Have you been told not to test your blood sugars?

[Andydragon]

But do they give a reason? And why not for insulin takers; I do wish medical professionals had the time to be more specific.

Appreciate erring off topic a little so let’s be careful but in the context of why told not to test, it is linked towards the same issue, what the guidelines tell doctors to do. Remember they are general practitioners and not experts usually (some exceptions where dr are diabetic specialists, if you are lucky at your practice)

In general in the UK it’s because it’s NICE guidelines and rules. Probably a cost measure (whole different argument there but let’s not!). Doctors are led by the guidelines, funded and controlled. There may be some leeway, I’ve never really checked, but in general control of what can be prescribed isn’t down just to the doctor

it’s also not just insulin takers though, it should be any drug that has a hypo risk and there are some of course not insulin. Whether that’s a matter of course or something you need to fight for though is a different matter

 

[Outlier]

error

 

[ErinKeegan]

I think healthy people should not be told what to do and what not to do to people with diabetes

 

[Zilsniggy]

Yes, I am often told not to test but am able sometimes to get a prescription for the strips. These days they are not too much more on Amazon so I mostly buy them there. Recently I mentioned to the nurse that my fasting blood glucose had been gradually rising and she said "Well don't test it then, that will solve the problem!" I was unable to find an answer to that level of stupidity

Highlights part of the issue: not every nurse that you see in a GP surgery is qualified as a Specialist Diabetes Nurse. Fewer and fewer are qualified to a high enough degree. I'm afraid a 2 day course doesn't qualify a nurse as a Specialist......and these are the people who are meant to advise us!

 

[Deleted member 556660]

I wasn't given any advice either way - and thought that the only way I could check at all was to buy my own stuff, which I have. Can't decide if it's made me more paranoid or not at the moment,

 

[jjraak]

I wasn't given any advice either way - and thought that the only way I could check at all was to buy my own stuff, which I have. Can't decide if it's made me more paranoid or not at the moment,

A good choice, imho

As for benefit or not, i guess it's who we are that matters

And I think anyone coming on here, and buying their own meter, probably has the sense to want to know 'more' and can handle information on a daily basis,

Information that is still given to EVERYONE, ............eventually.

Including those not interested or more likely ( and so easy to choose,) popping their head in the sand & hoping for the best.

Except that what we get daily (BG Levels)
gives us an opportunity,, should we take it, to amend our diets at first chance

An opportunity not afforded if you rely on that 3/6 month or yearly HBA1C, (time, location dependent)

I say given the choice of ourselves or our children feeling unwell to be able to check if we/they have a raised temperature today by using a thermometer
Versus waiting until we/they might be in serious distress with a fever..

a clear winner between those two for me.

I think you'll balance this out, nicely
Knowledge IS Power.

And in this forum there is a Vast store of knowledge.
All freely given when asked

 

[Deleted member 556660]

A good choice, imho

As for benefit or not, i guess it's who we are that matters

And I think anyone coming on here, and buying their own meter, probably has the sense to want to know 'more' and can handle information on a daily basis,

Information that is still given to EVERYONE, ............eventually.

Including those not interested or more likely ( and so easy to choose,) popping their head in the sand & hoping for the best.

Except that what we get daily (BG Levels)
gives us an opportunity,, should we take it, to amend our diets at first chance

An opportunity not afforded if you rely on that 3/6 month or yearly HBA1C, (time, location dependent)

I say given the choice of ourselves or our children feeling unwell to be able to check if we/they have a raised temperature today by using a thermometer
Versus waiting until we/they might be in serious distress with a fever..

a clear winner between those two for me.

I think you'll balance this out, nicely
Knowledge IS Power.

And in this forum there is a Vast store of knowledge.
All freely given when asked

The really annoying thing is that back in 2019, I had prediabetes. No-one told me it could develop into something else. they just said I needed to get the sugars down. So back after 3 months, had another test - docs didn't ring with results. I rang them, and they said it was all OK, and they would only contact me if there was a problem. So, in my head, that was it, and I carried on as normal. If only I'd known, if only I'd known to ask.... if only they'd given me the support and information at the time..... I'm so angry about that part..... Just have to get on with things now.....

 

[jjraak]

How very annoying @DianeSedd .

From so much I have read and seen on here & my own experiences, the GP Surgeries & other HCP (health care professionals) do seem to have a very 'Elastic' version of what is 'OK' .

While many are now moving with the times, far too often, it is as you describe, pitifully inadequate.

And wasteful on so many levels.

But as you realise now, it is what it is.
So all we can do, is let's do better from this point on.

It's not necessary, but I have taken much more note of my blood results, since DX, and I would suggest any T2D should really ask for ALL their blood test results, to keep safe for reference, and make note certainly of the LDL HDL Triglycerides ..and Cholesterol.
(Others can also be a good guide to health improvements and worth a little while googling, imho )

My recheck over a decade of my bloods results (once I was diagnosed ) had my trigs up at 6.2..near 8 years pre DX.

An horrendous score, yet no one mentioned it.
And thinking back, it's a reasonable indicator something was wrong, yet I too was 'OK'.

A spell in hospital over last Christmas (traffic accident ) left me plenty of time to chat to other patients in ward (4 bed bay) who I found out were also T2D, and very unaware of condition management or implications.

Eating all sorts and when checked by nurses, happily told all was ok, when scores were hovering around 10-15..

We all chatted,, one chap was getting quite distressed as he kept scoring 16+ most meals, and insulin injections got mentioned.

after a little advice and despite the NHS Food lottery for T2D'S, they all had better management over the next few week or so, just by better food choices .

It was difficult, it was all major injuries, but even with all my meds etc I kept below 9 throughout my stay ..and ate well.

Hence my " knowledge is power "

I too was angry at how casually I was treated.

I personally am wiser because of this forum, but I does seem the majority, rightly or wrongly are happy not looking deeper and just being ok doing what they are told by doctors.
I know I was pre DX.

So I guess despite how unfair it seems, it's easy for GP's see us all the same ?

Now, I'm a little wiser, I hope

And in terms of T2D,
I'm less of the new car owner, driving without checking all's ok & then horrified the engine lights come on or smoke is billowing from under the bonnet...

These days , thanks to the forum, I do feel like I have been given an owners manual to flick through, for tips & guidance.

I was late to the Game..
It took the shock of being DX'd as T2D for me to change.

My aim & hope now is to get a smoother ride, then those less willing to spend a little time learning about what works/doesn't work with these magnificent bodies gifted to us, to transport us through life .

And so far, I feel I'm doing a proper 'OK'.

Good luck on your journey.
X

 

[valann]

I can't believe this has been going on for so long!
When I was first diagnosed about 12 years ago we lived about 20 miles away in a rural location and had a great GP practice. The first thing they did was give me a full test kit, showed me how to use it and added a huge pile of papers to read (never did get through that pile). They actually treated me as a whole person but then again they did actually see me develop my other medical conditions, but never really made a big thing about T2d. I did say they were great not perfect!

Then 4 years ago we moved here to Doncaster to be near our son so had to change GP. First thing they said to me was to bin the meter, not to test anymore as those things aren't accurate at all and they had a test that is and they would do it every 3 months. When I asked how would I know what my body and bloods were doing without testing I got told they would keep me totally informed. They didn't let me know much for the first few months then my HBA1C came back at 120 something, then they got in touch and tried me on Metformin which they tell me I'm allergic to so tried another tablet but can't remember the name. Then they tried me on Canagliflozin 100mg 1 each morning, then earlier this year HBA1C came down to 98 only so they upped my dose to 300mg per day. In June they informed me HBA1C has come down to 68 that I need more tablets and an injectable. They have refused me a meter every time I have asked for one. Told to never skip breakfast, to have wheetabix or porridge, wholemeal bread, margarine only and no fatty meat but lots of any veg but no meter. That's when I found this forum, bought a machine and test strips and can see my blood results get lower on the low carb diet.
Surely encouraging us to test before meals and two hours after is in their best interest, we can spot a problem and get help and they can still do their 3 month tests. I feel that would keep patients happier, and end up saving the NHS money. One thing that still puzzles me is why do they still finger prick day and night in hospital if it's not accurate? Well they did just under 3 years ago last time I was admitted.

 

[EllieM]

One thing that still puzzles me is why do they still finger prick day and night in hospital if it's not accurate?

Well, as a T1, finger pricks are accurate enough for me to dose from.
To be fair, I suspect they mean that they don't think that sporadic finger prick tests give them an accurate picture of your levels, as they can miss highs and lows. Of course, you could then suggest that they fund a cgm instead , but I suspect that that would not do you much good.

But honestly, they are just repeating the advice given to them by NICE, so I think you need a view change from higher up in the medical chain. And I guess you can argue that blood tests aren't useful if it doesn't cause people to modify their behaviour/diet?

Surely encouraging us to test before meals and two hours after is in their best interest, we can spot a problem and get help and they can still do their 3 month tests. I feel that would keep patients happier, and end up saving the NHS money.

I think you are preaching to the converted here.

I am glad you are doing blood tests again and are finding that you can use them to reduce your levels.

 

[david4503]

This whole thread (at least the part I’ve read) would seem to stick a pin in the balloon full of notions that socialized medicine gets the money motive mostly out of practicing medicine. As far as I can tell, advising a patient with a blood sugar problem, usually diabetes, never to test is at least 90% about tightfistedly saving money (although I’m sure it actually costs the NHS more in the long run).

Step 1 in fixing this testing problem might just be getting a consensus that NHS policy is nakedly sacrificing patient health very unwisely and for the sake of money. Really, talk about the nasty profit motive in the U.S. healthcare system. This doesn’t sound any better.

 

[HSSS]

This whole thread (at least the part I’ve read) would seem to stick a pin in the balloon full of notions that socialized medicine gets the money motive mostly out of practicing medicine. As far as I can tell, advising a patient with a blood sugar problem, usually diabetes, never to test is at least 90% about tightfistedly saving money (although I’m sure it actually costs the NHS more in the long run).

Step 1 in fixing this testing problem might just be getting a consensus that NHS policy is nakedly sacrificing patient health very unwisely and for the sake of money. Really, talk about the nasty profit motive in the U.S. healthcare system. This doesn’t sound any better.

I agree that short term money saving cost the patient and nhs more in the long term, to a point . However I genuinely believe that it is even more about ignorance and the **** dietary guidelines the western world has.

Drs, nurses and dieticians are taught that testing is to avoid hypos and dose calculations for drugs like insulin. They are unaware of how to use it for food suitability (or activity) testing; and even if they even if they were they are also ignorant in their education of just what a type 2, on no or limited first line medications, can do about it anyway as they are taught to stick rigidly to the eatwell/food pyramid and demonise all fats whilst promoting glucose raising carbs.

There have been also a few over relied on studies showing anxiety can result from testing but again that’s largely because it’s pointless testing (fasting only for example or worse random) that teaches the person with diabetes nothing useful to actually act on.

A fundamental change right from the beginnings of medical education is required as well as long term financial planning. They only have to look to the practices who have moved past the historic progressive, solely drug managed thinking to see how incredibly effective a lower carb, personalised testing option can be. Rant over.

Edit the starred out word was actually a beaver’s home and nothing deserving of auto censorship, though it really could and probably should have been much stronger.

 

[david4503]

That may be a rant but it’s an interesting one. You’re telling me that the NHS doesn’t promote at least a reduced-carb diet for Type 2s like you? That’s almost as shocking as telling a Type 2 not to test. I really don’t know how to make head or tail of it. True, I know less about living with Type 2 than Type 1, but any diabetic who knows anything about the way different foods are metabolized would understand what too much carbohydrate can do. Your NHS people seem to understand this where Type 1 is concerned but not with Type 2? I’m definitely confused now.

Oh, one other thing. You mentioned dietary guidelines in the western world. In the U.S., high-carb diets were standard for Type 1 50 years ago but went bye-bye after the landmark trial confirming the benefits of tight control. (I’d call my diet balanced without excess carbs.) And as far as I know, cutting down on carbs was the standard approach with Type 2 diets. If that has changed over here, I haven’t heard of it.

 

[HSSS]

That may be a rant but it’s an interesting one. You’re telling me that the NHS doesn’t promote at least a reduced-carb diet for Type 2s like you? That’s almost as shocking as telling a Type 2 not to test. I really don’t know how to make head or tail of it. True, I know less about living with Type 2 than Type 1, but any diabetic who knows anything about the way different foods are metabolized would understand what too much carbohydrate can do. Your NHS people seem to understand this where Type 1 is concerned but not with Type 2? I’m definitely confused now.

Oh, one other thing. You mentioned dietary guidelines in the western world. In the U.S., high-carb diets were standard for Type 1 50 years ago but went bye-bye after the landmark trial confirming the benefits of tight control. (I’d call my diet balanced without excess carbs.) And as far as I know, cutting down on carbs was the standard approach with Type 2 diets. If that has changed over here, I haven’t heard of it.

They didn’t promote it historically and although it is becoming more and more common thanks to some great work by forward thinking drs and organisations it’s still not wide spread or the norm. The focus for many is still on low fat and whole grains and avoiding only actual sugar. Too many drs and nurses still haven’t heard of or appreciated the full benefits of low carb. It’s happening but it’s slow. As far as I know type 1 are also told to eat “normally” ie eatwell and to count the carbs rather than restrict them. I could be wrong or it could be as mixed a bag as type 2 advice.

 

[emmastewart]

I have also been told testing is unnecessary for type 2.

 

[Member559176]

I have also been told testing is unnecessary for type 2. I am usually tested by my clinic 2 times per year if lucky

I was told same by my doctor but am coninuing to test.

 

[Member559176]

If you don't test how are you supposed to know if your blood sugars are ok, hyperglycemic or hypoglycemic, unless you're some sort of cyborg.

 

[Outlier]

We're supposed just to shut up and do as we are told.

 

[jjraak]

We're supposed just to shut up and do as we are told.

< Stands up, clapping >

 

[Member559176]

We're supposed just to shut up and do as we are toldI don't like being told to shut up

We're supposed just to shut up and do as we are told.

I don't like being told to shut up nor do I like doing as i'm told especially if it's by someone that hasn't got a clue what they are talking about. In my view & as a medical professional Diabetics of any type need to test their blood sugars.