Pernicious Anaemia Society

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In 2011, my B12 was 337 & I was put on methyl B12 shots & felt better. New doctor had me do cyanoB12 shots & I felt no improvements. I asked him by phone to order tests for B12 anemia & he wants to talk in person ($200 visit) because he doesn't think all the tests are necessary & that they are expensive. Where can I order the tests, on my own, that are needed to rule out B12 anemia? Thank you!

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Hi Amhoy I assume you are in the U.S.A. so I cannot help you with where tests can be done.

You say that 7 years ago you were given Methylcobamalin B12 injections - how long a period between then and your "new doctor" prescribed cyanocobamalin shots or have you been having injections continuously?

Here in the U.K. "taking supplements that contain B12 will affect any tests ordered by your doctor to assess your B12 status. You should not take any supplement with B12 before having your B12 assessed (including MMA/homocysteine/Active B12)".

Do you know what your Folate level is?

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Hi cliveslive. Thanks for your reply. Yes, I am in the US. I think I found where I can get labs... accesalabs.com/cart

I was getting methyl injections after B12 tested 337 with no supplementation & folate was 27.3 (might have supplemented?) from 2011 to winter 2012. Stopped once we moved out of state & started up again in August 2017 with cyano injections.

In 2016, I was taking B12 drops and my B12 was 873, my folate wasn't tested.

Also, my son tested high positive for folate receptor antibodies & diagnosed with Cerebral Folate Defeciency in 2011. Do you know if there is a connection to pernicious anemia?

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I'm sorry I'm not medically trained so cannot answer your question about "folate receptor antibodies" except to say there is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

Much against the norm here in the U.K. I have been having monthly injections of cyanocobamalin 1mg B12 injections for 46 years since I was diagnosed with P.A, in 1972. When hydroxocobamalin was introduced in the mid 1980s I had an adverse reaction and couldn't last the three month intervals so reverted back to the cyano which I now have every three weeks.

As far as I know the amount of cobamalin in cyano, hydroxo and methylcobamalin 1mg is the same.

I wish you and your son well and hope you find some answers.

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