Blood clots and sarcoidosis

Does anyone know if sarc makes us more prone to having blood clots? This past fall, I had 3 dvt (deep vein thrombosis) and 2 PE's (pulmonary embolisms.) They never found a cause other than I had been taking birth control pills at the time. In hindsight, they also believe that some if not all of my 5 miscarriages were probably from clots as well. I have had the full clotting panel work-up done twice and everything is always negative. I did 6 months of thinners and was told I could stop.

For the last couple of weeks, I have had a funny, different sort of pain in my left calf. I remember before when I had the clots that I felt like I just wanted someone to rub my calves, like they just ached terribly. Than, I had the chest pain and cough, apparently when two of the clots broke off and went into my lungs. Its actually when they were able to dx my sarc, after being ill for 4 years.

Anyways, I am trying not to be a nervous nelly and really don't want the expense and hassle of a ER visit. However, this "pain" in my left calf is really starting to worry me. My left lower leg may be a little swollen but nothing dramatic, its not red and its not hot or cold, compared to my right leg. When I rub it with my hand, I have a definite sore spot but no apparent bruise or anything else.

I have been reading up on blood clots but all the sites seem to say the same thing and nothing more than I already know. Does sarc make us more prone to clots? Does having a history of clots make you more prone to having more clots? I know if I call my PCP, she will tell me to go to the ER, I will feel like such a schmuck if I go and they don't find anything. Not to mention the cost and worry to my hubby.

Report post

6 replies. Join the discussion

Well, I found out that having blood clots once DOES make you more prone to having them again. I did read that auto immune diseases can raise your risk for getting them as well. But, as Paradox pointed out, sarc isn't technically an AI disease so not sure if sarc raises our risk for clots or not? Maybe if paradox reads this, he could answer that for me? Maybe if he could also shed some light on the con's and pro's of staying on coumadin when there is no known cause for the clots.

Report post

When I went to the pulmonary doctor he checked my ankles by putting pressure on them. He then reached around to the back of each calf and pressed just a bit and asked if that hurt. After he did that to the other calf I asked why it was that he was asking if it hurt when he pressed on the back of each calf. He then said that if it did hurt it could have meant that I had a clot. Now you noticed that I said (could have meant.) That is because there have been times that my calves have hurt me so bad it was so hard to even stand let alone have someone rub them. So there might be another reason your calves are hurting. What I would do was to keep in touch with you pcp so they can monitor you. Keep us posted as to how you are doing.

Report post

okay i wonder too hi im tia i had two miscarriages and the doctors just gave me the i dunno look and run around then they finally diagnosed me with sarcoid after finding out about the uvietis and potential blindness ... but lately i been noticing knots in my legs and my hands and feet swell up reguarly .. have u had any problems with that... ohh and what do you do about those pesky yeast infections ???

Report post

you may want to go to the clinic and have your leg checked out - particularly w/ your history.

Report post

What's your platelet count? Mine got up to 850,000+, which is over twice the upper limit of normal, and it was attributed to sarcoidosis. The phenomenon of having way too many platelets is called thrombocytosis. I take a baby aspirin for it (and more prednisone...) and now my platelet count is down to around 600-650,000. That puts one at much greater risk of clots. I haven't had a DVT (deep-vein thrombosis) or a PE (pulmonary embolus - in the lung). I have had little tiny clots that make my fingertips turn purple. That's pretty odd/scary. Anyway, I'm getting a hematology referral to figure it out. I may need to go on an actual 'blood-thinning' drug like coumadin/warfarin/lovenox. We'll see. Anyway, you want to check your CBC and maybe a protime/INR. If the underlying cause is in your blood, it can be addressed medically.

Report post

P.S. If you feel like you may have a clot... go to the E.R. Better to get sent home with a muscle strain than to have your hubby have the 'worry & cost' of a funeral!

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support FSR

Help the Foundation for Sarcoidosis Research reach its goals and support people like yourself by making a donation today.

Donate to the Foundation for Sarcoidosis Research

Discussion topics

Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

Community leaders