What Are The Other 6.5% Type 1 Diabetics Doing Right?

I'm always very reticent to post on Type 1 Diabetes. The mechanics of carb counting/insulin injection and hypo avoidance seem much more complicated than my simple Type 2 diabetes lifestyle regime (50 carbs per day max). However, the dire complication/mortality statistics and constant negativity from many Type 1 individuals on a forum with declining (some would say zero) credibility requires some comment.

From the 2011-2012 National Diabetes Audit Report 1:

http://www.hscic.gov.uk/catalogue/PUB12421/nati-diab-audi-11-12-care-proc-rep.pdf

93.5% of Type 1 diabetics have an HbA1C > 48mmol/mol. [Note however, there are several Type 1 members of this forum with an HbA1C <= 48 mmol/mol].

From the 2011-2012 National Diabetes Audit Report 2:

http://www.hscic.gov.uk/catalogue/PUB12738/nati-diab-audi-11-12-mort-comp-rep.pdf

Between 1 January 2012 and 31 December 2012 Type 1 diabetics were 139% more likely to die than would be expected if they had the same mortality rates as the general population in England and Wales.

Now I am NOT claiming causality or even association (mortality is likely to have a more nuanced time-lagged association with out-of control HbA1C) but it should give individuals and the NHS pause to reflect.

Hi John

As we know the NHS is making no progress whatsoever in the fight against diabetes. Until the NHS,ADA,DUK and BDA change their lamentable dietary information, the situation can only get worse.

Eddie

Before I found low carb I ate what I wanted carb counting and correcting as needed.
I can't ever remember having a HbA1c below 7. I have no complications (how after 20 years eating like that? Pure good luck.)

Went low carb and was hitting 6.5%. Went on pump because of dawn phenomenon - really went for low carb and I hit 5.9% last test!
Told to eat more carbs as I was still losing weight. I eat more nuts, avocados and such. (14st to 8st 11lb).

Never felt fitter. Rarely need to correct, highs if any are in the 8s. Lows are in the 3s. Both easy to sort out.
Before I would correct in the 14s. I would also waked up drenched in sweat with hypos in the low 2s and once 1.6 on my meter when I looked afterwards - I actually sorted that one out myself and I don't remember.

The peace of mind gained from this is amazing after so long yoyoing. And it's because of websites like the lowcarb (cheers Eddie and Jan).
I had a consultant ask me why I tested so much? Let you sugars run then correct.
So run high for upto 4/5 hours, feel like crap then correct? What? Oh bless. I've been told numbers like mine are very unusual on someone who uses a pump. Actually now I know from strangers about low carbing why wouldn't I use it to prevent complications.
Sometimes think they advise to the lowest common denominator - outright patronising.

Rant over sorry.

"Actually now I know from strangers about low carbing why wouldn't I use it to prevent complications."

I truly believe almost every diabetic can run safe non diabetic numbers and this chronic disease does not have to progress to grim complications. It is nothing short of completely scandalous and bordering on criminal, the lamentable statistics we see year after year are trotted out by the NHS with no sense of shame. Every Doctor must have at least one well controlled diabetic on their books, and knows how they are achieving good consistent numbers, how they keep quiet, and dish out useless information year after year is a mystery to me.

Eddie

eddie1 wrote:"Actually now I know from strangers about low carbing why wouldn't I use it to prevent complications."

I truly believe almost every diabetic can run safe non diabetic numbers and this chronic disease does not have to progress to grim complications. It is nothing short of completely scandalous and bordering on criminal, the lamentable statistics we see year after year are trotted out by the NHS with no sense of shame. Every Doctor must have at least one well controlled diabetic on their books, and knows how they are achieving good consistent numbers, how they keep quiet, and dish out useless information year after year is a mystery to me.

Eddie

Yes Eddie, my doc said that he has over 300 diabetic patients and my HbA1c's are the best. I told him I use LCHF to achieve this and he said 'Good, whatever works for you'. Well if others knew about LCHF it would work for them too.

zand wrote:

eddie1 wrote:"Actually now I know from strangers about low carbing why wouldn't I use it to prevent complications."

I truly believe almost every diabetic can run safe non diabetic numbers and this chronic disease does not have to progress to grim complications. It is nothing short of completely scandalous and bordering on criminal, the lamentable statistics we see year after year are trotted out by the NHS with no sense of shame. Every Doctor must have at least one well controlled diabetic on their books, and knows how they are achieving good consistent numbers, how they keep quiet, and dish out useless information year after year is a mystery to me.

Eddie

Yes Eddie, my doc said that he has over 300 diabetic patients and my HbA1c's are the best.  I told him I use LCHF to achieve this and he said 'Good, whatever works for you'.  Well if others knew about LCHF it would work for them too.

"whatever works for you" I wonder how many on the forum have heard that ? I certainly did. As if we are from the planet Zog and what works for us won't work for others.

Eddie

I'm a T2 but from what I've seen on forums the biggest obstacle for T1 LowCarbers appears to be their HCPs who don't think it possible to get a low A1c without suffering a lot of hypo's when in fact the opposite is true.

Graham

Please excuse a non diabetic from butting in here .....but have you also read Lisa's post about her Type 1 diabetic son on the recent "HbA1c 5.3%" topic ?

Power to all you low carb high fat diabetics, well done  

Please keep talking about your success stories.

All the best Jan

I agree with what's already been said about poor dietary advice, lack of up to date information indeed total lack of information . I'm shocked and horrified on another forum by people who post asking for help when basically they have been handed insulin pens and a meter and more or less told to work it out by themselves Or else pop up asking for advice when they have become overweight , have a high HbA1c despite injecting what seems to me to be huge amounts of insulin because they have been told to eat what they like and bolus accordingly.

There seems to be very little advice given on ratios , basal testing, trying different insulins and none at all on what seems like common sense : carbs raise BG, therefore more insulin needed. Insulin plus intake of carbs equals weight gain and BG instability, therefore more insulin needed and on the cycle goes .

To add to their misery, they are then castigated by the same HCP's for poor control and weight gain when they have probably been following their advice to the letter and are bewildered and terrified by the threat of complications so become depressed and suffer Burnout . And there's bugger all support given there, for the most part. It's a scandal . Then, there are what seems to be censorial statistics given like the one above which sounds very like an implication of non compliance from the diabetics to the current advice given Which doesn't bloody work anyway    

Next month I attend a DAFNE course ( which I had to fight to get on and travel an unfeasible distance to go to ) and so met with the DSN  for pre course bloods and a chat. She's actually pretty clued up and though has to adhere to the party line, also dryly and cleverly inserts her own beliefs in to what she is saying   She warned me that my face is a rather expressive one, and not to let my jaw drop too much or too often at what others in the group were likely to say what they were eating as part of a " normal diet " , the " normal diet " that had been advised when they were diagnosed . She said she is careful to find out what an individual considers to be " normal " at the outset and make suggestions accordingly  

So that course should be interesting ...

Signy

Sorry, sorry, I didn't answer the original question

I believe that some people actually do achieve a reasonable HbA1c following current advice because their lifestyle supports it, eg are fairly active and their diet is not full on carbs to begin with. It's possible though that their figures are fairly brittle, with a slant towards higher than 48 on occasion and unlikely to go much lower than that. It seems to me that many who achieve a lower figure do question the logic of the advice they are given and have the confidence to research and find ways that work for them personally.  Quite a few long term diagnosed Type 1's have very good Hb's because carb restriction was the advice given at the time of diagnosis, and they have seen no reason to change . If it ain't broke, don't fix it !

Unfortunately the NHS like everything else has fashions that come and go, often based on rather iffy studies. I would be interested in a comparison study of those diagnosed before the advent of the "Eatwell " plate and " eat what you like - like what you eat " and those who who were diagnosed after. And what happened to the the earlier ones if they switched to the "new way of thinking "

Signy

Great post Signy

Don't let me put you off the DAFNE course but this is the achievement they boast about.

Conclusions DAFNE structured education is associated with an improvement in glycaemic control at 1 year, and there remains a persistent and clinically relevant reduction in HbA1c of 3 mmol/mol (0.3%) after 7 years. The improvement in glycaemic control after DAFNE is achieved without excess weight gain.” [My italics]

So with the best educational provision currently available over a 7 year period a reduction in HbA1c of 0.3% to an average of 8.3% was achieved and thought to be clinically relevant! The tragedy of accepting average HbA1c in the region of 8.3%  is illustrated in the post:

More here http://thelowcarbdiabetic.blogspot.co.uk/2014/03/efficacy-or-otherwise-of-dafne.html

Eddie

Thanks for that Eddie

I must say that the stats given for lowered HbA1c are stunningly underwhelming I personally would consider the "improved " levels as being way too high and indicative of still having poor control . Granted, any improvement has to be good, but it's not good enough and I would have thought would lead to complacency if that's considered a good result

Currently my Hb's 43, and my weight is the lower end of "normal " whatever the hell normal is !
I'm beginning to twig to some of the veiled references made by the DSN now

I have no clue what the course actually covers, and if it does cover ratios for individuals instead of what seems to be the standard advice of 1 unit per 10g carb . I think if it does cover at least the basics of basal bolus it's a huge improvement on the " Go forth thou, and be diabetic " lack of information for the newly diagnosed and hopefully a starting point for people's own fine tuning based on their knowledge of themselves . If they don't consider the white coats advice as being the only way forward

I admit my reason for going is that I'm as curious as a cat and want to know what's on the other side of a door If I want to comment on DAFNE , I think I should at least have experienced it and made my own observations. Trying to find out what is in the curriculum is difficult , I've had way more success at finding out the secrets of so called secret societies on the web than simple information of the DAFNE programme

Signy

I would love to go on a DAFNE course, I reckon I would last an hour before being forcibly removed from the premises.

Keep us informed if you don't get chucked out yourself.

Eddie

eddie1 wrote:I would love to go on a DAFNE course, I reckon I would last an hour before being forcibly removed from the premises.

Keep us informed if you don't get chucked out yourself.

Eddie

Eddie on the DAFNE course?? I'd LOVE to be a fly-on-the-wall at that session!

"Get them carbs down ya..."

Ah well, I am a veteran at keeping quiet in the face of ridiculous NHS dogma . If it gets too much I am quietly sarcastic , usually so the person it's aimed at is unsure that they have been sarked at it's kept me sane and amused through many a meeting

Signy

Take the course for what it is. You'll certainly learn a few bits and pieces and it's good to talk freely with other diabetics and see how they manage. Yes, a lot of the dietary advice isn't great but the basics of dose adjustment and carb counting is a good tool.

I'm a type-1 diabetic (45 years old, had it for 7 years.) My A1C is 6.5 but my until my last test had been 5.9 and 6.1. I test about 10x / day, am active and, until recently, ate about 100 - 120gms of carbs /day.

This weekend I started LCHF, as I'm not satisfied with the likelly health outcome of a 6.5 A1C. So right now I'm targeting 50g / day and making up calories in fat. I'm very tall and thin (6'2, 145 lbs) so keeping weight on is a big concern, but we'll see how it goes.

Jas.

I know a number of type one diabetics holding HbA1c in the fours and fives. All of them are using around 30 grams of carb per day. More fat rather than more protein is the way to go, with your height and weight clearly you cannot afford to lose weight. I expect you have checked out Dr. Richard Bernstein he has used a low carb (30 grams per day) diet for decades. He has a system he calls the power of small numbers, the less the carb the less the insulin, the less the margin for error. All that being said you are holding numbers very few type ones ever achieve so congratulations. I guess for you the answer is a strict food diary and lots of small adjustments and lots of testing.

All the best Eddie

It's bizarre isn't it that a failure rate of 93.5% seems not to cause much head scratching. In the industry I work in everyone associated with results like that would be fired almost immediately.

Yet, we will probably see an increase in the 'best practice HbA1c' to an HbA1c of 7.0 or above (in old money) because as you can see above it's unrealistic for diabetics to achieve better than that without constant hypos. It can't have anything to do with the advice and management tools given to diabetics can it? No, no, no. It's just a fact of life.

My consultant was muttering about me doing a DAFNE course but it just seems to take so long and I don't have the time nor the inclination to sit with people being shown plastic toy broccoli to help guide them towards a healthy diet and having to restrain myself from attacking dietitians.

Perhaps I'm wrong; it would open the way to get a pump which I like the sound of as it's a shiny new thing and I like those.

Signy - I like the sound of your approach; sarcasm is a mighty tool.

Dillinger

Unfortunately Dillinger, if you want the shiny stuff, you need to play with the plastic vegetables :-)

mo1905 wrote:Unfortunately Dillinger, if you want the shiny stuff, you need to play with the plastic vegetables :-)

"If you want the shiny stuff, you need to play with the plastic vegetables." Didn't Churchill say that?

Dillinger wrote:

mo1905 wrote:Unfortunately Dillinger, if you want the shiny stuff, you need to play with the plastic vegetables :-)

"If you want the shiny stuff, you need to play with the plastic vegetables." Didn't Churchill say that?

I thought it was Michael Jackson ??

jlecount wrote:I'm a type-1 diabetic (45 years old, had it for 7 years.)  My A1C is 6.5 but my until my last test had been 5.9 and 6.1.   I test about 10x / day, am active and, until recently, ate about 100 - 120gms of carbs /day.

This weekend I started LCHF, as I'm not satisfied with the likelly health outcome of a 6.5 A1C.   So right now I'm targeting 50g / day and making up calories in fat.  I'm very tall and thin (6'2, 145 lbs) so keeping weight on is a big concern, but we'll see how it goes.

Jas.

Hi Jas

Sorry this welcome from me is a little late,because I know you've posted here and on other threads, but nevertheless a warm welcome from me  

As you'll see from my signature I am not a diabetic but live the LCHF lifestyle.

Look forward to seeing you around the forum

All the best Jan

Mo - I saw a headline in The Times yesterday saying "Prince to stop advising on the sale of arms to the Middle East." I though good; he should just stick to making music. Do what you know!

Dillinger wrote:Mo - I saw a headline in The Times yesterday saying "Prince to stop advising on the sale of arms to the Middle East." I though good; he should just stick to making music. Do what you know!

Love it ! He should stick to car sales rather than arms sales !