My B12 count in December was 2000 it was checked because I felt dreadful and thought I needed extra injections. Why do I still feel so awful

[hello]

My B12 injection has ceased because of this count. However pins, needles and numbness is far worse. My breathing is raspy with occasional sighs this happens more on exercise. Did I have PA do I still have PA. I also had my Active B12 done but they completed the wrong test and still charged me. What should I do?

[Gambit62 Administrator]

Sorry this is so long as I know how difficult concentrating can be when you are suffering.

I can empathise very much with your situation.

If you have a diagnosis of PA then that means that you have an inability to absorb B12 normally through parietal cells in the ileum. That won't be affected by the level of B12 in your blood/serum.

I'm really sorry that you are struggling and a bit concerned that you have had your B12 injections stopped, particularly as you appear to have neurological symptoms. My own experiences with my GP have been rather difficult and I think a lot of GPs don't actually understand B12 Deficiency and Pernicious Anaemia very well if at all. The blood test that is done to check B12 levels in the UK has various flaws - one of which is that it looks at all of the forms of B12 in the serum, not at the one that is actually active in doing all the things that you need B12 to do (produce healthy cells, basically). An active B12 test would be better but that isn't available on the NHS. Your whole serum B12 results are going to be really high if you are receiving injections because each injection puts a huge amount of B12 into your system but your system needs to be able to convert it to the right form and if it isn't managing to do that then you are going to still be feeling dreadful. They shouldn't be repeating the normal test and using those results unless it has been several months since your last test - not sure how many.

Sorry - just re-read your post and notice that you have had active B12 done but that it wasn't done properly - really sorry about this - do you know what the problem was?

Another question would be whether your loading dosages were done correctly - they should have been one every other day until you didn't notice any improvement in symptoms per NICE guidelines, given that you have neurological symptoms

I don't have a magic wand that I can wave to that would make all GPs really understand what B12 deficiency is like - wish I did - and dispel some of the misconceptions - such as those about the accuracy of the tests. You could try giving your GP a copy of 'Pernicious Anaemia: the Forgotten Disease ... or 'could it be B12?'.

Do you know if you were tested for anti-bodies? Intrinsic Factor or Parietal Cell? though even those tests can have their problems in terms of false positives in terms of deciding whether it is just B12 deficiency or pernicious anaemia.

If you have a diagnosis of PA, given that you have neurological symptoms, your GP should not be taking you off injections and you should be receiving injections every 2 months per NICE guidelines.

On a personal note, by trial and error, I have realised that although my ability to absorb B12 through my diet is impaired taking very high doses as tablets did show some improvement for me. However, it was only just noticeable.

Some people find that they can absorb B12 through other membranes (ie not relying on the parietal cells in the ileum) - eg sublingual tablets, sprays (I find a nasal spray works for me but I also need to take very high dosages as it still isn't that efficient) and patches. Some people also find that hydroxocobalamin (which is the artificial form used in UK - cyanocobalamin in US and a lot of other countries) doesn't do the trick for them and methylcobalamin works better but that isn't available on NHS in the UK.

PA is a much more individual condition that most GPs seem to be prepared to accept and I guess that is the real tragedy in all of this.

Another common misconception among GPs is that having high B12 levels is bad for you. B12 isn't toxic. In fact it is used at very high dosages as a treatment for cyanide poisoning. Some people have allergic reactions but if you were one of those then it would have shown up by now.

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Serum B12 levels once on injections are irrelevant, symptom relief is all that matters. It tells you nothing about how much is reaching cellular level where it's needed. The new BCSH guidelines specifically say testing once on treatment is unnecessary. The first thing you must do is insist on the reinstatement of your injections, they are for life and should be at least 3 monthly. The relevant parts of the guidelines are here:

bcshguidelines.com/document...

(C. Treatment of cobalamin deficiency)

"Maintenance treatment for patients presenting without neurological deficit is with hydroxocobalamin 1000 g i.m. every three months. Those with initial neurological deficit should receive hydroxocobalamin 1000 g i.m. every two months. No further testing for cobalamin levels is required. "

(D. Recommendations on the clinical approach to investigation and treatment of cobalamin associated disorders)

"Patients suspected of having pernicious anaemia should be tested for intrinsic factor antibody. Patients found to be positive should have lifelong therapy with cobalamin (Grade 1A).

Patients negative for intrinsic factor antibody, with no other causes of deficiency, may still have pernicious anaemia and should be treated as anti- intrinsic factor antibody negative pernicious anaemia. Lifelong therapy should be continued in the presence of an objective clinical response. (Grade 2A)"

I would write to the GP and Practice Manager asking why your treatment has been stopped and insisting on it's reinstatement. Ask them if they are prepared to accept responsibility for any irreversible neuro damage you might suffer as a result of the withdrawal of your treatment. You already have pins and needles and numbness, that's neuro damage. You should in fact be on alternate day injections until no further improvement (BNF section 9.1.2).

You also need to have folate and ferritin checked, as low levels of these would have prevented your injections from working.

There is lots of good information here:

b12deficiency.info/

And a Facebook Group here:

facebook.com/groups/1749289...

[debkj]

Have you been tested for the MTHFR Gene mutation? Apparently 40% of the population has on type or another. It has to do with methylation and the breaking down of the B vitamins......I'm not an expert and don't know much more than I have it, as do my two sisters. I have the C677T version and am Homozygous.....sounds horrible, doesn't it? Anyhow it's worth being tested. My B12 was 1999 on my blood test last week. Liver values are good - no worries there. Kind of freaked me out, but then my sister reminded me, my body doesn't use it / break it down. The B vitamins are very important for cellular activity. The body can compensate, to a degree but after a while it just doesn't work well. My doctor knows NOTHING about the MTHFR gene and they usually don't test for it. At age 60, I have very few health issues, but about 6 months ago I started having a lot of pain or neuropathy running down my legs and arm.....my sisters on the other hand, have had unexplained health issues ( a variety of things) that their doctors could diagnose. Point being...it's a simple blood test and might help explain some of the unexplainable health issues people have. Just do a search.....lots of info there....lol....I only understand a fraction. And the bottom line is.....this variant gene can cause significant problems for some down the line.

My biggest problem is that the only help I can get is from info I read. Not too many doctors seem to have a clue and they certainly don't test for it. I started taking a methylfolate product because that's what a holistic doctor suggested for my sister. Over all, I feel better, and the aches are much fewer and I'm sleeping better too. Anyhow, It's worth being tested for and may help some explain the unexplained. Just wish the medical world would start learning more about it.....it's hard to filter all the info out there and know what exactly to take and do.

[hello]

Hello

Thank you all for our responses sorry for the late response. All the information is of great help.

Gambit 12 and hampster1 I can remember a test being done that showed positive but it was linked to Lupus and RA and was advised that 10% of the population showed positive however have a feeling I might have had negative IF anti body.

I will look at all the websites again I ay even have B12 tested again apparently St Thomas tested blood for wrong thing and then destroyed it.

Denise Oblien promised to send a test via post which never arrived may also follow that up.

Debkj Thank you ill ask GP about this test .

Once again Thank you all for your replies and links

Hello