New here, B12 test results confusing. Not absorbing?

[Stacy2012]

Crux thank you so much for telling me that!!! You are the first person to tell me or that I have read anywhere that has a serum above 3000!!!!!! That number was scaring me since nobody else seemed to have one that high. I even read somewhere else that some of the tests dont go above 2000!

Crux would you share your story with me???

You say you have a numb spot on your heel...did it hurt when you stretched the skin, either by standing up to walk or rotating your foot????? Did you get feeling back????

Since your story seems similar to mine Im curious.

thank you for sharing!

 

[Stacy2012]

sorry, but Crux you said your heel/neuropothy is getting better....can you tell me how long it took? What you did??? Im sorry to be so nosey, but I would love to hear your whole story.

 

[Crux]

Hi Stacy;

Some labs only include ranges up to 1200. I've only been to 2 labs. The first one showed that I was above 1200. The second one showed that I was above 3000. Some labs will measure even higher. The highest number that I've read about was in the 800,000 range.

It probably means that we have some sort of a transport problem. I'm not sure how to repair this.

Neuropathy is strange because it comes and goes, and the sensations vary. There can be tingles and shocks along with vibrations and numbness. At one time, 5 yrs. ago, I had a large numb patch on my right side just below the liver. It felt like a piece of leather was glued on. My skin there seemed foreign. I had shocks and vibrations that traveled down my right hip to my foot. There were weird sensations all over my body. I had trouble controlling my hands and feet. I was falling regularly.

I tested negative for Pernicious Anemia. I didn't have the anemia part, but I had enlarged red blood cells.

These past five years have been challenging because neither myself nor the Docs I've seen knew how to treat this. So I've been bumbling with taking B12 in fits and starts. I would get better, and then take less of the B12, thinking that I was fixed. I also didn't realize that so many of my symptoms were B12 related.

Now I take it every day, without fail.

Numbness means that some serious damage has occurred. It can take many months to heal. For me, it took a year for most of my numbness to heal. I still have this numbness on my heel... maybe it's a reminder. But It's still getting better, slowly. I probably wouldn't notice it much, but I compare it to the other heel to check progress.

So, healing can be a lengthy process, and sometimes painful when nerves regain feeling. But each day gets better.

I'm happy to answer your questions, if I can understand, I may miss things. I know how frightening this can be.

 

[Stacy2012]

Thank you so much for sharing!

So do you believe the thing that healed/helped your neuropothy/numb heel was/is B12?

So you and your doctors are not concerned with your high levels of B12 in your blood test?

Did you do the active B12 test also?

thank you so much! So glad you are doing better!

 

[Stacy2012]

Oh, can you tell me what name brand of B12 and how much you take?

There is another post about how Jarrow is no longer working for some people. I got the Jarrow and ET based off Fredds suggestion but it appears many think jarrow does not work now.

 

[celeste]

Stacy – and Crux – this is the first time I’ve posted here, and it’s also the first time I’ve ever come across anyone else with high serum B12. Mine has been greater than 2500 for many years (with low MMA). I also have peripheral neuropathy, and always felt that lots of B12 in my blood and all the symptoms of B12 deficiency must mean that the B12 wasn’t getting to where it needed to be. No doctor has ever been able to fathom it – and when my neurologist asked his haematology colleague, he was told that no one could possibly have B12 that high!
I think there are lots of possible reasons for the problem – we have to keep looking for the answers, which is what I’m still doing. I have lots of other health problems too, which makes it complicated. I’ve certainly found, though, that lots of methylcobalamin has helped my neuropathy and I’m sure that taking it is for the good. I take a variety of brands, and still find Jarrow is working for me (perhaps mine is an older batch?). I’ve frequently taken up to 30,000mcg each day, with no ill effects. I’d reached the point where I had very little sensation left at all, anywhere in my body, so I had to give it a go and I’m very glad I did, because it has definitely helped.

 

[Crux]

Hi Y'all;

Yes, I do believe that it was the B12 that healed my numbness, because when I made the mistake of stopping it or taking less, it came back. I won't do that again.

I haven't had the active B12 test, but it looks like a good idea for people who may have trouble converting inactive forms to active forms.

I haven't had MMA levels tested... I'll search for what low MMA may indicate. We must become good detectives with figuring out what our symptoms and test results mean.

I've seen this well honed skill with folks here, it's awesome.

I'm now taking the brand AOR (Canadian). They offer many products that are available through iherb, but not the methylacobalamin. I ordered the Mb12 from National Nutrition, a Canadian company that our dear Sparrow recommended. ( I'm eternally grateful )

I take 5mgs. of the sublingual lozenge daily. It seems my condition is brittle, in that if I take much more than that, I have negative symptoms. What many people are finding here is that they need a specific amount for their individual needs. Although there doesn't appear to be a standard for everyone, I believe Rich has come as close as anyone can to forming a standard.

This leaves us to find which amounts suit us best...Very difficult...

P.S. My internist seems unnerved by my results. (inexperience) My endocrinologist said that once one begins B12, the measurements don't matter. I think they are relieved that my health has improved and that they are not to be held accountable for my issues.

 

[Stacy2012]

Celeste, thanks for posting, it always helps to talk to others. Even though each of us are individuals, and every case is different, it helps to talk and compare with others as we travel the journey to better health. So you have high B12 serum and low MMA results like me, very interesting.

wow, you take up to 30,000mcg of B12 a day?? That is a huge amount!

I had already made the decision to continue B12 and I am considering doing a B12 shot also.

Do you do the shots? At the mega dose you are taking it would seem shots would be better, right?

Crux:
"We must become good detectives with figuring out what our symptoms and test results mean."

TRUER WORDS HAVE NEVER BEEN SPOKEN~

I find myself dreaming at night about all the things I have read and researched and when I wake up, Im not sure anymore which parts are true and which are dream.

Maybe the shots will help me, the cost is 25 for a shot for me.

 

[Phred]

Hi Stacy,

I found an old thread where Freddd talks about his blood serum levels need to be at 200, 000 to heal. So really, 3,000 isn't that high. Here is the link http://forums.phoenixrising.me/index.php?threads/methylation-very-low-very-slow-results.9849/page-4

The whole thread is quite interesting and has some good information in it. Hope that helps.

 

[Stacy2012]

Thanks Phred!

I read it, but to be honest, I am ashamed to say that alot of what I read in this forum is difficult for me to follow. Im so new to this, and a lot of this is very difficult to understand. Most conversations start from a point of view that the reader already understands all the protocols and stuff. I feel stupid.

But I keep reading and researching, and I am learning.