B12 symptoms

[olicana1949]

Only recently diagnosed as B12 deficient. One symptom that I have attributed to the condition, but I'm not very sure, is "twitching" of arms and fingers, sometimes it there, sometimes it isn't. Its particularly noticeable in the fingers. Along with that on a couple of occasions after fairly strenuous exercise (eg sawing logs by hand) I've sat down and arms and hands are twitching very frequently, then after about 15 mins they settle back down to just the occasional twitch. Has anyone else experienced this and does it go away with B12 injections (I have my first 3 monthly booster next week).

[Sleepybunny]

Hi,

Twitching can be a neurological symptom. Do you have any other neuro symptoms?

If you have neuro symptoms and if you're in UK, I'd expect you to be getting injections every 2 months. See BNF link in this thread and read section for patients with "neurological involvement".

Some links about PA and B12 deficiency that might be of interest.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Has your GP got a list of all your symptoms especially all neuro symptoms?

Unhappy with Treatment (UK info)?

I suggest putting any queries about treatment/diagnosis into a brief, to the point and polite as possible letter to GP and maybe copied to practice manager.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about being under treated for B12 deficiency with neurological symptoms present.

Link has letter templates that people can base their own letters on.

CAB NHS Complaints

citizensadvice.org.uk/healt...

Local MP/devolved representative may be worth talking to if struggling to get recommended level of treatment.

Suggest you read the documents below if in UK.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

There are some useful diagnostic flowcharts in above document.

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF Hydroxycobalamin

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

NICE CKS

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

Above link suggests that GPs should seek advice from a haematologist for patients with b12 deficiency with neuro symptoms present.

If GP won't refer you to a haematologist , maybe they can write to a local haematologist for advice on how to treat you.

Each CCG/Health Board and NHS Hospital Trust in UK is likely to have their own local guidelines on treatment/diagnosis of B12 deficiency.

Some of these local guidelines may need updating and some do not reflect what is in the BSH Cobalamin and Folate Guidelines.

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

If you suspect you have PA, have you thought about joining PAS who can offer info and support?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

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

b12deficiency.info/what-to-...

Vital to get adequate treatment for B12 deficiency as being untreated or under treated can lead to 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.

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 book is out of date. See BNF link in this reply 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.

Lots of B12 info in my replies on the the thread below eg symptoms, causes of B12 deficiency, more B12 books, B12 websites, more B12 articles/documents and a few hints about dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

I have written other very detailed replies on the forum that you might find helpful.

I am not medically trained.

[olicana1949 in reply to Sleepybunny]

Thanks for the very comprehensive reply, I'll work my way trough the references. Prior to my diagnosis (and 6 shots of B12) I had tingling and numbness from time to tie in little fingers and toes both sides, but that has not returned after 3 months, its just the twitching, and also aching of bones in arms and legs, that too comes and goes. 3 month booster tomorrow so we'll see what symptoms disappear. I'll be interested in your reference to boosters every two months, although my blood level B12 showed 500+ 10 days ago, up from 207 at time of diagnosis..

[Sleepybunny in reply to olicana1949]

Hi,

"Prior to my diagnosis (and 6 shots of B12) I had tingling and numbness"

Tingling and numbness is usually considered a neuro symptom.

If you had neuro symptoms prior to starting treatment and you're in UK, my understanding is that you should have been on every other day loading injections until symptoms stopped improving...not just six over 2 weeks.

There is no set time limit for how long the every other day loading injections can continue for, could be weeks even months.

See BNF and BSH links for more info.

Might be worth looking at symptoms lists below to see if you have any other neuro symptoms and I suggest you make sure your GP is aware of any neuro symptoms you have.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Peripheral neuropathy symptoms

nhs.uk/conditions/periphera...

"3 month booster tomorrow so we'll see what symptoms disappear"

I suggest you consider keeping a daily symptoms diary that tracks changes in symptoms over time and if and when treatment is received.

It could be useful evidence to show your doctors of improvement or deterioration in symptoms and may be helpful if you need to argue your case for injections more often.

[LizWilsonpa in reply to olicana1949]

Hi. Just to note you mention your B12 level is now 500+ on re-testing. Testing is not needed once B12 deficiency/PA is identified as it will not accurately indicate your B12 levels once having injections. Mine has been over2000 when re-tested. Doctors sometimes - wrongly - suggest you no longer need B12 injections as a result.

Search the forum to find out more. (I'm afraid I only remember main info but other posts give details of guidance and so on). Good to hear you're seeing positive results.

[Dexy123]

Yes, get twitching (pretty much anywhere but includes hands or arms) which I attribute to b12d. As a symptom it pretty much disappeared for several weeks after loading doses but has since returned with a gap in injections due to the pandemic and also being only prescribed injections every 3 months. Seems to be mentioned as a symptom for b12 issues and people seem to recommend taking magnesium to help. I spray magnesium onto skin but I’m not really sure whether it actually does anything to help.

[olicana1949 in reply to Dexy123]

I have considered magnesium supplements, but there are various types of magnesium (eg carbonate) - have you investigated which is best, you sound to be in a very similar situation to myself

[Lunario]

Sounds familiar. It seems that you are at early stage of treatment, right? It needs time to heal damaged nerves. Be patient. A symptoms' diary can be helpful. Sleepybunny gave you a comprehensive list of links, work through it because doctors have often very little knowledge regarding B12 deficiency (it's a disgrace).

When I try to space out the frequency of injections, tingling in arms and fingertips and muscle weakness in my calves is crawling back. I was diagnosed in 07/2019. After a bit forth and back I am again on SI every other day. Everybody is slightly different, in time you will find out what works best for you.