Anaemia Confusion: Having been... - Pernicious Anaemi...

Pernicious Anaemia Society

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Anaemia Confusion

GGourmet profile image

Having been diagnosed with B12 deficiency last December because of low serum B12 and neurological damage, my tiredness, etc was resolved with B12 supplementation (injections and daily sublingual). I felt much better.

After complications developed suggesting Crohns or SIBO, my gastroenterologist did further tests and Folate had dropped almost to the bottom of the range. This was resolved with Folic Acid supplementation.

Crohns and SIBO now dismissed and non specific B12 deficiency diagnosed.

I keep with the 2 monthly injections and daily oral.

Tiredness has again crept in.

Following an incident in London on 1st September, I was admitted to St Thomas's and referred by my gastroenterologist to a cardiologist.

Further tests done. My heart is in fantastic order and Vasovagal episode confirmed with unknown cause.

Now my free Iron levels are below normal.

Any ideas what the heck is going on?

Iron 11.3 micromol/litre range 10.6-28.3

TIBC 68 micromol/litre range 41-77

Transferrin Saturation 17% range 20-55 male

Ferritin 162 microgrammes/litre range 30-400

B12 levels are high normal, as too are Follate. Not tested on this occasion. I have a very healthy meat and fish rich diet, inc liver.

Although B12 serum levels were very low, I never showed signs of megaloblastic anaemia and now the numbers indicate iron deficiency anaemia but no other haematological measures show anaemia.

5 Replies

Were you tested for pernicious anaemia?

Low B12, folate and iron are likely to be the result of your body not absorbing nutrients very well. So if it not Crohn's or SIBO it could be PA , coeliac disease, or another malabsorption problem.

Great idea, but these were eliminated as possibilities last year. However, the gastroenterologist admits that the tests are unreliable and misdiagnosis was always a possibility. I also meant to say thanks for the ideas.

Gambit62 profile image

Have you tried upping the daily dose of B12 to see what that does - may be that the level you are taking at the moment isn't enough ... although it may also be that oral isn't a method that works for you?

Also, what form of B12 are you taking? if methyl then see if you can find some high dose cyano or hydroxo as methly doesn't work for everyone.

GGourmet profile image
GGourmet in reply to Gambit62

Do you think that will change the level of free iron? I currently take methyl (2000 microgrammes/day) to great effect on my eye sight and injections are hydroxycobalamin.

Gambit62 profile image
Gambit62Administrator in reply to GGourmet

I don't think supplementing B12 is going to affect an iron absorption problem. It could help correct macrocytic anaemia if you had that but if you had an iron based anaemia - microcytosis - it wouldn't help that.

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