Help with test results! : I’ve been... - Pernicious Anaemi...

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Help with test results!

SpiritualT
SpiritualT

I’ve been having some tests done as a result of some symptoms I’ve been having. Heart palpitations shortness of breath, severe anxiety.

I have a hiatus hernia/acid reflux/IBS and have taken PPI’s for some time.

My test results have come back. Someone in the B12 deficient group on another site has said to supplement with folic acid for 2 months whilst keeping a symptoms diary as my folate has come back slightly low (albeit in range at the GP surgery) and she suggested that low folate May be masking an accurate reading of the B12.

I will attach my test results

26 Replies
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Ignore the person who told you that.

Your folate is fine. It is more than twice the lower limit. If this person told you to take 5,000 mcg of folic acid a day then they are giving you advice that may be harmful. Ignore them and leave that Facebook group.

Folate cannot possibly interfere with your B12 test results.

Your test results show no sign at all of a B12 deficiency, or a folate deficiency.

SpiritualT
SpiritualT in reply to fbirder

I’ve been on PPI’s. They suggested that the serum B12 test shows both the active and inactive B12 in your system and around 80% of that result is inactive.

A low folate level masks a B12 deficiency that’s why they suggested to up my folate. That it should be in the upper third of the range.

fbirder
fbirder in reply to SpiritualT

Yes, the serum test shows the active plus the inactive. Yes, about 80% of that is inactive. That is why the normal range for the serum test is five times higher than the range for the active test. Because that 4:1 ratio is accounted for.

Your folate is not low. It is more than twice the lower limit. Unlike the B12 test the folate test is both accurate and precise, and there is little overlap between 'normal' and 'deficient'. It does not need to near the top of the range. You do not need to take folate.

No, low folate does not mask a B12 deficiency. High folate can mask one symptom on a B12 deficiency (macrocytic anaemia). Nothing indicates that you have a B12 deficiency.

Hi,

Have they checked your iron levels?

Iron Studies

labtestsonline.org.uk/tests...

Have they also checked your Vitamin D levels?

nhs.uk/conditions/vitamins-...

It is possible to have symptoms of B12 deficiency with a b12 result that is within range.

I had multiple typical symptoms with most serum b12 results between 300 - 500ng/L.

I wrote a detailed reply with lots of links to B12 info recently. See next link.

healthunlocked.com/pasoc/po...

I am not medically trained.

My serum ferritin is 43ug/L and my Vitamin D is 49nmol/L.

I see my Neurologist tomorrow. Shall I ask him about my results?

Hi again,

Are you in UK?

In UK, NICE guidance suggests treating Vitamin D levels similar to yours if certain symptoms are present.

See next link about NICE guidance on treating Vitamin D deficiency and insufficiency

cks.nice.org.uk/vitamin-d-d...

I suggest writing a symptoms list for neurologist which includes any neurological symptoms you have and it might be a good idea to take copies of your blood test results with you.

Do you recognise any of the symptoms in the lists below?

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

As everything appears to be within normal range they may not be receptive to discussing possibility of B12 deficiency with you.

GPs and specialists do not always have a good understanding of B12 deficiency.

BMJ article below suggests that patients should be treated if symptomatic for B12 deficiency even if serum B12 is within range.

BMJ B12 article

bmj.com/content/349/bmj.g5226

BSH Cobalamin and Folate Guidelines (UK document)

b-s-h.org.uk/guidelines/gui...

Is there a family history of B12 deficiency, PA (Pernicious Anaemia), Coeliac disease or other auto-immune conditions?

Make sure your GP, neurologist etc know if there is.

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no 01656 769717 answerphone

Perhaps you could ask GP to test you again in a couple of months time so that you can compare the two sets of results? GP is unlikely to agree as your results appear to all be within normal range.

Do you have any older blood test results from over the last year or so that you could compare with these results to see if anything has chnaged significantly?

It is possible to get these tests done privately in UK . Search "private blood tests uk".

There may also be private GPs in your area.

Have you had any thyroid tests? I suggest putting any thyroid results on Thyroid UK forum on HU.

Thanks for the detailed reply. Yes I’m in the U.K., the GP said my Vit D are within normal range.

I’ve had my thyroid tested it was fine.

Yes my serum B12 was 271 in September last year and I had an active B12 test which I Paid privately for in February of this year but I had been supplementing until a few days before and I know this gives skewed results.

There's a lot of B12 info in other thread I linked to at bottom of my first reply which I suggest you have a look at when you have time.

In a nutshell in UK, guidelines suggest if you have the symptoms of b12 deficiency, with other reasons for symptoms excluded, you should be treated even if serum B12 is within range.

Finding a GP/specialist who is fully aware of current UK guidelines/documents about B12 deficiency is another matter.....

Have a look at this flowchart below.

The right side of flowchart deals with patients who are symptomatic but have a serum B12 level that is within range.

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

Link about writing letters to GP if symptomatic for B12 deficiency with an in range B12 result

b12deficiency.info/b12-writ...

Someone in a B12 group has advised me to supplement folic acid for 2 months as mine is only 6.1 and then get retested. They said the low folic acid could be giving me a false reading of normal B12.

Nackapan
Nackapan in reply to SpiritualT

Wait. Your folate is in range.If you having b12 treatment? if needed this should be first.

SpiritualT
SpiritualT in reply to Nackapan

I’m not taking anything no B12 or folate. My folate is in range but still on the low side. Someone suggested it should be more like 15 and if this is the case, the folate reading could end up giving a false B12 reading. Increase the folate for 2 months, retest B12.

Nackapan
Nackapan in reply to SpiritualT

Look at the links you have been posted.

It is overwhelming I know.

You see the neurologist tomorrow. He /she will go through your list of neurological symptoms. May or may not test your reflexes.

If you have neurological symptoms even with a 'normal' b12 level you will be treated as in the guidelines in the links Sleepybunny has posted.

Forget about your folate just for the minute as it is in range. ,and see if you need to get B12 injections.

Hope your appointment goes okay.

fbirder
fbirder in reply to SpiritualT

NO! They are talking rubbish.

Your folate levels cannot possibly affect your B12 test. It is impossible. It can't happen.

fbirder
fbirder in reply to SpiritualT

If your active B12 test gave high results (and I'll bet a pile that it did) then that means you do not have a B12 absorption problem. If the supplements raised it that much then you must be absorbing the B12 from those supplements.

SpiritualT
SpiritualT in reply to fbirder

I thought B12 needed folate to be activated in the body?

fbirder
fbirder in reply to SpiritualT

One of the reactions that involve B12 requires one of the folates in the cell. b12science.com/B12Science/D...

That doesn't affect the amount of B12 in your blood.

SpiritualT
SpiritualT in reply to fbirder

What do I do then supplement B12?

fbirder
fbirder in reply to SpiritualT

Why? Your serum B12 is high, your Active B12 is high.

Keep taking the oral B12. It's getting absorbed.

SpiritualT
SpiritualT in reply to fbirder

In Sally M. Pacholok, R.N., B.S.N. and Jeffrey J. Stuart, D.O. authors of Could It Be B12 they suggest that levels should be over 500 for adequate health.

fbirder
fbirder in reply to SpiritualT

That is nonsense.

less than 5% of normal people have B12 levels that high.

jstage.jst.go.jp/article/jn...

cambridge.org/core/services...

If you look on the following page of Pachalok's book you'll see that she says "'we advocate treating all patients who are symptomatic and have serum B12 levels under 450 pg/ml."

SpiritualT
SpiritualT in reply to fbirder

Yes if does say that. They say to treat the symptoms not just a serum blood results as serum blood results show both active and inactive B12 so a serum blood result isn’t a true account of what your actually using.

fbirder
fbirder in reply to SpiritualT

No it doesn't say that.

Yes, 80% of the B12 in the blood is not 'active' B12. No that doesn't matter because the people who designed the tests know this and they aren't stupid. That is why the normal range for the serum test is about 5 times higher than for the 'Active' B12 test.

It's like counting individual members in a flock of sheep. You can count heads, or you can count feet. Whichever way you do it, the number of sheep you'll get will be a good measure of how many sheep you have. Only an idiot would decry the foot-counting method because it gave too high a value.

SpiritualT
SpiritualT in reply to fbirder

Yes I was supplementing B12 before my active text so that will have skewed my results. You have to be off all B12 supplements for at least 4 months for a better reading.

fbirder
fbirder in reply to SpiritualT

WHat that result tells us is that you do not have PA. You can absorb oral B12, therefore you do not have PA and you do not need injections.

Keep taking the supplements.

ur bloods look great, u should see the state of mine lol. One thing u should remember though is b12 levels that one person may feel fine on another person may feel really unwell. Also the b12 is not always accurate so symptoms need to be considered. That’s if u can actually find a doctor that listens

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