Have you been told not to test your blood sugars?

JohhnyHachoo

Member
Messages
16
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.
I take glicazide and because I drive I was told to test before driving or driving more than 2 hours. Today, when I called about rising blood glucose levels, I was challenged as to why I tested so frequently. I know in the USA patients are encouraged to test regularly.
 

Riva_Roxaban

Well-Known Member
Messages
3,020
Type of diabetes
Type 2
Treatment type
Diet only
I was challenged as to why I tested so frequently. I know in the USA patients are encouraged to test regularly.
They are also told this here in Australia as well, your GP and medical staff at the practise need pulling into line over this.
 

Dollylolly

Well-Known Member
Messages
190
Type of diabetes
Prediabetes
Treatment type
Other
Dislikes
The docs thinking drugs cure all
I was told don’t test when diet and exercise but only told to eat of the eat well plate now guide snd walking will help me lose the weight. I wasn’t that fat to start with.
I got to see a dietitian thinking it was an ongoing thing but wasn’t it was a one time thing instead and a complete waste of time

240g of carbs daily
Eat starchy carbs at every meal
Eat marg vomiting at the thought of it

I eventually had burn out and my levels spiked to 116 eekkkk as I hadn’t been for 2 years and they didn’t follow it up either
Meds where spoken about
Glizazide
Metaformin
Insulin
Dapagliflozin

we eventually decided on the dapagliflozin as I said no to insulin right away as once on it’s hard to come off it.
I then googled this drug and was gobsmacked it was allowed on the market. Again I was told not to test. I sited the blurb to them this can cause hypos I want test strips, meter the whole thing they reluctantly gave me a months supply.

I self fund the rest. They know this and my nurse (she’s not a diabetic one) says I shouldn’t you’ll worry and it’ll give you sore fingers. I counter it with I rather like my fingers thanks.

I’m also meant to get tested 3 monthly because of these meds to do with kidney function mainly. I had to threaten a complaint to the NHS complaints Body to the practice manager as she said yearly eh no check the NICE guidelines you’ll find it’s 3 monthly if fine it’s 6 monthly not yearly.
Strangely I’ve now been twice for a review.

Strangely nurse asks for my results and I asked why I’m not meant to test. This same nurse said I could eat bananas without spiking yeah dear how would I know if I didn’t have a monitor to check. She muttered under her breath at me. I’m just a T2.
I lost my temper and said yes I’m T2D but this condition can kill me if I’m not looked after by the medical profession as I’m meant to be. You my dear have no clues and shouldn’t be parting with advice on said condition.

Oh and I’ve hypod on this med why and how don’t take if fasting ever. I was called a liar so I sent my screen shot of my monitor. Plus If doing hitts and no breakfast you can hypo and again nurse said I was lying. I’ve actually complained about this nurse and rarely see her these days but if I do I just kill her with kindness. Site NICE guidelines to her and an email to low carbing as I quote I’m on a fad diet.

Hoping to be off the meds soon too
 

dcle2021

Active Member
Messages
35
Type of diabetes
Type 2
Treatment type
I do not have diabetes
Dislikes
My diabetic nurse, and NICE guidance.
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.
I was told that HBA1C was a valid enough measurement that they would not do fasting glucose tests or other diagnostic tests. I am actively refused such tests and it is only at the second NICE intervention stage (sugar lowering drugs, after metformin) that they will provide a sugar testing monitor/kit (because they have to, or I could have a hypo if I take these drugs).

The reluctance to actually perform tests in the NHS is down to the NICE guidance for practitioners which is here, and is based solely on HBA1C. Its not acceptable, and I believe the scale of misdiagnosis is huge. The NHS is chasing increasingly marginal numbers on HBA1C - and I am not convinced (like in the case of the body-mass-index, which is based on population samples from as far back as the 1830s, although I think the NHS did some adoption work in the early years of its founding in the 1950s : in both cases, when malnutrition was still a thing) that they have sufficient background research to justify that approach.
 
  • Like
Reactions: ziggy_w

dcle2021

Active Member
Messages
35
Type of diabetes
Type 2
Treatment type
I do not have diabetes
Dislikes
My diabetic nurse, and NICE guidance.
I was told that HBA1C was a valid enough measurement that they would not do fasting glucose tests or other diagnostic tests. I am actively refused such tests and it is only at the second NICE intervention stage (sugar lowering drugs, after metformin) that they will provide a sugar testing monitor/kit (because they have to, or I could have a hypo if I take these drugs).

The reluctance to actually perform tests in the NHS is down to the NICE guidance for practitioners which is here, and is based solely on HBA1C. Its not acceptable, and I believe the scale of misdiagnosis is huge. The NHS is chasing increasingly marginal numbers on HBA1C - and I am not convinced (like in the case of the body-mass-index, which is based on population samples from as far back as the 1830s, although I think the NHS did some adoption work in the early years of its founding in the 1950s : in both cases, when malnutrition was still a thing) that they have sufficient background research to justify that approach.

Apologies forgot to post the link: https://www.nice.org.uk/guidance/ng28
 

JohnEGreen

Master
Messages
13,188
Type of diabetes
Other
Treatment type
Diet only
Dislikes
Tripe and Onions
I was told not to test but have done since the day I was diagnosed self funded.Doctor says regular HbA1c tests are all that is required for T2 even though I am drug induced and there are differences.

I am thinking of having a discussion with him as I have CKD and that can make A1C highly unreliable as it effects red blood cells, about some other test that can be done.
 

Granny_grump_

Well-Known Member
Messages
3,105
Type of diabetes
Type 2
Treatment type
Diet only
Dislikes
Dishonesty lies and thieves and online Bullies!!!
I was told not to test but have done since the day I was diagnosed self funded.Doctor says regular HbA1c tests are all that is required for T2 even though I am drug induced and there are differences.

I am thinking of having a discussion with him as I have CKD and that can make A1C highly unreliable as it effects red blood cells, about some other test that can be done.
Hi John I remember this discussion well years ago I’m like you i test not has much over the past 20months hence state my BG level at 9mmol this morning but how can anyone manage their diabetes if they can’t get access to a monitor and testing strips. Doctors need to wake up no good going on about all the health problems and issues Type 2 causes if they don’t help you. Mine has always been helpful thankfully.
 

Robo42

Well-Known Member
Messages
65
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Originally 10+ years ago when diagnosed with type2, I had test strips on prescription and would have not had any idea when & what foods affect me & to what degree without testing pre & 2 hrs after meals logging down what I ate.

A dietician went thu my diet but just highlighted what best to eat, included fruit & orange juice was not very helpful. I found breakfast with any carbs was bad, eggs,mushrooms,fish,sausages was good, lunch little bread but not wheat I handled some carb in evening better.

Testing for some weeks gave me a good idea what affected me, everybody is different so I see testing necessary to know your body. This kept me off medications for 8/9 years, last couple of years on a small dose. Test strips stopped being on prescription after 2 years so I found a monitor that had cheapest

Test strips & have bought myself since. HBA1C is taken as more accurate but being only 6 monthly or yearly is long time to wait if blood sugar has changed. Funny blood test strips went off prescription same time as both the doctor & diabetic nurse said don’t test yourself!

My HBA1C was up a bit last year so I did more testing pre & after meals, I improved my eating habits and has gone down I it’s easy to slip and eat some treats. TESTING yourself can only be a positive and recommended.
 

Karoline

Member
Messages
19
Type of diabetes
Type 2
Treatment type
Tablets (oral)
You are wrong, Sid. How often do newcomers arrive with that sort of question. DUK themselves advise & encourage testing. We are all in touch with health professionals, some of whom reject that advice because they know the value of testing, & the improved control it affords.

Rather than the having the problem reported on countless threads, it could focus on one thread the many who have experienced such bad advice.

Compare the poll on statin problems, which resulted in 60% of contributors suffering & giving up on the drug.

Can we convert this thread into a poll?
I have been told exactly the same thing that I don’t need to test but how am I suppose to know if I am doing things right if I don’t? I bought one myself and do test, it’s only been 3 days and was wondering how soon does the glucose level drops of on medication and dieting?
 

Bigbassett_

Well-Known Member
Messages
59
Type of diabetes
Type 2
Treatment type
Tablets (oral)
They always tell me not to test and don't want me to have test strips. I'm currently permanently high and out of control. I did manage to get under control with low carb diet and excercise, but for one reason or another have lost control for a few years now.

Anyway back to subject, I found regular testing was the only way to know what was going on. I feel victimised by health services in the uk. It's my own fault. I was diagnosed when running regularly up to 16 miles at a time. My diet wasn't great I must admit. Now I'm just starting back running, I stopped as got to a point i'd go as low as 3mmol sugar and then eat so many sweets cos it scared me i'd come home high. Good luck getting any sense out of gp on the subject.
 
  • Like
Reactions: pms543

wu-lee

Member
Messages
18
And if you dont want to dig through - this is the page the DNs work off.

https://www.nice.org.uk/guidance/ng...in-adults-with-type-2-diabetes-pdf-2185604173

Thank you for that. It answers one of my outstanding questions: "Where does my doctor get their information?"

However I noticed the link is broken already... Reading your earlier link to the full guidelines, I see it now says:

In February 2022, we reviewed the evidence on drug treatment and made new recommendations.

This may be why it has gone. I'm not sure what the replacement is, if anything, but it may be this:

https://www.nice.org.uk/guidance/ng...rstline-and-further-treatment-pdf-10956472093

However, although that doesn't include the phrase from the earlier document "Do not routinely offer self-monitoring of blood glucose levels unless [... exceptions]", the full guidelines do still include that phrase.

In the mean time, for those who care, good old Wayback Machine has a copy of the previous version of the 1 page algorithm here.
 

jjraak

Expert
Messages
7,441
Type of diabetes
Type 2
Treatment type
Tablets (oral)
I have been told exactly the same thing that I don’t need to test but how am I suppose to know if I am doing things right if I don’t? I bought one myself and do test, it’s only been 3 days and was wondering how soon does the glucose level drops of on medication and dieting?

Hi

If you are measuring in morning ( FBG )
And going LCHF as I did.

Then I'd suggest it would be over the month .

I'd start each week say at FBG 10
Seconds week I'd get the odd 9.
By week 3 they'd be even.
At week it would be more 9's on average.

Then begin all over again.
Start week 5 all 9's......

It took me from Oct to Jan to come down from a 58 HBA1c back to a 42 HBA1c, so around 12
Weeks (think test was early Jan)

And the descent down in HBA1c probably stabilised in and around Xmas at mid 5's

Bear in mind how individual we are, and some came down from much higher HBA1c in a similar time frame

I believe, from what I have read, the body, is reluctant to drop our BG levels, thinking the intended sugar drop is an error of some sorts

So fights to keep us as high as normal, until we sort ourselves out ..AKA by eating as before.

Once it recognises factors have changed,
it then permits a drop down, once it sees we are managing with less sugar/carbs.

It's a stubborn guardian of our survival.
Usually a friend but sometimes our biggest foe.

Good luck on your journey @Karoline
 
  • Like
Reactions: Outlier

Outlier

Well-Known Member
Messages
1,541
Type of diabetes
Type 2
Treatment type
Diet only
When I last saw Nursie (end of December) she got shirty about my consistently non-diabetic fingerprick test record and said they only took notice of HBA1C (which at the time included my stint in hospital with something else being treated by insulin without consent, plus several other drugs 3 of which raised BG plus a very high-carb diet) and that they now rounded HBA1C test figures up to the nearest whole number and didn't deal with fractions any more. So that's really accurate, then. Anyone else been told this? Something to watch if it's so across the board, though it might just be this particular surgery's protocols.
 

Wilber123

Well-Known Member
Messages
121
Type of diabetes
Prediabetes
Iv been pre diabetic for 6/7 years. My Gzp originally said Do not test. I ignored him and bout a meter and strips. Iv learnt a lot about my issues but really I don’t feel my Gp surgery has helped me at all.
Everything I know I found out myself.
Shocking when you think about it.
 
  • Like
Reactions: jjraak

Happyhomelands

Well-Known Member
Messages
171
I was told by my GP not to test when he told me I had diabetes. I bought my own meter and got my sugars down to pre diabetes. Now 4 years later my eyesight felt wrong so I tested myself and my sugars are high. I requested an AC1c which is 64. I wish I had carried on testing even if it was only monthly. Im not looking forward to seeing my GP next week.
 

Erin

Well-Known Member
Messages
748
Type of diabetes
Type 2
Treatment type
Insulin
Dislikes
mean people, corrupt politicians, poverty, happy pharmaceutical ads;
Yes, I was told testing is unnecessary for type 2's not on insulin by my nurse.
But do they give a reason? And why not for insulin takers; I do wish medical professionals had the time to be more specific.
 

Antje77

Oracle
Retired Moderator
Messages
19,284
Type of diabetes
LADA
Treatment type
Insulin
But do they give a reason? And why not for insulin takers; I do wish medical professionals had the time to be more specific.
Usually they feel testing is for safety regarding hypos when on insulin (and it's a prerequisite if you want to drive).
Testing to manage your condition without insulin is something they've often never given thought.