4 ms·

Yep. My wife is T1D and this is infuriating for her. She’ll think that she’s cracked it, and then the next day, with the same meal at the same time, her sugar

Yep. My wife is T1D and this is infuriating for her. She’ll think that she’s cracked it, and then the next day, with the same meal at the same time, her sugar levels go high. Her words: there is nothing else where you have studied for over 30 years and STILL feel like you know nothing. It is incredibly demoralising for her sometimes - especially when she’s suffering also from a high/low sugar level. I have the upmost respect for anyone having to do the amount of work, to get to zero (sometimes).

deleted 1y ago
[deleted]
ddorian43 1y ago
How about just not eat carbs at all and have more consistent & lower blood sugar? (this was an interesting case https://www.youtube.com/watch?v=CG8UU7P8FBU https://www.youtube.com/watch?v=CG8UU7P8FBU) I do keto diet long term but for other reasons, often the epilepsy version where it's more strict and higher fat.
- jzacharia 1y ago
  Keto works well, but I'm concerned about the extreme fat intake. I did manage to lower my A1C from 9s to mid 5s using Keto as a T1D, but eventually settled into a high protein, moderate fat, low-ish carb diet and that has worked pretty well without being hyper-restrictive. Heavily inspired by the late Dr. Richard K. Bernstein.
  - ddorian43 1y ago
    I target for high ketones (1.5+) & low glucose 4-5mmol (blood test 1 hour after wake up) and higher protein interferes with both of them.
    - jzacharia 1y ago
      Curious - what's the reason for targeting ketone levels?
      - ddorian43 1y ago
        Better mental health.
- GuinansEyebrows 1y ago
  every endocrinologist i've ever had says you need at least some carbohydrates. that said, they're usually not nutritionists, and there's historically been so little focus on food as medicine within western medicine that i think we "officially" know as much about that as we do about diabetes at all (which is a lot, but still surprisingly little). there are plenty of good reasons we eat carbs (especially complex carbs, plus trying to avoid processed stuff); as a diabetic you just have to prepare ahead of time. it sucks, but honestly, as a 20+ year T1D, not eating cake sucks more than having to plan to eat cake :)
  - ddorian43 1y ago
    > not eating cake sucks more than having to plan to eat cake :) But you have never felt the alternative. It's not just eating cake. You have to see the whole video that I linked to understand the differences (they might not all apply). Think a smoker who've never known what's it like without smoking.
- broost3r 1y ago
  dad of an 8 y/o T1D here, and tbh, "how about just ..." is about the worst thing you can say to anyone dealing with this, especially given the subject of this post. things are just never the same. maybe they will be later in adulthood? i feel like i'm in a position to beta test this with my kiddo and i don't like it at all.
  - ddorian43 1y ago
    I understand that T1D is special, but this is said for every disorder. There are many levels to keto diet, and believe me, you can't do the epilepsy version even if you'd wanted, it takes time and hard effort, for children it's done inside a hospital. So assuming you watch everything they eat, you can keep track of GCM, and try very slowly. Like going from 60-30-10 carb-protein-fat to 50-30-20 ratio, do they have better consistent blood sugar ? There should be protocols to do this for T1D the safest way. Watch the video.
coldpie 1y ago
I'm also T1D and yep. That's how it goes. Despite having one of the same two breakfasts pretty much every workday for a decade, it's a crapshoot whether I'll be 300 (very high) when I get to work or 50 (very low) or 110 (good). I just have to adjust when I get in to the office. Most days I deal with it fine, but every once in a while I get fed up with it and want to throw something.
- rigrassm 1y ago
  Right there with ya. The most frustrating aspect of the beetus for me is how inconsistent glucose/insulin responses are, drives me absolutely mad
je42 1y ago
More data can help inform semi closed loop systems to deal with this variability. For example, AAPS has since version 3.2 dynamic IFS. ( https://androidaps.readthedocs.io/en/latest/DailyLifeWithAaps/DynamicISF.html https://androidaps.readthedocs.io/en/latest/DailyLifeWithAap... ) For me this works quite well
- mikelward 1y ago
  *ISF (Insulin Sensitivity Factor)
- rigrassm 1y ago
  Still pissed my insurance stopped covering the Omnipod Dash last year, especially since the 5 is just an artificially locked down dash. Omnipod 5 automated mode is garbage compared to aaps
- stranded22 1y ago
  Thank you, I’ll check it out
RHSeeger 1y ago
I like to say that the CGM is, far an away, the biggest life improvement for diabetics since the invention of insulin. And this plays into one of the reasons - You able to learn better about how your body responds to different foods - You are more secure about your blood sugar dropping when you don't expect/realize it (sleeping, driving, etc) - You better able to detect when your body isn't behaving the way you would normally expect it to (the point we're discussing here)
- stranded22 1y ago
  She’s on closed loop and it has certainly changed her life - perimenopause was really difficult but the loop has meant she has much better control. The fact it cuts out when it drops has given her confidence to sleep better etc

deleted 1y ago

[deleted]

ddorian43 1y ago

How about just not eat carbs at all and have more consistent & lower blood sugar? (this was an interesting case https://www.youtube.com/watch?v=CG8UU7P8FBU https://www.youtube.com/watch?v=CG8UU7P8FBU) I do keto diet long term but for other reasons, often the epilepsy version where it's more strict and higher fat.

jzacharia 1y ago
Keto works well, but I'm concerned about the extreme fat intake. I did manage to lower my A1C from 9s to mid 5s using Keto as a T1D, but eventually settled into a high protein, moderate fat, low-ish carb diet and that has worked pretty well without being hyper-restrictive. Heavily inspired by the late Dr. Richard K. Bernstein.
- ddorian43 1y ago
  I target for high ketones (1.5+) & low glucose 4-5mmol (blood test 1 hour after wake up) and higher protein interferes with both of them.
  - jzacharia 1y ago
    Curious - what's the reason for targeting ketone levels?
    - ddorian43 1y ago
      Better mental health.
GuinansEyebrows 1y ago
every endocrinologist i've ever had says you need at least some carbohydrates. that said, they're usually not nutritionists, and there's historically been so little focus on food as medicine within western medicine that i think we "officially" know as much about that as we do about diabetes at all (which is a lot, but still surprisingly little). there are plenty of good reasons we eat carbs (especially complex carbs, plus trying to avoid processed stuff); as a diabetic you just have to prepare ahead of time. it sucks, but honestly, as a 20+ year T1D, not eating cake sucks more than having to plan to eat cake :)
- ddorian43 1y ago
  > not eating cake sucks more than having to plan to eat cake :) But you have never felt the alternative. It's not just eating cake. You have to see the whole video that I linked to understand the differences (they might not all apply). Think a smoker who've never known what's it like without smoking.
broost3r 1y ago
dad of an 8 y/o T1D here, and tbh, "how about just ..." is about the worst thing you can say to anyone dealing with this, especially given the subject of this post. things are just never the same. maybe they will be later in adulthood? i feel like i'm in a position to beta test this with my kiddo and i don't like it at all.
- ddorian43 1y ago
  I understand that T1D is special, but this is said for every disorder. There are many levels to keto diet, and believe me, you can't do the epilepsy version even if you'd wanted, it takes time and hard effort, for children it's done inside a hospital. So assuming you watch everything they eat, you can keep track of GCM, and try very slowly. Like going from 60-30-10 carb-protein-fat to 50-30-20 ratio, do they have better consistent blood sugar ? There should be protocols to do this for T1D the safest way. Watch the video.

coldpie 1y ago

I'm also T1D and yep. That's how it goes. Despite having one of the same two breakfasts pretty much every workday for a decade, it's a crapshoot whether I'll be 300 (very high) when I get to work or 50 (very low) or 110 (good). I just have to adjust when I get in to the office. Most days I deal with it fine, but every once in a while I get fed up with it and want to throw something.

rigrassm 1y ago
Right there with ya. The most frustrating aspect of the beetus for me is how inconsistent glucose/insulin responses are, drives me absolutely mad

je42 1y ago

More data can help inform semi closed loop systems to deal with this variability. For example, AAPS has since version 3.2 dynamic IFS. ( https://androidaps.readthedocs.io/en/latest/DailyLifeWithAaps/DynamicISF.html https://androidaps.readthedocs.io/en/latest/DailyLifeWithAap... ) For me this works quite well

mikelward 1y ago
*ISF (Insulin Sensitivity Factor)
rigrassm 1y ago
Still pissed my insurance stopped covering the Omnipod Dash last year, especially since the 5 is just an artificially locked down dash. Omnipod 5 automated mode is garbage compared to aaps
stranded22 1y ago
Thank you, I’ll check it out

RHSeeger 1y ago

I like to say that the CGM is, far an away, the biggest life improvement for diabetics since the invention of insulin. And this plays into one of the reasons - You able to learn better about how your body responds to different foods - You are more secure about your blood sugar dropping when you don't expect/realize it (sleeping, driving, etc) - You better able to detect when your body isn't behaving the way you would normally expect it to (the point we're discussing here)

stranded22 1y ago
She’s on closed loop and it has certainly changed her life - perimenopause was really difficult but the loop has meant she has much better control. The fact it cuts out when it drops has given her confidence to sleep better etc