Please read this before using this forum - Pernicious Anaemi...

Pernicious Anaemia Society

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Please read this before using this forum

8 years ago•6 Replies

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'

Please also read our terms and conditions on our website. pernicious-anaemia-society....

By using this forum you agree to our rules/terms and conditions.

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

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6 Replies

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Kittycaite8 years ago

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

PAS-adminPartner• in reply toKittycaite8 years ago

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.

Kittycaite• in reply toPAS-admin8 years ago

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 ?

Many

Kittycaite• in reply toKittycaite8 years ago

Thanks xxx

Sorry phone jumping :/

20ard20ken8 years ago

This given me a fright I got some methycobalamin patches after reading this I am wondering if I done something silly.The strength is 1200mcg and 400 of folic and daily value not established

FoggymeAdministrator• in reply to20ard20ken8 years ago

Hi 20ard20ken. It's not quite clear from your reply what exactly you are worried about 😄.

So just a couple of things (which may or may not reassure you 'cause I'm not quite sure what you're asking):

The post above is not saying that methylcobalamin is not safe to use - just that it is not licensed for injection in many countries - although it is in some.

Methylcobalamin is freely available over the counter or via the internet in tablet, lozenge, nasal spray and patches.

Many internet sites promote methylcobalamin as the 'most superior' or 'active' form of B12 (cobalamin) - so there's a lot of hype and misinformation floating around out there. The post above just makes it clear that the majority of people do very well with hydroxocobalamin and thqt there are very few who actually need to use methyl.

Different people find that different cobalamins work for different symptoms and it's often the case of finding what works for you. Some people use a combination of the different cobalamins because they find that different cobalamins work for different symtpoms - for them. Some manage quite well using only one type of cobalamin. Some have problems with a particular cobalamin - for instance methyl gave me a thundering headache and was no better for my symptoms than hydroxocobalamin - so I went back to hydroxocobalamin (that's the main type of B12 prescribed in the UK). So really, it's a case of finding what works best for you.

The post also contains advice about consulting your doctor if B12 deficiency is suspected...and not taking any B12 supplements before you do this. Taking supplements can skew blood tests and this will mean that it is difficult to get a proper diagnosis, and hence the correct treatment.

And it's always wise to tell your doctor if you are taking any type of supplements. Some can interact with other medications, over supplementation can cause problems (though I do not include B12 in this)...and it's always important to rule out any potential underlying health conditions, which often have symptoms very like the symptoms of B12 deficency.

Anyway, hope this puts your mind at rest. If there's anything else you're worried about or you need help with B12 deficency / PA issues, please put up a new post in the main forum and people will pop along to advise and help you.

Note: this post is an information 'pinned post' and any replies put here won't be seen by forum members (only by people who have followed is post). I only spotted your reply here by accident so...I'm going to turn off the reply function to this post...just prvent more replies which may go unnoticed 😖. So...if I haven't covered the things you may have been worried about....post in the main forum for more answers 😄

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