Active b12 result: Hello, so gp did my... - Pernicious Anaemi...

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Active b12 result

Hullaballop profile image
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Hello, so gp did my serum b12 which was 206 a few weeks ago and said he wasn't worried. I am worried because I have lots of symptoms and had a b12 deficiency a few years ago so I paid to get an active b12 test done privately (UK). Result is 47 pmol/mol. It says the cut off for a deficiency is 38, so does this mean I definitely don't have a vitamin b12 deficiency? I am not anaemic but i do have an iron deficiency which was 22 a few weeks ago, I've been given iron tablets to take every day which I've been taking for 2 weeks and iron has gone up to 54. Folate is 8.0.

Anyone able to offer any insight on these figures as I'm not getting very far with Google.

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Hullaballop
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Wwwdot profile image
Wwwdot

Hi Hullaballop

I am sorry to hear that yet again you are not getting help which you clearly need.

Are you able to take B12 orally? The threshold for B12 injections with symptoms is 200 (sorry can’t recall units) and you are 206. My hubby was 201 and was refused treatment. He has started self injecting after a private consultation and the difference is amazing.

So my advice is go back to the GP and ask for a B12 and vitamin D and even though active B12 is above the threshold the point is you have symptoms. Remind the GP the cost of B12 is cheap and you can’t overdose the consequences of long term and potentially permanent damage due to B12 deficiency is costly.

If still no joy consider a high dose oral sublingual B12 or self injections.

I wish you all the best.

🤗🤗🤗🤗🤗

Nackapan profile image
Nackapan

You know your symptoms.You can be b12 deficient with 'inrange ' results.

Look at the PAS website

And all the links posted on here.

Symptoms overlap with many things .

The Gp should eliminate other possible causes .

Blood tests have measurements abd ranges on the right in brackets

Often Gps lack of knowledge in b12 needs you to get a copy of your results.

Compare with an old test.

B12 deficiency needs life long treatment if not diet related .

Folate shouive been tested too ,usually done with b12.

Sleepybunny profile image
Sleepybunny

Hi,

It's possible to have severe B12 deficiency symptoms with an in range serum (total) B12 result. I speak from personal experience.

Blog post about being symptomatic for B12 deficiency with an in range serum B12 result.

b12deficiency.info/your-ser...

It's possible to be symptomatic with normal range Active B12 (holotranscobalamin), normal range homocysteine, normal range MMA.

This diagnostic flowchart from a UK document mentions that doctors should consider continuing B12 treatment in patients whose results in Active B12, MMA, Homocysteine are normal range if their symptoms have improved.

stichtingb12tekort.nl/engli...

How to write letters to GP about B12 deficiency

b12deficiency.info/writing-...

NICE CKS (Clinical Knowledge Summary) B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

NICE are developing new B12 deficiency guidelines to be published in 2024.

nice.org.uk/guidance/GID-NG...

nice.org.uk/guidance/indeve...

Summary in next link includes the statement

"In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment"

The quote above might be a good one to put into a letter to GP.

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

Link to thread about Patient Safety, has useful links for those in UK having difficult health experiences.

healthunlocked.com/pasoc/po...

If you have the symptoms of B12 deficiency, fight to get treatment.

I fought hard to get treatment from NHS but was refused on several occasions. In the end I was forced to treat myself.

Many UK forum members here turn to treating themselves if NHS treatment is not enough.

Some get extra B12 injections from private GPs, some get them from beauty salons, some try high dose oral B12 but this doesn't work for some people and some as a last resort try self injection.

I'm not a health professional.

There may be other useful info in pinned posts on this forum.

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