Recent Posts - DAFNE Online

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 574 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 574 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 574 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 646 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 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 582 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 49 280 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

Dec 27, 2010

Sue Brewer 2 posts

Topic: Carbohydrate Counting / Advocaat

Does anyone know how many CP are in a serving of Advocaat please?

Dec 27, 2010

adamrit 4 posts

Topic: General Discussion / Brittle Diabetes

Has anyone found a way of coping with brittle diabetes. I've had it for 54 years. I used to have lots of bad hypos, so I did the DAFNE course and then, a nearly five years ago, I got a Medtronic 512 pump and last week the new Medtronic Veo replacement through Dr Darko at Central Middlesex. The pump reduced my hypos very considerably, but even though I calculate my food and relate my bolus (quick acting) and basal (background) rates to food and exercise, I have no way of anticipating what my blood glucose is. Eating exactly the same every morning, the same bolus and exercise and given the same pre-breakfast BG, the BG at 11.00 can be 2.5 or 16mm/l. I have to test my blood 8 times a day to avoid extreme hypos and hypers. The results defy the rules of DAFNE, so, though I follow them carefully, I still have no way to anticipate my BG readings.
Last night, after a very light meal (two toasts and salad) at 8.00pm, I was 9.0mmol/l at 11.30pm which is usually OK for me through the night, but at 4.00am I was over 16mmol/l. I took 4.5U of bolus which only brought my BG down to 11.5mmol/l at 8.00am. I had no breakfast but had another bolus of 2.4 which brought the BG down to 7.0mmol/l by lunchtime. I changed the insulin two days ago and was fine on the first day. I'm not ill, I have no sign of infection. Other days can be the opposite. Nothing is ever regular.
I am in pretty good health, at just over 6ft and 176lbs, about 10lb heavier than 20 years ago. My eyes and feet are OK. I'm fairly active. There is no regular pattern to my BG readings. My HbA1c are always between 7 and 8.4 which isn't good but not too bad.
What distresses me is that I try really hard to control my diabetes, but I can't find any way to regulate the metabolism of my diabetes. I never cheat and have a secret biscuit on the side and forget to put in in, there's no point. Anyone else with the same sort of problem?

Dec 27, 2010

Broady 13 posts

Topic: Carbohydrate Counting / prawn crackers?

I have a nutrition book with values for many foods, in the book it says for every 70g of prawn crackers it is 37g of carbohydrates. I hope this helps

Dec 26, 2010

keyolekate 1 post

Topic: Carbohydrate Counting / prawn crackers?

I always get stuck with calculating the CP's for prawn crakers. Has anybody worked this out?
Thanks

Dec 24, 2010

Stew B 123 posts

Topic: General Discussion / A very Merry Christmas to you all

Here here! Thanks to Simon and Marke for everything they've done to provide such an excellent resource!

I'll be echoing Simon in overindulging - I've just ticked my Xmas family-brunch order, it says "everything except the black pudding", pre-DAFNE I couldn't imagine being able to put in an order like that.

Compliments of the season to everyone!

Stew

Dec 24, 2010

Alan 49 280 posts

Topic: General Discussion / A very Merry Christmas to you all

Thanks Simon, Mark and everybody at DAFNE Online for all the hard work you do to give us a really helpful resource that I'm sure we all find very useful. Best wishes to all of you.

Dec 24, 2010

Simon 574 posts

Topic: General Discussion / A very Merry Christmas to you all

Further to Mark's news post, I'd just like to wish you all a very Merry Christmas and hope you all enjoy the festive season to the fullest - not wanting to encourage bad behaviour but I for one shall be eating and drinking too much, and hope you all do too Smile

To echo Mark's comments, we have doubled in size from 2126 to over 4700 users in the past year which is testament to the hard work by the DAFNE Educators and Central Management team so a big thank you to those guys for supporting us.

But, first and foremost - thanks to you, the users - without your participation in the forums, requests for new features and problem finding, DAFNE Online wouldn't be a success - so thank you to you all so much!

All the best for Christmas and the New Year

Simon

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 574 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 574 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 574 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 646 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 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 582 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 49 280 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

Dec 27, 2010 Sue Brewer 2 posts	Topic: Carbohydrate Counting / Advocaat Does anyone know how many CP are in a serving of Advocaat please?

Dec 27, 2010 adamrit 4 posts	Topic: General Discussion / Brittle Diabetes Has anyone found a way of coping with brittle diabetes. I've had it for 54 years. I used to have lots of bad hypos, so I did the DAFNE course and then, a nearly five years ago, I got a Medtronic 512 pump and last week the new Medtronic Veo replacement through Dr Darko at Central Middlesex. The pump reduced my hypos very considerably, but even though I calculate my food and relate my bolus (quick acting) and basal (background) rates to food and exercise, I have no way of anticipating what my blood glucose is. Eating exactly the same every morning, the same bolus and exercise and given the same pre-breakfast BG, the BG at 11.00 can be 2.5 or 16mm/l. I have to test my blood 8 times a day to avoid extreme hypos and hypers. The results defy the rules of DAFNE, so, though I follow them carefully, I still have no way to anticipate my BG readings. Last night, after a very light meal (two toasts and salad) at 8.00pm, I was 9.0mmol/l at 11.30pm which is usually OK for me through the night, but at 4.00am I was over 16mmol/l. I took 4.5U of bolus which only brought my BG down to 11.5mmol/l at 8.00am. I had no breakfast but had another bolus of 2.4 which brought the BG down to 7.0mmol/l by lunchtime. I changed the insulin two days ago and was fine on the first day. I'm not ill, I have no sign of infection. Other days can be the opposite. Nothing is ever regular. I am in pretty good health, at just over 6ft and 176lbs, about 10lb heavier than 20 years ago. My eyes and feet are OK. I'm fairly active. There is no regular pattern to my BG readings. My HbA1c are always between 7 and 8.4 which isn't good but not too bad. What distresses me is that I try really hard to control my diabetes, but I can't find any way to regulate the metabolism of my diabetes. I never cheat and have a secret biscuit on the side and forget to put in in, there's no point. Anyone else with the same sort of problem?

Dec 27, 2010 Broady 13 posts	Topic: Carbohydrate Counting / prawn crackers? I have a nutrition book with values for many foods, in the book it says for every 70g of prawn crackers it is 37g of carbohydrates. I hope this helps

Dec 26, 2010 keyolekate 1 post	Topic: Carbohydrate Counting / prawn crackers? I always get stuck with calculating the CP's for prawn crakers. Has anybody worked this out? Thanks

Dec 24, 2010 Stew B 123 posts	Topic: General Discussion / A very Merry Christmas to you all Here here! Thanks to Simon and Marke for everything they've done to provide such an excellent resource! I'll be echoing Simon in overindulging - I've just ticked my Xmas family-brunch order, it says "everything except the black pudding", pre-DAFNE I couldn't imagine being able to put in an order like that. Compliments of the season to everyone! Stew

Dec 24, 2010 Alan 49 280 posts	Topic: General Discussion / A very Merry Christmas to you all Thanks Simon, Mark and everybody at DAFNE Online for all the hard work you do to give us a really helpful resource that I'm sure we all find very useful. Best wishes to all of you.

Dec 24, 2010 Simon 574 posts	Topic: General Discussion / A very Merry Christmas to you all Further to Mark's news post, I'd just like to wish you all a very Merry Christmas and hope you all enjoy the festive season to the fullest - not wanting to encourage bad behaviour but I for one shall be eating and drinking too much, and hope you all do too To echo Mark's comments, we have doubled in size from 2126 to over 4700 users in the past year which is testament to the hard work by the DAFNE Educators and Central Management team so a big thank you to those guys for supporting us. But, first and foremost - thanks to you, the users - without your participation in the forums, requests for new features and problem finding, DAFNE Online wouldn't be a success - so thank you to you all so much! All the best for Christmas and the New Year Simon