B12 103  (180 - 1000)  (other test negative). and neurological symptoms numb legs, no balance etc.  5 loading injections, 3 months with nothing.

Another blood test instead of the injection I expected.  

B12  343  (180 - 1000)  You are normal now we will check again. (I was so angry I can't remember whether he said 3 or 6 mths.) He did mention perhaps referring me to a neurologist. (As I have already seen one I shall have to tell him.)

I phoned PAS and spoke to Martyn Hooper who was furious and offered to write  a 

letter to my GP. but I can't face any more arguments, it is a waste of what little energy I have.

I emailed the private GP I had seen (who had referred me to the Neuro. Consultant) and arranged for 5 B12 injections, two a week, because of the 13 week gap with nothing. and we will reassess it then.  I had my first one on Friday.  

This really should not be necessary.  Have they (the NHS GP's) not read the latest NHS Guidelines, I have not even been offered that.!!!!!


24 Replies

  • Sorry that you are being forced to go private.  There can be some local variations in how much attention GPs give to national guidelines as there can be regional guidelines.  Doesn't fully excuse it as GPs have a professional duty to exercise their clinical judgement - so bit of a sop.

    I'd like to suggest that you think again in terms of getting Martyn Hooper to write to your GP as quite possible that other patients have and will continue to be mistreated in the same way and may not have recourse to finding other solutions - more worryingly may not even be aware that they are not being treated properly.  Don't know if thinking of it in terms of others makes it easier - think it does for some.

  • I don't think I will get Martyn to write, I don't think it will have any effect. 

    Firstly I am pretty old, can give clivealive a few years (I think females and the old often get treated as if they are idiots) They do know that this is not the NHS treatment as I argued about it when my 5 loading came up.

    I do not want to get in my GP's bad books and I like them. I need them for my (what was mild COPD) but in the last few months has got worse, I am very breathless now  -  B12 D ?  My treatment for that is fine, regular check ups and quick access for chest infections.

  • Understand

  • Thanks, and thank you for all your very helpful advice.

  • I know I'm just a "youngster" beginner1 but just think of the good you can do by getting "in (your) GP's bad books" by really upsetting them so much that they take notice of what you are saying, thereby helping the next B12d or P.A. patient that comes their way requiring more frequent injections.

    Be a warrior with Martyn Hooper and upwards of 7000 of us P.A.S members at your side.

    Seriously though I wish you well for the future whatever route you take to get your deserved treatment.

  • I will see how it goes at my appointment.

    I have printed and bound a copy of the BCSH 'Guidelines for the diagnosis and treatment of Cobalamin and Folate disorders', which I may hand to him if he makes me mad, otherwise I shall send it to the Gloucestershire Hospitals doctor who formulates the county Guidelines, and if he makes me very mad I just may turn Martyn Hooper onto him!!!

  • Love it beginner1  :D

  • I had a very amiable appointment with my NHS GP. Showed him the private neurologists report. Told him about the injection I had had and the ones I planned to have. We discussed how the NHS Guidelines differed from the outdated Glos. ones and I showed him the copy of the BSCH report, which he asked to borrow, I said he could keep it. So he is going to get back to me. I now need to print another copy for the Glos. Guidelines man. 

    As I have said before my GP's are very nice. But whether anything comes of this I shall have to see.

    I have felt so much better this week after one injection and 10 days of spray and balance much better too, no more staggering like a drunk. 

  • Send it to the doctor and to the Gloucestershire Hospitals doctor too - AND get Martin on to the case as well.  Go in all guns blazing - it's your life, your health and you prerogative to demand the service you have paid for!  Good luck and God Bless.

  • Reading about your breathlessness made me think of LOW iron - do you know your levels of Ferritin - Folate - Iron and VitD ?  All need to be optimal rather than bumping along the bottom.

    Also it may be a good idea to top up in between injections with either patches - oral sprays or soluble  lozenges - many of us do :-)

    Hope you soon receive the treatment you deserve ....

  • Thanks for you help.

    Ferritin was 69 ug - (10 - 300) at the first blood test, which looked (in my ignorance) OK. I haven't seen what it was in the latest one.

    Folate 4.3  - (> 4.00 ) which was scraping it but I am eating more spinach, asparagus and lentils (love dhal sag) 

    It is now 5.0  - (>4.00 ) not exactly good.

    I started taking a spray, Boost, an hour after I had the last blood test.

  • Your Ferritin may need a small tweak as I have read that something around 80/90 is good.  ( Often mentioned on the Thyroid UK forum here on HU )

    I love the thought of gaining all my nutrients from food but I believe as we age it is more difficult as our stomach acid diminishes and we may need a little help with supplements.

  • I was quite low on B12 but GP said I was in the normal range. I became more and more breathless along with other symptoms. I told my GP how I felt, he eventually sent my symptoms to a haematologist. Fortunately I was having other respiratory tests, and a registrar did a blood test as I was feeling so awful and discovered I was severely iron deficient, ended up with 2 blood transfusions and iron tablets. What was your haemoglobin count?.

    Have now got rid of most symptoms, by taking iron tablet Still have numb feet and B12 is now 118, but I am still 'in the normal range'!!

    Things can interact with each other and symptoms can be similar. Could your breathlessness be related to other things

  • I was only tested for B12, Ferritin and Folate, at least those were all that were on the sheet I was given but one gets cynical after a while. I will update soon.

  • Hi,

    Are you a PAS member now? You could contact the Gloucestershire local group. There may well be others in the area who can relate to what you have been through.

    If you can't face upsetting GP perhaps you could speak to your local MP.

    Private Injections can be very expensive. Some people on this forum self inject. I seem to remember from your previous posts that you have some neurological symptoms.

    Have you ever considered having a B12 infusion? Perhaps your private GP could tell you more. I believe the PAS can pass on info...see link below.


  • Hi

    Yes I joined PAS and am a member of the Glos. group, we exchange information and tales of woe.

    Bless the private GP, the injections are much less than I thought they would be and are doable.

    I doubt my 2/3 year old neuro. symptoms, are going away  (numb lower legs and can't feel hot water,)  - confirmed by the private Neurologist I saw,  I can manage those.

    But surely there is hope for the new ones (since January) loss of balance, feeling faint, feeling ill etc. with the right treatment.

    I have never heard of a B12 infusion ? 

    Thanks for all your help since January - I was completely ignorant of B12 D when I came on this site then,

  • Hi,

    The link in my reply above is the PAS statement on B12 infusions.

    I hope the B12 injections help you. I do sometimes wonder with older forum members whether there is some age prejudice from medics.

  • Thanks. Sorry I missed the link first time round. It is an idea. 

  • i am the same as you , i have had 6 loading injections and then no more till july i have a blood test next week to see if b12 levels have come up i feel wrecked at the moment, they dont realy seem to want to discuss anything at drs, i live by myself and work full time this is all so hard

  • Hi Rosanne

    I hope you have better luck than I did. July is so far away. An hour after my blood test I bought a Boost spray and although it did not help the neuro. symptoms much, if at all, it did make me feel more cheerful, 

    There is a lot of help on this site. Ask anything that worries you and someone will answer.  I was new to it in January but had so much help that I feel I know enough now to make some sensible decisions.

    Good luck.

  • ME... "They are only guidlines! NOT THE RULES!"

    Doc... They are to be followed and we only injext at 12week intervals.

    Me... This is ridiculous. 

    Ive seen all.4 practitioners in my practice and they ALL say the same... 

    I do my own weekly now and have one at nurse. 

    Grrr them

  • Doesn't it make you want to scream. Which county are you in.  I think Gloucestershire Guidelines updated 2005 (mine) are probably among the worst. 

    5 loading injections: if IFAB negative another blood test after 12 weeks:  if  B12  is now above 180  no injections but another blood test in 6 months. 

    Neurological symptoms count for nothing. 

    Can anyone beat that.

    Perhaps we should do a list of all the counties that do less than even the BCSH Guidelines.


  • The person who runs the B12 Deficiency Info website may be interested beginner1.

    She has stories on her blog about one UK NHS area with a really low reference range.

  • Thanks for the link, I will send them the Glos. algorithm.

    I tried, unsuccessfully, to put it on here to see if anyone could beat it.

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