Baffled

[Scoop]

Hi I am recently diagnosed with type two diabetis which was caused by prescribed steroids. I take metformin two twice a day and one cliclozide daily. The reason for my confusion is all of the conflicting advice I am getting when looking for help and advice.
I saw a programme this morning on the BBC with Gloria hunniford. It was about type two diabetis the diabetic specialist Doctor on the programme said no carbs potatoes pasta bread . Yet this site says carbs OK in moderation the dr on the BBC said no more than one slice of bread a day. Yet on this site it tells me I can have toast for breakfast a sandwich for lunch? .
It's not just this site I have looked at sites both in the UK and the US all of which give advice which is poles apart .
I am having the same issues with blood results I test twice daily morning and evening . Again it depends on which site you go on you cannot get any two sites to agree on what are good or bad results.
I cannot seem to find a definitive answer to what and what not to eat to manage my condition, I cannot seem to find a definitive answer as to what blood sugar readings I should be aiming for .
As the title says baffled , and I am I have no idea what is right or wrong . There is little wonder this disease is so badly managed if the professionals can't seem to agree , how do we as patients have any chance of getting our condition under control . I am pretty sure the replies to this post if I get any will differ as much as the professionals I await any replies with interest.

 

[Robin]

Hi scoop, and welcome to the forum. Yes you probably will get all sorts of different advice on here, it makes for an interesting forum, but most people on here do tend towards the no carb/reduced carb end. It all came about because of the dietary guidelines issued about twenty years ago, when it was thought that fat was bad for you and caused heart disease, something which diabetics can be more prone to. This has now largely been discredited, but the dietary advice hasn't kept up to date, and a lot of diabetic nurses and dieticians are still peddling the 'official' line of eating mainly carbs! Programmes on the BBC at the moment all seem to be reflecting more up to date thinking.
Having said all that, everyone has a different reaction to carbs, some can tolerate porridge, for instance, others find it causes them to have a massive spike in blood sugars. The only way to find out for sure what you can tolerate is to test before eating, and two hours afterwards, and compare the results, The two hour one shouldn't be more than a couple of numbers above the 'before' one.
I expect someone else will be along in a mo with their own take on it. At the end of the day, it's for every individual to work out what suits them best!

 

[Scoop]

Thanks for your reply robin but surely with something as important as this it shouldn't be open to speculation and individual interpretation . I shouldn't have to work out what is good what is bad for me , there should be at the very least official quide lines to follow . I'm new to this and it seems crazy to me that I have to work it out for myself . I might as well take a coin from my pocket throw it in the air heads it's carbs tails it's no carbs ,it's as scientific as the contradictory advice that's available on medical sites. I have a monitor for my bloods but was told by "the diabetic expert"at my GP centre that I don't need to take them to often. I asked about numbers and blood readings and the nurse specialist was very non comital . The way I see it is the NHS gave me diabetis . They then gave me a blood sugar monitor and have not been very informative as to why I have it . I cannot see the point of recording numbers which mean nothing to me and which I don't seem to be able to find a definitive answer as to what is good or bad. I now have a very serious disease and I cannot find definitive answers to what I think I need to know. I don't believe it should be down to you and me to work out what is right or wrong good or bad with something as serious as this. I am amazed as to how Heath Robinson the treatment of type two diabetis is in this country. I have spoken to a number of friends and they find it hard to believe as well . Again thanks robin if I can't get official answers at the very least I can get it off my chest. Scoop

 

[Amigo]

I don't think there can ever be an absolute right or wrong way Scoop because we are as individual as our diabetes and some people can tolerate more carbs than others before spiking beyond the recommended levels. It isn't really a cop out! Lol
The levels to aim for are more prescriptive and set out by NICE. For type 2's the recommendation is to aim for between 4-7 before eating (so morning fasting level) and under 8.5 two hours after a meal. I aim for that and also aim for the recommendations that say keeping your Hba1c under 48 will reduce the chance of diabetic complications long term. You can't know how you're doing without testing before and after. Medics are trying to save money which is why they often don't encourage more testing. And they are paternalistic in their attitudes!

I think you've been left with a sense of anger and injustice about how you got the diabetes Scoop but the reality is that although the medics will give advice, it's not a one size fits all response. I might be able to eat 4 slices of bread a day and never go above 7 and the next person will spike to 15! Our pancreas response is different in each person. Try not to jump more than 2.5 after a meal is what I follow but less is better.

Many medics are out of touch so my advice would be test yourself and learn what you need to keep Scoop healthy. I'm sorry if you feel your diabetes was steroid induced but perhaps you needed the steroids for a serious medical condition and they couldn't have known this would definitely occur. I'm going to need steroids for cancer treatment at some point and it will mess up my levels big time!

 

[Stitch147]

Hi Scoop and welcome to the forum. Unfortunately with diabetes as I have found over the past 6 months since diagnosis, its definately not a one size fits all. Everyone is different. My doctor has been great told me the sorts of foods to avoid or reduce, what sort of numbers too look out for when testing and how many times to test. I test upto 6 times a day, before breakfast (my waking reading), 2 hours after, before I eat my lunch, then 2 hours after, before I eat my dinner and 2 hours after. I keep a food diary with this and if I see more than a 2mmol rise in my BG levels I will avoid having that food again or try a smaller portion of it depending on what it was. I have reduced the amount of carbs I have, cut out white bread, but I will have seeded wholemeal bread as this doesnt impact my BG levels too much. I make porridge for breakfast most days, but I know that other people have to avoid porridge as it will spike their levels up too much. Diabetes is a baffling thing and it has been a huge learning curve for me. Most mornings my BG levels can be anything between 5.5 and 9.5 and after meals. Unfortunately we are all different with this and what works for one wont work for another. We are all diabetic for different reasons. I have found that on my journey so far through the wonderful world that is diabetes I have had to find what works for me, what is good and what is bad for me. Unfortunately you do have to work a lot of it out for yourself as no 2 diabetics are the same.

 

[grovesy]

Foods don't have the same affect on us all. Also it is often the quantity of a food that affects us.

 

[Scoop]

Thanks to every one to amigo I'm not annoyed at the nhs without the steroids I doubt if I would be here now so no regrets on that front. I hope your journey with steroids turns out better than mine.
I'm now beginning to see that it looks as if it's up to individual practitioners how much or how little your told. My concern is I still feel there ought to be at the very least some guidelines. Even codes of practice or protocols for practitioners to follow but it still feels a bit Heath Robinson to me . Until I came to this forum I had no idea of a lot of the things that you have passed on to me. That should be the job of clinitions not individuals. It feels a bit like you have diabetis here is a blood glucose machine now get on with it. I think the whole treatment of this problem is at best poorly managed at worse neglected. I know there is no cure I understand that everyone is different but the treatment and information should be universally administerd. So that we all have some idea of what is required of us to combat this problem thanks for the information scoop.

 

[khskel]

It really is better for us to proactively manage our own condition because irrespective of type we all have our own version of diabetes so it's best to become acquainted with the capricious nature of the beast.

 

[robert@fm]

It feels a bit like you have diabetis here is a blood glucose machine now get on with it.

Many T2s don't even get that much -- they are told "T2s don't need to test" although that makes no sense whatsoever, not even economic except in the very shortest term.😡

 

[Sally71]

I think a lot of people would agree with you Scoop, a lot of GPs seem to know frighteningly little about diabetes (of any type), and what they do know is often out of date or just plain wrong!

Ultimately it's YOUR diabetes, and if you want to stay healthy then you have to find out as much as you can about what works for you, and then you have to try to stick to it, and it is bloody hard work sometimes!

This forum is a good place to start, you've had some great tips already, good luck 🙂

 

[stephknits]

Perhaps you could ask if there is a DESMOND course available to go on in your area. These are 1 day courses which give you an overview of living with Type 2 diabetes. Education, in order that we can effectively self-manage is part of the national guidelines. I believe the guideline suggest all newly diagnosed people should be offered some sort of education within 6 months.

The days are useful and do give you some guidance with regard to carbs, however I'm afraid, like all the answers on here, they will say that you have to work out what you can tolerate. Do take a look at the stickies on top of the newbies section which have some excellent advice on how and why to test your blood sugar, which should really help you make the best use of your little machine.

 

[Lindarose]

Hi scoop. Hopefully the above answers have helped you realise we really have to deal with our own diabetes as much as possible by making our own decisions based on how we react to things.
For me at least I find exercising when I can -just walking is good and eating low carb helps lower bg levels. And of course self testing to see how foods and exercise effect you personally. I haven't eaten a banana since I was diagnosed yet others on here can. And my wonderful porridge isn't really allowed either.
It's so wrong that guidelines vary and if you follow some GP advice things won't improve. It's wrong too that if you haven't got the ability or means to be pro active with your diabetes you have to rely on the treatment views of whoever provides your medical care.
The fact that you have raised concerns about all this makes me think you will be pro active!

 

[trophywench]

The whole 'thing' about diabetes (whatever 'type' it happens to be) is as individual to that particular person as the colour of their eyes or hair. Whilst the same thing affects us all - ie carbohydrate increases or blood glucose because our bodies can no longer cope with them (whether it's auto-immune or steroid induced) but NOBODY knows beforehand what the same amount of it will do to any person at all.

It does land up that we actually have to treat our OWN diabetes (we have to because no medic is ME and they couldn't be here in my body at the same time as ME) - and use doctors, nurses, books - and more recently - websites!! - to inform us. Medics can also offer advice if it happens to be their specialist subject, but even that knowledge is limited, and especially in comparison to a hospital Diabetes consultant. The latter only sees diabetics. The GP sees people with enough various illnesses and conditions to literally fill a medical dictionary, doesn't he? - so his knowledge about any particular one of those - is limited!

As Linda said, you ARE pro-active (we know that - for the simple fact that you are here and asking questions in the first place!) - so my honest advice to you is - Get Reading ! I suggest you start at the beginning of a website address I'm going to give you - LEARN and use what you learn to help yourself !

http://loraldiabetes.blogspot.co.uk/

And KEEP asking questions! You will - mainly - get sensible answers ! Good luck!

 

[Scoop]

Thanks for all the advice on how to cope with this dreadful disease I now have another stick I'm beating myself with blood glucose testing. I tested my blood one morning and it seemed a little high ,as I hadn't eaten anything or drunk anything that could have caused it I tested again only to find there was a 2.5 difference. So I tested again and get another figure . It seemed that each time I tested a different result sometimes up to 2 points or more. I read the instructions that came with the machine and I thought I had found the problem calibration. I carried out a calibration test exactly as instructed by the machines handbook . I was surprised to learn that for the machine to be considered calibrated , It just had to fall within a scale of 6.1 to 9.1 . I thought that doesn't seem particularly accurate . I carried out four tests complying to the instruction manual. All results were different like my blood tests.
I did some reading and found that glucose meters have no compulsory test parameters by law. Most adhere to a 2013 guideline which states that blood glucose meters should have 15% accuracy in 95 % of the tests. That means if the machine I have been given can be totally wrong in 5% of the tests and has only to be within 15% of a correct reading in 95% of the tests . I'm not happy with those sort of statistics. When you also consider all of the other things that affect getting an accurate reading the numbers start to become meaningless. If you don't wash your hands ,temperature ,humidity,altitude ,medication, I could go on and on but when you throw these into the mix plus the 15% and five % variables it would be a miracle to get even close. My predicament is this, I test first thing in the morning and I should have a reading above 4 and below 7 . If I get a reading of 6 that could actually be 6.89 or 5.11 or worse if you factor in other variables such as test strip batch differences , wether you have left the strip pot open or not etc etc. A reading of 7 could be 5.95 or 8.5 a reading of eight could be9.2 or6.8 a reading of 9 could be 10.34 or7.66. So how am I supposed to get even close to the numbers I am trying to conform to. I contacted the company as I was hoping to be told I was totally wrong . When the eventually got back to be they just quoted that the machine does conform to guidelines. You know the one it only has to be right 95% of the time and then it only has to come within 15% of the correct figure. I asked how am I supposed to be able to manage my diabetis with these sort of figures. The answer was would you like a new machine and new test strips, or would you like to talk to someone. I can't believe that it's the best that can be done in 2016 , granted its better than the previous guidelines prior to 2013 which was 20% ,95% of the time. I can't speak for insulin diabetics as I don't know how this affects them though I have read many have been made very ill by just relying on the inaccuracy of these meters. It isn't just me the newly diagnosed diabetic patient who feels like this. I found many accounts of profesional specialist consultants who cannot believe that these inaccuracies are acceptable. One figure I read stated that we could at best , testing four times a day be only 8% accurate over the year. When you consider the cost of these machines to the health care organisations around the world they should be forced by law to get better results from these machines, it shouldn't be a voluntary code . So my diabetic journey so far , totally conflicting diet advice ,given figures to achieve with no means of testing those figures, unfortunatly as some have said you virtually have to make it up as you go along. There is little wonder that diabetis is so badly controlled.

 

[SB2015]

Hi Scoop, I understand your frustrations with the variability of readings.

These machines are a massive improvement on what many people had to use years ago, testing urine (which is then told them the picture from a long while ago). That said the readings are variable. I have not looked into the technicalities like you have but I try to focus on the patterns that my readings show. So long as I pick up hypos in good time (which I do and strangely notice these round about 4.2) I can then rest of the data to try to work out the impact of different foods.

I joined this forum a year ago, and had never had so much help with gradually changing my diet. The GPs and nurse specialists at the practice rarely live with the condition, and base their advice on as much information as they have access to. We all have access to data every day, so it is in our own hands. None of us is a robot and different foods impact on our BG in different ways, so it is down to us to work out what happens and what to do.

You are already taking note of how your body is working and have started to ask questions. Keep asking and monitor what happens to yourself. I find it very helpful to keep a weekly record of what is happening and my 'during The Archers activity' (to avoid me shouting at Helen or Rob on the radio!) is to review the patterns and make any adjustments.

It is a lot to take on at the start but it does get easier.

 

[trophywench]

LOL at your frustration mate - and frankly - you better learn to do that PDQ if you intend to stay sane.

Unless of course, you are in a position to invent something better in which case please feel free to do it, as long as it isn't too expensive for the NHS to fund. I estimate you'll need several million quid at least to get that sorted and manufactured, if not a billion or more. Couse it will be years coming to market and being agreed by all the various Health bodies in all the various countries.

Since the rest of us don't have the expertise or the money - and also recognise (at least if we are Type 1 we have to) that prior to 1923 we wouldn't even be alive by now to accept the situation.

As SB says - many of us had to rely on boiling up our pee in a test tube, which indicated to us (but wasn't positive since we wouldn't know our exact renal threshold) the %age of glucose in our bloodstream 2 hours ago - and that was all we had to guide us except once or twice a year when they kindly did some blood tests.

Yet despite relying on such things for our very LIVES - here we are today, a lot of us with absolutely no complications and some of us with very few. Mine are eyesight related but nowt to lose any sleep over - 'Diabetic changes/background retinopathy' that I've had since the mid 1990s and now I have cataracts and am waiting for a date for the first of the two ops - which they do under local in about 20 mins, and take a morning out of your life for each one.

If we can manage for 40 plus and 50 plus years to be WELL controlled - it is because truly - the control is all about how much WE do ourselves to help us, rather than what anyone or anything (other than that insulin of course) does.

 

[pottersusan]

Diabetes is incredibly frustrating, especially when you are a control freak (as most people on here are).

We are all different and it takes time to discover what is best for you. There are also a lot of variables to factor in, but we all keep working at it.

 

[Northerner]

Whilst I realise that they don't claim total accuracy, I do think you need to observe them over a long period to see that they really do actually work very well. I've been diagnosed for about 8 years and have all my BG diaries over that period. The day-to-day readings from my meter reflect my level of control and the influence of adjustments due to diet, exercise, illness changes etc. very well - my HbA1c is rarely a surprise. They are, in their current form, the best tool we have and they do help people to get their levels under control and manage their diabetes well, so they do a good job as things stand. Whilst some occasional results might be at variance with how you feel, the majority can be taken as pretty close to actuality and acted on accordingly. I've probably had less than a dozen 'dodgy' strips out of about 20,000 so far!

 

[trophywench]

5 x daily since the late 1970's/early 80's Alan - still had to buy the meter, but by then you were allowed the strips which is why I invested - and ONE pot of dodgy strips!