Tagged: 

Viewing 12 reply threads
  • Author
    Posts
    • #16861
      Ally
      Keymaster

      Did you know that several studies have shown that B12 deficiencies are common people with Parkinson’s? A researcher on one such study, Dr. Chadwick Christine, says, “Findings demonstrate that low B12 levels are associated with greater walking and balance problems, possibly due to the known effect of B12 deficiency on the central and peripheral nervous systems.” You can read the full article here.

      Has your doctor tested your B12 levels? If they have, did it turn out you were deficient, and if so, was it a significant deficiency? Are you taking a B12 supplement to counteract it? Was testing your B12 levels part of getting your diagnosis?

      • This topic was modified 1 month, 2 weeks ago by Ally.
      • This topic was modified 1 month ago by Marta Ribeiro.
      • This topic was modified 1 month ago by Marta Ribeiro.
    • #16877
      Pamela
      Participant

      The referring neurologist tested my B12 level in August. It was 406. Low but acceptable.  Last week the MDS did another and it had dropped to 266. We agreed I would supplement.

      Perhaps a C/L side effect?

      • #16889
        Ally
        Keymaster

        Thanks for sharing, Pamela. Have you started supplements and if so, have you noticed any changes in your symptoms?

    • #16888
      Jean Mellano
      Participant

      pamela, Dr. Laurie Mischley, a naturopathic doctor notices in her practice most people with PD are deficient in B12, among other nutrients.  whether it is C/L related is unknown.  here isan article i wrote about attending her PD summer school this past august.. https://parkinsonsnewstoday.com/2019/09/03/top-six-parkinsons-summer-school/

    • #16924
      Lou Hevly
      Participant

      Dr Dale Bredesen, in his book “The End of Alzheimer’s, writes:
      «Vitamins B6, B12, and Folate
      Keeping your homocysteine optimally low requires sufficient levels of vitamins B6, B9 (folate), and B12, all in their active forms. Pyridoxal-5-phosphate (P5P) is the active form of vitamin B6, methylcobalamin is an active form of vitamin B12, and methylfolate is an active form of vitamin B9. When you get your blood tested for vitamin B12, you’ll see that the “normal” values are between 200 and 900 picograms per milliliter (pg/ml). This represents one of many examples in which physicians accept as “within normal limits” values that are clearly suboptimal. For vitamin B12, you’ll often see a footnote to the results, explaining that “normal” levels between 200 and 350 may be associated with vitamin B12-deficiency-related disease such as anemia and dementia! You therefore don’t want to walk around with a “normal” B12 level of 300; you want a level over 500.»

      As for the difference between methylcobalamin and cyanocobalamin, see: https://www.justvitamins.co.uk/blog/cyanocobalamin-versus-methylcobalamin/

      Last July my blood test showed B-12 to be at 226. After 4 months of taking a 1000mcg supplement it only went up to 298, so now I’m taking 2000mcg daily.

      • #17046
        Ally
        Keymaster

        This is great info, Lou. Thank you!

    • #16937
      Jean Mellano
      Participant

      thank you lou for your detailed post.  this is good info.. thank you

    • #17033
      Mike P
      Participant

      Last summer I read about the importance of maintaining good B12 levels, especially for Parkinson’s patients. I went back through my history and saw that my B12 levels were 258 back in 2016 (at age 43) when my MDS ordered bloodwork as part of the diagnosis process. While on the low end of normal, I guess it was still considered normal, or at least not the cause of my symptoms. At my most recent quarterly checkup I first met with a PA and she agreed to retest and recommended maintaining levels above 400. My retest was 195 and she referred me to a hematologist who did some more tests (intrinsic factor blocking antibodies) and diagnosed me with pernicious anemia. I now receive monthly B12 shots and my levels are 600. I seem to have a lot more energy. For anyone not seeing increases in B12 levels despite taking  oral supplements you may want to research pernicious anemia and ask your doctor if a blood test may be warranted.

    • #17040
      Jean Mellano
      Participant

      mike, what were your symptoms?  do any remain now that you are at a higher b12 level?

      • #17044
        Mike P
        Participant

        “Mild parkinsonisms” (reduced arm swing, bradykinesia, dystonia, and slight cogwheel rigidity- all limited to one side) first sent me to an MDS neurologist back in 2016 at age 43.

        The initial B12 testing in 2016 was just part of comprehensive Parkinson’s screening to rule out other possible causes or contributing factors (brain MRI, cervical spine MRI, comprehensive metabolic panel, CBC, HIV, Lyme disease, B12, magnesium, phosphorus, copper, RPR, ceruloplasmin, TSH, methylmalonic acid, catecholamines, metanephrines, ANA IFA, and syphilis). Everything else was ruled out leaving PD as the most likely remaining explanation confirmed with a followup positive DaTscan.

        My boosted B12 levels don’t improve my parkinsonisms. I think I have much more energy. I was mainly interested in boosting B12 to support my remaining healthy neurological function and based on some theories that lower B12 levels can contribute to faster PD progression. If I hadn’t reviewed my older low-borderline results and asked for a retest, I am not sure we would have discovered that my slowly declining B12 levels were a result of pernicious anemia where the body is unable to replenish B12 stores from food or oral supplements.

        • #17047
          Ally
          Keymaster

          Thank you for sharing, Mike. I think your experience will be really helpful for a lot of our members.

    • #17045
      Jean Mellano
      Participant

      mike, i checked my last b12 (i take b12 liquid under tongue) and my result was 1288.  i guess i am absorbing my b12 and dont have pernicious anemia.   my energy is super low, i guess it is pd fatigue 🙁

    • #17049
      Robert
      Participant

      Howdy Folks,

      My doctors prescribed a pill called Folbic, which is a B6 and B12 supplement pill.   They did not order any blood tests for this.  They told me that every PD patient will have B vitamin problems so every patient needs this supplement.

      Indidently, I have had very low B and D blood levels for several years prior to my PD diagnosis last year.

      I think they call this Bradybvitaminia!   🙂

      Robert

       

    • #17055
      Jean Mellano
      Participant

      robert, thanks for sharing. those of us with PD are lacking in many vitamins, D also

    • #17058
      Michael R. Scott
      Participant

      My Parkinson’s NP had my B-12 tested and found that my levels were very low. Now I take a Methyl B-12 ( Best price was for the NOW Brand through Amazon) under my tongue each day and that has brought my B-12 levels up into the “Normal levels”. She told me that it is very common for people over 50 to have lower levels and many get improvements to their memory and short term recall when those levels are returned to normal levels, Interestingly, there is a memory test which she gives me every six months and after having been on the B-12 for about six months, I got a higher score than the last test!… 🙂

      Mike

    • #17064
      Rick M
      Participant

      I was diagnosed with PD in 5/2017.  No B12 testing was done.  But later was found to be 207 which is below the low range of 232.

      As part of a normal physical in 7/2018 my blood tests showed low white blood cell count and low neutrophils. ANC 1.05, WBC 2.5.  Went to a hematologist who did a B12 test and B12 was very low: 207.

      Over the following year I have been diagnosed with Asymptotic Neutropenia and am on weekly B12 shots.  My B12 is now regularly >800 but my low ANC continues to swing between 400 (danger zone) and 1.7 (almost in acceptable range?

      All my doctors — hematologist, Parkinson’s doctor, and primary care physician —  have told me this has nothing to do with the Parkinson’s but have no other clinical causes to attribute it to.  Interesting that there is indications that it is correlated to my PD.

    • #17070
      Jean Mellano
      Participant

      Mike, you are not getting older, you are getting wiser 🙂

      Rick, that is interesting… i blame everything on PD, it is a good scapegoat.  there is so much unknown about this disease, nothing surprises me anymore

Viewing 12 reply threads
  • You must be logged in to reply to this topic.
Copyright © 2017-2020 All rights reserved.

©2020 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending
or

Log in with your credentials

or    

Forgot your details?

or

Create Account