Pernicious Anaemia Society
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Newbie getting good vibes - Hello!

Hey everyone,

I'm Katie, 34, from Glasgow. I've recently been diagnosed with PA after presenting with a painful tongue, tingling in arms/hands and fatigue. I had previously heard of PA (more so low b12) but didn't connect it to other symptoms that I have been living with for years.

It's been 3 weeks since I completed my loading dose and still have quite a few issues going on, but I'm being patient :)

Just wanted to say how amazing it is to stumble across others suffering with PA and say thanks to everyone who has given advice and support on here. I've only been reading this so far, but I already feel so much more knowledgable – thanks.

I also suffer from psoriasis and psoriatic arthritis (the other autoimmune PA) and I know that conversing with others who know how you feel is half the battle.

Feeling positive about this community already - hope to talk to more of you soon.


8 Replies

Welcome Katie!

You can find some info in our Pinned Posts on the homepage of this forum (on the right) Have a look also at the BSH guidelines that state: Current clinical practice within the UK is to treat cobalamin

deficiency with hydroxocobalamin in the intramuscular form (outlined in the British National Formulary, BNF, http://

Standard initial therapy

for patients without neurological involvement is 1000 ug

intramuscularly (i.m.) three times a week for 2 weeks. The

BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement.

As you have neurological symptoms it might be worth talking to your doctor about that last sentence as you write you completed your loading dose, and I'm assuming they put you now straight on maintenance.



(British Committee for Standards in Haematology)


Hi Ktg_uk not much more to say really except well done for being a "patient patient".

I am not a medically qualified person but, from my own experience sadly, it may be some time before symptoms ease as there is a lot of repair work to be carried out on your nervous system by the B12. Do you know what your Folate level is as this is essential to process the B12 injections you are having?

There is life after P.A. as I've had it for 45 years and I'm still "clivealive" at 75

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I think tingling is normally considered to be a neurological symptom.

Page 8 in the "BCSH Cobalamin and Folate Guidelines" gives details of UK B12 treatment for B12 deficiency for those with and without neuro symptoms. The info is based on BNF (British National Formulary) Chapter 9 Section 1.2

People who have B12 deficiency with neuro symptoms are supposed to get loading injections every 2 days for as long as symptoms get better then maintenance injections every 2 months.

Have you got other neuro symptoms? See links to symptoms lists below.


I am not a medic just a person who has struggled to get a diagnosis.

UK B12 websites

pernicious-anaemia-society.... Some people on this forum are members of the PAS (Pernicious Anaemia Society)

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

"Could It Be B12" by Sally Pacholok and JJ. Stuart

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I found out that some areas of the UK are using local NHS guidelines for B12 deficiency that have not been updated since the BCSH Cobalamin guidelines came out in 2014. Some Gps may not be aware of the BCSH Cobalamin guidelines. I gave my Gps a copy of these guidelines and a copy of Martyn hooper's latest book.

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Hi Katie, just wanted to say hello and welcome i'm new too but have found a lot of good advice from everyone on here.

Best wishes to all

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Welcome aboard, Katie! This forum has helped me so much and people that post here are so knowledgeable about all things B12! I have learned so much myself.

Take care :-)

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Hello ktg_uk and welcome. I can totally identify with having symptoms that you didn't know were symptoms...for years!

Pleased that you now have a diagnosis and have started on treatment.

I note that you say you finished your loading doses three weeks ago and, as others have said, because you have neurological symptoms it's important that your GP has you on the right B12 regime., in order to prevent the potential for irreversible neurological damage.

The regime should be every other day until no further improvement (for some people this takes many months) and then every eight weeks....yourGP may not know this.

If you still have symptoms after your loading doses and you are not on this regime, it might be a good idea to go back and ask your GP for the more frequent doses (many GP's mistakenly believe that every three months is sufficient).

The treatment information is contained in the medic's prescribing 'bible', called the British National Formulary (BNF)... Your GP will have a copy on the's the second item down so s/he will have to read a little further than they usually do 😀.

Apologies if you already know all this....

As you say, this is a brilliant place for getting knowledge and support...much needed when dealing with sometimes ill informed medics....we B12 deficients need all the help we can get, so you've arrived in the right place.

Hope all continues to go in the right direction and we'll look forward to hearing more from you...please post away if you have any questions....someone will always pop along to help.

Take care xx

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