B12 Update

Iv'e just been told that B12 103 ng/L (180 - 1000 ) is in treating range but not very low.

My CT Scan was negative, no lesions, so how do they account for my loss of balance, eyes open and shut - nothing further being done about my neuro. symptoms. Just said keep in touch. I presume i will get a further B12 injection when the 3 months is up.

I have an eye appointment at the hospital tomorrow perhaps they will sort out something.

Then I will phone PAS when I am less upset.

22 Replies

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  • Your B12 is low and needs treating properly. Your balance problem could well be a sign of neurological damage which can become serious

    The British National Formulary (BNF - your doctor will have a copy) says that people with neurological symptoms should be started with a sequence of loading injections three times a week until there is no further improvement in symptoms.

    Your doctor also needs to determine the cause of your deficiency. At the very minimum this should be a test for anti-IF (Intrinsic Factor) antibodies.

    We're your folate levels checked? You may need to supplement with folic acid tablets.

  • I told my gp this.... but he said it does NOT say that in the BNF.  oh dear

  • I would have asked him to show me, then I would have pointed out the paragraph following the one he read out.

    But I'm a stroppy git.

  • Have you been referred to a haematologist?

    My understanding of current UK treatment is that those with b12 deficiency with neurological symptoms should be referred to a haematologist.

    This info is in the BNF (Bristish National Formulary) Chapter 9 section 1.2

    See Management section in link below.

    patient.info/doctor/pernici...

    Google "BCSH Cobalamin and Folate Guidelines"

    Page 29 has info on treatment and diagnosis.

    Hopefully the PAS will be able to point you to useful info. Are you a member of the PAS? Sometimes they can intervene on behalf of members.

    "I have an eye appointment at the hospital tomorrow"

    Sometimes other medics besides haematologists and neuros can spot signs of b12 deficiency.

    An optician might spot signs of nerve damage in the eye.

    A dentist might spot bleeding gums, tongue ulcers, sore tongue.

    A podiatrist might spot signs of neurpathy eg numb feet, pins and needles in feet

    "so how do they account for my loss of balance"

    Have any of the GPs/neuros etc checked whether you have proprioception difficulties? Have you had a romberg test?

    Romberg test

    en.wikipedia.org/wiki/Romberg's_test

    Do you have any gut symptoms eg IBS type symptoms? Some people get diagnosed by gastroenterologists.

  • Thanks for your replies.

    “neurological symptoms should be started with a sequence of loading injections three times a week until there is no further improvement”

    We don’t do that in Gloucestershire – we do 5 loading injections and the next in 3mths if you are lucky, 6mths otherwise.

    Copy of the blood results –

    B12 103 ng/ L (180 - 1000) “Low” Prescribe parenteral B12 (1mg x 5 over 2 weeks)

    •If IF Abs positive. Continue 3 monthly parenteral B12 replacement.

    •If IF Abs negative. Withhold further parenteral B12. Repeat FBC – B12 after 6 months. If B12 fallen to low level resume 3 monthly parenteral B12 replacement. If B12 normal monitor FBC – B12 annually.

    Ferritin 69 ug/ L (10 - 300)

    Folate 4.3 ug/ L (>4.00)

    IF Antibody - negative.

    My GP said there was a high sugar result on it (which was redone and negative) but I can’t find it or anything else on my print off, so did I get a full copy of blood results or what.

    The coeliac test – negative was done later.

    I have not been referred to anyone. Can one ask to be referred?

    I have printed a copy of the BCSH C & F Guidelines will get it bound tomorrow and drop it in, but I think they will still say ‘ Not in Glos.’

    I joined PAS as soon as I heard about B12d.

    The Eye Consultant found cataracts and offered to do one in the next couple of months, but found nothing else.

    My legs are numb up to the knees, and do not feel heat. He did do balance tests, eyes open and shut. My balance, eyes open was bad and eyes shut nonexistent. I feel faint a lot of the time it comes over in waves.

    No gut symptoms apart from indigestion, I don’t take anything for it, just ‘grin and bear’.

    I don’t think I am going to get anything more from them. I will phone PAS tomorrow, and anyone know any B12 d sympathetic private doctors in Gloucestershire.

    .

  • HDA Patient Care Trust

    I may have mentioned it before to you but this charity may be able to help with free second opinions on treatment and diagnosis.

    hdapatientcaretrust.com/

    Helpline 020 7935 8366

    HDA Online Contact Form

    hdapatientcaretrust.com/con...

  • Dear beginner 1, I find that we only live 3 miles apart, I live in Cheltenham I had a terrible time in trying to get a diagnosis when I was feeling so unwell, giddy numb feet, exhausted , tunmmy problems. I had to go to the Nuffield to get my diagnosis  3 monthly I injections useless for me.---I still felt dreadful.  So now I self inject,and feel well again. numbness gone from feet, They now only burn and I can put up with that. 

    Tummy problems I solved myself,after finding out that P.A. Patients have no, or very little stomach acid. (Achlorhydria or Hypochlorhydria)  I treated my self with a water-based probiotic and sauerkraut from the health food shop. ( I now make my own with organic white cabbage etc---recipe online) 

    Lack of B12 can cause so many ptoblems---your eye sight can suffer  You just need much more B12. Self-injection is the answer for me. Maybe for you too?  My very best wishes to you .

  • Hi Wedgewood

    I think I need to go to the Nuffield too.

    I was going to ask for referral to a neurologist but I imagine there is a long wait. There is a month’s wait just to see the GP. It is another 3 weeks before I can see him. I can’t wait that long for either.

    I have had the 5 loading injections which finished 2 months ago and the next one not due for another month in spite of many neurological symptoms.

    Would you let me know who you saw at the Nuffield and what help did you get.

  • Thanks for your recommendation of Dr P at the Nuffield. 

    I have just been to see him. He is excellent. 

     He is going to confer with the Neurologist and get back to me.

  • I'm pleased to hear rhat' Things are looking up! 

  • Dr P has referred me to a Consultant Neurologist - next Monday.

    It is expensive but, hopefully, worth it. 

    I see my NHS GP on Tuesday and am not looking forward to telling him I have seen people privately and my 3 month B12 injection is due at the end of that week too. 

    All too much excitement !!!

  • Just heard I am not down for a 3 month injection - have to wait for 6 months. !!!!!

  • I didn't tell my GP about going to see Dr P privately until I took  her the letter he sent to me telling me that I had tested positive for IF antibodies..  It didn't bother her in the slightest. But you do know don't you that the anti IF test is only 50 %accurate. You can still have PA without the antibodies showing up. This happened to Martyn Hooper, the founder of the PAS. I hope that you have printed out all those leaflets to take to your appointment with the neurologist .    You need every bit of information you can lay your hands on. fbirder gave this link to them all

    frankhollis.com/temp/summary

    They are BCSH and NICE information documents,therefore all doctors shoul know about them.

    If you haven't got a printer I could print them out for you and send them if you give me your address privately.

    I am shocked to hear that you don't get another injection for 6 months. That is awful .Does this mean that you will have gone 6 months without one?.It's awful!

    I only hope that the neurologist is up to date with his information on B12 deficiency and PA. At least you don't have to keep looking at your watch!

    I can only wish you all the best for Tuesday. 

  • Hi Wedgewood

    Thanks for your reply, and your offer of printing - I do have a printer and have already printed out some of the information. 

    I was shocked and angry to hear I was not getting anything for 6 months, and then another blood test. I am sure they had told me 3 months. Perhaps it did not get written down?!!!  Perhaps I won't bother to tell them.

    If it is not sorted by the Neurologist I shall go back to DR P. (I found him very good) and organise some injections from him and then self inject. 

    Thank you again for your help.

  • I am keeping fingers and toes crossed for you!

  • i am so grateful you told me about private Dr P. 

    Instead of the 3 month injection I was expecting I had to have another blood test!!!!

    b12  343 (180 - 1000) 

    Folate  5 -  >4

    "So everything is normal" (said NHS GP - "retest in (I can't remember) either 3 or 6 months!!!.)"  

    As I expected this, I had a email ready for DR P to go to his other place, and arranged for 5 injections (2 a week), and then see how I feel.  Had my first one today. It was cheaper, by a lot there, and I have saved a lot by getting my cataract done on the NHS, I thought I would have to pay for that.

    DR P does not mind how many I have as "you can't overdose on B12."

    I phoned PAS spoke to Martyn, who was horrified by my lack of treatment and offered a letter to my NHS GP if necessary, but I think that is a hopeless endeavour.

    Thanks again for your advice, a life saver I think.

  • Hello beginner 1 

    It's certainly 18 months since I went to the Nuffield for a consultation with a G'P ,after drawing a blank at my surgery. I saw a very nice G,P  I cannot remember his surname except that it was Italian and began with P I think., It might have been something like Pierini But I'm not sure( he was English) .  What he discovered was that I had antibodies to the Intrinsic Factor, which means you have P.A.   He said that I could have the B12 injections there.  But I was worried about the cost. So I went back to my G.P. And had to show her the letter which said that I had P.A. Upon that she agreed to loading doses(5) and afterwards I was only allowed 1 every 3 months, in spite of the return of symptoms well before the 3 months was up.   This was when I decided to self-inject and have done so ever since. It is great to be in control o ones own health. . 

    What was so great about a private consultation was that I only had to wait a couple of days, and could talk to him for 3/4 hour .! It was well worth the cost of £160 (£90 consultation and £70 blood test.). But you do know don't you , that you can have P.A. Without the antibodies showing up?  I wish you all the very best. 

  • Thank you for your very prompt reply.

    I know the doctor you mean - very Italian name beginning with a P, I saw his name when I was looking at the Nuffield site.

    I had the antibody test which was negative, a 50/50 chance it was wrong, I feel faint, it comes in waves, a symptom of PA I saw. But I gave blood until about 11/12 years ago, and that was fine?

    I will go to the Nuffield, get his advice and then I guess will have to self inject. What a pain.

    Thanks again.

  • If you have read about Martyn Hooper(the man who started the P.A.Society) you will know that he also tested negative for the antibodies, But there has been a scientific paper---sorry I don't know the reference for it --that acknowledges this. If you ask on this site the other marvellous people will give you chapter and verse for that.,and you could go armed with that fact. It is a horrible time that you are going through at the moment,and you must believe that you are going to feel so much better when you get the B12 you need. I feel a quite different person now, but I still remember the desparation when I got no help from my doctor, and was in fact more or less told that I was a fantasist . GOOD LUCK!!!

  • Both the BCSH and NICE recommendations say that the anti-IF test is only 50% accurate - frankhollis.com/temp/Summar...

  • Thanks 1,000,000 for that fbirder! You have gone to so much trouble! I award you a medal! (Gold) 

  • Did you see that fbirder was kind enough to give the link to all that information?--Google this--- frankhollis.com/temp/Summary  Print it out if you can and take it to your appointment 

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