folate and b12 : hi all, after having... - Pernicious Anaemi...

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folate and b12

Confused1806 profile image
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hi all, after having bloods done im yet again low on folate.

Folate: 2.2ug/l (2.7-34 normal range)

B12: 310ng/l (180-914 normal range)

My assumption is my gp will put me back on supplements for folate my question being do i need to take b12 also? And as folate and b12 are related could this deficiency cause hair loss?

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Confused1806
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Tarheel55 profile image
Tarheel55

Ask your provider to check your bloodwork with the test that checks to see if you have pernicious anemia if you have not already. If you have no intrinsic factor, then you will not absorb any B-12 supplements, my Dr said. They kept discussing all of my bloodwork until I insisted on the test, and found out I had it. I now do weekly-10 day shots to keep my levels in the 500's-600's. My hair has grown back and I have the energy to perform my work and responsibilities. I have no doubt you do not feel well in the 300's. I begin to feel unwell below 500 and my hair loss begins again along with fatigue and some depression as a result. Be your own advocate, and insist on testing for yourself. Best of luck!

Confused1806 profile image
Confused1806 in reply to Tarheel55

Heres where the confusion comes for me i have tested positive for gastro parietal cells but negative for intrinsic factor so im at a loss what tests to push for next and my gp seem to not be alarmed by the parietal cells! I have read online that the intrinsic factor test is not massively reliable but not sure what else is tested for PA. Yep my list of issues with regards to fatigue and feeling generally like crap go on and on and now the low folate im worrying they are over looking something. Glad you got an answer.

Sleepybunny profile image
Sleepybunny

Hi,

From personal experience, B12 deficiency can lead to hair loss.

If your symptoms suggest B12 deficiency then I think your GP should consider B12 treatment even if serum B12 is within normal range.

I had over 50 typical symptoms including dementia type symptoms, spinal symptoms and other neuro problems with most serum B12 results from 300 - 500 ng/L.

Blog post about being symptomatic for B12 with normal range serum B12

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

It's possible to develop severe neurological damage from B12 deficiency with normal range serum B12 in some cases.

If you search online for "Turner functional B12 deficiency SACD", this should show a case study where a patient with normal range serum B12 developed spinal cord damage from B12 deficiency. Might be worth showing this to GP.

There are other relevant quotes if you look at Point 5 in letter writing link further down page.

"My assumption is my gp will put me back on supplements for folate my question being do i need to take b12 also"

There is a potential issue if a person with both B12 deficiency and folate deficiency only receives treatment for the folate deficiency. It's possible that neurological symptoms might develop.

B12 deficiency and folate deficiency can both lead to red blood cells that are larger than normal (macrocytosis). Giving just folic acid for the folate deficiency may mean that normal sized red blood cells are produced but the neurological effects of B12 deficiency could continue.

See Cautions section in BNF entry for folic acid

bnf.nice.org.uk/drugs/folic...

"so im at a loss what tests to push for next"

Have you had a gastrin test?

labtestsonline.org.uk/tests...

Testing for PA

pernicious-anaemia-society....

Thread about tests for PA/B12 deficiency

(Mentions a few other possible tests that could help diagnose PA)

healthunlocked.com/pasoc/po...

Have you considered writing a letter to GP outlining your concerns?

How to write letters to GP about B12 deficiency

b12info.com/writing-to-your...

Maybe you could point out that IFA test is negative in about 50% of people with PA.

This is discussed in Background Information section in this UK document "NICE CKS Anaemia - B12 and Folate deficiency"

PAS summary of above NICE CKS document.

pernicious-anaemia-society....

I suggest you search online for and read the whole document, not just the summary.

This diagnostic flowchart from BSH Cobalamin and Folate guidelines mentions Antibody Negative PA. Maybe you could show this to GP and ask if it's possible you could have Antibody Negative PA.

stichtingb12tekort.nl/engli...

If you have the time and energy, you could read the whole BSH Cobalamin and Folate guidelines document, it should have some useful quotes.

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

Have you talked to PAS (Pernicious Anaemia Society)?

PAS membership is separate to membership of this forum.

You can join PAS without having a PA diagnosis.

pernicious-anaemia-society....

PAS members can ring a helpline.

pernicious-anaemia-society....

They may be able to point you to info that answers your questions.

Article about Intrinsic factor and Pernicious Anaemia

stichtingb12tekort.nl/engli...

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

healthunlocked.com/pasoc/po...

Some UK forum members turn to treating themselves if NHS treatment is not enough. In my case, several requests for B12 treatment were refused and I had no option left other than treating myself.

Some get extra B12 injections from private GPs, some try high dose oral B12 (1000mcg or higher) but this doesn't work for some people. Some as a last resort turn to self injection when they feel they have no other option. There is a pinned post that mentions SI.

People who treat themselves without having a confirmed diagnosis of B12 deficiency may find it very difficult to ever get a diagnosis.

I'm not medically trained.

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