Folate defiency

[Swhia123]

Hi My folate level is below 2, been on folic acid for 20 days had some reaction so dr advised to come off meds.Feel dreadful no energy, pins & needles nausea , bloating ,stomach ache

[Technoid]

Was your B12 tested?

And/Or MMA/Homocysteine.

There are other folates to consider if folic acid is causing issues. But whether B12 is involved should be addressed first.

[Swhia123 in reply to Technoid]

Yes b12 was checked 173, but I have my suspicion that b12 is the problem.Thankyou for reponding

[PlatypusProfit8077 in reply to Swhia123]

Is your B12 being treated?? I felt so awful at 172

[Technoid in reply to Swhia123]

A b12 of 173 is quite low, Is there a reason this is being ignored and not treated? It sounds like you may have neurologic involvement so frequent injections may be required. Is the cause for the low B12 being investigated and if not why?

If you're considering self-treatment with tablets or injections, please be warned that this should not be done prior to getting tested for PA (depending on the type of tests used, they may skew the results), resulting in difficulty getting a diagnosis.

[Swhia123 in reply to Technoid]

Thankyou so much for advice

[Swhia123]

No it isn't

[Sleepybunny]

Hi,

Welcome to the forum.

I'm not medically trained.

In UK, guidance on treating someone with both B12 deficiency and folate deficiency suggests that B12 treatment should be started first.

My understanding is that treating folate deficiency without treating a co-existing B12 deficiency might lead to neurological problems.

B12 websites

1) Pernicious Anaemia Society

Charity based in Wales, UK. Has overseas members.

PAS membership is separate to membership of this forum.

pernicious-anaemia-society....

PAS have support groups in UK, USA, Sweden and Australia - New Zealand.

pernicious-anaemia-society....

PAS website has lots of useful leaflets.

pernicious-anaemia-society....

2) B12info.com

b12info.com/

Run by a UK campaigner on B12 deficiency issues.

Lots of useful info.

3) B12d.org

UK charity.

Organises interesting online talks about B12 deficiency.

b12d.org/event/

4) The B12 Society

UK charity

theb12society.com/

5) B12 Awareness (US website)

Set up by Sally Pacholok, US campaigner on B12 deficiency issues.

b12awareness.org/

6) Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/english/

Two B12 books I found useful

Published some years ago so some bits might need updating.

1) "What you need to know about Pernicious Anaemia and vitamin B12 deficiency"

by Martyn Hooper

Martyn Hooper was the former chair of Pernicious Anaemia Society.

2) Could it Be B12?

by Sally Pacholok and J.J. Stuart

Are you in UK?

If you are in UK, there's a lot of other information I can pass on.

[Swhia123 in reply to Sleepybunny]

Thankyou so much for all the useful information

[Bellabab in reply to Sleepybunny]

Perfectly OK to treat folate deficiency before B12 deficiency. The reason its suggested otherwise is only when B12 deficiency has not been diagnosed and thats because supplementing folate then may mask the B12 deficiency.

[scnuke]

What dose of folic acid were you taking? Some people are very sensitive to high doses of folic acid. I had severe GI problems with 5 mg dose. I now take 400 mcg daily with my hydroxycobalimin injections, twice daily. There are also other forms of folate that can work well for a small percentage of people. It's a real trial and error to find the right doses and injection frequency of B12 if you need to go that route. Best of luck to you.

[Swhia123]

400mcg but felt dreadful after taking themThankyou

[bookish in reply to Swhia123]

That is a very low dose to be prescribed with such low folate. But I'd agree that the B12 needs attention first/as well. You may do better with methylfolate or folinic acid than folic.

[Sleepybunny]

It's helpful to know which country you are in so that forum members can post relevant info.

Countries can vary in their diagnostic/treatment protocols for B12 deficiency. Sometimes the type of B12 used in treatment can vary.

Might be worth you searching online for national/regional guidelines on treatment/diagnosis of B12 deficiency for your country.

If you're in Europe, this links mentions some European B12 support groups/websites

b12info.com/very-useful-links/

PAS (Pernicious Anaemia Society) accepts members from across the world.

pernicious-anaemia-society....

pernicious-anaemia-society....

You do not need a diagnosis of pernicious anaemia to join PAS.

Symptoms Lists

Do your symptoms suggest B12 deficiency is likely?

I used PAS checklist below and added extra symptoms at bottom of page.

pernicious-anaemia-society....

See other lists below.

b12info.com/signs-and-sympt...

theb12society.com/signs-and...

b12awareness.org/cobalamin-...

There is overlap between the symptoms of B12 deficiency and the symptoms of folate deficiency.

Causes and Risk Factors for B12 deficiency

b12info.com/causes/

theb12society.com/causes-an...

Has your doctor discussed your diet with you?

If B12 deficiency and folate deficiency are not due to diet then I would expect doctors to at least test for pernicious anaemia and coeliac disease. Both are autoimmune conditions that can lead to B12 deficiency.

Has your doctor ruled out the possibility of an internal parasite eg fish tapeworm infection.

Some parasites can lead to low levels of folate and/or B12.

One clue that a parasite might be present is an increase in eosinophils, a type of white blood cell. A full blood count (also known as complete blood count) should have a result for eosinophils.

Has your doctor looked at any medications you are on? Some medications/drugs have been associated with low folate and/or low B12.