B12 Injection Side Effects

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Hi All,

I have recently been diagnosed with B12 deficiency and commenced my loading dose injections yesterday. After 9 months of feeling completely not myself, test for all sorts of different things plus fighting the " your symptoms are anxiety" card I was finally diagnosed with Coelliac disease and the the B12.

My symptoms are headaches, sensitive eyes, strange smells, metalic taste in my mouth, severe neck ache, a hard to discribe numb feeling in my chest, pins and needs in my hands (mainly left) numbness in my 4th toe (also left sided), weak heavy leg feeling like I'm about to faint,difficulty stringing a sentance together, forgetting memorable words, losing track of what I'm saying mid conversation, clumsy hands and poor spacial awareness (always hiting my hands on things) cold hands and feet, dizziness and ppor balance...the list goes on..

I had my first B12 jab yesterday and today I am feeling terrible. I feel dizzy, sick, really cold hands, numbness in my hands and a very spaced out almost migrainey type feeling. I can't concentrate and keep forgetting what I am talking about. Basically by pervious B12 deifciency symptoms just mych more intense. I'm currently struggling through a day at work and could really do with some peice of mind that this is normal and other people have felt like this?

I'm hoping it wears off soon and I dont experience it every time after my next 5 injections sad

Thank you for any comments smile Jen

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  • Posted

    Have you had your folate and ferritin check as they all work together
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    • Posted

      Thank you smile My Folate was okay, as was iron, Calcium and Vit D, its just B12 and Magernese (not sure how its spelt) that were low.
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  • Posted

    Hi Jen

    I feel for you

    I too felt worse at first. Some patients do feel worse before they get better.

    I learnt a lot about this condition on the Facebook pernicious anemia/b12 deficiency group.

    I was diagnosed in November with a huge list of symptoms and am still struggling on a day to day basis. I keep a diary of my symptoms and take other vitamins and minerals such as folic acid, iron+vitamin c and eat potassium rich foods. I now see improvement in some of my symptoms for a while but I quickly go back to how I originally felt if I have something like a headache or have missed a vitamin.

    I hope this helps

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    • Posted

      Hi Annette, thats really helpful, thank you. Glad to know I'm not alone, although I'm sorry that you have been struggling too. I think I had the idea in my head that I'd wake up this morning full of energy and feeling great after the jab when the reality was I slept terrible and feel worse. I have bought a suppliment that has these vitamins in also and a B12 spray that I will start using after my initial jabs have finished next week. Hoping this will help keep me topped up before my next jab in 3 months then. Did you find the jabs helped after the feeling worse part? Hope the feeling worse didnt last too long smile
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    • Posted

      Hi Jen

      For me it took until the last jab until I felt better . Since then it has been a real roller coaster ride. But back then I did not realise how the vitamins work together and was only taking folic acid. It seems it will be a while yet until I will feel 100%.

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  • Posted

    Hi

    I do recognise some of those symptoms but previous to being diagnosed I had a Thyroiditis and a bang on the head thru a collapse (now have pacemaker). Also I was severely iron dificient. I too suggest you make sure your iron levels are ok and also maybe ask for your throid functions to be checked if you havent had that done.  Some of those symptoms you mention also track to thyroid issues.

    Good luck

    Deb

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    • Posted

      Hi Deb, I've had my iron levels checked and its okay and my thyroid is under investigation. I had an overactive reading back in December and then when they re-tested 2 weeks later it had gone back down to just within a normal range top end so they didnt follow it up. I have just had another test for it last week as the classic overactive symptoms were back so will see how that one comes back. Thank you for the advice smile
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  • Posted

    Hugs to you, Jen!

    Your body is damaged and will likely feel worse before you're all better. I have low B12 but not CD, and my son is the reverse. I wouldn't want either and I feel for you with both... As mentioned already, CD can go with other conditions such as thyroid, PA (low b12 can be fixed, PA requires ongoing supplements/treatment), even type 1 diabetes and other auto-immune conditions.

    You have neuropathy, which means nerve damage. Some or all of it can be reversed and that's the good news. But, it feels equally bad while that happens (my experience, too) or maybe worse. I think the damage takes longer than the healing, maybe? So, it's more noticable?  But wait until you can feel all ten fingers and ten toes again, without weird sensations! smile

    And, your gut is healing too. That will take a good six months to one year - even longer in some. Doctors are now calling the gut "the second brain" so you can imagine all that goes wrong when your villi are decimated and your gut is broken down like it is in those with CD.

    With either of those alone, your mood could be affected, your balance, memory, nerves, hearing, etc. You have both. It will take time but one year from now you will be soooo sosososo much better! Probably less than that! Stick to a very very strict GF diet. When in doubt, don't eat it. Skip dairy for now, or take lactase supplements. BE CAREFUL with any supplement/vitamin you take! B12 tablets, probiotics, etc. can all "gluten" you and stall your healing while making your worse, not better. 

    Brace  yourself for the worst right now, but know that each jab and each GF day is making you better! There is a light at the end of the tunnel!  My son was a different person within 4 months (had 2nd worst category of villus atrophy so he was young but far gone at age 6!), and I could tell he was really healing at six months. Everyone's different, but it is a rollercoaster ride and what you're saying is "normal" for either or both conditions.

    Best wishes!

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    • Posted

      Thank you Aveline!! My mood is definitely affected haha I've always been very healthy up until August last year and finding it quite difficult that I am out of control of my body and what it's doing. Its difficult to keep positive but your advice has really helped thank you. It really helps hearing about other peoples journeys. Stops me losing hope and makes me feel more "normal" about how I'm feeling. I'm really working hard on the gf even down to watching contamination and am hoping that once the B12 jabs are done end of next week I will start to feel a bit better. Just small progress would be nice. Did you have the jabs for your B12? And if so how did you find them? I wasn't expecting my symptoms to feels worse today after it and am now a bit nervous about how I'm going to feel after tomorrow and the next 4! I suppose everyone is different.

      Thanks so much for your message smile

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    • Posted

      What a good reminder, Jen - anyone new to this is going to also mourn their former good health. (You'll be healthy again, this is no death sentence!)  You'll find yourself in some of the stages of grief through all of this, too. Many won't understand and they can't. Stick to forums and FB groups and the like to vent when you need that. You were a healthy child and a healthy adult until suddenly you weren't. Then you were "crazy" and then you were told you are sick,and here's what it is and now here's a BIG lifestyle change pill to swallow to make it all better.

      So, don't be surprised if you mourn the loss of that identity as a "healthy person" for a while and resent the new diet and socially withdraw as you figure out the ways to get your life back and stay GF.  All the while, grateful that you're not "crazy" and there is help and you're healing. Again, in my case, it's my son. My sister feels like I complain too much, but she's not in our shoes and she wants sympathy-likes on FB if she's got a hangnail. People may lose patience as you sort it all out, but take all the time you need to stay well.

      You'll likely feel rubbish for the next few jabs. I was upset b/c when I returned after the first the nurse thought I'd feel cured. (And all I have is the low B12) Didn't work like that for me! I felt better overall each week, but my symptoms still ebbed and flowed for a while. Looking here on the PA forums is good, too! That was big for me, and it's how I found this site in the first place (I'm in the US). If you were a recovering alcholic, you'd have withdrawl symptoms, right?  I suppose this is similar as your body repairs itself...

      I hope it's not hard for you with every jab! I can't say since your gut is healing at the same time...But as someone who had a rollercoaster in a smaller way, I can tell you that B12 is your friend and you will feel better smile

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    • Posted

      Your words have litterally got me through the day, its been a tough one, thank you so much!!! I definitely think these forums will help, its so nice to speak to people in similar situations who are honest about their journey. My family are great and really help but obviously its difficult for them to relate because they dont feel how I feel (thank god lol)

      I feel like I can set myself a realistic expectation for my treatment now. I tend to get over excited at the thought of feeling better which then makes the disappintment when it doesnt happen much worse.

      You are so right about mourning my healthy self, i never looked at it like that before, i do miss her at the moment haha

      Thanks again so much for taking the time to reply to me!! It really means a lot that people are so helpful, it really does make a difference in all of this.

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    • Posted

      Ive just been diagnosed with low vit b12 and on my second of 5 loading dose injections and it is making me feel very yucky .

      Felt very dizzy and sick from around 20 mins after having the jab and then just extreame exhustion. So me to currentley struggling to make it through the day.

      Im glad ive read your story as thought it was in me being odd and i didnt expect to feel more poorly than I did to begin with.

      I hope you are feeling better now and things are starting to settle down for you x x x

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    • Posted

      Sorry to hear you've been so poorly!! But you most definitely arent alone!! I felt so so horrible after mine but am now finally starting to feel more "normal" again. At the time i felt like it was never going to end but hang in there and It will definitely get better (when people said this to me before I almost couldnt believe it but here I am) my doctor told me that everyone takes different amounts of time to feel better and that I needed more time and seems like he was right. Reading these forums really helped me get through it!! I hope you feel better soon x
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