• Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
  • We seem to be having technical difficulties with new user accounts. If you are trying to register please check your Spam or Junk folder for your confirmation email. If you still haven't received a confirmation email, please reach out to our support inbox: support.forum@diabetes.org.uk

Quick question

Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.

Doddy

Well-Known Member
Relationship to Diabetes
Type 1.5 LADA
I know everyone is different, but is there an average of size of dose for insulin?
My GP has put me on Novomix 30, and started me on 6u twice a day. However, this has done absolutely nothing (what a surprise!), and I was wondering if there was an average dose you would expect to be on in the end?
 
I suspect there isn't a quick answer as everyone has different needs. I did find this interesting document, which may answer others questions of why did I get prescribed insulin X: http://www.westessexpct.nhs.uk/pubs/pdfs/guidelinesinsulin.pdf
This says starting does of 10-12 at breakfast and 8-10 with evening meal.

Looks like your GP has put you on a starting dose to see how you will fare. I presume you will be told to adjust it up further on (this is trying to avoid hypos). What you will need will depend on what you eat. hopefully someone else who is on it will post a better reply.
 
That link was very useful thankyou 🙂
 
Err, how long till you go back to the docs? I mean you could of course be completely renegade and increase it yourself but I don't recommend that without medical supervision, but on the other hand I would have expected it to have had some effect by now, however small. But how long has it been?

I know for T1's there's a calculation they can do based on body weight but T1.5 is more unpredictable because nobody knows exactly what your own pancreas is producing, or not. So I suppose they take it even more gently and that sounds entirely sensible.

We've probably had a blow by blow account elsewhere so forgive me if we have - but are they even 100% certain you are T1.5?
 
When my son was diagnosed as type 1 18 months ago aged almost 16 and 6'2" tall, the hospital had some formula they used to calculate a starting dose for his insulin. He was started on the basal bolus regime though. Their formula was something like (can't remember exact figures) 0.7u units per kg of body weight per 24 hours. It then worked out something like 56u of insulin per 24 hours, so, they split it in half, gave half as the basal insulin (Lantus) at bedtime, then split the remaining 50% into 3 equal doses for pre-meal bolus injections (Novorapid) - would have been probably 7 units per meal as it doesn't divide exactly. That was just for a few days. They then quickly taught us about carb counting, so kept his basal at 28 units but we then counted carbs and calculated his insulin needs for meals as 1u per 10g of carbs. His largest carb meal would most days be his evening meal.

Of course, over the first few weeks, his levels came down, but were a bit erratic as we got the hang of things. They were most interested in his waking levels, and when we had a run of figures regularly above the recommended fasting level, his nurse upped his Lantus by a unit. After a week or two if things started creeping up again, she upped it again. This carried on until he got most readings within range. He did settle I think on 30 units of basal (Lantus) at night, then carb counting at mealtimes for his Novorapid.

Of course a few months in, he started having a few hypos. After a few in one week I rang his nurse, gave her a run down of his figures, so she then started reducing his Lantus by a unit at a time.

This, as you will learn, is how it goes on. Things change, for no apparent reason, so just as you think you have the hang of it and things are going well, something makes it all go belly up!

I assumed, from the way they calculated his starting doses, that as he is a big lad he would be on significantly more insulin than someone smaller. I have a friend with a T1 son who is 18 months younger, diagnosed as a 3 year old, and significantly smaller than my son, but he is on larger doses than my son.

So, in answer to your original question, I don't think there is anything like an 'average' dose, people's needs seem to vary drastically. They have to pick a figure from somewhere to start you on, and that's just the way my son's team did it. It's just finding what is working for you. It may take a little time to tweak things more satisfactorily.

My son is now on a right comibination of different insulins due to his non-compliance, but as his mother I feel the basal bolus worked so well, so as others have said, I would in your position ask if you could be changed. My son is currently on one mixed one in the mornings and I don't see things settling properly at all on that. It worked so much better on the Lantus/Novorapid regime and you could react to changes quickly.

Of course this is all about T1, and I appreciate your case is slightly different. Glad to hear you are getting the hang of injecting though, well done.

Tina
 
I also forgot to ask as well, are you on tablets too? Could there be some serious insulin resistance going on for which you would still need tablets too?

Just a thought.
 
My GP has been very good in that I can see her when I need...she will squeee me in, so i can't complain on that score 🙂
I only started on Wednesday but I would have thought I would have seen some sort of difference now.
I have had a GAD test, just waiting on the results. My GP did explain why she thinks it is T1/1.5 rather than 2, but I can't remember what she said..it's probably in a old post somewhere!

Tina....I am wondering if my GP will change me to the kind of regime your son in on...did it take long to get to the desired levels?
I am used to having to titrate meds till they work, but it's getting frustrating with this because I can see it isn't working :(

I am still taking oral meds too...Glimipiride and Metformin, but nothing is having any effect! Its beginning to worry my now, but I have a feeling my GP is going to be squeezing me in tomorrow!
 
Well I think Glimipride helps you secrete more insulin and metformin is sposed to help reduce insulin resistance. So there you are apparently taking stuff to make you make more natural insulin and adding more insulin by injection and also apparently addressing insulin resistance and your BG stays the same ....

It sounds VERY much to me like your Beta Cells may have shuffled off this mortal coil ..... or have gone on strike. ie hang on, no he isn't, he's T1.

Wish I could nip round and give you an illegal jab of Novorapid to see if that works .... :D
 
Well I think Glimipride helps you secrete more insulin and metformin is sposed to help reduce insulin resistance. So there you are apparently taking stuff to make you make more natural insulin and adding more insulin by injection and also apparently addressing insulin resistance and your BG stays the same ....

It sounds VERY much to me like your Beta Cells may have shuffled off this mortal coil ..... or have gone on strike. ie hang on, no he isn't, he's T1.

Wish I could nip round and give you an illegal jab of Novorapid to see if that works .... :D

Lol wouldnt that be good! The longer this goes on the more i think there something more going on.
If the beta cells are not doing whatever it is they should, what does this mean? That inwil just need more insulin to do the job?
 
I have just found out my son's first ever diary and can tell you from that by day 8 EVERY reading was in single figures. On admission to hospital he was getting figures in the mid 20's. Even on his 2nd morning he woke to a 7.7, though his figures did remain pretty erratic the first few days, lots of readings in the teens and as it was Christmas/New Year (and his birthday) lots of extra food and goodies around but he started carb counting after just a few days and calculated his Novorapid for that and things really did improve dramatically. I actually wish he would go back on Novorapid, I felt it worked so well when he was doing it properly, I am not at all happy on this mixed insulin he is currently using, but as he is 17 it's all his choice, not ours.

How clued up is your GP? Could you ask for a referral to an Endocrinologist? Your GP may be excellent. Ours is as a GP, but diabetes-wise - not a clue. He has given us scary 'bum' advice so I'm afraid I take everything he advises with a pinch of salt and speak to my son's DSN or consultant for proper advice. Just beware, your GP, though I'm sure very good generally, may not be at all clued up on T1 diabetes, if it does turn out to be that. Statistically each GP probably only has 3 or 4 T1's on their books anyway, and a good percentage of those children.

I do hope things start improving soon and you get some answers. It's very frustrating for you I am sure.
 
SO do you think the mixed insulin doesn't work quite so well as the rapid/slow acting combination? Did the hosp initially do anything different to make the figures low?
My friend (who is t1) has said to try and see if I can go on the rapid/slow rather than the mix.

My GP does have an interest in diabetes, and when I originally booked the appointment for the intial screening I was told she was the one to see. So far, I feel she has been very good. She has done a GAD test, and I do feel she is trying to get get me sorted. Obviously, she probably isn't as good as a specialist at a hosp, and i think she said the other day she would refer me to the hosp.

It is very frustrating...you must feel the same frustration, but on a different level. I just wish there was a way to make these things work, and not have to play with different levels etc....
 
I personally don't think the mixed insulins work at all well, and from all I have learned from on here, they are the old way of doing things, the rapid/slow (basal/bolus) is the newer regime preferred by most specialists these days.

Certainly for my son that combination worked. The only reason he has gone onto mixed is because he has been rebelling, not wanting to inject at school (he's 17) so he kept skipping his lunchtime dose. In an attempt to get something sorted for him and to take that into account, they came up with this idea of a mixed insulin in the mornings. The problem is, with that you take a fixed dose, and though he hasn't been told to, I gather the idea is you should eat a set amount of carbs at set intervals on that.

With the rapid acting insulin, you can essentially eat what you like when you like, but calculate the carbs in advance and adjust your dose accordingly. Also, if you test pre-meal and you are higher than you should be, you can add a unit or two on (instructions given by your team) to help bring you down post meal to a better level. It really worked well for my son. I grant you, I was pretty fanatical about weighing all his carbs (rice, potatoes, pasta etc) and made a chart in my kitchen of carb values in all the common food we eat - fruit, bread, crackers etc, so I had a quick reference guide. It quickly became second nature and worked very well.

As I said earlier, it was only when he suddenly felt uncomfortable dealing with it at school and started skipping injections that things went to pot so they changed him to a mixed one in the mornings. Things are far from great, but it's not just down to the mixed one, he is skipping other injections pretty regularly too and not testing AT ALL.

As you have the maturity to deal with it properly, IF you are type 1, it really should work well for you and work pretty quickly once doses are sorted out. It's getting the basal (slow acting) bit sorted out really, then the meal time doses seem to keep things steady. I really would push for that if at all possible. A specialist really would put you on the right track.
 
Doddy

Some of us are so crusty that they hadn't invented the insulins in use today! So we were stuck with what there was, which was mixed insulin basically. You had a set amount each day, calculated to match YOU and your normal diet, as long as it was judged to be nutritionally and calorifically correct and mine was, but you had to spread the carbohydrates out across the day at set times, so Xgrams for breakfast at 7.30am, X grams mid morning snack at 10.30am, X grams at lunch at 12.30 pm, X grams mid-afternoon snack, X grams for dinner, X grams mid- evening snack.

My mealtimes didn't match my life. eg Dinner was supposed to be at 6pm - when I was still on the ruddy train coming home.

It was impossibly restrictive, but we lived with it as no choice.

On a basal/bolus regime, you take your long acting and then only take fast acting if or when you decide to eat carbs. And it isn't X grams religiously. If you want to eat 10g of carb or 100g of carb you can - just adjust your dose of fast acting accordingly. And no snacks in between meal - unless of course you fancy a snack, in which case have another jab for the carbs in it. But it isn't essential to feed the insulin, like it would have been with a correctly titrated dose of mixed insulin.

Your dose isn't correctly titrated, we know that because your BG is pants. If we said increase it, then you'd be on the cycle of feed the insulin don't feed the insulin that we were all so eternally grateful to get off in the first place - yeah even though it was many more jabs every day - so what - if it means you can lead a normal life?

The whole concept of mixed insulin is potty for a T1 in the first place. What's the ratio of what you are on? usually something like 70% long acting and 30% fast acting. Hang on, I know exactly what my split is because I'm on a pump and you find out pdq on a pump. I have just under 10u basal and about 10/12u of bolus. So at best that's 50/50 and you can't do that with mixed cos there ain't a 50/50 mixed. And NOBODY hardly these days knows the Black Art of titrating it properly, because all the expert doctors have at least retired if not died and there's nobody left to teach it.

It makes me so ANGRY that T1s (or folk displaying more T1 symptoms than T2 and you appear to be) are put on it in the first place, knowing that. (Conversely it can work quite well for T2's who are still producing some insulin, but just not enough of it)

Yes if your beta cells have died, then you produce zilcho insulin just like me. That's what the C-peptide reading tells you. The lower that is, the lower your own insulin production. The injected insulin doesn't contain C-pep so any amount of it won't skew the result. I think the GAD65 antibdies are basically, what attack your beta-cells so if you have got loads of em that means your beta-cells are at death's door. That test can traditionally only be carried out for so long after onset because it's always been said that someone like me wouldn't have them since all my beta cells got killed off approx 40 years ago. However recent research into summat else diabetic, showed that some T1's still had em after 28 years! That was the longest any on that test had had diabetes, so for all I know I could have some still. Furthermore many T1s still have measurable C-peptide, this one is a humungous lifetime study at the Joslin institute in Boston where they have loads of T1's DX in childhood aged up to 80+ still undergoing regular testing and they think the C-pep might be one of the things that stops em getting dire complications, whereas everyone expected all their legs would have dropped off etc by now. But they haven't. Why? (Search for posts by Richard157 for loads of info about that if you want. He's one of em!)

I've digressed a bit, sorry. But hopefully a nice full answer for you Doddy!
 
Your reply gave me good answers thankyou trophywench!

I am wondering if the mixed, being quite fixed in its abilities (if that makes sense) will suit...I don't eat at regular times.
I am slowly losing the will to carry on with all this....
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Back
Top