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
ian26438 lynn1000
Posted
holmerush ian26438
Posted
Thanks in anticipation.
Kathy
Blue_dragon holmerush
Posted
It's the pernicious anaemia/B12 deficiency support group. Hope that helps. It's a closed group so will have to wait - but didn't take long for someone to come bk to me.
holmerush Blue_dragon
Posted
Blue_dragon holmerush
Posted
caitlin39841 lynn1000
Posted
congrats. on the birth of your baby. you must be thrilled? hope your getting some uninterrupted nights????
thank you for info. - most helpful.
i didn't fully understand the bit where you said that the ''b12 levels were ''masked'' cos of taking supplements'':
would that be that 'serum' levels showed normal at the expense of 'cell/tissue ' levels?
will have to look up 'active v inactive' levels. it does get involved lol?
i've had low (uncorrected) levels of Ferritin, so hope Doc will do something????
fingers xxxxxxx
with gratitude
Cait
lynn1000 caitlin39841
Posted
Thanks. Yes my daughter sleeps well luckily! So thankful not as tired as used to be!
About the supplements, pernicious anemia doesn't necessarily mean you have zero ability to absorb B12. You may still still be able to absorb a tiny percentage but that on a normal diet isn't enough for your body. I took tablets temporarily before diagnosed that were not 100% RDA but in fact 10,000% RDA or super dose B12. My thought was that if I could absorb 1% of one of these tablets then surely that would mean I would have 100% RDA? So I think this delayed my diagnosis as I only took them for a short while.
Dont know much about active and serum tests sorry..but looks like others may have answered those questions!
Hopefully you will get sorted soon and start to feel better?
Lynn x
helen07952 lynn1000
Posted
On the basisi of this I was given my first ever B12 injection today. Can this work that fast, or is it all psychological? My doctor wants to give me another injection monthly over 3 months to see how I go. I am very hopeful this might turn things around, but we shall see.
caitlin39841 helen07952
Posted
helen could u say what 2 tests u had done: i.e. what were they called:
1) the raw levels test:
2)the active levles test:
with thnaks
C (UK)
helen07952 caitlin39841
Posted
Cheers,
Helen
caitlin39841 helen07952
Posted
Caitlin
gemsee lynn1000
Posted
I'm feeling so confused and frustrated. Around 21 months ago I was diagnosed with b12 deficiency. I was always catching colds that would always linger too long, my glands would swell up and I'd go to the doctor who would always test me for glandular fever which was always negative.
Eventually when I went to the doctor I was tested for b12 levels which were 92. After reading the symptoms of low b12 I thought I must have been low for a long time. I had my loading doses expecting them to make me feel better but they made me feel terrible. About 2 hours after an injection I would be so tired and have palpitatons. I mentioned that to my nurse but she just said "if anything I thought they'd make you feel better". I read online that high doses of b12 can deplete potassium levels so I started eating a banana everyday which definitely helped.
It was a month or 2 after my injections that I suddenly felt so much better. Full of energy and as if I'd had a really really good night's sleep. And all my symptoms had stopped, numb toes, blurry eyes, balance problems, memory problems, etc. As I'm vegetarian my doctor thought I may just not have been eating enough b12 rather than have pernicious anaemia, so I had another blood test, which was negative for pernicious anaemia. So I started taking multi-vitamins and tried to eat more dairy.
It was around 5 months later that I started noticing some symptoms returning but I was worried I was just being parafrustrated so would gradually got worse. I went back to the doctor around a year later for another test. The doctor told me that if I had been diagnosed later I would have automatically been given regular b12 injections. My results were 156 which the doctor said was "normal and the level that we would like everyone to be" she also said I wouldn't experience any symptoms at that level and I felt like she was calling me a hypochondriac.
I moved house so I moved doctors around a month later. I went to my new doctor to discuss my b12, she said I should have been put on regular injections regardless of when I was diagnosed so she said she would test my levels again to see if I would need the loading doses again before having regular injections. I had another test and my levels were 142, she said that she was happy that they were staying around the same level. I know from research on the internet that 142 is still low, so I said that the vitamin tablets I take contain 100% rda and asked if it was worth taking more. She said that I should keep doing what I'm doing because I'm maintaining my levels! So again made me feel like I was a hypochondriac wasting her time.
I don't know what I can do because I feel like my doctors won't listen to me (I hate going to see the doctor anyway as I'm scared they won't believe me).
I thought the low level was under 100, but now you've said it's 150. So if it is 150 then my levels at 142 are below. So why wasn't I given injections???
If anyone can offer advice it would be greatly appreciated!
lynn1000 gemsee
Posted
Sounds like you have had a tough time backwards and forwards to the doctors. Yes your levels looks like they are borderline.
As you are a vegetarian it is more difficult to diagnose because you don't eat B12 in your diet, and your tablets are keeping you around borderline but not increasing? One options could be getting some super dose B12 tablets as a supplement that are much higher than 100% RDA. You can't overdose as it is water soluble and will just be excreted from the body if not needed. Think I got my 10,000 % RDA B12 tablets from Holland and Barrett a long time ago. This should boost it and increase your levels.
Have you always been vegetarian or have symptoms arose since becoming vegetarian? If your tablets are keepng you borderline then I guess not taking some tablets would end you up on b12 injections.
I think because you are vegetarian they may think it is due to your diet and will be less inclined to give you injections despite that you are under 150. Really they should have given you injections as any number under 150 on their system is I think flagged in red as deficient and your supplements aren't keeping you over the limit. Hope you get sorted soon!
caitlin39841 lynn1000
Posted
1)have a look @ NICE guidelines on NHS treatment of b12 deficiency.in the Management section on Pg 6 of that document it says: ''it should be remebered that serum b12 is not always an accurate reflection of deficiency at a cellular level. it is, perhaps for this reason that some patients become symptomatic if the frequency of their injections is reduced , despite having normal b12 serum levels''. u could take this document with u to ur Doc.
2)apparently different GP practices use different Labs to do their blood testing. different Labs., use different (technology)machines to do this. each is calibrated to red flag a low B12 @ different levels according to whatever technology they are using. however, Docs tend to have one number in their heads in respect of normal levels - generally speaking it's 150. the problem arises when different measuring machines (technology) have different levels/numbers in line with own individual machines for normal/abnormal levels. Docs don't always check or factor for this.
3) also NICE r very clear in respect of b12 treatment where neurological symptoms are present. they very clearly suggest that b 12 treatment should be initiated regardless of the serum blood test levels. have a look at the document
all good wishes
C
Jules900 gemsee
Posted
I have been having B12 injections for the past two weeks, 3 injections last week and three this week, my levels were 162 to which one of my Drs said that level was fine yet the other said too low and she has since started me on the course of injections. I have been feeling so tired over the last 18 months to which i was putting it down to the menopause, and since having the injections i have felt so much more energy apart from this week where a cold has come out of no where and a sore throat, guess it was lingering before i had the injections and seems coincidental that its come out now.
I have to have the injections every three months now, but a friend of mine husbands has them monthly and her daughter every two months, i did mention to my nurse last week what if my body needs the injections earlier than 3 monthly, to which she replied that my Dr will not give them any earlier as it is a registered drug, and can only be administered three monthly. So i hoping that my body can last the three months or else i will be flagging till i got my shot of b12 again.
It is best to keep nagging your Dr i know some can make you feel like your making things up, but my b12 has been low for over 18 months and my old Dr didnt even mention it to me, till i moved last year and my new Dr noticed through my records that my B12 was low around 150/160ish, and she asked how i was feeling, i told her tired most of the time, pins and needles in arms and hands alot, and my head a bit weary and not quite focused and forgetful.
She immediately got me booked in the following week for three injections and three this week, and to be honest its working, my energy levels are up and i feel more focused.
So nag your Dr dont give up, my levels were only picked up via a new Dr, and that my old one was blaming the menopause.
Good Luck
Jules
gemsee Jules900
Posted
I think as long as I'm having an injection every 3 months I'll be ok as it was around 4 months after my last loading dose that I started noticing some of my old symptoms returning.
There are plenty of people who need the injection more regularly than 3 months. You should ask to have a blood test just before your injection is due to check your levels. Although there are other reasons you may feel tired. The injections make me feel awful around 4 hours later, so uncredibly tired and can't string a sentence together while my heart is pounding. I found out that high doses of b12 can deplete potassium levels so I've taken to eating a banana every day which are high in potassium. When I first had my loading doses I was given folic acid tablets as my folate levels were low. There is a link between low b12 and folate but I'm not sure how or why. So perhaps try taking some supplements. I take a multi-vitamin with minerals which includes potassium, folic acid and b12 among others.
Although you know your body better than anyone so if you think you need injections more often then just keep pestering your doctor or ask to see a specialist.
Jules900 gemsee
Posted
I may try the banana routine and have one daily, i had my injection yesterday and i thought it was just me feeling rubbish after, i feel quite drained and my head a weary a few hours later, i cooked tea had a shower and took myself off to bed early. Woke up this morning and feel more refreshed, i am due again for another shot of B12 in three months like yourself ,and i am hoping i can get that far before flagging again.
I may buy some folic acid tablets as i remember my Dr saying my folic acid levels were borderline, so if it gives me a little more boost so i can get myself of the gym again and feel more human than i shall buy some.
thanks for the reply and i shall try the banana eating each day.
Jules
holmerush Jules900
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lyn64198 gemsee
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