Advice on GP refusing to give test strips?

[Deleted member 99312]

I just spoke to a GP at my surgery today over the phone - not my regular GP as she wasn't available.

I asked if I could be prescribed some test strips to help diagnose an issue I'm having and he refused.

The situation is this. I recently had a blood test which identified that my B12 was low. I wasn't told how low, I was just told by the GP receptionist it was low, and I needed to have another blood test to follow this up. I have been on Metformin for 5 years and I know this is known to cause low B12 with long-term use, so I took it upon myself to immediately cease use of it, just in case it was to blame. I know correlation isn't causation, but I've never had low B12 before, and crucially, I eat loads of stuff which has B12 in it, ie. meat, fish, cheese, natural yogurt etc. so I should be eating plenty to get adequate amounts from my diet - unless that is, that something is interfering with it. Given that low B12 can have very serious irreversible consequences, it seemed prudent to stop taking Metformin, for now.

It was also identified that my vitamin D levels are low, so I was prescribed vitamin D supplements, 50000 UI to be taken once a week, for 6 weeks.

A few days after stopping the Metformin, I found I had a VERY dry mouth in the morning. Now, I have had a dry mouth regularly while ON Metformin as well, but never THIS dry. So putting 2+2 together, stopping the Metformin looks like the culprit. However, in the past I have a few times tested my blood sugar when my mouth was dry, and it has NOT been high. And there has been no other obvious cause, like the room being too hot or dry, or me not drinking enough. But that does not mean that THIS time it isn't because my blood sugar ISN'T high. (I did read that high levels of vit D can cause a dry mouth too, BUT, I got the very dry mouth before I started on the supplements, as I deliberately waited till the weekend to start it as I thought that would make it easier to keep the schedule and remember.)

So if you've just stopped taking Metformin and then your mouth gets drier than it ever has been, what is the likely cause? You don't need to be House M.D. to figure it out, do you? So it follows that it makes sense to test yourself at the time, to see if your blood sugar is high. I asked the GP this today. He said no, this doesn't make sense. He also said I am 'not diabetic' because my hba1c is fine. Yes! It is fine because I eat a VERY low carb diet because otherwise my blood sugars go crazy high. I told him this. It cut no ice. He said I should come into the surgery for another hba1c test. I said but doesn't it make sense to test it at the time, rather than at the surgery when it might have gone down? He basically said it DOESN'T MATTER if your blood sugars are very high regularly, so long as your hba1c is okay. I realised it was pointless arguing the point further with him because, not to put too fine a point on it, the man is an idiot. This fool would evidently stand by and watch me develop complications, go blind etc. and then shrug and go, oh well that's because diabetes is a progressive disease. Well yes, it is when you have stupid GPs who LET their patients get worse while they stand by and watch! Does it really make sense to save £15 on test strips now, just to end up costing the NHS thousands LATER when I develop serious problems? He also said it only matters if your sugars go too LOW, it doesn't matter if they go too HIGH (so long as the hba1c is okay). His over-reliance on the severely limited hba1c measure is arguably negligent imo. He is supposed to be a doctor but I seem to have a greater understanding of the basics of diabetes than he does.

I have now ordered some at my own expense which I resent (I don't have two pennies to rub together basically) because I think there was a clear case for them prescribing them. And I will have to do my own 'detective work' to figure out what's going on. My guess is my blood sugar is well into double figures for my mouth to be this dry. And I also guess that this particular GP wouldn't care about that at all. Even though WE KNOW that spending long periods over 7.8 can and does do damage to your organs.

tl;dr - Doctors are supposed to be on our side but it's a lottery whether you get one who gives a toss, or who knows what they're doing.

 

[Rokaab]

Unfortunately most T2's don't get test strips because the doctors are in essence not allowed to prescribe them whether there is a clear case or not . I believe a large amount of the T2 forum members have to self-fund because they just can't get them prescribed - even when their doctors believe it would help them (a bit like the fact that for the past 1-2 years my DN has wanted to prescribe the libre for me because it has improved my control immensely, but she just couldn't because the CCG had not allowed it and therefore there was no funding available for it)

 

[Member496333]

I agree that HbA1c alone is an overrated metric. It is of course very useful but in my opinion must be combined with glucose and insulin testing in order to get a clear picture of metabolic health. Not going to happen though so the best you can do is look out for yourself.

 

[Bluetit1802]

Hi,

I just have two points to make.

Firstly, the NHS does not normally prescribe meters and test strips to type 2 diabetics unless they are on insulin or certain similar drugs that can cause hypos. There are very few of us with prescribed meters. We self fund. Meters are our best tools for showing us where we are going wrong with our food choices, and helping us keep on track. Without one we are working blind, waiting a long time between HbA1c tests, which do not tell the whole story at the best of times. Averages are just that and miss the spikes if you also have some good low numbers. They can also be inaccurate in many circumstances. I am afraid this is how it is for T2s. Your idiot doctor was following guidelines, even if his excuses were idiotic.

Secondly, always, always ask for print outs of every blood test you have. You need to see the numbers in black and white. Never accept words such as "low", "normal" "high" "OK" etc. We are entitled to these print outs. Also, if you are in England your surgery may be putting test results on-line as they are supposed to be doing. You can ask at your surgery if they do, and how to register for this service.

 

[Member496333]

In the end, if you’re type 2 then you either need to be very lucky and have a great GP, or self fund and take care of yourself. Personally I’ve even turned to private blood tests.

 

[Deleted member 99312]

Thanks for the replies, I guess I better just accept it then. It's really worrying and rather frightening though, the level of ignorance and apparent indifference from the system to our situation.

I just saw Bluetit1802's sig, where the doctor said they were no longer diabetic because they'd got it under control. How can people that thick become doctors? Really? I mean doesn't it occur to them that people like Bluetit1802 and myself have a normal hba1c NOT because we are CURED but because of enormous effort of following the right diet, and quite possibly in my case as well, the Metformin I was on.

We shouldn't need to be in the position of having to educate our doctors. How absurd is that? And of course, not many doctors like being told anything by their patients, no matter how politely and patiently we express it. This doctor today though was downright pompous and rude imo, just completely dismissive and he acted like he already knew everything.

 

[Bluetit1802]

Thanks for the replies, I guess I better just accept it then. It's really worrying and rather frightening though, the level of ignorance and apparent indifference from the system to our situation.

I just saw Bluetit1802's sig, where the doctor said they were no longer diabetic because they'd got it under control. How can people that thick become doctors? Really? I mean doesn't it occur to them that people like Bluetit1802 and myself have a normal hba1c NOT because we are CURED but because of enormous effort of following the right diet, and quite possibly in my case as well, the Metformin I was on.

We shouldn't need to be in the position of having to educate our doctors. How absurd is that? And of course, not many doctors like being told anything by their patients, no matter how politely and patiently we express it. This doctor today though was downright pompous and rude imo, just completely dismissive and he acted like he already knew everything.

My GP has simply put the wrong coding on my records. "Diabetes Resolved" is for those that were either misdiagnosed in the first place, or have had certain surgeries that have rendered them cured. The coding he should have used is "diabetes in remission". Sadly, there are no official national guidelines as to what remission means in terms of T2 diabetes. Some doctors say HbA1c's of under 48 for a certain period of time, without meds. Others say under 42. The certain period of time also varies. There are no codings available for "well controlled".

 

[Member496333]

Thanks for the replies, I guess I better just accept it then. It's really worrying and rather frightening though, the level of ignorance and apparent indifference from the system to our situation.

I just saw Bluetit1802's sig, where the doctor said they were no longer diabetic because they'd got it under control. How can people that thick become doctors? Really? I mean doesn't it occur to them that people like Bluetit1802 and myself have a normal hba1c NOT because we are CURED but because of enormous effort of following the right diet, and quite possibly in my case as well, the Metformin I was on.

We shouldn't need to be in the position of having to educate our doctors. How absurd is that? And of course, not many doctors like being told anything by their patients, no matter how politely and patiently we express it. This doctor today though was downright pompous and rude imo, just completely dismissive and he acted like he already knew everything.

Having type 2 is much easier and far less stressful if you have the time and money to educate yourself and fund your own care. Yes it’s frustrating but honestly it’s all much more pleasant after you’ve accepted the reality.

 

[Deleted member 99312]

Having type 2 is much easier and far less stressful if you have the time and money to educate yourself and fund your own care. Yes it’s frustrating but honestly it’s all much more pleasant after you’ve accepted the reality.

If only we could get things like Metformin, Gliclazide or insulin over the counter, we could cut out GPs altogether. Unfortunately they are the gatekeepers for the medication we may need (not all T2s do, I know, but many do, or will). I realise it is probably sensible to keep it this way as the general public can't be trusted not to misuse those drugs. It's just a shame that those of us who, dare I say, are able to make an informed decision and use them appropriately, are restricted too.

 

[Member496333]

If only we could get things like Metformin, Gliclazide or insulin over the counter, we could cut out GPs altogether. Unfortunately they are the gatekeepers for the medication we may need (not all T2s do, I know, but many do, or will). I realise it is probably sensible to keep it this way as the general public can't be trusted not to misuse those drugs. It's just a shame that those of us who, dare I say, are able to make an informed decision and use them appropriately, are restricted too.

Sure thing. I was referring to self-funded glucose monitoring and even lab testing if desired. I don’t think anyone should be allowed to choose their own prescription medications over the counter.

 

[enb54]

I'm surprised that the health care system in the UK is so picky about those testing strips, your system is allegedly #18 in the world, whereas ours in Canada is about #30 or so (WHO numbers). The meters here are free but you have to buy the strips which is also borderline insanity. It just is stupid that a basic method of helping control this terrible affliction is in some cases so difficult to implement, with astronomical costs and consequences to you and the system later on. I would be writing a letter to and or calling my member of parliament and to the medical association, but this is also likely an issue about eroding power. As others have mentioned, and I'm sorry to agree, looks like you are on your own or you'll have to visit a doctor or a hospital to get tested.

 

[aealexandrou]

Thanks for the replies, I guess I better just accept it then. It's really worrying and rather frightening though, the level of ignorance and apparent indifference from the system to our situation.

I just saw Bluetit1802's sig, where the doctor said they were no longer diabetic because they'd got it under control. How can people that thick become doctors? Really? I mean doesn't it occur to them that people like Bluetit1802 and myself have a normal hba1c NOT because we are CURED but because of enormous effort of following the right diet, and quite possibly in my case as well, the Metformin I was on.

We shouldn't need to be in the position of having to educate our doctors. How absurd is that? And of course, not many doctors like being told anything by their patients, no matter how politely and patiently we express it. This doctor today though was downright pompous and rude imo, just completely dismissive and he acted like he already knew everything.

You should not just accept it. Presumably you were or are diabetic otherwise metformin wouldn't be prescribed. The suggestion that you don't need to test yourself regularly and rely on an annual blood test is simply wrong. You should consider changing your GP for another more understanding at the surgery. My own GP was reluctant to prescribe the test strips and needles, because he believed the blood test was more reliable, nevertheless he relented without too much persuasion as I felt it important to monitor my condition regularly. I bought my own monitor, it did not occur to me to as ask for a prescription on the machine.

 

[NicoleC1971]

Sorry you can't get test strips via prescription and think it is admirable that you are curious enough to take your own health into your hands but rules is rules and GPs are not incentivised to prevent diabetic complications it would seem..... If you are investing in the test strips what will your blood test protocol be? The HBA1c is seen as the gold standard as it represents the equivalent of 300,000 finger prick tests, but I agree that for people not on insulin it won't capture the spikes that may indicate your own insulin response isn't quite normal. The way to capture that data would be to do tests 2 hours after a meal to see what's going on. This where a cgm (e.g. freestyle libre which you will need to pay for from Abbott) can help spot the trend line and it might be worth getting one just for a couple of weeks.
Don't forget also that eating lots of B12 foods is great but as your body ages or if you are taking other meds, e.g. omeprazole, you may absorb them less effectively. Hopefully you are getting some injections to bring you back up again?

 

[kitedoc]

HI @Dave P,
You sound like a thoughtful, proactive type of guy who has come up against a concrete thinker whose
ability to practice his profession is misplaced.
You could spend valuable time making a complaint against such a person but it is worth your time?

In hindsight, which the Americans assure us all in 20:20 vision, perhaps the thing to do might have been:
# contact your usual GP and ask for help or failing that
# speak with the practice nurse and see whether he/she would kindly do a fingerprick BSL test to help
'ease your concern about your BSL having risen since stopping the Metformin' and give him/her the choice
to advise you on whether a fasting test or 2 hours after a meal would be best.

Of course you would prefer to be able to do your own testing and collect sufficient data to be able to ascertain
for yourself whether your BSLs are out of kilter or not.
I am assuming you have a meter to go with the strips you ended up purchasing and that the meter has a
reasonably small error rate?

But if the one test with the your doctor or the practice nurse had shown a high BSL you would have an answer
and way forward then and there.

In any case I hope you have an answer from testing , otherwise a visit to the real doctor appears needed !.
Best Wishes.

 

[Deleted member 99312]

You should not just accept it. Presumably you were or are diabetic otherwise metformin wouldn't be prescribed. The suggestion that you don't need to test yourself regularly and rely on an annual blood test is simply wrong. You should consider changing your GP for another more understanding at the surgery. My own GP was reluctant to prescribe the test strips and needles, because he believed the blood test was more reliable, nevertheless he relented without too much persuasion as I felt it important to monitor my condition regularly. I bought my own monitor, it did not occur to me to as ask for a prescription on the machine.

Indeed there is absolutely no question I am diabetic, so this doctor telling me I'm not is quite infuriating. When diagnosed I was urinating frequently, my vision was blurry, my numbers were very very high, I was put on gliclazide, my vision later got better but it's permanently damaged, ie. long-sighted when it used to be perfect. If I eat more than say 15-20g of carbs in a meal, I will get high numbers. I can't tolerate more than the carbs in a greek yogurt at breakfast time (about 5.5g). Not diabetic though, according to the esteemed doctor!

I did get test strips off a previous GP where I used to live, and I understand it's basically a lottery. But the GP today will be able to claim he's following the guidelines, so I doubt there's any point in complaining at this point. I expect this particular GP (who isn't my regular one) wouldn't even give me Metformin. I am only getting that because I was able to convince my regular GP that the LAST time I stopped taking it, on the advice of my diabetic nurse at the time, my numbers started going high in the mornings due to the dawn phenomenon presumably. So... I've stopped again... dry mouth... what could be causing it, doctor? Hello? Bah. You can tell I'm frustrated with these people because this is our lives they're messing about with.

 

[Deleted member 99312]

HI @Dave P,
You sound like a thoughtful, proactive type of guy who has come up against a concrete thinker whose
ability to practice his profession is misplaced.
You could spend valuable time making a complaint against such a person but it is worth your time?

In hindsight, which the Americans assure us all in 20:20 vision, perhaps the thing to do might have been:
# contact your usual GP and ask for help or failing that
# speak with the practice nurse and see whether he/she would kindly do a fingerprick BSL test to help
'ease your concern about your BSL having risen since stopping the Metformin' and give him/her the choice
to advise you on whether a fasting test or 2 hours after a meal would be best.

Of course you would prefer to be able to do your own testing and collect sufficient data to be able to ascertain
for yourself whether your BSLs are out of kilter or not.
I am assuming you have a meter to go with the strips you ended up purchasing and that the meter has a
reasonably small error rate?

But if the one test with the your doctor or the practice nurse had shown a high BSL you would have an answer
and way forward then and there.

In any case I hope you have an answer from testing , otherwise a visit to the real doctor appears needed !.
Best Wishes.

Thank you, yes I do have a tester which seems to be reliable enough (I know they aren't 100% accurate but it seems to be broadly consistent, and when I've had unexpected results before, I have done another test immediately and it's always been very close). If the machine says 12.5 and it's really 11 or 14, it doesn't really matter, all that matters is I'll know it's too high and I need to see my doctor ASAP and discuss how to take Metformin - OR an alternative diabetes medicaiton - while preventing my B12 from dropping dangerously.

It's all in hand, it's just a shame you feel like it needs to be you who is the 'expert' and the doctor is like a reluctant mule who you have to carefully cajole and coax into action though.

 

[Deleted member 99312]

Sorry you can't get test strips via prescription and think it is admirable that you are curious enough to take your own health into your hands but rules is rules and GPs are not incentivised to prevent diabetic complications it would seem..... If you are investing in the test strips what will your blood test protocol be? The HBA1c is seen as the gold standard as it represents the equivalent of 300,000 finger prick tests, but I agree that for people not on insulin it won't capture the spikes that may indicate your own insulin response isn't quite normal. The way to capture that data would be to do tests 2 hours after a meal to see what's going on. This where a cgm (e.g. freestyle libre which you will need to pay for from Abbott) can help spot the trend line and it might be worth getting one just for a couple of weeks.
Don't forget also that eating lots of B12 foods is great but as your body ages or if you are taking other meds, e.g. omeprazole, you may absorb them less effectively. Hopefully you are getting some injections to bring you back up again?

I don't think I'm old enough (mid 40s) that it would account for my low B12 levels, though yes it is certainly something to consider. I rule nothing out at this point. I'm not on any other medication, so Metformin is the prime suspect, though as yet unproven, it's merely circumstantial evidence against it. Also I'm very familiar with how to test, as that is how, through extensive testing before and after eating, I was able to determine what I can and can't eat, and when, and the quantities. I even have a detailed spreadsheet. Being a diabetic is like a full-time job, at least if you fully intend to be one of the fortunate ones who remains complication-free.

 

[HSSS]

On the b12 side of things the nhs minimum levels are ridiculously low and much much lower than most organisations or other countries recommend as minimal. Mine were exactly on the cut off and I was refused supplements or medications. I bought my own methylcobalamin that dissolved in the mouth (not cyanocobalamin as that’s not well absorbed at all and any digestive issues make it even less so). Firstly in Holland and Barrett and then much more cheaply online from the USA. In 10 weeks of one pill most days it went from around 160 to 800. Sadly it’s halved in 6 months but that’s another issue no one will take seriously as apparently we don’t store b12 according to the last gp I saw!

 

[Deleted member 99312]

On the b12 side of things the nhs minimum levels are ridiculously low and much much lower than most organisations or other countries recommend as minimal. Mine were exactly on the cut off and I was refused supplements or medications. I bought my own methylcobalamin that dissolved in the mouth (not cyanocobalamin as that’s not well absorbed at all and any digestive issues make it even less so). Firstly in Holland and Barrett and then much more cheaply online from the USA. In 10 weeks of one pill most days it went from around 160 to 800. Sadly it’s halved in 6 months but that’s another issue no one will take seriously as apparently we don’t store b12 according to the last gp I saw!

I was told over the phone that my level is 153, but I wasn't told the unit of measurement and didn't think to ask, I assume pg/ml though. I gather the NHS uses 190-200 as the minimum, which apparently differs according to local health authority (why?). So it's not dangerously low yet, and I have no symptoms as far as I can tell (dry mouth is a symptom but not of low b12).

Did your GP really say we don't store b12? That's pretty shocking if so. I read it takes up to 5 years to be depleted to a too-low level. Which corresponds well to my time on Metformin. Interestingly the leaflet in the Metformin box says low b12 is a very rare side effect, 1 in thousands, but elsewhere I read it affects up to 30% of long-term users. I've also read about people with low b12 with nerve problems, being misdiagnosed by ignorant GPs as having diabetic neuropathy. You really do have to educate yourself and then spoon-feed this info to GPs when necessary.

I am just wondering, supposing I need to keep taking Metformin, will methylcobalamin supplements increase my b12 levels sufficiently (or maintain them if I had to have injections first) or would the Metformin block that too? I wonder if a study has been done or whether I'd just have to try it and see.

 

[Traceymac23]

Sure thing. I was referring to self-funded glucose monitoring and even lab testing if desired. I don’t think anyone should be allowed to choose their own prescription medications over the counter.

plus over the counter=paying