B12 deficiency Neurological Symptoms

[olicana1949]

In the UK I was diagnosed with B12 (not PA) deficiency in Oct 2020 and have had the 6 loading doses, and one month booster. I see mentioned on this site "neurological symptoms" of B12 deficiency but can someone advise me what those are. I increasingly suffer from muscle twitching, and after gym exercises, arms, legs and body pretty shaky. That went away after the 6 loading shots but not after the the monthly booster. Measured B12 levels ar over 500 but my GP has referred me to a neurologist but who knows how ong that will take to happen and until then GP not willing to give me B12 injections more than once per month.

[Nackapan]

I think you've answered your own question. You state your symptoms went after loading doses .

It's a strange regime as mostly its every other day until no more improvement or every 2 months with Hydroxocobalamin.

Your gp is better than alot as it's often loading then 3 monthly.

That's what was supposed to happen with me.

I went back onto every other day but I wasnt walking let alone doing gym.

Do you think yoh mat be pushing your body a bit too hard and not giving it time to heal?

The list of neurological symptoms are endless and atmre listed in the PAS web or look into the above

They also overlap with many other conditions.

Levels of over 500 not that high on injections.

But high enough if just before an injection if the measurement is in the range of 200 -900

I expected the Gp waiting for the neurology assessment to rule out other things

Look at the lists of symptoms.

Look at the BNF guidelines

Make sure t

Your folate ,iron ,vitamin d levels are okay

Then keep

a log.

If symptoms clearly are returning before injection and going after report this to your Gp.bpteftabkt in writing.

Your Gp can prescribe more if it's in the interest of the patient .

Many buy it and inject between prescription ones.

I would work with your gp first as early days in my opinion.

[fbirder]

Symptoms of a B12 deficiency - pernicious-anaemia-society....

Neurological Symptoms

Balance Problems

Dizziness/Feeling Faint

Numbness/Tingling/Pins and Needles

Burning Legs and/or Feet

Neuropathic Pain

Vertigo

Tinnitus

Loss of smell, taste and/or touch

More info on the web site.

[Prettywoman73 in reply to fbirder]

Hi there I suffer from b12 and I’m having injection every 3 months but I suffer with dizziness and lightheaded ness and sometimes my eyes go weird I don’t know if anyone else suffers with this as I’m so scared

[Anderson2022 in reply to Prettywoman73]

Same here. Don't be scared. I started my B12 injections a week ago and have improved around 40%.

[Prettywoman73 in reply to Anderson2022]

Hi good morningI got diagnosed with b12 in 2019 and it was only last year I started with the dizziness and lightheadedness when I asked the nurse if it was related she said no, but I’m sure it is and with her saying no that makes me feel uncomfortable as someone in the medical profession who is administering my injections doesn’t know anything , it’s so hard to get to see my GP as they are still not having face to face consultations only phone calls .

[Brainfoglady]

Hello - the neurological symptoms from b12 deficiency take ages to resolve. The loading doses had no effect on my condition so I begged for 2 more sets of loading doses. Then I kept returning to see my dr as I felt so bad and kept writing letters about the danger of my neurological symptoms. Eventually he allowed 3 weekly jabs. I never feel well but my brain functions and my feet have stopped burning now. I was never able to return to any form of exercise except gentle walking

[waveylines]

Sorry to hear of your plight. Your GP should be prescribing every other day until no further improvement. This can be for many many months. Two years on I am still on daily. You might want to give them a copy of the NICE guidelines. Most GPs worry about toxicity but you cant overdose on B12.

The other site to look at is B12d.org. They have a detailed assessment for B12 in which there are many symptoms. Would be worth doing and showing your doctor. Neurological can be be very wide affecting people in different ways such as tremors, blurred vision, memory loss, problems walking, balance problems, burning, tingling, numbness, bowel or urine incontinence. Dr Chandry -GP- wrote a really good book on b12 deficiency which is on Amazon.

[protolawn in reply to waveylines]

Note: Went to look up mentioned book, author's name is "Chandy" (misspelled above, easy mistake to make). Title is "Vitamin B12 Deficiency in Clinical Practice".

[protolawn in reply to waveylines]

And even spelled "Chandy" didn't come up right away in Amazon.com. Here's the author's full name (& the co-author): Dr Joseph Chandy (Kayyalackakom) and Hugo Minney PhD

[umbriargo in reply to protolawn]

I've read the book, which is excellent. I have to say, how badly the author, Dr Chandy suffered at the hands of then local PCT who imposed a ban on b12 treatment. THankfully this was all overturned.

[waveylines]

Apologies for the lack of info on the book. Heres a link which tells you all about it.b12d.org/book

[Sleepybunny]

Hi,

"I was diagnosed with B12 (not PA) deficiency"

What does your GP think has caused your B12 deficiency?

What's your diet like?

Do you eat plenty of B12 rich foods eg meat, dairy, eggs, fish and foods fortified with B12?

If yes to b12 rich diet then it's more likely that there is an absorption problem in gut eg PA, coeliac disease, Crohn's disease etc.

Have you at least been tested for PA and coeliac disease?

Other possible causes of b12 deficiency include

exposure to nitrous oxide

some medicines/drugs (metformin (a diabetes drug), PPI drugs and others)

internal parasites eg fish tapeworm

excess alcohol intake

damage to terminal ileum (part of gut where B12 is absorbed)

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

B12 Deficiency Info website

PAS (Pernicious Anaemia Society) can offer support and info about PA.

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS members can access useful leaflets/articles on PAS website.

Some can be accessed by non members.

pernicious-anaemia-society....

Link about "What to do next" if B12 deficiency suspected or recently diagnosed.

b12deficiency.info/what-to-...

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

There are useful diagnostic flowcharts in above document.

BNF Hydroxycobalamin

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

NICE CKS

cks.nice.org.uk/anaemia-b12...

Each CCG/Health Board/NHS Hospital trust will have its own local guidelines on treatment/diagnosis of b12 deficiency.

I suggest you track down the local guidelines for your area of UK and compare them with BSH/NICE CKS/BNF links.

Some local guidelines can be very unhelpful. I hope you are not in the area of UK mentioned in blog post below.

b12deficiency.info/blog/202...

"That went away after the 6 loading shots but not after the the monthly booster"

BNF recommended treatment pattern for B12 deficiency without neuro symptoms is ...

6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months

BNF recommended treatment pattern for B12 deficiency WITH neuro symptoms is ...

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months

There is no set time limit as to how long the every other day loading jabs can continue. Could be weeks even months of every other day jabs if symptoms continue to improve.

If you have neuro symptoms, I would expect you to have been put on every other day loading jabs for as long as symptoms continued to improve...not just a set of 6.

If I understood you correctly, you are getting a maintenance injection every month which is more often than many UK forum members get.

Mild dietary B12 deficiency is sometimes treated with low dose oral b12 tablets.

"my GP has referred me to a neurologist "

Has your GP referred you to a haematologist?

NICE CKS link in this post suggests GPs should seek advice from a haematologist for patients who have B12 deficiency with neuro symptoms. Has your GP done this?

If you have gut symptoms, have you been referred to a gastro enterologist? They should be able to spot signs of gut damage that could lead to absorption problems.

Neuro Symptoms

tingling

numbness

pins and needles

burning sensations

insect crawling sensation (known as formication)

tinnitus

muscle twitches

muscle fasciculations (ripple like movements)

flickering eyelids

restless legs syndrome RLS

vertigo

clumsiness

dropping things

bumping into things

strange gait (unusual way of walking)

word finding problems (nominal aphasia)

memory issues

confusion

balance issues

brainfog

proprioception problems (problems with awareness of body in space)

Make sure your GP has a list of all your symptoms, especially every neuro symptom.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

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

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Coeliac disease

If you've been tested for coeliac disease in past, I suggest you check that your doctors followed the advice in the NICE guidelines below.

From personal experience, some doctors don't...

The guidelines suggest that anyone with an unknown cause of b12, folate or iron deficiency should be tested.

NICE guidelines Coeliac Disease

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

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).

BNF treatment info in this book is out of date.

See BNF Hydroxycobalamin link for up to date info.

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

Very comprehensive with lots of case studies.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about under treatment of B12 deficiency with neurological symptoms present. The link has letter templates that people can base their own letters on.

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

Keep copies of any letters sent or received.

CAB NHS Complaints

citizensadvice.org.uk/healt...

May be worth talking to local MPs/devolved representatives about any difficulties in getting treatment.

Vital to get adequate treatment or there is an increased risk of permanent neurological damage.

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....

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.

A warning ......

B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.

I've written some very detailed replies with lots of B12 info eg symptoms lists, causes of b12 deficiency, more useful B12 books, more B12 articles, hints about how to deal with unhelpful GPs etc that you may find of interest.

See links below.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

[olicana1949 in reply to Sleepybunny]

Many thanks for such a comprehensive response, lots more to read than I have so far read. Since September 2020 I have had many blood tests (I do not know what they have tested) including IF which proved OK (thus I deduce I have B12 deficiency and not PA). B12 running at 570 2.5 months after loading. Status since yesterday GP visit is that he has given me three loading shorts in the next week, but wont go to the regular every two days until I have seen a neuro consultant and at the moment (Aberdeen) none are being offered with COVID still prevalent, the waiting time is indefinite. He will refer me to a private Neuro if I find on and apart from that he has nothing more to offer. He was not aware of the "active" element of the NHS B12 blood test (as NHS dont do it) so have considered getting that done through home kits but after this weeks 3 loading shots uncertain what would be the best time to get such a test.

[Sleepybunny]

Hi,

"Since September 2020 I have had many blood tests (I do not know what they have tested) including IF which proved OK (thus I deduce I have B12 deficiency and not PA)."

You should be able to find out what they have tested.

Your GP surgery website should have details on how to access your blood test results online.

Accessing Health Records (Scotland)

nhsinform.scot/care-support...

Newspaper article about patient struggling to get B12 treatment in Scotland

eveningtelegraph.co.uk/fp/i...

And a positive follow up story

eveningtelegraph.co.uk/fp/b...

Health Boards Scotland

scot.nhs.uk/organisations/

Haven't been able to find out what the local guidelines are for your area but found these guidelines for Lothian.

apps.nhslothian.scot/refhel...

It is possible to have PA (Pernicious Anaemia) even if IFA (Intrinsic Factor Antibody) test result is negative.

Does your GP know that it is possible to have Antibody Negative PA?

More about Antibody Negative PA in guidelines below.

BSH Cobalamin and Folate Guidelines

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

A Scottish National Formulary (SNF)is being developed.

This will give recommendations on what drugs/medicines can be prescribed in Scotland and may affect what GPs can prescribe for B12 deficiency.

Scottish National Formulary development process

emig.org.uk/wp-content/uplo...

I believe at moment that the BNF (British National Formulary) is used in Scotland.

BNF

bnf.nice.org.uk/

BNF Hydroxycobalamin - adults

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

Petition to Scottish Parliament about B12 deficiency (covers period from 2011 - 2018)

parliament.scot/GettingInvo...

Click on underlined headings in link above for more info.

Support Groups in Scotland (no face to face meetings during pandemic)

There is a PAS support group in South Scotland...think it needs a group co-ordinator at moment.

pernicious-anaemia-society....

There is also a Thyroid Support group in Kilmarnock which welcomes people with b12 deficiency

healthunlocked.com/thyroidu...

B12d.org has organised some Zoom meetings in past but not sure if these are happening at the moment.

b12d.org/

News story about MP in Scotland who raised concerns about treatment of patients with PA

douglasross.org.uk/news/mor...

[Sleepybunny]

Hi,

I came across a B12 charity based in Scotland.

theb12society.co.uk/