Symilin (part 3): week 1

 Summary:
I've been taking Symilin for 7 days and have had a pretty good week with it. I have used it with every meal. So far, I have worked my way up to 30 mcg. Yesterday I could have stepped up my dosage to 45mcg, but we were planning a large celebratory meal and I didn't really want to risk not being able to eat everything due to a premature satiety. I have read online that some users are more sensitive to it than others, so not everyone ends up taking the full dose. I might be one of those. If I stop seeing the same benefits at the current dosage, I may take it up a notch.

Observations:

1. I have not noticed any stinging when injecting Symilin, (which some users reported). 
   
2. I feel full and satisfied after eating.  I'm likely to eat a bit less, and feel totally full. 
3. The "full" feeling is absolute. I couldn't even drink the 2nd half of my beer after dinner. Done. 
4. My blood sugar stays virtually the same from the beginning of the meal till about 1-2 hours afterwards. 
5. If my insulin dose wasn't quite right, it's the 2 hour mark that it starts to show. 
6. The changes in blood sugar are much slower. 
7. My meal bolus needs to be taken at the end of the meal or within an hour of starting.
8. The meal bolus needs to be about 60-70% of what I would normally take. 
9. The meal bolus needs to be stretched out 90-120 minutes.
10. It might cause a sleepy feeling after meals. I have other factors that contribute to feeling tired, but it could also involve Symilin. 

The main benefit I was looking for: 
I have been able to eat large, protein meals without seeing the glucagon rise that I normally experienced. It is still hard to get used to, because it always seemed like a price I had to pay for eating a larger whack of meat. I still see a small rise (30 points) later on from gluconeogenesis, but honestly, I like seeing a bit of feedback letting me know when the digestion happens. The times when it's been entirely flat it's kind of spooky because you aren't sure if you are about to go low...

So, that's where I am so far... I'm looking forward to teasing out a few more personal facts about how Symilin works in my system. I'll be summarizing the month of April in a few days.

fish tacos back on the menu

I just made crispy fish tacos. (There are no photos because we ate them so quickly.)

I hadn't had them for a long time because the breading always messed with my BG control. This time I was able to overcome that issue by using pork rinds to do the breading.

I fried up the tilapia wedges in bacon fat and the crushed pork rinds made a perfect crispy coating. We had a purple cabbage slaw with a dressing made with sour cream, chipotle adobe and lemon juice. I have to say, it was delicious and the fish was crunchy and tasted great. The kids were all about them. I forgot to make a NorCal margarita. Oops.
P.S. I love tilapia. The remaining fillet is becoming ceviche as I type.

I hadn't seen this, but it explains a lot about Amylin.

http://www.themissinghormone.com/

Very much, a science class film...

It's interesting to see what might happen with a triple hormone application for better regulation of glucose. I like the term "glucose homeostasis". Sounds fantastic...

Symilin (part 2): low-dose + thai food

As long as we're talking aobut food... last week's grilled chicken.

We showed up for the last night of the special Thai New Year menu at our local restaurant. We were able to get in on some rare, small dishes that you don't normally see. They were small plates of the festive foods you typically eat around Thai New Year. In this case, Happy 2555!

I tried Symilin last night in a typical situation where I get high blood sugar after a meal. I went in with a BG of 115 mg/dl and 15 mcg in my system. I had a beer and ordered tom car, pork satay and a red curry tilapia dish. We also shared a green papaya salad.

I did not bolus at all upon sitting down. I wanted to make sure I was rising before I did anything. I ate my entire meal and began feeling rather full and my BG hadn't budged at all. It was stuck at 117 mg/dl. for over an hour of eating and drinking. Usually, if I sit down and eat, I get a rise at the same time as I begin to feel full. It was surprising for me to see this on my CGMS because I consumed a decent amount of liquid carbs, beer and soup. The soup was a very flavorful spicy, limey, herbal, coconut milk soup. But... you can taste sugar in it's backbone.

Well, the anomaly only lasted a little while. I had a fairly fast rise from those liquid carbs, eventually. Before I had a chance to see a rise on my CGMS and bolus, I was already way up. When I got to the car my BG was 160 mg/dl  on the meter and rising, but my CGMS was still hanging out at 117 mg/dl (for a second there, I was mad at my sensor). So, it had to have happened fast. I did a correction bolus instead of a meal bolus. My sensor did finally catch up with my actual BG, so it wasn't in the doghouse anymore. Two hours later I took another correction bolus and went on the elliptical for 15 minutes. The correction worked and I was back to 100 mg/dl by 10:00pm.

I was worried about my overnight numbers going back up, but I stayed 80-90 mg/dl all night and woke up at 78 mg/dl. Seems like it worked out. 

All in all, the excursion was my only one for the day, and my numbers for the day were okay. I think I'll have to have more confidence to bolus and head off fast rises like that, but I don't typically drink beer and eat sweet soups. And, I'm still studying the effects of this peculiar hormone...

Average: 108 md/dl
Standard Deviation: 38

Trying Symilin (Part 1)

Yesterday I picked up my Symilin pens and started using it.
Here are a few facts, since I can only minimally report actual results... I'm still on the ramp-up dose.

Cost:
I received 4 pens that are usable for up to a month each. Depending on the dosage, this set will last me for 2-4 months.  They cost $1159, and my co-pay after insurance was $50. So, it looks like it will cost me about $10/month, and my insurance is paying... A LOT. I don't know what my final dosage will be, I'm guessing I'll go through about a pen a month. This comes out to $279/month. When you add to that my pump supplies and sensors, it's a very expensive monthly routine. Shockingly so... If I didn't have insurance, I wouldn't entertain this experiment at all. So, out of respect for that expenditure, I'm planning to follow through with the trial to see what it has for me.

I guess the million dollar question is whether it will create significant improvements to my blood sugar control, and quality of life.

I will predict some pros and cons to using it.

Potential Pros: 

• Stopping after meal rises from glucagon
• Slowing down how meals hit my system so that corrections can be more effective
• Using less insulin
• Getting something closer to a normal metabolism

Potential Cons:

• Taking injections and carrying a pen around again
• Running higher blood sugars because I have a new variable that makes me nervous about hypos
• Hypos
• Another variable
• One more level of translation: translating protein into equivalent carbs, cutting it roughly in 1/2,  assigning an extended bolus, for a meal which is slowed down by Symilin (kind of complicated, lots of places to miss something). 

The doses:
Since yesterday I have used Symilin three times at the lowest dose, 15 micrograms. I understand it is equivalent to about 2.5 units (although I've also seen it converted into 1.5 units). Because I'm using it directly from a pen with set dosages, it really doesn't matter, it's just a clearly different measurement system. For some diabetics the higher number sounds kind of alarming because it sounds like you are injecting a large amount of material, but you aren't. If I get to the maximum dose for my pen (60 mcg) I'll only be taking 10 units.

Each time, I did notice a sense of satiety post meal, which stayed with me for a long time. I gave my insulin bolus at 50% and spread it across 2 hours. During that time, there was no rise, but later on I did see a subtle rise in the 3-4 hour window. I may need to give the bolus over a broader window of time.

Caveat: It's hard to be absolutely sure what's doing what, because I'm out of my insulin mimetic, Alpha Lipoic Acid Sustained Release, so I'm off my normal routine. I have upped my basal by 30% to compensate for it, but the results are a little squirrelly. It's hard for me to tell if my overnight rise is a really delayed meal rise or just my basal being insufficient. When my next shipment of ALA comes in I'll be able to do these tests on a more comfortable playing field. The thought just crossed my mind, that perhaps it would make sense to phase out my use of ALA. The expense of the supplement is about $1/day.

Conclusions from my 3 small doses of Symilin: 

• It seems to hold off digestion for a while. 
• It did not cause nausea for me. 
• I didn't see the typical glucagon rise that I usually get after a protein/fat meal. 
• I was gun-shy on meal boluses (3 units for the day), but made up for it in corrections (4 corrections totaling 6 units). My bolus insulin for the day ended up about the same as usual.

Next, I'll move up my dose every three days, unless there is nausea.

Dr. Phil's perspective...

(I don't really call him doctor Phil, but his first name is Phillip. I think he's a pretty cool guy, and he's been my dcotor for 12 years.)

I saw my doctor today. I had blood work done a couple weeks back and this was a follow-up appointment.
I was somewhat anxious to see what he would choose to do about my irregular TSH reading. I called his office shortly after my lab work and asked the nurse if he would want any more labs done related to my thyroid function. I was thinking T3, T4, Reverse T3, anitibodies.... He didn't.

So, today he told me that he wasn't wanting to "jump to treat" the thyroid situation because he wanted to see that my levels were progressively climbing. The tricky bit, is the fact that adjusting my thyroid activity might impact my heart arrhythmia. Personally, I think it's all mixed together, because taking beta-blockers can be a factor in hypothyroidism. I've developed this irregular TSH reading since being diagnosed with atrial fibrillation and taking beta-blockers. Hmm...

During the time that I was waiting to see him I ordered a supplement that is highly reviewed for supporting thyroid function and balancing metabolic activity. I have been taking it for about a week and I think it has helped. I know it's effecting me in some way because I'm noticing that my energy is better and I noticed a few more brief episodes of arrhythmia in the first couple days I was taking it. Those have tapered off, and I'm feeling fine.  I'm taking less than the recommended dose because I don't want to take more iodine than necessary. Selenium is also included and it has been shown to reduce the presence of thyroid antibodies.

So, on other fronts... Dr. Phil was happy with my a1C (6.3), but mostly because we reviewed the sensor's standard deviation for the past 2 weeks. My sensor data showed an average of 125 mg/dl with a standard deviation of 28. This means that my general pattern has me between 111 and 139 mg/dl. With no hypos, we were both happy with it. He said he didn't think there would be much benefit to getting my A1C any lower. But, if I can do it, I'd rather get it as close to normal as possible.

I asked him to prescribe Symilin and he did.

He said he has had about 3 other patients who have tried it, but all of them didn't like it and went off of it. He said they had been proactive and asked for it, but the side-effects didn't agree with them. I'll see how I do with it. I also got an Rx for a glucagon emergency kit. It was recommended as a precaution when using Symilin. I haven't had any serious lows, but it's good to be prepared if you do have one. Especially, if you are trying something new.

BG target balance: Basal or correction?

Rockclimbing shot, photos make blogs more interesting...

 Lately, my blood sugars have been surprisingly stable all day long. I've found myself looking at my CGMS and seeing 110 mg/dl, most of the time. And most of the time my meal boluses are hitting the mark. So, I'm trying to figure out what to tweak to make it so that my foundation is a bit lower. I'd like to lower it to 90 mg/dl without messing up the stable part of it.

Should I use a slightly higher basal rate, or just correct a bit further to get them stable at a new level? I'm not sure if my stable spot is being set by my target and corrections, or the basal amount matching liver glucose exactly.

I have tried  more frequent (tiny) corrections, but I just seem to stay right there at the same level (110 mg/dl). I made a minor tweak to my basal (increased .05 in the middle of the day), and I think in the next few days I'll notice whether it made any difference at all.

Update: It's day one with the new basal, and I woke up at 71 mg/dl, but there are other factors at play. It's always an interesting puzzle. 

High profile praise for Dr. Bernstein's methods

Of course, it's heart-warming to read about how this semi-famous fellow lived a life of adventure with photography (one of my vocations and hobbies) AND Type 1 diabetes. Clearly, even diabetics have lived extraordinary lives...

I suppose we can all survive, but we don't always thrive. What always gets my attention is the story of how someone, after years of struggling with the disease had a breakthrough, and was able to tangibly improve their life with diabetes.  In this case, the pivotal point in his diabetic control came from meeting Dr. Richard Bernstein. Through Bernstein, Roger Ressmeyer was introduced to the "rule of small numbers" and began partly controlling his diabetes by eating a limited carbohydrate diet. Ressmeyer also uses an insulin pump and CGMS. I feel like my best results have been possible once I had that trinity working for me. I relate to this man's "pivotal breakthrough" in his diabetes journey.

While Dr. Bernstein is critical of insulin pumps, I feel that using one has really helped me to take my control further. Dr. Bernstein's methods usually require simplifying things and eliminating variables. The pump might bring more variables that sabotage your results, but, with some diligence, and careful fine-tuning, it can be a tool for better control and flexibility.

Anyway, I'm glad to see Dr. Bernstein getting mentioned in the media. I know he's a well-known (and sometimes controversial) figure in the diabetes community, but I wish that his extensive personal knowledge about managing diabetes could help more people who struggle with getting the best results, and recovering health. His insistence that all diabetics can achieve normal blood sugars is bold. But, it's these kind of high standards of medical care that we need in a world that has been talking for decades about an "imminent cure".

My Most Useful Book List

Some of my favorite books about managing diabetes, and strategies for eating with diabetes:

1. Diabetes Solution by Richard K. Bernstein
2. Think Like a Pancreas by Gary Scheiner
3. Your Diabetes Science Experiment by Ginger Vieira
4. Pumping Insulin by John Walsh
5. Nourishing Traditions by Sally Fallon
6. The Rosedale Diet by Ron Rosedale
7. Primal Blueprint Cookbook by Mark Sisson and Jennifer Meier
8. Paleo Solution by Robb Wolf
9. Why We Get Fat, and What to Do About It by Gary Taubes

I plan to review some of these resources and describe the ways I have found them useful. I have been impressed with the most recent updates to many well known books. The developments, research, and understanding of metabolism has moved forward and the latest versions are worth checking out.

Surviving the Feast Days

I am pretty disciplined with my diabetes.
But, there are always times when you allow yourself to "go off the reservation" a bit and embrace a little chaos. In fact, in my last few relapses of poor control, it was really just a stringing together of these kinds of justifications that led to an extended hiatus. "Oh, birthdays and ice cream only come around once a year..." "Well, we are out for dinner".

I do really well with my daily routine, but when there is a "feast day" of some kind, extended family, booze... it all gets kind of whacky, and no matter what, I end up with an evening and overnight of high blood sugar, even without serious missteps. Here's the thing... I eat too much of whatever I eat. Low-carb, no-carb, I just eat too much because it's a celebration and it's fun. This eating too much thing is really my problem. My stomach gets stretched, glucagon is released (read about Dr. Bernstein's "Chinese restaurant effect" theory), and now I have insulin that is outmatched and useless.

Let's look over today, our family's Easter feast day. I started by eating some deviled eggs and some smoked salmon and some olives for appetizer. Quality food. I was already full. Of course, I bolused. Next up, ham, salad and grilled veggies. All good stuff. So, all together, not to much in the carb realm... but, I was beyond full.

I saw my sensor BG level hitting 140 mg/dl post meal.

I got out my secret weapon. Walking. I took two brisk laps around the block and during that time I saw my BG hit 160 mg/dl and then change direction and return to 130 mg/dl. Then it started creeping up again...

When I got home I tested and found that my sensor had it wrong. I was 200 mg/dl. I took our dog for a brisk 20 min. walk and saw my post walk BG at 111 mg/dl. Okay, so hopefully I'm stable enough to go to bed and not see any more rises.

My insulin seems to work slowly, unless I exercise. When I do, I find that it accelerates everything. For me a correction has become a bolus and a walk. Done.

Hopefully, someday...  I will figure out how to approach a celebration without consuming more food than usual. Or, I will just plan to walk a lot.

CGMS accuracy hiccups

It's a bumpy ride... or not.

I find that my CGMS is rarely accurate during the first 24-48 hours. At first I thought it was because it was getting calibrated, and it took a while. But, then, sometimes it would calibrate perfectly by the 2nd reading and then be spot-on till it ran out of battery 6-7 days later. I just want to give props to my last one that was accurate the whole time, 24x7. It took 7 days for the battery to run out, or I would have kept it going longer. Hope there's a few more like that in my future...

I think that when I hit a blood vessel there is some bleeding around the sensor. Since it's meant to read BG from interstitial fluid, and not blood, it's not accurate. I believe when the blood gets reabsorbed and the bleeding stops, it gets more accurate. I have had results that go along with this idea. I always leave them in, even if I notice bleeding or accuracy problems early on. They seem to eventually get sorted out, but it's not immediate.

Today, I turned it off and am going to give it some time before I actually depend on it for real useful data. So far, I've been pretty flat at 90 mg/dl this AM and my sensor has had me at 69 mg/dl with a single down arrow and low predicted, and then a double arrow up at 129 mg/dl predicting an ascent out of range. During the night it showed me going from 81-130 every hour like an ECG. All false...

Anybody else out there have these quirky problems with their CGMS?

I have heard that Medtronic has improved their sensor technology, a lot. That will make a huge difference, when the FDA approves them and we get them. Dexcom seems to be ahead on the development, but I'm pretty hooked on the pump integration, so am willing to wait/suffer a bit.

Great videos that show what's up with total cholesterol...

diabetic jewelry

I enjoyed looking at these diabetic tattoos. I read that the reasons many of the owners got them was because they didn't want to wear a medical alert bracelet. I think if that's your reason, you have to be honest and say that you really want a tattoo. If I don't want to wear a bracelet or necklace, I just... don't.

Part of me wonders... maybe I'm wrong in my decision on this, but, from my experience it isn't necessary. I guess I've always felt that it's my job to protect myself by being really careful with insulin.

What do you think about them? (not tattoos, medical alert jewelry)
What do I do? I have a card in my wallet that says that I'm a diabetic. Is that enough? So far no one has ever seen it.

If I were to ever get a tattoo, it would be a conversation starter. I love to have conversations about diabetes, so I guess it's pretty likely that I might get one like that. But, I'm not really a tattoo person.

Ahh... blood.

I received my labwork on my phone. I had the patience to wait until they pinged me and said it was ready. It was hard to wait... it took 5 days to reach my phone, but only 24 hours to get to my docs.

It was exciting because I was seeing a lot more blue ink, indicating more/new numbers that were out of normal range. Even my blood glucose of 105 mg/dl was marked as "high". Did Dr. Bernstein get to them?

I don't have to do an at home A1C this month because I did an "official" one in the last few days of March. This time it was 6.3. I had guessed that it would be that number, because I had looked at my recent sensor/meter readings. I don't really regard the A1C as a suspenseful data point anymore, I can see the trend and pretty much guess it. I would venture to say, our sensor/meter data is more useful than an A1C these days.

Other things I was looking forward to seeing:
1) Thyroid Function- I asked my doctor to order a TSH test to see where I was with that. I had been fine in Sept., but during the last 6 months I felt that I was showing signs of slower metabolism. I wasn't eating very much, still maintaining weight, etc.  As it turns out, it was high, which means it's likely that I have some sort of low thyroid issue. Possibly low-iodine intake. I understand that there are various reasons why Type 1 diabetics also have hypothyroid issues. I'll see what route my doc wants to take to correct it.
2) For the same reasons pondered above- I wanted to have my testosterone checked. I figured the metabolism question might be related to one of the two hormones. It was not the problem, it was a tad higher than normal, which could be the reason why I have felt pretty decent despite low thyroid function. I've never come across as a high-test kind of guy, but, I like knowing it's on the high-side for health/aging reasons. Insulin sensitivity goes up with testosterone levels.

Other interesting data: 

• There was low creatinine in my urine, which would only be interesting if I had an abnormally high number in my blood. Since I don't, it likely just means my kidneys are working well. 
• The bloodwork also showed a high-ish ratio of albumin/globulin. This ratio was 2.1(the upper edge) last time and now it's 2.3. Seems like a marginal change. The things I read didn't make it seem like a sole indicator of anything in particular, but if other things were out of whack, it might help shed some light. It is usually related to liver and kidney issues.
• My cholesterol is higher than last time, but I have read that hypothyroidism can have an impact on cholesterol, so that may be tied in together. I had expected my improvements in my glucose control to impact my cholesterol positively, but, I guess there's always multiple factors at play. My triglycerides: HDL ratio is still solid, so I'm not worried about any of the lipids right now.

So, that's all the excitement for now. It will be interesting to see if my doctor orders any more lab work to clarify my results at all. I will see him in mid-April, so that will be when I might get some more info on it.