“Talk About Your Medicines” Month: Insulin Safety

Talk About Your Medications Month

Earlier this month I was contacted by the Community Awareness Coordinator at the American Recall Center and asked to participate in their campaign to raise awareness of medication safety through creating a blog for “Talk About Your Medicines” Month (October).

First and foremost I want to apologize for not posting my blog until the last day of October.  I am the ultimate procrastinator! (This month has been crazy anyway – a lot going on with school, starting the application process for internships, volunteering, getting over bronchitis, getting all kinds of blood work and vaccinations, work, interviewing for a new position at work, etc….) But I am finally here, today, to talk a bit about the primary medication (insulin) I use and general advice I have for others who may just be beginning insulin therapy.

I take NovoLog, a fast-acting insulin. I DO NOT use a basal insulin (such as Levemir or Lantus) because I use an insulin pump. However, these guidelines/recommendations for use apply to all insulins.

In the course of my life with Type 1 diabetes I have used so many insulins: Regular, Lente, UltreLente, Humalog, Lantus, and Novolog.  Incidentally, there are actually still a few I’ve never used: NPH, Apidra, and Levemir.  As you can see, there are many different insulins! Each one acts differently than any of the others, though some are fairly similar to one another.  Each one has a different onset time (the amount of time between injection and when the insulin actively begins lowering your blood glucose), a different peak time (the timeframe in which the insulin has the greatest effect on your blood glucose), and a different duration (the amount of time it works in the body to actively lower your blood glucose). Some insulins are made to work quickly and are primarily used in the case of correcting high glucose levels or when eating. This is called a bolus. Others are made to work in a less dramatic and longer-lasting way to deal with the glucose occasionally released by your liver – these are given at set times of the day. This is called basal insulin. (Note, if you use an insulin pump your basal doses and boluses will all be handled with a fast-acting insulin typically associated with boluses.)

If you are a first-time insulin user, it’s important to remember that you need to follow your doctor’s orders. Give your insulin when he/she directs you, in the amounts or ratios he/she directs you to use.  DO NOT adjust your rate on your own until and unless you truly understand what could happen. Remember: insulin is a potent and potentially dangerous medication, if used incorrectly. An overdose can easily cause serious or even life-threatening low blood sugar reactions, requiring emergency medical care.  For what it’s worth: I change my dosage ratios on my own…….but I’ve had Type 1 diabetes for 22 years. I’ve used insulin since the day I was diagnosed. That’s a lot of experience.  If I were new to using insulin, I would NOT be comfortable making those changes without first calling my doctor. As it is, I still occasionally email my doctor between appointments to ask for advice or to let him know of any issues I am having and ask his opinion on changes to my dosages.

If you are new to using insulin you need to be sure to ask your doctor:

  1. What are the symptoms of low blood sugar (hypoglycemia)?
  2. What is the best way I can treat low blood sugar?
  3. How should I handle my insulin doses if I am sick and unable to eat?
  4. What should I do if my blood sugar levels are high and aren’t coming down with the dosage you’ve recommended to me?
  5. What, if any, other side effects should I be aware of? (Note: some people DO have allergies to certain rDNA insulins – this often, but not always, presents as skin rashes/painful welts/hives!)
  6. What should I do if I feel I may be allergic to the insulin you’ve prescribed?
  7. What, if anything, should I do to adjust insulin/food intake for activities involving exercise?
  8. How should I be matching insulin intake to food intake?

Unfortunately, I have seen too many horror stories of people new to insulin therapy being handed a vial of insulin and some syringes, told to ‘take X units of this insulin (a bolus insulin) before every meal and take Y units of this insulin (a basal insulin) before bed and before breakfast’…and that is all the instruction they are given. These people have little to no understanding of how insulin works or how it will affect them, and aren’t given guidelines on how insulin and food work in proportion to one another. These people often experience frustrating highs and lows, without understanding why.  Be an advocate for yourself and ASK QUESTIONS.

Also, remember to store your insulin appropriately. This means that unopened insulin needs to be refrigerated. Open vials and pens are typically good for 28 days at room temperature. If insulin gets too warm, it may lose potency and not work as intended. If you are noticing unexplainable high glucose levels, this is something to consider – could your insulin have gotten too warm?

Finally, if you are using older insulins which can be mixed (your doctor will let you know), you need to be sure to gently mix your cloudy insulin before use, and draw each insulin into your syringe in the order your doctor directs you. All newer insulins are ‘clear’ and cannot be mixed with one another. If you are not explicitly directed to mix insulins, DON’T DO IT - you could contaminate whole vials of insulin….and insulin is expensive!

Ultimately, be safe!

Being Thrifty

I mentioned something on social media a few days ago about a ‘lifetime supply’ of lancets, and how I get my test strips free every month. I’ve been getting a lot of ‘How do you do that?!’ questions, so I thought I would share.

Nothing I’m doing to get supplies is incredibly mind-blowing nor is it difficult and all of it is done honestly.

LANCETS: For my lancets – I primarily use the Accu-Chek Multiclix lancing devices, but also like the Delica lancing device from OneTouch.  The vast majority of the lancets I have are for the Multiclix, however.  What I mean when I say I have a ‘lifetime supply’ is not that I have enough to prick my finger with a brand-spanking new lancet every time……..I am notoriously BAD at changing my lancet, often not changing it until I literally just can’t make myself bleed. I recently found two large lots of Multiclix lancets on Ebay and purchased them at well below retail pricing. I have enough lancets now that I can change my lancet every two weeks and still have them last about 50 years.  (Yes, go ahead and tell me that I need to change my lancet every time or I will get infections….I’ll point out that in over 22 years I’ve never had a skin infection. Tell me I’ll get calluses….I’ll point out that I test so often my fingers were callused even as a child when I DID change the lancet every single time.)

The Multiclix lancets retail for $12.99 for a box of 102 at Target.  Even if I used insurance coverage to get 204 a month, I’d pay $15 out of pocket….averaging $7.50 a box.  The ones I got on Ebay ran me $4 a box and I only paid $2.54 to ship all of them.

To me….that is being thrifty.  For others, who wish to change their lancets every single time, this may just be a case of being silly.

TEST STRIPS: As far as my test strips, yes, it’s true….I get 250 test strips absolutely free every month.

See, my insurance formulary treats all glucose strips the same – every single brand (even store brand generics) fall into the highest co-pay tier on my insurance. They ALL cost $55/month in copay. When I learned about this I was dismayed, because my last insurance policy only charged $25/month. As an adult back in school, who gave up a full time career teaching, spending an extra $30/month was NOT something I wanted to do (especially because the cost of my insulin was also going up $30/month…and I haven’t figured a way out of that one yet!).  Incidentally, around the same time I chose to change from Walgreens pharmacy (I had been using Walgreens religiously since my diagnosis in 1992) to Target pharmacy.  I had had enough of Walgreens – they never seemed to have my Verio test strips or my Novolog in stock, and several times I had to wait a WEEK for them to get them in. They were never helpful about obtaining them from another pharmacy location for me – it was always up to ME to do the footwork, etc.  (Target, for what it’s worth, has been AMAZING.  No issues.  EVER.  And they have superb customer service.) Well, when I was in my initial consult with the pharmacist at my local Target, working out how to transfer my RXs from Walgreens to Target….she let me know about their store brand ‘premium’ meter and how with a RX from my doctor for those strips I could get a full month’s supply for just $4, under their ‘$4 generic program’.  I took some time to investigate and found that their ‘premium’ meter was a rebranded Wavesense Jazz. I went about getting a free meter and strips from Agamatrix (the manufacturer) to try it out and compare it to my Verio IQ prior to making a full jump over. After all, lower copays aren’t much good if accuracy sucks.  But the accuracy was great and I chose to get my RX changed from Verio strips to the Up & Up premium blood glucose strips.  Somehow or other I don’t even have a $4 copay….the way my insurance works in tandem with a generics assistance program somehow balances out to nothing………as in, I pay NOTHING for my strips every month.  (The best part is that Target still tells my insurance I’m being charged $55/month, but then Target ‘pays’ it on my behalf.  My insurance applies $55/month to my out of pocket maximum, even though I’m not the one paying it out of my pocket.)

So if you are willing to switch to a meter with a few less bells and whistles, it’s absolutely within everyone’s reach to obtain free or very close to free test strips every month.

DME: The last way that I’m ‘thrifty’ with my diabetes supplies is my purchase of DME supplies. If you’ve read anything else I’ve written about DME you know I HATE Edgepark because they markup their prices astronomically. I now get my supplies for my t:slim directly through Tandem. They were in-network for my insurance I had for 6 months last year, but they aren’t for the insurance I use this year. HOWEVER, because the price they charge is FAR less than what Edgepark (who IS in-network) charges and actually falls so far BELOW the maximum allowable charge by my policy, my insurance has agreed to reimburse as if they are in-network. Meaning my supplies each month work out to be about $35 out of pocket, instead of the $80 per month I was paying out of pocket for supplies from Edgepark…..for the exact same supplies. Now that I’m on a Dexcom I have to use a third-party for them (my insurance doesn’t contract with Dexcom either, and apparently Dexcom doesn’t want to touch the accounts of out-of-network patients unless they’ve exhausted all other options)………but I asked my local Dexcom rep to do some price checking for me and told him I’d under no circumstances use Edgepark. He got me hooked up with Byram. While they do markup, it’s only a few dollars per box of sensors and so basically my out of pocket payments for sensors through Byram cost the same as they would if my insurance worked directly with Dexcom.

The lesson here is that you need to price check. You need to talk to your insurance company to find out your options, call those companies and find out what their contracted rates are with YOUR policy, find out what YOU would pay out of pocket – and get it in writing if you can. Do not just accept the DME provider your insurance company at first recommends. They often are NOT the lowest cost option. (Why in the world insurance companies want to contract with higher priced options, I will never understand). If you find an option that is far cheaper but is out-of-network, talk to someone at your insurance company – they may be willing to write up a specialty contract just for you so you can use that option and save yourself and your insurance company a lot of money.

Diabetes is expensive. Look for the loopholes, use your resources…and you may be able to make it a bit cheaper for yourself, without sacrificing quality.

Diagnosis Date

I have never known my exact date of diagnosis.  Things were a blur at that time, because diagnosis came in the midst of a family vacation, so all my parents could ever tell me was that it was late July. I assumed it was near or on a weekend, because we had been on vacation for a day or so when I was diagnosed.  I estimated it was July 26, 1992 and that is the date that I’ve declared as my ‘diaversary’ every year since I started even really caring about a diaversary a few years ago.

Today my GP let me know that their clinic was accumulating records for their patients and were working with all other major networks in the state to compile one electronic record that would encompass EVERYTHING, whether I’d been seen for/diagnosed with a condition there or somewhere else. I said I’d be very interested in obtaining access to those records and I was given access right away and ……. look what I found:

Capture

Yep, that’s the date I was diagnosed with IDDM (Insulin Dependent Diabetes Mellitus)…….July 23, 1992.  My estimate was only 3 days off.

And now I FINALLY know!

 

Let’s Talk about Gluten

Gluten. (from Latin gluten, “glue“) is a protein composite found in wheat and related grains, including barley and rye. (Wikipedia)

It’s a word you hear a lot lately.  While there are definitely a lot of people with legitimate celiac disease or gluten sensitivities out there, you didn’t hear a lot about gluten until a gluten free diet became the world’s new fab fad diet within the past year or so  Now it seems like EVERYONE is worried about gluten.

My husband has (mostly) avoided gluten for several years now, to ease some pretty major digestive issues that went completely undiagnosed by his (rather stupid, in my opinion) gastroenterologist.

So when I started experiencing my own digestive issues with a high frequency, my first thought was ‘gluten’.  But then I felt silly…..after all, I reasoned, how likely was it that we BOTH have issues with gluten?  Not too likely, if you believe the statistics.

And yet….I have Type 1 diabetes.  Which means my chances of having celiac disease are at least TEN TIMES higher than someone of the ‘average’ population. (Auto-immune conditions tend to come in clusters, lucky us…)  In fact, I was tested for celiac disease 22.5 years ago, about a half a year before my Type 1 diagnosis (by the way, yesterday was 22 years with Type 1 for me – happy diaversary to me!) and my results were ‘inconclusive’. My parents were told to put me on a GF diet – and they did, for 6 months.  Back in the early 90s this was no small feat for a child who didn’t like most veggies and fruits, because there weren’t a lot of GF alternatives out there for my favorite processed foods. My mom said my diet went down to about 6 staple foods that I would eat all the time – and that was it (well, and my Flintstones multivitamins).  But my problems with nausea and weight loss and fatigue didn’t dissipate.  When I was diagnosed with Type 1 the doctors said ‘oops’ and told my parents that my symptoms had been due to the burgeoning Type 1….that I didn’t have celiac disease at all.

And so I went back to eating a gluten-filled diet.

Through the years I’d noticed that I seemed to have ‘digestive upsets’ more often than my family or friends …. but I attributed that to a bad immune system, poor control of my diabetes, minor food poisoning (over and over and over – how many times can you get food poisoning?!), etc. Never once did I think that it might be due to something I was consistently eating.

As I said, I recently (in the past few months) have experienced some major digestive issues with regularity.  I’ve had to call in to work on a few occasions and I missed school once back in early May. The symptoms would build up over several days, then get really bad for a day, then dissipate over a few days……only for the cycle to start again.

Two weeks ago I’d decided I’d finally had enough and cut out gluten completely.  This wasn’t the hugest jump for me to make – I was able to ‘copy’ many things from my husband’s diet and find alternatives for things I felt I still absolutely wanted to eat. The initial thought was that I’d do this for 3-4 weeks, see how I feel, and then reintroduce gluten to see if any improvement was coincidental or not. At that point if I felt it wasn’t coincidence I’d request re-testing for celiac disease.

My digestive issues haven’t resolved 100%…….but I’m about 70% better.  And as if that’s not reason enough to keep going with this……..

I have strong reason to believe that gluten has been causing insulin resistance in me.  Prior to cutting out gluten my Dexcom data shows that I was averaging a BG of about 137 and stayed between 70 and 150 about 60% of the time. I often had excursions over 180 after meals, no matter when I bolused.

Since cutting out gluten (and note: I am eating the SAME number of carbs per day!) I’ve decreased my meal-time insulin by about 9 units per day and I need to continue to decrease my I:C ratios because I continue to have lows after my meal boluses.  I am averaging a BG of 106 now, and I’m staying between 70 and 150 for 86% of the time.  Most of the time that I’m outside that range I’m BELOW it, not ABOVE it as I used to be. I’ve changed nothing else in my life the last two weeks.  I can only attribute this sudden increase in insulin sensitivity to the elimination of gluten from my diet.

I think that, regardless of digestive issues, I’m going to keep eating gluten free. Anything that helps me attain better control of my diabetes while simultaneously reducing insulin intake is a keeper, in my book.

An Update On My Eyeballs

Today I had my 6-month checkup with my retina specialist.  I’ve been fearful the past several months that my retinopathy was returning and/or worsening.

See, I’ve been having a lot of hemorrhages.  And all in my central vision.  It’s annoying and scary, you know?

I hadn’t gone in sooner than my regularly scheduled appointment because I’ve already been told a million times that more laser treatments are NOT an option for me.

Today I got a much better explanation of exactly what is happening in my eyes.  Some of it is GREAT news, some of it isn’t so great.

Let’s start with the GREAT news: The doctor sees absolutely no signs of active retinopathy, at any stage, in either of my eyes. Essentially, I am officially retinopathy free!

The not-so-great news: I am experiencing hemorrhaging of a different sort. I don’t have diseased or proliferating blood vessels……..but I do have an insane amount of scar tissue (in my central vision) from the many, many, MANY laser treatments that were used between 2007 and 2009 to save me from blindness. This scar tissue is pulling at healthy blood vessels, and occasionally those healthy vessels rupture.  They heal quickly because they are not diseased, but when it happens it is majorly annoying and inconvenient.

My options are to either live with it or opt for another vitrectomy, to clear out some of the scar tissue.  I am opting, for now, to live with it.  When I had a vitrectomy on my other eye in 2009……it was horrible.  I went through weeks of having to wear an eyepatch, weeks of having to use numbing and antibiotic eye drops EVERY FOUR HOURS, and months of absolutely no vision in that eye whatsoever as the trauma to the eye was significant and took a long time to heal and ‘calm down’.  I’m not willing to go through that again knowing this surgery wouldn’t even be able to realistically take out all of the scar tissue, and thus the issue may persist anyway.

So…..yeah.  My eyeballs are healthy! But the treatment that saved my eyesight is now the cause of my occasional issues.

Dexcom G4 Platinum CGM – First Impressions

I began using my new Dexcom G4 system on Monday evening.  It’s been wonderful to have – and after only just over 36 hours with it, I can’t imagine not having it.

The first night it woke me up three times to alert me to lows – the first time was a false alarm, but the next two times I was in fact low.  I have my alerts set at 70, so I can get my lows fixed as soon as they happen (minus the few minutes lag that a Dexcom can have in comparison to blood glucose).

Look at that control! Total fluke!
Look at that control! Total fluke!

Last night it woke me up for a low and then, when I overcorrected for that low, it woke me several times for being high.

I have found the information it gives me to be highly valuable and overall I’m finding it to be fairly in line with my meter readings.

My only complaint so far is that sometimes, if I am skating around an alert-level number, this can set the alert off multiple times in a short period. Last night I hit 200, the alert went off – I acknowledged and dealt with it.  A few minutes later it read 198….then a few minutes later it read up at 202 again. And because I crossed that 200 mg/dl level again, the alert went off again.  I just wanted to sleep!!!!

I’ve been using the ‘Dexcom in a glass at night’ trick that I’ve seen around the DOC, in order to hear my alerts at night (I have my Dexcom set to ‘vibrate’) and it’s worked really well – I wake up right away.  Hopefully my husband doesn’t want to kill me or my Dexcom yet.

I tend to name my devices, because I often ‘talk’ to them (that sounds crazy…..it actually started as a way to refer to my insulin pump with my kindergarteners when I was teaching – hence, my Animas Ping was named ‘Frank’), so I’ve been thinking about what to call my Dexcom. I didn’t want to use ‘Dexie’ or ‘Dexter’ because I feel like every third person in the DOC uses those names. I just call my t:slim ‘Slim 2.0′ (because this one is a replacement pump for my original t:slim) and so in line with finding a name related to the product name I’ve decided to call my Dexcom ‘Dextah’.  It has a silent ‘t’ by the way (it’s said ‘Dex-sa’).  So for anyone who knows me IRL – if you hear me talking to ‘Dextah’, know that it is NOT an imaginary friend!