B12 level 149ng/l equivalent to 109pmol/L. How low ??????

[Lucy5555]

Hello, can anyone advise me please on my B12 level

Is my result classed as very low or not too bad? Just to give me an idea really it's not one of my normal problems, or I didnt know it was , should I say. Thanks

[jade_s]

Hi Lucy & welcome to the forum. Yes it's pretty low! For us to help you, can you give more info?

Do you have ranges for the test? Did you have any other tests?

What has your doctor said?

Do you have symptoms of b12 deficiency?

Do you have a family history of low b12 or pernicious anemia?

What country are you located in? That has an impact on which guidelines to refer to, treatment options, etc.

[Sleepybunny]

Hi,

That seems pretty low to me.

Do you have symptoms consistent with B12 deficiency?

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

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

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

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

b12deficiency.info/what-to-...

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Two pieces of advice

1) Always get copies of or access to all your blood test results.

If told everything is normal/no action then check for yourself.

2) Get hold of the local B12 deficiency guidelines for your area.

Normally I'd include loads of links but too tired now.

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, 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 in reply to Sleepybunny]

B12 deficiency is not always as well understood by health professionals as it should be so I suggest being well prepared for any appointments where B12 deficiency might be discussed.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

UK blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

[Sleepybunny in reply to Sleepybunny]

I've assumed you're in UK.

It's helpful to know which country you are in so forum members can post the most relevant info.

Two useful B12 books

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Films and videos about PA and B12 deficiency

PAS conferences

pernicious-anaemia-society....

Films about b12 deficiency

b12deficiency.info/films/

Some B12 websites

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

[Gambit62 Administrator]

Lucy5555, what were the ranges given with the test?

Was it active B12 or serum B12?If it was active B12 then your result is a good result

[Cherylclaire Forum Support]

IF this is a serum B12 test and not an "active B12 test", then it is a very low result. But you need to check first - as if it turns out to be an active result, it's not low at all. So I'd firstly look at the range given by the testing lab .

In general for a serum total B12 test, it seems to be that anything below 200 ng/L (or 148 pmol/L) is considered as "B12 deficient" but where you live becomes crucial to how and when you are treated. And at what level.

I was very lucky to have been tested when at 196 ng/L, with a local range starting at 197 ng/L.

Have you got any B12 deficiency symptoms ?

I am guessing yes, otherwise why would GP have tested B12 at all ? It is not part of FBC so would have had to have been requested specifically.

You may not yet be aware of what symptoms there are. I'd never even heard of B12 when I was told I was deficient. I would have a look at the Pernicious Anaemia Society website for a list.

[Lucy5555]

Hi thank you everyone who has answered I really appreciate it. I have just spent I don't know how long writing a reply and then managed to lose the whole thing . I'm exhausted so I'm going to answer a very quick reply and then get back later on hopefully

I don't know if I'm posting this in the right place for everyone to get get to see it as a reply, I'm hopeless on these sites.

The reading is the serum B12, reference range says 203 on the lab reports, which I managed to get hold of. and my level was 149ng/l which I understand is equivalent to 109pmol???

. I'm not well with other health issues, but I have for the past few years known there was something else wrong and I have done everything I can to try and get help, I seem to have spent most of my time crying to different specialists and no one putting two and two together.

Yes, I have awful symptoms of B12 deficiency.

it looks like I've not been tested since 2017 when I look back, which I've got to admit I didn't realise. I have my bloods done regularly, but looks like this one hasn't been done.

I'm presuming that if it's been B12 deficiency causing my extra problems I could possibly be in trouble with the length of time it's been.

I'm not feeling well, so I'm going for now but I appreciate any comments, I just might not answer for a bit if that's OK. My vision is very bad. Again, thankyou all.

[Nackapan in reply to Lucy5555]

Just read you've had a b12 test before. Good as a reference to see if you've gone down over time.

Hope your gp gives you a trial of b12 injections as you are out of range and have symptoms.

Also an IFAB test before.

This test will show 50% of thisd with PA

If its negative you could still have PA .

Is folate ferritin vit d iron ferritin in range?

Very annoying when you struggle to write snd it's lost.

[Nackapan]

My b12 test was s serum one.Pg/m/L the range I'm brackets on the right. (200-900) the range

So looked like :

106 pg/mL (200-914.0)

Some are well on a level of say 180pg/ml

Below range.

Some are b12 deficient 'in range ' and ill.

So it's really useful to have a baseline you are well at.

We are all different.

It really should go by symptoms.

Even though I was very ill.

Some g.ps thought even thd level I had of 106 pg/ ml wasn't that low.!

One even saying a 'red herron'

So list your symptoms

Check what sort of b12 test you had.

Let us know how you get on

[Lucy5555]

It was definitely a serum B12 test. I've got the printout from the lab at the hospital. Xx

[Cherylclaire Forum Support in reply to Lucy5555]

Yes I remember crying at most of the consultant appointments I had. Disappointment, desperation, failure to be able to produce notes/ find highlighted information, inability to understand what was being said (cognitve issues) and inability to repeat what was discussed later (memory problems).

I am quite sure that someone with more awareness of B12 deficiency would have noticed all of this, and recognised this behaviour as symptomatic. It would have helped, since all of this made me unable to do my job.

Did I mention anxiety ? Quite hard to see that as a symptom, given all of the above.

I once got told by a gastroenterologist that since I did not have a stomach-ache, he could not help me, and decided after 5 minutes that I had IBS. No tests. Months of waiting for that- and another door slamming shut.

As Nackapan said, best to keep a daily record of symptoms.

As I had so many, I decided to record some that were visible (dated photographs can be taken if not constant or frequent), some that were frequent. some that were severe - no more than ten. I have been doing this for years and still haven't found any traceable patterns. But some do, so worth trying. I have found some symptoms have gone, or become less frequent or severe, over years.

Of course, an overworked, unsympathetic consultant can dismiss all of this as obsessive, roll their eyes, refuse to do anything more and tell your GP that you have IBS/ fibromyalgia/ depression/ nothing wrong wth you at all. You can choose who you decide to show this information to. It belongs to you.

I have always chosen to be honest. Sometimes it pays off, sometimes not, but I can't see a way forward if I don't tell consultants that I now self inject frequently, even if I am almost certain that this will prove to be a distraction, and likely to delay getting any real help for remaining symptoms. If I hadn't done this, I am not sure that I would have been able to reply to you now, for instance. So my priority has always been to get back as much of my old self as I am able, and if that means frequent injections, I'll do that.

Not an easy decision. I am (was) a teacher, daughter of two teachers - and believe absolutely in education as the way forward. I was certain that if I could only make a good case, by reading research and getting a sound understanding of what was wrong, I could convince a consultant to help me.

I was lucky in that I had plenty of support here, and had an excellent GP who did not give up trying to find help for me. In the end, I decided that helping myself was not failure - it was giving myself the best chance of restitution !

There is not a known timeframe for that - so don't give up trying for the best results you can get. I did not start to really improve until I was given two injections a week - and even then, it took me three months at this frequency to know that I was getting injections. Not that they hurt, but just that I could feel that it was being done without having to ask "are you finished yet ?"

I still feel that I can get more stability. This would really help me to be able to plan my life: make promises, commitments, book things .... who knows ?

Never give up.