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Feeling rough still

amy1808 profile image
15 Replies

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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amy1808
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Lure2 profile image
Lure2

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

amy1808 profile image
amy1808 in reply toLure2

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 🤔

Lure2 profile image
Lure2 in reply toamy1808

What INR do you have?

Kerstin

amy1808 profile image
amy1808 in reply toLure2

3.1 yesterday so a tad low

Lure2 profile image
Lure2 in reply toamy1808

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

amy1808 profile image
amy1808 in reply toLure2

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

Lure2 profile image
Lure2 in reply toamy1808

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

lupus-support1 profile image
lupus-support1Administrator

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

amy1808 profile image
amy1808 in reply tolupus-support1

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 🙁

amy1808 profile image
amy1808

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

MaryF profile image
MaryFAdministrator in reply toamy1808

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?

KellyInTexas profile image
KellyInTexasAdministrator

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.

amy1808 profile image
amy1808 in reply toKellyInTexas

No will have a look now

Benna1 profile image
Benna1

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

amy1808 profile image
amy1808

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

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