# New to forum, low-carber with 33 years T1D



## Terry O'Rourke (May 6, 2017)

I've been lurking on this forum for years. I'm an American and I like reading how a different culture deals with diabetes. I found it intriguing how forum members here influenced the low carb way of eating position of Diabetes UK. I feel you are years ahead of the social/policy positions of diabetes charities in the US. I'd love to learn more of that back-story!

Diagnosed as a 30-year old in 1984, I've always had an interest in diabetes tech and started wearing an insulin pump in 1987. I added a CGM in 2009 and switched to a carb-limited way of eating in 2012. (What took me so long?) That tactic served as a major inflection point in my diabetes health. 

My blood glucose numbers are substantially improved using low-carb eating. My time-in-range went from 50% to 85%+  with hypos limited to less than 5% of the time. I dropped my blood glucose average into the normal range, cut my total daily dose of insulin in half, and significantly reduced my glucose variability.

I now use an open source hybrid artificial pancreas system, Loop, to treat my diabetes. I'm six months in, experiencing substantive gains and still learning. I live in an urban setting, walk every day, don't own a car, and live with a hypoglycemia alert dog, my avatar for the time being.


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## Steff (May 6, 2017)

Hi Terry a warm welcome to the forum. Where are to from in America


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## Terry O'Rourke (May 6, 2017)

Hi Steff - I live in Portland, Oregon, now and have lived in California, Idaho, Minnesota, and Illinois. Thank you for the welcome. I've visited London a few times and thoroughly enjoyed my time there.


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## mikeyB (May 6, 2017)

Hi, Terry, and welcome. I hope you are going to thoroughly enjoy your time on the forum too. I live in a part of Scotland where we have snow capped mountains. We could compare notes


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## grovesy (May 6, 2017)

Welcome.


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## Bloden (May 6, 2017)

Welcome to the forum, Terry. Just out of interest, what's your typical lunch as a low-carber?


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## Greyhound Gal (May 6, 2017)

Hi Terry and welcome. Great to have people joining from other parts of the world and to see what is different re attitudes, treatments etc.


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## New-journey (May 6, 2017)

Terry O'Rourke said:


> I've been lurking on this forum for years. I'm an American and I like reading how a different culture deals with diabetes. I found it intriguing how forum members here influenced the low carb way of eating position of Diabetes UK. I feel you are years ahead of the social/policy positions of diabetes charities in the US. I'd love to learn more of that back-story!
> 
> Diagnosed as a 30-year old in 1984, I've always had an interest in diabetes tech and started wearing an insulin pump in 1987. I added a CGM in 2009 and switched to a carb-limited way of eating in 2012. (What took me so long?) That tactic served as a major inflection point in my diabetes health.
> 
> ...



Welcome to the forum and inspiring to hear  how well you manage your diabetes. I also am low carb and exercise though I don't use a pump and I have not heard of  a 'open source hybrid artificial pancreas system' . Can you tell us more?


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## pottersusan (May 6, 2017)

Welcome aboard.

I'd really like to hear more about your system. I use the Medtronic 640g with sensors. I know there is a newer 'closed loop' version (not that I'm very sure what that means) available in the States, but probably not available in the UK for two years.


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## Lindarose (May 6, 2017)

Hi Terry and welcome. Very interesting introduction from you   Look forward to hearing more.


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## Ljc (May 6, 2017)

Hi Terry Welcome.


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## trophywench (May 6, 2017)

'Closed Loop' means that the patient is supposed not to have to lift a finger, cos the machinery does the thinking for them - BG going down, stops or reduces insulin and vice versa - so it's more active than just the bit that turns the insulin off when you are TOO low.  ie More like one of them working pancreases we used to have !) I'm not sure how it copes with being 5-10 minutes behind the blood - but no doubt there's some MORE complicated algorithms that should deal with it!


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## TheClockworkDodo (May 6, 2017)

Hello Terry, and welcome 
Artificial pancreas system sounds really interesting - I'd like to hear more about it too.


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## Matt Cycle (May 6, 2017)

Hi Terry and welcome to the forum. 



Terry O'Rourke said:


> walk every day, don't own a car



That must make you a bit of a rarity in the US - both the walking and not having a car. 

The US seems to be much more progressive in the provision and use of technology for the management of T1.


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## HOBIE (May 6, 2017)

Terry O'Rourke said:


> I've been lurking on this forum for years. I'm an American and I like reading how a different culture deals with diabetes. I found it intriguing how forum members here influenced the low carb way of eating position of Diabetes UK. I feel you are years ahead of the social/policy positions of diabetes charities in the US. I'd love to learn more of that back-story!
> 
> Diagnosed as a 30-year old in 1984, I've always had an interest in diabetes tech and started wearing an insulin pump in 1987. I added a CGM in 2009 and switched to a carb-limited way of eating in 2012. (What took me so long?) That tactic served as a major inflection point in my diabetes health.
> 
> ...


Well done & Keep at it !


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## Wirrallass (May 6, 2017)

Terry O'Rourke said:


> I've been lurking on this forum for years. I'm an American and I like reading how a different culture deals with diabetes. I found it intriguing how forum members here influenced the low carb way of eating position of Diabetes UK. I feel you are years ahead of the social/policy positions of diabetes charities in the US. I'd love to learn more of that back-story!
> 
> Diagnosed as a 30-year old in 1984, I've always had an interest in diabetes tech and started wearing an insulin pump in 1987. I added a CGM in 2009 and switched to a carb-limited way of eating in 2012. (What took me so long?) That tactic served as a major inflection point in my diabetes health.
> 
> ...


Hi Terry and a warm welcome to our UK forum  - we are a friendly bunch of souls  - always helpful & supportive of each other no matter which Type of Diabetes we unfortunately have to endure. Interesting intro. Take care
WL 

Dx Type 2 April 2016
Metformin withdrawn 
Diet control and exercise only


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## Steff (May 6, 2017)

Terry O'Rourke said:


> Hi Steff - I live in Portland, Oregon, now and have lived in California, Idaho, Minnesota, and Illinois. Thank you for the welcome. I've visited London a few times and thoroughly enjoyed my time there.


Boo shame I can't say I've been to Portland in return hehe


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## Ditto (May 6, 2017)

Hello Terry and welcome to the forum.  The Rolloffs live near you.


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## sunny sanghera (May 7, 2017)

Welcome to the forum terry


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## Terry O'Rourke (Dec 26, 2022)

Returning to your forum after being absent for many years. My apologies for any lack of response to the many warm welcomes extended to me back in 2017. I'm looking for a new online home and your site seems to be the best fit for me.

I still use a carb limited way of eating to help me control my type 1 diabetes of 39 years now. My blood sugar control has been good with my time in range, 3.6-6.7, around 90%. My lows, < 3.0 , are often kept at < 0.5%. Glucose variability, as measured by standard deviation comes in at < 1.0. I wear the Dexcom G6 CGM.

I continue to use newer versions of the do-it-yourself open software, Loop, to help keep my sugars in check. This is an automated insulin dosing system comprised of an old Medtronic pump, a MM722, the Dexcom G6 CGM, my iPhone XR, and a bit of electronics to enable communication between the pump and the phone.

Unfortunately, I've also experienced some significant health setbacks. In late April of this year I survived a stroke. While I can still walk and talk, my right side is affected and I work everyday to improve my walking and keyboarding.

I hope to become more active in your community, especially in the low carb and the technology threads.


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## rebrascora (Dec 27, 2022)

Hi and welcome back.

Sorry to hear about your stroke and wish you well in working towards a full recovery. Good to have another low carb Type 1 on the forum. Out of curiosity, how low carb are you? Just wondering how you manage protein release if you are very low carb or if you stick to a min of 30g carbs per meal as suggested by Gary Schneider I believe in "Think Like A Pancreas" to prevent the complication of protein release. I tend to follow a sort of "sugar surfing" technique for protein and indeed carbs to a large extent, rather than actively carb counting and calculating insulin. ie I have a nominal amount of bolus insulin and then correct later one way or the other with a few g carbs (micro carbing) or insulin corrections but I am using MDI. I guess, being on a closed loop system yourself, the pump can take care of protein release glucose. 

Afraid I am a bit of a dinosaur when it comes to tech apart from using Libre which I love, but enjoy reading how others use it to improve their management. I look forward to reading more of your posts.


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## Terry O'Rourke (Dec 27, 2022)

rebrascora said:


> Hi and welcome back.
> 
> Sorry to hear about your stroke and wish you well in working towards a full recovery. Good to have another low carb Type 1 on the forum. Out of curiosity, how low carb are you? Just wondering how you manage protein release if you are very low carb or if you stick to a min of 30g carbs per meal as suggested by Gary Schneider I believe in "Think Like A Pancreas" to prevent the complication of protein release. I tend to follow a sort of "sugar surfing" technique for protein and indeed carbs to a large extent, rather than actively carb counting and calculating insulin. ie I have a nominal amount of bolus insulin and then correct later one way or the other with a few g carbs (micro carbing) or insulin corrections but I am using MDI. I guess, being on a closed loop system yourself, the pump can take care of protein release glucose.
> 
> Afraid I am a bit of a dinosaur when it comes to tech apart from using Libre which I love, but enjoy reading how others use it to improve their management. I look forward to reading more of your posts.


I dose my insulin using the carb, protein, and fat grams. I count 100% of the carb grams, and then add 50% of the protein grams, and 10% of the fat grams. I call the protein and fat results as "carb equivalents." I then input the total number into my Loop algorithm. The system's bolus calculator then does its magic and gives me a dose that I can agree with or not.

Prior to Loop, I used to take two boluses via my pump for every meal. I'd take the first, immediate bolus as usual based on the carbs alone. Then I'd follow that with an extended bolus covering 2-5 hours based on the protein and fat content of my meal. I adjusted the extension time by trial and error. It worked very well for me.

If I were to use MDI, I'd experiment with using two different meal-time, one rapid acting like Novorapid and one fast acting such as Regular. The Novorapid would metabolize the quicker acting carbs while the slower Regular would act on the protein and fat meal content. At least I would start the experiment at that point.

My way of eating is very low carb (< 30 grams/day, excluding correction glucose tabs), high fat, and normal protein. I don't eat any grains or starches including high starch vegetables. My system works for me and I'm definitely not here to persuade others to adopt my methods! The ultimate truth has many facets.

Sugar surfing is a very viable technique. Most of my sugar surfing tactics are performed programmatically via Loop but I'll often add a corrective dose manually. I also use the inhaled insulin, Afrezza, when appropriate.


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## Terry O'Rourke (Dec 27, 2022)

Interesting to read, @rebrascora, that you're also a statin resister. I get a lot of grief from almost all of my medical providers over this, my primary doctor being an important exception. I've done a ton of reading and watched numerous videos about this issue; one my most significant influencers is Dr. Aseem Malhotra. Pease forgive me if I've stepped into controversy. I will adjust as I learn the sensibilities of this community.


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## nonethewiser (Dec 27, 2022)

Terry O'Rourke said:


> Unfortunately, I've also experienced some significant health setbacks. In late April of this year I survived a stroke. While I can still walk and talk, my right side is affected and I work everyday to improve my walking and keyboarding.



Mother had a stroke so can't relate to difficulties your experiencing, it takes time to recover so stay strong.


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## rebrascora (Dec 27, 2022)

Really interesting that you count fat as well as protein and fat. Wow, that is some dedication! There are too many other things that impact my BG levels (my liver output is very variable as I don't have a set routine of meals or sleeping or activity), to make it worthwhile calculating protein or fat and with the small number of carbs I eat (although I am not as dedicated to low carb as yourself.... I probably average 60-70 per day.... it is just so much easier to use a very rough 1:10 ratio and then just correct a couple of hours later for protein/fat release. Yes, it is 2 injections per meal, sometimes 3, but I often only eat 2 meals a day, sometimes just one, so it's not a big deal. I also use split dose Levemir as my basal which I absolutely love and can increase or decrease my evening dose to deal with protein/fat release from my evening meal or extra activity. I average high 80s to low 90s Time in range (3.9-10) so I do pretty well with this system. 

The sugar surfing was a technique that I developed myself and then someone mentioned that it was a documented strategy. I personally hate the term "sugar surfing" as it feeds into the misinformation that diabetes is all about sugar, but obviously referencing it by that term means that people understand what I am talking about. The Libre was the game changer for me in allowing me to be more fluid and reactionary to my diabetes management than having to calculate everything precisely.

As regards statins, I am not against their use for people who need them, but what irks me is the way they are pushed upon everyone regardless of their personal circumstances. I also don't believe that the QRisk equation is accurate or useful. Personally, I feel that my QRisk is much lower than calculated and I am fitter and healthier than I was pre diagnosis 4 years ago and I manage my diabetes well and my cholesterol levels are not high, so I see no need to take a statin and would feel morally conflicted taking them when I eat so much fat and particularly saturated fat. I don't follow any particular influencer with regard to this, I just do what feels right for me and I believe the mainstream medical advice is wrong about many aspects of diet and health from my own n=1 experiments, so, I think it is entirely possible that they are also wrong about the need for statins for some people. I know that a change of diet to low carb has been hugely beneficial to my overall health and chronic conditions like migraine and joint pain stopped when I cut out carb rich foods and even my seasonal asthma no longer needs treatment and my gut health has improved dramatically, so lots of positives. It makes me wonder how many other conditions could be improved by reducing our consumption of too many carbs rather than taking tablets.


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## Terry O'Rourke (Dec 27, 2022)

I believe that each person needs to strike a balance between effort and attention expended and quality of life achieved. It looks like you have found a particularly suitable balance point for yourself. And you're certainly right about the number of other factors have an influence of blood sugar. I know if I lose sleep my blood sugar goes up the next day.

I am very comfortable with my routine and do not view it as arduous as it first may appear. Things look much different once they are in the past than they do when they loom larger in the immediate future.

You've made some outstanding gains cutting back on carbs. Good for you!


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