FUDiabetes

Three months pumping and really frustrated

exercise
hormones
insulin_pump

#122

They probably ran some experiments themselves before they networked with the trout

That’s a good topic for some more Eric experiments

You can mix R with semen to get tresiba and there’s an unlimited supply of donors at any local homeless shelter.

This is why NPH is cloudy.


#123

Hi @TiaG, no, I have not looked into that approach. I think I’ve seen a post by Marius with some good results, but I do not know if he has his code or anything else available for review.


#124

Your approach sounds eminently reasonable and I wouldn’t suggest to do otherwise.


#125

My 2 cents here. I am the Head Coach of a Swim Team and also coach an adult T1 triathlete swimming. My 16 year old not diabetic daughter is a competitive swimmer. My son is Type 1, 13, and a competitive cyclist training at a pretty high level. We have learned that what my DS does during a training ride will affect his bgl for up to 48 hours after. It is important to understand the body seeks to replace glycogen used during exercise directly after (requiring extra carbs) and then again 8-10 hours later which can result in lows. Swimming is a doozy as you use all of your muscles and so glycogen stores can be depleted from all your muscles meaning you body has to work immensely hard to restock. This is why the exercise bike doesn’t work the same as swimming. Something to try, which will mean loosening up somewhat on control is to 1. Don’t start swimming till bgl around 160 and 2. continually restock glucose to maintain a good amount of circulating glucose. For instance my adult T1 swimmer struggles a bit with swimming, he has a gel after 30 minutes. My son has a gel every 45 minutes on the bike.

Unfortunately we swim coaches don’t encourage our swimmers to fuel during practice. Why, I don’t know! My top swimmers train for 2 hours on water alone and in other sports, we would never expect an athlete to work hard for 2 hours without glucose (likely also electrolytes) let alone our T1 athletes.

Also extremely important is that exercise makes one insulin sensitive and it has a stacking effect. IE one day of exercise 10 % more sensitive, 2 days in a row 15%, 3 days in a row 25% etc. So there is another variation.

We are currently mdi (getting a pump hopefully by January) and hate it as we can’t get steady numbers on a 24 hour insulin. And we totally adjust it to reflect his activity levels. But it never goes lower than X or higher than Y unless he is sick. We then adjust the lows (mostly) by adjusting the fast acting and carbs. We have decent control that way but not fabulous (too many lows). I anticipate on the pump, we will turn his basal down prior to exercise and during exercise to attain higher blood sugar during exercise. If my DS was to start an intense 2 hour ride at bgl of 120, he would be low in a heartbeat and struggle to get up to over 70. We’d also have a horrendous night after and then a day of high and low swings trying to get steady again.

Hope you find a solution. Try keeping a detailed log of exercise including perceived exertion (and he can take his HR at set points himself) and then compare it to CGM readings to see if you can spot the pattern. Hard work but you’d be amazed at what you can find out. Also I strongly encourage him to take on glucose while training if he isn’t already.

Good luck!


#126

Hi @EliLucas! I was just passing through and saw you talking about being a swim coach. If you haven’t already, I’d recommend you take a look at Daisy Mae's swimming BG thread.

I have no idea if I attached that correctly. It’s “Daisy Mae’s swimming Bg Thread”. There is tons of information that might of interest to you.


#128

A year later… this was a very good thread… how’d the last year go?


#129

Since when is Looping with a Ping possible?!?! I thought only Medtronic pumps were compatible?

I know this is an old thread, and I hope that you have worked things out, @Michel. I do want to say, though, that I totally agree with others on the importance of sleep. People tend to forget that poor sleep quality has major health consequences. It’s been shown to affect everything from blood sugar to risk of heart disease. Lack of sleep in and of itself could actually be making BG control more difficult. I have been working a lot on my sleep with my recent diagnosis of sleep apnea, and my blood sugar has been much more stable since I have been consistently getting 8-9 hours of solid sleep a night. It is not totally without interruptions as my Dexcom does often alarm, but I have made adjustments so that it doesn’t alarm nearly as much as it used to.

I have my CGM targets set at 4.0 - 10.0 mmol/L (70-180 mg/dl) to reduce the alarms I get. During the day, I often correct before it hits an alarm level. Overnight, I really don’t worry about my blood sugar as long as it’s in that range. A night of skimming 10 mmol/L is not going to kill me, and if it’s happening night after night, I can make adjustments to fix it. If I happen to wake up and glance at my CGM and I’m sitting at 9.5 mmol/L, I’ll give a small corrective nudge, but I’m certainly not losing any sleep to fix it the way I would for a low or a serious (> 14 mmol/L or so) high. As a kid, like @Eric and @cardamom, I was responsible for getting up and treating my own lows. But we didn’t have CGMs, and certainly weren’t aiming for such a tight range as 80-120 mg/dl.

I also agree with @cardamom to be careful about language… Remember that you guys have lived with this for two years (three years now!) and are hopefully going to live with it for another 75 or more years! That is a long time, and there will definitely be times in there that control is more difficult than others. And I don’t know if you’ve had any testing done, but if you have only had diabetes for two years, it’s also very possible that K actually still had some small amount of residual insulin production going on and may have been in a light honeymoon that is now ending, especially if you’ve had an A1c of 5% for that entire time.

I totally get you on the variable basal needs, though. Basal needs do change and it is a very real issue. But if you are aiming for such a tight target, I agree that I would not be changing basals on a daily basis. I change my permanent basal rates about once a week, and I do use temporary basal rates almost every day in response to things like exercise or trending lows. But I’m also using a much broader target than you guys are using. The more you try to correct in either direction, the more unstable things do generally become, because thre are more variables (carbs and insulin) in the system at any given time. I also always change out my pump site before touching basals, because often a new site (or relocated site in my case) will solve the issue.

Anyhow, this is an old thread, so hopefully all of these issues have been sorted out.


#130

I looked at https://openaps.readthedocs.io/en/master/docs/Gear%20Up/pump.html and the diagram hints that it may be possible to hack something forked off of openAPS that uses the ping. But it would all be done with boluses, not temp basals.

According to David Burren at https://bionicwookiee.com/2018/11/20/closed-loop-pump-options-november-2018/ the pump options for looping (in Australia) are the old Medtronic pumps, the Dana RS, the Dana R, and the Accu-Chek Combo.


#131

So… there is one person who has hacked his daughter’s Animas Ping to create a closed-loop algorithm. He actually has created his own algorithm, which doesn’t follow the principles of openAPS, and actually uses some machine learning: Here’s a very simplified blog post about it:

Honestly, I think his logic makes more sense for closed-loop than does the openAPS logic, which tries to map directly onto the basal/bolus/ISF methodology that all of us use when we’re first diagnosed. That makes it easier to understand but I don’t think it’s necessarily the best possible for controlling glucose.

When Samson was first diagnosed, my husband spent several weeks trying to follow this protocol to hack our own Animas Ping, which we’d literally just gotten, but we eventually abandoned the process because getting the pump to talk to the Pi wound up being really difficult.
I also think Marius has kept his work a little bit less public than the folks who do openAPS/Loop.

It’s too bad because I love the idea of using some machine learning to discern patterns, and I also love the idea of using just one parameter rather than three different “knobs” you have to tune in your algorithm. But ultimately there was just too much of a barrier to it being widely used.


#132

I’d go so far as to say that this thread, then fast forwarded a year, is an amazing case of the pumpers dilemma phenomenon that I’ve postulated


#133

What do you mean?


#134

People get on a pump, then in some cases even with way more frustration and way worse results, they become convinced they can’t live without it… it’s a psychological one-way street. It’s a bizarre phenomenon… this thread is a pretty good illustration of it though


#135

Well, I think that depends on whether they are doing better or worse a year down the road.

I periodically try MDI and am always grateful to return to my pump.


#136

As do we Jen. Our endo requires us to be on MDI at least one month each year, and we dutifully do as asked, but are always grateful to get back to the pump. With the teenage hormones the pump is very helpful, as well as not having to plan out meals so much.


#137

I’m not required to do it. But I have backup Lantus (and now also Tresiba) in my fridge, and every once in a while I feel like I have to use it up, and every once in a while I also get frustrated with my diabetes and wonder if the pump is causing the frustration. So usually once or twice a year I’ll give MDI a try. Often it only lasts a few days before I’m back on the pump. In January I tried Tresiba for a month, which is longer than usual. But that seems to have held me over for a year, as I haven’t felt the desire to try MDI again since then.


#138

I agree, a year is a good time-frame


#139

@EliLucas, great to see you here! It is wonderful to see you offer suggestions based on a whole team of T1s!

This is a pretty old thread, which I can’t really say was resolved (is it ever?) but where we have made lots of progress. I will make some comments below.

You are describing my son’s routine pre-pump: start swimming higher than 125, get out to test every 20 minutes, take 15 grams of glucose every 20 minutes. It worked almost perfectly on MDI for over a yearf. There was also another routine for refueling.

On the pump, it was a lot easier: lower to -50% temp basal 45 minutes before practice, test every 20 minutes, use glucose as needed. Same refueling routine as before.

Yes. This is fairly similar to us, although we can see -30% with daily ongoing swim practices.

See above: my son has started many practices at 125 with a few carbs to start with (i.e. eat a few carbs right before starting practice if he is at 120-125): no problem (for him) as long as he gets his 15 carbs every 20 minutes.

We figured out what the problem was, but never quite found the solution he wanted. The issue was:

  • exercise changes insulin needs between 0% and -30%
  • lack of sleep and stress change insulin needs between 0% and +30%
  • schedules that change all the time, every day of the week, where you play 3 different sports with very different profiles, have lots of extracurricular, and leave you with not enough sleep during the week, result in very difficult management problems.

We found out, further, that:

  • going back to MDI made it much worse
  • going on vacation with no hard schedules suppressed all problems.
  • taking down the number of sports and the number of activities made it much more manageable (although not perfectly, unfortunately), but at the cost of not being unlimited.

Thanks again for your post, which I think was great! I hope you keep on posting: we all have a lot to learn from you and your team. If you want, you could get your son in touch with mine when he is ready to start pumping, my son will gladly share his sports routines with him.


#140

It was not. My son practically stopped posting for a few months because of this thread and a couple of others, where some people totally discounted his experience, and assumed that their experience applied to him.

The last year has taught us a lot, but not quite enough. I summarized it in my post to @EliLucas. To respond specifically to your question in the light of your previous comments:

  • Exercise makes my son’s basal vary between 0% and -30%, while lack of sleep and stress do the same between 0% and +30%.

  • MDI makes everything harder (really, impossible) to manage.

  • We found truly chaotic schedules of sports and extracurriculars to be impossible to manage (in terms of BG), and had to simplify quite a bit. This brought us to a manageable but imperfect control situation.

  • the big mistake was to start pumping right before school start. Had we started in the middle of summer, we would have known what was to blame earlier. That is one lesson we learned painfully.


#141

Well that’s what forums are helpful for, Michel, we share experiences and pick up little pieces of insight from other people’s experience and apply them to our own situations… and hopefully we all end up benefiting


#142

So do I now :slight_smile: I think @dm61 was totally right on that.

At the same time, as parents we sometimes have to make difficult choices, and we tend to prioritize our chidlren first. This is a choice that sometimes costs us personally. As for me, I would sacrifice a lot to enable my son to survive these difficult puberty years with as little damage as possible. I don’t have a lot of years ahead of me but he does!

Your feedback has been super helpful to us in those past many months to figure out what we needed!

The problem with Omnipod (and maybe with other pumps) is that it is not possible to schedule more than one temp basal. We always start with temp basals, but we typically find, for what we see, that within 6 hours of our last bolus we are able to determine a lasting basal. For us, we typically do up to 3 bolus corrections before adjusting basal for 12 hours. Beyond 3 bolus corrections, we know that we have a longer-term issue, and, instead of setting up time-limited basals, we set up an indeterminate-time basal, either as a long-term temp basal that needs renewing every 12 hours, or, more often now, a new profile. Because, over the past year, we have learned to evaluate new basal needs faster, we are able to adapt better—although not, unfortunately, perfectly.