B12 deficient? What next

[dansakman]

For 3 years in gradual progression I started to feel tingling in left toes and then left small fingers and a tired feeling left arm. Neck ache. Had dull headaches consistently on right side. This along with tinnitus and issues with memory loss and being unable to process information in quite the same way.

I pursued some investigations into MS and neck ache and got nowhere with those. I left it for a year or so.

Recently tingling started on right small toes and right small fingers and the sensations on the left side got worse.

Then I had a discussion with my older sister and discovered to my surprised that she had had similar symptoms and suspected B12 deficiency but got nowhere.

She also told me that our grandfather nearly died from PA in his 60s because he had diabetes some of the tingling symptoms he had were assumed to be related to that

When I presented this to my very good NHS GP he has decided to take my complaints more seriously.

He arranged for what the practice nurse described as "rolls royce" blood tests - not sure what that means exactly for B12 testing but covering B12 and folates and checks for diabetes.

The test results came back and he said I was only just within normal range: 191 when normal range is 180 upward.

I took the results from him over the phone at work on a bad line and agreed what was to happen next but I'm not sure if I have agreed to the right things.

What I have seem to have agreed to is a course of oral B12 for a few months and a repeat blood test.

He feels that my symptoms do not sound like classic PA symptoms and given that it is unclear whether the B12 deficiency is diet or absorption problem does not want to commit to injections.

He also feels that further tests for absorption problems are not always conclusive.

My worry is that if the test I have had is based on simple serum blood test that taking oral B12 and a repeat blood test will measure an increase in B12 but possibly only inactive B12 and so I cannot really know if this treatment will be effective.

Furthermore diet seems unlikely I am not vegetarian or vegan I can and do eat all sorts of B12 rich foods.

Grateful for any thoughts.

[rosyG]

Hii,

My reading was 140 and discovered after test because I had different autoimmune problem

I don’t know why your GP isn’t now testing for antibodies re intrinsic factor etc - I hadn’t had any of the tingling you have had. I would ask for second opinion or see sane GP and say you don’t want to run risks and press for more tests

Hope all goes well

( I now have regular B12 injections and no problems- last six years)

[fbirder]

It doesn’t sound as if your deficiency is caused by diet. If it is an absorption problem then you won’t absorb the B12 from the tablets (they will be fairly low dose - 50 mcg of cyanocobalamin) and your blood levels wont rise much, if at all.

If you do absorb from the tablets, and your blood levels rise significantly, then it will be both types, ‘inactive’ and ‘active’ B12. You don’t absorb one or the other.

However, it would be preferable if your GP didn’t make the assumption that it’s caused by diet. I would ask him to follow this NHS protocol and start you on injections to see if it ameliorates symptoms.

hey.nhs.uk/wp/wp-content/up...

[dansakman in reply to fbirder]

Yes you are correct 50 microgram 3 times a day. Seems tiny compared to what is available off the shelf.

I'm confused also about injections vs oral tablets.

Maybe the GP is planning to confirm an absorption problem by seeing if oral B12 makes a difference.