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I thought it was just me

Lis74 profile image
27 Replies

I’m mid loading dose for B12 injections (4) I can’t believe how terrible I feel. I feel 100 times worse than before and I still have 2 to go . They told me I would feel like a new person instead I feel shocking. So exhausted and achy like the flu but not . Weakness in every muscle my fybro has gone into overdrive and I’m in agony. Please tell me this will soon stop .

Sorry for moaning and thanks for reading x

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Lis74 profile image
Lis74
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27 Replies
deniseinmilden profile image
deniseinmilden

They were right and you should feel at least a bit better.

The fact that you don't suggests that something else is wrong and to me it sounds like you have low levels of folate (vitamin B9), potassium and/or magnesium, maybe iron, and possibly vitamin D. All these (and more) are needed by your body to make the B12 work properly and in specific functions of their own.

Because they are used alongside the B12 for repair of damage caused by the deficiency they can easily be used up more quickly if you suddenly get enough B12 and the processes involved go into "overdrive". If you start with low levels then this can cause you to become deficient in these which causes an additional set of symptoms.

It would be good to be tested for these urgently (before you supplement so you get a picture of what is causing the problem and so the results don't get skewed by your supplements) but you should also try to get your levels up a bit before your next jab to stop the problems getting worse.

I suggest you Google each of these to see the effects of deficiency and excess - do you identify with any of things it says - and what dietary sources you might like.

Vegetables for your folate, Brazil nuts, Almonds and other nuts (provided you do not have allergies) for magnesium, and bananas and coconut water for potassium are some things that might help.

A D3 and K2 combined spray is available from health food shops (unless you are taking anticoagulants then only have D3).

Other than that, a broad spectrum multivitamin and mineral supplement plus extra folate is likely to help.

These can be bought easily, and aren't too expensive, from supermarkets as "A-Z Multivitamin and Minerals" and "Folic Acid". The simple ones are as good if not better than expensive branded ones.

I hope you can get all this sorted before anything gets worse and you can feel the benefits of your jabs.

Hopefully soon you will be feeling much better!

Lis74 profile image
Lis74 in reply todeniseinmilden

Thanks for the advice. I was admitted to A and E yesterday morning after nearly collapsing in work. Long story short it turns out that I have an allergic reaction to the injections. In future I think I’ll just take supplements or alternative medicine. I can’t believe I was so unwell. I’m sure I’ll get better soon x

deniseinmilden profile image
deniseinmilden in reply toLis74

I'm so sorry to hear this! I hope you are OK. I also hope you can get enough B12.

If you do have trouble it may be worth putting up more posts on this as I know there are a few people with a similar problem and they have tried different alternatives.

Wishing you improvement ASAP. x

Lis74 profile image
Lis74 in reply todeniseinmilden

Thanks so much xx

sbadd profile image
sbadd

Its been 6 months since my loading doses and im still not right, i wish id never had injections and had just taken a supplement as my body is totally out of whack now, i had horendous side effects head pressure, tingling and numbness, spaced out and walking like a drunk also heart palps and extremely heavy legs, funny because prior to injections only had tiredness, most of this has resolved now but not all so now several referals to specialists and now looking at my thyroid, hope you recover quicker than i did, good luck. Dont want to scare you but this was my experience and everyone is different.

Lis74 profile image
Lis74 in reply tosbadd

Check to see if you have an allergy to it . Turns out that is why I feel so rubbish x

sbadd profile image
sbadd in reply toLis74

Yes i think i may do as before injections i started a supplement and within days started to feel strange, had a recent active b12 test done which is good, my stores were low thats why i was given injections, but had i known what i was about to suffer i would have never had them.

Nef1986 profile image
Nef1986

Hello, so greatful you posted because I feel just the same! 😔

The doctors havnt really explained it to me very well! so most of the info I have is from the internet!

But I can't get over or quite believe how crap I feel!

Dizzy

Burry eyes

Weak and lifeless!

And many more but they are the ones that are stopping me living a normal life!

Out of interest do you have a high prolactin to? They are sending me for scans for that to!

Lis74 profile image
Lis74 in reply toNef1986

Hi I’m exactly the same with the side effects. Turns out I had an allergic reaction to the injections I have been advised by the hospital to stop taking them. How weird I was allergic. Maybe it was the cobalt I don’t know. Xx

Nackapan profile image
Nackapan

I was very ill during first loading dose. The second lot started 6 weeks later I made very good progress. Like you I thought what is going on. I was also told I'd be skipping down the street. Get everything else checked as advised. Don't lose heart as it just may be a rough time because if all the healing.

Lis74 profile image
Lis74

Hi guys

I ended up in A and E yesterday due to being so poorly and nearly collapsing at work . They first thought I had a brain bleed but tests revealed I was having an allergic reaction to B12 injections. That’s why I had been feeling so unwell and so full of cramps weakness and fatigue. Hospital has advised me not to have any more injections. I can’t believe I’m that 1 in a few thousand people who have a reaction. Thanks for all your advice x

sbadd profile image
sbadd in reply toLis74

I ended up at emergency as well but because all my bloods were normal they just sent me home, very frustrating as felt like i was going to collapse as well and could barely stand, nurse at hospital was like " dont think b12 injections would cause this ", ha it was within days of having them, how little they know!

Lis74 profile image
Lis74 in reply tosbadd

I know it’s awful. At 1st they thought I’d had a stroke then a brain bleed . But finally they said yes it’s probably the B12. Hope you feel better soon

sbadd profile image
sbadd

Yes i ended up having ct on brain as the head pressure was so bad i thought something was seriously wrong but was normal, since injections my iron dropped by half and now thyroid gone crazy, and my menstrual cycle has been messed up, never had a problem with any of it before, i swear the injections shocked my body now all other crap going on, slowly getting there but feel this whole year so far has been terrible.

Lis74 profile image
Lis74

I had CT scan too bloods came back normal I think they thought I was somehow faking it . I was so upset and embarrassed. It’s so unusual to be allergic to it so they don’t look for it. They just looked for the brain bleed or stroke.

sbadd profile image
sbadd

Take hospital advice as i was there after 2 injections but went through with the following 4 after that thinking id get better, i just got worse.

Lis74 profile image
Lis74

I’m definitely not having my last 2 injections feeling so bad after the 4th there is no way I’m putting my body or my family through that again. Thanks take care

SouthSounder profile image
SouthSounder

Lis74 - I would be interested to know which form of B12 you were injecting, Methylcobalamin, Cyanocobalamin? 2 others are Hydroxycobalamin and Adenosylcobalamin, though I don't think that last one is used as a supplement. Cyanocobalamin seems the most common injectable, at least in the US, but Methylcobalamin is the non-synthetic form. Not impossible to have an allergic reaction to other content in the injection as well. Did you get any type of reaction at the injection site?

YogiGreg profile image
YogiGreg in reply toSouthSounder

It's a good question SouthSounder ! Here in Australia the standard injections are Hydroxocobalamin which I'm fine with, but can vouch from personal experience of having a very adverse reaction to taking even a sniff of Methylcobalamin or Methylfolate (whether it be by injection or orally). :) Having said that, I did get worse before getting better when starting the loading doses of Hydroxo.

sbadd profile image
sbadd in reply toYogiGreg

Im in Australia too im pretty sure the 1st box i had was hydrox and the second lot i bought were cyan i thought they were all same i just asked for b12 injections at chemist, i will double check as surgery still has some as my daughter gets them 3 monthly, she is fine with them, not me lol

YogiGreg profile image
YogiGreg in reply tosbadd

Oh right...hadn't seen the Cyan injections before, only ever been given hydroxo when asking for them at the chemist. After my reaction to methyl B12, I'm too scared to try anything else other than hydroxo...lol.

sbadd profile image
sbadd in reply toYogiGreg

Yeah im in perth and im pretty sure last lot were cyan my daughter is due shot shortly so when i go ill double check

sbadd profile image
sbadd in reply toYogiGreg

I just followed you i will let you know

YogiGreg profile image
YogiGreg in reply tosbadd

Thanks, the more info sharing the better. I'm on the Gold Coast in Qld

Lis74 profile image
Lis74 in reply toYogiGreg

Hi I was on hydroxo it was awful. I had no redness around the injection site but it was so painful they had to keep switching arms .The muscle pain was immense but the doctor said it was normal.

sbadd profile image
sbadd in reply toYogiGreg

Just update daughter had injection i checked they are hydroxo but im sure 1st ones were cyan

YogiGreg profile image
YogiGreg in reply tosbadd

Ah ok - haven't seen the cyan ones, only hydroxo. They seem to work for me.

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