how long does our b12 injection stay in our bodies

[JesusMercy60]

hello everyone,

Now that I have been diagnosed on my bloodwork with PA I was wondering when we give ourselves an injection of B12 how long do we keep it in our bodies, now I've only been injecting for 6 weeks, this is my 6th week EOD. now I also use liquid sublinguals everyday, I feel I really need it especially on the day of no injection and I have to limit what I do or I feel like I could easily over do it. I am taking all my other vitamins and drinking electrolytes as its over 110 degrees now in the CA desert. It kind of scares me now that I know I have to inject for the rest of my life and for right now i'm still recovering from being deficient for 6 1/2 years that I know of. but it

is getting better with time. especially now that i'm injecting.

thank you for your help

Rosina

[Gambit62 Administrator]

I'm not a biochemist or a medic but the evidence is that it is a bit more complex than just the levels in your blood. Reality seems to be that you need to listen to your body as it when you need to top up your levels etc.

There was a pole, many, many years ago on the forum and that showed people were actually injecting more than once a day.

B12 isn't toxic. If it was injections wouldn't be an appropriate way of treating patients as levels in blood are off the measurable scales.

[GoneWithTheWind1972 in reply to Gambit62]

Hi Gambit62,

My query is why do doctors insist that it is toxic? At a recent haematologist appointment the doctor insisted that I stop my daily B12 SC injections as it could cause damage to my health. He found no other alarming issues but throughout my consultation review he kept focusing on my high serum B12. I persisted with stating that my active B12 is in a healthy range and he should not focus on my serum B12 as this is not a true status of my B12 levels. I’m dumbfounded by this argument, he should no better, he’s a blood specialist!!

I have only my GP and my gastroenterologist who support my current B12 regiment so, I should be thankful for this at least.

[Gambit62 Administrator in reply to GoneWithTheWind1972]

I can't speak for what goes on in the mind of anyone else but the metabolism of B12, particularly in someone who is on injections.

Doctors don't necessarily understand statistics and often confuse correlations with causal effects and the whole culture of 'risk factors' is premised on noticing correlations because very often causal mechanisms aren't identified yet so the correlation is all they have to go on.

There are correlations between high levels of serum B12 and increased rates of cancer. It is certainly true that high levels of B12 result in tumours being larger.

There is also a correlation between high levels of B12 and the symptoms of B12 deficiency (functional B12 deficiency.) The mechanisms for that most definitely aren't understood.

There is a correlation between high levels of B12 and liver/kidney damage - though in those cases the causal factor is more likely to be the liver/kidney damage which either causes dumping of B12 stores (liver) or prevents excessl B12 being removed (kidney).

The thing that people forget is that an injection dumps so much B12 into your blood stream that normal processes for measuring it can't determine levels in a meaningful way. Levels will stay high - hundreds of times the normal range - for weeks on average - in some people it is shorter and in others they can stay high for years. If high levels really were something to worry about as a significant risk factor then why would it be considered an effective treatment.

Also, most GPs just aren't aware that when they look at results they are looking at normal ranges that are based on patients who have not been treated with injections and they just aren't aware that the studies that lead to determining the appropriate treatment periods with injections a) didn't report patients symptoms and b) showed huge ranges in how long B12 was retained - they think hydroxocobolamin is retained for 2 months, get confused with the fact that it amounts to a couple of years worth of B12 stores in liver (a bit of a red herring as the release mechanism relies upon normal absorption which either isn't working or isn't working efficiently). This was the average in some relatively small studies, and as above- there was huge variation in that small sample group - from days up to years.

[GoneWithTheWind1972 in reply to Gambit62]

Thank you so very much for your thorough response Gambit62. This makes a lot of sense. All I can say about my experience is my daily B12 SC injections, I believe, have saved my life. If I had stuck with the recommended treatment of one injection every three months I may not have survived. The suffering of pain and neuropathy, gut problems and many other symptoms to mention here was excruciating. I’m thankful for my persistence in researching Pernicious Anaemia and joining this forum that I began to turn my health around. I taught myself all there is to know about this condition and taught myself to SC inject methylcobalamin and prayed for a miracle. Two years later to today I have turned my health almost to the person I was prior to my diagnosis. I was told by a fill in GP to not hope for a miracle because daily B12 will not cure your neuropathy. But here I am and in a much better place. I now question everything a doctor says to me and request a copy of all my results for all medical tests that are done on me. I’m glad I went against the medical advice as I believe that a higher power intervened somehow. I currently have minimal neuropathy and can walk and do many physical activities. (It still rears its ugly head every so often but, I can live with it now) I will continue with my B12 treatment for the rest of my life and I’m forever grateful and thankful for this forum for the knowledge given to me, it’s been very empowering and enlightening, I value all the support and people who give their time to answer questions from people all over the world. Thank you to everyone.

[Krysagnes in reply to Gambit62]

Hello Gambit,

I'm really confused as to this comment ...

'There is also a correlation between high levels of B12 and the symptoms of B12 deficiency (functional B12 deficiency.) The mechanisms for that most definitely aren't understood.'

How does a person know whether they need to inject more or less? If you feel horrendous (as I currently do) it could be because my B12 is too high - am I correct?

[Gambit62 Administrator in reply to Krysagnes]

High levels of B12 in serum can sometimes prevent B12 getting into cells leading to a functional B12 deficiency. Causal mechanisms are not understood. Frequent injections from anecdotal evidence seem to help.

I don't have an answer to how often someone should inject because there are too many unknowns.

The purpose of my reply to Gonewiththewind was to summarise things that could potentially lead to a medical professional believing that high levels of B12 in serum are dangerous.

[JesusMercy60 in reply to Gambit62]

hello Everyone,

well that opens up a lot of answers for me thank you so much, yes so many variables involved with PA but for now I will try to get better as Im still new to the injections and I will be glad when I get used to them, the wakeup symtoms I still have them getting better and new ones like nausea and headaches at times but I just go lay down till I feel better, my mental emotional being is what gets hard too, but thank our Lord for you all and your support. I'm sure new questions will pop into my head as I'm trying to digest all this.

[bookish in reply to Gambit62]

I'm a bit confused by your first para. Doesn't the serum level increase because of failure of tranport into and between cells, hence the cellular deficiency (one reason for it, anyway)? I hadn't heard that high serum B12 could itself also block that process. High serum from oral supplementation works on symptoms to a point, but nothing like as well as injections. My own experience, not anecdotal.

[Gambit62 Administrator in reply to bookish]

one symptoms of liver/kidney issues (is high serum B12 caused by dumping of liver stores or failure to remove excess B12 in the case of kidney problems. This is unrelated to absorption problems or injections - and in this case it can present with the symptoms of B12 deficiency (known as functional B12 deficiency - mentioned in my first response. The mechanism causing functional B12 deficiency is unclear, as far as I am aware.

[bookish in reply to Gambit62]

Thanks for that, I knew that dumping could raise serum but not that it would also cause or be called functional deficiency. As far as I know, my functional deficiency is at least partly genetic/epigenetic, mainly due to methionine synthase metabolism failings, and there are many related genes/polymorphisms, but it may also be a transcobalamin-2 issue

( pn.bmj.com/content/9/1/37 )

and no doubt there are many other causes, hopefully to be pinned down by CluB12 and others.

[Cherylclaire Forum Support]

R/H column on this page: click on the last heading Topics, click on subheading All things Pernicious Anaemia Society. There is a box there that is titled Polls. Click on the one re injection frequency. All the polls show the question and options given, underneath that there is a box for Results. This will show you how people responded.

The one you are interested in shows a wide variation regarding what frequency of treatment respondents believe they need - almost 900 replies.

[Wheat]

hello, I s.i. as per my symptoms experienced. I was quite ill with physical and neurological symptoms. I found several symptoms were returning in approximately 2 days.

I started 1 x day, then did research. Basically once I increased to 2 x day I started to noticeably heal. Needed to increase to 3.

I believe it 's what your body needs/tells you and symptoms. x

[JesusMercy60 in reply to Wheat]

hello Wheat,

thank you for your post, I have a question if Imay ask, did you have pain as well before you started to receive your injections? I often wonder about myself, I know the pain started a few years ago then went away Im sure because the nerves were dying off then when I started getting the wakeup symptoms it all came back and hopefully after I get used to the injections yes I hope the nerves will heal. thats what I've been reading.

[Wheat in reply to JesusMercy60]

Hello, yes ask away. I had so much happening it's hard to remember, I was hallucinating and at times couldn't speak or walk., peripheral neuropathy.

Everyone is different.

Re. Pain. I had almost constant migraines., headaches , bone pain., pain in hips and down legs, neck and spine pains.

Much has improved now. I am much stronger now, i forget and lift something which before was a struggle now so easy but starts off sciatic, spine, neck, brachial pain. Overall much has improved and im pleased. Just have to keep that in mind at times. 🙂

[JesusMercy60 in reply to Wheat]

hello Wheat,

wow you have overcame a lot, I'm so happy for you. I'm very hopefull in my recovery I 'm early in the injections but have improved a lot I just have to keep that in mind and am very greatfull to our Lord for the improvements.