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Help - what am I doing wrong

Molewitters

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23
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Devon
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Hurting animals and NHS/PCT for not having enough funding to help.
Type 1 Brittle 28 years 3 half on pump Novarapid hypo awareness starts 1.8
Advice from Doctor 4 June - lower basals stabalise at higher bgs then awareness will come back and then begin to stabalise at lower bgs. This has kinda worked as hypo awareness has risen to 2.4 getting my bgs up has been a bit of a struggle as I have ended up peaking more often than not.

Yesterday I had 4 hypos - 3.3 @ 6am 3.3 @ 12.45 3.6 @ 16.00 and 2.2 @ 22.00pm levels in between were between 6 and 8.9

Woke up this morning on 4.1 had breakfast, usual dose of insulin now @ 9am I am 3.7

I can't seem to stop hypoing

In the las three days I have had 8 hypos, not including yesterday.

I am treating hypos with Ribena at the moment 21 grams or lucozade or chocolate when I can't find the liquid or glucose gel but that doesn't seem to work and I find I have to have nearly 6 of them (60g carbs) before I move.

The only thing I can think of doing is to drop all of the basals by 50% to get out of this cycle because nothing else seems to be working.

I have thought of calling the clinic but after my last appointment I have lost faith in their help and the promise of a cgm seems to have disappeared for me.

Has this sort of thing happened to anyone else?
What's the best thing to do because I can't cope with having all of these hypos anymore

What am I doing wrong?
 
Molewitters,

Sorry I've re-written my reply. I see you mention that you have brittle diabetes, which my understanding of is unstable diabetes due to other medical issues involved in insulin/carbohydrate absorption, so it is difficult for me to give a answer to your question.

The usual route when experiencing frequent hypos is to look at your insulin/carb ratio, have you made adjustment to your meal-time ratio's, either reducing your insulin or increasing your carb intake, this would normally be enough to reduce hypo's. I don't know if you have done a DAFNE course already, but if not it may be worth your while making enquiries with your dsn about enrolling on a course, many people, including myself have found these type of carb counting courses to be of immense benefit in reducing hypo/hyper episodes, and tightening control overall. The nurses that run these courses are all highly qualified diabetes specialists, and will have no doubt taught people like yourself with brittle diabetes.

Best wishes

Nigel
 
Hi Nigel

You are correct about the absorption; usually I can control it for a while then everything goes abit awol then it settles down again. It's been a difficult 6 months so far this year but seems to be getting worse at the moment.

My Diabetic Nurse has put me forward for DAFNE training but I am still waiting and hoping on that score; she only put me forward on 4 June when I asked her again. I am also waiting to borrow a CGM so that I can hopefully make sense of the mess I am in at the moment. I do count carbs and no I haven't changed the ratio's at all, changing them always makes me nervous because I don't completely understand them. They have remained the same for over a year now; last time they were changed by the doctor. Neither have I changed my diet.

I will have a go at changing them and see what happens. I can live in hope.
 
Molewitters

If dropping yr basals right down doesnt help sort you out, then ask consultant to possibly test you for Addisons. Addisons is known for causing hypos. The fact that you are needing so much sugary stuff to get you up again is not too good.

Regarding hypo awareness, I think it would take a lot more than just a couple of months of running higher bg to restore things. On consultant's orders, I've been deliberately running my levels higher and have now gone from a1c of 6.7 to 7.4. Now that I've got a pump I am still trying to keep myself if I can on a bg level of 7 every 3hrs. It's a bit challenging but with dabbling with the settings, I'm starting to get there. At the moment my awareness is coming on when my bg is about just below 4.
 
Hi Ihs

Thanks for your reply. My doctor said it would take about four weeks for hypo awareness to return not weeks but in retrospect it has taken them nearly 6 months before they suggested running higher. My a1c was 7.7 in March.

I have set a temprary 24 hour basal which has reduced my basals down to 70% of what they normally are and so far it seems to be working. I am doing hourly tests and so far since my hypo at 9am I have been happily running between 6-7.

The big test will be this afternoon after I have had lunch as I think that will highlight how much I need to adjust my meal bolus's

I have never heard of Addisons but I will bear it in mind if the hypos continue. The clinic don't want me back until 17 August but if I need to I will start screaming and shouting for attention from them as that seems to be the only way to get help from them sometimes.
 
Mole,

Don't also forget that when you are having frequent hypo's like you are having at present, the body becomes use to these lower levels and hence your hypo awareness symptom's become weaker or disappear all-together, so the less frequent your have hypo's, the sooner your hypo awareness will return. I've never lost my hypo awareness completely, but a few years back I did go through a phase where I was having hypo's daily and my awareness did become weaker.

Hopefully the DAFNE course will teach you new skills to avoid these hypo's on a daily bases, and improve your diabetes control. Good luck!

Nigel
 
Hi Nigel

I know all about the loss of hypo awareness as I've had none for the last six months. I don't want to loose what little awareness I have only just gained back again, which is why I asked for help.

I only just have some back and I don't want the threshold to drop back down to 1.8 or none at all. I already test on a two to three hour basis when awake already and I don't want to do more because I have no awareness whatsoever.

Sorry, I don't mean to rant. Anyway my bgs have climbed to 10.4 before lunch so I doubt there will be a hypo this afternoon.

Thanks for the advice.
 
I can't see any mention of a rant in your posts Molewitters, the forum is here to learn, share experiences and to ask for advice, goodness knows I have had a few outpourings since joining the forum, but the good thing is that we can all relate to one another's problems, either being in the same boat at present or gone through the same predicament at some time in our lives.

Nigel
 
Hi Nigel

You didn't see the bits I deleted :lol:

Had to stop the basals being reduced as I climbed up to 13 and started snapping at everyone here in the office.

Now unsure about the meal bolus because of the reduction to the basals. Back to 7.1 now and feel much better except for the exhausion from so many hypos yesterday. I think one a day is far better than four. None would be brilliant but any improvement is great at the moment.

Hopefully no more tonight and then I will permanently reduce my morning basals but I will keep an eye on the meal bolus. If I can just go a couple of days without hypos then I know I have got it right again and then I'll start to feel better.

Thanks for your words.

Lisa
 
Mole

I've had a quick read through the thread...

I know the veo has a wizard that tells you how much insulin to bolus according to your BG, are you quite sure that the insulin duration premineters are set correctly and not slightly out?

How often are you doing fasting test to check your basal profile is set correctly?

I find that I have to tweak my basal profile/s every so often as over time my needs can change slightly..

One of the reasons why you find that you taking a lot of fast acting carbs on board, if you basal profile is too much you could have an overload of insulin hanging around... You really need to look at your basal settings..

I would suggest that you obtain a book called 'Pumping Insulin' 4th addition is the one for the smart pumps, this give all the information required to understand your data so that you can work out the perimeters for your different wizards available on the insulin pump, as well has good information on carb counting, carb-insulin ratio working out etc... All the in's and out's of getting the best out of your insulin pump...

As looking what you've wrote it seems that your clinic is controling your pump not you..

As to Addison's being your problem I would be surprised if it was, as in general you could munch 500g of carbs with out having much of an effect! But only your medical team can rule this possibility out so you will need to speak to them concerning this...
 
Hi Jopur

Thanks for the advice on that. I will get that book.

The last set of fasting I did was two weeks ago and during the time I didn't have much movement. The doctor I saw, once I had persuaded her to look at them said they were fine and I should carry on.

Had another around at 18:30 last night 3.4 Went to bed on 6.7 and woke up on 3.8 - at least I have started to have higher hypos. Treated it with Ribena, had a shower and had breakfast by then 8.8 so took normal bolus. Now 5.9 and my head is splitting, I have very low energy levels.

As for basal settings that gets changed everytime I go to the clinic. I get told off for having more than four basal rates then the next time I go I'm told I don't have enough. I have seven at the moment and have been on them since 4 June when they lowered my basals to get me to rise. The idea being that I would shoot up and then we could stabalise me at that. I did rise slightly but not by much.

From what you have said it can't be Addisons - think I would feel very ill if I had to have 500g, having to eat/drink 100g makes me feel sick afterwards. Good to know it can't be that.

I've dropped my night basals by 0.25 this morning and have lowered my basals for this afternoon by 0.30 I will do some more fasting this afternoon as I have just finished a cup of tea.

One thing I asked the doctor was about changing the times I eat but she said I would still drop. But I know that when I ate my lunch at 10:30am instead of 12:45pm when I did my last fast my reading for the afternoon moved by 0.5 Before that and afterward my bgs move alot around 16:00 and 18:30 either up or down.

Has this ever happened to you? or have you heard of it? If I start eating at different times will this help?
 
There’s no limits with the expectation of how many times the software on the pump allows you to change it (mine is once an hour so could have 24 different settings in that period) I’ve actually got 15 changes on my profile over a 24 hour period, that matches the rise and fall of what coming off my liver and my general energy output at any one time...

With this I don’t have to eat unless I want too, if I’m not going to eat and going to do something that increases my level of activity for example when I take my 2 dogs out (walk/exercise with training included) I will check my BG about an hour before, I will set a TBR according to my BG level, that will prevent me from hypo while I’m out with the dogs...
Another consideration is how you are using your different bolus’s to cover your food intake..
Using the right bolus could make all the difference to whether you end up hypo.. My most frequent used bolus is my Multi-wave (might be called something different with your pump) followed by my square bolus.. These two suits better to how my body adsorbs any carbs I eat...
If you are finding that your basal is holding you steady, and then it’s the bolus I would tend to look at more closely...

Look at what you are eating carb wise, and type (as in GI index) what bolus you are using, if and when you have a hypo, also your level of activity this might give a indicator what going wrong and how to adjust better
 
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