Advice for a new pump user

To make a long story short… I have been diabetic for 22 years but have now started having issues with my eyes which resulted in me getting a pump. I wasn’t thrilled with the idea for a long time but now that I have it I actually really love it. I have the tandem Tslim x2.
Like I said the whole pump thing is great but getting everything figured out is not. my doctor is NO HELP at all. I mean none. I don’t even think he looks at my numbers I upload and send to him and when I call the office I talk to nurses who “can’t recommend dose changes”…so I continue to figure things out on my own and with help from other T1D people on this forum so I wanted to turn to you guys for some advice. Is there anything that really helped your figure out your doses when you first started out with a pump? (I have a lot of lows and highs, not a lot in between) Is there anything specific that you had problems with that I should be looking out for?
*Also I tried the extended release a few times but had a terrible time with it. I would like to figure that out so I can have a treat or two over the holidays!

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@ashleyx1356, do you have a CGM?

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The book Pumping Insulin by John Walsh is a great book, 6th edition.

Think Like a Pancreas by Gary scheiner is also good, and some of his stuff is on his website, integrateddiabetes.

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I read the book. A better title would be: “How to manage diabetes without a CGM”. There is a lot of good information in the book. However, what it should say is: “Get a CGM”. Diabetes is a very simple game: One Up Button (food) and one Down Button (Insulin) with the objective to keep the dot (BG) in the target range. It is obvious that you can play the game better if you can see the dot.

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Unfortunately a non insulin using doctor doesn’t really get it? They can only talk about what they’ve read to do or if they see a lot of pump patients they might have some tidbits to offer. Here is the parameters of what you should do type thing.

Even my husband who’s been around me doesn’t really get it, I mean he knows what I do, but I’m not sure if you questioned what dose to give when on this food he would really have a clue? And he is around me all the time. So a doctor just gets articles they read and maybe small tidbits from patients.

Both the books above should really be able to help. I’m sure if you ask specifics we can tell you what we do.

First get a Dexcom CGM if you don’t have one.
Second The doses themselves might not even be the issue, it could be the timing?

My pump might be different from yours, I have an Omnipod, but I eat what I want as long as I dose for it? So I’m not sure what you mean by needing the extended release for the treats for holidays?

I use extended release probably daily. Say my meal is going to be 30 grams of carbs.
On my Omnipod a half hour before I eat a “normal” meal. I will put in 30 carbs, it will figure out the dose needed per preset numbers, then I hit extend 50% of it for 30 minutes later. That way some is hitting my system by the time I actually eat, and more is set up to be released at the time I eat. This would be for a lower fat meal, fat changes my timing to dosing when I eat and a half hour after and maybe even another half hour after that.

If you are more sensitive to insulin than me the half a half hour before might be too much? You can try a third before?

I have DP, so I have a tendency to need more insulin per carb in the am versus at night.

Hope this helps!!!

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I dont yet! The tandem people tried to convince me to get one but I didn’t understand why. Now that I have the pump I understand why they wanted me to get it in the first place so im currently working on getting the Dexcom g6.

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I have been reading that higher fat foods require extended release. unfortunately the person who trained me to use the pump did not even tell me this feature existed, I found it on my own. Im getting the feeling that the only way I will figure things out is by getting the GCM which is taking a while for some reason but that’s okay. Some days I do okay and other days I want to throw the pump out the window!

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Get the dexcom G6 and enjoy it’s integration with the Basal-IQ.
It is worth it on so many different levels.

The pump will soon become a thing of wonder rather than wonder if you should have it.
There are a LOT of posts by a lot of very knowledgeable people on here. Sit back, read, search, read some more.

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Oh, and if you use an android phone, when you get the dexcom, install xdrip+.
It will give you tons of information that will help you smooth out those rollercoasters.

@ashleyx1356, I got the CGM first and the pump later. Most people value the CGM more than the pump. Much more !!!. Your life will be so much easier once you have a CGM.

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Someone already mentioned it, but I’ll chime in. Get Pumping Insulin, by John Walsh. You will be so thankful that you bought it.

I am of the opinion that it is medically irresponsible for them to be handing out pumps without a CGM. I’m not convinced that it is even possible to manage a pump without a CGM and definitely makes things risky. Make them give you one. They owe it to you.

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It’s different every hour of every day. If you read old books about pumping they will talk about the need to get your basal, carb and sensitivity ratios right. It’s good to use these things as a baseline, but unfortunately the body has different insulin needs every second of every day and it’s impossible to meet these needs by using static ratios. I could eat the same thing at the same time two days in a row, take the same amount of insulin and have wildly different results. Also stress, exercise, hormone fluctuations, how insulin is absorbed at the injection/pump site, how fast your body digests what is being eaten and a million other variables influence what your BG will do at a given moment. A CGM is the best tool yet to deal with all of this, pump or no pump.

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What Gary Scheiner shares about determining initial pump settings and fine tuning over time is so, so helpful. It can make the difference between the doctor/clinic being in charge of your settings or you owing your treatment decisions. I always recommend a savy diabetic read his book twice. It’s that good. And to get full use of a Dexcom I’d recommend _Sugar Surfing-, by Stephen Ponder. It was a game changer for me.

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I agree that a CGM is crucial to your own customized personal education as to how your glucose metabolism works – provided you pay attention.

Invest in your understanding of current diabetes treatment tools. I would devote regular time to reading the books recommended. I would also keep a journal so that you note things like insulin dose size and timing for various meals. Writing stuff down increases the possibility that it will really sink in and become part of how you think about treating diabetes.

If you don’t do the deep dive on how your diabetes works, your efforts will not work as well. There is really no short-cut to this! You are worth it; invest in your health.

We are quickly moving into a world where automated systems, for you the x2 with Control-IQ and the G6, that will make your personal understanding a little less important to your daily treatment. I contend that a good understanding of how your personal metabolism works will still be an important asset even as automation settles in. You will be a better user of the automation if your basic understanding of insulin treatment is sound.

By the way, it took me a long time to discover and effectively use extended insulin doses. I did a specific calculation based on the grams of protein and fat for delivery of the extended bolus. I also delivered a separate bolus based on the carbohydrate content of the meal. If you’re interested in the details, I will provide them.

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I think that’s a bit over the top. I have pumped since 1996 and got far better results than on MDI, w/o the use of a CGM. My CGM, of course, alerts me to highs and lows, which is awesome, but to say that it “irresponsible” for patients to be sold pumps without CGM’s is quite a stretch of reality. And let’s not forget that for some people, CGM’s just don’t work with a darn. I’ve spent many an hour reading complaints about the G6, all of the Medtronic CGM’s ever produced, and even a few problems with the G5. CGM tech has not yet been perfected. Would I want to give up my CGM? No, because my body and the G5 work well together. It remains to be seen if that success will translate to the G6 in a month or two.

@Helmut, this is a simple but absolutely fundamental point you make. A lot of the medical professionals in the UK have advised us based on not having ‘the dot’.
Rule1: 4 is the floor.
But 5 is the time to act. We have only worked that out through experience, but I’m intrigued how we are in the midst of a fundamental change in medical and technologically based advice based on we now have a highly accurate ‘dot’. Which contextualises greatly. Would that be fair to say??

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Hi Dave, great to hear you have managed without a CGM so well, and you’re correct, there are a huge amount of posts regarding people reporting inaccuracies with Dexcom. We have a slightly different situation, our daughter has always been asymptomatic so a CGM is the only way we have been able to achieve any sense of good management. The thought of being without it Dave scares me more than I can write. But I appreciate your resilience.

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I feel like they tried to get me GCM when I got my pump but nobody really told me why I needed it and what a difference it would make…so without knowing that I figured lets learn one thing at a time. Only about a week after having the pump I regretted that decision!

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Not only does the CGM show you what you numbers are, and have been, and predict the near future trend.
But, and I find this the most important for setting my basals, is that you can see how you have been averaging over different periods of time.
We all know that every day varies with this disease, but when you look at a graph that shows what your BG looks like over the last two weeks, you have a much better understanding of when you should change your basals to compensate.

It really gives you the power to take charge of your own settings.