B12 deficiency....severe....please help

[Shivax1x1]

Last year in November I came to know. That I have vitamin b12 deficiency (159) then I saw a physician she gave me the treatment and I got relaxed (pin and needle ) .but one month ago I felt the problem again and took a test and now level is 149. Doctors are taking it casually .even one of them said them you just have anxiety so gave me some bp and sleeping tablets.10 days ago I started to go to gym ,after then my condition is getting worst.all day I have sudden headache and ranom high intensity body pain .as I read on internet I quit the gym.I am taking the supplements OPTINEURON FORTE TAB but getting no relax...please help me out...and suggest me that whom should I meet whether a neurologist or any other...reply asap.....in CBC test my rbc are sufficient..

[Secondchance]

Where are you based? The guidelines in the UK recommend treatment below 200 and if there are neurological symptoms that should be alternate days hydroxocobalamin injections im until no further improvement, followed by 2 month maintenance. How much treatment and what treatment did you have last time?

If you have had no supplements and can see a neurologist very soon then try to and see if they will check your MMA and homocysteine and active B12 levels. This will help confirm B12 deficiency. You should also have intrinsic factor and parental cell antibodies checked to see if you may have pernicious anaemic (one cause of B12 deficiency)

Good luck!

[Shivax1x1 in reply to Secondchance]

I am an Indian guy. I am having two doses of 15 mcg each per day. And now a days I am suffering with irritable ,repetitive ,inflammable headache and random body pain with chest pain ....is it good to meet a neurological??.... Even rbc are sufficient then also can I have pernicious anemia???

[shevie]

May I ask, are you Hindu? If you are, I believe you may be vegetarian, is that right? Where do you live? If you are in India, the doctors there should understand it a bit better than here in the UK. If you are in the UK then you should be given a shot every other day until there is no further improvement, then every 8 weeks. In some areas of the UK your levels have to be lower than 200 before you get treatment. I am in the Borders of Scotland and here it is only below 160. Try to insist on seeing a neurologist or a haematologist as soon as possible. It is possible to have PA and still appear to have normal levels so MMA and Homocysteine tests are a good idea

[Gambit62 Administrator]

When you say you were treated does that mean that you had a series of shots and have had nothing since?

It certainly does sound as if you have a problem absorbing B12 - being vegetarian does seem to put you at greater risk of developing a problem. If you are vegan and your doctor is treating the problem as if it was dietary then this won't work if you also have an absorption problem. You will just use up the B12 from the injection but won't be taking in enough from other sources.

If you have an absorption problem then you will need to have regular maintenance shots as well as the 'loading shots' that are meant to build up your levels quickly and allow some damage to be repaired.

Anaemia and deformed red blood cells are a symptom of B12 deficiency but they aren't always present, particularly if folate levels are good. Not showing any signs of anaemia doesn't mean that you don't have a B12 problem that needs to be corrected quickly especially as you are suffering from neurological problems.

15mcg per day is about 6x the recommended daily intake of B12 but if you have a problem absorbing B12 this isn't going to be anywhere near enough. Some B12 is absorbed passively outside the ileum - about 1% - so it is in theory possible to flood the gut and get enough B12 to keep going but you would need to be taking around 20 of the tablets you are currently taking to be getting enough to meet your daily need and would need even more if you are to correct the current deficit.

You use up more B12 if you are physically active which is probably what happened with the experience of going to the gym - so you might need to try even bigger doses

Unfortunately the tests for PA aren't particularly accurate and people can have the test done several times before it finally show up that you do have PA. PA isn't the only possible cause of an absorption problem. Others include

a) lowering levels of acidity in the gut as you get older

b) genetic deformations affecting the ileum

c) gastric surgery

d) drug interactions - though you don't mention any specific drugs. One common interaction that actually makes a bad situation worse is treating acid reflux (which could be caused by B12 deficiency) with anti-acid medications - includes zantac and omeprazole.

Alternatives to injections if getting these is an issue include sublingual tablets and sprays, nasal sprays and skin patches but you really need to be taking at least 1mg (ie 50 x the amount that you are currently taking).

B12 isn't toxic though some people do experience some reactions to it but if you didn't experience any adverse reactions when you had shots (assuming you did have some loading shots) then that won't be an issue.

Hope that you manage to get some respite soon.

[Polaris]

Some doctors do not understand the seriousness of B12 deficiency but many Indian doctors do, having had experience of the symptoms in the Hindu population, where many are vegan or vegetarian and not getting enough B12 from animal foods.

Your B12 level is very low Shivax and should be treated with more B12 than you are presently getting. Here are some useful links, which I hope will help your GP understand the importance of treating more aggressively without delay:

b12deficiency.info/what-to-...

b12deficiency.info/b12-writ...

b12deficiency.info/films

cmim.org/pdf2014/funcion.ph...

Cmim/BMJ document. " Summary:

* Vitamin B12 deficiency is a common but serious condition

* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.

It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."

Best wishes for a good outcome.

[Shivax1x1]

Thank a lot Polaris and gambit. Ya gambit , I am a Hindu and vegan also. I was not given any shot yet and I just had tablets And I am not getting any reflection of those on my test report.One more thing,i shouldn't bother you that ,my tummy size is getting increased exponentially is this related to all.And I am still confused that whom should I meet neurologist or someone else(you suggest) while I am having headache and back pain ,chest pain along with my tummy size is increasing. Thanx a lot guys...please guide me to go ahead.

[Gambit62 Administrator in reply to Shivax1x1]

It does really sound as if the assumption has been made the the cause of your B12deficiency is dietary though the evidence from the fact that your B12 levels are not rising implies that there is also an absorption problem. The onus should really be on your doctor to prove that diet is the only factor before saying that treatment orally is sufficient - it shouldn't just be an assumption which seems, unfortunately, to have been the case to date.

A lot of people do experience stomach problems with B12D ... but it is difficult to say what the problem actually is from the description you have given - not sure if you are talking about feeling bloated or about putting on weight. If you are putting on weight and feeling the cold more etc that could be indicative that you also have a thyroid problem. There is a large overlap between symptoms of B12D and thyroid and unfortunately the two do often occur together so would be worth getting that checked out.

Stomach problems can from B12 can be very varied - and would include problems digesting food generally - though that can also be indicative of another problem.

What has your doctor said about the stomach?

[Gambit62 Administrator in reply to Gambit62]

In terms of specialists - recommendation in the UK is generally haematologist - but because B12 affects so many systems and these days neuro symptoms are often present without any anaemia that may not be the right call. Presume as you are vegan that your folate intake is good which would mean that you would be more likely to be having symptoms without anaemia than otherwise.

Gastro may be the way to go as you mention problems with your stomach.

Neuro is another possibility but the chances are that a specialist isn't going to be any more clued up on B12 than your GP so could be more hit than miss, but is certainly worth exploring as there could be other things going on - is a huge overlap between symptoms of B12 and a lot of other conditions and having one unfortunately doesn't rule out having others which can make diagnosis difficult.

[Polaris in reply to Shivax1x1]

My vegan/vegetarian relative was misdiagnosed with ME for years and, eventually, dementia. It was a stressful battle to be treated quickly and adequately with injections and this is essential as there is a short window of opportunity before neurological symptoms (which you have) become irreversible.

Extract from the BCSH guidelines:

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

The BMJ research document above has information on when to refer to a specialist, if your doctor will read it.

The excellent film above also explains B12 def. well and why folic acid supplementation has masked anaemia and made diagnosis more difficult over the years.

Our family also has a history of autoimmune disease, often interlinked with B12 def. and originating in the gut - 'the ground zero' of autoimmune disease. I've found avoiding gluten and taking several helpings of Saukraut a day has really helped heal stomach issues.

[Secondchance]

It doesn't really matter what the cause of your deficiency is at the moment. It is the same treatment if you are symptomatic. You sound like you need to see another doctor and get mma/homocysteine checked and injections. If that helps it will confirm. Then they can investigate if there is another cause. It may be dietary in which case you may need to take tablets long-term if there are no absorption problems. If absorption is an issue e.g. Positive intrinsic factor or parietal cell antibodies or other gut condition then lifelong injections.

[Shivax1x1]

Thanks a lot for your prompt responses. whatever we discussed earlier was about b12(cynocobalamin) .i doubt that i may also have deficiency of b12(methylcobalamin).Could you please tell me that what is the normal range for methylcobalamin?

[Secondchance]

b12 serum test measures all b12 in blood. It does not see a difference in cyanocobalamin, hydroxocobalamin or methylcobalamin