Low B12 and VitminD

Discussion in 'Fibromyalgia Main Forum' started by carolannwestern, Aug 8, 2008.

  1. carolannwestern

    carolannwestern New Member

    I have FM and it is really bad. I have a lot of bad days. I am vey lucky to have two doctors that are very well educated in FM. One is my regular doctor and the other is a Nurologist. I am on Effixor and elivil. I get shots from my family doctor when it is really bad. My B-12 is so low that is off the scale and the Vit. D is the same. Does anyone else have this problem? I am new to this site. I have learned a lot from it. I also have restless leg syndrome. I don't sleep very much. Thanks for everything.
  2. deliarose

    deliarose New Member

    Long-term deficiency of B12 can cause irreversible neurological damage from what I read.
    I would get yourself on shots of B12 asap.
    If your doc won't oblige, find one that will Rx them.

    Read up on it first though.

    Some people think that hydroxocobalamin is the safest form of B12 for people wiht our conditions, cos methyl B12 can move mercury into the brain.

    I would read everything you can on B12 in the library here & also all Rich Van K's posts.
  3. sunflowerxo

    sunflowerxo New Member

    Hi I was just tested for my vitamin D by naturopath and yes it was low and she now has me on D3 drops only for 2 months. Definately pain everywhere everyday but varies. She had just had me take the home adrenal saliva cortisol test also so I am waiting for results as I'm extremely exhausted everyday even while resting..... Fortunately, my B's were fine....and sleep is terrible and nonrefreshing!
  4. carolannwestern

    carolannwestern New Member

    Thanks for you responses. I forgot to mention that I take a vitamin d pill and also I get a shot of B-12 every other week. It has been low for almost a year. Thanks again.
  5. munch1958

    munch1958 Member

    My numbers for Vitamin D were measured at 31 and 32 just over two years ago. With supplementation, I've gotten them up to just under 60. They probably need to be rechecked again.

    I'm still struggling with 5 osteoporosis related compression fractures at L1 - L5. I may opt for kyphoplasty and getting them filled in with bone cement. Just don't know what that would do to MCS issues so I haven't reached a final decision yet???

    My B12 was very low. I started doing Rich's methylation protocol about 2 years ago. There were a few items I wasn't able to use or didn't need as they were redundant.

    I've been nebulzing glutathione for almost 2 years with good results and didn't want to change that to another form. My insurance pays the $25 copay for one months supply so I didn't want to go to supplements and pay out of pocket.

    I've gotten help from:

    Methylcobalamine 25 mg/ml One ml per day injected IM -- sounds creepy at first but it's super simple to do. The B12 shots have gotten rid of my long standing constipation issues.

    Intrinsi Factor

    SAM-e (didn't seem to help much so I dropped it with no ill effects.) I was nebulizing glutathione for MCS so possibly I didn't need the SAM-e too.

    I no longer have MCS issues so that part is exciting. I'm not ready to dose myself in perfume but I can be around it without feeling sick. That's progress!

    I'm also on HGH after flunking a stim test for it's relase. That has been one of the most critical meds for me.

    I am sleeping better than I have in my entire life so some of the pieces are faling into place for me.

    This is a maddeningly slow illness to treat. Sometimes it takes 4 full months to see a change. I'd like more instant gratification!!!
  6. jinlee

    jinlee Member

    I don't know if the low B12 levels are from the FM or family history (father, brother, uncle) of pernicious anemia. Anyway I get a B12 shot every two weeks.

    Vitamin D I take supplements for.

    My HGH is very low and doc may do something for that, will find out in two weeks.

    Thyroid also low.

    I think the FM just does a number on all body systems, be it from a virus or whatever causes FM in the first place.

    It is good if you can find a doc who understands the need to replace what your body is lacking, understands supplements, etc.

    I hope things get better for you.

  7. interesting how many get b12 inj. twice a month. I get them once a mo and they don't help give me any more energy. Do they give u energy?
  8. carolannwestern

    carolannwestern New Member

    /I am taking b 12 shots and the liquid every day. I am on a run of 6 days with no releif. I have been having panic attacks daily. I will be seeing a theripist to help deal with the pain. And to get a handle on things. I have a wonderfull husband.
  9. ladybugmandy

    ladybugmandy Member

    i think hydroxycobalamine or adenosylcobalamine are good for people with FM and CFS.

    you are lucky to have found a NEURO who takes us seriously. i have not been able to do so!

    luckily, i do have a great doctor though.