Nightmare diabetes appointment

[smidge]

What do you all make of this latest on hypos and cardiovascular issues? I don't have any other details e.g. at what level they are considering hypo etc, but I thought given the discussions about normal BGs and hypos we've been having on this thread, it might be of interest.

http://www2.le.ac.uk/news/blog/2014...od-glucose-and-cardiovascular-events-revealed

Smidge

 

[smidge]

@smidge
Next time you are in conversation with that consultant, could you get him to provide a ref to those levels.
Please!

I'll try Fergus! I should be seeing him in about 3 months.

Smidge

 

[Ian DP]

You cannot compare a diabetic with *normal* long term BG levels with your average non-diabetic.

Dr Bernstein does. T1 at 12, one of, if not the, unhealthiest pupils through school, given 5years to live in his 30s. At a 50 year school reunion realised that he was one of the healthiest attending.... All through, he says, to having normal (4.6 fasting and 5.6 2hrs after eating) BG levels. Now in his 80s and still has 100s maybe 1000s of patients, including many T1s who have hba1c's in the 4s.

 

[tim2000s]

Dr Bernstein does. T1 at 12, one of, if not the, unhealthiest pupils through school, given 5years to live in his 30s. At a 50 year school reunion realised that he was one of the healthiest attending.... All through, he says, to having normal (4.6 fasting and 5.6 2hrs after eating) BG levels. Now in his 80s and still has 100s maybe 1000s of patients, including many T1s who have hba1c's in the 4s.

Right, but he's spent his life living in a way that an "average non-diabetic" doesn't, and that actually, an "average" T1 diabetic doesn't if you discuss with most diabetic consultants and the Hba1C levels they typically contend with.

 

[Ian DP]

Ian did you ever see the Channel 4 documentary the hospital? One episode focussed on young people with diabetes at the Mayday hospital in Croydon. It was heartbreaking to see an empty clinic with hardly any of these young diabetics turning up for appointments and then talking about missing injections, not testing and DKA. I can't find a copy on line to view but I did find an interview with the doctor in (unfortunately) the Daily Mail. The focus is not on the programme but it does demonstrate that it's not always easy to get people to achieve anywhere near the NHS targets.

The DCCT also tried to 'normalise' blood glucose, 7% was as close as they got. This was a vast improvement on what people came into the trial on (over 9%) and unequivocally demonstrated that using an intensive regime ie multiple injections and testing was superior to the previous methods.
The legacy of this trial is still ongoing in that those people who did get down to 7%, even though many of them had increased levels in subsequent years still have greatly reduced complication rates. Few will require dialysis, people aren't going blind and they have less calcification in their arteries. Incredibly those that were in the intensive arm have fewer bladder problems than non diabetic controls!
Given the difficulty of getting people to achieve a figure below 7% and the undeniable fact that in general people with lower HbA1cs are more prone to hypos, I don't think it is a bad target.

Hi Phoenix. No I didn't see the c4 dococumentry, sounds interesting, I will look out for a repeat showing.
I think 7% is good target with people who are at 9%. But in my short time educating myself on diabetic treatment, it seems to me that the key to a good, healthy life lies with normal BG levels. So the lower the better, and like smidge, feel that our health service should actively encourage us to get into normal BG levels, and not discourage us.

Edited to add that at diagnosis my hba1c (sep13) was 9.4%, quickly dropping to 6.3% in dec13, now at 5.2%. A year ago my gums were decaying now they are much improved. I went to my GP concerning frequent weeing, now much improved, indeed I now nearly always go through the night whereas it was often twice per night. If I ever have to getup twice in the night I know for sure my pre breakfast BG level will be above 6. If I eat anything accidentally carby at lunch time whilst eating out, I will be frequenting the loo very often, busting to go, with very little coming out. If I can keep my BG levels below 6 after lunch with a pint I now normally don't need the loo for 4 hours. Last winter I felt the cold more than ever before, especially in my toes, the nurse said I had lost any feeling in my big toe, so far this winter no where near so bad and not so far noticed cold toes....I have more hair on my bald head now than I had 6 years ago..... Still not much, but improving!..... Enough reasons there for me to want to continue with normal BG levels.

 

[Ian DP]

What do you all make of this latest on hypos and cardiovascular issues? I don't have any other details e.g. at what level they are considering hypo etc, but I thought given the discussions about normal BGs and hypos we've been having on this thread, it might be of interest.

http://www2.le.ac.uk/news/blog/2014...od-glucose-and-cardiovascular-events-revealed

Smidge

Interesting.... It does not seem to mention if there is any link between high and low hba1c's.
Could it be that a T1 with a high hba1c, has many hypos, thus maybe it is not the hypos but the high hba1c?
Indeed a question.....Do tight controlled T1s have more or less hypos than uncontrolled?

 

[noblehead]

What do you all make of this latest on hypos and cardiovascular issues? I don't have any other details e.g. at what level they are considering hypo etc, but I thought given the discussions about normal BGs and hypos we've been having on this thread, it might be of interest.

http://www2.le.ac.uk/news/blog/2014...od-glucose-and-cardiovascular-events-revealed

Smidge

More reasons to keep bg levels within sensible limits Smidge.

 

[tim2000s]

Hi Phoenix. No I didn't see the c4 dococumentry, sounds interesting, I will look out for a repeat showing.
I think 7% is good target with people who are at 9%. But in my short time educating myself on diabetic treatment, it seems to me that the key to a good, healthy life lies with normal BG levels. So the lower the better, and like smidge, feel that our health service should actively encourage us to get into normal BG levels, and not discourage us.

I am not sure that they should actively encourage a normal BG level, as even with a pump and tight control, you will have more hypos and increased risk of them and it starts to consume your life. If you choose to set that as your target, what they shouldn't do is discourage it and treat you as some sort of anomaly just because this is what you strive for. Even with pump therapy, achieving normal levels is hard work, indeed, it requires almost monastic patience and attention to detail.

As a T1 who has been T1 for 26 years and has not got complications yet, but has managed to keep Hba1Cs to a sensible level (around 7-7.5% throughout my life), actually, that's hard enough. I have another 20 years before I am your age, and by that time I would have had Diabetes for 46 years. I strive to keep my BG to a sensible level, but keeping it to a non-diabetic level? I'm sorry, but for much of the T1 population, that way increased risk of psychological illness lies.

So whilst I am happy for you to keep aiming for non-diabetic levels, indeed it is an admirable target, if the NHS was to encourage me and berate me if I missed those levels, i would be extremely fed up. It's the old walk a mile in my shoes statement, and for early onset T1, we have walked many more miles than LADA Insulin Dependents who are diagnosed at 59. While I'm not saying your point of view is wrong, I am saying it doesn't really take into account what others have to deal with, so please don't take it the wrong way.

 

[noblehead]

Right, but he's spent his life living in a way that an "average non-diabetic" doesn't, and that actually, an "average" T1 diabetic doesn't if you discuss with most diabetic consultants and the Hba1C levels they typically contend with.

I've never really understood why he wants his patients to aim for bg levels that non-diabetics don't achieve, is it any wonder that very few manage to replicate what Bernstein achieves.

 

[Ian DP]

I've never really understood why he wants his patients to aim for bg levels that non-diabetics don't achieve, is it any wonder that very few manage to replicate what Bernstein achieves.

He quotes that his target is 4.6 pre breakfast, compared to his and Jenny Ruhl belief (through a continuous glucose monitoring system) that a non diabetic norm is 4.0. Jenny Ruhl's book shows an interesting graph of 'totally normal' BG levels in non diabetics, it shows a flat line of 4.0 through the day, with rises up to 6.7 max at meal times for maybe 2hrs, quickly coming back down to 4.0.

I am not sure why Dr B's Max recommended level is 5.6..... Maybe the tighter control the less risk of hypo's.... Maybe someone else can advise further.... It may well be in his book, but I can not recall it.

 

[noblehead]

He quotes that his target is 4.6 pre breakfast, compared to his and Jenny Ruhl belief (through a continuous glucose monitoring system) that a non diabetic norm is 4.0. Jenny Ruhl's book shows an interesting graph of 'totally normal' BG levels in non diabetics, it shows a flat line of 4.0 through the day, with rises up to 6.7 max at meal times for maybe 2hrs, quickly coming back down to 4.0.

I am not sure why Dr B's Max recommended level is 5.6..... Maybe the tighter control the less risk of hypo's.... Maybe someone else can advise further.... It may well be in his book, but I can not recall it.

I'm not to sure either Ian, doesn't make any sense, anyone following that tight bg control would be on a fast track to losing their hypo awareness symptoms.

 

[phoenix]

Dr Bernstein's solution works for him and there are many anecdotes though I have actually seen very few T1s that follow his principles rigidly.
He has though never published any data apart from one paper containing extracts from case histories selected by himself, These are not good evidence .
His actual patients are motivated; they have to be but not all who go to see him decide to stay with him You don't stay with an expensive private doctor if you aren't happy. See the chapter in Cheating Destiny James Hirsch . (you can read much of the Bernstein chapter on Google books)
If you are motivated and his diet suits you then fine but don't suggest it is the best way for all of us.
Personally, I would lose my quality of life with such a diet; I couldn't even eat the amount of veg I normally do. let alone enjoy my Christmas lunch with my book club as I did today. I suspect I would become depressed and give up.
I can however get good results with a more liberal diet plus some knowledge about using insulin, together with an emphasis on exercise. I'm 62, happy and according to my latest round of blood tests, heart and arterial scans healthy. I will never have to spend as long as young onset T1s on insulin but it's approaching 10 years
I also know of a lady who was on my first course. She sticks rigidly to the way I was originally taught, with fixed amounts of carbs for each of the 3 meals ( about 180g of carbs ) and a sliding scale insulin regime. She is actually scared to deviate and is totally compliant but you know she normally has an HbA1c of 6.2% it works for her. .

Motivation or compliance are really important .and really hard to instil .
With young T1s, the future is a whole lifetime away.
Many miss insulin , fabricate readings, even using methods like using control solution to record a reading on a meter. On top of that insulin needs can rocket during puberty so even when they do the 'right' thing it doesn't always work.

I think it must be best to try to help them learn to be able to manage their BGs to 'good enough' levels, whilst still being able to go out and enjoy themselves with their friends.
(Ian also look at a much larger and later study of 'normal glucose levels using CGM http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2892065/ )

 

[LucySW]

Dr B's argument is that 6g - 12 - 12 carbs a day, plus consistent protein, say 20g - 30 - 30, will make both BS rises and insulin doses consistent, and that this consistency prevents both spikes and hypos.

He argues that low carb levels need lower insulin doses, so you lose the random factor in how much insulin is actually absorbed. This can differ by 30-40 % each time, he says. His argument is really that it's the imprecision of carb intake and insulin absorption that's the problem, especially with large doses and high carbs. In his view, this imprecision is what causes both hypos and spikes. Hence the importance of a narrow range of consistent carb intake and insulin doses.

That's also why he splits large insulin doses up in different injection sites (same needle different place), max per injection 7 u.

There you are - that's him in a nutshell. Tough it is, and possible it may not be, but I'm not aware that his logic has been faulted.

And yes, of course please forgive over-keen middle-aged LADAs (of whom I am one). But we have a lot to gain. (And it's the LADA page ... )

PS I hasten to add that usually I can't manage the Dr B regime. I'm unusually motivated at the moment because I'm not happy with my BS levels.

 

[LucySW]

Phoenix, yes, yes, yes. To everything you said. Couldn't be said better, methinks.

And you're right about Dr B and evidence. It's the elephant in the room.

*And* I'll say that in my opinion the Dr B method is very simplistic, even simple-minded. But it's just a method, a practical approach to treatment. Which is, I guess, why he's never gone down the road to making it scientifically respectable. But those who try it may find it useful ...

 

[smidge]

I really don't mind other diabetics aiming for higher levels as long as they have the full facts and are not misled into believing an HbA1c of 7 for example has the same risks as one of 6. Or that the spikes I'm experiencing are safe because the HbA1c is good. We all have to look at the risks we are prepared to take, but we need the facts upon which to base those decisions. I hate it when I am seen as strange in some way for deciding to try to normalise my BG as far as I can. I also find it really difficult to understand what many fellow diabetics have against other people aiming low - no-one is forcing anyone else to aim low, so why is it such a problem for some people? Do people find it threatening? If so, there's no need. I am happy for anyone who reaches and sustains a level at which they are comfortable with the risks.

Smidge

 

[donnellysdogs]

I really don't mind other diabetics aiming for higher levels as long as they have the full facts and are not misled into believing an HbA1c of 7 for example has the same risks as one of 6. Or that the spikes I'm experiencing are safe because the HbA1c is good. We all have to look at the risks we are prepared to take, but we need the facts upon which to base those decisions. I hate it when I am seen as strange in some way for deciding to try to normalise my BG as far as I can. I also find it really difficult to understand what many fellow diabetics have against other people aiming low - no-one is forcing anyone else to aim low, so why is it such a problem for some people? Do people find it threatening? If so, there's no need. I am happy for anyone who reaches and sustains a level at which they are comfortable with the risks.

Smidge

My difficulty with low hba1c's is because I have experiienced the wrath of a consultant literally shouting at me in Wales that I deserved to lose my licence and I would lise it for at least a year.
I didn't lose it, but my consultants prior were right about the risks of lower hba1c's with me and it caused me absolute hell.

Others may never experience anything similar, but just having that **** awful experience I would never wish it upon anybody else.

I have never forgotten that experience and my english consultants still keep warning me and reminding me constantly of any lows risking my licence and livelihood....

When my hospital was seeing so many people lising their licences from hypo's then I know I am not the only person and won't be the last....

 

[Brunneria]

Bernstein recommends precise control of blood glucose - that prevents excessive lows as well as highs.

I think people often misunderstand that, and default to a 'low hba1cs = hypos' argument.
In fact, Bernstein is presenting a way to stabilise BG within a narrow range - which avoids hypos and hypers.

I think this is the source of much of the misunderstandings.

 

[donnellysdogs]

I definitely have more lows and more serious ones when my hba1c's drop.. And yet my diet has pretty much been the same for all 30 years of my diabetic life.
Now my standard deviation runs between 1.8 and 2.5. My levels rarely go above 7 (normally only pump failure/occlusion etc) but running on lower levels consistently you definitely have to be more aware of the need of alterations for extra exercise, any driving, stress. Illness etc...especially if on jabs... My pump enables me to run levels that are more even,better than mdi ever was.

I go by standard deviation rather than aiming for bloods at 5.5. If my standard deviation shows between 1.8 and 2.5 then my hypo levels are less frequent.

 

[douglas99]

Dr Bernstein's solution works for him and there are many anecdotes though I have actually seen very few T1s that follow his principles rigidly.
He has though never published any data apart from one paper containing extracts from case histories selected by himself, These are not good evidence .
His actual patients are motivated; they have to be but not all who go to see him decide to stay with him You don't stay with an expensive private doctor if you aren't happy. See the chapter in Cheating Destiny James Hirsch . (you can read much of the Bernstein chapter on Google books)
If you are motivated and his diet suits you then fine but don't suggest it is the best way for all of us.
Personally, I would lose my quality of life with such a diet; I couldn't even eat the amount of veg I normally do. let alone enjoy my Christmas lunch with my book club as I did today. I suspect I would become depressed and give up.
I can however get good results with a more liberal diet plus some knowledge about using insulin, together with an emphasis on exercise. I'm 62, happy and according to my latest round of blood tests, heart and arterial scans healthy. I will never have to spend as long as young onset T1s on insulin but it's approaching 10 years
I also know of a lady who was on my first course. She sticks rigidly to the way I was originally taught, with fixed amounts of carbs for each of the 3 meals ( about 180g of carbs ) and a sliding scale insulin regime. She is actually scared to deviate and is totally compliant but you know she normally has an HbA1c of 6.2% it works for her. .
Motivation or compliance are really important .and really hard to instil .
With young T1s, the future is a whole lifetime away.
Many miss insulin , fabricate readings, even using methods like using control solution to record a reading on a meter. On top of that insulin needs can rocket during puberty so even when they do the 'right' thing it doesn't always work.

I think it must be best to try to help them learn to be able to manage their BGs to 'good enough' levels, whilst still being able to go out and enjoy themselves with their friends.
(Ian also look at a much larger and later study of 'normal glucose levels using CGM http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2892065/ )

One of my work colleagues, was a T1, diagnosed in his teens. He retired at 60, many years ago.
He had his lunch box, with a very carefully prepared amount of sandwiches and cake.
Carbs, set amount, fixed amount of insulin, very old school. No deviations at all from routine.
He's still fine.
Probably in his late 70's now.

 

[tim2000s]

The question that someone raised earlier is an interesting one. It was whether tighter control led to more hypos.

I think there are a couple of ways to look at it. One is that a lower Hba1c number statistically would suggest more hypos.
The second is that a tighter level of control doesn't have to, however it is a tighter level of control at all levels and therefore suggests significant lifestyle impacts.