Author Topic: Anybody been tested for MTHFR ?  (Read 498 times)

Deb 27

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Anybody been tested for MTHFR ?
« on: March 05, 2018, 04:08:18 PM »
So, I recently did my 23andme along with a health part.  You can plug your raw data (it's quite easy) into another software called  genetic genie.  I found out that I was homozygous for the MTHFR gene and that's not good.  I don't have the enzyme that converts  folic acid into the methyl form which is the  active form of folic acid that the body uses. I think this also involves B12. I hope I explained this correctly.....  This defect can also causes high homocysteine levels which is seen in heart disease.

You can google it and see what you think. I think the cheapest way to get tested is through 23andme.

I also had a problem with  Vitamin D. That might explain my low levels despite taking 2,000 mgs/day.  Now I am on  the   50,000/week dosage. Again.........

So, I started taking the methyl form of folate and methyl form of Vit B 12 and noticed I had much less fatigue and brain fog!!!!  I almost feel I thought I would pass this on to others.  Of course, you should always check with your doctor. Most mainstream doctors aren't familiar with methylation. It would be a functional medicine doc or Naturopath.

They say that this methylation problem is associated with a lot of chronic diseases.

Oh, I thought I would add that I am seronegative.......

I've noticed fewer SJS symptoms lately as well. It's a shame b/c now something is terribly wrong with my left knee. Murphy's law!!! You get one thing fixed and another breaks down!!! Grrrrr..................
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  prozac, Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, alpha lipoic acid, multi vitamin.

Joe S.

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Re: Anybody been tested for MTHFR ?
« Reply #1 on: March 05, 2018, 04:27:20 PM »
I knew you weren't but when I first say this I thought you were swearing :) No I have not had the test.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
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jazzlover

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Re: Anybody been tested for MTHFR ?
« Reply #2 on: March 05, 2018, 06:52:53 PM »
Yes, I have. I've been taking methylcobalamin shots for about 5 years. My doctor just switched me to the Hydroxocobalamin form.

PS .. I don't have the MTHFR mutation, though I may be an under methylator. Not sure.

I wish you the best of luck!
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

Deb 27

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Re: Anybody been tested for MTHFR ?
« Reply #3 on: March 06, 2018, 05:12:00 PM »
LOL Joe, I know. You think the people that named it  might have thought about that..........

 Jazzlover, I didn't know you could get the shots! Do you feel this has made a big difference in how you feel?? Are you antibody positive or negative?
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  prozac, Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, alpha lipoic acid, multi vitamin.

cccourt1942

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Re: Anybody been tested for MTHFR ?
« Reply #4 on: March 08, 2018, 04:09:30 PM »
Yes.  I have this.  Mine was found by my neurologist.  After determining I was having seizures (via EEG/MRI) he ordered a blood panel for whatever.  I've had so many blood draws==for so many things---I can't possible recall.  None the less---didn't matter, he found ONE thing he suspected and it's the MTHFR.  So he calls and tells me I need vitamin b-6.  I ask if I can get that on Amazon..and he tells me he'll have his nurse call me with the name/address/phone # to order it.  I asked why..and he explained (i'm not making this up) it isn't vitamin B-6 "vitamin" it is a vitamin FOOD.  a) I can't remember from where I ordered it, nor b) what the name of the product was.  AND..........it was expensive.  I got a break buying it 3 months at a time. 

Now then, I take the overpriced vitamin (food) and go in after 3 months for another blood draw.  If I recall, the number goes DOWN when it's worsening, and up/vice versa.  I could be mistaken about that. It was a squirrelly thing.  So he's MORE concerned about it.  I talk him out of going up to two per day (cost alone) and he okays it for 3 more months.  The NEXT quarter, the number was still "going the wrong direction" but much less differential.  I make an appointment and we have a heart to heart.  Of course I had read as much as I could ...and then there was an understanding of the situation.  I don't think (at that time) I knew it was inherited.  I believe he was the one who told me.  So--I ask how on earth and why on earth had he administered the test.  He was looking for it...and explained it's inherited.  He asked about autoimmunes in parents..and bingo (Mom w' plaque psoriasis).  He said that was likely the source (and btw, her father had plaque psoriasis---so safe bet).  I don't object but complain about price, and he said it was important for:  and I don't remember.  Honestly: I don't.  I raised my eyebrows and told him at my age (I am guessing I was about 72...and currently will be soon 76) and said if it wasn't one thing waiting to get me, it was another.  I kept this up---I am thinking about a full two years: every three months, the  result was ALWAYS going in the wrong direction.  I'm fuzzy here again, but I think I did more I'net search....and haven't a memory of why I did this, but I eventually announced to him:  Look-you said it's a mutation--you said there was little known---well let me say, I don't think anyone knows Vitamin B 6 "food" helps reverse what the genetic mutation did.  And then I said I wasn't going to take it any longer.  Amazingly enough, he agreed with me.  It isn't that it made me sick...it just never did anything.  And did I mention: it was expensive!!!  (Remember: this was within about the first year I had SjS...and was suffering sticker shock at all the meds....not to mention the exorbitant price of my seizure med. 

You said you got this thru your 23 and me genetics' option test...but not explained by a physician.  Ask a neurologist!

good luck, c3

And I haven't.

I told one person about this "mutation"...a lifelong friend who quickly checked amazon and announced I could get B 6 on Amazon.  The doctor HAD told me the vitamin b 6 you get at drugstores, amazon, etc is = to a pinprick's amount of B 6 compared to the B-6 "food". 
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

Deb 27

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Re: Anybody been tested for MTHFR ?
« Reply #5 on: March 09, 2018, 02:22:53 PM »
court, you should be taking methyl versions of your vitamins, that is the active form. This is what I have been told. You can get them at health food stores or even in a multi vitamin like Smarty Pants. Love that name!!! Good luck. I wish I had known this years ago b/c I feel better than I have in years. Of course, the universe then decided my knee needed to collapse on me, so I can't have a moment's peace with my health!!!!
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  prozac, Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, alpha lipoic acid, multi vitamin.