imapumpkin Posted August 19, 2013 Report Share Posted August 19, 2013 So several days ago I posted about how much my injections of vitamin B12 were changing my life, drastically improving my energy level and combating my fatigue.The very next day after posting this (serves me right) I developed a rash at my injection site right after taking my shot. I called the doctor's office and the nurse I spoke with told me I had developed an allergy to the injections and I would need to stop taking them altogether. She said it happens to about 10% of patients taking the shots and that like me, most of them took several doses before showing any signs of a reaction. I took my last shot last Monday and had a few days riding out the last of it in my system. Now it is completely gone and I feel like I've once again hit a wall.I cried when I found out I couldn't take my shots anymore. Loud, hysterical, sobs of despair because for 2 whole weeks I felt almost normal. I felt like I was getting my life back. I felt GOOD. Now that I know feeling good is possible it seems so cruel that my apparently miracle treatment be taken away from me.My doctor told the nurse he now wants me to try the sublingual B12 which I am perfectly happy (and frankly very eager) to do, but didn't tell me what dosage to try so I must find out. But I've heard conflicting things about how effective the sublingual version is compared with the injections. Does anyone have experience with the under-the-tongue version? Has anyone tried both the injection and the sublingual and compared the two? I am hoping so hard that the sublingual ones are even partly as effective as my shots. Wondering if anyone has any encouraging experiences with them. Quote Link to comment Share on other sites More sharing options...
issie Posted August 19, 2013 Report Share Posted August 19, 2013 I'm vegan and was told to use at least 1,000 mcg per week. Sometimes I use it once a week and other times twice. I also use the methyl form of it. Issie Quote Link to comment Share on other sites More sharing options...
AshleyPooh Posted August 19, 2013 Report Share Posted August 19, 2013 Oh my gosh you developed an allergy to it? That really... is not cool. I hate when that happens. I do the same with food sometimes. I ate watermelon all of my childhood, then slowly began to have issues like sneezing and itchy throat. Now I'm at the point where I can't even smell the darn thing without symptoms, it's ridiculous! Allergies to medications though are pretty bad, because sometimes you really need them! I hope the sublingual works for you! Quote Link to comment Share on other sites More sharing options...
davecom Posted August 19, 2013 Report Share Posted August 19, 2013 I've seen these supplements with extreme oral dosages - like 25000 mcg. Even 1000 mcg is so high above the "100%" USDA need... is it safe? I am interested in maybe adding B12 supplementation to my regimen, since my multivitamin has like 2.5 mcg... Quote Link to comment Share on other sites More sharing options...
issie Posted August 19, 2013 Report Share Posted August 19, 2013 FDA suggestions are for the bare minimum a person needs to maintain health and not have a major issue from lack of something. The suggestions are not for optimal health. Some vitamins are water soluable and other fat soluable. If they are water soluable and you don't need them - you have expensive pee. If it's fat soluable it can build up in the body and those you have to be more careful with. The only thing with B12 that I know of that you would have to be careful about is in regards to methylation pathways and if your body breaks things down properly. Also, some have a problem with metabolizing due to a lack of intrinsic factors. I can't take the regular type of B12 - it makes me feel sick. But, the methyl type seems to be okay. Some people don't do well with folic acid either and yet they may have a deficiency in it. There are things that can be done to get this pathway working better and then one can utilize the vitamins needed better. Lack of B12 is associated with prenicarious anemia. http://en.wikipedia.org/wiki/Pernicious_anemia Issie Quote Link to comment Share on other sites More sharing options...
sue1234 Posted August 19, 2013 Report Share Posted August 19, 2013 I am one that takes the B12 injection and never got any results with oral B12.My question is, you were taking the injection everyday for how long? Normal when starting it is taking it maybe everyday for a week, then once a week for a few weeks, then monthly. Maybe it's possible you were just taking it too often for your body?? Maybe letting it get out then restarting it and taking less often might be okay? Of course, ask your doctor!Another thing is, with you taking it so often, did you have the large, multi-dose vial prescribed to you? If so, those contain preservatives to help them last months and months. Maybe switching to a single-dose vial for each injection would give you a different outcome.Just a few things to think about. Good luck and I hope it gets figured out! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted August 19, 2013 Report Share Posted August 19, 2013 Sorry, just now reread your old post about having pre-filled syringes. Find out if there is ONLY the red, B12 liquid in them or if there is something added to the mixture. I am not familiar with pre-filled syringes, only vials. Quote Link to comment Share on other sites More sharing options...
davecom Posted August 19, 2013 Report Share Posted August 19, 2013 Hi Issie,Thanks for the resources. I've actually read about pernicious anemia before and somewhat about B12. I went through my old blood test records and found my level was 487 back in December and 700 in March (normal 200-1100), so on the surface seems like this is not related to my small fiber neuropathy issue. However, I've read that these tests can be false normals... Given that they are normal though I'm not sure it's at the top of mind for me - I guess the loading test would be a next step if I wanted to explore it further.FDA suggestions are for the bare minimum a person needs to maintain health and not have a major issue from lack of something. The suggestions are not for optimal health. Some vitamins are water soluable and other fat soluable. If they are water soluable and you don't need them - you have expensive pee. If it's fat soluable it can build up in the body and those you have to be more careful with.The only thing with B12 that I know of that you would have to be careful about is in regards to methylation pathways and if your body breaks things down properly. Also, some have a problem with metabolizing due to a lack of intrinsic factors. I can't take the regular type of B12 - it makes me feel sick. But, the methyl type seems to be okay. Some people don't do well with folic acid either and yet they may have a deficiency in it. There are things that can be done to get this pathway working better and then one can utilize the vitamins needed better. Lack of B12 is associated with prenicarious anemia.http://en.wikipedia.org/wiki/Pernicious_anemiaIssie Quote Link to comment Share on other sites More sharing options...
imapumpkin Posted August 19, 2013 Author Report Share Posted August 19, 2013 sue--i thought of that too, that maybe i was taking them too often and when i see the dr again (not til the end of october he's booked solid til then) i'll ask if it's something i could inject once a week or even go there to receive a deep muscular injection as opposed to the little needles i was using but not nearly as often. I'm pretty sure the syringes only had b12 and no preservatives as the box said discard after 28 days and they were kept in the fridge until use. Quote Link to comment Share on other sites More sharing options...
LMG Posted August 19, 2013 Report Share Posted August 19, 2013 There are other forms of b12. I used to take cyanocobalamin form in injections many years ago and it helped. It didn't when I resumed them for the fatigue of POTS. My NP suggested the compounded methylcobalamin and I think it helps some. I have done some reading and some MDs prefer hydroxycobalamin so maybe that form would be ok for you. I do have a friend with fibro who takes methyl b12 sublingually, in 5000 mcg pills, and she says it gives her some extra energy. Keep trying and hope you will figure out a way to get it back into your system since it helped you so much! Quote Link to comment Share on other sites More sharing options...
issie Posted August 20, 2013 Report Share Posted August 20, 2013 Hi Issie, Thanks for the resources. I've actually read about pernicious anemia before and somewhat about B12. I went through my old blood test records and found my level was 487 back in December and 700 in March (normal 200-1100), so on the surface seems like this is not related to my small fiber neuropathy issue. However, I've read that these tests can be false normals... Given that they are normal though I'm not sure it's at the top of mind for me - I guess the loading test would be a next step if I wanted to explore it further. FDA suggestions are for the bare minimum a person needs to maintain health and not have a major issue from lack of something. The suggestions are not for optimal health. Some vitamins are water soluable and other fat soluable. If they are water soluable and you don't need them - you have expensive pee. If it's fat soluable it can build up in the body and those you have to be more careful with. The only thing with B12 that I know of that you would have to be careful about is in regards to methylation pathways and if your body breaks things down properly. Also, some have a problem with metabolizing due to a lack of intrinsic factors. I can't take the regular type of B12 - it makes me feel sick. But, the methyl type seems to be okay. Some people don't do well with folic acid either and yet they may have a deficiency in it. There are things that can be done to get this pathway working better and then one can utilize the vitamins needed better. Lack of B12 is associated with prenicarious anemia. http://en.wikipedia.org/wiki/Pernicious_anemia Issie Not sure that neuropathy, at least the kind most of us have with POTS, would be associated with B12 - but, could be. I think addressing the autoimmune system and inflammation will address this for most of us. That's just my personal opinion - but, I really believe that. That being said, however, there are times when vitamins can appear to be high in the system and the cells not utilizing and uptaking them properly. If this is happening, you would have symptoms of it being low despite a high serum level. And there are some vitamins, if too high, can actually CAUSE neuropathy and nerve dysfunction ---B6. I used to believe in a lot of supplements, but that was before I started my vegan lifestyle. Now, I feel that food is our medicine and we should try to get what we need from a good diet. However, B12, Vit D, Iodine, Iron are the things I have to supplement with a vegan diet. (However, I'm not supplementing iron - just eating foods high in iron.) Issie Quote Link to comment Share on other sites More sharing options...
davecom Posted August 20, 2013 Report Share Posted August 20, 2013 Yeah high B6 is a cause of neuropathy, and low B12 can be as well. Quote Link to comment Share on other sites More sharing options...
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