Recent Posts - DAFNE Online

Jan 9, 2011

hld1904 5 posts

Has anyone found their weight has gone up since following DAFNE? Spoke to my GP who specialises in Diabetes and he told me people often find their weight increases due to better control and CP's being equal to Insulin doses! Great start to the New Year!

Jan 9, 2011

hld1904 5 posts

Topic: General Discussion / Am new...And 'RECOVERY'

I know what you mean. I have been type 1 since age of 3 and have had a lot to deal with too. I suffered domestic violence form my father and tried to stay away from him by putting myself in hospital using my insulin to do so. I was also Bulimic. I was told i was Brittle Diabetic. That has followed all my life and i eneded up in violent relationships too. I am 43 this year and have finally found a decent man and am only now able to talk about using my diabetes to 'protect' myself. I can finally admit i deliberately overdosed with insulin or other times stopped taking it completely. I have had laser eye treatment, Ulcers and loss of feeling in my feet. My kidneys are beginning to show signs too. I know i am lucky compared to what i could be suffering from by now but there is nothing i can do to change that now. I have graduated from DAFNE and have got my HbA1c into single figures for the first time in 25 years.
It has taken me 40 years to finally settle and take control and i will never go back to those ways.
Life is what you make it and i intend to live mine to the full from now on!

Jan 9, 2011

luisafontana 9 posts

Topic: General Discussion / Brittle Diabetes

This might sound like a dumb question as you might test for it all the time, but I noted in your example day's readings (and I realise it's only an example), that you said you'd gone to bed fine - then at 4am it was at 16, and then it was difficult to get down after that. Is it possible that you've suffered from the dawn phenomenon, which I'm given to understand produces exactly those effects? Again I realise it was just an example and could have been a coincidence but from reading in forums elsewhere, if that's what's causing you trouble it tends to make problems for you throughout the day due to the effect of everything your body does to counter the hypo during the night and the other hormones it releases to wake you up. I don't get it because of the times I work and sleep so I'm lucky. Do you test between 2-3am to see if you're having hypos?

Jan 8, 2011

emmahope 17 posts

Topic: Carbohydrate Counting / calories affecting insulin required?

HI Helen, thanks for that.It's reassuring to hear -when I've put it to hcps they just dismissed it, which gave me a sense that 'whatever I do I cant get it right'.I'm looking forward to doing DAFNE 2nd week of February,a bit trepidatious but I'm sure it will be great to compare notes with others living with other type ones. Best, Emma

Jan 8, 2011

HelenP 218 posts

Topic: Carbohydrate Counting / calories affecting insulin required?

Hi Emma,

I have done DAFNE and one of the things that has really hit home for me is that we are all different...for example I need to count two chicken drumsticks as 1CP. When I raised this as a theory with the dietician she confirmed that 150g of protein (more than I usually have) may very well need to be "covered" by a small dose of insulin. I also steer away from fat calories as they also have a crucial (and disproportionate) effect on my BGs after meals. I believe it has something to do with fat effecting glucose absorption....or something. Are you booked in to do DAFNE? I found it unbelievably informative and as it gave me more answers I am much more conscious of the whole diabetes situation. Good luck.
Helen

Jan 7, 2011

dougie70 2 posts

Topic: General Discussion / HAPPY NEW YEAR

happy new year everyone

Jan 7, 2011

marke 686 posts

Topic: DUAG Committee / PCT response letter

Annette, good letter ! It will be very interesting to hear the response if they can come up with one ;-)

Jan 7, 2011

emmahope 17 posts

Topic: Carbohydrate Counting / calories affecting insulin required?

I havent done DAFNE yet but am following principles as far as I know them.Do others notice that its not just cps that affect insulin requirements but non carbohydrate containing calories too? This is the case for me,borne out of experience. Thanks

Jan 6, 2011

Simon 578 posts

Topic: General Discussion / Great video - worth a watch

I'm sure we've heard all of the silly comments in this video at least once in our diabetic lifetimes:

What NOT to say to the parent of a Type 1 Diabetic

Enjoy!

Jan 5, 2011

MikeH 9 posts

Topic: Carbohydrate Counting / prawn crackers?

useing the iphone app "carbs and cals" it gives 20g carbs for 35g of prawn crackers

Jan 5, 2011

Carolin 83 posts

Topic: Carbohydrate Counting / prawn crackers?

Using info from supermarket prawn crackers, approx 6 crackers (20g weight) is 1CP
Good luck!
Smile

Jan 5, 2011

Annette Bell 72 posts

Topic: DUAG Committee / PCT response letter

Hi folks! Mark has kindly sorted this so I can send you a copy of the letter I have finally sent to my PCT in response to their letter. Here is the link:
PCT response.doc

Jan 4, 2011

emmahope 17 posts

Topic: General Discussion / Am new...And 'RECOVERY'

I know many of us with this disease have had periods of struggling to accept this condition. I wonder whether there are others who have dealt with related (for me) issues also: Have others grown up with diabetes which was abused by carers or have needed to go through a recovery,perhaps, with eating disorder like me- or have recovered from using diabetes as self harm? I"m now in recovery but the history has left me with complications.I do at times struggle with acceptance with what this disease has brought and does bring but it has also been a journey of spiritual and emotional/mental growth and lessons.

Jan 4, 2011

Simon 578 posts

Topic: General Discussion / We'll be upgrading soon

Upgade complete - topic locked.

Jan 4, 2011

Broady 13 posts

Topic: General Discussion / Brittle Diabetes

Hi adamrit
I was put on a continuous glucose monitor last year, when I had the results the specialist nurse and myself went through them and altered my basal rates to suit. With a bit of tweaking and a lot of hard work it paid off and my bloods have been very good since the alterations. I hope everything works out for you and let me know how you get on

Jan 4, 2011

adamrit 4 posts

Topic: General Discussion / Brittle Diabetes

Dear Broady
I've been on the pump (medtronic 512 and now the Veo) for nearly 5 years. It has reduced my bad hypos very considerably but my Hba1Cs are a little bit higher than before the pump and DAFNE (at between 7- Cool

. I test my blood about 8 times a day with an Ascensia Breeze II (very quick and handy) and I think that if I didn't test so much, the hypos would be much more severe, so the pump may not be the reason for fewer hypos, just the extra testing. On the other hand, I love the pump for one canula injection every 3-4 days instead of 4 injections a day and now not having to get out an insulin pen all the time.

I just don't understand why, following DAFNE carefully and having a pump and using it carefully, my diabetes doesn't follow the rules. My insulin sensitivity alters from hour to hour, sometimes 3 units of QA (via pump) brings my bloodsugar down by 2-3 mm m'l and sometimes 1 unit brings it down 5 mm m'l. This is a huge difference in sensitivity and for no reason I can see.

Is there any research into this sort of irregular diabetes? I will be trying continuous glucose monitoring from next week for a while to see if it reveals more accurately the relationship between insulin, food and exercise in me as you can record all three factors on the pump. There may be some pointers to better control.

Regards

Jan 3, 2011

Broady 13 posts

Topic: General Discussion / Brittle Diabetes

Dear adamrit
When I was on injections I to was suffering the same problems as you. No patterns with my blood sugars and having a lot of hypos. Then 3 years ago I was given a medtronic paradigm 522 insulin pump and it has made a vast improvement with my blood sugars. My last Hba1c was 6.8 the best i've ever been. I have had diabetes for 42 years and having the pump was the best decision I have ever made, I would recommend if given the chance of having a pump to take advantage and give it a try. Hope you have the same success as I did, all the best

Jan 3, 2011

adamrit 4 posts

Topic: General Discussion / Brittle Diabetes

I was told I had "brittle" diabetes 54 years ago and also again a few months ago. For me it means having no idea or way of anticipating how I will react to insulin or food or exercise in terms of blood glucose levels. I try fairly desperately hard to control my Type 1 diabetes, but to control it my body must have a consistent response to insulin, carbo intake and exercise, which it doesn't. I think that is described as "brittle" diabetes. Some diabetic doctors say 7% of their patients are brittle and some say 10%. I have just been issued with a Medtronic Veo with continuous BG monitoring which I will start to use when I receive training next week.

As my BG results are so chaotic, diabetic doctors always look at any pattern that lasts for 2 days and seem to give advice on raising or lowering insulin dosage on the basis of those two days ignoring the highs and lows of all the other days at those times. It must be nearly impossible to avoid giving this advice because it works for people with regular diabetes. You are seriously lost without patterns. To repeat, I weigh most of my food and relate the insulin boluses and basal dosage to the food and the amount of anticipated exercise. If my diabetes was regular, I would be a DAFNE star patient, but it isn't and I'm not.

I can't go down the transplant route because I grow most of my veg and fruit and the transplant drugs increase your skin cancer likelihood by 26 times and I cant or wont work the ground in a hat, long sleeves and gloves. I am hoping that the continuous interstitial glucose monitoring (plus frequent blood glucose tests) will find some patterns reliable enough to make intelligent changes and better control, though I am not advised to be confident in this.

It is disheartening to have "brittle" diabetes and so little possible control. With the pump and blood glucose testing 8 times a day, I can limit the worst hypos and hypers, but it is always living on the edge. On the other hand, 54 years of it with only one episode of a hypo leading to emergency treatment at hospital, no serious eye or foot problems, no ketone bad results, can't be considered too bad for normal diabetic let alone a brittle one.
Regards

Jan 2, 2011

Simon 578 posts

Topic: General Discussion / We'll be upgrading soon

Hi all,

Just to let you know, we'll be upgrading our servers sometime soon (in the next week) - we'll aim to do this at night (UK time) to avoid inconvenience for the majority of users, however the process may take up to 24 hours. When the upgrade is in progress there will be a notice on the site, and you won't be able to access your diary, the forums or other features.

The reason for this is that we need to provide a faster and more robust service for our users - so the downtime is necessary.

Apologies for any inconvenience!

Simon

Jan 2, 2011

Simon 578 posts

Topic: Site Development / Printing - Meals alligned

Hi Anna, thanks for your feedback. In the past we've found that pretty difficult to do - as different people store different numbers of results. I'll see what we can do and get back to you.

Simon

Jan 2, 2011

AnnaM 2 posts

Topic: Site Development / Printing - Meals alligned

Is there a way of printing the results for a week with all of the breakfasts, lunches, dinners, etc... below each other, so that when the specialist at the hospital reviews the data they can easily see any trends. This was how it was laid out when I did the course and the hospital said it was very important to have it like this. Thanks

Jan 2, 2011

AnnaM 2 posts

Topic: Site Development / Printing - Meals alligned

Is there a way of printing the results for a week with all of the breakfasts, lunches, dinners, etc... below each other, so that when the specialist at the hospital reviews the data they can easily see any trends. This was how it was laid out when I did the course and the hospital said it was very important to have it like this. Thanks

Jan 1, 2011

Simon 578 posts

Topic: General Discussion / HAPPY NEW YEAR

Thanks saxman, Happy New Year to you and all DAFNE Online users!

Dec 31, 2010

saxman 28 posts

Topic: General Discussion / HAPPY NEW YEAR

I WISH ALL READING THIS A VERY PROBLEM FREE NEW YEAR AND WISH YOU ALL YOU WISH YOURSELF,

Jan 9, 2011 hld1904 5 posts	Topic: General Discussion / Weight Has anyone found their weight has gone up since following DAFNE? Spoke to my GP who specialises in Diabetes and he told me people often find their weight increases due to better control and CP's being equal to Insulin doses! Great start to the New Year!

Jan 9, 2011 hld1904 5 posts	Topic: General Discussion / Am new...And 'RECOVERY' I know what you mean. I have been type 1 since age of 3 and have had a lot to deal with too. I suffered domestic violence form my father and tried to stay away from him by putting myself in hospital using my insulin to do so. I was also Bulimic. I was told i was Brittle Diabetic. That has followed all my life and i eneded up in violent relationships too. I am 43 this year and have finally found a decent man and am only now able to talk about using my diabetes to 'protect' myself. I can finally admit i deliberately overdosed with insulin or other times stopped taking it completely. I have had laser eye treatment, Ulcers and loss of feeling in my feet. My kidneys are beginning to show signs too. I know i am lucky compared to what i could be suffering from by now but there is nothing i can do to change that now. I have graduated from DAFNE and have got my HbA1c into single figures for the first time in 25 years. It has taken me 40 years to finally settle and take control and i will never go back to those ways. Life is what you make it and i intend to live mine to the full from now on!

Jan 9, 2011 luisafontana 9 posts	Topic: General Discussion / Brittle Diabetes This might sound like a dumb question as you might test for it all the time, but I noted in your example day's readings (and I realise it's only an example), that you said you'd gone to bed fine - then at 4am it was at 16, and then it was difficult to get down after that. Is it possible that you've suffered from the dawn phenomenon, which I'm given to understand produces exactly those effects? Again I realise it was just an example and could have been a coincidence but from reading in forums elsewhere, if that's what's causing you trouble it tends to make problems for you throughout the day due to the effect of everything your body does to counter the hypo during the night and the other hormones it releases to wake you up. I don't get it because of the times I work and sleep so I'm lucky. Do you test between 2-3am to see if you're having hypos?

Jan 8, 2011 emmahope 17 posts	Topic: Carbohydrate Counting / calories affecting insulin required? HI Helen, thanks for that.It's reassuring to hear -when I've put it to hcps they just dismissed it, which gave me a sense that 'whatever I do I cant get it right'.I'm looking forward to doing DAFNE 2nd week of February,a bit trepidatious but I'm sure it will be great to compare notes with others living with other type ones. Best, Emma

Jan 8, 2011 HelenP 218 posts	Topic: Carbohydrate Counting / calories affecting insulin required? Hi Emma, I have done DAFNE and one of the things that has really hit home for me is that we are all different...for example I need to count two chicken drumsticks as 1CP. When I raised this as a theory with the dietician she confirmed that 150g of protein (more than I usually have) may very well need to be "covered" by a small dose of insulin. I also steer away from fat calories as they also have a crucial (and disproportionate) effect on my BGs after meals. I believe it has something to do with fat effecting glucose absorption....or something. Are you booked in to do DAFNE? I found it unbelievably informative and as it gave me more answers I am much more conscious of the whole diabetes situation. Good luck. Helen

Jan 7, 2011 dougie70 2 posts	Topic: General Discussion / HAPPY NEW YEAR happy new year everyone

Jan 7, 2011 marke 686 posts	Topic: DUAG Committee / PCT response letter Annette, good letter ! It will be very interesting to hear the response if they can come up with one ;-)

Jan 7, 2011 emmahope 17 posts	Topic: Carbohydrate Counting / calories affecting insulin required? I havent done DAFNE yet but am following principles as far as I know them.Do others notice that its not just cps that affect insulin requirements but non carbohydrate containing calories too? This is the case for me,borne out of experience. Thanks

Jan 6, 2011 Simon 578 posts	Topic: General Discussion / Great video - worth a watch I'm sure we've heard all of the silly comments in this video at least once in our diabetic lifetimes: What NOT to say to the parent of a Type 1 Diabetic Enjoy!

Jan 5, 2011 MikeH 9 posts	Topic: Carbohydrate Counting / prawn crackers? useing the iphone app "carbs and cals" it gives 20g carbs for 35g of prawn crackers

Jan 5, 2011 Carolin 83 posts	Topic: Carbohydrate Counting / prawn crackers? Using info from supermarket prawn crackers, approx 6 crackers (20g weight) is 1CP Good luck!

Jan 5, 2011 Annette Bell 72 posts	Topic: DUAG Committee / PCT response letter Hi folks! Mark has kindly sorted this so I can send you a copy of the letter I have finally sent to my PCT in response to their letter. Here is the link: PCT response.doc

Jan 4, 2011 emmahope 17 posts	Topic: General Discussion / Am new...And 'RECOVERY' I know many of us with this disease have had periods of struggling to accept this condition. I wonder whether there are others who have dealt with related (for me) issues also: Have others grown up with diabetes which was abused by carers or have needed to go through a recovery,perhaps, with eating disorder like me- or have recovered from using diabetes as self harm? I"m now in recovery but the history has left me with complications.I do at times struggle with acceptance with what this disease has brought and does bring but it has also been a journey of spiritual and emotional/mental growth and lessons.

Jan 4, 2011 Simon 578 posts	Topic: General Discussion / We'll be upgrading soon Upgade complete - topic locked.

Jan 4, 2011 Broady 13 posts	Topic: General Discussion / Brittle Diabetes Hi adamrit I was put on a continuous glucose monitor last year, when I had the results the specialist nurse and myself went through them and altered my basal rates to suit. With a bit of tweaking and a lot of hard work it paid off and my bloods have been very good since the alterations. I hope everything works out for you and let me know how you get on

Jan 4, 2011 adamrit 4 posts	Topic: General Discussion / Brittle Diabetes Dear Broady I've been on the pump (medtronic 512 and now the Veo) for nearly 5 years. It has reduced my bad hypos very considerably but my Hba1Cs are a little bit higher than before the pump and DAFNE (at between 7-. I test my blood about 8 times a day with an Ascensia Breeze II (very quick and handy) and I think that if I didn't test so much, the hypos would be much more severe, so the pump may not be the reason for fewer hypos, just the extra testing. On the other hand, I love the pump for one canula injection every 3-4 days instead of 4 injections a day and now not having to get out an insulin pen all the time. I just don't understand why, following DAFNE carefully and having a pump and using it carefully, my diabetes doesn't follow the rules. My insulin sensitivity alters from hour to hour, sometimes 3 units of QA (via pump) brings my bloodsugar down by 2-3 mm m'l and sometimes 1 unit brings it down 5 mm m'l. This is a huge difference in sensitivity and for no reason I can see. Is there any research into this sort of irregular diabetes? I will be trying continuous glucose monitoring from next week for a while to see if it reveals more accurately the relationship between insulin, food and exercise in me as you can record all three factors on the pump. There may be some pointers to better control. Regards

Jan 3, 2011 Broady 13 posts	Topic: General Discussion / Brittle Diabetes Dear adamrit When I was on injections I to was suffering the same problems as you. No patterns with my blood sugars and having a lot of hypos. Then 3 years ago I was given a medtronic paradigm 522 insulin pump and it has made a vast improvement with my blood sugars. My last Hba1c was 6.8 the best i've ever been. I have had diabetes for 42 years and having the pump was the best decision I have ever made, I would recommend if given the chance of having a pump to take advantage and give it a try. Hope you have the same success as I did, all the best

Jan 3, 2011 adamrit 4 posts	Topic: General Discussion / Brittle Diabetes I was told I had "brittle" diabetes 54 years ago and also again a few months ago. For me it means having no idea or way of anticipating how I will react to insulin or food or exercise in terms of blood glucose levels. I try fairly desperately hard to control my Type 1 diabetes, but to control it my body must have a consistent response to insulin, carbo intake and exercise, which it doesn't. I think that is described as "brittle" diabetes. Some diabetic doctors say 7% of their patients are brittle and some say 10%. I have just been issued with a Medtronic Veo with continuous BG monitoring which I will start to use when I receive training next week. As my BG results are so chaotic, diabetic doctors always look at any pattern that lasts for 2 days and seem to give advice on raising or lowering insulin dosage on the basis of those two days ignoring the highs and lows of all the other days at those times. It must be nearly impossible to avoid giving this advice because it works for people with regular diabetes. You are seriously lost without patterns. To repeat, I weigh most of my food and relate the insulin boluses and basal dosage to the food and the amount of anticipated exercise. If my diabetes was regular, I would be a DAFNE star patient, but it isn't and I'm not. I can't go down the transplant route because I grow most of my veg and fruit and the transplant drugs increase your skin cancer likelihood by 26 times and I cant or wont work the ground in a hat, long sleeves and gloves. I am hoping that the continuous interstitial glucose monitoring (plus frequent blood glucose tests) will find some patterns reliable enough to make intelligent changes and better control, though I am not advised to be confident in this. It is disheartening to have "brittle" diabetes and so little possible control. With the pump and blood glucose testing 8 times a day, I can limit the worst hypos and hypers, but it is always living on the edge. On the other hand, 54 years of it with only one episode of a hypo leading to emergency treatment at hospital, no serious eye or foot problems, no ketone bad results, can't be considered too bad for normal diabetic let alone a brittle one. Regards

Jan 2, 2011 Simon 578 posts	Topic: General Discussion / We'll be upgrading soon Hi all, Just to let you know, we'll be upgrading our servers sometime soon (in the next week) - we'll aim to do this at night (UK time) to avoid inconvenience for the majority of users, however the process may take up to 24 hours. When the upgrade is in progress there will be a notice on the site, and you won't be able to access your diary, the forums or other features. The reason for this is that we need to provide a faster and more robust service for our users - so the downtime is necessary. Apologies for any inconvenience! Simon

Jan 2, 2011 Simon 578 posts	Topic: Site Development / Printing - Meals alligned Hi Anna, thanks for your feedback. In the past we've found that pretty difficult to do - as different people store different numbers of results. I'll see what we can do and get back to you. Simon

Jan 2, 2011 AnnaM 2 posts	Topic: Site Development / Printing - Meals alligned Is there a way of printing the results for a week with all of the breakfasts, lunches, dinners, etc... below each other, so that when the specialist at the hospital reviews the data they can easily see any trends. This was how it was laid out when I did the course and the hospital said it was very important to have it like this. Thanks

Jan 2, 2011 AnnaM 2 posts	Topic: Site Development / Printing - Meals alligned Is there a way of printing the results for a week with all of the breakfasts, lunches, dinners, etc... below each other, so that when the specialist at the hospital reviews the data they can easily see any trends. This was how it was laid out when I did the course and the hospital said it was very important to have it like this. Thanks

Jan 1, 2011 Simon 578 posts	Topic: General Discussion / HAPPY NEW YEAR Thanks saxman, Happy New Year to you and all DAFNE Online users!

Dec 31, 2010 saxman 28 posts	Topic: General Discussion / HAPPY NEW YEAR I WISH ALL READING THIS A VERY PROBLEM FREE NEW YEAR AND WISH YOU ALL YOU WISH YOURSELF,