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Discussion Starter · #1 ·
Has anyone had experience of either of these?  I have been diagnosed with MTHFR blood disorder after 2 miscarriages I am reluctant to try again without proper knowledge/discussion from an expert, my trouble is that the fertility consultant knows about fertility and my haematologist knows only about blood, I need a consultant who can deal with both problems and my GP has offered to refer me to either of these places, but I wondered if anyone else here has any experience or indeed has MTHFR also and can offer any guidance?

Many thanks

Minnie
 

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Hi Minnie,

I cannot offer any advice myself, but I know that there is a section on clinic reviews on here, you may find the info you are looking for there.

Emma.
 

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I have cycled at the Bridge and had immune issues - wasn't tested for MTHFR but NK etc and I had Mr ******* look after that side of things and the Bridge the IVF, but in the end moved to ARGC who do the lot- what about the Lister?
L x
 

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I am homozygous for MTHFR. It was diagnosed after four miscarriages (3 with own eggs, 1 with DE) via the late Dr. Beer's US reproductive immunology clinic. You can become a patient of the clinic from the UK and they will consult with you and order the relevant testing and prescribe appropriate treatment and monitoring via the UK should you wish to go down this route. You can do a phone consult for more info.

http://repro-med.net/

In my experience, haematologists may have very little experience of recurrent miscarriage and fertility issues, so although I think it is a good idea to consult one, I would also consult with a miscarriage specialist who can work in conjunction with a haematologist for best treatment. You are much better off either finding a doctor who is sympathetic to reproductive immunology issues or a clinic who will work with you on this.

In my experience neither the Bridge nor Kings are experienced in this area nor do they have great ivf results IMO.

In my experience the standard treatment for MTHFR is clexane started day 6 of ttc cycle plus 5mg folic acid, 50mg B6 and 1mg b12 started preferably a couple of months before you cycle. I would look firstly at the ARGC who are the most successful clinic in the UK and will also treat MTHFR I believe coupled perhaps with the Lister.

The other person who is excellent is George Ndukwe at CARE Notts. (although I think you have to be a patient there). CARE Notts is another excellent clinic for IVF and has good results plus will treat immune and recurrent miscarriage issues.

Here is some more information on testing and immune issues which may be of help.

http://www.fertilityfriends.co.uk/forum/index.php?topic=80433.0

http://www.fertilityfriends.co.uk/forum/index.php?topic=82741.0

http://www.fertilityfriends.co.uk/forum/index.php?topic=100799.0;topicseen

I know how hard it is to find answers to this, but from several years of experience with MTHFR as a sufferer and seeing many women miscarry - I truly believe that the treatment necessary is Clexane before ET coupled with the equivalent of Folgard (US supplement) which is 5mg folic acid, 50mgB6 and 1mg B12.

MTHFR is a genetic mutation which means your body is unable to absorb b vits which can lead to neural tube defects and miscarriage. It can also lead to increased blood clotting on a placental level (hence need for anticoagulants) and again lead to miscarriage.

Some more info. here.

http://repro-med.net/papers/thromb.php

Best of luck,

Daisy
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Minnie

I can't comment on the Bridge or Kings but I do know that the RMC at St Mary's has experience of MTHFR mutation in pregnancy.  I also know people with the mutation who have had ante-natal care at Queen Charlotte's and had the treatment DaisyG describes.  I know of another who had IVF at the Hammersmith with the same regimen.  MTHFR mutation and its treatment is not nearly as far out on the edges as for eg NK cells etc as far as UK OBs and fertility docs are concerned so you will not neccessarily be confined to ARGC/Care but it is definitely worth ringing round before a referral to ask what their protocols are for MTHFR.

Best wishes
Betty
 

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Good point Betty,

Forgot to mention the RMC at St. Mary's which is a bit amiss seeing as I was under their care!!  Would agree with what Betty says...

Reason I singled out ARGC/Care/Lister et al was really for their ivf success rates mainly rather than the MTHFR treatment although they may be more knowledgeable or sympathetic perhaps.

Best,

Daisy
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Hi Minnie,
So sorry to hear about your miscarriages ^hugme^.
I don't have immune issues myself so can't comment on their experience in this area, but I can feedback that personally I was treated at KCH back in 2006 while having IUI treatments and being on clomid and basically got referred there by my GP at a time when I knew far less about fertility issues than I do now. While there may be others happy with this clinic, I have since been treated at two other fertility units for IVF and can only say that unless they have pulled their socks up at KCH I don't recommend them at all - I found the reception staff there very unhelpful, double booking appointments for example so I was sent home after taking time off to see the doctor and on another time one receptionist trying to tell me that it would be OK to book me in for a hycosy test AFTER I had ovulated and making me feel like a very over anxious person when I insisted that she check this with the doctor - lets just say they had me in tears on a number of occasions for their unsympathetic attitude towards their patients. The doctors and nursing staff seemed OK but compared to my experience since I do not think that things such as my blood test results were explained properly to me, and also the hospital is quite inflexible and also does not open on the weekend compared to many others, which can be an issue if you are having any treatment done in your natural cycle such as IUI's and you are ovulating on the weekend.
Overall I have had a far better experience at the next two hospitals I have been treated at (I now live out of London so can't give any feedback on the other clinics in your area) but while it can be less stressful going for scans etc if you are having treatment near where you live/work, I think this is the only benefit and would fully recommend looking into the success rates for patients in your circumstances and patient feedback from other clinics in London before you make a decision.
Hope this helps,
Rachel x

Just need to add that the opinions expressed on this thread are personal opinions and not ff opinions sorry boring i know but just have to say it
 

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Discussion Starter · #8 ·
Thanks to Daisy, Betty and Rachel.

Sorry to hear you had such a rough time Rachel, but I think I will definitely be putting out feelers for the Lister.  I have tried initiating contact with Kings and the Bridge but have had no response yet and I think it is probably optimistic without a referral letter, which I am sure they take more seriously, even though my GP is happy to refer me to either one.

I have also since found out (last week) that I am seriously anaemic (my GP said I am one step away from needing a transfusion), and I wonder if some, if not all, the cause of my m/c's is down to this.  Again, its something else I need to be asking questions about.

Thanks again for all your responses, they are much appreciated.

Minnie
 
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