Hi
Has anyone sought MTHFR testing?
I saw the following site mthfr-genetics.co.uk/ where you get the test done and contact one of their practitioners for discussion of results.
I have seen it discussed on US boards and wondered about UK experiences.
Thank you.
Hello ariel1973,
I had the MTHFR test done quite recently and it exposed a 50-60% risk of methylation impairment. My nutritionist organised the test and read the results but I would say they are easy to interpret as the results are actually typed up in easy to understand English so having a practitioner is not imperative.
Armed with this information I approached my doctor to request an active B12 blood test but he hadn't a clue what I was talking about and suggested I ask my haematologist at today's appointment.
My haematologist didn't recognise the active B12 test either but was vaguely interested in the MTHFR genetic testing given that she had genetically tested me for the defective genes diagnosing Heamochromotosis. ( I start therapeutic monthly phlebotomy next Tuesday....yikes).
So I came home, learnt I can get the active B12 blood test on the national health with a doctors letter but have to travel to St Thomas's Hospital in London.
I ordered a Blue Horizons private blood test online!
I would recommend the MTHFR test as it is not expensive and could indirectly expose a B12 deficiency that might never be discovered. I have high blood serum levels of B12 so my doctors consider my levels sufficient and not in need of any further investigation.
Flower007
That is really interesting , thank you for sharing. I might use the site I was looking out and go from there unless I see it cheaper elsewhere.
I have been looking at the Seeking Health supplements to support me if I have MTHFR, but realising that I could actually end up just producing very expensive wee (!), I think the testing would actually prove cost effective in the long run.
Thank you again Flower 007 
Yes, quite agree as at least you will know if you actually need those very expensive supplements or not!
I supplement Functional Nutrition B Complex.
Flower007
Hate to say but many of us with mthfr issues are low on b12. But labs show us to be ok. So, it is possible you are really low, not fine. Join mthfr on Facebook groups and people will explain why this is.
Hi I hope you receive this as the post is old 
my b12 is over 2000 and thinking of trying to get that mthfr test done ? Did you have phlebotomy for high b12 ? Hope to hear from you many thanks Lynn xxxxx
Hi I know this is a old post but I have high b12 over 2000 did you have the phlebotomy because of high b12 ? I'm also hypothyroid hope you see this post many thanks Lynn xxxxxxx
Hi keep leaving a comment in the wrong place I know it's a old post but did you have the phlebotomy for high b12 ? Mine is over 2000 and is it worth having the MTHFR test ? Hope you see this many thanks Lynn xxxxx
I've been considering this for a while just to rule it out. Can you test without a practitioner and if so through this site or another? Is it just a cheek scrape?
Thanks in advance
23andMe.com. Then send it on to Livewello.com for interpretation. It's fantastic I did it as well as most of my Facebook friends in the mthfr 1298 groups.
I did my Genetic tests with 23 and me for £125 and then you input your raw data into websites I found via stopthethyroidmadness.com/m.... They are easy to interpret and you also get loads of other genetic information, so for example I found my MTHFR was ok, but my Vitamin D receptor is impaired. My DIO2 is also severely impaired so I can't convert T4 to T3 well. If I had just done the MTHFR test I might not have that (and many other) results.
It's well worth it and you just have to spit in a tube. Also tells you familial genetics - fascinating.
Hi just wondered what you can do to address faulty vitamin d receptors? Do you take more vitamin D?
maybe liposomal for of vit d?
old comment I know, but you need higher intake of vit D to offset conversion issues. Liposomal vit D is not a thing (maybe you're thinking of liposmal B12)
I think it is the next step for me... too many questions that the docs are uninterested in, but I need to put the whole picture together. It is good to know that you can have a go at understanding the results first and then if no luck, take results to a trained practitioner. Thank you.
I also had the 23andme done and i felt I did need an interpretation so consulted with a US practitioner via Skype. He stresses the importance of interpreting the whole picture , the whole person , not just individual mutations or polymorphisms. He uses a detailed history plus synptoms plus the test to assist nutritionally. He actually uses seeking health supplements. The danger with it is that some practitioners interpret single strands without using history , sumpyoms etc. The skill - from my own research this is what I understsnd - is that some mutations are expressing or causrs other strands to express and the practitioner must be skilled enough to know or interpret the whole thing together.
I also have MTFHR, and a thyroid double mutation !! Suprise Suprise. Lots of inyerest showed up but it has to go to the right hands for an action plan.
I got it done due to being so chronically unwell for so long and not responding to thyroxine and wanted to see if I could be taking things to help my recovery. A need for extra b12 showed up too. Very interesting ancestry stuff too !!
I am interested in the ancestry point of view too - I have an interesting heritage and no real info about it - maybe shed some light....
Interesting that it picks up the things we are going around in circles with, though
I'd be really grateful if you could share the name by PM of the US practitioner you consulted by Skype as I have been looking to get my 23&me data interpreted from a whole picture perspective. Many thanks in anticipation of your help.
What do you mean by a double thyroid mutation?
Some genetic mutations are single strand mutations ( heterozygous ) and some might be double ( homozygous ). When you run the report thru one of the sites suggested , they categorise them and some relate to immune system or methylation etc. Some relate to thyrpid so I had a double mutation ( Eg two strands from both mother and father sude - I think ) which made me predisposed to thyrpid issues.
Probably my natural caution with the internet but I'm concerned about where my genetic information would actually go and who keeps it. I think I would be happy if it is just me and the lab and maybe a good practitioner. I am very interested but need to look into it more. Thanks for info.
I hadn't thought about the use of my data by others, might be worth seeing if they have a strong privacy policy before going ahead, thank you.
You should go to 23andme.com and do it yourself it's just 99$. Then send it on to Livewello.com and they will interpret it for you for $10. It's fantastic!! Join Facebook groups on mthfr and ask questions and we shall help you. It's the only way to do it. Very simple too.
what's the facebook group called?
Yes I have had the MTHFR testing done by a functional doctor here in United States. He immediately recommended methylated B vitamins which have helped tremendously. The thing I noticed most is an increase in energy and a decrease in anxiety. The most noticeable decrease in anxiety I don’t know how to over emphasize it - it’s wonderful! I think it probably has to do with the folate - I was probably doing more harm than good taking the non-methylated folate - again having two copies of the MTHFR gene showing orange.
There’s a book out that I recommend often the title of the book: Dirty Gene’s by Dr Ben Lynch. He talks about all sorts of different genetic, let’s not call them defects, but differences - and how they can affect the thyroid and all sorts of other kinds of, what many doctors call “borderline” diseases anyway here in the US. And yes, here in the US they do try to give you tranquilizers and antidepressants for those diseases rather than treat them.
This same doctor did test for vitamin D deficiencies which showed up as severe. (Insurance refused to pay for that test as it was not standard treatment for Hashimoto’s so they say) And Yes, B vitamin showed up as low.
I’ve also learned to treat the gut as I have Hashimoto’s and so I take a garlic ginger supplement that’s wonderful. Also take digestive enzymes and proteolytic enzyme‘s and a mineral supplement. Along with the NDT I hardly know I have the disease except as I get older I realize I can’t afford to be without any of the many vitamins minerals and hormones that make me feel good. (Selenium, magnesium, etc. indispensable!).
Of course I was taking all of these before I had the MTHFR testing - Except for the methylated B vitamins. The only difference now is I know why and what I must do thanks to the genetic testing. The funny part is I didn’t even want the genetic testing the Doctor - a real healer, he had it done for me and I even protested a little bit because of the cost and whether the insurance would pay for it or not. He told me don’t worry about it. To this day I don’t know what the insurance paid or if he paid. I didn’t realize, at the time, how ungrateful that sounded!
Book by Dr. Lynch, really explains why those of us with the genetic differences not only in the MTHFR but other genetic differences as well - how we really can’t afford to do anything but eat clean or we get the gut imbalances and we pay the price. Other things also cause the gut to become unbalanced as has been discussed many times on the site.
It’s really good to know this genetic information when you’re fighting a disease such as Hashimoto’s or Graves. It’s such a pity that many of us just can’t afford to have it done.
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