MTHFR (Methylenetetrahydrofolate reductase) User Group
Newbie Here
About This Group:

This Group was created for anyone wishing to learn, chat or share information relating to MTHFR. Many woman have suffered Miscarriage(s) and have no idea why. For some of us, a genetic mutation called MTHFR is the reason. MTHFR (or 5,10-methylenetetrahydrofolate reductase NADPH) is a genetic mutation that has 24 known variants that affects the ability to absorb Folic Acid and can cause more severe problems in health and also in pregnancy. There is much debate and dispute within the medical community regarding MTHFR and it's relationship to pregnancy loss or Recurrent Pregnancy Loss (RPL). In all the confusion, there are many ideas and treatments along with schools of thought on how to treat or deal with MTHFR.

Founded by Dragon1973 on October 23, 2010
68 members
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Newbie Here

Hello Everyone!
I am very happy to have found this forum.  I have had a lifetime of weird syndromes and disorders.  My husband jokingly refers to my condition as the 2% Syndrome, because it seemed like everytime I was diagnosed with something new the Dr. would say that only 2% (or 5%, or 10%) of the population have it.  I have been telling my husband for years that they have to all be related.  Nobody gets several rare conditions independently.  It just doesn't happen.  But, no Dr. I've seen has ever been able to put the pieces together.  

In 2005, I was diagnosed with Anti-phospholipid Syndrome.  My Doc suspected it because of a previous unexplained miscarriage.  My Dr. put me on aspirin therapy.  However, he didn't know that you shouldn't give asthmatics aspirin.  I ended up in the hospital with only 73% of my oxygen intake making it into my veins.  IF YOU ARE ASTHMATIC, ASPIRIN CAN BE DEADLY.  Okay, moving on.  I ended up moving to another Dr. because my original said that he didn't know enough about it to help me.  I appreciated that.

In 2006, I started fertility treatments.  I have PCOS and do not ovulate regularly.  I started Clomid and did three months before stopping.  It made me crazy.  Seriously.  Anyway, while I was seeing this Dr. he ran another anti-phospholipid panel and I came up clean.  We put the pregnancy in God's hands and moved on.

Nov 2009 - "Honey, aren't you glad we never had kids.  It's just the two of us.  Let's go on a diet and get into shape and start really enjoying life"

Day after Thanksgiving - start Atkins Diet

December 2009 - I get pregnant - haha I jinxed myself.  All those years of crying and being jealous of those mothers who reproduce like rabbits, and I get prego one month after I decide I don't want to anymore.  Go figure.

Jan 10 - I find out I'm pregnant.  Wow.

Jan 11 - I leave work early because I almost faint at work.  I immediately schedule an appt with my Dr.  and she puts me on light activity and I go on short-term disability.

Later in the Spring, my OB retests me for APS and again it turns out negative.  I start really studying up on it.  I find that there is something called Seronegative APS.  You can have it and not test positive for it.  I do this big presentation for my OB and she refers me to a hemotologist (sp?).  I have MS like symptoms, but no MS.  The Blood Doc is very rude and insists that I don't have APS, but since I've paid for the appt., she says that she will run some blood tests.  Some.  They pulled 12 vials of blood.  I think she overtested me out of spite.  I return two weeks later and she is singing a very different tune.  I don't have APS, she says, but I do have Multiple Thrombophilia.  I have MTHFR and Prothrombin gene mutations.  I also have low protein S.  She says that these increase my clotting factors, but otherwise should not impact me.  I have found out since then, that is not true.  

August, I am induced at 37 weeks because of preeclampsia.  I have a very hard time and end up having an emergency c-section.  My Little Man was fine except for a little jaundice and a shortened neck muscle.  I, however, was not.  I ended up spending a total of 10 days in the hospital because of dangerously high blood pressure.  We finally got that under control.  I had a tough recovery, but Little Man is seven months old and very healthy.  He is showing signs of having Livido Reticularis, but Doc says he looks normal.  I am having him tested this weekend for the mutations.  

This week, I finally listed out all the conditions that I have (off the top of my head) to see what are the common denominators.  

Scoliosis
Metabolic Syndrome
PCOS
Multiple Thrombophilia
  MTHFR
  Prothrombin gene mutation
Basilar Migraines
Seronegative Antiphospholip ?
Arthritis
Eczema
Livido Reticularis
Dermatographia
Asthma
Allergies
Back Pain
Sciatica

I started cross-referencing all of these and came up with a common thread.  Homocysteine.  Everyone of these problems can be attributed to high levels of homocysteine.  Then I remembered that MTHFR can cause high levels of homocysteine.  Wow.  I am on fire to learn all I can about this.  I downloaded both "The H Factor" and "Could it be B12?"  I highly recommend both of these books for anyone dealing with this.  

1 Comment
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Wow!  Welcome "TheApril"!!

Thank you for posting your story!  I have to say, I still get "surprised" when I read (other members who have MTHFR) medical lists and specifically yours because I felt like I was reading my own whole personal medical list!!

For example off the top of my head, I too have the following -

Asthma (since childhood)
Allergies (Food, Environmental & Insects)
Back Pain
Sciatica
MTHFR (Two variants) with a propensity for clotting
PCOS
Scoliosis
Arthritis
Degenerative Disk Disease
Eczema
Hypoglycemia
Prolactinoma (pituitary tumour secreting prolactin)

And others that I probably cant think of at this very minute.
I am going to take a look at some of your other medical issues - see if there is a possibility that I could have symptoms of those AND I will definitely be taking a look at the two books you mentioned.  I am a research Junkie!  Also, congratulations on your son!  I'm very happy he's alright despite your arduous delivery & complications.  Will you have him tested at some point for the MTHFR/Protombin & Thrombosis?

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
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