Other Diabetics?

[nathannathaniel]

Well I think it's what you feel comfortable with.

For me personally I feel anything below 4 mmol/l is too low and really classed as a hypo. But that's because I don't want to see any of my readings below 4 even if it's 3.9.

But if my specialist asks me if i've had any hypos then I will only say yes if it's been below 3.5 because that's what they've trained me on.

I think that's appropriate.

 

[LLyons85]

Please test - if you have the will power to test + can get strips kkep at it, it will pay off.

I've been diabetic nearly 20 yrs - most HBA1c's been 12-14. only ever tested about 3 days before clinic + once never tested for neary yr + now i am paying for it.

I need a kidney transplant + they are also hoping to do pancrease as well.

Some people have said to me that its great cus will prob have no diabetes anymore, but transplants usually last 15 yrs approx + i have 4yr old son and will have alot of anti suppressive drugs to take for rest of life.

So please lookafter your self - if you dont no one else will!!!!

 

[JohnCo]

Sorry to hear about your situation Llyons85. A fairly typical scenario it would seem?
I do wonder, just how many longer term D`s get the treatment from the NHS after they suffer from the affects of poor control!
My mum only had real control after suffering heart problemns and having to go onto insulin after 15 years - however , an inspiration to myself to aim for the closest possible control!

 

[Abi]

In their defence I think D UK suggest a target of 6.5 in those not at risk of severe hypoglycaemia and 7.5 in others. Trouble is even minor hypos can have devastating consequences for some people depending on employment etc. I started another thread last week about being a bit disappointed with my HbA1c ( with which the nurse at my GP practice was very happy- I would rather she praised me for my effort and for it not being any higher but then offered some useful tips for reducing it a bit without too many hypos)

 

[DeusXM]

When I questioned it and suggested that maybe 6.5 or even lower would be a better target she said getting less than 6.5 is very difficult without loads of hypo's!

Which of course sums up everything that's wrong with the NHS's attitude to diabetes treatment. Getting a sub-6.5 A1C isn't easy, true, but the blanket assumption they make that it is only possible with lots of hypos is unhelpful and inaccurate. It's as if they're prescribing Lantus and Novorapid but think everyone's still on Mixtard or Insulatard.

 

[Tezzz]

I get cross inside when I speak to T2 diabetics who think poping a tablet is a cure all.

The other day I got asked at W why I keep testing, eat small meals and walk everyehere. The simple answer is I watched my father get complications.

Now guess which one of us can't feel one of their feet, recently got circumcised and has worsening eyesight... oh and for good measure they have an A1C of 12%?

FYI my last A1C was 5.5%.

I'll never knock someone who makes an effort to improve.

W is that swear word place I go to for 39 hours a week and get paid for doing it.

 

[AJLang]

But please always remember that there can be a good reason for not having a good HBA1C. For example I have gastroparesis and a HBA1C between 7.5 and 8 is very difficult to achieve although I do manage it - and my consultants say that I am doing excellently for someone with gastroparesis. They don't even expect the pump to improve the HBA1C but want to reduce the bad hypos that I can have ie hypos that take two bottles of Lucozade and two hours to recover from. I may need two extra lots of humalog during a night or alternatively wake up in the early ways with a hypo. It is unpredictable. As a result of the gastroparesis and how it causes erratic BGs I will obviously be at increased risk of complications but that is not my fault. I am sure that there are many other people who, for different reasons, try to achieve a good HBA1C but are not able to.

 

[lauraw1983]

I was also under the impression that hypo was under 4.
Does this mean that if I feel hypo symptoms at say 3.8 I could just treat with a small amount of carbs or should I still treat as a hypo with glucose?

This is exactly what DAFNE will teach you, below 3.5 you TREAT the hypo with fast acting glucose (15g carbs) Test again in 15 mins to make sure it has risen enough.

Between 3.5-4.5 you EAT to raise BG up.

If you do both you will just end up too high, there is no need now to also eat a carb snack after you have treated the hypo with fast acting glucose, unless it is bedtime you might want a small snack too to keep you steady at night.

 

[Abi]

I think that targets should be individualised. I'm hightly insulin sensitive plus with type one for 26 years Mr Pancreas has become completely redundant as fat as supplying insulin goes- hence small changes in dose / absorption etc can mean big swings in bsl. Gastroparesis must be a complete nightmare as food is generally one of the few variables over which we have some control. I'm not sure how much blood glucose variabilty and it's affect on microvasculature has been researched but I know some authorities believe huge swings in bsl are as harmful if not more so than having a slightly high A1c. I think some people struggle as much to achieve an 8 ( with mroe hypos) than others who achieve a 7 or even < 6.5 %. But I agree it's wrong to discourage people who want to and can do so safely, from trying to achieve really tight control- and who knows- if their methods get good results they would maybe communicate with someone who was really struggling- and if unable to get excellent control it may help them to at least improve things
What really concerns me is people berating patients for having a slightly high reading without looking at regime. testing, amount and quality of education and other factors and whether theya re having hypos. Unless an individual is in denial or hightly irresponsible I think a carrot works better than a stick

 

[lauraw1983]

Absolutely - what I'm talking about are doctors who tell their patients that their 7.1 A1c is fine and they're doing a good job of controlling their diabetes, rather than telling them they are going in the right direction and that with more work they can get a healthy A1c.

I realise the importance of encouragement but I also think too many people and doctors get complacent. Doctors can't let people go round thinking that once they get in the low 7s that there's no room for improvement and people shouldn't bother trying. I don't get great A1cs (last one was 7.2) but my current self-imposed target is 6.8, for now. My doctor has tried to discourage me from this by telling me that my A1c is apparently a lot better than most of the people she sees at the clinic. My response to this is always the same - I won't have better health by having better numbers than unhealthy people, I'll have better health by getting the same numbers as healthy people.

The attitude that something is 'good for "a diabetic"' is the single biggest reason why so many people suffer complications. It's the equivalent of telling someone with cancer that they don't need to worry about getting treatment because they've fewer tumours than someone else with cancer. The NHS (and gosh darn it, Diabetes UK while we're at it) needs to chuck out the idea that our health should be held to a lesser standard than everyone else if it wants to help us stay healthy.

Totally agree, especially the bold bit. It frustrates me a lot when I am compared to other patients (in the general sense) in the diabetes clinic I attend, because I am VERY aware of the complications of this condition and want to do whatever I can to reduce that for ME. whether other people want to ignore that or not is up to them, and if they want an HbA1C well above the targets, well that's up to them.

It annoys me that it's seen as not the norm to have a GOOD A1c, I have been working damn hard to get mine to where it is (6.8% last time, next one in November but might be higher as have had a rubbish time switching to Levemir when meant a few weeks of higher readings) If other people don't want to work hard for it then that's their choice. And I am NOT saying they don't, and that high A1c's are always caused by people not taking as much care, but it must be true for some patients.

It's a big reason I want a pump, for the very best control possible, with more flexibility, yet the guidelines say it should be for people with a high A1c, or with bad hypos. So someone who IS looking after themselves but wants the BEST solution currently out there is denied it? Grrrr, makes me so cross.

 

[mcdonagh47]

Would I be correct in assuming that the majority of fellow D`s, in the general populace, don`t bother with keeping as close control of BG. as possible?
It just seems to me that whenever I meet (in the last 5 Months) another D., they are blarse' about their levels! A typical answer would be "I test once/twice a day/week" or "I just cut out sugar"! One didn`t want to know at all!!
Ok, maybe the 86 year old gent this week didn`t test because of his age - but He was fit enough to walk his lurcher 2 miles daily and I reckon He was as fit as a lot of 60 year olds!
Or am I taking this illness too seriously? (Although I did go 4 days this week without doing any finger pricking )

Just reading Ben Goldacre's "Bad pharma" in which he exposes the ruses used by pharmas to get their drugs etc prescribed / reported on.

I was shocked to find that he questions the UKPDS - the study that shows that good control significantly reduces the risk of complications. Its the UKPDS upon which much of the current recommendations/ targets are based. And as Goldacre says the Ukpds has a "slightly legendary status" among medics ( and diabetics).

But Goldacre says the 15 endpoints were bundled together and an overall 12% reduction in complications reported for the composite outcome. In fact says Goldacre only one endpoint showed a real improvement for tight control - the number of referrals for laser treatment for retinopathy. And that one improvement accounted for the whole improvement of the composite outcome in the UKPDS.

Goldacre says bundling all the outcomes together is a standard way of making results on one minor outcome make it look as though the whole group of outcomes are improved.

Of course, good control, might well (should ?) improve the risk of complications but Goldacre seems to have kicked away one of the central research planks supporting that idea. He says the UKPDS shows that "rumours, oversimplifications and wishful thinking" can spread throughout the Academic world as easy on discussion groups on the internet.

Ruari Holman, the main lead in UKPDS and "Mr. Type 2 Diabetes" HAS got to reply to this interpretation by Goldacre ( in the Chapter called 'Bad Trials").
And we wait with bated breath about what Holman has to say.
.

 

[lauraw1983]

Just reading Ben Goldacre's "Bad pharma" in which he exposes the ruses used by pharmas to get their drugs etc prescribed / reported on.

I was shocked to find that he questions the UKPDS - the study that shows that good control significantly reduces the risk of complications. Its the UKPDS upon which much of the current recommendations/ targets are based. And as Goldacre says the Ukpds has a "slightly legendary status" among medics ( and diabetics).

But Goldacre says the 15 endpoints were bundled together and an overall 12% reduction in complications reported for the composite outcome. In fact says Goldacre only one endpoint showed a real improvement for tight control - the number of referrals for laser treatment for retinopathy. And that one improvement accounted for the whole improvement of the composite outcome in the UKPDS.

Goldacre says bundling all the outcomes together is a standard way of making results on one minor outcome make it look as though the whole group of outcomes are improved.

Of course, good control, might well (should ?) improve the risk of complications but Goldacre seems to have kicked away one of the central research planks supporting that idea. He says the UKPDS shows that "rumours, oversimplifications and wishful thinking" can spread throughout the Academic world as easy on discussion groups on the internet.

Ruari Holman, the main lead in UKPDS and "Mr. Type Diabetes" HAS got to reply to this interpretation by Goldacre ( in the Chapter called 'Bad Trials").
And we wait with bated breath about what Holman has to say.
.

Surely it's common sense that keeping your A1C as close to "non-diabetic" levels as possible (without loads of hypos which affect your life) will reduce the risk of complications?

I know they rely more on meter readings than A1C for the likes of pregnant women though here as they show daily what is really happening. With them all being downloadable now, they give a much better picture than an A1C does. They download my meter at every clinic appt I go to now aswell though and look through that too at the appt, identifying the highs and lows.

 

[DeusXM]

As a result of the gastroparesis and how it causes erratic BGs I will obviously be at increased risk of complications but that is not my fault. I am sure that there are many other people who, for different reasons, try to achieve a good HBA1C but are not able to.

Indeed and I sympathise, I really do. But we should never be discussing 'who's fault it is' when it comes to A1c. It doesn't matter. Yes, better A1Cs require more work. Yes, not everyone is prepared to put in that level of work as it will compromise on their lifestyle to the point it'll make treating their diabetes pointless, as they'll simply be existing, rather than living. I get that. But none of that changes the fact that people without diabetes don't tend to get the complications of diabetes, which means that all patients with diabetes should be encouraged to aim for non-diabetic A1Cs provided this does not seriously compromise their quality of life.

To take your case - yes, you've accepted that your issues will make getting a better A1C harder. But would you really want a doctor telling you not to even bother trying? I suspect probably not - I think we'd all rather have doctors who drive us to aim for the best of health, even if we can't always achieve it.

Unless an individual is in denial or hightly irresponsible I think a carrot works better than a stick

I'm a firm believer in using both. The fact is, just because something is a struggle to do is not a good reason not to do it. Obese people find it hard to lose weight. Should they not bother, because it's a struggle? Should they just accept being overweight in that circumstance? EVERYTHING about staying healthy (regardless of whether or not you have diabetes) is a struggle. Yet we won't see the recommendations for acceptable weights or blood pressure or anything else change because the difficulty in achieving good numbers for those has absolutely no bearing on what a good number actually is. It's exactly the same for an A1c. In a perfect world, everyone with diabetes would control their condition to get A1Cs under 6 and every doctor would make sure they do so. We don't live in a perfect world...but I don't see that as a reason why we shouldn't try to make it so.

Surely it's common sense that keeping your A1C as close to "non-diabetic" levels as possible (without loads of hypos which affect your life) will reduce the risk of complications?

Precisely. I don't need a study to demonstrate that, it's simple logic. You can prove it straight off the bat as well in your clinic - go find someone with retinopathy or a missing foot or whatever and ask them what their A1Cs are usually like. Guarantee you that they'll definitely be in the non-diabetic range.

 

[AJLang]

I don't want to get into a debate about this. However I want to point out that getting a better HBA1C for me wouldn't be harder it would be nearly impossible without a CGM unless I wanted to risk massive and/or frequent hypos........and I am glad that the doctors congratulate me on doing so well because with gartoparesis it is ..... Hard work.

 

[Abi]

Deux- as a health care professional-we do compromise to an extent with other factors such as weight and blood pressure- We accept higher blood pressures for certain groups such as elderly who are more at risk of falls if overmedicated and we also praise obese people for weight loss even if they have not achieved the desirable weight range
I wonder exactly what you are implying when you suggest use of a stick alongside a carrot- imposing a fine if a person's level is above targets, reducing the quantity of strips available, switching off a pump back onto mdi- or off of analogues and back to older insulins/ mixes? Reducing benefits, removing driving license even when the patient is not having problems with hypos or complications which would make this desirable, forcing them to stop going to work and hence depriving them of income or banning them from leisure facilities---
At the end of the day sailing to close to the wind in an insulin user means greater risk of hypos with potentially devastating physical and social consequences-it's a little different from having to cut out your favourite foods and feel hungry at times
Personally I feel that having diabetes is stick enough in itself . However, those who have neglected themselves for a number of years with significant complications occurring as a result may have some suggestions as to what may have motivated them or demotivated them to do better

 

[bev]

Hi all,

Just to throw another spanner into the works.🙂 Whilst we do take note of the HBA1C we also now look more at the Standard Deviation of those levels. If the SD is under 3 this means that you will suffer very few complications (if any). This doesnt meant that if your HBA1C was 12 with a SD of under 3 you wont get any complications - it means that any decent level of under 8 with a SD of under 3 will almost certainly mean you wont be looking at complications. Gary Scheiner (think like a pancreas) gave a talk which we attended and in USA this is what they tend to look more at - deviations that are higher then 3 mean that you are on a rollercoaster of levels which causes more damage due to the high/low swings - so in a way it would be better to have an HBA1C of 8 as long as the SD is under 3. I hope I have explained that right!

Alex (14) has an HBA1C of 7.1% which is higher than we would like - but he is growing and producing hormones all over the place and our clinic have said they think its really good considering the night levels whilst he is growing. I can see on his graph (CGM) that about twenty minutes after falling asleep his levels start to rise - this isnt a basal problem it is a growing problem! He tends to have these for about three weeks and then back to 'normal' levels - so it is fairly difficult to get that perfect HBA1C for growing teenagers.

Someone on the CWD list also mentioned 'glycation' (not sure exactly what this is though) but basically you could have two identical twins both treat their diabetes the same and react accordingly - but one could have a perfect HBA1C of 6% and the other could have one of 8% - it is the rate at which the body 'glycates' - apparently! So whilst the HBA1C is a good guide to how a person is coping with their diabetes - it doesnt tell the whole story - it is just a guide and for some people the magic 5 or 6% will never be achieved - not because they dont put as much work in - just simply that we are all individuals and we dont yet know enough about how/why some find it more of a struggle than others - even though some put more work into it but cant achieve the same results.🙂Bev

 

[DeusXM]

I wonder exactly what you are implying when you suggest use of a stick alongside a carrot

Certainly nothing like you're suggesting. My 'stick' would be doctors telling people with A1cs over 6.5 that they need to sort themselves out and need to do better. Again, the clinic analogy holds good - the best thing a DSN ever said to me was that I needed to work harder at my diabetes or I'd end up like all other people in the waiting room. And the carrot would be praising them every time they lower their A1c - something again one of my DSNs would do, usually with a "great step forward - so what's your next steps to improve?"

At the end of the day sailing to close to the wind in an insulin user means greater risk of hypos with potentially devastating physical and social consequences

I'd dispute this. With good, intensive control, there is simply no reason why an insulin user should be at a greater risk of hypos. I'm not saying it's easy (far from it) but I think this is symptomatic of the wider issue, which is that this country's entire methodology for diabetes treatment is based on avoiding hypos caused by prescribed medication, rather than maintaining stable blood sugars at a normal level. It's the rationale behind why people on insulin are still told to eat frequently and base every meal on starchy carbs. Doing so makes it near impossible to maintain a normal weight or normal blood sugar. But this is always accepted as 'good' because it prevents hypos, and then the NHS runs around scratching its head as to why people have so many complications. Or rather, it doesn't because it's about deferred responsibility. Complications take time to develop and don't leave a inconvenient paper trail leading to one particular doctor - and can be safely blamed away on the patient or an inevitability. Whereas if someone has something go wrong from a hypo, someone might blame the doctor for over-prescribing. That's why the NHS is more worried about stopping hypos than helping you control your blood sugar.

I don't think diabetes treatment is a zero-sum gain - I don't think the only two choices open to us are either loads of hypos, or complications caused by high blood sugar. I can understand why individuals with diabetes might choose to limit themselves in their view of what's possible but I certainly don't think people in healthcare should be perpetuating and encouraging such a pessimistic point of view.

 

[Abi]

I'd be very interested if you could post a link to this SD business- my statistical knowledge is useless- are we talking about the " normal distribution curve where most readings are within 2.5 standard deviations of the median?- sorry complete mental block here- should know better- Had to know a smattering of stats in Uni but this was > 15years ago.
Regarding the glycation- I wonder if someone glycates more readily- i.e. higher HbA1c this also means they glycate other molecules more readily hence putting them at more risk of complications. If stability is important as well as overall values then understandably not necessarily so.
I recall reading John Walsh's books "using insulin" and pumping insulin and he definately highlights the potential for large fluctuations to harm- can't remember whether free radicals are implicated here

 

[everydayupsanddowns]

I'd be very interested if you could post a link to this SD business- my statistical knowledge is useless- are we talking about the " normal distribution curve where most readings are within 2.5 standard deviations of the median?- sorry complete mental block here- should know better- Had to know a smattering of stats in Uni but this was > 15years ago.
Regarding the glycation- I wonder if someone glycates more readily- i.e. higher HbA1c this also means they glycate other molecules more readily hence putting them at more risk of complications. If stability is important as well as overall values then understandably not necessarily so.
I recall reading John Walsh's books "using insulin" and pumping insulin and he definately highlights the potential for large fluctuations to harm- can't remember whether free radicals are implicated here

I'm pretty sure JW (in pumping insulin) suggests that weeks of steady 20mmol/L create less of some eye-damaging protein (kinase something?) than 5-20mmol/L variation over the same period 😱

And my understanding of SD is a measure of the spread/scatter of a range of results around the mean. SD is expressed in the same units as the mean value.

So average BG of 6, with and SD of 2 mean that the vast majority (90% or something) of results lie between 4 and 8 (-2 and +2 from 6).

 

[mcdonagh47]

Hi all,

Just to throw another spanner into the works.🙂 Whilst we do take note of the HBA1C we also now look more at the Standard Deviation of those levels. If the SD is under 3 this means that you will suffer very few complications (if any). This doesnt meant that if your HBA1C was 12 with a SD of under 3 you wont get any complications - it means that any decent level of under 8 with a SD of under 3 will almost certainly mean you wont be looking at complications. more work into it but cant achieve the same results.🙂Bev

There is an interesting post on all of that in the link below....which basically says not enough is known about SDs to back up the claims made for its importance ...and also that only 11% of the risk for microvascular complications actually comes from high A1cs ! ....

http://www.diabetesmine.com/2010/12/the-mixed-up-role-of-standard-deviation-in-diabetes-care.html