Advice on B12 Injections Please

Posted , 3 users are following.

Hi,  hope you can help,

I have been diagnosed with 'borderline B12 deficiency'  (after 1 year!)

Here are my results from July 2014:

Serum B12 232 ng/L

Serum folate 9.6 ug/L

Serum Ferritin 88.9 ug/L

Doctor did nothing at that point.  

I started a Multivitamin (which included folic acid, B12, B6, Biotin) daily.  And also boosted myself with an extra B12 tablet once a week. (250mcg10000%RDA)

Been retested 1 year later. Here are the results:

Serum B12 218ng/L

Serum Folate 7.5ug/L

Serum Ferritin 90.4 ug/L

Am even lower this year dispite vitamins !  Think I must have a problem absorbing B12 because I do eat healthily. One of my symptoms is diarrhoea, sometimes my food seems to go right through me. I have wind, bloating, tiredness, achy legs etc.

Are these B12 deficient symptoms ?

My doctor said I have not got Pernicious Anaemia, my haemoglobin fine ?

I dont want my B12 levels to drop any more and insisted he do something.

He prescribed me cytamen injections. 1000mcg injections, one a month for 5 months. First one tomorrow.

I realise I should be happy that they are treating me (I know many people have to get a lot worse before they are treated)

But is cyanocobalamin safe ? Am I on correct dose ?  I thought hydroxocobalamin was nhs prefered option ?

Am a bit nervous about injection tomorrow afternoon.  Any advice very welcome.  Thanks for reading.

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4 Replies

  • Posted

    Hi Brian, you are right, it's usually hydroxycobalamin in the UK. Plus the usual treatment is six injections over two weeks, called loading doses. If you want clarification I suggest you look at the Pernicious Anaemia Society site. They have a full checklist of symptoms on there that can be downloaded and printed out, so you can take the list to the GP with you. They can also give you the guidelines for treatment, as it sounds as though your doctor isn't following these. I am unfamiliar with cytamen? Is it a brand name for cyanocobalamin? Hope you will soon be feeling much better. Marion
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  • Posted

    A lot of doctors totally misunderstand what Pernicious Anaemia / B12 deficiency is. Haemaglobin can be fine, but you can still have Pernicious Anaemia. Also your symptoms are very typical . I suggest you read the book by Martyn Hooper "Pernicious Anaemia, The Forgotten Disease" or "Could it be B12?" By Sally Pacholok. They will inform you about things you need to know, things to ask your doctor, and advise you what you can do to help yourself. Marion
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    • Posted

      Thanks for replying and your info.  Will def get those books.

      What blood test would I need for PA ?  I would like to get tested even if it's to rule it out.  Would I have to stop B12 injections/Vit tablets for the PA test ?

      Yes, Cytamen is name for cyanocobalamin. Don't know why I didn't get hydroxycobalamin ?!

      Thank you so much.

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  • Posted

    Hi Brian, the blood test looks for antibodies and Intrinsic factor (which is the bit in your digestive system that helps with absorbtion of B12). The real thing is B12 deficiency needs treating regardless of whether it's called Pernicious Anaemia or not. If you have antibodies they destroy your bodies ability to absorb B12 from your food.

    Without it we can develop nerve damage, which can become permanent if the deficiency remains untreated. Any numbness, pins and needles, loss of balance, can all be caused by this. I was regularly hitting into the walls when crossing the landing to the bathroom at night, hitting my shoulders on door frames etc.. 

    Once you begin treatment it will have an effect on any blood tests you have from then onwards. The Pernicious Anaemia Society will answer questions for you, and deal with all forms of B12 deficiency not just PA. Acute gastritis can cause B12 deficiency because food never stays in the stomach for long enough, and the stomach lining becomes damaged. Crohns disease, and Coeliac disease also cause deficiency. You will learn that you need to become more knowledgable, as ordinary GP's and a large number of consultants believe it is a blood disorder only. I think you would need to stop treatment and supplements for around three months to get a true test result, but the antibody and Intrinsic Factor tests aren't 100% accurate. So get your treatment started, and read up on things as much as possible. Good luck with everything. Marion

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