Pernicious Anaemia Society

Vitamin b12 defieciency

Hai friends i am samdhya...i am having b12 defieciency since 2013..and i dont know at that time it was b12 defieciency....and i am having extreme fatigue,tinglings all over body and depression....and currently my b12 levels are 107.7 and any one suggest me how to get rid of this defieciency completely....

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b12 injections asap

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Can b12 defieciency treated completely????

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some have made remarkable progress,the sooner the treatment the better. Seems like if you are not numb, your nerves most likely will be fine with treatment.

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4 years back on September 2013 this problem has started....but no doctor told me take b12 serum test...but some where i have read that with in 6 months since the problem has started we should take the treatment immediately otherwise the consequences are irreversible....is it correct????

And i have one doubt does this problem causes the ear problem....on 15December 2016.i talked on phone with my right ear as soon as i removed the phone i was started feeling heavy and discomforted feeling..and from that day onwards upto three months nearly i feel my right ear heavy.....after 3 months this problem solved,and whenever i put the phone on any of the ear i startedfeeling heavy...discomfort..i have a doubt that because of b12 defieciency my ear nerves has effected????

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I've been having symptoms since 2010, that I remember..maybe even sooner and noticed improvement with weekly injections so I suggest trying to get those asap. Not sure about the ear thing, for me symptoms change daily it seems. My ears have been ringing and Ive been dizzy, tmrw I may wake up totally different.

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I heard that the ears effected up to ringing in the ears but i have heaviness feeling....i dont know what is going on....😣😣😣

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I feel 24/7 dizzy.. Nd off balance ..when i turn my head feel like mild dizzy... I also do nt know whts wrong wth me.. Its almost 5½ mnths.

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Hai shalinee...in the starting i also fèel the same...and the symptoms are very severe so that everytime i used to sleep with no energy in the hostel... and my hostelmates actively going to institutes...and i used to feel like whats wrong with me....every time i feel like i am having some problem....i am no more able to study....and anxiety....

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R u having injection now?

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Hai shalinee....my doctor gave tablets only for 3 weeks...and told me to eat green vegetables and fruits more...and milk and milk products and meat...and i will consult after 3 weeks...already 1 week is over...

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I hav neurological symptoms u need injection.. Consult wth ur dr... Btw ur treatment under neurologist or General physician?

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I am under neurologist...here in mumbai doctors even could not spare even 10 minutes per patient...

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Do u feel neck pain also?

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No....

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Pain in somewhere in body?

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Hi Sandhya_rani are you in the U.K?

Did the doctor who told you that you are B12 deficient prescribe any treatment - if so, what?

Were you given any idea as to why you have become deficient?

Do you know whether your Folate level was tested at the same time?

A Vitamin B12 deficiency may be "treated completely" and as gg317 says that treatment needs to be started as soon as possible.

I'm not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 46 years.

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I am from india....sir....as per reports doctor told that i am having b12 defieciency...and i was told to eat animal products and milk products....

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Did you a vegan diet? If B12D is due to your diet you can take oral supplements (1000 mcg/day)

Good luck!

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Marybrown06, 50mcg a day is the dose recommended to treat a deficiency caused by dietary deficiency. 1000mcg a day is a dose that can help in maintaining levels in someone who has an absorption problem

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How to now that we are having absorption problem?

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see separate reply below

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No Gambit62, when you have deficiency (107 is high deficiency, worst than mine and I already have many symypoms...) you should take 1000 mcg per day until no further improvement of symptoms.

This is currently what I take.

This is the international consensus and the recommendation of the French Vegan Society.

Then, when you don't have any symptoms 50 mcg/day is fine (or 2x1000 mcg/week).

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Marybrown,

There has already been some discussion of the recommendations made on the Vegan society sites which seem to be based on a mixture of articles relating to treating deficiency caused by diet, and treating deficiency caused by absorption problems - so not based on consistent information, and not consistent with standards used for treating cobalamin deficiencies.

50mcg a day is the dosage used in the UK and recommended by the British Committee on standards in haematology for treating a B12 deficiency caused by dietary deficiency. The standards are similar in the US. 50mcg is a dosage that will ensure that more B12 is going in than is being used (for a person who does not have an absorption problem), even if it is being given in just one dose.

1000mcg a day until no further improvement is dosage recommended to be given by injection in cases of B12 deficiency, caused by absorption problems, and with neurological symptoms.

onlinelibrary.wiley.com/doi...

(not sure that you will be able to access if you are outside the UK.

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Hi Gambit, I followed your link and could not find what you said, where exactly is it written?

I have read "The BNF advises that patients presenting with neurological symptoms should receive 1000 μg i.m. on alternate days until there is no further improvement."

Thanks in advance

(I'd rather take less B12 if I could because I have side effects but I would like to be sure there is no risk my recovery will be slower, as I have neurological symptoms)

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The article isn't exactly clear in relation to dietary deficiency but two sections are relevant.

Vegetarians

Various studies show that vegetarians, especially vegans, have a lower cobalamin status than omnivores (Stabler & Allen, 2004). Biochemical markers of cobalamin status may reach significantly abnormal levels, resulting particularly in hyperhomocysteinaemia, which may have cardiovascular health consequences, and therefore it has been suggested that cobalamin status should be monitored in vegetarians (Refsum et al, 2001; Herrmann et al, 2003). Strict vegans are at increased risk of deficiency, especially during pregnancy/breast feeding, and oral supplements during this period are recommended.

Recommendations

Vegetarians, particularly strict vegans, should be considered for monitoring of their cobalamin level according to clinical assessment (Grade 2C).

Dietary alterations or oral supplementation may be considered according to the clinical situation (Grade 2C), particularly during pregnancy and breast feeding.

and on oral supplementation earlier in the article.

Low dose oral cyanocobalamin (BNF, 50 μg) is licenced within the UK and may improve serum cobalamin and biochemical markers in borderline cases. Their role in the treatment of subclinical deficiency is under active research. Care must be taken if low dose supplements are prescribed, as such an approach risks the suboptimal treatment of latent and emerging pernicious anaemia with possible inadequate treatment of neurological features.

this applies to cases where the deficiency is dietary rather than absorption problem.

1000 mcg IM (intramuscular) is recommended for cases where there is an absorption problem.

If you are finding that you need much higher doses than 50mcg orally that implies that your problem isn't just dietary but that you have a latent absorption problem

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Hi Gambit, I have made research but it looks like when you have neurological symptoms you need to take 1000 mcg/day whatever the reason.

You can have a look at Sara's case here: b12deficiency.info/case-stu...

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Mary - I don't think that your problem is just dietary - I think you probably have an absorption problem as well.

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Means i used to have nonveg 1 time a week....until now...

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Were you not eating animal and milk products before as they are the only natural sources of Vitamin B12 in food?

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Hai...i am not from u.k i am from india...i have thisproblem since 2013 September..

From that day my golden days were gone....

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Thank you

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I used to eat but i dont know why i am having these symptoms. Nonveg 1time per week

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B12 is only found in animal products - meat/fish/dairy/eggs. If you don't have any of these in your diet then you will become deficient - but it generally takes a very long time because you will slowly use up reserves in your liver.

A dietary deficiency can be treated by taking 50mcg supplements for a few months.

It will take a while for the symptoms to unravel though - particularly if you had macrocytic anaemia. Once corrected then you only need to take a daily supplement of 2.5-5mcg to ensure that you are getting enough as you will have rebuilt the reserves in your liver and so that will be able to regulate the amounts in your blood again.

If upping the amount of B12 in your diet or taking that strength of tablets isn't working then it would suggest that you have an absorption problem.

The most effective way of treating this is to by-pass the gut as a way of getting your B12 - eg injections. If you have an absorption problem then treatment will be for life. Having an absorption problem also means that you can't effectively access any reserves in your liver as the mechanism for releasing these is the same as the one you use to absorb B12 from your food.

Just eating meat/fish/egg/dairy once a week is unlikely to be enough to maintain your B12 levels if your problem is dietary.

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suggest you speak with your doctor - you could get tested for the most common causes

PA, coeliacs, crohn's, h pylori infection, tapeworm infection - last two are treatable so wouldn't require maintenance doses after the problem has been resolved.

Test for PA - usually IFA isn't a particularly good one - and doesn't actually rule out PA as the cause - so really back to whether lower dose supplements are resolving the problem or not.

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there are also various drug interactions that can affect B12 absorption - such as the use of PPIs to treat acid reflux etc.

The symptoms of low stomach acidity (another thing that will affect B12 absorption) are pretty much the same as those of high stomach acidity so it may be that a PPI is making your problem worse if you are taking one.

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I will check up for IF...

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Yes, best way is B12 injections.

If doc don’t give you just buy them, I bought 100 for £58 from Versandapo site.

You need 6 injections for loading dose.

3 per week for 2 weeks eg

Mon/Wed/Fri (miss weekend)

Mon/Wed/Fri (That will be 6)

Then take 1 per week for 10-12 weeks.

Then reduce to 1 per month.

Order injections (online) from versandapo site.

Syringes and needles (from Amazon)

Learn how to self inject from YouTube. It’s easy in to thigh muscle.

Take 1 tablet daily of Folic Acid (400ug) as it works together with B12.

Make sure your Vitamin D and Iron is not low and in good range.

(I’m not a doctor but I’m expert in B12 through own experience) of same problem.

You’ll be back to normal in 2-3 months.

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You can further reduce to 1 every 3 months after that depending on symptoms.

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Hello Ryaan i m 22 years feml old from india.. I also had b12 def because of poor nutrition... Its almost 5½ mnths but i dnt feel much better like i hv neurological symtpms (balance /dizzy)

u say 6 loading dose then reduce weekly for 12 weeks then mnthly and daily folic acid.. My neurologist strt treatment exactly lik u say...

But My balance/dizzy is still there even worse day by day 😢 wht should i do..

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Hi

What type of B12 injection are you using?

Cyanna, Methyl or Hydroxocobalamin?

How many injections have you had ?

You’re not using Methylfolate by any chance ?

Hydroxocobalamin is the best form to use, you should be using 1ml Hydroxocobalamin injections together with 400ug (1 tablet) Folic Acid daily from start of treatment.

Have you had 6 loading doses and 1 injection per week regularly. You don’t reduce that until there is good improvement in your symptoms.

(Also after loading doses don’t use 1 injection daily (that can be overdoing it), use 1 weekly and make sure it’s 1ml Hydroxocobalamin.

If you’ve been using any other form then switch to Hydroxocobalamin.

How much you recover depends on how bad your symptoms were and how low your B12 was and also how much damage has been done.

Have you had blood test for Thyroid function as underactive or over active Thyroid can have similar symptoms and also be the cause of Anxiety.

If you have a Thyroid problem then you need to take meds to get it in control.

You need to change your diet and have a good balanced diet especially if you’re vegetarian because natural B12 comes from meat, chicken, fish, eggs etc (google foods containing B12) and have veg and fruit (green veg and fruit I s source of Folic Acid).

Your Iron needs to be in good range so include iron rich foods or take a supplement for Iron but don’t take a high dose as too much is no good from supplements. (Take a daily recommended dose).

You can have an absorbtion problem and ask doc to do tests as to why you were deficient in B12. Intrinsic Factor test (IFA).

You can get blood tests for any intestinal disorders. H-pylori infection, Celiacs disease and Crohn’s disease (inflammation in the stomach) which can cause absorption problems. (If you have Celiacs then you need to go on Gluten free diet as body can’t break down Gluten in your diet). You need to rule out these.

Dizziness or balance problems can also be from lack of B12. (neurological problem) or something simple as low blood pressure.

So if it doesn’t improve with B12 and happens when you get up from sitting down that can be just low blood pressure.

If blood pressure is ok, then you might just have to try meds for Vertigo (dizziness), that is if you can’t find the cause.

Take a good multivitamin tablet daily for 4 weeks and see if there’s any improvement in things.

It’s important to use Hydroxocobalamin injections.

Get a full blood test done again to see if anything is low such as Iron (ferreting) or Folte (Folic Acid), H-pylori, celiacs, chrons disease.

Try including a couple of bananas in you’re diet as they’re good source of potassium. which is good if you have B12 problems.

If you’ve been using anything other than Hydroxo for B12, that could be the problem.

Some people can’t absorb Folic Acid so if you’re low you need to take a different form (Folinic Acid) which is found naturally in foods and is the active form of Folate.

The dizziness can be from nerve damage from lack of B12.

Sounds complicated but you need to have all the above tests in the next few weeks.

I can’t think of anything else which can help, so get busy doing the above and I hope you feel better.

Youre welcome to contact me if you want to ask me anything anytime.

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Hai ryaan...now i am in a position that i am not able to study your message completetly...if possible....can you add my whats app number...9133724875....

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I m in india.. Hydrox is not available i m. Using methyl .. My all reports are normal.. Nd i m taking folic acid daily.. I eat bnanas daily.. Now i m on mnthly injection

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Hi, I'm from India... I have been facing some similar issues from last 2 months. Fast heartbeat and problem with focus.. These were the initially symptoms. Went to doctor, a heart specialist. Had lipid profile test. Came to know total cholesterol 197, ldl 103, hdl 55, trygl 160. Doctor suggested for normal ecg.. Nothing wrong was in ecg, just a rapid heartbeat. He prescribed one tablet for heartbeat and one statin tab to reduce the cholesterol level for 15 days. But I felt some symptoms like pain in thumbs and toes.back in thighs, leg muscles. Like stabbing and nailing. These symptoms are now worse. Too much pain in every nerve in the body. Yesterday I went to the lab for more tests. Vitamin d was 50. 10ng /ml.. B12 was 220 pg/ml.. Yesterday cholesterol report was effected due to non fasting blood sample. But ldl was 120 and hdl was 55. So today I started b12 shot. Vitcofol composition folic acid 15mg/ml+nicotinamide-200mg/ml +cyanocobalamin 0.05 mg. Do I'm taking right shots? I'm also taking 2 tabs of b12 neruobin Forte. Please reply.

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