# Ketones



## Liz! (Feb 16, 2011)

What's a Optium Xceed Bpd? Never heard of one. I have to admit in all my 40 years diabetic i have never tested for ketones despite having very high blood suagrs regularly. What's the point? Your blood sugar goes down eventually...


----------



## Northerner (Feb 16, 2011)

Liz! said:


> What's a Optium Xceed Bpd? Never heard of one. I have to admit in all my 40 years diabetic i have never tested for ketones despite having very high blood suagrs regularly. What's the point? Your blood sugar goes down eventually...



If your blood sugar doesn't go down, perhaps because you've got a possibly unapparent infection, then the ketones will rise and rise, raising the acidity of your blood and leading to DKA. You should always check for ketones if your levels are unusually and persistently high, despite corrections. If, for some reason the insulin is not getting through or not working properly your levels won't go down - I can testify to that


----------



## bev (Feb 17, 2011)

Liz! said:


> What's a Optium Xceed Bpd? Never heard of one. I have to admit in all my 40 years diabetic i have never tested for ketones despite having very high blood suagrs regularly. What's the point? Your blood sugar goes down eventually...



Hi Liz,
I am surprised that you have never tested for ketones.If you have ketones and your levels are high then you are at risk of DKA - it makes sense to test because if the ketones are too high then your body cant naturally get rid of them without lots of insulin and water and sometimes that just isnt enough to do yourself at home - you might need help to flush them out at hospital. All newly diagnosed children are given the Optium xceed (well nearly all) and told to test for ketones if levels are unusually high. Also, you can get ketones if your levels are low - so testing is needed occasionally or if feeling ill generally. Ask your team if they can give you one.Bev


----------



## Liz! (Feb 17, 2011)

Well... I've never had any problems, in 40 years, so is it really necessary? My OH and children (and the dog) tell me if they smell them, and I would inject another 20% correction insulin over 16, in fact my pump does that automatically. Can it do harm without you knowing? I drink about 5 litres a day anyway.

Oh, Bpd to have this question on your thread!


----------



## novorapidboi26 (Feb 17, 2011)

Liz! said:


> What's a Optium Xceed Bpd? Never heard of one. I have to admit in all my 40 years diabetic i have never tested for ketones despite having very high blood suagrs regularly. What's the point? Your blood sugar goes down eventually...



Ketones are acidic, so getting them processed quick is essential........

If I have ketones I need to know what level they are at so I know how much insulin to take, also a test every 2 hours until they are gone is usually the process I follow..........


----------



## Robster65 (Feb 17, 2011)

Not everyone has a family or dog to tell them if their breath smells of pear drops.

I haven't had ketone strips for donkey's years but I feel I should ask for some. 

Rob


----------



## Northerner (Feb 17, 2011)

Robster65 said:


> Not everyone has a family or dog to tell them if their breath smells of pear drops.
> 
> I haven't had ketone strips for donkey's years but I feel I should ask for some.
> 
> Rob



It's worth having the ketostix (urine) sticks at least Rob, although the blood ketone strips give a more up to the minute reading.


----------



## Robster65 (Feb 17, 2011)

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


----------



## novorapidboi26 (Feb 17, 2011)

I never really tested for ketones until I did dafne, and then the man flu came, the ketones stix came in very handy during that time


----------



## grandma (Feb 17, 2011)

novorapidboi26 said:


> I never really tested for ketones until I did dafne, and then the man flu came, the ketones stix came in very handy during that time



I was the same had the D for 36 years and never tested for ketones untill I did Dafne untill yhen never even been told to do it


----------



## bev (Feb 17, 2011)

Liz! said:


> Well... I've never had any problems, in 40 years, so is it really necessary? My OH and children (and the dog) tell me if they smell them, and I would inject another 20% correction insulin over 16, in fact my pump does that automatically. Can it do harm without you knowing? I drink about 5 litres a day anyway.
> 
> Oh, Bpd to have this question on your thread!



Hi Liz,
I think the difference now is that we have the tools to be able to check and react quickly. If you are happy with the way you do things then there is no need to change - as long as what you are doing isnt causing any damage without you knowing.Bev


----------



## Liz! (Feb 17, 2011)

BUT WHY!!!!! Just being told that ketones are acidic tells me nothing. So what?


----------



## Robster65 (Feb 17, 2011)

http://en.wikipedia.org/wiki/Diabetic_ketoacidosis


----------



## everydayupsanddowns (Feb 17, 2011)

Liz

Like you I've rarely had ketostix in the house. Even when I've thought of getting them I've usually forgotten to ask the GP to add them to repeat script

I've got some now (they came in the box of goodies with the Expert meter). only tested 'trace' once over the last few months (after several days of higher than normal levels). 

I suspect some people produce ketones more readily than others (as always Your Diabetes May Vary).

It's a long tiome ago for us now... but can you remember how grim you felt at the time you were diagnosed? Raging thirst, lethargy, banging headache, vomiting maybe?

That was the ketones - DKA.


----------



## Liz! (Feb 17, 2011)

Thanks Rob. So, if you have ketones present to a certain degree you should go to hospital? Do they take you seriously? I've had blood glucose in the 20s and definite ketones, but just give myself insulin, don't eat and drink a lot. would they really take you seriously? And do you refer yourself? And how? Surely you'd be more likely to contract something else going into hospital?

I've never felt sick or vomited and never in my life had a headache. i felt tired when diagnosed, and thirsty. And done for about 6 months. Couldn't walk easily.


----------



## Robster65 (Feb 17, 2011)

I can only think of a couple of occasions when I've felt really dizzy and nauseous after being in the high 20s. 

I've only had one box of ketone strips for the optium and never found more than a trace. As mike says, maybe some people are more susceptible than others but if they're there in any quantities, I would imagine they need to be flushed out or they will do damage.

Rob


----------



## Northerner (Feb 17, 2011)

Liz! said:


> Thanks Rob. So, if you have ketones present to a certain degree you should go to hospital? Do they take you seriously? I've had blood glucose in the 20s and definite ketones, but just give myself insulin, don't eat and drink a lot. would they really take you seriously? And do you refer yourself? And how? Surely you'd be more likely to contract something else going into hospital?
> 
> I've never felt sick or vomited and never in my life had a headache. i felt tired when diagnosed, and thirsty. And done for about 6 months. Couldn't walk easily.



I had DKA when diagnosed. Of course, I didn't have any access to insulin, and that's why my levels of both BG and ketones continued to rise. I was almost comatose, hadn't eaten or drunk anything for 4 days, had lost 17 pounds in that time, had a suspected heart attack in hospital and was at risk of major organ failure. Basically, the ketones turn your blood acidic.

The thing is, that even if you have access to insulin, if you are fighting an infection (usually the cause of high levels + ketones present), then you may not be able to correct it yourself and then you need intraveneous insulin. You may have been lucky that you have never reached this stage, but it's always a danger.


----------



## HelenM (Feb 17, 2011)

Interestingly,  a sizeable percentage of the population are unable to smell ketones, so it's not a reliable indicator.

Being on a pump it's really important to be able to test in some way. if the pump stops delivering insulin during the night then there may be quite a few hours with no insulin at all.
In children and young people ketones level  rise far more quickly than adults.(that's true even in non diabetic children when starving)
Also,some people,have a bit more residual insulin  than others and this  acts as a brake on fat breakdown and  ketone production unless glucose reaches very high levels or or  stay raised for a long time.

Liz there is  some good info here on what to do; Its very much  the same as what Iwas told when I went on the pump...( though I was also given specific amounts of insulin to give a various ketone levels)
http://www.diabetes-education.net/pdf/resources/insulin_pump_workbook.pdf

P27  what should I do if I have a positive  ketone test?
p29 a flow chart


----------



## randomange (Feb 17, 2011)

Liz! said:


> Thanks Rob. So, if you have ketones present to a certain degree you should go to hospital? Do they take you seriously? I've had blood glucose in the 20s and definite ketones, but just give myself insulin, don't eat and drink a lot. would they really take you seriously? And do you refer yourself? And how? Surely you'd be more likely to contract something else going into hospital?
> 
> I've never felt sick or vomited and never in my life had a headache. i felt tired when diagnosed, and thirsty. And done for about 6 months. Couldn't walk easily.



I was concerned about not being taken seriously, or having to wait forever to be seen, so I asked about this at DAFNE.  We were told to go to A&E, explain that you are a type 1 diabetic with high BG and ketones, and that you have been following your sick day rules as given to you by the hospital but you're having problems getting rid of the ketones.  They said there might be several reasons why you might have to do this, e.g. being ill and struggling to keep anything (even water) down, and that they would rather we went to the hospital if we were unsure rather than struggle on at home - particularly as DKA can develop very quickly (I went from being relatively ok with a mild stomach bug to full blown DKA in less than 24 hours).  

I think it's all a case of being prepared, and being comfortable that you can deal with it.  I also think that what several others have said is correct, in that some people are more prone to ketones/DKA than others, and you might be one of those people who is less susceptible.


----------



## bev (Feb 17, 2011)

Liz! said:


> Thanks Rob. So, if you have ketones present to a certain degree you should go to hospital? Do they take you seriously? I've had blood glucose in the 20s and definite ketones, but just give myself insulin, don't eat and drink a lot. would they really take you seriously? And do you refer yourself? And how? Surely you'd be more likely to contract something else going into hospital?
> 
> I've never felt sick or vomited and never in my life had a headache. i felt tired when diagnosed, and thirsty. And done for about 6 months. Couldn't walk easily.



Hi Liz,
The 'sick day' rules say that if you have ketones of 1.5 or over then you should contact your healthcare provider and if they are over 3 then you need to go to A&E as this is considered to be dangerous and you could be heading for DKA. If you have never tested , then it could be that you often have ketones but that you are so used to it that you dont notice any symptoms or very little symptoms. It is not good to have acid raging round your body - you dont know what long term damage this can do and as you clearly do lots of research and are very wary of putting anything into your body that might cause harm (and rightly so) - then it surprises me that you feel that is is allright to have ketones and not worry about them. I think the difference between newly diagnosed type 1's now and those diagnosed years ago is that things have moved on and we know more now, so we are given the tools to be able to react to things like ketones simply because it is recognised that they are dangerous and can be fatal if not treated properly. Perhaps you could ask your team what their views are on ketones and how they would advise treating them. The Optium Xceed meters are often given free to clinics so perhaps they will be able to provide you with one.Bev


----------



## AJLang (Feb 17, 2011)

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 (Feb 17, 2011)

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 (Feb 17, 2011)

Northerner said:


> 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 (Feb 17, 2011)

Robster65 said:


> 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 (Feb 17, 2011)

shiv said:


> 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 (Feb 17, 2011)

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! (Feb 17, 2011)

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 (Feb 17, 2011)

Liz! said:


> 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 (Feb 17, 2011)

bev said:


> 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! (Feb 17, 2011)

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 (Feb 17, 2011)

Liz! said:


> 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 (Feb 17, 2011)

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 (Feb 17, 2011)

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


----------



## Garthion (Feb 17, 2011)

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! (Feb 17, 2011)

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 (Feb 17, 2011)

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 (Feb 17, 2011)

Liz! said:


> 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.
> 
> ...



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! (Feb 17, 2011)

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 (Feb 17, 2011)

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


----------



## Northerner (Feb 17, 2011)

Liz! said:


> 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.


----------



## Liz! (Feb 17, 2011)

Interesting.  i have no complications, despite having had it for 40 years, and had brittle control, ie half the time high, half the time low. Any Dr who looks in my eyes says they can see no evidence that I am diabetic at all.

Oh edit to say to Sue, i have a total of 12 u per day basal. And about 4 units of boluses. I don't eat much carb. If I'm doing a LOT of exercise then that would rise to 6 - 10 units.


----------



## Pumper_Sue (Feb 17, 2011)

Liz! said:


> Interesting.  i have no complications, despite having had it for 40 years, and had brittle control, ie half the time high, half the time low. Any Dr who looks in my eyes says they can see no evidence that I am diabetic at all.
> 
> Oh edit to say to Sue, i have a total of 12 u per day basal. And about 4 units of boluses. I don't eat much carb. If I'm doing a LOT of exercise then that would rise to 6 - 10 units.



Oh that's not much dif than me then Liz, but I eat carbs in moderation
and have steroids for breakfast.


----------



## Liz! (Feb 17, 2011)

Steroids for breakfast? Pourquoi?


----------



## Pumper_Sue (Feb 17, 2011)

Liz! said:


> Steroids for breakfast? Pourquoi?



I have addison's disease


----------



## Liz! (Feb 17, 2011)

Aaaah. So you think that 12u basal is normal?


----------



## Northerner (Feb 17, 2011)

Liz! said:


> Aaaah. So you think that 12u basal is normal?



I'm on 3 units basal (lantus)


----------



## Becca (Feb 17, 2011)

Northerner said:


> I'm on 3 units basal (lantus)



Blimey, Northerner, that's a small amount of basal!  

What's your TDD?


----------



## Pumper_Sue (Feb 17, 2011)

Liz! said:


> Aaaah. So you think that 12u basal is normal?



Everyone is dif Liz. Some use more some use less but it not an abnormal amount that's for sure. 
What it boils down to though is you need what you need.

I do suspect though if you sorted your basal out by doing some proper basal testing and changing at the 2 hour mark you would not be a brittle diabetic as you call it.


----------



## Ellie Jones (Feb 17, 2011)

My basal is 10 units or under per day depending on what I'm doing, with a moderate carb intake I use on adverage 17 TDD...

We all will have a slightly different tollerance to ketones, which can change at different times, I've not have any problems with ketones since I spent almost half of my last pregnancy in hosptial being treated for DKA, which would start to kick in very quickly if my BG hit around 8mmol/l..

But standard advice is given that if your BG is above 12mmol/l then test for ketones and treat appropiately with sick day rules, the rules can be slightly different either using a calculation of your last day just go for a straight calculation of an increased correction jab...

I've never been told that above any figure that I must inform my HCP's or even seek treatment, but advise based on how I'm feeling and coping with the situation in hand..  As my guide..

DKA in children can be harder to pick up not so much that it can happen quicker than an adult, but because the don't pick up on symptons or react in the same manner as adults, don't for get a normal child will be runing around one minute, then throwing their hearts up the next without very little warning!  It's part of being a child!


----------



## Liz! (Feb 17, 2011)

I've always been like though Sue, even when i started off on the pump and had been through all the fastings etc with humalog in the pump. I was MUCh better controlled than now, BUT still had hypos and hypers for absolutely no reason that could be discerned. the difference was also in what i swung between on the whole - from very low to about 10, now I go up to 20s sometimes. i spent 6 weeks in hospital once with them doing all the fastings etc  with a consultant determined to get me ok, then he had to go on holiday and another Consultant poached me and still couldn't get it right! This was just before i got pregnant, i had to be as good as possible before getting pregnant, and i left better than i was, but only if i did nothing at all!  
Although actually my control became easy while pregnant. Went back the same after, and easy again during the next pregnancy.


----------



## Adrienne (Feb 17, 2011)

*brittle diabetes*

Jumping in late here as been to see Hairspray at theatre (a must if you have not).    

Here we go, definition from the online dictionary re brittle:

*brittle *brit?tle
   
[brit-l]  Show IPA 
adjective, -tler, -tlest, noun, verb, -tled, -tling. 
?adjective 
1. 
having hardness and rigidity but little tensile strength; breaking readily with a comparatively smooth fracture, as glass. 
2. 
easily damaged or destroyed; fragile; frail: a brittle marriage. 
3. 
lacking warmth, sensitivity, or compassion; aloof; self-centered: a self-possessed, cool, and rather brittle person. 
4. 
having a sharp, tense quality: a brittle tone of voice. 
5. 
unstable or impermanent; evanescent.  

So I would suggest that number 5 'unstable' would relate to diabetes.

And here we have the definition of brittle diabetes itself :

Brittle diabetes, also known as unstable diabetes or labile diabetes, refers to a type of insulin-dependent diabetes characterized by dramatic and recurrent swings in glucose levels, often occurring for no apparent reason.[1]

The result can be irregular and unpredictable hyperglycemias, frequently with ketosis, and sometimes serious hypoglycemias. Brittle diabetes occurs no more frequently than in 1% to 2% of diabetics.[2]

Although brittle diabetes normally refers to a severe, uncontrolled form of type 1 diabetes, it can also describe poorly controlled type 2 diabetes.

Brittle diabetes usually affects type 1 diabetes patients between the ages of 15 to 30, but this condition is also evident in elderly people with type 1 or type 2 diabetes.

People who have undergone a total pancreatectomy often develop brittle diabetes.[3] 

So I would suggest that my daughter has brittle diabetes due to the last one.

It is interesting to note that it also describes poorly controlled type 2.  Well we all know that for most, it is the GP's who make that sentence true by blocking the use of glucometers etc etc.

I also would suggest that it is not always brittle diabetes and that sometimes, probably more often than not, medical teams have not helped enough and not worked out proper basals on a pump or MDI and not worked out carb ratios, again on a pump or MDI and so control is out the window.  I'm damn sure that if teams looked more closing at their patients and actually really helped them as they should a lot more people would have been results, truer HbA1c's rather than the lower ones due to hypos etc and it would cost the country far less in the long run with problems.


----------



## Liz! (Feb 18, 2011)

Can be a lifelong condition though! My main problems have always been unexpected hypos. If you look at my profile of a week, doing eactly or almost the same stuff, and then the next week, they are totally disimilar. As my son will tell you in disgust, we eat the same things day by day, week by week to try to keep as much control as possible. All my ratios have been worked out. 

i have resisted basal tests though recently, mainly because i'm so scared now of hypos, in fact I try to keep a bit high. Mainly because i had a two hour hypo a while ago which has definitely affeceted my memory and brain function. i think I'm phobic now!


----------



## Pumper_Sue (Feb 18, 2011)

Liz! said:


> i have resisted basal tests though recently, mainly because i'm so scared now of hypos, in fact I try to keep a bit high. Mainly because i had a two hour hypo a while ago which has definitely affeceted my memory and brain function. i think I'm phobic now!



Liz untill you take the plunge and sort yourself out, nothing will change. 
If your basal needs are changing so often have a good look at the cannula you are using and perhaps use a shorter one or a dif angled one.
But as I have said before you are stacking insulin like anything. That is obvious if you are hypoing for 2 hours like that or needing more than 15 carbs to fix a hypo then your basal is well and trully out.
I had the problem of basal kept changing even though days and food the same,so spoke to John at A.T. who went through everything with me, then sugested I tried a dif length cannula..........problem solved.
Re did my basals and all well for a couple of months now.


----------



## Liz! (Feb 18, 2011)

I'm not hypoing for two hours! OH woke me up in the morning one day as he was going on a two hour outing - he said, are you ok, and I replied, yes. Then tried to get out of bed, that's the last thing I recall. He found me on the floor when he got back. So I was unconscious for two hours. My basals were altered after that!  I am going to do some testing in fact I'm having a CGM fitted soon to see what's happening.

Tell me how a cannula length can change things? I have a short length of tubing as my needle goes in my leg. Longer means troubles trying to keep it out of the loo!


----------



## bev (Feb 18, 2011)

Liz! said:


> Can be a lifelong condition though! My main problems have always been unexpected hypos. If you look at my profile of a week, doing eactly or almost the same stuff, and then the next week, they are totally disimilar. As my son will tell you in disgust, we eat the same things day by day, week by week to try to keep as much control as possible. All my ratios have been worked out.
> 
> i have resisted basal tests though recently, mainly because i'm so scared now of hypos, in fact I try to keep a bit high. Mainly because i had a two hour hypo a while ago which has definitely affeceted my memory and brain function. i think I'm phobic now!



Hi Liz,

If you are doing the same thing and eating the same foods - then you are the perfect candidate to do 'basal testing' and 'ratio testing' because you will be able to see patterns emerging. If you are scared of basal testing because of hypo's then this is telling you something - your basals are out.

How many basals do you have in a twenty four hour period. Alex has 8 - and we sorted this out by doing blocks of 4 hours and once we got one block right we moved onto the next.

Do you make the changes yourself or does your team do it for you. I only ask because we were nervous of making changes - but once we did a few changes we found it easier each time and now dont often ask the team for help. 

It is great that you are having a CGM fitted as this will give some insight into why you have 'brittle diabetes' (although I have to say that our team dont like this phrase as it means that people might feel that there is an obstacle that they cant get round and is demotivating) and hopefully will help you to work out how you can change things for the better. If you want to, you can post the download from the CGM and some of us who use sensors could look at it to see if we can see patterns emerging.Bev


----------



## shiv (Feb 18, 2011)

It can affect absorption of insulin, which may play a factor in hypos and hypers.


----------



## Pumper_Sue (Feb 18, 2011)

Liz! said:


> Tell me how a cannula length can change things? I have a short length of tubing as my needle goes in my leg. Longer means troubles trying to keep it out of the loo!



Liz,
I am not talking about tubing length, but the cannula in your body.
As Shiv says the wrong length will affect absorbtion. If you are hitting muscle because your cannula is to long then it will cause major problems.
As to longer tubing going down the the loo, have you ever thought to put a loop in any excess tubing and stick it like a hose pipe would be rolled?
You also need to think about site rotation because if you are not doing so then you will have scare tissue build up and even more problems.

PS,
Having a CGM fitted is all well and good but only if you act on the info provided and change your basals at the correct time. The CGM wont tell you to change your basal at the 2 hour mark only you can do that.


----------



## Liz! (Feb 18, 2011)

I rotate leg and site, I have had CGM several times a year as far back as several years, I am very thin and use the shortest cannula... I am allergic to tapes so don't roll the tube, just use a short one. After CGMs i go on what is recommended for me. I can't read the info myself as I don't have a PC.

When you talk about a pattern emerging - there IS no pattern that's the whole point. My highs are never high at the same time or in the same part of the day even day to day and ditto the lows. When I or they do see a pattern we do something about it but that isn't very often!

i have about 8 basal changes too.


----------



## bev (Feb 18, 2011)

Liz! said:


> I rotate leg and site, I have had CGM several times a year as far back as several years, I am very thin and use the shortest cannula... I am allergic to tapes so don't roll the tube, just use a short one. After CGMs i go on what is recommended for me. I can't read the info myself as I don't have a PC.
> 
> When you talk about a pattern emerging - there IS no pattern that's the whole point. My highs are never high at the same time or in the same part of the day even day to day and ditto the lows. When I or they do see a pattern we do something about it but that isn't very often!
> 
> i have about 8 basal changes too.



Hi Liz,

I think this is the problem - using a CGM that is only read once you take it back to clinic is not really going to help - it is too late after the event has happened. The only time they are any good is to see if there are drops overnight - but the CGM we use on the Medtronic is an 'instant' result that shows on your pump so you are able to react to it in 'real time' as opposed to waiting a week and then finding out what has happened. Being pro-active is the key to good control. Does your clinic have a CGM (like a navigator or dexcom) that you can use on a regular basis as I feel this is the only way to build up a pattern and to enable you to change things. With this sort of CGM it will alarm when you are going low or high - so you can avoid these swings that you are experiencing and this would help you to feel more confident that you wont suffer a two hour low for example.

Do you feel comfortable changing things by yourself - if so - the CGM we use would be great for you as you dont need your team to ask - you just make the changes as they occur. Looking at a CGM for the past week is not helpful as one week to the other can be different. I have lots and lots of downloads of sensor usage and not one of the weeks is the same - so how could you be expected to sort things out by just using a CGM (that you cant act on) - once in a while.

You can download the data onto either a lap-top or a PC and this would enable you to make changes instantly rather than waiting for clinic. I am sure there are lots of people on here who would help you interpret the data - I know I would and so would Adrienne (who has years of experience using sensors).Bev


----------



## Liz! (Feb 18, 2011)

i don't have a PC. I have a mac. So any data I get from anything, my blood mmachine ot CGM has to be taken to the clinic.


----------



## bev (Feb 18, 2011)

Liz! said:


> i don't have a PC. I have a mac. So any data I get from anything, my blood mmachine ot CGM has to be taken to the clinic.



Hi Liz,
Thats a nuisance isnt it. I am fairly sure there was a parent on here with a Mac and had the same problem - but she did find a way round it - I wonder if she still posts. I will ask Adrienne if there is a way round it as she is great on computers (unlike me) and if there is a way then she will know it.Bev


----------



## Liz! (Feb 18, 2011)

Sorry, didn't finish last comment off as just back from 2 hour dog walk and BS only 2.3. 

Unfortunately even thoughabout 10-20% of people have them now pharmaceutical companies still won't get the softtware written, which is mad. 

However last month I was sent a Bayer Bontour USB, the fist blood testing machine to download to a mac. Unfortunately I looked at the data and since it was all over the place i just became very confused! Maths and data are just dots to me. I am an artist type!


----------



## bev (Feb 18, 2011)

Liz! said:


> Sorry, didn't finish last comment off as just back from 2 hour dog walk and BS only 2.3.
> 
> Unfortunately even thoughabout 10-20% of people have them now pharmaceutical companies still won't get the softtware written, which is mad.
> 
> However last month I was sent a Bayer Bontour USB, the fist blood testing machine to download to a mac. Unfortunately I looked at the data and since it was all over the place i just became very confused! Maths and data are just dots to me. I am an artist type!




Hi Liz,
So have you managed to upload the data from you meter. I know what you mean about looking at numbers and graphs - I never used to be any good at trying to work out what they were - but it will come with practice and to be honest I am also useless at maths - so if I can do it anybody can - he he. If you have the data you can put it on here - I have done it before (although with a lot of help) and perhaps we could look at it together if that would help.Bev


----------



## Liz! (Feb 18, 2011)

That's kind Bev. I shall get a bit more consecutive data (i have been using more than one machine due to various things) and try that. I have decided to take this in hand now i have a bit more energy - found recently I had a severe vit D deficiency and have just taken the first load of vit D!  

Actually all diabetics are prone to this it's a good idea to get it checked. Vit D deficiency can lead to heart disease among other things (depression, certain cancers...) so it's worth doing!

I'm not optimistic re the graphs etc. My Grammar school wouldn't let me take maths O level (I passed the other 9 fine!) as they said it would be a waste of money! Lol.


----------



## bev (Feb 18, 2011)

Liz! said:


> That's kind Bev. I shall get a bit more consecutive data (i have been using more than one machine due to various things) and try that. I have decided to take this in hand now i have a bit more energy - found recently I had a severe vit D deficiency and have just taken the first load of vit D!
> 
> Actually all diabetics are prone to this it's a good idea to get it checked. Vit D deficiency can lead to heart disease among other things (depression, certain cancers...) so it's worth doing!
> 
> I'm not optimistic re the graphs etc. My Grammar school wouldn't let me take maths O level (I passed the other 9 fine!) as they said it would be a waste of money! Lol.



Hi Liz,

You sound very motivated - great.I have heard about this deficiency - but more because it is thought that diabetic children are lacking it due to not being outside as often as they should be - but not sure how it would be tested. I always think that if you are eating a balanced diet then you should mostly be able to get the vitamins you need from your food - but I suppose it depends why there is a deficiency doesnt it. Anyway, do let us know when you get yourself sorted out with the data and we will try to help with those high's and low's if we can.Bev


----------



## Liz! (Feb 18, 2011)

Vitamin D cannot be taken in enough quantities from the diet, only a very small percentage of what you need is available from food. That's why exposure to the sun is important, it is stored and a good lot of sun in the summer should top you up - however most children don't go out enough and when they are they get covered in sunscreen. (Incidentally sun advice has changed because of this.) Added to this for some reason diabetes itself, not the lifestyle of diabetics, makes a deficiency more likely.

Once you are very deficient even vit D supplements in the form of vit pills (which should be Vit D3 plus K2) are not sufficient to top up your supplies, new guidelines have just been issued and I have been given Vit D capsules with a very high amount in.


----------



## declan88 (Mar 30, 2018)

bev said:


> Hi Liz,
> 
> You sound very motivated - great.I have heard about this deficiency - but more because it is thought that diabetic children are lacking it due to not being outside as often as they should be - but not sure how it would be tested. I always think that if you are eating a balanced diet then you should mostly be able to get the vitamins you need from your food - but I suppose it depends why there is a deficiency doesnt it. Anyway, do let us know when you get yourself sorted out with the data and we will try to help with those high's and low's if we can.Bev




I was diabetic from yr ... , well 11 months old.  My brother's and I used to play down the back by the river for hours almost every day until mum called dinner.  I was lucky though to have 2 older brothers.  But in all those years I can't remember having had may hypos.  Now and then I,d run in for a biscuit or something and out again.  Every one had to close their eyes so they wouldn't hear where I was hiding in hide and seek. ;-)


----------



## declan88 (Mar 30, 2018)

What r the symptoms of vit D deficiency?


----------



## Mark T (Mar 30, 2018)

declan88 said:


> What r the symptoms of vit D deficiency?


Aching muscles generally.


----------



## declan88 (Mar 30, 2018)

Mark T said:


> Aching muscles generally.


Thanks Mark.
Is that any particular time of day or through it?


----------



## Amigo (Mar 30, 2018)

declan88 said:


> What r the symptoms of vit D deficiency?



The symptoms of Vit D deficiency are more far reaching. This is a good explanatory article;

https://www.healthline.com/nutrition/vitamin-d-deficiency-symptoms


----------

