What are your ketone levels for low carbers out there?

[craig81]

Hey the good people of the forum,

This may be a bit of ramble. Please be patient....but curious for your thoughts.

I've been following a low carb/ketogenic paleo style diet for about 18 months now. I feel good eating this way, and my mood, temperament, and concentration levels are all better now that I've avoided a lot of the swings in blood sugar that come with a more typical western diet. My Hba1c has improved dramatically but there is still room for improvement.

Anyway, I am due to start on the Medtronic insulin pump on Tuesday and have been speaking with the dietician who will be my professional involved in my care during the induction period. My opinion of her is that she is a very warm, inquisitive and caring professional. However, I was completely honest with my way of eating, and we had a bit of back and forward discussion on a few things with some disagreements. She obviously has concerns around my disclosure that it is likely my body produces ketones in the absence of dietary carbohydrate. She explained that part of the day of the insulin pump going live is testing for ketones before you are allowed to leave the hospital. In any case, I've just been provided with ketone sticks for my meter, having not had any in years. I've been type 1 since the age of 12, and have never really tested for ketones as I've always been pretty ritualistic with always taking my background insulin and having a level of circulating insulin to prevent DKA from happening. Touch wood that DKA never happens (touches head).

I'm currently getting back into running. And because I now have the ketone strips I now have the option of testing my ketone levels to see what they are. Today, after lunch, I ran for 8 miles. I never took anything on board during the run. I am by no means very good at running but part of my reason for eating very low carb is so that I can train my body to rely on fat rather than glucose and so avoid my blood sugars dropping. And it works. I also like the idea of being able to build up to going out running for a couple of hours or more and not having to think about diabetes too much and having to take in gels or glucose tablets. For me running is a time for thinking and a bit therapeutic in a way if that makes sense. Call it escapism from reality if you like.

So when I finished my run and tested by blood glucose level it was 6.6, having been 7.5 before I left. Very happy with that. I then went to test my ketone levels and they were...3.3! I'm not overly concerned at that, because my blood sugars are in range and I have a level of insulin circulating in my body, but I am worried about the reaction of the medical staff when we test for ketone levels on the day I go live with insulin on the pump. It is likely they will be in a similar range.

Are there any other type 1s who have went on the insulin pump that have faced a similar situation? I have no desire to change my eating habits - even though the dietician requested that I give some thought to doing so while I begin setting up with the pump. It's not by any means an unreasonable request but at this stage in my life I'm very comfortable with my nutrition and the energy levels it provides. So I'm inclined to just keep doing what I'm doing plus I might as well be realistic and honest in my approach. However, I now have this foolish nagging thought at the back of my mind that they won't let me out of the hospital on Tuesday with ketone levels that high despite decent blood glucose levels. And will they allow me to keep the pump? I fear I'm going to be bombarded with questions on Tuesday and that rather than it being a positive experience I may be on the defensive for large chunks of the day. Anxiety and paranoia I hope. I guess we'll see.

All a bit of a rant I know. But it turns out that ranting is almost as therapeutic as running. Almost. Anyone with a similar experience or advice please jump in. Cheers.

 

[Mrs Vimes]

I low carb trying to sort out DP. I ended up with a pump to deal with it. Still low carb. Trialled a CGM for a week. Attended a follow up pump training session. I run between 1.5 and 4 for ketones.
The CGM download showed the nurse that my blood sugars were 100% within the target range for that week. She said she'd never seen such good results.
I have never knowingly had DKA as when I got the pump that was the first time I checked for ketones out of interest. Got such a fright at first but then realised that I had no systems as bloods were normal.
My DN said they were obviously starvation ketones not DKA ketones.
Good luck getting the pump. I now go the gym because I can change the background. Best thing that happened to me. I still low carb. I very rarely need to eat or drink to fuel up for the exercise. (I do test a lot when I train.)



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[craig81]

Hey Mrs Vimes. Thanks for your input. Were there any concerns raised by your DN? And was she accepting of how you chose to eat? Or was her overriding concern on blood sugars?

Glad to hear the pump has been such a positive experience. Being able to adjust for training will be amazing. I know it will be tough getting used to the pump and the settings but being able to adjust background rates for exercise is going to be fantastic. MDI really is limiting in that respect. It's also good to know that you can now go to the gym. I absolutely hate when you start exercising, really get into it, then you are hit with a low. Just ruins the whole experience. Has your DP been resolved? That does my nut in. Waking up first thing, testing first thing, and then seeing that lovely elevated number. Great way to start the day. I'm really looking forward to starting it differently

 

[Mrs Vimes]

DP more under control. Tbh I worked hard on MDI to keep hba1c at 6.5% - lchf best decision ever. DN has not made any noises that disapprove but none that approve. Though the others on my course were hitting 18 to mid 20s blood sugars were I was stressing over highs of 9-12 with DP. She lives my control and knows about my ketones.
Pump has made it easier and I can actually use the rise ( under control) to do cardio to lower then weights to raise sugars. Finishing with easy cardio to reduce sugars. Have basal on pump increased from 10% upto 60% (personal trainer session that kills me) for the sessions then back yo normal afterwards.
Sometimes use temp basal to deal with lchf lunch after training as a full hut boys too much.


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[Mrs Vimes]

My DP starts as I get in the shower mostly so bolus before unhooking then increase basal when I get back on. Much easier to control.


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[jack412]

I'm a dieting T2 and I haven't done it for a while. This post prompted me to get the keto diasticks out, result 1.5

 

[Spiker]

I am early into my latest run of low carbing and my ketones are 1.0 - 1.5 mmol/L. I'm not sure I'm fully in ketosis yet.

This is going to be tricky but you may have to educate your diabetes health care team on the difference between nutritional ketosis and DKA. DKA only happens if you have insufficient insulin. If you have circulating insulin in the blood then ketone products in the blood are continually cleared by the insulin. DKA levels of ketones would be at least 5 times the level you are running.

I would definitely not go onto higher carbs when going on to a pump. Even if that wasn't a big change of routine for you, more carbs will make it harder to manage BG and will make your transition to a pump more difficult. The dietician wants you to be in her comfort zone, which is a high carb diet, but you need to be in your own comfort zone when getting to grips with the pump.

Having said this the emphasis on ketone testing that I got in my pump training was not "show low ketones or you can't have a pump". The message was "before you walk out of here wearing a pump, make sure you know how to recognise and handle DKA". DKA is an increased risk on a pump. So I would focus on convincing them that you will take this risk seriously and know how to deal with it.

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[Alanp35]

Many thanks folks for the prompt about ketones. I must admit I hadn't tested since I stopped getting warnings on my meter ( 4months now) as my BG levels are now much lower. I have gradually been reducing carbs and am now at approx 100 per day and ketones tested over the past couple of days have shown "trace", so no alarms there. Higher ketones are another warning for us. Will be monitoring mine more regularly.



Late onset T1, several auto immune issues.
Humalogmix25 twice a day, Methotrexate 25mg once per week, FolicAcid 5mg once per week, prednisolone 5mg daily, Allopurinol 300mg, Calcichew-D3 800iu, Levothyroxine 50mcg, Atenolol 50mg, Losarten 100mg, Aspirin 75mg, Nicorandil 20mg, Nitrolingual GTN spray, Metformin 2000mg, Allimemazine 10mg, Lanzoprazole 30mg, Atorvastatin 20mg, Co Codamol 8/500mg, Depo Medrone (Methylprednisolone) or double Prednisolone for 7 days in case of RA flare.

 

[Mrs Vimes]

I wouldn't bother monitoring ketones unless you know you are running high or you want to know you are in ketosis - just my own opinion though. As I said I had never ever tested as I had no way to do it in 20 something years.
I only tested as I was given a new meter alongside the pump - new toy. Nearly died then realised it was my diet not the blood sugars. Got to admit though the 4 made me feel a bit unsettled.


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[phoenix]

Sorry, I don't agree with saying that ketones in DKA are necessarily 3x what you may find on your readings, as here:
A blood ketone level of >3.0 mmol/l was considered as frank ketoacidosis http://www.endocrine-abstracts.org/ea/0023/ea0023oc5.5.htmIt's
It's the first one I found, I have read other similar figures when I've looked this up before. I don't believe the figures that I have read on some low carb blogs.

If a pump fails overnight some people, particularly younger people can rapidly develop ketoacidosis (indeed it's one of the reasons that pumps had a bad reputation in the early days, they failed and adolescents who often need more insulin, ended up with DKA after 5 hours without insulin) That's why the protocol at my hospital is to check for ketones each morning, just in case of pump failure .I don't do this but have only developed ketones when my site became dislodged during a long run. As a very old onset T1, I probably have a bit more of my own insulin than others and I think that could be important.

It's also not true that DKA is always associated with high glucose levels : google or look up on here euglycaemic or normoglycaemic DKA
. If you have an infection or If you are vomiting or really starving ( very low protein) then you may need far more insulin to stop these ketones growing rapidly. (children in developing countries can be diagnosed in DKA with hypoglycaemic glucose levels)
I don't know if I have a conclusion but I certainly think that those of you who are T1 and have ketones on a regular basis need to be very aware from frequent testing about what is going on in your own bodies (ie record and pattern keeping) . If I'm ill, I essentially start from no ketones ,if you already have them then you need to be aware of how much and how quickly they rise

 

[Mrs Vimes]

If my blood sugars are in the normal range 4-8 then I don't test or worry about ketones if I feel well. I test blood sugars as soon as I wake up and probably obsessively throughout the day.
Even if I was sick and ran higher than normal going back, I never tested for ketones just bolused like mad to keep sugars normal.
I have been very lucky and never knowingly had DKA or been in hospital because of diabetes (touches wood at least five times).
So will I test every day for ketones that I know are probably already there? Not unless I feel ill.


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[Spiker]

I would test ketones if I had any, even 1, of the DKA symptoms, or otherwise felt ill, or had unexpected insulin resistance, or had high BG (over 13).

Just as there can be hypoglycaemic DKA, there can be high ketones without DKA. High ketones alone are not sufficient for a diagnosis of DKA.

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[Riri]

I'm very confused with the above. I thought that sugars over 13 and ketones over 0.6 were a cause for concern and some action. Ketones over 1.6 and you call A&E. I always check for ketones if sugars are over 13 and I also check for ketones if I'm feeling unwell even if sugars are within range, I guess I'm a fairly low carber (100g or less per day) but I never show ketones on my meter if I'm well.

 

[Spiker]

I thought that sugars over 13 and ketones over 0.6 were a cause for concern and some action.

Definitely. Cause for concern and action, risk of DKA, but not necessarily meaning you have DKA.

 

[Spiker]

Ketones over 1.6 and you call A&E.

We need to be careful about units. Yes at 1.6 g/L you would want an ambulance. 1.6 g/L of ketones = 16 mmol/L of ketones. That's ++++, the highest reading on a urine ketone strip. 3-4 mmol/L ketones, as reported above by low carbers, is weak to medium ketones.

 

[Riri]

I only know the reading on my ketone machine. I'm sorry I don't know the units but I know that if over 1.6 on that device I need to take action quick.

 

[ElyDave]

Definitely. Cause for concern and action, risk of DKA, but not necessarily meaning you have DKA.

Not necessarily, I've ended up with BG>13 with a reduced bolus in prep for a long run. The meter starts shouting "Check Ketones", but as I know I'll be down below 5mmol/l in 5km of running, no need.

Very interested that some people have managed endurance sports in ketosis, as I thought it was more suited to strenght athletes. I'll find out soon though as the next threebooks on my reading list are
- Brewing Britain by Andy Hamilton (current read)
- Pumping Insulin
- the Art and Science of Low Carb Performance by Phinney and Volek

 

[Mrs Vimes]

Spiker cheers for the clarification of units.


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[oldgreymare]

Caught out recently with throat / chest infection and not raising basal fast enough = severe DKA with very low blood pH and plasma ketones around 5 mmol/l...after resuscitation session at A&E eventually back to around 1 mmol/l - doctors still not entirely happy but allowed me to discharge as BG OK. But I had extreme DKA symptoms on admittance - excessive deep breathing, vomiting and dehydration (couldn't speak as mouth too dry).

At home I only have access to urine ketone strips - always recording mild to moderate ketones ( can be up to 3-4 mmol/l , but if BG Ok and feeling hydrated and otherwise fine I tend to ignore as I am mostly very low carb). So agree with others above that elevated ketones are a signal for extra diligence in monitoring, but need to look out for and be knowledgeable about other DKA symptoms as well.

 

[Spiker]

I checked today (don't check every day) and I'm up to 4 mmol/L now, aka ++ or Medium. What is amazing is that I don't feel like I'm in ketosis and I didn't feel like I went through keto-adaptation: no 'Atkins flu', killer headaches, killer cravings, etc. At worst I had some mild headaches that resolved in half an hour with a big glass of water. And yet I feel no hunger, no urge to eat, and feel greater energy and good mood. This is the easiest low carb ever for me. The others were a mission at the beginning, this isn't. So if I can't stick to this, I am officially an idiot.

Maybe the main differences in my approach this time are plenty of fat; water and rooibos tea rather than diet coke for hydration (!), so basically no caffeine; and being much more careful and moderate in treating the hypos. Which have all been nice slow gentle easy hypos.

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