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Ketones

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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.
 
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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.
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Oh that's not much dif than me then Liz, but I eat carbs in moderation
and have steroids for breakfast.
 
Steroids for breakfast? Pourquoi?
 
Aaaah. So you think that 12u basal is normal?
 
Liz! said:
Aaaah. So you think that 12u basal is normal?
Click to expand...

Everyone is dif Liz. Some use more some use less but it not an abnormal amount that's for sure. :D
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.
 
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!
 
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.
 
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.

🙂
 
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!
 
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!
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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.
 
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!
 
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!
Click to expand...

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
 
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!
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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.
 
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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.
 
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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.
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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
 
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.
 
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