Folate deficient but am I b12 deficient? - Pernicious Anaemi...

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Folate deficient but am I b12 deficient?

chloe2124 profile image
11 Replies

I have numbness in my foot so went to dr who did blood tests. Folate was 3.6 and b12 240. I'm on 5mg of folic acid but after 3 weeks of taking them I'm fatigued to the point it's an effort getting a shower, anxious, tearful and my feet are tingling. Can folate make b12 go down? Should I be on injections at 240? Thank you 

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chloe2124
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Secondchance profile image
Secondchance

Your B12 result is most likely 'within range' but on the low side. Every lab has different ranges. This does not exclude B12 deficiency along with folate deficiency. There is a risk of increasing neurological problems and rarely sub acute combined cord degeneration with folic acid supplementation when there is also B12 deficiency. Go back to your GP about these increasing symptoms as you may have increased use of B12- folate and B12 work together so the extra folic acid could have reduced your B12 further.

The guidelines are to treat even if within range if symptoms suggest B12 deficiency and NEQAS issued a warning that people with B12 deficiency may have 'normal' B12 levels. With neurological symptoms treatment is alternate day injections until no further improvement followed by 2 monthly maintenance (BCSH guidelines)

Gambit62 profile image
Gambit62Administrator in reply toSecondchance

There are also warnings against just treating a folate deficiency if there is a possible B12 deficiency.  Both need to be treated.

As the body needs folate in order to process and use B12 properly it may be the case that you went from being in a position where you weren't able to process B12 so the levels were lowish but steady to a position where you have been able to process the B12 you have but can't process anymore because you aren't absorbing any more.

chloe2124 profile image
chloe2124 in reply toSecondchance

Thank you both that's really useful, just hope she listens to me!

Sleepybunny profile image
Sleepybunny

Hi,

i've assumed you're in the UK.

Gambit mentioned warnings against treating a folate deficiency without treating a co-existing b12 deficiency. See Management section in next link for details.

patient.info/doctor/folate-...

Have you read the "BCSH Cobalamin and Folate guidelines"?

These came out in 2014 and discuss both folate and B12 deficiency. Some GPs may not have read these guidelines. I gave a copy of the BCSH Cobalamin document to my GPs along with a copy of Martyn hooper's latest book.  I read the whole document.

"Should I be on injections at 240?"

Recent UK documents/articles make it clear that people who are symptomatic for B12 deficiency should be treated even if their B12 blood levels are normal range.

Besides BCSH Cobalamin and Folate guidelines, other useful UK B12 articles include

1)ukneqas-haematinics.org.uk/...

2)bmj.com/content/349/bmj.g5226

Interesting summary points

Symptoms lists

b12deficiency.info/signs-an...

b12deficiency.info/what-to-...

pernicious-anaemia-society....

See Symptoms Checklist. I ticked all my symptoms and gave a copy of this to my GPs.

Useful books

"Could it be B12" by sally pacholok and JJ. stuart

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn is the chair of the PAS and has written several books about PA and B12 deficiency.

Useful B12 websites

pernicious-anaemia-society.... 01656 769 717

Lifetime  membership costs £20.

b12deficiency.info/

b12d.org

martynhooper.com/

Sleepybunny profile image
Sleepybunny in reply toSleepybunny

useful link if unhappy with treatment

b12deficiency.info/b12-writ...

chloe2124 profile image
chloe2124

Some of my blood from yesterday came back. Kidney/liver normal. They said bone profile is satisfactory (not normal like the others) but no action required. Is this further proof that my b12 is too low? A there a link between b12 and bones?

humanbean profile image
humanbean in reply tochloe2124

It suggests to me that some of the levels they test in a bone profile weren't within range but they were considered to be close enough by the doctors to be "good enough".

I'm a cynic and would want to see the results with the reference ranges myself. I'll decide whether my levels are satisfactory where I have the knowledge to do so, and I'll research as much as I can when results are a bit dubious.

chloe2124 profile image
chloe2124

Is there a link between b12 and bones - I'm wondering if this is more evidence to get them to give me the injections! 

chloe2124 profile image
chloe2124

Also (sorry for all the questions!) literally 20 mins after having a glass of milk, chicken etc my energy levels increase. Is b12 absorbed that quickly?

chloe2124 profile image
chloe2124

Just had new blood results back. Folate up to 24 but b12 down to 214. Is that a big drop in 3 weeks?

fbirder profile image
fbirder in reply tochloe2124

No, it may not even be a drop at all. One of the many problems with the current B12 assay is that it's not very consistent. There's an error of at about 10% on any measurement. So your 240 could be 216 - 264 and your 214 could be between 193 and 235.

Either is low enough to be treated, especially if accompanied by symptoms of B12 deficiency.

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