High b12 low folate

[Siany65]

I have been suffering with brain fog, headaches, dizziness, numbness , fatigue and difficulties walking. I have not been diagnosed with PA. My GP arranged for bloods and my folate has come back low and my b12 is over 2000 without any supplements. Gp has started me on folic acid 5mg for 3 months and wants to repeat my bloods in 4 weeks. I am worried sick. Any body have any info regarding this please?

[Nackapan]

I would go back.If you are not on any b12 supplements there needs to be more tests or a repeat test to see why b12 levels so high surely??

Folic acid usually given after B12 treatment as otherwise can muddle things.

Also a referral to haematology perhaps be appropriate.

Were no further explanations given.

Other blood results.

Go back so you are making an informed choice with treatment after a proper discussion

Stress and worrying is the worst thing for your symptoms.

A second opinion is slso an option ftom another G.p .

[Siany65 in reply to Nackapan]

Ok, thanks for reply

[Hockey_player]

Your doctor should investigate why your B12 is so high. There are many possible causes for that. It does not sound like PA. Some of us have B12 that is very high because we are injecting. It is not normal to have high B12 when not supplementing.

[Sleepybunny]

Hi,

I agree with Nackapan about going back to the doctor.

If you can't get a GP appointment and you feel it's urgent, you could call NHS 111.

111.nhs.uk/

In an emergency always call 999.

High serum B12 without taking B12 supplements or B12 injections can sometimes be a sign of a serious health condition.

I'm not medically trained but I would expect your GP to at least check your liver function and kidney function and to do a Full Blood Count (FBC) and maybe to refer you to a specialist depending on results.

It is possible to have severe B12 deficiency symptoms with a normal range or even above range serum B12 result.

This is called 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 the person develops deficiency symptoms.

MMA, Homocysteine and Active B12 (holotranscobalamin) tests may help to diagnose functional B12 deficiency.

Some doctors may not be aware that it's possible to have functional B12 deficiency.

Are your symptoms consistent with B12 deficiency?

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

theb12society.com/signs-and...

pernicious-anaemia-society....

In UK it's usual to start B12 treatment first in someone who has both B12 deficiency and folate deficiency. If a person with both deficiencies only gets folate treatment it might lead to neurological problems.

Let me know if you want more info about B12 deficiency and I'll post more links.

[Siany65]

Hi thanks sleepbunny. My gp did do all other bloods such as lft, u&e fbs thyroid etc. Wants me back in 3 weeks to repeat tests. The trouble is what I'm reading is that folate and b12 deficiency symptoms are very similar so hard to say, so yes I would say they are consistent. I'm off work at the mo so am able to rest. I havn't had any dizziness for about 5 days now but my muscle aches and weakness in arms and legs in the same. Thank you so much for replying. I did wonder if the b12 level was a true reading when looking into active/ inactive b12.

[Siany65]

Hi sleepybunny, I forgot to say before my folate came back low the gp thought I had b12 deficiency due to all the symptoms I listed to her. The strangest symptom I have is feeling as if water is running down my legs, and cold wet spots on my legs but my legs and clothes are dry.

[Nackapan in reply to Siany65]

Neurological symptoms .A referral to a neurologist indeed.

[Sleepybunny]

Blog post about being symptomatic for B12 deficiency with an in range serum B12 result.

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

Medical and health articles may contain details that could be upsetting to read.

The medical term for high B12 levels is "hypercobalaminemia" or "hypervitaminemia B12".

"Paradoxical B12 deficiency" is where people have "raised serum b12" with symptoms of B12 deficiency.

Your ICB (Integrated Care Board) in England (Health Boards in Wales/Scotland) may have its own local guidelines on "raised B12 levels".

"The strangest symptom I have is feeling as if water is running down my legs,"

I had a similar symptom in my spine.

I think strange sensations like this are called paraesthesia.

"before my folate came back low the gp thought I had b12 deficiency due to all the symptoms I listed to her."

I'm not medically trained but I think your GP needs to refer you to a haematologist and neurologist to rule out functional B12 deficiency and to help find out why your serum B12 is raised.

The GP should be able to order an Active B12 test.

MMA and homocysteine tests may require referral to a specialist.

Both B12 deficiency and folate deficiency can lead to red blood cells that are larger than normal (macrocytosis).

Giving only folate treatment to someone with both deficiencies may mean that normal sized red blood cells are produced but the neurological effects from B12 deficiency can carry on.

Have you accessed all your blood test results?

Sometimes forum members are told results are normal and then find some results are not normal when they access them.

It's quite common here to report folate, iron and vitamin D deficiencies as well as B12.

Have you got results for iron and Vitamin D?

Have you looked at your full blood count (FBC) results?

Link about Full Blood Count

labtestsonline.org.uk/tests...

Also quite common to report thyroid issues as well.

In UK, GPs often only test TSH but there are other thyroid tests that they can order or they can refer you to an endocrinologist who can order them.

Might be worth asking questions about thyroid results on Thyroid UK forum on HU.

I have written some very detailed replies on other threads.

Let me know if you want me to post links to them.

[Oneash]

All I would say is if you are going to take a folate supplement, get l-methylfolate, not folic acid. It's a more bioavailable form.