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Jun 27, 2019
HelenP
218 posts
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Topic: General Discussion / infusion set issues Thanks, Marke. That is what I understand also, but it is very frustrating and to his credit the endocrinologist registers that for me it is a problem and probably accounts for at least some of my HbA1c (hovers around 7.0). We have tried flooding the site with a breakfast dose (to clear it) but I then get into trouble as the actual dose getting through is difficult to assess. I have also tried injecting for a breakfast dose. I have been a diabetic for over 40 years so there have been a lot of injections before the pump as well. Helen |
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Jun 27, 2019
marke
655 posts
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Topic: General Discussion / infusion set issues sorry to disappoint you , but I have used the quick set for about 3 years ( my pump is due for replacement at the end of the year and they change them in the UK every 3 years) and I tend to get an increase in BG when I change the set. Not as big a rise as you but definitely a non-normal rise. This I believe is what you would expect to happen. This is because when you insert it, it drip feeds insulin into you. This insulin needs to pass through tissue to reach the blood and become effective. With injections you put a relatively large dose in all at once and it does the same thing, but because the pump only puts small amounts in, there is less of an 'absorption' area so it takes a while to create a 'flow' from the set to the blood. In an ideal world you wouldn't change the sets and the flow would always be there. Sadly this is not possible as people who inject manually know, the area of injection hardens and if you use the same sites for injection they become less effective, the same is true of pumps. One day they will probably work a way around this if stem cell research doesn't make it all redundant, we can only hope
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Jun 25, 2019
marke
655 posts
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Topic: Site Development / Spammers Hi Torana, You seem to have a fundamental misunderstanding about the site. It is NOT run by the DAFNE Programme but independently by two people i.e Simon and myself. This latest mass attack of SPAM occurred when we were both on holiday and so we could do little about it. I am now back and have removed all of the SPAM from the forums.The difficulty is how do we stop it. It is not automated as they have to register an account by making a number of selections. We could insist on an email verification when signing up but this has a number of issues. I won't bore you with them as they are very technical but its hard to block people on that basis. I have thought about blocking normal 'users' that don't have a centre code but we don't want to bar any diabetics with a real need for help or advice. My only hope is a more intelligent blocking mechanism but that will take time to design and implement. Believe me it is as annoying for us as it is you. However unless somebody finds a big pot of money somewhere and given its the NHS and home users not very likely we are just going to have to live with it until they get bored. |
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Jun 20, 2019
HelenP
218 posts
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Topic: General Discussion / infusion set issues Hi, I have been on a pump now for about 10 years (on my 4th or 5th pump). When I was initially put on a pump the Diabetic Educator put me onto a manual insertion infusion set as I was not needle phobic. I accepted this and have continued to use this or latterly the Medtronic equivalent. Searching the Medtronic site I came across advice that the infusion set I am using (Silhouette paradigm) is designed for young, lean or athletic frame. I am not young, athletic nor lean...I experience a rise in BG immediately after the change of sets.. Advice to date has been deal with evening meal (6:00pm) and then after about an hour change the infusion set and do not eat anything until morning. If you wake (which I often do) correct then and hopefully it will be almost back in range for breakfast. So before meal it can be around 7, deal with dinner and it can be 9 after an hour or so. Change the set and then at midnight it can be 16...if it is over 15 I usually inject as I need to have it come down, but sometimes the system clears itself and the pump can suspend before I wake. Is the fact that it is unreliable for about 12 hours out of 72 good enough? Similarly if I let the infusion set go for the full three days BG often starts to slowly rise. This I believe is because the site is healing over. On my own volition I have now changed to the recommended infusion set for the non young, non lean, non athletic and experienced some (little) success but it is probably too early to tell. Any advice? I am now using the Mini-med quick set (manually inserted). Helen |
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Jun 19, 2019
novorapidboi26
1,818 posts
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Topic: General Discussion / Dismal Hba1c levels My qualifications is that I've spent many years on a mixed insulin and failed and spent many years using DAFNE and succeeded....now pumping...I didn't mean to come across aggressive or anything...I just believe that if you understand your own control you can pin point what exactly is causing the issues.. Getting it right during the actual course is not likely.....unless you had been already doing something similar before hand....as you came from a mixed regime that hadn't happened.... Now a mixed insulin is suitable for some...but if you want the flexibility of being able to eat what you want when you want....drink alcohol, excercise...all while maintaining good control with a decent HbA1c....DAFNE is the first step to that goal.... The basics principles stayed the same but my approach and tactics all changes to suit my needs....this needs to happen for you to.... You talk about insulins being responsible....but there are different ones to try that are still basal/bolus....the only difference from your previous stuff is that it's been seperated....to allow you to adjust them independently of each other....it's simple maths and logic... What was your best HB on the mix and what did you eat? Are you on a split dose of basal and if so are the doses correct...? |
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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
1,818 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
1,818 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
1,818 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
1,818 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. |