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Ignorance

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
DeusXM said:
The other issue is (and this is a lot to take in) that the diet most dieticians will tell you to eat is also designed to make your diabetes treatment as complicated as possible, and make you gain weight.

Although even Diabetes UK is now ever-so-slowly waking up to the modern world and starting to realise that carbohydrate management might be something they need to think about, the majority of dieticians are still basing their information on the belief that everyone with diabetes is always 15 minutes away from having a hypo and therefore must stuff themselves with carbs all the time. I don't know exactly what your dietician has suggested to you but there is very compelling argument to be made to cut down not only on sugar, but also things like bread, potatoes, pasta etc - these things particularly cause people with diabetes to put on weight.
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My dietitian and specialist told me that I dont need to change my diet, but make sure that I focus my meals on carbs. I don't usually and make sure I do the exercise to burn it off, because I already have the base knowledge about losing weight. But I know not everyone does and feel sorry for those who don't!

I think that people should be more aware about these forums when diagnosed, because this has helped me a lot more than people shoving facts and figures at me!
 
delb t said:
To add we never found the 2 dieticians we encountered much cop- what we really needed at the start were dieticians that knew the ins and outs of sport etc not how to draw lines around a cereal bowl to save time -and I forget thankfully how many times I saw the healthy eating plate - your doing really well -keep at it
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Thank you 🙂
 
Dory said:
Hi Music&Insulin,

I would definitely advise you writing a formal complaint (either on your own or with a senior figure if you prefer). I have had a number of bad experiences with my diabetes team too and found that telephone complaints get conveniently lost in the system.

If that doesn't help, I'd definitely look around at other hospitals that could take you.

Just out of interest, what hospital are you currently registered with/where are you located?

Either way, I take my hat off to you for trying so hard and being so sensible about your diabetes. It's a hard thing to deal with and a lot of teens (myself included) have ignored management of it thinking it will all 'be ok'. So ultimate respect to you!
Click to expand...

I am thinking about doing it if nothing changes!

I've looked at other hospitals, but there are none that close, that I could get to as I have to rely on my mum for transport getting to appointments around college and work would be impossible.

I am currently at Lincoln County Hospital.

Thank you, I think I ignored it for about 2 days and refused to do my injections, but I got that ill again I realised how important it was and it made me want to sort it out again. Thank you again 🙂
 
Has anyone pointed out that at 16 you can consent to your own treatment and parental permission and/or attendance is not compulsory? On the other hand, it might help your Mum to understand the issues that you are facing if she's there to hear it for herself (particularly if she prepares some of your meals for you). And some selective copying/printing of the respones you've received here might help.
 
AlisonM said:
I'm with the folk who suggested making a formal complaint and sending copies to all concerned. You may be a "stroppy" teenager, but you also clearly know exactly what you need to do and are doing your absolute best to achieve the goals set. I suggest making a list of the issues you want to raise, keeping a food-exercise diary and taking your mum to appointments with you are all ways of ensuring you are taken seriously. From reading your posts, I can tell you are very bright and trying to work your way logically through a very complex puzzle. Don't despair, you're doing all the right things as far as I can tell, so stick to your guns.
Click to expand...

My mum comes with me to all my appointments, but as she doesn't know much about diabetes and food etc there isn't much she can really say. I only know about it from school/college/research.

I tried keeping a food diary but kpt forgetting to write in it -.- I am starting one again at the start of February though as a healthy eating thing and to keep track of insulin dose.

Thank you 🙂 I try to use logic, but I think sometimes others experiences help a lot more!
 
LeeLee said:
Has anyone pointed out that at 16 you can consent to your own treatment and parental permission and/or attendance is not compulsory? On the other hand, it might help your Mum to understand the issues that you are facing if she's there to hear it for herself (particularly if she prepares some of your meals for you). And some selective copying/printing of the respones you've received here might help.
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They said I don't have to have her there, but seeing as how the first meting we went to she sat there eating a mars bar, I think she needs the education! To her she sees it as more of a diet I have to follow when in fact, I could eat the food, but I don't want to. I am also shy, and don't like meeting new people so if she hadn't been there I probably wouldn't have gone!
 
It's such a shame for you to get such bad treatment, right at the start. I don,t agree with a lot the dietition say. I have learned more from my good friends on here. There is always someone on here ready to help and give good advice. I think you have done really well to loose a stone, well done you. We have all probably gone through similar d things, but unlike your team, here we will try our best to help you or tell you where you can get the answers. Keep coming back. It will be nice to see you progress.
 
spiritfree said:
It's such a shame for you to get such bad treatment, right at the start. I don,t agree with a lot the dietition say. I have learned more from my good friends on here. There is always someone on here ready to help and give good advice. I think you have done really well to loose a stone, well done you. We have all probably gone through similar d things, but unlike your team, here we will try our best to help you or tell you where you can get the answers. Keep coming back. It will be nice to see you progress.
Click to expand...

I think this is a lot better than going through all the hassle of doctors appointments etc. and being on here for the past few days has helped me more than they have in the past few months! Everyone should be told about the forums, I found this by accident
 
One of the lucky stars I count every day is that I didnt have diabetes in my teens. Being diagnosed diabetic - well, the years following it - is one of the hardest things ice ever had to cope with and I can't imagine how I'd ever have coped with that - without my husband, my friends, my supportive network and oodles of self confidence I just didn't find until my teens were well behind me. So RESPECT to you for finding courage to fight through this. It WILl be worth it.

So first off, while it seems a case of just doing 'X Y and Z' to people who sit in rooms and think about it, it's huge and emotionally traumatic in real life.

Second, if you are not getting the support you need, you are quite entitled to
Change hospitals. It depends where you live how way this is for you, but your needs are: e-mail advise and someone who could separate any weight issues you might face from your diabetes: if you are type one, these are 2 separate things! - and given type 1 diagnosis is bloody hard at the best of times, and loosing weight is hard, you're in for a battle and need support you feel happy with. If not hospitals can you change consultant?
If 800 other people are happy with your department, that's fine: vYOU need to click with them.

Third, you CAN eat sugar if you are type 1. If you are type 2 it's different. I think you know that. Just don't make it harder than it has to be

And four: ignore me if it's not helping. But good luck and I hope you find a support network that works for you soon. Don't loose hope, it's going to be a fight but you can do it.
 
Last edited:
I was just thinking about insulin and weight gain.

When diabetes is back under good control, it is normal for your weight to be higher on the same diet. This is because the 'illness' of high blood sugars (not being able to burn the sugar in you blood, burning fat and protein instead) makes your muscles 'artificially' wasted.

So when I was diagnosed I was very underweight for me (though maybe not for other people) and my weight went up with insulin.

This is HEALTHY and means your body's working again; it needs to happen. don't let it get you down if you're also trying to loose weight for healthy reasons. THAT weight -the weight of any excess you might carry - will come down.

So the OVERALL effect might be a slight rise or no change at first, DON'T let it get you down. That's healthy.

You will loose the weight eventually











So at first, if your weight SEEMS to be staying the same, it may be that
 
Lizzzie,

that's not quite right. It's not that the body can't 'burn' the sugar in the blood, it's that there is too much of it there and the body does not receive the necessary signal (ie the insulin) that tells the body to remove the sugar from the blood and take it to the liver to be converted to glycogen.

Also, the term 'artificially wasted' is not the best description; all that is happening is - as you point out - your body seeks to use fat and protein stored in your muscles for energy instead. This is exactly the same priciple as someone going on a very low cal diet - and we wouldn't call a successful dieter someone with artificially wasted muscles 🙂

The link below explains it quite well:

http://www.livestrong.com/article/329555-why-do-people-with-diabetes-lose-weight/
 
Lizzzie said:
One of the lucky stars I count every day is that I didnt have diabetes in my teens. Being diagnosed diabetic - well, the years following it - is one of the hardest things ice ever had to cope with and I can't imagine how I'd ever have coped with that - without my husband, my friends, my supportive network and oodles of self confidence I just didn't find until my teens were well behind me. So RESPECT to you for finding courage to fight through this. It WILl be worth it.

So first off, while it seems a case of just doing 'X Y and Z' to people who sit in rooms and think about it, it's huge and emotionally traumatic in real life.

Second, if you are not getting the support you need, you are quite entitled to
Change hospitals. It depends where you live how way this is for you, but your needs are: e-mail advise and someone who could separate any weight issues you might face from your diabetes: if you are type one, these are 2 separate things! - and given type 1 diagnosis is bloody hard at the best of times, and loosing weight is hard, you're in for a battle and need support you feel happy with. If not hospitals can you change consultant?
If 800 other people are happy with your department, that's fine: vYOU need to click with them.

Third, you CAN eat sugar if you are type 1. If you are type 2 it's different. I think you know that. Just don't make it harder than it has to be

And four: ignore me if it's not helping. But good luck and I hope you find a support network that works for you soon. Don't loose hope, it's going to be a fight but you can do it.
Click to expand...

Haha I was glad that I missed my GCSE's just, if I had been diagnosed then I would have been screwed. I think it helps being more mature than I probably should be as my siblings are a lot older than me, and well my mum is 60!

I don't think I can change hospitals as there are none near, but I will look into changing consultant, I did ask to be kept in the children's ward, because they didn't try and merge them both together and listened to me a lot more. But I guess it was too much hassle and would cost too much to keep me there haha.

I know i can eat sugatr, I do have it occasionally with friends. I found it hard enough to lose weight before I was diagnosed, so if I have the mindset that I can't eat it, then hopefully losing weight will be easier. I have to get fit for the 22 mile swim I'm doing in a few months!

I think everyone on here helps, even the tiniest bit helps when you go through something like this! Thank you for replying 🙂
 
Dory said:
Lizzzie,

that's not quite right. It's not that the body can't 'burn' the sugar in the blood, it's that there is too much of it there and the body does not receive the necessary signal (ie the insulin) that tells the body to remove the sugar from the blood and take it to the liver to be converted to glycogen.

Also, the term 'artificially wasted' is not the best description; all that is happening is - as you point out - your body seeks to use fat and protein stored in your muscles for energy instead. This is exactly the same priciple as someone going on a very low cal diet - and we wouldn't call a successful dieter someone with artificially wasted muscles 🙂

The link below explains it quite well:

http://www.livestrong.com/article/329555-why-do-people-with-diabetes-lose-weight/
Click to expand...

There actually isn't too much sugar, it is that the sugar cannot be used. It cannot break the 'barrier' into the cells to be used as energy. The insulin is what 'opens the barrier', kind of like a key opening a door.

🙂
 
Sorry, Ive read your thread over the past couple of days and cannot recall if you have had structured education. Learning to adjust insulin due to carb intake and exercise would be highly valuable in terms of control of diabetes and weight
There is an online programme - if you look at bdec ( Bournemouth diabetes education centre) then you should find it
I second what others have said- the dietary advice about basing meals on carbs is unhelpful to your weight and potentially to your blood sugar control as well- higher levels, more insulin, increased tendency to drop too low- but you ned to be able to safely adapt your insulin doses

You sound very mature and determined - many teenagers would just give up and sulk given the lack of positive input from healthcare professionals
Keep fighting
 
Abi said:
Sorry, Ive read your thread over the past couple of days and cannot recall if you have had structured education. Learning to adjust insulin due to carb intake and exercise would be highly valuable in terms of control of diabetes and weight
There is an online programme - if you look at bdec ( Bournemouth diabetes education centre) then you should find it
I second what others have said- the dietary advice about basing meals on carbs is unhelpful to your weight and potentially to your blood sugar control as well- higher levels, more insulin, increased tendency to drop too low- but you ned to be able to safely adapt your insulin doses

You sound very mature and determined - many teenagers would just give up and sulk given the lack of positive input from healthcare professionals
Keep fighting
Click to expand...

My diabetes team haven't really taught me anything that I didn't already know from school and personal research (type 2 runs in the family, I'm just the odd one out!) At the moment I am just experimenting, to get used to how food and quantities change my bg.

I'll have a look at that, thank you 🙂 My diabetes team seem to be trying to get me to stick with the hospitals clinic and nothing else, they haven't told me about any of this, which is why I am glad I am on here!

I think I am managing to sort my insulin doses out, the only time i have had hypos is when I've been a typical teenager and stayed up till the early hours of the morning!

I did sulk, for about the 2 days my body would let me, refused to do my injections etc. But I became so ill again that it kicked my butt into sorting it out! The only thing keeping me going now is helping others, and planning to raise money for Diabetes UK!
 
Music&InsulinSavedMyLife said:
There actually isn't too much sugar, it is that the sugar cannot be used.

🙂
Click to expand...

yep. however

sugar cannot be used = too much of it there (ie in the blood) 😉

but you sound very clued up about it all. One thing I was thinking about on the train to work this morning: wish I'd chosen a career in biology; wouldn't have to have a separate set of knowledge for my work and personal life then. much easier for my poor brain ! :D
 
Dory said:
yep. however

sugar cannot be used = too much of it there (ie in the blood) 😉

but you sound very clued up about it all. One thing I was thinking about on the train to work this morning: wish I'd chosen a career in biology; wouldn't have to have a separate set of knowledge for my work and personal life then. much easier for my poor brain ! :D
Click to expand...

Well it can be used, but can't be converted (hence the need for insulin) 😛
I did a GCSE in Biology, and luckily enough we did learn a little bit about Diabetes!
Haha, luckily Hospitality and Diabetes links with each other, so that helped me a lot!
 
Hee hee, Biology O level - iodine test for starch !!!!!

I never realised in 1963 that I'd ever need that kind of info in 1972 !
 
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