Hello everyone hope you are all well!
Wondering if anyone has had the Methylation DNA test and has used it to help improve & ease there thyroid symptoms?
I have had one done and still have a thyroid function test waiting to be done too.Have a few things to sort before I do the function test but in the meantime wondering if anyone has had this and has it helped
Feeling quite sad knowing that for the first time I won’t get I reply from the lovely and ever helpful Susie.Prayers to her family x
Just wondering what makes you think you have a problem with methylation?
I did an Ancestry DNA test and then ran that through a functional analyser which showed I could have issues.
Then after while I did an OATS test through a functional practitioner/nutritionist that showed I was methylating fine but had other vitamin and fats deficiencies.
Its really hard to know what test to run to find your issues.
Just thought it could be useful in helping me feel better.I don’t convert Levo very well and have to take T3.Thought if there’s issues elsewhere then it cant be a bad thing to address them in the hope it helps
I did think that I had a methylation issue but it turned out that wasn't the case.
The thing with DNA tests is that they do show what SNP's you have but there's a chance that they haven't been activated which is probably the case for myself and methylation. Note I was already taking a good methyl B complex and extra folate as per blood results.
What most people here find is that once they get all key vitamins to OPTIMAL and then FT4 & FT3 to OPTIMAL then things usually fall into place.
It turns out that I wasn't lucky like that though so went for further vitamin and fatty acid testing which showed up further issues.
So where are you ate with vitamins and thyroid? What are your latest results?
Last results was a year ago.I have the new test sitting to get used.Will do that in the next 2-3 weeks.I have been feeling a lot better just a few issues remaining gave myself plenty of time this time around for things to settle.Just felt I just kept jumping in and it all went pear shaped.The insomnia is still bad and the anxiety is still there but no where near as bad.Get bad fatigue but I suppose the insomnia is the reason.Still on high blood pressure meds even though I’ve changed my diet and excercise a lot
Pst - don't overdo it on the exercise. I have read a lot on here about that actually making things worse. I used to fret now I am make an effort to change mindset and be much more relaxed about it. I'm pacing myself and low and behold my stamina is slowly returning this approach is starting to yield improvements to it is easier to go with the flow ...... I do occasionally feel the grip of anxiety about loosing ground on my recovery but I give my head a wobble. As good as I feel I sense there is further improvement just from being well for longer.
Hi Charlie
I did find I slumped badly after excercise before I upped my dosage and added T3.Still get it but not as bad.I have been thinking I overdo it.Thanks!
😘👍 take it easy jacobite - by the way your query has opened yet another door to stuff I knew nothing about and need to read. I love this place it is so challenging!
That’s what it’s all about! Take care for now 😉
can I ask what functional analyzer you used? I am awaiting my Ancestry DNA results.
I used this one from a recommendation here. mthfr-genetics.co.uk/
Its been very interesting seeing what I am made of, also what might be affecting my health. Of course theres very little that you can change as that is your DNA but you can work with it.
You do have to remember that although you carry certain genes they may not be activated and may never be activated.
It was more useful doing the OATS test to see what things my body required right now.
Body Fabulous.Found it online after watching a chap called Gary Brecka talking about health.He mentions thyroid issues but I take that one with a big large pinch of salt.Thats by going with everyone in here’s view.Once your thyroids broken it’s broken!
I had not a clue it even existed before just reading your post. I would be interested in finding out how things go for you. fingers crossed it helps you find answers 😊🤞
Hey Charlie
Got the results and just trying to work them out and was wondering if anyone on here had done a test and was just asking
Knowing the knowledge of everyone on here regards thyroid issues and the advice given it’s the best place to ask
Oh definitely - I'm still learning and reading virtually every day and it is sooo supportive. I hope you get answers 🤗
Stick in there Charlie! If I can get to where I am now from where I was anyone can! Said this before and will say it again these fine people gave me hope and advice and saved my life! I don’t say that lightly as I was in a really scary place!
Likewise no exaggeration - That's why I'm still here 😉👍I haver never known such a powerful force for good.
Hey there i did a ancestory dna test and then scrolled through the raw data report and found polymorphism that affect my ability to convert t4 into t3
Never heard of that.Need to scan my report as I need to take T3.Might get back to you on that one.Thank you!
This is the raw data sweep I did on dna and a response from the endo at the time I was working with, unfortunately he upped just straight t3 too quick and wouldn't listen to me, so I stopped seeing him.
Not to sure about the data sweep but we all know they don’t listen
jacobite33,
Yes, as methylation is so hugely important, if you are struggling to find well-being I think it worth knowing your SNP’s.
However, these impairments are not generally isolated but work with other genetics and so important to have your data interpreted by a practitioner in the know.
The rather pushes the price up and ideally once you know your quirks, doing an OATS urine test will show which genes have switched on and how your body is dealing with the quirks and what actions you need to take.
If you are interested in methylation and other systems with common impairments, a great book is ‘Dirty Genes’ by Ben Lynch who is the king of methylation.
The other place to find in-depth info are the INVEVO bite size webinars. They are aimed at practitioners but you don’t have to be one to sign up.
Thank you radd! Starting to give the shins a wee kick here! Jaydee1507 mentioned the OATS test.I maybe should have done that first instead!? I popped on here to look for previous posts about it but that was after I had ordered the test.Should have asked the question in a post here first 🙄
jacobite33,
No, it doesn’t matter which way you conduct the tests. Just remember the OATS will give you what is actually happening and the genetic test will offer some indication as to why these things are happening.
The important thing is to get these results interpreted by an experienced practitioner as they offer rich information that is too complicated for the layperson to understand. Many make the mistake of seeing SNP's and thinking they have impairments but SNP's can work positively as well as negatively dependant upon other genetics.
Thanks radd! Wee line from my results it says.Remember gene tests just tell us if you are more likely to have deficiencies/health issues - they do not mean it is inevitable.Plus I’m sure I read somewhere about the gene being active or inactive.So I just assumed the oats test tells you what’s happening in the now and thought that to be better.Yeh your right it is complicated.Maybe I should have got the video call to advise and explain from them.The test was about £350 which I think is way to much as it is and an extra £75 for a video call? Well I’m the dandy highwayman your to scared to mention i spend my cash in looking flash to grab your attention! Daylight robbery 😂
Agree absolute daylight robbery ☹️.
The only good news is you only have to conduct genetic testing the once!
Exactly once only! SlowDragon gave me a couple of links to look at.On a quick glance I’m thinking I maybe should have came on here first and could have saved a bit 😳
This website can analyse your raw DNA data
mthfr-genetics.co.uk/DNA/ab...
Hey the wonderful SlowDragon hope you well? Will click on the links and look in to them.Going by this i have the MTHFR-AA mutation and a few others.Once again thank you.Always helpful! 😉
You might find this reply of interest - it's old but still useful, I think.
healthunlocked.com/thyroidu...
Oh my goodness that is brilliant 🤩
I have never tested my own MTHFR status, but when I started taking methylfolate and methylcobalamin, eventually my almost lifelong eczema disappeared. And when I was a teenager I developed spots. They disappeared in my 50s after starting the methylcobalamin and the methylfolate. Hooray!
What is helpful is that both methylcobalamin and methylfolate can be taken by anyone. If they don't have an MTHFR problem I've never heard of anyone having an adverse effect (at least so far).
WELL DONE YOU! that sounds brilliant, may I ask what quantities you take, what time of day and where you get them from?
B12 - If my levels are good and I'm just trying to maintain them I will take 1000mcg methylcobalamin 3 days a week. If my levels have dropped I'll take the same dose every day of the week. I use this link to give me levels I should be aiming for. I'm not fussy about the brand of methylcobalamin I take, although I will try to keep the amount of excipients and fillers down.
perniciousanemia.org/b12/le...
perniciousanemia.org/b12/le...
I will sometimes add in adenosylcobalamin for a few weeks. There are four different kinds of B12 available for supplementation :
perniciousanemia.org/b12/fo...
Folate - If my levels are good and I'm just trying to maintain them I will take 1000mcg methylfolate 3 days a week. If my levels have dropped I'll take the same dose every day of the week. I always aim to keep my folate in the upper half of the reference range. If the range has no upper limit I try to keep my level at about 15 - 20 mcg/L.
I'm not fussy about the brand of methylfolate I take, although I will try to keep the amount of excipients and fillers down.
Some links about folate :
takecareof.com/articles/ben...
chriskresser.com/folate-vs-...
methyl-life.com/blogs/mthfr...
b12info.com/folate-b9-defic...
Thank you again!
Hi Humanbean had a quick read of that but will need to go back to it.Thanks very much!
Hi Jacobite, funny you should ask are I was researching this very thing yesterday. Wondering which test to do. I want the MTHFR test done but have been advised not to do it in isolation. Also this morning have just returned from the hospital after having a blood draw for thyroid. Will keep you informed of decisions.
Hi Sooty101 In isolation as in just test for the MTHFR alone? It is a very interesting thing and if it helps then great and if not then I know I don’t need to keep wondering.If you scroll through the replies I am getting you will get great info.Im thinking I should have done the OATS test first now! 🙄 😂
Hi Jacobite, yes in isolation meaning just the one test.. Why do you think the OATS test should come first?
Going by a reply I had I just thought maybe I should have done the oats test first.Maybe I’ve got it wrong.Does the oats tell you what your body needs now when the methylation DNA tells you are more likely to have deficiencies?
Just downloaded a sample OATS test result. Looks really complicated to me. Are you working with a functional doctor? Sometimes too much information and not knowing what to do with it can push anxiety levels up. It's a minefield.
Sooty it is a big minefield but we can only try
Thinking of trying these mthfr-genetics.co.uk/. Any thoughts?
Looking at sending them my results to advise me on.My file won’t upload to be sent though so sent an email asking if they can help me
I've just sent an email to Anne Pemberton a functional doctor on the site. I need help with all this stuff. I want my life back.!
My email has bounced, not very promising. Hope you get some results.
Did you copy and paste the email contact info? Sometimes it adds more that just the email address
My husband has just come across this blog.23andme.com/articles/o.... The plot thickens!!
The MTFHR gene and homocysteine is what I am interested in.I take 10mg of two 5mg types of high blood pressure meds and I’m not overweight eat healthy and exercise.My folate and ferritin tests hemolyzed (think that’s the word) in the last few thyroid functioning tests I done.I have had all the heart tests and got the all clear so wanted to know if this was the cause of my HBP.Maybe I should just have done a homocysteine test instead
It's so difficult to know, as we are all so different. Wishing you all the best with your tests going forward. Keep us informed.
In the end, knowing if you are MTHFR is handy, but you really just need to be sure of keeping your folate level up and taking methylfolate as opposed to folic acid. You may need a higher amount of methylfolate than the average person. Thats it really so nice to know but not especially useful otherwise.
I was interested to read you had done the DNA methylation test, my son before Xmas, was very interested in this being keen on the health ‘guru’ Gary Brecka. I was very sceptical it would have any benefit ( very expensive thru the guru at c£600 I think), and did lots of research on it. I already knew about methylation with for eg good quality supplements , but was also aware that ‘working’ DNA can switch itself on/off….so interested to know what you thought doing the test might be able to do for you…can you share?
Well there's nothing wrong with being sceptical Judith 😉 If people are not every knowledgeable a smooth operator with a convincing delivery can fool - especially when the BS is interspersed with identifiable truth (clever). But we shouldn't need to pick through it..... link below
healthunlocked.com/thyroidu...
Thank you for the link! I am surprised I didn’t see the discussion re Gary Brecka before…glad he was picked apart. Fortunately son went quiet about him, hopefully he followed up some of my links, but perhaps the cost niggled. I had gone ‘methyl’ for B12 and folate as advised here some years ago, so son was a bit surprised I knew anything about it.
’ I had gone ‘methyl’ for B12 and folate as advised here some years ago, so son was a bit surprised I knew anything about it.’
Oh Judith! Don’t you just love it when that happens 😂👍
Yes, but it’s rare you hear the outcome/ result etc…it seems to go quiet!
🤣👍 yup!
I don’t mind showing the results I have.If its a help help for anyone or a definite red flag then at least there’s a benefit there.Hey Judith I’m sure my test was only about £350
My son and his wife were going to do the Gary B test so that is why I probably remembered figure in high hundreds!
Yeh Judith they are expensive! Tried to copy and paste two links that SlowDragon posted.They don’t seem to be copying and pasting here properly.If you scroll back on my post and see them have a look Judith.They might offer a cheaper alternative
Yes I saw cheaper linked versions. I remember when my son first mentioned it I looked at mass DNA testing sites like Ancestry too as some of them have genetic health elements, but it was so complicated with so many genes tested…I assumed the high Brecka price was the report interpreting the genes/ combi rather than the test itself!
Well he’s American and doesn’t do the test over here.The company mentioned his name so I’m assuming there paying for the use of it
I feel I'm just not getting there health wise at the moment.Still got chronic insomnia and fatigue.The anxiety is still there but not as bad.I have high blood pressure and on 10mg of tablets eat healthily exercise and not overweight.Had all the heart tests done and healthy enough.It was Gary Brecka when I watched mentioned these things.So I thought is there a possibility if I get the test done can it help? It’s the things we do in search of trying to better our self’s I suppose
I can understand going down lots of routes trying to find out what might be the cause of our ailments…on Friday, after 3.5 years, I am getting to see a PoTS specialist ( tho meanwhile my preferred choice, and second pref., have retired)…a syndrome I have already DIY diagnosed but need a specialist to inform my GP to alter BP/HR drugs. Meanwhile, after over a decade, now on a diabetic course that seems to meet some of the oddities of my rare 3c diabetes. Everything takes soooo long, and I have limited funds and sadly dismissed belief that there is ‘a cure’. Not helped by the fact of a quite unconnected health problem, needing a new knee after a fall two years ago, and waiting lists just grow!
It does,it takes far to long.Hope you get on top of things Judith and start feeling better soon
I found that adding methyltetrahydrofolate in small quantities to my existing methylcobalamin supplementation made a surprising difference. I stopped again and tried to get the NHS to do some testing but failed so did do a DNA and a hepatic function for myself (not specifically for the thyroid but for general health as so many symptoms by that point). I have several SNPs in similar areas which may have an effect on each other - the MTHFR itself is only a single hetero, but could have been making life difficult further downstream where I have a more significant homozygous SNP. Magnesium was hugely helpful for me too. My symptoms tied in so well that I do think mine were expressed, not just theoretical. Best wishes
I found that adding methyltetrahydrofolate in small quantities to my existing methylcobalamin supplementation made a surprising difference.
One reason for this (based on something I read but never saved a link) might be that the body needs "real" folate (i.e. not folic acid) in order to make use of B12.
Yes, I suspect that you are right. We know that some of us don't process folic well - for me, a small amount in a multivitamin had been enough to have serum folate near top of range, and that dropped to mid range when I started taking a larger dose of methylfolate instead as well as improving some symptoms and losing others completely. One of my SNPs is on MTR (MS, CblG), right in the folate/one carbon cycles, and I knew I had a folate problem after mild spina bifida diagnosis at age 17, just no idea what that meant (until years later) and no advice given. This explains it all nicely (!) onlinelibrary.wiley.com/doi...
What type of magnesium do you take? how much of eveything above, what time of day and where do you get them from? I Have spent fortunes on supplements that I have reacted to
Hi, I am completely grain free, not just gluten free (and also dairy free). I react to a lot, especially fillers, and use supplements from Micki Rose's list of truly grain free ones, and as it happens the updated list came out today purehealthclinic.co.uk/2024... so I haven't actually looked at it yet! Suppliers are on the list. I've been on most of mine since 2017-2019. I use a lot of B12 as I know I need to, but you may not - about 9000mcg daily, divided doses - B12, I take Cytoplan sublinguals, methylcobalamin/adenosylcobalamin (500/500 mcg) and hydroxocobalamin (1000mcg), I also use Lamberts 1000mcg methylcobalamin tablets and Metabolics methylcobalamin liquid (not the adenosyl as it is not grain free and I reacted). I use about 500mcg folate split into a drop or two three times daily - Metabolics liquid methyltetrahydrofolate. And my magnesium is Better You sensitive oil spray, for the skin - I use three or four sprays onto inside of one wrist at bedtime and rub the two wrists together until it goes in. (Better You you can get direct from them, or H&B etc). With anything I start low and slow and only introduce one thing at a time. Some with methylation SNPs really don't do well with more methyl groups and others need them, so take it gently and see how you feel. At one point I was up to 1000mcg methylfolate but happier on a lower dose.
can I ask, how do you test your thyroid function?
we had genetic testing done on my son to see which Antidepressants would work best and one of the tests included was MTHFR, which he was hetero for. I looked into it it it became glaringly apparent to me that he got it from me given my own history. His NP prescribed him a methylfolate which we both are taking and she explained the OTC amounts won’t do much, that you need to start with 5mg and titrate up to 10 or 15. OTC is only 1, usually. She said if you jump up to 15, you could experience manic episodes. Slow and steady, all the way.
Further from that, I was just watching a reel of Dr Becky Campbell on MTHFR and she was talking about other enzymes that may be deficient and those fascinate me as well.
All the best to you.
From some of the prices mentioned on this thread and elsewhere, I think we might have passed the point at which Whole Genome Sequencing can become better value than specific tests which only analyse part of the genome.
I'm far from fully aware of the ins and outs, whether there are gotchas, etc., but on headline cost alone, WGS looks worth considering.
There might be further costs in getting analysis of the results. But at least you would have everything available!
If anyone has better understanding (which is easy to achieve!) or real experience, please feel free to correct my current impressions.
The trouble with any DNA result is knowing if any particular SNP is active. Its perfectly possible to possess a gene, yet it is lying there dormant.
This is where I found the OATS test far more useful to know what was actually happening.
That might be the case - but I really wasn't meaning to push any genome testing versus OATS, simply one genome test versus another, and even that couched in financial terms rather than anything else! 
LifecodeGX are offering 'core packages' for £399 which only touch on a fraction of what you could find in a simple Ancestry/23&me test for probably under £100.
How much is whole genome sequencing?
That’s who I went with LifeCode Gx
Are you doing this through a functional practitioner or nutritionist? They would really help you to understand the results.
This is the urine test I did which was a not disimilar cost if I remember rightly. I also did the add on fatty acid test which proved invaluable. gdx.net/uk/products/metabol...
I’m not Jaydee no but I’m looking in to getting it explained and being advised on
Prices are typically quoted around 1000 US dollars - but some are lower. Including (for example) special offers down to 199 US dollars.
However, who to choose, who to trust, is still a difficulty.
That sounds very expensive plus then you need someone to explain it all to you in relation to whatever your symptoms are.
$199 really isn't expensive!
And, if you look at it right, even up to $1000 is a phenomenally low cost per gene.
But I am sure that the direct to consumer tests will be coming down further - there is at least one company claiming $100 (cost to them, not selling price). Even with a sizeable profit margin, the costs are coming close to 23andme, Ancestry, etc. and they only do a small subset.
Thyroid tests 
Possible thyroid disorder?
Thyroid Genetic DNA
Thyroid update
THYROID AND ALMOND MILK / alternates
