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Pernicious Anaemia Society

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Hello, I'm a newbie

daftfairy profile image
daftfairy

Hi Everyone

I'm new and I was diagnosed with PA in 2006 after suffering 30 years with anaemia related symptoms and not getting any relief from medication.

At present, I am feeling pretty low and feel like I am going mad, I say one thing but apparently I say something completely different, I feel detached from everything and I am struggling to do the simplest of things.

I have B12 every three months, my last being in February, my GP refuses to give me more because he says my levels are too high. I have tried to explain the reasons why I need them regularly but he does not know much about PA and my consultant is useless and does not want to listen.

All I want is someone that I can sit down with face to face and get answers, I don't think that is too much to ask and there are no support groups in my area (Essex). I am seriously considering setting up a group.

Sorry to moan but just totally exhausted and fed up.

13 Replies

Hi - every one goes to bed early on this site except me. There were some Essex people talking about meeting informally a year ago. If you put Essex Meet into the search you will find the people to contact, scorpiojo was the poster.

Dear daftfairy . You have come to the right place ! You will get help and support here . I had to resort to self injection of B12 in order to get better . I had a GP like yours . I inject weekly and it has changed my life ! It is not expensive if you buy in bulk -about £1.00 everything included . B12 ampoules from German online pharmacy ( versandapp.de in English ) €55 for 100 ampoules and everything else from Medicare needles syringes swabs and sharps box . Plenty of folate /folic acid is also important( vitamin B9) it acts together with B12 . You will get more help from experts on this site . It’s the middle of the night now I must get back to sleep ! All the very best !

clivealive profile image
clivealiveForum Support

Hi daftfairy

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.

Your doctor should be treating your symptoms not just looking at the computer screen.

The British Society for Haematology guidelines say "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

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

If you have Pernicious Anaemia with neurological symptoms then you should be having your injections of hydroxocobamalin (at least) every eight weeks and not twelve.

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even re-start you on loading doses "until there is no further improvement" 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...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

I'm not a medically trained person but I've had P.A. for over 45 years and I wish you well.

Gambit62 profile image
Gambit62Administrator

daftfairy - you could also try joining and contacting the PAS directly - they should be able to give you some more tailored advice and support in dealing with your GP - but no guarantee and they are mainly volunteers so can be very stretched.

pernicious-anaemia-society....

pernicious-anaemia-society....

Gambit62 profile image
Gambit62Administrator in reply to Gambit62

also - has your GP done any tests for other possibilities - eg hypothyroidism. 40% of people with autoimmune gastritis go on to develop auto-immune thyroiditis ... though personally I wouldn't expect miracles if it does turn out to be hypothyroidism (treatment regime dominated by blood tests and patient symptoms mean absolutely nothing ... sorry feeling a bit jaded at the moment)

daftfairy profile image
daftfairy in reply to Gambit62

Hello Gambit62

Yes, I also have low thyroid and take Levothyroxine

You look great with that tree growing out of your head !

daftfairy profile image
daftfairy in reply to wedgewood

Ha Ha, thank you Wedgewood. I like to think of it as my brain but I don't think it has that many branches if any at all. well and truly in la la land at the moment. "Such Fun"...

Hello Eaoz

I have tried keeping a diary but I either forget to write in it or I pick up a pen and my mind goes blank

Well I hope that you feel a bit comforted by the advice and support you now have . You CANNOT overdose on B12 . So nothing to worry about there . If you do eventually decide to go down the self-injection route , get back here for instruction and tips .

Hello daftfairy, welcome to the group. I too have underactive thyroid and low B12 and live in Essex. Until I persuaded my GP to increase my injections to every six weeks, I used to use a B12 spray to top my levels up. This worked quite well for me, but I know it doesn’t suit everyone.

I’ve found a huge difference getting the injections every six weeks, and no longer feel as though I have a battery that is running down over the last few weeks before the next injection is due.

Let me know if you plan to start an Essex support group?

Best wishes

MariLiz

daftfairy profile image
daftfairy in reply to MariLiz

Hello Mariliz

I am currently looking for a suitable venue to hold group meetings as soon as I locate one I shall let you know, hopefully, I shall start the first meeting in the New Year.

Best Wishes

Daftfairy

Supplement with sublingual. I do and they are helping. You don't need to feel like this. I take 5,000 everyday plus foluc acid.. Or you can order b12 injections on line. Although I don't think they are the right kind.. Good luck to you..

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