What does SI hydroxy cobalamin every ... - Pernicious Anaemi...

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What does SI hydroxy cobalamin every other day deplete in the body. If at all?

WorkingProgress profile image
17 Replies

Hi guys when I take my shot I am fine for about 3 to 4 hours then anxiety,elevated pulse,sweaty,elevated body temperature and generally feel like hell. I am still bed ridden after 1 month even though slightly improved. I know there is something else going on besides low B12 but am still awaiting the nurses visit to draw blood. This has been delayed due to covid even though I have paid privately for a full comprehensive panel.

Also just started iron bisglycinate 20mg yesterday this too made me feel drowsy and certainly constipated me somewhat. I am microcytic too but never suffered any symptoms until 2 months ago and banging on again at my Gp's door is a no go.

Any thoughts on this.

Kindest regards

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WorkingProgress
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17 Replies
Nackapan profile image
Nackapan

I initially was bed bound. I coukdnt believe all down to b12 deficiency.

Nothing else has been found !

It took from October to January to at first feel worse then start to get walking again.

Too many symptoms to go in to.

So keep going and treat the worsening symptoms as your nerves waking up.

It is very difficult.

Meanwhile have every test you can to rule out anything else going on.

Keep a diary.

Eat and drink lots of water.

Hope improvements start soon.

WorkingProgress profile image
WorkingProgress in reply to Nackapan

Thank you so much for that reassurance. I don't suffer with any nerve damage just extreme fatigue,barely just making it to the bathroom to clean myself and get back into bed. then my hear beats a lot faster till I settle. I am microcytic and have low serum b12 too. I may also be microcytic annaemic. I have ordered a electrophoresis haemoglobin test to find out my exact thallassaemia trait and a comprehensive full panel test to see what's what. If you have any others suggestions for tests I should get done I would be extremely grateful. I get my bloods through medichecks.

fbirder profile image
fbirder

Injecting B12 depletes nothing at all, except for the things it is supposed to deplete - methylmalonic acid and homocysteine.

Think of your body as a car. It has an oil (B12) leak which requires frequent topping up. But, no matter how much oil you put into the car, you don't need to increase the frequency at which you refill with petrol, windscreen washer, brake fluid, etc.

WorkingProgress profile image
WorkingProgress in reply to fbirder

Got it. Thank you for that great way of putting it. I understand. I will find my way around this one day and get back to some sort of normality. I have zero energy barely just making it to the bathroom to clean myself then back to bed thank God my brother is cooking extremely nutritious meals.

fbirder profile image
fbirder

Some people think that it uses up folic acid, because folate is also involved in one of the reactions that B12 takes part in. That's wrong.

This reaction involves the transfer of a methyl group from methyltetrahydrofolate to homocysteine, producing tetrahydrofolate and methionine. B12 is involved because the methyl group is first passed to cob(II)alamin, which then passes it on to the hCys. And cob(II)alamin is derived from B12.

First fact is - the body runs this reaction as often as it needs to do to keep hCys levels low. Adding loads more B12 cannot make it run more often, because there will be no hCys for the reaction to use.

Second fact is - the tetrahydrofolate that is produced isn't lost. It is converted back into methyltetrahydrofolate, ready to enter the reaction again. So, even if adding B12 made the reaction run more often, it would just mean that the folate molecules go around that cycle faster.

Increasing the amount of B12 in the body cannot possibly use up folate.

The Folate Cycle, and its interaction with B12
WorkingProgress profile image
WorkingProgress in reply to fbirder

I owe you some chocolates or something for your knowledge and help. We all do. Thank you again.Are based up north or down south like me

fbirder profile image
fbirder in reply to WorkingProgress

I'm so far South I can walk to the sea (although it'd take me an hour).

WorkingProgress profile image
WorkingProgress in reply to fbirder

Lovely stuff I am just north of London . Not walking anywhere for a while can't handle it. I used to be so active.

WorkingProgress profile image
WorkingProgress in reply to fbirder

Ok..... so if the body absorbs so little of the 1000mcg hydroxy shot from what I read about 10mcg (And again i may well be wrong), why don't we all just use say 100mcg ampules and maybe minimise any side effects or the need for the body to pee out so much more. Does the body also recycle B12?

Or am I just imagining that as some can last a month inbetween shots and others barely a day.

Kindest regards

Mr fbirder you are the man!

helvella profile image
helvella in reply to WorkingProgress

Could you be confusing absorption of oral B12 with injected B12?

About 10 micrograms of an oral dose of 1000 micrograms of B12 is as much as anyone is likely to absorb.

But the word "absorb" there means transfer from gut to bloodstream.

If you are injecting, that stage of "absorb" is avoided.

WorkingProgress profile image
WorkingProgress in reply to helvella

I could be wrong but I was pretty sure it was injected B12 but do not take my word on it Mr fbirder is the man who most certainly will know.

Gambit62 profile image
Gambit62Administrator in reply to WorkingProgress

WorkingProgress 100% of an injection is absorbed into the blood. Getting B12 into the blood is the step that is broken in B12 and absorption problems - but there are other steps that the B12 has to go through before it actually gets into your cells which is where it is used. Most of the B12 that gets into your blood won't get bound to the proteins that enable it to get into the cells where it is used - so most of it ends up being removed eg by the kidneys and passing out of the body in urine - but how quickly this happens varies from person to person though it averages 2 months with hydroxocobalamin and one month with cyanocobalamin.

I don't think there are any established figures for the average transfer from blood to cells and the amount that is actually used up in cells is really very small - a lot of the processes that go on in cells just need B12 to be present.

WorkingProgress profile image
WorkingProgress in reply to Gambit62

Thank you very much indeed for that awesome clarification. I am still learning and am enjoying the process but not the symptoms or my Gp's attitude. I guess we all have our own individual struggles and it's a continuous working process until hopefully one day after much refining things can get easier until the body changes on you again.

Parlay profile image
Parlay

Gosh how awful for you. As fbirder said so eloquently hydroxycobalamin doesn't deplete anything at all however it does work alongside things. So I found out the hard way when when I got hypokalaemia (low potassium) that it’s so so important to get in a large amount of potassium rich foods. (Not safe in supplement form) I get totally disillusioned with my gp so saw a functional dr and found that when I kept a food diary I was able to identify gluten was not my friend at all (silent coeliac) and that to be healthy I needed 130 grams of protein a day plus wholefood sources of all vitamins and minerals. I had macrocytic anaemia, all my levels were tanked so it took a while but uk getting there. I’m not running a marathon or anything but I’ll up and about. I took undefatted dedicated beef liver pills for my iron as they also contain other essentials. CFS can also be the bodies way of responding to chronic stress so all the wholefood supplements plus some mindfulness and really gentle yoga which you can do on the bedroom floor, just start off simple and build up. Good luck in your healing journey.

WorkingProgress profile image
WorkingProgress in reply to Parlay

Thank you for that wonderful response. My bloods all came back low but because the nhs write no further action needed..... that was it..... doors shut. I am microcytic and still I bed but adjusting diet well and taking in what is needed.

I have just started taking in gentle iron 20mg bisglycinate every day and using astralagus, coenzymeq10, probiotic/enzyme, spirulina, vit C, to heal the whole body and not just B12... B12 is simply one part of it alongside a holistic approach. I shall be eating more liver too. I was thinking about dedicated liver supplements too and can you suggested decent brand. A lot seem to be de-fatted. Is there a difference?

Thank you again for your wonderful message and hopefully better days will be here in the up coming months.

Capri2020 profile image
Capri2020 in reply to WorkingProgress

I can recommend the Ancestral Supplements, available on Amazon. You can email them first and Brian who founded the company will advise you, he's very knowledgeable. Wish you well 🌸

MrsTuft profile image
MrsTuft in reply to Parlay

which wholefood vits do you use?

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