Still learning

[3Snyders]

Hello All

I had a superior mesenteric vein thrombosis almost a year ago. The hematologist that I have been seeing tested me for lupus anticoagulant and I am positive for it. My target INR is between 2-3 and I have been in range for the last month.

My hematologist referred me to a gastro dr due to me always having bouts of diarrhea that started in my early 20's and I still suffer from. If I am not having diarrhea, it is normal for me to have atleast 6 BM per day. The gastro doctor did blood work for Celiac, Crohns, IBS and all of the tests have come back negative. I also had a colonoscopy which showed ulcers in my lower ileum and a few polyps(benign). My hematologist thought that maybe the location of my clot and my stomach problems may be connected, however the gastro dr does not agree.

I have also been having tingling(pins and needles) in my hands and feet. It seems to happen more so at night when I am in bed reading.

Also does anyone seem to have "phantom pains/tinges" from the location of the clot?

I guess I am just looking for some insight from anyone that may have had a clot in the same area. I sometimes have a lot of anxiety about this clot and if I will get another one. Should I be seeing any other specialists?

If you made it this far, thank you for reading.

[Manofmendip]

Hi

Many people with APS find that they need a higher target INR range than 2.0 - 3.0. I felt much better when my INR was around 4.0 and if it droped below 3.3 I felt very bad and had to inject Fragmin and up my Warfarin dose until I was back in range, then stop the Fragmin.

Dave

[Lure2]

Hi,

I totally agree with Dave that you should be on a higher INR-level to avoid some other clots or microembolies.

I am om Warfarin since 4 years with a therapeutic level between 3.2 - 3.8 and I selftest every second day. I feel best on an INR round 3.8 or perhaps higher but my doctor will not allow me to go higher. If i go under an INR of 3.0 I have to take a Fragmin shot. I am also positive to all the antibodies incl Lupus Anticoagulant.

I have read you live in the US. I have not understood if you have got an APS-Specialist.

I do not know where you live but try as much as you can to get to a doctor that really understands APS. We have too thick blood and need to be properly anticoagulated to avoid further clotting. An APS-Specialist knows what to look for.

Look at apsaction.org

Please stay on this site and also read "Sticky Blood Explained" by Kay Thackray. She has got APS herself and writes about all the different symptoms of this rare illness that so very few doctors understand. I have it in pocket and it is a very good book.

Please let us hear how it goes for you!

Best wishes to you from Kerstin in Stockholm

[3Snyders in reply to Lure2]

Thanks Kerstin - I do not have a APS Specialist, though my Hematologist is listed as a treater of APS. I have the book by Kay Thackray on order from my local library and am anxiously awaiting to read it.

[GinaD]

I had similar symptoms that came and went--one week it would be 4-6 BMs a day, then next week constipation. Punctuated with constant gas. I tried cutting carbs out of my diet and amazingly, all those Gi symptoms went away and my energy levels came roaring back. Turns out --I have Celiac. I have stayed gluten free ever since. My Fe levels rose to not-anemic normal for the first time since I became anemic at age 4. And all the rheumatoid blood measures went to normal as well so that hematologists who have only seen me since I went gluten free insist I can not have APS. the doc who treated me back then disagrees, so I stay on warfarin. But there is no doubt my body is a lot happier avoiding gluten.

[3Snyders in reply to GinaD]

Thanks so much for your response. I would really like to try gluten free, but do not know if I have the willpower. I think I should read up on it a little more.

[GinaD]

If you really are sensitive to gluten, you may find that you feel so much better gluten free that the willpower arises from your lack of symptoms. Mine sure did. "Tiramasu? No thank you." (but inwardly I'm thinking "Pleasant tasting poison? NO WAY JOSE!!!)