struggling with carb counting

[Freddie99]

Hi 1997,

I don't check about two hours after meals. I probably should. You probably have a point that my bloods between meals might be higher than they should be. My consultant is happy with my HbA1C but we both know it should be lower.

Tom H

 

[diagonall]

Hi 1997,

I don't check about two hours after meals. I probably should. You probably have a point that my bloods between meals might be higher than they should be. My consultant is happy with my HbA1C but we both know it should be lower.

Tom H

Tom,
If your consultant is happy with an HbA1 of 8.7% then ditch him/her.
S/he is doing you no favours at all.
I am horrified that your consultant is happy with that A1c 😱
All you are doing is kidding yourself.
In a few years time when the complications set in you will be saying I wish I had looked after myself.
Take the bull by the horns and control your diabetes and not let the diabetes control you.

 

[Freddie99]

Ahem Sue, at eighteen it is a little hard to get things perfectly under control and even after thirteen years I'm still learning every day.

Tom H

 

[tracey w]

Hi Tracey, with me it does depend on the food type being eaten. But yes you can go up to 2 hrs later. That's for pizza and pasta. There is no exact science to it. You have to find what works for you. I use a 40/60% split over 1 1/2 hrs when I eat pasta this works fine for me. Look up the profile of your bolus insulin and see when it peaks for optimum control. Keep a diary of what you did and the result. This way you can work out what works and what doesn't work.

thanks, i will try this when i have a large meal, usually evenings for me

 

[tracey w]

People who are more active tend to have a lower basal so don't worry about it. You need what you need for your life style 🙂
The 500 rules is great as it gives you a fairly good guess as to what you require and then you can tweak it to your own needs.
Your basal doesn't sound quite right from what you are saying. Have a go at the basal test. Then you can see what is going on.
Do you split your basal? Many people find that Lantus and Levemir do not last 24/7
So again worth considering, have a talk with your team and see what they say.
If they unhelpful ask for a pump 🙂

Sue

thanks again. have read about basal testing a bit, is it where you have a carb free meal and no insulin and see what bs results are? I have actually gone without lunch a couple of times as i work shifts and just didnt fit in, have found bs rise slightly, is this the same thing?

i would love to try a pump but know going about is is probably going to be a nightmare. Am going to ask about though next time i reach dns. Last time i got a reply was only because i was in tears of frustration on the phone, miraculously someone was available ( I know it was only because i was upset though). thanks for all yur help

 

[1997]

Hi Tom, I think the age you're at is one where, make no bones about it, control is harder and it's really good that you are keen to look at how you're doing. Several years ago, when I was your age, i was starting to neglect my type 1. it's a good sign you're keeping your mind on how you're doing.

I think consultants tend to look at teenagers and even those, like me, in their mid-twenties and think, well an A1c of 7% or 8% is ok because most of their patients of that age are often doing worse.

The truth of the matter is that those of us who have had it a while (I've had type 1 for a similar length of time as you; 15 yrs as opposed to about 13 yrs) can't afford to spend too much of our lives being high.

I've found that many consultants tend not to be very strict, and this is probably exaggerated around teenage years. They don't want to jump on you and i think the fear is that you may start to fix results. I used to do this despite the fact that my consultants were too easy-going with me anyway.

i don't think consultants are really happy to see high results but it's something that's become a part of the culture. if you sit with your consultant and say, "you know i'm really not completely happy with the A1c results i've been getting.", you'll probably find they agree with you and start to work with you to find some solutions.

if however, your consultant actually disagrees with you and says that they're "perfectly fine" and refuses to accept that there's some work to be done, then it's worth seeing if you can see a different consultant. however, be aware that sometimes this may always not be possible.

i'm lucky that nowadays i have a choice of two consultants (one good and one bad, in my opion) but just over a year ago there was just one consultant, and unfortunately, he wasn't the good one.

currently my clinic lets me choose which consultant i see and for that i'm thankful. i don't know what rights we have to get see a different consultant when there isn't a choice though.

fingers crossed that your consultant is the kind that will respond well and will work with you improving your overall control.

it may not be the first appointment that sees a difference but if you let your consultant know that you're keen to improve your control, then i think it's reasonable to expect your consultant to offer some advice and solutions by the following appointment. this is just based on what i'd find acceptable though.

 

[diagonall]

Ahem Sue, at eighteen it is a little hard to get things perfectly under control and even after thirteen years I'm still learning every day.

Tom H

Ahem Tom, No one is perfect or expecting you to be perfect.
But your A1c is more than double that of a none diabetic.
Yep even after 44 years of diabetes I am still learning.
At 18 you should be down a lot lower than you are.
A realistic level to aim for is 7%
It's your choice what you do about it. After all it's your eye sight/kidneys/limbs that are at stake not the consultants or anyone elses.
You have the info at your finger tips to help yourself.
As I said before if your consultant thinks that's OK then time to ask for a referal to another consultant. You are entitled to that 2nd opinion.
Younger children than you are expected/encouraged to have lower A1c's than you have.
Please don't leave your wake up call until you have eye damage.
There is a 20 year old on another forum who has damaged his heart due to high A1c's he also has eye damage. He has been type one since the age of 13
Unfortunatly he didn't heed what he was told. He is also now in panic overload due to the enormity of whats going to happen to him has hit home.
Complications wait for no man.

 

[diagonall]

thanks again. have read about basal testing a bit, is it where you have a carb free meal and no insulin and see what bs results are? I have actually gone without lunch a couple of times as i work shifts and just didnt fit in, have found bs rise slightly, is this the same thing?

i would love to try a pump but know going about is is probably going to be a nightmare. Am going to ask about though next time i reach dns. Last time i got a reply was only because i was in tears of frustration on the phone, miraculously someone was available ( I know it was only because i was upset though). thanks for all yur help

Hi Tracey, this is the link for basal testing. It explains things a lot better than I can
http://www.diatribe.us/issues/13/learning-curve.php

RE. the pump. Have you read the guidelines? If you qualify do not take no for an answer. Ask for a referal to a pump consultant at another hospital if you have too. They are well worth fighting for.
http://www.nice.org.uk/nicemedia/pdf/FinalAppraisalDeterminationIP.pdf

Sue

 

[1997]

I checked all the labels of things I usually tend to eat, added them up and found that the amount of carbohydrates I was eating each day totalled 330g.

Today I managed to stick to eating a total of 65g. That's less than a fifth of what I would usually have in a day.

Just in case anyone's interested, I had

breakfast: greek yoghurt + sliced and crushed brazil nuts - 10g
I went shopping in the morning so didn't even have to inject and knew there was no chance i was going to end up very high

lunch: turkey and vegetable casserole with mixed beans - 35g
took 5 units (i usually inject at least 13 for lunch)

tea time: cauliflour cheese - 20g
took 3 units

So i've gone from injecting at least 35 units of short acting down to just 8 units today.

It's made a big difference to my sugar levels. Before I was playing a lottery of results between 3.0 and 10.0. On reduced carbs my levels are playing a much tighter game. I've been below 6.0 for every test I've done today (includes post meal tests).

When you're having just 20g carbs for a meal, you've got to have something pretty out of the ordinary happen for your figures to jump too far out of range.

This is just day one of starting to try a low carb diet but it's already looking like a no-brainer.

The only question I can't figure out is why it's taken me 15 yrs to realise this?

 

[Copepod]

HbA1c - not the be-all and end-all

Tom & Sue

Can I raise the thought that, while HbA1c is important, other things are equally important in a person's life? In fact, I suspect that HbA1c gets most emphasis because it's easy to measure - and it's a scientific principle that things that are easy to measure then to get get measured, rather than the most important, but more difficult to measure, things. The diabetes clinic I attend doesn't record even estimates of activity levels, and while they record body weight, they don't record what clothes are being worn, nor record hieght accurately - many people think they are several cms shorter or taller than they really are, as I discovered when working on Gateshead Millennium Study, weighing and measuring skinfold thicknesses, heights, waists, hips and body composition of children born 1999 - 2000 and their mothers.

I didn't have diabetes as a teenager, although I did have the great pleasure of having a lad, with diabetes, aged about 18 years in my "fire" (group) on a 6 week expedition in South Greenland. If I think back to my teenage years, I know what was important to me - and, I think, gave me many skills etc that I am still using now. As well as gaining O and A levels (as they were then), I gained qualifications in first aid, lifesaving, Guides, Sea Rangers and Duke of Edinburgh's Award Scheme, learned hill walking, mountain weather, caving, kayaking, sailing etc, cycled lots around local countryside with friends my own age and blind men on tandems, made & shifted scenery for Gang Shows and pantomimes, went on 6 week expedition to Greenland and Iceland, spent a summer teaching archery & mountain activities, then a few weeks as a postman, so I earned enough to spend 4 months travelling in the Middle East and Europe, returning just in time to start my nurse training, and beginning a "career" in writing, intitially travel articles for free magazines I found in London etc.

So, my take on the situation is, while Tom's HbA1c could be better and he should work towards this, there are many other important aspects of his life - education, youth groups, sports, friendships, travel etc.

 

[aymes]

Can I raise the thought that, while HbA1c is important, other things are equally important in a person's life?


So, my take on the situation is, while Tom's HbA1c could be better and he should work towards this, there are many other important aspects of his life - education, youth groups, sports, friendships, travel etc.

Seconded!

I think we all draw our line somewhere differently for that balance of what is important and the impact that has on our diabetes. It's certainly taken me a long time to find my balance between keeping my diabetes in check but drawing the line where I don't want to make certain sacrifices. For example I have total admiration for those of you who stick to very low carbs, and it is something I have done in the past with great effects but it's not something I feel I want to do all the time. So my 'buy off' is that I go for low GI where I can and do a lot of running, most of the time this works.....!

 

[Adrienne]

Hi

I won't preach to anyone, I don't believe in it, I just want to help everyone that I can with diabetes, especially children. My daughter is nearly 9 and had her first insulin injection at 5 weeks old, she had her pancreas removed. I know lots about diabetes in children (type 1), and often help newly diagnosed parents.

I 'met' Tom at the Facebook DUK site a month or so ago (you probably don't remember me Tom) but I am amazed you are only 18. You have a very wise head on your shoulders and you said some terrific things to help others on the facebook pages. You also asked the question about pumps, should I or shouldn't I.

For an 18 year old who is obviously interested in his diabetes and also helping others, I think in these last few messages of yours and other's replies you have now answered your own question. You should. You HbA1c could be better, yep we know that, as could my daughters and she is pumping. But to have the ultimate freedom of a type 1 diabetic to do these things that a teen and young 20 year old wants to do (except the drinking), then pumping is the way to go. I can't stress enough how easy you will find it and how much freedom there is. It is strange to begin with to have this thing part of you but my daughter and everyone I know wouldn't be without it.

I hope that when my daughter reaches your age, she will be as level headed, friendly and cheerful as you are Tom, personally I think you are an inspiration to all the type 1 teens out there. Good on you, go get your pump, you qualify. Don't dither any longer.

Take care
Adrienne 🙂

 

[Adrienne]

Ooo just want to add that my last post wasn't supposed to be patronising, so please don't read it like that, I am quite a bit older than you, Tom, and I meant every word.

Adrienne

 

[Northerner]

Ooo just want to add that my last post wasn't supposed to be patronising, so please don't read it like that, I am quite a bit older than you, Tom, and I meant every word.

Adrienne

Well said Adrienne - Tom I think you are a credit to your generation and a real asset to this group. 🙂

 

[Freddie99]

Wow, Adrienne, Northerner,

Thank you. I'm trying to avoid blushing here 🙂

Copepod,

Good point, I do have other things to get on with in my life. The most important thing to me is to not let diabetes get in the way of my life in any way.

Thank you again,

Tom H

 

[Freddie99]

Hello again,

Out of curiosity, I've read that being on a pump reduces the daily insulin intake? How true is this? I know that I would have to become more active (well, I'm starting more active now, my running has started up again) Seeing as I'm on 49 units of Levemir per day and 46 units of novorapid per day would my needs for this go down? I know that I would have no need for the levemir due to the way that I would be constantly recieving the novorapid.

Thanks,

Tom H

 

[diagonall]

Good point, I do have other things to get on with in my life. The most important thing to me is to not let diabetes get in the way of my life in any way.

The trouble is Tom with your A1c as high as it is it's not today you have to worry about it's the tomorrows. And mark my words diabetes will get in the way of your life in a big way unles you bring down your numbers.
This is what is concerning me big time with you.



Tom H

Hello again,

Out of curiosity, I've read that being on a pump reduces the daily insulin intake? How true is this? I know that I would have to become more active (well, I'm starting more active now, my running has started up again) Seeing as I'm on 49 units of Levemir per day and 46 units of novorapid per day would my needs for this go down? I know that I would have no need for the levemir due to the way that I would be constantly recieving the novorapid.

Thanks,

Tom H

Some people do reduce their insulin requirements others don't. Some infact need more due to getting to free with the bolus's and food intake.
You wont be able to have a pump though Tom until you learn to carb count and put it into practice with MDI.
You will be expected to keep a food diary insulin and blood sugars all recorded too for at least 6 mths. If you can't wont do this then They will just say you are not commited enough to pump.
A pump is no easy fix it's a lot of hard work and you do have to know what you are doing with your insulin. IE, carb counting/ratio's/corrections.
If you are serious about pumping you need start sorting yourself out now so that you have everything in place before you go to uni.
Missing uni for carb counting courses will not be good 🙄 I have no idea where your uni is compared to home. But if it's a dif PCT it will be a new consultant new funding issues.

Have you seen/bought the book pumping insulin? If not buy it and read it then you will see what is involved.

 

[AJL]

I couldn't agree with you more. I have had diabetes for 38 years and I do work hard to maintain control - but it is also about balancing it with other things in my life. In my case with regard to my career, my home and other interests in my life. My "best" HBA1C (I think in my life) has been 7.4/7.5 and that has been with a lot of hard work. I know that personally, due to the ad hoc nature of my life, that when I try to keep control even better that I have too many low sugars that impact upon what I do. I certainly can't risk having a hypo in the middle of giving a lecture to a large number of students so when I am teaching I have to keep my sugars higher etc

We are all aware of the complications that diabetes can cause but also that we are all different with regard to how we balance the diabetes. In my opinion, after a many years of experience of different things in life, I would say control your diabetes as best as you possibly can but balance that against the other areas of your life - life is for living.

 

[tracey w]

Hi Tracey, this is the link for basal testing. It explains things a lot better than I can
http://www.diatribe.us/issues/13/learning-curve.php

RE. the pump. Have you read the guidelines? If you qualify do not take no for an answer. Ask for a referal to a pump consultant at another hospital if you have too. They are well worth fighting for.
http://www.nice.org.uk/nicemedia/pdf/FinalAppraisalDeterminationIP.pdf

Sue

thanks Sue, have read guidlines several times. My HbA1c has never been under 8 in the year i have been diabetic, and to be honest i will be shocked if it is much lwer on my next visit, next month. If not I think i have a good case for a pump as really trying on mdi. Tried to reach dsn again today but no call back (not unusual). I am fully prepared to tell my consultant that i dont feel i have had any guidance since going on mdi and i hope he will listen.

will re look at info on basal testing again, cheers

 

[tracey w]

thanks Sue, have read guidlines several times. My HbA1c has never been under 8 in the year i have been diabetic, and to be honest i will be shocked if it is much lwer on my next visit, next month. If not I think i have a good case for a pump as really trying on mdi. Tried to reach dsn again today but no call back (not unusual). I am fully prepared to tell my consultant that i dont feel i have had any guidance since going on mdi and i hope he will listen.

will re look at info on basal testing again, cheers

Hi again sue, have read the info on basal testing again. It is very interesting and can see why its important. But am a bit confused as it meant for fine tuning when on a pump? which i am not.

Also, i would not find it a problem to do the overnight test but as for the others not sure how i would go without all those meals and feel ok, i am very active and my days off are always split, (IE not two together), not sure when i would find this easy to do. if on a pump and not working for a week i would have no problem with this though.