How much time? Please tell

[Ashishk]

My b12 level is 147....after struggling for a long time and not being diagnosed by anything. finally this b12 issue has come across...can somebody tell me that... How much time it takes after injections to get better ??? My doctor has prescribed me optinuron injections..

[Gambit62 Administrator]

The way people respond to B12 varies a lot

To some extent the time it takes before you feel better will depend on exactly what symptoms you have.

The injections you are being given are actually a mixture of various B vitamins.

Generally people notice some improvement in symptoms quite quickly but other symptoms may take longer to improve. If you have macrocytosis (a form of anaemia) that will take a couple of months to clear as the role of B12 in that is in the production of new red blood cells that are not deformed as the ones currently circulating in your blood die out - so likely that symptoms related to macrocytosis will take a couple of months at least.

Unfortunately there is no guarantee that all symptoms will go - if you have been deficient for a long time then neurological damage (B12 is important in maintaining the protective sheath around nerve cells that enables them to function efficienetly) may be irreversible.

Are you in India? Notice that optineuron seems to be used there as a treatment of choice. B12 is only found in animal products so a diet that contains no/little meat or dairy can cause a B12 deficiency - if the cause is dietary then you just need to build up your stores of B12 again. However if it is the result of a problem in the gut absorbing B12 - Pernicious Anaemia is one possible cause of such problems - then you won't be able to build up normal reserves so will need to have periodic injections once levels in your blood have been built up - though what matters with B12 isn't the amount in your blood it is what is going on at the cell level.

Hope that you start to feel some improvement soon. Might be a good idea to make a note of all of your symptoms and then keep a diary to monitor changes.

you can find a list of symptoms here

pernicious-anaemia-society....

[Ashishk in reply to Gambit62]

Thanks for such an informative reply. Actually I want to ask that whom should I approach? My gastro doctor said that go to neuro department.

[Gambit62 Administrator in reply to Ashishk]

B12 deficiency affects a lot of systems in the body so I would go to whichever fits with the symptoms you have that are bothering you most and if that is neurological problems then referal to a neuro would seem best

[Ashishk in reply to Gambit62]

actually things started after i had stomach pain in december 2014. My doctor prescribed me antibiotics and the course got extended for almost 27 days. The diet was not proper at the time i was taking these antibiotics. Then after a week i was caught by cold and fever . Then one day iI started felling dizzy and weak. then the things were getting worse day by day. But the thing was NOthing was there in the reports. we went for the MRI scan also everything was fine. every normal blood test , ecg everything was normal. 2015 came, still nothing in our hands. then i started felling better as the summers approched, but still was in lot of problem. Then when winters of 2015 started again things started happening, like weakness, cold feets adnd hands, some flickering of nerves type stuff, stress, loss of apetite walking problem. then 2016 came. finally in june someone told me that go for a b12 check. And the level came up as 147. now optinuron is given for per day for first week and then weekly for one month. Along with it oral tablets are also given including folic acid. actually as i remember everything changed after that course of antibiotics for stomach infection.

[Gambit62 Administrator in reply to Ashishk]

some anti-biotics can affect B12

healthunlocked.com/pasoc/po...

so that may be what started it off. Sounds like you may have had h pylori - which I think means that your stomach acidity would have been low and that would have lead to a deficiency. People vary quite a lot in how much B12 they need to function so it can take years for a full deficiency to occur - there are problaby some symptoms that have crept up on you over time that you just haven't noticed - and then it tends to snowball as the deficiency really starts to kick in - which would sort of fit with what you describe

I presume you aren't based in the UK - would be useful to know where you are based as treatment regimes do vary from place to place - in the UK it is all referals to haematology.

Back to working out exactly what all of your symptoms are.

Your gastro is only going to be able to deal with the gastric elements of what is wrong and personally I think that referral to a neurologist in relation to the balance issues and the other symptoms you describe would be a good move.

[Ashishk in reply to Gambit62]

NO i am from India

[Gambit62 Administrator in reply to Ashishk]

Thanks for confirming that - suggest that you go with what your gastro has suggested -

awareness of B12 deficiency is much better in India than it is in the UK - partly because dietary deficiency is more likely.

[Ashishk in reply to Ashishk]

I just want to ask that i am just 21 years old. I have a lot of things to do in my life. When not knowing anything about this field, lot of things comes in mind like what i was and what has happened now. Though I am strong and i have faced 5 time worse condition than what i am today. But i do wana ask that I will get Fine ????after the treatment...sometimes all thesee things scare me,because i have to work really very hard and do things for me and my family

[wedgewood]

Have you been tested for the antibodies to the Intrinsic Factor? If not , why,not? We all know that the I F test is unreliable but it is a start . It is about 50 % right ! Your level is very low . There are 2 other tests which the NHS doesn't really use .

Optinuron is not the usual treatment for PA or vitamin b 12 deficiency . I also note that the b-22 used in it is CYNOCOBALAMIN which is the first artificial version of b12. It has had now more or less been abandoned in favour of Hydroxocobalamin , which is what is used by GPs .

Anyhow I would want to know if I had PA . If you do have it , it means life long treatment .

Best wishes to you .

[clivealive Forum Support in reply to wedgewood]

Cyanocobalamin is still in use in the UK wedgewood one difference between that and Hydroxocobalamin being the frequency of injections at every four weeks as opposed to twelve.

Hydroxo is considered "superior" to cyano but when I was tried on it in the 80's I had some nasty side effects, couldn't "last" the three months and was put back on the cyano, which I've been having for nearly 45 years.

Ideally the NHS should provide us with methylcobalamin injections.... - I can but dream.

[Gambit62 Administrator in reply to clivealive]

as methyl doesn't work for everyone - not the best for me - and NHS tends to be one-size fits all - personally rather glad that it doesn't offer methyl.

What they should offer is treatment that is tailored to the needs of patients but I can't see that happening without some major changes in attitude.

[wedgewood in reply to clivealive]

Thanks clivealive, I didn't know.

[Ashishk in reply to wedgewood]

No I haven't been tested for anything else...just this b12 level...main issues being dizziness, body fatigues, weak legs, little confusion type stuff nd problems while walking(main). Although I m feeling better from last 2 3 months, but since it has been a long time I am.curious to know how much time it takes

[ndodge]

Hi Ashishk,

I had the same symptoms you have except my B12 level was 290. I'm not a doctor but I think that the more B12 you get into your system, the better you will feel. So after your injections, you should show improvement.

It might take some investigating to learn why you are low in B12. That would be good to find out!

The main thing is lots of people have a chronic B12 deficiency, for whatever reason, and if you get B12 on a regular basis, that is the cure! Clivealive has had Pernicious Anemia ( chronic low B12) for 45 years and is still going strong.

Another important thing is for you to be communicating with your doctor about how you feel. If you don't feel better then you can talk to her/him about maybe trying a different form of B12 or B12 injections more often. Don't give up hope! And don't let your doctor ignore your symptoms or not give you the time and attention you are entitled to.

B12 deficiency is treatable. It might take some experimenting with the different forms of B12 to find which form works best for you but cyanocobalamin works really well for a lot of people. Adenosylcobalamin, hydroxocobalamin and methylcobalamin are the other forms besides the cyanocobalamin.

You are young and do have a full life ahead of you. With proper B12 in your system, you should feel much better!

Please write in again to let us know how you are getting on. Best of Luck!

[Ashishk in reply to ndodge]

How long it took to recover...after you were diagnosed with this..?..nd how long u were like having problem but this was not diagonosed

[ndodge]

I was not diagnosed for about 2 years after I started having symptoms. I started on Cyanocobalamin once a month for a year but this form was not effective for me, so really I did not start feeling better until I started on methylcobalamin and I started feeling better right away-however I started on once a month and had to increase my dose to feel consistently better. All my symptoms are gone now except I do get tired unless I get an injection every other day. I have ringing in my ears which also is the last symptom to go. after an injection, the ringing goes away. I am hoping that as time goes on, the ringing will go away for good.

I found out I needed injections a lot more often, as many people do. I get a prescription from my doctor and self inject 1mg/ml. It is a very individual thing- some people are fine with once a month on the cyanocobalamin which is what you are probably getting as Wedgwood's research showed.

You might want to start taking methylfolate- a form of folate, available online like on Amazon or in some stores. Not sure what the situation on that is in India. But as I just learned from fbirder you might need the methyl folate to help the cyanocobalamin do its job.

Your level was lower than mine so it might take a little longer.

How often do you get the injections? How long have you been getting them?

[Ashishk in reply to ndodge]

The injection that are being given are named as optinuron...I have taken 7 injections till now in one week..na dnow I will take them weekly. It has hardly been 12 days since I took my first injection. I am also taking oral tablet including folic acid...

[Ashishk in reply to ndodge]

You said that you had same symptoms that I am having...so u had problem while walking also...nd dizziness....nd little confusion type stuff...not that much..but still present...????

[ndodge in reply to Ashishk]

Yes, I was dizzy, had trouble walking in a straight line, sometimes had to hold on to walls to walk correctly. Fatigued all the time, burning tongue, and and hands falling asleep too easily, burning feeling in toes, muscle aches in legs, and a little mental confusion.Oh and the ringing in the ears. I got better and I'm sure you will too.

Do you know how much B12 is in the the optinuron?

Do you feel any better at all?

I hope so!

[Ashishk in reply to ndodge]

Yes...it has 333mcg per injection...all the symptoms are same but ..so go better after how many days or months??? I mean the signs of improvement

[Ashishk in reply to ndodge]

I has just been almost 12 days since the start of my treatment.... I think.this is too early..but it like I have a raised level of energy..but nt that much...may b I am.expecting things too early..

[ndodge in reply to Ashishk]

Hi Asishk,

Once I started getting mB12 injections more often- like once a week, I started seeing my symptoms really improve. So, I had consistent shots for months- started out every 3 weeks , then every 10 days , to twice a week and now every other day before I felt 100% better. I always felt better after an injection but they would wear off too quickly.

I think you just need a lot more B12-I am not a medical professional and this is not medical advice , just an observation based on my knowledge and personal experience.

You are getting 333 mcgs in each injection which is 1/3 the standard dose in the U.K. and the U.S. I am in the U.S.

So, if you got one injection each day for 7 days- that would be 2,331 mcgs or 2.33 mgs. If you were in the U.K. you would get a 'loading dose" of 1mg = 1000 mcg. per injection every other day for 2 weeks-about 6 injections (not given on Saturday and Sunday) which would be 6 mgs. 2.33mgs versus 6mgs. - quite a difference.

I think you need a lot more B12 to raise your levels enough to feel much better. In my non-expert opinion, you are simply not getting enough B12!

It sounds like your vegetarian diet might be causing you not to be getting enough B12- that is actually good news because it means your body can process B12 once it gets enough. Only protein from animals will provide B12.

You can supplement with extra B12. You could try high potency B12 sublingual lozenges, 5000 mcg per lozenge. When taking B12 this way one actually gets only 1% into the cells, so you can take a lot- I have taken up to 15 of these a day. Or you could take a regular,standard B12 capsule that goes through your stomach since it sounds like your body will process it. Just get a high dose!

Amazon probably has a lot of choices. You might want to try methylcobalamin as it is good to use different forms of B12 to see what works best for you.

You cannot overdose on B12 - it is a water soluble vitamin and any extra will be urinated out. Or you could ask your doctor for B12 injections in addition to the Optinuron.

The problem is is that many doctors are not willing to change their protocols which is why I suggest sublingual lozenges or just regular B12 vitamin pills.

Hope this helps- sorry to repeat myself but I can't stress enough that I just don't think you are getting enough B12. Once you do, you will most likely see a tremendous difference!

Good Luck with it all!

[ndodge in reply to ndodge]

Hi again,

Just wanted to stress that I think, like others who have replied to you, that you should try to get a definite answer on why your B12 is so low. It could be just your diet but it could be an absorption problem or pernicious Anemia- regardless, it would be best to get a definitive answer.

You don't want to miss something that needs to be addressed!

In the case that it turns out to be because of your diet then you can supplement with more B12. But I would check everything through your doctor first.

Take care and let us know how everything goes for you!

[Ashishk in reply to ndodge]

Thanks...so ndodge have you stopped taking the injections or are you still taking them?? As you said now your symptoms are almost gone...

[ndodge in reply to Ashishk]

Hi ashishk,

I still take them and probably will for life, because I have a lot of stomach/digestive issues and my body cannot

[ndodge in reply to ndodge]

Oops! My body does not process B12 from food or capsules that go through the stomach.

I also have to take a sublingual D vitamin for the same reason. If I stopped injections my symptoms would all come back.

I don't mind, I am thankful to have the B12.

If you don't have pernicious anemia or processing problems, you might do fine getting your levels up initially and then can just supplement. But that is why why is important to find out exactly what is causing your problem with the B12 deficiency.

xx

[Ashishk in reply to ndodge]

After how much time...things become irreversible usually?

And I told you earlier that...may be that antibiotic course in December 2014 did something wrong...because after that only everything changed..

[ndodge in reply to Ashishk]

Hi Asishk,

Sorry to take so long to reply! I was thinking about when my symptoms; dizziness, unsteadiness, etc. started and I think they actually started 3-4 years before I started receiving B12 injections. And they reversed themselves! The tinnitus or ringing in the ears started much earlier about 11 years before my treatment and it is helped right after an injection but then comes back so I am not sure that can be healed completely.

Going by my experience, I would say that if you get enough B12, your symptoms will probably not be permanent. Everyone's different so I can't say that with 100% certainty but you have had your problems a lot less time than I have!

So keep positive and keep up with the B12 injections!

Take care

[Ashishk in reply to ndodge]

Thanks ndodge....

[ndodge in reply to Ashishk]

You are very welcome ashishk! Please keep us posted as to how you get on!

[Hidden]

Hi,asish.... I am from INDIA and 22year old... I can understand your fate as I have been recently diagnosed with vitamin B12 level of 103...just 15days back... Even I was prescribed with NEUROBION INJ to take twice weekly... But I took nearly 8INJ on alternate days.... Though I am feeling a little better, still my weaknesses in lower limbs persist....let's see how much time, it takes to be alright......

[Ashishk in reply to Hidden]

How long have u been suffering cena...?? And what were your symptoms... Do they match the symptoms that I have?? ...it has been the same for both of us I guess..because I was diagnosed 20 days back..nd have been given 7 injections till now...yes I too fell relieved from.weakness point of view but rest of the symptoms are there

[Hidden]

Yes,your symptoms r quite similar to mine... What I want to know is that are you a pure vegetarian?? Are u having intermittent loose stools?? Had u ever had any gastric surgery?? Or any family history??

[Ashishk in reply to Hidden]

Yes i am vegetarian...I used to eat eggs long time ago, that too not regularly.. Nd I don't have loose stools right now..but u had them few months back, when my condition was worse than what it is now..but I wasn't diagnosed at that time...nd no such family history...or any surgery....as I said everything changed after the course of antibiotics in December 2014....

[Hidden in reply to Ashishk]

Then your vitamin deficiency must be a reason of your diet.... It will not be referred as pernicious anemia..... So don't worry...

[Ashishk in reply to Hidden]

Hope so...but still 145 is very low...nd may be i am having lots of issues just because it has been for such a long time...though everything is gonna get better one day....

[Ashishk in reply to Hidden]

Where are you in India???...I ma in Delhi...and what are you doing...I think you are also a student...

[Hidden in reply to Ashishk]

Ya,,I am also a student in ODISHA..