Hallelujah

5 months to get to see a consultant and finally I speak to someone who knows about being b12 deficient.

He confirmed I have b12 deficiency through malabsorption and since 2012 and he's telling the Gp to start the loading doses then to give me b12 for life.

He wouldn't go as far as to agree to the neurological regime 'because I don't have pernicious anaemia' but advised loading doses and injections three monthly for six months.

He referred me to the neurologist too.

I'd call that a result.

It was especially nice to speak to someone who understood and wasn't the slightest bit dismissive.

Today is a good day 😃

Massive thanks to the everyone on here for helping me to get this far.

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24 Replies

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  • good news though a bit sad that he wouldn't agree to recommend more frequent injections - not clear what he meant by 'pernicious anaemia' either ... it is having an absorption problem that is the real thing to focus on not what caused the absorption problem ...

  • Excellent news Steap progress at last.

  • What area of the country is this consultant?

  • Darlington in Co. Durham

    He's a general physician in an NHS hospital.

  • I am in Darlington and have been trying to see someone like this for ages. My lung consultant has written to my GP asking him to refer me. Would you kindly pm me with his name?

  • Pleased to hear you had a positive result.

    Not sure why he wouldn't agree to neurological regime becuase my understanding is that in UK this applies to all b12 deficient patients who have neuro symptoms not just those with PA.

    BNF Chapter 9 section 1.2 seems to concentrate on PA

    evidence.nhs.uk/formulary/b...

    but BSH Cobalamin and Folate Guidelines seems less specific.

    b-s-h.org.uk/guidelines/gui...

    stichtingb12tekort.nl/weten...

  • Goodmorning,

    My doctor didn't agree that my B12 was low even with several other symptoms. My daughter who was a nursing sister didn't agree and has bought and is injecting me once a month with B12 (my doctor doesn't know yet) and I feel so much better. I have terrible balance problems though and the specialist called it 'Functional neurological disorder' and said it won't get any better. could someone tell me what the neurological regime mention in this post is. My doctor suggested the Falls Clinic and I wondered if that was a similar thing.

    Viviennne.

  • Hello Getfitviv. Please can you tell me where your daughter is buying the B12 as I am finding it really difficult to get hold of, as most of the B12 is from abroad and as I have an anaphylactic reaction to wheat I need to be able to read the ingredients list. Any help from anyone would be appreciated.

  • Hi, I

    I'm afraid she has to get it from Germany so not a lot of help for you unless you have a german speaking friend! I wonder why it's impossible to buy here.

  • I know its very frustrating - will have a look at using Google Translate I think.

  • I get mine from Germany. On their site you can read the contents list. It's in German, but Google can help translate.

    Here's what it says about mine (Rotexmedia) - versandapo.de/article/detai...

    1 ml / 1 Amp. contains:

    Hydroxocobalamin acetat ( Products)1.0mg

    (SE) Hydroxocobalamin0.957mg

    (H) Natriumchlorid+

    (H) Natriumacetat+

    (H) Essigsäure 33%+

    (H) Wasser für Injektionszwecke

    That translates as:

    Hydroxocobalamin

    Sodium Chloride

    Sodium Acetate

    Acetic Acid

    Water for injections.

    All other hydroxocobalamin I've bought from Germany has similar ingredients - which are exactly the same as the stuff I get from the NHS.

  • Thank you both for your comments, which website/company do you use? I have had Rotemedica in the UK from my loading doses and they had to give me the leaflet so that I could check out the ingredients, which are Hydroxocobalamin, water and sodium chloride and a small amount of acetic acid/and or sodium hydroxide. Can I just ask for an opinion, my levels were 114 in Jan so I had the loading doses, the last one was 27th January, I ended up having more bloods yesterday and the level came out at 465, my Dr said that I am know in the "normal level" but I feel awful, all of my symptoms have come back but seem worse, I look like I have Parkinson's in one hand and poor memory loss, difficulty in getting my words out, tingling in the hands and feet and extreme tiredness I mean tired! My mum has PA and her bloods were checked one week before her next loading dose and it came out at 2000. My GP give me a vitamin D and told me to go - any advice please would be grateful received.

  • Like Steap i use Versand Apothek. See the link in my post for the exact stuff (although that may link to the 100 ampoules stuff).

    The symptoms you describe are neurological. The recommended treatment for people with neurological symptoms is to have loading doses every other day - until there is no further improvement in symptoms. Then maintenance doses every 8 weeks.

    It sounds as if your doctor read the first paragraph in the British National Forumlary (BNF) which is for those without such symptoms. Go back and ask for proper treatment.

    Recommendations are for doctors to treat symptoms, not blood levels. So blood tests are pointless.

    If you fail to get satisfaction then you may well have to go down the self-treatment route that many others have had to follow. There's plenty of good advice on here.

  • Thank you for your advice - I am going to fight the Drs one last time before I decide to turn to self-injection - it seems so hard to fight, especially when you feel like you are losing the plot also!

  • If you want to go fully armed download my summary document - frankhollis.com/temp/Summar... - which contains excerpts from a few expert documents, as well as links to those documents.

  • Amazon Germany have a site in English. That's where I get mine from. Never had any problems.

  • Hi getfitviv,

    'Functional neurological disorder'

    I had more than one neuro try to diagnose me with this. I wanted to say "If I have FND then it's been brought on by the stress of trying to get you to find out what's really wrong" but sadly didn't have the courage.

    Strange how when I finally resorted to self treatment, some of the so called functional neuro symptoms disappeared.

    UK b12 treatment for those with B12 deficiency with neuro symptoms

    evidence.nhs.uk/formulary/b...

  • Hi Sleepybunny,

    The specialist I saw said FND is a common condition lots of older poeple suffer from and to get a walking stick to help my balance! I think any nerve problem is probably due to having low B12 over a lot of years and no treatment offered. B12 has helped me with several problems I had but not my balance or tinnitus.

  • versandapo.de/article/detai...

    Scroll to the bottom. Hit the uk flag and it's all in english.

    Pay by PayPal. Delivered straight to your door in a few days with no tax due etc (on my delivery anyway).

    Only thing to point out though is is not really safe to use them unless you've had them first from the doctor under medical supervision because there's a slight chance of a reaction the first time you get anything like this.

    I got some but chose not to use them until I've had them from the doctor and know I'm ok.

  • I have a nurse friend who taught me the fine points of doing it and stayed with me the first couple of times.

  • There is a petition going to parliament as we speak seeking to get the injections changed to an over the counter preparation here in the uk.

    Keep your fingers crossed and if you've not signed it here it is.

    change.org/p/ian-hudson-ple...

  • Thank you both for your comments, which website/company do you use? I have had Rotemedica in the UK from my loading doses and they had to give me the leaflet so that I could check out the ingredients, which are Hydroxocobalamin, water and sodium chloride and a small amount of acetic acid/and or sodium hydroxide. Can I just ask for an opinion, my levels were 114 in Jan so I had the loading doses, the last one was 27th January, I ended up having more bloods yesterday and the level came out at 465, my Dr said that I am know in the "normal level" but I feel awful, all of my symptoms have come back but seem worse, I look like I have Parkinson's in one hand and poor memory loss, difficulty in getting my words out, tingling in the hands and feet and extreme tiredness I mean tired! My mum has PA and her bloods were checked one week before her next loading dose and it came out at 2000. My GP give me a vitamin D and told me to go - any advice please would be grateful received.

  • I have signed the petition and also shared with Facebook so lets hope the petition gets the momentum that it needs!

  • Hi MandyPandy,

    Have you considered contacting the PAS (Pernicious Anaemia society)?

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717

    PAS can sometimes intervene on behalf of members by writing letters. Think it is easier for them to help someone with a definite diagnosis of PA. I am sure they would at least be able to point you to useful B12 info.

    "My mum has PA "

    Is GP aware you have a relative with PA? Article below about family link in PA.

    pernicious-anaemia-society....

    Martyn Hooper, chair of PAS, has interesting blog on PAS website.

    martynhooper.com/

    B12 Deficiency Info blog

    b12deficiency.info/blog/

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