folate deficiency - strange aches - Pernicious Anaemi...

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folate deficiency - strange aches

jojoful profile image
3 Replies

Hi everyone,

I was recently told i have low folic acid and have been put on tablets for 4 months, i have been getting sore neck shoulders, collar bones and hands. Could this be to do with my low folate?

also does anyone think i should take vitamins along side my folic acid tablets?

thank you

Jojo

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jojoful
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jojoful profile image
jojoful

Also i'm a 28 year old woman

Sleepybunny profile image
Sleepybunny

Hi,

Are you also being treated for B12 deficiency?

I've read that it is vital to treat any co-existing b12 deficiency if having folate treatment.

B12 deficiency and folate deficiency can both lead to macrocytosis (enlarged red blood cells RBC).

Macrocytosis is one of the signs that doctors look for when diagnosing B12 deficiency although many people who are B12 deficient do not have macrocytosis.

Folate treatment in someone who has both deficiencies may mean that the RBC return to normal size range (no longer macrocytic) but the effects of B12 deficiency continue because the effect on RBC has been masked.

I just wondered if aches and pains may be due to another untreated deficiency?

Some on this forum have both folate and B12 deficiency and other deficiencies.

Have you had Vitamin D levels checked?

Link about folate treatment (aimed at health professionals)

patient.info/doctor/folate-...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Iron Studies

labtestsonline.org.uk/tests...

B12 websites (most mention folate deficiency/treatment

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

B12d.org holds support meetings near Durham, UK

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

B12 books I found useful (think they all mention folate deficiency)

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

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

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Link discusses B12 and folate deficiencies in detail.

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF

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

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

NICE CKS

cks.nice.org.uk/anaemia-b12...

I am not medically trained. More B12 info in pinned posts on this forum.

Annkapp profile image
Annkapp

If you have weak genes that don’t process B9 well then it is best to take the fully reduced form of B9 called methyltetrahydrofolate, or commonly shortened as methylfolate.

Folic acid, folinic acid and folate forms can cause side effects if you have genetic polymorphisms in the methylation pathway.

Folinic acid is near the end of the methylation pathway but even that causes side effects for me.

Also as a general rule you should take B9 with all the other B vitamins.

You didn’t say what dose you are taking. If it is a large dose you may need to start with less and gradually build up since you have been deficient for awhile.

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