B12/Folate: Hey all! I’ve been battling... - Pernicious Anaemi...

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B12/Folate

Flourishingwillo profile image
5 Replies

Hey all! I’ve been battling many deficiencies for a long time. Last year while taking glutathione, all of my memories disappeared, and I was completely numb. No emotions, no memories, no thinking, difficulty in making new memories, no awareness, altered consciousness etc. My nervous system was shutting down, as well as my prefrontal cortex. I think it was ultimately a B12/folate deficiency, as I was vegan for about 16 years, and didn’t supplement. But also had severely low ferritin, low electrolytes, low D, etc, Also, undertreated Hashimoto’s for four years.

Anyways, I tried B12 injections every other day for many months last year. It helped for the first couple of months, or so, then I noticed I wasn’t making any improvements, so I stopped. I remember I stopped progressing when I added in folate. I took sublingual B12 and folate instead, and didn’t feel any improvements, or making me worse, so I stopped. I tried injections again, and the same thing, I would be numb again. In the mean time, I took electrolytes, magnesium, iron, D, ammonia reducing amino acids, etc. I noticed B1 made a significant different. Then I added in methyl B vitamin complex (again), and I improved even more. A couple months ago, I added 3,000mcg Adeno/Hydroxo B12 and 800mcg folate. I started improving even more, but had this dark doom feeling/sense, so I switched to methyl B12 again. I’ve been taking 2,500mcg of methyl B12, and 800mcg methyl folate, and have been drastically improving! Memories and senses are the top two that have improved. It is still difficult to cry. My empathy has come back! I was also experiencing severe nerve pain in my hands and arms (clear sign nerves were healing). Well, yesterday I decided to increase my dose of B12 to 5,000mcg and folate to 1,000mcg. Now I have no pain in my hands and arms, my senses/awareness have decreased, my memories are very difficult to retrieve, and I am extremely foggy in the head again. This is what happened on the injections eventually. It’s frustrating, because I was improving so much!!

I know that B12 uses a lot of potassium, so I have always been increasing that.

Why would I regress so much by increasing my dose of B12 and folate? I know I desperately need them. I’ve read about the folate trap. Could this be that? I’ve also read about B12 supplements increasing ammonia.

I currently don’t have a doctor. I was seeing a naturopath, but I feel he harmed and neglected me, so I stopped seeing him.

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Flourishingwillo
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Nackapan profile image
Nackapan

Have you had sny recently blood tests to confirm what you need to take? Good you stopped seeing the naturopath if you felt he/ she waxs not treating you well.

Apart from b12 its possible to overdose on other minerals snd vitamins giving side effects.

I personally would start over with a blood test

If its dietary could a nutritionist help you??

Also it's worth noting on b12 injections you can get worse before better but need to keep going

Gambit62 profile image
Gambit62Administrator

B12 doesn't use a lot of potassium. If you have anaemia caused by B12 deficiency or iron deficiency correcting that can cause a dip in potassium levels whilst new red blood cells are being created.1000mcg is the maximum amount of folate to take - too much folate can kick of something called 'the folate trap' in which B12 can't be used properly in your cells.

Gardenswithwings profile image
Gardenswithwings in reply to Gambit62

Can you provide your source of information about the "folate trap"? I'm new to PA, and I'm trying to educate myself about it as much as possible. I was under the impression that the folate trap referred to B12 deficiency rendering the folic acid inactive, causing it to be "trapped" and unusable. I haven't yet read anything saying that excess folate supplements causes a "trap" in which B12 can't be used.

Another group is insisting that people need to take 5 MG of folic acid a day when they are getting B12 injections. That seems a pretty high amount, but so is the amount of B12 that we receive in injections. I have no idea how much folate is really needed in order to properly use the high amounts of B12 we are receiving.

Gambit62 profile image
Gambit62Administrator in reply to Gardenswithwings

This article is rather technicalhealthunlocked.com/nkf-ckd/...

There are also some youtube videos - again are quite technical - going through the biochemistry

youtube.com/watch?v=xG52KGi...

5mcg is the dosage for correcting a folate deficiency. PA can affect absorption of other minerals and vitamins leading to deficiency and I think that is probably where the 5mg comes from - assuming that everyone who is B12 deficient is folate deficient, but who knows.

Sleepybunny profile image
Sleepybunny

Hi,

Some people on here eat potassium rich foods such as bananas. Personally I would not take potassium supplements unless a doctor prescribed them as too much potassium can cause problems.

NHS link that mentions potassium

nhs.uk/conditions/vitamins-...

Do you mind me asking which country you are in?

The reason I am asking is that patterns of treatment for B12 deficiency vary between countries.

Some links below may have details that could be upsetting.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Testing for PA

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

Two useful B12 books (both mention folate)

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Films about PA and B12 deficiency

PAS conferences

pernicious-anaemia-society....

Films about B12 deficiency

b12deficiency.info/films/

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

I am not medically trained.

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