Preparing for 23andme

[anxiousguy]

I am homozygous for a1298c mutation and negative (normal) for the c677T mutation in the mthfr gene.

I am waiting for 23andme to come back and I am just trying to do my homework and get whatever other testing that I need to get done done. I have had a ton - 30 plus pages - of bloodwork (including neurotransmitters and precursors) done last year. I am relatively health (no CFS or anything) other than my anxiety / depression / ocd.

My dr had me taking 1000 mg shots of methylcobalamin. A psychiatrist gave me 15mg of Deplin. I later learned that I had MTHFR mutations.

I am doing a phone consult with my dr this Thursday (weather pending) and will be asking him for a rx for bloodwork.

I am going to ask for:

b12

C (absorbic acid was off the charts low on fall tests. haven't been supplementing)

B6 (was very high in fall due to supplementing)

magnesium

copper

cortisol

rbc folate (high due to supplementing with folic acid all spring and summer under drs order)

What other tests should I have done so that I can "hit the ground running" when 23andme comes back? Some people have suggested getting hair metal tests done. I did get thousands of dollars in testing done last year. I would like to try and not get anything unnecessary as I spent 5k in medical out of pocket last year. At the same time, if I need something, I'd like to get it. I do live in NY which complicates things (lots of stuff isn't available in NYS). Other people have mentioned lithium testing. Is that essential? Can a regular doctor give me an rx for that? Or is that lithium test different?

I did talk to integrative psychiatry, but they couldn't tell me if their test tested lithium. I assume testing for metals is so that I can find that stuff out? I did have aluminum show up in a blood test in the fall.

My rbc folate was high in fall (due to supplementing with folic acid?) I have heard about this possibly contributing to cancer. Is there a way to lower this level? Does it naturally go down?

My gut "seems" to be in good shape. Testing showed no yeast, no celiac, no major food allergies. I have read in numerous places that the gut should be healed first before addressing MTHFR.

One thing I want to mention is that I have horrible health anxiety. I have done sooo much research and have had soooo much testing done that I want things as simple as possible. It seems that whenever I post a question that people suggest 50 more things that I need to do. I would like to keep it to the simple and imperative.

Last question: If I DO have a COMT, what difference does that make in the course of action?

Thank you in advance!

 

[Critterina]

My personal preference is to get a serum amino acid panel. This link will tell you something about it. For me, knowing my SNPs and what levels of chemicals occur at various points around the biochemical pathways was informative. If you look at what high or low amino acid levels may mean and look at where they occur on the methylation, folate, biotperin, and urea cycles, you see how things are operating. https://www.google.com/url?sa=t&rct...=bgi9xVflbDi7TC463kSsAQ&bvm=bv.61190604,d.eW0

What did that mean for me? I could tell that most my dietary amino acids that I wasn't supplementing were low. I started taking BCAAs (which relieved my deep thigh pain and temporarily my insomnia), and tryptophan. At a retest, my tryptophan was still low - guessing that since I have MTHFR A1298C hetero, the methylfolate I was taking was creating BH4, which was then using up my tryptophan - and methionine was low. I now take up to 1.5 g tryptophan/day, and 0.5 g methionine (half should come from diet). I also used a lot of probiotic/digestive enzyme supplements for a while, which has had a good effect.

homocysteine is not usually part of the amino acid panel, but I think it's a good add. Ask your doctor what he thinks.

 

[anxiousguy]

@Critterina

Thanks for the reply. Do you know how much that test costs? Metametrix is closed today due to weather.

I did have metametrix cardio ion panel done last spring. I think that has most of that info, right?

Would you worry about the lithium?

I have had homocysteine checked in spring and fall last year.


Thank you

 

[PennyIA]

I am homozygous for a1298c mutation and negative (normal) for the c677T mutation in the mthfr gene....
What other tests should I have done so that I can "hit the ground running" when 23andme comes back?

As a1298c +/+ myself, I've been meaning to get my amonia levels tested... not sure of the cost, not sure of the need.

I have been regularly tested for homocysteine levels (were high before) and vitamin D levels (tends low) before identification of MTHFR genes.

 

[anxiousguy]

Thanks @PennyIA

I had ammonia tested in past.

I just don't want to get 23andme back after 6 weeks and then take weeks and weeks waiting for other tests that I could get done in the meantime. I am trying to use this time wisely. The problem is that everyone things you should get certain things checked. There is a financial and practical limit to what I can do.

Thanks as always!!!!

 

[Freddd]

I am homozygous for a1298c mutation and negative (normal) for the c677T mutation in the mthfr gene.

I am waiting for 23andme to come back and I am just trying to do my homework and get whatever other testing that I need to get done done. I have had a ton - 30 plus pages - of bloodwork (including neurotransmitters and precursors) done last year. I am relatively health (no CFS or anything) other than my anxiety / depression / ocd.

My dr had me taking 1000 mg shots of methylcobalamin. A psychiatrist gave me 15mg of Deplin. I later learned that I had MTHFR mutations.

I am doing a phone consult with my dr this Thursday (weather pending) and will be asking him for a rx for bloodwork.

I am going to ask for:

b12

C (absorbic acid was off the charts low on fall tests. haven't been supplementing)

B6 (was very high in fall due to supplementing)

magnesium

copper

cortisol

rbc folate (high due to supplementing with folic acid all spring and summer under drs order)

What other tests should I have done so that I can "hit the ground running" when 23andme comes back? Some people have suggested getting hair metal tests done. I did get thousands of dollars in testing done last year. I would like to try and not get anything unnecessary as I spent 5k in medical out of pocket last year. At the same time, if I need something, I'd like to get it. I do live in NY which complicates things (lots of stuff isn't available in NYS). Other people have mentioned lithium testing. Is that essential? Can a regular doctor give me an rx for that? Or is that lithium test different?

I did talk to integrative psychiatry, but they couldn't tell me if their test tested lithium. I assume testing for metals is so that I can find that stuff out? I did have aluminum show up in a blood test in the fall.

My rbc folate was high in fall (due to supplementing with folic acid?) I have heard about this possibly contributing to cancer. Is there a way to lower this level? Does it naturally go down?

My gut "seems" to be in good shape. Testing showed no yeast, no celiac, no major food allergies. I have read in numerous places that the gut should be healed first before addressing MTHFR.

One thing I want to mention is that I have horrible health anxiety. I have done sooo much research and have had soooo much testing done that I want things as simple as possible. It seems that whenever I post a question that people suggest 50 more things that I need to do. I would like to keep it to the simple and imperative.

Last question: If I DO have a COMT, what difference does that make in the course of action?

Thank you in advance!

Hi Anxiousguy,

The B12 tests are all just about worthless. No matter what they say, the ONLY definitive way to see if you benefit from them is to do a trial. Many researchers state that very thing. There is a thread on here somewhere speaking about every B12 test including the HTC2 test (bound cobalamin) with links to papers showing why each of the tests is ineffective for showing sufficiency. If you are trying to see why it gets even more expensive and is even less useful because once a person is deficient and damaged, taking b12 is basically a lifetime situation, pragmatically speaking. Basically you will need the B12 if it is effective (right brands, right kinds, right methods and all needed cofactoirs, so setting up a real trial can be complicated) but that is the only definitive answer. As most people who end up here also have additional things like low CSF cobalamin (CFS/FMS by studies) and they don't do a spinal draw as part of the testing, the only way to tell is a trial and response rate done with all needed cofactors is near 100%, if money is no object to satisfy curiosity go ahead and buy tests to your hearts content. If money is tight, spend it on what you need to recover. The symptoms tell the story on that. Many of the other tests of many varieties are based on a population with chronic folate and b12 deficiencies and so these effects have become "normal" and are invisible to testing until there is already so much damage that you know there is a problem without testing.

There are a few tests that might be helpful if the interpretation is done properly but if done in the usual way will steer many people away from what could heal them. So good luck. 100+ doctors and $200,000 worth of treatment and tests were 100% worthless in getting a useful diagnosis and treatment that worked. Since I am recovered from CFS/FMS and know what worked my hindsight on the docs and tests is 20/20. They were 100% worthless and caused my all sorts of problems and side effects. If learning what doesn't work in 100+ different ways is useful then it was expensive research. By the time I found what worked, which was what I had predicted 25 years earlier (not available then) I was nearly dead.

 

[anxiousguy]

@Freddd

Thanks. I spent 5k last year (I make 40k), so money is definitely a concern.

Is there anything that should be tested in addition to 23andme as far as MTHFR is concerned? The Yasko board and others seem to advocate taking tons of tests and vitamins. There has to be a point where people can't sustain that. My problem is that I have anxiety / ocd / depression (not cf/me) so the more I read and the more suggested the more overwhelmed and anxious I get. It gets to the point that I am in tears. I haven't cried in 15 years (even when my Father and other loved ones passed in the last few years). In the fall I started having panic attacks and crying which I've never had before despite my lifelong mental problems. I wonder if this is from some supplementing in the past (b12 methylcobalamin shots?)

Thanks Freddd

 

[Critterina]

@Critterina

Thanks for the reply. Do you know how much that test costs? Metametrix is closed today due to weather.

I did have metametrix cardio ion panel done last spring. I think that has most of that info, right?

Would you worry about the lithium?

I have had homocysteine checked in spring and fall last year.


Thank you

I don't know how much that Metametrix test costs; my local Quest Diagnostics did the lab work. I'm sure LabCorp or whoever you usually use can do it, too. Yes, I'm sure Metametrix tests have that info, but it's not your only option. Has your health status changed much since then? Were you using the same supplements at that time? Do you want to post the results - amino acids and homocysteine? Or send me an email if you want.

I made a cheat sheet that shows how to supplement for given amino acid results - it makes it easier to check whether one supplement indicated by one result is contraindicated by another. I'm happy to share - and actually you could check the accuracy.

I don't worry about lithium; I try not to worry about anything (like right now, the tumor on my pituitary, the "historic snow fall" predicted for tonight). It's something you could have tested. We've done a crazy bunch of tests last year, but I don't think that was one of them.

I do take a half-dose of Bluebonnet chelated multi-mineral plus boron. It has no lithium, though. And the full dose put my selenium above the reference range.