Hello, I was poking around on the internet trying to determine the reasoning behind my doctor's (well his "care management" nurse really) decisions regarding he settings on this pump I got about 4 months ago when I found this forum.
As a little background; I had a hypo- episode about a year ago while driving and while pulling over broke a fence post and a bench (something like $300 worth of damage). Subsequently someone called the police who proceeded to cause about $1,100 worth of damage to my vehicle by kicking the drivers door the wrong way, popping the hinges and causing a dent etc followed by slapping the cuffs on, writing four tickets the whole works. After a second officer arrived on scene and called the paramedics who proceeded to have a heated argument with the first officer that I was not "drunk off my ass" or "high as $%^&." As a result of this, in largely an effort to calm everyone else in my family down I went and got a pump. Initially my A1C went from a 6.5 to a 6.1 for the first three months.
In any event my question to people with more experience with a pump than I is this: I did two or three basal tests to cover all hours of the day at least twice approximately two weeks apart and the rates were adjusted accordingly. Approximately 6 weeks ago before going out of town for a month between them they had me lower all of the rates (there were 5) down anywhere from 15% - 30%. At the time there were the infrequent largely expected lows and highs and according to them the average was 131. Now it's 141 and climbing since the Care management nurse returned and there are frequent highs all throughout the day. I've said this and their solution is to further lower the basal rates for at least a third of the day (incidentally the day that is the most stable and in range) in order to "fix the high occuring at night around 2:00am" and in addition to lowering the base rate start doing dual wave bolus and take more for meals and correction.
I am reluctant to do this because taking larger boluses seems like it would cause more issues due to error or overcorrection. In addition to this I am unclear why if the base rates were satisfactory and needed a few minor adjustments before to keep bgs in range how can changing them so drastically for the sake of a "60/40 bolus/basal" split be justified? I already had some problems with "minor kidney damage" which has dissipated from when I was younger and I did what the doctors and my parents wanted (which seemed to be the usual disregard for long term damage in order to avoid the potential short term headaches...) I already got away with it once and I have no interest in seeing if it heals again. Any ideas as to why they are doing this because I am at a loss.
This makes me wonder if the time reading is off by twelve hours and the nurse didm't notice. When our pump failed and was replaced by Animas somehow we had the time out of phase between AM and PM.
I hope you got a lawyer. No one deserves to be beaten by the police even if they are drunk. That is ridiculous.
I got a lawyer just to contest the tickets, but as is increasingly the case in municipalities across the country you don't get access to your police report until you've put in a plea at your hearing. In other words you have to say whether you're innocent or guilty before they tell you what you supposedly did. As such I did pretty much what they wanted and just did whatever to get it over with which cost another $1,300 in fees.
In any event, just today she further lowered 1/3 of the day's basal rates again. At this point those in particular are between 1/4 and 1/2 of what they were when they were established in the first place. I told her I'm getting tired of these 200's all the time and her answer is "well we need to lower your basal rate," I say that after she wanted me to adjust for corrections now correcting from 200 something brings it to 35 or 40 and has done so 3 or 4 times, their solution "we need to lower the basal rate there."
Like I say I'm relatively new to these pumps but I'm failing to see what this obscession with low basal rates and high bolus/corrections is about. Seems to me that that has far more room for error than the other way.
I think this nurse has no idea what she is doing. There is no reason you can't manage the settings yourself.
the question to ask the nurse is, "what exactly are the goals of this treatment"? I think the doctor/nurse wants your a1c and average glucose higher then they are now, so you will have an easier time recognizing when you are low. it's a common thing to do for hypo unawareness. I believe they have an agenda and haven't let you in on it.
text book balanced basal bolus runs close to 50% bolus 50% basal, but it is predicated on eating and activity "averages". so you may see very wide differences. If you'r basal was over 70% of your total, it means you were "probably" eating to keep your sugar above zero and this can get you into trouble. It's better for you to be able to skip meals completely and have very little sugar drop by the next meal than it is to require eating at certain times. It might be helpful to know what your % split was. It took me over 6 months to really get my basal rate figured out and it varies a little for me between warmer and cooler months.
Get "Pumping Insulin" by John Walsh. I am the only one allowed to make changes to my pump, my doctor can make "suggestions". you may need to shop doctors to find one that will be willing to work with you.
It was nowhere near 70% of the total it was approximately 60/40 basal/bolus and the averages were lower with few lows that were explained in some way (such as the gym or some such) and no highs, now there's every bit as many lows and highs constantly. After several changes it's 45/55 split and I don't think she and the MD are planning on stopping until it's 40/60 to which I completely fail to see the point of considering with the same eating and activity habits before it was routinely between 90 & 130 or 140 now it's routinely over 180 with the corrections alone bringing it down into the 60's or lower. When I was doing these fasting tests which I've done countless times before it was on the last bunch dropping maybe 30 points at max over an 8-12 hour period. Personally I don't really see what the issue is with that.
I agree with all of Joe's advice. And it took me months to get a fairly decent basal rate, but I still tweak it constantly.
Work with your doctor to determine your target blood sugar. I think it's easier to pick a specific number like 100 than a range of 90-110. Ask your doctor about having a higher target since you may have hypo unawareness right now.
My hypoglycemia unawareness reverses completely within about 6 months of getting a pump. It's 10 years later and I can still sense when my blood sure gets around 70 or lower.
The best way to set basal rates is to fast so you don't have the variable of carbs and meal boluses. Ask your doctor about using a CGM during the fast so you can get constant glucose results. Then adjust your basal and fast again a few days later. It's not fun, but a couple days of sacrifice is priceless to get your pump settings accurate.
I wouldn't stress about percentages. Focus on finding the bolus you need to hit your specific target at any time of day. I've often disagreed with my doctor or nurse practioner's bolus advice, but they can't understand my day-to-day life and the reason behind some of my high or low blood sugars.
You'll know you're doing it right when you go for weeks without having a low blood sugar (and still have a decent A1c) and when your blood sugar is about the same when you wake up as when you went to bed.
I guess I'm not making myself clear, I've been a type 1 for 16 years. I know about hypo unawareness and frankly the doctor I had before this one wanted me to try a combination of drugs which led to a low which I promptly went back to my previous regime inside of a week. I've used a CGM for a week at a time and they wanted the base rates lowered across the board, I've fasted between 6 and 8 times inside of 2 months (it's functionally the same reason you fast for levemir, lantus whatever) yet when I see things like a climb from 132 to 258 inside of five hours, 122 to 259 the next day etc after they suggest a lowered basal rate and their solution is "we need to lower the basal rate some more" I'm just confused about that logic. Like I say I get that bolus and corrections might be harder to determine but push comes to shove basal rates are relatively simple, yet they actively ignore them. There has to be something I'm missing.
It makes no sense unless the nurse is trying to kill you and get your life insurance!
haha Terry that's hilarious.
Mt - when I read your post regarding wrecking the car and then the switch to the pump and the very strange behaviors of your doctor and nurse I made a connection. right or wrong. if all you are saying is correct then your basal rate was perfect before the pump and just like you are saying, screwing with your basal rate is not needed at all. Fire your doctor and go get another one. you cant throw a rock without hitting a half dozen doctors.
for most people, basal % is not above bolus %, that's "most", that means not all. if your doctor is trying to make you fit a mold for no other purpose... he's an a$$hole. of course, you could always ask what the purpose is.
if you like your pump and hate your doctor then buy the book and program it yourself. you are not bound by law to listen to the nurse. we seem to all agree with you.
So, what's your next move?
The response I've gotten is always some blowoff answer vis a vis "it's a process and takes time." In a large part I was just trying to ascertain if there was something I was missing because I can't fathom what their intent is. Honestly I was considering just doing it myself for some time and goign every 3 months tho this guy for the prescription pad he is and because going to someone who "knows" better than you shuts up the parents, girlfriend etc.
yes, the follow up to "it's a process" is: What exactly is the process you are referring to? and what is the purpose of the process? I don't think you will get any answers and if you do, they pro'lly won't be good ones..
it really sounds to me and in my opinion, that your professionals are reading from the Universal Diabetic Playbook, which is not very good news other than: you are probably not crazy and you aren't missing anything. flat basal is flat basal. if your bs isn't dropping than your basal is right - provided you are using your "average" daily activity levels. since we've been doing this for many years, we both know that real basal requirement is a moving target.
one thing regarding getting the diabetic police off your back: I have learned that if enough people think you have a problem then you might have a problem. you could take a peak at the "diabetic police" stories in the Diabetes Burnout book (William Polonsky) I found helpful, or you could commit to some safety resolution such as being faithful to test your BS every time before driving a car and every 45 minutes while driving, for starters, if thats where the screaming is coming from. also, my hypo awareness is spot on, but I still test when my little boy is in the car seat behind me or if I haven had a data point in a couple hours.
I already do all that yeah, the screaming is coming from the usual meddling folks who think they know what it's like or that they could deal with it better because they've spent years watching you deal with it. As for the physician and his nurse the sad part is that they are who every other doctor in the area reference everyone to as it is the "diabetic center" =(