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Pernicious Anaemia Society
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B12 INJECTIONS

On Wednesday I finish my dosage of 5 injections of B12 over 10 days. My blood results showed 112 ng/l (145-914) so basically low.

I was fully committed to the injections but on the 3rd injection and from then onwards to this day I feel absolutely "shot to pieces". tingling fingers, extreme fatigue sickness, flu like sysmptons, aches and pains loss of appetite and tireness you would not believe. before this I did feel tired and felt like I was treading water when walking which is why I had a blood tests. Have been reading so many comments and also about the side affects - never dreamt I would have this many. Have told my surgery who have said that I am the first one she has met who has been this bad. I will need them every 3 months for life I imagine but I am going to ask for another blood test - assume this is acceptable. Anybody else felt this bad - just to give me a bit if hope. I am 71 and so frustrated as I have been fit and active all my life,. thank you.

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Yes I did feel that bad too , felt like I’d been poisoned . The good news is within a few weeks I felt almost human and by the time got to three monthly I was very nearly me and after 2nd I was back to me . I had felt so awful before being diagnosed I didn’t think that it would ever happen ! Now nearly 2 years on apart from some random rubbish days feel very much alive . It takes a while and try not to panic.

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Also only felt that awful after loading although still lose appetite after injection for a couple of days . Coconut water is good just after injections to up potassium levels and take folate tablets .

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will try anything - mind you could do with losing a few pounds hahah

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apparently is quite common but I have no idea how long I have been deficient - it took 5 years for my BP to reach such a level I was close to a stroke - its like a silent illness B12 deficient and BP. Mind you I still think I have my marbles unlike some sufferers I have read about. thank u so much

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there is no point in having another B12 test at this point because the results will be totally skewed by injections.

one thing that can happen when you start on B12 injections is that your immune system goes into overdrive - a lot of the symptoms we associate with feeling ill - such as fever - are actually ways the body has of fighting infections.

The aches and pains probably happen because the processes that allow your nerves to communicate have suddenly woken up - a common analogy would be thinking about an FM radio that has bad signal so you have turned the volume right up - when the signal suddenly comes through properly it is deafening until you manage to turn the volume down, which can take a while.

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great analogy and I know what you mean - but went to bed last night at 8.30 and woke at 3.00am slept on sofa till 8.00 am. went back to bed at 1.00 pm and got up at 5.00 pm and now off to bed again. So much useful information I have been sent and I don't feel alone with this. tx so much

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Hi cleoandpetra has your Folate level been checked?

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serum folate says 3.56 ug/l (3.00-20.00) but no recommendation on this - I am at the lower end but still within the spectrum. thank you for asking.

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Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body and your B12 levels are "bumping along the bottom" of the range.

It might pay to buy some Folic Acid 400μg tablets (take one a day) cheaply over the counter at your local pharmacy of supermarket either that or eat plenty of leafy green vegetables, sprouts, broccoli, spinach, asparagus, peas, beans etc..

You will also find folic acid fortified into many breakfast cereals.

I am not a medically trained person.

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I will do that - I do eat healthily - love sprouts eat fish eggs etc but folic acid here we come. Tx so much. this is such a supportive site.

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I tried for folic acid at the pharmacist today but given my adverse reaction to the injections they said I need to see a doctor as the dosage offered is very low and more for pregnant women (no chance there) so will pursue the folic acid. Tx for your help and support.

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I believe that higher doses of folic acid are only available on prescription - so best see your doctor

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Hi cleoandpetra

Do you live in Gloucestershire or Wales. I am interested as those seem to be the only places that give 5 loading injections. The NHS guidelines recommend 6.

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sorry l live in kent. they only advised me 5 injections. I will ask today whether the nhs guidelines have changed though. to be honest I don't fancy another one after this. have a good day

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I asked today about the 6 injections as I was having my 5th and last one, Apparently there was 6 injections but this doctors have said that 5 is more than sufficient. I told her about this forum and said that there were many many more like me who had this adverse affect with the injections. I was speaking with a woman in the clinic who said she has been on tablets but she did have other issues but did confirm her daughter had the injections but had avery bad skin reaction on her face and body so stopped them. Who knows whats right - I certainly don't but the sickness has subsided a little and they have agreed that over the next 3 months to monitor how I feel and the next injection (if I have been suffering) they would give it to me every 8 or 10 weeks. tx for your support and keep well yourself.

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I was exactly the same on my third injection... numbness/pins and needles all over. I am on my 5th injection and more tired than ever. Some have said that this is because the body is working so hard to repair. IDK

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me too - as we are on par with the injections will let you know what symptons disappear sickness not too bad now but appetite no good and still very tired. keep well

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Just wanted to add something to where you say we’re prescribed 5 loading , so was I and I also live in Kent . Dr originally gave prescription for 6 but nurse told me last one was for my first 3 monthly . I didn’t question it at time as I felt so rubbish was grateful to not have any more . I developed loads of spots after loading but they went with in a few weeks I was pleased to have them because I thought now at least people could see how rubbish I felt and all my badness was coming to the surface !!!

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I was exactly the same, my b12 was 58 and I believe it's just as clivealive explained so well.

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absolutely - he did explain it well. You were very low but it does make you wonder how low you were so low for how long and how much time it will take to get you feeling better. A bit like how long is a piece of string. keep well.

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Thank you, at the moment I'm still having investigations because of related problems and have been told it took a long time to get that low so it will take time for all the symptoms to improve. Hope you feel better soon xx

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tx for your kind words. keep well

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Hi cleoandpetra,

Even I had similar issues B12 level 115 on 10-Dec-2019, after taking 5 loading dosage in Dec-2018, I felt fatigue, numbness and rashes...but after 2 months I can feel a bit of improvement in my health. Now my level is raised to 180 and I still takes loading dosage of Methycobal 500 MCG . It takes time to improve b12 , six to 8 months.

Even my HB is always 14.9 with RBC count 4.9. Still I used to feel giddiness

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omg that long was hoping for improvement in a few weeks - keep well.

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Hi Cleoandpetra, I have kind of self diagnosed as doctors say my b12 is fine (226pg/ml). I get pins and needles after the injection (i am having them privately and getting one a week). The pins and needles seem to subside after a couple of days. It freaked me out but since you can’t overdose on b12 I am hoping it’s ok. I am also taking a multi vitamin that includes folic acid and iron as my iron is low. I hope you improve soon.

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thank you for your kind words and wishing you the same.

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So I had my third injection last week. The pins and needles has only been very slight this time - hardly noticeable. And I have definitely felt more energised so I am hoping something is happening.

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hello.....this is what happened to me too and i took it as a sign of how deificent i was.....everything got worse before it got better including new symptoms. It will settle down after a while but definitely keep up the injections. here's to your healing journey. hugs. J

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It’s your body adjusting to suddenly having something that it’s desperately needed for some time. All those nerve endings have to return to life, and it can be very painful.

If you have severe neurological symptoms you may need your injections to continue more frequently than every three months.

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tx for your comments - they have told me that my injections will be for life - but I hope that they do a blood test in a year to check how I am doing. It seems B12 you cant overdose - the only neurological symptom was I could not feel my middle toe on both feet - weird but I can put up with that. Bit slow crossing the road - I did say to my husband hope I don't fall asleep crossing one day. Humour is getting me thru. keep well.

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Glad you are keeping spirits up, cleoandpetra - a lot of people here get worse before better.

Yes, I had marbles spilling out all over the place. Who would believe it? If not for this forum, I probably would have said yes to the antidepressants just to stop the GP from offering them over and over. I knew I wasn't depressed.

Scared, of course, because healthy people take health for granted -and suddenly, here I was: sleeping for hours and getting up tired, naps in the afternoon, mood swings, irrational anger especially, finding it difficult to walk with tight legs having to be persuaded into action, hair falling out, gums bleeding, cracking and soreness at the corners of my mouth- a right mess and totally unemployable.

Who would have thought a vitamin deficiency could do all that and more ? Certainly not my GP or any of the consultants I have seen since. Their list of symptoms falls sadly short of the reality.

Ask people who are on this forum, people who have learnt to live with this condition, and they will tell you how to help yourself - for instance, if your folate and ferritin levels are low in range, which is quite common if you are B12 deficient, aim to get them up to the top 1/3 of range for best results. It takes time, and needs monitoring by blood test to keep levels within upper ranges (too much iron/folate has side-effects as well as too little)- not too often, just to keep an eye out until you get the balance right for you.

However, once deficiency is established and treatment started, a B12 blood test is not required again: it will only indicate that the B12 that they are putting into your bloodstream is in your bloodstream and they already know that. Your body gets rid of any excess B12 naturally.

These are not side-effects of B12 deficiency as much as they are signals that your body is finally healing. Getting worse to get better is better than getting worse !

The spots are as a result of the B12 injections. Usually they clear up after a few days and for most people, disappear completely after a while. I've noticed that even now, mine return if I have been a bit low.

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