Is MDI the right way to treat newly diagnosed T1 diabetes given the current educational model?

[tim2000s]

Thought I'd throw this question out there to both the newly diagnosed and those who have had T1D a lot longer as it's a question that I've been pondering over a long period seeing the experiences of newly diagnosed come through the forum doors.

Just to be clear here, T1D means every form of T1, from childhood onset through LADA.

So here's my thinking and feel free to give it a good kicking if you want, because it's a little controversial.

The NICE guidelines state that MDI is the preferred method for treating T1D, and we know that T1D has many forms and typically encompasses a honeymoon period. We also know that MDI is best done alongside carb counting and structured education to understand how you interact with the insulin you've been given.

The typical implementation of MDI as a newly diagnosed T1 in the UK is: "Take x units of long acting insulin once a day and x units with each meal, and eat carbs".

The result of such an approach is difficulty in managing glucose levels due to the pancreas firing out Insulin in fits and starts and this timing not being easy to handle alongside the necessary insulin injections that someone has to take.

In my mind, this approach is little different to the old approach to a new diagnosis where you were put on twice daily injections and told when to roughly eat. Yes you are feeding the insulin in this model, but so are you in MDI without education. The only major difference is the timing of meals is not structured based on when the two shots were taken.

Structured education is typically not offered until six to twelve months after diagnosis due to the pancreas' insulin release - whilst enough insulin is still produced, working out I:C ratios and Insulin Sensitivity Factors is nigh on impossible. Without these, managing carb counting for rapid acting insulin is extremely difficult, and we know that during the honeymoon period, these can change constantly.

Now at diagnosis, there is a huge amount going through your head. Many people don't necessarily want to know about carb counting, ISF, I:C ratio, etc, so the idea of providing set doses makes sense. It's in the period after this that the difficulties come in as many people don't understand why they are hypoing and what they can do about it, then end up here.

Given this set of statements, if we want fast turnaround on new diagnoses, should a psychological assessment be undertaken at diagnosis as to what a new patient can cope with, and treatment managed according to that, rather than brought in for a day, given two types of insulin, and sent on their merry way?

Personally, I think the best approach is still to make a new diagnosis an in-patient for a few days to give them and their family a chance to come to terms with it in a more supportive environment and to allow a better assessment of what would be the best regime for the patient during that period. Part of that determination should be a discussion with the patient of the options available and what the implications of it are. If it does turn out to be MDI, then help by providing a decent level of education as to how to use it, but if a fixed dose regime is elected, this shouldn't be an issue either.

So no, I don't think that MDI should always be the option at diagnosis. I think there are many that would opt for something simpler and more regimented. I expect that many disagree, but I'd love to know your thoughts!

 

[jackois]

As ever. there isn't a 'one size fits all' with type 1. If you take all of the factors involved with the patient, age, intelligence attitude and so on & all of the factors involved with the care team, from GP through to hospital & all the healthcare professionals involved it's no surprise people end up with differing regimes of treatment.

My experience was diagnosis from my GP who booked me straight down to the hospital to an acute care unit. They confirmed his diagnosis and gave me an initial dose of insulin which brought me back from the fuzzy world I'd been inhabiting. The diabetes team then set about giving me a crash course in diabetes education & were adamant that I wouldn't be leaving the hospital unless I could convince them I could cope. That included basic carb counting and adjusting dosages, how, when & why to test, Hypo symptoms and how to treat.

Once happy that I'd still be alive the next day, I was sent home with carrier bags of stuff and a promise that they would ring first thing the next morning, which they did and literally asked me all of the same questions I'd answered the day before. The following week, I had a visit to the local diabetic clinic for further confirmation that I knew what I was doing. A month later and a visit to a nutritionist and a follow up at the clinic.

2 years on and the clinic has agreed that neither of us get any value from me attending every few months & I have a GP review with the nurse & doctor once a year.

My HB1AC is 53 and I rarely have a BG reading above 8mmol. I still visit this site most days and keep my knowledge up to date, believing that it's my illness to deal with. Was I lucky with the team at Southampton NHS? Reading other's story make me think that I was very lucky, but I think that they tailor your treatment to yourself rather than treating all the same.

Hope this is what you meant with your original post.

 

[tim2000s]

Wow @jackois, that's how it should be. I fear in many cases, that's not how it is!

 

[noblehead]

Personally, I think the best approach is still to make a new diagnosis an in-patient for a few days to give them and their family a chance to come to terms with it in a more supportive environment and to allow a better assessment of what would be the best regime for the patient during that period. Part of that determination should be a discussion with the patient of the options available and what the implications of it are. If it does turn out to be MDI, then help by providing a decent level of education as to how to use it, but if a fixed dose regime is elected, this shouldn't be an issue either.

I quite agree, a choice should still be given to which insulin regime would best suit the patient when newly diagnosed.

In the early days of MDI twice daily injections were still the preferred option as it was seen to give the patient time to adapt to taking injections, even some years later there are people who still prefer twice daily injections over MDI, both have their merits.

 

[PaulinaB]

I think it may be tricky to give people a choice when they're newly diagnosed - how are the supposed to know what those things even mean?

I can only say from my experience. When I was diagnosed I was given Novomix and told to inject X units, record everything, etc. But I was also given a phone number and told to call in 3 days - it was a phone line to diabetic nurses in my hospital clinic. For the next couple of weeks I called my nurse every 2-3 days, told her what my numbers were and adjusted my doses as per what see said. After a while (and I mean a while, 2 months probably), I saw my nurse again and she decided mixed insulting wasn't working and I should use MDI. Best decision ever.

What were my takings?
1. It was ok that she put me on mixed insulin at first - I could get my BG down to any sort of human levels (was 50mmol/l on diagnosis) and didn't freak me out completely - I could handle injecting X units 2 times a day.
I had a chance to get to grips with the diagnosis and do my research before I was overwhelmed with practicalities.
2. I think it took way too long to put me on MDI. After first 2 weeks it was quite obvious (now that I think back) that it was not working for me and I was already aware enough of my reactions that talking about MDI at this point would not send me screaming.
3. I'm very happy on MDI, my control is great and I wouldn't change it. But am I aware that there are people for whom this is just too complicated and for whom mixed insulin may work better.

Do I think people should be put on MDI straight from diagnosis? Probably not... I'd give them mixed insulin and immediately send them to a carb counting course. Then, if there's a chance MDI may work better for them and they're up for it - go ahead.

 

[1abRat]

I remember when I was first diagnosed I was in the hospital for three weeks whilst they taught me and my parents how to cope, establish a routine and check that I could recognise and respond to hypos. I didn't even have DKA when admitted and felt physically fine once the unquenchable thirst had gone!

I recall that week 3 particularly was very dull and probably I only needed two weeks but I do think that this was invaluable and has always meant that I manage my diabetes confidently. I wasn't worried about going on overnight trips at school when on Ye Olde 70/30 or when I went to Africa for three months on my own at 18 and still on Insulatard/Actrapid and I have always corrected my sugars and adjusted my doses.

I think if I'd been left to my own devices as quickly as newly diagnosed T1's are these days I'd have been traumatised, probably terrified of hypos and totally overwhelmed. In many ways I think going back some way towards how I was treated in 1994 would be much better and of course taking into account people's levels of confidence and how well they are responding to education is paramount. I'm sure that as a naturally curious, stubborn scientific kind of a person I'd have been OK in the end but thankfully I had so much support in the early days. Incidentally, I also think that as my HbA1c has always been in the "good" range, I'm complication free after 24 years (touch wood) that short-term investment in me may have saved more money for the NHS in the long-run.

Sorry for rambling!

 

[TorqPenderloin]

Are we discussing the situation as if there were unlimited resources, or from a standpoint based on what is reality? Those are two completely different discussions.

Sure, it would be great for someone newly diagnosed to receive in-patient care, receive psychological evaluations, and education around what management approaches are available, but where does that money come from? You're talking about adding significant expenses to effectively do that....expenses that most countries' healthcare systems can't afford.

At diagnosis, an emergency room doctor's job is to make sure you don't die, get your condition stable, release you, and help the next person in need. That's true in every single country I'm aware of.

After that, you see a GP and/or a diabetes professional and the next step is to make sure you don't end up in the ER a second time.

So is MDI the "Best" and initial approach? Considering financial resources (or lack thereof), initially yes. It's cheaper, easy to prescribe, easy to comprehend as a patient, and I'd argue that human error is minimized (you set the dose, stick the pen in, and push the button) compared to the complexities of operating a pump or immediately putting a patient on a carb counting regimen.

Now, if we are talking about an abundance of resources, then sure, it would be great to put every new patient on a CGM, provide in-patient care, psychological/emotional resources, insulin management education, and access to group therapy. However, those things cost money....money most don't have.

 

[dancer]

Thinking back to my diagnosis at 24, I was stabilised in hospital and was given a quick lesson from a dietician on how to count exchanges (1 exchange = 10g carbohydrate). I was told how many exchanges to have for each meal and morning, afternoon and bedtime snacks. After a week I was sent home with my glass syringe and Monotard insulin and told to inject at the same time every morning.

The more I read about diabetes, the less I could understand how one injection could possibly give me good control. Even though I knew that many diabetics were injecting more than once per day, and I had some concerns about my own control (even though all home urine tests and hospital blood tests were fine), I didn't ask for my insulin regime to be changed.

It took me a couple of years to accept my diagnosis, so I suppose I would have had a hard time with 2 or more injections per day, after being stabilised.

I do believe that MDI gives much more freedom but it does require a certain amount of training (and maybe a calculator, for those, like me, who can never find the calculator on their phone.) It doesn't have to be a full DAFNE course - mine lasted 2 days, and most of the first day I'd already learned 30 years before in the short meeting with the dietician after diagnosis.

 

[tim2000s]

So is MDI the "Best" and initial approach? Considering financial resources (or lack thereof), initially yes. It's cheaper, easy to prescribe, easy to comprehend as a patient, and I'd argue that human error is minimized (you set the dose, stick the pen in, and push the button) compared to the complexities of operating a pump or immediately putting a patient on a carb counting regimen.

The alternative, which was commonly used, was to put new patients on twice daily insulin, rather than MDI. I've a suspicion that, if you aren't introducing carb counting/education appropriately to newly diagnosed, then this is easier to live with.

 

[azure]

I don't remember all the details, but I was put on twice daily insulin after diagnosis. It started off as a mixed insulin while I was in hospital, but my BS was hard to control and my insulin needs didn't fit the percentages of the mixed insulin. So I was then put on Actrapid and Monotard and drew them up myself by syring twice a day, a particular number of units of each.

I had to eat 50g carbs for each meal, so I don't agree that not being taught carb counting would work better with two injections. I found I had to count carefully and I always made sure to get my carbs right. My control was good.

The only bad thing about the two injections was the lack of flexibility in meal times. I remember that my morning slow-acting Monotard would kick in just before noon and I'd have to eat lunch then. But in another way, it was convenient to know the injection was already done.

I changed to MDI after maybe a year, and I found the number of injections frustrating at first.

I don't think psychological evaluations are necessary but I do think a hospital stay where you can get education is very beneficial. I was in hospital a few days and saw the consultant every day, a dietician, DSNs - it was a great education. I was taught carb counting and given a book of common foods and their carbs. Apart from the huge shock of diagnosis, I felt perfectly able to cope when I came home.

So I think mixed insulin would be fine to start with, and that the crucial thing is to be taught to carb count from diagnosis. It's shocking to me to read about Type 1s here who've had diabetes for years and still haven't been shown how to count carbs. To me, that's negligent. It doesn't need DAFNE, just a brief session with a dietician.

 

[Jaylee]

Personally, I think the best approach is still to make a new diagnosis an in-patient for a few days to give them and their family a chance to come to terms with it in a more supportive environment and to allow a better assessment of what would be the best regime for the patient during that period. Part of that determination should be a discussion with the patient of the options available and what the implications of it are. If it does turn out to be MDI, then help by providing a decent level of education as to how to use it, but if a fixed dose regime is elected, this shouldn't be an issue either.

I feel on the above point. Get the patient back into their normal life & monitor it from there.. As opposed to the ridged sterile "control" environment of a hospital ward..?
If that means a "home visit" & consultation at the end of the day (or at work or school.) then so be it.. The patient should be monitoring BS, carb counting & logging it all anyway..!

Great thread though..!

 

[Daibell]

I come from the perspective of a misdiagnosed T2 (actually a LADA which came on slowly). Having a good few years of experience with tablets and a meter and lucky to have a superb DN who had worked in the clinic but now in my surgery. She put me on just Basal to start with but after looking at my recorded numbers added Bolus and immediately started me carb-counting. I've never looked back. My nurse judged me as a bit of a nerd who could cope with the technicalities and routine. I believe that for many the NHS makes too much of a deal with regard to education and carb-counting at a cost to the NHS. I suspect it also makes it sound more complex than the way my DN handled it i.e. she made it sound easy and routine and nothing to worry about. I don't see the honeymoon period as an issue as we just need to be told that over time our Bolus (and Basal) needs may increase - no big deal really. So, I go for starting straight away with MDI unless the patient presents as worried and nervous. The DN can give a simple explanation of carb-counting etc and appropriate leaflets (not the diet ones!). As long as he/she leaves contact details and keeps in contact for the first few weeks I wonder why any education courses are needed except for the worried few?

 

[C-Mack]

Excellent post and great discussion. I live in Canada and was diagnosed as Type 1 early last year. My family doctor sent me to the Emergency Room believing me to be Type 1, there I had a great endo who would have admitted me in a heartbeat had I even issued one word of "not feeling well". I sat there while they poked and prodded me saying I felt "fine" which was completely untrue but I am excellent at denying things in the hopes that it will just go away. In the end, he decided on releasing me with Metforim and an urgent referral to the internal medicine clinic.... who sent me back to the ER after seeing me 5 days later... but that's another story.

That being said, I was on MDI within 2.5 weeks from that original hospital visit and full carb counting within a month of that. A hospital stay may have helped but at the same time I had a diabetic educator I could email and call and was in to see her every week for the first month and then monthly until 3 months and now I see here only when I need to.

I'll add I was 38 at the time... now had one of my kids been diagnosed instead I would have pushed and been way more comfortable with a hospital stay and training/etc.

 

[fairylights]

I was diagnosed four years ago. Went to my GP one day was seeing a DSN in the hospital the next day. She put me on mixed insulin to start, I didn't have any time off work but she phoned me every day and I saw her every few days for the first few weeks. This worked fine for the first months (honeymoon?) then stopped working so well so, after about 9 months the consultant put me on MDI when I suggested it. I just had a session with a dietician / the DSN to carb count at first. Went on DAFNE around 2 years after diagnosis and went onto a pump a year after this. I can phone and or email my DSN at any time to ask for advice or go in and see her whenever I need to, I have been very happy with my treatment so far.

I have a friend from my teenage years who has a brother and sister who have both had T1D since they were children, both of them are on twice daily injections now 40 odd years after diagnosis. Last time I saw my friend she was fascinated by my pump and wondered if her siblings would benefit, But they both only do do BGL tests once a day at most. Perhaps twice daily is better for them.

 

[himtoo]

When I attend Diabetes clinic at hospital every 6 months there are usually between 4-6 people (not always the same people) that are in for appointments on the same day in the same time window.

using this logic that in a hospital catchment area there are most likely between 4-6 people being diagnosed in an average week with type 1 diabetes. it would seem to make sense to run an education class for a week for the newly diagnosed to cover all the basics of self management.
( ok somebody diagnosed on a wednesday would have to wait until the following monday to start but that is no worse than some of the stories some have told on the forum at initial diagnosis and how they were treated. )

the cost could be high because it would be taking the various disciplines within the hospital depts ( consultant , DSN , Dietician , psychologist, podiatry ) off their normal front line duties of seeing their regular patients
the benefit would be potentially down the road when better education lowered costs of dealing with complications and less than good control.

As to the actual topic -- keeping things as simple as possible at first seems the best to me( 2 shots a day and fixed meals) -- one's whole world is turned upside down at diagnosis so a simple mostly regimented routine approach would seem to assist in providing a firm footing for the first few months until things have settled.
this is based on no education structure currently in place.

 

[Diakat]

I was on MDI within a week of diagnosis, had a quick carb counting session with dietician and that was it. Been told I "don't need DAFNE". I'd probably have kicked up a huge fuss if told I had to be an in patient to start my treatment, I was functioning, have a full on job and family, no way I'd go into hospital if I could avoid it. However, it is clear from discussions on this site that some people do not get enough support.

 

[fairylights]

My hospital clinic is starting a special type 1 day one day a week where they will only see patients with T1D - the Dr told me they are hoping to have some drop in education sessions during this clinic. I will see what its like when I go next month.

 

[RuthW]

Thought I'd throw this question out there to both the newly diagnosed and those who have had T1D a lot longer as it's a question that I've been pondering over a long period seeing the experiences of newly diagnosed come through the forum doors.

Just to be clear here, T1D means every form of T1, from childhood onset through LADA.

So here's my thinking and feel free to give it a good kicking if you want, because it's a little controversial.

The NICE guidelines state that MDI is the preferred method for treating T1D, and we know that T1D has many forms and typically encompasses a honeymoon period. We also know that MDI is best done alongside carb counting and structured education to understand how you interact with the insulin you've been given.

The typical implementation of MDI as a newly diagnosed T1 in the UK is: "Take x units of long acting insulin once a day and x units with each meal, and eat carbs".

The result of such an approach is difficulty in managing glucose levels due to the pancreas firing out Insulin in fits and starts and this timing not being easy to handle alongside the necessary insulin injections that someone has to take.

In my mind, this approach is little different to the old approach to a new diagnosis where you were put on twice daily injections and told when to roughly eat. Yes you are feeding the insulin in this model, but so are you in MDI without education. The only major difference is the timing of meals is not structured based on when the two shots were taken.

Structured education is typically not offered until six to twelve months after diagnosis due to the pancreas' insulin release - whilst enough insulin is still produced, working out I:C ratios and Insulin Sensitivity Factors is nigh on impossible. Without these, managing carb counting for rapid acting insulin is extremely difficult, and we know that during the honeymoon period, these can change constantly.

Now at diagnosis, there is a huge amount going through your head. Many people don't necessarily want to know about carb counting, ISF, I:C ratio, etc, so the idea of providing set doses makes sense. It's in the period after this that the difficulties come in as many people don't understand why they are hypoing and what they can do about it, then end up here.

Given this set of statements, if we want fast turnaround on new diagnoses, should a psychological assessment be undertaken at diagnosis as to what a new patient can cope with, and treatment managed according to that, rather than brought in for a day, given two types of insulin, and sent on their merry way?

Personally, I think the best approach is still to make a new diagnosis an in-patient for a few days to give them and their family a chance to come to terms with it in a more supportive environment and to allow a better assessment of what would be the best regime for the patient during that period. Part of that determination should be a discussion with the patient of the options available and what the implications of it are. If it does turn out to be MDI, then help by providing a decent level of education as to how to use it, but if a fixed dose regime is elected, this shouldn't be an issue either.

So no, I don't think that MDI should always be the option at diagnosis. I think there are many that would opt for something simpler and more regimented. I expect that many disagree, but I'd love to know your thoughts!

You still need to carb count on two injections a day so that the carb content of your meals is always the same.

The point of MDI was supposed to be to allow more flexibility of both timing and carb content of meals. But, when it was first instigated none of us were trained in insulin:carb ratios so it has not been an unqualified success. This has finally been acknowledged, hence the rush to DAFNE courses and their like (a very good development).

After 49 years of Type 1, I can say that carb counting was probably given much greater importance when I was diagnosed. I was reading charts of foods and their carbs per ounce by the time I was 5 years old. I was on one injection of mixed insulin per day.

Mixed insulin regimes are much more rigid, but, yes, at least in the short term, they are easier to manage. Once the pwd stops 'obeying' the rigid regime, they become much harder.

 

[RuthW]

Are we discussing the situation as if there were unlimited resources, or from a standpoint based on what is reality? Those are two completely different discussions.

Sure, it would be great for someone newly diagnosed to receive in-patient care, receive psychological evaluations, and education around what management approaches are available, but where does that money come from? You're talking about adding significant expenses to effectively do that....expenses that most countries' healthcare systems can't afford.

At diagnosis, an emergency room doctor's job is to make sure you don't die, get your condition stable, release you, and help the next person in need. That's true in every single country I'm aware of.

After that, you see a GP and/or a diabetes professional and the next step is to make sure you don't end up in the ER a second time.

So is MDI the "Best" and initial approach? Considering financial resources (or lack thereof), initially yes. It's cheaper, easy to prescribe, easy to comprehend as a patient, and I'd argue that human error is minimized (you set the dose, stick the pen in, and push the button) compared to the complexities of operating a pump or immediately putting a patient on a carb counting regimen.

Now, if we are talking about an abundance of resources, then sure, it would be great to put every new patient on a CGM, provide in-patient care, psychological/emotional resources, insulin management education, and access to group therapy. However, those things cost money....money most don't have.

They become the cheaper option very quickly. The reason the NHS has instigated this kind of education in the last few years is not because it's flush with cash but because they found almost 80% of Type 1s had 'poor control'. That means complications and the long term and a lot of A&E in the short term. Beyond the actual health service, there are effects on the economy when people are rendered unfit for work.

 

[noblehead]

After 49 years of Type 1, I can say that carb counting was probably given much greater importance when I was diagnosed. I was reading charts of foods and their carbs per ounce by the time I was 5 years old. I was on one injection of mixed insulin per day.

That's interesting @RuthW

I remember being taught in carbohydrate exchanges on diagnosis but would have to say things are much better now with the education courses on offer,also I think now Consultants/DSN's & Dietitians are beginning to realise that its not just carbs that impact on bg levels in type 1's.