1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Brain Cells Making us Sick? The microglia connection in ME/CFS & Fibromyalgia
Simon McGrath looks at theories that microglia, the brain's immune cells, could trigger and perpetuate the symptoms of ME/CFS and fibromyalgia.
Discuss the article on the Forums.

High b12 levels and my story - Not sure where to post this, sorry!

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Cazzzzzy, Aug 8, 2012.

  1. Cazzzzzy

    Cazzzzzy

    Messages:
    21
    Likes:
    1
    Thanks Tania!
    I will ask for all copies soon but right now I don't even have the strength to go to docs.... I used to have the odd better day but now I don't but when I can go again I'll get copies...
    Tbh I'm not sure if an endo can even help with me, the doctor said if the endo cant find the cause then a neuro is the next step but I just don't even know if I'll even make it that long......... I know that sounds drastic :/ ...... but this has been going on for 3 years and it has reached its peak now I feel.... I went to the docs back and forward over this time with the same concerns (no stamina, legs cant get far because they are so heavy and weak and slow).... and only now they are starting to listen but now I can hardly walk and have to hold on to something all the time!....

    And yes even though I cant afford it I'm going to order the cortisol saliva test as from research it seems to be the best bet for cortisol tests!

    Thank you xxxxx
  2. Cazzzzzy

    Cazzzzzy

    Messages:
    21
    Likes:
    1
    Spoke to my good doctor today and she was very helpful..... She sounded shocked that the hospital hadn't sent a sooner appt as she did write to them again after the 30 week wait response, and she told me to get to the surgery on Monday after the weekend.
    I am very worried but I guess I'll find out one way or the other soon.....
  3. Cazzzzzy

    Cazzzzzy

    Messages:
    21
    Likes:
    1
    I just came across this post again when googling... I have had a diagnosis now & yes as I thought I have MS ... Primary progressive...

    Anyway just thought I'd update for anyone reading & never stop fighting! ... Now I walk with a stick, need a wheelchair for distance and there is extensive damage in my brain and spine that was ignored for many years... I wish I had been listened to!

    Peace Love & Light xxx
  4. Valentijn

    Valentijn Activity Level: 3

    Messages:
    5,645
    Likes:
    7,260
    Amersfoort, Netherlands
    That's an unfortunate diagnosis to get - but better to know than to not know, and hopefully you're having less problems with doctors now :p

    Best of luck.
  5. rlc

    rlc Senior Member

    Messages:
    822
    Likes:
    243
    Hi cazzzy, very sorry to hear you have MS. It is such a tragedy that so many people have to wait so long for a diagnosis, good for you for keeping on fighting to get the right diagnosis.

    My best wishes for the future!!!!!!!!!!!!!!!!!!!!
  6. Creekee

    Creekee Senior Member

    Messages:
    143
    Likes:
    111
    Arizona
    Cazzzzzy,

    So sorry to hear this news. But kudos to you for staying with the fight and getting your diagnosis nailed down. You are an inspiration to the rest of us, who continue this challenging, and mostly unaided, search.

    Sending you lots of good wishes for effective treatment and improved health!
  7. Bluebell

    Bluebell More % Neanderthal than Adreno but less hairy :-D

    Messages:
    392
    Likes:
    208
    @Cazzzzzy
    Dear Cazzzzzy,
    I'm relatively new here, so I have only just come across your thread tonight.
    I am so sorry to hear that you have MS.
    It's terrible that you were not taken seriously by the doctors in prior years.
    I wish for you -- strength, courage, healing.
  8. roxie60

    roxie60 Senior Member

    Messages:
    1,580
    Likes:
    443
    Central Illinois, USA
    Cazzzzzy I was just wondering how you are doing, did you get help from Endo? We have similar experiences and I am desperate to find answers to this severe lack of energy. Some of my other symps have improved, less pain (I think changing diet helped once found eggs, dairy and gluten sensitivities), I'm still sore all over and have occasional sharp pains, sleep distrubed, allergies. I have been wondering about hypothyroid but my numbers are even lower than yours but I fel just awful, it hurts to sit an type Im so fatigued. Just curious how you are progressing and what you ahve found out.

    UPDATE: Sorry Caz I had not finished the entire thread, sorry to hear about the MS dx. I have white spots on my brain but neuro says its due to my occasional migraines and not MS (I wonder how they make that distinction). I have been fighting to get answers for years. Still looking for answers.
  9. AlexM100

    AlexM100

    Messages:
    2
    Likes:
    0
    Hi - not sure if any one checks this recently but I am experiencing similar symptoms and doctors don't know what it is. They include constant muscle twitching in legs for last 3 months, over 2000 B12 level (high), sweating on legs at night and extreme fatigue. When I am lying down flat more than 2 hours, besides the sweating, the veins in my leg buldge out (they aren't visible normally). When I've tried to exercise a little, like a moderate jog on treadmill, the twitching gets really bad after. I've had EMG and MRI scans (but not of brain, only of spine). Are these similar to what you were experiencing @Cazzzzzy ? There is no diagnosis yet. I don't know what other doctor or test to ask for since I've been to neurologist and primary doctor. Any help or advice you can give would be really appreciated. I'm at a loss and grow more tired by the day.
  10. PennyIA

    PennyIA Senior Member

    Messages:
    211
    Likes:
    235
    Iowa
    I haven't read the whole thread... but I had quite similar symptoms as well... AND the excessive B12 levels.... doctor informed me that my B12 levels were fine even though I had many symptoms of B12 deficiency which must mean I need psychiatric assistance. gee thanks

    I'm not cured by any means... but after many years of research the hard way I stumbled on one piece of the puzzle at a time.

    1. If you have methylation issues you are more prone to high homocysteine levels (I had those)
    2. If you have methylation issues you can become toxic on b6 at levels that NO ONE else can get toxic on (I did)
    3. Doctors treat high homocysteine levels by recommending folic acid, b12, and b6 without any knowledge about whether or not those are the forms of the vitamins that your body can process (and if you have methylation issues IT MATTERS A LOT)
    4. After months on those supplements (and in a form that doesn't work for me) I got SEVERELY ill
    5. Taking folic acid actually WORSENS the condition when you have methylation issues. (I did)
    6. Stop taking folic acid and you REALLY SLOWLY start to feel better (I did)
    7. If you have methylation issues you can have EXTREMELY high levels of b12 in your system - but it's not in a form that your body can process
    8. If you have methylation issues you can have high levels of UNUSABLE b12 in your system AND have symptoms matching B12 deficiency because your body doesn't have access to the form of the vitamin you need to survive
    7. But it's a WHOLE LOT more complicated than that.

    But, that said, I'm progressively getting much better now that I'm treating my methylation issues.

    Sadly, when I went back to my primary care physician with evidence as to how methylation issues all tie into a lot of the funky things that we kept finding but that they couldn't explain... and all excited to give him the lab work that shows my list of genes that have defects that all contribute to an issue in the methylation cycle.

    His recommendation? Ummm.. take some folic acid and you'll be fine... grrrr.

    I'm seeing someone else now who is helping me .... I'm not cured. But I'm working full time and I no longer feel as much like the walking dead as I used to. Even got my apartment semi-cleaned - and that's saying something.
  11. Mary

    Mary Senior Member

    Messages:
    149
    Likes:
    81
    Alex - have they checked your potassium levels? This is so basic one assumes they have, but you can't assume anything with doctors. Low potassium can cause muscle twitching as well as severe fatigue. I wouldn't worry about your high B12 levels. Obviously your body is probably not using B12 properly. You may need folate (not folic acid! which is synthetic and can cause a folate deficiency) - read Freddd's posts about his B12 protocol and folate and potassium - he has several on this board, do a search. And the potassium is crucial - I could not have continued with the B12/folate protocol if I did not add in potassium.

    Mary
  12. Mary

    Mary Senior Member

    Messages:
    149
    Likes:
    81
    Penny - it sounds like you came across methylfolate, in the place of folic acid. I'm sure you know Freddd has written a lot about this, his posts helped me so much once I started taking methylfolate (Solgar brand) in addition to methylcobalamin. I also found that the extra potassium was essential. I first felt better for a couple of days after starting the methylfolate, and then hit a wall with extreme fatigue and thanks to Freddd's posts realized my potassium was tanking. It was a lifesaver, taking extra potassium and it enabled me to continue taking the folate, which boosted my energy.

    Mary
  13. AlexM100

    AlexM100

    Messages:
    2
    Likes:
    0
    Hi Mary - Thanks for the reply. Yes, the potassium is normal. I have the blood work and they did a full blood profile. It's fine within the normal range. I haven't heard about folate. I will look into that now.
  14. Bieni

    Bieni

    Messages:
    3
    Likes:
    0
    Good morning, I just found this forum by researching "high Vitamin B12 serum levels." This was the result of the blood test for my yearly physical, and the serum level was 1043 pg/mL with a range of 211-946. Last year this number was 513. The doc ordered a check for Vitamin B12 as I was complaining about constant fatigue that could not be remedied by sleeping more, eating more healthily etc.

    In addition to the elevated B12 level, I also showed an elevated alt level, up from 16 U/L last year to now 47. This concerned the doc, and he ordered to lay off alcohol (I only drink occasionally) and stop all supplements. Then I need a retest next month. He never even mentioned the elevated B12 level.

    Have any of you heard about the Arendt/Nox study (I think 2012) where the results suggest that elevated B12 levels should be taken seriously as a potential tumor marker since supplementation usually does not raise B12 levels significantly? I am very scared and get absolutely nowhere with the physician who, I feel, thinks I am hysterical.

    Bieni

See more popular forum discussions.

Share This Page