Pernicious Anaemia Society
15,126 members10,690 posts

Is this level of B12 low enough for treatment?

Hi, I was diagnosed with a folate deficiency 2 months ago so have been taking tablets for that. When I had the blood test that diagnosed it, I had a B12 level of 167.

I have recently for the past few months been having pins and needles a lot, slight numbness in my toes, tiredness, brain fog like being unable to concentrate at work, forgetting things etc.

I had another blood test at my request, my B12 level was 221 which the doctor said is normal. But I had a Vitamin D deficiency which they said is probably the causeof my symptoms.

To me though, the symptoms of a vit D deficiency don't seem the same? Do they usually include pins and needles and neuroligical problems? I thought it was just muscle weakness and bone pain mostly.

Is it worth me asking the GP to consider a trial of B12 medication? Or would you say its high enough that it's likely not the cause of my symptoms? The range on the test was 145-910 btw.

Thanks in advance :)

17 Replies
oldestnewest

Hi laceymolloy97 the problem with ranges is they are based on "average normal" people - and we ain't all "Normal".

The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

google.co.uk/url?sa=t&rct=j...

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

.

1 like
Reply

Thank you for your advice. I am getting a call-back today from a GP today, after being told yesterday by a different GP that they are not concerned about my B12 and it is the vitamin D causing me problems. I spoke to a GP where I work (I work at a practice) who said that some GP's will treat based on symptoms rather than levels, as some people have symptoms with low-normal results.

I hope the doctor takes me seriously.

Thanks

2 likes
Reply

Could I also ask, what test did you have to find out you had PA?

Reply

The usual test for P.A. is the Intrinsic Factor Antibody Test . This test is very unreliable ( about 50%) If you test positive , you do have PA. If you test negative you can still have PA !

1 like
Reply

Sorry to come back so late.

My test for P.A. was called the "Schilling" test which involved having a massive dose of B12 injected and then drinking a glass of radioactive B12 at the local hospital. I then have to "save" every drop of urine in a container and return it to the hospital 24-48 hours later and the amount of B12 secreted was measured. The first test in 1968 was "inconclusive" but the second in 1972 was positive for P.A.

The Schilling test was, I think, deemed to be more reliable (even though it got it wrong for me the first time) than the modern one but it is no longer used due to the difficulties in obtaining radioactive isotopes these days.

When my doctor gave me the "good news" that at last she had found what was wrong with me she also told me the "bad news" that I was going to die within two years unless I either ate raw liver three times a day or had B12 injections for the rest of my life.

I chose to have the injections and I'm still "clivealive" after 46 years and over 75 :)

As wedgewood says below, the Intrinsic Factor Antibody Test (IFA) is very unreliable but of course the doctors will look at a negative result positively and refuse to believe you have P.A. even if you do.

Reply

So if I can convince them to do the IF test, is there any other tests they can do at the same time that are more accurate? Thank you

Reply

Please remember I'm not medically trained

You could always ask for an MMA test but I'm not sure of its availability.

Methylmalonic acid is a chemical used up in one of the cellular reactions mediated by B12.

If there's not enough B12 in the cell then MMA levels will rise.

If they're not high then it means your cellular levels of B12 are OK.

High levels of plasma MMA (>0.75umol/L0 almost invariably indicate cobamalin deficiency.

Reply

I spoke to a GP who said "your B12 levels are normal, its not the B12 causing your symptoms" and said they are well into the normal range, not low-normal.

I give up. I guess I'll just have to deal with it.

Reply

If you don't want to give up then you need to start quoting guidelines at the GP

BCSH guidelines which GP can access through the BNF

a) serum B12 is not a very sensitive test - it will miss 25% of people who are B12 deficient if taken as a single measure

b) you have a folate deficiency (which presumably isn't dietary), which implies you have an abosorption problem. B12 deficiency is something that should be formally ruled out in this case.

c) 25% of people who are B12 deficient initially present without any signs of macrocytosis.

d) B12 deficiency with neurological symptoms should be treated promptly to remove the risk of permanent nerve damage.

additionally - were the ranges for the two test (and units) the same? The difference is actually within the noise level for B12 if they are the same units - so not evidence that levels have improved.

Unravelling symptoms in the presence of several conditions/deficiencies going on can be very difficult.

Reply

Do you think it's worth me writing all this down and giving it to my GP in a letter? I have already printed the guideine flowchart from the BSC.

The ranges were the same for both my tests, I had one in February which was 167, and one this week which was 221. It doesn't help my case that it's increased.

In your opinion should I keep pressing or try and treat it myself? I can get over the counter B12 vitamins.

Reply

Blood serum levels do not indicate how much of the B12 is active B12 , and is available for use . I supplemented with patches , sprays and sub -linguals and had an off the scale reading , but still had awful symptoms . I did come up IF positive. so I had PA. , and was eligible for treatment .

Reply

think it is best to try and work with GPs if you can - and yes may be worth putting the above in a letter to them. However, at the end of the day it is your health that matters.

Reply

Thank you I will try.

I'm just worried I'll make a fool of myself going in there with a letter then if they do agree to test I may turn out to be wrong anyway haha! The last GP I spoke to was incredibly patronising, and also told me the ONLY symptom of B12 deficiency is mouth ulcers.

Reply

it is unfortunate, frustrating and potentially life-threatening that so many medics are so ignorant about B12.

Would suggest that you a) ask your GP to look through the BCSH guidelines which they can access on the BNF but can also be accessed here

onlinelibrary.wiley.com/doi...

and also ask that they take a look at the area on the PAS website that is specifically aimed at helping GPs to improve the standards of diagnosis and treatment of PA

pernicious-anaemia-society....

Reply

Thank you I will put this in a letter and hope for you best. I'll just ask them if they can do the tests just to humour me haha then if they come back negative, fine I'll leave it.

Thanks

Reply

Hi if the symptoms are still there chances are your intake of b12 may need to be increased , I go on my symptoms , as u know ur own body , it would be worth asking the doc , I am taking folic acid , iron & vit c as well as b12 injections , I am only just starting to feel better , I have the same symptoms as you as above , the doc cant understand the aches and pains and I was referred to reumatoligy last year , which was a waste of time , I keep a diary of when I'm starting to feel all the symptoms re appear and it seems to be every 3 weeks the now so I've been getting the b12 injections 3 weekly but I've had to push this with doc as the guidelines say 3 monthly . I have argued my symptoms and so far they are allowing me to get them (thank god) .

I have 2 kids and work to see too and I was really starting to struggle , but the vit combination is helping (u need b12,iron and folic all to be in balance )ands with reg b12 I feel like the old me again .

Good luck

🙏🏽

Reply

I am about to go to London, along with my daughter, to have a range of private tests at Guy's and St Thomas' Hospitals at their Viapath Lab. There are various levels of tests you can buy and I am having the full 7 for £135, consisting of B12, Active B12, MMA, Homocysteine, Ferritin, Vitamin D and Folate. I am currently on monthly injections but have symptoms still and my daughter very unwell. Depends if people want to pay out or are able. Look at nutris.viapath.co.uk

1 like
Reply

You may also like...