Need some more help/advice/info

[Avamae'smom]

My newest round of bloodwork came back revealing Hyperhomocystinemia. I am doing a fsting test tomorrow to determine actual homocystine levels. All I understand at this point is:
1.

[Avamae'smom]

1. It is an inherited form of thrombophilia (increased risk for clotting and vascular disease- definitely would explain my Ava's Death at 17 weeks)
2. I need to increase my folic acid to 1600 mg daily now
3. I will require baby aspirin and lovenox if I get pregnant.

Does anyone have any more info?? The genetic BB really is sparse. Anyone experiencing this also??

Thanks!!

Wendy

[LeslieT]

Yes, I tested with slightly elevated levels for homocysteine after I had miscarriages. Out of all the health problems we might encounter during our life, I look at this as not that bad. Homocysteine is an amino acid that, if your body builds up too high and goes untreated, puts you at a higher likelihood of clotting issues, which can lead to miscarriages, stroke, heart attacks, thrombofilia issues, etc. But it is also easily treated. You have to take supplements of folic acid/vitamin B6/vitamin B12 every day for life, and be monitored occasionally to make sure the supplement level is good, but it's very effective at counteracting the homocysteine build-up levels. Basically just a vitamin supplement every day. Much better than other issues that can require shots or other things very day for life.

I'm currently expecting and they found out during a battery of clotting tests early in this pregnancy that I had the homocysteine issue. Since then I've been on a Folgard supplement (combines the needed extra folic acid/vitB6/vitB12 during pregnancy into one pill) every day in addition to the prenatal vitamin, as well as 1 baby aspirin every day. So far everything's fine...am currently at 26 weeks and my updated fasting homocysteine test showed it's down to 4.1 (needs to be below 10 to be in normal ranges). That means the Fogard & baby aspirin supplements are working great to counteract my elevated homocysteine levels.

I am not on heparin due to the homocysteine issue...maybe because the levels were just slightly elevated? They typically also do a MTHFR test if you come back positive for elevated homocysteine levels, since they must be somewhat related...did they do an MTHFR test as well that you came back positive for? I thought heparin/lovenex was for other clotting issues (APA, ANA, Lupus Anticoagulant, MTHFR) more so than homocysteine. Or maybe they give you the heparin/lovenex if your homocysteine levels are higher, not sure. Other ladies out there, do you know? I was on heparin early on in this pregnancy for also testing slightly positive for the Lupus Anticoagulant test, but after repeated tests the results were marginal and back-&-forth...sometimes fine, sometimes slightly elevated...plus I had 2 bleeding episodes and subchorionic hemorhages on the heparin in this pregnancy, so they took me back off. Lovenex causes less bleeding issues during pregnancy than regular heparin, but they decided to stop the heparin/lovenex altogether since the Folgard and baby aspirin had all my tests coming back normal, and the bleeding was a scary situation.

Long-winded way of saying that the treatment for homocysteine issues is easy and very manageable, particularly if you don't need heparin/lovenex, so please don't be scared. Just know it's something you need to look at as a life-long situation, not just for pregnancy. You need to be on the folic acid, vitamin B6 & vitamin B12 supplements starting now and make sure to have it monitored periodically to ensure you're taking the right supplement levels to counteract the homocysteine build-up. I look at it this way...how many older folks have had strokes, heart attacks, thrombofilia, etc. that could have been easily prevented by knowing this info? A significant percentage probably had this issue or other clotting ones that they never knew about. So we're lucky we found out now and can do something about it, to prevent health issues later!

[LeslieT]

Meant to add, this is an email I sent to my parents about the homocysteine issue they discovered with me, so that my parents knew to get tested too. If you have homocysteine issues, it may mean that one or both of your parents have an homocysteine issue too, and they're at the age much more likely to have stroke & heart attack issues than we are presently. So they need to know quickly if they had the issue as well and start their supplements! So do any siblings you have. MAKE SURE THEY'RE ALL TESTED AS WELL!! With you coming back positive, that should be enough for insurance to pay for them to have the test too. If one of your parents comes back positive, they need to urge their parents if living plus their siblings to get tested too.

Here's the email I sent, explaining the issue and with some website links to explain it in more detail...

________________________________________


Mom & Dad, here's the info you needed:

Due to repeat miscarriages, I was tested by our infertility doctor for clotting issues. One of the tests that came back positive was a homocysteine test. Homocysteine is an amino acid that your body produces. In some people such as me, the body produces more than it needs and the build-up can cause clotting problems which can lead to artery hardening/clogging, heart attacks and stroke, particularly as you get older. In order to break down the higher levels of this amino acid, you can take supplements of vitaminB6, vitamin B12 and folic acid to counteract the homocysteine build-up and bring it down to normal levels. You take the supplements every day for life to help prevent homocysteine build-up and clotting problems. There's additional medications you take as well if these 3 don't bring your homocysteine levels down enough. You also need to be retested occasionally to make sure the supplements are bringing your homocysteine levels down to the appropriate levels, and adjust the medication as needed if it's not. My follow-up test is in January to see if the supplements I've been taking are working. They should since my levels were just slightly elevated.

This homocysteine problem can be inherited or uninherited, but is most likely inherited from at least one parent. Since it's a simple blood test to find out if you have the problem, and it going undetected can cause big problems as you age, it's good for you both to have the blood test since I tested positive. If one of you tests positive, then your immediate relatives should also have the test (Mama Pern, Papoo, Uncle Charles if Daddy tests positive...Joanna if Mother tests positive).

Here's some links to some sites with info about homocysteine:

http://familydoctor.org/249.xml

http://www.americanheart.org/present...dentifier=4677

http://www.medicinenet.com/homocysteine/article.htm

http://www.quackwatch.org/03HealthPr...ocysteine.html

http://www.lef.org/protocols/prtcl-122.shtml


One cause of elevated homocysteine levels is a mutation in the MTHFR gene, which is an inherited mutation. I'm not sure exactly the detailed info on MTHFR, other than that if you come back positive for this, you also have to have heparin (blood thinner) shots during pregnancy to counteract clotting in addition to the vitaminB/folic acid supplements to help prevent miscarriage. I came back negative for this test.

The other test I've come back positive for twice, other than the homocysteine test, was the Lupus Anticoagulant test. The levels were slightly elevated, not much but because of the miscarriages they had me take heparin shots each day early in this pregnancy just to be sure. I've taken the LA test 5 times...2 times it came back slightly elevated, 3 times it came back fine. The heparin definitely made my blood thin and caused some bleeding/subchorionic hemhorrage problems during this pregnancy, so it's likely if I do have a problem on this end it's not enough to require heparin during pregnancy. Two of the 3 times it came back normal, I was taking 1 baby aspirin a day at the time which is a slight blood thinner. So the baby aspirin likely thinned my blood enough to counteract any problem the Lupus Anticoagulant test was picking up. So I'll likely be on a baby aspirin per day for life as well.

In addition to the homocysteine test, Lupus Anticoagulant test and MTHFR test, they ran a battery of other clotting tests (such as APA, ANA and others I'm not sure the names of), any that could be causing miscarriages during pregnancy. They all came back negative 2-3 times.

[Josie1021]

I have a thrombophilia caused by the Factor V Leiden gene mutation. I have had 4 losses, 3 miscarriages, the most recent at 12.5 weeks.

If you have not already been tested get them to check your Activated Protein C resistance - this will indicate the likelihood of you having the Factor V Leiden mutation.

My RE has also put me on 5mg folic acid while we wait for tests for the MTHFR mutation. Even without, he believes the extra folic acid will reduce my chances of clotting by lowering the homocysteine levels. When doing IVF I will also take low dose aspirin and probably a form of heparin daily.

Good luck

Josie