Still getting my head round this

[SharonH68]

Not sure what my IF test results mean? I was diagnosed B12 deficient last summer, had loading doses, then 12 weeks, then 10 and GP finally agreed to every 8 weeks otherwise I’m on the floor and can barely remember my own name. My test results have just come back, I haven’t discussed with my GP yet but have been told everything is normal and in range. Are they that accurate ? I was told I was only just below normal with B12 at 176 but as the injections have such a dramatic effect and make me feel so much better I’m not convinced.

[Gambit62 Administrator]

difficult not to scream at the reference to 'everything being normal'

Both your test results have come back negative - but as IFA gives false negatives about 50% of the time that doesn't rule PA out as a cause.

serum B12 levels are not useful as a guide to treatment after loading shots.

As a dignosis test it will also miss 25% of people who are B12 deficient if it is used as a single measure - people vary a lot in the levels of B12 they actually need so 176 would be okay for the majority of people but extremely low for others ... and some people will be fine with levels that are lower than the normal range - it is only an indicator - it isn't the whole story.

[Ellen-C in reply to Gambit62]

you need a methylmelonic acid test (MMA) and homocysteine test to find the true accuracy of your B12. B12 blood tests can be highly inaccurate and not show the true extent. You need to go by your symptoms BUT you can take sublingual B12 3000 mcg daily or liquid solution or B12 patches 1200 mcg a day you can buy online, and use those AS WELL as your B12 shots. You can't overdose on B12, you will always pee out excess but sounds like you are sooooooooooo low still you would be a long time before even in normal range. A lot of people supplement their B12 in between their shots. Also folate tablets (not folic acid but folate) helps B12 absorb, so try doing that as well. Apparently you need folate tablets when taking in B12 to help it properly absorb. Also watch Sally Pacholok's video (or movie) on youtube and get her book Could it Be B12? available from Amazon as well. Your doc should use his noggin and be more informed though, that book as a "gift" might help inform him. Also get a copy for your family members... B12 deficiency is often genetic and runs in families.

[Gambit62 Administrator in reply to Ellen-C]

MMA and homocysteine may not be useful tests post loading doses

the best form of folate is from food but if you have an absorption problem affecting B12 absorption then that may also affect your ability to absorb the folate - but this would be clear from a folate deficiency or low levels just before you started loading shots and is more of a risk when starting B12 treatment as this is a period when your need for folate will increase as processes that need both B12 and folate start to run again.

Folate does't affect the absorption of B12 - just that you need both folate and B12 to run some processes so if you don't have enough folate those processes don't run properly.

Excess will only be lost in pee if the body is capable of removing it faster than you put it in. Bit irrelevant on one level though as B12 in itself isn't toxic so high levels in blood aren't a problem if you are on shots. Raising B12 levels can cause problems but this is going to have happened as a result of having a B12 shot - so caution applies to supplementing with high dose supplements when it isn't clear that you have a B12 absorption problem.

You can't get tablets for 'folate' rather than folic acid - folic acid is one of the artificial forms of folate that is available - there are other forms and some people may benefit from taking a methylated form - but others don't and some have bad experiences with these forms.

[SharonH68 in reply to Gambit62]

When I had the original blood test although my GP didn’t point it out at the time my folate was borderline so guess I need to eat more leafy greens or supplement as well.

[fbirder]

The IFA test came back negative. Which doesn't mean much.

The GPCA test also came back negative. Which means you probably don't have PA. you need to get your doctor to investigate other possible causes of your deficiency.

[Sleepybunny]

Hi,

"Not sure what my IF test results mean"

Your IFA results appear to be within normal range 2.8iu/ml (0 - 6.1).

in UK, BSH Cobalamin and Folate Guidelines acknowledge the possibility of Antibody Negative Pernicious Anaemia, this is PA where IFA antibody levels are negative or within normal range. I'm not sure if Antibody Negative PA is recognised in other countries though.

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart above mentions when PA and Antibody Negative PA can be diagnosed in UK.

The book ""What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper mentions Antibody Negative PA.

There are many possible causes of B12 deficiency besides PA. Do any of these seem possible?

Risk factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

I am not medically trained.

[Ellen-C in reply to Sleepybunny]

IF is intrinsic factor. If you are missing it it means your gut can not absorb B12 so you eventually become deficient and if left too long you get into the pernicious anemia stage which is the rock bottom stage of B12 deficiency.