Vitamin B12 replete


I just thought I'd share my result as I have promised a few of you to update.

I recently took the St Thomas's (as per thyroid UK) Vitamin B12 test hoping that it being low might be another missing piece in helping my recovery from anxiety and depression. The range was 25-108 and mine was 120, so outside the reference range but high. So I have to say B12 is optimal. My Methylmalonic Acid was in range to at 110 (0-280).

I had been feeling a little better on my 30mg mirtazapine (anti-dep) and 25mcg thyroxine, probably the last 2-3 weeks but in the last days I have woken feeling low and anxious with my confidence wiped out. There is no rhyme or reason to it. There was a sun shining in my heart one day. And the next it was replaced with a black cloud.

At the end of the month, I am going to up my thyroxine to 50mcg, several of you on here think it's too low (I have raised antibodies but nothing else and family history of hash's). The endo was happy for me to do this and I know I have a blood test planned for the end of the month prior to seeing him in October. Can't think what else to do...


26 Replies

  • Glad you are replete :-) So back to the drawing board. How is your FT3 ?

  • Thanks Marz. Not feeling so good about it actually. As it is with having to be in charge of your own health, I had a look at high Vitamin B12 levels and what they indicate. I'm a little upset about the answers. Apparently high levels of Vitamin B12 in the blood can be a sign of serious disease, including a kind of blood cancer called a myeloplofierative neoplasm. This is quite significant because my grandmother had it, and so does my mum. In other words it runs in my family. What I am actually finding stressful is that my GP did not think that the high B12 was an issue and that basically there is no NHS procedure for what you do when someone has it. I dread going back to my GP because I think she just thinks I'm a hypochondriac. I already had to beg for a referral cos I thought I had Hashimotos. Then beg for a referral for the blood test. And all of this to try and get to the bottom of my depression. Now it's gonna be like I'm going back with something else again. :-(

  • What I meant is that there is no NHS procedure which says 'High Vit B12 could be a sign of something..., next steps, test for x, y and z'

  • Halinka, Supplementing B12 means B12 will be high and isn't a problem. If you haven't been supplementing B12 ask for advice on the PA Society forum on HU.

  • I was taking the a vitamin B complex but stopped two weeks before testing and recall that the amount of B12 was very small and not the methylated version so I doubt that it could be this.

  • So sorry you are so worried - which of course is understandable. I don't think you have been supplementing B12. Maybe check out with the people of the PAS forum. Ask if the gene preventing methylation of Folic Acid can also apply to B12 - there could be a connection. The MTFHR I think it is called. There is a website for this particular condition.....

    Do hope everything works out OK - keep posting - and of course asking questions. I think you have enough information to support your concerns when you see your Doc....

  • Marz, for some bizarre reason I think I was tested for MTFHR during IVF and didn't have it. But I need to double check that.

  • This article may be of interest :

    Just a personal anecdote :

    I had over the range serum B12 and also high active B12, but then my B12 was always high whether I was supplementing or not - it never seemed to drop much. I was worried about the implications of having high B12 levels as a result of reading papers like the one I just linked. At this point I had only ever supplemented with cyanocobalamin.

    But I had so many symptoms which suggested that I was B12 deficient despite the blood tests that I threw caution to the winds and started supplementing with high dose methylcobalamin. In my case it was an amazing success and I feel a huge amount better. I still feel there is improvement to be made, but it may be too late for full recovery, however some improvement is better than none. I won't buy any supplement containing cyanocobalamin again, that's for sure.

    Oh, and another thing. I intend to try supplementing with dibencozide (adenosylcobalamin) in the near future, just to see if that helps. I believe caution is needed with this though, so I'll be starting with a tiny dose.

  • Yes, that is the article that I read that made me really scared and because of the fact that blood cancer is a hereditary condition in my family (mum, nan, uncles and cousins all have it), I am particularly nervous and reluctant to try the methyl. I had been taking an average Vitamin B Complex with the cyan version of B12 but it was a tiny dose and I stopped it two weeks before testing. I don't think the result reflects supplementation. I also don't feel I have that many Vitamin B12 deficient symptoms. The big ones for me are anxiety and depression. Thanks for your thoughts.

  • Good luck. :)

  • Do you recall what your active B12 was? Are you in the UK? Did you GP look into it further?

  • It was recorded as >128 but for some reason I haven't recorded the units in my spreadsheets.

    I am in the UK and the active B12 test I did was done privately via Blue Horizon. At the same time my serum B12 was tested and the result was :

    788 ng/L Ref range (191 - 663)

    I've had my serum B12 measured 6 times in total since July 2012, either privately or by the NHS and its only been in range once.

    I only consult my GP if it can't be avoided, so she is completely unaware that it was done. At the time I did the test I hadn't seen that link I gave above, and I wasn't aware that high B12 could be an issue. I've taken a personal decision (for better or for worse) that I won't worry about it.

  • Yes, I am starting to feel the same way. in my case, it may be that the raised B12 reflects a predisposition to the condition my mum and nan has.

  • Plus, that dreaded article is the only thing I have found really. There's not much more on it.

  • I'm assuming that eventually, if the high B12 is a problem, that some other blood results will indicate it. I pay to have extensive blood tests a couple of times a year, so I hope I will spot changes and trends in my results.

    Unfortunately the blood tests I get (which are standard ones that a doctor would be familiar with) cost as much as I can afford. I would love to get other things done e.g. homocysteine, but I'm also paying for my own T3 and lots of supplements. I just wish money was elastic and could be stretched six ways at once.

  • Hey Humanbean, I know what you mean about prices. I know this might sound odd, but worth considering... I am half polish and when in Poland have stacks of things tested because out there a. you choose what to test and need no referral and b. its really really cheap. if you book in advance via ryanair or wizzair you can get to Poland for less than £20, be tested all in one day and be on a flight out that evening. They also turn tests around really quickly. Halinka

  • Wow! That is really thinking outside the box! I'll have to think long and hard about that idea. :)

  • Have you thought of contacting Martyn Hooper - the Chairman of the PAS. There is a phone number on their website and an e-mail address. I recently e-mailed and gave my number here in Crete and he phoned me - SOOOOOOOOO helpful :-) He has so much experience....

  • Thanks Marz


    Hope this link is helpful :-) x

  • Thanks Marz. Just thought I should add that homecystine was normal

  • ...yeah but it does mention raised B12... What number was your Homocysteine ?

  • Yes it does. My homecysteine was 110. The range is 0-280.

  • Gosh I have only seen Homocysteine with a level of 15 at the top. They say single figures is just about OK - 5 is very good ....

  • Marz, I made a mistake. The test was for Mathylmalonic Acid. Pardon me.

  • No worries :-)

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