B12 and folate deficiency?

[Trish]

I have been experiencing some problems with walking and balance for some time. Left foot feels numb and seems to wander all over the place. I start off ok but after a couple of hundred yards, tire and feel off balance. I can’t seem to walk without looking down to either make sure I don’t trip or to make sure I know where my feet are. My muscles are pretty weak in hands and feet. I had a fall a few weeks ago, I can’t actually remember how it happened as I might have hit my head and had a degree of concussion. Vague memory of someone possibly barging into me and I fell backwards, hitting base of spine and probably back of head. I can’t remember who helped me up but someone must have. Only remember walking back to the car and driving home! I went to the docs eventually as was still feeling sore and off. Obviously he said should have gone straight to A&E where they might have done brain scan. Bit late for that now but did loads of blood tests and tested reflexes and balance which was obviously a problem. I have had a pelvic X-ray but still waiting for results. He has referred me to a neurologist but local hospital appears to have at least 40 week wait. Have googled somewhat and think my symptoms might indicate b12 deficiency. However blood tests show b12 as 408 in a range of 180-640 but serum folate as 6.6 in a range of 3-20. I do have long-standing hypothyroidism which I self treat with NP thyroid. I realise there could be other medical causes but am wondering if I can arrange any other private tests that would indicate a possible problem with using b12 from my blood. I did do an active B12 test in November which was 93.4 in a range of 37.5-188. Am I wrong to consider this as a possible explanation to walking and balance problems?

[Nackapan]

Although b12 well in range its possible.

An MMA is sometimes done if no other explanation found.

This is raised if b12 not reaching cell level.

Same with homocysteine test.

IfA test shoes about 50% of those with PA.

Auto immune diseases often come together.

Post concussion gives same symptoms too

I had same symptoms .

Also a series of falls.

Chicken and egg ??

I haven't hypothyroidism so am not familiar with the symptoms from that.

Hope you are seen soon

[Sleepybunny]

Hi,

It is possible to have B12 deficiency symptoms with normal range or even above range serum (total) B12.

You could look up functional B12 deficiency which is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells.

Your active B12 (also known as holotranscobalamin/HoloTC) result seems well within range.

Have you also had MMA test and Homocysteine tests and have you got any results for serum (total) B12 ?

A high level of serum B12 without having supplemented B12 can be associated with a serious health condition. I would expect a doctor to test liver and kidney function and to do some other tests if patient has high serum b12 without supplementing.

Forum members often report folate , iron and Vitamin D deficiencies so worth getting these checked along with full blood count (FBC).

Were you supplementing with B12 when you had your Active B12 test?

You mention thyroid issues. Having an auto immune condition can increase the chances of developing further auto immune conditions. PA and coeliac disease are auto immune conditions that can lead to B12 deficiency.

A few links that might be useful ...

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Testing for PA

pernicious-anaemia-society....

I've also read that a pepsinogen test may help to diagnose PA.

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

cks.nice.org.uk/topics/anae...

b12-institute.nl/en/symptom... (B12 Institute Netherlands)

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Next link about causes is from a Dutch B12 website

b12-institute.nl/en/causes-...

UK B12 documents

NHS article about B12 deficiency (simply written - mentions functional B12 deficiency)

nhs.uk/conditions/vitamin-b...

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

BNF Hydroxocobalamin

bnf.nice.org.uk/drug/hydrox...

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.

nice.org.uk/guidance/indeve...

If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.

Local B12 deficiency guidelines in UK

Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.

Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.

If you want to know why I suggest getting hold of local guidelines, read blog post below

b12deficiency.info/gloucest...

NICE guidelines Coeliac Disease

nice.org.uk/guidance/ng20/c...

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

UK BNF treatment info is out of date in above book.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Films and videos about PA and B12 deficiency

PAS conferences

pernicious-anaemia-society....

Films about B12 deficiency

b12deficiency.info/films/

PA and B12 deficiency is not always as well understood as it should be by doctors and other health professionals.

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.