Sticky Blood-Hughes Syndrome Support

Bored with chasing my rheumatologist... Oh and happy new year!

So back on the 4th December I had an appointment with the aforementioned rheumatologist. He agreed that my INR range was too low and probably the cause of my cognitive issues. He said he'd write to my GP to get them to amend it.

I've been chasing that letter ever since and have been getting weird pains in my arms and legs as well as my chest all month. My INR has been up and down more than a tarts knickers and I'm fed up with it!

On top of all this my blood pressure is stupidly low, I'm mega stressed (house move and the new place fell through on the day we were supposed to be in, thanks Mr ass face landlord! how did you know that's exactly what I wanted for Christmas...?) and I'm going to be epically ill once the move is done and I'm no longer running on pure panic and adrenaline.

Chest has been feeling crappy all day, nearly passed out every time I stood up. Seriously wondering if the pain in my calf is something to worry about. Will sue the rheumatologist if I develop a clot after not being at the agreed INR because he couldn't be bothered to dictate a letter.

Sorry guys just needed an old fashioned rant so I can start a new year having gotten all that off my chest and out of my head!

Happy new year, I hope it's a good one for everyone here!


3 Replies

Time to listen to Wierd Al Yankovic's "I'll Sue 'Ya?"

Happy new year. Hopefully you'll grasp that letter, deliver it to a compliant GP, get your INR up -- and then all will be well.

( and, of course, the move will occur in a timely fashion with no rain on moving day.)


Aw ,sounds like your going through a really rough time, i can fully understand the stress & trauma you are going through.

Why is it we constantly have to chase these wretched consultants ? I find it infuriating,

Dont ignore that leg, if it get's any worse go to A & E.

What an awful Christmas for you, i hope the New Year is a little easier for you.

Top priority is to watch your health at this present time, i have been in a similar position so understand what your going through, it plays havoc with your health. Big

Hugs Hun x

P.s How do you know how often a tarts knicker's go up & down ? :-) Bless ya


Hi happy new year my INR been down for the last 3 weeks it's been 1.7 then this week it's been 1.3 not been well think I got a chest infection doctors put me on amoxicillin but the DN told him I was not well she was thinking blood clots I don't think that he was going to admit me to hospital but we sed try the meds first and OT been out to see me cos Iv only just come out of hospital whent in with sing of a stroke but they sed it was not iv got APS as well so OT say my blood pressure is fine when I sit down but when I get up it goes well down. So hope u get sorted soon it's gets u cross not get appointments iv been waiting a long time for mine and doctors have been to get me one sooner my rant over as well hope all goes well Lesley 61


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