INR up and down vitamin K, and then f... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,443 members10,641 posts

INR up and down vitamin K, and then fragment depending on reading. I feel so ill

mariamoo1 profile image
3 Replies

Hi everyone, thank you for all your support.

My arm has had a CT SCAN. Awaiting results to see if they can re- break it, to put the humerus and shoulder in the correct position so it can heal better, and give me more movement back and hopefully down the doses of morphine I’m living on, but the surgeon is very reluctant because of my blood. I have an appointment with a haematologist tommorow.

But in the meantime my INR HAS BEEN VERY HIGH over 8 on the doctors surgery machine. I’ve now been given vitamin K twice this week. So I have yet again gone from too low 1.0 to over 10 at times. From taking 14 walafarin and the injections to taking nothing. I have had very bad nose bleeds, lasting an hour or so, headaches, and any tiny cuts bleeding like crazy, this week when INR over 8+ and then suffering a stroke and DVT in the last year when INR 1.0!

Anyone any ideas just what I should be asking tomorrow?

Still under a lot of pressure from my work place, they are trying to sack me for being ill for 11 months. Off work on a doctors note. Union involved, but still getting treated terrible. Now had to go to a phase two, uk, work meeting. They are forcing me to see there occupation health doctor who knows nothing, like so meny doctors about our condition. All this worry. My stroke happened at work, whilst I was on shift. They did not get me first aid, or an ambulance just told me to drive home and lose pay.

I actually work in a uk Airport!

Please if any one has any thoughts

Maria

Written by
mariamoo1 profile image
mariamoo1
To view profiles and participate in discussions please or .
Read more about...
3 Replies
MaryF profile image
MaryFAdministrator

I am very glad you are being seen soon, and regarding your work place rights Hidden is best placed to advise you in detail. You certainly need a specialist off our list on here or from our charity website. Any new medication will probably cause your INR to move about, so I guess you are injecting Fragmin when it falls to low? Ideally your target for INR will be set with the back up of Fragmin when it falls to low, are you self testing at home? MaryF

mariamoo1 profile image
mariamoo1 in reply toMaryF

No I do not self test at home, I go to the local Gp surgery about twice a week, never see the same nurse, and quite often, and more than, after they dose me on the way out they say, what is your condition again?

Yes you are correct, I have to inject fragmin when too low, and then the nurse puts the walfarin up very high. Then it gets very low and the bleeding.

KellyInTexas profile image
KellyInTexasAdministrator

I have nothing technically useful to add, but I must say APSnotFab does really seem to know her ins and outs in this department. Human Resources is her field of expertise if I’m not mistaken.

What I’d like to offer you is a little hope. I do think you will get this worked out when you get the right doctors on board. There is a proper bridging protocol that Professor Beverley Hunt Goes by Listed at St Thomas Hospital. It is somewhere on this website. Ask APSnotFab where to find it. I think under pinned posts.

Also- have you checked GHIC.world for the list of specialists in your area of the U.K.?

Not what you're looking for?

You may also like...

YET AGAIN INR UP OR DOWN I CANNOT COPE

Yet again INR finger test >8 It’s been another bank holiday weekend here in the UK, got tested at...
mariamoo1 profile image

INR 5.2 and I feel fantastic!

So the INR saga continues. Two weeks ago 3.2. Raised warfarin by 2mg in the week then... last week...
WendyWoo50 profile image

I despair I really do.

Back on the 3rd of Feb I had a third stroke while I had an Inr of 4. They didn't believe I'd had a...
Tucson profile image

iNR

Hi! I first wanted to thank everyone on this forum, for educating me on APS. I had two positive...
Uzoigwe profile image

Fed up

Hi everyone, as you can see from my post above I have had a issue with doctors and been in hospital...
Lmb28 profile image

Moderation team

See all
KellyInTexas profile image
KellyInTexasAdministrator
MaryF profile image
MaryFAdministrator
lupus-support1 profile image
lupus-support1Administrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.