Who has lost the plot? - Is it me ??

[Bluenosesol]

Folks,

I recently attended the X-pert course. Whilst doing that, I had the opportunity to discuss with other diabetics their personal knowledge and attitudes. Their responses were naturally formed by their relationships with various NHS diabetes professionals. I was amazed to hear people bragging about their high BG levels and how they justified large amounts of refined carbs and sugar as part of their "diet". Many believed that exercise was not important as the medication available today was so good at reducing BG.
This week, I attended a support group meeting and was speaking to a chap of considerable intelligence. When I asked him how he was getting on, he had been advised to take it easy and to try to get his BG up a bit, as at 4's and 5's, he was in danger of lapsing into hypo's!!. This person is on Metformin!!. When I told him that such advice was ridiculous and that he had negligible chance of a hypo, he turned on me and made a sarcastic comment about how he supposed that I was better informed than someone who had dedicated their life to understanding diabetes!. The group appears to be full of diabetes experts who are unwittingly harming themselves.
Following the advice of this forum, I have achieved in 3 months what your anecdotally average, NHS sole-reliant, diabetic hasnt achieved in several years!!....
There are some great initiatives currently taking place in the NHS to provide improved care for diabetics, however, the system still accommodates inappropriate and harmful advice, areas of non participation, arrogant, pompous and behind the times GP's and an attitude that confused patients get the advice and can take it or leave it!.
When I meet with fellow diabetics at such events, it often feels like I am partaking in a sketch from Monty Python's Flying Circus. The prevailing logic just does not make any sense to me.
So who has lost the plot? - Do the NHS provide a life changing service for diabetics which maximise our chances of avoiding serious complications and death?...and if so, is it the general diabetic public who simply fail to take it all on board?...
We are spending millions of pounds on research to find new answers, but for many, the answers are already there..
For me, to use a corny phrase - Its not rocket science!.

(PS I am not refering to those of us who have genuine multi faceted and complex issues, I am really referring to gaining control of BG using simple rules of self management along with NHS mangement of follow up tests abd examinations).

All the best -Steve.

 

[Fujifilm]

So what makes you a leading authourity on Diabetes? (only joking)

The care of diabetes and thoughts have changed so much over the years. If it was not for the NHS many of us would not be here, many of our complications would go undetected.

Having spent a month or so reading this forum, I am probably more confused about Diabetes than I have been over the last 20 years.

It may well not be rocket science, but what I got told 20 years ago is different to what I got told ten years ago which is different to what I was told five years ago. Information is freely available now, but how do you decide which information is right?

I keep reading all this info on low carbs ????????!!!!!!!! I have never heard of that, if anything the advice I was given was opposite to that. So who do I believe, my specialist Diabetic doctor who is trained in these matters or a bunch of people with diabetes using low carb diets and getting good results. Could it be my GP is not upto date on current trends or does he have more knowledge and knows whats best?

It would be so simple if we were all the same, ideally we would all like a normal BG but we are all individuals, all been given information relating to our diabetes all trying to do the best we can with the info we have.

 

[catherinecherub]

Well said Fujifilm.

We can only try to be an expert in controlling our own diabetes and it is an arrogant view to think that we know all the answers.

I rely on the diabetic team I have to help me through the management of my condition and my commitment is paramount in obtaining good results. I think the confusion here is that some diabetics don't want to change their eating habits and yet still want to have good control. Even with excess medication this is rarely achievable.

If my team told me to try and raise my levels then I would want to know why. If their explanation met with my approval then I would do what was asked of me.

There have been people who post on this forum who have experienced very low blood sugars and they have been taking metformin.

Our uniqueness is what it is all about and no one can know the outcome of advising someone else as to what to do. Leave it to the real experts. If their advice does not meet with your approval then question them about it and if a compromise cannot be reached then it is time to move on and get a second opinion.

I am a Type 2 with an HBA1c of 5.1 and I have obtained this level for at least the last two and a half years.

 

[sugarless sue]

For me, to use a corny phrase - Its not rocket science!.

No, it is not rocket science! Carbohydrate changes to glucose , and so does some of the protein that we eat.

Diabetics have a problem metabolising glucose. Solution ---reduce the glucose input. Where it gets complicated is the question , ' by how much do you reduce the carbs and thereby the glucose ? '

This is up to every individual diabetic to decide and ,by testing,find out. Some find that a small reduction keeps them stable, others have to reduce more.

By what ever means, medication, different diets , etc. Our main aim is to control our diabetes and live a long and healthy life.

 

[Bluenosesol]

Good responses Fuji and Catherine, to date I am happy with where I am with my own management and if it were not for genuine altruism on my own behalf towards my fellows, then I could simply go away and manage myself. If that is arrogance then so be it.
I am not saying that my methods work for me, so they should work for everyone else. I am not saying that I would have achieved my results without the excellence provided by the NHS. What I am saying is that come what may, the best practices within the NHS are at best inconsistent and as a result an incredibly large proportion of our diabetics are suffering the consequences.
My dismay results from anecdotal observations of those I have met who do not seem to appreciate the seriousness of manageing their disease and their blind faith in whatever support sytems they utilise regardless of the evidence of their own condition.
Simple rules like, more activity, less weight, carbs = BG and the recommended targets for lipid profiles, HBA1C, BG levels and frequency of professional intervention apply in general to all of us.
A lifetime expert in gravitational theory is but a chocolate teapot if his advice is to go jump off a cliff.

Steve.

 

[catherinecherub]

Hi Bluenosesol,

I too am happy to make suggestions and can advise people as to what is working for me. What I cannot do is to tell those same people that it will work for them. That is the bit that worries me. No way can I be called an expert.

Healthcare is very patchy and there are good and bad endocrinologists and G.P.'s. That is life I'm afraid. There are good and bad plumbers, chefs, car mechanics, etc..............

Catherine.

 

[hanadr]

I attend several diabetes "events" each year and I'm amazed at the talk I hear. I met one woman, who had bee told recently by her DSN that she'd need insulin as her control had "gone". I asked about her diet. "Plenty of complex carbs" so I suggested she might regain her control if she reduced them a bit. She was so scared of insulin and injecting, that she listened. A bit later she came back to tell me someone else had told her she MUST eat the carbs. I then asked her what good they'd done her.
At least one of the Diabetes UK folks knows I'm on a mission and makes a point of inviting me to these events. I'm going to London next week again.
Although I've chosen VERY reduced carbs for myself, I feel any reduction is good. If only as part of an "eat sparingly" pattern. Certainly I haven't come across any low Hba1cs in people who don't cut in some way.
Hana

 

[Bluenosesol]

Catherine,

I self diagnosed despite having tests for many years for gout, none of the NHS experts dealing with my condition realised despite their expertise that my 18 stone weight (then), associated with my gout condition made me an ideal candidate for type 2 diabetes. Had they done so, (It would have required a simple additional tick on my regular blood test request form), I would not be a member of this forum today. So thats an anecdotal observation to be aware of academic certificates as a measure of true expertise.

That said, 19 weeks of post diagnosis personal experience do not make me an expert either.
My initial advice was to cut out sweets cakes and pastries and eat lots of starchy carbs and not to test my blood. I then joined this forum and realised that my attitude to management of my condition and the limitations of the advice on offer were imperilling my recovery. When I had a trig reading of 7.7, my expert did not even discuss this with me or identify an issue. It was by reading the web that I realised that any trigs over 2 required immediate intervention. They are now down to 1. My HBA1C is 5.8 and continuing to fall and I have lost 50 pounds on a lo-carb diet. These methods have worked for me and I am NOT saying they will work for you.

What I am saying, is that having blind faith in people that tell you that T2 is a mild form of diabetes so cut back on sugar and come back in 6 months (I have more anecdotes), that eating bagfuls of low sugar diabetic sweets (95% carbs!!) and believeing that exercise is not necessary even when you are perfectly capable of doing so are evidence that despite the best efforts of the NHS and DUK the message is not getting through.

To suggest that certain people who live in certain post codes will have to die with the consequences as that is the nature of health care in the UK is, sorry to say, totally unacceptable to me!.
Steve

 

[Dillinger]

Hello,

Well, we hear the 'we are all different' line on this forum a lot and on some levels it's true, but fundamentally we all have the same biochemical processes running in our bodies and if we are talking about key metabolic changes such as severely reducing carbohydrate then the effects will be the same for all of us within a pretty tight spectrum.

Type 2's may be able to get away with less of a reduction as they still have some pancreatic function, but I really think that all diabetics could improve their health markedly by reducing carbohydrates.

The NHS is a big institution and big institutions don't change their minds quickly or easily; it is understandable that there will be resistance to a position that disregards the current thinking on diabetes management; but try it for yourself and see the benefits. Then if you are worried about the long term consequences of this approach being harmful to us do some digging and read up this; you won't find any.

Steve has got the plot!

 

[wallycorker]

Personally, I can relate to what Steve says in opening this thread. I find the things that I hear - sometimes at quite informed meetings - absolutely astonishing!

Moreover, I'm with Hana and campaigning wherever I can to get things changed for the better.

I keep asking the health authorities why they keep telling Type 2s "not to test" and "eat plenty of starchy carbohydrate". I never have received a meaningful response! For example the Head Dietitian for my PCT defended her position only yesterday by telling me in a open and informed PCT meeting at the local hospital that it was "the national guidelines". Almost as though she might agree with what I was saying but because it had come from above then that is the message that she has to push. Also, lower down the scale, when I ask the same question of dietitians they tend to answer by saying it's what they've "been trained to say". Absolutely astonishing!

By the way, as I've said before, I'm not what many would call a low-carber - in fact, I couldn't tell you how much I eat because I've never added it up. However, what I do know is that since I started testing (against the advice of my GP) my meter quite clearly tells me the damage that many carbohydrates (especially refined starchy carbohydrates such as cereals, bread, potatoes, rice and pasta) do in elevating my blood glucose to harmful levels unless I limit my intake. Most other people on this forum know the same from their own testing. I do recognise that the almost total normalisation of my blood glucose levels over the last twelve months has come about through the management of my carbohydrate intake.

I find the whole situation especially as it affects Type 2s such as me to be quite nightmarish! I keep expecting to wake up and find out that it's all been a bad dream! However, I know that isn't going to happen!

I agree with what Dillinger has said - "Steve has got the plot!".

John

 

[Fujifilm]

The NHS is a big institution and big institutions don't change their minds quickly or easily; it is understandable that there will be resistance to a position that disregards the current thinking on diabetes management; but try it for yourself and see the benefits. Then if you are worried about the long term consequences of this approach being harmful to us do some digging and read up this; you won't find any.

There is a problem with that statement. You say "Then if you are worried about the long term consequences of this approach being harmful to us do some digging and read up this; you won't find any."

Thats is not the reality, you get given advice, then you do your digging and research and find that some say one thing some say another who do you believe? I agree that big institutions do not like change, but thats also true for individuals, more so when your health is involved, twenty years ago I was told, this, this, this. Now I am being told that was wrong, you now need to do this, this, this. But twenty years ago I had better control than I have now. :? I remember being told it did not matter if my BG ran high, because it was better to run a consistent BG. than be up and down.

So to say the long term approach is not harmful because you can't find any evidence is not right. Todays thinking may well be that low carb diet (for example) is the thing to do, who knows what next years thinking might be, Maybe eat as much chocolate as possible, OK so that maybe wishful thinking. :lol: :lol:

Not so long ago I was being told to take half an aspirin everyday because research shows it would be beneficial, now I am told it may more harm than good. The person who gave me the advice was qualified to do so, I have to trust what he / she tells me.

Its all trial and error, whats right today may not be right tomorrow. We can only do what we can with the knowledge we have, manage our own situations the best we can, what works for one may not work for another. If only it did. :mrgreen:

Wallycorker (John) You obviousley challenge what you are told, and ask questions and rightly so, but how many people just accept what they are told? and are they wrong for trusting the proffessional? Nobody has the answers to everything, oh I correct myself, my wife does. :lol: :lol:

 

[wallycorker]

...................Wallycorker (John) You obviousley challenge what you are told, and ask questions and rightly so, but how many people just accept what they are told? and are they wrong for trusting the proffessional? Nobody has the answers to everything, oh I correct myself, my wife does. :lol: :lol:

Hi Fujifilm,

Questioning and problem solving is one thing because that I suppose is part of what I was trained to do with a scientific /engineering background. However, challenging medical advice is something very, very new to me. That only came because when I started testing and logging my results I could see that things were happening not like I had been told they would.

For example, almost everyone told me - especially my GP - that I needed to lose weight and that might help my diabetic condition. However, my improvement in blood glucose levels came about almost immediately - certainly before I had lost any weight. At first, I couldn't understand that and thought that it must be due to the lower calorific intake.

Initially, I was following a very low fat diet as advocated by Dr Neal Barnard in his book The Reverse Diabetes Diet. Because of that, I put my improvement in blood glucose down to the very low-fat (almost vegan) diet because things certainly happened to me just like the examples quoted in the book.

However, as soon as I started testing, I could see that it was the starchy carbohydrate that was sending my blood glucose levels soaring into double figures. By the way, I hadn't arrived at these diabetes forums at that stage. I was simply logging what happened to me and just new that things were improving dramatically.

It was only after arriving at these forums that the penny really dropped and the complete picture fell into place. Almost a "Eureka" moment if that isn't being a little too dramatic. Of course, I had been reducing my carbohydrate intake significantly because I had been calorie counting to lose weight. I had been weighing a small portion (30g) of cereal instead of filling the bowl to overflowing. I was hardly eating any bread or potatoes because they had a significantly high calorific value. What's more I had already noticed what these foods did to my blood glucose levels.

The reluctance of the health professionals to ever answer my questions gave me further doubts. I started to ask all of them whether they would test if they were diabetic - or what would they recommend a family member or close friend ought to do. Of course when cornered on this matter all of them (yes 100%) said that they would test despite the fact that they had all told me not to. Then I started to ask them what they would do if they were testing and found that certain foods took their blood glucose levels to 10+. Again all of them said that they would do what I did - i.e. either cut out that food and replace it with another, or eat much smaller amounts, or look for lower-GI options.

I didn't question the advice for the first eight years and that led to my condition worsening. After one year of questioning my condition is now better than it was at diagnosis nine years ago. So good in fact that normal detection procedures wouldn't show me to be diabetic and my blood glucose levels are in the normal range almost at all times.

I've just recently posted my full history if you would like to read more - you can find it via this link:

viewtopic.php?f=20&t=10512

I bet your wife would have done the same as me if she is as wise as you say she is.

Certainly, I'm a very happy man!

Best Wishes - John

 

[wallycorker]

By the way Fujifilm - I've just noticed that you are a Type 1. I'm talking from the standpoint of a non-insulin-dependent Type 2. We can only balance our blood glucose levels through changing our diet - we have no other methods.

I think that it must be very much simpler to see what diet is doing to me than for you as an insulin-dependent Type 1.

 

[Bluenosesol]

Fuji,

not one of us can make a claim to have possession of the diabetes silver bullets. I dont think we are really talking about what is grey and debatable. We are talking more about people and professionals who in their interactions and for whatever reasons, allow our fellow diabetics to become isolated from the processes available to the likes of you and I. If beans on toast spike my blood today, the same components will spike my blood tomorrow and in a decades time. That type of advice or evidence can not alter over time. I dont think that the effects or benefits of aspirin in preventing cardio-vascular problems have changed, simply a perception has been introduced that they should not be used as a preventative measure for people with low risk, as the risk of stomach haemorrhage is greater than the risk of CV events. Simply more opinions have evolved to affect personal decisions. Surely this is testimony to the importance of individual choice and awareness?.
When you say one source contradicts another, then you must agree that the INDIVIDUAL and NOT the EXPERT must be at the core of diabetes management, because not all of the contradicting expert opinions can be right and hence your expert's advice may well be counter productive.
Any quality regime will tell you that to prove the process, you must MEASURE, MEASURE and MEASURE. The most crucial measure in managing your diabetes is good BG control. This can be measured regardless of what your dietary advice is. I am sure we all agree that some day in the future, no-one will tell us that we should have been allowing our BG to rise as the evidence is staring us in the face and will not change.

I do not wish to force my methods on anyone and am delighted to hear of success stories from diabetics of all methodologies. I just hate to witness many people who do not have the basic tools and have not been made aware of the basic rules and when I hear that people will just have to die because the NHS is prone to regional disparities, then I simply despair.

Steve.

 

[wallycorker]

Me too Steve - me too!!!

 

[Fujifilm]

John,

I read your story and found it very interesting. I am indeed a fully paid up member and type 1, if I get anything its got to be the full monty :lol:

Having read more on the forum, I see that I am actually quite lucky with the advice and treatment I get from my GP although the service level has decreased over the last decade thanks to Gordon and his merry men but I won't get into that. :x

I have to admit to knowing very little about type 2 diabetes until recently when my Dad got diagnosed, and suprise suprise he was told he could not have any sticks and thats from a doctor who freely prescribes them to me. I was confused by this but now reading your story and that of many other type 2s, the information you get is far worse than type 1s. :?:

My Dad who for the last twenty odd years has been on at me to "control" my diabetes and has not always agreed with the way I manage it has suddenly found out diabetes is a lot more complicated than it appears. Fortunatley my Dad is the type of person who researches everything and realised that the only way he was going to find out what caused what was by testing. Which he does and seems to be doing OK.

I do agree with Bluenoseal that the individual has to be at the core of diabetes management, but you can only manage with the information you are given. If you are a newly diagnosed diabetic type 1 or 2 the only information you have is what the Doctor / Nurse tells you, not everyone has internet access, not everyone has someone else to help them out. So its a bit of a shock to find that the advice people are given is so varied.

Wish I had the answers but I don't, strange as it may seem I have had internet access since the early 90s :shock: but have never really done much research on diabetes, its only recently when I feel my control is not good that I have started searching hence ending up on the forum. Already I am questioning the way I manage it and some of the information I have.

As for my wife having all the answers, its not a good thing. :lol: :lol: :lol:

 

[wallycorker]

Thanks for that Fujifilm,

I can relate to both your own and your Dad's experiences. In fact your Dad sounds a lot like me - was he scientifically trained or an engineer or something similar?

Yes - I've always been a fan of the internet and a very big user but despite that - and after having diabetes for nearly nine years - I only arrived at these forums around six months ago. I now wish that I'd been here a lot earlier!

My wife's just got back from an holiday in Spain (I can't afford to go because I had to buy test strips with my state pension) and I'm not certain that's a good thing either! She has most of the answers too mainly about where my stuff needs moving to - I couldn't even find my meter this morning. I shouldn't have left it on one of her work surfaces I suppose! :lol:

Best Wishes - John

 

[Dillinger]

So to say the long term approach is not harmful because you can't find any evidence is not right. Todays thinking may well be that low carb diet (for example) is the thing to do, who knows what next years thinking might be, Maybe eat as much chocolate as possible, OK so that maybe wishful thinking. :lol: :lol:

Not so long ago I was being told to take half an aspirin everyday because research shows it would be beneficial, now I am told it may more harm than good. The person who gave me the advice was qualified to do so, I have to trust what he / she tells me.

Hello,

I'm not quite sure of the argument you are making? My point is that the current view on diet and diabetes management is wrong (based on my experiences with both following it and disregarding it and researching the chemistry of it extensively). I therefore follow a low carbohydrate diet. If you are saying that one must just follow advice from doctors until that advice changes then I think you are putting too much responsibility for your health in other people's hands. Your health is what it is; it won't wait for the status quo to change.

It is clearly demonstrable that a low carbohydrate approach benefits diabetics; our only worry should be does this cause further problems for us (i.e. the purported risk of coronary heart disease from the fat in our diet). If so we need to assess that; but here's the thing there is no evidence that suggests that; other than the mantra 'fat bad' 'balanced diet good' - which is not an expression of fact but a statement of belief. If you look at the biochemistry of this it doesn't stack up.

I think the analogy is this; if you are in a building and you can smell and see smoke don't wait to be told to leave! Well I can smell the smoke with this 'plenty of carbohydrate' advice and I'm not waiting around for alarm bells to go off!

 

[Reynor]

I have just read all the contributions here and now feel totally depressed.

When I was first diagnosed type 2 (7 years ago at the age of 70) I followed the NHS advice given by my GP and practice nurses. One of the things I was told was that if I changed to long-acting metformin it was possible that I would experience hypos of 24 hours duration!
I was told I must eat plenty of carbs, etc.

I have come to the conclusion that many NHS staff confuse type 2 with type 1 and it seems from this forum that nothing has changed.

 

[Fujifilm]

I think the analogy is this; if you are in a building and you can smell and see smoke don't wait to be told to leave! Well I can smell the smoke with this 'plenty of carbohydrate' advice and I'm not waiting around for alarm bells to go off!

The difference is If I smell and see smoke, I would investigate because it may well be a small fire that I could put out. You have left the building and left everyone else to perish. Walking out and leaving it may work for you but certainly not for me. :lol: :lol: