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Jan 25, 2012 Derek Brown 32 posts	Topic: General Discussion / Need a second opinion Apologies for taking so much space but I thought it a better way to show the diary than sharing with various people to look at. To cut a long storyshort for various personal happenings I gave up on my diabetes from counting and recording to going days without insulin. I now realise that I need to get back on track and since 2nd January I've tried my hardest to monitor and stick to DAFNE rules. It started of not too bad, I;m especially chuffed about my readings on 11th Has anybody ever recorded a whole green day, i.e in target? After there it went a little wonky though and the last couple of nights my nighttime seems to have risen by morning time making me think the levemir needs upped. I'm including the fact last night's 4.9 should'nt have risen to 9.6 this morning even with the 1CP. I'm not certain if I should up the Levemir tonight by 1u and keep checking the next few days, or do a couple 3 am to rule out it dipping during the night. Also normaly a 3:1 ratio at breakfast would see me good to lunchtime but it's dipped a bit last couple of days by then so I'm thinking og going to 2.5:1 ratio. But which to do first check my basal, or drop my breakfast ratio? I know it should be one change at a time a sensible is to check the basal but someone else might have done both and have advice on it. Thanks, Derek

Jan 25, 2012 Derek Brown 32 posts	Topic: General Discussion / Need a second opinion Part 2

Jan 25, 2012 Derek Brown 32 posts	Topic: General Discussion / Need a second opinion Bare with me as I post as much of my recent diary as I can (been a while since I last did it)

Jan 25, 2012 novorapidboi26 1,816 posts	Topic: General Discussion / Redoing DAFNE??? Lizzie said: Well these are my results so far. WOW, your results are quite good, better than you expected I would imagine............... For any roll I take them as 3 CPs, unless they are smaller than a normal sized one............have a look at the carb book on the site, there is also the book carbs and cals that you can get from amazon, this is really helpful also, I have this for mainly calories but comes in useful for carbs too......... A comment I would make is that you are not giving your insulin 5 hours to work, so leaving 5 hours between MAIN meals.............for example, between 13:40 and 16:41 is only 3 hours, so that 11.5 you corrected for would of still needed an extra hour, hour and a half to come down with the 16 units you injected at 13:40..................if you can do this you will know for sure whether your dose is right, and it looks pretty much there to me......... Your overnight numbers look to be good also, as you woke up the same as you went to bed with, this would suggest your BI dose of 28 is correct, however, do another couple of nights to confirm it............. I suspect your low may be down to too much insulin at breakfast or a miscalculation of the carbs, but you can only really go down that path once you know the BI is right............ What did you have for breakfast this morning................... Well done in doing the tests, you should be proud. I hope that seeing your results, which are really good by the way, has made you feel more confident that your BG control is good............the odd high number in amongst numbers like that will not do any harm whatsoever.......... Again, well done.................

Jan 25, 2012 Lizzie 87 posts	Topic: General Discussion / Redoing DAFNE??? Well these are my results so far.

Jan 25, 2012 Stew B 123 posts	Topic: Site Development / ONLINE DIARY LINK I visit the site 2 -3 times a week on my pc (I update my on-line diary using my iPod touch and the excellent DAFNE app.). Usually when I click on the forums link I get a nice green square next to any of the forums which have been active since my last visit, so I know I've only got to look at those. This function hasn't worked on my last few visits - is it me, and is there anything I can do to restore this?

Jan 25, 2012 Stew B 123 posts	Topic: General Discussion / Accu Chek Aviva Expert A few patients at our clinic (including me) were given Accu Check Aviva Experts as part of the early trials. Unfortunately, the one I was given was giving me readings which were consistently at least 1 above the readings I was getting from my one-touch ultra meter. As a consequence when I was getting early signs of a hypo, the meter was telling me I was in target (which was what alerted me to the problem). I ran the two meters together for a few days and then stopped using the expert (I am still using the multi-clix "pricker" though!). I've had a similar (though not so significant) problem with a one-touch ultra easy, so I'm not suggesting that this is a problem unique to the Expert, and was probably just the individual meter I was allocated. I know that the small-print says that meters are not precise, and can vary up to 10%, but in DAFNE terms 10% can make a real difference to decisions about doses and corrections.

Jan 24, 2012 Carolin 83 posts	Topic: General Discussion / Accu Chek Aviva Expert Naz said: Hey everyone. We were very kindly given new Accu Chek Aviva Experts at our 3 month DAFNE review, which I was really pleased about. I'm still getting used to it, but so far, so good. Does anyone have any experience with this bolus advice meter? Also, I just want to say that I'm so happy I did DAFNE - I've always struggled with my blood sugars and as a result my Hba1C was always high. I'm happy to report that in the matter of a few months I have brought my Hba1C down from 9.9% to 8.6%. Yay! lol. Hi Naz, Well done on the HbA1c improvement! Great to see your hard work paying off isn't it These new bolus adviser meters have been introduced on the back of pump therapy really, where they've been incorporated in some way in pumps to enable users to more accurately calculate the bolus required and take away some of the complicated maths you need to do. We've tried them out in Sheffield, indeed a few of our DAFNE graduates took part in the early 'trials' (which weren't really scientifically done and pts were self-selected). I think they were a bit of a novelty and most stopped using them as they could do the maths quicker in their own heads following DAFNE training, so it became a bit of a pain to put all the data in each time you test or eat CPs. Having said that, I have had a few people who have found them useful, especially those who have had problems with hypos, often after correcting high BG, this is because the calculator factors in the 'active insulin', I.e, the previous dose of QA that may still be having an effect on the BG when you test it. So in that way it can stop you from overcorrecting your BG and prevents hypos. The impending REPOSE study (see DAFNE main website) will test out bolus advisers in both pts using multiple dose insulin and those using insulin pumps, so we should start to gather much more useful data on them over the next couple of years. Good luck! Carolin

Jan 24, 2012 Carolin 83 posts	Topic: General Discussion / Dafne & sports nutrition. How does it work? JennyNZ said: thanks for that but how would you accomodate eating about 6 cp's per hour while training? Hi Jenny. You're quite right that you will need the additional carbs during the training / event, as well as reductions in your insulin doses. The standard DAFNE curriculum and workbook doesn't go into this in great detail as it's meant to give people just the basics, but the runsweet website, or the Diabetic Athelete Handbook (available through Amazon) are fantastic in giving guidelines for the extra carbs required. 60g per hour does sound about right, so try to think of forms that you can easily keep in your swimming gear, e.g. Glucose gels. Good luck! Carolin

Jan 24, 2012 Lizzie 87 posts	Topic: General Discussion / Redoing DAFNE??? Hi Simon Thanks for mending the Handbook. I have entered a couple of tests in the Diary section already, did not realise how good it was. Thanks both for your help. Will try my best tonight and see how it goes.

Jan 24, 2012 Simon 574 posts	Topic: General Discussion / Redoing DAFNE??? Lizzie said: I did try to access the handbook however I only got an error message. Apologies, Mark and I have been upgrading the site and some errors slipped through the net, the handbook is working again now I think novorapidboi is giving some real sound advice to you here. Don't underestimate the power of writing your readings down - if you can see them on paper (or on the diary here) then you will be able to notice trends and see where adjustments in dosage might need to be made. If you use the diary on here, even if you aren't able to spot the trends in the diary, you can share with other people and ask for advice - there are so many people helping each other out here. One comment: Lizzie said: I only really check my blood sugar when I feel high or low. I have stopped checking on a regular basis and stopped writing it down. I just feel low about it as every reading seems high or low and I don't know why. I'd say try and test more often, not only will it contribute to keeping a record of your sugars so that you can make adjustments; you may be pleasantly surprised and find that some readings are in range - which could show you that getting on-target readings is possible, and motivate you to keep track of and adjust your insulin doses.

Jan 24, 2012 Lizzie 87 posts	Topic: General Discussion / Redoing DAFNE??? Thanks, I think the best thing is to set an alarm. I panic because I am so terrified of complications. I have been told many people panic when they get hypo but I have never worried about that. I am lucky to have good warning signs so all it is is a quick check to make sure I am indeed hypo, then 20g carbs and that's it. I panic because I hate the idea that all the highs are having an effect which I will feel in years to come, like a sword suspended over my head. I worry that although there is no immediate effect, my body is storing it all up to suddenly dump on me in the future. That small unnoticeable changes are happening to tiny cells in my eyes, kidneys and nerve endings, and these will become apparent at some future date when my body decides it is going to let me down again. This probably all sounds crazy to you. I know I worry too much. I know my weight has nothing to do with my blood sugars, but try telling them that. Everything seems to be about weight. I don't understand why they wanted me to take Metformin as I was losing weight and doing well anyway. The last time I checked I was on 3:1 but that was before the Metformin. At lunch I tried 2:1.

Jan 24, 2012 novorapidboi26 1,816 posts	Topic: General Discussion / Redoing DAFNE??? The reason for the 5 hours is because by then all QA insulin from dinner and Carbs from your dinner will be gone, leaving nothing but your Lantus in your system, this means you can accurately see how its doing overnight.............. If you still had insulin and carbs working then your pre bed test would be different from the morning......................the 5 hours is the maximum the QA insulin works is all, I am Novorapid, but it doesn't last that long in me, so it could be the same for you, however when testing you want to eliminate all the variables....... You could set an alarm for 12:00 or after that, do a test, then back to bed.............. You could skip dinner or have a carb free dinner [meat, cheese, eggs, most vegetables], then you would not be taking QA insulin......... Whatever level you feel is uncomfortable would be the level to correct, but for test purposes you really need to be free of QA insulin. The low teens would be perfectly safe just for testing your background, but as I say, if you feel rough, just correct and try again another night.......why do you think you panic when your high, do you feel high? If you dont know you ratios its likely your on a 1:1 ratio, which equates to 1 unit of insulin for 10grams [1CP] of carbohydrates.................and this wont effect the test, as your not concerned with that insulin for now.....................how much insulin do you take before eating, just random guesses? You dont what insulin could be causing the problem, that's why you need to test your background, to make sure its correct..........then you know if there are any issues it will be your QA [Humalog].......... Dont feel stupid, I was in the dark also, at least until DAFNE...............................your course must not have been conducted very well............. All you are looking for from the nurses is advice on adjusting doses, your weight has nothing to do with your blood sugar control, I have sacrificed my weight for good blood sugar control, well, I eat too much, but my blood sugar has more of a priority.......... You can only ask, you need to, you have a right to the same care as everyone else................ You can get support on here, and over at www.diabetessupport.co.uk......................... I will help as much as I can.................

Jan 24, 2012 Lizzie 87 posts	Topic: General Discussion / Redoing DAFNE??? Thanks for all the help. If I don't eat for 5 hrs before bed (11pm) I will need to have tea around 5pm, so that's not doable. Does it need to be 5 hours? What is the minimum length of time it could be? I usually go to bed around 11 and get in from work about 6pm, so I would need to get going immediately on tea and eat something that doesn't take long to make to have it early enough. Or should I skip tea altogether or would that affect the results? And how high would I need to be before bed to make it worrying enough for correction? I panic when I am high and often overcorrect. I would worry if I am high before bed. Would the fact that I don't know my QA ratios affect the results of the Lantus tests, if that makes any sense? I mean, if I am high/low, how do I know whether it is a result of the Lantus being wrong or a result of the QA ratio being wrong? I am sorry for being overcautious about all this. But like I said I am really afraid of doing something wrong and it makes me feel really stupid to not know any of this after nearly 20 years. Even thinking about it now makes me worried and frustrated and I feel like crying but I know I have to try. Tbh, I don't know if the nurses or doctors can help me. They are nice people but they are judgmental about my weight and cannot see past that to helping me sort out my diabetes.

Jan 24, 2012 novorapidboi26 1,816 posts	Topic: General Discussion / Redoing DAFNE??? OK.................... So you need to start from the beginning, which is to test your Lantus dose..................so dont have any food or QA 5 hours before you go to bed, do a test before bed, record the result...........even if its high [use discretion] dont correct it..............test before breakfast, record the result............ If you are within 1-2mmol/l then the Lantus is doing its job. However, you should do about 3 consecutive days to make sure the results your seeing, whether there right, too much or too little, are consistent..............once your sure bump up your dose if your readings went up over night, and bump down if your reading went down, or do nothing if your blood sugar held steady.........when changing background doses its wise to do a 3am test to make sure your not going low overnight, which could result in a high and therefore possibly give the impression you need more when in fact you dont.......... Once this is right, you can move on to your QA ratios.............. REMEMBER that the effects of changing Lantus, as opposed to Levemir, take a day or 2 to show up, so you should be patient at first......... Explaining the next stages might just complicate things for you, so if you concentrate on you Lantus dose for now that would be good............ Try and contact the DAFNE trained nurses at your clinic and make an appointment, this should be possible as its not an official clinic appointment, they will be better equipped to get you back on track as they will be face to face........ Would you like me to email my excel spreadsheet to you..........?

Jan 24, 2012 Lizzie 87 posts	Topic: General Discussion / Redoing DAFNE??? No I am not in contact with the nurses. I don't know why. Like I said doctors seem to lose interest in me. I am on Humalog and Lantus. The Lantus at the moment is 30u before bed but I am not sure if that is right. I kept increasing it until my blood sugars through the night were reasonable as I kept waking up high but during the day as I mentioned it gets confusing. Thanks for helping.

Jan 24, 2012 novorapidboi26 1,816 posts	Topic: General Discussion / Redoing DAFNE??? I think what you need is motivation, as opposed to the education, even though you may have forgot most of it. The best source of motivation is from yourself and your team. Are you not in contact with the nurses that done your DAFNE course? They can help you but not if your not testing on a regular basis. Its the regular testing and spotting of patterns which lets you change your doses confidently........ Start testing today, if you dont have a diary, just record it on paper, so blood sugar, carbs, quick acting insulin. I have a spreadsheet I could email you that I use for writing information on............ As soon as you get some results down on paper you can email me them back and I could make some comments, once the ball is moving it gets easier.............. What insulin are you on? How much background do you take and when?

Jan 24, 2012 Lizzie 87 posts	Topic: General Discussion / Redoing DAFNE??? Thankyou for being so kind. The truth is, I will admit to you, I only really check my blood sugar when I feel high or low. I have stopped checking on a regular basis and stopped writing it down. I just feel low about it as every reading seems high or low and I don't know why. I seem to be always doing correction doses but I don't know where to start in working out what doses are right or wrong. I am Ok with carbs when eating prepackaged foods which have carbs per portion on them but am not so good with anything that does not have a carb value written on it or only has it per 100g rather than per portion. The problem was that on the course I could not afford to buy expensive food in the canteen every day so missed out on all the weighing and measuring parts of the course. It may not be that different doing DAFNE again. However I am resolved not to listen to my GP if they try and make me do anything I am not happy with. Also, I cannot overemphasise how world shattering DAFNE was for me. For some reason I seem to slip through the net and seem to have some sort of invisibility cape on so doctors cannot see me. I was never told how to count carbs or measure my insulin in 15 years. For several years I did not see any doctors at all and nobody said anything. I was at the point where I was terrified of my diabetes, thinking about it made me cry I was so terrified of complications and did not know how to make my blood sugars right. So when I got onto a DAFNE course I had to take in all the things that I missed in 15 years and it was a lot to absorb. On the day when I was trying to figure out my insulin dosage I ended up in hysterical tears as I was confronted by this massive fear I had been avoiding for so long. It was an intense emotional week. I was happy afterwards as my doctors were happy with me for the first time ever. But then I was forced into taking medication I did not want or need and that messed up my blood sugars and then I was comfort eating and since I had donned my invisibility cloak nobody noticed and here I am again, in a mess of problems and not knowing where to turn for help. I am pretty sure I am depressed and I am fighting to make myself do anything to be honest, I just don't care and want to ignore everything. I know I will feel better if my blood sugars are less erratic. But without help I can't make them right. The only time any nurse or doctor has taken an interest was when I was on DAFNE. What I really need is ongoing support from a nurse plus counselling but that is not likely. So I am stuck in this cycle of falling over and picking myself up again like a silent slapstick movie on a loop.

Jan 24, 2012 novorapidboi26 1,816 posts	Topic: General Discussion / Redoing DAFNE??? I would contact Marke or Simon who will help you access the handbook, it will help you.................. To be successful in dose adjustment you need to get blood sugar readings consistently before meals, if this isn't happening then this needs to be addressed before anything else........... how bad is it when you say you often dont have time to check your blood sugars.....? Have you got a dairy/homemade sheet to write down your results? You dont need to look at numbers at work, or at least make any decisions on long term dose..........you can give a correction dose and a dose for your food, if the ratio is wrong, then you can analyze that later at home...... I would also say getting the carb count is important, as this would hinder your dose decisions if the count was wrong.......... What part of counting are you struggling with? I would try and get on another course if you can, however what will make it different this time round..........? In the mean time me and others on here will be happy to help you in any way we can......

Jan 24, 2012 Lizzie 87 posts	Topic: General Discussion / Redoing DAFNE??? There were some refreshers shortly after I did the course however they were in the day so I had some problems getting leave from work, by the time I had arranged this there was no space left. I wish they would do something in the evening or at the weekend. After about a year these stopped and I now get zero support - eye checks once a year and a consultant appointment with someone who I don't know from Adam once a year and that's the lot. What I need is to work through the process of finding out the ratios again with an educator. It worked on the course as it was isolated from 'real life' - the whole week was spent on the course so that was a big chunk of time I could devote to diabetes and only diabetes and there was nothing else to interfere. When I try it alone it does not work as real life interferes and I cannot work out which of the many confusing factors has caused a high or a low, and if I am at work I don't have time to look at numbers and plot graphs of what my blood sugar was through the day. I often don't even have time to check my blood sugar, I feel like I am always running to catch up. I also need help with sick day rules and carb counting so pretty much the whole lot. That is another reason why a refresher would not work - you have to choose only one or two things to work on. Also I need a similar level of supervision as I did on the course and the educators are far too busy to give that sort of help outside specifically arranged events like the DAFNE course. I did try to access the handbook however I only got an error message. I just don't know what to do. When I did DAFNE things seemed to work for the first time in 15 years. I was eating sensibly and had some understanding of my diabetes and started to lose weight. However after that I was forced into a bad decision by my GP and had family illness and everything fell apart. I just want to get back to how things were and DAFNE is the only thing that ever worked for me. I don't know what else to do since my doctors are not interested except to bully me into weight loss surgery or taking unecessary medications, and I am not able to get the counselling I desperately need.