Finally getting b12 injections!

[Ashley8]

Hi everyone!

Yesterday I was finally able to convince my hematologist to start giving me b12 injections. He prescribed 1 injection per month 1000 mcg cyanocobalamin. He was still insisting before that that I didn't need it because my hemoglobin was normal. I told him I wanted the injections because I still have neurological symptoms (burning tingling in legs and sometimes areas of my hands and face, balance issues, horrible memory and concentration issues) and didn't feel well. He didn't offer loading injections but wondering if in my case with such extreme neurological issues if they should be loading injections? If so how often? I live in America and trying to get injections in the first place has been like pulling teeth. Is 1000mcg per injection a month the usual? Would love to hear your thoughts.

Thanks!

[Galixie]

1000mcg a month of cyano is pretty typical in the US. I wasn't given loading doses either. I do feel like I would have benefited from loading doses, and I did eventually get them after switching to a naturopath.

If you can afford it, you may be able to find injections available at alternative medical practices. You might be able to get your loading doses that way.

As for frequency of loading doses, I am not an expert. I think mine were once a week for four weeks, but I believe every other day for two weeks is recommended.

[Ashley8 in reply to Galixie]

Hi galixie,

Thank you for your response. I have also thought about going to a naturopath. Unfortunately there isn't one close by so I would have to travel but it may be well worth it. I don't know why the United States doesn't seem to recognize the needs for pernicious anemia patients as I went almost 2 years after my diagnosis with no injections.

[clivealive Forum Support]

Hi Ashley8 going back more than 45 years to 1972 when I was diagnosed with P.A I was given ten loading doses of cyanocobamalin 1000mcg over two weeks and then one every four weeks (supposedly) for the rest of my life.

I'm still on the cyano (despite being in the U.K. where hyroxo is favoured) but have managed to "negotiate" the frequency down to every three weeks due to a return of neurological symptoms in the run up to my next injection.

I hope you get your "one a month" injection and wish you well.

[Ashley8 in reply to clivealive]

Hi Clivealive!

Thank you for your response. I assumed that frequency of injections was based off when b12 deficiency symptoms returned. I'm glad you were able to get yours changed to every 3 weeks based off your symptoms. I will be getting 1 injection every four weeks and hoping this will be enough to start feeling better. I'm not sure why my doctor didn't offer loading doses or acted like giving me injections in the first place was such a big deal since he was the one who diagnosed me with pernicious anemia. So weird!

[clivealive Forum Support]

Sadly many doctors have a "one size fits all" mentality when it comes to prescribing B12. "It says in the book every four weeks" so every four weeks it must be as far as they are concerned.

Keep up the good fight - if you win you've helped the next patient along with the same problem.

I wish you well.