Dementia or Folic Acid Deficiency ? - Pernicious Anaemi...

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Dementia or Folic Acid Deficiency ?

MrJustatip profile image
9 Replies

I too was dx with low folic acid. It really messed with my head. I have also been prescribed folate acid tablets to raise my levels. Mine were not being absorbed. I was feeling like I was losing my mind. Brain fog, feeling lost and unable to make decisions, and very confused. It also affected my emotional levels. I'm a guy who rarely cries, but one day I could not catch my breath. My wife called ER and they came out and said nothing seems wrong, but I was uncontrollably crying the whole time (I mean really crying hard). Low folic acid will mess with your emotions. I usually drink at least 1 cup of coffee per day, plus the occasional coke and lots of chocolate. Then I looked up the effects of caffeine on folate absorption. I stopped all caffeine consumption as caffeine keeps you from absorbing folic acid (B9). Now I am still deficient, but we can tell I'm starting to get better. We usually have lab tests done twice per year and in the past 4-6 years, I noticed on my test results, they never tested for vitamin B9, but only vitamin B12. If you ask for a lab test, be sure to tell them you want all vitamins checked, (D is super important) because the one you are low in may not be tested and how do you know if you are deficient without seeing the results? Note: folate deficiency causes memory loss and dementia-like symptoms, so do all elderly patients have dementia or folic acid deficiency?

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Pickle500 profile image
Pickle500

Folate (B9) and cobalamin (B12) are sort of bedfellows in all of this, hence why both are usually checked together during blood tests. Deficiencies in either can reveal similar symptoms, and I certainly had dementia-like symptoms on a B12 deficiency i.e.g confusion, delusion, imagined persecution from medics, panic and depression.

It is possible that dementia has some route in vitamin deficiencies but I don't think it's a straight comparison. In essence, both B12 and B9 promote the myelin sheath across our nerves. Deficiencies in both or either leave nerves exposed and unable to conduct correctly.

So we may have suffered from lack of nerve conduction due to patchy myelin sheat. Whereas dementia could be a more serious wearing away of nerves that's not reversible in the same way.

Hence why I think most symptoms lists suggest 'deficiencies can mimic dementia'.

Hope that helps

wedgewood profile image
wedgewood

Our stomach acid production gets lower as we age . We need a good supply of stomach acid to help break down our food so that we can absorb the vitamins , minerals and trace elements. So older people can often be deficient , especially in B12 , as it is a difficult vitamin to absorb .

B12 and B9 deficiency can cause confusion , brain fog , memory loss .and many other symptoms.

I’m not saying that B12 and B9’deficiency is a cause of dementia in the elderly of course , but it could be a contributing factor .

Pernicious Anaemia patients have low/no stomach acid (Hypochlorhydria/Achlorhydria , due to their Intrinsic Factor Antibodies which destroy the cells ( parietal ) which produce the Intrinsic Factor and stomach acid .

We P.A.patients all know those horrible mental symptoms from the time before treatment , or were being insufficiently treated with B12 injections.

It’s always advisable as a P.A.patient to supplement with a modest 400 mcg folic acid tablet as well as getting sufficient B12 injections.

But , MrJustatip, you will need much higher supplementation for a time, as your folate deficiency is quite severe .

MrJustatip profile image
MrJustatip in reply to wedgewood

OK, thanks for the advice. I am taking 1 mg tablets now. Does that seem like enough or are you suggesting a Vit B12 shot should also be needed? This seems like a good site to check out other people's experiences. My wife and I have both been misdiagnosed.

Sleepybunny profile image
Sleepybunny

Hi,

I just wondered what your serum (total) B12 results were like.

From personal experience, I know that it's possible to have severe b12 deficiency symptoms with a normal range serum B12 result.

I developed dementia type symptoms in my early 40s including

forgetfulness/memory problems

difficulty getting right words out (nominal aphasia)

strange behaviour eg putting car keys in the fridge

which disappeared when I finally started B12 treatment.

I had one below range b12 result in past but most of my results were well within range.

I've read that if a person has B12 deficiency and folate deficiency, both should be treated.

In UK B12 treatment would be started first as treating folate deficiency without treating a co-existing B12 deficiency may lead to neurological problems.

A few links that may be of interest, folate deficiency is mentioned in most of them.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some overseas members.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring and an online contact form.

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 (folate deficiency is mentioned in both)

"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.

Sally Pacholok is a US campaigner on B12 deficiency. She has written some online articles about B12 deficiency.

I came across an online slideshow she presented to a conference about aging in US.

Search online for "Sally Pacholok conference"

Films and videos about PA and B12 deficiency

Films about b12 deficiency

b12deficiency.info/films/

PAS conferences

pernicious-anaemia-society....

Some doctors have wrong ideas about B12 deficiency

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from other countries)

b12-institute.nl/en/diagnos...

Misconceptions about a B12 deficiency

(From Dutch B12 website)

stichtingb12tekort.nl/engli...

I suspect that in UK, a lot of people with dementia symptoms have B12 deficiency and/or folate deficiency.

I watched my mother fade away into dementia and I'm convinced she had B12 deficiency, possibly folate deficiency as well.

There are some stories about elderly people with B12 deficiency on these UK blogs about PA and B12 deficiency.

Some of the stories are upsetting to read.

martynhooper.com/

b12deficiency.info/blog/

Stayfocussed profile image
Stayfocussed

You may have the MTHFR gene, it's a genetic mutation gene that stops you from processing the synthetic folic acid, you have to take folate, the natural form, or lots of green veggies...

Technoid profile image
Technoid in reply to Stayfocussed

This is not true. The CDC cover this on their page on the topic:

"You might have read or heard that folic acid is not safe if you have one or two copies of the MTHFR C677T variant. This is not true. Even if you have one or two copies of the MTHFR C677T variant, your body can safely and effectively process all different types of folate, including folic acid."

from cdc.gov/ncbddd/folicacid/mt...

More info here :

undark.org/2021/01/04/the-f...

Stayfocussed profile image
Stayfocussed

the binding (or blocking) of the (natural) 5 MTHF receptors and transporters

Stayfocussed profile image
Stayfocussed in reply to Stayfocussed

Those with some form of MTHFR gene mutation are not advised to take folic acid due to the risk of folic acid buildup. Excess unmetabolized folic acid can lead to toxicity, which in turn may lead to the binding (or blocking) of the (natural) 5 MTHF receptors and transporters by the folic acid.

Stayfocussed profile image
Stayfocussed

I have got the MTHFR gene and my folic acid was sky high because I can't process it and it just sits in the blood causing toxicity. I have never taken folic acid but they have added it to everything so it's hard to avoid

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