B12 and the lack of understanding!

[ck7027]

I have been feeling oh so tired and I know it is because my GP has refused to reconsider the injections I was having earlier in the year. He said my levels were fine although did not share any relevant information I.e blood test results. Is the refusal to help down to cost or what I have read regarding over dosing? My level is currently running at 187 which he said is normal.

Any insight please?

[wedgewood]

This is so awful for you ! 187 is a very low reading and is NOT NORMAl . It has to be bourne in mind that whatever the reading , up to 80 % of the b12 is not available to your body . (Inactive b12) Have you been tested for the antibodies to the Intrinsic Factor? A positive result would prove pernicious Anaemia . A negative result does not disprove it, as it is a notoriously unreliable test .There are 2 other tests which are better but no test is 100% accurate. Your symptoms should be treated , not blood test results . You need to find out the reasons for your very low b12. Are you vegan or a strict vegetarian ? This can be a reason as b12 is obtained solely through animal products . Having very low or no stomach acid (hydrochloric) results in very poor absorbtion of b12 and other vitamins and minerals . This is a particular problem for PA patients ( gastroenterologist told me this ) . It's a problem for B12 in particular as it is a difficult vitamin to absorb .

Have you had any stomach surgery ? This can also affect your B12 absorbtion . Do you take any PPIs eg Omeprazole or Metformin for diabetes ? These medications will rob you of B12 .

The cost of the injections is very low I have to self inject as the statuary one every 3 months as a PA patIent is nowhere near enough for me I have just bought 100 from Germany for £55 . Needles and syringes are also cheap when bought in bulk . ( also 100 at a time ) So for the NHS it is even cheaper ! Then there is the nurses time as well . Say 5 minutes .) Some surgeries have nurses who are paid for by the big pharmaceutical companies !)

You could also try b12 tablets but if you have an absorbtion issue , they will not help you , but will boost your apparent B12 values in your blood drum test . It all depends on the reason for your malabsorbtion .

So why the reluctance and ignorance on the part of doctors ? It's a long story , which I don't want to go into here , because it INFURIATES me ! You need to go armed with scientific documents to your doctor. Other members have the necessary links for you . This doesn't mean you will get the correct treatment . You may have to resort to self -treatment , which in my case is self-injection.

Also remember that you need plenty of folate ( B 9) to with together with B12 . Also attend to any lack of stomach acid by drinking some diluted organic apple cider vinegar . Some people take betaine hydrochloric acid capsules if it is severe ( Google for information) Also make sure that your stomach flora is healthy by eating probiotic foods daily ( raw organic sauerkraut) etc ,or probiotic capsules

It is a complicated story , but it can be resolved . Get back to us if you have any queries . Best wishes to you !

[PAS-admin Partner]

Welcome. Unless your deficiency was because of a lack of B12 in your dite or something that was resolved (like medication you're no longer taking) you have an absorption disorder and injections should have never been stopped! That your level now is again at deficiency level (which it is! It is nót normal) says it all, you need immediate reinstallment of injections.

By law they have to give you your bloodresults (at least I assume the law is the same there) so I would push for that. Did they test you for causes earlier in the year like pernicious anaemia?

Please have a look at the Pinned Posts and give your GP some scientific info and especially the guidelines.

There is no overdosing with B12 (see pinned posts as well), testing after treatment (even if its 6 months ago)and then saying it's ok is bad practice (see also pinned posts) and costs can never be a reason (besides, B12 is cheap)

Insist you get injections again, starting again with the loading dose. Make a little info pack with ao this: onlinelibrary.wiley.com/doi... If he refuses ask to see a specialist or get another GP.

[clivealive Forum Support]

Hi ck7027 I'm not medically qualified.

Is this yet another case of a doctor reading his computer screen instead of listening to his patient?

But I'm a bit confused by you saying "My level is currently running at 187 which he said is normal."

I realise that different labs may well use different ranges but my latest serum B12 test range started at a low 187 up to 883 so if the same ranges apply to your test results there is no way your doctor could say it's normal bearing in mind your symptoms and the fact that you were having injections earlier in the year.

Do you know why you were B12 deficient in the first place as others have asked?

[fbirder]

my latest serum B12 test range started at a low 187 up to 883

There's not only the problem of different labs using different tests to give different ranges, there's also the problem of different labs giving results using different units. 187 ng/L (or pg/mL - they're the same) would be the same as 138 pmol/L - the other commonly used (and likely to become more popular) units.

So if your test reports ng/L and ck7027 uses pmol/L then 187 could be bottom of the range for your test, but in-range for hers).

[Hidden]

My local lab tests have the range at 110-900 ish, ng/l

so if yours is anything like that your GP, who is just looking at the test results will think you are well in the normal range. I was told that 118 was in the normal range. As others say you need to know what the range is, but you need to see the full test results.

[Gambit62 Administrator]

The big problem with the 'normal' ranges is that they are based on statistical averages - so although many people will be okay at these levels a significant number of people may not. B12 seems to be something where people can vary quite a lot.

Another misconceptions that may be confusing your GP is an expectation that some form of anaemia has to be present (generally macrocytosis) so no sign of that and B12 isn't a factor.

This misconception tends to get compounded by a poor understanding of how B12 is used by the body and an erroneous belief that it is macrocytosis that causes the symptoms ... and that it is all about the amount of B12 in your blood - when actually that is only one part of the story as the real problems occur at the cell level and the amount of B12 in your blood doesn't provide any real indication of how much is getting through to your cells and whether it is being processed at the cell level. Treatment should be based on symptoms not on amounts in your blood.

Assuming that you are in the UK you are entitled to copies of your medical records - there can be a small administrative charge for making copies etc but legally this charge has to be small as it would be against the law to try and use charges as a way of discouraging patients from obtaining copies of their medical records.

What lead to you having injections earlier in the year? Does your GP think that you were deficient and the problem was lack of B12 in your diet?