Please help..in NDKA!

#1

Hello,
Day 8 on keto diet. I think I’m in non-diabetic ketoacidosis! Doing keto because this diet balances macros better than Atkins induction and also allows me more carbs than Atkins induction, which sent me into ketoacidosis last year with a 6 day hospital stay and 6 weeks to full recovery and it actually changed my brain for that period of time too. I’m not crash dieting this time whatsoever and I’ve been advised I’d be fine on the keto diet but allow myself triple the amount of carbs as when I did Atkins induction just to be safe. I’m getting enough salts too. I just tested my urine for the first time this week three times in q row to be sure and it shows large ketones everytime within just a couple like 2 or 3 seconds (8-16+). I have crps so I’m not going to a hospital or getting anything poked into me unless it’s a last resort because it will trigger a flare-up (anyone who has or really knows crps understands this, even being in the stress of emergency room or pain of blood collection is a trigger). Called my doc, she said well if you’re on keto diet then you’re supposed to be in ketoacidosis so that’s normal!!! I said nooo it’s supposed to be ketosis. She insisted on ketoacidosis. (I know that’s wrong). She also couldn’t tell me at what level of ketone I should be concerned of right now because of the diet. Best she could offer me was an appointment tomorrow morning and to call the health line in the meantime for more info but they ALWAYS tell you to go to hospital so I probably won’t unless I feel really really sick.

So my question for you guys if you so kindly could help me please is: (because I have no experience with this I’m looking to learn from your experiences):
****1). Has anyone experienced this before as normal for the diet and not to worry?
****2). What if I just eat a really good meal tonight and recheck urine level in morning?- could waiting that long cause the ketoacidosis to spread into the blood? I really don’t want to go down that route again. I was put on this diet though because it worked for me 7 years ago very well and nothing else has worked in meantime and if I don’t lose 60 pounds fast then they say I’m going to be in a wheelchair for the rest of my life because of my other medical conditions that my weight is severely worsening.
****4). What should I get in my body right now or eat to lower ketone level without leaving the house to get other groceries no I don’t have Gatorade. It will be a cold day in hell before I go back to the hospital for bags of d5w again. Will a bunch of salt help? If I eat starch to lower the ketone level ONLY down to the ketosis level, will eating that starch stall my weight loss or ability to be in ketosis asap? I was going to have a steak with radishes and endive for dinner tonight but wondering what to add to lower the ketones.
**************5). Could it be possible I’m just peeing out a bunch of ketones (is that what spill ketones means?) but the large ketones aren’t actually in my body I’m just peeing them out hence the stick result of large, and maybe I’m not in ketoacidosis? Sounds crazy but that doc got me wondering things now.

I have done much research but no clear answers on these things I’m looking to learn from others experience and knowledge. Thank you so much in advance.

(Full Metal KETO AF) #2

OMG You need to find a new doctor, you know more than she does apparently. Ketoacidosis is something T1D people get. How did you get this from low carb the first time? Ketoacidosis is when sugar levels build up in the body without insulin response and it creates a dangerously high blood ph causing harmful acidic levels in the blood. I don’t understand how this could happen in a non T1 diabetic on a low carb diet with very limited levels of dietary sugars. Urine sticks are notoriously inaccurate, you might have a bad batch. Two sticks tested at the same time often don’t have the same reading. The error levels are quite well known. If you get a crazy reading test again. :face_with_monocle:

(Full Metal KETO AF) #3

https://www.empr.com/home/features/case-studies/a-rare-case-of-ketoacidosis-in-a-non-diabetic-patient-whats-the-cause/

Very rare, fasting breastfeeding women are vulnerable to non diabetic ketoacidosis.

#4

Thank you David so kindly for your informative reply. I understand what you are saying and it is very interesting, some reassuring. Last year in May I went to the hospital for pain (I was post op and had a reaction to the painkillers and antibiotics prescribed to me), but was also on Atkins induction diet at same time so they said they had to keep me until my anion group went back to normal and that my anion group indicated I was in ketoacidosis and they gave me lots of d5w in my iv. They said it was considered non diabetic starvation ketoacidosis even though I was not starving at all, they said because too little of carbs in the diet. That’s all the info I got on that part until I was discharged. I think it’s time for a new doctor…your information about insulin response got me thinking to maybe get a new doctor tomorrow who may be able to identify if there’s something underlying causing it. I’m not pregnant or diabetic nor breastfeeding but other than that it is totally relatable, that is an interesting link to get more info thank you
Thanks again David I appreciate it

(Full Metal KETO AF) #5

You are very welcome and I hope it gets sorted quickly. Stay calm and keep up your hydration levels. I wish you the best. :cowboy_hat_face:

(Carl Keller) #6

If you are not showing signs like nausea, stomach pains, shortness of breath and confusion, there’s no need to worry. :slight_smile:

(Trudy) #7

Very interesting, thank you for that information.

#8

I’m confused. You went to the hospital for something else first, or you went because you were in ketoacidosis? I’m worried about this. There are some rare disorders of ketone metabolism or hyperthyroidism that can cause non-T1D to have an acidosis problem.

Do you have any blood ketone or glucose readings?

#9

Please note:
We can’t give you medical advice. If there is any question about a serious condition, see a doctor.

(You've tried everything else; why not try bacon?) #10

Be advised that you may be one of the people for whom a ketogenic diet is contraindicated.

Euglycemic ketoacidosis is possible, but very rare. It can happen to women who fast while pregnant or nursing, and as the result of taking certain specific drugs. In most people, however, the presence of insulin in the blood is enough to keep the blood pH level properly regulated, regardless of the level of serum β-hydroxybutyrate.

If you are going by the reading on a urine strip, be advised that they are designed to warn Type I diabetics that something is wrong well in advance of catastrophe, so that the diabetic has time to get to the hospital. A better indicator would be your blood ketone reading.

There is a distinction to be made between a high ketone reading and ketoacidosis. The highest reading I’ve heard of in someone whose pH was fine was 12 mg/dL of serum β-hydroxybutyrate. This is high enough to worry many doctors, but the person in question seemed to suffer no ill effects.

If you are at all concerned, however, I would strongly advise you to consult your physician.

#11

Pretty long, but for a topic with not a ton of info on it out there, may be an interesting fyi read for some people…Thank you so much for all responses - I know it can be a difficult topic to respond to sorry and I’m not looking for medical advice was hoping maybe if others experienced same thing and what worked for them or if they heard of it happening, but if anything at least it’s interesting info for others to read too. I kind of also expected to hear this to be more normal than it seems now. But the info/thoughts I’ve received from you guys is amazing and I’m so grateful thanks!

1). It’s a urine test -
I was told that a certain number level of ketones in urine means ketoacidosis as it would in the same number level of ketones in the blood (now what exactly this number is or what that means, she couldn’t tell me). After reading some replies here I’m starting to think maybe not necessarily the case (which makes sense, I’d think it’d take time for it to turn the blood acidic but I could be wrong), also some some online research I saw shows otherwise but hey when you’re told something by a doctor you tend to want to trust it right. I haven’t gone for blood test yesterday or today yet as it is so very painful for me not only during blood collection but also afterwards it triggers nerve pain etc because of me being in a particular phase of my crps (chronic pain disorder started post op totally unrelated to the ketone issue). But if I have to get blood test done today I will of course. Blood sugar finger prick tests arent nearly as bad for me and I’m sure they’ll do one in office today, I’m going to ask if they have a spare meter and strips I can bring home for a week to monitor maybe. I have already been monitoring blood pressure (it was high before), which (just an interesting fyi) actually my bp went back down the past week while being on this diet! (For the most part, had a couple low BP’s but has only been high during periods of stress/pain now).

2). Last year at the one instance I’m talking about for May’s first hospital visit was for 10+/10 pain I was still newly post op and reacted to both the ketoralac and keflex I was prescribed. It’s just that while I was there they told me “by the way your anion group indicated you are in non diabetic ketoacidosis” asked me a bunch of questions and docs determined it was a result of the Atkins induction diet of staying at only 20g of net carbs a day (then they changed the diagnosis to non diabetic starvation ketoacidosis even though I wasn’t actually starving they said that’s just the term for it), which the Atkins induction I’d only been doing for about a week then, about same length of time as this time again but with keto and more carbs. They just gave me d5w bags and kept checking my blood for days (for the KA treatment at least). My original discharge summary from that visit stated metabolic acidosis but they changed it to non diabetic starvation ketoacidosis.
When it happened last year I was having severe symptoms but overlooked it until they discovered the ketoacidosis in hospital because I was in 10+/10 pain anyways plus reactions to meds, so prior I had unknowingly attributed the ketoacidosis symptoms to that. This time around, this year I often and sometimes felt shaky nauseous dizzy unbalanced tired sore brain fog stomach pains chest pains etc. long before I even started the keto diet now 9 days ago (most likely related to crps and other issues) so again it was easy to brush off the symptoms again until I took the strip test yesterday.
But it shouldn’t be happening this time around because
A). I at least doubled if not almost tripled my carbs this time compared to last time and ensuring electrolytes
B). I’m not diabetic pregnant breastfeeding etc
C). I’m not in 10+/10 pain this time so I can actually eat 3 meals a day on time
D). I haven’t started any new meds which could be causing a reaction in my body (compared to last time), not sure if that’s relatable though.
E). I ate some starches and more electrolytes with dinner last night and still no change in the urine strip this morning.

3). Although they’re taking about 6-8seconds to turn full colour today versus only 2-3seconds yesterday, the urine strips are showing same this morning I just tested it and it’s showing 16+ before the full 15seconds. So maybe it’s just a bad batch of strips but I still feel not so great and I have also had a weight GAIN the past few days.
I’m scheduled to see a different doctor than the one I talked to on the phone yesterday, later this morning. I’m hoping to get some better and ACCURATE information from this doctor this morning (she’s great, works in same clinic I’ve seen her before). Hopefully they’ll be able to test my urine ketones there and maybe it will be fine and determine it’s a bad batch of strips I bought. Or maybe it will still be large result and hopefully there’s something else they can do than poke me with a needle or send me to hospital. They have a bit more of a setup than the average doctors office there and 24 doctors so that’s reassuring.

Oh I have such a headache that I forgot to mention one thing until now sorry, but just mentioning in case people might find this interesting. I also started garcinia combogia on day 2 of my diet so 8 days ago, trying it for the first time as advised by a herbal medicine doctor to aid my weight loss (1500mg 60% 3X a day but I thought that’s a bit much so I only did 2x a day when I ate a meal). Although I wasn’t taking any weight loss supplements last year, I wonder if the garcinia combogia might be playing a part in the large urine ketones this time and making my urine look like I ate glow sticks for breakfast.

“If you are going by the reading on a urine strip, be advised that they are designed to warn Type I diabetics that something is wrong well in advance of catastrophe, so that the diabetic has time to get to the hospital. A better indicator would be your blood ketone reading.
There is a distinction to be made between a high ketone reading and ketoacidosis.”
Thank you Paul, this is much more reassuring to me than what I was told on the phone yesterday which confused me, and helps me understand the difference between the two better as well. I will ask the other one today about euglycemic ketoacidosis too.

Just for an interesting fyi I’ll update later after the doctors and testing etc

If anyone reading this has been in ketoacidosis and been told it’s from low carb diet, I would be so grateful to also hear from you as well please, if you wouldn’t mind sharing your experience please not as medical advice but just something to learn from or compare with as I just do not get this. I am only 30 years old and at 185 pounds between 5’1 to 5’2.

(Full Metal KETO AF) #12

I would drop the Garcinia Cambogia, your headache and nausea are listed among the side effects.

I hope you feel better soon. :cowboy_hat_face:

(Hyperbole- best thing in the universe!) #13

I’m glad you are working with your healthcare team, and that you have access to more than one doctor. Since many doctors aren’t educated about nutrition and ketosis, being educated yourself on the subject when you talk to your doctors is so important, especially since you have some specific medical needs outside of keto.

YouTube can be your enemy or your friend. I would watch (and/or rewatch) videos by Phinney, Amy Berger, Taubes, and other reputable sources like Verta and Diet Doctor. This can help you understand and communicate with your doctors.

I’m not familiar with CRPS beyond what the name implies, so ignore this if it is a wacky idea… Would getting a home ketone meter and blood glucose meter make the testing process less stressful? There is still the needle pain, but in a more comfortable, controlled environment. Just a thought.

Your situation seems unique, and I wish you the best on your health journey. If you are genuinely concerned about ketoacidosis then maybe a low-carb but not keto approach would suit your needs. Even if it turned out ketoacidosis is not a risk for you, the stress of worrying about it isn’t going to help. Increased cortisol is it’s own problem. Non-keto low carb still has a lot of benefits for your health. And if you find later that keto can work for you, then you can always do that then.

(Rebecca 🌸 Frankenfluffy) #14

Because of my T1D my doctor was very concerned about the high level of ketones in my (otherwise ‘perfect’) urine sample this morning. I pointed out that there was no glucose in it, and that I’ve eaten next to nothing since Wednesday due to not being well, and that these were fasting ketones and not in any way indicative of DKA.

Took some convincing…! #Iwon

@Cally90 I hope you start to feel better soon. My only suggestion is to keep hydrated and rested.

:slightly_smiling_face:

(You've tried everything else; why not try bacon?) #15

While it is possible that a doctor might confuse nutritional ketosis with ketoacidosis, I would be leery of assuming that’s the case. Verifying that the doctor in question is aware of the distinction, however, seems wise.

The U.K. Web site, Type I Grit, is an excellent resource for information about managing Type I diabetes with a ketogenic diet. There is a physician in the north of England, Dr. David Unwin, who has developed a training program for other doctors. His practice has saved the NHS thousands of pounds in medication costs.

(carol mclintock) #16

Dr Unwin is quite local to me and although I am outside his consulting area, he is getting a lot of positive coverage in the media, which is great to see - sorry for the digression but it’s just nice to see small changes in the way this WOE is portrayed.