• 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.

Low Homocysteine

Messages
13
Location
Australia
Hi guys,

I'm new to the forum but was wondering if you could help me out. I've had CFS for 6.5 years and in recent months I've found out that I am MTHFR homozygous C677t. This is usually associated with high homocysteine, however, my recent blood tests (and tests I've had in the past) have come back low (4.7 umol/L, reference range 5 - 15). I I also have high B12 (serum and active). Can anyone tell me why my homocysteine is low? I've been supplementing with methylfolate and methylcobalamin for over six months but I haven't noticed any improvements. Do I need to supplement with glutathione and methionine?

Thanks in advance.
 

PeterPositive

Senior Member
Messages
1,426
Hi,
your homocysteine is just slightly low and definitely doesn't seem to be affected by the MTHFR defect, so you don't need to take extra methyl donors. Maybe the value will return in range when you stop taking them. :)

Possibly a higher amount of methionine could increase the circulating homocysteine, but it's not that simple.

In any case MTHFR C677T++ needs to be treated with B9/B12 in presence of elevated homocysteine and often times a change in the diet can fix it just as well.

I have the same defect and my Hcy levels are not very easy to keep in check so I have to take plenty of those supplements... :rolleyes:

Bottom line: unless your doc prescribed folate and B12 I don't think you really need them, at least given your homocysteine status.

cheers
 
Messages
13
Location
Australia
Thanks for your reply.

I wasn't taking the extra methyl donors before I found out I had the mutation and my homocysteine was still low. Could this mean that I'm an undermethylator?

Thanks for your help. I'm still pretty new to all of this.
 

PeterPositive

Senior Member
Messages
1,426
Thanks for your reply.

I wasn't taking the extra methyl donors before I found out I had the mutation and my homocysteine was still low. Could this mean that I'm an undermethylator?
Your low homocysteine level seems to say otherwise. An undermethylator (like myself) typically has high homocysteine levels, mine got up to 98 at one point... and I still have to take quite a lot of supplements to keep in the 11-13 range.

To fully evaluate your methylation status you should do a functional test where they measure your folate status, SAM/SAH, GSH / GSSG etc... such as that offered by this lab:
http://www.hdri-usa.com/

If taking folate/B12 didn't help it's likely you don't need it. People with methylation issues typically react to those supplements pretty strongly and need to build up their levels slowly over time.
 

Aerose91

Senior Member
Messages
1,401
Hey @seethatlake, just came across this and i have the same markers as you; +/+ MTHFR C677T and my methylation panel showed low homocysteine and blood tests have shown low MMA and high b12 levels.
My methionine was on the higher side of normal so thats not a problem but my cysteine was on the lower side of normal. Im not sure what may be sucking up the cysteine and cystathionine but i may not go overboard on the methyl supp.s anymore and change over to NAC, taurine and maybe undenatured whey. I'll still take b2 and b6 to support the methylation cycle though.
 
Messages
13
Location
Australia
Hi @Aerose91. Thanks for your reply. All the best with changing your supplements, hope it gives you some improvements. I've stopped taking the methyl B12 and methylfolate and I feel exactly the same. I was reading a lot about supporting the methylation cycle (as well as the mitochondria cycle) and I found that everything came back to the same things - vitamin and mineral deficiencies (particularly magnesium, zinc, manganese, B6, and copper toxicity). As such, I decided to get a hair analysis test done and I found out that I'm deficient in calcium, magnesium, sodium, potassium, iron, manganese, selenium, chromium, zinc, and phosphorus. It's kind of fascinating to read about it all (it's called Nutritional Balancing) and how tissue deficiencies of these minerals affect everything your body does. I think my methylation defects are simply a symptom of all these imbalances.

@gregh286 I'm not a doctor so I can't advise you on what you should do sorry. But if my levels were in the normal range then I wouldn't be too concerned and I would just continue to monitor them.
 

Aerose91

Senior Member
Messages
1,401
@seethatlake i am the same- took high amounts of methyl supps and felt nothing, so i stopped all together and felt no difference which is what led me to do the methylation panel.

I have been doing nutritional balancing for a couple years now. Seems like most of us have the same issues; low zinc, high bio-unavailable copper, low manganese etc.. the supp.s you get from endo-met are pretty good, they have proper balances of everything. I hope you have some success with it!
 
Messages
13
Location
Australia
@Aerose91 Oh, that's awesome! How have you found it? Have you seen improvements from it? I'm just about to begin my treatment and I'm not sure what to expect or how long before things begin to change.
 
Last edited:

Aerose91

Senior Member
Messages
1,401
@Aerose91 Oh, that's awesome! How have you found it? Have you seen improvements from it? I'm just about to begin my treatment and I'm not sure what to expect or how long before things begin to change.
I had started it when i had adrenal fatigue but it was less than a month when i got encephalitis which triggered M.E. Since then, for the past 2 years i just found out ive been living in a moldy house so i am working on improving my environment before re-starting any treatments. However, friends i met with AF who stuck to nutritional balncing had great success with it within a year's time. I hope the best for you!
 
Messages
13
Location
Australia
Sorry to hear about the mold trouble. I know that's causing serious issues for people. Would it be worth supporting your body nutritionally at the same time though? Also, would the AF be closely related to the ME? I've got severe AF so I'm hoping the nutritional balancing will give me some significant improvements.
 

Aerose91

Senior Member
Messages
1,401
Im in the camp of believing that you can't supplement your way out of a bad environment. A year ago i put this to the test by moving out to the desert to camp and it made a world of difference. Prior to that id been supplementing, eating perfectly, detoxing and doing every therapy under the sun for 4 years and made no progress. 1 month in the desert and I'd already made more progress than the previous 4 years combined.

A freak sandstorm put an end to that and i had to return to Connecticut. Doing all the same therapies and same routines I'd done in the desert and THEN some, i was back to my old, sicker self within 2 weeks.

One thing that was significant was i noticed my digestion got worse, eating all the same stuff i started getting malapsorption issues, GI trouble and pain all over. I didnt even realize these things were gone while camping until i returned home.

I got so sick of it i just recently took off for the Florida panhandle where im living in my car- that's how important i think environment is. Ive been here 3 days and with the clean air, morning sun and grounding and im already starting to pull out of it. No supplement regimen ever did that for me. Now that im here im going to start my supplements again, including the nutritional balancing stuff. I believe i have the foundations in place here where supplements can actually work.

Just my .02
 
Messages
13
Location
Australia
@Aerose91 Thanks for sharing your experiences and for helping me to understand it a little better. It would make sense that you wouldn't be able to heal when you're continually being poisoned. I really hope that you'll be able to make significant improvements away from that environment and I wish you all the best with it =]
 

Aerose91

Senior Member
Messages
1,401
Thanks, @seethatlake. It took me a good 3 years to figure out how important clean air and full band sun are. However, back to the question at hand, i do think that if you're environemnt is good nutritional balancing can help significantly with AF.