A rather low B12 result (?) - Pernicious Anaemi...

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A rather low B12 result (?)

macca2017 profile image
23 Replies

I recently sent off for a home blood test kit to check my Thyroid Health... that all seems to have come back within range.. but two things have stood out on my blood test results.

Vitamin B12 is 74 pmol/L (so well below the 140-724 range given)

and

Ferritin is high at 408 (range 30-400)

ummm is that B12 reading as scary low as my very quick research suggests it might be? As brief background... male, mid 40s.

Have a feeling I should be approaching my GP with this info...

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23 Replies
Hoxo profile image
Hoxo

Yes. Book to see GP asap. Don't take any B12 until you've been seen as they may want to take more bloods.

wedgewood profile image
wedgewood

With a B12 level that low , I'm amazed that you haven't reported any B12 deficiency symptoms . Yes doctors appointment asap, as previous posting suggested

clivealive profile image
clivealiveForum Support

Also ask to have your Folate (B9) level checked as well as this works together with the B12 macca2017 and as Hoxo says don't take any supplements until your doctor has run the tests.

Do you have any neurological symptoms associated with a B12 deficiency?

Gambit62 profile image
Gambit62Administrator

you can find a list of symptoms of B12 here - though there is a huge overlap with thyroid so may be difficult to spot them

pernicious-anaemia-society....

go through and tick those that apply

at 74 it is highly unlikely that you are not B12 deficient - but the test range is such that it misses 25% of people who are B12 deficient but also has a small chance of picking up 5-10% of people who are not B12 deficient if going just by the range

your GP may look for signs of macrocytosis (larger, rounder red blood cells) - this is a symptom of B12 deficiency (and folate deficiency) but isn't among the first symptoms to present for at least 30% of those who are deficient.

You definitely need to go and see your GP.

There is an outside possibility that the test may have given an erroneous result.

I can't really comment on the ferritin beyond the fact that it is a protein that binds to iron allowing it to be metabolised - it isn't a direct measure of the amount of iron in your haemoglobin. If you have been supplementing iron then it might be an idea to stop but please discuss this with your GP

macca2017 profile image
macca2017

Hi... thanks for the replies.

Follate I believe is ok... 7.13 (within the range of 3.89 - 26.80)

I am right now going through a lot of stress for one reason or another and have been for getting on for 18 months straight. Work place related stuff I can't go into detail on where my employer is at best treating me unfairly and at worst breaking the law.

So this blood test was taken after a period of not really sleeping or eating properly for several days... so maybe not the best of times to be having a blood test ;-)

As for b12 deficiency symptoms... well Im having trouble concentrating reading through the vast screeds of text on the subject, so does that count as one? :-) Seriously though, Ive always had to battle a bit of depression and anxiety all my life.. anti depressants, anti psychotics etc never did anything for me... I see low b12 could account for psychological difficulties. Im not getting my hopes up just yet for a magic bullet that Ive long since given up on. I still rely on the coping strategies that I formulated in my teenage years and 20s.

I wonder if the suggestion of macrocytosis (larger rounder red blood cells) might account for why I found it almost impossible to get enough blood out of multiple puncture points on my fingers. I ended up having to soak my hands in warm water, and a couple of frenetic bike rides round the block to get the blood pumping before I could get enough blood out to fill the tiny tube.

Anyway, Im a typical man and generally only go to the doctor if I feel like Im dying.. although strangely I was there yesterday to get signed off from work ,until this mess is sorted. I didn't think to mention the blood results... I will drop him a letter and see what he thinks. As Im struggling to find anyone who's had a lower reading... it seems like a big red flag. Thanks again for your answers.

Polaris profile image
Polaris in reply tomacca2017

Its unlikely a few days of not eating would have produced such a low B12 result, Macca, plus large red blood cells are characteristic of B12 def.

Many medications deplete B12def, including anti depressants, PPIs, antibiotics, etc. so, as you already suspect, this could actually lead to depression and many other psychological and neurological symptoms.

Good luck for optimal treatment.

plug profile image
plug in reply tomacca2017

Hello Macca,

i had macrocytosis and enlarged liver when my PA was finally diagnosed by a locum doctor, at that time my count was 40. The hospital said incredibly low, however i'm on 6 weekly injections and so long as i get them within 6-8wks i cope just fine.I also have problems with ferritin and iron stores and my thyroid. Good news is you can feel a whole lot better if you get on the right frequency and dosage of meds.

Hope you feel better soon.

macca2017 profile image
macca2017 in reply toplug

While I don't wish ill health on anyone, its "nice" to hear that theres someone out there who got a lower reading than me!! Glad to hear your condition is under control.

Its entirely possible I might have an enlarged liver, as Ive been a heavy drinker for a few years and I see that can be another risk factor for B12 depletion... but I did recently quit for a couple of months. Perhaps something I should consider doing again if I have the will power...

Allyson1 profile image
Allyson1 in reply tomacca2017

Just personally, my b12 deficiency worsened gradually over a couple of years, but then suddenly nosedived after one night of heavy drinking, the first in a while. That's when the neuropathy and memory loss really set in. It took nearly 2 years before I felt normalish again.

Alcohol can deplete your b12, and if you're already low...best thing is probably to hold off if it safe to do so. Make sure your doctor knows this detail.

Gambit62 profile image
Gambit62Administrator in reply tomacca2017

I had 40+ years of depression and anxiety before I was told I had a B12 deficiency and it went when I managed to get my B12 levels to where they needed to be - so wouldn't rule that out as being involved - it can certainly affect your ability to cope with stress.

macca2017 profile image
macca2017 in reply toGambit62

I just found anti-depressants did nothing for me. I had my DNA sequenced out of curiosity a year or two ago through the 23andme website... one of the intriguing things was that Im 7-11 times less likely to feel the benefits of anti-depressants due to some genetic quirk! oh bugger! :-) Im always jealous when I hear people saying how much said drugs have helped them... and some people who assume they are a magic wand just look bemused at me whenever I tell them that no they don't help everyone... and some of us are just told to grin and bear it, and try not to kill ourselves!

Hey ho.. wouldn't it be wonderful if this turned out to finally be something to make me feel better.

Allyson1 profile image
Allyson1 in reply tomacca2017

I never did well with antidepressants either. That was quite an ordeal.

I initially found b12 supplementation to be way too stimulating, and it really affected my mental state. I had to tailor it a bit.

macca2017 profile image
macca2017 in reply toAllyson1

thanks for this... it looks like Im going to get injections once a second blood test confirms my home blood test reading.

It doesn't take much to over stimulate my mind... so this could get interesting.

Laura221 profile image
Laura221 in reply toAllyson1

What did you do then? I had my first injection 2 days ago, and my anxiety/OCD is spiking at the moment.

macca2017 profile image
macca2017 in reply toLaura221

I haven't started any treatment yet... just presented my low blood test result Ive obtained through a 3rd party... so just getting that verified tomorrow.

as for your anxiety/OCD my advice would be to think back to whatever coping strategies you've used up till now. You've got this far after all :-) better times ahead.

Allyson1 profile image
Allyson1 in reply toLaura221

Lower doses, slower increases, lots of electrolytes, potassium-rich foods. Go at a pace you're comfortable with.

Polaris profile image
Polaris

Your B12 is very low macca and, as Wedgewood has pointed out, it would be surprising if you were not experiencing neurological symptoms, which should be treated urgently and adequately.

Here are some useful initial links in case you haven't already found them:

b12deficiency.info/what-to-...

Latest BMJ research document with useful summary to show GP in case you experience problems with treatment:

cmim.org/pdf2014/funcion.ph.... :

Re folic acid, (page 4 of the above) t should not be taken while B12 is very low as it gets 'trapped', cannot be used, and could make neurological symptoms worse :

"If there is noncomitant B12 and folic acid deficiency, then B12 must be started first to avoid precipitating sub acute degeneration of the spinal cord".

gbhealthwatch.com/Nutri...

"High levels of folate are normally okay as long as your vitamin B12 level is also normal. Cells need vitamin B12 to use folic acid and when vitamin B12 levels are too low, folic acid cannot be used and builds up in the blood." :

Hoxo profile image
Hoxo

My depression and anxiety problems improved considerably after B12 shots. I think all patients presenting with depression should be tested for folate B12 and vit D deficiency.

Sleepybunny profile image
Sleepybunny

Hi,

High ferritin can sometimes be associated with a variety of health conditions. The GP might consider ordering a complete panel of iron tests.

bmj.com/content/351/bmj.h3692

labtestsonline.org.uk/under...

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

"Could it Be B12" by Sally Pacholok and JJ.Stuart

B12 documents

If you are in UK, I'd suggest reading the "BSH Cobalamin and Folate Guidelines" before your next appt.

It came out in 2014 and gives recommendations on diagnosis and treatment of folate and B12 deficiency. Some GPs may not be aware of this document.

b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate Deficiency" should be on page 3 of listed guidelines.

Link to flowchart in BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

My understanding of the flowchart is that anyone with symptoms of b12 deficiency (with low b12 or an in range B12 result) should have an IFA (Intrinsic Factor Antibody) test and should start B12 treatment.

BMJ B12 article

bmj.com/content/349/bmj.g5226

Lots of b12 info in pinned posts on this forum.

UK B12 websites

PAS website

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

b12d.org website

b12d.org

What to do next?

b12deficiency.info/what-to-...

I am not a medic just a person who has struggled to get a diagnosis.

Steap profile image
Steap

Going through stress.....

That's the nut shell right there.

Low b12 and stress are the proverbial chicken an egg.

My money is on low b12 causing stress.

Some say stress gobbles up b12.

What a set up.......

macca2017 profile image
macca2017

thanks for all your helpful replies. Im booked in tomorrow for an "official" blood test... and Im told if that confirms my low reading, I'll be looking forward to 2 weeks of injections - every other day - and then one every 3 months.

I guess I will just have to get over my needle phobia and try not to faint :-)

Sleepybunny profile image
Sleepybunny

"if that confirms my low reading, I'll be looking forward to 2 weeks of injections - every other day - and then one every 3 months. "

Are GPs going to order an IFA (Intrinsic Factor Antibody) test?

IFA test can help to diagnose PA (Pernicious Anaemia). GPs ideally should be trying to find out why your B12 is low.

2 weeks of every other day injections then one every three months reads like the standard UK treatment for B12 deficiency without neuro symptoms.

A UK patient with B12 deficiency with neuro symptoms (eg tingling, pins and needles, tinnitus, balance issues) is supposed to get an injection every other day for as long as symptoms continue to get better (this could mean loading doses for weeks even months) then an injection every 2 months. I made sure my GPs had a list of all my neuro symptoms.

Links to lists of B12 deficiency Symptoms

pernicious-anaemia-society.... click on Checklist

b12deficiency.info/signs-an...

See following link for details of UK b12 treatment.

evidence.nhs.uk/formulary/b...

Info on UK b12 treatment can also be found about a quarter through "BSH Cobalamin and Folate Guidelines".

It's important to get the right level of treatment as not enough B12 could lead to permanent neuro damage.

Has GP ordered a full blood count?

labtestsonline.org.uk/under...

macca2017 profile image
macca2017 in reply toSleepybunny

On my blood test form the doctor has written "?Pernicious anaemia" so it's on the radar.

I'm down for a blood count. No idea on the intrinsic factor test.

i didn't ask too much or push too much. Just happy to be listened to. I've tried not to have too much engagement with the NHS over the years due to a bad experience in my 20s.

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