Neuropathy & Vitamin B12/complex help

[hakimzadeh]

Hi to All from NYC, I am 56 and in good physical shape I was diagnosed with (idiopathic) peripheral neuropathy 2.5 years ago; I have learnt that doctors (GP's, Neuros, et all) can only diagnose but not help with cure! My B12 was in 500's in 2012/2013/2014 and dropped to 210 in 2015 when my symptoms began ... so there is a chance that my problem is associated with lack of B12 and/or other B's. I am pretty sure I have malabsorption issues but so confused with: Cyanaco vs Methyl, what foods & juices get or don't get absorbed & in what form or shape, masking problems, B12 serum results vs true cell counts, injections (with Amino acids) etc etc etc ... I want to bypass everything and start B12 and/or B-complex injections as this seems to be the most effective way. I AM SEEKING YOUR ADVICE AS TO WHAT IS THE BEST AVAILABLE INJECTION AND HOW DO I GET IT? My most recent test results are: B12 at 598; Ferritin at 136; folate at 11.9. Thank you all in advance, Cyrus.

[hakimzadeh]

Thanks Eaoz. You dont think the drop from 550 to 200 can be the cause? My serum level is not low today because I am taking lots of B vitamins and nutrient foods the last 2 years. Do you know anything about the B-complex injections and where to buy them? Thx again

[Foggyme Administrator]

Hi Hakimzadha.

Sorry, can't advise about B12 complex injections...here in the U.K. prescription cobalamin is hydroxocobalamin, whilst some use methylcobalamin.

Other forum members may use it and be able to advise.

If you do intend to use B complex injections, check if it contains vitamin B6 (and how much): over supplementation with vitamin B6 (pyridoxine) can cause potentially irreversible peripheral neuropathy - and if your levels of B6 are normal, then you don't need to take any at all. And likewise, check the other B vitamins too.

Note: if you have been supplementing with B6 (you say you have been taking lots of B vitamins), your unexplained peripheral neuropathy might be due to over supplementation with vitamin B6, rather than B12 deficiency. Especially if the peripheral neuropathy is your only symptom. Good idea to stop anything taking anything containing B6 - and get your B6 levels tested.

An MMA blood test may clarify whether you have B12 deficiency or not. The result will be raised if B12 is not being processed properly at a cell level. However, if you have been taking large doses of oral B12 supplements then the test may skewed.

Note: If your body has been absorbing oral B12 (which it sounds like it has) then its unlikely that you have absorption problems.

Also worth checking your folate levels - B12 and folate work together so if folate is deficient or low, the body cannot process and use B12 properly. (Best not to take folic acid on a just in case basis - over supplementation can cause side effects - better to get blood test first).

Sorry there aren't any easy answers...I'd look at potential over-supplement with B6 first, especially if you don't have any other symptoms (which would be more than likely if you had B12 deficiency - but perhaps you do but haven't mentioned it 😖).

Hope you manage to find some answers.

Good luck 👍

[hakimzadeh in reply to Foggyme]

Thanks much foggyme. My MMA value was <0.10 umol/L so I guess am not B12 deficient! My B6 level in 2014 was 29.9 (range 5-46) and I took PoDiaPN supplements for 1 year containing 35mg of B6 as pyridoxin + B12 methyl + Quatrefolic 5mg. Is that too much B6? You are all so much more helpful that both my GP and so called neurologist. God bless

[Foggyme Administrator in reply to hakimzadeh]

Hi hakimzadeh.

Quatrefolic 5mg (which I assume is some sort of folic acid - sorry, no time to look it up) is far to high a dose of folic acid, for far too long - especially if you did not have a folate deficiency. Over-supplementation with folic acid can cause some quite unpleasant side-effects, including peripheral neuropathy. Here's some more information:

mayoclinic.org/folatesafety

The B6 - just wondering why you were taking this - your B6 levels are fine and you have no B6 deficency. So yes, it is too much - because you don't need it. Another potential cause of peripheral neuropathy.

So, I'm just wondering...it might be the case that it's the supplements that are causing you problems: your blood test results show that you really don't need the things you have been taking.

As your peripheral neuropathy has been investigated and found to be idiopathic (no know cause), then I think you should consider whether you might have the neuropathy due to over-supplementation with B6 and folic acid, both known to cause peripheral neuropathy.

Think if you're going to continue with the B12, then it might be a good idea to just take the B12...but are you sure you really need that?

Have you thought about stopping all supplements (certainly the B6 and anything that contains floic acid) and then seeing how things go? Certainly worth a thought.

And I'm just wondering...a final thought...were these prescribed by a doctor?

Good luck with whatever you decide to do 👍

[hakimzadeh in reply to Foggyme]

An integrated med MD did. FYI, I only took 120 capsules of the PoDiaPn over 1 year period (1 every 3 days). I will not take anymore B6 and folic acid supplements. The same MD says that my B12 must be as high as possible in case my neuropathy is due to B12 deficiency. I do not believe it is harmful to over supplement B12 as the excess gets discharged!!?? Don't you think folate at 11 and ferritin at 136 are too low??

Thank you so much for helping.

[Foggyme Administrator in reply to hakimzadeh]

Difficult to say about the ferritin and folate without the reference ranges. Do you have them?

And date when the tests were done?

(More on the B12 next reply 😀)

[BethattheBeach]

I thought it pertinent to mention a warning about acquiring B12 injections without medical supervision. At least have the first one with Dr's supervision. There are rare but serious side effects for an adverse reaction. Have you thought about seeing a Functional GP. At least, that's what they are called in Australia. A qualified doctor who is also a qualified naturopath, dealing in vitamin therapy. Mine is a genius! He has adjusted various minerals and vitamins to improve my health. I'm certainly not 'cured' but I feel a whole lot better than before.

Keep looking for the answer! Good luck.

[hakimzadeh]

Thanks much Eaoz. I read that B-12 serum level can be misleading and often not an indicator of true cell level which is the main reason I m considering injections.

[hakimzadeh]

Thank you Beth. I had a few cyanacocobalamin injections over a year ago with no side effects other than intensifying the pins & needle pain in my feet!! I agree perhaps I need a good nutritionist more than a GP.

[hakimzadeh]

My MMA value was <0.10 umol/L .... so I guess that means I am not B12 deficient at cell level. Thank you very much for your help.

[maiken]

Maybe you can find people here who experienced something that sounds familiar to what you're going through

medhelp.org/posts/Nutrition...