When to test?

[Bates2587]

I has a blood test form for my daughter to test her Mma, homocysteine, FBC and auto abs. I was told to do this is if she deteriorated before her next appointment. She has. If my daughter finished her loading injections on 22nd January and she hasn't had supplementation since is it too soon to get this test done. I worry that if I get this done too soon the consultant will be happy with the homocysteine and Mma results and discharge her from his clinic.

[Nackapan]

The most important thing is to get more b12 injections if your daughter is deteriorating. I persinally wouldnt have the b12 tested as not necessary when on injections and csn be used against you.

Report symptoms back and if good initial response say that. I had to fight for more 5 weeks after loading g doses . I went back on every other day until no further Improvenent.

Guidelines if neurological symptoms persist.

[Bates2587 in reply to Nackapan]

I hadn't noticed the sneaky little b12 vitamin bit in the middle. I did report back on a video call to the consultant that she had improved in her mood. I don't feel like the consultant knows enough about B12 deficiency even though he is a haemologist. My grandad has pernicious anemia, he has also had multiple heart attacks, my grandmother has Alzeimers and has type 2 diabetes and multiple strokes and is a vegetarian. but he wasn't interested in that and my b12 was 315 so he didn't want to listen to about it running in the family. I have and autoimmune disease (colitis) so I don't think it is too far fetched. Myself and my dad have rosacea too. My dad also had he's b12 tested in 2015 and it was 247 and he is on statins for cholesterol. He is breathless event hough he is a keen gym goer. He also fainted resently but they haven't fount a cause. My 5 year old has a b12 of 239. She has double vision that jumps she says I did ask if their optician if their optic nerves were OK and she said yes.

[fbirder]

6 weeks will not be enough for the B12 from injections to be cleared from the body. That means that B12 will be very high and it's likely that both MMA and hCys will be normal.

[Bates2587 in reply to fbirder]

OK I will sit on that bloods form then. I was aware the B12 test was bad to retest after but I wasn't sure on the homocysteine and Mma as I thought of them as early indicators so might elevate again soon after.

[jox1 in reply to fbirder]

How long do you think clearance would take- I think I remember Viapath notes suggesting 12 weeks....

[fbirder in reply to jox1]

That is the normal recommendation.

[Sleepybunny]

"hadn't noticed the sneaky little b12 vitamin bit in the middle"

Testing B12 during treatment (PAS article)

pernicious-anaemia-society....

Testing B12 during treatment (from Dutch B12 website - ref ranges and units of measurement may vary from those in UK)

stichtingb12tekort.nl/engli...

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency.

Article suggests ....

1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections

2) Many current tests eg serum b12, active B12, MMA, Homocysteine, are not totally effective as diagnostic tests for B12 deficiency.

3) Successful treatment should not be stopped

Should be some useful info in guidelines below.

BSH Cobalamin and Folate Guidelines

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

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

B12 Deficiency Info website

b12deficiency.info/

[jimmel196]

I had a similar situation where the doctor ordered a homocysteine level and a methylmelonic acid level well after my b12 injections began. Of coarse they were in normal range. Fortunately my intrinsic factor antibody test was positive for antibodies or they would have probably discontinued my b12 injections. Doctors seem to get the order of operations wrong, which supports their lack of knowledge about b12 deficiency and pernicious anemia. Good luck to you.