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Were you told how to match insulin to carbs when diagnosed?

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the_anticarb

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Spiders, winter, bills, ignorance, prejudice
This may be a bit more relevant to some of the more established insulin users, I don't know what it's like these days for newbies. I was just thinking about why my control was so poor over the years, and whilst some was undoubtedly my fault a lot was to do with what wasn't explained to me.

When i went on to insulin for the first time (late 90s) I was never told how to match it to carbs. I remember a not very friendly nurse just being a bit like 'here you go take this' and leaving me to get on with it. Now, I did not go straight on to insulin when diagnosed - perhaps that's why? I am a mody so was on metformin for the first 5 years. But after this first, unsuccessful attempt I went back on metformin for a few more years.

When it became clear that wasn't enough, I again went on to insulin - this time basal bolus. Again, no mention of carb counting/matching/balancing. Just told to take 4u of novo rapid with every meal. Of course, some times I hypod but a lot more of the time I just ran high.

As an out of control diabetic, one doctor took me under his wing a few years later and really tried to get me to control my sugars. But AGAIN no mention of carb counting and I did try, but on a fixed bolus dose it was never gonna work so I kept going hypo which was interfering with my life. I was told by the DSN that this was normal and to be expected. DAFNE had just taken off, so I was finally referred to a dafne course and managed to get on one about a year later.

Looking back I'm astounded, and quite angry, that i was never told how to match my insulin to my meals - not even to have a set amount of carbs with each meal, which would make sense in the pre dafne days when they didn't like patients manipulating their own doses. Of course I went up and down like a bucking bronko.

No wonder I 'failed'!!

Did anyone else have this or is it just me?
 
Re: Were you told how to match insulin to carbs when diagnos

anti, I hope you don't mind if I link your post in the T2 section, I have got a question regarding what you have written and want to see if I can get any replies there.
 
Re: Were you told how to match insulin to carbs when diagnos

No problem, not sure if my question is more relevant to t1s or t2s, I guess anyone who's been an insulin user for a while would be able to comment.
 
Re: Were you told how to match insulin to carbs when diagnos

the_anticarb said:
No problem, not sure if my question is more relevant to t1s or t2s, I guess anyone who's been an insulin user for a while would be able to comment.
Click to expand...

Ta, have just posted there. :)
 
Re: Were you told how to match insulin to carbs when diagnos

When I first was diagnosed, I was told to match my carbs to my insulin using 'exchanges' which were 10g or carbohydrates. This was 1994. They gave me a set amount of insulin and basically I ate the same things every day. A few years later, they told me not to bother with all that but didn't really give me much else to go on so I just carried on with the bad control and dull diet of carbs carbs carbs. Everytime I stopped eating all these carbs, I'd go hypo yet always felt overweight and had no control over it.

Then they decided carb counting was back in fashion and I went on a DAFNE course. :roll: I think my knowledge of exchanges helped with my DAFNE as I already had some knowledge of it.

So no, it's not just you... and it is annoying that they just left people with no information at all. I was only 12 when I was diagnosed and didn't understand really what it was all about.
 
Re: Were you told how to match insulin to carbs when diagnos

I've been on insulin for forty years but have never been taught how to carb count. When I was diagnosed, I was given a fixed meal plan (carb wise) and told how much (animal) insulin to take. Had to test urine for sugar and write it all down on a chart (there were no blood meters). The doctors would then make adjustments. I don't think I ever had very good control.

Fast forward to the introduction of analog insulin and it became easier to match insulin to carb consumption, but I was still never really taught how to do it. The only part of it they worked out for me was my correctional dose, so I blundered along taking fixed shots of Humalog at each meal and making correctional doses if BGs didn't end up were they should. I think this probably made my diabetes a bit brittle.

I stopped going to the clinic in 2007 because they didn't seem to understand my brittle diabetes. They still hadn't taught me how to carb count so I had to find out for myself and I have since brought my HbA1Cs down from 9.5 to 7.5. I test at least 10 times a day to achieve this.

So this year I am determined to get on top of this. I've cut my daily carbs from 300 to 150 and I'm logging everything into my phone to help me see cause and effect. And of course, hanging out here is the most useful thing I've done - still learning something new every day :)
 
Re: Were you told how to match insulin to carbs when diagnos

Hi, was dxd at Christmas 2009 at wasn't told about carb-counting. Of course that first week was spent in a haze but I'm quite sure there wasn't any talk of carbs at all :(
First I heard about it was when a friend of the family was put on a pump. Not sure if anyone other than pump-users are taught carb-counting here in Sweden.
 
Re: Were you told how to match insulin to carbs when diagnos

I was 'prescribed' a fixed number of carbs for each meal and told the amount of insulin to take for that amount of carbs. I had been in hospital for 10 days so they were able to work out my ratio from my levels. I was taught how to do minimal adjustments to bolus and basal according to blood glucose/exercise.
I had to be taught to carb count so that I could get that right... it's seems incredible now how much help I did have, especially when I compare it with that given in the UK. The dietitian went through the daily hospital menu writing out/ordering the number of gms for each food. She then talked about meal planning/balancing etc. She was with me for about an hour a day on each weekday I was there. The doctors also discussed it. I have vivid memories of the consultant sitting on the floor in my room drawing pictures of fruit with their carb/gi values.
(and that was just the beginning I later had other sessions on diet as part of a full weeks course)

What they didn't do was encourage me to vary the amount of carbs. I learned that this was possible on an American forum,
They still don't advocate it ...except with a bit of a nod to the fact that I'm doing things OK . Yes some people might be able to do it successfully but most couldn't cope with it. The consultant was horrified when I told him about BDEC, he thought it very dangerous.
Sometimes I meet people from the first course I went on. They are all doing well but none have made the jump to being able to be more flexible in their regimes. One lady in particular I know has an HbA1c in the low 6s but she frets terribly about whether it's 'allowed' to take a little extra insulin to eat a small dessert with Sunday lunch 'en Famille'
But maybe they are right, I am less likely to make errors when I stick to the same amounts I was prescribed, so I tend to do that when at home. On the other hand I wouldn't have the tools to enable me to adjust carbs/insulin when I do daft things like backpacking in the mountains.
 
Re: Were you told how to match insulin to carbs when diagnos

In my day it was carbohydrate exchanges and I was on fixed doses of mixed insulin twice a day, sort of plodded along with this then started to adjust insulin and carbohydrate levels when first going onto basal/bolus.

DAFNE made a lot of sense and went a long way in helping me gain good my current control, anyone not done the course should sign-up as they are sure to learn something from the experience.
 
Re: Were you told how to match insulin to carbs when diagnos

We had exactly the same sort of experience. My daughter was put onto a mixed insulin but I was never told about counting carbohydrates and keeping carb content of meals consistent from day to day. It's no wonder one day she'd be sky high and the next into hypos. The dietician advised that my daughter avoid high sugar foods like sweets etc so when I did read food labels it was the sugar content I was looking out for and avoided high sugar foods, but never did I know that it was the total carbohydrate content that I should have been looking at. My daughter would ask for a bag of crisps and I'd say yes because they were low in sugar, only to wonder why an hour later was her BG high. It was roughly two to three years that this continued for before we were offered a carb counting course and it dawned on me where everything had been going so horribly wrong :(
 
Re: Were you told how to match insulin to carbs when diagnos

I was diagnosed in 1965. Had a set amount of carbs per meal and a set amount of insulin. My diet was always varid even back in those days. Today it would be known as a low GI diet. My Mum worked out though if if X amount of carbs were eaten to a set amount of insulin then it was logical to her that if she did her maths right I could have a little more to eat or less as the case may be.
I've never known anything except carb counting from day one of diagnoses 47 years ago.
 
Re: Were you told how to match insulin to carbs when diagnos

I asked if I could do a course on carb counting and insulin ratios but head DNS looked at my bg diary and said you dont need it !!!!
 
Re: Were you told how to match insulin to carbs when diagnos

Interesting. It seems that Carbsrok's mum knew more than SophiaW's dietician! It seems that carb counting was in vogue a while back (60s/70s/80s?) in the form of 'exchanges' but then fell out of vogue in favour of just watching the sugar. Whilst I can understand this advice for a type 2 on diet alone or medication, who still has some pancreas function, those of us on insulin probably have no (t1) or very little pancreas function and therefore cannot metabolise any carbs on their own. It seems ludicrous to me that such people are not taught to carb count, or some variation of, and in my case and some others, just told to watch sugars! This is ignoring the very basic biological fact that all carbs turn to sugar in the blood!

For those who were 'prescribed' a set amount of carbs to eat at each meal, that seems a little better than not mentioning carbs at all, but as phoenix says this not equip you for any changes in your life/routine. I personally can't imagine anyting worse than having to eat a set amount of food at set times every day as my appetite can be very variable, some times all I want to do is eat and other times I'm not interested. This is perhaps why I have struggled to manage my diabetes even after doing DAFNE, but I was told by one quite enlightened doctor that I either have a routine in my diet and more predictable blood sugars or if I want to vary my diet a lot the price I pay will be hypos/highs if I get the dosing wrong.

I'm so glad that today DAFNE/carb counting courses are offered to most (in UK), just wish they had thought of this years ago, and not told me just to watch the sugars - I think the health service at large has a big problem admitting that so called healthy foods like wholemeal bread and porridge are a problem for a lot of diabetics - not that we can't eat them of course, but we need to match our insulin so precisely.
 
Re: Were you told how to match insulin to carbs when diagnos

Carb counting or awarness was in way before the 1960's :) I was also taught from day one more exercise meant more carbs to counteract a hypo. I was also very aware of reducing insulin when very active.
Not 100% sure on this but think the eat what you like and when you like came in in the early 1980's, which is when home blood testing and synthetic insulin's first came into use. Which imho was the biggest diservice ever done for people with type 1 diabetes.
 
Re: Were you told how to match insulin to carbs when diagnos

I remember when I was diagnosed back in 1981, I was given a set amount of insulin to take and a set amount of carbs, I was just 10 at the time, but they did not take into account what I ate and how often I ate and my mother was taught to count the carbs not me, so going back to school was fun at lunchtimes. I also remember when u100 came in and then the pen, my parents had to pay for my first pen by Novo £20, and that came in as being the best thing you could have, want to go out for a meal then up your dose, don't feel like eating a lot then cut your dose, but the hospital I was at never gave any exact numbers to work with, so you couldn't do it to well and this in turn left it to the consultant. I have only recently been offered a Dahne course and I've been diabetic for over 30years and I would have difficulty in attending one due to hubbies work. So I have just completed the BDEC one online, which made some sense.
 
Re: Were you told how to match insulin to carbs when diagnos

Hello. I am replying on behalf of my husband who was diagnosed with type 1 diabetes at the age of 26 and that was 41 years ago. He always has been and still is, very well and we have had 41 years of successful management.
Things these days are greatly changed from when he was diagnosed and I have often come across people who don't seem to know much about the control of carbohydrates in relation to insulin doses, but this is how we were treated in the beginning.
When he was diagnosed he was taken into hospital - the norm then but not today! - and that is where they worked out the diet and the dosage.
This was done by using, amongst other factors, the age and the occupation of the patient - whether a sedentary job or a manual job. Obviously one doing manual labour uses up more energy than someone doing a desk job. A diet was then worked out for him to correspond with the other factors considered. This was done on what was called a 'lines' system - basically 10 grams of carb to a 'line'.
This was spread out over a day (16 lines for the day) viz; breakfast 3 lines, mid morning 1 line, lunch 4 lines, mid afternoon 2 lines tea 4 lines and supper 2 lines. To coincide with this it was in one's best interest to learn the carbohydrate value in foods. For eg- 1 slice of bread, 1 potato (egg size), an apple - 1 line. These days it's much easier because most foods show the values on the packets. This is not as harsh as it seems because there was no need to take account of any other ingredients such as proteins and fats so basically foods containing only these things were free.
We have basically stuck to this all our lives and find it hard to see how more recently diagnosed diabetics do manage.
Unfortunately, because of the large range of insulin there are on the market now and the difference in ideas, I can't really give any advice and after having discussed this with our diabetic nurse neither can she because unfortunately this system is now defunct and younger staff cannot advise.
Perhaps some sort of eating routine is what is needed. From experience I also know that you must be honest with your self! I know that when my husband was younger he was often hungry and sneaked sweeties on the side.
Having said all that, the old method has worked well for us but it does take some self control!
Sorry I can't help further!
 
Re: Were you told how to match insulin to carbs when diagnos

Hiya,

I was diagnosed T1 6 yrs ago and was told how much to inject and what to eat and what not to eat. As the years went by I had been increasing my carb intake in response to hosp telling me to increase insulin. Really overdoing it so as not to have a hypo. I even stopped testing as felt so demoralised and would just inject same amount 4 times a day regardless of what I had eaten or drank. Even eating things I shouldnt!! Then pretending everything OK!!! HBA1C was slowly coming down but not as a result of me taking control just because of the amount of insulin I was on. My friend ( an ex collegues dsaughter ) told me about DAFNE about 2 yrs ago. However when I looked on the internet and asked at the hosp I was told it wasn't available in our area. I have lost 1 1/2 stn since the summer by cutting down portion sizes, most recxently started having alot of hypos. I now realise as a result of loosing weiht but not adjustin insulin accordingly. Found BDEC on line, registered and have started to carb count and have reduced basal and NO HYPOS!! :D I may have gone too far as sugars have been high the last few days. I may have to increase slightly. I know that there will be ups and downs but I sooooo agree that we need to be educated and able to make informed decisions to contol it ourselves. Sounds like I am certainly not the only one!!!
 
Re: Were you told how to match insulin to carbs when diagnos

looked on the internet and asked at the hosp I was told it wasn't available in our area.
Click to expand...

Hi Shop,
DAFNE may not be available but PCT's have their own courses with different names :)
Please do go back to your DSN and ask what is available. At the very least you are entitled to 1-1 help from a dietician with carb counting skills.
Do also take into account that very few people also have the same carb ratio over a 24 hour period. :)
 
Re: Were you told how to match insulin to carbs when diagnos

CarbsRok said:
looked on the internet and asked at the hosp I was told it wasn't available in our area.
Click to expand...

Hi Shop,
DAFNE may not be available but PCT's have their own courses with different names :)
Please do go back to your DSN and ask what is available. At the very least you are entitled to 1-1 help from a dietician with carb counting skills.
Do also take into account that very few people also have the same carb ratio over a 24 hour period. :)
Click to expand...

I don't know if this spread sheet is up to date but it gives info on T1 courses both DAFNE and others with an agreed core content are available in the UK
http://www.diabetes-education.net/index ... ge=centres
 
Re: Were you told how to match insulin to carbs when diagnos

Thanks Pheonix. I have had a look and there looks like there is one not far from me! I will look into this furthur. The dietician never mentioned carb counting only gave me an example of how much carbs/protien and salad/ veg should be on a plate. Obviously not taking into account weight, type of carb and what dose of insulin I was on. I remember that the size of protein should be no bigger than the palm of my hand. It is also very hard to remember everything in detail. What I love about the BDEC course is that I was able to download the info and if neccessary print it of and therefore always have something to refer to. My Hospital Drs were aware that I was interested in DAFNE/Carb counting ( although at that stage I was unaware of other courses existance ) and had even made a note of it in my notes and refered back to it yet it was never discussed that there may be other courses around and about!!! I was very much left for me to discover it for myself. Which I have done with BDEC. Thank you for taking the time to tell me this and I will be getting in contact with the course manager. I have a Hosp appt in about 3 weeks/ Getting bloods done this week.............Will ask again and see what response I get!! :)
 
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