Recent Posts - DAFNE Online

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,

Dec 29, 2010

marke 681 posts

Topic: General Discussion / Brittle Diabetes

unfortunately I think the only answer to brittle diabetes is an islet transplant. A little while ago we were fortunate enough to have Richard Lane the president of Diabetes UK attend a DAFNE User Action Group meeting and he is/was a 'brittle' diabetic who had an islet transplant. It is not a 'cure' as such as it doesn't last forever, but apparently it made a huge difference to him. Another thing that helps, but at the moment is still expensive, is continuous glucose monitoring. These devices give you a BG reading every 10 mins or so and apparently also help greatly in managing BG as you can keep track of the effects of everything you eat.
All I can say is keep trying to control your diabetes, its not easy. We all have days when our BG's don't make sense, but to be in that situation all the time must be very frustrating. Hopefully there are others on here who can offer more practical advice based on experience.

Dec 29, 2010

MikeH 9 posts

Topic: DAFNE Graduate Group (DGG) / Join Now !!

ok just done my application and sent

Dec 28, 2010

PNThompson 57 posts

Topic: Questions for HCPs / cold and flu medications

From my past experience, and asking my diabetic nurse or consultant, the warnings are aimed at Type 2, as you are correct to counteract any increases in blood sugar during the injections. That was some time ago, so it may be worth asking again. I've found that i've only had any luck with the Day Nurse and Night Nurse tablets/capsules, and they advise not taking them if you are diabetic.

Dec 28, 2010

JayBee 587 posts

Topic: General Discussion / Brittle Diabetes

I'm having a hard time finding a clear definition of what "brittle diabetes" is. It's got too much mix in with general statements about poorly controlled type 1 diabetes. I've been diabetic for 21 years and I've never heard of it.

With this, what advice have your DAFNE team given you since you've had this type of diabetes for so long?

If you take the same thing every day, have you tried the ratio adjustments to prevent post meal hypos? With you now being on a pump, my understanding of your regime is restricted because I inject manually.

Do you still have your DAFNE guidebook to help you? Five years is a long time to be doing DAFNE...

Best of luck with figuring it all out.

Dec 28, 2010

davidstyles82 4 posts

Topic: Questions for HCPs / cold and flu medications

When suffering from colds etc I sometimes use medications from over the counter such sudafed or nurofen.

Can any one tell me why it recommends i consult a doctor if i have diabetes or does this just refer to type 2 or poorly controlled diabetics?

All i have noticed is an increase in blood sugar which i can control with corrective doses or sick day rules?

Dec 28, 2010

Alan 49 284 posts

Topic: Carbohydrate Counting / Carb Free Breakfast

Yes, I was a bit doubtful about "proteins counteracting carbs". Surely, if a meal contains carbohydrates, you have to count them to calculate your QA dosage, regardless of what you're having with them.

Dec 28, 2010

Broady 13 posts

Topic: Carbohydrate Counting / Advocaat

The nutrition book I use is Dr. Wynnie Chan food and diet counter

Dec 27, 2010

PNThompson 57 posts

Topic: Carbohydrate Counting / Carb Free Breakfast

Careful guys, as sausages do have carbohydrates. Despite Eggs and Bacon not having Carbohydrates, I would be carefule and consider that there may a few carbs in that.

Dec 27, 2010

Sue Brewer 2 posts

Topic: Carbohydrate Counting / Advocaat

Many thanks. I'd be grateful if you could tell me what nutrition book you are using? Thanks again.
Sue

Dec 27, 2010

Broady 13 posts

Topic: Carbohydrate Counting / Advocaat

In my nutrition book 25ml of Advocaat is equal to 7g of carbohydrates

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,

Dec 29, 2010 marke 681 posts	Topic: General Discussion / Brittle Diabetes unfortunately I think the only answer to brittle diabetes is an islet transplant. A little while ago we were fortunate enough to have Richard Lane the president of Diabetes UK attend a DAFNE User Action Group meeting and he is/was a 'brittle' diabetic who had an islet transplant. It is not a 'cure' as such as it doesn't last forever, but apparently it made a huge difference to him. Another thing that helps, but at the moment is still expensive, is continuous glucose monitoring. These devices give you a BG reading every 10 mins or so and apparently also help greatly in managing BG as you can keep track of the effects of everything you eat. All I can say is keep trying to control your diabetes, its not easy. We all have days when our BG's don't make sense, but to be in that situation all the time must be very frustrating. Hopefully there are others on here who can offer more practical advice based on experience.

Dec 29, 2010 MikeH 9 posts	Topic: DAFNE Graduate Group (DGG) / Join Now !! ok just done my application and sent

Dec 28, 2010 PNThompson 57 posts	Topic: Questions for HCPs / cold and flu medications From my past experience, and asking my diabetic nurse or consultant, the warnings are aimed at Type 2, as you are correct to counteract any increases in blood sugar during the injections. That was some time ago, so it may be worth asking again. I've found that i've only had any luck with the Day Nurse and Night Nurse tablets/capsules, and they advise not taking them if you are diabetic.

Dec 28, 2010 JayBee 587 posts	Topic: General Discussion / Brittle Diabetes I'm having a hard time finding a clear definition of what "brittle diabetes" is. It's got too much mix in with general statements about poorly controlled type 1 diabetes. I've been diabetic for 21 years and I've never heard of it. With this, what advice have your DAFNE team given you since you've had this type of diabetes for so long? If you take the same thing every day, have you tried the ratio adjustments to prevent post meal hypos? With you now being on a pump, my understanding of your regime is restricted because I inject manually. Do you still have your DAFNE guidebook to help you? Five years is a long time to be doing DAFNE... Best of luck with figuring it all out.

Dec 28, 2010 davidstyles82 4 posts	Topic: Questions for HCPs / cold and flu medications When suffering from colds etc I sometimes use medications from over the counter such sudafed or nurofen. Can any one tell me why it recommends i consult a doctor if i have diabetes or does this just refer to type 2 or poorly controlled diabetics? All i have noticed is an increase in blood sugar which i can control with corrective doses or sick day rules?

Dec 28, 2010 Alan 49 284 posts	Topic: Carbohydrate Counting / Carb Free Breakfast Yes, I was a bit doubtful about "proteins counteracting carbs". Surely, if a meal contains carbohydrates, you have to count them to calculate your QA dosage, regardless of what you're having with them.

Dec 28, 2010 Broady 13 posts	Topic: Carbohydrate Counting / Advocaat The nutrition book I use is Dr. Wynnie Chan food and diet counter

Dec 27, 2010 PNThompson 57 posts	Topic: Carbohydrate Counting / Carb Free Breakfast Careful guys, as sausages do have carbohydrates. Despite Eggs and Bacon not having Carbohydrates, I would be carefule and consider that there may a few carbs in that.

Dec 27, 2010 Sue Brewer 2 posts	Topic: Carbohydrate Counting / Advocaat Many thanks. I'd be grateful if you could tell me what nutrition book you are using? Thanks again. Sue

Dec 27, 2010 Broady 13 posts	Topic: Carbohydrate Counting / Advocaat In my nutrition book 25ml of Advocaat is equal to 7g of carbohydrates