So i get a B12 injection every 3 months, however my symptoms start to appear roughly 3 weeks before my injection is due,the muscle spasms and generally feeling weak, so I'm asking if there's a decent health shop that sells a tablet form to get my symptoms under control and ultimately will they help, any advice is truly appreciated 😀
Will B12 tablets help???: So i get a B... - Pernicious Anaemi...
Will B12 tablets help???
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Cb1963
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Hi,
Some people manage their B12 deficiency with oral tablets but personally I think that where people have an absorption issue in gut due to PA (Pernicious Anaemia), Coeliac disease etc then getting enough B12 from oral tablets could be difficult.
It's might be worth a go though if GP is unhelpful.
Do you know why you have B12 deficiency?
If you have or suspect you have PA, perhaps you could join PAS (Pernicious Anaemia Society).
PAS membership is separate to membership of this forum.
pernicious-anaemia-society....
I have not met any PA sufferers face to face who could manage just with high dose oral B12 although I think there have been some forum members who could. In fact most PA sufferers I've met have resorted to getting extra B12 injections privately or by sourcing their own supplies for SI (self injection).
My understanding is that just a small amount, around 1% (maybe a bit more) of B12 in an oral tablet gets into the blood stream by passive absorption in the gut.
Have you tried to get B12 injections more often from GP?
My understanding is that people with neurological symptoms due to B12 deficiency should be on this treatment pattern in UK
A B12 Loading injection every other day for as long as symptoms carry on improving then a B12 maintenance injection every 2 months.
Your GP can find this info in their BNF book Chapter 9 Section 1.2
You could also look in section on Indications and Doses for hydroxocobalamin in online BNF.
Search online for "BNF hydroxocobalamin".
You mention "the muscle spasms and generally feeling weak,"
Weakness and muscle spasms would usually be considered as neurological.
Do you have any other neuro symptoms eg tingling, pins and needles, tinnitus, flickering eyelids, limb jerks, memory problems, poor balance, clumsiness, difficulty getting right word out?
See symptoms lists below for more neuro symptoms.
I used PAS checklist below and added extra symptoms at bottom of page.
pernicious-anaemia-society....
b12info.com/signs-and-sympt...
theb12society.com/signs-and...
Have you considered writing a short letter to your GP outlining your concerns?
I think a letter is harder to ignore.
Always keep a copy.
Link about writing letters to GP about B12 deficiency
Point 1 is about under treatment of B12 deficiency with neuro symptoms present.
b12info.com/writing-to-your...
The link has letter templates you can use.
"however my symptoms start to appear roughly 3 weeks before my injection is due"
It is vital to get adequate B12 treatment. Delayed or inadequate treatment increases the risk of developing permanent neuro damage. In severe cases the spinal cord may be affected.
Symptoms Diary
Have you tried keeping a symptoms diary? Maybe track about ten symptoms and record severity each day or each week. Note any treatment given. Could be useful evidence of improvement or deterioration to show GP.
I left detailed replies on this thread with other info you might find useful including links for those struggling to get enough B12.
Help Needed! Have I got Pernicious Anaemia?
healthunlocked.com/pasoc/po...
A bit more about oral B12.
I think there is too much emphasis on treatment with oral tablets in the new "NICE B12 deficiency guideline" published this year 2024.
This UK area has a treatment algorithm that seems to put most patients on oral tablets.
b12info.com/gloucestershire...
Note on oral treatment - B12 Institute (Netherlands)
b12-institute.nl/caution-no...
Search online for "Cochrane review B12 oral versus IM" and read the conclusions.
I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.
I've had the loading injections right at the beginning and I'm on a 3 monthly cycle, I've had numerous problems with my stomach and also numerous general anesthetics and was told to stay on omeprazole, however I don't take them as I know these affect the stomach, it was because I had a stomach bleed, but I know they inhibit the good acids ,:my symptoms are always the same a few weeks before my next injection and it's not pleasant, that's why I was asking if the tablets would get me over the line until my next injection, thanks for your in depth response 😊
Hard to get that 2-monthly regime. After years of not realising I was not treated properly, the lovely gp gave me monthly jabs. She retired and a surgery 'audit' put me back to two monthly and not long a neurologist after said I am only to have 3 monthly. No-one listened, no matter how many letters I wrote. Sad state of affairs.
Hello, I am relatively new to all this but have done masses of research. Like you I am on every three months injection, in about a year they will decide how to proceed. I've started to take 2000 of vitamin b12 most days too, whether it helps or not do not know, too early to say, but to me worth a try. Before the injections I had enormous black rings over and under my eyes, like a panda. This can be a sign of lack of vitamin b12. The rings are still there but much smaller now. I understand vitamin b6 is also important. Good luck in feeling better soon.
Yes its a nightmare trying to even understand our bodies, and I think doctors don't even know the seriousness of this condition, its very damaging to the body, best of luck and thanks for your reply 😊
The whole thing is a minefield and there are always people who try to tell you what to do, sometimes people with no idea whatsoever. Others assume you are the same as them even though this can vary a lot. I think you might find any support and information you need on this forum, one thing I learnt years ago is that some people wear their illness as a badge as if to say LOOK AT ME. I AM CAROL AND MY WHOLE PERSONA IS MY ILLNESS, WHICH IS XXXXXXXX. They don't want to get better, they get some sort of happiness from holding onto it. Perhaps there would be nothing there at all if you took that away. But people like us struggle to feel better even if not totally well. We don;t get a thing from being "ill" such as disability benefits or constant attention or sympathy. Most of the people I've spoken to ab out this who do not have it cannot see anything wrong with us so cannot understand why we say we are ill. If you had a broken wrist you would get loads of sympathy even though it is would easier to cope with.
Yes I've said before on different posts that many conditions are invisible, I suffer with cluster headaches and these are absolutely brutal, nobody can see a grown man cry at 2am in the morning, these are one of the worst pains known to mankind, so much so they have a special clinic run for people to ring up the duty nurse to see what else can be done, and the last resort is oxygen therapy, and I never had much sympathy for those who suffered with migraines or headaches, I'm now learning a sharp lesson of empathy and support for others 🙏
Yes many things are invisible yet cause great distress or disability or even worse.
Hi Cb1963,Im so sorry about your headaches. I can empathize. I get very bad ones too. In bed for days. Ice packs, dark room, no noise, no taking. The B12 has helped a lot, but it is debilitating. We miss out on so much. The thing that helps me the most is a headache icepack. Some get to cold, but I found one that is really great and it velcros around your head. Some of the one size, sock types, are to small and too cold, and warm too fast. Mine has individual cold cells. I take love it. It has saved me from excruciating pain. I wish everyone in this thread good luck. This is a very common question about oral B12 and I think everyone answered it great. I just wanted to give you my empathy. I hope an ice pack helps you.
Unfortunately these headaches only respond to certain medicines, they are brutal, the wording " suicide " headaches is what these things are all about, they take you to places you'd rather not think about, the last resort is oxygen therapy, I was fortunate enough to try a different medication and it worked, the headaches can come in long cycles lasting months, and maybe 4/5 per day was leaving me at my wits end, these headaches are one of the worst pains, even on the 1to 10 scale they are at the top of the list even beating child birth and I reckon that's a painful enough process to go through, and I'm not underestimating any lady who has to go through this happy occasion!
they won’t help if you can’t absorb it through the natural process in the digestive tract
That's really informative and looks like I need to rely on the injections, thanks for your reply 😊
Without getting into a long discussion or disagreement - am too busy and life is too short anyway. I have seen opinions that say it can help and is an alternative to injections. You can choose to believe that or not, but I had the tablets here already so no harm in taking them and seeking, it was that or throwing them away. If they help I will get some more. Have a nice day.
We absorb about 1% through passive absorption. My tongue is painfully swollen. Sometimes I put one under my tongue to dissolve in hopes it soothes my tongue. they are cheap so might as well do it. I think it helps a tiny bit. It may be wishful hoping, but can't say for sure. I don't see any reason to not do it if it makes one feel better mentally or physically.
Yes thanks, I agree with you. I already had some which I had bought before I knew I had pernicious anaemia. Rather than throw them away I take two a day - 1000mg. At least it makes you feel less imprisoned with the situation, as if you are doing something try to help yourself.
Do you self inject? If not and you want to help yourself that is what a lot of us do here. There's tons of information on here about it.
No I dont but am considering maybe doing that in the future.
You will not be sorry. Talk about liberating and taking control of your life, that will do it. Anyone here will help you. I order my b12 from Germany. I inject every day. It has changed everything.
If you go to the homepage of the pernicious anemia group and scroll down to the pinned topics there is some important pinned notices there. One is a lot of different resources available to you and the other one is links and information about self injection. And self-care. I think you're going to find that information very very helpful.
I have read a lot about self injecting here and elsewhere and will consider it. We are all different and part of my problem is that I have small lungs - which means that where a person with normal lungs can breath in 400 of air in one breath I can only breath in 200, which means I lack energy and get worn out quickly because of that. But I also have low serotonin. A doctor would say take an antidepressant, but whether I take a factory produced one or a natural one from herbs I get bad nausea and stomach aches, so it is not that simple. And, of course, low serotonin means low energy. It also means insomnia etc which I struggle with daily.
Interesting. If you were to Google is serotonin a symptom of a B12 deficiency the answer is yes. So a lot of these things may clear up if you take more B12 or get more injections because sublingual B12 is not going to help you. Not like you need. Also I also have a lung problem it's due to pernicious anemia my oxygen intake is very low as well and I get very out of breath. But that is a symptom of my pernicious anemia whereas I get Sjogren's disease which causes a lot of other underlying problems. So believe it or not a lot of the symptoms you may be having are related to pernicious anemia. You would be very surprised at what is a symptom. Where there is one autoimmune condition there are several. And the ones that are very common with pernicious anemia are Hashimoto's, Sjogren's, rheumatoid arthritis, parathyroid issues, lupus, the list goes on and on. So it could be that if you were to get more B12 a lot of your other symptoms could get better. But it depends on how long you've had it. And we are all different. I went undiagnosed and untreated for over 44 years. So my symptoms are pretty advanced. However not Advanced enough to have stomach cancer. And I also had Lyme disease untreated for the same amount of time actually and if not longer so that also complicated things. Anyway you would be surprised at all the things that are related to your pernicious anemia.
Yes I know, I googled it thoroughly last year when I found out about it. I got the pernicious anaemia over the past few years - a proven fact - my B12 levels were fine four years ago - and have had problems with small lungs and not being able to breath in much air since I was born. I really do have small crunched up lungs. It's not a guess. I'v e totally researched symptoms of PA so know when there is a connection.
I didn't mean to dismiss your small lungs at all. But your insomnia and the other thing could very well be part of B12.
Yes I understand. It could be because I had a total hysterectomy three years ago. Including ovaries and have been struggling with poor health ever since. I have researched everything fully, my doctors and nurses have often not thought of things and I have had to explain it or suggest it to them.
Sounds like you've been through a bit of stuff. When I was 23 I had to have a hysterectomy because a dog ripped my abdomen open which caused a lot of scar tissue endometriosis, and all kinds of terrible things so I had a hysterectomy when I was 23 and my life proceeded to go downhill from there and since that time I've had nothing but trouble and now I'm going on 63 and I have all this wrong with me. I've heard that some autoimmune conditions are hormone driven. I know my cancer was. I was given Lupron injections when I was 23 which put me into synthetic menopause and then they put me into real menopause by taking everything including my ovaries. I developed early onset osteopenia and all kinds of things that I should have gotten when I was older I developed when I was younger and that's when all my autoimmune conditions started. So I don't know if there's a tie to that or not and evidently my doctors don't know either. But I feel there is. Good luck with everything
Sounds like you need to have injections more often. I'm assuming you're getting hydroxyl B12 which is believed to last longer than the cyano or methyl injections. But this has more to do with the fact that hydroxyl will bind to a lot of different proteins in your blood and therefore it registers as being present but it is not accessible to your B12 receptors which is why you end up feeling your symptoms sooner. I suggest you discuss this with your doctor and ask at least for your hydroxyl injections more often than you're currently doing them or to ask for a change to cyanoB12 and do that at the minimum once a month.
Thank you for that information, I had been wondering how they were different. Can you point me at more of this type of information please? I'm on Hydroxy as it's the only one normally provided here but my symptoms return if I don't have one about once a week.
If your symptoms return when you don't have an injection every week you need at least one injection a week, but better not to wait that long. You treat the symptoms, ignore the calendar.
Thanks. The symptoms return if I space it out more. I went a month, twice in a row recently, by mistake. I felt pretty crap but improved again thankfully after a few weeks back at weekly. I might feel better if I had more, I might try that sometime soon.
Ideally, you would have your injections more often (e.g. 2 monthly to avoid symptoms returning), but if you can't get that, then it is worth trying oral b12 to help space out the injections. It works for my daughter (she's currently taking 3mg/day orally of methylcobalamin and approximately weekly injections), but not for me (3 injections/week).
It can't hurt. We do whatever we have to for relief. 1% absorption is better than 0. 👍
The guidelines state that with neurological symptoms injections should be 2 months not 3I have PA.. and personally I self inject... daily..to keep symptoms from returning.
I started with neurological symptoms over 10 years before I was diagnosed ... so I have a fair bit of damage
My son who is 25 was having horrendous continuous headaches..tingling and various aches and pains... he was diagnosed just a few months back..had loading dose of B12 and thought he would be OK to wait till his next injection 3 months later at the surgery...he is now injecting every 4 days to keep the headache from returning
Cofactors are essential in healing... folate..ferritin and B6..are all needed
I will post a table of cofactors which explains why x
Image
I agree that you sound like you need more frequent injections. Check the symptom lists to see if you are getting any others as well as this might help you with getting cooperation from the Doctor. - I don't know why they are so stingy the damn things are so cheap and non-toxic.
Anyway, failing that, or in the meantime, iHerb sell B12 that is affordable, in tablet and liquid form, and their shipping is good. You can hold it (either type) under your tongue and that helps increase absorption.
Magnesium might help with you cramps. If they are caused by the B12 problem it may just be a case of reducing the discomfort you are having without solving the real problem. I used to take between 800-1600mg per day, usually at night.
I was diagnosed with B12 malabsorption and had injections every three months . Like you I found three weeks before the next one was due I felt exhausted and also for a week after having the injection. I went to the GP numerous times asking for the injections more frequently and each time I was told no. Could only have the next one a week before due date as well.I showed them the NHS website article stating that if the B12 level is low due to malabsorption you may need them more frequently. During this time i was also diagnosed with coeliac disease. Finally I made an appointment with a new Dr explained my symptoms said how awful I was feeling during these 4 weeks. I was prepared to ask him could I pay for the extra injections, didn't want to self inject couldn't do daily activities etc
He finally agreed and said I could have the injections every 8 weeks on NHS and I feel so much better no huge dips in energy , tingling fingers etc.
Good luck hope you are feeling better soon x
Thank you for your reply 😊
It might be worth pushing for every 2 months if you don't want to SI.
Yes I'll probably try that option
Good luck🤞
Hi I also have B12 deficiency caused by PA, and suffer the same symptoms as you. I pursuaded my GP give me an injection every 8 weeks. I tried taking high dose B12 tablets, I read somewhere if you let them dissolve under your tongue it might be absorbed better (I don't know). I have tried OmniCo skin patches from Amazon. They get good reviews on Amazon but poor reviews on this forum. They seem to work for me, you GP said its a placebo effect, that's fine by me 🙂 They're about £10 for a 30 patches. Might be worth a go.
Hey that's really interesting and my give them a go, I appreciate your reply 😊
Assuming your ferretin and folate are in good shape, I would ask for more frequent injections or buy your own supplies and learn how to self inject. The B12 Society out of the UK is a wealth of information and a great place to start. Good luck!
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