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[JojoDee]

I am new to the Pernicious Anaemia Forum but have had the condition for 20 years since it was diagnosed along with an Under-active Thyroid. In recent years I have Vitiligo patches on my forearms and scalp, where the areas are increasing year on year.

I have been interested in supplementing B12 between injections, which I have every 12 weeks. I had my recent injection 4 days ago where I complained of having a sore tongue and the nurse agreed to take some bloods and test for B12 (still awaiting the results). Does anyone else experience a sore tongue, that does not interfere with sleep, tends to improve slightly after rest but then gets sorer as the day progresses? I also suffer from morning dry mouth. I have tried and am starting again using a B12 boost spray but are sub-lingual tablets better and if so where is the best place to purchase them.

[clivealive Forum Support]

Hi JojoDee If you are in the U.K, have P.A and have neurological symptoms your injections should be every eight weeks according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

It is also important that your Folate level is monitored as this is essential to process the B12.

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.

Personally I use a methylcobamalin B12 oral spray between injections.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

[Hidden]

Hi, good advice from Clive to have folate levels checked, folic acid deficiency is closely related to vitiligo and a sore tongue could be attributed to an iron deficiency so best to get your iron levels checked out as well if you can.

Here is a link on vitiligo and B12/folic acid which you might find useful/helpful:-

progressivehealth.com/b12-v...

[Gambit62 Administrator]

not really much to chose from in respect of sublingual spray or tablet - which are only just better in terms of absorption than oral tablets - around 1% absorbed.

nasal spray seems to be a bit more efficient - around 3 % absorbed.

not come across any studies on skin patches.

Unfortunately, as with most things B12, the only way to know what works for you is to try it for a while and see.

The supplementation is about maintaining your levels after a shot so would suggest you start now - and if you want to try varying/increasing the dosage that shouldn't be a problem as B12 isn't toxic.

[Gambit62 Administrator in reply to Gambit62]

Quite possible that serum B12 isn't going to show anything useful at this point - looking at MMA (a toxin that builds up if your body doesn't have enough B12 to recycle it) is more likely to be useful in showing whether your cells really do have enough B12 - but you may need to be referred to a hospital for that.