Wish they'd make their minds up

Hi Ian,
I'm a DESMOND educator, and we constantly get asked about monitoring blood sugar levels. There was (fairly) recently a study done on SMBG (self monitoring of blood glucose) where three groups of newly diagnosed patients were randomised into 1, blood glucose testing 2, urine testing and 3, nothing at all. it showed that all three had good benefits, including doing nothing at all. there is a problem with quality of life being affected as well with testing you blood/urine sugars in that it's a bit like dieting and getting on the weighing scales every day - you can get a wee bit obsessed with it. the blood sugar testing only shows what your blood glucose levels are for that moment in time, if you did it again 5 or 10 mins later, you could get a completely different result. there are lots of things that would affect your glucose levels, inlcuding stress, illness, activity levels, mood, so it's not just food/drink that affects your levels. where i agree that a target blood glucose level is 4-7mmol, i wouldn't necessarily say that you have to monitor them yourself to get a good result. your HbA1c that they do every 3 months is a much better indicator of your progress (think of it as if you checked your blood sugars every second of every hour of every day for 3 months!). does this help? pm me if you need to.

I'm sorry pipstick, but if you listen very carefully, you'll here the sound of no-one agreeing with you. Not giving T2 diabetics access to testing (and even worse suggesting that they don't test) is a pretty sore point around here.

pipstick said:

there is a problem with quality of life being affected as well with testing you blood/urine sugars in that it's a bit like dieting and getting on the weighing scales every day - you can get a wee bit obsessed with it.

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You can indeed, but it's also quite a good way of losing weight. I wonder how many people would successfully lose weight if they were forbidden from weighing themselves and only allowed to weigh-in once every three months at their Doctor's surgery?

The only data that I'm aware of, suggests that women who weigh themselves daily, are leaner than women who weigh themselves once a month. It's a bit like driving your car without a speedometer, you'd get plenty of tickets if you only got an average speed check every 30 miles.

There is a management saying which goes "what gets measured, gets managed". Without performance metrics, it is almost impossible to get good results. I wouldn't dream of doing that at work, and I certainly wouldn't do it with my health.

My quality of life is enhanced dramatically by knowing that I'm doing a good job of controlling my diabetes and don't have to worry about consequences of poor control when I'm older.

pipstick said:

the blood sugar testing only shows what your blood glucose levels are for that moment in time, if you did it again 5 or 10 mins later, you could get a completely different result.

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Really? Why would it be different 5 or 10 mins later? I notice mine going up if I've eaten recently, and then going down as my insulin does its thing. I'm sometimes surprised when it is a little higher or lower than I expected, but these days I generally know what it's going to be before the number comes up.

pipstick said:

there are lots of things that would affect your glucose levels, inlcuding stress, illness, activity levels, mood, so it's not just food/drink that affects your levels.

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Yes, but those are all second order things, most of which can easily be discounted if you measure your BG before you eat, rather than just afterwards. Like most informed diabetics, I'm intelligent enough to spot the patterns and account for the differences.

pipstick said:

where i agree that a target blood glucose level is 4-7mmol, i wouldn't necessarily say that you have to monitor them yourself to get a good result. your HbA1c that they do every 3 months is a much better indicator of your progress (think of it as if you checked your blood sugars every second of every hour of every day for 3 months!).

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Well that depends on what you consider a "good" result. If we're talking about a standard NHS response of "a HbA1c of 7% is very good, well done!" then yes, you probably can do it without testing. But if we're talking about getting a HbA1c in the non diabetic range (4.5 to 5.5%) then I don't think you can do it without understanding how your body responds to different types of food.

Are there any diabetics here with good control, that managed to do it without testing their blood (at least initially)? I'm not aware of any. I do know many who come here with poor control who have been told not to test their blood, and have no idea how what they eat affects their diabetes.

Seven months in, I tend not to test all the time, but only because I spent the first 4 months understanding exactly what was driving my diabetes. For me, and others, HbA1c is a target that I chase, rather than a measure of my blind control over the last three months.

Please don't take this personally, but I think advocating the T2 diabetics don't check is dangerous and stupid. It certainly doesn't tally with the piles of anecdotal success reported in the pages of this forum (and other, check out Jenny Ruhl's website if you fancy seeing the world from a T2 perspective).

Testing is absolutely fundamental to good control. That sort of advice is exactly why many of us have fallen out of love with our HCPs and support each other on forums like this instead.

Stephen

As a HCP pipstick this is the sort of answer I would expect. Towing the party line....

There are (T2) people who giving strips to is just a waste of money. Those are the sort that have no intention of changing their diet and going on their own merry way taking more and more meds.

I'm a proactive type, like many on this forum, I want and need strips. I want to get my HbA1C in the 5's, know what food is raising my BG levels and reduce the risk of complications. I don't want to be testing every 5 minutes and I am not obsessed with testing. I'm sure many Type 2's would agree with this statement.

The proactive types are penalised because of the people in the first group, our doctors can't distinguish us from them.

I only get a HbA1c once a year at my annual review, this is too long in my book. To get one more often I have to specifically ask for one, but it is not encouraged. I had a period of very bad control a couple of years ago but my doctor knows nothing about it because I didn't have a HbA1c in that period. Where you get the 3 monthly HbA1c timescale from pipstick, definitely doesn't happen where I live, even when I was newly diagnosed. I have never been offered a DESMOND course, they just don't do them here.

I do get strips prescribed (but I only order what I was told I was allowed - 3 per week) and fund the rest myself. I've just noticed on my latest repeat prescription that it says when I last ordered the particular med.

I agree with all that borofergie has written - he was composing his reply at the same time as mine.

))Denise(( said:

I agree with all that borofergie has written - he was composing his reply at the same time as mine.

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If you weren't so busy wasting your time testing, you would have been quicker on the "submit" button :lol:

(I agree with you too).

I think if you're pro-active and want to be in control of your diabetes you should be given a monitor. If the doctor hadn't given me one, I'd have brought one. Diabetes is invisible and if you're concerned and want to be in control you need a monitor.

The diabetic nurse who seemed somewhat jaded regaled me with tales of people only testing when they've binged or testing sugary drinks with their strips. She seemed to expect that all people were going to behave like that.

Testing has helped me understand my diabetes and I'm bringing it under control. Without I would be floundering and panicking about what I should or should not be eating and getting seriously stressed. One thing I've learned through testing is that even low-level stress makes my levels rise. I'd not have known otherwise.

I'm very glad I opted out of the DESMOND course that I was booked onto. My GP who is the diabetic specialist at our surgery advised me that I didn't need it as I was already doing everything I needed with good results. I have to say that I was horrified when I read the booklet about the course that was sent to me. I didn't want to fill in a page about my feelings with regard to diabetes thank you very much and I certainly would not want to discuss them with other people. What I wanted was strategies to deal with it not discussions on my feelings and I think my own strategies are working well for me. If they discourage testing on these courses then I am doubly glad I didn't go.

I also agree with you borofergie and I just love your sense of humour :lol:

I have been on this forum since the day after my diagnosis of T2 in June 2008 and this has to be the only post that has made feel the way I feel right now.

Pipstick, on diagnosis, my HbA1c was 5.6 yep, that's right, 5.6 and I have diabetes. I remember well the crushing hypos I used to have. My poor liver and pancreas swinging wildly to try to keep me balanced.
I asked for and was given, reluctantly, a monitor and some strips and I learned how to use them, fast. I was advised to eat the diet that most of us are told to; base every meal on starchy carbs.

The ONLY way I have achieved a seven stone weight-loss, an HbA1c of 5.0 and regular levels in the high 4's is by testing. Had I relied on the HbA1c test which I'm offered on a YEARLY basis I fear I would have ended up bumping into my dialysis machine in my electric wheelchair. The thought of having not the slightest clue about what affects my blood sugar actually induces the feeling of panic I've not had for many, many years.

You have stated that you want to allow the clients in your care the opportunity to control their own diabetes and not feel like failure or labelled non-compliant. Well, give them the means to test and give those who don't understand carbohydrate metabolism the means to understand it. If they then choose to ignore advice, so be it.

My father has been slowly rotting away for years. We are not sure exactly, why he is still alive and believe me, he is suffering. I don't know which is worse, him going through it or us not being able to do a **** thing about it. And all because he has been patted on the head and told to run along and take set doses of mixed insulins since the age of 58. he is now 88 and trusts every word his HCP's give him. He has been labelled lazy, non-compliant and a drain on resources but NEVER, in all his years as a diabetic, seeing hundreds of diabetic 'specialists' has carbohydrate metabolism and the role of insulin been explained to him. He feels a failure and simply cannot understand why he has followed instructions for thirty years to the letter and is dying a death so slowly and painfully.

I will take this opportunity to apologise to Ian, the OP for this hijack and I'd like to thank borofergie for his post. You have written what I want to say but can't.

wiflib

borofergie you're a star! I have bought myself a meter and test strips. I was horrified to find out how carbohydrates affected my BS levels and since I have been type 2 for 5 years that's an awful lot of potential for damage already. Since testing and adopting a lower carb. approach to eating I have stabilised my BS levels and lost 15 lbs. I would never have done this without testing. I get a pat on the head once a year, a smile and that's about it.No education. No help.So in between it was possible to have periods of chocoholicism with no sign at my review. Without the meter I could 'blank out' my diabetes . Please, please NHS everyone should have equal access to meters etc.

Hi Pipstick.

You have asked on your other thread about the problems we have with HCP's..I think this thread shows categorically what one of the biggest problems is.

Yes, we all know how different things can affect our levels but have a good look around the forum and at some of the HBa1c results people have printed under their signatures..many of them have managed to lower them significantly..do you honestly think they have managed this with just a 3 monthly/6 monthly/12 monthly HBa1c? It is because regardless of whether they choose to low carb, reduce carbs, take meds, not take meds..they are able to see what foods affect them adversely and what doesn't cause problems.

With the greatest respect to you because you seem like a nice lady, this common myth that is bandied around about people getting "a wee bit obsessed" with self monitoring is nonsensical! If there is some secret army attacking their fingers countless times per day and then running to the docs every time there is a rise in levels then I might agree but I would love to see evidence to support this. In fact I would love to see evidence that regular self monitoring has led to a regular increase in HBA1c levels over a set period of time.

The thing is, it's common sense and this is what seems to be generally lacking in the current system. To not give us the tools we need as diabetics to monitor our own health is wrong. The current system of only advocating the HBA1c as a monitoring tool is failing and failing miserably.

The number of diabetics are on the increase and so are complications associated with the condition. The NHS has got this one wrong (I believe NICE guidelines advocates self monitoring although I could be incorrect) and I wonder when they will finally see the light.

If they were doing it right, you would have great success rates. The figures speak for themselves, the proof of the importance of self testing is there for anyone that wants to see it. Better awareness, better compliance, better health and fewer complications.

No self testing-take the meds, give dodgy dietary advice, send the patient homeward and call them back in 3/6/12 months and wonder why their diabetes is getting worse.

I'm afraid the facts are there and indisputable..we are all just waiting for the NHS bods to take the hint.

So pipstick, I make it 9-0 in favour of testing (with hopefully more to come).

Are you going to continue to "tow the company line" or are you going to listen to the voice of thousands of real life diabetics?

pipstick said:

I just wondered if anyone had any quotes from health care practicioners that they found frustrating or exasberating, especially when they want you to change something about your lifestyle in relation to diabetes.

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You came here looking for feedback on Health Care Professionals and Diabetes, it looks to me that you've found the perfect topic for your talk and a perfect opportunity to undo some of the harm that is done by HCPs advocating against testing for T2 diabetics.

I would be very interested to hear the feedback you got from that talk.

Well pipstick now we see the true colours. hopefully, those who demonised me somewhat for querying your role on this forum will understand my concern. You may like to know that I am currently engaged in helping administrators put together an e petition as to why we all should have access to testing, and here you are telling members not to bother. You even invite them to "pm" you for more info on the basis of your expertise presumably. You might also now understand my reservation about non diabetics on the forum. No diabetic would have given the technically incorrect answer you gave.

Grazer said:

You might also now understand my reservation about non diabetics on the forum. No diabetic would have given the technically incorrect answer you gave.

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Well Malc, that all depends on whether she listens and learns and comes back here to contribute to the discussion or, as you originally suggested, she just takes from the forum and doesn't give anything back. (I'm not holding my breath).

I'm very much in favour of educating the "educators".

Yes but what was she REALLY after? Was she just hoping to infiltrate our ranks and spread propaganda about the dangers of testing so that epeitions would be withdrawn and we would all hand in our meters{when th eamnesty was declared}
From newlly qualified Gps and other HCPs who haven't done the" joined-up thinking course "or still believe I am one of those who every word of the traing manual - may the Good Lord deliver us!

I am one of those for whom lowcarbing worked. I had no idea the effect carbs had on me but a "hint" from a dietitian {I am a skinny T2 just beore I was fortunate enough to find this forum set me on the right track and the advice and supor I found here turned it all around for me.
I would be surprised if you are inundated with pms asking for your advice pipsick . As has been pointed out above - any of us have found that doesn't work .

I would really like to hear from HCps who were themselves diabetic and on insulin or medication.

Wow, the cat is out of the bag now as we have encountered another HCP who thinks they know what is best for us and came here pretending that they were going to help us get our message across but showed his/her true colours on this thread.


I am one of the lucky ones as I have had excellent care since my diagnosis in 2003 including being educated on diet and how to use test strips. I joined this forum in 2009 because I developed a frozen shoulder and had been online trying to find out about it and stumbled across this forum.

I couldn't believe the mess that some people were in and the bad advice they were being given by the professionals as it bore no resemblance to the advice I had been given. They were having more and more medication added to their regime as they were not being advised on diet and their HBA1c's were getting higher as they had no way of knowing how food was affecting their numbers.

Unless you have Type2 diabetes then you have no understanding of the need for test strips and the HCP's can bang on about there being no need to test but it is a lie, it does not work unless you have the tools to help yourself as you are managing this chronic condition on a day to day basis. We all know that there are other factors which influence our blood sugars and to suggest that we will become stressed if we keep testing is ridiculous. We test before and after meals, not every few minutes of the day. If the numbers jump up then we try and find out why. Was it something different we ate, have we been more stressed or have we done less exercise or are we sickening for something?

Why intelligent people are suddenly treated like idiots when they develop Type2 diabetes is beyond me. We are not mushrooms and should not be left in the dark but should be given good advice. HCP's should have our best interests at heart and treat us as they would treat a member of their own family. It is not rocket science to understand that food affects blood sugars and if the dietary advice that has been given is not working then there must be something wrong with it.

There will always be the need for medication for some people as their pancreas is more tired than some other peoples but that does not mean that diet will not help as well.

All this topic has done is to show that some HCP's do not have a clue. All the statistics in the world do not make something right.

I agree 100% with everyone who has posted their comments on the importance of self testing blood glucose and would add just one more thing.

pipstick said:

your HbA1c that they do every 3 months is a much better indicator of your progress (think of it as if you checked your blood sugars every second of every hour of every day for 3 months!). does this help? pm me if you need to.

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I totally disagree with your point above pipstick, the Ac1 only shows an average BG level over a 90 day period, It does not show the very dangerous spikes that can happen after a meal high in carbs and it is generally now accepted that these spikes can and do lead to diabetic complications.

For example If someone has a kipper for breakfast their bg levels will not rise much, if at all, as a kipper is carb free, perhaps they have a chicken breast with some vegetables for their lunch, again no large increase in bg levels as a relatively carb free meal again bar the small amounts in certain veg. Now say for their evening meal their fancy a meat pie with lots of pastry a large baked potato and some baked beans, result bang a huge spike in bg levels that will not be shown on an HbA1c test as it will only show an average!

In your original post you said you wanted opinions and quotes, will I think you now have a few to be getting on with, eh?

@ Pipstick
In someways, I'm disinterested here, I'm T1 and have no problems getting enough glucose strips but I have been on these forums long enough to know their value to people with T2.

Self monitoring is only any good if the person is motivated to do it, and knows how to make use of the results. As you will read on this thread, and elsewhere on the forum, people here are mainly well motivated ( and reading of others sucess is a great motivator) Self monitoring has been a vital tool that has helped many of them gain excellent control over their blood glucose levels .However, I appreciate that anecdotal evidence is not sufficient. so perhaps you might look at the evidence.

I suspect you were referring to the DIGEM study on self monitoring (Farmer et al 2007) .
It is worth reading all the responses, many of which point out its flaws. (see the first in particular)These responses come from both professionals and people with diabetes
http://www.bmj.com/content/335/7611/132 ... _el_179004

There is a report by a working group of the International diabetes federation in 2008.(Andrew Farmer was in fact a member)
http://www.idf.org/webdata/docs/SMBG_EN2.pdf
This commitee evaluated all the evidence available and gave these recommendations.
This is by no means the blanket dismissal of SMBG that you seem to give.

1. SMBG should be used only when individuals with diabetes (and/or their care-givers) and/or their healthcare providers have the knowledge, skills and willingness to incorporate SMBG monitoring and therapy adjustment into their diabetes care plan in order to attain agreed treatment goals.2. SMBG should be considered at the time of diagnosis to enhance the understanding of diabetes as part of individuals’ education and to facilitate timely treatment initiation and titration optimization.
3. SMBG should also be considered as part of ongoing diabetes self-management education to assist people with diabetes to better understand their disease and provide a means to actively and effectively participate in its control and treatment, modifying behavioural and pharmacological interventions as needed, in consultation with their healthcare provider.
4. SMBG protocols (intensity and frequency) should be individualized to address each individual’s specific educational/behavioural/clinical requirements (to identify/ prevent/manage acute hyper- and hypoglycaemia) and provider requirements for data on glycaemic patterns and to monitor impact of therapeutic decision making.
5. The purpose(s) of performing SMBG and using SMBG data should be agreed between the person with diabetes and the healthcare provider. These agreed-upon purposes/goals and actual review of SMBG data should be documented.

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Finally there was a more recent trial in which the participants were instructed on how to use self monitoring in an effective way.
http://care.diabetesjournals.org/conten ... l.pdf+html
Those who were taught to self monitor had a significantly greater improvement in HbA1c than the control group. Moreover, and perhaps most importantly, patients in the structured SMBG group also showed improvement in mean amplitude of glucose excursions and in 7-point blood glucose profiles over the 12-month period. (ie the glucose spikes were lower )

In my opinion,that trial shows improvement with a minimal amount of structured testing,( less than many try to do in the initial stages) The anecdotes you read on here suggest that periods of more highly intensive testing may lead to even better results. That intensive testing doesn't have to go on for ever.
The final link I'm going to give is to a blog (sorry moderators) and therefore back to anecdote.
This page succinctly contains the type of advice I've read here and elsewhere on the internet and has helped many people with T2 achieve good glucose control.
http://loraldiabetes.blogspot.com/2006/ ... djust.html

Wonderfu; post Phoenix. I hope pipstick prints it out and distibutes it o those who "educated ".
HER.

Perhaps some thorough research mightt benefit many. It is a pity more research is not done before HCP's start preaching the party line .
This doesn't seem to be the fashion however. I was surprised when pipsyick asked for examples of negativity fronm HCPs as he forum is awash with them. Maybe she really wanted comments about self-testing in orger to compose her replies in advance of her next course.

I could give her some examples of the otally ludicrous reasons not to test that I have heard but I think she should pracise doing things for herself.

Just reading through your post and the links you have provided is probably all anyone would need..
Very interesting.

I might be the last you'd expect to say this, but maybe we should go a little easy on Pipstick now. I agree with ALL of the comments made by members on this thread; we ALL know why it's vital for T2's to test, regularly at first and then maybe not quite so regularly; but I'm sure Pipstick's reply was MEANT with good intent, if very misguided. Hopefully she? (you never can be sure with usernames!) will now have realised that there's more to dealing with diabetes than the limited information and guidance pumped out by NICE and health care organisations in general. As someone said on her original thread, I'm sure she's a very nice person really.
The original question was asked by a new member, recently diagnosed. He should know that we're not always this vitriolic, it's just that we have enough of HCP's at practices and clinics telling us "no need to test", without being told this by our own members! To the original question, Of COURSE you're right, you should test, is the answer. We all react differently to different foods eaten at different times and cooked in different ways. Only by testing can you find out how YOU can best deal with all these variations in how our BGs react under these different situations. THEN you can deal with things in ways that suit you. You will find much more on this site about how best to test, and how to utilise the information that testing gives you.