vit b 12 deficiency

[diamck]

Just recently been diagnosed with vit b12 deficiency and have just finished my loading dose. Feeling so much better ,wake up refreshed ( cant remember ever feeling this !). However just a little concerned about my tingling in feet hand and side of face and my lightheadedness. I am hoping it is early days yet and these symptoms will go away

[fbirder]

Your GP should follow the guidelines in the British a National Formulary, which state that the loading doses (1mg intramuscular 3x per week) should continue until there is no further improvement in the neurological symptoms (your tingling extremities).

[Lisahelen]

Many of us still suffer symptoms on and off after loading. It has been said that its our bodies reaction to it and that feeling worse before we are better seems common. My gp told me it can take months before a positive effect and so wont give me any more at present, even though technically i still have symptoms 6 weeks after loading.

[Sleepybunny]

Have you had tests for PA (Pernicious Anaemia)? These might include an IFA (Intrinsic Factor Antibody) test.

Some people experience an increase in symptoms after starting B12 supplements. I think it might be the nerves "waking up" when this happens.

More info on these websites

pernicious-anaemia-society....

b12deficiency.info/

b12d.org

Are you in the UK? The PAS are helpful to talk to and there is useful info on website.

If you leave a message they will get back to you.

01656 769467

fbirder mentioned the BNF Guidelines for people who have B12 defic with neuro symptoms says loading doses should continue until improvement stops. this could mean loading doses over a period of weeks or even months. Fbirder is right about tingling being a neuro symptom. After loading doses have finished, people with neuro symptoms should have an injection every two months.

Some GPs are not aware that the treatment for those with neuro symptoms and B12 defic is different to the treatment for those with b12 defic without neuro symptoms.

Some patients find they are given the standard treatment which I think is six loading doses then injections every three months. The info that the GP needs is in Chapter 9 section 1.2 of the BNF.

Do you have other neuro symptoms? Does your GP know all of your symptoms?

pernicious-anaemia-society....

PAS have a symptoms list in library.

b12deficiency.info/signs-an...

Other useful documents/articles

ukneqas-haematinics.org.uk/...

bmj.com/content/349/bmj.g5226

Google "BCSH Cobalamin and Folate" Guidelines

Useful books

Could It Be B12 by Sally Pacholok

Pernicious Anaemia; The Forgotten Disease by Martyn Hooper

Living with Pernicious Anaemia by Martyn Hooper