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Anyone With A Clotting Disorder?


sue1234
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I had my genes tested, and found out a couple of genes make me more likely to clot. I have to find the right doctor to address it.

I was curious if anyone has been told they have a tendency to clot? Good thing I never tolerated birth control, as that apparently makes people more prone to clots.

BTW, for those that have their 23andme genetic testing, I am heterozygous for the MTHFR gene and I am heterozygous for the F2 gene (prothrombin) (that is equivalent to rs179963).

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I have factor V Leiden and excess factor 8. I was diagnosed after a pulmonary embolism (pe). A hematologist is the one who diagnosed me but my primary care is the one who manages my care. I have not seen the hematologist since I was diagnosed. The treatment is to put you on blood thinners like warfarin for life, however, I have been told that they will not do this until after you have a clot. Many people go through life with these factors and have no problems but the trick is surviving the problem when you get one. I was lucky because I was familiar with some of the symptoms of a pe. and took myself to the hospital inspite of being told by the doctor I just had a muscle cramp in my calf. My father was not so lucky.

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I have not been diagnosed w a clotting disorder but I suspect I have something like that.

I have trouble anyway w IV insertions. Last week when I had an IV put in it clotted before the nurse could get the drip running. She said that was unusual. This week when I had a pin prick blood test I had to get pricked twice because the first prick clotted before they could get enough blood for the sample.

How is something like this diagnosed? Is it necessay to have a genetic test? Or is there some other lab work I can ask about?

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Kelly, I am not sure on what testing, but I'm thinking just some labwork can let them know if you clot okay or not. From there, they may do a genetic test specifically for the clotting disorder genes.

Over the last couple of years, I've had two separate lab techs randomly ask me if I've ever had clotting labs done. Randomly. I didn't really pay any attention to them, but NOW I can look back and see that they probably know what is abnormal, and I must have looked abnormal when drawing blood.

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I just tested positive for the homozygous mthfr gene. Explains my pregnancy loss and not being able to get pregnant. I am going to see an adult genetist in tuscon in a few weeks, who deals with it. Treatment for it is the active form of folate called methylfolate. The enzyme on this gene can get switched, which means it is not able to process the inactive form of folate or folic acid commonly found in vitamins and added to processed foods. This gene also interfers with the metabolism of some medications that use the same pathway. Hetro isn't as bad as homo, but it also matters if you test positive on other thrombotic tests, which fortunately I didn't.

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Interesting stuff.

I had surgery cancelled at the last minute in 2007 because when they did the pre-op blood tests, they decided I was severely anemic. Then they decided that it wasn't a lack of red blood cells (anemia); it was just that they were all clumped up in the test tube (at least, this is how it was explained to me). Surgery was rescheduled a few months later, and at the pre-op, the same thing happened. Once again they were ready to cancel it, but a savvy nurse who knew what had happened before used a different test tube (maybe the kind with an anticoagulent??), and so the surgery proceeded.

I tried to get some answers afterwards as to why my blood was "clumping" (!) but no one was particularly interested... GP just said the usual ("if there was something wrong they would have told you"). About 6 months later, I had blood drawn (can't remember why) and sure enough, they couldn't use the sample. Had to have it re-drawn and put in "a different test tube." Still no answers or interest in finding out why - thank you, NHS. (Sorry, I'm on a bit of a NHS rant today.)

I did some internet research and did come across something called "Hughes Syndrome" or Antiphospholipid Syndrome. Some of the symptoms seem very familiar - MS like neurological symptoms, mottled skin, cold extremities, etc. There's a good site at www.hughes-syndrome.org . However, that's as far as I got with my understanding of the condition.

Will be watching this thread!!

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I have antiphospholipid syndrome and according to Professor Hughes in London (for whom the syndrome is named) it can cause various autonomic abnormalities. I am on plavix and lovenox (and previously warfarin) which has completely aborted my severe daily migraines, trouble thinking, and occasional stuttering, but it has not helped my autonomic dysfunction(even though all of my symptoms started together). But according to Professor Hughes anticoagulation usually does improve autonomic dysfunction in this syndrome provided it is adequate. The neurological manifestations of Hughes syndrome usually require higher doses of warfarin and just like dysautonomia, most doctors only know about the thrombotic, not the non thrombotic, manifestations.

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Thanks HyperPots8 - again, this is all very interesting, esp. the fact that the plavix and lovenox got rid of your migraines, but NOT your autonomic dysfunction. It sounds like there's still a lot to be learned.

If you don't mind my asking, why have you discontinued the warfarin if it may help your autonomic dysfunction? Were there too many side effects?

thanks.

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I tried warfarin twice, the second time to the higher goal INR Professor Hughes advised. it did not help my autonomic trouble and my migrainosus symptoms came back (not as bad as they were in the beginning, but bad enough) so I switched back to the lovenox since for me it is clearly more effective. I know that has been true for others with APS. In addition, for me, my INR on warfarin is extremely labile ( not uncommon in APS) and lovenox feels much safer (it is dosed based on weight, not INR). The next step is a trial of IVIG and if that is not effective then rituximab.

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  • 2 weeks later...

Sorry for the delayed reply -- thanks for the info, HyperPots8!! I will see if I can get a referral (I seriously doubt it). I'm at the point where I think I'll just have to go through the hassle of changing GPs (again) b/c my GP won't do much. I'll definitely let you know if I get tested. Thanks again.

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