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low carb/keto and insulin ratio

Hi circuspony…. Thank you for liking my post and for sharing your experience. It’s good to hear others’ experiences with low carb.

Interestingly, That happened to me as well when I was told to start upping my carbs. Very frustrating as I would end up having to do corrections doses every two hours which made my food intake vs bolus ratios levels like I’d never experienced before in my whole time of having type 1. I pre-bolussed by at least 20 minutes as well, and chose low to medium GI carbs. I had to take a huge leap of faith in the doctor to stick with it.

As you can imagine, I did a lot of googling when I was trying to get to the bottom of all of this whole thing, and I came across something specific to type 1 and low carbing and presence of ketosis related ketones called “grabbing”. After a few weeks of higher carb (100-120g per day), the spikes stopped happening. The problem worked it’s way through and my previous ratios returned.

So, in my case this is very possibly what was happening - in ketosis, my body wonders where the next easily accessible carb is coming from - I eat a modest but increased lunch portion of carb eg 40g, and straight away sugars soar even if low GI item. Apparently, the body “grabs” or snatches up the energy, not knowing when it’s next energy source will come. It was backed up by my specialist who said the body will do all sorts of funny things when it’s not getting the right levels of fuel. Going back to the original poster’s daughter’s spikes when they tried upping her carb it crossed my mind that could be happening there too.

But I’m mindful that I don’t want to tar everyone with the same brush regarding what happened to me. And you hear of lots of people doing ok on keto. (Dr Bernstein was my inspiration).

And as another afterthought and just to clarify my last post - I’m not suggesting Jon Mors daughter has an eating disorder by any means. But in my case whatever the motivation - that could be standard anorexia, atypical anorexia and obsessing with low keto to achieve better hba1c, the bottom line was that my body thought it was in starvation mode and was shutting down, and behaving in all of these erratic ways.

I love your cake comment - I’m not at that stage yet but hope to be soon!
 
Thanks very much to everybody, Paulaah in particular. We're doing ok, just frustrated with the goal posts moving all the time!

My daughter and the rest of the family are enjoying our diet well enough and don't really miss the carbs. We have low carb bread and cakes as well as the usual meat and veg. No shortage of keto or low carb recipes that's for sure.

We have increased carb intake slightly and we'll see if it makes any difference to her tummy.

Cheers
 
Paulaah said:
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.
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Hi @Paulaah, I read your post after searching the forum for advice on keytones. I have recently been diagnosed with LADA, previously thought to be type 2 and so I have been on a low carb diet for the past twenty years, reducing the carbs over the years and probably in ketosis before my recent LADA diagnosis. (3 weeks ago).

I am now on insulin and it is a whole new ball game. I too have read Dr Bernstein's book, I like the idea of small numbers, but I often slip into nutritional ketosis, even on slightly higher carb ratios than he recommends. This makes me feel really unwell, agitated, jittery, almost as if I am actually going hypo.

I am lean and probably don't have many glycogen stores. Do you think it is reasonable to thing that I am also going into starvation mode?

Like you, I am not a car person at all, so if this is the case, I am uncertain as to what to eat. I already feel like I am eating huge amounts, having upped my protein intake to compensate for the low carbs. Any advice on this?
 
Hi C@ronline. Your new diagnosis must’ve been a shock and a relief all at the same time. I hope you are getting to grips with your new insulin regime. Treating the right type of diabetes with the right medication is a huge part of the battle. You must’ve been very frustrated not being able to get results through a low carb diet when they were telling you you were type 2.

What you are saying is definitely possible and maybe something to discuss with your specialist, although I’m not sure there’s a great deal of knowledge of this very nuanced issue in the nhs which is why it took a while for me to understand what was happening. I had symptoms like weight loss, muscle wastage, no hair growing on body, head hair falling out, brain fog, mood swings, problems with my eyes like dryness, flaky nails, shivering, tummy aches, fatigue, loss of appetite.

I still do fairly low carb - 100 ish a day. 120 on a good day, and I’m feeling and looking a whole lot better. It took me a while to battle through it because over time I’d conditioned myself to think carbs were the enemy and it became second nature to avoid them altogether. Oftentimes I’d skip carb and then exercise. The sudden low and erratic blood sugars I was experiencing were as a result of having nothing stored. It became a viscous circle.

I wish you all the best, and good luck with taking charge of your LADA now you have an accurate diagnosis.
 
Paulaah said:
Hi C@ronline. Your new diagnosis must’ve been a shock and a relief all at the same time. I hope you are getting to grips with your new insulin regime. Treating the right type of diabetes with the right medication is a huge part of the battle. You must’ve been very frustrated not being able to get results through a low carb diet when they were telling you you were type 2.

What you are saying is definitely possible and maybe something to discuss with your specialist, although I’m not sure there’s a great deal of knowledge of this very nuanced issue in the nhs which is why it took a while for me to understand what was happening. I had symptoms like weight loss, muscle wastage, no hair growing on body, head hair falling out, brain fog, mood swings, problems with my eyes like dryness, flaky nails, shivering, tummy aches, fatigue, loss of appetite.

I still do fairly low carb - 100 ish a day. 120 on a good day, and I’m feeling and looking a whole lot better. It took me a while to battle through it because over time I’d conditioned myself to think carbs were the enemy and it became second nature to avoid them altogether. Oftentimes I’d skip carb and then exercise. The sudden low and erratic blood sugars I was experiencing were as a result of having nothing stored. It became a viscous circle.

I wish you all the best, and good luck with taking charge of your LADA now you have an accurate diagnosis.
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Yes, a shock and a relief and so frustrating not to be able to manage it despite my epic efforts. I think I have known for a while, on some level, that it was coming. I am glad to be on the correct medication, although it is a little terrifying.

Before my admission to hospital, I had some of the same symptoms you mentioned, such as hair loss, tummy aches, fatigue, loss of appetite, an inability to get stronger and struggling with my workouts. I was also drinking a lot. (No small surprise!!), Whilst an inpatient I started transitioning to ketosis very rapidly, which caused a kind of paralysis, I felt my body shutting down, not able to use glucose for fuel, either because I didn't have any glucose, or because I didn't have enough insulin to use what small amounts of glucose I was consuming. The cells were starving and the keytones took over. The medical and nursing staff hadn't seen this before and it was suggested that I see a psychiatrist.

I totally relate to the carbs as the enemy, I have been struggling to eat the minimum recommendation of 50g a day since my diagnosis, but the quick transitions to ketosis I have continued to experience since discharge, is just so debilitating that I am going to have to eat more carbs, and that's okay.

I think it is hard to change the mindset and habits I have formed eating very low/no carbs, it has almost become who I am. I managed to eat about 90g of carbs today and have felt well on it. I find breakfast is the hardest meal to get more carbs in.

Finding your post has made me feel like I am not on my own, or going mad. It has also helped me to decide to eat more carbs, and that I haven't failed in some way. I hope that my experience will help others, as your experience has helped me.

I am glad that you are feeling better now. Stay well and thanks again.
 
Hi C@roline,

I have to thank you and everybody else for this thread. I have been doing a lot of guess work with insulin since being diagnosed as LADA just over a year ago. I have just recently been put on bolus.

My mindset is hard to change. After 4 years of keto, low carbing and lots of fasting in many form, I now find it hard to adjust to a higher carb food intake. I worry that I am having to take more insulin because I am not doing enough to help myself. Daft, I know, but I also don’t want to put on weight so it’s a fine balance between the 2. (although I did look pretty awful at 53kg and a lot of muscle wastage)
But I also know that if I don’t have enough insulin, my whole body goes into ache mode and my muscles seem to be working twice as hard. A really horrid feeling. Going up the stairs can be painful.

This thread has opened my eyes and I now think that taking enough insulin does make me feel a whole lot better and all that struggling to be “normal“ was in vain. I just need to work out how much bolus and how much basal to take.

Still learning, still making mistakes, still in denial at times, but I’m learning as I go. Thank you.
 
Could I just ask you, C@roline ( and thank you for your lovely comments as well) ….. when you say you experienced “a kind of paralysis “ - do you mean literally? I think it’s rare and there have only been a couple of threads and they were going back a while on the forum, but at the same time I experienced something called CN6 palsy ( a paralysis of a nerve in my brain), which caused really bad debilitating double vision because one of my eyes wouldn’t/couldn’t move at all. It was either to do with the diversion of glucose away from my brain, or the “re-feeding” after being more or less in an anorexic state. The consultant couldn’t be sure. Do you mean that you had something like that? It resolved after 3 months of regular eating and matching insulin to carbs. I read up on it and took vitamin B1/Thiamine supplements to help. But I checked that with my consultant, of course.

Also - Speedbird. Thank you for your comments. It’s striking me that we were all diagnosed later in life . I was 40. Am almost 52 now. It’s possible I had LADA because my original symptoms were not sudden. I had gad antibodies but I don’t know what other tests I would’ve needed to have to categorise me as LADA . Or if they did them but didn’t go into detail with me?! The specialist nurse just called my diagnosis “weird and wonderful “. Very old school nurse……..and it didn’t feel very wonderful !!!

I know the thread has headed in a slightly different direction but I just wanted to thank you all for the discussion because it just feels like a good bit of support.
 
Hi, I’ve only just seen this post. I wonder if your daughter is converting the protein in her meals to glucose as the carb is so low? This takes much longer than the conversion of carb to glucose. If so,it can take 1.5 - 2 hours for the BG to start rising. She will need insulin to cover this but the bolus needs to be given some time after the meal. Also the dose needs to be much less than for the equivalent amount of carb - half or less. This is one of the reasons why Type 1 diabetics are often advised to avoid going very low carb. The timing and amount of insulin is tricky to calculate. I hope your clinic will be able to advise you about this.
 
Hi @Speedbird,

I really empathise. I was also fasting periodically, in various forms. I also don't want to put on any weight, we are encouraged to be a healthy weight right? I really wanted to keep all the numbers small. Low carbs, low insulin, healthy weight. Eating very low carbs is how I have managed to keep my blood sugars in check for so long.

I can't stay in ketosis though, it's too risky. I was told that if I stay in ketosis my blood will eventually become acidic, even with low blood glucose readings.

We can only do what is right for each of us as individuals. What works for one person might not work for us all. We need to stay as healthy as we can and that might just mean eating more carbs and taking more insulin. I need to reassure myself that it really is okay; I was only reading a thread the other day with so many comments from those who have had diabetes for 50 years and more. They shared photos if antiquated syringes etc.

My diabetes team have been helping me sort out the basal and bolus doses and I am booked on a carbohydrate counting course. I wonder if you can access the same kind of support?

It's certainly difficult to accept the situation as it is, maybe we just need to have more love and compassion for ourselves right now. I wish you all the best and that you find the support you need.
 
Hi Paulaah, yes, literally paralysed. It happens all of a sudden, say over the course of 30 minutes to an hour. It is a horrible experience really, to feel your body shutting down, my breathing slows down, I can hardly string a sentence together and can't move any of my limbs.

Having read these posts and with time to reflect, I believe that before my hospitalisation I was in starvation mode and running entirely off keytones. It became more and more difficult to manage, as my insulin production reduced. Resulting in my admission to hospital.

Hospital food being what it is, I was still starving in hospital, I actually lost 2 kilos the week I spent there.

Whilst in hospital keytones were treated, so now no fuel for the cells, as I was still eating low carbs, no glucose for cells, cells become starved, I experienced this kind of 'paralysis', keytones come to the rescue and start creeping up, I then feel better, even though keytones are elevated.

Since I have come home, I often start to experience the cell starvation, keytones rising cycle again. This is where I start becoming hot and jittery, but I have a little fuel now, so don't go completely into keytosis. I have not really known how to manage this, but I am often taking low carb small snacks, which helps me get to my next meal, just about.

I have also realised through reading your post, that I am also experiencing this cell starved keytones cycle after exercise and that it's maybe best to leave that until I have built some reserves.

It's certainly plausible that this starvation of the cells is what caused the experience you mentioned too?

I know that there are two other antibody tests for LADA, but my Consultant advised me that they aren't always necessary, as diagnosis also considers the presentation of the patient.

All the information you have given has been really helpful and I am grateful to you and everyone else for sharing.

Thank you.
 
Hi Jon Mors, I have been thinking about your situation a lot recently. It is a shame that there is little research into the keto diet for type one and insulin users in general. I know that prior to being hospitalised I felt really great on very low carbs, I am almost certain now that I was in ketosis. I was able to fuel all my exercise, (I teach group fitness, so no small thing), and keep my BM's in check. In the absence of sufficient insulin I obviously ran into problems. Even now, the ketones I have are nutritional ketones, it's just the transitional from carb to ketones as a fuel source that is a little harrowing.

I do wonder what effect the keto diet would have on me now, as my insulin isn't produced by a perfectly efficient pancreas, responding in real time to whatever I put in, as apose to someone whose pancreas does work correctly. Not sure, but this might explain the difference between your two daughters?

What I have learned is that it is important to track all macros, not just the carbs. So if your a fan of Bernstein, then you track protein, if low carb/keto track fat, as well as the carbs. I have always been lazer focused on carbs and have neglected the other macros, to my own detriment I think.

I mentioned in another reply on this thread that I was told by my consultant that my blood would eventually become acidic if I remained in nutritional ketosis for too long, even with low BM's. I am not certain if there is any research into this, but it is obviously of concern, if it is accurate.

Although this normally happens in the morning, the liver can dump glycogen into the blood if it thinks that it needs to, (dawn phenomenon), it seems extremely unlikely, but I wondering if this is what is happening to your daughter with the evening BM's? I am, by no means any expert, and am open to correction from other forum members, but might be worth asking your health care team if this is a possibility?

I hope all the replies here have been helpful in some way. Navigating this illness is a minefield, so we need all the support and help we can get. I hope that you find a way forward that works for your daughter. Best wishes, stay well.
 
Paulaah said:
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.
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thank you so much for sharing your experience..it is the first time I read sth that explains the shocking realisation that KETO doesn mean at all lower insulin for Diabetics 1. I ve been following keto and fastin (16/8) for almost two months now aiming at weight loss and detoxification as ai was recently diagnosed with blood pressure as well (10 years now diabetic, now 47). I found that fat meals lead to high blood sugars and found out that I needed more insulin to metabolise any glycose generated by evyrthing but no carbs. It seems strange as you might think that you would nod need any insulin for no carbs, right? I am afraid it is not the case and I stopped eating fat besides some nuts and some dairy. I dont know if I am in ketosis now and I continue the keto/ low carb minimizing the animal fat and focusing on healthy fats like nuts, avocado, fish etc ...Additionally, after exercise, blood sugars hit high (you would imagine otherwise, eh?) anyway, I dont know how long I will keep doing that along with fasting, as I have now grown a phobia concerning carbs...
 
Hi, we've increased the carb intake a little bit over the last few weeks, and also increased the basal. Since then, her sugar level had been fairly stable, but recently her carb ratio changed again (aargh!). Maybe to do with her growth hormones. Her sugar level rises in the evening, which typically is about at 10pm. Sometimes it rises even above 7. We sometimes have to give her a correction at night, but for some reason it doesn't seem to work very well at night time. 1 unit of insulin reduces blood sugar about 2mmol but if I give 1 or 2 units of correction at night, it just doesn't seem to work at all. Even if we double the dosage it doesn't seem to work very well. Her blood sugar level stays almost unchanged. We have kind of stopped giving any corrections as it doesn't make any difference. However, I am wondering why it doesn't work at night. We did ask the question to our pediatrician but didn't get an answer. Anybody have any idea what could be causing this insulin insensitivity at night time? Insulin works well during the day.

Jon
 
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