Advice for low folate symptoms please - Pernicious Anaemi...

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Advice for low folate symptoms please

Peppermintfiat profile image
12 Replies

I have been diagnosed with low folate (my b12 is slightly higher than the norms suggested by NHS but the doctor said that was fine). No anemia though.

I've been put on 5mg folic acid per day for 3 months.

For the past few months I've been dealing with anxiety, feeling edgy, struggling to sleep, having more frequent and looser bowel movements, feeling pressure in my ears, struggling to concentrate, feeling nauseous (even heaving), loss of appetite, dizziness and feeling tired.

These symptoms all get 10 times worse each time I'm on my period is this normal?

Also I've only been taking the folic acid for 16 days so far. When will I see a change? I'm really hoping it will help to resolve my anxiety. Has anyone else had success with this?

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12 Replies
AJackson21 profile image
AJackson21

Low folate feels awful! However if your B12 is just above the 'levels recommended by the NHS' it means you are deficient and you will never make a full recovery until your low B12 is treated, sustainably. That means injections at a frequency that suits your body, for life, if you aren't a long-term vegan (therefore your B12D isn't caused by diet). Folate and B12 (and iron!) work hand in hand so treating one without the others rarely works very well and can actually be risky. B12 deficiency is strongly linked to anxiety. Personally I notice dips in folate very easily and they are rectified very quickly so I'd be inclined to say that if it's not improving, I would strongly consider B12 deficiency to be one of the root causes.

Peppermintfiat profile image
Peppermintfiat in reply toAJackson21

This is my B12 result. The doctor said if it's not low they don't do anything with it.

B12 results
Nackapan profile image
Nackapan in reply toPeppermintfiat

Is that level of B12 not taking oral supplements?If so may reduce a little once your folate level up .

Or if on oral supplements may be a false reading not reaching cell level?

I had all the symptoms you describe dnd mord .

My folate was raised quickly . Mh symptknd seemed mord the effect of alot of B12 healing

I found little and often food snd drink .

The nausea difficult to deal with

...horrid.

Next blood test will show what's going on

It may be the high dose of folic acid making you feel ill .

I personally only needed 400mcg of folic acid daily to raise mg folate level quickly.

My daughter prescribed 5mg daily at a starting level of 2ng/ML.

She had to reduce the dose and got a blood test 3m after the start .

Which was fine .

She still needs a daily maintenence of 400mcg daily without side affects.

Also we're your ferritin / iron vit D levels okay ?

High folate foods will help too.

Peppermintfiat profile image
Peppermintfiat in reply toNackapan

The tests were delivered me before I started taking folic acid. The only thing I was eating n prior to the tests was multi vitamin gummys from the supermarket.

Did taking folic acid reduce your symptoms? In particular did it bring your anxiety down?

Gambit62 profile image
Gambit62Administrator

Peppermintfiat This forum is actually about an auto-immune condition that affects B12 absorption and leads to B12 deficiency. Because B12 and folate are absorbed in the ileum it is common for patients to have both B12 and folate deficiency.

Whilst folate may help with your anxiety symptoms, there are probably other things going on, including reactions to hormone levels as they change so it may not have a noticeable effect.

B12 deficiency also causes anxiety so I think it will be difficult for anyone on this forum to comment on whether folate helped them or not.

Peppermintfiat profile image
Peppermintfiat in reply toGambit62

Sorry I didn't realise that when I joined the group. I was just hoping for some reassurance I guess that things will get better as the doctors didn't tell me much. I appreciate you taking the time to reply though.

boisland profile image
boisland

Peppermintfiat - As other have shared B12 & Folate (B9) need each other to convert properly in a manner our bodies can use. When folate is low your B12 cannot convert properly, hence you have unconverted B12 floating in your serum. This unconverted/inactive B12 which our bodies "cannot" use is included your total B12 serum levels. This is one of the many reasons serum levels of B12 are misleading, hence symptoms are paramount to patients' wellness. Taking multivitamins, which I am guessing contained B12 will elevate your B12 levels, but again w/o folate to convert, the reading is skewed, as unconverted/inactive B12 is included in levels. See how the folate helps. If no improvement look to B12 deficiency as a possibility. Best to you.

Peppermintfiat profile image
Peppermintfiat in reply toboisland

Thank you for explaining this to me. I hadn't realised that the low folate was why the B12 was a higher reading.I'm sticking with the 5mg folate a day and see how it looks on the follow up test after my course of tablets are done.

boisland profile image
boisland in reply toPeppermintfiat

Peppermintfiat - Low folate does NOT cause elevated B12. When folate is low, most of the B12 found in your serum will be "inactive" as the B12 cannot convert properly to "active" B12. But it does not increase B12 levels.

ClaireWF1346 profile image
ClaireWF1346 in reply toboisland

Would have have any links to medical papers or studies that cover your points about B12 levels being falsely higher when folate is low? My GP is arguing that because my serum B12 was just above the 'normal' range at 194 that they were right to prescribe me with oral B12 instead of ongoing injections, but my folate was 4, so this will have had an impact. They focused on my bloods more than my debilitating symptoms. I have an ongoing complaint with them and would love some studies to back me up!

boisland profile image
boisland in reply toClaireWF1346

ClaireWF1346 - Low folate does NOT cause elevated B12. When folate is low, most of the B12 found in your serum will be "inactive" as the B12 cannot convert properly to "active" B12. But it does not increase B12 levels. When serum B12 is measured it measures both active & inactive B12 and counts as one. If you have "low" folate at the time your B12 level is taken, the level will reflect mostly inactive B12 which our bodies cannot use. If you had "adequate" folate at the same time your B12 level was taken the B12 level will reflect the same number as reflected w/ low folate, but it will include more "active" B12 as the adequate folate level enabled the conversion to active. That is one of the reasons why B12 serum levels are misleading as it does NOT distinguish between active and inactive, hence we never know the proportions of active verses inactive. Hope this makes sense. Most doctors are out of their depth with this condition. With B12D you treat to Symptoms "never" levels....

Sleepybunny profile image
Sleepybunny

Hi,

Welcome to the forum.

Some of the symptoms you describe can be found on lists of B12 deficiency symptoms. See lists below.

b12info.com/signs-and-sympt...

pernicious-anaemia-society....

theb12society.com/signs-and...

From personal experience, I know it's possible to have severe B12 deficiency symptoms with normal range serum (total) B12.

I've also read that it's possible to have symptoms of B12 deficiency with an above range serum B12 result.

Blog post about being symptomatic for B12 deficiency with a normal range serum B12.

b12info.com/your-serum-b12-...

You might want to search for info on "Functional B12 deficiency".

This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so person develops deficiency symptoms.

MMA, Homocysteine and Active B12 (holotranscobalamin) tests can help to diagnose functional B12 deficiency. Maybe you could ask GP to order these or to refer you to a specialist who can order them.

Thread about tests for PA and B12 deficiency

healthunlocked.com/pasoc/po...

High serum B12 without taking B12 supplements/injections can sometimes be associated with a serious health condition.

I would expect a GP to at least test liver and kidney function and to order a full blood count (FBC) in someone who has above range serum B12 without supplementing.

Link about Full Blood Count

labtestsonline.org.uk/tests...

Do you eat

a lot of meat and other B12 rich foods?

drink energy drinks high in B12 or drink/eat other foods fortified with B12?

I've read that in a person who has both B12 deficiency and folate deficiency that it's important to treat both deficiencies. B12 treatment would usually be started first.

If a person with both B12 deficiency and folate deficiency, only gets folate treatment then I've read that this might lead to neurological problems.

My understanding (I'm not medically trained) is that both B12 deficiency and folate deficiency can lead to red blood cells that are larger than normal size (macrocytosis).

Giving just folic acid to someone with both deficiencies may mean normal sized red blood cells are produced but the neurological effects of B12 deficiency may carry on developing.

"These symptoms all get 10 times worse each time I'm on my period"

I'm wondering if you have low levels of iron.

Iron

Do you have results for ferritin and other iron tests?

Link about iron tests

labtestsonline.org.uk/tests...

If GP has only tested ferritin, maybe ask them to order a full set of iron tests.

Articles aimed at health professionals may have details that could be upsetting to read.

"No anemia though."

Patient Info article on types of anaemia.

patient.info/allergies-bloo...

Patient Info website has a good article on non anaemic iron deficiency.

The article is aimed at doctors.

Search for "Patient Info Non anaemic iron deficiency" if you want to read it.

Might also be worth searching for and reading this document "NICE CKS Anaemia - Iron deficiency"

It's aimed at doctors.

Coeliac disease

Has the GP tested you for coeliac disease?

NICE guideline Coeliac disease suggest that doctors should test people with unexplained folate, B12 or iron deficiency for coeliac disease.

Coeliac UK have a useful page on diagnosis and an online self assessment.

coeliac.org.uk/information-...

isitcoeliacdisease.org.uk/

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