• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

High homocystine, but why? Methylation report inside

T

Tom_Nightingale

Messages
34
Hi everyone,

I've just gotten results back from a methylation blood panel done after I was just hospitalized. :( Long story short, I was dealing with neurological symptoms similar to Myasthenia Gravis, but once I was hospitalized (and taken off my supplements) I got better. After being discharged I discovered I had 5x upper limit of B6 in my plasma. Which was upsetting but surprising, as I had a urine amino acids test done just 2 months ago that showed no B6 metabolites. I was told to try 100mg of P5P, and 2 months later I was in the hospital.

What's even more peculiar is that I'm looking at my methylation report, and something is strange: https://drive.google.com/file/d/0B2aK7-_YzJAtZ0NRWDFiakpDV00/view?usp=sharing

My Genetic Genie: https://drive.google.com/file/d/0B2aK7-_YzJAtcmRhYjN1dndzcjQ/view?usp=sharing

If B6 is a cofactor for CBS, I should expect to have lowish homocystine if I had just been hospitalized with a high B6 level, right? I do have BHMT mutations (+/+)

I've been trying to get methylation working for me for forever. I nearly always read about people either struggling with too fast a CBS or a CBS that works normally. I know nothing about CBS that works too slowly, and I wonder if that is something I am dealing with here?

I have quite frankly terrible numbers as far as methylation goes. I found 50mg of SAMe to be helpful right after the hospitalization, and no wonder. My SAM/SAH ratio is quite bad, and with this high homocystine there should be no reason for it not to be bad.

2 ideas pop up here: 1) looking at Dr. Ben's Pathway Planner poster, I see that Serine and Cystine are needed for Hcy to become cystathionine. Luckily, I have a plasma amino acids test with results coming very soon. I can see if I'm lacking in either amino acid. But do I have a problem elsewhere on the transulferation pathway? 2) MTR is supposed to pull homocystine into the methylation cycle. This is the cobalamin dependant portion from what I understand from the Planner. I did have a low methylmalonic acid (B12) level at the hospital. Perhaps there is an issue to address there?

The prospect of a transulferation pathway problem is daunting. I don't know what to look for. I have a great methylation report from MTHFRSupport that will show me mutations for many more genes. I see I have 2 mutations (+/+) mutations of the CTH gene (there are 7 CTH genes on this report, the rest are (-/-) )

Anyone run into this before, or dealt with it themselves?

Thanks, and please let me know if the links work for you!!!
 
T

Tom_Nightingale

Messages
34
I do :( I took B6 again after I was discharged, because I wasn't told about the high level. That very day I was able to get a printout of alllll the labs they did, and there it was a high B6. I was feeling quite worse that day, terrible I found out just hours too late before I took another dose. In talking with others with B6 toxicity (there is a large group on Facebook) it seems as if everyone's experience is that doctors have no training in how to respond to high B6. Pretty much on our own
 
PeterPositive

PeterPositive

Senior Member
Messages
1,426
There is a risk in taking a high dose B6 supplement especially if you're already low on other components of the B family, such as B12 etc... They all work together, and the lack of one can block the action of others or increase the risk of potential side effects, etc...

Your homocysteine, overall, isn't that bad, only slightly elevated but the methylation panel doesn't look good indeed. Have you tested your folate and B12 status perchance? (E.g. methylmalonic acid etc...)

Also, as a side note, all of the methylation panel results I have ever seen all look the same, just like yours :)
The same pattern of low SAM, GSH and high SAH and adenosine recurs like Xmas on the 25th of December ... It's still not clear to me if this cause or effect of chronic illness...
 
V

Valentijn

Senior Member
Messages
15,786
Tom_Nightingale said:
I've been trying to get methylation working for me for forever. I nearly always read about people either struggling with too fast a CBS or a CBS that works normally. I know nothing about CBS that works too slowly, and I wonder if that is something I am dealing with here?
Click to expand...
The fears about "fast" CBS SNPs are almost completely baseless. CBS C699T is an up-regulation, but it's a very mild and beneficial one.

The pathogenic mutations on the CBS gene are all serious down-regulations. I've got a list of the ones tested by 23andME, which are shown to have an impact in the available published research, at http://forums.phoenixrising.me/index.php?threads/interesting-cbs-variations.24492/
 
You must log in or register to reply here.