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kitten

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hi to you all 🙂
i went to the gp today to ask for a referall to another team and they said that they wouldn't refer me untill after i went to see my usual consultant on the 18th. i said that this was fair enough but could you look at my blood sugar book and make some suggestions then please. he looked and made no suggestions and said that i am supposed to self manage. I said that i know that i am supposed to self manage but i have been given no advice on this regieme. the advice that i have been given, honest to god is this : what you like and do what you want and we'll see what happens. I am sticking to a sensible diet but i have crazy blood sugars. The only other person that has explained things further to me is Monica speaking from her experince with her daughter 🙂 thank you so very very veyr much for this by the way. I think that the fact he will refer me after the 18th if im still not happy is good though but to be honest ive had a bit of a breakdown. because i simply can not do this anymore. yesterday i ate a tuna sandwich on wholegrain bread that had seeds in it and afterwards my blood sugars spiked up to 28.8 i was in a lesson at college at the time and i could not see straight at all. my eyes were so blurry that the numbers were jumping about all over the shop (it was an accounts class) and the tutor came over to try and speak to me and i couldnt get my words out properly and i felt very faint. this kind of a thing is happening very regularly now. and i cant take it anymore to be honest. sorry that this is such a rant. but i just thought that i should update you all and thank you for your support.
i would like to ask you all if i may for some help. regarding the NICE guidelines. i have read through them for myself and i don't seem to be able to find anywhere that your hba1c must get to 6.5% or you get taken off the pump. my hba1c has indeed decreased. notably this year alone going from a 10.9% in february to a 10.1% in june. Personally i feel that this is a significant improvement in the right direction but dont get me wrong im not trying to say that its briliant or anything. please comments peoples🙂 thank you all so very very much for everything,
lucy xxx
 
Can't offer any advice, but I hope you get things sorted out.
 
Right, now you've been told to selfmanage, I'll "play doctors" with you. What amount of units are you on? I'm guessing you're on Novomix30 (I'm sure you did say, but I can't remember). In my experience you should be on more units in the morning than in the evening. Spiking up to 28.8 by just eating a sandwich doesn't sound right. Carol has a sandwich, a yoghurt and a packet of crisps (like quavers) for lunch. Am also thinking, you could have gone hypo and not noticed? As you know you should have a snack inbetween the meals. I'm guessing you're skipping those if you're that high. How many blood tests are you doing? Sorry to be such a nosey parker, but I feel you are being let down badly and only want to help.

I've never read the NICE guidelines, so can't help with that. But it seems to me that your team simply think you didn't make enough effort to bring your HbA1C down. When we went to enquire about Carol getting a pump last week, the DSN said to her that they would take the pump off her again if she didn't make enough effort. And that's even before she has one!😱(IF she gets one) Anyway, I don't think you have to get down to 6.5% in such a short(6 months?) time, do you???? It sounds a bit unrealistic to me.
 
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Hi kitten. I definitely wouldn't ask a GP to help improve my blood sugar levels, they don't have a clue what to do. Do you have access to a Diabetes Specialist Nurse?

From the sounds of that spike you at least need to be put on MDI, if not back on that pump!
 
thanks so much to everyone for replaying.
Monica 🙂 I am on Novomix 30. currently 12 units in the morning and 18 units on the evening. I only know about having snacks because of you. The hospital told me that i could eat what i wanted when i wanted and when i said that i was having hypos mid morning they told me to reduce my insulin. but from reading your description on the other thread i see that a snack is going to be required. i have skipped them when i have been high. and i have no idea whatsoever how many g of carb is okay at each meal. I have never had set meals for a very very long time. I usually do around 14ish blood tests a day but it can be many more and would never be less than 10. your not being a nosey parker at all i cant tell you how much i appreciate your help 🙂
lucy xxx
 
The hospital is sooo wrong!!

As I explained in the other thread, this is a very regimented regime. You can't eat what you want when you want. That's for MDI. That is not how it works with Novomix30. We were actually told to have a piece of fruit for snack, but when I said Carol didn't eat fruit, she said to have the biscuits.

I have dug out all the hospital appointment letters to see what Carol was on.
I will write the numbers down for you, but bear in mind Carol was 10 when she started on this and 12 when we changed to first 3 injections and then onto MDI. In all the letters, Carol ALWAYS had more insulin in the morning than in the evening. She started with 12u in the morning and 5u in the evening. The last one said 27u in the morning and 13u in the evening, but by then Novomix stopped working for her and she had hypos in the morning despite having TWO snacks and if I reduced it, she was high in the evening. Her HbA1C at that time was 8.2%.

So you see, you need more insulin for during the day and less for the night. Not the other way round. Are your morning readings OK?

14 tests😱 I don't know what to say to that. I don't want to sound critisising, but isn't that way to many? I admit Carol doesn't test enough. And I know on a pump you need to do at least 6 - 8(so I've been told). The important ones are before breakfast, before dinner/tea and at bedtime ( I would have included the lunch ones, but our DSN said not to). We were never told to do any of the other ones, as you can't do anything about it anyway and you're just stressing yourself out. I'm deliberately not including the hypo ones.

Anyway, I'm not telling you what to do, as I'm not qualified to do so and I don't want to get into trouble if something happend and you said "Well, Monica said so". I hope you can draw your own conclusions from what I've written. If you do decide to increase your morning insulin, do it very slowly by 1u a time and wait for 3 days before you increase it again, if necessary (it takes about that time to see any improvement).

I hope this all helps you and I haven't been waffling on, telling you unimportant things.🙂
 
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Just read your message again.

Unfortunately, I can't tell you how many carbs is ok for each meal, as we were never told either. The only thing about carbs I know about are the snacks, simply because I looked on the packet. DSN only said to have 2 biscuits (meaning digestive or hobnobs, as they are high fibre).
 
Thank you so very very much for your advice and support 🙂
I was under the impression that this is a very regimented regieme in order for it to work properly. And lets be honest if you dont know how to use your regieme properly then it is going to fail isnt it. and also if it doesnt fit with your lifestyle it is going to fail. it really doesnt fit with shifts to be so regimented but please do not feel that i am trying to put you down at all. I'm honestly not i'm just saying that this doesnt really fit with my lifestyle in any way whatsoever to be honest. thanks so much for everything though. 🙂
 
kitten said:
Thank you so very very much for your advice and support 🙂
I was under the impression that this is a very regimented regieme in order for it to work properly. And lets be honest if you dont know how to use your regieme properly then it is going to fail isnt it. and also if it doesnt fit with your lifestyle it is going to fail. it really doesnt fit with shifts to be so regimented but please do not feel that i am trying to put you down at all. I'm honestly not i'm just saying that this doesnt really fit with my lifestyle in any way whatsoever to be honest. thanks so much for everything though. 🙂
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You are absolutely right. I can't fault you for failing at all. From what you've been saying you shouldn't be on it in the first place and your diabetic team is failing you by making you use Novomix30 and not listening to you when you say you work shifts. Novomix30 doesn't allow for flexiblity at all. Your team needs their heads banging together😡. I think Novomix30 is only good for children and adults, who have a regimented lifestyle anyway.
 
I don't know if it will help but Carly was on Narvomix twice a day for 1st 4 months, her level was up and down, mostly high so she is now on 4 injections a day narvorapid and levemir at bedtime with carb counting, it is a lot better (despite more hypos) I don't ask GP for any advice, only DSN. Good luck and don't give up 🙂
 
If you've had bad levels for a while then bringing your hba1c down slowly is absolutely the way to go. I brought mine down too quickly and as a result developed retinopathy in both eyes and I'm waiting for my 2nd vitrectomy to try and restore vision in my left eye now.

Also my hba1c on the pump hovers around 7%, it was higher (double figures) pre pump. My team are happy with that, though the new national target I believe is 6.5% so perhaps that's where that figure has come from? I think they get ??? if someone they treat hits the target!
 
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