Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 Maureen My RE ordered the tests for me. I have been ttc for the past 4 yrs. and finally did in Jan but m/c in March. So I begged to be tested for thrombophilias b/c normally they won't test unless you m/c 3xs. 1x was enough for me so I pleaded with my RE to do the testing. I went to see a hematologist that speacializes in blood clotting disorders and she put me on Folgard. There is a prescription strength and an over the counter one. I am currently on the over the counter pill. It contains 800mcg folic acid, 10mg b6 and 115 mcg b12, plus I take a prenatal vitamin. As far as homocysteine levels go minw was 10.2 which was within the normal reference range but I went to see a cardiologist and he would like it down below 9. I just had it re-tested today. I will let you know what the results are when I get them. The cardiologist told me it would take 3-6 months to lower my level so I am anxious to see where I am at. I've only been on folgard since end of May but am trying to decide whether I will go through another fertility procedure based on these results. Hematologist felt it was ok but I am not so sure this is the case. I don't know why I am taking the baby asprin but the hematologist told me too so I am. I was also borderline for Protein S which is another blood clotting disorder. As far as the heparin goes the hematologist didn't feel it was necessary but said she would allow it if I wanted to use it. I have read that a lot of other women with MTHFR homozygous use it. I don't remember are you homozygous or heterozygous. I do think if we get pg we will have to see a specalist that deals with blood clotting disorders. -- In VulvarDisorders , " momiller21 " <momiller21@y...> wrote: > > You mentioned adding heparin? Would your doctor want you to > consider this just based on the MTHFR results or do you have > anything else going on now? Did you see an RE or did your regular > OBGYN order these tests? An RE ordered them for me, and my regular > OBGYN doesn't really know about this, so I was wondering if when we > get pregnant again, will we have to be under the care of a > specialist as well? > > Sorry for all the questions - thanks for any answers! > > Maureen > > > > > > > > > > > > > Hey Candi, > > > > > > > > I haven't tried to get pregnant yet. I have decided that I am > > > going > > > > to use probiotics during pregnancy though to keep the yeast > > under > > > > control (hopefully it will work). I am going through some > other > > > > issues right now - got some blood testing done and am now > going > > > over > > > > the results with the doctors. Apparently I have some things > > that > > > > could cause blood clotting during pregnancy (hence > > miscarriages). > > > > Therefore, I am trying to get answers regarding taking baby > > > aspirin, > > > > etc. I have two genetic mutuations for MTHFR, and have some > > > > positive results on the antiphospholipid antibody panel. I > have > > to > > > > take extra folic acid and B Complex to keep my homocysteine > > levels > > > > low. I am waiting to hear from the RE now about the > > > > antiphospholipid results. I am hoping to start trying to get > > > > pregnant in July. As for the VVS, I have decided not to do > > > anything > > > > right now. I am alternating between taking three lac and > > taking > > > > the Custom Probiotics. I have added more carbs into my diet > > > because > > > > I was wasting away, and decided that that cannot be good for a > > > > pregnancy. The yeast flare went away after I used > ketoconazole > > > > topically for a week and three lac again. Are you still using > > > three > > > > lac or have you stopped it? > > > > > > > > I hope you continue to do well. > > > > > > > > Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 Hi , Thanks for the response.... I also begged an RE to test me, as I also have celiac disease and didn't want to go through another miscarriage if I could do something to prevent it (like take baby aspirin, heparin). I am not sure if the MTHFR results were homozygous or heterozygous. I have them - it just mentions the genetic mutations. It states that one copy of the C677T mutation and one copy of the A1298C were identified. Your results actually state if it is homo or hetero? Hmmm.... AS far as other testing - I had Antinuclear Antibody Panel, Antiphospholipid Antibody Panel, Factor V Leiden, antilupus anticoagulant antibody, and PTT. I didn't have Protein S or Protein C testing done. I wish I had, because then I would have had basically everything. I don't know my homocysteine level - i need to get those results! The RE just left me a message that it was normal. Why did you see a hematologist? Maybe I will do this and see if he/she can order the Protein S and Protein C tests and ask more questions. Did you see one after your blood results? Also why did you see a cardiologist too? What is the brand of Folgard that you are taking? Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 Maureen This is so unbelieveable I don't have celiac but was tested for it after the m/c b/c I have graves disease and endocrinologist thought I possibly could have it and that was why I m/c. My results actually say homozygous MTHFR. I saw a hematologist b/c that is who my RE sent me to to interpret the test results since they are blood clotting disorders. I saw a cardiologist on my own b/c homozygous MTHFR and elevated homocysteine levels are associated with a greater risk for strokes and puylmonary embolisms. There is no brand for Folgard that is the name of the vitamin. You can go to your local pharmacy and ask them if they carry Folgard. I don't know where you live but CVS and Rite both had it. - In VulvarDisorders , " momiller21 " <momiller21@y...> wrote: > > Hi , > > Thanks for the response.... I also begged an RE to test me, as I > also have celiac disease and didn't want to go through another > miscarriage if I could do something to prevent it (like take baby > aspirin, heparin). I am not sure if the MTHFR results were > homozygous or heterozygous. I have them - it just mentions the > genetic mutations. It states that one copy of the C677T mutation > and one copy of the A1298C were identified. Your results actually > state if it is homo or hetero? Hmmm.... > > AS far as other testing - I had Antinuclear Antibody Panel, > Antiphospholipid Antibody Panel, Factor V Leiden, antilupus > anticoagulant antibody, and PTT. I didn't have Protein S or Protein > C testing done. I wish I had, because then I would have had > basically everything. > > I don't know my homocysteine level - i need to get those results! > The RE just left me a message that it was normal. > > Why did you see a hematologist? Maybe I will do this and see if > he/she can order the Protein S and Protein C tests and ask more > questions. Did you see one after your blood results? Also why did > you see a cardiologist too? > > What is the brand of Folgard that you are taking? > > Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 is there a difference (different plan of action, severity, etc.) between the hetero and homo MTHFR? I wonder why my report doesn't indicate which one it is.... I got tested for celiac after my miscarriage last year. I have been gluten free since January and my stomach issues are all better now. I still have the VVS though and since the beginning of the year I have been dealing with yeast issues on and off. It seems like a lot of us can never get a break! I am now focused on the clotting problems, since I REALLY want to get pregnant again ASAP! Hopefully my RE will get back to me soon with some answers. I may ask for the Protein C and Protein S test and see a hematologist. Ugh.... Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 Maureen I believe the homozygous form is more severe although i am not 100% sure. You may want to speak to your doc about it. -- In VulvarDisorders , " momiller21 " <momiller21@y...> wrote: > > > > is there a difference (different plan of action, severity, etc.) > between the hetero and homo MTHFR? I wonder why my report doesn't > indicate which one it is.... > > I got tested for celiac after my miscarriage last year. I have been > gluten free since January and my stomach issues are all better now. > I still have the VVS though and since the beginning of the year I > have been dealing with yeast issues on and off. It seems like a lot > of us can never get a break! I am now focused on the clotting > problems, since I REALLY want to get pregnant again ASAP! Hopefully > my RE will get back to me soon with some answers. I may ask for the > Protein C and Protein S test and see a hematologist. Ugh.... > > Maureen Quote Link to comment Share on other sites More sharing options...
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