Any advice please

Hi beth

It sounds as though you aren't actually adjusting your insulin according to your carbs that you are eating and your BG...

Can I ask if you only adjust your insulin to what your DSN says? As this is the impression that I get from your post...

With the regime you are on, to gain control you have to learn self managment, so that you know how to adjust your doses of insulin to suit what you are eating, activity/exercise levels ect... Bases of this is carb counting, finding out how much quick acting insulin is needed for 10g of carbs (as this ratio can differ at different times of the day)

Your levimer (background insulin) should cover only the glucose that the liver is dribbling into your system... So that if you decided not to eat, your blood glucose wouln't flutuate by +/- 2-3mmol/l by the hour... Some find splitting their Levimer into a Am&PM injection give them better control..

I would ask you team if you can attend a carb counting course such as DAFNE (this is the best) but some hospitals offer there own version of it... So that you can learn how to adjust insulin to suit your needs..

A couple of good books to invest in..

Gems carb counter or any carb counting book
Either
Think Like A Pancreas or Using Insulin, these are both written by diabetic specialist, I know that the Author of the later Walsh is himself a diabetic.. These will give you the low down on MDI (multi daily injection) combining it with carb counting and other factors that are required to take control..

Ask as many question here as well, and we try our best to explaine and help were we can

When you say the nurse changed your dose do you mean the novorapid or the levimir? You need to adjust the dose of the novorapid depending on what you eat if you don't already. Are your blood sugar levels high sometimes? I'm sure someone more knowledgable than me can suggest things to eat that would keep your blood sugar more level. Don't worry about criticising the nurse, if you are worried about your treatment say so. Maybe a different type of insulin would suit you better, have you spoken to the nurse about different types?

Whatever you do, don't feel bad. You don't sound all over the place, you sound like a sensible person who is trying to make sense of the incomplete information and advice you've been given. If someone else was telling me what insulin to use without reference to my daily needs, food intake and exercise, I would be having the same problems; anyone would. I adjust my insulin levels daily according to what is going on in my life and what I'm eating. I'd go nuts as well as hypo if I had to keep the exact same units for 3 weeks at a time.
I would agree with jopar that the first thing to do is ask if they can get you on a DAFNE course or similar (in my area they are called INSIGHT courses, and I've heard good things about them too).
I'd also ask for a blood test to find out if your pancreas is still producing insulin. If it is doing so irregularly that might also be making a difference.

Sounds like a good approach - keep a diary of what carbs you eat, and insulin, and see if you can spot patterns. Try reducing insulin levels where you can see that it's clearly over the top for the amount you are eating. Have confidence in experimenting, and don't forget that NOBODY gets it 100% right all the time. It's an art, not a science.
You may learn what's right for your body without having to go on any courses at all.