Weekly shots forever?

[HappyMonk]

Does anyone have information about the possibility of being unable to replenish the B12 store in the liver? I have been self administering hydrocobalamin and methylcobalamin shots for over a year now.

I also went from a plant based to a carnivore diet (mostly lamb and eggs, frequent herring)

If I wait longer than a week to take a shot, I start getting symptoms again. (mostly agitation, concentration/cognitive issues).

Will I have to take shots every week for the rest of my life? I appreciate any input!

[Nackapan]

Probably yes .Even if you have b12 stores in your liver if you can't metabolize from food you can't then from liver stores .

If weekly keeps you well just keep going .

[HappyMonk in reply to Nackapan]

Yes, I will be sure to keep giving my body what it so needs! 🙏🏼

[MrsTuft in reply to Nackapan]

Hi Nackapan. I understand how we can’t absorb from food but can you tell me through how we can’t use liver stores please? I want to understand it to argue with my GP if necessary…

[Nackapan in reply to MrsTuft]

It needs the same process I don't know the science .

The gps dont either

.

If we could use liver supplies once replete noone would need regular b12 injections

It's well documented b12 injections for life.

PA is difficult to diagnose

Alot stil unknown about how the system gets broken.

B12 transporters ??

B12 injections overriding any 'normal ' processing ??

If the b12 stores could be utilised its because the cause was dietary only .

So once replenished and a constant supply of b1dl2 supplements with food the body works .

[MrsTuft in reply to Nackapan]

Makes sense thanks.

[Wwwdot in reply to MrsTuft]

Mrs Tuft

Hope you get your GP on side. Good luck with the education of them! 🤗🤗🤗

[wedgewood]

If you have Pernicious Anaemia you will need shots for life . B12 that is stored in the liver of PA. patients , is of no use if you have P.A. as it cannot be absorbed in the stomach , due to lack if Intrinsic Factor and low or no stomach acid

, Keep injecting B12 to keep well .

[HappyMonk in reply to wedgewood]

Thank you. To be honest I am just glad I found something that works. I was pretty close to the edge for a while! But I was hoping to maybe be able to stop needing shots so often. But if that's what it is, I'm ok with that. 🙏🏼

[wp69]

Ive been diagnosed with cirrhosis , but self injecting for over a month , I feel great again

[HappyMonk in reply to wp69]

I am happy for you that you see improvement. It's such an essential vitamin! Lately I have been experimenting with castor oil packs. These are compresses with castor oil, often placed on the area above the liver. Regular practice of this for 60 mins a day is said to improve liver function, stimulate the lymphatic system and blood flow to the liver. It's also very soothing and facilites a shift from the sympathetic to the parasympathetic nervous system, in other words, it brings about deep calm. It's also said it supports healing from fatty liver disease. There are ample resources online about the benefits of Castor packs. All the healing and best to you 🙏🏼🙏🏼🙏🏼

[Asselchen]

The b12 that is stored in the liver doesn't just stay there. It's part of the enterohepatic cycle, meaning it goes back into the small intestine, has to be absorbed again, goes back to the liver, and so on. So if you can't absorb b12 via intrinsic factor at all, you don't have a liver store.

[HappyMonk in reply to Asselchen]

Thank you so much. I was totally unaware of this cycle. I will be sure to look more into it and see if I can learn about it.

[helvella in reply to Asselchen]

If we have no B12 issues at all, we need only sufficient intake of B12 to replace the losses. Given that enterohepatic recirculation is incredibly efficient, that means something of the order of 3 micrograms a day. (Exact numbers vary.) Anything which affects the efficiency rapidly increases the amount of B12 that we need to absorb.

Reminds me of the energy store - ATP. Astonishingly, we make of the order of our own body weight of ATP every day. And use that up. But the constituents are very efficiently recycled.

[Nackapan]

I note you are from the Netherlands. Dr.Hajo Auwerda runs a B12 Clinic and has plenty of resources online to help you .

[HappyMonk in reply to Nackapan]

Thank you, it's actually quite close to where I live. I think I will take your advice and go for a consultation.

[WIZARD6787]

Thank you all for your replies. I was not aware of the science of not being able to utilize B12 stored in the liver. I did determine by being aware of how my body reacts to supplementation that I need a constant supply of B12 supplementation.

[Rexz]

Yes, concur with the other responses. Your liver stores a 2 to 3 year supply of B12 so it would seem, as my doctors told me, that once you build up liver stores you should be able to go for years without an injection. NOT True! The only B12 stores you have if you've been diagnosed with PA is that B12 currently in your blood serum, hence the need for frequent injections.

B12 is absorbed in the Terminal Ileum which is the last part of the small intestine. In order for those ileal receptors in the Ileum to accept and absorb B12 the B12 must be bound to Intrinsic Factor (IF) Protein. This binding takes place in the Duodenum which is the first part of the Small Intestine where also the Bile Duct is located and also where B12 from liver stores is secreted. For those with PA the B12 malabsorption problem is due to no Intrinsic Factor. When B12 from the liver is secreted into the small intestine via the bile duct and there is no IF then there can be no IF-B12 binding just as if you had ingested B12 orally. In other words the recycled B12 from your Liver stores just washes out through your urine right along with the B12 from the wonderful steak you just ate.

That's the short version... 😜

Best wishes, Rexz

[HappyMonk]

Thanks, Rex. I was unaware of this process. I thought the inability to absorb B12 had no impact on the ability to store B12. I don't have an "official" diagnosis of PA but seeing that I need weekly shots to function stably, I'm assuming it's the case. I suspect my history of substance abuse is the most likely culprit seeing I had no problems when I was younger.

I might however make an appointment with a local B12 clinic to see if I can confirm if I indeed suffer PA.

[Rexz in reply to HappyMonk]

Well PA really doesn't affect your Liver's ability to store B12. Trust me your liver is storing away and that reservoir, most likely for all of us that are injecting, is at maximum. It's just the recycling part through the small intestine that is broken.

[Rexz in reply to Rexz]

Also, you may want to consider getting a confirmation on PA or really Autoimmune Gastritis (AIG) as it's important to know to affect proper treatment. Maybe ask your doctor to run Parietal Cell Antibody (PCAB) and Intrinsic Factor Antibody (IFAB) tests.

These are simple blood tests.

Best wishes, Rexz

[HappyMonk in reply to Rexz]

Thank you, I will be sure to mention it when I go for a consultation.

[HappyMonk in reply to Rexz]

Ah yes, of course. Now I get it. So it's stored but my body fails to get it in the blood stream through that route and intramuscular shots do reach the bloodstream and thus the cells that need B12.

[Rexz in reply to HappyMonk]

Yes, that's correct. 😊

[wedgewood in reply to HappyMonk]

Sub-cutaneous injections also reach the blood , but probably take a little longer .

[Rexz in reply to wedgewood]

Yes, I do SC injections which seem to work fine for me. I do inject about every four days or so but with methylcobalamin.

[Litatamon in reply to Rexz]

Is it hard on the liver to store all that we inject (Note: I know b12 at high levels is safe)? Is there some sort of mechanism that makes another choice when that 'reservoir' is filled up?Curious.

[HappyMonk in reply to Litatamon]

Great question!

Here I read: "Vitamin B12 therapy has not been linked to ALT elevations or to clinically apparent acute liver injury.

Likelihood score: E (unlikely cause of liver injury)."

Source: ncbi.nlm.nih.gov/books/NBK5...

[Rexz in reply to Litatamon]

Excellent question Litatamon which I've tried to answer myself. In all my research I've found reports that I believe state correctly that once your liver stores are at capacity any remaining B12 is just secreted in your urine. B12 has no toxicity at high levels because it is a water soluble vitamin unlike Iron which your body tightly controls the uptake as too much iron is toxic and not readily disposed of by the body. Additionally, although in some countries there are high levels of the population that are B12 Deficient, other Western Countries have populations that have a diet high in B12 containing foods such as seafood and beef. This population has high levels of B12 liver stores with little known adverse affects.

I must note that I'm certainly not an expert on liver but I have at least made myself comfortable that there is no toxicity.

Best wishes, Rexz

[Litatamon in reply to Rexz]

Thank you Rex. Appreciate it. I am always curious & interested in the mechanisms at hand.

And I have one kidney so try to keep up with that as well.

------------

Thank you jade_s & HappyMonk

[jade_s in reply to Litatamon]

I second (third) this question! I've periodically wondered about it myself. I like HappyMonk & Rexz's answers.

Personal anecdote - after nearly 7 years of 2x daily injections, my liver enzymes are the best they've ever been. Actually they've been good already for several years & they stay good. If excess b12 would harm the liver i'd be dead by now 😂

[WiscGuy in reply to Litatamon]

I believe most of the B12 we inject is carried out of the body in urine.

[wedgewood in reply to HappyMonk]

First of all , you are right , the inabulity to absorb B12 has no impact on the ability to store B12 in the liver . But those stores are of no use to you . You cannot make use of them without Intrinsic Factor. , ,

Also , it is very common for older people to get P.A. - nothing to do with substance abuse — So dont beat yourself up! I got P.A. when I was older - no substance abuse at all .

Getting a diagnosis is not easy because about 50% of P.A. patients get a negative result. Apparently the offending antibodies can appear and disappear in the blood ! Can take several tests to show up positive .

I was lucky -showed up first time . Good luck to you .

[HappyMonk in reply to wedgewood]

Thank you! I was only 38 when my troubles began and at the time I was living life in the fast lane so to speak.

But I am mostly happy I found a solution to my predicament because the symptoms are no joke!

Ah, I see. Also I was reading this morning that taking B12 shots may make it harder to succesfully test for PA.

🙏🏼

[Nackapan in reply to HappyMonk]

I think it can possibly give false positives. That's all.

[WiscGuy in reply to HappyMonk]

I got a positive result to the intrinsic factor antibodies test on my second test, but a note from the lab said the test result was less reliable for someone who was injecting B12. (Sorry, l don't remember the exact wording.)

[Nackapan in reply to WiscGuy]

Frame it !

[jade_s in reply to WiscGuy]

So in an attempt to get even a false positive IFAB test to shove in my doc's face, i've injected an hour before the test and another time the night before (2 different labs) and they were STILL negative 😤

There's a paper - i'd have to look it up on my computer - that compares 5 of the most modern IFAB & GPCAB testing platforms and they are all extremely robust against FPs except one had slightly worse performance. So it seems the latest systems have a very low / almost nonexistent FP rate, but it depends on how recent the lab's protocols/machines are i guess.

[WiscGuy in reply to jade_s]

The way I understand it, they set the bar for positive really high so that a positive result definitely means a positive result. Some things apparently can still skew the results, such as injecting B12, but they are able to print the caution on the report.

[jade_s in reply to WiscGuy]

Yes that's also true.

The one lab where i tested before starting injections , i had a result of '2' where the range is >6. I went back there last year, and injected the night before as i normally do 2x daily, and it was still '2' , same range . Lots of other labs don't even bother giving a level. Anyway now i'm just rambling. 😂

[Nackapan in reply to jade_s]

Yrs I wonder if a survey done just how many tests positive BEFORE b12 injections .What percentage whilst on b12 injections 💉

And those in nomans land but respond clinically to b12 injections, on a b12 rich diet so not dietary.

I've never been tested for IFAB !!

Was given a partial

The very first b12 serum test as very low triggered b12 injection treatment.

Nothing else found to date.

Our old surgery sent out a letter to say if those on b12 injections after a b12 serum test are now ' in range '

And or IFAB negative.

B12 injections would stop immediately.

As high levels toxic .

A blood form was enclosed.

I didn't have the blood test .

Challenged the decision making and decision maker ( never disclosed)

Have kept the letter.

Unbelievable

[jade_s in reply to Nackapan]

Why the hesitancy to test IF i'll never understand. My own doc refused to run it too.

Your story is so shocking every time i read it.

I'm glad you're strong & stubborn enough to keep pushing back. And not just for yourself but your family too!

'High levels toxic' unbelievable! And they're supposed to be trained doctors.

[Nackapan in reply to jade_s]

I hadnt even heard of the IFAB test.It was only when bedbound and desperate with terrible vision problems I managed to find this forum.

To this day I don't know how.

Could only vaguely see the screen as my neuro symptoms so bad every time I put my reading glasses on the room spun???

I put one short message

As no replies sent it again a day later .

Then I got 'told off ' by admin 😐 as perceived impatient.

As run by volunteers and users .

A day is so long when desperately seeking help .

I'm glad I persevered as got alot of help.

That's why I tend to reply quickly if I see a newbie even if I don't have answers.

We collectively have so many 'case studies'

That letter was so wrong with everything .

Surgery has closed now .

[jade_s in reply to Nackapan]

Oh i'm so sorry you had that experience! Very nice of you to do that, we all know how ill people are that end up here are. ❤️

Good riddance to that surgery.

Very glad you're here now !

Perseverence, yes that's the word i was looking for . Well done 🤩

[mcg-woo]

Hello! My maintenance dose is weekly and it has taken years to settle on that schedule. Like you, my symptoms creep back in if I don’t inject weekly. It took some time to deal with this fate but I am just very grateful that I was able to be properly diagnosed, eventually properly treated while not suffering any permanent effects. I will always envy those who can absorb B12 but such is life! Best of luck to you!

[HappyMonk in reply to mcg-woo]

Thank you, I very much share this line of thinking!