It's been an interesting journey

Hi all! I've been following for about 8 months. This is my first post. I was diagnosed with pbc and aih in December of last year (2015) after many years of unexplained illnesses. I'm currently taking ursodiol. In 2013 I had pulmonary embolism which they thought was from estrogen I was taking due to a hysterectomy I had in 2008. I discontinued my estrogen in June of 2015 and xarelto 4 months later. I also Hashimoto's thyroiditis. I have severe fatigue and have had extreme itching on my arms. Last week I had pain so severe I couldn't move my arm, come to find out I have a massive blood clot in my arm. Just wondering if anyone has had any problems with blood clots.

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  • Hi Kathy71172

    Welcome to the group, it does seem to take quite a while for a lot of us to get diagnosed. I was diagnosed about 10 years ago but am sure I had symptoms a long time before that. I have not had a problem with blood clots but I can empathize when it comes to severe itching which I still have and it brings me very low.

    Hopefully you are able to have the blood clot sorted out and are feeling better.

    best wishes

  • Thanks butterflyEi . It gets so frustrating dealing with the doctors. They make me feel like I'm crazy sometimes. The blood clot thing is disconcerting and worrisome. I hope you are doing OK. Thank you for responding :)

  • I had the same experience with blood clot, they said went through heart and lung, according to blood tests, but more intensive tests showed nothing of that sort. Now they tell me my anti bodies attacked my heart and lung and they were in a fight and the body won this time. Sounds like horror movie. Lots of luck and health

  • Thanks Rockie ... I can relate. It's been a long rough road. All I can do is keep trudging along. I hope things get better for you. ☺

  • Kathy 71172 Thanks. Just take it day by day,. Now out of the blue I got a cold. Went to church yesterday morning and hour later running nose started and my throat is also sore. We have interesting bodies. Never know what to expect next. Have a good week

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