Symptoms and B12 injection side effects

Posted , 41 users are following.

Hi all,

So finally diagnosed with pernicious anemia after a long time of knowing something wasn't right.

My symptoms over the years were:-

Big toes numb on both feet for a long time - fully investigated at time, they couldn't find a reason.

Cognitive decline in form of memory loss, forgetfulness, confusion, unable to think as quickly. Had a few random periods like this eg can't think of a common word

Freezing cold hands and feet - always thought it was poor circulation- this cleared up within a month after loading does injections

Heavy legs (not fat,) a lot of effort walking - generally thought I was unfit, cleared up after 2 weeks after loading dose- also after each injection on same day my legs felt unbelievably light maybe a bit like jelly. After 2 weeks generally light.

About half an hour after each injection I got shooting pains usually in my feet, hands, then moved on to legs and arms, sometimes just one limb. Prob only lasted about 3 minutes for each one. Felt as if each injection was felt in an area of my body.

Fatigue always complaining and sighing of being tired- many times to the doctors about this one- never got sorted until now. About 2 weeks after loading dose I went for a run, the same distance as before injections, same number of stops, but was not at all out of breath, could talk while running, massive improvement in physical ability in exercise - so was no where near as unfit as I thought I was.

I am now on 2 months after my loading does, my nails have suddenly changed from be dish to very hard, my hair unfortunately is going a bit curly/ wavy at roots, was like this about 15 years ago.

Had bad reaction to b12 injections, had a pimple/sandpaper like rash across forehead and scalp, cleared up after about 6 weeks, was pretty nasty, and I never usually get spots! Used duac cream after 4 weeks that may also have helped.

IBS like stomach problems completely cleared up since injections even slight intolerance to dairy has gone.

Periods have returned to how they used to be a long time ago, always had and been regular but they are much heavier.

My level was 119 when diagnosed, been given hydroxy form of b12.

Never found any with some of my symptoms so thought I would inform others of what to expect with treatment.

6 likes, 79 replies

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  • Posted

    Thanks for the info. I'm at low end of normal 280 amd I think I could benefit from injections.
  • Posted

    For the girls: beware that the contraceptive pill lowers b12 which will worsen symptoms. PPIs such as Omeprazole lowers b12 too
    • Posted

      Ooh, that's interesting, I've been taking Lanzoprazole for years.
  • Posted

    Thank you Lynne and Caitlin for your replies!

    I've done a lot of research and spoke to a doctor again yesterday who agreed that my levels are low and I should have regular b12 injections. He wanted to do another blood test to see what my levels are now and to also check my folate and iron levels. But fingers-crossed I'll be having the injections again soon!

  • Posted

    Hi all. I'm new to this discussion, but I'm wondering what type of doctor is best equipped to diagnose and treat B12 deficiency and/or pernicious anemia. I have been experiencing extreme fatigue, muscle twitching and cramps for months now. I have been to every doctor under the sun and had multiple blood tests, but they never check my vitamin levels. I am a 53 year old female and in menopause and I know that B12 deficiencies can be common at my age.
    • Posted

      hi michelle. your primary health care provider (GP in the UK) should run some serum b12 & folate tests. unfortunately the b12 test done by GP's tend to be unreliable with lots of false positives and false negatives. however, GP's tend to treat (or not treat according to this b12 serum result.

      there is no 'fool proof'/gold star test available to conclusively diagnose b12 deficiency. however, tests such as the Methylmalonic (MMA) blood or urine tests, homocysteine test or and holo transcobalamin (HoloTC) (active b12) are useful adjunctive tests. the best diagnosis is on the symptom picture but Docs tend to over rely on the serum b12 test, despite it's unreliability.

      when in doubt a GP should refer you onto a Consultant Haematologist at the local hospital.

      Caitlin.

  • Posted

    This post has been really helpful.

    I too suffer with some of the symptoms you describe. I always have cold hands and feet, I thought this was down to poor blood circulation and the fact that I never seem to be warm, or that I feel the cold more easily. I too, seem to suffer with cognitive problems, I feel like I've lots the ability to speak sometimes, like I can't get my words out, I know what it is that I want to say, but it just doesn't come out that way, or I forget a word that would describe something. I never used to have problems with this, overtime I've just started to think that maybe I need to slow down and think about what I'm saying. I've joked to people saying that I've got some sort of brain disorder as I cant get my words out, but its turning out to be true, very nearly, by the looks of it. I'm always tired, despite the fact I got to bed at a suitable time for me, and get plnety of sleep. I feel like I can never be bothered, like movement is too much effort, I've recently just started to notice other symptoms, such as tinnitus, pins and needles in hands and feet, or a tingling sensation. 

    My mum has PA and she has to have injections every three months, she has also had her thryoid out so has to take thyroxin every day. 

    I've been to the doctors before about my symptoms and was given a blood test, when they came back it was confirmed that I had a defeciency, but not PA. So, I was given tablets along with folic acid as those level were low too, apparently. But the tablets never improved my symptoms, in my eyes. I stopped taking them, silly thing to do I know, but I assumed that I'd cope, as back then it was just tiredness, my hair was falling out, moodiness. This was back in 2013. Now, I've started experiencing the neurological side of symptoms. 

    So, is it worth me going back to my doctor to be tested? I ask this question as my doctors are very evasive, and they seem to palm me off, despite the fact that I know something isn't right. 

    Any help would be gratefully received. :-)

    • Posted

      And you've had your thyroid tested, too? Yes, do go back for more testing. If your B12 is low again, then there's more to this. Are you a vegetarian/vegan?  Could it be a disorder causing malabsorption? Even if it's not PA, there could be an issue behind your symptoms.

      Good luck!

  • Posted

    Hey,

    I just got diognosed with this Tuesday last week. I already have Ceoliac Disease so I was aware of keeping an eye out on symptoms. I started feeling extremely tired again and overall really crap aha. So I had suspisions that I was low on Iron again. My mum booked me a blood test on the Friday and I got a call on Tuesday saying that my GP wanted to talk to me regarding my blood test but wouldn't tell me why. I went to my Doctor that day and he told me that I have a slight iron deficincy, Vitamin C deficincy and Pernicious Anemia. He began explaining it to me. My level was 8 so I was extremely low. He gave me a list of the syptoms and I think that I was beginning to get some quite extreme symptoms. I always drop things mainly in my right hand as I just let go of what I am holding without noticing untill I hear it hit the ground. This happens mainly at tea time with knives and forks or finger food. I'm extremely weak, get nauseous and dizzy, unbelievably tired, memory loss, and sometimes my brain just feels like it switches off and I say wierd things like once I randomly said somthing about gorillas escaping and didn't realise what I was saying untill I heard someone shouting What? Charlotte?? Then I got extremly confused. At the moment I am currently waiting till my Doctor comes back so that I can have the injections. I can't wait till I start feeling better.

  • Posted

    The pimples are caused by harmful homocysteine being broken down by b12 and detoxifying out the body.
  • Posted

    Hi Lynn,

    You only got the pimples when you got your shots multiple times a week for several weeks? I also mainly had them on my forehead, and also on my chin. In a few months my vitamin b12 levels will be tested again, and if they are too low i will have to get monthly injections for the rest of my life (sorry for the bad english, i'm from the nederlands). I'm really afraid that the pimples will come back, but from your story I understand you dont get spots anymore now?

  • Posted

    I have recently been diagnosed with PA and have just finished my loading injections. I too have broken out in really bad spots around my hairline and on my scalp. They're really sore! I mentioned to the nurse administering the injections but she had never heard of a connection between the two! As someone who had never had a problem with spots it seemed obvious there was a connection!

    I'm feeling amazing since having the shots and I'm just hoping my skin will improve soon!

    So pleased I found this forum. I was feeling so alone with my diagnosis!

    • Posted

      I had my loading injections beginning of the year and broke out with spots all over my back and chest, i was sent to a skin specialist who hadn't heard of this before either !!! they put me on a 6 week course of Doxycycline of which im nearly 5 weeks into. they have certainly subsided but havent gone completely. they have also given me an extra 4 week course for the next time i have my 12 weekly B12 jab to try and keep it at bay.
  • Posted

    Hi, I've just started my 5 injections for B12 after a routine blood test revealed it was very low. I'm not anaemic so they thought it was my stomach so another bloods was done which came back normal, they started me straight away on injections.

    It is strange though as I was feeling very tired, and everything was an effort. I've felt very low with cold hands and feet also my bones ached. I thought it was down to not sleeping well which I haven't done properly since I lost my husband 2 years ago.

    What I wanted to know is there anyone you know who isn't anaemic but has low B12 deficiency. Also does anyone else get a funny headache after the injection and for a short time feel nauseous

    • Posted

      I was not anaemic either. My bone pain turned out to be vit d deficiency. I get 4 weekly b12 injections. Keep your folate levels up as b12 uses folate to travel to your cells. Take daily folic acid to keep folate between 15-20. Your headache etc will be your body adjusting to new level of b12. Expect some pimples on hairline and scalp caused by b12 breaking down harmful homocysteine and it detoxifying from your body.

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