Is testing absolutely necessary before starting methylation?

[catly]

Hi I'm new to this forum and CFS in general having been diagnosed in May of this year, with symptoms starting in Feb 2012. I am on Valcyte for high HHV-6 and EBV, LDN, and Remeron for sleep. I also have hashimotos and recently (8/13) had surgery for a thyroid nodule that turned out to be cancer. I also take a good number of supplements.

Anyway, I want to try Rich's simplified methylation protocol from 2012 and plan to get the 23 and me genetic tests, but I don't have a way to easily get the health diagnostics meythalation panel. My CFS MD doesn't really believe methylation to be helpful and the rest of my MDs aren't believers in CFS at all. I guess I would have to find a functional medicine MD who would agree to to the testing, but they all cost a lot of money and I'm not sure any of the few around me know anything about the topic.

So my question is how bad would it be to start the protocol without further testing? My b12 and folate serum levels are usually high--without any supplementation--but I'm not sure that that really means anything if they are not getting into my cells.

My major issues continue to be PEM, general fatigue, insomnia, muscle soreness, eye pain, joint pain etc.

Thanks for any help offered!

 

[Ema]

In my opinion, the supps in the methylation protocol are relatively benign and unlikely to cause permanent damage even in high amounts. I started the methylation protocol without doing the Health Diagnostics panel.

I ended up doing it about 9 months after I had started and the results were very difficult for me to comprehend. I rarely see anyone post their results on that panel here. Quite honestly, I'm not sure how much feedback you would even get on it in the absence of RichVanK.

How high is your serum B12, I wonder?

I wonder if your thyroid hormone levels are also optimal? It sounds like you have been through the ringer there! If your doctor only goes by labs, sometimes one never gets to the most optimal levels of thyroid replacement.

Welcome to the forum!

Ema

 

[Valentijn]

So my question is how bad would it be to start the protocol without further testing? My b12 and folate serum levels are usually high--without any supplementation--but I'm not sure that that really means anything if they are not getting into my cells.

There shouldn't be any risks, especially if you're sticking to the basics. High doses of methylB12 can cause some issues, but hydroxoB12 should be quite safe, as well as normal doses of methylfolate.

23andMe doesn't require doctor approval, so you can get that pretty easily and see if you have problems with B12 or folate in your methylation cycle.

 

[catly]

Thanks Emma, that's sort of what I was thinking. My last B12 (may 2013) was 906 which was high normal (ref range 211-911) and last folic acid was 24 (ref. range >5.38).

 

[catly]

There shouldn't be any risks, especially if you're sticking to the basics. High doses of methylB12 can cause some issues, but hydroxoB12 should be quite safe, as well as normal doses of methylfolate.

23andMe doesn't require doctor approval, so you can get that pretty easily and see if you have problems with B12 or folate in your methylation cycle.

Thanks, I plan to order the 23 and me test this week.

 

[caledonia]

Ema - Rich wrote a great interpretation of the HDRI panel -
http://phoenixrising.me/treating-cf...esults-of-the-methylation-pathways-panel-2011

I've done the panel. It does confirm that I have glutathione depletion and that my methylation is really messed up. Really one of the only tests to show how sick I am, so in that respect, I like it. I made it into a graph one time, and in that form, it's easy to see how out of range things are. The idea is to use it as a spot check as you go along to see if you're on the right track, with methylation (hopefully) improving.

But in general, my suggestion would be to skip this test and get the Nutreval test instead. You can order it online without a doctor. The Nutreval will also confirm if you have methylation problems, but it will also show a bunch of other really useful things. Of course, it costs more. There is also the problem of where to get the blood drawn. This is not likely something Quest or a normal lab will know how to handle. I ended up going to an independent chain of labs called "Any Lab Test Now".

There can be adverse effects with doing a methylation protocol. It's not so much from the supplements in and of themselves, it's from restarting methylation. The main thing is to Start Low and Go Slow to minimize adverse effects. If you're feeling worse, stop the supplements and take 50-100mg of a slow release nicotinic acid form of niacin. This has saved my butt a couple of times.

Getting your SNPs done by 23andme is also a good idea, so you can figure out which supplements you will need. Plus it's a very reasonable cost.

 

[minkeygirl]

I had a lot of problems when I started Freddd's methylation. Because it was hard for me to understand (I"m the first one to say I don't get it) so when one thing got out of whack, I didn't know how to fix it and subsequently got really sick and stopped.

I found a naturopath I'm going to see in October I hope who does work on Methylation. I just googled looking for integrative or functional medicine docs in my area.

Another thought is Amy Yasko's new All-in-One new supplement. She says it has pretty much what everyone needs for methylation in a lower dose. Someone started a thread on it here.


http://www.holisticheal.com/all-in-one-multi-vitamin-mineral-120-capsules.html

 

[catly]

Hi Caledonia,
I've read many of your posts, thanks so much for replying. I checked out the Nutraeval on the Genova website and unfortunately, they now require the tests to be ordered by an MD/OD. I was able to submit a request to them for a doctor in my area so, hopefully I'll get a response. I might call one of the local functional med groups and see if they have any experience with testing for methylation.

Ema,
I'm sorry I missed the second part of your reply earlier, I've been on 50 of levothyroxine + 1/4 grain Nature Throid for several months now and my TSH last measured post partial thyroidectomy was 0.6, free T4 was 1.4. My endocrinologist wants my TSH suppressed (low) because of the cancer but he refuses to measure Free T3 and refuses to prescribe T3 meds--he's letting me stay on the Nature Throid because I was on it when I came to him and he likes where my test results are.

 

[Ema]

Nutreval is available here without a doctor:

http://www.truehealthlabs.com/nutreval-test/

Ema

 

[catly]

Nutreval is available here without a doctor:

http://www.truehealthlabs.com/nutreval-test/

Ema

Thanks, price is really a shocker and looks like the closest "any lab test now" site is nearly 100 miles.

 

[Ema]

Thanks, price is really a shocker and looks like the closest "any lab test now" site is nearly 100 miles.

The price is a shocker. If you have insurance, you can usually get it for a vastly reduced price so I would check around. I think it was going to be around $150 that way for me but of course all plans vary.

Quest labs will usually draw for specialty kits. They have drawn several for me.

Ema

 

[Ema]

Ema,
I'm sorry I missed the second part of your reply earlier, I've been on 50 of levothyroxine + 1/4 grain Nature Throid for several months now and my TSH last measured post partial thyroidectomy was 0.6, free T4 was 1.4. My endocrinologist wants my TSH suppressed (low) because of the cancer but he refuses to measure Free T3 and refuses to prescribe T3 meds--he's letting me stay on the Nature Throid because I was on it when I came to him and he likes where my test results are.

Sorry you have such an inflexible endo that obviously does not like his patients to feel their best! How frustrating.

1.4 is on the high side for where women feel well in terms of FT4. Usually women do better between 1.2-1.3. It's hard to say how you're converting without FT3 unfortunately. At 1/4 grain of NTH, you're essentially on no T3 anyway which is probably why he is OK with it.

Ema

 

[Ema]

Ema - Rich wrote a great interpretation of the HDRI panel -
http://phoenixrising.me/treating-cf...esults-of-the-methylation-pathways-panel-2011

I read that a long time ago and came to the conclusion that my methlation was crap based on my results. But then when I asked Rich to comment directly, he said my panel looked great. So I must not understand that write up very well! Unfortunately, I never got to follow up with him on what he was seeing that I didn't.

Ema

 

[caledonia]

Hi Caledonia,
I've read many of your posts, thanks so much for replying. I checked out the Nutraeval on the Genova website and unfortunately, they now require the tests to be ordered by an MD/OD. I was able to submit a request to them for a doctor in my area so, hopefully I'll get a response. I might call one of the local functional med groups and see if they have any experience with testing for methylation.

catly, you can get it from Integrative Psychiatry - see the link in my signature. I think that's the best price. You use "their" doctor to rubber stamp it. So you don't need to use your doc.

 

[Crux]

My last B12 (may 2013) was 906 which was high normal (ref range 211-911) and last folic acid was 24 (ref. range >5.38).

With an elevated serum folic acid of 24, ( some ranges include ranges of : ( 3.0 - 21.0 ng/ml ),
You may want to avoid folate supplementation for a time. I believe it to be very important to completely avoid folic acid, found in fortified and enriched foods.

There is alot of debate about whether elevated folate, ( unmetabolized folic acid ), is a cause of cancer. I think it depends on an individual's metabolism, and genetics.

B12 aids the metabolism of folate, so, beginning with a reasonable dose of B12, could help reduce the elevation of folic acid.

http://www.degruyter.com/view/j/pte...ines.2010.21.1.17/pteridines.2010.21.1.17.xml

 

[Ema]

I'm not certain how reliable a serum folate test is...it seems that I remember that the answer was not very.

Ema

 

[catly]

The price is a shocker. If you have insurance, you can usually get it for a vastly reduced price so I would check around. I think it was going to be around $150 that way for me but of course all plans vary.

Quest labs will usually draw for specialty kits. They have drawn several for me.

Ema

$150 range would be great, I guess I need to call my insurance company to see if they will reimburse some of it. I have to go the Quest this week for another lab test, so I will ask about a specialty draw.

 

[catly]

With an elevated serum folic acid of 24, ( some ranges include ranges of : ( 3.0 - 21.0 ng/ml ),
You may want to avoid folate supplementation for a time. I believe it to be very important to completely avoid folic acid, found in fortified and enriched foods.

There is alot of debate about whether elevated folate, ( unmetabolized folic acid ), is a cause of cancer. I think it depends on an individual's metabolism, and genetics.

B12 aids the metabolism of folate, so, beginning with a reasonable dose of B12, could help reduce the elevation of folic acid.

http://www.degruyter.com/view/j/pte...ines.2010.21.1.17/pteridines.2010.21.1.17.xml

Wow, thanks for the link Cruz and suggestion. I'm really beginning to think I'm going to needs some baseline lab tests before I start any protocol.

 

[Critterina]

$150 range would be great, I guess I need to call my insurance company to see if they will reimburse some of it. I have to go the Quest this week for another lab test, so I will ask about a specialty draw.

If Quest is doing a draw for something they process at the same time, they don't charge you the draw and processing fee that they would (about $36) if you were only having the NutrEval test alone.

 

[Critterina]

Wow, thanks for the link Cruz and suggestion. I'm really beginning to think I'm going to needs some baseline lab tests before I start any protocol.

I've got a dissenting opinion (in contrast to Crux's) - that supplementing methylfolate is not contraindicated by high serum folic acid. If you're perhaps MTHFR C677T, you're not making methylfolate efficiently, and not going to be using up the folic acid - you just can't convert it so it hangs around. And if that's the case, taking MB12 could deplete what methylfolate reserves you do have - particularly if you've got the MTRR and MTR polymorphisms. I could go into a big what-if scenario, but you get the idea.
So, perhaps start on small doses of both methylfolate and MB12 (or hydroxyB12, as Valentijn suggests.) See how you do. And Low and Slow, like caledonia says - best advice around.