I'm a little nonplussed here right now ... I've been reading up on the MTHFR C677T (homozygous) gene mutation that I apparently have, and wanted to ask Mr Shehata's advice over the treatment plan. Those of us with this mutation apparently have problems metabolising folic acid - with the worst case of this mutation, as mine is, apparently you virtually cannot metabolise folic acid in its synthetic form at all. Here in the UK the standard treatment seems to be high-dose folic acid and low-dose aspirin (it's a thrombophilia-related problem, apparently). However, in the US, medical wisdom is stating it's no use giving synthetic folic acid since our bodies cannot metabolise this into the "methylated" state that it needs to be in for our bodies to use it (that's what normal people without this mutation do), and are saying people with this particular mutation need the methylated version (L-5-MTHF apparently), which is available via supplement form.
Also apparently low-dose aspirin is not felt to be a strong enough blood thinner to combat the blood clotting aspect of this, and in the US Levonox or heparin is prescribed (Levonox is a trade name of enoxaparin, which is low-molecular weight heparin).
Anyway, I wanted to just run this by Mr Shehata and ask him if I should be taking the methylated form of folic acid, and ask about heparin - I believe St Mary's prescribe this to women with this mutation. So I sent what I thought was a really nice email to Mr S's secretary, freely admitting I'm still learning about all this but asking if it would be possible to ask Mr S for his response on this.
I got an answer back basically saying Mr S is too busy to read an email like mine, that I should bring it up at my next appointment with him, and besides which Mr S "usually advises not to look on the websites as it causes complications".
I am, as I say, a little nonplussed by this response. I wasn't querying Mr S's expertise, I actually openly stated he is the expert and not me!, but I've read a LOT of medical sites that state exactly what I'm asking about, and I'd really like to know. It's a potential factor in my miscarriages - commonly causes miscarriages - and I want to make sure I'm actually taking the right stuff, if you know what I mean - or at least to hear why US medical advice, which seems to be light years ahead of us in so many medical things, is wrong in this. The comment that people with this particular mutation shouldn't be treated with synthesised folic acid makes perfect sense to me if the whole problem is our bodies cannot metabolise synthesised folic acid into the body-useable methyldated form - surely?
Not quite sure what to do about this now - is it even worth raising with Mr S when I see him on Monday, if this is the kind of response I'm going to get? 