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Jun 18, 2019 Seanyseanuk 10 posts	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.

Jun 18, 2019 jh0 16 posts	Topic: General Discussion / Dismal Hba1c levels Seanyseanuk said: 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. 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.

Jun 18, 2019 Seanyseanuk 10 posts	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.

Jun 18, 2019 Seanyseanuk 10 posts	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.

Jun 18, 2019 novorapidboi26 1,819 posts	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?

Jun 18, 2019 novorapidboi26 1,819 posts	Topic: General Discussion / Dismal Hba1c levels Seanyseanuk said: 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. 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?

Jun 18, 2019 Seanyseanuk 10 posts	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.

Jun 18, 2019 Seanyseanuk 10 posts	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.

Jun 18, 2019 torana 53 posts	Topic: Site Development / Spam destroying DAFNE forum 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.

Jun 18, 2019 torana 53 posts	Topic: General Discussion / Dismal Hba1c levels Hi Seanyseanuk It 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.

Jun 17, 2019 michaelj 45 posts	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.

Jun 17, 2019 Seanyseanuk 10 posts	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.

Jun 17, 2019 Seanyseanuk 10 posts	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.

Jun 14, 2019 A1vickiheal 1 post	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

Jun 12, 2019 novorapidboi26 1,819 posts	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...

Jun 11, 2019 HelenP 218 posts	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

Jun 11, 2019 torana 53 posts	Topic: Questions for HCPs / Anxiety and depression Hi Michael. I too used to inject in the filthy toilets and sterilise my blunt steel needles and glass syringes in boiling water before going to school. I quickly realised that most people today in shopping centres simply don’t look or even care. They have more important things on their mind such as KFC nuggets. It’s interesting your comments about urine testing once a day. It was never a stable method of testing blood sugars due to the sugars in the urine being held in the bladder for long periods, yet better than nothing. It’s also fascinating how one can test once a day and hopefully remain alive after many years. I have never heard the advice to test once a day from any doctor over 50 years? It appears some Type1 diabetics for unexplained reasons can minimally test and have minimal damage from long term high blood sugars yet most of us pay the ultimate price. Are you one of the lucky few?

Jun 8, 2019 michaelj 45 posts	Topic: Questions for HCPs / Anxiety and depression Many years ago I was criticised for doing an injection in a restaurant and told I should do it in the toilets. My response was, Next time you go to your doctor for a jab tell him you want to do it in the toilets and see what he says. Personally as long as you are discreet about it most people will not even notice. As regards blood sugar levels Whden I was diagnosed on 1961 there were no blood sugar testing devices only a very haphazard urine testing system which although better than nothing didn't tell you a lot. Regarding sugar levels my doctor just said as long as you get one decent reading a day yuo'll be fine a principle \|Oi have lived with since.

Jun 7, 2019 marke 686 posts	Topic: General Discussion / Spam thanks, but we both work in IT and know what the issue is. Sadly it is harder and harder to stop. The spam we are getting is generally NOT automated. We do have catchpa's etc, but all of these measures are relatively easily bypassed. There ARE ways to reduce SPAM but until ISP's and big email providers take the issue seriously and implement them it's very hard to block SPAM, especially on a site run with no finance to pay for filtering packages.

Jun 7, 2019 marke 686 posts	Topic: Questions for HCPs / Anxiety and depression Hi, I'm with everyone else ( I guess would be :-) ) don't worry about it. The most interest thing I have is I am now lucky to enough to have a pump. No public injections just questions about my weird little device I play with at Meal times.The only time I expect looks but never seem to get them, is when I go through Airport security. i take the pump off and put it through the scanner, then collect it the other side. i stand there and re-attach what look like wires to my body and no one has ever really paid any attention or questioned me ! When I had to do injections I just got on with it and didn't make a fuss and generally no one took any notice. I appreciate that it is easy to say don't worry about it, but I always found it was an opportunity to explain about Diabetes, what it is and why I had to inject. People are usually interested and sympathetic and rarely judge you.....

Jun 6, 2019 NottsKnots 10 posts	Topic: General Discussion / Dafne Diary Carolyn81 said: Do you still have a link available Marke. If marke hasn't been able to get back to you, I have a PDF version. The font is a bit small, but hopefully you know what all the boxes are for by now, and it leaves more room to write in the data . PM me with your email address and I’ll send it across. Edit: I’ve put it on OneDrive, so this link might work? First time I’ve tried sharing, so let me know if it doesnt allow you access. https://1drv.ms/b/s!AmkuNF75s3tIghUj_M0VaQZg1nQX

Jun 5, 2019 NottsKnots 10 posts	Topic: Questions for HCPs / Anxiety and depression I lost any inhibitions 25 years ago whilst reading about a girl who was traveling around Africa; there werent really any facilities that she could use, so she injected through jeans! I dont think anyone these days would recommend that, but if she could do that in public, then what the h3ll was my problem. Be discrete - if you have loose clothing a belly jab can be done almost invisibly behind a table whilst sitting (at a restaurant or at a work desk). If you are wearing a jacket (suit or coat) then its an easy shield. Heck, I even do it on planes, and I cant hide that from the person sitting next to me. I find that getting the test kit out for a BG measurement tends to diffuse any thoughts they may have. Get a snazzy insulin pen - no druggy has a designer pen, so that also tends to make anyone who notices less concerned. Its more and more common to see people, and I always mention diabetes to colleagues - for safety reasons, in case I ever have a bad hypo and need help. That way everyone knows whats going on and pretty much ignores me after day 1 (and being a contractor, I work for a lot of different clients). I try to spread the word far and wide, so more people become aware anyway. As already said, no-one else really cares or notices what you get up to; the more observant in society tend to be the more intelligent and have some idea of the difference between medication and abuse. So, do it and dont worry about it: give it a few weeks and you’ll forget all about it. NEVER miss the dose for something as daft as that: avoiding the complications of diabetes is WAY more important to you than a little perception of someone elses thoughts (that they are probably not having - its almost certainly in your head only, so banish it). Good luck.

May 29, 2019 torana 53 posts	Topic: General Discussion / Spam This continuous spamming of our great forum is destroying the validity of our site! I have copied ways of minimising this crap. Maybe others have suggestions. It’s our site! Spam is the scourge of the internet and can do significant damage to your community if it is left unchecked. There are two kinds of spammers to worry about: spambots and human spammers. Bots are unintelligent software programs that automate the posting of spam and can usually be easily defeated since they are rigid in their behaviour. Human spammers present a greater challenge since they can bypass the traps that catch bots and can quickly change their behaviour. Spam post in forum Why would humans be spamming your forum and how can this make money? Most forum spammers aren't trying to get you to buy something, they are attempting to get higher rankings in search engines by creating lots of links from your pages to their own site. Here are some suggestions on how to defeat the spammers: 1. Make sure links in your forum are set to ‘nofollow’. This tells search engine crawlers not to follow the links and therfore, SEO spammers will derive no benefit from spamming your forum. (Vanilla’s links are nofollow by default.) 2. Make sure registration includes a CAPTCHA. Captcha’s are those slightly deformed images of words and you see on sign up pages. Captcha’s do a pretty good job of keeping out spam bots. 3. Require email confirmation before allowing someone to post. Bots and humans can get around this but it's an extra bit of efforts that most real people won't mind. 4. Enable anti-spam plugins. These plugins can automatically detect suspected spam based on links, IP addresses, email addresses and the comment itself. Keep in mind that these plugins are not 100% effective and do sometimes return false positives. 5. Don’t allow editing of comments after a few minutes have passed. A frequent trick used by spammers is to create a comment that doesn’t look out of place (For example: "This is a great post, very insightful.") and then will come back after a couple of weeks and edit the comment to include spam links. 6. Get the whole community involved. Ask members to help out moderators and flag spam. In Vanilla, this can be done with the Spam Reaction. 7. Be ruthless. Moderators and admin should review the spam queue on a daily basis, ban spammers and delete all their content. 8. Only allow members that have proven themselves and have a reputation to be allowed to post links. In Vanilla, it’s possible to prevent members with a low Rank from posting links, editing comments, etc. Ranks are earned by accumulating reputation points or making a certain number of posts. 9. Provide information on advertising and partnering opportunities you might offer and make it clear in your community guidelines what is and what is not acceptable promotion. This can help with accidental spammers who are trying to legitimately sell something to your audience. While spammers are always looking for ways around your defences, following these suggestions will help to eliminate spam.

May 27, 2019 sjohno 37 posts	Topic: General Discussion / Dismal Hba1c levels torana said: Hi sjohno Your results are remarkable over such a long period of time and must have been a huge effort. Even more, it is both alarming and of utmost concern that your results are statistically better than 92% of Type1 diabetics in Britain! You may have individualised your “normal eating” and routines over time but I wish you had been at my DAFNE course for advice that works! Guidance for gaining long term low Hba1c results by what I deem “experts” like yourself would be of great benefit to the 92% of us out of range. Hi torana Just had the recent Hba1c results back, the last one was 6.3 in Sept 2018, May 2019 is 6.5. I'm happy considering I had 6 weeks just sitting .