Vitamin b12 treatment - the symptoms are coming back

Hi, guys. I'm Brazilian and new here. I'm not expert in english so I'm sorry about the grammar mistakes I'll make. Like everyone here, I really need help with this. I'm 21 and 7 years ago started to feel B12 deficiency symptoms. In all my life I used to have really good memory, atention e capacity of concentration, but it changed a lot since I started to feel this deficiency. It was gradative. In the beginning I started to forget some names in conversations and things like this. After that, I lost a few of attention capacity e then concentration. I couldn't wake up early, it was too hard for me. I searched a lot and found out I had b12 deficiency. I went to a neurologist, but he said I had nothing. I started Mechanical Engineering and had a lot of problems in college, but when I was finally ready to overcome all this problems caused by the deficiency, I got worse again. I felt really bad, even knowing what was happening to my body. I looked for another doctor, he said I didn't have b12 deficiency and prescribed folic acid and antidepressants for me. I've never taken it, except the folic acid. After that, I decided to take b12 injections by myself. I started with 5000 mcg weekly, but it didn't work fine because I wasn't doing it correctly. Then, I did some exams by myself, like Homocysteine and Metilmalonic acid. The first one wasn't to high, but the other was really high. From this moment, I was sure about the deficiency. I went to another doctor and he didn't know anything about it. After that, I started to read english articles about b12 treatmet and started to inject 1000 mcg daily for one week and then weekly for one month. One week I started the treatment, I felt really amazing. I felt it was me again for about two weeks. But, gradative some symptoms started to come back again. I started to take folic acid 5 mg daily and felt better again (I've already taken 14). But one month I started it, I was back to square one, feeling all the symptoms again. One week ago, I took an injection and feel better, but now I'm not fine. My iron and potassium levels are good, I took exam some weeks after I started the treatment. Again, I'm sorry about the language mistakes, but I need help. What should I do? What do you think about it? Thanks, everyone.

8 Replies

  • Hi viniciuspaiva08,

    Firstly congratulations on your excellent English and welcome to this community.

    I am not a medically qualified person but as I understand it loading injections for B12 deficiency should be given until the symptoms are gone but there are others on here who will be able to advise you further.

    You were very young to develop B12 deficiency but it is not unknown. 

    What sort of diet do you have as the only natural way of obtaining B12 is by eating red meats, fish, poultry, eggs and dairy products together with folate obtained from leafy green vegetables.

  • Hi! 

    Your English is brilliant - well done! 

    I'm afraid you might be like some of us who have to keep up more frequent injections and take additional cofactors of a good multivitamin and mineral supplement plus extra folate, potassium and magnesium for the rest of your life.  I self inject daily, for example. 

    For more information you could look up my profile and see my post " My Experiences ".  It includes a link to a Facebook support group which you might also find useful.  

    You have done so well so far and I wish you every luck in the future.  Please keep in touch!  

  • Perhaps the PAS (Pernicious Anaemia Society) may be able to pass on some useful info. I don't know if there is a charity/support group for people with PA in Brazil. The PAS has members from around the world. Lifetime membership costs £20.


    01656 769 717 Office open from 8am till 2pm UK time

    There is also an e-mail contact on this page pernicious-anaemia-society....

    UK B12 websites

    Useful b12 books

    What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper

    I gave a copy of the above book to my doctors.

    "Could it be B12" by Sally Pacholok and JJ. Stuart

  • Hi viniciuspaiva08,

    Your English is very good!

     My suggestion, keeping in mind that I'm not a medical professional, would be to increase the injections to twice a week and see if that helps. If it doesn't try 3 times a week. And so on. 

    I was injecting one mg of methylcobalamin 2 times a week but have gone through a lot of stress lately connected to a flare up of another auto immune condition I have. I now find that I have to inject 3-4 times weekly. I am going to check in with my doctor to see if an auto immune flare up increases the need for B12 but considering the way I feel, at least for me it does. The good news is that a person cannot get too much B12 so it's safe to increase the injections until you find the right level for YOU.

    Good luck! :-)

  • Protocols for treating B12 vary depending on the country and type of B12 used.

    In the US they tend to use cyanocobalamin - in the UK we use hydroxocobalamin.

    People respond very differently to different forms of B12 so it is worth trying different forms - including methylcobalamin and adenosylcobalamin if you can find sources for them.  You can also try different formats of delivery - ways that try to use membranes outside the gut such as sublingual tablets and sprays, nasal sprays and skin patches.

    You may want to try looking into MTHFR (some genetic variations that affect how well you methylate some vitamins to forms that the body actually uses - this includes folate and sometimes affects B12).  Depending on which genetic variations you have it can reduce your ability by 30% to 70%.

    You might also want to look at functional B12 deficiency.  As you have probably figured out  you can have high levels of B12 in your blood but still have none or very little of it getting through to your cells.  This seems to be down to an auto-immune response to high levels of B12 in serum (blood) which creates a protein that binds to the B12 in the blood stopping it from passing to cells where it is needed.  One study in Denmark implied that 40% of the population have this response.  For some people lowering dose levels can help but for others it seems that the most effective treatment is to keep B12 levels so high that the body cannot produce enough antibodies to stop all of the B12 getting through.  Pretty sure that I fall into the group that has the response and need really high levels of B12.  I take more than 1mg a day - but mainly use a nasal spray. I treat myself based on my symptoms and if they are returning and would suggest that you try following the same strategy rather than trying to follow any specified protocol.

    Protocols are based on averages and unfortunately there are so many variations with B12 that significnat numbers of people fall significantly outside 'normal'.

  • Hey, guys. I'm really happy with your comments. Sharing informations with you is very important for me, mainly because you have experienced this and are able to understand what is going on. Thank you. I believe that's about a genetic problem. My mom has exactly the same symptoms for longer, but she doesn't think I'm right. I think my grandma had the same... Like I'm almost 22, the symptoms began when I was 15. Yesterday, about one week from the last one, I took an injection of B12 and I'm feeling better today. It's not the peak of the treatment, like the first week, but I'm a little better. I forgot to mention that I'm taking cyanocobalamin. Last week I bought one hundred sublingual tablets of Methylcobalamin from USA and I think it'll be easier to treat myself when it arrive. I'll try everything you mentioned. Like I'm already know about the potassium and etc, I think I'm able to do this. I don't matter of taking injections or things like this everyday. I just want to feel good again. Thank you everyone.

  • Hope you do get to the bottom of it.

    some people do find that methylcobalamin doesn't do much if anything for them - one possible reason for this is that some people have a genetic problem converting methyl to adenosyl and the body needs both forms of B12 for different functions.  I find methyl does nothing for me when it comes to my neuropsychiatric problems but hydroxo does so suspect I'm one of those.

    it's really good that you are open to experimenting - just keep trying different things until you hit on the combination that works for you.

    There do seem to be some genetic links with PA - one possible cause of B12 problems - and there is a significant correlation with blue eyes and premature greying.  MTHFR problems are obviously genetic in nature - with 2 sets of genes involved and different combinations of the genes having different impacts on the way the body methylates and hence what really helps in the treatment.

  • Hi viniciuspaiva08,

    Show your Mom how much better you feel after injections or supplements (when you get them) and get her on the same treatment as soon as possible and start enjoying life together again.

    I was first diagnosed with P.A. (44 years ago yesterday) having had stomach surgery at the age of 17.  I've been on cyanocobalamin B12 injections every four weeks ever since and I'm still "clivealive" coming up to 75 next month.

    I wish you and your Mom well for the future, and success for you in your studies

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