Dismal Hba1c levels

22 posts, 5 contributors

Search the DAFNE Online Forums

 
torana DAFNE Graduate
Royal North Shore Hospital, St Leonards, NSW
49 posts

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.

Seanyseanuk DAFNE Graduate
Central Middlesex Hospital
10 posts

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.

novorapidboi26 DAFNE Graduate
NHS Lanarkshire
1,800 posts

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?

Seanyseanuk DAFNE Graduate
Central Middlesex Hospital
10 posts

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.

jh0 DAFNE Graduate
The Queen Elizabeth Hospital, London
17 posts

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.

Seanyseanuk DAFNE Graduate
Central Middlesex Hospital
10 posts

“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.

jh0 DAFNE Graduate
The Queen Elizabeth Hospital, London
17 posts

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.

torana DAFNE Graduate
Royal North Shore Hospital, St Leonards, NSW
49 posts

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

Seanyseanuk DAFNE Graduate
Central Middlesex Hospital
10 posts

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.

novorapidboi26 DAFNE Graduate
NHS Lanarkshire
1,800 posts

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...