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Advice on GP refusing to give test strips?

  • Thread starter Thread starter Deleted member 99312
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He seemed to just see me as a nuisance and was dismissive that there was any problem.

I've been keeping notes of my dry mouth since it began when I came off Metformin, and on some nights / mornings my mouth has not been dry at all. There seems to be no rhyme or reason to it. If I was eating loads of carbs (or loads of anything) in the evening, or late, when it happened, then I could point to that and say yes that's it. But I'm very strict and disciplined with what I eat, and how often, and how late. I keep hydrated, I drink zero alcohol (completely teetotal for over 5 years), it's really a mystery.

I will figure it out by trial and error, and a process of elimination. I will at least be able to figure out some more of things that are not causing it, even if I can't figure out exactly what is.
 
Dave P said:
He seemed to just see me as a nuisance and was dismissive that there was any problem.

I've been keeping notes of my dry mouth since it began when I came off Metformin, and on some nights / mornings my mouth has not been dry at all. There seems to be no rhyme or reason to it. If I was eating loads of carbs (or loads of anything) in the evening, or late, when it happened, then I could point to that and say yes that's it. But I'm very strict and disciplined with what I eat, and how often, and how late. I keep hydrated, I drink zero alcohol (completely teetotal for over 5 years), it's really a mystery.

I will figure it out by trial and error, and a process of elimination. I will at least be able to figure out some more of things that are not causing it, even if I can't figure out exactly what is.
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Do you snore? That is one thing that causes it.
 
Bluetit1802 said:
Do you snore? That is one thing that causes it.
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Don't know, I live alone. But as I said, this very very dry mouth has only occurred since I came off Metformin. Prior to that I had a dry mouth occasionally which was a minor annoyance. I tested on a few of these occasions and it was not at all high. I mean I would actually get out of bed at 3am or whatever, to make sure I tested there and then, just to make sure.

But this is different, it's on another level. You can feel the dryness in your gums, in your eyes. My mouth was virtually stuck closed. Not pleasant at all. You'd think a doctor would want to help you with that. I thought wrong.
 
I get your point. Drs may be obliged to follow nice and local guidelines. They may not be able to prescribe test strips as a result. They have their hands tied. I get that and sympathise with those wanting to do otherwise.


That is not the same thing at all as telling you testing is pointless and irrelevant.

It is not the same as actively discouraging you from doing so at your own expense, ideally if you choose to do so they should be helping you interpret safety the results.

It is not the same as dismissing your health concerns without explanation nor the same as failing to investigate or explaining what’s happening if they feel there is no need to progress it.

I’m sorry but I feel it’s almost criminal to fail to explain their actions. They should act and support or explain reasonable cause not to act and support. Both directions may be completely justified but **** excuses are not. If they not allowed to do so then they should say so.
 
HSSS said:
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!
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B12 is stored in the liver, and if one develops a condition that stops absorption it can take some years for the liver storage of B12 to be depleted !! see mayoclinic.org - Vitamin B12.
 
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.
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That doc has not read mayoclinic.org Vitamin B12. The liver stores several years worth !!
And mayoclinic.org - Vitamin Deficiency anaemia - explains the various causes for B12 deficiency.
How are your BSL readings going? Any BSLs > 7.8 to 8.5 mmol/l (2 hours after a meal, or > 7 mmol/l fasting (frst thing in the morning.
Of course there are many causes of dry mouth see mayoclinic.org - Dry Mouth Symptoms and Causes
 
kitedoc said:
B12 is stored in the liver, and if one develops a condition that stops absorption it can take some years for the liver storage of B12 to be depleted !! see mayoclinic.org - Vitamin B12.
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As I understood. I guess where I get a bit lost is blood tests measure serum levels not liver stored levels. I am assuming blood levels are maintained and topped up by the liver unless there is none left in storage to do so. Therefore falling serum levels indicate not only insufficient amounts in blood but also in the liver. This would indicate to me it is not being absorbed for some reason, metformin, dietary choices or otherwise. And that those levels whould fall slowly over years not a few months. Am I right?
 
HSSS said:
As I understood. I guess where I get a bit lost is blood tests measure serum levels not liver stored levels. I am assuming blood levels are maintained and topped up by the liver unless there is none left in storage to do so. Therefore falling levels indicate not only insufficient amounts in blood but also in the liver. This would indicate to me it is not being absorbed for some reason, metformin or otherwise. Am I right?
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Yes. @HSSS that sounds right!
My understanding of it, from sources like mayoclinic.org - vitamin deficiency anaemia, and mayoclinic.org Vitamin b12:
B12 in our food it usually met in the stomach by a substance called intrinsic factor, (IF) for short. IF is produced by special cells in the stomach lining (parietal cells) and acts like a chauffer service.

The combined B12-IF 'vehicle' passes down the small intestine to the last part of it where the B12 steps out and in through the intestine into the blood stream and whatever excess is not used is stored in the liver.

So - if antibodies form against IF or the parietal cells, or that part of the stomach is removed - no IF means no chauffer service
and B12 cannot be delivered in the right form to where it is usually absorbed. called Pernicious anaemia.

If one does not eat meat, eggs etc. e.g. as in a vegan-type diet and no other form of B12 is taken (no supplements taken for example) eventually the liver's store of B12 becomes depleted.

And on the way down the intestine, a fish tapeworm, if present, can gobble up the IF-B12.

Or if the last part of the small intestine has been removed or is sufficiently damaged ( e.g. coeliac disease, inflammatory bowel disease) then the B12 cannot be absorbed.

It is not clear how Metformin leads to lowering of B12 levels. Some other medications can lower B12 levels or interfere with B12 absorption also.
Apparently taking Vitamin B12 tablets at the same time as Vitamin C tablets causes B12 to be less well absorbed.
 
kitedoc said:
Yes. @HSSS that sounds right!
My understanding of it, from sources like mayoclinic.org - vitamin deficiency anaemia, and mayoclinic.org Vitamin b12:
B12 in our food it usually met in the stomach by a substance called intrinsic factor, (IF) for short. IF is produced by special cells in the stomach lining (parietal cells) and acts like a chauffer service.

The combined B12-IF 'vehicle' passes down the small intestine to the last part of it where the B12 steps out and in through the intestine into the blood stream and whatever excess is not used is stored in the liver.

So - if antibodies form against IF or the parietal cells, or that part of the stomach is removed - no IF means no chauffer service
and B12 cannot be delivered in the right form to where it is usually absorbed. called Pernicious anaemia.

If one does not eat meat, eggs etc. e.g. as in a vegan-type diet and no other form of B12 is taken (no supplements taken for example) eventually the liver's store of B12 becomes depleted.

And on the way down the intestine, a fish tapeworm, if present, can gobble up the IF-B12.

Or if the last part of the small intestine has been removed or is sufficiently damaged ( e.g. coeliac disease, inflammatory bowel disease) then the B12 cannot be absorbed.

It is not clear how Metformin leads to lowering of B12 levels. Some other medications can lower B12 levels or interfere with B12 absorption also.
Apparently taking Vitamin B12 tablets at the same time as Vitamin C tablets causes B12 to be less well absorbed.
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If you take iron tablets for anemia, then these need folate source and also Vit C and Vit D3 to be properly absorbed . So if also taking B12 supplement then this needs to be at a time well away from the Vit C supplement. ,The iron supplement needs an acidic stomach, so again avoid taking it with any antacids or a PPI med, This may explain why B12 injections are more effective.
 
Oldvatr said:
If you take iron tablets for anemia, then these need folate source and also Vit C and Vit D3 to be properly absorbed . So if also taking B12 supplement then this needs to be at a time well away from the Vit C supplement. ,The iron supplement needs an acidic stomach, so again avoid taking it with any antacids or a PPI med, This may explain why B12 injections are more effective.
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Thanks @kitedoc and @Oldvatr. V useful info. I've been taking Vit C, D and B complex and feeling improved (less fatigue) bit I will take the B at a diff time (or day) than the Vit C and D in future.

I'm surprised no pharma has offered metformin with added B12? Surely it would lead to more effectiveness? I'd be interested to learn if anyone here knows why.
 
DawnOfTheZed said:
Thanks @kitedoc and @Oldvatr. V useful info. I've been taking Vit C, D and B complex and feeling improved (less fatigue) bit I will take the B at a diff time (or day) than the Vit C and D in future.

I'm surprised no pharma has offered metformin with added B12? Surely it would lead to more effectiveness? I'd be interested to learn if anyone here knows why.
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Please check the B Complex since these often do not include B6 or B12. B12 supps have a shortish shelf life, which is possibly why not included in B Complex or in Mertformin. Also it may be in a form that the pill manufacturing process could affect its effectiveness since many Metformins are slow release and have an extra coating on the pills.
I may be wrong here, but Vit B12 supps are not medically approved, and only the injected form can be given or prescribed by a doctor.
 
Oldvatr said:
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.
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I can confirm that is correct....while in hospital they test you when they see fit with their equipment.....I was lucky as my consultant on the ward was also my regular diabetic consultant swho I see as an outpatient so she was happy to prescribe 4 times a day testing when one of the junior doctors wanted them twice a day.......times will be dictated by nurse shift times and ward meal times.
 
DawnOfTheZed said:
Thanks @kitedoc and @Oldvatr. V useful info. I've been taking Vit C, D and B complex and feeling improved (less fatigue) bit I will take the B at a diff time (or day) than the Vit C and D in future.

I'm surprised no pharma has offered metformin with added B12? Surely it would lead to more effectiveness? I'd be interested to learn if anyone here knows why.
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my guess would be cost
 
Thanks @Oldvatr and @Bluetit1802.

I have Lamberts B-50 complex containing 50 ug of B12 methylcobalamin and Viridian B-Complex B12 containing 250 ug of adenosylcobalamin and 250 ug of methylcobalamin. For the latter that represents 20,000 of the EC nutrient reference value. Am hoping even with poor absorption some will get in. I tend to take a different multivitamin once every few days rather than at every meal so am covering all bases?

I had a medichecks wellwomen blood test which showed I was a bit low (still normal range) for Vit D and Magnesium. As one of the multivits I had been taking was a Vitabiotics Jointace which contains Vit D and Mg for a few weeks beforehand, I might have been much lower before. Low in either can cause fatigue, which what I was experiencing (as well as the undiagnosed diabetes of course). GP hadn't bothered to test me for any of those. Now am going to keep an eye on my own health myself.
 
Just received the test strips and tested myself.

11.8.

Very high. I've eaten little all day, and what I have eaten has been the usual low carb stuff like cheese, nuts, yogurt, coffee & cream. So there is no reason for it to be this high.

It appears I have no hope of controlling my sugars without drugs.

I will be phoning the doctor's surgery on Monday.
 
Dave P said:
Just received the test strips and tested myself.

11.8.

Very high. I've eaten little all day, and what I have eaten has been the usual low carb stuff like cheese, nuts, yogurt, coffee & cream. So there is no reason for it to be this high.

It appears I have no hope of controlling my sugars without drugs.

I will be phoning the doctor's surgery on Monday.
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Is it only Metformin that you stopped taking? Metformin does very little to keep blood sugars down. It doesn't work like that. It helps with insulin resistance and reduces the amount of glucose your liver produces, but all to a limited extent. Give yourself a chance, be patient, and hopefully things will settle down.
 
Dave P said:
Just received the test strips and tested myself.

11.8.

Very high. I've eaten little all day, and what I have eaten has been the usual low carb stuff like cheese, nuts, yogurt, coffee & cream. So there is no reason for it to be this high.

It appears I have no hope of controlling my sugars without drugs.

I will be phoning the doctor's surgery on Monday.
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I think you need to do a few tests over a day or so to make sure that you are genuinely on the high road. We should not make such decisions on the basis of a single result.
What nuts were they? I fnd many spiked me such as cashew, brazil but almonds were ok.
 
Dave P said:
Just received the test strips and tested myself.

11.8.

Very high. I've eaten little all day, and what I have eaten has been the usual low carb stuff like cheese, nuts, yogurt, coffee & cream. So there is no reason for it to be this high.

It appears I have no hope of controlling my sugars without drugs.

I will be phoning the doctor's surgery on Monday.
Click to expand...
Bluetit1802 said:
Is it only Metformin that you stopped taking? Metformin does very little to keep blood sugars down. It doesn't work like that. It helps with insulin resistance and reduces the amount of glucose your liver produces, but all to a limited extent. Give yourself a chance, be patient, and hopefully things will settle down.
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Yes, that was the only drug I was taking. The only other thing I am taking is a weekly vitamin D supplement which I mentioned earlier (which of course is not for treatment of diabetes per se but needs to be considered in case it is a factor. I have taken it twice and today will be the third, when I eat later.)

Well my sugars are usually under 7.8 at all times, usually a lot lower, ie. 4-5.5 which is where I want them. Now it's 11.8. If it isn't the Metformin then what else is it. Especially when you consider the dry mouth. Yes, it could all be a coincidence, but what is more likely.

I know what Metformin does and doesn't do. And although it doesn't perform miracles, it stands to reason that if someone is only just managing to keep good control by taking Metformin and eating an extremely disciplined low carb diet, then by removing one or the other of those, the BG levels will go up. It's the same if I tried eating slightly more carbs while on Metformin, my levels would shoot up too.
 
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