Problem with high ketones

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Nidge76

Nidge76

Active Member
Relationship to Diabetes
Type 2
I'm at a loss at the moment.

I was diagnosed type 2 in February 2022 with a hba1c of 98.

I had a DKA 2 days later and ended up in A&E.

Roll on 18 months, I've taken up running and lost 3 stone. I'm off meds and my last hba1c was 46.

The trouble is I've had 2 further cases of highish ketones, the latest earlier this week.

I don't understand why this keeps happening. I keep reading it's more common in type 1 or if sugars are not under control.

I do eat fairly low carb as I'm not on meds, could this be causingy.ketones to raise?
 
If you are following low carb, depending on how low then dietary ketones are very possible. People who follow a Keto diet are trying to achieve that. That is different to ketones which result from very high blood glucose.
However given your previous experience it would be worth speaking to your GP.
How are you testing for ketones and how high are they.
 
Inka said:
Hi @Nidge76 I remember you. I thought you might be Type 1/LADA. Did you ever have any tests to check for Type 1 antibodies?
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Thank you for your reply. I haven't been on here for a while as I felt like I was getting everything under control and needed a break from diabetes info overload.

When I had my first DKA the hospital team did an extra test to confirm my type and it was type 2 all though I've never actually seen the results. I'm starting to wonder though.
 
It would be interesting to know what test they did and what your result was. Usually the Type 1 antibodies and C Peptide are done.

How high are your ketones? Are you urine testing them or fingerpricking to test them?
 
I'm just looking through medical history now. So I'll look for anything that mentions type 1 antibodies and C Peptide results.

I'm finger pricking for ketones. They hit 2 on Wednesday evening but have gone down to 0.1 now
 
I just found this in my medical history:

'had antibody testing gad LOW < 8 '

I think this means I'm likely to be type 2?
 
Leadinglights said:
If you are following low carb, depending on how low then dietary ketones are very possible. People who follow a Keto diet are trying to achieve that. That is different to ketones which result from very high blood glucose.
However given your previous experience it would be worth speaking to your GP.
How are you testing for ketones and how high are they.
Click to expand...
Thank you for your reply.

I'm testing ketones using a finger prick test. I was violently sick this week and it was a 2. Thankfully it went down again. I think I need to speak to my GP again as I feel like I'm doing a lot of things right in terms of weight loss, exercise and overall diet, but something isn't right.
 
Are you doing blood glucose tests as well as testing for ketones? Just wondering if things have changed since your HbA1c in August.
If you are testing BG, what sort of readings are you getting and when do you test?
 
rebrascora said:
Are you doing blood glucose tests as well as testing for ketones? Just wondering if things have changed since your HbA1c in August.
If you are testing BG, what sort of readings are you getting and when do you test?
Click to expand...
I've only just started again this week because of it and they have been around 8 or just under. Usually this is after food. I've been so confused this week I can't be sure. Lol
 
A ketone level of 2 is perfectly normal on very low carb/keto and would come with normal blood glucose level. If they are both raised, particularly with a history then I’d seek some medical guidance. Also if you are on any flozin medications it’s advised not to do anything more than moderate low carb (130g minimum) as this medication can result on DKA without the typical warnings of high blood glucose when combined with very low carb.

And a lack of antibodies does completely rule out type 1, although the presence of them does make it almost certain particularly if diabetes itself is confirmed. And they don’t always test for all antiboldies, just the most common type. C peptide should be done alongside it too.
 
I'm not on any medication currently.
I'm not on a keto diet, I would say fairly low carb (I'm not sure of the figures) I thought ketone levels should only be 0.1 or 0.2 and anything above 1.6 you were at risk of a DKA according to the NHS website?

As far as I'm aware I haven't had a C Peptide test.
 
Yes, that’s what the NHS website says @Nidge76 As you’ve already had DKA, you’re being very sensible to check and to go by that guidance.

Could you have been ill? There are some nasty viruses around at the moment.

Edited to add that I’m sure I read a percentage of people with LADA don’t have antibodies.
 
I was so sick this week showing a lot of the signs for high ketones and it was 2 when I measured. Prior to that I felt just fine. That's what is so infuriating. I run regularly, I'm a good weight, hba1c is coming down yet this keeps knocking me back.

They did query LADA at 1 point but looking back I never had the C Peptide test. I probably need to speak to my GP again. Thanks for your replies
 
Nidge76 said:
I'm not on any medication currently.
I'm not on a keto diet, I would say fairly low carb (I'm not sure of the figures) I thought ketone levels should only be 0.1 or 0.2 and anything above 1.6 you were at risk of a DKA according to the NHS website?

As far as I'm aware I haven't had a C Peptide test.
Click to expand...

it might depend on the level of carbs you’re actually on. You don’t need to be as low as 20g a day to hit nutritional ketosis for a lot of people. That’s just the guaranteed level. I for example get there about 40g initially and once there for a while can dip in and out at around 50g. Others do similar.

I agree that the nhs website is more cautious than the chart below (Please note there are some near invisible decimal,points in there!). Partly because it’s aimed at type 1 where it’s substantially more likely than type 2 not on medication and using a very low carb diet.

However with your history and less than certain diagnosis I’d err on the side of caution and keep a close eye one both ketones and glucose and any doubt or worry seek help, just in case
 

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Thank you for your response. Seeing my ketones rise like that and feeling as sick and exhausted as I currently do I think I need to seek further advice from my GP. Thanks again.
 
Nidge76 said:
I was so sick this week showing a lot of the signs for high ketones and it was 2 when I measured. Prior to that I felt just fine. That's what is so infuriating. I run regularly, I'm a good weight, hba1c is coming down yet this keeps knocking me back.

They did query LADA at 1 point but looking back I never had the C Peptide test. I probably need to speak to my GP again. Thanks for your replies
Click to expand...

Very sensible. I hope you can get a C Peptide test done. It should give you more information. Is there anyone else in your close family with diabetes?
 
I think I'm an odd case but I'm sure not the only one. No history in the family of diabetes. The only thing is my Dad has an autoimmune disease, so don't know if that makes a difference. Although I've lost weight I wasn't obese. I guess no all diabetics are the same though.

I'll speak to the GP and ask about the Peptide test and see what they say.
 
Nidge76 said:
I'm just looking through medical history now. So I'll look for anything that mentions type 1 antibodies and C Peptide results.

I'm finger pricking for ketones. They hit 2 on Wednesday evening but have gone down to 0.1 now
Click to expand...
When you have higher ketones, what are your blood sugars at the time? Greatest concerns are where elevated ketones are accompanies by high blood sugars.
 
That’s not correct. It’s the high ketones that are the danger. It’s possible to get ketoacidosis with normal blood sugar - euglycaemic ketoacidosis. Here’s one of many articles:

edm.bioscientifica.com

Euglycemic diabetic ketoacidosis: a diagnostic and therapeutic dilemma

Summary Euglycemic diabetic ketoacidosis (EDKA) is a clinical triad comprising increased anion gap metabolic acidosis, ketonemia or ketonuria and normal blood glucose levels <200 mg/dL. This condition is a diagnostic challenge as euglycemia masquerades the underlying diabetic ketoacidosis. Thus...
edm.bioscientifica.com edm.bioscientifica.com

People without diabetes can also get ketoacidosis on rare occasions and their blood sugar is normal. As ketoacidosis can sometimes be connected to certain medication that a number of people with diabetes are on, saying that it’s somehow ok just because your blood sugar is normal is potentially dangerous.

High ketones are a concern whatever one’s blood sugar.
 
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