Nightmare diabetes appointment

[Scandichic]

Really?? My DSN says the opposite! She says spikes are nothing to get overly concerned about so long as the levels are back down to normal before u have your next meal! She even told me not to test my blood post prandial as its not important and to only test morning, night and before main meals!

Wow! Post prandial is very important. Infact fasting and post prandial are the most important. If you go onto this website it tells you all about fasting and pre and post prandial levels. Also on the diabetes.org site too which is the Nhs approved site. Sounds like someone needs a refresher course! Perhaps you could point her in the right direction

 

[Ian DP]

Having said that, the US DCCT study showed that consistent Hba1C levels for T1 diabetics over a long period of time that are < 6.5% versus those that are between 6.5% and 7% are statistically insignificant in terms of the onset of complications, so it does beg the question as to whether an extremely tight control is worthwhile?

Any chance of providing a link to this. I have googled it and can not find any reference to this.....according to Wikipedia:-
"The authors of the study featured the benefits of close control — clearly reduced eye, kidney, and nerve damage — in their conclusion. This supports the clinical value of tighter control afforded by multiple daily injections (MDI) or continuous subcutaneous insulin infusion combined with lower blood glucose targets and lower HbA1C goals. Prior to the DCCT, there simply was no medical proof that the additional burden of intensive insulin therapy over the convenience of fewer shot per day with conventional insulinotherapy was worth the tradeoff".... The Diabetes Control and Complications Trial (DCCT), was a landmark medical study with a total 1,441 participants between 1983 and 1989, followed up until 1993...... Maybe I am looking at the wrong trial......

http://en.m.wikipedia.org/wiki/Diabetes_control_and_complications_trial

 

[tim2000s]

I'll have to find it Ian, but what stood out for me is the definition of tighter control. That was maintaining a lower range and good Hba1c of 6% roughly. It also found that whilst doing so increased the risk of hypos, they did not have a long term effect.

 

[tim2000s]

http://diabetes.niddk.nih.gov/dm/pubs/control/

For a summary.

 

[AndBreathe]

Any chance of providing a link to this. I have googled it and can not find any reference to this.....according to Wikipedia:-
"The authors of the study featured the benefits of close control — clearly reduced eye, kidney, and nerve damage — in their conclusion. This supports the clinical value of tighter control afforded by multiple daily injections (MDI) or continuous subcutaneous insulin infusion combined with lower blood glucose targets and lower HbA1C goals. Prior to the DCCT, there simply was no medical proof that the additional burden of intensive insulin therapy over the convenience of fewer shot per day with conventional insulinotherapy was worth the tradeoff".... The Diabetes Control and Complications Trial (DCCT), was a landmark medical study with a total 1,441 participants between 1983 and 1989, followed up until 1993...... Maybe I am looking at the wrong trial......

http://en.m.wikipedia.org/wiki/Diabetes_control_and_complications_trial

Ian, there was a bit of discussion around this yesterdat, here: http://www.diabetes.co.uk/forum/thr...ing-blood-glucose-in-a-morning.23574/page-499

Hopefully if you scan a couple of pages, you might encounter the references.

 

[tim2000s]

There are also these libks

http://www.medscape.com/viewarticle/470738

http://m.care.diabetesjournals.org/site/misc/dcct.xhtml

I think for me the most interesting thing is that the test group had an average of 7.2% on the Hba1c, well away from the 6.05% target, demonstrating just how hard, even with a high level of hp involvement, it is to maintain a "normal" bg level as a type 1.

 

[smidge]

So, so many interesting points raised here - thank you everyone - it makes me realise how diabetes and the attitude of the diabetes 'experts' affect us all! I felt so down after yesterday's appointment and am feeling like my own little guinea pig right now, but everyone's views and opinions on this thread right now really do help!

A couple of things I think I really should comment on; a number of comments in the thread are around hypos and the level at which we have a 'true' hypo - during my difficult conversations yesterday, the consultant explained that real hypos are actually 2.2mmol and below. They say 4mmol or 3.5mmol to build in a margin of error for safety - I already knew this, but it was good to hear him say so. Obviously, there are very many reasons why we need that margin of error - some within our control and some not, so intelligence and experience need to be applied. Also, he explained that normal blood sugars are between about 3mmol and 8mmol and are normalised very quickly if they move outside of those levels - I was a little surprised at the lower end of normal, but really good to have those levels confirmed. He also told me that as a non-diabetic, but testing fairly regularly on and off out of interest, the lowest level he has seen his BG is 2.1 - make of that what you will!

I also feel I should comment on the attitude of those I saw yesterday. The dietician was young, very inexperienced, clearly well-meaning, but absolutely out of her depth in dealing with someone who knew more than she did. Her 'knowledge' was the traditional teachings - she had no alternative views to compare against. The DSN was a nurse - no real specialist knowledge and no real intelligence or insights to add to proceedings. The consultant was intelligent, knowledgeable and completely understanding of the shortcomings of the system, all of which came out during the course of the consultation. It became clear to me from what he said that he both dumbed-down his explanations for mass diabetic consumption and understood how frustrating this was for those who had the capacity and need to work at a higher level. He stuck to the NHS party line, but made it clear from the anecdotes and experiences he spoke of that he knew the party-line didn't work for me and was frustrating and that he would do what he could to work with me to achieve the outcome I wanted i.e. stability and safety within as near normal BGs as possible. We had a full and frank discussion. I answered his questions about how I feel and treat hypos - when I act on them and when I leave them and what I base my judgement on; in response to his questions, I explained to him exactly what an HbA1c is , what it tells us and what it does not tell us; I explained to him why I find high BGs far more worrying than low BGs and we had a very good discussion about micro v macro vascular damage. He spoke of his Type 1 friend who keeps his BGs far tighter than mine and how he does that - also how this friend only stuck half a day on a DAFNE course before walking out in disgust - he congratulated me on sticking a week on it even though I commented that it was a week of my life I'll never get back! He acknowledged their focus was on bringing double-figure HbA1cs down to 8.

Libre fans will be pleased to know we also discussed the Libre and he is a big fan of it, so I'm hopeful that at some time in the future, once the NHS adopts it, he might be persuaded to prescribe it.

So, a nightmare consultation, but hopefully one that might be a turning point in my diabetes care - who knows?

Smidge

 

[tim2000s]

That doesn't really sound like a nightmare to me. Rather more an intelligent and rounded discussion the likes of which I have not had in twenty years of diabetes clinics.

 

[phoenix]

The DCCT/EDIC study is ongoing, it 'celebrated ' its 30 year anniversary last year.
This is the trial website https://portal.bsc.gwu.edu/en_GB/web/edic/home
If you look on the publications tab you will see just how many papers it has generated.
Those are not by any means all of them. They have made the data available to other researchers to analyse. E Kilpatrick has done a lot of analysis (and several papers)has on glucose variability and complications.

Edit there is also a booklet on the 30 anniversary page addressed to the participants. It contains an interesting history of the trial, some of the findings and what it's looking at now
(I hadn't realised that they are now doing genotyping and seeing how genetics relates to complications.)

 

[Ian DP]

There are also these libks

http://www.medscape.com/viewarticle/470738

http://m.care.diabetesjournals.org/site/misc/dcct.xhtml

I think for me the most interesting thing is that the test group had an average of 7.2% on the Hba1c, well away from the 6.05% target, demonstrating just how hard, even with a high level of hp involvement, it is to maintain a "normal" bg level as a type 1.

Spent some time browsing.... But could not find "between 6.5% and 7% are statistically insignificant"...... Probably to technical for me to find it..... I did find a reference to only 10 patients reaching the target hba1c.

It would be good to see any other trials that compare hba1c levels to complications.... From what I have read so far, there seems little doubt that lower hba1c result in fewer complications..... Non diabetics have an hba1c between 4% and 5.9%..... Surely that is what we should all be aiming for..... Certainly what Dr Bernstein says we should be aiming for ..... And surely we should get support from the NHS to guide us towards these levels.

 

[phoenix]

Ian,
Have a look at this extrapolation from the data by E Kilpatrick who I mentioned above. If you are diagnosed tomorrow how long will it take retinopathy to progress (ie to the treatment stage) at different HbA1c levels . There is a difference between 6% and 7% , I suspect it depends on you whether you think it significantly adds to the risk . I'm not going to try to search for the statistical significance !
Credit E Kilpatrick


A second slide shows an extrapolation showing when it gets to 50 50 odds of having significant retinopathy if you are diagnosed at aged 46. You may of course be unlucky when it comes to the odds and get it long before this.
There are other risk factors to take into account (smoking, hypertension and cholesterol according to the Good Hope Hospital site)

 

[LucySW]

But of course everyone, it depends on when we actually began to have high blood sugars. Which we can't know, but ...

In my case for instance, partial night blindness and extreme sensitivity to light began 3 yrs ago. No one could explain it.

4 yrs ago, I began falling over if I ran for a bus. This in someone who used to do serious ballet. There's other physical coordination stuff too.

About 5 yrs ago I experienced much intensified memory loss and much slower mental processing. I went to get HRT because I thought it was estrogen loss affecting neural conducting (which happens).

From a year ago I found I was withdrawing socially more and more because I couldn't process what was going on, esp as I live in a Danish-language context, but even at home.

And since my teens I have got up for the loo at night. And I always binged on sugar - I knew I had an addiction to it.

Only from Feb this year did I just start to feel totally dreadful and ask for a blood test. This was when my vision got much worse - which thankfully was just my lenses, and reversed itself within two months.

I assumed this was just hitting fifty. But looking at the whole picture, the pattern changes.

SO - that's why I want normal blood sugar levels. I want to reverse what I have, and avoid any more.

 

[Ian DP]

SO - that's why I want normal blood sugar levels. I want to reverse what I have, and avoid any more.

Exactly. There is no doubt in my mind that low (normal) BG levels reverse many complications and help avoid future complications. There are a number of diabetics in their 30s who have been on deaths door with a very short life expectancy who have turned their health around, and lived into their 80s, through achieving long term normal BG levels.

Indeed, there does seem an argument that being a diabetic with *normal* long term BG levels, could actually result in a fitter, healthier and longer life than many non diabetics.

Surely, if the NHS wants to save money, by keeping us free from complications, it should be encouraging all of us to have normal BG levels.

 

[LucySW]

See here gang:

http://diabetesupdate.blogspot.dk/2014/12/accord-final-analysis-lowering-blood.html?m=1

 

[tim2000s]

Indeed, there does seem an argument that being a diabetic with *normal* long term BG levels, could actually result in a fitter, healthier and longer life than many non diabetics.

I think you are on dodgy ground with this one. You cannot compare a diabetic with *normal* long term BG levels with your average non-diabetic. The diabetic has to go to quite extreme levels to achieve this and will most likely eat, exercise and take care of themself in a way that an "average" non-diabetic wouldn't.

It would be far more appropriate to compare the diabetic with a non-diabetic that took similar care of themself.

 

[Mike d]

Exactly. There is no doubt in my mind that low (normal) BG levels reverse many complications and help avoid future complications. There are a number of diabetics in their 30s who have been on deaths door with a very short life expectancy who have turned their health around, and lived into their 80s, through achieving long term normal BG levels.

Indeed, there does seem an argument that being a diabetic with *normal* long term BG levels, could actually result in a fitter, healthier and longer life than many non diabetics.

Surely, if the NHS wants to save money, by keeping us free from complications, it should be encouraging all of us to have normal BG levels.

Bravo brother

 

[AndBreathe]

I think you are on dodgy ground with this one. You cannot compare a diabetic with *normal* long term BG levels with your average non-diabetic. The diabetic has to go to quite extreme levels to achieve this and will most likely eat, exercise and take care of themself in a way that an "average" non-diabetic wouldn't.

It would be far more appropriate to compare the diabetic with a non-diabetic that took similar care of themself.

I think it depends on the type of diabetic and how badly affected they were at diagnosis. Personally, I work to maintain my non-diabetic levels, but it's not an extreme sport by any stretch of the imagination. For fully pancreaticly challenged T1s I read a very different story. The thing about diabetes is it's such a wide portfolio of conditions all wrapped up in one natty label.

 

[phoenix]

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.

 

[tim2000s]

I think it depends on the type of diabetic and how badly affected they were at diagnosis. Personally, I work to maintain my non-diabetic levels, but it's not an extreme sport by any stretch of the imagination. For fully pancreaticly challenged T1s I read a very different story. The thing about diabetes is it's such a wide portfolio of conditions all wrapped up in one natty label.

Exactly, as a T1 it is much harder to keep to a 6% Hba1C. I have a feeling that i may well make it this time, but that won't necessarily be a good thing. I know that I've been having overnight hypos and I've been working on reducing my overnight basal. The majority of my time is spent in the 4-8mmol/l range, which equates to about a 6.5% Hba1C reading, and that has been down to the introduction of the Libre and the ability to test frequently, understand the trend and act accordingly.

I would love to have an insulin delivery system that went directly into my blood to mimic the non-diabetic graphs that we have seen on the Libre.

 

[CollieBoy]

A couple of things I think I really should comment on; a number of comments in the thread are around hypos and the level at which we have a 'true' hypo - during my difficult conversations yesterday, the consultant explained that real hypos are actually 2.2mmol and below. They say 4mmol or 3.5mmol to build in a margin of error for safety - I already knew this, but it was good to hear him say so.

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