Our daughter uses a Tandem X2 T-slim pump. Up until now, any changes to our daughter’s basal program has been made by her endocrinologist. The endo has even implied that only she should make changes.
Have any of you made slight tweaks without your endo’s “permission”?
Hi @dsiizuka Dani, I’ve had T1 a long time and so I would not describe what I do as make slight tweaks without permission.
Type 1 is a self managed disease. My Endo is more like an advisor to me. I make all pump decisions such as testing and setting my pump up. It was mildly intimidating the very first time I changed a pump setting but that goes away with repetition.
Making basal changes should be done slowly and deliberately. Please consider buying the book “Pumping Insulin “. It can take 3 days for a basal change to start showing a new pattern so making big changes or more than 1 change at a time can be confusing.
Endos rarely have enough time to be 1:1 with patients so if the thought of changing pump settings upsets you, you can try to work with a CDE instead.
So yes. I am in charge of all my pump settings. My Endo sometimes asks what my settings are and I’ll tell her, but it’s my responsibility.
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Hi Dani @dsiizuka, far be it for me to criticize an endocrinologist, but it appears to me as if your daughter’s diabetes doctor is not doing a complete job - education and patient empowerment are missing.
I’ve lived a long time with diabetes and right from the beginning in the 1950’s, I knew that if I wanted to live that I would need to be the person in-charge. I have always mage pump-changes -basal rates, bolus ratios, sensitivity factors, insulin duration - on my own and later, at quarterly meetings with the endocrinologist report what I have done and discuss ideas that I have for improving my diabetes management. On the day the endocrinologist submitted the prescription for my first pump, the only instruction I received for setting my own basal rates and bolus ratios was to be conservative and begin with a total daily insulin of about 70% of the total I had been using in injections of background insulin and meal bolus insulin.
A word of caution, keep a diary of food, insulin and activity with time of day and look carefully back over at least three days of notes before changing a pump setting. A few days after making significant changes, I recommend a “pump setting validation” test by fasting.
Good Afternoon Dani,
I’ve never had the endo tell me I needed their permission to change a setting. What has been suggested is before changing a setting such as basal, is to do a temporary adjustment, to see if the change works. While I’ve not used a TSlim, I have had a Animas Ping and currently on a Minimed 670, both of which have a temporary adjustment capability. That way, if the change isn’t working, you don’t have to remember the old setting or figure out how to change it back.
I am very much a proponent of self management, though if making a change concerns you, ask the endo to show you how… that includes them in your decision, but also relays that you can and will manage your daughter’s treatment independently.
Hey, Dani.
I’m 18 and have had T1D for a little over six years now. I’m also on the T:Slim X2 as of a couple months ago (used to use Medtronic)
First, I totally understand the hesitation with your daughter making her own changes to her settings. But I have to agree with everyone else so far – ultimately it’s up to her to manage her own T1D. That said, I have an amazing endo and nurse practitioner who are always willing to help. In fact, I called my doc yesterday because my sugars have been running very high for a couple weeks and I wasn’t sure why, so he adjusted a couple things, and we’ll go from there.
But, yes, it’s ok and actually expected for her to tweak her own settings. Just make sure you take it slowly – for my basal rates, that means changing .025 units at a time. And like others have said (and my Endo has told me), wait three days to see how the changed settings affect her sugars, and then if you have to, adjust again.
It’s a little bit daunting the first few times you do it, but it will become habit. Don’t worry! 
Our daughter is 33 years old and she is developmentally delayed. As a result, she isn’t capable of making a whole lot of T1D decisions on her own. For example, she doesn’t know how to count carbs since the math involved is too difficult. I’m the T1D decision maker for the most part. She wouldn’t be able to figure out how to edit her basal program let alone know what she might need to change.
There are times when I do want to alter her basal program slightly but feel hesitant to do it without her endo’s input. I guess part of it is wanting someone else to share the responsibility…?
It’s challenging since she often doesn’t pay attention to her BGs (on her DEXCOM cgm) so I have to be on top of it much of the day. That said, I don’t want either of us to become “obsessed” looking at our devices too often. Bad enough that I frequently have to make some adjustments during the night.
On top of everything else, she’s easily stressed and has several other medical problems which don’t help with keeping her BGs stable.
You may have to help your daughter make the changes, as you say she is developmentally delayed. But it is necessary to change basal rates a lot. One reply suggested trying out a temporary basal rate. But the other thing you can do is store several patterns in the pump. (I think you can store 4 in the tslim.) I used to have different ones for winter, summer and fall/spring. My basal rates must be raised in colder weather, not because I exercise less, but due to the cold. And menstrual cycles also make a difference. It might be appropriate to have a couple of different basal patterns, one for the pre-menstrual days and another for the regular days. I was on injected insulin during that part of my life and had to adjust the amount of long-acting insulin.
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I have had T1D for a long time. My Endo has recommended that I can make changes, only do it in very small increments and then wait for results. You then can repeat making small changes again and then wait and see if the results is what you want. Be sure and record what changes you have made and when. Then you can discuss it with your daughter’s endocrinologist. The big thinks is to record any changes and do it slowly. If you do not get the results you want, then you can revert back to the previous settings.
Hi @dsiizuka. I’ve been using a pump for over 20 years now and am comfortable making changes on my own. I have found that very small change can make a big difference, so don’t do anything too drastic. The first time I made my own adjustment I was having frequent lows during a particular time period. So I decreased my basal rate by a full unit - which was WAY too much - next thing I knew I was running high as a kite during that time period. I’ve since discovered that just a couple of tenths of a point tends to work for me. Suggest you proceed conservatively.
I have had T1D for 67 years, so I have expertise concerning my condition. I have been on a Medtronic pump since '93. I only see my DE once every three months and calling is hit or miss. So, yes, I sometimes make tweaks in my basal because I can see a similar chart that my DE sees through DexCom Clarity. So I would encourage you to make occasional changes, but be sure to discuss them with your DE when you meet with him/her.
Hi Dani I am relatively new to the pump scene, but I have been adjusting my own insulin doses for more than 20 years. Just go slow and watch for patterns over a period of a few days. Minor tweaks are less likely to get your daughter in serious danger and everyone has random highs or lows from time to time. Treat any severe symptoms as necessary. Just don’t panic and watch for somewhat consistent highs or lows at certain times of the day and then adjust basal accordingly. Not all doctors are equal. Often they are overworked and can’t take the time to effectively work with all of there patients. If the doctor your daughter is seeing isn’t helping effectively or communicating effectively it may be time to switch…