Pernicious Anaemia Society

High Folate in recent test

Hi, me again. Had my GP app yesterday foll blood tests 10th March.

The blood tests were taken again in preparation for seeing haematologist but my referral was rejected - before I had even had these bloods drawn. Haematology rejected my referral on Total B12 blood level . Note I have nerve damage and neuro symptoms.

My question is: why do haematologists not recognise that supplementing with B12 will raise levels? Do they just think, well there's no absorption problem so carry on supplementing? So then I suppose they do not recognise conversion issues? Or the issue of B12 actualy getting into the cell to be effective in metabolism. Or genetic methylation issues? I feel as though if I don't understand their mindset then it is impossible to fight my case - to at least get seen.

Because of sudden onset of worrying symptoms and then realising that many I had been ignoring for a long time. But all coming together at once made me horrified. So I have been learning from you since the start in January. I supplemented for 2-3 days with a complex, then realised I shouldn't have, but it was, I think 3weeks before testing and had only been 200+mcg of B12. But previous to last April I had supplemented on and off for years and had managed to raise my total B12 blood level to 551 and uninformed as I was, I had been thrilled and stopped supplementing for 8months before onset of symptoms. During those 8 months of not supplementing my B12 had fallen a little to 400+. After the blood tests because of symptoms I was desparate to start supplemementing, and am using B12 sublingual 5000mcg, sometimes 10,000mcg per day. My GP booked me in for the 10/3 blood draw and when I raised the question re supplementation and what was the point, she said I was to continue supplementing and that it wouldn't matter! Because of symptoms, I did so, thinking to myself that there was some skewed thought process somewhere, but I was more concerned about symptoms than silly games and needed to get the B12 in me.

I have my results and now am worried re folate. Which is not in my supplement.

My total B12 shows 499ng/L (197-771) not a surprise, re prev blood tests and supplementation.

But my folate is now more than 20 ug/L (they seem to have altered lab reporting of folate recently. Just described as >20ug/L - so high off top of the range, but no idea how high as presume don't measure higher (no range specified but was (4.6 -18.7) and in Nov my folate was 10.7ug/L

Now my concern all along was that my B12 is not getting into cells and so deficient. If Folate is so high then it is not being used up I presume by B12. Which is a scary situation isn't it? Low B12 in cells?/high folate

The lab comment is Normal/stop supplementing folate. Why do they presume supplementing with folate in the case of high folate. But in the case of B12 levels within normal range - they don't consider supplementation maybe having an effect on results!!

High folate off the range is indicative of B12 deficiency

My symptoms are indicative of B12 deficiency

B12 involved in haemoglobin production. My MCHC (concentration of haemoglobin in cells) has always been abnormal low and my MCH (amount of haemoglobin in cells) is bottom of the range.

So all above indicators

My MCV (size) is not enlarged. However any enlargement would be cancelled out by low serum iron which tends to make RBC smaller.

This is why my GP wanted me to see a haematologist and discuss.

I want to report him to the GMC for ignoring haematology guidelines - treat symptoms. But feel too ill and stressed to cope with the ensuing mess. According to the GMC website they are there to ensure patient confidence in our healthcare providers so that we feel that our trust in them is not misplaced - lol

3 Replies

LynneG I will be reading every reply with much interest.

My last folate level two weeks ago was simply reported as >24ng/ml and I'm only taking 200mcg in my multivitamin.

My serum b12 came back at 915ng/l but like you I was still supplimenting even on the day of the test.

The letter from the hospital doesn't contain ranges sadly.

They agreed to a trial of injections that should start next week but it's only one every three months for six months and they insist I stop supplimenting at home.

I've been taking sublinguals since I found out I was low back in November (153pg serum).

I still feel rotten and have bad fatigue, burning skin on my thigh, tingling feet, tinnitus, noise/light aversion at times and naughty anxiety issues when I'm particularly tired or have done too much.

I also get short of breath and can't stand up too fast sometimes.

My only other blood anomalies were low phosphate, lymphocyte of 1.4 and high MCH 33.6pg

It's not nice........


In someone who doesn't have an absorption problem B12 levels are kept pretty constant by using stores in the liver - it acts like a tank storing some of your excess B12 in your diet when you are taking in more than you need and then releasing it into the ileum in bile for re-absorption when your dietary intake is low. However if you have an absorption problem it is like having a leak in the valve and very little of the stored B12 actually gets into your blood.

This means that in a person without a B12 absorption problem there is not really that much correspondence on a day to day basis between how much B12 they have taken in and the amount that is appearing in their blood - so generally no correlation between supplementation and levels in blood in the general population.

Folate isn't stored elsewhere in the body so levels in blood show a much higher correlation to intake through food and supplements - hence the assumption that high levels are due to supplementation.

High folate does not generally correlate to B12 levels.

Low MCH is an indicator of mkcrocytic anaemia which is associated with low iron levels not with low B12 levels which would tend to lead to a high MCH as B12 deficiency - and folate deficiency leads to red blood cells being rounder and larger so would contain more haemoglobin).

A haematologist specialises in blood disorders and/or the use of bloodwork to diagnose other conditions by measuring the levels of various protiens vitamins and chemicals that correlate to those conditions. There are a lot of blood disorders out there and a lot of correlations. B12 deficiency is just one small part of that - which isn't to defend haematologists who refuse to look into guidelines relevant to particular conditions they deal with but, unless they have a specific interest in B12 the guidelines relating to B12 are not likely to be at the forefront of their mind every time they look at a set of blood work. The haematological effects of B12 deficiency are macrocytosis so B12 is unlikely to be something they always consider if the bloodwork shows microcytosis because there is an iron based anaemia going on at the same time.

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Thanks for pointing that out Gambit. Yes sometimes when not well I suppose I have tunnel vision as in why aren't the experts looking at all my tests and joining up the dots. basically looking for root cause.

The trouble is now instead of an informed conversation with an expert (haematologist) I am left to learn as much as I can and cope with this on my own or pay huge sums of money to see a Functional Nutritional Doctor.

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