Hi, I really need some help. I’ve been diagnosed with autoimmune gastritis with or without pernicious anaemia (no tests run yet). I had a folate deficiency and was given folic acid in December. I became quite unwell with neurological symptoms. I did research and started taking a B complex, this made me feel a lot better. I told the GP, they didn’t seem bothered.
Am I right in thinking that with autoimmune gastritis including neurological symptoms I should have been offered B12 injections? My B12 serum was 459 but I’m aware this is not a reliable marker for B12 deficiency. I also have ceoliac disease. I have been looking into self medicating with injections but if drs should be offering it, then I could go to them?
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FeralForestWitch
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Yes , Autoimmune Gastritis is another name for Pernicious Anaemia . NICE ( National Institute for Health and Care Excellence .have given P.A. this new name . They are now calling Pernicious Anaemia Autoimmune Gastritis . Ask your doctor if he/ she has read the latest guidance on B12 deficiency , published in March 2024 . , where treatment for the condition is explained . You need b12 injections FOR LIFE for this autoimmune condition.
Come back here , if don’t get this treatment , for further help .
PAS have support groups in UK and other countries. I think non members can attend some meetings but check with PAS. Can be good places to swap info and experiences.
"I had a folate deficiency and was given folic acid in December. I became quite unwell with neurological symptoms"
When you were given folic acid, what was your serum (total) B12 level and ferritin level (also any other iron tests)?
B12 deficiency can lead to red blood cells that are larger than normal (macrocytosis)
Folate deficiency can lead to red blood cells that are larger than normal (macrocytosis).
Iron deficiency can lead to red blood cells that are smaller than normal (microcytosis).
If a person has both B12 deficiency and folate deficiency then giving them only folic acid means normal sized red blood cells will be produced but neurological effects from B12 deficiency may continue to develop.
Things get more complicated if a person has all three deficiencies...folate, B12 and iron.
The effects of iron deficiency can mask the effects of B12 and folate deficiencies on red blood cells.
It's possible to have severe B12 deficiency symptoms with normal range serum (total) B12.
You might want to look up "functional B12 deficiency" if you have the time and energy.
MMA, homocysteine and Active B12 tests can help to diagnose functional B12 deficiency.
These UK health documents may be worth searching for and reading.
1) "NICE B12 deficiency guideline" - published 2024 (mentions AIG).
3) Try to find the B12 deficiency guidelines used by your ICB (Integrated Care Board) in England. Health Boards in Wales/Scotland.
If you can't find them online, best bet is probably to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines they use and for a link to or copy of them. Compare them with NICE documents.
I left some very detailed replies on these threads eg books to read, symptoms of B12 deficiency, causes, links to help those struggling to get diagnosis/adequate treatment etc.
When you were given folic acid, what was your serum (total) B12 level and ferritin level (also any other iron tests)?
B12 - 459
Ferritin - 36
Folate - 2.3
Just had bloods done again and ferritin has risen to 45. Full blood count is looking a lot better since taking a B complex. I requested a TIBC test to be done, not had results of that yet. I also have hypothyroidism.
Really appreciate your help! I had some horrible symptoms, loss of taste/smell, sense of touch/vibration went, headaches, muscle weakness, felt dizzy and unstable, always tired, and very cold.
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