Symptoms and B12 injection side effects

Allergies, blood and immune system
1

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.

2

Also I am still pale but nowhere near as pale as before, noticed difference in face after a week of loading dose, dark circles are much paler. Appear to look more tanned. Might be increase in red blood cells that darkens skin and tanning better.

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.

3

Pleased to hear that you were finally diagnosed and feeling overall much better.

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.

4

Hi,

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.

5

Hi, thank you very much for this. Diagnosed today and your description of symptoms is identical to mine. I hope to respond to treatment as well as you 😀

6

Hi Lynn. Thanks so very much for your info. I found it very informative. I have only just been diagnosed with PA with a B12 level of 90. I take it that's quite low? 

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!!

7

hi Lynn.

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

8

Ian yes 90 is very low indeed, hope the course of treatment has helped you? Especially for your energy levels in rugby!

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

 

9

Lynn, like you I receive injections but mine are at the moment monthly. I too start going downhill after 2-3 weeks into the jab so I think that is my body telling me I need them every two weeks. It is very difficult to get GP's  to listen. My GP is already talking about reducing my dose - a thought that horrifies me particularly with the kind of work i do. The good news is since my GP put me on Folic acid I have improved but I need more B12 to sustain my body's demands. Incidentally Lynn, I don't know if you are aware but there is a brilliant PA Society on Facebook. It is a brilliant forum. If yuu area it already on it, I strongly recommend it. 

10

hi lynn1000

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

11

Hi from Australia.  Have been struggling for the last three years with diagnosed anaemia (low ferritin, haemoglobin, iron levels), treated with iron infusions.  But over the last few months I have been gradually going down with fatigue, breathlessness, confusion, tiredness etc.  So I had another blood test, and all my iron indicators are normal!  Also my raw B12 level was normal at 180.  But there was another measure called "active B12", which was 29 pmol/L.  This is way below the normal of 35.

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. 

12

hi helen. as far as i understand , for some ppl (probably the minority)the response can be that quickly. so congrats.

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)

13

Caitlin, I am not sure of what the tests were.  The results sheet just shows "Vitamin B12" in pmol/L, and "Active B12" in pmol/L.

Cheers,

Helen

14

thanks Helen.

Caitlin

15

Hello,

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!

16

Hi Caitlin 

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

17

Hi Gemsee

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!

18

hi gemsee. i'm so sorry to hear of ur experience with ur Doc. it's not unusual. there are, however, a few things u can do to get the injections:

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

19

Hi lynn1000

I had my loading injections 4 weeks ago and have suffered with pimples / sandpaper rash on my face, back, shoulders and chest. You said this cleared up after about 6 weeks. But do you get the same reaction after your 2 monthly injections ?

20

Glad to hear you are being treated but not for the side effects. Yes mine only happened with the loading doses as it came on after about second or third injection so I had to get more loading injections in a short space of time knowing my rash would possibly be worse! I got prescribed Duac cream and I do think that helped, cleared up in 6 weeks. Yes I never get spots anymore with injections so hopefully you won't either! You are the only one I have read to experience this too nice to know we aren't alone!

Hopefully yours will clear up and that you feel better soon!