B12 Specialist in the South East/London

[JERandall]

In 2009 I was suffering from tingling in my feet, legs, hand and arms. The GP ordered several tests and all were normal. A friend who runs a health and wellness clinic looked at my results and advised me that my B12 was extremely low and only just above recommended guidelines and told me that if I was in Europe or Japan I would be receiving B12 injections. She sourced me some sublingual drops and all my tingles disappeared. I have been self medicating since in the last few months, all the symptoms of a B12 deficiency have returned and magnified. The GP repeated all the tests for ferritin, B12, intrinsic clotting factor, vitamin D, calcium and myeloma and all were negative. The next step is to be referred to a neurologist to check for MS. Having done a lot a research, I have learnt that as you age (I am in my 60's) the body often does not absorb B12, that the intrinsic factor antibody test is not very reliable and that you cannot overdose on B12 and soI am keen to see a specialist and hopefully get some B12 injections to rule out or in whether I have a B12 deficiency. I know you are not allowed to mention any names on the forum but if anyone can point me in the direction of someone who could help, I would very much appreciate a PM. Thanks in advance.

[Jillymo]

PM on its way.

[JERandall in reply to Jillymo]

Thank you!

[Sleepybunny]

Hi,

Just a few thoughts...

"The GP repeated all the tests for ferritin, B12, intrinsic clotting factor, vitamin D, calcium and myeloma and all were negative"

Did you check the results yourself? I was told everything was normal when my symptoms were really bad and when I checked results I found abnormal and borderline results.

It may still be possible to get GP to give you B12 injections.

It's possible to have severe B12 deficiency symptoms with normal range serum B12.

b12info.com/your-serum-b12-...

If you have time, look up Functional B12 deficiency. This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so person develops deficiency symptoms.

MMA, homocysteine and Active B12 (holotranscobalamin) tests may help to diagnose functional B12 deficiency.

My understanding is that in UK, people who are symptomatic with normal range serum B12 should be treated.

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

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.

Both MS and B12 deficiency can cause damage to the myelin layer around nerves. B12 deficiency is sometimes misdiagnosed as other conditions.

b12info.com/misdiagnosis/

Simple diagram comparing MS with B12 deficiency

verywellhealth.com/vitamin-...

Search online for this UK document "NICE CKS - Anaemia - B12 and folate deficiency" and compare it with your ICB's (Integrated Care Board) or Health Board's B12 deficiency guidelines if you can find them.

NICE are currently developing new B12 deficiency guidelines to be published in 2024.

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

Unhappy with Treatment (UK info)?

How to write letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Thread about Patient Safety, has useful links for those in UK having difficult health experiences with B12 deficiency

healthunlocked.com/pasoc/po...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership is separate to membership of this forum.

pernicious-anaemia-society....

Testing for PA

pernicious-anaemia-society....

Thread about tests for PA/B12 deficiency

healthunlocked.com/pasoc/po...

Sadly many on this forum meet health professionals who lack understanding of PA and B12 deficiency.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

B12 article from Mayo Clinic in US

Aimed at researchers and doctors.

The Many Faces of Cobalamin (Vitamin B12) Deficiency

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

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

Two useful b12 books

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

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

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

Very comprehensive with lots of case studies.

Lots more b12 info in pinned post "Various PA/B12D resources".

I'm not medically trained.

[JERandall in reply to Sleepybunny]

Thank you for such a comprehensive answer. It is much appreciated. I will get all results and check out all the links.

[Sleepybunny in reply to JERandall]

Hi again,

A bit more info....

Severe B12 deficiency can affect spinal cord and brain. It can cause white matter lesions due to demyelination. It's possible to experience severe B12 deficiency symptoms even when serum B12 is within normal range.

Research articles may have details that could be upsetting.

Do you have any of these neuro symptoms?

There are many more than the ones I listed - check symptoms lists in other reply.

Balance problems

Clumsiness

Bumping into things

Dropping things

Memory problems

Migraine

Word finding difficulty (nominal aphasia)

Tingling

Pins and Needles

Insect crawling sensation (formication)

Electric shock sensations

(Medical name for unusual skin sensations is paraesthesias - search online for B12 deficiency Paraesthesias)

Burning sensations

( I used to get the sensation that water was trickling down my spine)

Numbness

Incontinence - bladder and bowel

Muscle twitching

Periodic limb movements (jerks)

Restless legs syndrome

Proprioception problems

Proprioception sense is awareness of where your body is in space.

If you find your balance is worse when it's dark, your eyes are closed or your view of surroundings is blocked then that's suggestive of possible proprioception problems.

For example I used to fall off the pavement if someone walked directly towards me and I couldn't see ahead. It took tremendous concentration to walk in a straight line in the dark and I also used to smash crockery when reaching for things.

Get your neurologist to fully check your proprioception sense.

If they don't give you neuro tests where your eyes are closed then it's possible that they have not fully tested proprioception.

Tests below should only be carried out by a doctor due to risk of injury from loss of balance. Don't do them at home...I stupidly did and almost walked into a wall.

Two neuro tests that might help to check proprioception sense are

1) Romberg test

2) Walking heel to toe with eyes closed

A person with proprioception problems may be able to walk easily heel to toe in a straight line with eyes open but struggle to do it with eyes closed.

Videos of these tests and other neuro tests can be found on Youtube.

I've gone on about proprioception problems because they are often associated with B12 deficiency and sometimes with folate deficiency.

Search online for "Proprioception B12 deficiency" for more info.

If your doctors think MS is a possibility, might be worth asking them and the neurologist to also assess you for SACD, sub acute combined degeneration of the spinal cord due to B12 deficiency.

PAS leaflet about SACD

pernicious-anaemia-society....

Recent BMJ (British Medical Journal) article about B12 deficiency

This is written by one of the few doctors (in my personal opinion) who understands B12 deficiency. Good one to pass to GP/specialists.

If I'd had this doctor, I don't think I'd have suffered for almost 20 years without treatment.

bmj.com/content/383/bmj-202...

Have a look at the responses to the article if you have time.

bmj.com/content/383/bmj-202...

The same doctor also wrote an article for PAS website in December 2023.

pernicious-anaemia-society....

Self treatment

Many UK forum members resort to treating themselves if NHS treatment is not enough.

Some get extra B12 injections from a private GP or beauty salon. Some try high dose oral B12 (1000mcg or higher) but these don't work for some people and some as a last resort turn to self injection (SI). There is a pinned post about SI.

I was forced to treat myself because my NHS doctors at the time refused to treat me.

Help for GPs and specialists

Might be worth pointing these out to your doctors.

1) PAS have a page for health professionals

They can join PAS ( no charge) as associate members.

pernicious-anaemia-society....

2) Club B12 is a group of researchers and doctors looking into B12.

They have regular zoom meetings.

club-12.org/

3) I think the B12 article from Mayo Clinic is worth passing to doctors (link in other reply)

Also the recent BMJ article B12 deficiency by B, Wolffenbuttel (link up page).

Good luck getting the treatment that is right for you.

[Cherylclaire Forum Support in reply to Sleepybunny]

Hi Sleepybunny-

I'm also a big fan - part of the Wolffpack !

[EllaNore in reply to Sleepybunny]

So nice to see your post sleepybunny. Hope you're feeling better.

[KevinPhillipsBong]

Hi, just weighing in while I look for answers to my new current issues... Apropos the tingling, are you suffering from lack of sensation at all? 18 months ago i had tingling in the limbs for about 10 days then suddenly complete facial paralysis, diagnosed after 48 hours as abnormal Guillain-Barre Syndrome. 5 x daily IVIg treatments stopped the progress & it took 4 months to recover.... Luckily for me, others have limb paralysis with residual effects for years. The main issue was that my GP did not recognise the symptoms - tingling, hands, feet, back, felt like my blood was burning, had no awareness of cold or hot on my skin. The IVIg was miraculous, get onto it quick. GBS can only be confirmed with a spinal tap. Good luck