Advice on GP refusing to give test strips?

Dave P said:

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.

Click to expand...

My understanding was it reduced uptake % so if more is going in then more will be absorbed. Not sure if absorption via the oral mucosa has any effect over gastric absorption with regards to metformin though. I’m not nor have been on it.

Yes my understanding is that it takes years to deplete stores. His answer was it’s water soluble so peed out if in excess. He thinks it’s just come down to my personal running level. Ie my blood levels should be lower than I took it up to and therefore homeostasis kicked in I offloaded the excess. All I can do is try and keep blood levels monitored as I don’t think stores can be measured. I would assume each body finds and broadly maintains its natural level via dietary intake and top ups from liver storage only falling in blood serum when both sources are deficient.

Is it worth speaking to your regular GP.......or will he fall in behind his colleague and follow 'the rules'?

Does anyone still have a regular gp? My practice had about 6 at one time. There is now 1. Anyone else there is a temporary fixture. There is absolutely no way at all of seeing the same person twice let alone consistently.

According to my lab report, the B12 standard range is 160 to 1000. Labs will vary in the standard ranges. Something to do with the type of machinery and techniques they use. I don't think it is anything to do with which health authority you are in - just the lab the surgery uses.

Dave P said:

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.

Click to expand...

Two of the meds you want to deregulate are dangerous and an overdose can lead to death, In fact Insulin was the drug of choice of Dr Harold Shipman and used in other infamous cases. Glic is more benign but can still cause death in overdose.

enb54 said:

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.

Click to expand...

Or a pharmacy. Many high street ones do offer a glucose test here in the UK

aealexandrou said:

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.

Click to expand...

The doctor is not wrong or idiotic. He has to follow by law the guidelines set down by the Controlling institution, which in the UK is NICE. These are like the tablets of stone - go against them and lose your licence to practice, The guidelines are HbA1c driven, and the prescription plan is similarly rigid. Stage one for all is Metformin _ diet and lifestyle control. If you still go above a threshold, the a second stage med can be prescribed, and again it is a fixed list ,So it goes on. It is a recipe for disaster IMHO but until it changes the NHS will continue sailing blindly towards the iceberg (more like a fatberg if you read the press nowadays)

Dave P said:

I don't think I'm old enough (mid 40s) that it would account for my low B12 levels,

Click to expand...

I have been low on B12 since I was in my 20s.
Some people have difficulty using it from food. It is true that age and use of metformin is also a factor.
I had injections for a year and now can take a high doses of supplements and manage to keep my levels with in a healthy range.

Dave P said:

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.

Click to expand...

Metformin is known to lower B12, you should be on B12 supplements whilst you are on it.

Hotpepper20000 said:

I have been low on B12 since I was in my 20s.
Some people have difficulty using it from food. It is true that age and use of metformin is also a factor.
I had injections for a year and now can take a high doses of supplements and manage to keep my levels with in a healthy range.

Click to expand...

Yes I’ve had monthly injections of B12 for some years now for poly neuropathy in my feet and legs. But when I was in the U.K. I was late for my injection - and I know about it because I get sharp pains and burning I my feet/legs. Anyway I bought some B12 tablets from Holland and Barrett. The kind that melt under your tongue because it absorbs better. Got into trouble with my gp last month because I had been taking them too regularly and my B12 levels were very high. So they do work )

Yes I was. And it did.

Dave P said:

It isn't set in stone like that. If it was, one of my previous GPs wouldn't have prescribed me test strips a few times when I asked her.

It explains on here that type 2s can still get them under some circumstances:

https://www.diabetes.co.uk/nhs/availability-of-test-strips.html

As for the doctor not being idiotic; he said that high blood sugar for long periods regularly doesn't matter, so long as your hba1c is normal. That's simply wrong. And as for diagnosing my dry mouth, it is simple common sense that you want to test at the time the mouth is dry, not later on when it isn't. Or maybe he thinks I should just tolerate a very dry mouth for some reason.

I mean, if he'd said yes you're right, high blood sugar is the prime suspect, you should get it tested, but sorry I can't prescribe strips because them's the rules, then I'd accept that. But to tell me I don't even need to test myself. That's ... idiotic.

Click to expand...

In my experience with both being on metformin , off metformin, having high blood sugrs in the high twenties and above, it did not give me a dry mouth. not once, It can be a symptom for diabetes, and is normally accompanied by high urine output, where the kidneys are overwrorking to excrete the excess glucose. This usually needs bgl in the high 20's for sustained periods, and you have not yet indicated these levels in any post yet,

The advice not to test is indeed idiotic, but is the response dictated by NICE, which he is following to the letter. As a T2D I self test even though the GP practice as a whole tell me not to, and on the hospital ward I am on I was forced to send my bgl meter back home and rely on the hospital one done at whatever time they feel like. This is common in the NHS and yes I disagree with this policy, but most HCP's need to protect their backsides.

As it happens, I am a lucky beggar in that I was getting strips supplied by GP on scrip, but I had to go through a charade to get there, and tick their boxes in the right order, and jump through their hoops. That support has ended now and I will have to self fund from when I get out of hospital. I now have a tickbox I cannot tick any more since I am technically in Remission. I still need to test and control my diet, but I take responsibility for that now.

Dave P said:

Because I haven't been able to test. For all I know, it is that high. The strips are coming tomorrow so I'll know then. I am panicking it is that high now. If that's right that it needs to be really high to give a dry mouth then it just makes the doctor today even more negligent in my opinion; he should have been telling me to come in ASAP and get tested, or even go to A&E because that sort of level is very very high.

Click to expand...

He should have asked more questions to discover why your mouth is dry because a dry mouth is common and is a symptom of many different conditions, nothing to do with diabetes. My mouth is often very dry when I wake up but this is because I sleep with my mouth open. As soon as I wake up and have a sip of water it goes back to normal. My blood sugars are low over night.