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in need of serious retraining

R

russ621

Member
Hi all

I've just been going through poppy's posting "Can I ask".
Fergus what doses of insulin are you on, do you have insulin before your 0 carb breakfast or 10 carb lunch and tea, what back ground insulin do you use. I've been on Humalog for 18 years now, I personally find it very agressive and wouldn't dream of having a zero carb meal after taking it. I don't have a weight problem, beenn between 10stone 8 and 11 stone since I left school 30+ years ago. Diagnosed type 1 diabetic when I was 28. I was taught to carb count, but for the purpose of working out the quantity of insulin I'd need for the meal I was about to eat.
It would appear I'm getting things wrong, probably a contributing factor to my norm hba1c of around 9.
Time I think for some serious re-education, from you guys that live with this like me, all advice greatfully accepted.
Incidentally, I also have 28 units of lantus at night
Russell
 
Hi Russell,
I'd be delighted if I could help you in any way.
I'll have been T1 for 27 years next month, so we've both been at it for quite a while.

I used to have HbA1c's in the 7's and 8's which my doctor would tell me was good control, but I wasn't convinced. I decided to lose some weight and try for 'normal' blood sugars 7 years ago. It's only possible with a low carbohydrate diet I believe.
I lost 60 lbs in the first year, my weight's been stable since then and my last HbA1c was 4.6%.
The official line, basing meals around carbohydrates, is lunacy in my opinion. I now use 25% of the insulin I used to, love my food, never go hungry and have stable, normal blood sugars. It's achievable for anyone with the right advice and encouragement, which the NHS refuse to provide. Their dieticians are well meaning but very badly informed, unfortunately.
To answer your question, I'm on Humalog and Lantus. I use 3 units of Humalog at breakfast, 2 at lunch, and 7 at dinner. I have 7 or 8 units of Lantus at night, depending on factors such as diet and exercise. You are using a lot of Lantus I see, which you'd need if you eat a lot of carbohydrate. What do you eat in the course of a day? How are your blood sugars throughout the day?
I'll tell you all I can, but I'll leave it at that for now before this turns into a freaky eating manifesto!

All the best,

fergusc
 
Hi, Fergusc, I've been T1 for 9 months only so still learning. Thanks to comments by people like you, I've made a start on going low carb. HbA1c, done last week, was 6.4% and the DSN is concerned about hypo risk - she'd rather it was nearer 7.0! Certainly I'm dipping to 4.0 a fair bit but that's something I'll have to sort out whereas she would want me to raise BS levels. Time will tell but I just wanted to ask you whether you get levels down at 4.0 often? Or actual hypos or near hypos? And how many carbs, roughly, per day are you on? I'm at about 60 on average. Regards QRP
 
Hi qrp,

You've done really well to get to 6.4% after 9 months, and also to take an interest in going low carb. It's the best possible insurance against all of the horrible potential complications of this disease.

Most of us have gone through the denial stage first, until the inevitable catches up with us! Your DSN's advice to aim for 7% HbA1c is the NHS's current advice, although the ADA recently reduced theirs to 6.5%. A non-diabetics HbA1c will be around 4.5% and, in my opinion, that should be our target.

A 7% HbA1c is equivalent to an average blood sugar of 10 mmol/l, which is undoubtedly harmful over time. A non-diabetics blood sugar will range from around 3.8 to 7.8%, so again that's my target. It is impossible to achieve on anything other than a low carb diet in my opinion.

As for your questions, I get readings in the 3's from time to time, but on the other hand, rarely over 6. It's the combination of low insulin doses and very stable blood sugars that makes low carb the smart choice. I haven't had a 'hypo', where I've needed help for a couple of years. I think the low insulin doses make that far more unlikely.

At the moment I'm very low carb, just to see how it affects me. 20 to 30g of carbohydrates, and all of those from vegetables and nuts. I really enjoy the grub so I don't feel as if I'm deprived at all. They can keep their pasta and bread!

60g is good going though. Which insulins are you using, and what sorts of doses do you take?

Incidentally, the first time I meet a diabetic dietician will be the first time I listen to their advice. So there!

All the best,

fergusc
 
I have never heard that keeping lower HBA1C than 6.5% will make someone prone to becoming hypo unaware. I would be interested to read any studies or further information on that.

My understanding of it is that many medical professionals don't like to accept that a type 1 can have an hba1c that low without experiencing lots of hypos (because there might be an assumption that you are running generally quite low levels and might have more hypos than someone running slightly higher levels).

I, for one, am certainly aiming to get my hba1c below 6% if at all possible (6.7 at the moment - that was my first since diagnosis in October). As I say, I have NEVER heard tell from anyone (and I know quite a lot of people in the famous 5% club!) that it is related to hypo unawareness. More likely to be medics feeling uncomfortable about more hypos.

Personally, I would prefer to have a few more mild hypos and run consistently lower levels that be slightly high for years and risk complications!

Happy to be proved wrong and/or be educated!

LJ
 
Lady J,
You make a good point about medical professionals reluctance to recommend normal HbA1c's.

In my experience this is because they are unachievable on the diet they recommend despite the many avaiable drug therapies. There's also a general assumption that diabetics are too lazy and ill disciplined to do much other than take the drugs.
Rather than considering the advantages of a different diet, the medics choose to define damaging blood sugars as acceptable.

It's well established that permanent harm is caused by blood sugars above 7.8mmol/l, and that heart attack risk factors increase by a factor of at least 2 for each 1% above the normal HbA1c of 4.6%.
Somehow, these are stil better options than a healthy natural diet.

Nope, it makes no sense to me either!

All the best,

fergusc
 
Hi Fergus

I don't know how you manage 20-30g of carbs a day. I feel quite guilty as I have nearly 300g. Having cups of tea with skimmed milk would bring me to your total. I'm not on medication and feel ok but I start to think I'm not looking after myself as I should if I have so many carbs.

Regards Val
 
Interesting that we should be encouraged to aim for an HBA1C of 7%. I cut this from a New Zealand Diabetes Association website, but its about UK recommendations.

“Findings from the United Kingdom Prospective Diabetes Study (UKPDS) showed that the incidence of complications was significantly associated with the degree of glycaemia. For every percentage rise in the HbA1c level there is an increase in risk of:
- 21% for any diabetes-related endpoint (95% CI 17-24, P < 0.0001)
- 21% for any diabetes-related death (95% CI 15-27, P < 0.0001)
- 14% for myocardial infarction (95% CI 8-21, P < 0.0001)
- 37% for microvascular complications (95% CI 33-41, P < 0.0001)
- No threshold of HbA1c for any adverse outcome was observed. Any reduction in HbA1c is likely to reduce the risk of complications, with the lowest risk being in those with HbA1c levels in the normal range (less than 6%).”

So the medical profession wants us to maintain a level of 7% in order that we can increase chances of death by 21%, stroke by 14%, neuropathy by 37%? Personally I doubt that and, even if true, my target is closer to 6 than 7!!
 
Wey Hey, a proper good old fashioned debate!

Sarah, of course I've read Bernstein, and much else besides! I'd recommend Gary Taubes latest if you're interested, it's remarkable. Dr. B's book should be available on prescription, if you ask me.
Give the guy a break. He's 75 and been T1 for 63 of those years! He's lean, fit and runs a thriving medical practice not to mention his other committments. He could hardly do all that 'in the land of the hypo' could he? If we're up that at 75, I'd say result.

I lost my hypo awareness long before I went low carb. My best guarantee of avoiding hypos is to keep stable blood sugars therefore. That means low carb, low insulin, low risk. It's a tasty bonus that all the long term risk factors improve at the same time as you say, Dennis.

Val, I'm trying ultra-low carb at the moment, just to see how it pans out. I have to say I'm really enjoying it, although my previous self couldn't have imagined it would be possible. I've never felt less hunger and less desire for sweet or starchy stuff.

Glad to hear you've had a complication free 43 years, Sarah, with your 6-7%'s. Even you'd have to admit the odds are a whole lot better in the 4's and 5's, no? Just guessing here, but perhaps the diabetics in A&E trying to get below 5% are trying it on the sort of high carbohydrate diet that makes serious hypos a near certainty?

Anyhow, this is just the sort of discussion we should be having, don't you think?

All the best,

fergusc
 
<blockquote id="quote"><font size="1" face="Verdana, Arial, Helvetica" id="quote">quote:<hr height="1" noshade id="quote"><i>Originally posted by Dennis</i>
<br />Interesting that we should be encouraged to aim for an HBA1C of 7%. I cut this from a New Zealand Diabetes Association website, but its about UK recommendations.

“Findings from the United Kingdom Prospective Diabetes Study (UKPDS) showed that the incidence of complications was significantly associated with the degree of glycaemia. For every percentage rise in the HbA1c level there is an increase in risk of:
- 21% for any diabetes-related endpoint (95% CI 17-24, P < 0.0001)
- 21% for any diabetes-related death (95% CI 15-27, P < 0.0001)
- 14% for myocardial infarction (95% CI 8-21, P < 0.0001)
- 37% for microvascular complications (95% CI 33-41, P < 0.0001)
- No threshold of HbA1c for any adverse outcome was observed. Any reduction in HbA1c is likely to reduce the risk of complications, with the lowest risk being in those with HbA1c levels in the normal range (less than 6%).”

So the medical profession wants us to maintain a level of 7% in order that we can increase chances of death by 21%, stroke by 14%, neuropathy by 37%? Personally I doubt that and, even if true, my target is closer to 6 than 7!!
<hr height="1" noshade id="quote"></font id="quote"></blockquote id="quote">

Have you read EPIC-Norfolk?
http://www.bmj.com/cgi/content/full/322/7277/15

This bit tends to grab my attention:

"HbA1c was continuously related to subsequent all cause, cardiovascular, and ischaemic heart disease mortality through the whole population distribution, with lowest rates in those with HbA1c concentrations below 5%.

An increase of 1% in HbA1c was associated with a 28% (P<0.002) increase in risk of death independent of age, blood pressure, serum cholesterol, body mass index, and cigarette smoking habit; this effect remained (relative risk 1.46, P=0.05 adjusted for age and risk factors) after men with known diabetes, a HbA1c concentration >= 7%, or history of myocardial infarction or stroke were excluded. "

Let me repeat one bit for emphasis: <b><font color="blue">"An increase of 1% in HbA1c was associated with a 28% (P<0.002) increase in risk of death"</font id="blue"></b>


Alan, T2, Australia

Everything in Moderation - Except Laughter
 
<font color="blue">"Statistacally the benefits for avaoiding complications are minimal with an A1c below 6.5% the biggest problem is the more frequent hypos, the more hypos you have the bigger the chance of ending up hypo unaware.
Type 2's are a differnt kettle fish though if they are not on insulin they are encouraged to get a lower A1c.


------------------------
Type 1 on insulin for 43 years,No complications"</font id="blue">

Thank you Sarah, for adding that final sentence. My personal belief is that one of the most significant reasons for the terrible dietary guidelines that type 2's medical practitioners receive from our various national authorities is the failure by those authorities to differentiate between type 2 and type 1 nutrition needs related to BG management.

A similar failing leads to confusion on groups like this, when newbies read advice relevant to a different type. We have much in common - but the differences can be vital.

That's why I'm pleased to see your type in your sig. We should all do that to assist readers to assess the relevance of comments to their own situation.



Alan, T2, Australia

Everything in Moderation - Except Laughter
 
Fergusc, great reply and thanks a lot. As I said last post, it's people willing to share experiences and help others that has got me to where I'm at now. Plus books like Dr Bernstein's, which is just a bit strict to adopt 100% as yet! Great that your advice lines up with his.

I asked about hypos because I'm still honeymooning, or so the consultant thinks, and that might explain a recent out-of-nowhere hypo. The pancreas, normally inert, decides to join in the fun and dumps a load of insulin into the bloodstream!

I'm one of 6 on a carb counting and insulin adjustment course run by the local hospital. It's modelled on the Bournemouth mini-DAFNE one. They supply lunch to start the afternoon session - a pile of sandwhiches, fruit yoghurts and crisps! Luckily I had nuts and two oatcakes with me. We all have to estimate carbs for foods in photos. At debrief, I said there was not one single item that I would consume. They took it very well but mentioned a potential lack of essential nutrients. I take supplements so that was that.

The staff are sincere and enthusiastic, but all they can do is trot out the standard nutrition story. The nutritionist obviously believes it. Supposing they privately thought otherwise, would they be allowed to depart from the official line and say so, I wonder? Or condone a low-carber like me?

I use Levemir, 7u am and 2u pm, 23.00hrs. Not a lot, maybe because of honeymoon. Dose is split because, at 60 Kg, I'm under 0.4u per kg body weight. Bolus is Novorapid, usually 4u at breakfast, 3u lunch and 4 or 5u supper. Plus occasional corrections as required, of course. Around 21u total insulin per day, give or take.

Do you think you'll stay down at 20 - 30g carb per day? Has it improved control compared with, say, 60g or so? ie is it worth the extra effort?

And all the best to you, too
regards qrp
 
Have only just seen this thread. How interesting...

My last HbA1c was 6.8%, although I hadn't been diagnosed long and was still on the Novomix 30 which left my BS sky high after meals.

As those of you who have read my "blog" on this food forum will know, I am still experimenting with diet and insulin dosage and yes, having far too many hypos at the moment which is something that needs to be sorted out. But I will certainly not be happy with an HbA1c over 6 because it seems so far removed from "normal". I have another test coming up at the beginning of April, am interested to see what it will be.

I agree with the comments about dieticians. I saw mine a couple of days ago, and I have to say she is pretty open-minded about people trying out different diets and is not ramming the high carb thing down my throat. But she was telling me it's OK to be 8 before meals :?: OK I still have a lot to learn about diabetes control but I would not be happy with being 8 before meals. Seems way too high.

When I first got my meter I tested my partner a few times, partly for fun (sorry NHS, wasting resources!) but also to see what a "normal" BS was. Hilariously, he was ALWAYS 4.8 before meals. The highest reading we got from him was 7 something and that was after a bottle of full sugar coke. That showed me that 1) the body is amazing in trying to keep things balanced, but also 2) a "normal" person is pretty low on the BS front before meals.

Makes sense to me to be imitating normal blood sugars as far as possible.

Claire
 
Hi qrp,

You're doing tremendously well using such small doses of insulin!
It took me a number of years and quite a bit of trial and error before I got to where I am now. That was before I got my hands on Bernstein's book, which might well have made it a bit easier had I known about it.

I have a certain sympathy with the dieticians. They are educated a certain way and face great difficulties in recommending an approach that clearly doesn't seem to work. To recommend low-carb, however, is career suicide. A doctor here has a T1 son and is now a very vocal advocate for low carb. She has petitioned for low carb advice from dieticians but faces ostracism from her peers as a consequence.
She tells me the issue has definitely hindered her career.

That's where these forums are so invaluable. A network for support, advice and open minded discussion with other diabetics and a resource for the newly diagnosed to spare them the mistakes we've made.

Qrp, I don't suppose I'll stay at 20-30g carbs forever, but I wanted to see how I would adapt, particularly since dieticians tell us 150g is the minimum requirement to fuel the body. Wrong again!
I really do find it enjoyable however, and my blood sugars are more stable than ever. If I introduce more carbs, it will only be in the form of vegetables and nuts because I couldn't go back to the starches again. But then, the fewer carbs I eat, the less hungry I am so that in itself is powerful motivation.

The down side is that it's becoming very very dull seeing the same number on the meter time after time. I miss the frisson of not knowing where the roulette wheel is going to stop! Maybe if I fling a few more carbs in there, it'll be more exciting?

All the best,

fergusc
 
I accept that having lots of hypos may mean you lose the awareness (not having low hba1cs).

What I don't accept is that having a good (LOW) hba1c necessarily means you're going to have lots of hypos!!!

LJ
 
Absolutely right, LJ.

If only my doctors shared your clarity of thought. I have far fewer hypos now that my blood sugars are normal, but they keep trying to persuade me to get my HbA1c up to 7%. Might be time to find me a new doctor?

All the best,

fergusc
 
My last (well, actually first since dignosis in November!) was 6.7% and I sort of said "good oh, hopefully next time it'll be even lower". The consultant just sort of looked at me blankly! Maybe he either doesn't expect me to manage it or thinks he'll cross that bridge with me if it comes to it, or maybe he just looks like that normally! :)

LJ
 
Got my HBA1C result today and it was 7.5. Considering the anmount of stress and how high I have been for the last 2 months I am surprised but happy. Its 0.5 higher than I've been before but I can only concentrate on getting it back down now fingers crossed!

Karen
 
Iam T2 since 2000, recently my Tabs meds were not cutting it and the GP wanted to put me onto Insulin, and if the Byetta dosnt do it he may still.

My fascination with this thread is that although we are all diabetic there is so much difference within each type let alone between. I have only been on the site a short while but have picked up much valueable info.
From reading the various posts it would appear that many of you have gone " STAR TRECK" ie to boldly go and find out.

Maybe there is some hope after all.
 
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