Can Anyone Please Advise On B12 Related Tests To Have If Normal B12 Testing is in range.

[thyreoidea]

Can Anyone Please Advise On B12 related tests to have If Normal B12 Testing is in range.

My daughter is having numerous issues including IBS which she had for nearly 20 years and the last 18 months undiagnosed urology issues, mostly infections that often come back as no issues and has been on numerous different antibiotics and all her GP is testing for is the normal B12 test. Her folate has come back below 3 but the GP has not contacted her yet.

I think there are other tests to see if the B12 in her blood is being utilised but not sure what they are.

I have autoimmune Hypothyroidism along with a serious auto immune blood disorder and it is a good chance my daughter has inherited autoimmune issues.

The only results so far taken last week apart from FBC which came back all in range.

Folate 2.9 >3 was 3.8 in August 2023

B12 537 ng/l (200 - 771)

Ferritin 40 ug/l (13 - 150)

Thank you in advance for any replies.

[Sleepybunny]

Hi,

I wrote another reply but managed to delete it.

What to do next if B12 deficiency suspected

b12info.com/what-to-do-next/

Have you considered joining PAS?

You do not need a PA diagnosis to join.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Testing for PA

pernicious-anaemia-society....

Thread about tests for PA/B12 Deficiency

healthunlocked.com/pasoc/po...

Search online for this UK document "NICE CKS Anaemia - B12 and Folate deficiency" and read it thoroughly including the section on Background Information.

Try to find local B12 deficiency guideline used by ICB (Integrated Care Board) in England or Health Board in Wales/Scotland and compare it to NICE CKS document.

[Sleepybunny in reply to Sleepybunny]

"Her folate has come back below 3"

It's important that in a person with both folate and B12 deficiencies, the B12 treatment is started first. Treating folate deficiency without treating a co-existing B12 deficiency may lead to neurological problems.

See Cautions section in link below about Folic acid.

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

Has she been tested for coeliac disease?

It can lead to B12, folate and iron deficiencies.

Diagnosis of Coeliac disease

coeliac.org.uk/information-...

Search online for "NICE guideline Coeliac disease".

[Sleepybunny in reply to Sleepybunny]

Unhappy with treatment?

How to write letters to GPs about B12 deficiency

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

Thread about Patient Safety, has links that might be useful for those having difficult experiences with B12 deficiency.

healthunlocked.com/pasoc/po...

Two useful B12 books

Both published a few years ago so some bits may need updating.

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

Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).

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

Very comprehensive with lots of case studies.

I learnt a lot from spending time reading other people's forum threads.

[thyreoidea in reply to Sleepybunny]

Thank you for the useful information, I have added the latest results and ranges to my original post. Is it likely the NHS will carry out MMA (Methylmalonic acid) and Homocysteine (tHCY) tests?

Is there a check list of possible symptoms for B12 deficiency by any chance that can be ticked off and presented to her GP.

[Ab197 in reply to thyreoidea]

I asked my GP to do MMA after I was advised by medichecks GP (paid for private blood test) to check MMA due to B12 active test on the low side. The request was refused due to her telling me she didn't have access to it. I've had to order it through medichecks. Worth asking though you might be lucky.

[Mixteca]

Ferritin's also very low, so I'd get a full iron panel done to get an overall picture.