Numbness in hands and face. Today I have Numbness in my thumbs and fingers

[sobs1962]

Today I have has numbness in my thumbsand fingers and also near my mouth similar to what you get,when given a numbing injection at the dentist. This has me extremely worried as I know that b12 deficiency/pernicious anemia can cause irreparable damage to the nervous system and also the tests used to diagnose it are extremely inaccurate and inadequate and knowing my medical practice, they would test and say everything is"normal" and to hell with the consequences of not diagnosing me correctly. I don't want to end up permanently disabled because UK doctors haven't got the knowledge to do their jobs.

[deniseinmilden]

It's horrible, isn't it! You do have my sympathy - and others here will be sympathetic too.

The good news is that you have found us and between us we will try to help you - welcome to the forum!

I don't think they can refuse to blood test you for B12 (and folate while they are testing) if you ask them specifically to do it and if they do you can ask them why not. You can ask them to at least rule it out! If necessary you can change practices.

You are entitled to get your exact results, not just their potentially dismissive interpretation of them so that isn't too much of a problem.

If you need injections, getting them can prove more tricky, especially if you are only have a borderline deficiency but there are ways around it and we can help you with that too.

The good news in the meantime is that short term nerve damage is usually completely reversible so if you can get your results, and then treatment you should be OK again in the long run.

This is going to be the year you get to the bottom of this and get yourself back on track!

[Hidden]

As denise says get tested, one thing that is advisable is to get a printout of the results, do not rely on receptionist or doctors saying all o.k., as many here have found out years later that there results were low or borderline low.

Once you have results please come back and post them on here without your name and surgery/dr. Name. Everybody here can try and help.

[Sleepybunny in reply to Hidden]

"one thing that is advisable is to get a printout of the results, do not rely on receptionist or doctors saying all o.k"

I agree with Sallyannl.

Best piece of advice I ever got was to always get copies of all my blood test results.

I am aware of forum members who have been told everything is normal/no action on blood tests when there are actually abnormal and borderline results.

Accessing Health Records (England)

patients-association.org.uk...

Some people access test results and medical records with NHS app.

nhs.uk/nhs-app/nhs-app-help...

Retention of UK medical records

bma.org.uk/advice-and-suppo...

Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.

If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place.

[Mozza127]

Do you Si b12 or does ur doctor do it

[sobs1962 in reply to Mozza127]

Sorry , do you si b12 or does your doctor do it? Don't understand, can you please explain

[Littlelodge123 in reply to sobs1962]

SI is what people on here use as shorthand for ‘self inject’. A number of us feel under treated by our GPS, or not treated at all, and so we order our own B12 from German pharmacies and inject it ourselves at a time spacing that suits our needs.

[Mozza127 in reply to sobs1962]

I Self inject one month and then doctor so I get a shot every month cus doctors won't go less than every 8 weeks

[chrisbuy63]

Look at symptoms of calcium and Vitamin D deficiency..

[Sleepybunny]

Hi,

I've assumed you're in UK.

Patterns of treatment and type of B12 used can vary between countries so it's helpful to know which country you are in.

Some links I post may have details that could be upsetting.

You may find it helpful to have someone read through the info with you.

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

b12deficiency.info/what-to-...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

PAS website has lots of useful leaflets and a page for health professionals that your GP may find helpful.

pernicious-anaemia-society....

pernicious-anaemia-society....

Testing for PA

pernicious-anaemia-society....

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link above has letter templates to help people compose their own letters.

Point 1 is about under treatment of B12 deficiency with neuro symptoms.

Point 5 is about being symptomatic for B12 deficiency with an in range serum B12 result.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

BNF Hydroxocobalamin

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

NICE CKS B12 deficiency and folate deficiency

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

Each CCG/Health Board/NHS hospital trust is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency.

I suggest you track down the local B12 deficiency guidelines for your CCG/Health Board and compare the info in them with BNF, NICE CKS and BSH links.

I hope you are not in the UK area discussed in blog post below which has a poor reputation on this forum for how B12 deficiency is managed.

b12deficiency.info/gloucest...

To find local B12 deficiency guidelines for your CCG/Health Board

1) Search forum posts with term "local guidelines" as some have been posted.

2) try an internet search using "name of CCG/Health Board B12 deficiency guidelines"

3) submit a FOI (Freedom of Information) request to CCG/Health Board asking for a link to or copy of local B12 deficiency guidelines.

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).

BNF treatment info (UK info) in book is out of date. See BNF hydroxocobalamin link in this reply for up to date info.

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

Very comprehensive with lots of case studies.

"and knowing my medical practice, they would test and say everything is"normal" and to hell with the consequences of not diagnosing me correctly"

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.

Misconceptions about a B12 deficiency

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

stichtingb12tekort.nl/engli...

Blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

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

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

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

Some links may have details that could be upsetting.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

"I don't want to end up permanently disabled"

The NHS refused to treat me despite my numerous requests (long complicated story so won't bore you).

I realised that if I wanted to avoid dementia and permanent spinal damage, I had to get treatment somehow...I already had dementia type symptoms and pins and needles in my spine.

As a last resort I decided to treat myself but am still angry that I was forced into doing this due to the ignorance of my GPs.

There are other forum members who have had to resort to treating themselves...it shouldn't be like this.

Even those in UK who manage to get NHS treatment are often rationed to 4 injections a year which many find inadequate. See BNF hydroxocobalamin link for details of UK treatment.

Some find they can manage by taking high dose oral B12 eg 1000mcg cyanocobalamin although some find oral treatment ineffective. Some get B12 injections privately but this was not an option for me as too expensive.

[Mashie44]

It is frightening! you will find lots of support and good advice here. I had numb feet and legs for 10 years before i was diagnosed. While my left leg has never recovered, the rest is much improved (I SI weekly and take folate and vit D). Like you I was worried when my cheek went numb and also when my hands started tingling, but I have found that happens rarely - in my case it didn't lead to a deterioration although it was frightenin, and going to a jab every 2 days for a week got rid of the extra tinglies. I hope that is the same for you - but do make sure you take supplements and get enough injections!

[sobs1962 in reply to Mashie44]

I am currently in hospital having had a TIA and not sure if b12 deficiency can actually cause a stroke or stroke like symptoms, they've said my carotid arteries are blocked especially my right side and looking at an operation to clear the blockage, plus putting me on statins and other drugs to thin my blood and make it less "sticky"

[Mashie44 in reply to sobs1962]

omg you poor thing ... thinking of you and sending healing vibes!

[Sleepybunny in reply to sobs1962]

Hi,

I am very sorry to hear that you are in hospital and hope you are out as soon as possible.

B12 deficiency can be associated with high homocysteine levels.

High homocysteine levels can be associated with an increased risk of stroke.

Link about homocysteine blood test

labtestsonline.org.uk/tests...

There's more I could add but don't want to overload you.

Let me know if you want more information.

[Hidden in reply to sobs1962]

Sorry to read about you being In hospital, wish you well !

[sobs1962 in reply to Hidden]

Thanks, having an carotid endarterectomy tomorrow, which is surgical removal of blockage in carotid artery and will have to remain on high dose statins after that and obviously need to do a major overhaul of my lifestyle if I hope to live for a good few years yet

[Hidden in reply to sobs1962]

🤞 you will be fine, maybe just maybe your doctors will now be more hands on in your treatment. Will be thinking of you and look forward to hearing from you when you recover !

🌹🥀🌺🌻🌼 hope you like the flowers !

[sobs1962 in reply to Hidden]

Thanks, they're gorgeous, am extremely anxious about the operation especially when they explain what all the potential risks are, but said I'm more at risk of further stroke or TIA, without the operation than with it, so just have to have faith in their expertise and experience and trying having a tiny amount of faith in my ability to heal from all this it's so hard when you have such serious mental health problems. My family have faith in me but not myself.

[Hidden in reply to sobs1962]

You'd be surprise at what one is capable of when your back is up against the wall !I also feared having back operation, but know without it life would be alot worse. ,

Have faith !

🙏