Ketones

[AJLang]

There has always been an understanding that ketones were dangerous. When I was diagnosed, 40 years ago, the only way of checking glucose was with a table dropped into urine. If this was too high there was then another tablet to drop into urine to check for ketones. In those days we weren't encouraged to do additional injections (not sure that it was possible with the insulin as it was) so when I was 7 and had an infection and was sick my mum stopped me eating and made me drinks lot but that didn't work so I was rushed to hospital in an ambulance because I had ketones - they kept me in for a week! 40 years later and there are times, possibly because of the gastroparesis, that I can be injecting insulin and my sugar won't come down (even if it's 26) so OH usually has to rush out to get ketones sticks so that we can can check. Fortunately it hasn't happened but if my blood sugar was 26, there were ketones and I was being sick then we would be immediately in touch with a medical person. The thought of DKA is very scary, particularly as it can happen so quickly for reasons out of your control

 

[Northerner]

As a side issue, I looked on the DUK FB site last night and a guy asked 'Wots ketones then?' The reply? 'It's the amount of sugar in your water m8'

I despair! But I did put them right on the subject...🙄

 

[bigpurpleduck]

As a side issue, I looked on the DUK FB site last night and a guy asked 'Wots ketones then?' The reply? 'It's the amount of sugar in your water m8'

I despair! But I did put them right on the subject...🙄

How scary is that?! 😱

I was told when I started pumping to check for blood ketones on the Optium every time my BG went over 14. Obviously I started off doing this, but quickly came to the conclusion that it was a waste of strips, as I never had any ketones but BG is above 14 on a semi-regular basis 😱

Now, I check if BG is stubbornly high despite corrections, or if BG is high alongside a No Delivery alarm on my pump, or if I'm feeling unwell. I rarely have any ketones, but I figure it's better to be safe than sorry. The NHS fund the meter & the strips, and it only takes 10 seconds to check, so why not? 🙂

 

[shiv]

I'll see what I can get from nursey in a couple of weeks. Thanks Alan. 🙂

I suspect it'll be the cheaper (urine) option, but they prob last longer.

Rob

Sorry if this has been answered already Rob, just spotted this.

Urine sticks last 6 months once the pot has been opened, and I've heard that really they only last 3 months. The blood ketone strips are more expensive, but they are packaged individually in foil, so it probably works out cheaper for your GP to prescribe 10 blood ketone strips (well, it obviously depends how often you need to check for ketones, for me I don't think it would be more than once every couple of months) than keep represcribing the urine ones?

Hope that makes sense!

 

[Northerner]

Sorry if this has been answered already Rob, just spotted this.

Urine sticks last 6 months once the pot has been opened, and I've heard that really they only last 3 months. The blood ketone strips are more expensive, but they are packaged individually in foil, so it probably works out cheaper for your GP to prescribe 10 blood ketone strips (well, it obviously depends how often you need to check for ketones, for me I don't think it would be more than once every couple of months) than keep represcribing the urine ones?

Hope that makes sense!

I had a little conversation with my consultant about this. The urine strips are ?5 for 50 (possibly less to NHS). The blood ones are ?20 for 10. The ketostix last 6 months after opening, the blood strips will probably have a shelf life of maybe 2 years. I think it's swings and roundabouts if you only occasionally need them, but more expensive if you use them frequently. That said, if you do need them more often than most, then you probably want the more up to date info the blood ones give!

 

[Robster65]

Thanks Shiv and Northerner. 🙂

I'll have a word and see what they want to prescribe. As you both say, not something that's done very often so the 10 strips would be an obvious choice for me but they rarely do the most obvious thing. 🙄

Rob

 

[Liz!]

Interesting. I was diagnosed 40 years ago and had the ghastly urine testing kit, my urine was ALWAYS unless i was hypo orange as my renal threshhold is low. i was never told about ketones and never given the extra tablet to check... in fact they've only come into my consciousness the last few years. i am asked at the hospital sometimes if I've tested and I just say no!

I think maybe the answer is that i am rarely ill. i had a chest infection the Christmas before last which i treated with steam and no antibiotics as they make me ill and it cleared up well. apart from that i haven't had anything, even a cold, for years and years. No sore throats, no sniffles, no sickness, nothing. I eat a lot of organic veg and fruit and drink garlic if I ever think i've been near someone who is sick and this seems to work.

Maybe if i was ever ill i should watch out, but perhaps the ketones i get are just throguh high blood suagrs which i can get down anyway. Ok, now i am up to speed!

 

[bev]

Interesting. I was diagnosed 40 years ago and had the ghastly urine testing kit, my urine was ALWAYS unless i was hypo orange as my renal threshhold is low. i was never told about ketones and never given the extra tablet to check... in fact they've only come into my consciousness the last few years. i am asked at the hospital sometimes if I've tested and I just say no!

I think maybe the answer is that i am rarely ill. i had a chest infection the Christmas before last which i treated with steam and no antibiotics as they make me ill and it cleared up well. apart from that i haven't had anything, even a cold, for years and years. No sore throats, no sniffles, no sickness, nothing. I eat a lot of organic veg and fruit and drink garlic if I ever think i've been near someone who is sick and this seems to work.

Maybe if i was ever ill i should watch out, but perhaps the ketones i get are just throguh high blood suagrs which i can get down anyway. Ok, now i am up to speed!

Hi Liz,
Your getting there.🙂Just to be clear, you do not have to be 'ill' to get ketones - you can and do get them through lack of insulin - so dont confuse the two - ketones creep up on you and you should really have a meter to tell you whether you have them and how high they are - dont rely on the family dog to tell you.😱🙂Bev

p.s. As a pump user - you should have been told all this as it is one of the 'risks' of using a pump.

 

[Northerner]

Hi Liz,
Your getting there.🙂Just to be clear, you do not have to be 'ill' to get ketones - you can and do get them through lack of insulin - so dont confuse the two - ketones creep up on you and you should really have a meter to tell you whether you have them and how high they are - dont rely on the family dog to tell you.😱🙂Bev

p.s. As a pump user - you should have been told all this as it is one of the 'risks' of using a pump.

I think particularly if you are on a pump, Liz, as there are more things that could go wrong and the insulin not get delivered (rare, I know, but even so).

 

[Liz!]

Oh, don't worry i know you don't have to be ill to get them, I'm just trying to say that that is probably why i've never had much of a probelm getting rid of them if i do ahve them - the fact that i am well at the time and it is only through lack of insulin/too much food/not enough exercise.

I do blood tests every two hours so they are very unlikely to sneak up on me! And an occlusion will alarm on my pump. So will any malfunction at all. I have a Cosmo. And far from relying on the 'family dog' as you call her, Lola is an alert dog. She has been trained to alert me to high or low blood suagr and does.

 

[bev]

Oh, don't worry i know you don't have to be ill to get them, I'm just trying to say that that is probably why i've never had much of a probelm getting rid of them if i do ahve them - the fact that i am well at the time and it is only through lack of insulin/too much food/not enough exercise.

I do blood tests every two hours so they are very unlikely to sneak up on me! And an occlusion will alarm on my pump. So will any malfunction at all. I have a Cosmo. And far from relying on the 'family dog' as you call her, Lola is an alert dog. She has been trained to alert me to high or low blood suagr and does.

Hi Liz,
Alex has had ketones due to two bent canula's and was rushed to hospital - he wasnt 'ill' at all - and is a healthy sporty child who eats very well - so it can happen to anyone.We also do tests every two hours - and it managed to sneak up on us - it can happen within minutes and escalate very quickly. As you know, we also use the Medtronic pump - but the pump doesnt *know* that you are not getting insulin if there is a bent canula or you have a lumpy site or if you are ill and insulin resistant - so one cant rely on the pump to alarm in these circumstances.

I only referred to the dog - because you did - I didnt mean any offence and it is great that you have an alert dog - but would still think about getting the Optium Xceed as the dog cant actually tell you what level of ketones you have, and whether you need a hospital visit or not - unless it is extremely clever.🙂Bev

 

[Flutterby]

Hi Liz
Ketones can very quickly lead to major problems and should always be taken seriously by both yourself and any medical person you see. I have had Diabetic Ketoacidosis many times but the most recent was about 12 months ago. I hadn't been sick but I felt sick, I rang my GP and the receptionist kept me on the phone until a doctor came on the line, he then said I was to go straight down to the surgery and would be seen straight away which I was. I avoided hospitalisation because they trusted me to be sensible but it was vital that they were aware, they were at the end of the phone, ready to act if need be. The time before that I actually went to the hospital primary care as it was out of hours. I was admitted straight away and put on a drip. Never underestimate ketones!

 

[Ergates]

I'd also say never to underestimate the danger of ketones, Liz.

 

[Garthion]

I seem to be one of the people who is prone to ketones (though I'm also prone to serious infections too) I've had DKA far more times than I can count, the first one was back in 2003 and it was my GP who spotted it and sent me to the hospital, then in October 2004, I ended up in a Welsh hospital with a bacterial infection of the blood, BG of 43.7 and Ketones of over 5, (I went to the local hospital first, and they transferred me under blue lights to the main hospital, spent a week and a half on sliding scale insulin and anti-biotic drip)

When I get chance I will post my experiences of DKA, it might shock you 😉

Got to go out now, so will have to do that latter.

 

[Liz!]

Interesting how one can be 40 years with type one, brittle diabetes which spikes high and low every day, and have never been told the seriousness of ketones!

i was thinking it may be also the fact that I am on a very low dose of insulin, the fact that having had my machine pack up once when I was two hours from home didn't make me go into it. I just did an injection of insulin when home and tested. Oh, and changed the site where the cannula had become blocked obviously.

I'm not also on a medtronic I'm on a Cosmo Bev which is completely different. It wouldn't know either if the insulin wasn't being 'seen' by my body due to absorption problems. but I'm presuming Alex is a child and they according to people here go into it more quickly don't they? i can't see me going into it within two hours as there are two times in the day I don't have any basal going in anyway, I'm on such a small doses.

PLUS I've just realised, I'm also on animal insulin and therefore have more of a well than someone on an analogue insulin as its effect is more prolonged.

But I have definitely taken the seriousness on board. Maybe I'll even get some stix!!

 

[Northerner]

Liz, given that you are on such low doses it may be that you have some residual beta cell function. I still have this, my consultant believes, which is why my basal requirements are so low. I had probably had reduced insulin production for up to two years prior to diagnosis as I had many symptoms, but because I was running a lot I was very insulin sensitive. The reason I went into DKA was because I caught a bad virus that completely overwhelmed my pancreas. Like you, I am very rarely ill and never have been, but it only takes one time and things can go pear shaped. You are in the happy position of being able to treat immediately with insulin, but as you have seen, even that is sometimes not enough. I sincerely hope it never happens to you of course!

 

[bev]

Interesting how one can be 40 years with type one, brittle diabetes which spikes high and low every day, and have never been told the seriousness of ketones!

i was thinking it may be also the fact that I am on a very low dose of insulin, the fact that having had my machine pack up once when I was two hours from home didn't make me go into it. I just did an injection of insulin when home and tested. Oh, and changed the site where the cannula had become blocked obviously.

I'm not also on a medtronic I'm on a Cosmo Bev which is completely different. It wouldn't know either if the insulin wasn't being 'seen' by my body due to absorption problems. but I'm presuming Alex is a child and they according to people here go into it more quickly don't they? i can't see me going into it within two hours as there are two times in the day I don't have any basal going in anyway, I'm on such a small doses.

PLUS I've just realised, I'm also on animal insulin and therefore have more of a well than someone on an analogue insulin as its effect is more prolonged.

But I have definitely taken the seriousness on board. Maybe I'll even get some stix!!

Hi Liz,
Alex is also on small basals - he is very insulin sensitive too. I would imagine the reason that you didnt get ketones in the two hours when your machine packed up - was because you had just had a bolus and the profile of the insulin was such that it lasted for long enough for you to get home to inject.

I have no idea whether children get ketones quicker than adults. We do operate 'tight control' so I would presume that Alex's body is more highly tuned than someone who isnt so well controlled - and probably reacts a lot quicker.

i can't see me going into it within two hours as there are two times in the day I don't have any basal going in anyway, I'm on such a small doses.

Liz, anybody can get ketones - you will not be immune to them because you have a zero basal two times in the day. It is not linked to whether you have a basal or not - it is simply down to having a lack of insulin when you *need* insulin or because you are ill and your body is fighting an infection. You can develop ketones any time of the day or night.

It doesnt make any difference what insulin you are on (whether it is analogue or animal) - you dont have a background insulin to back you up when you are on a pump - hence the reason that everyone is told the risk of DKA is higher on a pump. It doesnt matter what profile the insulin is either - if your body is lacking insulin or you are fighting an infection then you are at risk of ketones - the profile is irrelevant.

I wouldnt bother with the urine sticks - they are not accurate - they lag behind by a few hours - it would be much better to have the blood ketone meter as it is 'real' time and accurate. I am pleased that you have taken the seriousness of ketones on board - because my friends son was within minutes of dying from DKA when he was eighteen months old and on a life support machine - and his body was slowly dying from the acid raging around his little body and damaging all his major organs - which all happened within a few hours. The parents were told to expect the worst - but he is now a happy and healthy eleven year old - luckily.🙂Bev

 

[Liz!]

Northerner, what would be the significance of having some residual beta function? I have sometimes wondered this in fact. Is treatment differet i any way? Do you need (or would it be helpful) to actually find this out or is it irrelevent?

 

[Pumper_Sue]

Hi liz,
I'm interested to know how much insulin you take in a day 🙂

 

[Northerner]

Northerner, what would be the significance of having some residual beta function? I have sometimes wondered this in fact. Is treatment differet i any way? Do you need (or would it be helpful) to actually find this out or is it irrelevent?

Well, in relation to this thread it would mean that you would have at least some insulin circulating that might help counter the ketone problem. Insulin not only helps glucose into cells for energy, but it is also involved in the process of removing ketones from the system - so if you do have some function left this might have helped you avoid problems through your life.

Also, in the Joslin study of long-diagnosed diabetics (50+years) they have been finding that many of those who have avoided complications still have some beta cell function, and this is thought to be a factor in helping them avoid complications.

It can be tested for with a C-peptide test I believe, as C-peptide is produced in equal quantities to natural insulin, but not artificial insulin. However, I'm not sure whether using animal insulin means this test wouldn't work.