More Folic Acid Safe?: Hello, im trying... - Pernicious Anaemi...

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More Folic Acid Safe?

Wheat profile image
Wheat
โ€ข25 Replies

Hello, im trying to get my head hair and other body hair to grow again. As a female that's important to me. My d3, even supplemented, was normal but only 50 so I've doubled intake.

The folic acis is 400 mcg and I take two of these daily too. Now I've recently seen a video on Tracey Witty site that says basically that added folic acid to food masks b12 deficiency and also impedes absorption of b12. The Lancet link I think says it causes sub acute spinal nerve damage.

thelancet.com/journals/lanc...

Assuming too much folic acid is dangerous do injections ameliorate this ?

Does it reduce or affect my b12 injections adversely?.

If anyone knows or can point me the way, or to get my hair growing properly again I d be grateful.

Best wishes.

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Wheat
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jade_s profile image
jade_s

Assuming too much folic acid is dangerous do injections ameliorate this ?

Correct :) Once on injections, there is no risk . Those scenarios describe untreated B12 deficiency. Then yes it can be quite dangerous.

B12 and folate actually go hand-in-hand and you need good folate levels for B12 to work. Some of us only need to correct deficient folate labs. Others of us need higher doses because some neurological or neurophsychiatric (mental) symptoms don't resolve on standard doses of folate.

However if your problem is hair loss, I might be looking at other causes.

Low iron

Thyroid problems (test TSH, FT4, FT3) - very common cause of diffuse hair loss

Sex hormones (testosterone, estrogen)

... i'm sure there are others so hopefully others will chime in.

charks profile image
charksโ€ข in reply tojade_s

I take biotin. I have hair loss and also have problems with my nails. For some reason they don't grow on my right hand. It appears to be finally working after over two years. Nails growing and hair becoming thicker.

However it could be the B12. It takes long time to get over the effects of B12D. Mind you not enjoying having to deal with leg hair again.

Wheat profile image
Wheatโ€ข in reply tocharks

thanks clarks, your post made me smile, about reappearance of leg hair. My nails do not grow or only imperceptibly on my rh foot.

Will try biotin. Best wishes.

Wheat profile image
Wheatโ€ข in reply tojade_s

Thank you jade, im much relieved,

I can reinstate my higher folic acid level. Ive been reversing out and yesterday I had another nasty phsychriatric neurological episode, i will investigate folate levels for that.

As for my hair, well iron was fairly high.

Throid was okay but who knows as only one TSH result now, never stable; pie crust tongue again.

Estrogen is low (react badly to most meds) but seems to be a bit better since injections.

I'll 'keep on keeping on' Researching. Thanks and best wishes.

.

jade_s profile image
jade_sโ€ข in reply toWheat

I'm sorry to hear that. I take 5mg folic and folinic and any less i'm a mess. Even when labs are good. You might test RBC Folate - more sensitive test for long term levels. Mine is always in range even when serum folate is very high.

Folic worked great for me for a number of years but stopped working well (based on mental symptoms) so i've recently added in the folinic. I tried folinic only but that made me jittery. So now i take both. I'd try methylfolate but i can't get any without cellulose where i am... and it seems i can't absorb any form of folate if the capsule/tablet contains any cellulose!

For full thyroid testing (and for minerals/vitamins) you can use one of the thyroiduk recommended private labs thyroiduk.org/help-and-supp...

Good luck :)

Wheat profile image
Wheatโ€ข in reply tojade_s

Thank you so much for your help. I will try a much higher folic acid but 5 mg gave me severe stomach ache, this did subside. Maybe 1mg to try first.

Also, I've saved link for Thyroid & blood tests which i'll look at after lunch .

Good luck with your treatment journey too!

jade_s profile image
jade_sโ€ข in reply toWheat

I've heard it can cause stomach issues in people. Good idea to go slow.

You're welcome and thank you ! ๐Ÿ˜Š

Orchard33 profile image
Orchard33

I think high levels of biotin can be toxic.

Bluebell7575 profile image
Bluebell7575โ€ข in reply toOrchard33

Biotin which is B7 is water soluble and safe.

I think you are thinking of B6 which can be dangerous in high levels.

Orchard33 profile image
Orchard33โ€ข in reply toBluebell7575

Thank you for the correction.

Wheat profile image
Wheat

thanks!

Cherylclaire profile image
CherylclaireForum Support

My hair was still getting very dry, frizzy then falling out and my gums were still bleeding after being put on B12 injections.

My GP thought that was either due to folate and ferritin, both of which were low within range. She gave me three months of supplements, and from then monitored my levels regularly, telling me when to start/stop supplementing and giving me the printouts. This meant I could trial with more/less quite safely. Both folate and ferritin were unstable for about two years, so good to have the help. Difficult to do this by guesswork. At early stages, I often needed 800 mcg a day of folate, too.

I still have burning tongue and angular cheilitis, and my Oral Medicine consultant wants my ferritin level to be over 80 ug/L - just to be on the safe side. Since my GP has now left the practice, he monitors my levels.

I currently do not need to supplement either folate or ferritin, as my hair has stopped falling out. Gums thankfully stopped bleeding almost immediately, nails now okay, my angular cheilitis controlled (not gone) by nipple cream (!) but burning tongue is just an everyday symptom that is still being looked at. No answers yet.

I think that if you have a gastric problem, your tongue can be a very visible clue.

Unlike B12, folic acid and ferritin can be detrimental at high levels, so I'd get regular monitoring. All of this takes time.

Tracey Witty is right - B12 deficiency needs addressing before folate.

Good luck !

Wheat profile image
Wheatโ€ข in reply toCherylclaire

Thank you cherylclaire for your reply, I certainly have a lot to think about, reasearch and action. I am looking at blood tests atm . You are right, it will take time. Sometimes it can all be a bit overwhelming and confusing. Im trying to do the right thing bearing in mind we react differently. ๐Ÿค”. Best wishes.

Cherylclaire profile image
CherylclaireForum Supportโ€ข in reply toWheat

Yes, we do. But no need to feel alone. Look for the people who you find are most like you, in symptoms, in recovery. Take your time with it all. Sometimes, those people will find you. They will remember having been you, and what that felt like. A bewildering onslaught of symptoms.

Emotions that don't belong to you, fragility that you don't recognise - more scaring to me than the bleeding gums ! But focus on the overcoming of all this, slowly but surely.

Support is here; personal experience, access to research, experience, empathy. Kindness. It helps.

Biotin: I consulted my Vitamins and Minerals book (1997) which says, under signs of deficiency, "In adults, hair loss; a scaly red rash around the nose, mouth and other bodily orifices; intense depression; hallucinations; sleeplessness and muscle pain. " Under possible toxicity ? "No evidence of possible toxicity."

Dietary intake is 30 to 100 mcg for men and women. Dietary sources listed as : "liver, kidney, brewer's yeast, egg yolks, whole grains, breads, fish, nuts, beans, meat and dairy." Apparently, horses and pigs with severe splitting hooves are helped with supplemental doses of biotin.

It does say that in people with low biotin, increased amounts can restore hair - but that this is uncommon, and most people with hair loss are not biotin deficient. Since there is no evidence of possible toxicity, it can't hurt to find out whether this helps or not.

Wheat profile image
Wheatโ€ข in reply toCherylclaire

Thank you for your advice and the information Cherylclaire, much appreciated.

I have had c 5+ years, growing red rash around my nostrils spreading in crease to my chin. Only recently has it become scaly. Could well be Biotin needed and like you say it can't hurt to try.

Finally, found a mention of this being B2 Riboflavin deficiency, unfortunately can't tolerate B supplement with B6 and Magnesium . Also recently found photo of patient (in Dr Chandry's book) with B12D looking like me. So, I probably have other vitamin/ mineral deficiencies.

I am looking to find blood tests I need.

Best wishes.

jade_s profile image
jade_sโ€ข in reply toWheat

Have you tested for celiac or are you gluten free? I started getting a rash around my mouth/chin. Celiac testing was negative but i got so ill doing gluten loading the 2 months prior, in preparation for the test, that i cut it out anyway afterwards. Lo and behold, the rash disappeared & lots of other things improved. They can also biopsy the rash.

Of course other things can cause rash.

Wheat profile image
Wheatโ€ข in reply tojade_s

Yes, recently tested by gp and negative., however tests aren't accurate, so i'll keep that in mind as im not gluten free atm.

jade_s profile image
jade_sโ€ข in reply toWheat

Yes just another thing to add to the list ๐Ÿ˜ญ๐Ÿ˜‚

Forgot to add, it is called dermatitis herpetiformis but these sites all describe it as blisters & itchy. Mine had not progressed that far. Just red and a bit scaly and peeling. my.clevelandclinic.org/heal...

Wheat profile image
Wheatโ€ข in reply tojade_s

Thank you๐ŸŒบ

Cherylclaire profile image
CherylclaireForum Supportโ€ข in reply toWheat

You've got a lot to check for, Wheat . List keeps growing !

Wheat profile image
Wheatโ€ข in reply toCherylclaire

Yup, yes, yeah......... , that's why I'm thinking of joining the Foreign Legion. Oh, darn they don't take women.

Technoid profile image
Technoid

Folic acid can mask the anaemia that is sometimes (wrongly) expected in order to diagnose B12 deficiency. Physicians looking for anaemia and not finding it due to folic acid supplementation might therefore overlook an underlying B12 deficiency, resulting in the neurological damage from a B12 deficiency proceeding unchecked. I don't supplement folate but I get about 1mg folate per day from food so I never had anaemia, only the neurological damage - which is much harder to diagnose as you don't "look sick" at least not until more advanced stages where damage becomes harder to reverse.

I've never read anything about folate or folic acid impeding the absorption of B12, any reference for this?

400mcg is an often recommended and safe supplemental dose if you are not absorbing enough or your diet is folate-deficient. 1mg is the safe tolerable upper limit. I would approach higher doses with caution but thats your decision.

The following is a mice study so caution is needed in interpreting results but it suggests that enough folate is important but too much may be harmful:

haematologica.org/article/v...

Wheat profile image
Wheatโ€ข in reply toTechnoid

Hello Technoid, yes I agree about folate masking a B12 deficiency. Ive also read a scientific paper that said clearly that B12 can deplete folate and not being scientifically minded the rest was quite beyond me. Also that B12 and folate are co-dependent.

My folate was 'abnormal' low, as was B12. At 800 mcg my hair appears to grow again and I feel better, but this could be due to other (unknown) factors. Its early days yet

I shall read your link with interest later when less fatigued/fogged .

Thanks. Best wishes.

EiCa profile image
EiCa

there are a lot of varying opinions on optimum D3 levels, but I think a level of 50 D3 is fine. There is considerable research about too much D3 being toxic. It is for me. I have a genetic mutation and do not metabolize D3 well at all. It is a fat-soluble vitamin so should be taken with fat.

Wheat profile image
Wheatโ€ข in reply toEiCa

Thank you EiCa, I did not know it was fat soluble. That might be difficult as I don't knowingly have much fat in my diet. Was taking a b/fast but lunchtime would be better.

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