Taking My Insulin Pump into My Own Hands

It is always a dilemma when you, as the patient, think you know better than your health care professionals, although you recognize that they are the experts.  Over the years I have found that with diabetes, no expert knows your body better than you do.  But because the results of a mistake can be so catastrophic, I have not always acted on my thoughts, or gut feelings, regarding my diabetes care, or at least not at first.

This time I resisted for 2 months even though I’d been frustrated by my numbers.  I was doing well with the pump but was still waking up much higher than I thought I should. I don’t mind waking up 120, if that is the safety net I need to not be in danger of nocturnal hypoglycemia, but 165 is just too much.

I was also frustrated with my A1c, which stayed at 6.4%, although I felt my daytime control had improved.  So last week I took a big step. I changed my basal rate on my insulin pump. I know this doesn’t sound like a big deal, I mean I have been dosing my insulin for close to 10 years now. When I was injecting (MDI) I experimented with different long acting insulin doses trying to get it right, but for some reason I was scared to change the programmed basal rates on my pump, set by the team at the diabetes clinic.

Last time I was at the clinic I explained that I was still waking up high. So the doctor decided to up my basal rate from 0.65 units per hour (U/H) to 0.75 U/H between 2:00am-4:30am but then lowered it to 0.35 U/H from 4:30am-6:00am before it goes back up to 0.45 U/M (redistributing the same amount of insulin). I tried to ask why she lowered it so low but I didn’t get a real answer ,  she did mumble something about having too much insulin and morning lows, but it didn’t make very much sense to me.

The change did make a little bit of a difference but I was still waking up high (140-170). I also didn’t like having 2 different morning basal rates because I felt it made calculating my sugars during runs harder since I don’t always run at the exact same hour.

For weeks I wanted to change my basal rate but was a little scared to do it on my own. Not because I didn’t know how to do it – the Medtronic pump is user friendly enough – but because I was scared of lows, thinking that maybe I ought to wait until I went back to the clinic and talked to the doctor about it.

I don’t know what made me finally do it, with only a one week to go before my check up at the clinic. But after a few days of waking up with relatively high blood sugar levels, even after I had made sure to go to sleep with blood sugar levels in the 90’s and with no active insulin on board, I decided to take things into my own hands.

I know to most this may not seem like a big deal but to me it was a big step and I am happy to say a successful one. My morning sugars are much better (90-140).

The best part of it was that when I went to the diabetes clinic on Wednesday and they downloaded the data from my pump and started looking for the “bad” parts of the charts, there were very few. The doctor looked it over and without taking her eyes off her computer screen said: “There isn’t much to say about your diabetes.  It’s all good, but your cholesterol…”

I told her about the basal rate change I’d made but she didn’t seem to care.

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Amy
Amy
12 years ago

Hi Michael, I recently took the same actions you did after experiencing a similar situation with my Dr. I agree that if our Drs. don’t care enough or aren’t knowledgable enough to help us we must take matters into our own hands. The results of my basal adjustments have been great and I feel much better. I was having morning and overall highs and my numbers are back where they should be. Perhaps this is why my A1C has been over 7 the past two checkups. I’m hoping the corrections I made will result in a better A1C next visit.… Read more »

Ann
Ann
12 years ago

I am surprised that after 10 yrs that you still don’t take charge of your pump and its’ features. You should know what basal, bol etc means and how it is used. You have to input your rates when you eat a meal so you should understand the meter or else get some one who does know and could help you.

Scott K. Johnson
12 years ago

Good for you Michael, I think it is important to be comfortable making small changes like this when you feel they are warranted. 

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