B12 deficiency - does anyone know what causes this?

[LateDecemberBackInLowB12]

I am actually very excited about this being discovered.

I had thyroid cancer last year, had a hemithyroidectomy, but been feeling awful since, over the last 8 months the left side of my body has been tingly/numb and I have had nerve pain.

Got sent to physio which didn't help, have an appointment with neuro, but the doctor said she thought my symptoms were a psychological reaction to having cancer.

Saw a different doctor a couple of weeks ago who called me today and told me I was B12 deficient.

I have to go for injections every couple of days for 3 or 4 weeks then go onto folic acid after that.

She did say when I go for my first injection that I need to get a blood test done as it could be a couple of things that have caused the deficiency (rather than the deficiency causing my symptoms) but I was so delighted they actually found something wrong rather than thinking I was making it up, I didn't listen properly and Google is bringing up all sorts of things.

Could anyone tell me their experience of B12 deficiency (and how sore the injections are) or does anyone know what the main things are that could cause ut (definitely not diet related).

Thank you so much.

Pernicious anaemia.

Can be auto immune
Can be the result of bowel damage eg in Crohn's disease

That's damage to the terminal section of the small intestine, so not strictly speaking the bowel.

My b12 deficiency was due to undiagnosed coeliac disease. Since I have stopped eating gluten I have been able to reintroduce dairy into my diet which I previously couldn't eat and I am also now able to absorb b12.

Thank you, I'll go have a Google, I did see the name when I googled but I thought anemia was lack of iron (or am I being really stupid and b12 is iron) I've been anemic a few times and just had iron tablets.

Certain medications such as PPI and anti epileptic drugs can also cause it as can alcohol excess.

Thanks Luna, my sister has coeliac disease, I don't think its that.

My main symptoms are nerve pain, lack of feeling and pins and needles, insomnia but feeling stupidly tired etc.

I hope you're feeling better now.

Thanks dog, I don't really drink and I'm on a few medications but nothing like those. I'll probably spell them wrong but I'm on omeprozol, naproxen, amytriptoline, gabapenton and cocodomol.

If a close family member has Coeliac disease then your chance of also having it is 1in 10 as opposed to 1 in 100. I’m a silent coeliac and was only diagnosed when I developed another autoimmune disease. One of my children has tested and she also has it.
It’s worth asking for the blood test to rule it out

Oh thank you Maid, I've just had a look and I wasn't aware it could be asymptotic at all. I'll definitely ask for that to be tested too.

Omeprazole is a PPI, it can cause B12 deficiency if used long term, as suppression of stomach acid can prevent absorption of some nutrients.

Otherwise as someone else mentions, it could be an autoimmune condition called pernicious anemia. This is when your immune system destroys some cells in your stomach (parietal cells) which are meant to produce something (intrinsic factor) that is needed for absorption of B12. B12 is one of the things needed to make red blood cells, so deficiency can cause anaemia which doesn't respond to iron supplements.

@LateDecemberBackInLowB12

Thank you, I'll go have a Google, I did see the name when I googled but I thought anemia was lack of iron (or am I being really stupid and b12 is iron) I've been anemic a few times and just had iron tablets.

I think pernicious anemia is to do with the lack ability to absorb B12, which red blood cells need. So you end up with deficient red blood cells, ie anemia. My brother has it, and when it gets close to his injection, he's desperate to have it because it makes him feel so much better. I don't think the injections themselves are an issue.

Hi u have Pernicious Anemia so can't absorb b12 from food so I need it injected. It isn't sore at all and I am pretty phobic about needles (getting better though). I get mine every 8 weeks in my bum and my DP does it. My sister gets it too due to her crohns and gets it every 12 week in her arm at the doctors.

I haven't been on omeprozol for long, they said I had to take it with the naproxen because I don't have my gall bladder anymore (had it taken out about 15 years ago), its maybe been 4 or 5 months on that.

Is it worrying that I have to get these injections every 2 days for a month or so? I see it's been said people get ut every 8-12 weeks, so every 2 days seems like a lot.

Thank you so much for all this information. I really appreciate it. I was so shocked and happy when the doctor called that I didn't take everything in.

Ah ok, sounds like it's not the omeprazole then.

The frequent initial injections are a loading dose to get your levels of stored B12 up quickly. After that they shouldn't need to be so frequent.

Do you know what your B12 level was?

I didn't have any typical symptoms of coeliac but the b12 deficiency (my level was 17! So had to have lots of injections.) Was numbness, loss of grip and tingling in hands. Loss of memory and concentration (I couldn't hold a conversation) anxiety and extreme fatigue and aches in muscles.
Before my diagnosis I was misdiagnosed with reflux and dairy intolerance along with IBS. It took 2 years to get right, but after 8 months of no gluten I'm completely back to normal.

I'm not sure what the level was. She just said I was extremely deficient.

Thank you for all the information.

I have B12 deficiency due to having part of my small bowel removed. When it's been extremely low in the past I've had to have jabs every couple of days for a week or so then onto 12 weekly. Always low folic acid so regularly take that too

Omeprazole is definitely a common cause, as it metformin for diabetes. Genuine auto immune pernicious anaemia is quite a rare cause and you should be tested for intrinsic factor antibodies as this diagnostic for PA..

Ok, thanks for the reply. I hope you feel much better soon!

The injections are usually a loading course of 6 injections over 2 weeks then 3 monthly.

The injections every few days are what's known as a 'loading dose'. Most people will have these at the start of their treatment and it's nothing to worry about. Hope you feel better soon.

Thank you for the information.

The doctor has called back today to tell me she has made an emergency referral to neuro now (answer phone message so I couldn't ask why) and then the secretary called not long after to give me an appointment early next week so I'm a bit confused what's happening.

In regards to how sore the injections are I find that having them in the buttocks is almost pain free. In the upper arm I find them quite uncomfortable. Plus the jab site stays sore. But I often find this with injections in my arm.

Thank you.

I have been opting for all bloods etc to be done on my left arm at the moment as its so numb I can't feel anything 🤣 I wasn't sure if it had to be injected somewhere specific.