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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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.
B12 in the blood has two forms, active B12 and inactive B12. The body cannot use inactive B12 so if most of your 459 ng/L is in the inactive form that might explain why you have symptoms consistent with B12 deficiency
Maybe nudge your GP to test for Active B12 (also called holotranscobalamin).
GP might say that they do not do that test so maybe
1) you could point out that "NICE guideline B12 deficiency" suggests that GPs test for Active B12.
NICE B12 deficiency guideline is a fairly recent publication so GP might not be that aware of it. Maybe have a few notes from it with you.
2) you could ask to be referred to a haematologist
PAS have a link to NICE B12 deficiency guideline in their leaflet section.
I've found your post very useful, I have to dash out now to a hospital appointment (pain management). I woul like to read your post again how can I save it please. thanks in advance
One option is to just leave your computer on and leave a browser tab open there. Or you can bookmark a page for future reference. There is a vertical . . . at the upper right hand corner of your screen. Click on it to see a menu and choose bookmark. Another option is to click on the url (web address of the page). It will turn blue. Right click on it and choose copy. Then paste that into somewhere (a file, or put it in an e-mail to yourself).
Here is another way to find it. Use any page from this group and click on "Posts". There will be a search box. I show it outlined in red in the picture. You could type your own user id RAjos131950 in that box. It will find all the posts you have made or commented on.
Posts page of Pernicious Anaemia Society with search box outlined in red.
Would you like me to post a list of helpful B12 info for GPs ?
Yes please. I have submitted an FOI to the local ICB asking for their B12 guidelines, it will be good to see what page they are working from.
I am taking ferrous fumarate, have been on iron supplements for 14 years now. I agree my levels could be better, GP will not consider an iron infusion though. I requested a full iron panel to be run via the GP but they said they don't have access to those tests. The best they could do was order a TIBC, just waiting for that to come back. I suspect the iron has been low because of absorption issues. I have joined the iron protocol group, Vit D protocol group and a few B12 groups on Facebook. They have taught me a lot. My thyroid result came back elevated, GP thinks it is ok. I am symptomatic however, so that's another thing I need to dispute. I am taking levothyroxine for that.
It is really hard to get a balance when you don't absorb things properly. It's like a game of roulette, never knowing if your meds will work.
Really grateful for your help and advice, thank you so much.
"I have submitted an FOI to the local ICB asking for their B12 guidelines"
I think it's a good idea to know what you're up against locally.
Some of these local guidelines have been posted on forum in past.
Search forum posts with terms "local guidelines" or "name of your ICB" and that should bring up relevant posts.
Some ICBs may still be using B12 deficiency guidelines from a few years ago when they were CCGs. Check dates at bottom of each document as it should say when published and when due for a review.
I think all local B12 deficiency guidelines are likely to be reviewed soon due to new NICE B12 deficiency guideline (published 2024).
I hope you are not in the area discussed in blog post below. Blog post was a few years ago but I think the ICB is still using the same algorithm
Search for "Wolffenbuttel B12 deficiency" to find other articles he's written, including one for Mayo Clinic in US and one for BMJ (British Medical Journal).
His most recent article is an overview of B12 deficiency treatment.
Search for "Wolffenbuttel 2024 overview B12 deficiency" to find it.
In my personal opinion he's one of the few doctors who understands B12 deficiency.
4) B12d.org have online talks about B12 deficiency.
"I requested a full iron panel to be run via the GP but they said they don't have access to those tests"
Maybe you could ask GP to refer you to a specialist who can order these eg
haematologist
gastro-enterologist
endocrinologist
GPs are likely to be reluctant as referrals are expensive so you'll need to make a good case.
Also check your ICBs guidelines on treatment/diagnosis of iron deficiency.
Might be worth considering having a full iron panel privately.
GP might not accept the results but if it shows something of interest, it might persuade them to refer you.
"My thyroid result came back elevated, GP thinks it is ok. I am symptomatic however, so that's another thing I need to dispute. I am taking levothyroxine for that."
Have you posted about this on Thyroid UK forum on HU?
I just had a 3 month bout with gastritis and what I suspect was a bleeding ulcer. Never did bother with a doctor. Very uncomfortable and kept near the toilet. Now it is gone. Went on an Oatmeal-Banana-Gentle Food- diet for a couple of months. Also suspected bad tap water. It had nothing to do with B12 as I was always taking a B12 supplement, before, during, and after the gastritis. Start your self remedy with the basics. Dave 85 year old.
It sounds like me. I do have pernicious anemia but drs thought I had MS when my symptoms started. A year later I was in a wheelchair and couldn’t stay awake. Got a new doctor thought I had pernicious anemia after two weeks of b12 shots I felt so much better and able to walk without assistance. Three years of my life wasted. Much better now with treatment for anemia but still have a bit of a problem with my left leg and fatigue. Nothing compared to what I had! Needless to say I was very angry about the misdiagnosis. I won’t recommend anything for you but I survive by taking 10000 mcg oral melt on tongue B12 a day. Everyone is different. Any medication thru my stomach is not beneficial. I have treated my stomach erosion with sucralate. Antacids don’t help only makes conditions worse. Hope you can find the key to your health issues.
I haven’t had any further tests or a referral. I also tested positive on a ANA test with centromere pattern. They think it’s limited systemic sclerosis and I’ve been referred to rheumatologist for that.
Thank you. My original post wasn’t very clear to be honest. I didn’t realise that testing positive for parietal cell antibodies was pretty much a diagnosis of pernicious anaemia.
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