[Lara]

A general question... in a family with autism history.
I don't really want to go into too much detail at this point because it's not about me.

What are we looking at here consistently over a period of 8 years in one family member in particular?

High Red Cell Folate
Low B12
Always borderline anaemic.

Memory problems.
Energy problems.
Cognitive problems.

Most information I've found tends to indicate that low red cell folate is more common with low B12 levels. Is that correct?

Then I find information suggesting that if red cell folate is high then B12 levels will be low. Very confusing to a novice.

What is going on here? Any suggestions where I can look that may help us understand what is going on here?

I'd also like to know if a person who has extremely low B12 for a number of years and it has gone unrecognized by doctors can eventually recover?

We're thinking about running some genetic testing.

[mrsD]

High folate in the presence of low B12 is called the folate trap.

It is kind of complex...

The MCV in the CBC will be elevated or very very high and almost out of range when B12 is low.

People with neuro signs severe enough for a wheelchair or lost vision, may not recover 100% when B12 is fixed and returns to a more normal level. This damage would be at the spinal cord level, and be demyelinating.

But most people do get better, but it may be slow going.

http://www.ncbi.nlm.nih.gov/pubmed/6115113
If you type methyl folate trap into Google and look at images there are many graphs that may help understand.

You can see why doctors don't really understand all this. It is really difficult, and I only have a minor understanding of it too.

The testing to run would be the methylation DNA testing for MTHFR.

More at MTHFR.net

[Lara]

Thanks very much for that. Yes, it certainly is complex.

Should we be asking for Homocysteine and Methylmalonic acid (MMA) to be checked do you know?

We're going to do the MTHFR checks - daughter, son and self.

[mrsD]

If you can, do get the MMA. It will show if B12 is actually being utilized. (inactive B12 may be present in the sample and registering as a good level, but it may never get methylated and then really be able to work. ) The MMA level goes down as B12 helps metabolize it away, so a low result in this test is desirable.

Homocysteine is also a good test if you don't have to pay for it.
It will show if the 3 factors, folate, B6 (active form) and B12 are working to cycle the homocysteine. When high this substance is very irritating to blood vessels and is thought to damage them leading to atherosclerosis. But you may not need both tests if the MMA is high. That will tell you to do the DNA testing.

Part of the DNA testing is to evaluate COMT...this enzyme is involved with the methyl transfer in balancing neurotransmitters...so the DNA testing is helpful that way.
http://en.wikipedia.org/wiki/Catecho...yl_transferase

[bluesfan]

Lara
Just started today trying to do the same testing process for the much the same symptoms you listed. (details in my post: http://neurotalk.psychcentral.com/thread218283.html)
One article on diagnosing B12 deficiency that I found useful is at: http://www.aafp.org/afp/2003/0301/p979.html
It has a diagram illustrating the diagnostic path and test ranges are in both US and International measures.
All the best.

[Lara]

Thanks very much for the link. That's a great one I'll add to my bookmarks too. You posted a couple of other handy ones I found on PN tips too. I read your other post earlier and see we're basically doing the same thing.

I hope you get some answers when your test results come in.
Take care of yourself over there.

[caroline2]

We're discussing potassium a lot lately and I've read some where that folate can pull potassium from our bodies....as does BP meds including diuretics. I take a good amount of extra potassium along with what foods give me. I take folate and B12 and both are connected to lower potassium....and the BP meds.....I'd love not to take them....if I could only get there.

[Lara]

Thankyou. My daughter's potassium levels were high the last blood test about 4 weeks ago. She eats a very healthy diet. Doc suggested rupture of blood cells in the blood sample which happens frequently apparently. Her kidney is functioning ok. She certainly doesn't need to be supplementing with potassium at this point in time.

[mrsD]

Yes, Lara.... factitious elevations are common with potassium testing. Sometimes the lab labels the cells as lysed. (this was the case with my last test in fact).

Lysed cells can come from using a butterfly needle, or putting tourniquet on too tightly.

[Auntie Audrey]

“I'd also like to know if a person who has extremely low B12 for a number of years and it has gone unrecognized by doctors can eventually recover?”


Hi Lara, I’d love to know the answer to this question too. This is my current situation, and as mrsD says, it can take a long time for recovery. I’m just hoping in my case that I do get some type of meaningful recovery.

I’ve been supplementing with methylcobalamin for four months now and the results so far are negligible. The best I can say is that the nerve deterioration seems to have stopped and I can walk just a little bit better than I could before beginning supplementation with B12. I’ve also been taking vitamin D for the past three months.