I’m unsure if I have a b12 deficiency? - Pernicious Anaemi...

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I’m unsure if I have a b12 deficiency?

Emmy1991 profile image
4 Replies

So for 8 years now my b12/folate has come back low ( e.g - b12 183 and folate 2.2 was my last one last September and it has been them sort of levels for quite a few years.

I’ve had another blood test recently and my levels have gone up folate 6.5 and b12 217 (which I know is still low but I just can’t believe it as I have not been supplementing). So does this mean I don’t have a b12 deficiency after all these years and I don’t have problems absorbing? I had a episode a few years ago (2016) where my b12 level was 198 and folate 2.91 and my MCV was high so I was put on injections straight away but was taken off them a year later because “my levels were up” but have declined over the years until now

Would iron tabs affect the result?? as I am on them right now as my iron serum come back low which is due to my heavy periods. I was so convinced as I had all the symptoms like last time.

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4 Replies
Sleepybunny profile image
Sleepybunny

Hi,

There is UK guidance that suggests that people who are symptomatic for B12 deficiency should be treated even if serum B12 is within normal range.

Maybe this flowchart would be worth passing to your GP.

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

and this summary which 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....

Blog post about being symptomatic for B12 deficiency with normal range serum B12

b12deficiency.info/your-ser...

Do you have the symptoms?

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

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

b12-institute.nl/en/symptom... (B12 Institute Netherlands)

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Do you have any of these risk factors for B12 deficiency?

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Next link about causes is from a Dutch B12 website

b12-institute.nl/en/causes-...

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

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

NICE (National Institute for Health and Care Excellence) is developing new guidelines for B12 deficiency in UK.

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

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

They want people to comment on them. There are threads about this on the forum.

Unhappy with Treatment (UK info)?

How to write letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

See Point 5 in above link.

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, please talk to the GP and fight to get treatment. I had many typical symptoms but all but one of my serum B12 results were normal range. I developed spinal symptoms and dementia symptoms and poor mental health before I was forty.

I had one result serum B12 result that was well below the range but GPs refused to treat me despite over 50 typical B12 deficiency symptoms, including many neurological problems.

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

If I hadn't treated myself, I suspect that by now 20 years later I would be sitting in a care home with permanent dementia and permanent spinal damage.

It's vital to get adequate treatment.

Inadequate treatment increases the risk of permanent neuro damage. In severe cases the spinal cord may be damaged.

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

I left other info on your previous threads which might be useful.

I'm not a health professional.

Sleepybunny profile image
Sleepybunny in reply to Sleepybunny

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

Gambit62 profile image
Gambit62Administrator

Serum B12is only accurate to20% - that means that if you repeated the test several times on the same sample then the results would vary by 20%. The two recent results you quote are within 20%of each other. As they were a year apart that suggest that your levles are actually constant and would indicate that you don't have an absorption problem, just that the point in range that is right for you seems to be around 200 ...

However, life gets a bit more complicated if you have had an injection in the past - theory would be that the effect of the injection on serum levels clears in a few months on average but there is a lot of variation from individual to individual.

The big question though is are you symptomatic? as the difficulties interpreting serum B12 results mean that evaluating symptoms is extremely important.

Folate is much more responsive to dietary in take.

supplementing iron should affect the results of serum B12 and folate.

Hectorsmum2 profile image
Hectorsmum2

If you have been low in the past and on injections they should not have been stopped regardless of levels in a blood test.

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