Anyone else have Low Factor VIII Levels???

[Leigha]

I has occurred to me that I may be alone with this - so am asking, for it has made my APS quite difficult. Because my Factor VIII Levels are low (which is hemophilia) I was not a candidate for warfarin and heparin did not agree with me either. In other words, I have both the sticky blood of APS and the inability of the blood to clot with Low Factor VIII. Talk about opposites! My doctors have not known what to do with me, but that's another chapter - my question remains: Am I truly alone or is there anyone else out there?? Or, has anyone even heard of this??

Thank You!

[emmaj]

Hya, if you get a good heamotologist he should advise you - i have a great one and my factor levels jump about - he did a second test and it was ok - maybe you could get them tested intermittedly. He sai it shouldnt be a problem to me for it to be sorted so i wouldnt worry too much x

[Leigha in reply to emmaj]

Hi and thanks, Emma. Do you take either warfarin or heparin? If so, perhaps your levels aren't that low. ?? I'm sort of mid-level, but was told absolutely no to the 2 meds listed above for APS. What about you, if you don't mind my asking? My hematologist is very matter of fact about it, but will ask her to again check my Factor VIII Levels - although they have been an issue for over 20 years (was told it was heriditary).

I must take an alternative medication for my APS, but it has worked so very well - I'm lucky.

[Renae]

Leigha, yes factor VIII is heredity. So sorry you are dealing with these....hang in there...

[Leigha in reply to Renae]

Gosh and yes, I did know that, brain fog!!! Have to keep doing my home work, over and over. Thanks, Renae.

[emmaj]

Hi I had the tests before I started warfarin, so it wuld have been a true test, I was worried too so I can understand completely how you feel - he didnt give me any info really just assured me that it could be sorted, hope yur ok x

[Leigha]

Hello again Emma.....

I went back to my original tests and think may understand difference. I use hemophilia loosely here, for it is truly von Willebrand Disease which we have. Related closely to hemophilia. Von Willebrand Disease has 3 types and I am type 2, which is symptomatic. Meaning I've had rather serious problems; almost died in surgery once from bleeding. Type 1 has no symptoms, type 3 is the type we hear about where one can't get a scrape without it possibly being life threatening from bleeding to death.

Am wondering if you might have type 1 and that is why you are able to take warfarin? My tests were also done before any medication. And I was told absolutely could never take warfarin. We tried the heparin for 3 months but my body could not tolerate it. Hence my question, wondering if there are any others 'like me'. You are there, but able to take warfarin.

Sorry for the long post, but this has been a ponderous question for me and still I wonder if there are others whose levels have been high enough that they've been told they could not take warfarin. What my hematologist did tell me at the time was to go home and get my will in order as there was nothing that could be done for me. But that starts a new chapter and not in the body of this conversation. Thanks again for your reply!