info on pernicious anaemia+b12 deficiency

hi all, i recently been diagnosed with b12 deficiency+had the loading program done 2+1/2 months ago, been told i need to have injection in 2 weeks time, then every 3 months for life. Ive also got pernicious anaemia. I feel like i've been diagnosed with this condition and been left to get on with in, no info and no support from gp.My nan died from anaemia but 40 years ago,i told the gp this as he asked if anyone else had this. So basically i feel like sh..t, i'm tired but its a strange kind of tired that i cant explain, i do a lot of exercise+today my right leg went completely numb during a dance class, i loose my balance in classes a lot to, is there anything else i can do to help me feel more like me ?, i also feel very depressed+weepy+i don't like feeling this way. thanks karen xx

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  • Hi,

    I've assumed you're in the UK.

    "my right leg went completely numb during a dance class, i loose my balance in classes"

    The above symptoms might be neurological. The treatment for PA or B12 deficiency with neuro symptoms is more intensive than you are receiving.

    If you have neuro symptoms you should receive loading injections every two days until your symptoms stop improving. This could mean you having loading injections for a period of weeks or even months. Then you should have injections every two months.

    Your GP can check this info in their copy of the BNF (British National Formulary) Chapter 9 Section 1.2.

    Has your GP seen a copy of the "BCSH Cobalamin and Folate guidelines"? These were updated in 2014 and I think the NHS should follow these. I found it very helpful to read these guidelines. I gave a copy of page 29, a diagnosis flowchart to my GP. The flowchart and guidelines mention treatment for those with neuro symptoms and those without.

    pernicious-anaemia-society.org Head office: 01656 769 717

    pernicious-anaemia-society....

    b12deficiency.info/signs-an...

    b12d.org

    "I feel like i've been diagnosed with this condition and been left to get on with in, no info and no support from gp."

    Sadly you are not alone in feeling like that. I have many symptoms of B12 deficiency and/or PA but because my blood tests were negative or normal range I have no diagnosis and had to resort to treating myself.

    The PAS are very sympathetic and I have spoken to the chairman in the past. The B12 Deficiency website is also useful. The person who runs it is very sympathetic as well.

    Useful books

    Could It Be B12 by Sally Pacholok

    Pernicious Anaemia; The Forgotten Disease by Martyn Hooper

    Living with Pernicious Anaemia by Martyn Hooper

    For your B12 treatment to work well, you need good levels of B12, folate and ferritin (iron). Has your GP checked your folate and ferritin(iron) and FBC (Full Blood Count) ?

    I always ask for paper copies of tests. I learnt to after being told results were normal and then finding some weren't when I got copies. There will be a charge for making copies.

    The FBC can give you useful clues as to the health of your blood. It is possible to have both iron deficiency anaemia and B12 deficiency anaemia at the same time. Low iron makes red blood cells smaller, low B12 and/or low folate makes red blood cells larger. If you have both low iron and lowB12 and/or folate then your red blood cells can appear "normal" and doctors may miss problems.

  • thank you so much sleepybunny (yes i,m uk) your info has been very helpful to me, i have noted the info + will be researching myself , i have doctors next week and i will explain and make sure he listens to how poorly+low i often feel as i also thin 1 injection every 3 months will not be enough for me :( thanks once again, i'm reading up on it all now :) x

  • Hi,

    I'd recommend ringing the PAS. I have spoken to them several times.

    A few people see them in person, the head office is in Bridgend, Wales. The chairman's blog on the PAS website is very interesting.If you find Martyn Hooper's books useful then I know he is publishing another one later this year. I cried when I read them as it was like reading about myself.

    Some more useful info for you .

    1) The library section of the PAS website has some useful info/documents including a summary of the BCSH guidelines. The website also has a section for medical professionals which your GP might find useful. You can access a lot of the info without being a member. Membership fee is very reasonable.

    2) bmj.com/content/349/bmj.g5226

    3) ukneqas-haematinics.org.uk/...

    4)You might find it useful to google "Macrocytosis" or Megablastic Anaemia.

    patient.info/doctor/pernici...

    If your GP is not as helpful as they could be it can be useful to take someone with you to appointments....as long as they are sympathetic and supportive and understand your condition.

  • Hi Karen, at last someone on the Island!! Drs won't put me in touch with any fellow sufferers, I have been thinking of advertising to get a group together so we can help each other. I am in Newport, had PA for about 8 years, until I found out about this site I too have been left to get on with it. Thing is I have not met a GP yet who knows a thing about it and they are not exactly throwing themselves at their computer or whatever to find out. I have an appt on 27th with my GP and have written to him asking for a specialist. Just about to get someone to sort out my laptop as it is doing alarming stuff since loaded Windows 10. Hope you see this really soon so we can start talking about our PA, maybe we can help each other and find others over here. It is absolutely horrid and you feel such a twit trying to explain to anyone how really ill you feel. Look forward to being able to chat even meet up. I am 60 by the way. Take care, Marcelle

  • hi Marcelle, thanks for replying if you start up a group i would certainly join, i think its bad that gps don't take this illness seriously, do you have b12 deficiency as well? i do :( all my gp said to me was "yes the 2 conditions go hand in hand" that didn't help me.

  • I had blocked drains so could not get to my appt with my GP Friday. After sitting with the phone ringing merrily for 35 minutes today, the appt answered and somehow I got an appt for17th. GP wrote before his holiday to say blood tests show very low iron so ought to see me when he got back!! I checked to see if he had brought my injections down to 6 weeks and he had, so injection Thursday. I asked for a ring back tomorrow, I want to know if he has done anything about a specialist and have a shot at asking for the Methyl Folate on prescription at least. Duh, doubt my chances but maybe I can get my injections even more often. Feel very yuck as was almost due my injection anyway. How are you doing? When I have my injection will voice putting up an ad on the surgery board, or ask GP on 17th. Perhaps we could get together, go for coffee somewhere and compare notes, it may do us good to have a partner in crime who knows what each other is going through. Take care, just going to zap round to Morrisons before it pours down, looks like it will be any minute! Take care, Marcelle

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