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15,847 posts found
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Jun 19, 2019
Seanyseanuk
10 posts
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Topic: General Discussion / Dismal Hba1c levels Okay so what are your qualifications exactly? I have no doubt you may know more than some of the HCPs out there, but what basis or reference points are you using to say that with confidence?I’m pretty sure my understanding of the principles of DAFNE – having lived with diabetes for over 35 years and really only having had issues since switching to basal bolus is really in and of itself a clear indicator that DAFNE doesn’t work for everyone. I did my course in October last year, so its been a good 8 months (if we include the month of June). However it is possible as you say, the one that’s incorrect and maybe that is in and of itself the cause factor. As I indicated previously, my levels weren't normal during the 5 days of the course and I was actually given the insulin levels to inject and my sugars did not correspond at all during the 5 days which is also a clear indicator to me that something should have shifted and changed in those 5 days. Having gone from having normal and good HB levels to incredibly poor levels - I am really sure that the only factors that are at play that are significant are the insulins I have been prescribed and changed to. |
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Jun 19, 2019
novorapidboi26
1,819 posts
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Topic: General Discussion / Dismal Hba1c levels I can say with confidence, in terms of DAFNE and diabetes management that I am as qualified, if not more competent than some of the HCPs out there......If you are struggling with DAFNE, its almost certainly you're lack of understanding of the basic principles and/or because you haven't being following them long enough..... it can take months to get the basal dosed up correctly.......this is probably the most important dose.... how long have you been doing it... |
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Jun 19, 2019
Seanyseanuk
10 posts
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Topic: General Discussion / Dismal Hba1c levels I'm sorry but I'm really not comfortable with sharing that data, and besides at the end of the day I would prefer a medical qualified professional offers me advice. So thanks for the offer but I'm going to pass.DAFNE clearly doesn't work for everyone, it very much didn't for me, and whilst I recognize some love it and support it, the evidence in my case speaks for itself. |
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Jun 18, 2019
torana
53 posts
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Topic: Site Development / Spammers This is the letter sent to DAFNE central below. We all need to put in an effort to save our site.“Your forum site is being destroyed by spam. Today there was a drug spam for heroin and MMDA on your diabetic site. It’s highly disappointing. I have already written to you regarding this problem and did not receive a reply on this urgent matter. The forum requires more funding and resources and clearly this issue needs to be taken to the management and board ASAP. I expect a response.” |
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Jun 18, 2019
torana
53 posts
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Topic: General Discussion / Dismal Hba1c levels It’s still difficult to make any comments on your blood sugars unless we can view some results. Why not take some readings over a week and put them on the forum for others to analyse. Although there are a huge amount of variables to change results such as exercise, sickness, emotions, injection site, high or low GI food, the amounts of fats and proteins in the food, insulin resistance etc etc and most of us from time to time just cannot ascertain the reasons for the lows or highs, it would be valuable for members to view details of your whole regime. One of DAFNE’S great strengths is giving users tools to have an understanding of how these new insulins operate in the body and the way to make adjustments related to dosage. I’m sure we can offer you some valuable advice.FREE OUR SITE FROM SPAM FREE OUR SITE FROM SPAM FREE OUR SITE FROM SPAM |
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Jun 18, 2019
novorapidboi26
1,819 posts
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Topic: Carbohydrate Counting / Own meals Going by your BG levels after lunch the ratio is perfect.....so there is no issues there at all....Jist need to see how the evening meal ratio performs.... Unfortunately the dawn rise, the dawn phenomenon as it's also known can't be stopped. A split basal can help a bit but toujeo isn't the best for that. Levemir is best suited to that. You should ask about it. |
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Jun 18, 2019
jh0
16 posts
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Topic: General Discussion / Dismal Hba1c levels Who says you can't vary your dosages now? You can and you can vary it much more than when on NovoMix.Bear in mind what I said about scrutinising every part of your lifestyle. The insulin plays only a small, but vital, role in the grand scheme of things. It is possible to have a string of good luck from carrying on a wrong way of doing things consistently. Similarly you need to be consistent in a positive way. |
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Jun 18, 2019
Seanyseanuk
10 posts
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Topic: General Discussion / Dismal Hba1c levels “However by separating the insulin into bolus and basal types, it's possible in principle to achieve greater control.”I can understand the reasoning, but for me the evidence is far from factual on this. I had better control on the mixed insulin than I do on the basal bolus regime, and I used to vary my dosage. I was on an insulin called NovoMix which as you say was a mix of mixtard and others. For me, I understand what you are saying but the actual issue for me is quite clear in that I had good control for a number of years without issue and the only thing that has changed is the insulin, so even by way of the process of elimination, it’s the insulin that is the causing factor here and the DAFNE principles have not helped me at all. The recent HBA1c test being nearly double shows me that clearly something is very off despite the fact that my waking glucose levels are at first glance normal. The waking glucose is definitely something odd that I have raised many times with the practitioners and I’m sorry to say I think I will be ten foot under before any of my doctors even consider it to be a factor. I am taking as much control of my condition as possible, which is why I have come here. I think something has got to change and am more in mind to argue with my Gp about changing my diabetes care centre in the hope that they will be better. However even that is no guarantee. |
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Jun 18, 2019
jh0
16 posts
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Topic: General Discussion / Dismal Hba1c levels
There used to be an insulin called Mixtard which as the name suggests contained a mix of both long and short acting insulin. However by separating the insulin into bolus and basal types, it's possible in principle to achieve greater control. The caveat is that due to the potential for greater control you also need to test blood sugars more often. Compared to a combo like Novorapid/Levemir say, an insulin like Mixtard models "less closely" the body's natural response to insulin production. It's no surprise that Mixtard has now been pulled. In fact it was pulled almost 10 years ago. There are many factors further afield than purely Diabetes alone which have a significant bearing on achieving and maintaining control of the condition. Achieving Diabetes control is doable and it isn't a myth. The principles of DAFNE are sound but some of the principles are too rigid and/or poorly understood and consequently poorly enforced by practitioners and patients alike. Good control also means that the system you employ, is resilient enough to absorb reasonable, momentary changes in control without entirely toppling over. You need to have a healthy lifestyle. I don't just mean eating habits. You need to scrutinise every detail of your lifestyle and look at everything in your control from the ground up. The fact that you're finding it difficult to achieve adequate control means there are definitely issues which need looking at. Start by getting HBA1c blood tests done consistently every 3 months. This will help highlight potential patterns from your lifestyle. Reflect on the results. Medical staff can only help you so much and even then I've found most of them to be lacking. Take control of your condition. It's not rocket science. |
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Jun 18, 2019
Seanyseanuk
10 posts
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Topic: General Discussion / Dismal Hba1c levels The mixed insulin HB ranged from 45-50 on the mixed insulin which I did inject twice a day. It wasn't a set amount I injected and I varied it a lot depending on if I ate a lot or exercised a lot. It seems to be the early mornings proving to be most difficult as sugars are always high. This morning they were 18 (but they have been substantially higher). My diet and eating times are all relatively consistent and haven't changed much. On the rare occasion I do eat out (which is once in a blue moon) I try to gauge the carb portions and d an injection based on that, but it seems to always be wrong. It can take 3-4 hours for the insulin to have any effect and even then its minimal and drops by a few points.The mixed insulin I was on was discontinued, which is not the hopsitals fault but down to the manufacturer pulling the plug, and the whole reason for switching onto this basal bolus thing was the idea that this would give me even better control but it seems to not be working at all. Even during the DAFNE course they were all over the place. I really feel like its a lost cause and I'm losing hope in ever getting back to my former levels. I am going to speak to my GP tomorrow and think I'm going to ask for my diabetes care to be moved. I have been with this place over a year and its not getting better but worse. The hb1 prior to the course was 60 (and that was largely down to the insulin amount I was injecting) and I was hypoing all over the place. I thought I had made progress in that I wasn't hypoing any more, but it had literally doubled (was 120). I know when I was first diagnosed I was told repeatedly that out of control diabetes was always a no no and I feel like it is getting worse not better. Sorry I know I'm venting but I'm so frustrated by this all. |
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Jun 18, 2019
Seanyseanuk
10 posts
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Topic: Carbohydrate Counting / Own meals Don’t get me wrong, I understand the weighing part with the rice, that I got and also its in the little carbs/cal book. I am never at the percentage in the book weight wise, but I use it as a guesstimate. The trouble for me is that I rarely eat rice on its own. I have it with mixed vegetables. I know for some vegs you count (carrots for example) but others you don’t and the whole process is entirely confusing.I’m not convinced my basal is right, but I have heard a lot of different things from my diabetes centre re the sugars spiking in the morning as part of the body reviving up. I am doing an amount of 22 units of Tujeo. I did ask one time about splitting (so doing 11 in the morning and 11 at night) but they weren’t in favour of it and actually advised against it. My morning sugars are always high, even though I can go to bed with them normal. I am doing my basal first thing in the morning on waking, and previously was doing it before bed, but nothing has changed sugar levels wise. I am waking with them at ranges of 18 to HIGH on the reader. My ratios are usually pretty good prior to meals, so for example todaymy sugars were 6.5 before lunch and I had brown rice and mixed vegetables so the carbs and cals book says 100g is 3 CP. I had mixed vegetables (carrots, peas, sweetcorn) so only counted the carrots and had a handful of them so added an extra CP for good measure. My sugar at the moment is 7.8 (and I ate lunch at 12pm). I came away with what I felt was like a hell of a lot of conflicting knowledge from DAFNE. A great deal of the course I did was all about buying prepackaged ready meals – which for me was completely useless as I rarely eat that stuff. |
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Jun 18, 2019
novorapidboi26
1,819 posts
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Topic: Carbohydrate Counting / Own meals You should be weighing out your rice and thats what will give you the carb amount......that process is the easiest part.....your ratio of 1:1 is a good place to start, but it might not be right..... before you can correctly evaluate the meal time ratios you need to be sure your background/basal is as close to correct as possible......is it? if it is then you need to evaluate each meal time ratio, separately and one at a time.......... if you are high before lunch your breakfast ratio needs to be adjusted to give more insulin, so going to 1.5units: 10g is the next step.....you then test that new ratio for a day or two and adjust further if required until its right.....then, move onto the lunch ratio,,,, did you come away from DAFNE with any basic knowledge? |
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Jun 18, 2019
novorapidboi26
1,819 posts
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Topic: General Discussion / Dismal Hba1c levels
What was HbA1c on the mixed insulin? Did your diet stay the same each day also? What is the main struggle with the new basal/bolus regime? |
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Jun 18, 2019
Seanyseanuk
10 posts
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Topic: Carbohydrate Counting / Own meals I’m afraid I have been diabetic since 1984. However I used to be on mixed insulin and had a perfect HB1C which is why this is proving so annoying. I am, as you say doing it based on total carb content, and started out on a 1:1 ration with the 10 gms carbs, but this isn’t working. It didn’t work on the DAFNE course either, and the teachers actually worked out the insulin levels for me and they didn’t go right at all throughout the course, so maybe it is just not for me. I am guessing DAFNE works for some folk, but maybe not all.I have been to the dietician, and done a food and blood sugar diary and they even changed my ratios and that’s why this is so annoying and frustrating. |
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Jun 18, 2019
Seanyseanuk
10 posts
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Topic: General Discussion / Dismal Hba1c levels Thanks for your message. Sadly this isn’t the beginning for me. I was actually diagnosed in 1984 and right up to about the last 4 years I had a perfect HB1, however was previously on mixed insulin which was discontinued so was moved on to the newer fast and slow acting types which is proving to be the really difficult. I have done much of what you have said already and presented it to the hospital (food diary, and insulin dosages and sugar levels but even they are confused and not sure).When I was taking mixed insuli, I used t vary it also (and did so with a lot of training from the hospital) so really knew my stuff, but what I used to do doesn’t work with the modern insulins. I am also starting to think that why the DAFNE protocol is better than nothing, it may also be somewhat flawed in that I have been contacted by a few different people not here but on a different forum in similar situations. |
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Jun 18, 2019
torana
53 posts
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Something needs to be done about this spamming. I have written a letter to the head office at DAFNE for further resources yet did not get a response. The forum site and its managers are doing a great job but clearly require assistance as it has become like a sieve for anyone to sell crap. This continuous spamming of our great forum is destroying the validity of our site and as stated before we have extremely vulnerable Type1 diabetics using the forum. |
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Jun 18, 2019
torana
53 posts
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Topic: General Discussion / Dismal Hba1c levels Hi SeanyseanukIt can be really difficult in the beginning but why not tackle the problem in an organised, methodical manner. Also, Always keep in the back of your mind that most Type1 diabetics are out of range at many points in their lives so you’re never alone. Firstly, write down your readings over a period of time as well as the food intake. If you use the DAFNE site you can ask other members to check out the blood sugars and make comments. Secondly, especially in the initial phases I would keep food intake to the same portions and foods so you can compare your results from day to day. This hopefully keeps the insulin intake also on an even keel so there are fewer discrepancies in results. Fourthly, I personally keep my times for meals fairly regular every day. I find it’s much harder to compare results over a period of time, say a week, when the blood sugars are scattered everywhere on the page. If all the results are in a straight line down a page throughout the week changes in blood sugars are much easier to read and ascertain. Regular timed meals can also take into account the longevity of fast acting insulin that can last up to 5 hours in the body and may be still be working when your asleep if dinner is at 9pm. Lastly , I find CalorieKing an excellent carb/food analyser. Please post your results so everyone in DAFNE can assist you in your quest for great HBa1c levels. |
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Jun 17, 2019
michaelj
45 posts
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Topic: Carbohydrate Counting / Own meals I presume you haven't been diabetic long as most people struggle to start with. Working out food properties can sometimes be a bit of mare but it gets easier the more you do it. Most packed food will have a nutrition breakdown on the box or bag somewhere so look for the total carbs content not the sugar content. Portion sizes are very often based on 10 gms carbohydrate.so 2 Weetabx for breakfast which contain 31 gms carb would equate to 3 portions of carbs. Potatoe is approx 2 ozs per 10 gms carb. Most vegetables don't count as they contain so little carbohydrate you can usually ignore them, (one clever person worked out you would need to eat 32 lbs of cabbage to make one portion. Diabetes UK I think do a food carbs book which will give you carb values for most everyday items. How much you eat will be down to you and how hungry you are. Make an appointmet to see a dietician and together you can work out how much carbs you need and then you can work out how much you need for each meal. You can vary meals quite a bit once you know what you're doing. Personally I stick to weight as it's more accurate than guesswork. Don't despair it does get easier. |
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Jun 17, 2019
Seanyseanuk
10 posts
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Topic: Carbohydrate Counting / Own meals So I'm a bit muddled. I was making my own lunches and taking them to work and I find that making my own food was enjoyable however with carb counting I'm finding it really difficult. I started eating short grain brown rice and some mixed vegetables. However in trying to work out the exact carb ratio - it seems impossible. I got told first off to do it by weight, which seemed reasonable, but then I got told elsewhere to do it by half a cup measurements instead? I feel utterly confused by the whole thing. |
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Jun 17, 2019
Seanyseanuk
10 posts
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Topic: General Discussion / Dismal Hba1c levels Well I did my DAFNE in October last year, and did the calorie counting etc. I had previously been having severe hypos throughout the day - and wasn't able to identify the exact causes. However in my recent Hba1c test, my mark had doubled. I was so upset, as I had been doing the calorie counting etc and adjusting dosage on the insulin. I know that during the course, despite following the guidelines in relation to insulin injections my sugars didn't stablise in the course either. So I'm really at a loss and so demotivated right now. |
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Jun 14, 2019
A1vickiheal
1 post
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Topic: Questions for HCPs / Anxiety and depression Hi Michael, just about everything people said above is true. I have only been diagnosed about 8 months and it was horrible at first but I am slowly getting used to it. I have even injected on a commuter train and no one even noticed. Good Luck |
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Jun 12, 2019
novorapidboi26
1,819 posts
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Topic: General Discussion / Flash and continuous monitoring CGM and Libre are simply just a tool to display your glucose levels...........the user still needs to be able to adjust their doses to respond to changes, and that's what DAFNE actually teaches...so the source of the glucose reading is irrelevant....The big difference between DAFNE educated diabetics and Libre users who haven't done any kind of training before getting their device, is that the DAFNE patients are more pro active in their control......so counting carbs accurately, getting the dose timing right, adjusting basal and ratios to within an inch of their life......whereas Libre users with no dose adjustment experience are more reactive, so responding to the data the Libre provides there and then....which works, don't get me wrong......but that approach shouldn't be relied upon completely.....there needs to be some foundation to work from in the event there becomes a problem with these new devices down the line..... so should Libre and CGM be incorporated/mentioned in future DAFNE courses or similar, yes......but it shouldn't overshadow the basic principals and skills that all diabetics should have a their disposal.... I use Libre and I am doing well with it......however it wouldn't have made much of a difference to the learning process during my DAFNE training... |
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Jun 11, 2019
HelenP
218 posts
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Topic: Questions for HCPs / Anxiety and depression Through jeans works but it does blunt the needle!Had one over zealous passenger report me to cabin crew on an airline...apparently I was injecting drugs! But over all it never bothered me and apart from the plane incident nobody ever questioned me...do it with attitude! (I would never do it in or near a toilet...what are they thinking?) Helen |