Hi Everyone - I’m new to the group and have just been diagnosed with PA. My b12 blood test was 311 but I had strong neurological symptoms that went away with b12 shots.
Starting from March 2019 until I started B12 shots 3 weeks ago, I was having neurological symptoms where my feet and hands were burning and tingling. I had strong brain fog. Blurry vision. Eyes very sensitive to light. Dizzy every time I stand up. Fatigue. Headaches. Numb and tingling patches on my back.
I never had such symptoms in my life and this all started when I started taking a folic acid vitamin for the first time in my life. When I stopped the folic acid in the middle of that same period, my neurological symptoms disappeared. And then I started again and my symptoms blew up! I felt like I was under attacked.
Now I supposedly have pernicious anemia. My doctor diagnosed me with positive antibodies to intrinsic factor. But she did this test while I was receiving b12 shots?!?!
So I have two questions for the group:
1) has anyone experienced folic acid vitamins exasperating B12 deficiency symptoms? I know it can be pure coincidence but I really feel like folic acid vitamins created all these problems for me.
2) can my Intrinsic Factor test be accurate while I was on b12 shots?
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Andrianna
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It is recommended that for testing intrinsic factor antibodies: keep one week between an injection and the test. However having been found positive for Intrinsic Factor Antibodies this is probably irrelevant.
Did you take the folic acid before the start of the B12 injections?
I took folic acid vitamins before the b12 shots. I started them in February 2019 and all of these neurological problems started in March 2019. Then I stopped folic acid and my symptoms went away. And then I started folic acid again And my symptoms blew up. Then I started b12 shots and my symptoms got much much better. It could be a coincidence with the folic acid but it doesn’t feel like it! Now after realizing the correlation, I have been off folic acid for 4 days.
1. There are some worries that very high levels of folate can cause neurological damage, especially when low B12 is also present. But I've not read of anything starting and stopping that quickly. How much folic acid were you taking. I know some irresponsible people on Facebook insist that you need 5000 mcg a day, even though there is evidence that this is harmful.
2. High levels of B12, such as those soon after an injection, can cause false positives in the IFAB test - especially the older tests. But the latest says that it has no interference problems. But it's till advised to leave a few days between an injection and being tested.
In your case, you obviously have a B12 deficiency (the positive response to the injections is the best indicator we have). And, barring other possible causes (being vegetarian, taking PPIs or metformin) then PA is the most likely cause.
I’m preparing for pregnancy so I started taking them and then all of these problems surfaced. I have been reading old medical journals from the 1950s that say folic acid exasperates neurological b12 deficiency symptoms in people with pernicious anemia.
That sounds exactly like me!
You wrote that there were “worries of very high levels of folate can cause neurological damage.” This could be my issue. Where did you read that?
Once you have started the B12 injections then you should go back to the folic acid. Or, you may want to try methylfolate or folinic acid (both 400 mcg, both available from Amazon) to see if they are any better.
My USA doctors told me to take 1,000 mg/per week for 6 weeks. and then 1,000 mg/month for 6 months.
But now I'm back in Saudi Arabia where I live and they gave me three B12 shots during the 3rd week. And then I will return to weekly shots. And then to monthly shots.
Sally Pachlok RN who wrote, with her MD husband, Could it be B12, talks about something like this, regarding putting folic acid supplements in cereals, having precipitated B12 deficiency in cases. Have a look at the film in the below article. It's the second film down. You will learn a lot about B12. candobetter.net/node/4463
you can be tested for IFA whilst on B12 shots - doing the test too close to a shot can cause a false positive. The time you need to leave it between a shot and the test to avoid false positives is dependent on the exact test method and varies between 24 hours and 10 days.
The concerns around folic acid and B12 treatment arise from a condition that causes irreversible damage so the fact that the problem goes away suggests that there is something else going on - probably something genetic in nature and having the B12 injections has created the right conditions for some gene to be activitated that makes a process involving folate not run correctly. As its sudden onset then its possibly something to do with the COMT process which resets neuro-transmitters - its a process that can run too fast as well as too slow. B12 acts as a methyl donor in this process so having the extra methyl elements from the methylcobalamin may be a factor in the problem.
If you don't have to take the folic acid then I'd suggest you avoid it.
If you have weak genes that don’t process B9 well then it is best to take the fully reduced form of B9 called methyltetrahydrofolate, or commonly shortened as methylfolate.
Folic acid, folinic acid and folate forms can cause side effects if you have genetic polymorphisms in the methylation pathway.
Folinic acid is near the end of the methylation pathway but even that causes side effects for me.
B12 deficiency can lead to enlarged red blood cells ( macrocytosis).
Folate deficiency can also lead to macrocytosis.
In a person who has both B12 deficiency and folate deficiency then just taking folate may lead to normal size red blood cells but the effects of B12 deficiency on body can continue. Folate treatment may mask the effects of low B12 on red blood cells.
See Management section in next link which stresses importance of treating any co-existing B12 deficiency if treating folate deficiency. It's a UK link so units/ranges etc may be UK specific.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
I am not medically trained. More b12 info in pinned posts on this forum.
I have written some very detailed replies recently which may be worth searching for. I'm in UK so info may be UK specific.
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