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This forum is an initiative of the Pernicious Anaemia Society. It is intended to share knowledge, experiences and opinions related to a pernicious anaemia, and everything that comes with it.

Opinions expressed on this HU Forum are the users’ own, NOT those of The Pernicious Anaemia Society, and should NOT be considered to be a substitute for medical advice. You should consult a qualified medical practitioner if you have any concerns over managing your own health. Professional medical advice should always be sought before starting or changing any course of medication, therapy or treatment.

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). For testing intrinsic factor antibodies: keep one week between an injection and the test.

You should always discuss taking additional treatments with your doctor before going ahead with sourcing additional injections.

You should always be supervised by a qualified medical professional before receiving a first injection as in rare cases the patient can develop an anaphylactic shock to the injection. We also advice to get training from a professional on how to inject.

BE AWARE !! : Always inform your doctor about the supplements you take, or want to take. Not all supplements are harmless, some can have undesirable side-effects. This is especially true if you have kidney, liver or heart disease. Do not take potassium in supplements unless monitored by a health professional. Be careful with any supplement that is high dose supplements and consult a health professional when in doubt.

If you experience an increase in symptoms after starting a supplement (or any medication at all) please consult with your doctor.

In 90- 95% of the patients hydroxocobalamin is fine and the correct treatment. Methyl injections are not licensed as official medication in most countries. Only a small number of patients require methyl.

The following is from a haematologist, an expert on B12:

'Research showes, and that is our clinical experience, that hydroxocobalamin i.m. (or deep s.c.) injections are the most proven superior treatment in B12 deficiency. Certainly with neurological and psychological symptoms. Hydroxocobalamin facilitates both pathways (conversion to methylcobalamin and adenosylcobalamin) and it works in a more natural way. There are pathways in the complex metabolism/conversion to active forms that we (& the clinical chemists who we work with) do not yet know and which we therefore deliberately do not want to skip.'

'The comment "it skips the conversion process and helps directly in the active form" we think of as an unscientific approach - t put it mildly. In addition, hydroxocobalamin is an anti-dote of (cyanide)toxins which is partly due to its complex molecular structure'

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And please read our other Pinned Posts for information on Pernicious Anaemia and B12 deficiency and/or visit our website.

4 Replies

  • Hello Admin :)

    Is it possible to have the name in a private pm of the haematologist who wrote the above ?

    As I'm trying to find one with PA and B12deficiency knowledge as my last one had not a clue ! :/

    Many thanks xx

  • He's Dutch so unfortunately it won't help, sorry :( He's starting the first ever B12def Diagnosis and Treatment Center & founded the B12 Research Institute.

  • Ah okay . Let's hope he succeeds ☆☆☆

    While I think of it !!

    Has anyone acquired a diagnosis from Europe ( as ranges are higher etc ) that was accepted by UK GP ?


  • Thanks xxx

    Sorry phone jumping :/

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