Low folate struggling to walk

[Merkat90]

Good evening my folate vit d is low I am struggling to walk 😪 I have horrific joint muscles pain shake weakness I have pin needle type pain in my legs all over my body I am struggling to walk to toilet been stuck in bed for weeks i also have pots mast cell activation syndrome . Just these symptoms seem to got worse since I have started my course of folate and vitamin d anyone else so poorly of these tablets my b12 seems to be in 378 so that OK isn't it .

[Technoid]

A 378 serum B12 is in the normal range. If you need a diagnosis "on the books", there are other things that can be tested although some might need private testing. These would be Active B12, MMA and Homocysteine. If you are impatient to be well you can also consider B12 injections, either trialing one from a salon or self-injection. But if you do go down the self-treatment route you are on your own as far as the medical profession is concerned and it will become very difficult (or impossible) to get a clear diagnosis as B12 will most likely be highly elevated after injections. It's a difficult decision either way but many here can and will help you through the journey.

A B12 deficiency should be treated before correcting folate. It is possible to have B12 deficiency, even severe deficiency, with normal serum results.

[Merkat90 in reply to Technoid]

Here are my readings .

[Merkat90 in reply to Technoid]

B12/folate levelSerum vitamin B12 level 378 ng/L [190.0 - 910.0]

Serum folate level 2.1 ng/mL [3.3 - 99999.0]; Below low reference limit I am in the UK

[Merkat90]

I feel worser since I started the folate at 12 tablets a day 400 microgram as I have reacted to all other folic acid tablets .

[Technoid in reply to Merkat90]

You need to get your folate up no doubt but I would focus on making sure you have sufficient B12. Neurological damage from B12 deficiency would not be corrected by folate. It is very important to make sure that B12 is being fully corrected before going near folate. IMHO B12 is no.1, folate can be corrected once the B12 is being resolved.

Folate and B12 operate in processes that rely integrally on each other and shouldn't be looked at in isolation.

[Technoid in reply to Technoid]

Perhaps I misread but I now see your 378 serum B12 result. That is certainly within normal range but does not absolutely preclude deficiency.

[Sleepybunny in reply to Technoid]

I agree Technoid.

I had severe neurological symptoms with serum b12 as high as 500 ng/L.

Blog post about being symptomatic for B12 deficiency with a normal range serum B12 result.

b12deficiency.info/your-ser...

[Merkat90]

Thank you for your reply I wondering if the low folate is causing the leg walking issues

[Litatamon in reply to Merkat90]

Is a gait issue? Any foot drops? Needing to say right/left/right in your head (cognitive component). All this even with no atrophy?

Or is it weakness due to atrophy occurring?

[B12life]

I’ll tell you I had symptoms at 400s and 500s but the docs considered that normal so they let it get to 190 and it was an horrible experience. It would be good it you could get a neurologist to give you b12 injections. I had good luck with those.

[Sleepybunny]

Hi,

I've read that in a person with both B12 deficiency and folate deficiency that B12 treatment should be started first.

Treating a folate deficiency without treating a co-existing B12 deficiency may lead to neurological problems.

UK guidance on treating B12 deficiency suggests that people who are symptomatic for B12 deficiency should be treated even if serum B12 is within normal range.

Summary of BSH Cobalamin and Folate Guidelines ( a UK document)

pernicious-anaemia-society....

Includes the statement...

"in the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment"

Are your symptoms consistent with B12 deficiency?

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

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

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

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...

If PA is a possibility, worth joining and talking to PAS who can offer support and pass on useful info.

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.

Testing for PA

pernicious-anaemia-society....

I've also read that a pepsinogen test may be useful in helping to diagnose PA.

It's possible to have Antibody Negative PA but some doctors may not be aware of this.

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

Coeliac disease

Have you been tested for coeliac disease?

NICE guidelines for Coeliac disease indicate that anyone with unexplained B12, folate or iron deficiency should be tested for coeliac disease.

nice.org.uk/guidance/ng20

More info on Coeliac UK website

coeliac.org.uk/home/

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'm not medically trained, just someone who suffered for years with unrecognised and untreated B12 deficiency.