Sunday, October 24, 2010

Adding a Hematologist to the mix

I heard from my RE a couple of days ago.  He called at 6:30pm still working away at the office.  My OB’s office had faxed him my results and he wanted to discuss them with of the only times I have been called from that office without me initiating the contact! He told me that he does not believe this MTHFR mutation is the cause of my miscarriages.  Through our own MTHFR research (including tons of advice from you guys – thanks!) and after talking to him, we have learned that basically this gene mutation can cause problems with your body metabolizing folic acid, which is obviously very important during pregnancy.  It can also cause blood clotting, also not a good thing while pregnant.  Some doctors have just began testing for this mutation while other doctors still do not test for it.  Research is still being conducted and some sources say that the mutation definitely causes repeat miscarriages, other sources say there is not a direct connection.  The problem is is that no one knows…and that is so frustrating!  If we found something that was definitely the cause, that had a proven “treatment” it would make this a teeny bit easier.  But the not knowing is so annoying.  If we “treat” this it may or may not solve anything.  Grrr.

Back to the conversation I had with the RE. He said that he thinks the best plan of action will be to begin taking a new prenatal vitamin that contains the active form of folic acid, so that my body will not have to metabolize it.  The vitamin is called Neevo and on the bottle it is described as “medical food”.  I thought that was quite funny for some reason…he also said that I should begin taking a baby aspirin a day and possibly go on heparin if and when we get pregnant again to prevent blood clotting.  Another recommendation was to not see the genetics counselor but instead to see a hematologist in Mobile who has done research on this gene mutation.  (I haven’t cancelled that appointment yet though in case we decide to still see the genetics counselor after talking to the hematologist.)  I like that idea…we will be sticking to 2 cities and she specializes in it!  After many a phone calls to my OB and RE, we were able to get an appointment set up with the hematologist for the week after next!  MUCH sooner than the genetics counselor!  We will also see the RE on the same day after we have met with the hematologist to discuss our plan of action. 

So, over all I guess I am feeling a little bit better about it all.  Still not excited :) but glad we are getting some answers and will be talking to someone who knows about the MTHFR gene mutation soon.  I just have to trust God that He’s got this under control!!!!


  1. Im glad you are lining up some Dr's that hopefully will know how to tx you:) Like many things when it comes to RPL all Dr's will say any tx is not proven...Well that is because how many women who know they have issues with RPL are willing to be the placebo group...Not many that I know therefore there is not a ton of research but in my opnion when you find something even if it may be minor still need to go full force and tx it:) In my case if I wouldnt have gone full force I would not be where I am today...I am living proof:) Anyways I still think it would be very beneficial to get a RPL panel done that includes NK cells to see what those are when not pregnant and when you are pregnant....because with me the MTHFR was only one piece to the puzzle....and I dont care what other Dr's say about immune tx it is def not hocus pocus it is real and in 5yrs all the RE's will be doing the tx too...its just new now....Just like IVF think of whoever started that Im sure a ton of the Dr's were calling that hocus pocus back then too....Well keep your chin up because it is def alot to swallow...Best Wishes:)

  2. Oh an another question I always loved to ask my RE/OB when I would get yet another genetically normal baby result back after our miscarriages...What caused my miscarriage...Well of course none of them could answer that...

    So if your MTHFR did not cause this loss....and genetics came back fine...Then what did? if they give you well certain percent just dont make it or its just bad luck then they dont know what they are talking about either....because there are reasons for miscarriages just most dont know the cause themselves....just an idea:)

  3. I'm very interested to hear what your hematologist says, please let me know! My OB thought it was the reason (though we've found other reasons since), but my RE didn't believe it was the cause either. I'm with you on that being frustrating with the conflicting ideas and poor amounts of research! Oh, I just wish all of these things would get figured out for all of us!! Praying your appointments go well and grateful they are sooner rather than later!!!

  4. Lisa.... We are definitely in the same both in different continents ; )
    I do have a MTHFR mutation too. It is a heterozygous (sp?)mutation. My geneticist said it was not the cause of my two miscarriages either. I have two really close friends who are hematologists. Both of the are working towards their PhDs, one in Canada and one in Brazil and they agree with the geneticist. My mutation was not the cause of the miscarriages.

    I hope you can find more answers than I did. And my first baby was a little girl too.

  5. are you taking juice plus? it is dried vegetables and fruits in a capsule. i am taking it instead of a prenatal bc the body soaks up the nutrients just like if you were eating food. it has TONS OF folic acid. look at my website and ask your doc about it if you want. my fertility specialist actually tells all his clients to take it.

    ok!! just wanted to let you know! e-mail me if you have any questions!

  6. Hope you guys get some answers soon! Hang in there.