B12 shots: Hi Just a quick question... - Pernicious Anaemi...

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B12 shots

LuluCops profile image
10 Replies

Hi

Just a quick question. Does anyone else take their B12 injections daily?

I started mine as daily just for a week as I felt so ill that I thought a week of loading doses would get my levels up quicker. Since going down to every other day though, I feel crap and really ill again.

I’m seriously thinking of doing them daily again, I’m sure I’ve read on here before that there are those that do, so them daily??

Thanks

Shelley xx

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LuluCops profile image
LuluCops
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10 Replies

I inject daily, sometimes twice if I do things like go to the gym, for a cycle, or have a particularly stressful day, and sometimes just because I have a glass of wine ;)

The Good Thing about self-injecting is you inject as and when you feel you need it, there is no known upper limit for this water-soluble vitamin.

I do ensure I keep my folate levels up accordingly, although views on that differ depending on the forum you post so I have my preference and keep to that.

As far as a reason why, it is my belief that I have a particular gene mutation which means my B12 is not recycled properly which I get from my father who has a history of low B12, and I have another gene mutation from both parents which means my methylation of B12 can be reduced quite a lot if I don’t keep things like grains out of my diet. I got my gene info from the raw data supplied by a 23andme test and used free sites like GeneticGenie and Nutrahacker to find out summary info on the main SNPs of interest.

Everyone is different, you find your own levels - some don’t need it for months, some multiple times a day.

LuluCops profile image
LuluCops in reply to

Thank you oddb0d! It had actually crossed my mind that I could’ve done with another one today as I had a hospital appointment with my daughter and the walk from the car to the clinic really wiped me out, but I’d already taken 1000mg this morning. It’s the pain and the bone aching tiredness I can’t shake at the moment! And the irritability- oh wow, sometimes the kids daren’t talk to me 😆

It was starting to get better, but as soon as I dropped to every other day, I started feeling like crap again!!

Thank you for reading xx

in reply toLuluCops

Just be aware that it’s not /always/ B12 to blame, you could be low on other stuff too, for example iron deficiency is similar in symptoms. I’ve learned a lot in the last couple of years and gone from not being able to stand up to losing 5 stone in the last 10 months by cutting out the grains and one of the things I’ve learned is when I come out of the gym - which I haven’t done for a couple of weeks now as I managed to crack a rib there lol my bull in china shop approach strikes again - is I have a craving for red meat and that is a big sign I’ve burned through my B12.

LuluCops profile image
LuluCops in reply to

I’m fast learning a lot these days, thanks to being diagnosed with Autoimmune Thyroiditis, Addisons and then B12d all within 3 years!! To say it’s been one hell of a steep learning curve would be an understatement!!

At the moment I can’t function past about this time of afternoon, Saturday, hubby struggled to wake me in the morning, took him a good hour, he finally got me up and we went to Asda shopping as per our usual routine (I use a scooter as I can’t walk far)

By the time we got home I could barely stay awake or string a sentence together, I crashed out on the sofa, woke around 4, daughter sent me to bed where I stayed until yesterday morning and was back in bed by 16.30! Again today, I’m struggling now to stay awake and I’m in so much pain I just want to go and lie down, I know if I do, I’ll fall asleep within the hour!

I’ve had my vitamins and all tested, Folate, ferritin, Vit D, B12 all low, I’m now on GP supplements for Folic Acid, B12 and Vit D, the only ones I actually take are the Vit D ones as I was only offered Cyano tablets for B12, and folic acid for Folate. I supplement with the BetterYou sprays for Vit D & K2, B12 and I’m waiting for the Folate supplement to arrive, I can’t recall top of my head what it is called! 🤷🏻‍♀️🤦🏻‍♀️

I thought it was me just being a carnivore lol, I’m constantly craving red meat!! Every time we go shopping, or hubby goes, I’m always getting beef, steak or mince!! Usually a nice piece of steak! 🥩 never thought to put it to B12 status!! xx

in reply toLuluCops

LOL yeah I thought for many years I was just an ace beef chilli maker until I discovered it was just my crappy body craving B12 ;)

A big area I discovered on my journey when I was in that awake for hardly any hours a day thing was amino acids / powders from BulkPowders.co.uk - I discovered that because our guts aren’t working properly then stuff doesn’t get to the brain very well - this was all before I discovered ADHD and I think all these things are linked but highly recommend finding out more about amino acids, I ended up making daily shakes with about 30 different ones in each and they helped me through the worst bits. I don’t need them so much now but do have a shake before I go to the gym now, more of a performance/alertness improvement thing than a OMG I’m asleep most of the day thing.

LuluCops profile image
LuluCops in reply to

That’s actually worth a look into, are there any that you would recommend? My hubby is into his bodybuilding and weights and he’ll know a bit about amino acids but it would be great to get a first hand experience of what may work for us! B12 and PA run in my family, down my grandads (he has PA) side and gut problems too, neither he nor my mum have what you call ‘normal’ stomachs, my grandad has had so many surgeries on his digestive system he has a permanently bloated stomach and looks pregnant 24/7, a bit like mine right now! And my Mum has lost soooo much weight because of her issues, at one point my Dad and I were begging her to go back to her consultants get something done because she seriously looked like she was in the last stages of cancer! And that’s is such a horrible thing to say but we hadn’t long lost her sister (my Aunty) to liver cancer, and Dad and I were terrified that we were going to lose her too!! Now they’ve got her on some high calorie meal supplements and her body seems to be tolerating these well so fingers crossed!! It started off as a sphincter replacement on her stomach ( she couldn’t keep anything down) and then we found out that her oesophageal tract had paralysis on the one half the whole way down and wasn’t moving food along to the stomach so she’s on a pretty much liquid only or soft food diet now 🥺🥺 I feel so sorry for her as she has gone through so much already, it’s like she can’t catch a break. She’s only 58 but she lost her older brother the year he turned 50, from mouth and throat cancer, and then lost her younger sister 2 years ago this year. She’s the middle child but the last surviving and she feels so guilty. Especially as she lives so far away from us because of my Dads work. Sorry I was rambling. I guess I’m just more worried about all this absorption issues than I thought. 🥺

Thank you for replying

Shelley xx

in reply toLuluCops

It took me months of googling etc to finalise my list so don’t just blindly copy as each does different things so without knowing what it can make you more tired, over methylate, etc.!

L-Theanine

DMAE

N Acetyl L Tyrosine

Acetyl-L-Carnitine (ALCAR)

N-Acetyl L-Cysteine (NAC)

DL Phenylalanine

L-Glutamine

Grape Seed Extract

Branched Chain Amino Acids

Choline Birtrate

Glucuronolactone

Beta Alanine

Inositol

L-Arginine

Citrulline Malate

Creatine Monohydrate

Glycine

L-Lysine

Histidine

Taurine

Trimethylglycine (TMG)

D-Ribose

Your family sounds a little like mine ;) My father started to have leg issues and flappy feet when walking - docs tried to put him on some meds which he googled and didn’t like the sound of the side effects but over the last year I managed to get him his loading doses from the docs by getting his B12 tested, putting him on B12 tablets and showing the doc that even though his levels were rising the symptoms were still getting worse. They of course didn’t follow on with alternate day injections so I did, he learned how to do it himself and has now been self injecting for a couple of months and looks about ten years younger along with his feet not flapping any more and he said he did 5 miles waking last week at his weekly walk with his old workmates, they usually do about 3. He’s 82. I think a lot of that is diet too, they put him on tablets for high blood pressure when he was in his 30s but I suspect it was just B12 issues - his diet was lots of dairy and gluten, I managed to get him to cut down the dairy and that’s helped.

Now I’ve been staying with my mother for just over a month as she’s currently housebound with bad leg ulcers from chemo back in Jan so I’ve been doing the shopping cooking etc. She’s totally ADHD so I see where I get it from lol. It’s tiring but managed to get her off the grains onto Dr Osborne’s No Grain No Pain diet like I’m on and the nurses are already saying how much her ulcers have improved. Her memory is pretty shot now though so I’m not sure if that’ll improve - managed to finally get her to do the injections last Friday and daily since then - had to get my dad to drive over and give us a lift to the A&E so we could sit outside as she was worried about anaphylactic shock but all was fine. She’s 78 and really thin, 8 stone. A whole history of misdiagnosis, from migraines to Parkinson’s - I see it so clearly now so hope the injections will work, would like to get back on with my life at some point soon lol - 47 and been living in my elderly parent’s spare rooms for three years now since I ended up ill and not knowing why. I use to pass out for no reason as a kid, they sent me for brain scans etc. - all just diet related I reckon, wish I’d known earlier in life but glad at least I know now so can deal with it.

Mum has been the hardest though, her B12 serum and active are both high and MMA and homocysteine OK so it’s there and it gets round the body but no test says whether it gets caught up in massive roadworks on the way round :( I am reminded of the news story about this guy who died in South London and was found mummified and they didn’t know why - the news story said he was on B12 tablets but didn’t think that was the cause whereas I believe he should’ve been on injections. Such a horrible thing this B12 deficiency - glad I have my ADHD super focus and managed to fix myself and hopefully help my family a bit!

Ramble ramble ;)

LuluCops profile image
LuluCops in reply to

It’s not rambling if it’s relevant, that’s what I say/ think anyway lol. Probably get that from my grandad! I think he could probably do with his injections being closer together. But I don’t live close enough to him anymore to do anything about it 🥺

I’ll show my hubby this list and see what he says. I think because of my thyroid, I won’t be able to take the tyrosine, I’m not sure on the rest though xx

in reply toLuluCops

The bulkpowders.co.uk site has lots of info and reviews on each one, I just sifted through those.

LuluCops profile image
LuluCops in reply to

Brilliant, thank you, I’ll have a look xx

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