Storage confusion: How long, if ever... - Pernicious Anaemi...

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Storage confusion

Nana321 profile image
8 Replies

How long, if ever, does it take the liver to begin storing B12 from injections after extreme depletion?

My level was 52 on diagnosis Feb 2020. I had weekly injection x4 weeks. Had slight improvement. Level 952. Dr dropped to monthly. Great setback. Now on weekly with some improvement but still very ill. Will I need weekly injections forever or will I eventually be able to decrease frequency? Any and all advice welcomed.

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Nana321 profile image
Nana321
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8 Replies
Nackapan profile image
Nackapan

I'm not sure about liver storing.If it does you wint be able to utilise it if you csnt absorb it anymore.

I would just concentrate on getting well with whatever frequency of b12 it takes .

Your starting level was very low if the range is 200-900 ,? I'm assuming a serum total b12 test?

Ranges are different depending on units used and lab reference range.

Its going to take time to get improvements.

Do you keep a symptom diary?

Also are you taking a multivitamin.

Once on injections levels don't mean anything.and don't need testing.

Keep an eye on folate iron . Vit D as if you csnt absorb one thing its not surprising you maybe can't absorb other things

I need iron . First time in my life. And vitamin D .

Stay on weekly and see how you go.

Nana321 profile image
Nana321 in reply to Nackapan

Yes, D low as well. Taking 25mcg daily. Range was 200-900. I'm just confused and trying to make sense of this crazy mess. Finding it hard to adjust to all the limitations and figuring out what those limitations actually are. This forum is a godsend. I felt alone and misunderstood but visiting this site daily has really helped. Thank you. p.s. I have started a log of symptoms for GP to review and to help me remember as my memory is gone, apparently.

Again, thank you.

Nackapan profile image
Nackapan in reply to Nana321

Yes it can ve very lonely. This forum really helps.

I've never used Facebook or anything like this before.

Can't even remember how i found it as i couldn't even focus well at the time.

Searching for answers like you I think!

Hope your G.p a good one . I booked double appointments.

Hope you getting a face to face.

Impossible here at present.

JanD236 profile image
JanD236

The answer depends upon the reason for your deficiency in the first place. But if you are unable to absorb B12 by digestion and you have PA then the answer is that yes you will need injections for life.

If you do have PA the stores in your liver are irrelevant as you won’t be able to absorb released stores.

A level of 952 is not high given you have had injections. Mine is >2,000. How much more than 2,000 I have no idea as the lab equipment is only able to measure up to 2,000. However, I feel well and self inject twice a week to achieve this.

Nana321 profile image
Nana321 in reply to JanD236

Very helpful information. Thank you.

Gambit62 profile image
Gambit62Administrator

If you have PA or some other absorption problem then the stores in the liver become a bit irrelevant as the mechanism used for releasing them is broken. The liver releases B12 in bile to be reabsorbed in the blood in the ileum but if this reabsorption in the ileum isn't happenning then the B12 just ends up passing through the gut.If weekly seems to be the frequency that keeps your symptoms at bay then weekly would be the frequency that you need.

deniseinmilden profile image
deniseinmilden

fbirder or someone else might be able to give you the theoretical answers to your questions about your liver, but as the others have said here, every one of us is different so it all depends on your individual circumstances. My liver packed up 30 years ago and some of my problems have probably come from that, along with other things.

I have been injecting daily for the last 6 years and have only just got to the point where I can space them out a bit more and now do about 5 a week, depending on activity and stress levels. I have finally got to the point where I feel the B12 deficiency symptoms have improved as much as they are likely to and I now can ease back to just a maintenance dose.

The time has flown by and after a bit you get so used to the injections you don't notice them. Even though my memory is OK now I can't always remember whether I've done one or not!

It's useful to take a broad spectrum A-Z multivitamin and mineral supplement plus make sure you have good levels of folate, potassium, magnesium, iron and Vit D.

Good luck with your gradual improvement and keep your levels up for optimum repair!

fbirder profile image
fbirder

The liver will start storing B12 as soon as there is B12 in the blood.

The B12 in each injections slowly diffuses through the liquid between the cells until it reaches the bloodstream. From there, some of it enters the cells that need it, some gets excreted in the urine, some gets stored in various organs, including the liver.

As others have suggested. The only way to find out what injections frequency suits you is to try it out.

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