How long until MDI?

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DJArmstrong

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Type 1
Dear all, am a 32 yr old woman and have been newly diagnosed with Type 1 diabetes at beginning of October, so literally been injecting twice a day for barely over a week. I have been doing as much research as possible about the condition and want to get to decent bg as soon as poss. they are currently between 10 and 15 mmol on average. My nurse says i am to stay on the same regime until next week and then review on a weekly basis. I have been given no more info than this as they seem to be worried about giving me to much info - but i am the kind of person that likes to know! Does anyone have any idea whether i should be pushing right now to get on a daphne course or whether i should just sit back and wait for the diabetic nurse to decide? Am i being treated like a 'lowest common denominator' person where it is nhs policy to treat newly diagnosed people as if they cannot handle information? Am i being impatient - should i be waiting weeks/months for healthy blood sugars? Am really interested in other peoples experiences when newly diagnosed.
 
Hi DJ, welcome to the forum 🙂 Sorry you've had to join the club, but you'll find lots of friendly support here to help you through things. It will take a while for you to get used to things and there is a lot of information to take in, so try not to get overwhelmed by it all. They do try not to overload you at the start, but clearly you are a person who likes to be well-informed! You should probably ask about education courses, but you may have to wait a few months before you get to go on one as they like you to have 'settled down' first, plus the courses are often booked up well in advance.

Your numbers will start to reduce as your nurse alters your doses based on your readings - they don't like you going too low right from the start,so generally start you off slowly. Hopefully, they will soon be changing you from a two a day injection regime to something called 'basal/bolus' or 'MDI' (Multiple Daily Injections). With this you will take a slowacting insulin once a day, and a fast-acting insulin each time you eat a meal. You alter the dose based on the amount of carbohydrate in each meal. Although this means more injections it is much more flexible than the 2 injection regime, meaning you can eat what you want, when you want and have greater control over your levels. I started on this regime when diagnosed and find it pretty straightforward, although it did take a few months for me to build up experience about all the myriad ways my levels might be affected by food, exercise, weather, sleep - and so on!

I would highly recommend getting a copy of Type 1 Diabetes in Children, Adolescents and Young People by Ragnar Hanas, an excellent book covering all aspects of living with Type 1 and very clearly written and easy to use as a reference. You can, of course, ask us any questions you may have - nothing is 'silly', so ask away if it is confusing or bothering you!

edit: Should have read the title of your post properly - I see you already know what MDI is!
 
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Some people prefer to wait until their sugars have settled a bit before getting really stuck in to carb counting etc, but when my son was diagnosed I felt like you and wanted to get to grips with it all as fast as possible.
The sticky at the top of this section is really helpful, but if you don't have time to look at all the resources I'd go for these two books first:

Type 1 Diabetes in Children Adolescents by Ragnar Hanas (excellent book for all ages despite title)
Carbs & Cals: A Visual Guide to Carbohydrate & Calorie Counting for People with Diabetes (also available as an app)
... and this short online course:
www.bdec-e-learning.com

I would also push to go on MDI if you can. We weren't offered anything else; quite surprised people are still being recommended it really, unless there's a good reason for wanting to avoid injections at lunchtime (eg at school or something).
Best wishes
Catherine
 
Hi and welcome to the forum. I can only speak about my son's experience. He was diagnosed at the age of 15 (days short of turning 16) so of course was seen by a children's team. Whether that makes a difference or not I don't know (but i suspect it does) and he was put straight on MDI - the basal bolus regime as it's known. Basal insulin (Lantus) at bedtime and bolus insulin (Novorapid) with each meal.

The first few days they could only I suppose guess at the correct dose to give him, so they had some scientific calculation - body weight in kg x some figure (0.something-or-other) and that gave a figure - in his case 54. They then divided that by 2, gave half the amount (27) as basal insulin, then split the remaining 27 by 3, to give one dose with each main meal, so 7 units at breakfast, 7 with lunch and 7 with dinner. This was only for a few days because my son's situation was further complicated as his diagnosis came during the Christmas/New Year period so there were only skeleton staff on duty.

As soon as work went back to normal in the New Year, we had a visit from the dietician and she taught us carb counting. We then got to adjust his insulin each meal according to how many carbs he was eating. Very very quickly his levels came down into range. I have just found his old diary out and he started carb counting around day 7, and by day 10 almost every BG reading was in the 4-7 range.

Others will tell you the twice a day regime is very old fashioned and very unsatisfactory. I am amazed people still get put on that at the start, but maybe it's all down to costs and resources and they can't be bothered to spend the time/money educating adults the same was as they do children and their families. Seems utterly batty to me. At the end of the day, the better your control, the better things are for you in the long run, and you will feel so much better.

If you have the confidence to push, I really would ask to be changed onto the MDI basal bolus regime. Ask to see a hospital consultant if necessary and don't think that your GP or practice nurse really have that much training/information about type 1 diabetes. The ignorance is shocking.

Good luck. Hope you manage to persuade your team to change you over to something more flexible.
 
Wow thanks for getting back to me so quickly! Makes me feel less alone 🙂 Will defo look at getting that book - was put off by the title but so many have recommended it now! Quick question: is it compulsory to attend a daphne course before going onto carbcounting and MDI? Or is a daphne course just a way of making you better at MDI after commencing it?
 
We -well my son aged 15 -16 now went straight on to MDI - We were taught to carb count from day 1.We had input/ home visits from the nurses and dietician-he was not hospitalised on diagnosis- so we havnt been on any courses- and some meals took longer to work out than others but maybe my maths has improved!!! along the way, welcome to our forum too:D
 
Not compulsory at all. I've never been on DAFNE, but have been carb counting since diagnosis 20-odd years ago :D

If you are interested there's a good online carb counting course that you can do free of charge via BDEC (Bournemouth) here: http://www.bdec-e-learning.com/

I would also suggest you move to MDI, but one reason your team may have for their reticence is that in the early months/years after dx your pancreas may still be sputtering out bits of insulin here and there (often called the 'honeymoon period') which can make doses/ratios a bit more of a movable feast for a while. Having said that I spend most of my time chasing the moving goalposts and I've been playing this game for years!
 
Right LOL

They probably do want to get your BG down a bit slower than if you had been suddenly in A&E with DKA, whereupon they would have slapped you on a drip and got your BG down immediately, in which case there isn't much point in subsequently ***** footing round with it and watching you creep up higher again.

The reason for this thinking IMHO might be because you are more likely to have horrible side effects from abruptly reducing BG as an adult not already 'in extremis' - ie DKA.

Please tell me - this IS the nurse at the hospital Diabetes clinic? - NOT the nurse at your GP's surgery?

They don't usually send you on DAFNE for about a year. You may or may not be aware that most newly diagnosed people have what is known as a 'honeymoon' period where their pancreas although it can't cope adequately 100%, does still produce insulin itself in fits and bursts. That could be a week or it could be a year. Can't tell !

Until they are pretty sure you are stable, there's no point in going into the minutiae of trying to nail all your ratios down - because you might do it today and tomorrow that will be different and the day after it will change again, etc. Ratios still change from time to time, so don't think they don't - but not half as much as they fluctuate in the first however long.

You need to have some sort of intuition about your D and your bodily functions* and activity levels, before embarking on a (very expensive in the case of DAFNE itself, but in any event always costly) course in which both the HCPs and the patients, need to all invest a whole week of intense concentration.

* eg you may quite likely find at certain times of the month (!) you need more insulin ..... everyone is different ..... you would need to know that (ie what your own body does) first in order to make allowances for it !

And you will get a lot more out of it, even having done the on-line course, once you have your head round it all before you start.

At that stage, the HCPs should be 'preaching to the converted' - which is a hell of a lot easier than with a roomful of complete rookies!
 
Hi I was diagnosed in July this year. I was put on insultard 2 injections a day. From this Friday I am going onto mdi. To be honest I pushed for this. They said I could have gone on to this straight away but was in too much of a state at the time and you hear 'do you want 2 or 4 injections' you are gonna say 2 arnt you? After coming on this web site I decided I wanted to do the carb counting thing and the DSN was happy with this so I could get used to it beofre I go Thailand in April. There does seem to be a pattern of the nurses not wanting to 'flood' your brain with info however I am like you and would rather know. I read some books and already knew most things before they went through it all last week. I think if you can show them that you understand am sure they would be quite happy to swap you over soon. 🙂
 
Thanks for the info trophywench - i never new that my pancreas might be randomly contributing. I was diagnosed at my local surgery, sent straightaway to A & E where i was tested positive for ketones, but was not in DKA thankfully. I was told i was put on twice daily injections because i was 'needle phobic' based on the fact i said i didn't like needles (who does??!) i wasn't given a chance to argue/was non the wiser anyway and it took 2 days in hospital just to see a diabetic nurse to show me how to use a needle. My care at the moment is my GP diabetic nurse - but i found her to be better than the hospital nurse anyway - more knowledgable, more time to talk etc.

Am worried about low BG in short term, but am more worried about long term effects of continued unhealthily high BG.
 
Am i being treated like a 'lowest common denominator' person where it is nhs policy to treat newly diagnosed people as if they cannot handle information? Am i being impatient - should i be waiting weeks/months for healthy blood sugars? Am really interested in other peoples experiences when newly diagnosed.
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Yes and no. There is a good reason why doctors tend to prefer to put the newly dxed on mix insulins in the first instance - patient compliance. For many people, it's a heck of a leap from eating what you like and not giving it a second thought, to suddenly having to test your blood sugar and inject regularly. It depends on the person but I think many people would balk at the idea of having to inject at least 4 times a day from the off.

So that's the lowest common denominator side. But there's also some good, positive reasons. Firstly, burnout. When people do get a life-changing diagnosis like T1, some people can be very admirable in their 'new broom' approach. But doctors will have seen such people before and know that a proportion of these proactive patients will hit burnout very quickly and then 'rebel', hard. They'll get depressed and fed up and generally non-compliant as the reality of changing their life sinks in. Perhaps you're not this kind of person, but it's very hard to predict who'll sink and who'll swim - your care team is doing its part to ensure you aren't put under additional pressure which could really backfire on you. Then the second most practical reason is that it's a lot easier to muck things up on MDI. Because MDI offers you far more control over your blood sugar, it means you've a greater chance of over- or under-doing it. Think of it like driving and steering. Mix insulins are like pootling along at 30mph, MDI is like bombing it down the motorway. When you steer at a slow speed, you'll only swerve off slightly. Oversteer at 70 and you could easily find yourself in the central reservation, so to speak.

However...that should not stop you from pushing your care team to give you what you need. If you're prepared to be a highly motivated and informed patient, your care team is likely to reciprocate.

You also asked for other people's experiences - mine was as a 14-year-old in 1998 so take it for what it's worth, but I was on mix insulins for a year before being moved to MDI. I can't really recall what my BGs were like (I think I had A1cs in the high 7s) but at that time I understood very little - I didn't understand the relationship between carbs and glucose (although I knew big meals needed more insulin), I thought fruit magically didn't affect your blood sugar because the sugar was 'natural' and I didn't understand the role of insulin beyond controlling blood sugar. I also had never even imagined of MDI until my DSN put me onto it, which came about as a result of my control getting worse on two injections. I simply wasn't given enough information to make informed choices in my first year and I would definitely do things differently if I had the chance to again. You've got that chance - take it!
 
Hi and welcome to the forum.

I only started on insulin in April and went straight to MDI, though I started only with background/Basel insulin for the first couple of weeks and then a fixed dose of rapid/bolus insulin if I was having carbs for dinner. My DSN talked about the options and recommended MDI for me, mainly because of my lack of routine, I often skip a meal if I'm stuck in meetings or running late, MDI allows me to do that and keep stable BG's.

A carb counting course has been mentioned but I'm in no rush right now, I've taught myself what I know today (with the help of the guys and gals here (and the bdec site mentioned earlier)) and I'm fairly happy with progress to date, maybe one day!

What I've learnt is this is YOUR diabetes and YOUR treatment, you've made an effort to learn about the treatment regimes and your care team should work with you to find the best treatment. They should be encouraged that you've been doing research, it shows a level of understanding and commitment. Hope it all works out well for you, soon.
 
This is such an ace forum! 🙂) have got more of an idea of where i am now and will be looking at that online course about carb counting to give me an idea what it might be like to have MDI. Thankyou all for taking the time to reply!!
 
Definitely worth learning carb counting - I remember deciding for myself (definitely not mentioned by diabetes clinic staff) to start reading CHO content of foods. I was diagnosed in mid 1990s, aged 30 years and intitially put on bimodal, not knowing there was any such thing as basal bolus / MDI, until the mother (pharmacist in Tasmania) of a friend of mine, sent me a phocopied article about it, from an Australian pharmacy journal. I took the article to the hospital clinic and said I thought it would suit me better, and they immediately agreed, after about 4 months on bimodal, during which I struggled to see the point of living - not depressed, just so restricted and frustrated.

Although, particularly if you get type 1 diabetes as an adult, when it tends to develop more slowly than as a child, honeymoon period of irregular insulin production by spluttering pancreas goes on for at least a few months, even over a year, balancing insulin to food intake, activity levels etc is more difficult, it's better than merely guessing.

Still haven't been offered DAFNE or any other course, but quite honestly, too busy to consider these days, and have learned a lot from MAD (Mountains for Active Diabetics), plus BDEC online course and a bit from this forum, which started long after MAD email list.
 
Hi DJ
I was diagnosed Type 1 eleven months ago (age 33) and I too was put on 2 injections a day in the beginning and like you did lots of reading - and talking on this forum - and had to push my DSN to put me on multiple injections back in June. They had also said they didnt want to bombard me with too much in the beginning but when my Hbalc was still 10.1 after 7 months of 2 injections a day and feeling like eating was chore I had to say to them to give me the chance to show I was ready for MDI and carb counting (I was a bit offended to be honest that they thought I wasnt capable of it). When I changed over to MDI I felt the benefits within a week. And I was back to eating pretty much what I wanted (although I have given up the full fat irnbru - not easy for a Scottish bird), when I wanted and keeping my levels pretty stabe. My last Hba1c was 7.1. My hospital only lets you go on the DAPHNE course after you have been diagnosed 1 year but I told them from the outset I wanted to be at least on the waiting list as early as possibly. I got my letter through last week to say I should have a place soon - hooray.

It is early days for and you will have good days and bad days. Try and stay positive and read as much as you can - the good bits and the bad bits. Know that you are not alone - although at times it will feel like that. When I feel like that I jump onto this forum as it has been a great source of advice and support for me. Take care. Melissa
 
You sound a lot like me - I am the type of person where knowledge is power and I like to research things a LOT. you could call me a control freak.... :D

I have been diagnosed nearly a year, and apart from the first few weeks where they tried me on various things - metformin, byetta and victoza as they originally wanted to try treating me as a Type 2....my BG was still potty, well when I could eat because the above made me soooo sick, and by Xmas time last year I was on insulin - straight to MDI.

Because I'd had a few weeks of feeling so rubbish, trying these other treatments (which were NEVER going to work anyway as I am Type 1!) I had done a lot of reading - on this forum and elsewhere online and would have refused twice daily injections - they seem so restrictive. It was never mentioned anyway, I think by then the DSN's knew I was quite clued up with things too!

I did DAFNE very recently, but only because I really pushed for it too & I got a cancellation place which came up quite late notice. If I hadn't been proactive with it I'd still be on a waiting list for up to 18months for DAFNE.....

So yeah basically don't let them fob you off, make it clear what you want - be assertive & proactive, after all it is YOUR health and your body and it's not like you are asking for something out of the ordinary! Aside from a pump, MDI is the best option out there for good BG levels.

Deux's post is also very true though, I can see why some health professionals take the route they do for some patients!
 
Hi this is so like my experience as well!! I was diagnosed in March this year and was put straight onto 2 injections a day, all was going well until August we went on holiday my levels went high which I sort of expected then when we came home they didn't really come down again. I have regular BG reading of 20 at night before bed and get up in the morning with 14 -15 not good. I had my 6 monthly check up with Diabetes Dr on Tuesday this week and he wasn't happy with me!! So plan of action is I have got to up my insulin by 2 units both morning and tea time, and if that isn't enough got to up again by another 2 units if thats not enough we may talk about the carb counting and 4 injections a day. From what I have read on here I think that is the way to go. One thing is puzzling tho I have up'd the insulin but my BG levels are also going up just in last couple of days!!! Strange🙄
 
Hi

I've been in the club for just under 3 months(I'm 35), I think you've been given some great advice, my only advice would be is your know when your ready, when I first joined the forum I had some lovely advice and from their advice i asked about MDI (i went on holiday so wanted to wait til after to change my regime)I've just been put on MDI regime and feel fantastic! I think I was first put on 2 a day injections as I was in DKA and very poorly, but I would just go for it x
 
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