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Sticky Blood-Hughes Syndrome Support
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Feeling rough still

Don’t know whether it is my APS or something else . I am well coagulated. My head is dizzy , keep going weak in different places in my body , just feel really in well .

Went back to my Dr yesterday , had a good check up and he isn’t sure what is wrong .said to wait until my ECG done and bloods on the 9th . I don’t feel as though it is heart related . I feel like I did before I started on Amitriptyline . Strange thing is this afternoon I will probably be ok. Just the mornings that are really bad . Don’t know how I am Managing to work 😪

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What anticoagulation drug are you on at present after seeing the new Specialist and what INR should you stay on?

Did they talk about doing an Ecocardiography on your lung/heart? Is your bloodpressure ok?

Kerstin in Stockholm

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B/ p slightly up . Waiting to have echocardiography

I am on Warafrin and clopidogrel and INR in range .

Feel ok this afternoon, it’s weird 🤔

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What INR do you have?

Kerstin

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3.1 yesterday so a tad low

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I need 4.0 and the Specialists agree.

I have forgotten if you are Lupus Anticoagulant? If not, try to selftest and do a couple of doubletests to see if there is any difference between the two bloodtests (when you have started selftesting).

You should test often to be sure that you keep the INR high enough and stable also.

Kerstin

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Yes LA and self test every other day , self testing 2 years now x

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As you also are Lupus Anticoagulant and selftest every second day, I wonder if the INR taken at the hospital lab in your vein and the INR taken by the Coaguchek-machine in the finger is about the same value?

My differ quite a bit every time so I always have to withdraw perhaps 1.0 from the machine-testno.

It is important that the DIFFERENCE IS THE SAME otherwise you can not rely on the result.

Kerstin

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I am sorry reading you are feeling so poorly and struggling with work. It is this "in between" stage that is very difficult and frustrating: not knowing what is wrong. What dose of amitriptyline are you taking?

If you are struggling, surely your GP could sign you off work?

You have another week before the ECG & blood tests? Why the wait for blood tests?

With good wishes,

Ros

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Good knows why they didn’t do blood yesterday.

To be honest even though I am struggling at work at least I have people around me . If I was at home I would be alone if anything happened and it takes my mind off it . I don’t get paid when off work either 🙁

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Talk about brain fog , I have just read a text out to my daughter from my phone !!! then I walked into the lounge looking for my phone and said I think I have left my phone at work 🙈😱, OMG talk about Dementia I’m only 49

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I know I always go on about this, but have you done any decent thyroid tests lately? Just to rule out any influence from that in the mix!!! I presume they have done things like CRP and ESR and checked for inflammation, infections and things?

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I’m at my hematologist office now- waiting. Did you read my response to you about an hour and a half ago from your last post? Maybe yesterday? Was on Rotirro 1 Post about maybe going to London Bridge.

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No will have a look now

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Hi there

I recently had a similar experience. I'm not that long on Warfarin and Plavix so didn't realise that it was INR related.

I was dizzy, weak and was having this weird kid of vertigo feeling.

Next thing I know my INR was up from 2.1 to 8.6. Had to drop my meds altogether and very brief stint in hospital.

INR good again now and back on meds.

Anyway, I didn't realise that it al was due to my INR shooting up between tests.

Feeling better now but only realised afterwards what the reason was.

Maybe get a INR test asap and after a couple more close together just to keep an eye out for it.

Hope you feel better soon.

Sincerely

B

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What’s CRP and ESR ? I have no thyroid , it was removed in 1996 due to cancer x

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