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Other Diabetics?

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
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 rance 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).

Hi Everydayupsanddowns,

Phew - thankyou! I am useless at maths - so couldnt have explained this easily - we just go on the results! I think there was a thread about this last year - I had a look but couldnt find it - it was quite a long thread with lots of explanations from various people who were great at maths as I recall! 🙂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

Interesting (and actually quite confusing!) link... but I'll continue to use SD as a valuable marker of my understanding of my own control I think 🙂

If I have identical A1cs two years running and an SD of 4 in one year, but 2 in the other and this (statistically speaking) means I'll have had far fewer hypos and hypers in the year with the lower SD that alone makes it worth aiming for IMO. Each to their own though.
 
Handy I'm an optimist after reading this because my BGS easily fluctuate up to 18-28 at night......and apart from getting up to do more humalog injections there is nothing I can do about it because there is no telling at what time or at what rate my stomach will start digesting the food. I love severe gastroparesis🙂
 
I think that's the point though isn't it AJLang - we can all only do the best we can with what we have to deal with. There might be ways to minutely improve things (in your case waking every hour every single night to test/adjust) but there comes a point where pushing for tighter control in the hope of warding off future nasties has a greater negative impact now. The balancing act between the two we all have to wrestle on an ongoing basis.

There was a (very coarse) phrase coined by some of the wheelchair basketball players mentioned during the late night 'last leg' shows during the Paralympics which sums this up, but is entirely inappropriate in the context of a family-friendly forum.

If anyone heard it, they''ll understand the sentiment of "You can only **** with the **** you've got".
 
You are exactly right🙂
 
Here's another spanner for you Deus...whdn I was diagnosed with proliferative retinopathy requiring laser before & during my second pregnancy, my HbA1c was between 5.6 -6.3%. yet just about every arrogant, assuming jumpec up **** (expletive of choice) in the 'eye casualty' dept in hospital would disdainfully sneer at me something that seems to chime with your opinion "oh, you MUST have bad control!" (subtext: 'you stupid moron lazy diabetic, this'll teach you...")

How I got through that time without losing my temper & manually resetting the idiot in front of me I will never know, but it helped to be able to tell them what they should have known: it's not always 'that simple' & for example pregnancy in diabetic women is strongly linked to proliferative retinopathy even with excellent control. Or to put it another way, sometimes **** just happens. I suspect a lot of people's apathy re their diabetes is down to feeling un-enabled, kicked & judged by just about everyone from the man on the street to fellow diabetics who one would hope might get their facts a bit straight & be a bit understanding. Just my opinion of course...
 
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Well, at the risk of inflaming this debate, you've had diabetes for over 30 years. You've explained that during your second pregnancy, your A1C was always lower than 6.3%. Getting an A1c that good is a fantastic achievement. However, the more pertinent question is for how long has your diabetes been that well controlled? If you've had diabetes since 1978, a time before insulin analogues and home blood glucose testing, then I'd suggest through no fault of your own, you probably haven't had non-diabetic A1cs throughout the duration of your diabetes.

I completely agree that the attitude shown to you by your doctors is inappropriate, incorrect and unhelpful. No-one should be made to feel like a failure because they have complications, because managing diabetes is not easy. Instead, doctors should be helping us to do everything we can to minimise their impact and prevent their spread.

That means for the patients who haven't got themselves as sorted and controlled as you, pushing them to get better A1Cs. I'm not 'kicking anyone in the face' - I'm saying doctors owe it to use to encourage and help us to get non-diabetic A1Cs. Is that really such a bad thing?

I suspect the reason why many people with diabetes are so apathetic about their condition has nothing to do with people berating them and far more to do with their own doctors showing a complete lack of interest in helping them in the first place. We have a health service where doctors are still using terms like 'brittle' or 'mild' diabetes and don't even seem to understand at all the differences between T1 and T2. Coming up to the age of 30, I am now experiencing the fun of doctors assuming I must be T2 at a slightly early onset, because apparently everyone with T1 is exterminated Logan's Run style before they become an adult. If qualified professionals are so poorly informed and apathetic, what hope is there for the rest of us? The fact remains that a non-diabetic A1c is logically the best A1c for everyone with diabetes, and everyone with diabetes should be encouraged to aim for that, although not expected to meet it.
 
AJ I don't want to make inappropriate suggestions or give unwanted advice but there is a lady on another forum with gastro paresis who seems to be successfully controlling her diabetes with low carb- this is not for everyone I realise but have you read Dr Bernstein's diabetes solutiions?
He has a big section on gastroparesis. At times he is infuriating and he is extremely rigid in his approach -some of his thinking is so blinkered it is irrational, ( for example- states that chronic stress does not directly impact diabetes control- only the loss of self care resulting from this- he can prove this as studies of stress in non diabetics don;t raise bsls- doh! this is one example)
But a lower carb approach with lower insulin might just help if you don;t digest predictably- his approach is that in gastroparesis as digestion is slower, carb restriction is less severe than in a person without this complication . He also advises some exercises to aid with stomach emptying
 
Lol at the Logan's run idea...maybe the nhs doesn't think well enough of itself to believe they could sustain us that long?! 😱

I don't actually disagree with most of what you say, I just think we should be careful as I know other diabetic women who are relative diabetic infants lol who've had good HbA1cs but still had problems with retinopathy due to pregnancy. And yes, when my HbA1c was 5.8% I got the sustitute doc gasping "you MUST be going hypo ALL the time!" like I'd been terribly naughty & reckless, rather than just getting up at 3am every morning to battle the dawn phenomenom... 🙄 (my normal doc thankfully is a star...)

It is the right thing to aim for the best possible HbA1c but with due care to alloq for real life (ie not hypoing behind the wheel etc...). fun, this diabetes, eh?!
 
Hi Abi thank you that makese sense thank you very much. Through experimenting I find that if I have 30 grams of carb or less for lunch and the same for dinner then things aren't as bad but that is only sometimes and i then have the tendency to go hypo in the early hours of the morning if i have low carb at night. But I was concerned that this amount of carb was too low - and isn't always practical. I hadnt heard of the Dr Bernatein book do you have the book title please. No one has suggested low carb to me or that there are particular exercises that you can do for gastroparesis.
 
How awful for you Twitchy.
I would have been furious- it is well known as you stated that pregnancy can cause eye problems without necessarily having had terrible control.
And I really think that knowledge and encouragement are key here. Any person who lectures a person regarding poor control ought not to be rationing strips or telling them to load up with the high sugar ( AKA standard recommended diet) and have some basic knowledge of diabetes and the various treatment regimes
Heard plenty of examples of HCPs not directly involved with a persons diabetes who think it is their place to lecture
I was speaking to a colleague a few weeks ago and she asked me if i could eat anything as long as it isn't too sugary so I started talking about starchy foods and carb counting and how sometimes it is difficult to gauge the correct dose especially if there are other things going on such as stress and hormones and her eyes glazed over a little- then she asked me the same question again---
 
AJ-the book is called Dr Bernstein's Diabetes Solutions - and I think you might be able to read it online
 
LOL at Amanda - Abi gave you the title!

http://www.diabetes-book.com/


Sorry Amanda, if you didn't know, you didn't know!

Incidentally - of course if you had a closed-loop pump, all your troubles - and everyone else's - would be miraculously over LOL

And ISTR they've been talking about them practically ever since I was diagnosed!

Deus - so is Diabetes progressive, or not? I thought the Jury was still very much out on this one!

When we know that for an absolute fact, then we'll be able to attest whether eg Twitchy's retinopathy in pregnancy was caused by her previous BGs or not - but until then, I don't think I'd say anything at all along those lines! I do not believe we know enough to enable us to comment.
 
Just thought of summat else too.

For years and years my GP kept telling me I needed to try harder until eventually with an A1c of 7.8 or something I burst into tears and said I couldn't try any harder thanI was unless he could explain exactly WHAT it ws he wanted me to do.

I was suffering daily stress and had been for months if not years. My daily fluctuations in BG ranged between HI and LO on my meter. I hadn't been seen by the hospital for over 2 years; they just kept cancelling appointment after appointment anf the next offered would be 4 or 5 months hence .....

He disagreed completely with another doctor in the practice that I was depressed, just seemed 'a little anxious'. I didn't actually want to go and see him but have no option at my practice if I want to talk diabetes. I felt so ill I couldn't have possibly gone anywhere else - they might after all, be even worse than he was.

What I actually needed was to go on a carb counting course. It took over a year from that, but I got on it purely by my own efforts. And I haven't looked back since.

But anyway between 1972 and 1985 my A1c was high 7s and low 8s. Since then, always 7s until last year I got my pump and hit the dizzy lows of the 6s and started being cross examined about all the hypos I was(n't) having. Hypo is anything under 4.0 at my clinic and in my PCT. So 3.999999 and I'm hypo.

And I have no complications, other than background changes in my eyes, which I've had since mid 1980s - except the jury's out on my left big toe. Half of it is partially numb. OTOH I did drop the grill pan on the nail bed 2 years ago. Landed sharp edge first.

I think it's luck or your genes or something? God knows.
 
Deus - so is Diabetes progressive, or not? I thought the Jury was still very much out on this one!

It depends on your definition of 'progressive'. I don't think it's a case that everyone's diabetes inevitably gets worse, which is the usual definition. However, if your control hasn't been great for say, 20 years, I think you'll probably still be at risk of complications even if you get perfect A1Cs for the next 20 - it's just that you will ultimately be at a lower risk than if you didn't have great control. So the point always remains - the better your A1c, the better your outcome, although I don't think anyone can guarantee that below a certain A1C, you're complication-proof. As has been alluded to, standard deviation also seems to play a role. And as for the specific retinopathy/pregnancy issue here, I don't know enough about the relationship between the two to make a meaningful comment but I do know that retinopathy has a relationship with blood pressure, so A1C alone isn't necessarily a good predictor.

I think it's luck or your genes or something? God knows.

There's several theories around because it does seem that some people who've had poorly controlled diabetes for decades have better outcomes than some who've only had it for a couple of years.

There's three I can think of, off the top of my head. In the first instance, many those on insulin up until the 1980s used to only have maybe two or even one injection a day (I know, I'm teaching you to suck eggs here, sorry!). That could mean that the SD for such people used to be a lot lower - if a smaller SD means fewer complications, that's a good thing.

Secondly, I seem to recall reading something about vitamin B deficiency in people with diabetes - the stats broadly correlation with the percentage of calculations ie. something like 75% of people with diabetes are deficient in B vitamins, while 75% of people with diabetes have complications. Might just be a fluke or coincidence, but maybe B vitamins have some role to play - after all, they're associated with both metabolism and the nervous system, both of which are affected by diabetes.

Finally....those who've had diabetes for a long time most likely started on animal insulins. Animal insulins contain c-peptide, which is a byproduct of insulin production and is associated with the vascular system - it keeps blood vessels supple and springy. People with T1 do not produce c-peptide. Furthermore, synthetic insulins have the c-peptide removed. It's not a leap of logic to suggest that those on animal insulins might have had a better run of it despite potentially having poorer A1cs. I'm sure Sue will have a lot to say on this!

Part of the issue is that T1s are actually deficient in three compounds - insulin, c-peptide and amylin. We may also potentially be deficient in GABA as well, which influences mood and muscle tone - GAD antibodies, which are partially responsible for causing T1, also disrupt production of GABA. My theory is that T1s who replace ALL of what they're missing (other than just the insulin) are likely to enjoy better outcomes. Incidentally, amylin plays a massive role in reducing blood glucose spikes by controlling digestion, meaning you eat less AND get fewer high blood sugars. It'd probably be an ideal medication for T1s who are worried about putting on weight or getting post-prandial spikes (ie. everyone with T1). In fact it is - it's available in the States as Symlin but NICE seems to be dragging its feet over its approval and most of the doctors I've spoken to have never even heard of it.
 
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LOL - I personally think C-Pep has had an enormous part to play here, well at least, for me.

Of course I can't prove it. There was some news a year or two ago of someone actually producing it as a drug and they were going to try it on a larger group of Ds to see what happened. (They'd tried it on a small number of peeps and it had improved their BGs)

Of course, we'd have no idea whatsoever about our SD in those days would we? Hard to do when you can only boil your wee up in a test tube, and it was always bright orange when I did it, so what was the point anyway?

Not sure about Vit B; although Metformin definitely causes a B12 deficiency so if anyone's been taking it a while, it's worth having that checked out.

I was however surprised to find very recently, that I was a bit Vit D deficient. Me of all people Deus! ('Jenny, our office naturist' as a colleague introduced me once!) We spend getting on for a couple of months a year sunning ourselves, in S France usually. And we live in Coventry. Hardly the frozen north, is it?

I know someone on another forum (in US) was on Symlin, dunno if she still is, but no idea whether it makes much difference to her BGs or not. She certainly seems to have as much trouble controlling em sometimes as we do, if not more.
 
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