If not carb counting... then what?

[rossoneri]

I think I have always essentially counted carbohydrates but over the years it has gone under different names, been done to varying degrees of accuracy and the approach to using the counted value has altered significantly.

When I was diagnosed in the mid-1980s I was initially placed on two insulin injections a day, both fixed doses and a carbohydrate allowance for each meal and snack that was also essentially fixed using the 10g carb exchange rule and the Countdown exchange book with foods split into good, acceptable and bad diabetic foods.
Over the years my approach has evolved and I started varying my doses based roughly on what I was eating, then having four/five injections a day, learning how to calculate my carb to insulin ratio, how and why this ratio varies throughout the day and from day to day, how factors such as the food was cooked, its fat content, its glycemic index, my general health, my stress levels et cetera may also influence the insulin dose I require for any particular meal.

So here I am now believing my carb counting is done from a very informed standpoint and I trust myself to have a reasonable stab at getting the insulin dose on my pump correct whenever I eat. And yet there are still occasions when my post meal BGs drop to below 4.0mmol/l or spike into double figures, perhaps with a frequency comparable to when I first started having insulin injections. I can therefore sympathise with any diabetic who questions the need to go to the trouble of all but the very basic carb counting. From my perspective however, I am happy to attempt to get the calculation correct because I enjoy the challenge and like to believe that if I do get it wrong I can review what I should do next time to improve my calculations the next time. 😉

But how can a DSN or clinic advise an insulin user on dose if they have no idea what's being eaten?!?

Yes Mr X, you should take 6 units for breakfast.

Righty-ho thinks the patient and eats bacon and eggs on Monday, then fancies 4 rounds of toast on Tuesday, then grabs an all day breakfast bap on Wednesday. (so almost no carbs, 60g and 40g)

How can this be seen to be appropriate approach to diabetes care? Or am I massively off target? Does this approach actually work for some?

Well consider this, Mr. X has a breakfast of a bowl of cereal, two toasted slices and a white coffee. On a morning dose of 6u of insulin his BG regularly climbs from around 6.5 before breakfast to 9.5 two hours afterwards. So the DSN advises him, or he decides for himself, to raise his morning dose to 7u. The next day he has the same breakfast and his BG remains more level. He has the same breakfast for the next four days with similar level BG results. On the fifth day he discovers he has run out of cereal so instead he has two extra slices of toast. He finds that on this day his BG drops from 7.0 to 4.5. He therefore resolves that the next time he is cereal-less he will have either five slices of toast with 7u of insulin or four slices with just 6u of insulin. In the meantime he restocks his cereal supplies ready for tomorrow's breakfast.

Is Mr. X carb counting? He does not need to know that each slice of toast is 15g of carbs and his cereal and milk 50g, just that three slices of toast is a closer equivalent to his normal cereal than two slices.

Yes Mr. X has very restricted options for breakfast but then many people do and are quite content with that approach. I know that I did this for a number of years without too much difficulty. I also know that personally there is no way I would want to return to that approach. But I am also not confident that I would necessarily have better diabetic control than Mr X or a better quality of life, just that I would have a wider choice at breakfast time than him! 😎

 

[everydayupsanddowns]

Rossoneri

In your example, I'd say Mr X was working an Exchanges (or 'Lines' it seems) system. He knows that he needs to eat so many slices of bread (or equivalent in other carbs) for his breakfast. If it's cereal he'll need to work out how much he needs. And he'll need to know what size of a bowlful he'll need (otherwise if he swaps muesli for rice crispies he'll be in trouble). To be honest he'll probably need to get the scales out to be sure. He'll need to know that eating a fry-up isn't enough that he'll need some toast too on those mornings.

So that is carb counting isn't it?

So maybe it's just a naming issue. Is it just that people think they aren't carb counting when they are?

I do hope so.
M

 

[PattiEvans]

PMFJI but I couldn't resist this thread. Back in 2003 when I was diagnosed I was told I was T2. This was based on nothing more than the GPs nurse's guess because I was 57 at the time, despite having lost weight hand over fist, having a BG off the scale of a meter and showing ketones - OK not huge amounts of them but all the same. I was put on mixed insulin because after 3 weeks tablets were making no difference whatsoever and I was fed up of feeling very very ill.

I was told what dose to take and sent on my way, I had to report what my pre-lunch figures were on the phone to the nurse every day for 10 days and she kept on telling me to increase the morning dose by 2u. What I didn't realise, was that I was all unwittingly reporting the pre-lunch figures which were high as a result of over-treating the regular 11.30 am hypo. After some months I was fed up with the swinging BGs, regular hypos etc and weight gain that came from heeding the dietitian's advice to eat starchy carbs with every meal. So I got online and met a group of people who helped me. I fought tooth and nail to get onto MDI which I did. I asked the DSN (yes, I've seen a real one twice) about Carb counting and she said "We don't offer that service". So I proceeded as per Mr X above for quite some while with very reasonable success.

Cornwall offered one DAFNE course, and my GPs nurse put me forward for it but it was refused because "You are T2" - that diagnosis has since been revised but not officially and anyway T1.5s aren't eligible either.

Eventually I did the BDEC online course and now do carb count plus I factor in all the nuances such as "will I walk to work or take the car" etc. However, I shudder to think what would have happened had I not become motivated to teach myself.

 

[everydayupsanddowns]

I was told what dose to take and sent on my way, I had to report what my pre-lunch figures were on the phone to the nurse every day for 10 days...

Thanks Patti. Thank goodness you went off to find some information that helped you.

I've only seen a dietician once or twice since DX. Their advice has always been more to do with the types of foods eaten (low gi/low fat/low sugar/blah blah) rather than the quantity required to match insulin doses.

Can you remember if the nurse you were speaking to was asking you about what you'd had for breakfast at the time? Or if she was mentioning anything about the amount of carbs you were eating for the sorts of breakfasts you were eating? Any sorts of clues you were able to pick up to give you some understanding of the carbs:insulin relationship?

 

[rossoneri]

Yes I definitiely agree that my Mr X is carb counting to a certain extent. The Exchange mechanism is carb counting but just done in a slightly different way.

What I don't think Mr X necessarily needs to know is how many carbs are in the bowl of cereal and toast that he eats. He may have roughly the same amount of the same cereal and milk each day and have the same sliced bread toasted each morning. If his cereal does change he may decide for himself that an adjustment is required or he may discover from his BG readings that a bowl of rice crispies raises his blood sugars more than a bowl of bran flakes. Trial and error is one approach towards learning this rather than knowing his bowl size and/or getting the kitchen scales out, reading the carbs per 100g on the cereal packaging, calculating the total carbs and then dividing it by his morning carb to insulin ratio etc.

With our carb counting approach we might be more likely to get the rate correct but considering how many variables are at play with managing diabetes I certainly cannot guarantee that I will get it spot on first and every time, I can just make my estimate as informed as possible.

I am assuming a few things, such as Mr X does know that the insulin processes carbs; that cereal, bread and milk contain carbs; black unsweetened coffee does not etc. and also that Mr X does test his BG regularly. This last point is of course also key towards maintaining good control.

 

[everydayupsanddowns]

With our carb counting approach we might be more likely to get the rate correct but considering how many variables are at play with managing diabetes I certainly cannot guarantee that I will get it spot on first and every time, I can just make my estimate as informed as possible...

I'd absolutely agree with that. But I wonder if that's my point.

I have weighed my cereal on the scales since DX and it still doesn't always work out (for any of the 100 diabetes reasons that drive us all crazy). If I hadn't been advised to have at least 'knowing the weight of cereal/grams of carbs' as a fixed point I don't know how I'd have had a hope of spotting any kind of patterns.

 

[FM001]

Well I was diagnosed in the early eighties too and the 10g carb exchange was the standard advice given out. The diabetes nurse worked out my insulin doses and carb intake, which I stuck to religiously until I seen the error of my ways and decided to adjust my own insulin to the carbs I ate. Taking the fixed doses meant that there was times where I was stuffing my face with food I didn't wish to eat, or looking for high carb items that suited my insulin dose, often using sweet high glycemic foods which would raise my blood glucose fast and then bring it crashing down 2-3 hours later. I can't recall correction doses being mentioned back then, but I didn't know what my levels were before eating as the testing of urine to determine sugar levels was totally inadequate. The animal and human insulins back then when I was first diagnosed were slow and unpredictable and could never produce the good hba1c levels we see today, as where the new analogue insulins are much faster acting and much more suitable for the purpose of modern day carb counting methods.

The science behind carb counting has much improved over the years thanks to courses such as DAFNE, and as previous posters have pointed out it is not all about the quantity of carbs consumed, more important is knowing how fast certain foods will be digested in the body and raise blood glucose, this is where the glycemic index/load is useful knowledge. Toby.

 

[marke]

I'm with you there Mike.


The PCT's pay the Hospitals Trusts to provide a diabetes service via a contract. The PCT can remove that contract when it wants to and ask a neighbouring hospital or whatever to provide a contract instead.

The PCT expect the hospitals trust to employ and train people who are expert in diabetes to run the diabetic teams and clinics. If they don't give them up to date training then they are totally failing in their duty to care for their patients. This includes providing specialist diabetic dietetic care from people who can teach carb counting, it does not have to be via a Dafne course, it is easy to start someone after a half hour appointment and then have a phone number or email address. I do this a lot and have helped start many many people.

So you can totally blame your team for rubbish care and failing you and your health and if you think your team falls into that bracket, you are perfectly within your rights to move hospital to wherever you like in the whole country !

😛

Sorry I just don't agree with this. Most T2's and ever more T1's are now being treated by 'primary care' i.e GP's. The GP's mostly have DSN's and these are the people who may not be totally up to date. In an ideal world they should be, but sadly reality is not like that. Resources in the NHS and generally in Health Care are stretched thinly. The DSN's are doing the best they can with the resources they can. If there are ones out there giving bad advice like 'fixed' doses then I agree people should take issue with them or move to another GP. There is no guarantee the care will be any better though. The only way to improve care like that is to feedback and try to change it. Ok, your shouldn't have too, but its better to be constructive than
negative.
I agree with others though before I did DAFNE I was adjusting my doses and doing a form of carb counting, the DAFNE Course just put a framework around it as well as providing a lot of other info, its NOT just carb counting.

I have also met people that don't want the bother of carb counting and just want the simplicity of fixed doses, there choice i guess !

 

[Adrienne]

Sorry I just don't agree with this. Most T2's and ever more T1's are now being treated by 'primary care' i.e GP's. The GP's mostly have DSN's and these are the people who may not be totally up to date. In an ideal world they should be, but sadly reality is not like that. Resources in the NHS and generally in Health Care are stretched thinly. The DSN's are doing the best they can with the resources they can. If there are ones out there giving bad advice like 'fixed' doses then I agree people should take issue with them or move to another GP. There is no guarantee the care will be any better though. The only way to improve care like that is to feedback and try to change it. Ok, your shouldn't have too, but its better to be constructive than
negative.
I agree with others though before I did DAFNE I was adjusting my doses and doing a form of carb counting, the DAFNE Course just put a framework around it as well as providing a lot of other info, its NOT just carb counting.

I have also met people that don't want the bother of carb counting and just want the simplicity of fixed doses, there choice i guess !

Oh well I guess we just have to agree to disagree. I can't talk about type 2 diabetes at all as I don't know about where they get care, I gather it is GP's. I can only talk about children with diabetes and out of about 500 I only know 1 child who is under their GP and that was the mum's choice because her hospital was sooooooo damned bad !

As far as I am away the majority of type 1's are under a hospital which is contracted by the PCT via the Hospitals Trust. I know for a FACT that it is the PCT's who choose where the money goes and I know a lot of robbing Peter to pay Paul comes into it. I have recently been told that all PCT's get the same amount of money for a certain condition (again I can only talk about children and diabetes here) and it is the PCT who decide where the money for the, for example, paediatric dietician goes and they may decide that that money will be better spent on another illness altogether so that team in the hospital will only get x amount of pounds whereas a good PCT will give all the money allocated to their hospital team and so that team gets y amount of money which will pay for a paediatric dietician.

This is what I know happens in many places.

What happens in GP's I have no idea but think we are all about to find out when the PCT's collapsed ! Not looking forward to that. 😱

 

[everydayupsanddowns]

I have also met people that don't want the bother of carb counting and just want the simplicity of fixed doses, there choice i guess!

But fixed doses is only half the equation isn't it.

It seems from some posts that people are being told their doses and then just sent away without any real information about what those doses might involve in terms of carbs. It seems like some folks are getting told half the story, then told off if their control isn't great.

It's not necessarily that they are stuffing their faces with cake every day, but if you aren't given some sort of support and guidance in simple carb-estimating tehniques how can you be expected eat to your dose?

 

[tracey w]

Hiya M

Well you will not believe it but if you are not taught the basics of carb counting then guess what, the advice is zero, zilch, nada, nuffink............

I have been told by many many people that they are told by their consultant or DSN, 'oh no we don't do carb counting' or 'no need to carb count, just give x for breakfast, x for lunch and x for tea and you will be fine'.

These people then don't join the forums or surf the web and sit in their nice homes just having a normal life, and when they go for their HbA1c and told it is 9.9 or 12.3 and told 'that's ok' or 'its a bit high but carry on with what you are doing'.

Seriously ! Its frightening isn't it.


yep, pretty much my story when diagnosed. Just take 12 in the morning, 16 in the evening and off you go. Just told if i hypoed to reduce set dose and yes , youve guessed it, if too high to increase, no mention of what to eat, how much, carb counting etc etc. then i found this place and I found my voice, went on to mdi, did dafne and now have a pump.

I find it really scarey that some people are still living this way and are not told any different. Its only if you ask or find things out for yourself that you seem to make any progress with the advances in treatment, or just basically how to live with diabetes.

 

[marke]

You are right, that DOES happen. It happened to me, 10+ years ago when I was diagnosed. Fortunately I was/am lucky enough to work in IT and have easy access to the internet so I just went and researched it all myself. Many people are not that lucky. Sadly we are not very good in this country at giving diabetics the tools to manage themselves, treatment in other countries is far better. I'm sure it does still happen and the lucky ones have internet access and find the info themselves. Others suffer in silence and the problem is finding them. I am invovled in my local Diabetes UK support group and it still suprises me when we get new people along to meetings how little some of them have been told about how to manage themselves. Ideally we would like to help those who are not getting good advice but its finding out this is the case. As I said before I wouldn't necessarily always blame the DSN's for this more the people who allocate the money and resources. That for me is the core of the issue.

 

[Copepod]

I was diagnosed in 1996, and can't remember being told anything about carb counting. I was put on bimodal insulin, but a friend's mother, a pharmacist in Tasmania sent me a photocopied article about basal bolus insulin regimes, so I went and asked the hospital clinic to change me over, which they did. I still don't remember being offered any carb counting advice, but worked out for myself that I needed to know out carb contents of foods and approx portion sizes, so I could adjust bolus doses. I recently found a list I wrote at the time, mentioning needing to research carb content of foods I had only eaten overseas, and hoped to do so again eg green coconut flesh and milk. All pre internet, or at least, prior my access to internet.

 

[HelenM]

This is an interesting account about diabetic diets since the 1920s.
http://onlinelibrary.wiley.com/doi/10.1002/1528-252X(200010)17:7%3C231::AID-PDI85%3E3.0.CO;2-M/pdf

It describes the lines diet in some detail. That required a lot of weighing, not just carbs(black lines) but protein and fat(red lines) as well.
The black lines were based on 10 CHO; a 2/3oz slice of bread or 2oz potatoes for example, the red lines 7.5g protein and 9g fat so an oz of lean
beef or 3/4 oz of cheese.
Weighing was done on a balance (1 penny was 1/3 oz, 1 halfpenny 1/5oz. You could buy a cutter, 4"x3"x1/3" to measure a 10g CHO slice of bread.
You were prescribed so many black and so many red lines. A typical 1500calorie diet would comprise 15 black and 10 red lines spread through 3 meals and 3 snacks.

 

[everydayupsanddowns]

Thanks Helen, very interesting...

So why on earth, if the dietary advice was so appropriate and precise in the 1920s, and it was the norm to give a basic overview/structure of carb portions required for whatever insulin dose 15 or 20 years ago do so many newly DXd diabetics in recent years get told 'no need to count' or 'we don't do carb counting in this area'. We don't DO carb counting?!?!

Has there been a measurable change in average HbA1c's since the new system of uninformation was brought in? I can feel a shouty letter to Balance coming on!

 

[Robster65]

Just catching up. My experience mirrors yours Mike. Diagnosed '78. Given a diet sheet showing individual grams per meal with an allowance for milk and a total of about 230g/day.

They worked out the dose whilst in hospital and told to eat 'starchy' foods, ie. potatoes, rice, etc as exchanges rather than biscuits and cake.

WHen swapped to actrapid/insulatard it was just a straight swap on the fixed exchanges.

When put on basal/bolus I was told I could vary times of meals and be more flexible in approach but don't miss meals unless emergency and no update on dietary advice. ALso, merely nutritional with a bit of GI thrown in for good measure. That was about 12 years or so ago. Have been offered dietician since but not explained why I should see her since I didn't need any more advice on nutrition.

We are currently counting the days to our dietician appointment on the 21st Sept after about 14 weeks wait.

I've been under GP/DSN care since I moved here in Jan. I would prefer to be under hospital clinic if they have a fully staffed team.

Incidentally, I have only ever seen one podiatrist (? foot doctor!) since dx after a request abotu 10 years ago.

Rob

 

[Copepod]

Thanks Helen, very interesting...

So why on earth, if the dietary advice was so appropriate and precise in the 1920s, and it was the norm to give a basic overview/structure of carb portions required for whatever insulin dose 15 or 20 years ago do so many newly DXd diabetics in recent years get told 'no need to count' or 'we don't do carb counting in this area'. We don't DO carb counting?!?!

Has there been a measurable change in average HbA1c's since the new system of uninformation was brought in? I can feel a shouty letter to Balance coming on!

Great idea - "those who forget the lessons of history are condemned to repeat them" (or something a bit like that!) When did HbA1c monitoring start / become regular practice?

 

[Robster65]

I think I can remember it from about mid-90s but my memory is bad and rather selective. I may have just blocked it out before then because I didn't want to take notice of it 😱

Rob

 

[mikeinspain]

Mike

If you are ready to look into Carb Counting a little, Alison over at Shoot Up suggested this to me.

http://www.bdec-e-learning.com/

I had a good look at it and seems pretty thorough. It may be of use.

 

[everydayupsanddowns]

If you are ready to look into Carb Counting a little, Alison over at Shoot Up suggested this to me.

Hi Mike

Thanks for the link. The Bournemouth course is a great resource to have linked from here.

I've been carb counting more or less since diagnosis 20 odd years ago, this thread was just an attempt to get my head around the standard approach given to newly diagnosed T1s or newly insulin-using T2s.

Many of the responses here are shocking as far as I'm concerned. It seems to me that a huge section of the diabetic community is being given little or no support in balancing the doses they are advised to take with the food they are eating.

People who are put on pumps are automatically given training in carb calculation almost, it seems, as a prerequisite. Many on MDI are just left up in the air. Given only the doses to take. Less than half of the equation.

I'm sorry but in the final analysis there's no big difference between a 6u bolus on a pump and a 6u bolus given by a pen. From the accounts I';ve read of people starting pumping (Alison included) the trickiest thing about pumping is getting the basal right. A course in carb counting will not help you one iota there.

People being put on MDI are being let down. Being told they have failed. Not being given the tools they need to keep there BGs and HbA1cs in a good place.

Pumping and MDI are very difficult therapies to get right. If you are not taught about carbs on MDI as a matter of course I don't see how you could ever succeed.