If not carb counting... then what?

Status
Not open for further replies.
everydayupsanddowns

everydayupsanddowns

Administrator
Staff member
Relationship to Diabetes
Type 1
Pronouns
He/Him
Apologies if this seems a silly question, but I keep seeing posts by T1s who are on insulin and are just being introduced to carb counting (sometimes, it seems after several years).

What confuses me is this... when I was diagnosed in 1991 'exchanges' were the thing. Suspiciously like a DAFNE style CP, an exchange was a unit of 10 grams of carbohydrate.

Even on premixed insulin, but much more when I began on basal-bolus I was told that for blah amount of insulin I would need to match that with blah 'exchanges' of carbohydrate, and here's how you work out how much food that is...

A while later I was told by a DSN that 'We don't really do exchanges any more...' but I have never been able to find out what advice is or was being given instead.

I'd be very interested to hear what dietary advice is given to people on basal-bolus that doesn't involve an understanding/method of calculating of how much there is by way of carbs in that bowl of cereal, plateful of pasta, sandwich, pork chop, lettuce leaf etc etc etc.

How were you supposed to tread the hypo/hyper tightrope?

Thanks!
M
 
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.

I have been told the above myself for years at two different local hospitals.

Infact when I met the latest DSN where we live now, she said to me 'we don't do carb counting here'. I must have looked amazed and I said 'well how the hell do you get any sort of control down here then'. Not a good start but I wasn't bothered.

Next thing I know said DSN has booked herself onto a carb counting course ! She still can't teach it. I did the last teaching session down here on carb counting for the kids' parents.
 
No! Seriously?!

That. Is. Ridiculous. Not even, "these are the foods that the insulin is working with..."?!?
 
everydayupsanddowns said:
No! Seriously?!

That. Is. Ridiculous. Not even, "these are the foods that the insulin is working with..."?!?
Click to expand...

No not at all. When I was one of the people who know no better I used to list what Jessica ate ie one weetabix, full fat milk (she was little then, very little) etc etc and I was just told 'that's fine'. Nothing about food and what it did.

I have learnt about the effects of rice, pasta, jacket pots and cheesy beans myself and through my friends on the cwd email list. We are a great resource for each other.
 
Here in France I was taught to carb count. I had lots of sessions with the dietitian in hospital when first diagnosed and also on courses later , with lots of info about the GI index and balancing meals . In spite of this DAFNE type dose adjustment hasn't reached this part of France yet.
(It has experimentally in a few areas).
Carb counting is taught but only in order to eat a prescribed amount of carbs for each meal.(mine was 50, 70-80, 60)
Dose adjustment by the patient is supposed to be minimal ie adjusting it up or down a unit for post meal exercise, premeal hypo/hyper or because the dose consistently wasn't keeping glucose levels within targets.(ie changes to sensitivity).
Its actually a very small step from there to start varying the amount of carbs in a meal and working out a carb/ratio. However, when I talked to the consultant about it, though he was OK with me doing it (he knows I get good results) he said he felt that most of his patients hadn't the motivation and many (not my words) hadn't the intellect to learn so it would be dangerous. He was horrified when I told him that there was an online course.
Apparently I'm the only one to use the bolus wizzard on my pump and I taught the diabetes nurse how to set it up a couple of weeks ago.
 
Last edited:
Does anyone else get the distinct impression that a scary majority of HCPs think of patients as mentally deficient & not able to make / worth the effort to educate & self manage?!! That Damn C4 programme is STILL bugging me, with the distinct impression that those kids hadn't been taught about the most basic of diabetes care, insulin & carbs!!! 😱😡 Grrrrr........ *skulks off back to box*
 
So is that it? People who don't get told about carb counting don't get any advice about diet/contol?
 
Just talked a bit about this on my own thread. I've just had it confirmed that I am type 1, but they said the treatment will remain the same i.e. I take a set amount of insulin at each meal, and a slow release before bed.

I am confused and thought they would start me carb counting. I'll find out more on Monday and will let you know what they say.
 
FairyNuff said:
I take a set amount of insulin at each meal, and a slow release before bed.

I am confused and thought they would start me carb counting. I'll find out more on Monday and will let you know what they say.
Click to expand...

I'll be very interested to see what they say.

If you don't mind my asking, are your doses pretty fixed at the mo? What advice have you been given about diet so far?
 
Last edited:
Well it's fixed except it keeps going up every few days, but they put that down to the pregnancy.

So it is the same amount, for days on end 22-20-24-40 and it makes no difference what I eat. I think that is how they treat type 2 typically? Maybe they don't intend to change it until after I have the baby. But my levels aren't under control, so maybe I NEED to carb count. So confusing 🙂
 
Let us know what they say now your dx is 'official'

m
 
Will do 🙂
 
when i was dx 20 odd yrs ago we used the term 'lines' wich was basicly the same as carb counting 1 line was 10g of carbs , the only difference was is that u were set to a certain ammount of lines , as a 7 yr old i had to have 4 lines for bfast , 2 lines mid morning snack , 6 lines lunch , 2 lines mid afternoon snack , 8 lines dinner , 2 lines before bed , and i was set on a dosage of insulin to cover the lines , and may i add i hypo'd a lot as a kid due to not actually being able to eat those ammount of carbs!! and because they prob didnt work with ratios then either and just set every one on the same , i was on mixed insulin actrapid and monotard and use to mix a syringe of the both 2 times a day , now its just round the other way insulin to carbs eaten and ratios , must say i prefer it this way round :D now my ratio is 1:10 and i carry my carb counting book every where lol , i wasnt taught to carb count after the lines thing i researched and bought books on it and of course surfed the net cant emagine not doing it now
 
Last edited:
Sounds very similar to my experience Bex, but several posters seem to on here with basal bolus who say they don't carb count. I don't understand this how this works...
 
when i went on dafne I was kinda following the principles unoffically for a year, but to my suprise my fellow dafne students were all on basal bolus regimes but wernt carb counting...........they were simply injecting what they thought was right, mostly trial and error.............some of the guesses were quite close, but thats really not good enough for the kind of control we all should be striving for.............i am confident that most diabetics now are aware of counting carbs if on basal bolus if not sure of how to do it, which is positive..........
 
I'm not so confident as you novirapidboi. I think there are a whole range of reasons some people don't carb count. Some have just not been given the help to do so via training like DAFNE, BERTIE or local variations. Some don't want the help because they are happy with the way they manage their diabetes. Some just don't want to confront the fact they have a condition that needs managing. There is also a huge variation in the standard of care provided by Diabetes Clinics/Support Teams, its not always fair to blame this on the Diabetes Nurses, since if they don't get the help/training they cannot teach others.
I think FairyNuff does need better advice but there might be reasons for the way she is being 'treated'. I think the best option is to ask them why you are on 'fixed' doses and get them to justify it. If there is a good reason then they should be explaining it properly. Just telling people to do things without an explination is not treatment its enforcement which is not what they should be doing. Don't be afraid to ask them, the patient is supposedly king/queen in the modern NHS and they should answer your questions properly. If anything they should be impressed that you want to take control and not rely on them.
 
marke said:
... its not always fair to blame this on the Diabetes Nurses, since if they don't get the help/training they cannot teach others. ...
Click to expand...

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?
 
I'm with you there Mike.

I think you can blame the team for appalling care whether the DSN or consultant.

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.

They should provide up to date training for DSN's and also consultants.

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 !

😛
 
Adrienne said:
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
Click to expand...

That's just it though. I'm NOT in that bracket. My team have always been supportive of my carb county diy-dafne approach.

I do have to wonder though when I hear things like "We don't really do exhcanges any more..." what advice those people were giving newly diagnosed or newly insulin using diabetics at the time.

What would have happened if I'd said, "Oh great! I don't need to worry about working our carb content of meals any more, what do I do instead?

The whole thing is so counter intuitive that it's a mystery to me.

You can't tell people to inject a substance that will REQUIRE them to eat a specific quantity of carbohydrate within a few hours to avoid hypoglycaemia (and no more than that to avoid hyperglycaemia) without letting them in on the secret!

I can't imagine someone who'd been instructing exchanges/lines or whatever you want to call them just suddenly being happy to say, "Inject away Mr patient... then eat some sort of [unspecified/unmeasured] food. Let me know how your levels go in 6 months and I'll let tell you to increase of decrease your doses (based on what criteria/information is entirely unclear)..."

I can't believe this happened, but no one seems to be able to tell me that it didn't (and isn't still happening up and down the country).

I want someone to be able to tell me I'm completely wrong about this, because the alternative is too mindbogglingly stupid to contemplate.
 
I was taught exchanges when I was first diagnosed, so was carb counting to some degree although not exactly.

As time went on, I was told they didn't do exchanges anymore either. From then on (I was on MDI at the time), it just became guess work every time I ate. However, I'd done exchanges for so long it was always in the back of my head giving me a rough idea.

It wasn't until I started talking about pumping that carb counting was reintroduced to me. I was told that for pumping, carb counting is essential.

I too am a little baffled. I suspect that, had I been religiously carb counting on MDI, my control could have been much better (although probably not as good as pumping). I harbour a suspicion that the non carb counting on MDI was the basis of a motivator for an insulin pump. My clinic are very pro-pump, so it wouldn't surprise me if they dropped the MDI carb counting in order to produce poorer results and justify a pump. However, this theory may not hold up in areas where pumps are harder to get.

Personally, I think a non carb counting approach is shocking.
 
Status
Not open for further replies.
Back
Top