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Diabetic experts recommend not testing??

Resurgam said:
Today 7.7 mmol/l - it is so encouraging to see the numbers dropping every day. Absolutely encouraged to go on being careful about what I eat - the Christmas present of chocolate was received with thanks and passed on to the hopefully non diabetic husband of mine. It seems crazy to deny people the ability to check, but where meter and strips etc are supplied people should be followed up and asked for readings on a regular basis, or for the meter to be returned so that they can be put to good use.
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Sounds like a good idea.
 
Jamrox said:
So annoying isn't it . One day the medics guidelines will catch up with the lower carb / testing revolution .It will cost them money initially but will save in the long run.

I believe in the low carb / test revolution because it works for me ( nearly 4 years post diagnosis and still diet and activity controlled). For me my monitor is the best investment in my health .
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Indeed, Penny wise - pound foolish
 
Thank you so much for your responses and helpful advice. I'm definitely buying my own testing equipment. At the moment I'm snaffling a few of my husband's test strips (with his encouragement of course!) and already I'm discovering helpful information.

Day One. Fasting 5.9 breakfast 2 slices of toast 2 hours later 13.5.
Day Two Fasting 6.1 breakfast one slice of toast and scrambled egg 2 hours later 6.3

How would I be better off by NOT knowing that? Makes no sense to me at all but my doctor, who is the practice diabetic specialist, is adamant I'm better off in the dark, so I'll just have to shine my own light :-)
 
My GP would prefer me to test less, and has said so, but then also likes the spreadsheet and data I present her with my 4 or 5 daily test results. I informed her I would continue to self fund. I also take the 1 pot of strips every two months I'm allowed (for now).

My other point to her is, when she tells me it's a waste of money, is it's my health, my money, and it's less than I would have spent on food when I was eating more processed food, carbs and sugar. My practise nurse is much more of the "Whatever works for you,carry on doing it, because it's obviously working." school of thought. Her only comment has been she would prefer me to eat more carbs, but as she can see the clear results of not she's not arguing with me.
 
wiredwoman said:
Hello! Newly diagnosed about 5 months ago, (although I have been here before because my husband has had Type 2 for 15 years and we’ve benefitted greatly from the advice on this forum, thank you!)

On the day of my own diagnosis I was told not only that I wouldn’t be given a meter/test strips but that the doctor didn’t want me to test at all. Instead he would be giving me a ‘miracle’ drug (Empagliflozin) that ‘you will love’ because I would lose weight.

Fast forward 5 months and I have indeed lost weight, how much is due to the wonder drug is difficult to assess because I have also completely changed my lifestyle - low carbing and daily treadmill. The doctor on seeing my weight reduction was delighted with himself and the miracle drug and I had to remind him that I’d actually put in quite a lot of work myself! My HBAIC has reduced from 10.6 to 7.3. All going in the right direction except now that my weight has plateaued I really would like to test to see what spikes me. Would I be better eating a potato or a slice of wholemeal bread? How can I possibly know how I react to different foods and exercise when I’m not allowed to test. So on this visit I politely requested to be allowed to test and the response was interesting. At first I was told I don’t need to and when I mentioned NICE guidelines/lifestyle changes he said NICE can say what they like but they don’t have to manage his budget. I asked if this was a financial decision and he said “Yes, of course.” But later he said he would prefer to prescribe the expensive wonder drug at £40 a month (he could have given me a cheaper drug (Glimepiride) but I would have gained 10kg instead of losing it!) This drug is not recommended as a first step apparently but he is prepared to ignore the guidelines if he is passionate about an issue. Finally, when I pushed him on the decision to disallow testing being purely financial he said that was part of it but that every diabetic expert, and all the conferences he attends the consensus is that testing does not lead to better control.

So that’s my question. Is it true that diabetic experts believe that patients kept in the dark do better ultimately? It seems unlikely to me, but I’m open to being proved wrong. I really feel that I need to know what’s happening to my body, not to be obsessive about it but to understand what makes a difference. If I have to fund that myself then so be it but I’m confused after the conversation with my doctor as to the real reason why I shouldn’t do it.
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I had the same. I was told it was not necessary for me to test. I totally disagree. It is my body, my disease and I want to do what I can to manage it. Like you I wanted to test myself, after all, blood sugar can be affected not only by food, but also by stress, illness, exercise etc and I have the right to know what is going on in my body. I bought my own meter and strips and have done so for quite a while. I want to know what foods I can eat and which spike me. Although I try to stick to lchf most of the time, I have found that I can eat some rice (which I love) which does not cause as much of a spike as bread or potatoes for me personally, although this might not be the same for the next person. It is an expense, the strips are expensive but I feel I have no choice.
 
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AndBreathe said:
Having been told not to test, as I wouldn't understand the results, I bought my own supplies and got on with testing. Some time later, following a change of GP, due to a retirement, I had quite a "robust" conversation about this with my new GP. She was quite honest in saying budget couldn't deal with it, bearing in mind the numbers of T2s these days.

My feedback was that I, and so many others would feel better about things if an honest reason was given rather than a patronising, insulting "you won't understand the results" fib, without not even understanding anything about the patient's background. She agreed. We moved on.

As you know, interpreting test results is a little learning curve to begin with, but once upi have a grip of the basics, it's not rocket science.

I found testing was the single biggest breakthrough in understanding how my body works, and therefore learning what foods I could eat with extreme gusto, and which I really had to leave off, for some time at least.

Good luck with it all moving forward.
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Agree totally. I was told it is just not necessary to test "we don't want you to have the stress of testing - it isn't necessary, " Agree with what you say about testing being the biggest breakthrough - absolutely vital to my mind.
 
I was diagnosed 4 weeks ago and I haven't seen a doctor in 6 months. My Surgery nurse doing my new patient check up decided to do a full blood test and a doctor rang 2 days later asking me to pick up my prescription before the surgery closed. I know T2 patients do not get monitors so I bought one (the cheapest) but it has been absolutely invaluable in highlighting certain things.
My Metformin works and my BG has gone from between 11 and 12 (14.3 once) to between 6.5 and 8.1. I notice on days when I can force myself to walk anywhere it lowers my BG even more. And I have found certain foods that cause my BG to jump very quickly and drop slowly.

Seeing the benefit of what I do is a lot more encouraging than not knowing.
 
DavyG said:
I was diagnosed 4 weeks ago and I haven't seen a doctor in 6 months. My Surgery nurse doing my new patient check up decided to do a full blood test and a doctor rang 2 days later asking me to pick up my prescription before the surgery closed. I know T2 patients do not get monitors so I bought one (the cheapest) but it has been absolutely invaluable in highlighting certain things.
My Metformin works and my BG has gone from between 11 and 12 (14.3 once) to between 6.5 and 8.1. I notice on days when I can force myself to walk anywhere it lowers my BG even more. And I have found certain foods that cause my BG to jump very quickly and drop slowly.

Seeing the benefit of what I do is a lot more encouraging than not knowing.
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Welcome, and well done on your approach. Keep up the good work, we're all on a long road and every step counts:)
 
8 months on from my T2 diagnosis I would now be medicated if I had not tested routinely. If you can't measure it, you can't manage it. I continue to test and eat accordingly, have got my weight down and keep it down and no meds, with a consistent A1C of 29 compared to my original 59, the catalyst .....testing....the consistency effort and lifestyle change:)
 
I would add that one of the best things that testing has done for me was teaching me when to take my metformin. Initially I followed the directions until I increased to 3 x 500mg.

Then, I was taking 1 with breakfast 8.30 am 1 with lunch 12.30 pm and one with my evening meal 5.30 pm. Mid afternoon my BG could get as low as 5.8 but every morning it would be between 11 and 14. Realising that 15 hours between my last tablet one day and my first tablet the next day was too long, I try to space at least 6 hours between tablets. My mid afternoon BG has risen very very slightly but my a.m. BG has fallen dramatically. eating an apple or some bran between meals has made this easy to do.

At present I am testing pre breakfast and pre evening (late supper with last tablet) meals and keeping a log on a spreadsheet. But I am also testing before and 2 hours after certain meals in order to gain important information as to how my body reacts to different foods.... I can see my first thoughts about all similar foods having similar effects is completely wrong so I'm guessing that my body can absorb glucose quicker from some foods than similar foods.

This does involve keeping a log and testing more frequently in the beginning but I adamantly believe that diabetes is something that needs dynamic management and getting as much information as I can will help me to understand my body and work with my medication rather than against it.

Having spent over 15 years working in an NHS hospital I have seen the effects of diabetes when it is not managed effectively, and the cost to keep a person in hospital far exceeds the cost of monitoring. So cost is not a sufficient reason to deny monitors to all diabetics.

It has been a very steep learning curve for me, I started out as a deniabetic thinking the doctor must be wrong and I couldn't be diabetic or it was a one time high BG, then I went to the feeling isolated, lack of information, helpless stage. Then acceptance and wanting information. Reading threads on this forum and the input from so many others has made me feel better, given me insight and tips and even put a smile back on my face :) as well as confirming that testing is paramount to control.
 
DavyG said:
I was diagnosed 4 weeks ago and I haven't seen a doctor in 6 months. My Surgery nurse doing my new patient check up decided to do a full blood test and a doctor rang 2 days later asking me to pick up my prescription before the surgery closed. I know T2 patients do not get monitors so I bought one (the cheapest) but it has been absolutely invaluable in highlighting certain things.
My Metformin works and my BG has gone from between 11 and 12 (14.3 once) to between 6.5 and 8.1. I notice on days when I can force myself to walk anywhere it lowers my BG even more. And I have found certain foods that cause my BG to jump very quickly and drop slowly.

Seeing the benefit of what I do is a lot more encouraging than not knowing.
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I couldnt manage without testing regular.my gp didnt think I really needed to test but my diabetes nurse said I must (she was right and my gp apologised to me)how else are we to know what our bodies are doing? My tests are very high and ive never tested low.my gp is now getting me the help I need (I have eating issues) and I can honestly say hes really had a turn around and even rang me to ask my results today and its saturday,I live in a very small village (not even a shop) and I know my doctor cares.good luck to you x
 
Kyambala said:
I have an excellent Doctor who has never denied me test strips nor anything else. I am Type 2 on Insulin and my Doctor asked me "After you test do you adjust your medication in light of the test results". I replies "No". Then he said "Why do you test?" I had no answer.
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HE should be able to tell you why you test, and when to test. Do you drive - & test before you set out and at hourly intervals while driving? Is hourly frequent enough - only you know how your BG is affected. Do you carry emergency sugar? How long have you been on insulin? And how long T2?

On insulin you have immediate concerns - hypo or hyper - as well as needing to build up a pattern of diet/insulin/BG. You diabetic team (if such an entity exists) will be able then to give specific advice.
 
I have been seeing my average BG levels going down whilst sticking almost rigidly to low carb, then I was caught out and could not find anything to eat and ate two small sweet biscuits and my reading shot up to over 11. I would never have known just how much increase in my BG there is from quite small amounts of carb if not for the meter. With Christmas coming I really might have been tempted to eat more carb dense foods, but now I know I just can't do that and still keep my BG at reasonable readings.
 
Resurgam said:
I have been seeing my average BG levels going down whilst sticking almost rigidly to low carb, then I was caught out and could not find anything to eat and ate two small sweet biscuits and my reading shot up to over 11. I would never have known just how much increase in my BG there is from quite small amounts of carb if not for the meter. With Christmas coming I really might have been tempted to eat more carb dense foods, but now I know I just can't do that and still keep my BG at reasonable readings.
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It always seems a lot worse than it is when you first eat carbs again.
Your body simply forgets how to deal with them, and even non-diabetics hit high numbers.
If you do eat carbs again, after a few days you'll find what your real response it.
 
IanD said:
HE should be able to tell you why you test, and when to test. Do you drive - & test before you set out and at hourly intervals while driving? Is hourly frequent enough - only you know how your BG is affected. Do you carry emergency sugar? How long have you been on insulin? And how long T2?

On insulin you have immediate concerns - hypo or hyper - as well as needing to build up a pattern of diet/insulin/BG. You diabetic team (if such an entity exists) will be able then to give specific advice.
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Hello IanD. I think my Doctor was trying to tell me to adjust my Insulin according to my meter readings. To answer some of your questions: I have been Diabetic for about 20 years or more but it took 2 years to convince my previous Doctor that I was Diabetic. I have been on Insulin just over 4 years. I always test my blood before driving and if it is a long journey then every 2 hours on the journey. I keep my BG a little higher than normal when driving any long distance in case I am unable to get food at the 2 hourly intervals.

I also carry sweets in my pocket if I start to feel hungry to prevent my head feeling "fuzzy" due to liver activity.
 
IanD said:
Well spotted ! In correspondence with Diabetes UK I did ask if there was a T2 on the staff. Presumably not. A T1 responded:


He did NOT respond to my challenge:


IMO that refusal is disgusting - he has the experience that gives him satisfactory control, but refuses to share it with other T1s. He declines to help the other 91% who are at risk of complications.
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IanD, are you not aware what happens to some people who post details of their T1 treatment on the internet? Decades after diagnosis, I am complication free and very successful at managing my T1, despite also being on steroids. My physical performance exceeds 99.9% of my peers. Yet I won't be posting details of my unorthodox treatment. Last time I pointed out errors in a medical research paper, I was sued for defamation. In Australia, truth is not a defence. Neither is public interest.
I am currently being investigated by the medical board because one of my social media posts allegedly promoted an approach to diabetes with which doctors disagree.
If you take advice from a profession who use legal thuggery to ensure that their version of truth prevails, then it would not be surprising if your health outcomes are not as good as mine.
If you want frank and fearless advice, then you need to provide an academic or legal framework for that advice to be given without retribution.
 
wiredwoman said:
Hello! Newly diagnosed about 5 months ago, (although I have been here before because my husband has had Type 2 for 15 years and we’ve benefitted greatly from the advice on this forum, thank you!)

On the day of my own diagnosis I was told not only that I wouldn’t be given a meter/test strips but that the doctor didn’t want me to test at all. Instead he would be giving me a ‘miracle’ drug (Empagliflozin) that ‘you will love’ because I would lose weight.

Fast forward 5 months and I have indeed lost weight, how much is due to the wonder drug is difficult to assess because I have also completely changed my lifestyle - low carbing and daily treadmill. The doctor on seeing my weight reduction was delighted with himself and the miracle drug and I had to remind him that I’d actually put in quite a lot of work myself! My HBAIC has reduced from 10.6 to 7.3. All going in the right direction except now that my weight has plateaued I really would like to test to see what spikes me. Would I be better eating a potato or a slice of wholemeal bread? How can I possibly know how I react to different foods and exercise when I’m not allowed to test. So on this visit I politely requested to be allowed to test and the response was interesting. At first I was told I don’t need to and when I mentioned NICE guidelines/lifestyle changes he said NICE can say what they like but they don’t have to manage his budget. I asked if this was a financial decision and he said “Yes, of course.” But later he said he would prefer to prescribe the expensive wonder drug at £40 a month (he could have given me a cheaper drug (Glimepiride) but I would have gained 10kg instead of losing it!) This drug is not recommended as a first step apparently but he is prepared to ignore the guidelines if he is passionate about an issue. Finally, when I pushed him on the decision to disallow testing being purely financial he said that was part of it but that every diabetic expert, and all the conferences he attends the consensus is that testing does not lead to better control.

So that’s my question. Is it true that diabetic experts believe that patients kept in the dark do better ultimately? It seems unlikely to me, but I’m open to being proved wrong. I really feel that I need to know what’s happening to my body, not to be obsessive about it but to understand what makes a difference. If I have to fund that myself then so be it but I’m confused after the conversation with my doctor as to the real reason why I shouldn’t do it.
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My diabetic nurse just told me to go away and eat healthy meals .I got myself a code 3 meter from amazon and have been testing loads it's help me to work out what affects my BG levels.
 
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