Wednesday, May 22, 2013

I Have No Answer

How many total insulin units do you take in a day?

I hate. this. question.

Because honestly, I don't know the answer.  And to say "it varies" does not go into a nice little check box.

"Just guess."

Is it my birthday?  My kid's birthday?  Have I been sick?  Is it my period?  Have I been exercising?  Have I been depressed?  Did I run out of eggs?  Did somebody take me to the cheesecake factory?  Have I been going low carb?

"Just, you know, a typical day."

I have no answer.  A typical day doesn't exist anymore.

I can tell you how many units of Levemir I take.  Novolog, I can't really tell you.  Did I have the dawn phenom? (Probably, but not always)  Did I go high at night (Probably, but not always).  Did I overcorrect a low and have to bring it down with insulin?  Did I switch cholesterol medications and suddenly become insulin resistant for no reason?

"So....like 12? Maybe 4 per meal?"

I HATE THIS SO MUCH.

"Sure.  Put that."

I get why some people have to ask it.  Clinical trials like to say "we took this person from x units a day to y units per day."  Only numbers are useful.  But honestly I can take anywhere from 0 - 8 units per meal depending on where I started (oh look at that high!) and what I'm eating (hello, spinach salad).

 Plus snacks, if I'm feeling like I need one. And frankly, I rarely snack, and I miss it.  I'm thinking the pump will help with that, but then it will increase the number of units I need per day and that is bad because....you know.  It just is.

I always wonder how the trials do it, unless the patient is eating the same thing over and over and seeing if it changes...which of course it will just with regular diabetes, so, there's that.  I did try to keep my meals consistent when I was on my trial so they would know if there was a difference. But are all patients doing that?  I don't know.

My doctor always asks this.  I'm so tired of it.  I always say "it depends on what I'm eating" and he says "your chart says 3 per meal.  Is that about right?" and I say "that's what the idiot hospitalist told me to do at the hospital when I was diagnosed and didn't even say anything about varying it per carbs.  Thank goodness the CDE brought it up." "OK, good, so you're carb counting.  Well, we'll just leave it."  And then we have the same conversation every six months.  "Are you still at 3 per meal?'

I bring this up because I thought I would sign up for some more clinical trials if they'll have me.  I am all for experimental drugs.  But then I am paralyzed every time by this question.  EVERY TIME. Can I please just say VARIES?  Because it does.  And I bet it does with every Type 1, all the time.  No trial has heard of temporary basal rates for exercise or illness?

Nope.  Just put in a number.  Guesstimate.  Give an average.

The BEST is when you are at a non-diabetic doctor's office (like the ob or the dentist) and they ask you to list your medications and the dosage.  "So, the Novolog, how much?" "Changes daily."  Blink. Stare. Silence. And then I give them an accurate answer:  "One unit per 10g of carbohydrates if it's breakfast or dinner, and and 1:15 if it's lunch, plus one unit for every 50 points of correction needed, and if I exercised really hard, I change all of that by 5 points."  "So....how much is that?"  "I don't know."  And then as they stare at me blankly, I say "You can put 12 if that makes you feel better, although sometimes it's double or half that."  And they nod and put 12 and scurry away, grateful to deal with people who can say "10 mg."

I have an endo appointment next month.  I am going to ask for a pump.  And a billion people are going to ask me how much I take every day so they can help me figure out how to work the pump. And I might just cry.

How do you answer this?

3 comments:

  1. I usually answer with "about 30". Sometimes I'm in the low 20s, sometimes in the upper 40s, depending on how my day is. Of course, sometimes I think I'm putting it in my body but my pump infusion set is sending it elsewhere, or bolusing me with air bubbles. But the pump screen tells me the daily totals, and I average from there.

    In your case, since you don't pump, you don't have that luxury. Here's my suggestion: When you start a brand new insulin pen or vial, write the date on it. When it's empty, see how many days have passed, and divide the number of units in the pen/vial by the days. That should bring you close.

    Of course, it always matters whose asking the question. If you're doing this for purposes of insurance coverage, estimate high (so you are entitled to more). If it's for figuring out pump rates, estimate low (cause low BG's really stink).

    Good luck!

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  2. I say pick the ratio that you use there most and put that. And definitely, if you are telling the insurance company, especially when you prep for your pump(!), give the highest amount to get it covered by the insurance. It is very helpful, because the pump insulin vials expire after a month.

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  3. Totally agree with ya! Changes a lot from day to day.

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