High b12 No injections for a year help please

[lynnwin]

Hi I posted last night on a old thread so not sure if it has been seen ?? So have added it below please could I have your thoughts if possible ? Many thanks xxxxx RANGE ABOVE WRONG FOR FOLATE SHOULD BE ( 4.8-37.3) sorry guys for the confusion .. Mine was at 15.6

[Hillwoman]

I hope someone more knowledgeable about methylation and absorption will comment shortly. With neuropathy, your injections should not have been stopped. High levels of serum B12 are not known to be toxic. However, your folate looks too low - nowhere near optimum. This may be why your B12 is so high, because it can't be methylated to form methylcobalamin, a bioavailable form which is further converted to adenosylcobalamin.

[lynnwin in reply to Hillwoman]

So,sorry hillwomen my mistake the range should be (4-8-37-3) I have no idea how to edit it thank you for your reply xxxxxxx

[Gambit62 Administrator]

Given that the amount given in a shot would keep a normal person going for years it isn't beyond the bounds of possibilities that levels could stay high for that long. Some people can respond to high levels of B12 in blood by creating anti-bodies that bind to B12 in the blood and stop it leaving the blood - though I have no idea how that might relate to the normal process for removing B12 from the body which would happen in the kidneys - in most people this would happen quite quickly with most of the B12 passing out in urine within 48 hours.

As Hillwoman says your folate levels are very low. Usually with a methylation problem though they would be high as methylation problems tend to affect folate a lot more than B12 - so folate stays around in the blood because the body can't process it.

[Frodo in reply to Gambit62]

Yes, "anti-bodies that bind to B12 in the blood and stop it leaving the blood" - that is hard to understand. Is it really possible? Surely it wouldn't be good to take/inject more and more B12 if it all stayed in the blood forever?

Does anyone know? fbirder perhaps? Thanks.

[Gambit62 Administrator in reply to Frodo]

It does eventually get removed by the kidneys - and what seems to work is actually keeping the amount of B12 in the blood above the level where the body can bind it (protein that it creates). There have been a few documented cases - I think it is something that affects my family as both myself and my mother seem to need to keep B12 really high (having had loading shots) in order to have enough - however, my brother and aunt - who have not had a formal diagnosis and both use nasal sprays can get away with much lower doses. I don't have a formal diagnosis and that is speculation on my part - the number of formally documented cases of the phenomenon is pretty low and go back to some research in the 1960s/70s but ...

[lynnwin in reply to Gambit62]

Hi Gambit62 ..maybe as I only have one kidney it's staying in my body longer ? Thank you so much for your help xxxxxxx

[Frodo in reply to Gambit62]

Thanks, interesting stuff.

[fbirder in reply to Frodo]

Yes, it is possible for antibodies to develop that bind to B12. However, a literature search came up with one case (and one of a person with antibodies that bound to transcobalamin, the protein that carries B12 into the cell).

The kidneys work in a strange fashion. They start by chucking everything except the really big molecules into the urine. Then anything that the body wants to keep gets actively reabsorbed. It's a bit like cleaning your house by throwing out everything except the furniture, then bringing all the stuff that you want to keep back in.

The reabsorption process is saturable, there is a maximum amount that can be brought back in. So if there's a lot of B12 in the blood it all gets thrown out, but only a portion gets reabsorbed.

[Frodo in reply to fbirder]

Thanks, fbirder, this is very useful to know - I hate not understanding how it all works!

I wonder if people find they urinate more frequently when the kidneys are clearing out B12 - I thought I would but have noticed no change.

[lynnwin in reply to Gambit62]

Hi Gambit62 thank you for your help ..my mistake I put the range in wrong it's (4.8-37.3) so thunk that is ok ????? So sorry and I haven't any idea how to edit it I will try and look into the antibodies thing .. Thank you so much xxxxxxx

[Gambit62 Administrator in reply to lynnwin]

not a problem - to edit the post you just need to click on the little down arrow beside the like box - edit will be one of the options though it only appears where you wrote the entry.

It's still a bit on the lowside

clivealive mentioning you so you are aware

[clivealive Forum Support in reply to Gambit62]

Thanks Gambit62 I just thought it odd that her level was the same as the low range quoted, lynnwin now says the range was 4.8-37-3 so @ 17.8 was near the middle.

[lynnwin in reply to Gambit62]

Thank you Gambit62 I screen shot the results so have add d it below the post thank you for your help xxxxx

[clivealive Forum Support]

Hi lynnwin are you sure about the range 17.8 - 37.3 for your Folate. Mine in March was Serum Folate (SZ1706)Normal no action18.2ng/ml3.10 – 20.50ng/ml

I guess different labs use different ranges but that seems a very big variance.

Are you in the UK?

[Gambit62 Administrator in reply to clivealive]

different labs also use different units - so it may be a different unit.

[lynnwin in reply to clivealive]

Hi sorry clivealive my mistake and don't know how to edit it 😬 Range 4.8-37-3 ..yes I'm in Suffolk but my brain is elsewhere worrying about this high b12 ... So looks ok ? Thank you xxxxxxxxxx

[lynnwin]

Hiya thank you for your reply my mistake I put the range in wrong for folate it should read (4.8-37.3) ..

[fbirder]

The important question about your B12 is - why were you given injections? Because it certainly looks as if you don't have an absorption problem and that your B12 is being recycled just like it's supposed to be.

In people with a normal ability to produce Intrinsic Factor and to absorb the B12-IF complex through the wall of the ileum, there is a highly efficient recycling method for B12.

The liver can store a lot of B12, compared to the amount needed by the body for everyday running. Some of this B12 is secreted via the bile into the duodenum (the first part of the small intestine). There it will bind with IF from the stomach). The IF-B12 passes through the rest of the small intestine until it reaches the ileum, where it is absorbed across the gut wall and the B12 is released into the bloodstream.

So it's entirely possible that the B12 you had injected 2 years ago has just been going round and round, losing a tiny amount each day.

If you do have an absorption problem then this can't happen and your blood levels would have declined more rapidly. Unless there was something strange going on, like you were full-body-painting with Marmite?!

[clivealive Forum Support in reply to fbirder]

Oddly enough fbirder my younger daughter gave me two large jars of Marmite yesterday as part of my 75th birthday present.... Just off to find some brushes

[lynnwin in reply to clivealive]

Hahaha brilliant 👍 Xxxx

[lynnwin in reply to fbirder]

Bless you I like the marmite bit lol .. Was given the injections for my pheripheral neuropathy even though my b12 was in range the GP who said I could have them has retired now but she said let's give you b12 injections every 12 weeks as they seem to help and disregard the blood results then last year had bloods done and the nurse rang to say the other GP said to stop them as my b12 was 2000 .. So I haven't had any b12 or supplements for a year ! He has sent my results to a haemotologist as my lymphocytes were high as were my red cell count and white cell count so I'm worrying it could be something sinister ? On the top of results it had lymphadenopathy/ hepatosplenomegaly 😥 My friend who had PA said the liver stores b12 and your live can feel larger because of this ?? Hence the hepatosplenomegaly 😥 I'm getting stressed over it all 😥 Thank you for you reply so kind of you xxxxxxx

[fbirder]

My friend who had PA said the liver stores b12 and your live can feel larger because of this ??

I really hope your friend isn't a doctor - or anything at all to do with the medical profession. Yes, your liver stores B12 - but teeny, tiny amounts. Even if all the injections of B12 you had over 20 years had all gone into your liver and stayed there then that would be about 100 mg (1 mg 5 times a year for 20 years). Your liver should weigh something like 15,000 times heavier than that. I really doubt anybody could notice that.

The hepatosplenomegaly apparently has many possible causes, so it's not really possible to say what it might be. Lymphadenopathy is common with infections, as is high white cell count. So it may well be something fairly innocuous. But I'm not a medic and know nothing more than I can quickly glean from Wikipedia.

If your previous doctor had remarked that B12 treatment was helping then you really need to ask the new doc exactly why they're stopping a treatment that is working. So what if your blood levels are high? Mine are over 6000 but I am prescribed one jab a fortnight - because it works.

[lynnwin in reply to fbirder]

Thank you fbrider no she isn't a doctor lol she works for mind .. Don't know where she got her info from ? She has injections as she hasn't got the intrinsic factor ... 6000 blimey and my GP stopping mine at 2000 grrr he can't understand why they haven't dropped in a year but a few people on here that have helped said it can stay in your body up,to 4 years ? Why on earth doesn't the GP know this stuff ?... Thank you for all your time replying to me it really helps ..they are repeating all my bloods in 3 weeks so will see how they look then ? Maybe I should find out what I can take to lower b12 and if the neuropathy flares up I will know why !! At the minute it's ok 👍 Thank you again xxxxxxx