I've been suffering discomfort in my lower limbs for ages. especially my feet. I went to the doctors asking for diabetes test as my Dad was diabetic and had terrible nerve pains in his feet. (I totally forgot I'd had a course of B12 injections for several months about 20+ years ago. I didn't think it was something that would reoccur - very little knowledge about then) The locum doctor suspected B12 problems and sent me for blood tests with instructions to go back and see her. But it took 4 weeks to book in again by which time she'd left the practice. The doctor I saw said my B12 count was normal at 204. I wasn't happy as I'd read something saying that 500 is considered low in other countries. So I've had another test 5.6 weeks later and the count is now 267 as I've been trying daily to eat fish and other B12 fortified foods (I not eaten meat/poultry/eggs for 32 years. Started eating fish 1/2 times month few years ago). She's insistent it's not B12 and want me to go back in 3 months for more blood tests as she said my Red Blood Cells are large ?? And wants me to go for a scan to see why?? I'm just so sure it's B12 related as I'm so tired. the leg/feet pains, absentminded/forgetful/irritable/moody. Also my eyesight as significantly deteriorated rapidly in the past few months - could this be related?? Am I totally wrong or should I try to convince her to find out more about B12?? Sorry to waffle on but feel I'm getting worse - especially limbs & eyes - without anyone knowing why.
Advice needed please.: I've been... - Pernicious Anaemi...
Advice needed please.
You cannot get the full article because you have to be a member, but there is (I'll try and find it later) a new research paper in the BMJ (British Medical Journal) proving that not only do neurological symptoms come first but that the b12 serum test is a load of doo-doo (it's more scientific than that but you get my drift)
You need to print it off (just the abstract) take it in to your doctors, say a nurse friend pointed it out to you, and ask them to read it (they will be able to access the full document on line because they will be members of the BMJ) and to give you loading doses. And ask for a copy of the document to be put on record.
I don't know why you were given loading doses 20 years ago but if you didn't have a dietary deficiency then they should have been continued.
The diabetes foot problem could be related to the diabetes or the b12. Metformin also causes more problems with b12 absorbtion if you are on that.
Understand that b12 deficiency is much, much more than a blood condition - it degenerates your nerves and cells and the blood test means little or nothing.
Thank you Poppet. I will be printing that information off and taking it with me next time I go to see the doctor incase I need it. My diabetes test as come back clear thankfully so I'm not on metformin but that's useful to know incase it arises in the future. Thank you for taking the time out to help/advice me. It is very much appreciated x
Dear madwoman2014. Sorry to hear of your feeling so unwell. Sounds similar to what happened to me at the beginning of the year. I had B12 of 175,enlarged red blood cells, and was told togo home and eat lots of leafy green vegetables and to return in 6 months. I then went to private GP at a Nuffield hospital, who found that I had antibodies to the intrinsic factor(necessary for absorbing B12) cost--- GP £95, blood test £74. Went back to my own GP, with the result, and I was then declared Perniciously anaemic! You might have to go down that path, but your own GP should do all that. But that's only the beginning. I now self-inject, as a 3 monthly injection does not suffice to keep me free of symptoms.But everyone is different. The feet etc are another issue,as my feet remain very numb.and I am now arranging to have methycobalamin injections privately, in the hope that will improve them . Hope this bit of info. helps All the very best to you.
Thank you Wedgewood. It appears I've got muddled up with my blood cells as they are actually small and not large?! I am having a scan to rule out anything other than dietary problems then further blood tests in 3 months time. I will be going back to the doctors if I start to feel worse before then. So I am lucky. I do hope that you managed to banish the pains in your feet very soon. You're braver than me as I would never be able to self inject 
Thank you for your advice and very best wishes x
Hi,
Your symptoms do seem very much B12 def related so if possible you could ask your GP for the Active B12 test (new test that is a better indicator of the B12 that is actually available for your body). Read up as much as you can, print out for your GP the new British Society for Haematology Guidelines for the diagnosis and treatment of Cobalamin and Folate disorders, see:
bcshguidelines.com/document...
Info on active B12:
active-b12.com/What-Is-Acti...
Info on active B12 test at St Thomas:
viapath.co.uk/our-tests/act...
I hope this helps, its a lot to read, but it will help you further if you get to understand what B12 def can do,
Kind regards,
Marre.
Thank you Marre. I have started to read some of the articles and will definately be printing some of the information off and taking it with me next time I go to see the doctor incase I need it. I will be asking about the active B12 test as I don't think that's what I had? Thank you very much for taking the time to help/advice me in such a detailed way. It is very much appreciated x
As Marre says - symptoms do sound very much like B12 Deficiency, and your reading is on the low side of the normal range and would certainly be considered low in some countries (Japan is one, I believe).
Active B12 can be a better indicator but the sad truth is that there isn't a test that will definitively show that you are suffering from a B12 deficiency - not least because the problem can occur at different points in the metabolisation processes. The other thing you can suggest is looking at some nasties that build up if your body isn't using B12 efficiently - MMA is the common one (though I believe urine test is a better guide than serum) and homocysteine (but don't know if that's available in the UK).
PA is one cause but there are a lot of others - including changes in acid levels in your stomach. Are you taking antiacids at all?
You might find 'Could it Be B12?' by Sally Pacholok a good read in terms of understanding how you can get B12 deficient and how B12 deficiency affects you. 'Pernicious Anaemia - The forgotten disease' by Martyn Hopper is another good book for explaining things.
As Wedgewood says - lots of people don't get on with the standard regime.
On the whole it is best to try and confirm that you are B12 deficient before you start treating but it can be very difficult to get anywhere with some GPs - the next hurdle will be getting the treatment that actually works for you.
Thank you Gambit. It seems I've got confused and my red cells are small and not large. Which the doctor says indicates it's not B12? I am still going to purchase the 'Could it be B12 book you've advised as it sound to be very informative. Although the doctor was reassuring I still want as much information as possible as I still believe my count of 267 is on the lower side. And the aches/pains etc are still here. (Believe me the amounts of fish & B12 fortified foods I've been eating are not sustainable on a permanent basis and that's what I believe as taken my count up from 204.) So thank you again for your advice - it is much appreciated x
Madwoman,
It sounds like your doctor is using the fact that your red blood cells are not enlarged to rule out B12 deficiency, but this is incorrect and she
doesn't appear to be current on this issue.
You've had good advice on this already.
There are anemias in which the red blood cells are small, termed microcytic anemia, some involving decreased iron and others which tend to run in families.
Best,
Leilani
Thank you Leilani x
Yes, likely the last of meat alone, since that's the ONLY way to get b12 from food had triggered the pain in legs. The pain is extremely bad, knife like.
The MMA urine test most doctors are aware of. Might be easier to get doctor to order that. So sorry you're feeling poorly.
Thank you Pauline x
Hi,
so sorry you're suffering so, I agree with all of the above and I myself had the same problems you are suffering and was diagnosed with M.E last year but I decided to listen to my instincts and took my courage in my hands and asked for copies of all my bloods and turned detective. I discovered that my Vit D was low along with my B12 serum which has since dropped further and now flagging up enlarged red cells. I was so nervous to go back to the Drs and point it out because they had not acted on it despite all of my symptoms and I didn't want them to think I was telling them their job! However although my Dr didn't agree to a loading dose she did agree to monthly 3 monthly injections which I wasn't happy with so she agreed to monthly. I know I've been lucky that she has agreed and I can tell you I've had 3 now and am taking sublingual's and the difference its made is like a miracle. I still get symptoms the week before its due so I still have some way to go with the Dr, I also would like the test to see if I have pernicious anaemia, IF antibodies, so there are some discussions to be had. Just for your info as well, I remember reading on the NICE guidelines that if a patient is symptomatic with neuropathy and B12 is in the grey area then the Dr can/should? prescribe injections. I can't remember all the details but I was ready to quote it to my GP as I was and still am determined to get my life back!
Good Luck to you
Thank you Jsteg. It seems I'd be rubbish at doing what you've done as I've already made the mistake of thinking the doctor said large red cells - when she'd told me today she said small red cells?! So I will go along with what she's suggesting for now. But I am gathering all the B12 information together just incase it is needed later. I do hope that you continue to improve and rapidly. Congratulations on having the strength to stand up for yourself. Best wishes for the future and thank you for your help/advice x
You are very welcome I am absolutely not someone who does not make mistakes lol especially with the amount of reading that all gets jumbled up! It was so heartening to hear that your Dr took the time to ring you but as you've said you are gathering the information for yourself and that will gain you strength. I've been trying to sort it all out for a while now and am still only just beginning to get a few things straight. Just for your info my count was around 340 and dropped to 220 and I have been ill for a long time but only ever had b12 checked those 2 times. As I improve so much after my injections I've come to the conclusion that being in the grey area can and does cause me to become very symptomatic. I'm seeing my Dr on Tues to discuss further.
I wish you good luck with your next Drs visit and wish you happy reading. xx
Thank you Poppet, Wedgewood, Marre, Gambit, Pauline and Jsteg. My doctor actually phoned me early this afternoon saying she had discussed my symptoms with another doctor in the practice. Apparently I'd misunderstood what she'd said about my blood cells as she said they are actually small and not large and that is why she doesn't think it's my B12. She said the scan is to see if there are any causes for the small cells other than dietary related. And the blood tests in 3 months time are to check on all the counts especially to monitor the B12. She's prescribing some strong iron tablets for me to take for the next 3 months. So I feel abit more reassured especially as she's the one who phoned me because I think she realised I needed reassurance?! The pains are still there but hopefully I'll find out why soon and be able to sort them out. I am still going to read up all I can and print articles off to take with me next time I go though. So THANK YOU to each and everyone of you for your kind advice and best wishes xxx
Gambit, I noticed you mentioned the homocysteine test and was it available. I had mine done by sending their kit test to York Laboratories. It came back normal but apparently it is related to folate deficiency which I am not deficient in (I'm a vegan, it is very high, which can mask a B12 deficiency)
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