Symlin

I’ve been taking Symlin for a few months now.  I began taking it in April as part of a comprehensive weight-loss/diabetes management program at Joslin called Why WAIT?   Symlin is a synthetic verion of amylin which is a hormone secreted by a normally functioning pancreas along with insulin and it functions in three ways: First, it slows digestion, which increases the time that food spends in the stomach.  Second, it decreases the release of glucagon at mealtime which then decreases the liver’s release of stored glucose.  Lastly, it effects satiety, the sense of fullness which means that you feel full sooner and eat less.  A constant dose of Symlin is injected at meal time in addition to the meal time insulin.

Here are my thoughts and experiences regarding Symlin in bullet form (the good, the bad, then the ugly):

  • Good: With the help of Symlin, I cut my daily bolus down to a quarter of what it was previously.  This was partly due to my eating less because I feel full more quickly and partly due to my need for insulin to combat the liver glucose went down.  My basal rates were also was cut almost in half.  Less insulin computes to huge monetary savings between the cost of insulin and pump supplies.
  • Good:  I lost almost 30 pounds while taking the Symlin.  Some of this weight was a result of my increased physical activity and better diet, but some was definitely a direct result of the Symlin.  For example, I had a couple weeks in the middle of the Why WAIT? program where I stopped following the meal plan and stopped exercising but I still lost an average of 2 pounds per week.
  • Bad:  The only method of delivery of Symlin is via injection.  I’ve been pumping for almost 10 years by now and one of the biggest upsides to the pump is the decreased number of injections.  Shots suck.
  • Bad:  Symlin is outrageously expensive.  Luckily my insurance was willing to foot the majority of the bill but the cost could easily be a hindrance.  I calculated the cost of Symlin for a year without insurance (using 2-3 pens/month) and I would need a full time job just to pay for it.
  • Ugly:  Symlin delays the release of food from the stomach.  Thus it also delays the BG peaks that we all know and love.  So, blousing appropriately get really difficult.  If I take my  insulin with the meal/Symlin I find myself crashing severely low immediately post-meal.  These lows are hard to treat because, 1) I’m full and don’t want to eat, and 2) The carbs I consume for the low are also somewhat held up in my stomach due to the presence of the Symlin and take longer to take effect.
  • Ugly:  For this reason, I skip the Symlin anytime my BG is below 100 prior to any meal.  This doesn’t sound like such a terrible thing, but when I without Symlin my insulin to carb ratio increase by 10-20% so I end up having to bolus more when my BG is low.  This is so counter-intuitive that I often don’t increase my bolus for fear of going lower and have to deal with the frquent wicked high that results.
  • Ugly: So, like I said, meal time insulin cannot be taken with or before the meal per usual.  Instead I’ve had to figure out the appropriate delay in order to keep my postprandial numbers in check.  Bolusing approximately one hour after eating seems to work really well.  The problem with this is that insulin pumps are not designed to delay a bolus.  I have to find ways to remind myself to take this post-meal bolus.  As one might expect, this often results in my forgetting until I see Dex start to creep upward and the resulting highs can be almost as devastating as the crazy lows.

So, for me, the result is an obnoxious medication that is difficult, at best, to deal, with but produces results above and beyond what I had hoped.  I plan to continue using it for the time being but I’m thinking of reducing my use down to one meal a day.  Ultimately, the beauty of Symlin is that I don’t need it to survive so I can make the choice to take it or leave it.  For now I’m going to continue to take it.

I am not a doctor and am not trained in any medical field.  Please consult your doctor before making any changes to your own diabetes management routine.  Your diabetes may vary.

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Dex Disasters

So, I clearly dropped the ball as far as reporting on weight loss during the Why WAIT? program.  Between heading to Joslin weekly, searching for the perfect job (I’m still looking), working a far-from-perfect one, and volunteering, I found myself too busy generally overwhelmed with life to write anything.  But, the program is now over and I can say that it was a huge success!  I lost 23lb and 3.5 inches around my waist in 3 months!  I would like to lose another 15 and be back to my end of high school weight, but for now I am happy.

As for today’s post, I will begin with a story.

This morning, with sleep still in my eyes, I rolled out of bed, my pump swinging at my side from the tubing clutched in my hand, as to not allow it to hang freely from the infusion site.  I felt around under my pillow to find Dex and grasped him in my other hand, briefly, before tucking him under the waist band of my underwear and fumbling my way down the hall to the bathroom.

I reached up to turn on the bathroom light with my hand that is holding my pump tubing, feel the pull on my stomach and wish for a moment that getting up to take a pee didn’t have to be this difficult and I proceeded to secure my pump to my waistband too.

So, with pump and Dex secured, and the light on, I shut the door and proceeded to pull down said underwear, at which point my fatal error (and that of the idiot who designed a receiver without a belt clip) became quite obvious.  When I heard the sound of a plastic object plopping into the toilet bowl, I prayed a quick prayer to whatever entity or karma my be listening that by some miracle the clip on my waterproof pump had failed me and Dex was magically still in its place at my waist.  But the gods were not on my side and I quickly reached into the toilet, pulled Dex out, wrapped him in a towel, cursed like a sailor, and ran for the bag of rice in the kitchen.  Artist's rendition of the Dexcom in the toilet

At first it seemed like I had made it in time, the display continued to show readings for the first minute or two, then it suddenly turned off, like it does when it gets a little static shock, attempted to “initialize”, failed, and has been sitting lazily in the bag of rice ever since.

I’ve been doing some research reading posts from others with similar problems on TuDiabetes and it looks like a new receiver will cost me at least $200, probably more like $3-400!  If this is true, I might just have to live without Dex for a couple weeks while I save up the cash.  I could potentially put the money on my credit card but I hate to use it for anything short of life-threatening.  So, the question becomes, is life without Dex a life worth living?

Ok, so I’m being a little hyperbolic, but just in the last 12 hours, I have felt completely blind.  In the year and a few months that I’ve carried that receiver with me, I have never been without it for more that about 48 hours (like that time I left it at my mom’s house, 1000 miles away) and every time my blood sugars end up completely out of whack.  Right now, for instance, I am 250.  I have been 250 for the last 4 hours, approximately (according to 3 finger pokes).  With Dex, I would know if there have been peaks and valleys between readings and I would know if my insulin on board was really going to cover that number or if the extra insulin that I’m about to bolus is going to cause my to crash LOW in the next hour.

Since Dex came into my life, I have unlearned to rely on my symptoms and, instead, I rely solely on Dex to tell my when to test my BG.  In some ways this has been good; I no longer assume that I’m high just because I’m thirsty – sometimes thirst is just thirst – or low simply becasue I’m hungry.  I take pride in the flatlines I see on the receiver and hide Dex from M when he resembles the Rockies.  Dex is like a fifth sixth limb and, as much as he gets on my nerves sometimes,  I miss him when he’s gone.

Leafing It

As of yesterday, I am leafing it.  In the past 3 years, I have gained 40 pounds, mostly in the first year.  I attribute the massive weight gain to a combination of rapid A1C reduction, new birth control pills, a discovery of my love for cooking, and a new boyfriend with a ridiculous sweet tooth.  At the beginning of all of these things my A1C was over 9 (the lowest it had been for quite some time), I was single, and at my lowest weight since before puberty.  Currently my A1C is down to 6.1 (!), M and I have been together happily for over 2 years, and I am at my all-time high weight.  A year or so ago, when I really noticed the weight gain, I tried working out but with my new-found lower BG levels but I couldn’t work out for more than 10-15 minutes without going wicked low.  I tried all kinds of things to keep my blood sugar up, but was too overwhelmed and quickly stopped trying.  Truthfully, I have never been one to work out.  Actually, I hate it.  With a passion.

Anyway, back to that new leaf.  I started going to the Joslin Clinic, here is Boston, three months ago.  For the first time in my D-life I had an entire diabetes team, not just an Endo.  They quickly zeroed in on my problem areas and helped me to at least exist in Boston without going incredibly low every time I step outside.  After a session or two with my exercise pathologist, she recommended the Joslin Why WAIT? program.

I was reluctant at first – I’ve never dieted, and I certainly have never seen myself as fat.  (No daddy issues thus good self-esteem.)  But after some consideration and long conversations with M about the cost/benefit ratio, I decided to give it a try.  I couldn’t deny the extra weight any longer and figured this was going to be the best, if not only way, to really deal with it.

So, as of Wednesday, I am on a 1500 kcal diet, substituting breakfast and lunch for a Boost Glucose Control shake (lunch also comes with a salad), cooking the 600 kcal dinner entrees (600kcal is A LOT of food!) that have been provided for me, and spacing 400 kcal worth of snack throughout the day.  I’ve also started taking Symiln before all three meals, and exercising regularly.  I will do my best to keep the blog updated with my progress and any helpful tips that I pick up along the way.

I have high hopes that the program will solicit some positive changes.  After just one day of the new diet and the Symlin, my total daily dose of insulin has dropped from around 75u to 35!  And I wasn’t hungry at all throughout the day.  Although my numbers were trending a bit low for my liking, my Dex graph was nearly perfect for the last 24 hours and I didn’t take a single correction bolus.

So, the new leaf has turned, and I’m hopping for a happy outcome!