Pernicious Anaemia Society
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B12 supplements or B12 shots?

Hi all,

Which is best for me to have B12 sublingual tablets or to have B12 shots?

I am felling very low right now, I have started the loading dose of B12 shots but I fell awful, very tired and all my body hurts, can't sleep well, headaches, pins and needles in my hands, arms, legs, sore tongue, chest pain, palpitations, numbness and more.

I have had 3 injections until now but after this 6 loading dose I will receive one every 3 months

So I was thinking to have some more as my symptoms are so bad

I have folate deficiency and vitD deficiency

I am taking vitD 20.000IU and Folic Acid 5mg

So which is best to take B12 sublingual tablets or shelf inject with B12?

And from where can I buy what I need?

Like the injections and needles, B12 tablets etc?

Thank you

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Hi Ioana_17 according to the N.I.C.E guidelines loading doses should "continue until there is no further improvement" in neurological symptoms which include those you mentioned above so one option would be to list them and go back to your doctor asking for the injections to continue.

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

Click on the link, then on "Scenario: Management" and scroll down.

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having injected starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

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Hi clivealive, thanks for the response, but I don't think the GP will want to gave the injections until no further improvement, as she didn't want to give the injections at all.

She wanted to wait for the haematologist to say that I need B12 shots as my B12 levels were 233 (191-663) and she thought that I don't need the injections just "some" folic acid as my folate was 2.6 (3.9-26)

She wrote a letter to the haematologist with copies of my test results saying that B12 levels normal, Gastric Parietal Cell Antibodies positive, Instrictiv Factor Antibody negative, waiting for further instructions.

So I decide to shelf medicated, but I need a little bit of help.

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You could always point your doctor to what The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

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

So even though your B12 results are "within range" your neurological symptoms need to be treated.

It is important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

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.

I see you are supplementing with folic acid so hopefully you should see some improvement soon.

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I am hoping too, because right now all I can see is that all my body hurts.

Feeling like I was hit by a truck, with my heart pounding and headaches.

How long will take until I will feel me again?

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I had B12 level of 200 and losing feeling in my lower legs. B12 injections immediately helped. But my primary was concerned about on-going B12. I gave her an oration on how B12 is virtually non-toxic (your body excretes it daily). She's has not had a problem since.

I read a study in Japan where they took two groups of people: One control group and one group that was given enough B12 to keep their levels much higher (1300-1500). After years as the people in the study aged, they found the control group had the same occurrence of Alzheimer's as general population. The other group with elevated B12 levels had a negligible occurrence of Alzheimer's.

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Hi there! I'm on here because recently I'm also losing feeling in my lower legs and my doctor doesn't know why. I started taking sublingual b12 supplements just a couple days ago. They are 2500mcg and I've been taking 4 at a time because I'm kind of scared and desperate. Do you think that's enough or do I need the injections? If so where do you get them if not from a doctor? I haven't had my b12 levels checked yet but will ask my doctor about it. thanks!

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I had a couple feet of end of my small intestines removed. Doc didn't bother to tell me of prophylactic measures needed. I slowly lost feeling in my lower legs. I desperately researched why, and found that B12 is primarily absorbed at end of small intestines. And studies stated that if lack of B12 continues, the nerve damage is irreversible after 3 yrs, and 'induced Alzheimer' down that road. B12 injections brought relief. I tried sublingual B12, but to no effect - my lower legs 'talk to me'. B12 is virtually non-toxic - no worries about taking too much - you excrete B12 every day - just make sure you take Folate as well. I do B12 twice weekly - my primary doesn't even bother with B12 test any more - waste of time and money. I use a 30G 1" needle - shorter diabetic needles don't have an effect. Nurses like to use a 25G (twice diameter as 30G) when they inject. But I have a real problem using anything bigger than a 30G when self-injection (plenty of how-tos on Youtube).

One doc put my situation in a positive spin, that older people over 50 don't absorb B12 that well anymore - so it's good that I'm doing the injection.

I found that B12 as cyanocobalamin is cheapest, more stable, but does not last long (breaks down or excreted faster?) where the effect of methylcobalamin B12 lasts twice as long, more bio-available (methyl group), and twice as expensive (only obtained from Compound Pharmacies). Others on this board know of hydroxocobalamin and adenosylcobalamin.

'if not from a doctor?'

There are on-line sites - compound Pharmacies in the States that sell B12 (methylcobalamin) (ie., some online doctor will ask you questions and then allow to buy their B12).

Good luck.

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Hi Sommerdaey

Do you have a link or a reference for the Japanese Alzheimer's study?

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No, I don't. I researched that about 10 yrs ago (circa 2007) when I was trying to find the boundaries of B12 side-affects. And that stood out when telling my primary. I looked for it recently and couldn't find it.

If anyone has access to medical studies archives at work (ie., archives generally are paid subscriptions).

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B12Awareness.org This website belong to the famous Sally Pacholok, her DVD is a true story based on her own complications & struggle to get health professionals to take this condition seriously, which I'm pleased to say they did. Based in America but hopefully we will follow suit. Tracey Witty has the website above, that I often recommend for UK patients.

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loana_17, there is a lot of individual variation in the way people respond to B12 with the result that some genuinely do feel quite bad before they start to feel better and in other cases it can take a very long time before people start to feel better. It isn't uncommon for people not to notice any real change for 6 months or more.

You also have other deficiencies going on that have overlapping symptoms and make it very difficult to be sure that B12 really is the problem.

If you had macrocytosis - enlarged/rounder red blood cells then that takes a few months to correct.

There are supplementation possibilities but there is no guarantee that what works for one person works for another - and some people don't find that sublinguals work for them. All you can do is try - but I'd suggest waiting until the loading shots are over before actually starting that.

Options in terms of type of B12 are: cyano, hydroxo, methyl, adenosyl. cyano is the most stable, methyl is the least. Which suits you is likely to be affected by your genetics but how the genetics works really isn't very well understood. There is a lot of hype out there about methyl being best because it is 'the form used in your cells so is easier to absorb' unfortunately this isn't true as the absorption process involves separating out the cyano/hydrox/methyl/adenosyl component, binding with another protein and then separating off that protein and recombining with either methyl or adenosyl in side the cell when running different processes.

Delivery options are sublingual tablets, sublingual sprays, nasal sprays/drops and skin patches.

Sometimes recovery just is slow. Mine was.

You may want to suggest to your GP that she takes a look at the BCSH guidelines on diagnosis and treatment of cobalamin and folate deficiencies which you can find here but they can access through the BNF

onlinelibrary.wiley.com/doi...

- these are quite clear that 25% of people present with B12 levels in the normal range, 25% don't present with macrocytosis and that prompt treatment if there is neurological involvement is important to prevent permanent damage. They also emphasise that treatment where there is neurological involvement should be more aggressive.

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Thank you Gambit62 for your response.

I have tried several times to point to my GP from all the documents that you lovely people shared whit me, but she did not want to take in consideration.

She is waiting for the haematologist to say that I really have B12/folate deficiency with or without PA, and I need the shots and for the gastrologist to say if any absorption problem.

But I do want to have a back up when I will finish the loading doses.

I do not want to treated me as depressive person and keep prescribed me anti depressants.

She accepted the loading doses just because I literally implored for them to see if any improvements.

I saw that many of you are SI and I know that you can not overdose with B12 and if you are kind to let me know from where I can buy B12 injections and needles and some advice on how many times I can inject, once a month, once a week?

I know that we are all different but I really need to get out of this and have my life back as I need to take care of my 2 daughters and the way I am feeling right now I cannot take care of me...😢

Thank you xxx

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Please be very careful with oral B12 supplementation. It doesn't work for everyone or all the time. My B12 deficiency started in 2005. One of my first symptoms was a progressive peripheral neuropathy. My GP tested my B12 once - it was in the upper half of the normal range. About a dozen neurologists I saw (I ended up at a neuromuscular clinic in a big teaching hospital) tested me for everything under the sun except B12 deficiency. Then I discovered that total serum B12 measurements have very low sensitivity in everyone, and particularly in people who do regular exercise (I am a recreational cyclist). This is the article that I think kept me out of a wheelchair:

ncbi.nlm.nih.gov/pubmed/162...

I started taking high dose oral methylcobalamin and gradually my neuropathy started to resolve. The neurologists at the neuromuscular clinic laughed when I told them I was taking high dose oral methylcobalamin and said it wouldn't do me any harm. Everything seemed to go OK until January 2017, apart from a little residual parasthesia in my feet. Other than taking 5 mg methylcobalamin and a B complex every morning, I forgot about the neuropathy. Then in January 2017 the parasthaesia in my feet started getting bad again. My balance went haywire, I lost my sense of smell, my tinnitus got a whole lot worse, I started having difficulty reading more than a few words at a time, and had difficulty remembering simple words. At first I thought the quality of the B12 I was taking was the problem, so I changed to a different brand. Made no difference. In mid Feb I decided the problem might be me rather than the tablets so I went to a nearby bulk billing (no payment needed) GP and told her my story and asked for hydroxocobalamin injections. I am still getting 2 shots per week and most of my symptoms have resolved or are improving.

It would have helped to see this article in 2005 (I found it in February 2017):

b12-institute.nl/caution-no...

With hindsight, I think I was starting to become deficient again in about 2013 or 2014. Oral B12 supplementation might work for you but you must be alert to the slightest return of old symptoms or development of new ones.

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