Should I keep investigating B12 deficiency or just give up

[Cn13]

Hi Everyone,

I'm looking for advice and help on whether I should keep investigating B12 deficiency or just give up on it. I had a GP appointment yesterday and he is convinced I don't have a problem with B12 these were his reasons.

1. I don't have macrocytic anaemia but I have iron deficiency anaemia so this could be masking the macrocytic anaemia.

2. My B12 result in March was 564ng/l [187-883] he didn't accept my argument that I had been taking supplements.

The reasons I think I have a problem are my symptoms some neurological although some have improved with the iron supplements. I would say my memory problems are still bad. I am still very tired sleep for about 10 hours but feel tired again early afternoon. I have been told I need to be on anti-depressants long term.

The other reason is in 2012 I was being investigated for stomach problems they found out I was anaemic and one report says anaemia not iron deficient. I was told on the phone by the hospital that my anaemia was caused by B12 deficiency. I have got my hospital medical records but there is no B12 test. I am now wondering if I should get my GP records and see if there is a B12 test on there. But not sure if this GP would go with a result from 2012.

I have to wait now for a few months to get any further testing done as this GP had agreed to loading injections in April.

Please could someone give me advice on what I should do next. Thanks for reading.

[clivealive Forum Support]

Do you know if your Folate was tested as this and B12 help iron to make red blood cells and if you are deficient in one or other it will affect the process.

[Cn13 in reply to clivealive]

Hi Clive,

Yes folate was tested this is the result

Serum folate level 10.6 ng/ml [3.1 - 20.5]

The other thing going against me now is the Gp did an intrinsic factor test and this was negative.

Any advice on what you think I should do now please.

[clivealive Forum Support in reply to Cn13]

I am not a medically trained person so cannot really give advice other than to say that sadly the PA test is known not to be 100% accurate.

You could always ask for an MMA test. Methylmalonic acid is a chemical used up in one of the cellular reactions mediated by B12. If there's not enough B12 in the cell then MMA levels will rise. If they're not high then it means your cellular levels of B12 are OK.

Another option would be to join the Pernicious Anaemia Society. It costs £20 for a year's membership and they will give advice and maybe even intercede with your doctor on your behalf.

I wish you well

[Cn13 in reply to clivealive]

Thank you for your advice Clive. I think I will wait until the B12 has cleared my system a bit more and then go for the MMA test. I appreciate your help.

[Gambit62 Administrator]

iron based anaemias cause microcytosis (smaller red blood cells). Folate and B12 deficiencies lead to macrocytosis (larger rounder red blood cells) so the 'non iron anaemia' was probably to do with macrocytosis showing up rather than microcytosis (so you'd need to get hold of any full blood count to see that)

[Cn13 in reply to Gambit62]

Hi Gambit,

Thank you for your reply. I wrote to the hospital that did the tests in 2012 they said in their reply that my blood picture was a normocytic hypochromic one as my haemaglobin was 10.2g/dl [11.5-16.5]. From what I can see from that result it looks similar to still showing microcytosis.

RBC 4.03 x10*12 [3.50-5.80]

HCT 0.307 l/l [0.370 - 0.47]

MCV 76.2 [76.0 - 98.0]

MCH 25.3 [27.0-32.0]

MCHC 33.2 [31-36]

They did not explain why they wrote anaemia not iron deficient on the report. I think there must be pages missing as surely they would have done at least a ferritin test. I was definately told on the phone it was anaemia to do with low B12. The hospital have just said maybe the GP did the B12 test but my current GP said there was nothing in my notes from that time but I wouldn't be sure how thoroughly he looked.

I am thinking I should wait until October to do the MMA test as that will be 6 months after the loading doses. Not sure if it is worth doing Active b12 too.

Just think there is more going on than depression and iron deficiency. I had a blood test for Ceoliac yesterday too waiting for the results of that one.

Thank you both for taking the time to reply.

[Gambit62 Administrator in reply to Cn13]

you could ask GP to remeasure B12 levels - either active of serum B12 (but this only says what is happening in blood and doesn't help with knowing whether the B12 is getting through to cells - which MMA would help with.

[deniseinmilden]

You don't sound depressed: you are too knowledgeable and positive about finding a solution to your problems!

As B12 is so safe you could ask if they will humour you and just trial the loading doses. If they won't it could be worth trying to get a private clinic to do a trial. All first jabs should be done under some medical supervision in case of a very unlikely adverse reaction. If you get a positive response then it would be worth looking into self injecting and taking the necessary supporting supplements to make the extra B12 work.

It is your health that is at stake and if you need it, you need it! Not getting the minerals and vitamins you need will lead to long term decline and damage so it is vital that you get the treatment you need.

Don't give up!

Go for it and look forward to getting your life back.

[deniseinmilden in reply to deniseinmilden]

As I sent my comment more of this thread downloaded and I think you did have loading injections. If you did, were you better as a result?

If so, I would consider self injecting. It costs just over £1 a time, including needles and syringes and the only bad bit is the thought of it before you try it. You would then be in control of your destiny and could be well again.

[Cn13]

Thanks Gambit. My serum B12 will still be high at the moment so might wait until Sept/Oct and get Active B12 and MMA done probably privately as doubt this GP will do them.

Thank you Denise for your vote of confidence. You are right I do want to find a solution to my problems. I will keep fighting! I think yes I did feel better after the loading doses not straight away but after a couple of weeks.

Think I will wait and do those tests and then it's good to know I have the option of self-injecting. Thank you for giving me hope