• 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 (FM), 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.

MTHFR - But Can´t Tolerate Methylfolate (COMT?)

Messages
10
Hello together

I decided to sign up to this forum because I have massive Problems since I took Levothyroxine for my Thyroid.

My health went bad with the Thyroxine and I got Problems like Heat flashes, Weight Gain, My Blood Pressure and Bloodsugar went high and these Problems didnt went away without taking Levothyroxine.

So I went to a Hormon specialist, who told me that I have Problems with heavy metals and thats why I didnt tolerate Thyroxin.

And because I Had no metals in my mouth, he decided to make A MTHFR Test because People with this defect,have Problems with detox of metals etc.

So the Result for MTHFR was Heterozygous 677 and also my Homocystein is high in the blood.

But the Problem is: I dont tolerate Methylfolate. When I Take it (400mcg) , i always get headache, heatflashes and more :( My B12 ( Methylmalonacid) is also in the normal-high range.

What could be the Reason? Maybe a COMT Defect? That would explain why im feeling like im always high with adrenaline. But how can i treat it? SAM-E?

Thanks for every help!

Marcel
 
Messages
10
Okay people,

Yesterday I tried again Methylfolate 200mcg with Methyl B12 and I was heaving diarreah half a day later.
Normal folic acid is also a Problem for me (Like everyone with MTHFR)

I Dont know what the Problem is. Eventually another gen defect or I heard that Methyl Substrates shouldnt be used if you have heavy metals in your body?

Please does anybody has some advice?
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I Dont know what the Problem is.
I can only share what my problem was with taking B12 and methylfolate together--too big a dose of methylfolate. No way I could tolerate 200 mcg. I had to start with wetting a toothpick and dipping it into methylfolate powder as my starting dose. Now I can tolerate the normal dose but I had to increase very gradually.
 
Messages
10
Okay

So I am diagnosed With Hashimoto since 2014.
CFS since 2016.
My Symptoms we're at the beginning massive Fatigue, Obstipation and Being Tired all day.
So then i Started in 2014 With Thyroxine.Suddenly my symptoms got worser Like heatflashes,high blood pressure,Weight gain ,anxiety etc.
Some doctor Said it was adrenal Fatigue but Cortison made all worser.
So another doctor Said There are heavy Metals and so he tested me positive on MTHFR.
The Problem is: I dont tolerate Methylfolat, I get Heat flashes,diarreah and anxiety.

The same With chelators Like DMSA.

So now I dont Know what to do :(
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
If your MMA is high, you are deficient in B12. A lot of people focus only on folate and/or B12, without realizing that they are part of an entire process, working with other nutrients in a step by step process to detoxify.

If you then add DMSA, you are mobilizing toxins such that if you don't have the entire process working, the toxins will make you feel sick and then get reabsorbed by your body and it may make you feel sick.

It would be useful to educate yourself on methylation and the transsulfuration pathways, and then, ideally get some testing done, like a Genova Diagnostics NutrEval to see what's going on and customize a protocol.

If you can't test, it's best to work backwards from elimination - eat fiber, drink lots of water, get enough B1 and molybdenum to drive transsulfuration.

Then, before that, you need to make glutathione, which takes adequate B6, glycine, glutamine and cysteine (NAC).

Then work back to the methionine cycle, which uses methylcobalamin, B6, B2, magnesium, potassium, TMG and methionine.

And then you'll be able to add folate.

But, without the other stuff, just taking folate will make you sick, and can even potentially cause cancer.

Attached is a summary of what methylation is doing in your body, to help you understand why its so important to get right.

Best wishes...;)
 

Attachments

  • Methylation_Tasks.pdf
    85.9 KB · Views: 53