Have you been told not to test your blood sugars?

Casbow

Newbie
Messages
1
Type of diabetes
Type 2
I am having trouble getting testing strips. My nurse said with Type 2 I don't need to test, and that Mid Essex don't give testing strips on prescription. I have had a bad episode about 4 years ago. My Blood sugars were 0.3. I got up from bed this particular morning and came downstairs to start breakfast. The only symptom I felt was just a little lightheaded. So just thought I test my BS. Was surprised at 0.3. I called NHS direct and spoke to them, in fact they were amazed I was talking to them. They asked my not to put the phone down. I had taken Lucozade, two large spoons of sugar prior to calling them but it didn't appear to improve. They called ambulance, I still felt just lightheaded and a little dizzy. Ambulance arrived again very surprised I answered the door. I asked him to test on his machine and it had only gone up to 0.7. Both our machine tested the same, so it was not my machine. I was transported to hospital and kept there for a week, starving me and only on water. By the end of week it had only gone to 3.6. They said they need the bed and that they think it was due to my fibromyalgia. The point of this is that I hardly had any symptoms and it was so dangerously low, if I had tested it with my testing strips I wonder what would have happened. I am still trying to get my strips. Not a happy bunny.
 

Lord Midas

Well-Known Member
Messages
148
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
Idiots. Morons. Flat Earthers. Religious fanatics. Trump. Bigots. Misogynists. And other assorted bad types.
I am having trouble getting testing strips. My nurse said with Type 2 I don't need to test, and that Mid Essex don't give testing strips on prescription. I have had a bad episode about 4 years ago. My Blood sugars were 0.3. I got up from bed this particular morning and came downstairs to start breakfast. The only symptom I felt was just a little lightheaded. So just thought I test my BS. Was surprised at 0.3. I called NHS direct and spoke to them, in fact they were amazed I was talking to them. They asked my not to put the phone down. I had taken Lucozade, two large spoons of sugar prior to calling them but it didn't appear to improve. They called ambulance, I still felt just lightheaded and a little dizzy. Ambulance arrived again very surprised I answered the door. I asked him to test on his machine and it had only gone up to 0.7. Both our machine tested the same, so it was not my machine. I was transported to hospital and kept there for a week, starving me and only on water. By the end of week it had only gone to 3.6. They said they need the bed and that they think it was due to my fibromyalgia. The point of this is that I hardly had any symptoms and it was so dangerously low, if I had tested it with my testing strips I wonder what would have happened. I am still trying to get my strips. Not a happy bunny.
OMG! That's incredible. Thank goodness you came out ok. I've never have an issue repeat ordering test strips. Disk to you go and get them on an online order.
 

Cinderella56

Member
Messages
8
Type of diabetes
Type 2
Hi

I asked the DSN if I could test .. she said No it would only upset you??? So I took no notice ( always liked to be a rebel) and got the SD code free and have found out what I can and cant eat through testing after meals and my blood sugars are not too bad at all most of the time so am hoping this will be reflected in the hba1c I have to have on Monday. As for the EATWELL plate.. low fat lots of carbs.. I don't think so! When I tried to say to the dietician that a lot of carbs spiked my blood sugars she said what do you mean spiked.. so I said goes up too high ( she had said at the beginning of the lecture that optimal blood sugars were between 4 and 8 after meals) she then said everyones blood sugar goes up after meals we don't worry unless its over 12. WHAT? So glad I found this forum and the other Uk forum and Gretchen Becker and David Cavans books.. I am educating myself.
 

Bon83

Well-Known Member
Messages
292
Type of diabetes
Type 1
Treatment type
Insulin
Hi

I asked the DSN if I could test .. she said No it would only upset you??? So I took no notice ( always liked to be a rebel) and got the SD code free and have found out what I can and cant eat through testing after meals and my blood sugars are not too bad at all most of the time so am hoping this will be reflected in the hba1c I have to have on Monday. As for the EATWELL plate.. low fat lots of carbs.. I don't think so! When I tried to say to the dietician that a lot of carbs spiked my blood sugars she said what do you mean spiked.. so I said goes up too high ( she had said at the beginning of the lecture that optimal blood sugars were between 4 and 8 after meals) she then said everyones blood sugar goes up after meals we don't worry unless its over 12. WHAT? So glad I found this forum and the other Uk forum and Gretchen Becker and David Cavans books.. I am educating myself.
As a type 1 diabetic I am allowed a machine and testing strips. But I regularly have prescription requests for strips and needles rejected. I am only allowed to have enough to test blood sugar 4 times a day and do an injection 4 times. I constantly worry about strips because if you drive it's imperative to test. I am going to tackle this issue as I am trying to do some carb counting and need to test more. But if I'm honest I don't have the energy and may just buy some.
 

katmcd

Well-Known Member
Messages
90
Type of diabetes
Type 1
Treatment type
Insulin
As a type 1 diabetic I am allowed a machine and testing strips. But I regularly have prescription requests for strips and needles rejected. I am only allowed to have enough to test blood sugar 4 times a day and do an injection 4 times. I constantly worry about strips because if you drive it's imperative to test. I am going to tackle this issue as I am trying to do some carb counting and need to test more. But if I'm honest I don't have the energy and may just buy some.
Don't give in and just buy more, you are entitled to have enough test strips to live daily life normally and safely. Find out who rejects the request. It should be the GP and no one else. If its someone else, gave a word with the practice manager. If its the GP then either ask for a different GP or organise a med review.
I test at least 7 times per day. More if I go to the gym. And even more if I'm driving a lot. I end up with 250 strips per month. I can justify them all so they weren't bothered about prescribing that many.
It will make more work for them if you ask for a repeat every week because they don't prescribe enough than if they do a decent amount to start with. It's a waste of their time and money if they insist on drip feeding you test strips and, if nothing else, this doesn't make sense.
A written complaint if it doesn't resolve is always more powerful than a verbal one. They have set rules on what to do with a written complaint, they'll want to avoid one if they can. A helpful letter from your diabetes team might work in your favour- could your DSN be contacted to facilitate one being sent?

Hope it gets solved soon. I stress so much about prescriptions (all new to me) and mine have ended up being fairly straightforward!
Kat
 
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Bon83

Well-Known Member
Messages
292
Type of diabetes
Type 1
Treatment type
Insulin
Don't give in and just buy more, you are entitled to have enough test strips to live daily life normally and safely. Find out who rejects the request. It should be the GP and no one else. If its someone else, gave a word with the practice manager. If its the GP then either ask for a different GP or organise a med review.
I test at least 7 times per day. More if I go to the gym. And even more if I'm driving a lot. I end up with 250 strips per month. I can justify them all so they weren't bothered about prescribing that many.
It will make more work for them if you ask for a repeat every week because they don't prescribe enough than if they do a decent amount to start with. It's a waste of their time and money if they insist on drip feeding you test strips and, if nothing else, this doesn't make sense.
A written complaint if it doesn't resolve is always more powerful than a verbal one. They have set rules on what to do with a written complaint, they'll want to avoid one if they can. A helpful letter from your diabetes team might work in your favour- could your DSN be contacted to facilitate one being sent?

Hope it gets solved soon. I stress so much about prescriptions (all new to me) and mine have ended up being fairly straightforward!
Kat
Thanks so much for the advice - I will try speaking to someone at the practice. I just dread a confrontation
 
Messages
2
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Yes when I picked up my prescription this week I was asked point blank. " Is it really necessary for you to test twice a day? Your'e only type 2 after all !!" I reacted straight away and said "I said yes it was just as necessary for me and others with Type 2 Diabetes to test so that we can regulate our food intake ! Inside I felt this was an attempt to get me to give up testing so the NHS could save money !! I did actually say as much too her and she said no but I'm a Doubting Thomas and I felt it was !.
Same reaction when I attended surgery Diabetic Clinic last week, "Oh, you're only type II, no need to test". I always used to test and get test strips on prescription. How safe is it for me not to test regularly?
 

derry60

Well-Known Member
Messages
1,196
Type of diabetes
Prediabetes
Treatment type
Diet only
Dislikes
Rudeness,people being unkind
I WAS ACTIVELY discouraged by my GP from testing my blood glucose, AND from trying to fix my type 2 diabetes , e.g. with the diet from Prof Taylor of Newcastle on Tyne . I DID IT ANYWAY. Fixed myself . It would NOT have been possible without my regular blood testing, which gave me valuable reassurance that I was on the right path. I had to do it all myself ; researching the calorie requirements, learning about sugar and fat metabolism and the low carb ideas, and even spending time worrying WHICH meter to buy. All this done in a panic that I had been diagnosed without warning.
When I was '' prediabetic '' I got vague info and conflicting advice and was left thinking my chance of developing full diabetes was minimal. Disgusting really. I got reassurance instead of dire warnings.
A life threatening or at least life changing disease and they hardly cared what I did.
The whole system is a shambles and a shocking disgrace - they are teaching the type 2 and pre diabetics ' Planned Helplessness' trying to turn everyone into an acquiescent submissive ' patient on the slippery slope of irreversible illness ' Scandalous lack of care.



Well, I am prediabetic and my letter came with a warning from my GP after my blood test "Your BGL are very high and you are in serious danger developing diabetes if you do not act now" Well that was a warning enough for me, even if they did not tell me how to act. I did my own research and also found this forum, within two weeks of receiving the letter. I have also recieved a letter asking me to attend the long terms health conditions unit, and have an appointment next month. So far the letter that I received scared me, to be honest, no way did I take it lightly. If a nurse told me that there is a high chance that I will not develop diabetes, I would shove that letter in her face lol
 

Bangor72

Newbie
Messages
4
I moved to France shortly after diagnosis and my dr told me I didn't need to test. Diagnosis was in 2012 and the diabetes has been controlled by metformine.
However after a few days with the same symptoms I had at diagnosis : unquenchable thirst, going to the loo multiple times before bed & during the night along with a sharp decline in eyesight I've just tested myself - 27.2. And this is despite a normal Ha1bc in the last month.
Off to the pharmacy in the morning to see if I can get tested there like you can in the UK.
 

kimlala

Well-Known Member
Messages
98
This is not about whether the NHS should, or can afford to, provide test strips on a permanent or temporary basis to non-T1 diabetics. Having read #EveryCloud ’s post, and so many more like it over the years on this forum, I wonder whether we could gather together examples of Healthcare Professionals who have told people that it is either unnecessary or just plain wrong to test their blood sugars. It is a scandal that needs highlighting.
My doctor me I was making myself crazy with testing and diet. Insurance refused my request for extra strips for my OneTouch Ultra2. I was expected to test 3 times a day (this is absurd, considering I am fairly newly diagnosed). I purchased a cheaper monitor with cheaper strips, ReliOn, and spent a week checking accuracy. Both were spot on. I refuse not to test.:)
 

Robbity

Expert
Messages
6,683
Type of diabetes
Type 2
Treatment type
Diet only
My DN initially told me it wasn't necessary to test. After I'd joined the forum, "seen the light" and started testing, I discussed with my GP and he's quite happy for me to test, but he's told me that he's not allowed to prescribe test strips as our practice policy (AKA I suspect as"cost cutting") doesn't permit him to do so.

For me and many others, testing is a vital part of our diabetes management and control, whoever may be footing the bill.

Robbity
 
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Messages
19
Type of diabetes
Type 2
All I can say on the matter of testing yourself is to not get too hung up on it. Record your data over a week or two but don't radically change too much as you could easily end up not consuming enough calories and it isn't the right thing to do long term. Get yourself a balanced diet that you can stick to of around 1800 - 2000 calories, 1200 calories per day is too low. Do the higher calories with a lot more exercise and you will get there. Don't try and fix yourself in record time as it is not all about weight loss and a low hba1c. I was 14.5 stone in December with a hba1c of 58 and was really quite fit and muscular with a big gut and most of all I was pretty happy with life, tried to fix diabetes with diet alone and got down to hba1c of 44 within 4 weeks and 84kg, by middle of February I was down to 78kg . Sounds great until I seen pictures of myself and realised how skinny I had gone. Trying to stop yourself from eating too little can be a hard habit to break. I am now a shadow of my former self as when trying to put some weight back on I've ended up eating more meat and fat to get the calories down me without raising my hba1c. I should have just binged on carbs as I have sent my blood pressure up to over 150/90 and have really f****ed up. My diabetes
Please don't go down the bacon and eggs route every day or eggs and avocado as they will definitely have an effect on your heart health even though your cholesterol will go down and your liver function will be looking good, your arteries won't be doing so well. I wouldn't recommend peanut butter to satisfy your hunger either, well maybe once or twice but it is difficult at the time to realise how much damage you could be doing to yourself in a short period of time.

Please save yourself from some of the mad focussed suggestions and just be patient, Aah if only I could have posted this information to myself before I started I would be looking forward to every day as I used to instead of every day being a nightmare and fighting hard to retain my sanity.
 
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Messages
9
Type of diabetes
Type 2
I was diagnosed with diabetes a few weeks ago. When I was at my appointment the Dr said nothing about testing. Diabetes runs in my family so I'm aware of the need for testing, so I called the VA (Veterans Administration, yes I'm American. Hope y'all don't mind a Yankee hangin around.) to request one and was told most noninsulin t2's don't get meters, but after some haggling I got one with a few strips. Now I'm working on getting them to send me more strips. I don't understand the thinking behind telling t2's they don't need to test. How is a person supposed to know if their by is where it should be or not. You certainly can't go by how you feel. I felt fine when I was diagnosed. My fasting sugar was 346. Smdh, bureaucrats!
 
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kimlala

Well-Known Member
Messages
98
I was diagnosed with diabetes a few weeks ago. When I was at my appointment the Dr said nothing about testing. Diabetes runs in my family so I'm aware of the need for testing, so I called the VA (Veterans Administration, yes I'm American. Hope y'all don't mind a Yankee hangin around.) to request one and was told most noninsulin t2's don't get meters, but after some haggling I got one with a few strips. Now I'm working on getting them to send me more strips. I don't understand the thinking behind telling t2's they don't need to test. How is a person supposed to know if their by is where it should be or not. You certainly can't go by how you feel. I felt fine when I was diagnosed. My fasting sugar was 346. Smdh, bureaucrats!
@Allthisjusttochat, One word Yankee, Walmart! I'm in Texas and have had a fight with our insurance and doctor for testing strips! I have a OneTouch Ultra2 and extra strips are outrageously expensive. I was only supposed to test 3 times/per day, and this didn't sit right with me as my levels were all over the place (getting better now that I can see, by testing, what actually affects my levels) . Accidentally, I found a whole diabetic area in Walmart. Purchased a cheap meter and cheap strips (ReliOn Prime--$9.00). Went home and tested with both for a week, both almost always showed the same number (a few times ReliOn was a little higher) Now, I test as many times as I want. Test as much as you can, and record, this really made a difference for me (long, long story, but didn't trust doctor's diagnosis) . :)
 
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pleinster

Well-Known Member
Messages
1,631
Type of diabetes
Type 2
Treatment type
Diet only
Dislikes
ignorance
All I can say on the matter of testing yourself is to not get too hung up on it. Record your data over a week or two but don't radically change too much as you could easily end up not consuming enough calories and it isn't the right thing to do long term. Get yourself a balanced diet that you can stick to of around 1800 - 2000 calories, 1200 calories per day is too low. Do the higher calories with a lot more exercise and you will get there. Don't try and fix yourself in record time as it is not all about weight loss and a low hba1c. I was 14.5 stone in December with a hba1c of 58 and was really quite fit and muscular with a big gut and most of all I was pretty happy with life, tried to fix diabetes with diet alone and got down to hba1c of 44 within 4 weeks and 84kg, by middle of February I was down to 78kg . Sounds great until I seen pictures of myself and realised how skinny I had gone. Trying to stop yourself from eating too little can be a hard habit to break. I am now a shadow of my former self as when trying to put some weight back on I've ended up eating more meat and fat to get the calories down me without raising my hba1c. I should have just binged on carbs as I have sent my blood pressure up to over 150/90 and have really f****ed up. My diabetes
Please don't go down the bacon and eggs route every day or eggs and avocado as they will definitely have an effect on your heart health even though your cholesterol will go down and your liver function will be looking good, your arteries won't be doing so well. I wouldn't recommend peanut butter to satisfy your hunger either, well maybe once or twice but it is difficult at the time to realise how much damage you could be doing to yourself in a short period of time.

Please save yourself from some of the mad focussed suggestions and just be patient, Aah if only I could have posted this information to myself before I started I would be looking forward to every day as I used to instead of every day being a nightmare and fighting hard to retain my sanity.

Informative..but we all differ. Any statement about how many calories a person should eat is far too general. I am absolutely fine on under 1500 calories a day and, like many people on this site, have my diabetes under control through a low carb diet (without meds). Weight has never been an issue for me as it came down a bit and settled because my diet is not ridiculous (eg. only eggs and bacon every day). There are loads of low carb foods to eat. Testing before and two and half hours after food is the only way to see what impact certain foods have on you and what progress you are making. My diabetes was caused by steroids following a transplant...and my blood is tested very regularly as I see specialists every few weeks (sometimes more often)...the renal specialists, my diabetes consultant and a dietitian are all happy with my approach (and with my recorded diet breakdown of calories, carbs, fats, proteins, fibre etc). The issue is, I agree, eating too little. Note that we all use up different amounts of energy and are different shapes and sizes and that small amounts of certain foods can contain a lot of calories, whereby large amounts of rubbish may contain less. There is no one-size-fits-all solution...but cutting carbs while ensuring you are eating adequately and testing to identify spikes/progress in blood sugar is both effective and perfectly healthy.
 

kimlala

Well-Known Member
Messages
98
All I can say on the matter of testing yourself is to not get too hung up on it. Record your data over a week or two but don't radically change too much as you could easily end up not consuming enough calories and it isn't the right thing to do long term. Get yourself a balanced diet that you can stick to of around 1800 - 2000 calories, 1200 calories per day is too low. Do the higher calories with a lot more exercise and you will get there. Don't try and fix yourself in record time as it is not all about weight loss and a low hba1c. I was 14.5 stone in December with a hba1c of 58 and was really quite fit and muscular with a big gut and most of all I was pretty happy with life, tried to fix diabetes with diet alone and got down to hba1c of 44 within 4 weeks and 84kg, by middle of February I was down to 78kg . Sounds great until I seen pictures of myself and realised how skinny I had gone. Trying to stop yourself from eating too little can be a hard habit to break. I am now a shadow of my former self as when trying to put some weight back on I've ended up eating more meat and fat to get the calories down me without raising my hba1c. I should have just binged on carbs as I have sent my blood pressure up to over 150/90 and have really f****ed up. My diabetes
Please don't go down the bacon and eggs route every day or eggs and avocado as they will definitely have an effect on your heart health even though your cholesterol will go down and your liver function will be looking good, your arteries won't be doing so well. I wouldn't recommend peanut butter to satisfy your hunger either, well maybe once or twice but it is difficult at the time to realise how much damage you could be doing to yourself in a short period of time.

Please save yourself from some of the mad focussed suggestions and just be patient, Aah if only I could have posted this information to myself before I started I would be looking forward to every day as I used to instead of every day being a nightmare and fighting hard to retain my sanity.
All I can say on the matter of testing yourself is to not get too hung up on it. Record your data over a week or two but don't radically change too much as you could easily end up not consuming enough calories and it isn't the right thing to do long term. Get yourself a balanced diet that you can stick to of around 1800 - 2000 calories, 1200 calories per day is too low. Do the higher calories with a lot more exercise and you will get there. Don't try and fix yourself in record time as it is not all about weight loss and a low hba1c. I was 14.5 stone in December with a hba1c of 58 and was really quite fit and muscular with a big gut and most of all I was pretty happy with life, tried to fix diabetes with diet alone and got down to hba1c of 44 within 4 weeks and 84kg, by middle of February I was down to 78kg . Sounds great until I seen pictures of myself and realised how skinny I had gone. Trying to stop yourself from eating too little can be a hard habit to break. I am now a shadow of my former self as when trying to put some weight back on I've ended up eating more meat and fat to get the calories down me without raising my hba1c. I should have just binged on carbs as I have sent my blood pressure up to over 150/90 and have really f****ed up. My diabetes
Please don't go down the bacon and eggs route every day or eggs and avocado as they will definitely have an effect on your heart health even though your cholesterol will go down and your liver function will be looking good, your arteries won't be doing so well. I wouldn't recommend peanut butter to satisfy your hunger either, well maybe once or twice but it is difficult at the time to realise how much damage you could be doing to yourself in a short period of time.

Please save yourself from some of the mad focussed suggestions and just be patient, Aah if only I could have posted this information to myself before I started I would be looking forward to every day as I used to instead of every day being a nightmare and fighting hard to retain my sanity.
 

kimlala

Well-Known Member
Messages
98
@determined45yearold, I was never overweight, sometimes I was a little on the boney side. Have been since I was a child, mom blamed it on my inability to sit still (I was a difficult one, still am). lol Diabetes was the furthest thing we could ever imagine that I would have. We rarely eat out, as I am strongly against GMO's and fake food, artificial colouring (due to children having food sensitivities, some 20 years-ago), gluten free for 10 years (other health issues). As you can imagine I have had to watch everything I put in my families mouth, for various reasons. When diagnosis of diabetes came last November, I looked like a dancing skeleton. After hospitalization I thought I could fix it with diet, low carb high protein. I didn't really test as frequently, because doctor told me not to worry. It wasn't until a root canal in April that sent me spiraling out and dropping 10 lbs. in 2 days, that the thought came to me that something was wrong. That is when I started testing more than 3 times a day, and my results were all over, dipping into the 40's because I was back on insulin. Diet can helps many, turns it around, and I wanted to be one of those, I didn't want to take insulin or any meds. However, as I have just learned; due to my keeping track of everything I eat, levels, and many, many tests (really, I am my own science experiment. lol) the doctor made the wrong diagnosis, I am a type 1/LADA. I advocate testing, how else can you know, unless you want to wait until something dreadful happens.

PS. forget the peanut butter and go with almond butter! :)
 
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sasharhianna93

Well-Known Member
Messages
52
Type of diabetes
Type 2
Treatment type
Tablets (oral)
My doctor said to only test once a day, or just to test whenever I am feeling out of it. Why would they not want people to test!?
 

pleinster

Well-Known Member
Messages
1,631
Type of diabetes
Type 2
Treatment type
Diet only
Dislikes
ignorance
My doctor said to only test once a day, or just to test whenever I am feeling out of it. Why would they not want people to test!?

Hiya. The reason they normally give is that people might get stressed if their readings are high. My response would be that that is for the patient/"client" to decide. The real reason (though I am sure some would debate it) is that the meters and the strips cost money...and if every Type 2 was prescribed these things it would add up to a huge amount of money. So, in brief - it is to ease pressure on budgets. That is also the expressed view of my own doctors. There is no medical reason to not test. Further, many of us here maintain that it is the only way to really get your levels under control with any degree of certainty that your approach is effective. I tested up to 8 times a day in the first two months or so after diagnosis. That armed my with information I needed to identify which foods were bad fro my own levels. It also let me identify a spike caused by a prescribed drug I was taking and the lack of impact of the meds for diabetes I was on. As a result of this information, I was able to easily talk my doctors into reducing the drug and to to stop the meds for diabetes and focus purely on diet. I now test in the morning and before and two hours after my main meal. Sometimes I don't bother. It is worth noting, that if you make progress with your diet, seeing levels getting lower on your meter is not only stress reducing...it is empowering.
 
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