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”normal no action needed”?

Shazy-B profile image
14 Replies

Good evening I hope you are all well.

I have had my bloods done recently as I have been feeling “off” dizzy/off balance, exhausted, twitchy eye lids, burning sensation on the right side of my mouth, breathless, palpitations, for a while now. I have had low folate a few times over the past couple of years for which I have been prescribed 5mg of Folic Acid for 4 months, however usually after I have been taking it for 3 months I start to feel worse than I did before taking it so never manage to complete the full 4 months.

Any way to cut a long story short my results are as follows:

Serum Vitamin B12 357 ng/L (197.00-771.00ng/L)

Serum Folate 15.7 ug/L (3.90-26.80ug/L)

Both state normal/no action.

Previous Folate tests have been <2 but then have returned to normal after taking the folic acid, however within 6 months have dropped again.

I have taken no folic acid for the past month.

Any advice or opinions are very welcome 🙂

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Shazy-B
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14 Replies
deniseinmilden profile image
deniseinmilden

Do you take vitamin B12 with your folic acid when you do?

The two work together and you probably feel worse because your B12 levels get too low and out of balance with the folate.

In what way do you feel worse as the course of folic acid progresses?

Shazy-B profile image
Shazy-B in reply to deniseinmilden

Hi I have never taken B12 with the folic acid as I have always been told it is fine “normal”

After 3 months I feel like I do before I start taking it ironically, dizzy, headaches and increased migraines, nauseous.

deniseinmilden profile image
deniseinmilden in reply to Shazy-B

That was what I suspected. I think it might be a good idea to try B12 supplements and see if you get any improvement.

Like Sleepybunny and others I had horrendous symptoms for years without very low B12 levels. You might be the same.

Gambit62 profile image
Gambit62Administrator

Do you have previous serum B12 levels that were much higher eg 430 or above? If so that would indicate a B12 absorption problem. Otherwise you could monitor again in a few months to see if there has been a significant drop, eg result below 270 which would again indicatean absorption problem

Otherwise both results look okay (which is what the lab comment is saying).

Note that you have hashimotos. Whilst this can affect B12 absorption, or, because it is an auto-immune disorder, increase the probability of also developing PA this isn't always the case.

Shazy-B profile image
Shazy-B in reply to Gambit62

Thank you and yes I have Hashimotos my TSH is good at the moment at 0.14 which is where I like it to be to feel well

Sleepybunny profile image
Sleepybunny

From personal experience, I can say it is possible to have severe B12 deficiency with normal range serum (total) B12 results.

Have a look at Point 4 in next link

b12deficiency.info/what-to-...

and Point 5 in this link

b12deficiency.info/writing-...

If you suspect PA or have a PA diagnosis have you considered joining and talking to PAS?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

UK guidance indicates that patients who are symptomatic for B12 deficiency with a normal range serum B12 result should be treated .

Are you symptomatic for B12 deficiency?

See Symptoms lists below.

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society.... (from PAS website)

b12deficiency.info/signs-an... (from B12 deficiency Info)

b12d.org/admin/healthcheck/...

cks.nice.org.uk/topics/anae...

b12-institute.nl/en/symptom... (from B12 Institute Netherlands)

b12awareness.org/cobalamin-... (from B12 Awareness US website)

Summary of BSH Cobalamin and Folate Guidelines

(might be worth showing GP or including quotes in a letter)

pernicious-anaemia-society....

Includes the statement "In the presence of discordance between the test result and strong clinical signs of deficiency, treatment should not be delayed to prevent neurological impairment"

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

NICE CKS (Clinical Knowledge Summary) B12 deficiency and Folate deficiency

Includes the statement "Note: clinical features of vitamin B12 deficiency can occur without anaemia and without low serum levels of vitamin B12."

cks.nice.org.uk/topics/anae...

NHS article B12 deficiency and Folate deficiency includes statements

"Functional vitamin B12 deficiency

Some people can experience problems related to a vitamin B12 deficiency, despite appearing to have normal levels of vitamin B12 in their blood." This comment is in Causes section.

"But some people can have problems with their normal levels of these vitamins, or may have low levels despite having no symptoms.

This is why it's important for your symptoms to be taken into account when a diagnosis is made."

MMA, homocysteine and Active B12 (Holotranscobalamin) tests may be helpful in diagnosing functional B12 deficiency.

This research article mentions a patient who suffered SACD, sub acute combined degeneration of the spinal cord due to B12 deficiency despite serum B12 being normal range.

Functional vitamin B12 deficiency

pubmed.ncbi.nlm.nih.gov/191...

It's possible that your GP does not realise that it is possible to have B12 deficiency symptoms with normal range serum B12.

B12 article from Mayo Clinic in US

The Many Faces of Cobalamin (Vitamin B12) Deficiency

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions (wrong ideas) about B12 deficiency that health professionals may have.

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

Sleepybunny profile image
Sleepybunny in reply to Sleepybunny

"I have had low folate a few times ...... have been prescribed 5mg of Folic Acid for 4 months ....... after I have been taking it for 3 months I start to feel worse"

I have read that it's vital that both deficiencies are treated in a patient with B12 deficiency and folate deficiency. B12 treatment would usually be started first.

I wonder if the reason you were feeling worse after a few months of folate treatment was because you possibly had/ still have a B12 deficiency that was not being treated.

NHS article on B12 and folate deficiencies includes the comments

"Before you start taking folic acid, your GP will check your vitamin B12 levels to make sure they're normal.

This is because folic acid treatment can sometimes improve your symptoms so much that it masks an underlying vitamin B12 deficiency.

If a vitamin B12 deficiency is not detected and treated, it could affect your nervous system."

BNF Folic Acid

bnf.nice.org.uk/drug/folic-...

See Cautions section in above link which says that folic acid should never be given on its own for PA (Pernicious Anaemia) or other megaloblastic anaemias caused by Vit B12 deficiency as this may lead to SACD, subacute combined degeneration of the spinal cord.

Folate deficiency

patient.info/doctor/folate-...

Wowo23 profile image
Wowo23

I have learned that vitamins make a huge difference in the way we feel...even if tests are in what is considered the "normal" range.

Have you had more indepth tests done? Gene mutation or instrinic factor? I have read that some show normal range for b12 and others only to find out they're actually deficient.

I agree with others that taking b12 with folic acid work together really well. That could help.

nellie237 profile image
nellie237

If you're not already gluten free, have you been tested for coeliac recently?

The main cause of folate malabsorption is gluten-induced enteropathy."

cks.nice.org.uk/topics/anae...

Sleepybunny profile image
Sleepybunny in reply to nellie237

My experience was that GPs do not always follow the recommended diagnostic process.

See NICE guidelines Coeliac disease below.

nice.org.uk/guidance/ng20

It says that patients with suspected coeliac disease who have already cut out gluten should be referred to a gastro-enterogist.

Coeliac UK website

coeliac.org.uk/home/

Shazy-B profile image
Shazy-B in reply to Sleepybunny

I’m sure I have been tested for coeliac and that came back “normal” too, although I definitely feel that there’s something going on there as quite often after I eat particularly bread/pasta I do get stomach pains!

nellie237 profile image
nellie237 in reply to Shazy-B

If that test wasn't within the past couple of years, you really need to ask your GP to re-test. A previous negative result does not rule out a current positive. Your GP should not refuse if you are symptomatic, and have consistently low folate levels. GP's are really bad at this, which is why:-

It is estimated that 1% of the population (UK) have coeliac = 672,000. Of those 24% have been diagnosed = 161,300. So over half a million people in the UK have not been dx.

Sleepybunny profile image
Sleepybunny in reply to Shazy-B

Check which tests were done.

NICE guidelines suggest two first line tests

1) tTG IgA which looks for a particular antibody to gluten.

2) Total IgA which checks which patients have IgA deficiency.

Patients with coeliac disease who have IgA deficiency will get a negative result in tTG IgA test because their bodies cannot make the antibodies that tTG IgA test looks for.

People with IgA deficiency will need alternative tests for coeliac disease.

See NICE guidelines Coelic disease or Coeliac UK website for list of alternative tests.

Did you have a Total IgA test?

Were you told by your GP to make sure you were eating plenty of gluten in more than one meal per day for several ẃeeks prior to blood being taken?

One reason for getting a negative result in tTG IgA test is that the patient was not eating enough gluten prior to test therefore not producing enough antibodies to register a positive result.

NHS link about coeliac disease

nhs.uk/conditions/coeliac-d...

Sleepybunny profile image
Sleepybunny in reply to Sleepybunny

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

Title of post is "Your serum B12 is NORMAL – no action required."

b12deficiency.info/your-ser...

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