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Thread: Tested positive. Anyone have a clotting disorder and tested positive? Anxious.

  1. #1

    Question Tested positive. Anyone have a clotting disorder and tested positive? Anxious.

    Hi Everyone.

    My Dad developed what he thought was a chest cold almost two weeks ago, which we found out recently, was Covid. He is vaccinated and has been pretty sick (seeing his doctor soon), so we all ended up getting tested with the at home kits and it turns out most of us here are positive, except my Mom; although she has a suspicion her test gave a false negative (getting checked monday). I was honestly under the impression my issues were all allergy based, but I guess not. Iv'e been dealing with a scratchy throat for days up until I lost a chunk of my taste and smell today, so I know I have it. Going on day 5 or 6 is my estimate and I feel like I have a sinus infection. I'm 31/f if that helps.


    Anyways- I'm not vaccinated and I am hetero Factor V Leiden and have a huge fear of getting it due to my family history of issues. After having various close young female relatives with the same clotting disorder as me (also hetero) suffer from blood clots with the vaccines and one suffering a debilitating stroke (none were on blood thinners prior, nor had an active history of clots), I decided I would hold off. I work remote and don't go anywhere as it is and most of my communication is online, and thought I was pretty safe. My Mom also has the same disorder and was OK-ed to get the vaccine because she is on an aspirin regimen and has been for 6+ years. Thankfully my Mom didn't suffer from any clots from the vaccine, but suffered some hormonal issues as the result.


    If you have a genetic clotting disorder and got the vaccine and/or Covid, I'd love to hear your story and if you were on blood thinners/ were not! I'm calling my doctor Monday once the place opens to discuss. I was told because I don't have an active clot nor have had one personally, I didn't need to be on thinners- but would potentially need to be in times of risk. Iv'e been trying to research this area, but cannot find anything on said topic! So I try to talk to as many people as possible to get some kind of insight. I spoke with some RN's who work with factor 5 patients and mentioned not enough studies have been done for research and when I asked about the vaccine, many have also advised me to probably hold off due to the family history with reactions (without blood thinners), but of course that is my decision. Wondering if I need to meet with a hematologist to go over my actual risk or possibly be put on blood thinners temporarily to get it. I have no idea how this works. It's all happening so fast. I also found out a family friend's Uncle who also has factor 5, got the vaccine (and WAS on blood thinners), died a week later from clots in his legs that traveled- suspected to be from the vaccine as well.


    Now that I actually have covid, my biggest fears are, of course, blood clots and taking the turn for the worse as I naturally have anxiety. It's hard to stay off the forums and read the horror stories. I don't feel super exhausted and have been hydrating, taking my vitamins and moving about. I always have a squeezing and tight feeling in my chest and back, but I have diaphragm and thoracic spine issues that have been going on for YEARS- so I have no idea how to tell if it's something worse- like pneumonia festering under all of that. Started with a sore and scratchy throat that I assumed was allergies along with all the post nasal drip. A day or two later I got a migraine/ digestive issues/ back pain, which I chalked up to being how I slept as all of this is very common for me to get. Scratchy throat continued and then my Dad tested positive, so we all got tested which is when I found out I also had it. Congestion symptoms continued and now iv'e lost a lot of my taste and smell and my eyes hurt, but at the moment I can taste and smell the important things to me (coffee and chocolate haha). It's all in my sinuses. Don't have a real cough, only when I lay down I get a tickle and the post nasal drip starts and I usually start sneezing. Iv'e also been getting these weird random tingles randomly on my body that last a second or two then disappear. It's all been very strange.


    Sorry for all the details here! I just don't know what to do. Trying to keep positive and keep busy by so many things I'm thinking about and I'm not really sure if there is a right answer. Hoping I am not the only one going through this. Iv'e been trying to research and network with other people in the same situation as me who have clotting disorders and are going through this/or have gone through this, and I haven't found any as of yet


    Thank you all! And to anyone who reads this. Hopefully all is well with you too.

  2. #2
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    Re: Tested positive. Anyone have a clotting disorder and tested positive? Anxious.

    I have ITP (so exact opposite of you--I don't clot well), but I got the vaccines (J & J and booster), I just had to go in and get a transfusion of platelets in between...but I'd rather have the transfusion than covid. One of my brothers has APL (clots too much, like you) and he got the Moderna vaccines, and hasn't had any issues from them.

    When do you next see your hematologist? They're the ones that can tell you if you have any lasting effects of covid.

    As for the other symptoms, they can all be chalked up to sinus issues, even the tingling. If you have fluid in your inner ear, it can easily cause that.
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  3. #3

    Re: Tested positive. Anyone have a clotting disorder and tested positive? Anxious.

    Thanks so much! I donít have a hematologist at the moment and the last time I went was ten years ago for a bunch of genetic testing which came back clear for the other heredity clotting disorders that run in the family. I plan on calling my doctor Monday to see if I could get directed towards one to discuss cause I know my primary care doesnít really get involved in that. I was told previously because I havenít had any issues personally not to bother nor worry, but Iíd rather be safe than sorry and nip any potential issues if I need to, now that Iíve been infected.

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