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I am new here and undiagnosed B12 deficiency

HypoF3XXY profile image
3 Replies

Hello everyone,

I am very newly diagnosed Hypo but have just had my results given to me and some are very low or below range and it was suggested to get some advise from your group as my :

Vit B12 178 ( 197.0 - 771.0)

Folate 7.4 ( <3 suggests deficiency)

Ferritin 18 ( 13 - 150)

any advise on what I should do next or ask my doctor, would be appreciated ( my next doc appointment is end of the month.

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HypoF3XXY
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taka profile image
takaAdministrator

Hi HypoF3XXY Welcome! :-)

Unfortunately you are deficient in B12 and you will need to treatment asap. I imagine it is making you feel pretty bad. :-( It is important you don't supplement with anything containing B12 for now in case your GP wishes to do more tests (which can be unhelpfully skewed by supplementing).

There are many reasons for a deficiency ranging from pernicious anaemia, crohn's, coeliac, stomach or ilium surgery or disorders, some kinds of medication, tapeworm or something as simple as eating a diet lacking in B12. B12 is found in animal products so vegans (and veggies who do not eat enough dairy/egg as sources of B12) can be deficient. Treatment is via injections (for life) unless there is a dietary deficiency or similar reversible cause.

PAS symptom list: pernicious-anaemia-society....

B12 deficiency symptom list: b12deficiency.info/signs-an...

Your GP should also test you anti-intrinsic factor antibodies to see if you have pernicious anaemia, which is a leading cause of B12 deficiency. This test is not perfect however. It is very specific (ie if you test positive you pretty much have PA) but is not very sensitive as it misses 40-60% of those with PA! Your B12 injections (hydroxocobalamin) should commence without delay even if your anti-IF antibody results are not yet back. The treatment whether you have PA, antibody negative PA or a B12 deficiency is the same - injections.

For the UK - BSH guidelines for treating B12 and folate deficiency: pernicious-anaemia-society....

No neurological symptoms: an injection every 2nd day for 2 weeks then injections every 3 months

With neurological symptoms: an injection every 2nd day for until no further improvement (reviewed at 3 weeks) then injections every 2 months

The pinned posts on the left (or at the very bottom if on a phone) have many helpful links for more information especially this one: healthunlocked.com/pasoc/po...

You should ask your GP about your ferritin levels too. Ferritin is an iron storage protein so your result indicates your iron levels may be pretty low - right near the bottom of the range. Have you had an iron panel done to see what your iron levels are like? Low iron can also make you feel pretty bad too and the symptoms also have a lot of overlap with those of hypothroidism and B12 deficiency so it may be hard to know which is causing what symptom. Your GP may want you to take iron tablets to raise your levels a bit more - best done under medical supervision as too much iron can also be harmful.

Good luck.

HypoF3XXY profile image
HypoF3XXY in reply to taka

Thank you for your time, I am a life long vegetarian so hopefully this could be down to that

taka profile image
takaAdministrator in reply to HypoF3XXY

It may or may not be! I think vegetarians have lower (but normal) levels of B12 as a group but as long as they eat enough dairy and / or eggs they should not become deficient. I've been vegetarian for 30 odd years and was diagnosed with PA a little over a year ago so it is very possible for it to have nothing whatsoever to do with being veggie.

Forgot to say but hypothyroidism (especially if it is autoimmune in origin) is associated with an increased risk of developing other autoimmune conditions one of which is pernicious anaemia.

Whatever the cause you need injections as soon as you can as your levels are so low. Maybe see if you can see your GP sooner than the end of the month?

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