These Forums have been Archived.

You cannot post new messages or reply to old ones here.

Please use our new forums located here
or click "Discuss" in the menu on our new site.

Raynaud's Association
Decrease font size
Increase font size
Topic Title: Raynauds and Blood Clotting Issues
Topic Summary:
Created On: 12/11/2008 11:36 PM
Linear : Threading : Single : Branch
Topic Tools Topic Tools
View topic in raw text format. Print this topic.
 12/11/2008 11:36 PM
User is offline View Users Profile Print this message

Author Icon
PortillosLvr

Posts: 44
Joined: 03/19/2006

I read the previous post about blood clots and Raynaud's, but I believe my issue is quite different.

Before anything else, I am seeing a doctor about this, but sometimes I find that the information I get on this site is not only more helpful but also helps me talk to my doctor in a more informative manner, so here goes.

I got a new Rheum a few months ago because I moved. She did all the normal tests to confirm that my Raynaud's is primary, but found that my PTT was elevated. So she sent me to a Hematologist, who told me that I have a blood clotting disorder that makes me more susceptible to clotting. He explained that these are independent disorders, but my Rheum later told me that Raynaud's patients tend to have thicker blood, which may contribute to the clotting disorder.

All of this is very inconsistent to me. So I thought I would turn to all of you. Has anyone else had abnormal PTT results? Does anyone else see a hematologist as well?

There's more. (But this is a little off the subject)

This I haven't seen the doctor about yet, but I am going next week. At the end of last winter I started to have some pretty severe pain in the base of my second-to-biggest toe (not in the toe itself, but in the foot more but close to the toe). It started out as kind of a nuisance, and got worse and worse until I started avoiding walking as much as possible. There was nothing abnormal about the appearance of this toe or my foot in general, and it doesn't hurt when I move it, only when I put pressure on it/walk on it. As it warmed up, the pain went away. Over the summer I completely forgot about it. Then about 2 weeks ago, as it started to get cold again, the pain slowly came back. Now it is back full force, and it hurts. The foot in general (all the toes) gets a little swollen when it is below my heart, but when I raise it above my heart for even as little as like 20 seconds, the swelling subsides and the pain is greatly reduced.

My boyfriend thinks it sounds like gout. I'm 25. I think it's Raynaud's related because it went away over the summer. I wear two pairs of thick wool socks everyday, is there a chance that I am doing some sort of damage by over-insulating? Has anyone else experienced anything like this?

I'm sorry, this is a ridiculous post, as all my posts are. I'm long winded.

So meds, because I'm sure someone will ask. I cannot take anything for the Raynaud's because my blood pressure is too low already. For the blood clotting thing, I am taking low dose aspirin and I have to get up and walk often if sitting for long periods of time.

Thank you everyone for sitting through this and for your responses in advance.

-------------------------
Primary and APS, diagnosed at 10ish, 17 years ago
 12/12/2008 08:54 AM
User is offline View Users Profile Print this message

Author Icon
Sarah

Posts: 2411
Joined: 10/16/2005

Hi Karla, good to see you posting.

Do you have a name for the clotting disorder?

I have a clotting disorder as part of my lupus called the antiphospholipid syndrome or APS . It is also called sticky blood or Hughes syndrome in the UK. It is estimated that 30% to 50% of people with lupus have APS. I have had a DVT in my leg so am on coumadin.

In APS an elevated PTT is present along with a positive lupus anticoagulant test. There are other blood tests that can be run. APS causes Raynaud's like symptoms. APS can be primary or secondary to a connective tissue disease, most commonly lupus. APS is an autoimmune disease.

I will stop but am curious as to wheter this is the clotting disorder you have been diagnosed with.

BTW--since it is not known what causes Raynaud's I am not sure that the statement that people with Raynaud's have thicker blood is exactly true. I have read research reports that hypothesizes that the stickiness (viscosity) of blood may be a cause of Raynaud's.

Sarah

-------------------------
Secondary Raynaud's with a connective tissue disease
 12/12/2008 12:58 PM
User is offline View Users Profile Print this message

Author Icon
PortillosLvr

Posts: 44
Joined: 03/19/2006

Hi Sarah,

Thanks for replying. I actually haven't got the results from the lupus anticoagulant test back yet. They had to send them to a different hospital. I'm assuming when I go to the Hemo next week he will have those results. So far my blood issue does not have a name because the tests are not done.


I am going to read up on APS. What is a DVT?

Katy

-------------------------
Primary and APS, diagnosed at 10ish, 17 years ago
 12/12/2008 04:26 PM
User is offline View Users Profile Print this message

Author Icon
Sarah

Posts: 2411
Joined: 10/16/2005

Katy, sorry about calling you by the wrong name in the above post.

A DVT is deep vein thrombosis. The more common name is a blood clot. Miscarriages and migraines are also associated with APS.

There are many good articles about antiphospholipid syndrome on the web so you shouldn't have difficulty finding information. The is also an APS website, http://www.apsfa.org

Sarah

-------------------------
Secondary Raynaud's with a connective tissue disease
 01/07/2009 01:42 PM
User is offline View Users Profile Print this message

Author Icon
SandyG

Posts: 69
Joined: 01/05/2009

I have a theory that many people with Raynauds have been exposed to toxins which have caused not only the Raynauds but also to cause their blood to become "sticky" (or thick, or clotting disorder). I have met alot of people with it who have this same trouble. IVIG may help but its really expensive and only temporary. You kind of wonder if it is some kind of blood poisoning. I use low dose aspirin off and on too, it makes me so much more alert and sparky, but I take holidays because I am worried about long term affects.
I wonder if bloodletting would help?
 01/09/2009 11:51 PM
User is offline View Users Profile Print this message

Author Icon
vampyhands

Posts: 72
Joined: 01/08/2009

This post makes me curious...has anyone here ever given blood? And had problems with it?
 03/04/2009 11:35 PM
User is offline View Users Profile Print this message

Author Icon
stephnie13

Posts: 6
Joined: 03/04/2009

I haven't been officially diagnosed and this is my first time on this forum. I was diagnosed with a clotting factor 12 deficiency at around 13 years old, I'm 31 now. This is diagnosed upon a irregular PTT test. About 7 years ago my legs started getting cold at night. Only my shins though, and I have to sleep in long pants and leg warmers and lots of covers. Today I had a veinous study done by my hemotologist to check for spasmotic arteries. The technician mentioned raynauds and numbness in the extremmities. I was shocked because my fingers and toes started doing THAT about 3 years ago. It's not frequent, but I only notice it in cold weather and seems to have done it more this winter than in previous two. I don't know if this helps you, I'm still pretty confused. I have read the abstracts to research papers that show that people missing factor 12 are at increased risk for blood clots, so the info you wrote on here does nothing but scares me more!!! I have had 3 superficial ones already!! Is all this connected?
 03/05/2009 01:08 PM
User is offline View Users Profile Print this message

Author Icon
Greenwood

Posts: 6
Joined: 02/27/2009

This talk of blood clotting reminds me of something strange that has been happening to my legs that I've wondered about before. I have two "bruises" that appeared randomly on my shin, around where my socks end. I don't wear tight socks and often wear those diabetic socks with no elastics so I don't think the socks caused them. The first appeared in June and is still there nearly a year later. I casually mentioned it to my doctor and he said that sometimes bruises cause permanent discolouration and not to worry about it. He assured me it wasn't a varicos vein. Since then, another one appeared, also near the sock line. It has been there for about two months. Could these be surface clots? Has anyone had this before? My legs ache and "deep-itch" a lot, especially after a bath but both legs do it, not just one.
 10/22/2009 08:45 PM
User is offline View Users Profile Print this message

Author Icon
runsteady

Posts: 2
Joined: 10/22/2009

Yes, as an answer to has anyone had problems giving blood. The blood trickles out and then stops running.
 10/22/2009 10:23 PM
User is offline View Users Profile Print this message

Author Icon
joeyfl

Posts: 3
Joined: 04/02/2007

Sandy
I have raynauds and I Know that I was exposed to high levels of Dioxin, ( Agent Orange ). the military does not reconize any one who was not in Veitnam But soldiers who were in the military during this time were exposed at neumerous training areas in the US. these bases were sprayed with tons of the stuff. The DOD Passes the buck by saying that the facilities engineer was responsable for the maintenence of the military bases and I believe they have successfully buried or destroyed all records of the fact that thousands os soldiers were exposed. There is some research that Dioxin does cause some forms of autoimune diseases.
 11/25/2009 03:58 PM
User is offline View Users Profile Print this message

Author Icon
PortillosLvr

Posts: 44
Joined: 03/19/2006

Hi Sarah and everyone,

I had forgotten that I had posted this, sorry for the delay.

I do have APS, I got the diagnosis shortly after my post. My former doctor who made the diagnosis and my current doctor, who I am just getting to know, seem to believe that these two diseases are unrelated.

I was not prescribed anything different for the APS. Just told to make sure I get up and walk around during long car/train rides and during work, and keep taking the aspirin, although not low dose anymore, regular strength.

Since the beginning of the year, I lost my job and took another in the Rocky Mountains of Southern Colorado, in a very small town at 9300 ft in elevation. I got a lot of really warm gear, some of which I will post in the products section because I am so pleased. I have started going to the Denver Arthritis clinic for treatment because they work through my doctor here (it's 7 hours to Denver, but we have a doctor in town once every other week who will administer whatever the Denver doctor says, so I don't have to drive up there all the time). He wants me to go back on the meds I was taking a few years ago due to lack of other affordable options (pre-exisiting condition, not covered). I'm nervous about this, as previously these meds (c-channel blockers) dropped my blood pressure to the point of passing out. He says we will be careful, and I think there's a blood pressure machine at the Fire House.

Sarah, thanks for the website. I guess the miscarriage risk scares me the most, and after the diagnosis in Boston I opted to have an IUD placed (I've never been able to take birth control, migraines). I was told I could still have babies but not where I live right now due to lack of medical care. I was also told that at this elevation the effects of these diseases is not well known, so be careful.

I have never given blood...I was too light until after college, and then told not to do it due to the Raynauds. However, I was having blood taken for testing on a regular basis in Boston and had no problems.

My new doctor does recognize the fact that I have two "side effects" of lupus without lupus. My lupus tests are still coming up negative.

Thanks for all this input. Check out my products recommendations coming soon to a Raynauds forum near you!

Katy

-------------------------
Primary and APS, diagnosed at 10ish, 17 years ago
 02/09/2010 08:40 PM
User is offline View Users Profile Print this message

Author Icon
acadia

Posts: 21
Joined: 02/09/2010

I have the opposite problem. I have raynauds and a low platlette count which makes me more prone to bruises and bleeding.
 09/24/2010 12:30 PM
User is offline View Users Profile Print this message

Author Icon
Ardemisa

Posts: 1
Joined: 09/24/2010

I just found out that I have Raynauds. My doctor told me that i needed to take Aspirin 325mg daily to thin my blood out and prevent clots. The thing is, when i researched symptoms of Raynauds i don't really seem to have alot of them. I do sometimes have cold hands and feet, but they don't turn white and hurt. Does it seem necessary to start a regimen of aspirin when i don't seem to have the more severe symptoms? I'm 25 years old and i'd rather not have to take the aspirin daily if its not medically necessary.

Ashley
Statistics
58569 users are registered to the Raynaud's Association forum.
There are currently 0 users logged in.
The most users ever online was 7413 on 06/05/2013 at 11:35 PM.
There are currently 1424 guests browsing this forum, which makes a total of 1424 users using this forum.

FuseTalk Basic Edition - © 1999-2014 FuseTalk Inc. All rights reserved.