B12 injections not working: I have pa I... - Pernicious Anaemi...

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B12 injections not working

kyanah
kyanah
25 Replies

I have pa I have b12 injections every 3months but I'm still so tired and stomach is bad constipated all the time .i keep getting pins and needles as well could my folate be low as well . My doctor will not give me b12 any earlier my b12 was 110 it took 2 years and I was very very ill .

25 Replies
oldestnewest
beginner1

A bit late for most people, just the owls like us up. Tomorrow, I'm sure, you will get some excellent advice. I did. Best wishes.

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kyanah
kyanah
in reply to beginner1

hi did u get tired all the time as well what were ur symptoms.

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beginner1
beginner1
in reply to kyanah

Before getting my B12 injections I slept very badly. Now it's much better, not nearly so many bad nights. I get tired very quickly too but that's not surprising with all I have had this year.

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Janey121314

I am unable to sleep too.

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Janey121314

I am taking SL B12 but I keep feeling sick. Is this the B12.

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clivealive
clivealiveForum Support

Hi kyanah as you have P.A. and are having neurological symptoms you should be receiving B12 injections (at least) every eight weeks instead of twelve as per the guidelines below:

Treatment of cobalamin deficiency

Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,

"Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks, then every three months.

The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months".

Unfortunately it appears that some doctors only read as far as the first paragraph and ignore the second which I've highlighted.

Go back to your doctor and ask him to read the B.N.F. guidelines as copy of which should be on his desk and if he can't find it suggest he looks at the N.I.C.E guidelines which will tell him how he should be treating you.

google.co.uk/url?sa=t&rct=j...

Your doctor will read on there the need to check your Folate level as this is essential to process the B12 you are having injected.

List your symptoms and present it to your doctor and write down or print what you want to say rather than rely on your memory. If possible take someone who can verify your symptoms as the doctor is less likely to pooh pooh them in front of a witness.

I am not a medically qualified person but hopefully the above will help you get the treatment you need and I wish you well

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beginner1

“Unfortunately it appears that some doctors only read as far as the first paragraph”

Some don't can't won't even read that far.

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kyanah
kyanah
in reply to clivealive

hi I just got my blood result back doc said my iron is on low side I said about my tingling in hands and feet and I keep losing my balance and very dizzy .she said my b12 is fine and not to worry about the iron its only just under she said shell see me in 3weeks I cant cope anymore I feel dreadful ,I don't understand why this has started up again even though I'm on 3monthly injections.

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taka
takaAdministrator
in reply to kyanah

I'm not clear - did she give you a prescription for iron of some kind - most likely tablets eg ferrous fumerate or ferrous sulphate? Low iron may well be the cause of many of your symptoms. Mine was just under the range for my area for ferritin last summer and I felt dire - breathless, dizzy and incredibly tired.

Were other things also checked too eg folate and Vit D? How were they? Maybe pop your results up in a new post if you have them?

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Gambit62
Gambit62Administrator

likelihood is that you just aren't getting the amounts of B12 that you need.

there is no scientific support that I have come across or anyone else that supports the 3 monthly shots - in some other countries it is monthly or as the patient needed - even where using hydroxo. Unfortunately the licensing system in UK is such that hydroxo is only licensed for 2 monthly frequency and many GPs won't go beyond this. There is also a lot of mythology that B12 is addictive or that the reported effects are just all in people's minds - which is a load of rot at best.

Have you kept a diary around your injections showing that they have an effect but that it runs out well before 3 months. The tingling is a neuro symptom and the recommendation is 2 monthly for that which might help a bit.

Look at the pinned posts and the guidelines and try writing to your GP. Also join the PAS if you haven't done so already and try contacting them for more specific support.

pernicious-anaemia-society....

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06hollyberry

I don't have P.A but believe ( now I know all the symptoms) to have been deficient for several years. My result was 198, just within the magic range, so GP dismissed it as responsible for my symptoms.

I started s.i. last August and have just got to an injection every 2-3 weeks. Longer than this and the symptoms start to come back.

I think you'd need much more frequent injections to heal the damage that's been done in the past.

I can only echo everything @clivealive said. Your doctor needs to do more to help you get well.

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viniciuspaiva08

If you follow the steps above, you'll get better, believe me. I started the treatment with one injection per week. It didn't work. When I got the atack dose, the symptoms were gone. But, also supplement the folic acid and another vitamins.

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shipscat

Your level at 110 was very low, mine was 100 and 3 monthly injections did not work for me. The docs wouldn't give me them more frequently and didn't believe my symptoms were due to B12d. I now SI weekly I still have symptoms but I have a life, which was slowly ebbing away from me last summer after 8 months of only having the loading injections and two 3 monthly jabs. I thought I would have to give up work and my marriage was suffering. I didn't know about the co-factors, I was taking Vit D as I was also deficient but I wasn't supplementing folic acid. My level was in range when first diagnosed and the doctor said it was dangerous to supplement folic acid unless deficient. My folic level dropped with injections so I now take 400mcg a day.

I am so grateful to this forum and others. I wish you best of luck, if you don't have success with the docs consider SI. There a lots of people on here who can point you in the right direction. Post your blood results for advice.

Best wishes X

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kyanah
kyanah
in reply to shipscat

thankyou so much I thought I was the only one who's symptoms return I also get spots on chin when I'm low

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shipscat
shipscat
in reply to kyanah

I get spots too some are in my hair which is especially annoying

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catherinejordan

Could you self inject? I do

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Ryaan

It depends when you started treatment, how many loading doses u had and how long it's been since you've been on regular injections. Every 3 months (which most GPs stick to in UK) is often way too less.

110 is very low but I doubt your doc gave you the right treatment(frequency).

Also Folic Acid goes hand in hand when on B12 injections.

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mountainice
mountainice
in reply to Ryaan

I've been on injections 8 years and realise now it should have been alternate day to start due to numb feet. I only recently knew about co-factors and still haven't started as asked doc (not my one) for a folate test as it halved between 2014 and 16. Waiting for result. That particular Doctor said he'd been dealing with B12d for 25 years and had never heard that folate has an effect on how B12 jabs work! He did agree for me to have folate tested though.

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sharonway96

I used to be like you, I begged my gp to increase my injections, n after a while they did to every 8 weeks. That really helped with my memory but come week 6 my memory was going again, I was sleeping all the time n found it hard to stay awake. So again I begged them to increase them after a year or so they agreed to try 6 weekly as a trial. It's been a few months since the trial started n believe me it's made a big difference. I still get tired towards the end of week 6 but no where as much as I did before. Ask your doctor if they think it's worth increasing your dosage an see how it goes

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kyanah
kyanah
in reply to sharonway96

hi did u have pins and needles between shots as well and do u take folate too.im so anxious all the time they put me on setraline for my anxiety but don't seem to workim so tired and confused mine all started with bad stomach.

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tiredjan

I was so tired that I couldn't even walk! I was falling asleep all the time and my heart was pounding, now my GP allows me my injection every 4 weeks.

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sharonway96

Yes, my hands n feet used to get pins n needles. I'm on folate tablets I have to take one every day, I'm on so many tablets if I could stand I'd rattle. I have many other illnesses apart from pa but pa is (to me, each day) is the worst. My doctor put me on anti depressants saying I was depressed when I wasn't. They referred me to a therapist to see how depressed I was. They said I wasn't depressed at all an that I was just pissed off being bed bound and that I was frustrated I couldn't do much for myself. Doctor read the report n ignored it, n put me back on the anti depressants. I never took them. Sometimes doctors put you on them because they only hear what they want to hear. It's easier for them to label you as depressed cause it shuts you up for a while. Since I found Pas I've learnt so much about pa it's reduced my stress levels, sounds weird I know. My doctors just didn't understand how I felt each day n said most of my symptoms was in my head. But when I spoke to pas things became so clear, I soon realised doctors don't know much about pa at all. Try n learn as much as you can from pas and from others like you who have it. It will help keep you sane n never let the doctors doubt yourself. The anxiety might be where your worrying about pa n not really sure of what's happening. Relax, take 5 mins for yourself an talk to others. Good luck n I hope you manage to find all the help you need xx

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sharonway96

Stress can can cause stomach problems, as long as your feeling okay (as much as okay is possible) try to relax. Its easier said than done I know. But believe me, once you understand what's going on n what pa is things will get easier

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kyanah

thankyou that's helped me alot.

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Coachlady11

I gave up on asking my doctor if I could have jabs every 8 weeks instead of every 12 as I was always told no

So I looked into self injecting

I got some excellent advice from this site and help with sourcing everything

Did my first one this morning and despite being nervous it was easier than I thought

It's just a shame that so many members have to choose this route because their go don't understand the disease properly

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