Hello everyone,
My vitamin B12 level was 41 and I have just finished my loading doses. Go says I have to have them every 2 months now. Does this mean I have pernicious anaemia?? I am confused. Also, do the loading shots ever fail as I am most definitely not feeling any different at the moment. Xx
I am new so hope this is the right place to ask!
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Hi Glammy35 If you are in the U.K. you are certainly being treated in accordance with the N.I.C.E guidelines for P.A. As to whether you have P.A. or not will be determined by your doctor testing your Intrinsic Factor.
Here are the guidelines. Click on the link then on "Scenario Management" and (slowly) read down.
google.co.uk/url?sa=t&rct=j...
Do you know what your Folate (a.k.a B9 of folic acid) level is?
Folate and B12 help your iron to make red blood cells and need to be kept in balance as a deficiency in one or other interrupts the process.
You say that you are "most definitely not feeling any different at the moment". What symptoms do you have and how long have you been B12 deficient?
I am not a medically trained person but have had P.A. for over 45 years
I am sorry but I don't know what my folate is...I think I will ask for a copy of my blood results so I can find out. The gp just left a message on my phone initially saying my B 12 was low and then when I went back last week he told me it was very low at the level of 41 but didn't tell me much else other than I need them every 2 months and I have to have a repeat blood test tomorrow to see what they are now xx
Folate is also known as folic acid and we normally source it by eating leafy green vegetables, sprouts, broccoli, asparagus, beans peas etc whereas B12 comes from eating animal products, meat, fish, poultry, eggs and dairy produce so if your diet is lacking in the above or you have tummy troubles causing absorption problems you are at risk of becoming deficient.
Folic acid is also to be found in many breakfast cereals - look at the side panels on the packaging.
Please ask your doctor to include a test for your folate
Hi,
If you're in UK, I'd also suggest reading "BSH Cobalamin and Folate Guidelines", a UK document outlining diagnosis and treatment of B12 deficiency
b-s-h.org.uk/guidelines/gui...
Flowchart below from BSH Cobalamin and Folate Guidelines. Outlines when PA (pernicious Anaemia ) can be diagnosed.
stichtingb12tekort.nl/weten...
B12 book
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
PAS (Pernicious Anaemia Society)
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769 717 answerphone so messages can be left
I am not medically trained , just someone who has tried to find out what's wrong with me.
Hi Glammy35. Hello and welcome...and yes, you've come to the right place for help 😀.
My goodness, your serum B12 was very very low and I'm not surprised that you've been feeling very ill.
Your B12 deficency is being under treated: people with neurological symtpoms (I'd be surprised if,you did. It have these with a B12 that low) need much more intensive B12 injection regime - and many GP' do not know this.
There has been a missed step in your treatment: the eight weekly regime of B12 injections is the maintenance dose for those with neurological symtpoms - the missed step in treatment is as follows:
After the initial six loading doses of B12 injections, you should have received B12 injections every other day until there is no further improvement, sometimes for many months and up to 2 years: in terms of improvement you don't seem to have had a great deal yet. This is because repair to nerve damage takes longer to effect...and more frequent B12 injections 😀.
I recently wrote a reply about this so I'm going to include a link to that reply. It contains details and information that will help you to understand more about knishes anaemia and B12 deficiency and then particular it gives details about the intensive regime of treatment that you should be receiving.
Here's the link:
healthunlocked.com/pasoc/po...
(Note: The reply above was written for a forum member who was put on three monthly injections following the loading doses. It also applies to your eight weekly regime. And sorry to do it like this - do it like this - don't have a great deal of time this morning but wanted to get something off to you 🙃).
About a possible PA diagnosis: there are many causes of B12 deficency, PA being one of these causes. Other causes include: GI surgery, gastric band, coeliac disease, IBS, certain medications...and many more. The crucial thing here is that the treatment for B12 deficency (whether caused by PA or not) is the same: B12 injections.
Your GP should want to identify the cause of your B12 deficiency so should consider all possibilities, including PA (which is more likely (but not certain) if you or any other members of your family have any other autoimmune conditions conditions).
Ask your GP,to test anti-IF antibodies. This is the test for PA. However, the test is. It very reliable: it returns false negatives on 40 - 60% of those tested - so you can test negative and still have PA - many GP's do not know this, so treatment should never be withdrawn on the basis of having a negative test. And B12 deficency also has other causes (again, some Gp's do not know this): your obvious B12 deficiency still needs treating.
The link above contains another link to a diagnostic flow chart that shows the process your GP should go through to diagnose the cause of your deficiency (though it has to be said that it's not always always possible to identify a cause).
I urge you to go back to your GP (with some printed information and evidence from the link above) as ask to be put on the every other day B12 injection regime.
Please do,post again if you have any problems getting this treatment and we can advise further.
Take care and let us know how you get on 👍
Thank you so much. I will print this off and take it with me. My gp didn't really explain anything to me. Just called me after my bloods and said, your b12 is low, I have arranged 6 injections and that was it!! Then when I went back for a follow up appt, he just said...u need them every 2 months and I want you to have another blood test to see if the b12 level has increased. I still have dizziness, extreme fatigue, weakness, brain fog, zero concentration and yesterday my leg was tingling/numbness ( although my lip tingling/numbness has stopped since the loading jabs ) .... I am feeling very fed up!! Thank you so much for your reply xx
*** Edit *** I have my blood test tomorrow and was diagnosed with low b12 2 weeks ago ***
Hi Glammy35.
Yes, the fact that you are still symptomatic, especially with neurological symptoms, is a sure indicator that you need the more frequent injection regime.
A word about the serum B12 re-test: all the guidelines state that testing is no,longer necessary once B12 injections have commenced - unless looking for LOW levels of B12.
Following injections B12 serum should be high - simply because you have been I jetted with lots of lovely health giving B12 (levels following injections can typically be at 1000, or even higher. Mine run at 2000 and we have seen them here as high as 5000).
Some GP's mistakenly think that if B12 levels are within the reference range after the loading doses, then B12 injections are no longer required. Wrong.
B12 levels are irrelevant following injections and there is no correlation between B12 levels and symptom relief/neurological repair. The thing that you GP should focus on is symptom relief - and you don't have that yet. The golden rule here is treat the symptoms, not the blood test results (unless they are low).
So...your levels should be high and your GP should not use this as a reason to stop your treatment. Sadly, many do 😣.
Again - about the neurological symtpoms - intensive treatment is required to prevent potentially irreversible neurorological damage. I say this not to frighten you - it's a simple fact that appropriately intensive treatment in the initial stages makes for a better outcome.
There is information about the problems and pit falls associated with using B12 serum levels as a marker of B12 deficiency and as an assessment of the efficacy of treatment in the links I left - again, good to,print and take along to your GP appointment (highlight the most relevant 'bits' 'cause they won't have time to read the lot 😣.
Good luck with your GP. Be interested to hear how it goes. 👍
Wow...thanks for that information. I am so glad I joined this group. You have been really helpful and I feel a bit more knowledgeable now so thank you again for all this brilliant info. 😄
Hello Glammy 35
I was just reading your post and just wanted to say almost a year ago this month I had my very first B12 loading doses, because I was below 80 I had the 6 but then had to have another 6 as I felt no different, but instead of having every other day till further improvement I went on to 2 monthly, but I still have numbness in my first 2 toes and my first 2 fingers all the time they get worse nearer to my top up, my level is now over 2000 but I cannot say that I really feel any better, I get brain fog and feel like I have a thought in my head one second and then it disappears, been to see the neurologist but feel I am no further forward than I was a year ago 
best wishes to you and hope you see some improvement quicker than me x
Hi Lotusblossom. Oh dear, I'm so sorry that you're still struggling with the symtpoms of B12 deficiency.
It's never to late to start the every other day regime of injections.
Suggest you access the link I left for Glammy35 and go back to your GP with evidence from those links and request every other day injections for your continued neurological symptoms.
There's no way of knowing if you will improve further (some do and some don't) but we do get reports here of people who improve - and continue to improve - following long-term intensive B12 treatment.
One poster recently reported that after a year of every other day injections (and several years of symtpoms), her neurological symptoms suddenly disappeared and she felt like a normally functioning human being again 😀.
A serum B12 level of 2000 does not mean that you are being effectively treated - it simply show that you have been injexted with vitamin B12.
Good luck 👍
Hi Foggyme,
Thank you so much for your help I will make an appointment and follow this up, I can only hope for some improvement
Many thanks 
No problem and good luck with your GP.
Worth noting: B12 is not toxic, dangerous or addictive (some of the nonsense ideas GP's sometimes have). And you cannot overdose on it. You have nothing to lose (except your symptoms) and a lot to gain by having every other day injections.
Post again if you have any problems persuading your GP to prescribe more frequent injections.
👍
thank you I will
Hi,
Some more B12 info
1) Pinned posts on this forum. I found it helpful to read fbirder 's summary of mainly UK B12 documents. Link to summary in third pinned post. Extracts that might be helpful if faced with a GP who has not done their homework on B12 deficiency.
2) BMJ B12 article
3) B12 Deficiency Info website
4) b12d.org
5) B12 Awareness (USA website)
6) Book "Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ, Stuart (USA authors)
Very comprehensive book about B12 deficiency with lots of case studies.
Martyn Hooper has written two other books about PA and B12 deficiency besides "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency". I gave a copy of "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" to my GPs.
I also found his book "Living with Pernicious Anaemia and Vitamin B12 Deficiency" useful as I could recognise aspects of my experience in some of the case studies.
7) B12 blog
Stories about PA and B12 issues
B12 deficiency with neuro symptoms
There seem to be many on this forum who struggle to get correct level of treatment when neurological symptoms are present, myself included.
If you're in UK, the info GPs need is in BNF (British National formulary) Chapter 9 Section 1.2
It's a slim book that outlines recommended treatment for various medical conditions and I'm willing to bet most UK GPs have a copy on their desk or bookshelf. A kind GP may let you look at their copy. It's possible to get your own copy from a good bookshop or popular internet retailer.
The BNF mentions treatment for megablastic/macrocytic anaemia but some GPs may be unaware that it is possible to have PA and other causes of B12 deficiency without having anaemia.
The BSH Cobalamin and Folate Guidelines has info about UK B12 treatment , a quarter through document. It seems to be less specific than BNF eg mentions that not all with B12 deficiency have anaemia. I gave a copy of BSH Cobalamin guidelines to my GPs.
Does your GP know all your neurological symptoms?
I gave my GPs a copy of PAS Symptoms Checklist with all my symptoms ticked plus I added any neuro symptoms not on list.
pernicious-anaemia-society.... see Symptoms Checklist
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
Unhappy with treatment?
Link about writing letters to GPs about B12 Deficiency. Point 1 is about undertreatment of b12 deficiency with neurological symptoms.
b12deficiency.info/b12-writ...
CAB
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and treatment.
PAS (Pernicious Anaemia society) can sometimes intervene on behalf of its members not receiving correct treatment. Think it is easier for them to do this with people who have a confirmed diagnosis of PA.
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