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    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.

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Results are in; I'm compound heterozygous mthfr (c677t/1298c), nice knowing you guys :O

acrosstheveil

Senior Member
Messages
373
anyone know if numb extremities, tingling mouth, and tinnitus a sign of too low methylfolate? otherwise I think i may have mast cell activation disorder...
 

drob31

Senior Member
Messages
1,487
Could you be over methylating? I have tinnitus, very very mildly, but it only occurred after my "adrenal" incident, which I now think is a hypothyroid symptom with adrenal involvement.... caused by stress, but prolonged by my bodies inability to heal due to.........MTHFR?
 

caledonia

Senior Member
Did you have hashimoto's? According to my bloodwork I don't have any of the antibodies. Actually according to my bloodwork, everything is A-OKAY, it must all be in my head.

But I do have all of the classic hypo symptoms, and infact I've had them for a long time, just not to the degree I'm having them now.

Yes, autoimmune thyroiditis, also known as Hashimoto's thyroiditis - very high antibodies initially, while all my other labs looked normal.

Have you done a 24 cortisol saliva test?
 

drob31

Senior Member
Messages
1,487
Nutrahacker says I'm heterozygous on rs1800562. This means I may be susceptible to having hematochromotsis, which surprise surprise, causes every symptom I currently have. I have not tested iron or ferritin either.

HRMMMMMMMMMMMM
 

drob31

Senior Member
Messages
1,487
Yes, autoimmune thyroiditis, also known as Hashimoto's thyroiditis - very high antibodies initially, while all my other labs looked normal.

Have you done a 24 cortisol saliva test?

Yep.

http://curezone.com/upload/_A_Forums/Adrenal_Fatigue/zrtresults.png


I'm communicating with a yahoo group of people who specialize in adrenal and thyroid disorders. They told me that my saliva test is not accurate because of the following:


"Unfortunately, taking an adrenal glandular during the two weeks prior to your cortisol saliva test would very likely have skewed the results. It would really be best if you could discontinue anything that affects cortisol or the HPA axis for at least two weeks and redo the saliva test. That would include rhodiola, melatonin, PS, but not the benedryl. You can also try eating a high protein, high fat snack at bedtime (no carbs) to see if that helps you stay asleep."


"> Were you off the meds and supplements listed here,
> <http://www.adrenalsweb.org/meds-supplements.php http://www.adrenalsweb.org/meds-supplements.php>,
> for two full weeks prior to the test?
> Was the test done on a day of normal stress,
> according to your normal sleep schedule?
> Did you exercise at all that day?
> Were the vials frozen when they were filled?
> Was the kit overnighted to the lab, to arrive on a
> weekday morning?"


Since I can basically answer NO to most of these, they say my test is bunk.
 

acrosstheveil

Senior Member
Messages
373
Could you be over methylating? I have tinnitus, very very mildly, but it only occurred after my "adrenal" incident, which I now think is a hypothyroid symptom with adrenal involvement.... caused by stress, but prolonged by my bodies inability to heal due to.........MTHFR?


it's quite possible. when i take niacin the symptoms vanish for a few hours but then I run into other symptoms of undermethylation such as low energy and brain fog. i can never find a balance...
 

drob31

Senior Member
Messages
1,487
I'm not really feeling anything... or at least I can't tell from the methylfolate.

Maybe I should mega dose until I feel hyper... then take niacin. I'd rather have anxiety and be hyper than have brain fog and fatigue.
 

acrosstheveil

Senior Member
Messages
373
that approach seems to work well for me. I took 500mg of niacinamide after taking higher than normal doses of methylfolate yesterday and i'm feeling unusually good. maybe niacin could be part of the "deadlock quartet" in some instances. Maybe niacin is a necessary cofactor in certain mutations or combinations of mutations.
 

drob31

Senior Member
Messages
1,487
This is a very good point. I know that Ben Lynch recommends niacin as nicotinic acid.