low carb/keto and insulin ratio

How high are your daughter's levels and have you checked her ketones?
High blood sugar with ketones could risk DKA of which stomach pain is a symptom.
I appreciate a keto diet may produce ketones which makes DKA more challenging to diagnose.
I found I could not follow a very low carb diet as the insulin to protein ratio was too complex (in the absence of carbs, our BB ody breaks down protein to glucose). It is also unnecessary for Type 1 if you get the insulin dose correct.

Have you replaced her insulin pens? It could be the pens or insulin are defective.

How old is your daughter? Hormones can cause very erratic insulin requirements at certain times of the month.

Agree with everything that’s just been said…. However, another angle and pause for thought based on my own experience of low carbing for a sustained amount of time…..

Slim type 1, great control for 11 years, insulin sensitive - under 20 units of bg daily and consistently 1:20 ratio for food. I focussed in on low carbing because of reading dr Bernstein book and I wanted even better results. I’d say “almost keto” approach. Ate big portions of everything that was good for me, just extremely limited carb. All went great to start with. Hba1c decreased even lower. Then I fairly suddenly needed loads more fast acting which was very difficult to get my head round after previous trusted ratios. Eg 1:7. I knew something wasn’t right because I wasn’t ill or in my honeymoon phase etc.

That developed further into erratic and sudden hypos. Cgm straight down arrows which took me ages to turn around. (Testing blood alongside as I know cgm delay problem). Other side effects like stomach pain, diarrhoea, muscle wastage, weight loss, lack of body hair, shivering.

Developed ketones of between 0.5 - 1.5 daily even though I was in range (I’d check your daughters ketones with blood strips to doubly make sure).

My own gp and diabetes team couldn’t throw any light. So I paid to go private and got this diagnosis…

He said my body was in starvation mode and the low carbing had disrupted my Krebs cycle. My reserves in my body (stored glycogen) were depleted, and the insulin wasn’t working properly because it had nothing to push back on. He told me to aim for 150g carb per day which is impossible for me (as I’m not a carb fan, really).

But I aimed for 100-120 per day. And slowly but surely everything has resolved and gone back to how it was.

I’ve been reading your thread and wondering whether my experience might help, even if only to rule it out. I’d definitely test for ketones at spot times during the day, if only to rule it out. Anything over 0.5 , as you know, is irregular. Especially if your daughter is active so will be drawing on stores for muscle replenishment. I, myself was walking a lot, and this compounded the problem. He told me to not exercise until everything had resolved.

I know everything sounds totally counterintuitive to what we think, but this diagnosis has literally turned my life around. (By the way, he was an NHS man, just was practicing privately like they do).

Best wishes to you and your daughter for getting to the bottom of it.

Jon Mors said:

Thanks both for taking the time to provide this detailed advice/input. Food for thought.

With the higher carb in your diet did you manage to keep your blood sugars within 4-7 or did they shoot up after the meal?

We did give her a diet with about 100g carb per day for the first couple of months, but blood sugar jumped up to about 15mmol after eating (even though taking the correct amount of insulin). She is 'almost keto' and it is helping keep the sugar level stable and she's happy with the diet.

We have increased basal by about 30% and it seems to be helping a bit (with reducing bolus requirement - tummy ache remains).

Unfortunately NHS team aren't very helpful.

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If it's jumping up after eating then there's a couple of things to do. If a meal is a bit more carb heavy then I take my insulin earlier - say 20 mins before eating (providing I'm not too low).

I'd also query if she's really taking the right amount of insulin for that particular meal if it's causing a big rise. Remember not all carbs are created equal. Rice is straightforward for me but the same grammes of pasta has a totally different effect.

How many hours after the meal are you checking the 4-7 zone? Keto diet and a tummy ache would concern me. Do you have ketone testing strips?

In answer to your question- I’ve never been able to stay all the time between 4 and 7. I pre-bolus by 20 minutes and when it’s working nicely I rise to about 11.7 and then come back into range throughout the life cycle of the bolus. It’s the best I can manage, for me - and 100% better than the previous spikes and devastatingly scary crashes I was having.

Agree that the ketones need checking, preferably with a blood testing strip. I’ve read up on this a lot. As the starvation ketones develop, they cease being picked up on urine strips because the chemical make up changes. There’s only a small window where starvation ketones will be picked up on a urine strip.

Your last point @Jon Mors would point to a clue for me-her tummy pain started once she was diagnosed with type 1- I would be questioning how your daughter feels about this whammy of a diagnosis and new way of life at the age of 10. It is just the age (I worked with 10 year olds for years) when being the same as your peers and conforming with everyone else becomes all the rage. It is also very easy to become obsessed with sugar levels and rises. I have to give myself a talking to every now and then and remind myself the occasional high level isn’t going to hurt me. In a perfect world we would keep in range all the time by constant diligence and diet. However this dratted disease continually throws us curve balls that are harder to control. In the best possible way can I just say to make sure your own feelings about levels and health results are not transferring to your daughter. Many Type 1s have lived with it for years without the technology we have today and are still here thriving.

@jonmors - sorry I can’t figure out how to highlight the bit I’m about to reply to…. Your comment about “1”. Do you mean they were testing at 0.1 or 1.0? It would also be worth bearing in mind when you tested - if you tested a couple of hours after a meal and mid cycle of her last bolus, and she had ketones, I’d be concerned if that was my reading, because then on the way up to her next meal I would think they would rise.

Hope that makes sense- so I could be for example 0.7 before a meal and 0.3 after a meal and that would be ok, but if I was still over 0.5 after a meal and not due another meal until say 6.30 pm, mine could rise to 1.5. That would make me feel unwell and shivery etc. That’s when my new consultant twigged what was happening.
1.5 in my case not good. Apart from that telling me I’m in constant ketosis, any sort of infection or illness which could come along and raise ketones, and I’d be heading towards ketoacidosis quicker.

It must be very hard for you and your family, and it’s clear you are doing everything you can to avoid future complications. I’d also check out the link that’s been added on an earlier thread this morning to do with a radio presenter’s type 1 son, which is an eye opener.

Best wishes

EllieM said:

I'm pretty sure it is this one

Mental health vs physical health

https://www.dailymail.co.uk/health/article-11848095/Justin-Webbs-son-Sam-speaks-battles-type-1-diabetes.html There's been quite a few posts on here recently which has had me thinking about whether we sometimes try and put our physical health (blood sugar's in range) above our mental health...

www.diabetes.co.uk

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Good article.

Yes - that is the article. I’m not very good at doing links and highlighting! I was so absorbed by it when I read it, because in black and white that is really what happened to me. I sort of sleep walked into an eating disorder by doing an almost keto diet, which counter-intuitively mucked up the whole of my blood sugar control. And it’s taken me over a year to sort it out.

I’m not being so bold as to say that low carb/ almost keto does not work for type 1s. I’m just saying that from my own experience it certainly didn’t work for me. My body was not thriving and was in actual fact shutting down.

It took so long to diagnose because I was in normal range but accidentally discovered I had ketones when all the other symptoms started and they did include gastrointestinal problems. The usual medics in my world were not alert to the possibility that even though I wasn’t anywhere near DKA, the constantly elevated ketones were a clue to the fact that all was not well with my body. So I could be regularly up at 0.7 to 1.5 - alongside feeling unwell, but sometimes with normal blood sugars.

The situation got so bad and unliveable-with that I sought a second opinion and it took someone with a fresh pair of eyes to put the full picture together. Things by then had degenerated into constantly high blood sugars, (so I took higher ratios and more background ) - to then dropping scarily and so quickly into low, as dramatically as the young man described. Hence the specialist saying my body didn’t know what to do with either food or insulin.

So going back to the very original post, I just felt a duty to share my experience because I agree it sounds bonkers to think that what I thought I was doing to improve my health, actually had the opposite effect.

But I totally accept that it’s a choice and everyone is different.

@Paulaah I liked your post in sympathy rather than liking your health issues, but I found my body needed at least 100g of carbs a day. Any less and I was getting huge BG spikes almost like my body was expecting me to inject a certain amount of insulin irrespective of food intake.

The trick for me was finding carbs that my body found easier to process and didn't lead to huge spikes. Time of day has also proved critical.

I still have cake - life is for living after all - but nowadays I try to have it in moderation and when I know I'll be on the move.