Confused as too what my b12 levels mean

[Star58]

Hi I'm a bit confused I have low b12 and folate..getting objections once a month only had one...feel no different...I asked what my b12 level was and was told 138..don't know what this means...I also have severe health anxiety and am really struggling at the moment...I'm just so get up!😢

[clivealive Forum Support]

Oh dear Star58 I do so feel for you in your confusion but please do not worry yourself overmuch.

Your Vitamin B12 level is a bit low and so your doctor has decided to give you injections, but it is not an overnight cure and it may take some time before you feel an improvement.

I am not a medically qualified person but I am somewhat surprised that he/she prescribed injections at only one a month when it is recommended that the starting treatment according to the BNF for Vitamin B12 Deficiency is every other day until there is no further improvement as follows:-

(ADVICE ON FREQUENCY OF INJECTIONS)

Ideally you should be receiving more frequent injections as the BNF guidelines say below of treatment with Hydroxocobalamin:-

By intramuscular injection, pernicious anaemia and other macrocytic anaemias without neurological involvement, initially 1 mg 3 times a week for 2 weeks then 1 mg every 3 months

I suggest you go back to your doctor and ask him/her to look at the guidelines, tell what your symptoms are and also ask whether you should be taking additional Folate - as you say, that is low too.

I realise that this may be difficult for you so is it possible to take someone with you who has witnessed your symptoms as, with another person there, your doctor is less likely to ignore you.

I wish you well for the future and if you have any more questions, come back on here as there are others who will be able to give you good advice.

[Star58 in reply to clivealive]

Thank you very much for your quick repy clivealive..I'm also taking folate tablets too...so maybe that will help...it's just I have so much going on just now...I have been off work a lot and there is now a chance I may loose my job...just what I needed right now!...I get very depressed and tired..is this the b12 thingy!!...you sound very knowlageable!..just want to deal better....thank you once again..😊

[Gambit62 Administrator in reply to Star58]

B12 is an essential vitamin that is used by a number of systems including those that produce new red blood cells in your bone marrow, processes used by neurotransmitters to regulate signals from nerves to the brain and also signals in the brain (so the anxiety and depression may well be B12), the processes that release energy in muscles, and the processes that generate the insulating lining around nerve cells that helps them function properly.

Generally the body is very good at extracting B12 from your food and stores quite a lot in your liver just in case but if something goes wrong with the process then you can quickly run out of B12.

B12 is used with folate (B9) in a lot of these processes so being folate deficient can have the same effect ... and being deficient in both is bad news.

B12 deficiency was first identified as a particular type of anaemia that led to madness and eventually to death. This was called Pernicious Anaemia. The cause was identified about a century ago as deficiency in B12. These days Pernicious Anaemia is actually properly used for a specific autoimmune response that attacks the mechanisms that allow B12 to be absorbed efficiently in your ileum but this is far from the only absorption problem that can lead to a B12 deficiency - others include drug interactions (eg use of PPIs to treat stomach acidity problems, metformin use to treat type 2 diabetes and various painkillers and anti-convulsants), gastric surgery affecting the ileum, genetic abnormalities affecting the ileum ... and there are others. PA is the most common cause though.

As clivealive says really you need to go back to your doctor armed with a list of symptoms and relevant guidelines

these are available in the pinned posts but as it sounds as if you are really struggling

pernicious-anaemia-society....

bcshguidelines.com/document...

summary on p2 and treatment on p8 are probably the most relevant bits.

You also need to make sure that you employers are aware that you have been diagnosed as having a problem absorbing B12 and are being treated for B12 deficiency. B12 absorption is a long term condition which means that it is a condition covered by disability discrimination in the UK though please make sure you get some good advice either from your union if you have a union at work or someone like the CAB (citizens advice bureau) on your employment rights. I would also advice that you think about joining the PAS as they do have contacts to people that specialise in supporting people who are experiencing employment problems as a result of B12 deficiency

pernicious-anaemia-society....

click on 'become a member in the top bar if you accessing through a bowser - probably the same if accessing on a phone but may not be.

[Star58 in reply to Gambit62]

Thank you very much gambit...it's all a bit much to take on board!...I will perhaps seen some sort of legal advice 're my job..as you suggested...thanks again...nice to know I have some rights!

[Gambit62 Administrator in reply to Star58]

yes, thought it was a bit long and you would struggle - just take things slowly and break it down into bits.

[Star58 in reply to Gambit62]

Will do..thank you..

[Star58]

Sorry I'm back again!...just a question...my iron and hemoglobin are fine....so I'm not anemic!...even more confusion!..😕

[fbirder in reply to Star58]

Iron deficiency anaemia is different from the anaemia that can be caused by a B12 deficiency. And many people with a B12 deficiency don't actually get anaemia. But the other symptoms will still be present.

[Star58]

Thank you fbirder...that actually made me feel better!😊

[clivealive Forum Support in reply to Star58]

As fbirder says the "anaemia" used in the title of this community is actually a poor choice of word, but one we've been stuck with for probably the last hundred years or so due to an original misunderstanding as to the cause of Pernicious Anaemia.

We recently had a list of alternative names suggested by other members on here, I cannot now remember them but I think one was "Pernicious Exhaustion".

As Gambit62 wrote, please take things slowly and methodically and as I suggested before "take someone with you who has witnessed your symptoms as, with another person there, your doctor is less likely to ignore you."

[Sleepybunny]

Hi,

Are you in UK?

I found page 29 in the "BCSH Cobalamin and Folate guidelines" useful. It's a diagnosis flowchart that shows the recommended process doctors should follow, in the UK, with someone who they think may have B12 deficiency.

page 29 mentions when to order an IFA (intrinsic Factor antibody)test. Have you had an IFA test?

It also makes it clear on page 29 that it is possible to have PA (Pernicious Anaemia) even if IFA test is negative...Antibody Negative PA.

I have had a battle over many years to try to get treatment. I now take a copy of the BCSH cobalamin and Folate Guidelines with me to appts.

I also take a copy of the summary of UK B12 documents fbirder compiled. link to his summary in third pinned post or on his profile page.

The summary has lots of useful quotes which I have used when faced with medics who do not fully understand b12 deficiency.

I gave the following to my GPs

1) Copy of BCSH Cobalamin and Folate Guidelines

2) Copy of Martyn Hooper's book "What you Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

UK b12 websites

pernicious-anaemia-society.org

martynhooper.com

b12deficiency.info

b12d.org

B12 books

As well as Martyn hooper's book, I found

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

[Star58]

Thank you all for your responses and help....I will take all comments on board!...so glad I found this site...xx

[Star58]

Hi all...had my second b12 injection today...don't really feel much different tho my tinatus has def abated ..I did ask my doc if I could have more than one a month but alas he said no😥...I'm thinking about trying the patches...could anyone suggest some good ones...as everyone appears so knowledgeable here!...especially clivealive...he comes across as very kind and caring!!...hope that's not an inapproriate comment😊...thank you all..

[Eastendgirl48 in reply to Star58]

Hi there Star, my name is Kate and it seems we are not too far apart in distance. I have joined the PAS today and was just looking at the web page.

Just wanted to say Hi.

[Star58]

To eastendgirl thank you for getting on touch...I'm sorry to hear your having such a hard time...I know it's very late...but I just wanted to let you know it would be nice to talk....I will reply properly at a more reasonably hour!...you take care..

[Star58 in reply to Star58]

Ps...my name is maria...