Folate

[Missfolic63]

So I.had low folate and was given folic acid had bloods again two months later as I was feeling dreadful even after the two months of folic acid my b12 was 258 I was blaming that but that has also gone up to 366...I'm still having chronic fatigue eye disturbances lightheaded it's given me health anxiety thinking what is wrong! The doctor has said its possibly anxiety but I only become anxious over the symptoms as they were frightening especially my eyes and I was very dizzy so of course I was anxious. I'm not spinning dizzy like I was now it lightheaded so that's a little relief..anyone else still struggling after their numbers are at a normal level .I've just changed my bed then needed to get in it this is no life .

[Country_Bumpkin87]

symptoms sound similar to myself currently

The gps are just useless since my regular guy went on leave- he’d looked after us since 2006!!! Knew my full history inside out xx

[Nackapan]

I was told anxiety, ? Mental health several times.I refused drugs because I knew it wasn't that .

It would come in waves out of nowhere with heart palpitations.

Those present as symptoms of low B12

for me .

My folate level rose quickly on 400mcg folic acid .

Even in A+ E as I couldnt stand for long and felt so disoriented and was twitching and shaking internally .

Felt as though perhsis going into a seizure or something.

Brain CT clear.

My pupils were dilated .

Asked if on recreational drugs .

Didn't seem to brluve I wasn't.

Vision and balance awful.

On discharge told

Anxiety.

I somehow calmly replied that it wasn't.

The symptoms would cause anxiety !!!

Not the other way round .

Like you.

Is your folate level okay now ?

How much folic acid are you taking ?

If leveks okay a maintenence dose is usually up to 400mcg daily .

I didn't even need that amount .

[Missfolic63 in reply to Nackapan]

I was on 5mg if folic acid for two months it's now at 16 doctors said very good and stopped it I'm on nothing now as b12 also went up to 366 but still feel dreadful

[Nackapan in reply to Missfolic63]

You may need a lower maintenence dose if no reason was given for it being low in the first place if not dietary. Have you ever had B12 treatment?

As having high dose folic acid can mask a b12 deficiency.

[Missfolic63 in reply to Nackapan]

No not been treated ever for b12 my diet isn't the best I'm vegetarian don't eat a lot of dairy as had my gallbladder out 18 years ago my gut didn't like high fats since especially cheese..

[Country_Bumpkin87 in reply to Missfolic63]

Mine are refusing to retest levels after 3 months folic acid although feeling worse since starting it I am certain!

They also refuse to run a full iron panel etc that I feel is necessary.

Dizzy spells light headed constant brain fog living in glasses as hurts to focus eyes- all similar to you alongside seeming anxious as am feeling so pants!

Blood pressure above normal for me today despite resting awful past 2 nights likely the withdrawal from a whole mg removed of ropinirole so also back to throwing myself around more when asleep or dosing 😔🙄cx

[Peppermintfiat in reply to Nackapan]

Did taking folic acid help relieve the symptoms of dizziness?I feel like I can't focus my eyes properly and keep having dizzy spells. I'm also not too sure if I'm seeing double or not and can see my nose in my field of vision.

It's making me very anxious.

I've only been on folci acid just under 3 weeks now hoping that it will improve soon.

[Nackapan]

If its early days you will improve. Making a bed was often my 'activity ' for the day .

Virtually bed bound at the start .

Keep going with your B12 regime .

You didn't mention what b12 injection regime you are on?

Or if oral B12 tried first?

Is it dietary as you can't tolerate diary and don't eat meat? 🤔

Our bodies can change even if our diet has been the same and healthy for years.

Absorbtion slows due to less stomach acid too.

PA can hit at any time.

IFAB test picks up about 40-50% of those with PA

It's a horrible roller coaster Keep a diary.

[Missfolic63 in reply to Nackapan]

B12 wasn't treated that was 256 now 366 just folate treated now that's good too it's 16 but I still feel awful.

[Missfolic63 in reply to Missfolic63]

I was just low folate I had once the numbers rise does it still take a long time to recover from it ?

[Nackapan in reply to Missfolic63]

You can get deficient of B12 and be 'in range ) you don't give the measurement used .Sounds on the low side if pg/ml.

Look it up . Treating folate before b12

Read up .

Go by your symptoms.

Get back to G.p with knowledge gained.

See another G.p

Get a specialist referral

They are notoriously bad at treating not treating b12 symptoms.

[Country_Bumpkin87 in reply to Nackapan]

Ifab tests? Xx

[Nackapan in reply to Country_Bumpkin87]

Intrinsic factor antibody test .Picks up about 40-50% of those with Pernicious Anaemia.

Sometimes a parietal cell antibody test done.

Though nor recommended to diagnose PA pecifically

[Country_Bumpkin87 in reply to Nackapan]

My gps have not allowed thyroid extra tests including antibody levels- so I’ve got no chance asking for this also. It’s like they analyse everything as within normal range- as everyone says what’s normal given everyone is an individual! Xx

[Orchard33]

It's always worth checking your ferritin level. If it's low you will also have symptoms of anaemia even if you're not diagnosed as clinically anaemic. These symptoms can be remarkably similar to B12D. If you're B12D aim for a ferritin level of around 100. It's become clear to me that the anaemia aspect of PA is not fully recognised and yet it is a very important and underdiagnosed PA pathway reckoned to affect 15-20% of PA people.

[HealthWealthwise]

You should definitely get the Could it Be B12 book. Saved my life years ago. Your B12 level is still low and you can even have a high b12 blood test but be "functionally" deficient, meaning the B12 is not entering your cells. High folic acid can mask a B12 deficiency. Loading doses of b12 injections and then on maintenance. Check into the book. It explains all this and more. Best wishes to you to feeling better!