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The Unreasonable Math of Type 1 Diabetes

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Re: The Unreasonable Math of Type 1 Diabetes

#41

Post by pimeys »

brainlessdev wrote: post #22
Trasmatta wrote: post #15

Earlier quoted context omitted.

Thanks for the kinds words. The primary problem with those types of treatments is you have to be on immunosuppressants, or the immune system just kills the cells again. That type of treatment is typically not recommended unless the patient is already on immunosuppressants, or has extreme hypoglycemia unawareness, or extreme needle phobia. Immunosuppressants are typically considered a worse outcome than properly treat…

I've been following the press about closed loop artificial pancreases closely, too. Currently, the open-source solutions there are require using insulin pumps that are pretty big and for some, that's not a choice they're ready to make. I too hope this tech continues to advance quickly.

The AndroidAPS works with many Omnipod models, and with DanaRS or Accu-Chek insight which are all quite small pumps.

If you have the knowledge, I can highly recommend doing some research and try looping. I've been doing it now for three years. Time in range is about 92%, A1c always 5.8-6.0%. 80% of the stress is gone. Life is better.

But, it's not accepted therapy and you have to do lots of research to learn how to use the systems. For me it has worked like nothing else. I got my life back after 21 years of suffering with T1D.

Re: The Unreasonable Math of Type 1 Diabetes

#42

Post by jnsie »

zaroth wrote: post #6
semenko wrote: post #4

Hey Graham -- great post! The Medtronic / Guardian sensor combo is generally disliked by patients, though (in the US) the Medtronic 770G is FDA approved for ages 2+. Most prefer the t:slim X2 with "Control-IQ" (their hybrid closed-loop: https://www.tandemdiabetes.com/products/t-slim-x2-insulin-pu... ), which is FDA approved for ages 6+, and works great. The bleeding edge is the Beta Bionics ( https://www.betabionics.…

Bi-hormonal was always something I thought they should do but didn't know anyone was actually trying it! Thanks for the link. Although in theory you've screwed up if you need to bolus glucagon. Also, I can't imagine it feels all that great to be getting exogenous glucagon.... But from a safety perspective, having the device have a reserve tap of glucagon ready to deploy allows the algorithm to deploy full insulin dos…

> Although in theory you've screwed up if you need to bolus glucagon.

Not at all. There are myriad reasons why one might go low despite doing everything right. For instance, unanticipated cardiovascular activity. T1D is a 24/7/365 PITA and one cannot anticipate everything, even with the best will in the world.

Re: The Unreasonable Math of Type 1 Diabetes

#43

Post by jfengel »

Trasmatta wrote: post #23
jimmaswell wrote: post #17

Earlier quoted context omitted.

> a near future where technology paliates some of the dread of living with T1D I thought pump implants already did that, what's missing?

Pumps aren't implants, you replace them regularly. They are a massive improvement in care for many people, but they do not remove the daily toil of managing diabetes. Personally, I found a CGM to be even more helpful than a pump. Closed loop artificial pancreases are the future, but they will still require a large amount of attention and management by the patient.

Indeed. I am not diabetic, but a close friend is, and I have observed all of the effort and uncertainty that goes into it.

My friend got a new high-end closed loop system, and it's so much better than the previous pump. There's still a long way to go before it's truly an artificial pancreas, but my friend already has much higher quality of life, and the tech is still improving.

Re: The Unreasonable Math of Type 1 Diabetes

#44

Post by coldpie »

mellavora wrote: post #35
sweston4 wrote: post #19

I'm a type 1 diabetic and data scientist. Estimating the causal effect of a unit of insulin or food on blood sugar is an absolute crap shoot. Consider that there's a +/-20% margin of error on the reported carbohydrates on nutrition facts. We might consider this irreducible error that just cannot be modelled (Maybe you could get a calorimeter, estimate the distribution of errors, and reduce that error somewhat). There…

> that would kill you if the resulting low blood sugar is not dealt with. My wife is type I, so I have a sense of what you live with. She bought a book, "The Insulin Murders", which looked at a number of cases where insulin was the weapon of choice. The good news is that it is actually really hard to die from low blood sugar, assuming good medical care is available. Coma to death is > 12 hours, more like 24 or 48. As…

> The good news is that it is actually really hard to die from low blood sugar, assuming good medical care is available.

Yes, but the bad news is it only takes one mistake to do you in, and the battle never stops for your entire life. I had a fellow T1D friend die last summer from hypoglycemia. Wikipedia says (with a citation, available at link):

> In terms of mortality, hypoglycemia causes death in 6-10% of type 1 diabetics.

It's the kind of thing that hangs over you. Every time you go to sleep, you wonder if maybe you took too much at dinner and this will be your last night. (I'm sure you know this from your wife--there's a reason she was interested in that book--but the reading audience may appreciate the context.)

[1] https://en.wikipedia.org/wiki/Hypoglycemia

Re: The Unreasonable Math of Type 1 Diabetes

#45

Post by not2b »

My wife developed type 1 diabetes as an adult (40s) from an autoimmune disease (it attacked her thyroid as well). At first her pancreas still had a bit of function left, which made things even harder because there would be unknown random extra insulin, so the only way for her to manage was to eat ultra-low carb and not very much, so she lost a ton of weight. She actually did better once her pancreas no longer produced insulin, because then the calculations all type 1 diabetics must do would actually sort of work (and I emphasize "sort of", for all the reasons explained in the articles and comments) and she could eat a bit more normally.

A problem not mentioned in the article is that the different insulin formulations that are supposedly in the same category (fast acting vs basal) have somewhat different curves, and our insurance company keeps making her switch formulations depending on whatever is cheapest this month, and whenever she switches the calculations are off so she suddenly has to deal with more highs and lows.

Re: The Unreasonable Math of Type 1 Diabetes

#46

Post by pimeys »

mellavora wrote: post #35
sweston4 wrote: post #19

I'm a type 1 diabetic and data scientist. Estimating the causal effect of a unit of insulin or food on blood sugar is an absolute crap shoot. Consider that there's a +/-20% margin of error on the reported carbohydrates on nutrition facts. We might consider this irreducible error that just cannot be modelled (Maybe you could get a calorimeter, estimate the distribution of errors, and reduce that error somewhat). There…

> that would kill you if the resulting low blood sugar is not dealt with. My wife is type I, so I have a sense of what you live with. She bought a book, "The Insulin Murders", which looked at a number of cases where insulin was the weapon of choice. The good news is that it is actually really hard to die from low blood sugar, assuming good medical care is available. Coma to death is > 12 hours, more like 24 or 48. As…

It adds a bit to the risk that going down to hypoglycemia is not very good for your brain cells. And staying in hyper is not good for your cells in general, for your eyes or for your internal organs.

You might not die, but might develop some nasty problems later on in your life...

Re: The Unreasonable Math of Type 1 Diabetes

#47

Post by The_rationalist »

Trasmatta wrote: post #8

I'm a type 1 diabetic, and this was a helpful post at showing non diabetics why it is so. hard. Non diabetics typically think the difficult thing must be the shots and the finger pricks, right? Not really. The majority of diabetics get used to those things quickly (of course there are some of course that deal with a major major needle phobia that can make it even harder). The hard part is that it never ends. Almost e…

No post body was provided.

Re: The Unreasonable Math of Type 1 Diabetes

#48

Post by pimeys »

bleair wrote: post #24
semenko wrote: post #4

Hey Graham -- great post! The Medtronic / Guardian sensor combo is generally disliked by patients, though (in the US) the Medtronic 770G is FDA approved for ages 2+. Most prefer the t:slim X2 with "Control-IQ" (their hybrid closed-loop: https://www.tandemdiabetes.com/products/t-slim-x2-insulin-pu... ), which is FDA approved for ages 6+, and works great. The bleeding edge is the Beta Bionics ( https://www.betabionics.…

There's also two "open source" systems - https://loopkit.github.io/loopdocs/ - https://openaps.org/ Tidepool is also trying to take the loop project and get a version of it FDA approved. Both of the open source projects require you to do the work and actively take control of your setup (a cgm plus pump plus phone). They have really nice support communities. I would never go back to not using Loop.

I'll be adding one more, I've been using this for some years now:

https://github.com/nightscout/androidaps

It's awesome.

Re: The Unreasonable Math of Type 1 Diabetes

#49

Post by coldpie »

tamaharbor wrote: post #40

I cried for days after my 11 year old daughter was diagnosed with Type 1 Diabetes. The first week we almost killed her with an Annie’s soft pretzel. It’s been better since then. It is possible to live a good life, and be healthier than many without the disease.

I don't know how long ago that was for you. I was diagnosed at 13 (in 2001). If it's managed well and she has support, and it sounds like it is and she does, then it does indeed get better. It sucks, but it doesn't need to dominate one's life, it just becomes a part of you and you move on with it.

Best.

Re: The Unreasonable Math of Type 1 Diabetes

#50

Post by pimeys »

jnsie wrote: post #42
zaroth wrote: post #6

Earlier quoted context omitted.

Bi-hormonal was always something I thought they should do but didn't know anyone was actually trying it! Thanks for the link. Although in theory you've screwed up if you need to bolus glucagon. Also, I can't imagine it feels all that great to be getting exogenous glucagon.... But from a safety perspective, having the device have a reserve tap of glucagon ready to deploy allows the algorithm to deploy full insulin dos…

> Although in theory you've screwed up if you need to bolus glucagon. Not at all. There are myriad reasons why one might go low despite doing everything right. For instance, unanticipated cardiovascular activity. T1D is a 24/7/365 PITA and one cannot anticipate everything, even with the best will in the world.

Or the classic: have lunch with your colleagues and then walk back to the office. I hope you didn't take all the insulin in the restaurant, just half and half back in the office. It's a nasty drop otherwise...
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