Pernicious Anaemia Society
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Below range b12 - advice needed

Hello all,

I'm posting on behalf of my brother who had some private blood tests done to look at his thyroid function and all came back normal apart from his very low B12 level and low folate as follows:

Vitamins

VITAMIN B12 - *120 (140-724)

FOLATE (SERUM) - 3.92 (2.91-50)

He isn't a vegan and eats a varied diet so I can't see why his level of B12 is so low. His ferritin level was good which makes me think it's not due to something like an inflamed gut causing it as iron would be hard to absorb too in that case.

I'm wondering whether he might have PA and would like some advice on what to get him to do next. I'm thinking he should go to his GP so they can repeat the blood test along with a full blood count to look for anaemia. Would NHS doctors treat someone with below range B12 like this? Would it be shots or oral supplements?

What other tests would they do for PA?

I told him to look at the symptoms of PA/low B12 to see if he had any and he replied that he'd had pins and needles in his arms for a little while. Is this neurological involvement? I know if he needs B12 shots that he should get more if there is neurological involvement.

Any advice that I could pass on to him would be much appreciated. Thank you!

10 Replies
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Hi foxrabbit

Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:

Weakness and fatigue

Light-headedness and dizziness

Palpitations and rapid heartbeat

Shortness of breath

A sore tongue that has a red, beefy appearance

Nausea or poor appetite

Weight loss

Diarrhoea

Yellowish tinge to the skin and eyes

If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:

Numbness and tingling in the hands and feet

Difficulty walking

Muscle weakness

Irritability

Memory loss

Dementia

Depression

Psychosis

That your brother's B12 and Folate are both low, despite a good diet, may mean he has an absorption problem and if he does have a thyroid problem that may well put him at risk of developing a B12 deficiency.

Is your brother on any medications?

Hopefully your brother's doctor will "accept" the private test results or he may wish to run his own tests one of which would be for Intrinsic Factor Antibodies in order the "rule out" P.A. as the cause of the B12 deficiency.

Ask your brother to make a list of his symptoms and present this to his doctor asking him to treat him according to his symptoms and (perhaps) even start him 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...

It is also important that his Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

I am not a medically trained person but there are others on here who will be able to give you more advice.

I wish you both well

Reply

Thank you for responding clivealive!

The doctor who works for the private blood test company only recommended that my brother took a multivitamin to help boost what he called his "slightly low" levels. He didn't recommend any further blood tests at all which I think is incredibly poor advice!

My brother has had periods before where he's been very unwell and had muscle twitching and fatigue and he lost a lot of weight. We have motor neurone disease in our family and a doctor told him it was likely the start of that but luckily he recovered. He's been generally well for a few years now though and isn't on any medication. We have a family history of thyroid problems so I urged him to have his checked as a precaution but it turns out that his thyroid is in good shape which is great.

I'll try to get a list of his symptoms if he has any.

Thanks

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His symptoms are neurological.

he needs to go and see his GP and share the results. It is possible that the GP may want to repeat the test results which would mean a further delay. The test would include anaemia but treatment shouldn't be dependent on anaemia being present.

if he eats plenty of meat/fish/dairy/eggs then it would be an absorption problem. he should be put on B12 loading and then maintenance shots unless the cause turns out to be treatable, which basically boils down to an h pylori infection.

PA is the most likely cause but there are other things such as coeliacs, and low stomach acidity - which could be related to PA but also becomes more problematic as you get older anyway.

Would you be in a position to accompany your brother to his appointment?

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Hi Gambit62,

Yes I could go with him, I doubt he'd want me to though! I'm sure I can pass on all the info he needs and he'll be pretty forceful about making sure it happens. I just need to make sure he's aware that it's a lot more serious than the private doc who said a multivitamin was all he needed!

He's only 30 so age should be on his side with things! He's had a few digestion problems and I've urged him to try gluten and dairy free for a while to see if it helps but he won't as it's too much of a lifestyle change so it could be an absorption problem, I just assumed iron would be a problem too if it was. Would GPs try to find the cause and look for things like coeliacs or would they only do that if you push for it?

Reply

I'd suggest testing for coeliacs before looking into diet changes - going gluten free is only going to help if that is actually the problem.

If he has any degree of brain fog then you could offer to go with him so he has a second pair of ears just in case - though it does sound as if he's likely to see it as an unwelcome intrusion.

Reply

Haha, I have thyroid problems which has resulted in me having serious brain fog for a few years now so unless I write things down then I wouldn't be able to help him much!

I just need to make sure I give him all the information he needs before he sees his doctor.

Thanks for your help

Reply

get him to read the BCSH guidelines on diagnosis and treatment of cobalamin and Folated deficiencies

onlinelibrary.wiley.com/doi...

put together a list of symptoms

pernicious-anaemia-society....

and look at info on the PAS website

pernicious-anaemia-society....

there is also a lot of information in the links in the pinned posts on this forum

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I had h pylori and i was only low on b12, not ferritin or iron. Im not sure if that was because i squeezed lime juice into my water all day (vitamin c helps iron absorbtion) or if b12, being the largest/most complex vitamin to absorb, is effected first.

I ate meat daily. I had a b12 deficiency for so long prior to getting injections that it effected many systems.

My thyroid numbers were all in range but i was still tired even after h pylori treatment until i started eating 5 brazil nuts a day for their selenium. If his doctor has not tested for reverse t3 then he might try brazil nuts. Only took 3 days for me to see significant improvement BUT i had already improved b12 with injections, was taking a good multi, magnessium, potassium, zinc, and vitamin c.

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Hi KimberinUS, sorry it's taken me a while to respond. Thank you for your comments. Are you still taking injections or has your stomach healed from the h pylori and enabled you to absorb B12 from your food now?

Reply

I was only treated for h pylori at end of August 2017 so i have continued b12 injections. Once i can be retested to make sure h pylori is gone (8 weeks min after treatment) i will have to decide then if i will stop injections to see if numbers go back down. At this point in not 100%.

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