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Blood and Blood Vessel Message Board


Blood and Blood Vessel Board Index


First I want to apologize for the lengthy post but my head is swimming now with so much information that I truly need your help in understanding it. I've been reading quite a few posts on here about different things that pertain to me, and so much of this blood clotting is so confusing, but I think all of you are the best people to come to for opinions and answers, just because you've 'been there done that'. I hope some of you can explain some things to me that I don't understand - most I have either read on here or have been told by my doctor (hemotologist). Hopefully you can address the different issues separately for me so this headache I have right now can start to go away :)

1) Is it true that Lupus Anticoagulant can go away? I read a post on here by someone who said she tested positive at one point but has since tested negative, which meant she no longer had it. Other posts I've read also somewhat support this. My doctor has said that they don't give a diagnosis of this disorder unless there have been three positives for it. I have had three tests done at different times over the last 2 years - the first was positive, the second was inconclusive, the third done last week was negative. My doctor says as of this day, I do not have it because the results don't show it. So is this correct, that this is a condition that can be 'acquired' as some on here have said, and then go away at some point?

2) Also, in this blood work-up I had done a couple of years ago, it shows a gene mutation, and I'm not sure I'm understanding it correctly so would very much like other opinions if others on here are more knowledgeable than me. It states:
[COLOR="Sienna"][I]"Results - negative for C677T and homozygous for A1298C. The Mthfr gene was examined for the C677T mutation, which was found to be absent. This specimen was also examined for the A1298C mutation. Both alleles of the Mfthr gene show the A1298C mutation, indicating that the patient is homozygous for this mutation".[/I][/COLOR]
From what I have been told, and also what I read below these results, is that two mutations have been found, and these together can cause a high homocysteine level, which is what actually can cause a clot to develop, and that high levels can be treated with supplements. Now, from some of the posts I have read on here, alot of you who have this mutation, or have high homocysteine levels, don't even take coumadin or any blood thinner. Is folic acid and supplements the usual treatment for this, and not coumadin? My homocysteine levels have been checked twice, once 2 years ago and again last week, and they were both in a normal range - normal is approximately 6-16, mine were 8.8 and 9. I assume this is an acceptable range to be in?

I should probably explain why I'm asking for help in understanding things. I was hospitalized 22 years ago for lung clots (was on birth control pills at the time). I was put on coumadin and except for one short period of time, have been on it ever since. One doctor through the years did check me for protein C deficiency, which came out positive, but that's questionable now as I believe I was still on coumadin when they did the test, which we now know will give a false positive. I can't [I]swear[/I] I was still on it when they tested me, but neither do I remember being willing to go off of it, either. The doctor I see now doesn't believe I have this deficiency just because there's a good chance the test was not done correctly. Also, because I have never had another clot anywhere in my body or any problems since the first clots 22 years ago, he feels those initial clots were just a direct result of the birth contol pills we took back then and doesn't feel I need to continue coumadin.
We've also discussed this gene mutation and link to homocysteine levels, and again, he doesn't think coumadin is the correct treatment for this, either, especially since I have not had any other clots since 1984. This again brings me to my homocysteine results posted above - are these numbers worrisome for me and need to be even lower, or is it higher numbers than these that warrant treatment? In other words, is a 'normal' range only normal for someone with no problems, or does someone like me need to have it even lower to be safe?

There is nothing I would like more than to be able to stop coumadin, but it's understandable why I would be hesitant to do this - I've been on it all these years and have always felt that [I]that[/I] is why I've not had any problems, that's what coumadin is suppose to do, prevent any more clots, so of course I wouldn't get any more while on a blood thinner. But I read on here many posts from people who continue to have problems even while taking it, and this is probably why most doctors I talk with question if I even need to be on it. In fact, they all pretty much say the same thing that many of you say - that treatment is only warranted if there is an episode or continuing problems.

3) I do want to add that I went off my coumadin one time only, about 2 years after I had first started taking it after the lung clots, and asked my doctor to take me off of it as I thought I had been on it long enough. So he agreed to letting me stop it, which I did for 4 months. Now, I remember my legs feeling heavy and achy during this time, and I also remember I would prop my feet up on a stool at work because it felt better to have them up. I don't really know how to describe it, other than they felt 'sluggish' and heavy (actually, don't remember if it was both legs or just the left). On the report I have here from back then, it says I noticed my left foot swollen off and on during the time I was off coumadin, and the last couple of weeks it was swollen all the time. I went to my doctor and they did a venous ultrasound on my legs and found that the blood wasn't flowing as smoothly as it should in my left leg, and wrote on the report [I]<[COLOR="sienna"]Venous sound is faint and slow to return to deep respirations; It may be related to old thrombolebitis in left calf area>[/COLOR][/I] (which I assume is where the lung clots came from). He didn't seem as worried about it as I was - so how do they know it wasn't a clot in there at the time, does it sound different to them? Of course, the first thing I thought was I had another clot and got scared silly and asked to go back on coumadin, which I've been on ever since. I should tell you though, that my left foot has always been a little 'puffier' than my right, and even on the coumadin there have been times it is noticeably more swollen than my right, which I guess supports their suggestion that it's from the old clot. Does this sound right, or is this how your leg would react after having a clot at some point? Again, I've read posts on here from people who say their veins are damaged from clots and the blood doesn't flow smoothly now and causes them discomfort or achiness, so now I can't help but wonder if that is exactly what they heard in my leg all those years ago and my going back on coumadin was not warranted, or needed. And now I'm just plain scared to go off of it without more information.

Can any of you help me with any of this? Anything you can share will be greatly appreciated more than you know.





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