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
lynn1000
Posted
Weight stayed the same seem to be more hungry though.
Will keep updated with any new changes. It has now been nearly 2 month since loading dose. Waiting to see if I will know when need next injections or will get at 3 months if not.
Not sure if this info will be much help but it would have been useful for me to know if these things are normal as some changes have been unpredicted.
Kos
Posted
Could you please tell me which particular tests lead to the diagnosis? I am in the processing of having tests as feeling to the point of collapse at times with symptoms typical of pernicious anemia. My blood tests state my vitamin B12 is within the normal range and the doctors don't seem to listen whey I steer them to the fact my Mother was diagnosed with pernicious anemia years ago after becoming gravely ill and tests that failed for 7 months to diagnose her.
I would be most grateful to know how you were diagnosed?
Thank you for sharing your experience, it does indeed help myself and others I'm sure.
debbie42205 Kos
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zylstra Kos
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lynn1000
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Sorry to hear you haven't been well.
Yes I also had trouble getting it diagnosed. For the past 10 years I went to the doctors for some of problems given above mostly tiredness. I am pretty sure they had done numerous b12 tests that never showed up deficient under 150. not sure what levels were. It's worth noting that although the deficiency is supposed to be under 150, people believe it should be increased to maybe 400. Another reason I believe I didn't get diagnosed was because I took some super dose b12 tablets each 10000 x RDA when I suspected it could be b12 through my own research. Even if I can absorb say 1% of a tablet that is still about 100% RDA from one tablet that prob masked my tests and therefore diagnosis. I guess that's the problem with self treating. Also I was borderline deficient just over for folic acid, I read this also helps metabolise b12 so been taking that too.
An I forgot to point out my symptom that got me diagnosed my hands were shaking non stop for 2 weeks and it wouldn't stop that's why I got tested.
It does run in families so could be good chance you have PA. you could either avoid all possible supplements and wait few month to year for it to drop really bad so you have symptoms they can diagnose. Or take your own b12 and folic to enhance it and risk it never being diagnosed. What level is your B12? Are you low but over threshold? Plus everyone is different. What other symptoms do you have? What is your folic acid level? I am not sure if they can diagnose it without a b12 test. However I have heard there is a test that can measure active b12 which would always be less than a typical b12 test, ie you could be in normal range but on this test you would be classed as deficient. Therefore not sure how accurate the b12 test is anyway.
Hope that you are ok. Don't give up hope.
stephanie15152 lynn1000
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cheryl662291 lynn1000
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ian26438 lynn1000
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start my coirse of jabs tomorrow and it can't come quick enough. I am an active 52 year old and still play rugby so I just hate feeling the way I do and is quite inconvenient to say the least as I just don't have time to be unwell!!
caitlin39841 lynn1000
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just read your post. you must be delighted to have such as fast response. well done you?
1)could you say what your B12 levels were if you were tested?
2)are you self-injecting?
3)how long do you expect to be on the injections?
i ask cos i have of similar but more severe symptoms & Doc's not interested????
Catilin
lynn1000 caitlin39841
Posted
Caitlin I don't know what my levels are now it was 119 when diagnosed, though I am getting my injections every 2 months, but I am getting small symptoms sometimes now before the 2 months eg tiredness and weird skin sensations. Though I have just had a healthy baby 3 month ago so prob used all my B12 stores...We had been tryin a while and I conceived few months after treatment!
I get my injections at the GPs, don't think I could self inject!
I will be getting injections for life every 2 months.
Is there anyway you can get tested for your levels at the doctors?
The guidelines they have for limits should be higher as some people get symptoms over the limit, everyone is different I guess!What are your symptoms? Folic deficiency can cause B12 deficiency too so worth trying those too! x
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lyn64198 lynn1000
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lynn1000 lyn64198
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lyn64198 lynn1000
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lynn1000 lyn64198
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I always thought it was linked to my B12 as don't get it now. Maybe once or twice in past 2 years. Well it should improve for you too? I guess it's a sign of very low B12 as neurological. I actually got it  mostly under my thigh which made sitting down awkward and extremely sensitive to hot and cold temps! Good luck with your injections. Taking iron intermittently too also helps with tiredness as nearly always borderline anaemic.
lyn64198 lynn1000
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