Here we go again.. down the rabbit hole

[thegiantess]

So, I don't want to repost a long list of history... I posted frequently here in the early part of the year when I was trying to figure some things out. Briefly, Last year around Oct I had numbness and tingling, had B12 tested and it was about 200 points high. My doctor of course told me to stop supps even though I was not taking supps at the time. So, ffwd to January I started seeing a naturopath who thought I had a functional deficiency of B12, that I had B12 stored, but couldn't use it. So, he had me on high doses of b12 and folate and within 2 weeks symptoms went away. So.. I kept up with that for many months, went through periods of stop and start and had start-up symptoms every time. A few weeks ago I decided I wanted to test b12 and folate again to see if anything had changed, so I stopped supplementing during that time. Folate was 15, range 0-17, so I think that's pretty solid. But B12 was almost exactly the same as it was the first time around... about 200 points above range. I think the upper limit at this lab was 999 and I was like 1250 or something.

I think the thing that frustrates me is that when I have not been taking the supplements I have not had any symptoms. You would think that with not taking them for like 3 weeks that something would start back in... I have had my doubts that I had a deficiency... bc there is so much confusion around the topic and bc regular doctors just sort of blow it off. So.. as much as it sounds strange, some symptoms would be nice! If it was not b12 deficiency that was causing the numbness and tingling last year, my theory is that it was stress.. I was going through a stressful time in life. Maybe that could have explained it?

Anyway, in the spirit of digging deeper I have ordered a MMA serum test. But my suspicion is that it will test in normal range and then I will really be up a creek. So.. my question is, what then? What if MMA comes back normal and b12 tests slightly high and you are generally symptomless? The only information that can be found on the interwebs is that elevated b12 is a sign of leukemia or liver damage. I imagine that in order for high b12 to be a sign of leukemia, it would have to be really high... but still, the interwebs is so good for stressing me out. As far as liver disease, I find that highly unlikely. I had CRP test done and it was under 1, my liver enzymes are always very low range. Also, my iron is in good range (high often indicates inflammation) and my ferritin is like 50.. not perfect, but not bad.

Anyone had experience with slightly high b12 and normal MMA? Any thoughts from you smart people?

 

[helen1]

Well, I don't know about 'you smart people' but my experience might help you. When I started supplementing with B12 and methylfolate, I got tingling in my hands and forearms and a bit of numbness. Like you, when I stopped the supps, those symptoms would go away.

It wasn't until I read freddd's tests of different brands of B12 and started taking the one that tested most absorbable (Enzymatic Therapy) that those symptoms stopped. I also read that if you are absorbing more folate than B12, you run the risk of nerve damage from the folate. In retrospect, I think that's what was causing the tingling and numbness.

As far as serum B12 levels, mine have always been mid-range or high, yet my MMA and MCV were high, indicating B12 (and maybe folate) deficiency. Later testing showed folate levels were low. You might well have high MMA too. How is your MCV?

You might want to make sure you are taking a more absorbable brand of B12 (B12 being notorious for being absorbed in minuscule amounts, thus the use of injections) to protect your neurons from folate supplementation.

 

[thegiantess]

Yah, I experimented with some different brands and they absorb just fine as far as I can tell. That's the whole issue though.. aside from that 3 month episode last year that started in October, I have been symptom free whether or not I religiously take the supplements or not. So, it causes me to question the whole thing. It would be so much easier if the serum b12 readings were better understood.. but, alas. I will report back once I get my MMA results. Let's just hope they show a deficiency so I don't have to travel further down this hole.

Thanks for your thoughts.

 

[thegiantess]

Oh, and my MCV is always in normal range. It is my MPV (platelet volume) that is often high, indicating that for some reason I am often making new platelets. Who knows.