CGM and the previous test. I tested again, 213. I took that one as my correction number and delivered a correction.

So, maybe an hour later, after dinner, I test again, 129. That was a fast drop, eh? I still have 2.5 units on board. Did I overdo my correction? I haven't even bolused for dinner yet, maybe I won't. Oh, that's right, when I was over 150 in the late afternoon I turned my basal up, and that's probably what's causing the faster drop. All this with a new meter in my life. 

With this new paradigm, I realized that my CGMS sensor is only as good as the meter that calibrates it. I sometimes wonder if my meter is entirely accurate (which we all know, they don't really have to be), and what impact it would have on my overall control to have a legitimately accurate calibration a couple times a day. Just something to think about. It's probably even worth letting integrated devices slip away, if they aren't accurate enough.

Recently, my sister (hi Ariana!) was trying to sort out some glucose mysteries and discovered that her meter was totally erratic and inaccurate. Well, that is not helpful when you are trying to respond to immediate problems... She got a new meter, and I hope that it offers a fresh compass in her quest for good glucose control.

This whole thing brings up a new question... I had been finding that I wasn't feeling any signs of hypo when I got down to 70s and sometimes 60s, when I was using my integrated One-Link meter. Today, I've been at 70-80 (according to my new meter) and I've been noticing my regular symptoms for hypos. It makes me wonder if I've been running higher than I think, all the time... if I calibrate my sensor off of a meter that runs high... and my data is all skewed downward. You wonder more...

My last at-home A1C was 6.7, but, my average blood sugar, according to my sensor had been 133 mg/dl. So, I would expect a 6.3 or so. Maybe my A1C is really telling me that my meter and sensor readings have been bogus to some degree. Maybe I really was averaging 15-20 points higher and never really getting close to hypos, ever. Always something to think about...

Just when you think everything is amost predictable...

Lately I've been reading other d-bloggers talk about their struggles with things like insurance coverage issues and meter accuracy problems. For the last couple years I have been out from under that cloud and pretty content with the material/supplies/equipment side of things. I've been cruising along with my One-Link meter that talks to my pump, and my supplies were being auto-shipped monthly. I was getting 8 strips a day, and normally didn't even need all of them. Then I started using Symilin... and more test strips.

When I ran out before the next shipment arrived I called my doctor to get an Rx for the local pharmacy. Following some phone-tag I had a an order being filled. After I picked it up, I got home and realized that they'd given me Accu-chek strips. Hmmm... must have been a communication problem with nurse at the doctor's office. I went back and asked if they could switch them. Yes, but your insurance doesn't cover One-touch strips here/anymore.

But, that's what works with my pump integrated meter....

It looks like I will have to exclusively get my One-touch strips from Medtronic from now on. And if I need more than 6 strips a day, I will need doctor authorization, etc.

So, what do I do today... with no strips, and no insurance coverage for the ones I use?

First, I thought of buying One-Touch strips with my flexible spending account, which is my own money. Even a small amount of strips to get me through the week would cost me dearly, they run about $1.50/ each these days. After some waffling, I finally decided that the economical move would be to take the free strips (and meter, and lancing device...) from Accu-chek and just input the readings manually until I could get some strips from Medtronic.

So, now I have a new toy. The Accu-chek* Aviva plus, and a Fast-clix* lancing device. I will write about my adventure in adapting to them shortly.

*By the way, what's up with Roche's insistence on spelling their model names so stylistically. I had concentrate to type them "correctly".

weekend basal tinkering, etc.

I've always known that the differences in my weekend sleep schedule should warrant some sort of change to my basal insulin routine, but I never had results that were consistent enough to really work off of. I'm starting to see what I can do differently.

Normally I get up at 5am. In order to counteract dawn phenomenon I have my basal higher by .3 units (approximately) from 2am to 6am. I've been finding that on the weekends if I sleep past 5am, (which I always hope will happen) my blood sugar starts to drop because the DP hasn't gotten rolling as usual, so I'm heading low by 6am.

This AM, for example, I woke up at 5:49AM with an alarm from my CGMS saying that I was 70 mg/dl, but I was really 52 mg/dl. I'm thinking that my solution may be pushing everything forward about 2 hours and seeing if that fixes it. Sleep two hours later, correct DP two hours later? I'll try it tomorrow. (The good news: dropping very slowly and scraping the 50s didn't cause me to have a rebound day.)

Other basal musings:
 Also, I think I've become more sensitive to insulin, so I may need to reduce my nighttime  basal overall. I've been waking up at the low end of my target range during the past week or so.

I have to say, I sleep really well when I'm in the 70-80 range, when it's stable. Probably because that's close to standard fasting BG for non-diabetics.

This graph looks so organic and biological, and my basal rate looks clumsy and geometric in comparison...

Ever since I saw this graph in Think Like a Pancreas, I have wanted to see if I could get as close as possible to the natural basal rate that is observed in human biology. It's fascinating to see that everyone basically has the same rhythms taking place in their system, based on age and time of day. It doesn't seem as much like a guess anymore when you see this average graph. My standard basal rate is fairly close to the dark square plot right now, and it's working for me.

One more thing... it's taken me a couple years to figure out all the features in my pump and CGMS. One of the things I started to use recently is the "silence alerts" feature when I'm sleeping. The alerts that I don't care as much about are the high alerts. If my BG is highish overnight, I normally have already taken the correction and am just waiting for it to take effect. I don't need to be reminded hourly that I'm still out of range. My "high" limit is set fairly low, so it can be annoying to have it tell you when you near or cross the 150 mg/dl line. I have hovered at 150 for hours before and gotten alarms constantly.  With "silence alerts" you can silence only the lows or only the highs, or all of the alarms. I find that silencing the "highs" for 7 hours during sleep allows me to only be awakened if I'm having an unexpected low. Carol has appreciated the reduced disruptions to her sleep as well. Even when the pump only vibrates, she is aware of it. Little tweaks like this can offer surprising improvements to your quality of life.

Diabetes TrialNet

TrialNet sent us lidocaine dressings to reduce pain. It might have worked?

I joined a Clinical Trial and it includes having my three kids tested for auto-antibodies. The TrialNet people shipped me a test kit, and told me which lab to go to. Since the lab is only open on weekdays, I waited for a day when I needed to stay home anyway, and took them.

They were very nervous to get their blood taken. They don't remember ever having it done. All week long they were asking questions about the process and shuddering when they considered it. I was calm and upbeat and reminded them that I do it all the time. "Well, Poppy, you are brave."

When we arrived at the lab the person behind the counter wasn't happy to see us, AT ALL. She said many things, trying to scare us away.

"Three kids?" (heavy sigh)
"I've never heard of this kind of thing before." 
"You should have made an appointment." (raised eyebrow)
"We don't do these tests here."
"I'll have to call my supervisor. "
"Did the kids eat today?" (raised eyebrow)
etc., etc., (disapproval all around)

It was pure attitude and lots of tension. I'm trying to convince my kids that this is going to be a smooth and easy process and the woman was making it very clear that we are not welcome, and everything was wrong. But, I have to say, we followed all the directions we were given... so we stuck with our plan, and she had to get on board.

After she called the clinical trial people and got everything clarified she invited us into the room to have blood drawn.

Ellie stepped up, rather reluctantly. She took a seat and got through it, felt a bit faint afterwards. She did great.

Simon was next. She had a hard time finding his vein and had to poke around on his left arm (poor guy). He was trying to be brave. A few tears came. She had to do the other arm. He started to cry. I stood up close with a hand on him, and tried to comfort him. By the time it was over, I realized that I felt queasy/sweaty myself from the situation, and thought it would be really silly if I were to crumple on the floor. I sat down for a few minutes between kids to make sure I was feeling normal. I swear that getting the three of them through this was much harder than anything I've had to endure over the years myself.

Penny was really nervous after seeing how things went for Simon, but she did fine and we were DONE.

Phew! I looked my CGMS display and since I had walked into the office my BG had shot up 70 points. I think that would be stress/adrenaline...

The kids noticed the irony, but, their reward for being so brave and compliant was that I took them out for ice cream. Diabetes auto-antibodies test = ice cream = yay! I had a nice coffee with heavy cream and enjoyed just sitting in the sun with the kids and talking. They are fun people.

What now? Well, the lab Fedexed the test vials to the clinical trial people and they will get us the results in something like 4 weeks. If anyone tests positive for auto-antibodies we might have access to preventative measures to reduce the likelihood of beta cell decline. Personally, I would also consider an auto-immune protocol from the Paleo/ Primal camp to make sure the immune system is nice and relaxed about everything. 

Foraging for breakfast

Yesterday I needed to stay home from work to take care of my kids and it gave me to the opportunity to have a leisurely breakfast.

As I explored the yard before everyone woke up, I noticed that the rapid weed growth had yielded some wild edibles in fringes of the yard. In my yard the main two edibles are Lambs Quarter, also referred to as "wild spinach", and dandelion.

I gathered a bowl of them and tossed my egg on top for a fresh breakfast salad. I remember talking to someone recently and was perplexed when they told me that they had never/ would never eat something straight out of a garden, because it creeped them out to think of it growing like that... Huh?

Well, I got my garden started about 2 weeks ago, but until it starts to produce sometime in June, I'll snoop around for edible weeds that popped up during that warm spell in March. There are a lot of things that I mainly only eat if I see it attached to the ground. Like cucumbers and  tomatoes...

Strawberries around the edges, and brococoli, onions, etc.

The kids will eat all these before they make it to the kitchen.

Warm spring temps have the hops already topping off the trellis.

Let's talk about satiety and food

I googled "lots of food" and found this gem of an illustration.

One of the benefits of Symilin is that it is supposed to give the user an increased sensation of satiety after eating. In fact, Dr. Bernstein really only prescribes it for patients that struggle with overeating at a particular meal, or over-snacking at night.

For me that didn't seem like a big deal. I eat protein and fat in quantities that are supposed to guarantee satiety. But did it work for me? For the past several years I thought it worked... but, looking back, I rarely felt totally satisfied after eating. Even after feeling full I'd snack at the table, finish things off my kids plates, and sometimes eat more as I cleared the table and packaged up the leftovers. I thought the feeling of being painfully full was "satiety" and also somewhat normal.

Now that I'm taking Symilin I'm feeling a new sensation at meal times that is totally new to me. It's not pain, or nausea. It's just feeling like I don't need or want to eat another thing. My stomach may not be bulging with discomfort, I just don't want to eat more.  I'm gaining a new understanding of what satiety might feel like and it's pretty interesting. Amylin is the hormone that sends satiety signals to your brain, and I think I've been missing them for a long time.

As I thought back through on my personal history, I remember being the wirey diabetic teenager that could put away an immense amount of food. My friends used to comment on how surprising my food intake could be for a 140 lb. skateboarder. I think I had a hard time feeling satisfied, and could always eat more. One time I told my own kids that if they ever caught me with leftover food on my plate at the end of a meal, I'd give them $5. I thought I was such a model citizen. Well, the only reason I could give that guarantee was because I was always hungry for everything, and more. These days I could not make that deal*. It's strange... but, I'm getting used to it.

*our daughter Ellie has learned the effects of Symilin, and now every time I announce that I can't eat another thing, she sings the "Sy-mi-lin!" jingle she created for those moments. It's become our dinnertime joke.

A cracking burger, improved...

We like to cook at home, and one of our family favorites is (big surprise) hamburgers. This past year we started using Jamie Oliver's recipe for A Cracking Burger which is a bit like a meatloaf burger. (recipe from Jamie's Food Revolution)

Along with your ground beef you add dijon mustard, cracker crumbs, flat leaf parsley, and an egg. The burger is very flavorful, and on the grill it holds together perfectly, forming an almost crunchy crust. It was one of the best burgers I'd had in a long time... but, there was a problem. The added cracker crumbs were enough to make my glucose levels after the meal harder to predict. I noticed that I always went high after eating one, even when I ate one by itself for lunch leftovers. I had to return to regular burgers.

But, as I looked at the recipe and figured out that the egg was the binder, the bread crumbs soaked up some of the extra liquid. I decided to try chopped mushrooms instead of cracker crumbs to soak up some of the extra liquid. I knew that their meaty flavor might blend in well and maybe even add some moisture and umami flavor. They turned out really well and the whole family liked them just as much or better than the original. So that's our new umami burger, thanks to Jamie Oliver and a little step away from the gluten/wheat.

1 lb. ground beef (grass fed if you can get it?)
1 Tablespoon Dijon Mustard
2 Tablespoons chopped flat leaf parsley
1/2 teaspoon salt
crushed black pepper
1 egg
1 cup chopped mushrooms

The burger mixture is still a bit stickier in texture when you are forming them, but once they are on the grill they form a nice crust and flip easily.

39th April- Some numbers, some thoughts...

One of my birthday dinners, 39 feels pretty good.

Let's see:
BG average for the month-
one place in my data says 133 mg/dl
another place in my data says 125 mg/dl

I think the 133 mg/dl seems more reliable. It's paired with a standard deviation of 44. I think my experiments with Symilin have given me greater margins for highs. That's fine, it's been a safe ride.

I've been using an average of 30 units per day, with my basal and bolus ratio at 65:35. 

I took an at home A1C and it was 6.7. Maybe some of those real highs skewed the average up a bit. It's still a fine result for me. As I've said before, the sensor data is 10X more useful than an A1C at this point.

I've been writing enough about my Symilin experiments. I probably won't say too much more about that. It's been an interesting and worthwhile experiment. I am up to the 60 mcg dose and haven't had any groovy gastro symptoms.

I had 3 different opportunities to feast this month, and they were fun. Of course, eating a bunch more than usual always creates new challenges, but I try not to let it slow me down too much.

My nighttime basal seems to be right on. If I got to bed with a normal reading I'm staying flat all night and waking up 80-100 mg/dl. I don't want to jinx it. Having a 1/2 unit of insulin with my coffee in the AM seems to keep it from throwing things off.

Other stuff:  I had been having very few arrhythmia events for most of the month, but lately they have become more frequent. After having one episode for almost 24 hours this week, I'm a little discouraged. I think that it may develop into something that requires some other medication or treatment. The beta-blockers don't always seem to do what they are supposed to do. I can live with it sporadically, but it's not the best thing to have going on. It doesn't seem to be exercise, alcohol or caffeine induced, but I might try cutting out those things one at a time and seeing what happens. I have been consuming more gluten than usual, mostly in the form of beer... hmmm.

Symilin: Ale, Potatoes & Pie Experiment

My wife makes beautiful, tasty pies. I love them.

I have had pretty good results calculating my meal boluses with Symilin and avoiding hypos. In fact, I've been rather cautious to a fault and have had some high post meal sugars (but, no lows). I couldn't help but wonder if it might be possible to retain better control when eating a high carb meal if the Symilin slows down digestion. For my birthday dinner I decided to give it a try.

For celebration/experimentation carbs: I had a beer and ate two crispy, roasted, smashed potatoes (awesome!) with dinner, and then for dessert I had a small slice of strawberry-rhubarb galette with vanilla ice cream. All in the name of medical experiments, right?

Admittedly, being a low-carb eater for so long has made me pretty poor at estimating the potency of fast acting carbs, AND I've become more sensitive to them. All that said, I calculated my carb count at about 60 grams, minus 25% for Symilin factor, super conservatively... 45 grams. I bolused for it on the 2 hour square bolus. I was heading to a symphony concert and would rather run high and need a correction, than have a persistent hypo that is difficult to correct while in public.

Well, any worry I had was unfounded... before the concert had even started my glucose was climbing at a rapid rate. I hit 350 mg/dl before all was said and done. However, before I chose to correct, my square bolus insulin was already turning things around, but it was way too late... The amount left "on board" wasn't enough to really finish the job... My corrections ended up being equal to my original bolus I had taken with my meal. I probably could have bolused right after the meal ended with a normal, "fast" bolus.

So, for me, Symilin didn't really allow me to get away with anything new, that day. I would have to practice the timing over and over, to get it right. It's just like any other insulin/food regimen, I guess.

I don't plan on adjusting the way I eat. I already get pretty slow rises from my meals, and Symilin causes them to be even slower. Not a big deal... I consider my real benefit from Symilin to be the reduction in glucagon activity while eating. It allows me to have lower and more effective insulin dosing at mealtimes.

At almost 3 weeks, I'm getting a feel for how things work in my system. I'm starting to be confident with bolus timing and amounts, and I'm getting flatter graphs after meals. I'm starting to believe that the risk of hypos is pretty slim with small 60-90 minute boluses.  I think if I were eating a higher carb diet I would have a more difficult dynamics to sort out, because the variables would be larger and more extreme. But, a lot of that has to do with what I'm already used to.