B12 Low Normal (147)

[Ty-phoon]

Hi, I'm new to this board and I'm hoping someone can point me in the right direction. It's a long story, but I'll try to be quick!

I saw my GP in Feb last year asking for bloods/tests as I'm always exhausted (I wake up tired), I'm struggling to do my job properly (High school maths teacher) and along with severe environmental allergies, I'm utterly miserable and don't have the energy to ride my horse or do any sports which I loved doing. Bloods came back normal, FBC and Thyroid, so I was diagnosed with depression and put sertraline (antidepressant) for 6 months.

In February I saw my immunology specialist as I've had to stop the immunotherapy treatment for dust mite allergy as I was too ill, 2 chest infections, October and November, and then Scarlett fever at the start of January. I can't have the injection if my breathing is poor. I had a follow up in May to discuss further options and we discussed my fatigue, etc. He ran a full range of tests, including B12 and I got a copy of the letter to my GP 2 weeks ago saying my B12 is low normal, Creatinine 86 (normal 36-84) and potassium 3.4 (normal 3.5 -5.something) and to rerun tests. In between the blood test and the letter I started taking a daily B-complex supplement which contains 100μg of B12, I stopped taking this 5 days before my bloods were retaken.

Whilst waiting for the results I've looked up b12 deficiency and it explains a lot, including things I've accepted and normal to me!

slight numbness little and ring fingers of left hand

poor spacial awareness, regularly go over on my ankles, walk into things, mix words up

Dizziness - can be triggered by more than one person talking at once

recently had eyes retested

Forgetfulness, memory loss

poor sense of smell

Depression

Anxiety

Irritability

Sleep disturbances- wake up every couple of hours

Anaemia- now being tested

Generalised weakness, fatigue

Breathlessness - walking up stairs or slight hill

My stomach will spasm/cramp after eating/drinking and about twice a year this is result in me blacking out. First incidence of this was in 2003, caused by drinking orange squash - stomach spasmed as soon as it entered and I blacked out from the pain. I can sometimes avoid blacking by making myself vomit. Epilepsy was ruled out and any doctor has just said "weird", but no further investigation.

I got my latest results yesterday, GP rang to say everything was normal, but I made an appointment to discuss anyway. My B12 level is 147 , possibly higher than should be due to supplement which I told my GP I had been taking. Long conversations short... He's says that's completely fine and within normal range (140-??), I said everything I've read says that's low and especially with neurological symptoms needs following up. Eventually after crying and saying I fed up of being fobbed off I got a non-urgent (1-2 weeks) follow up test for anaemia and if I want to follow up more I need to print out and take him information/guidelines that says I need investigating further. I had already shown him the NHS information that says to test for active and inactive uptake.

Any suggestion of where to go from here??

Thank you for reading!

[wedgewood]

Your B12 level is NOT FINE .It is LOW , very low . as you have been supplementing with B12 tablets . .They obviously haven't helped your symptoms , so I think you need to be tested for Pernicious Anaemia ( Intrinsic Factor Antibodies test, that indicates inability to absorb B12 in the stomach ) . This is unfortunately a very unreliable test . You can have PA , but test negatively . If you test positive you do have PA . A better test is the MMA test , but some doctors have never heard of it . You might have to pay for it .

You don't have to have anaemia if you have PA , that's why the name can be misleading .

You will get replies from people who are much more knowledgable than me ! But I wanted to reply asap . I wanted you to know that you are at the right place for help . Very best wishes .

[clivealive Forum Support]

Your doctor should be treating your symptoms not just looking at his computer screen. You should also ask to have your Folate level tested as this and B12 help your iron make red blood cells and as wedgewood says your B12 is LOW

[Ty-phoon]

Thank you for taking time to reply, it's reassuring to know I'm not making something up when I'm supposedly 'normal'

I will hopefully get some results for p.a. next week and if that's negative I'll ask for MMA test.

[wedgewood]

With a low B12 you are also likely to have a high homocysteine level . ( not good )This is also a good test to get . My GP knew nothing about it . What an admission ! You can get a do it yourself kit from York laboratories , but it's expensive (about £140 I think ) . My homocysteine was high (16) when my B12 was low (150) after a few weeks of injecting it improved no end (7)

[Hoxo]

Your GP doesn't sound like he knows much about B12 deficiency. My advice would be to read up in the subject and then self inject as lots of us do on this forum. Your B12 is low and you have symptoms. NICE guidelines say you should be treated. You could try printing them out and highlighting the relevant sections for your GP. Also you were only on a very low dose of B12 you need a lot more than this to bring levels up. 1000-5000 mg per day sublingual if you are going to take supplements.

[Gambit62 Administrator]

serum B12 is not a gold standard test - using it as a single measure will result in missing 25% of people who are B12 deficient - whilst also pciking up 5% who aren't - so evaluation of symptoms is important. If your GP is looking for signs of macrocytic anaemia these are not present in 25-30% of people presenting with B12 deficiency

Source: BCSH guidelines on diagnosis and treatment of B12 deficiency

onlinelibrary.wiley.com/doi...

the supplemetn may have affected your results but has still left them very low - the amount you were taking was 40x RDA so if you didn't have an absorption problem I would actually have expected your levels to have been a bit higher on the 100mcg

The stomach problems you describe could be caused by low stomach acidity - which would lead to a reduced ability to absorb B12 from your food.

[Shazclark22]

I feel for you I really do - mine was 147 pre loading doses and I felt awful but lucky enough to have lovely gp who was very good..

18 months later I’m feeling much better and off the antidepressants which I never thought would be possible .. your level is low but when it’s treated correctly you’ll feel so much better xxx