really desperate

PA diagnosed - given 5 loading doses and then told three months.  Symptoms returned, peripheral neuropathy was confirmed by a neurologist.  I had terrible pains in feet and legs.  I was reluctantly given one before that time.  But I wanted everything laid out and eventually found a haematologist who when seeing my blood results wrote to my gp  and said I needed more frequent injections of B12 because of the severe b12 deficiency and neurology symptoms.  I had a b12 injection 10 days ago and symptoms back with a vengeance  - dreadful in the night especially.  I have just contacted by gp because I am going to Canada on Thursday and the pain in awful.  she was furious with me for asking - told me I was pressurising her - no guidelines for more frequent injections. No to b12 (you would overdose) I said my information is that it is not possible to overdose on b12 - she went crazy when I tried to quote that with neurological symptoms there can be permanent damage if not treated.  I am in tears as I write this - heaven only knows what to do now. 

16 Replies

  • I'm afraid that you'll have to look at self-supplementation, in the short term at least. You may be able to get some sublingual lozenges and patches to arrive by Wednesday. If there's a Holland and Barrett store near you you could pop in and see if they have their 'Better Boost' spray.

  • Once you get back from Canada (have fun, I've always wanted to visit) you'll need to have a stern chat with your doctor - in fact I would really pressurise her. Take a friend as she'll be less likely to behave unprofessionally.

    Download my summary document - - and print out the last of the four documents linked to therein - - which explains just how nonsensical the idea of overdosing on a 1mg injection is. People with cyanide poisoning get given 10g (that's 10,000 times as much) straight into the veins!

  • If you are visiting friends and relatives then it may be worth getting them to check on whether injectible B12 is prescription only in Canada - I have a feeling it is available over the counter because I think people in N US tend to pop over the border for supplies.

    Really sorry to hear about the GP throwing a wobbly - no excuse for behaviour like that.  Hope you have managed to calm down yourself.

  • thank you both for your kind replies.  I have made an appointment with a private gp for a b12 injection on Wednesday - I cant go away in the pain I am in.  Besides at the moment I have to walk around in the night when the pain is so bad - and I shall be sharing with my daughter and granddaughter!

  • Hi,

    It won't help you for Thursday but perhaps when you come back if you are a PAS member, the PAS might be able to intervene on your behalf as you do not seem to be getting the UK treatment for B12 deficiency with neuro symptoms.

    pernicious-anaemia-society.... 01656 769 717

    See Management section.

  • I did quote this to her = and she brushed it aside and said she had never heard of it.  I will ring PAS in the morning thanks

  • Did you get my private message ?

  • no I did not get a private message.

  • Can't imagine what happened to it . I was so concerned about you I offered to send you a pack of 10 Hydroxocobalamin ampoules and the necessary needles etc for you to self-inject , I would need your address sent to me by private message,and you could get them before you leave for Canada.I have to leave by 1.30 to take a friend to the airport.

  • oh you are so kind...... I have now booked a private appointment with a gp tomorrow.  You cant know how much I appreciate your offer. so kind.  There...I am in tears again!!!

  • I hope that all goes well at the private doctors. I would always help wherever possible, because I have been in your shoes, and I know that desperate feeling.  If you wanted I could send stuff tomorrow in the hope that it would reach you for Thursday . Whatever, have a good break in Canada! Very best wishes

  • Jill39 it sounds as though you hit a nerve with your GP which does,not help you.I personally take sublingual methyl cobalamin which keeps me comfortable.I am under the impression one can,t over medicate on B12.Am not sure wether one can acquire B12 in Canada without a prescription but the on line pharmacies do a brisk trade to the U S  so it is a possibility. It is a mystery as to why the reluctance to prescribe it considering people used to request it to just feel better without any illness. An energizer as t,,were.Another thought you might consult a Canadien doctor  as a last resort.

  • I'm sure you can get jabs in Canada.

    I'm sorry but I'm already late this morning but please look up my profile and see my post "My Experiences" for more information.  The B12 Boost Spray helped me when I was in a similar situation last year.  

    Have a great trip!  

  • thank you all for your replies = seeing gp tomorrow but I am going to ring PAS right now to get some feedback I can quote to her  I am sure I have read that with neurological symptoms more frequent injections are necessary to prevent nerve damage.

  • just my luck! PAS office closed for three days!

  • You should be able to get injectable B12 and needles while you are in Canada. I'm in the US and I buy mine online from Canada, so I believe they are available over the counter. It will likely be cyanocobalamin. I use that without any problems but if you have Leber's disease (a hereditary eye disorder) then you should not use the cyano form.

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