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: "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".
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 swear 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 that 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 <Venous sound is faint and slow to return to deep respirations; It may be related to old thrombolebitis in left calf area> (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.
I don't know much about this.....I know hardly anything because this isn't my area. Blood clotting problems is.....but I've done a search on Homozygous and I found this:
In a living organism, having two identical alleles for a given trait. Individuals homozygous for a trait always breed true; that is, they produce offspring that resemble them in appearance when bred with a genetically similar individual; inbred varieties or species are homozygous for almost all traits. Recessive alleles are only expressed in the homozygous condition. Heterozygous organisms have two different alleles for a given trait.
Postivie for Homozygous A1298C is associated with decreased Enzyme activity.
Sorry I couldn't help you more but I hope someone else can.
Hi Kellie2, I too don't have much to offer. I can explain what your genetic result is. It means that they looked for 2 mutations (C677T and A1298C) on the mthfr gene. They found the A1298C mutation, but no C677T mutation. In relation to the A1298C mutation, our genes are all in pairs - we get one gene from our mother and one from our father. If you get one defective gene in the pair (ie one from EITHER your mother or father), you are said to be heterozygous. If you get 2 defective genes (ie one from BOTH your mother and father) you are said to be homozygous. You've got BOTH with the A1298C mutation. Having said that, I googled this and found that the A1298C mutation ALONE does not cause too much homocysteine, you need to have the C677T mutation as well. But that doesn't really help you, because you have had a thrombotic event - we are not really talking about your homocysteine levels (were they high when you had the clot?). Did the doctors test you for other things that can cause clotting, such as factor V leiden, Protein C resistance and that type of thing? Did you have platelet function tests? If there is nothing else going on, I'd take the doctor's advice and go off the coumadin. But it is up to you, of course. If there are no adverse effects from long-term use and you (obviously) tolerate it well, you can just continue on if it alleviates the worry of further events. (BTW, my understanding is that, unless there is a clotting disorder requiring long-term anticoagulation, they usually only give you 6 months after an embolism before stopping the anticoagulation.....I could be wrong about that)
Thank-you skippy, you are the first person to actually explain this to me in a way I understand. So according to what you found, I inherited a defect from both parents? I never knew that.
I looked through the lab results I have here from 2 years ago to answer your question of what all they checked me for, and yes they checked me for several other blood disorders, which all came back negative. Is Protein C resistance the same as protein C deficiency? I was only checked for that once years ago, and as I mentioned, I believe I was still on the coumadin when they did the test and if so, it will automatically give a low reading meaning a positive result, so because of this, my doctor (actually all my doctors) think I probably do not have this, or at the very least, should go off the coumadin long enough to be retested. Now, I did find another test here which I don't understand at all, and searching through this site doesn't come up with anything. It's on a page with the words ANTI CARDIOLIPIN ANTIBODY at the top. Under that there are 3 sets of abbreviations with a reading next to each one, and they are:
ACL IgG - ref. range 0-23, mine is less than 23 (normal)
ACL IgM - range 0-11, mine is less than 11 (again normal)
ACL IgA - range 0-22, mine is under the 'abnormal' column at 58, which says is 'moderate positive'
Do you or anyone else on here know what this high number means? When I read through some of the posts on here, alot of people use sets of letters in regard to this disorder but none are like mine, so I can't find what mine means. I see a notation under these numbers saying something about 'antiphospholipid antibody symdrome', but don't understand everything that's written there. Maybe someone on here can help?
Also, I don't know if they did a platelet function test on me, I have a sheet here with a column of abbreviations and numbers next to each one but don't know if one of those abbreviations is this particular test or not. One says 'PLTS' - would this be it?
As far as being on coumadin after a clot, you're correct, the standard length of time to be on it afterwards is 6-12 months.....the doctor they gave me while in the hospital was not a hemotologist, he was just an internist (this was back in 1984 and they didn't know a whole lot about this kind of thing back then) and he never wanted to take me off of it, every time I would ask, he'd kind of hem and haw and said he would rather leave me on it for awhile longer. I don't know if he was really that worried about me, or didn't really know what he was doing, but after two years I demanded he take me off, so he did. That was that 4-month period of time where my legs felt so heavy so I went back on it. And now I just plain don't know what to do.
Ok, I don't know anything about your actual findings. I googled, and it says the antibody test you tested mildly positive for is the lupus anticoagulant. It says you can test positive if you have an infection so yes, it would appear that it can just "go away".
Yes, my understanding is that you have the mutation from both parents. My understanding is that if you are homozygous, your children will have at least one gene carrying the mutation (ie be heterozygous at least) because you've only got dodgy ones to pass on. From googling, this mutation is said to be common (30% population) and doesn't seem to cause problems unless the other is there, so it doesn't seem particulars worrisome. That is why I wondered whether other things were found which required the anti-coagulation.
PLTS could be it - it would be on a page with Hgb, MCV stuff like that. Platelet function tests are other tests where they test how your platelets work (eg whether they clump more than they should). It may not have been necessary in your case. As I understand it, Protein C resistance is different from deficiency, but it is possible that you need to have a deficiency before they test it. I don't know, I just know there is a whole swag of tests they do where clotting is a problem. Did they test you for factor V leiden?
What I'd suggest you do is find a specialist in clotting disorders at one of the big teaching hospitals. Search the web for somebody who has published on your mutation, or on anti-coagulation, or clotting disorders. Get all of your results together and get an opinion from a top banana. This stuff isn't something you can figure out with the (well-meaning, but probably useless, other than for support) assistance of other board posters. You need to hear from somebody who not only knows, but knows more than everybody else. Time for a second opinion, I reckon.
i have antiphospholipid antibodies or lupus anticoagulant. i have tested positive for it for about 6 years now.
my hemotologist told me once you test positive for this and have an event you should always be on anticoagulants. right now i take coumadin and plavix, but the norm is coumadin.
i also had a homocystein level of 36. took 4 years to get it normal. my blood guy wanted it below 10. i take 5mg of folic acid, 100 b6 a day. i used to take 1000mg b12 by pill a day but switched to injections every other week...that worked finally and i have a normal level.
homocysteine can cause premature atherlosclerosis (as it did me). this isnt a good thing..LOL.
i have had 7 strokes because of all this stuff. in my humble opinion...STAY ON THE COUMADIN.
p.s. yes you can test neg for lupus anticolulant and then positive again. big chance to take when you have already had a clotting event.
Thank-you Janet, you've been very helpful. When I had the lung clots, this was back in 1984 before they knew alot about these disorders, and I don't believe anyone checked me for anything at all back then. They believed the clots were from my birth control pills because of the high estrogen content they had back then, which was linked to a high risk of clots.
I did some online research and found out a little more about my numbers from the anticardiolipin test. Seems it's the first two that are cause for concern - IgG and IgM. The third one, IgA, which shows mine as being high, is said to have little to no significance, and there is a St. Luke's hospital that has even removed it from their test and no longer even check for it. In my report, it says when this test is negative, like mine below is, they suggest also checking for lupus anticoagulant to confirm the negative result - in other words, the test can be negative due to infection or something else, so they double-check it with the lupus test to see if that also comes out negative. If it comes out positive, then the ones below should be redone. What they're actually looking for is a double negative on both. I have had a negative on the ones below, this last one for lupus was negative, and I am going to get a copy of the second one that was done and see what that one says.
ACL IgG - ref. range 0-23, mine is less than 23 (normal)
ACL IgM - range 0-11, mine is less than 11 (again normal)
ACL IgA - range 0-22, mine is at 58, which says is 'moderate positive'
Now what has me confused is, I know they link this particular disorder to a high incidence of miscarriages - my mother had 8 (never a problem with clots though). This of course raised some eyebrows among my doctors but she's no longer with us so she can't be checked. I did read that this is genetic and several people in one family can have it, so we have assumed that my mother very possibly had this and if so, may have passed it on to me (does this sound right?) but yet I don't test positive for it.
The one thing that has always bothered me is, when I was first hospitalized with the clots in my left lung in 1984, treatment back then was two weeks of bedrest while on an IV blood thinner, and after two weeks you would go home. After my two weeks, they sent me for a lung scan to make sure the clots were gone before they discharged me, and indeed they were - but I now had clusters of them in my other lung. In other words, I got more clots even while on the blood thinner. Nobody knew why. After two more weeks those were gone and I've been fine ever since. But....it has always bothered me not knowing why I would have gotten more clots while on a blood thinner. None of my doctors seem to find this very unusual, but I have always questioned it.
Again, I thank you for your help, and anyone else who would like to offer opinions are more than welcome to do so.
well blood thinners does not eliminate the risk for clots, it just lowers the risk for clots. blood thinners also will not disolve clots, it will stop them from getting bigger though.
life on coumadin takes a little to get used to till your levels settle down and you know what foods have alot of vitamin k in it (which counteracts coumadin), but after awhile it settles and you feel like you just have to pop a pill and get a blood test every two weeks.
in my opinion it is not worth the risk stopping the coumadin and risk another event because it may be a stroke. strokes are not fun and take soooo much work to come back.
sounds like your mom definitly had aps.
look up hughs syndrom on the net to find more info on this stuff.
i agree with the other person.....cant hurt to have a consult with a hemotologist. i say that living in canada where it is easy to get a consult as we have nothing like an hmo calling the shots.
I already go to a hemotologist, he's the one doing this testing for me. I also have heard that clots never go away, but obviously they do in the lungs because I don't have any there. The scan I had back when they discovered them showed them in one lung, two weeks later they were gone but I had more in my other lung; two weeks after that, those were gone too. So within a two-week time period I showed clots in both lungs, which were both clear after a month's time.
Where else would they go if they didn't dissolve??
maybe they moved up along the line....just like lung clots usually start in the leg. but perhaps they werent clots at all?...is that possible that they were something else and just looked like clots? i honestly dont know what happens to the little suckers i just know that blood thinners wont disolve them...LOL
Actually, I did find doing some research that yes they do dissolve in the lungs....and I guess it's possible that what they were seeing wasn't clots as you suggest, maybe scarring from past pneumonia? They see the scarring on chest x-rays so I would imagine that maybe at that time it could have been mistaken for clots because they were looking so hard for them. Interesting.