Given ketone testing machine

Hello,
Looking for a bit of advice and reassurance. I saw the specialist diabetes nurse this week at the hospital and she was delighted with my hba1c as it is in range at 56. Best I’ve had since Aug 2018. She said carry on as I am, and I’ll see the consultant for review in the Summer. She went on to explain the letter regarding my test results, and from them I am late onset Type 1. Anti Gad positive 1084 and Islet Cells Positive. I currently am making insulin quite a good level (which baffles them) I take a med that makes me produce insulin with my meals and it is short lasting 4 hours. She then promptly got a ketone testing machine and told me that if I started to feel unwell, thirsty etc and had sugar reading over 16 to test for ketones. I wasn’t really expecting this! On reflection I’m quite happy as at least if that happens I can now test at home and then act.
She said not to ignore the symptoms or levels and go to a&e if ketones are 1.5-2 higher. She said I might get ill then it tips me over. Could be in a year could be in ten. She said it’s something they can’t say and that I should be prepared.
Left feeling a bit overwhelmed, with the whole late onset type 1 and clutching my ketone machine hehe, but I had been expecting that outcome to some degree as I’d seen the anti gad results.
Do you all test ketones if sick or if blood sugars are very high?
Many thanks.

NicoleC1971 said:

All type 1s or 1.5 lada whatever should test for ketones both if they are ill and/or have bgs over 16 or have symptoms.
I don't test unless I am ill personally because I don't seem to get many keones in my pee even if my bg is off the roof.
However I've had ketoacidosis when very ill and when I made an insulin dosing mistake and its a very nasty thing plus can be life threatening.
If you've got generally good bgs though this is unlikely to happen but if and when you begin using insulin, there is a risk that your bgs will be a little more unstable so just like a hypo kit you need ketostix too. If you've got a keto blood test machine that is much better btw.
Lastly doctors and nurses are trained to panic about ketones in type 1/1.5/insulin dependant diabs because of the risk of ketoacidosis but those of us who follow a low carb diet can be in nutritional ketosis by eating very low carb but it should be noted that this is not a problem!

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That’s great info thankyou. Yes it’s a blood testing machine, as my blood sugar one didn’t test for it. I will use it then if I get high blood sugars or any of the symptoms that I’m running out of insulin.
She did say if been ill and missed dinner etc and next morning showed ketones they can be starvation ketones..which I’m guessing is like keto diet type ones? I was on insulin in 2015 but never told about ketones then. Thanks for the advice it helps!

kaylz91 said:

Did she tell you what level above you need to check for ketones?

I see the comment above mentions 16 but I and many others have been told 14 and above to check for ketones
xx

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Yes I have to say I find the nurses confusing sometimes, as at first she said to test my blood sugars at least daily and if they where above 13 to test for ketones. Then few minutes later she’d said if feeling thirsty, weeing lots, unwell and above 16 test for ketones, if it showed high to act on it and just go to a&e, not to bother with doctors etc.
I’ve had blood sugar levels reach 23.9 (that’s my highest so far) so I can feel when up or low. Guess it’ll be illness or just not producing enough insulin one day that I might need to test and go from there. I think the logic behind it might be I don’t have appointments now (other than review with consultant in July) so I can keep track myself. It’s a strange one, as GP diabetes nurse has signed me over to specialist team in the hospital, when I saw her this week, she said she’d discharge me from her clinic as all is ticking along. So until something goes wrong or changes...
I had a cold over Xmas and my blood sugars went up to 13.7 and I really felt it this time! From sitting at 3-9ish most of the time for the last 2 months.
Thanks for your help.

kaylz91 said:

3 isn't a safe level to be at, anything under 4 requires hypo treatment xx

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Yep anything below 4 I need to treat. I was trying to give an idea of the range of my readings now ,3 being low and 9 going up to, but didn’t do a good job hehe sorry!
Under 4 and I’m shaking and eating jellybabies waiting to feel ok again. Can’t function well at all.
It’s more the use of ketone strips in machine, being a new thing for me, never tested for them before. Wondered how often people have to or is it only for sick days etc.

kaylz91 said:

@Rose22 I cant stand jelly babies anymore, I had a very stubborn hypo, started while I was waiting to be picked up, a 10 mil car journey, a 10 minute wait and the whole service of my partners grans funeral, I was so embarrassed! and I couldn't stomach jelly babies after that after consuming a lot! I use mini bags of drumstick squashies or my new favoured lift juicy raspberry glucose tabs, what machine was it they supplied you with? I only test when above 14 and if I'm unwell but ketone strips are very expensive so its not a good idea to use them just whenever like some do xx

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Oh nooooo! Gosh that must’ve been pretty horrendous for you. I quite like them hehe but I only eat them when low. I did make the mistake of leaving a bag in the glove box in the car in the summer...and my son asked me what was hanging out underneath? Looked like sap or something? Perplexed I pulled at it, then remembered the jellybabies! Opened it and they’d melted in the bag to one big lump and liquified to pour through the glove box gap! Oops! So yeah that should be put me off them!?
My daughters fav sweets are squashies, strawberry! So could swap to those! But not sure who would eat more me or her.
The glucose tabs sound good for the car and pockets will check them out thanks.
Perfect thanks, I think I will do same, only test if think somethings up or running high.