Pernicious Anaemia Society
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Could I be B12 deficient?

I've been following these posts for several months now in the hope I may find some answers to my symptoms. I haven't got anything conclusive from doctors as yet, with a first time appointment with a neurologist in 2 weeks and a follow up with the haemotologist 2 days later, so I was hoping for some advice on what to ask them as doctors are often keen to cite anxiety as the root cause.

I have been 'unwell' for around 4/5 years with weakness of the body and aches in some joints, breathlessness, random extra heart beats and palpitations, vision disturbance, weight loss , loss of appetite, extreme thirst/dry mouth and subsequent passing of a lot of water, dry leathery skin, sudden onset of (now chronic) constipation, eyelashes, eyebrow and head hair loss, cuts with prolonged bleeding and no pain, wounds slow to heal, disorientated and dazed, poor memory, pins/needles in hands,feet and top of spine, cramps in hands, feet and legs, numbness in hands, feet and top of spine, inflamed gums and metal taste in the mouth, vertigo, spine pain, very sleepy/lethargic. These symptoms were exacerbated after surgery last September, and I have been a frequent visitor to my GP surgery since February as I feel like I can't function, but they don't know what's wrong as most blood results are normal.

I queried my serum B12 which was quite high despite no supplementation (I was told to stop supplementing multi vitamins 2 years prior as a result of a previous high B12 reading), it was 932ng/L (190-660ng/L). Folate was also just higher than range 10.1ug/L (5-10ug/L). Haemoglobin 111g/L (115-165g/L) and ferritin 11ug/L (13-150ug/L), packed cell volume 0.34 L/L (0.37-0.47L/L), MCV 91fL (78-97fL), MCH 29.3 pg (27-34pg) MCHC 322 g/L (310-360g/L). The only thing they ever find is iron deficiency and I received an iron infusion from the haemotologist in June as I don't tolerate tablets well. That has helped rid some symptoms but others remain. I was trialing out herbal and homeopathic remedies and other alternative therapies, with some relief.

Doctors have excluded diabetes and thyroid problems, I've had chest x- rays, brain CT scan (some years ago when I was Vitamin D deficient) a battery of other blood tests, an endoscopy and colonoscopy (which showed mild inflammation) but nothing else shows up (except raised cholesterol). I had holoTC privately tested at St Thomas's hosp, it was high (>128 pmol/L) and out of their range of 70-108 pmol/L. Could I have a functional deficiency and if so how to establish that? My GPs don't know what's wrong, one effectively wrote me off after a few years and the other wants to get to the bottom of this, hence the referrals to the 2 specialists, though he thinks I should see a rheumatologist... Apologies for the long read and thanks in advance for any advice!

4 Replies

The best way to tell is to get tested for levels of MMA (methylmalonic acid) and/or homocysteine.

These are both chemicals that get used up in reactions mediated by B12. If there's not enough B12 in the cells then these chemicals can build up. If you get tested for them and the levels are high then one possible reason is that you don't have enough B12 getting to where it needs to be.

The MMA test would probably be easier to get than the homocysteine. There are places that will do it privately. The place you had your holoTC done will almost certainly do it.

Get the neurologist to test your hands/feet for numbness and presence/absence of reflexes as well as your balance. These tests are quite good evidence for something physically wrong.

1 like

Thanks fbirder, I'll get these done as soon as I can.


I am very new to the forum, but I do feel for you.

I feel so sorry for you.

I did read your whole message.

It is not a vitamin B12 deficiency that you are suffering from!

Your blood tests shows that?

What I did notice from your post was the metallic taste?

Somebody else may correct me, but that is a common side effect of in increase in iron intake?

Reading your whole post though?

It actually sounds a bit like menopause?

I do not know your age, but your symptoms are those of pre/post menopause? My ex girlfriend who was going through the menopause, did complain of a metallic taste in her mouth, which is a classic symptom! Hair loss, thirst. Frequent visits to the toilet. That is what drew me to reply! She also suffered badly with a lot of the problems you have described

I may be wrong, but I thought it was worth mentioning!

Hormone therapy may help you a lot, if that is the case. It helped her an awful lot!

I hope you get to the bottom of your problems.


1 like

Thanks patez.


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