Type 2 review..advice on ketones

[Becky72]

Hi all. My first post, although I have been lurking for some time learning so much from you all, so thank you. Diagnosed 3 years ago with a scary hba1c of 80. GP started me on metformin straight away along with the usual 'eatwell' nutritional advice and I've very much been up and down with my hba1c since, while I've battled some difficult mental health issues. A few months ago I finally took responsibility for my own health and embraced low carb high fat and intermittent fasting after reading of everyone's success on this forum. Its taken a while to beat my carb craving and find a new way of eating but as of my last blood test 10 days ago my hba1c is now 43. Saw a different GP to normal who gave me a gold star and asked how. I said I've really cut down on carbs, more exercise and test, test, test. I asked if any chance of testing materials on prescription (rather than drugs) and she promised to look into it. They're keeping a close eye on my progress and I have another DN review this week which I have been told is to assess me and make a decision about the testing materials. By the way I've cut out my evening metformin so am only on 500mg a day (without GP's knowledge I might add) as I'm fed up with the stomach issues. And anyway, I don't feel I need it now. My question today is about the DN review. The nurse is nice enough but has always been of the 'type 2 is progressive' way of thinking. Never discussed low carb with her so don't know her view on it. I am obviously very keen to get testing materials on prescription and appreciate how lucky I will be if this is the case. I've purchased some urine testers for ketones and they reveal the darkest colour, showing I am in ketosis. I know that the DN has always checked for ketones in my urine at a review and I have not even known what this meant until recently. I'm looking for tips on how to handle the review as according to my research ketones are only dangerous if accompanied by high readings. Is this correct? My readings are now usually around 5 or 6 so obviously I have things under control. Has anyone else on low carb had ketones detected at a review and was it an issue? I'm still so new to understanding it all so any advice very welcome. thanks

 

[bulkbiker]

according to my research ketones are only dangerous if accompanied by high readings.

You are quite correct.. although so far as I am aware I have never been tested for ketones at the doctors but if you are following a pretty low carb diet you should be in ketosis anyway. If your blood sugars are in the range you mention then ketones are in no way worrying.. if the nurse says any different then I'm afraid they are simply wrong. If they have a blood ketone meter it may be worth asking them to test that as the pee sticks are notoriously inaccurate..

 

[Guzzler]

What a smashing job youve done, very well done! Fingers crossed for your appt with the nurse.

 

[Goonergal]

Great stuff @Becky72 hope all goes well with the nurse.

 

[DCUKMod]

A big well done, @Becky72 . In your shoes, I'd be impressing upon the nurse how important the testing was in order to inform you of the dietary choices your body was driving, to avoid more significant blood glucose rises.

Good luck with it!

On an aside @bulkbiker , I'd wager my pocketmoney that you'll have had your ketones tested along the way. Mine were even done a couple of months ago when the GP was using a dip test for an initial confirmation of a UTI.

On that day I saw a different GP to my usual one who talked me through the relevance of all the little squares on the strip and raised an eyebrow on the letones, but was content enough when I explained I'm a LC'er. Actually, not being a true LC Ninja, I was surprised I had ketones showing at all.

 

[bulkbiker]

On an aside @bulkbiker , I'd wager my pocketmoney that you'll have had your ketones tested along the way. Mine were even done a couple of months ago when the GP was using a dip test for an initial confirmation of a UTI.

They've never been reported in my online tests results so far as I know (rarely do a pee test) but I'll go back and take a look..

 

[DCUKMod]

They've never been reported in my online tests results so far as I know (rarely do a pee test) but I'll go back and take a look..

To be fair, the only thing noted on my record, on the "day of the dip" were the nitrites, as I'm guessing the rerst would be considered immaterial to the diagnosis.

@Becky72 - Apologies for derailing your thread.

 

[shelley262]

Hi all. My first post, although I have been lurking for some time learning so much from you all, so thank you. Diagnosed 3 years ago with a scary hba1c of 80. GP started me on metformin straight away along with the usual 'eatwell' nutritional advice and I've very much been up and down with my hba1c since, while I've battled some difficult mental health issues. A few months ago I finally took responsibility for my own health and embraced low carb high fat and intermittent fasting after reading of everyone's success on this forum. Its taken a while to beat my carb craving and find a new way of eating but as of my last blood test 10 days ago my hba1c is now 43. Saw a different GP to normal who gave me a gold star and asked how. I said I've really cut down on carbs, more exercise and test, test, test. I asked if any chance of testing materials on prescription (rather than drugs) and she promised to look into it. They're keeping a close eye on my progress and I have another DN review this week which I have been told is to assess me and make a decision about the testing materials. By the way I've cut out my evening metformin so am only on 500mg a day (without GP's knowledge I might add) as I'm fed up with the stomach issues. And anyway, I don't feel I need it now. My question today is about the DN review. The nurse is nice enough but has always been of the 'type 2 is progressive' way of thinking. Never discussed low carb with her so don't know her view on it. I am obviously very keen to get testing materials on prescription and appreciate how lucky I will be if this is the case. I've purchased some urine testers for ketones and they reveal the darkest colour, showing I am in ketosis. I know that the DN has always checked for ketones in my urine at a review and I have not even known what this meant until recently. I'm looking for tips on how to handle the review as according to my research ketones are only dangerous if accompanied by high readings. Is this correct? My readings are now usually around 5 or 6 so obviously I have things under control. Has anyone else on low carb had ketones detected at a review and was it an issue? I'm still so new to understanding it all so any advice very welcome. thanks

Welcome Becky and really thrilled for you that your bgs and hbaca1 has gone down so much well done, I took decision to low carb and then go keto about a year ago now. Re ketone testing and review. I’ve never had this test done as part of my review thankfully as not sure it would be understand the difference between nutritional ketosis and ketoacidosis! I tested to start with with ketone urine strips which turned dark purple but now on steady ketosis they hardly register much colour. I test using my own caresens dual machine now and was recording 8s when first got it but have slowly lowered and now motor along at just over 2 - a year later.
Suppose what I’m saying is don’t worry too much I think it’s unlikely I do take urine sample in but they haven’t checked for ketones to date! Would imaginebiggest issue will be th3 test strips because as you’ve done so well and on little meds they may not approve. Have a good try though I know members like @Bubbsie have taken their fight to higher levels and I believe has had some success. I decided to self fund as luckily at moment can afford to do so - just! Don’t know your age but if you give up on the meds and are below 60 you wouldn’t get free prescriptions so you’d have to pay even if prescribed.
Hope this helps well done again and good luck in you continued efforts and your DN review.

 

[Brunneria]

Hi @Becky72

If your nurse does a wee dip test and mentions ketones, please don't let it worry you in the slightest.
From what you have said, I am sure you fully appreciate the difference between nutritional ketosis and ketoacidosis - although she may not, because she is unlikely to come across it in most of her patients!

As a general rule of thumb, ketoacidosis is only a problem when high ketones combine with high blood glucose AND low insulin. It is therefore very rare in anyone unless they are type 1 diabetic or on a drug regime that may cause it.

For you, with an HbA1c of 43, no strong diabetic meds, and what looks like classic nutritional ketosis, you can be comfortable that her concern will be unfounded.

 

[HSSS]

I believe nice guidelines suggest strips are issued only when an integral part of control. Not sure of the exact wording. Maybe get a printout of it to take with you. Try and emphasise that the testing is precisely what has given you that control.

Also emphasise that the alternative to not testing would be more drugs, they pay either way and your health isn’t better with strips. No guarantees but I’d say using their guidelines against them is your best hope.

Somehow I got mine prescribed, at least for now, by my, discrete low carb advocate, dn just by asking for them and demonstrating I was motivated to use the results not just log them. You’ve already done that.

 

[NicoleC1971]

I think your ketones have to be at 10 + alongside high BGs for it to count as ketoacidosis. Unless you were taking certain drugs or were a type 1 then it is hard to see how you could get this condition. Any hcp who suggests your level of ketones is a problem would be showing ignorance. I would be surprised if the nurse did test for ketones given the extreme rarity of the condition in type 2s. Best of luck and keep on doing what is obviously making you feel better and allowing you to reduce your meds!

 

[Emma_369]

I was going to ask this exact same question @Becky72 so really glad to have found this thread!
I’m only a couple weeks into LCHF and have my first appointment since diagnosis with diabetic nurse tomorrow who has asked me to take a urine sample so I was worrying what if she found ketones as know especially when you first start this way of eating your body has to adjust to using fat and not carbs. Think perhaps if it does get raised I need to be confident enough to stand my ground with the dn as like you, my BG readings are usually between 4.5-6. Good luck for your review!

 

[HarryBeau]

I believe nice guidelines suggest strips are issued only when an integral part of control. Not sure of the exact wording. Maybe get a printout of it to take with you. Try and emphasise that the testing is precisely what has given you that control.

Also emphasise that the alternative to not testing would be more drugs, they pay either way and your health isn’t better with strips. No guarantees but I’d say using their guidelines against them is your best hope.

Somehow I got mine prescribed, at least for now, by my, discrete low carb advocate, dn just by asking for them and demonstrating I was motivated to use the results not just log them. You’ve already done that.

The problem is not with GPs or DSN's entirely but the narrow interpretation of the NICE guidelines by local CCG's...who use that excuse in most instances stop GP's or DSN's from prescribing testing strips...the NICE guidelines do not preclude the prescribing of testing strips...they say DO NOT ROUTINELY PRESCRIBE...not DONOT PRESCRIBE ROUTINELY...which means there is room for discretion...I have my strips on prescription now...on a point of principle I felt it was important to emphasis the necessity of providing testing strips for those T2's not on hypo meds who want to test & who will find a benefit from that...that is in accordance with NICE who use that as part of their criteria...I did self fund for almost a year...then decided to challenge my local CCG..I was successful....I would encourage others to do likewise...many cannot afford to self fund...I'd be happy to give some assistance to any who who wanted to challenge the routine refusal of strips on prescription for T2's...it is a vital part of my T2 management.

 

[HarryBeau]

Saw a different GP to normal who gave me a gold star and asked how. I said I've really cut down on carbs, more exercise and test, test, test. I asked if any chance of testing materials on prescription (rather than drugs) and she promised to look into it. They're keeping a close eye on my progress and I have another DN review this week which I have been told is to assess me and make a decision about the testing materials.

Becky you need to emphasis how important the testing is in controlling your diabetes...it is a constant battle for T2's to obtain testing strips on prescription (those not on hypo causing meds) however it is possible...the DSN at my surgery believes I am obsessive testing my BG...she firmly advocates the eat well plate...is dismissive of LCHF...I no longer see her for my reviews I see my GP instead...some DSN's are more enlightened lets hope your is one of them...it is your diabetes you know how you've achieved such awesome results...low carb & testing...I'd be horrified if you were refused but it is a possibility...be ready for that...justify your need for them...how they are integral to good control for you...good luck with the review...if you are refused by the DSN...you can take the matter further.

 

[Becky72]

Wow thank you all so much for your responses and support, I feel more confident now going to my review. It is so interesting reading about everyone's experiences, I am certain following other people's success on this forum gave me the incentive and strength to deal with my own situation.

 

[Becky72]

I was going to ask this exact same question @Becky72 so really glad to have found this thread!
I’m only a couple weeks into LCHF and have my first appointment since diagnosis with diabetic nurse tomorrow who has asked me to take a urine sample so I was worrying what if she found ketones as know especially when you first start this way of eating your body has to adjust to using fat and not carbs. Think perhaps if it does get raised I need to be confident enough to stand my ground with the dn as like you, my BG readings are usually between 4.5-6. Good luck for your review!

Hi Emma. How did your appointment with the nurse go?

 

[Becky72]

Update on my appointment, no request for urine sample so the ketone question never came up. Generally the nurse was very happy at my results and wanted to know how I'd done it. When I said testing was vital and that I tested 6 times a day I got the usual response of 'that's not necessary'. But you asked how I did it?! *sigh* A slight possibility of short term testing supplies for me to test ONCE A DAY but only after I maintain my levels for 6 months. Also was resistant to me coming off metformin completely as it offers protection for my heart. But doesn't being in remission, controlling my weight and keeping fit do the same? Well, yes but if she was me she would continue on low dose of metformin. I had the flu shot while I was there and my levels have been peaking at 7s and 8s since then.

 

[Emma_369]

Hi Emma. How did your appointment with the nurse go?

They sent my urine sample off to hospital for testing but when I phoned for results just told all normal so that’s good as can’t get any grief off the DN. Other than that she tried to take my bloods for my HBA1C as thought it was my 3month review not my first appointment only 3 weeks into diagnosis. Don’t think I’ll be relying on her help in truth but thankfully with everyone on here I feel on control anyway

 

[Bluetit1802]

They've never been reported in my online tests results so far as I know (rarely do a pee test) but I'll go back and take a look..

On Patient Access my urine dips aren't recorded in the test results. They are done by a Health Care Assistant who takes my blood and are recorded in the Consultation section. It seems she tests for glucose, protein, ketones, blood, nitrate and leucocytes

 

[DCUKMod]

On Patient Access my urine dips aren't recorded in the test results. They are done by a Health Care Assistant who takes my blood and are recorded in the Consultation section. It seems she tests for glucose, protein, ketones, blood, nitrate and leucocytes

Chances are the HCA will use a standard 10 test strip.