Welcome to the MTHFR Group Forum!<img src='/RoR/images/blank.png' class='icon_img_ww push_pin_icon'>

Welcome to everyone - new and existing members!  If you are new here, please introduce yourself and tell us a bit about why you are here.  This group was created for anyone who may have received a diagnosis of MTHFR, anyone dealing with MTHFR, or anyone who has lost pregnancies (because of) MTHFR.  This group is also designed to provide awareness for those people who suspect that they might have MTHFR and provide a place for discussion on how to go about obtaining information regarding diagnosis and or treatment.  (NOTE: These discussions are NOT a replacement for medical consultations or evaluations by a medical practitioner.)
Please post any questions, concerns, issues and most importantly (if you wish) tell us about your personal experience with MTHFR.

If you do not wish to post openly on this forum, (If I can help answer a question that you might have) please do not hesitate to send me a message or note directly.  Often times new members visit here because they may have just received a diagnosis or are struggling to get a diagnosis and treatment pertaining to MTHFR and this discovery can sometimes be a stressful/trying time.  If this is your situation, remember many of us have been in your exact situation, and know better than anyone what you are facing.  More importantly, through sharing information many of us have been able to find ways to deal with this genetic mutation and also to find hope in stopping the loss of our pregnancies.

Many of the members here are full of knowledge and have personal experiences with questions that you may have.  Personal experiences are sometimes the best answers to many questions that people have regarding MTHFR.  Please keep in mind, that while we may have extensive knowledge in many areas, members should always seek professional medical advice from their own physician, as it pertains to medical conditions or concerns.

Again, welcome and please enjoy this forum.

Sincerely,
Sandi (Dragon1973)
MedHelp Genetics Community Leader;
Children - Special Needs Community Leader;
Down syndrome Community Leader & Ds Group Forum Founder/Moderator;
MTHFR Group Forum Founder/Moderator

[GinaGi]

i think it best if you add lovenox or heparin as one of the tags ?  Cause when i was searching for a group like this i just typed in lovenox .

[Dragon1973]

Good thought!  I forgot about that!  I will get it added!

Sandi

[jackieinOregon]

Hi,
I just discovered this forum.  While I see it is primarily centered on females of childbearing age, I have not yet found a forum more suitued to my demographic.  I thought I might introduce myself, anyway.  I am female, but no longer childbearing age.  I am 54 years old and compound heterozygous (C677 and 1298) for MTHFR.  I have known this only for one year.  I had been having trouble with superficial vein thromboses about the time my triathelete daughter developed a DVT.  She tested positive for Leiden, then I tested positive for Leiden.  I started connecting the dots with my family history, my thrombophilia and other health problems I have been battling.  So, I pushed my PCP to refer me to a hematologist and got tested for the gamut of clotting factors, at which point the compound MTHFR was discovered.  Soon after, I had to have knee surgery, which is contraindicated with these clotting factors.  But, no clots, thanks to post-op heparin injections (Arixtra).  Then, I had to have a hysterectomy six months later, and again, no clots with Arixtra.  Five months later 11/05/10, out of the blue, I developed a DVT.  ER doc put me on Arixtra and my PCP started me on Coumadin (major bruising with both simultaneously).  Anyhow, I'm now theraputic on Coumadin, but my life is drastically altered.  I used to be a competetive tennis player, but that is now out of the question on Coumadin (and a bad outcome with knee surgery).
Regarding pregnancy, I would like to let other members know that it is possible to have healthy pregnancies with these genetic polymorphisms.  I was blissfully unaware of my genetic problems when I conceived my first baby (accidentally) 28 years ago.  She was born very healthy, no problems with the pregnancy or birth.  Five years later, her brother was born, and no problems except for a calcified placenta unwilling to detach (thought it was due to his being 13 days late, but now I wonder if I clotted prematurely).  No miscarriages.  At any rate, I was younger then, and youth is a very good thing.  I find, now, in my 50s, the clotting factors are dramatically compounded by age and I spend way too much time at doctor's offices.  Folic acid, niacin and Coumadin are now part of my daily routine.  Best of luck to those of you who are pregnant or trying to conceive.  Thanks to Sandi for starting this forum.  We need to be well-informed regarding our health-care needs and options, and sharing info in this way is invaluable.
Jackie

[Dragon1973]

Welcome Jackie!

I can't thank you enough as well for joining the forum.  While I noticed a need for a forum that allowed members with MTHFR to connect who were also seeking help with conception or their pregnancies, it is very important to know the issues surrounding MTHFR for life in general, and after pregnancy.  I feel your information in this area will be invaluable to the members, since I often mention that it isn't only pregnancy that members with MTHFR have to be cognisant of.  I hope that you wont mind if we ever have questions relating to other life issues or hope that you will post often about the issues you have described.  It's wonderful to have all ages and parts of life in this community.

It proves more then ever what I mention often.  Everyone, please do not hesitate to discover and present your health care professional with information surrounding MTHFR.  It may help you later in life, or answer many of the unanswered issues that you might like me have had over the years previous.

In addition to anything I have mentioned, please keep in mind, that while I or others may have extensive knowledge in many areas, you should always seek professional medical advice from your own physician, as it pertains to medical conditions or concerns.

Good luck, and if you have any other questions that I can help you with, please feel free to message me directly.

Sincerely,
Sandi (Dragon1973)
MedHelp Genetics Community Leader;
Children - Special Needs Community Leader;
Down syndrome Community Leader & Ds Group Forum Founder/Moderator;
MTHFR Group Forum Founder/Moderator;
Pregnancy: June 2011 Community Leader

[hausofzeus]

I'm VERY new ... to all of this ... and not as well versed in the venacular ... I am "technically" still in the child bearing zone ... although the END zone, I'm 48.  I have four boys, normal pregnancies, and although one of my children has a mild version of aspergers syndrome I can happily report they are all healthy.  I am 5'2", 110 lbs and up until the "symptoms" presented I had always considered myself extremely fit.  I began having a problem 4 years ago and at the time they thought it to be just severe iron deficiency, allergic reactions to iron variteties, trial and error they "filled my bank account" w/ iv iron and two years later, had to do it again ... then just 9 months later, lo and behold I was "bankrupt again" ... further testing showed deficiencies in iron, b6 b12 and folate.  The hematologist ran a test and diagnosed me with MTHFR (and I apologize I do not know which manifestation it is ... I was angry, the second he said no cure, take folic forever) - I honestly thought he made it up :/ out of frustration of NOT being able to figure out what was causing me to completely deplete everything I needed to function ... and it seemed to be picking up speed with every rotation  so, needless to say I have no recollection of which C677T or A or two of one of ... I don't know, I should probably ask, but I don't see the point, its not like he can "fix" any of it grrr  
I'm confused, if I was born with this ... then why NOW?  I've never had any real problems ... minor bout with hypoglocemia  I also, noticed while perusing the blogs that no one is talking about the progressive cycle of depletion ... and how miserable and exhaustive it is once you bottom out ... cause apparently no amount of folic, b's iron etc are "sticking" they just flush through as fast as I take them (brown pee - I can tell, NOW, when I'm about to crash cause it clears up to normal :/) Anyway, Hi, I'm Teresa ... and I'm tired of being tired and really want my life back  :/

[lisakim77]

Hi Sandi,
I have a question about the MTHFR Single mutation A1298C.
Sadly I am having my third miscarriage. I do have one healthy little boy that is the light of my life. I had 2 miscarriages before my son was born (10/08 and 4/09). I underwent a miscarriage workup in 7/09 with findings of MTHFR single mutation A1298C. Ironically, I was about 6 weeks pregnant when the lab came back so my doc right away put my on folbic twice daily. And I had a fairly uneventful pregnancy, with him being born full-term 3/10. Unfortunately, we moved to a new city after my son was born so I had to find a new doc. The new doc said I didn't need the B6 and B12, just extra folic acid. And I didn't question it, since I had seen my son's heartbeat even before I started on folbic (so I wasn't convinced that it had kept me from having a miscarriage).  Well, now of course, I think folbic is the cure-all and wish I had been started on it with this pregnancy. I guess my question is: Do you have any literature or medical websites you would recommend that I could present to my doc in order to educate him and get a prescription of folbic? (I understand that I could just take large doses of B6 and B12 over-the-counter. But they are not regulated by the FDA like a prescription product is.) I'm not finding much on-line about B6/B12 in MTHFR. Most of what I read is that elevated homocysteine levels are what is treated.

I am totally now convinced that I need the extra B6 and B12. (And I think it's also giving me hope for future pregnancies...)
Any help would be appreciated and I hope to have some more time tomorrow to further check out this website. (I may end up just making an appointment with my old doc and travel back to see him.)
Thanks in advance!