New here and looking for advice - do I have a problem?

Hi all

I'm new to this board. I have hypothyroidism and have been suffering from peripheral neuropathy for a couple of years. My B12 was checked a while ago and was 587 (197-866) and my folate was 20 (4.6-18.7). At the time I assumed all was fine, but now I'm not so sure. I've been taking high dose vitamins (including B12, but cyanocolabamin and probably not enough to treat a deficiency) for many months now. Initially, following a thyroxine increase too, my neuropathies improved and I stopped dropping things and was able to move properly, but recently have been getting worse again (but not as bad as before). I also know my T3 levels are low and that I'm not converting T4 to T3 well.

I recently started wondering if my folate levels being high would have given an abnormally high B12 reading - is that how it works? Could anyone give me any advice? I just don't know whether I have a B12 problem or whether its just all due to my thyroid.

Thanks for taking the time to read this.

Emma

3 Replies

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  • First you are taking absolutely the wrong kind of B12,cyanobalamin will not do much for peripheral neuropathy. Please take no more, for it can adversely affect some people as it has cyanide molecules (CYANOcobalamin). Change to either Swansons or Jarrows sublingual methylcobalamin available from Amazon, 5000mg (5mg), they also have methylcobalamin in spray form. Methylcobalamin is directly usable by the body as does not have to be methylated, it already is. Cyanocobalamin has to be methylated before it can be used, and is anyway the least efficient form of B12 and as noted does little for neuropathy. Your folate levels being high have nothing to do any abnormally high B12 reading, and I can assure you that a reading of 587 is not a high one. B12 is non-toxic. The NHS has very low ranges and does not recognise that neuropsychiatric symptoms can occur at levels of 300. It is very good you are supplementing, just change to the more effective and safe methylcobalamin, a 5mg tablet per day sublingually is the minimum I would take as a very small percentage is absorbed.

    If you really want to raise the B12 fast then 5 x 5mg tablets sublingually should suffice. You can read how I raised my own B12 from 167 (180-800) by typing: Active B12 Test without referral in the search box upper right. I have several posts giving rationale and references you might find useful.

    It is not possible to assess whether you are undermedicated as to thyroid, which could be responsible for neuropathies, as you omit any thyroid information, so please post your complete results plus reference ranges which vary from lab to lab, plus whatever your meds are and how much taken. Please be aware that you are entitled to copies of blood test, just ask.

  • Here is the link, save using the search facility:

    pasoc.healthunlocked.com/bl...

  • Thankyou for taking the time to reply. I know that methylcolabamin is the one to use, I just take a multivitamin at present so wondered if this would have affected my last B12 blood result, giving a false high reading. Also, you say 587 is not high, but is it ok for someone without a deficiency? I also read that the test is flawed, so does it mean anything anyway?! I'm just about to have another thyroid test, but I know I have a conversion issue and this is just to confirm it prior to starting T3 (TSH suppressed, T4 top of range, T3 low end of range).

    Basically, I'm trying to work out my best next steps. I don't know whether my neuropathies are B12 or thyroid related. I always assumed thyroid, but then we hypos are susceptible to B12 deficiency too, so is the thyroid link to neuropathy actually a B12 issue in most people?

    Anyway, from what I've read, it seems that no harm will be done by taking some serious B12 supplements, so I may as well give it a try.

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