Hacked off

[amy1808]

Had an appointment yesterday with my local hemotologist , I see pro hay but she still wanted to see me . So anyway off I trots and she asked how I was feeling , explain drew usual symptoms you experience with APS , brain fog etc . Her answer was it's all in my head and I needed counciling 😡. She obviously knows nothing about APS

[MaryF Administrator]

oh dear, I presume the other appointments are better than that! MaryF

[amy1808 in reply to MaryF]

She is retiring thank god Mary

[HollyHeski Administrator in reply to amy1808]

Sounds like she needs to retire - we don't need doctors like that!! You don't need counselling, you know your own body!! Keep trotting along, hopefully the new one will understand better x

[MaryF Administrator in reply to amy1808]

Have you looked on our list for others in your area! to make sure the GP gives you the right one, and maybe one of Professor Hughes' books as a nice retirement gift! MaryF

[Lure2]

Hope you find a Specialist this time!

Are you treated for your symptoms with an anticoagulation-drug? Hope so.

Best wishes you will feel better very soon

Kerstin in Stockholm

[amy1808 in reply to Lure2]

Hi , I'm on Warafrin and clopidogrel , self testing has helped , they still don't understand you still. Can get symptoms when INR is ok . It's so frustrating

[TJSTICKYBLOOD]

If that was me and knowing what I know I would put in a complaint.

[Manofmendip]

Hi

That is awful.

Dave

[Lure2]

Hi Amy,

I know you had a massive bleed on Warfarin. When was that and on what INR were you at that moment.

I know you are still on Warfarin but i read that APsnotFab suggested 1 year ago that you should change to LMW Heparin as the Warfarin did not work even if you were on an INR between 3.0 - 4.0.

You had still ftesting and with the higher INR 3.0 - 4.0. I also read that you wanted to go down to an INR og 2-0 - 3.0 as you had had a bleed. Not a wonder at all.

[Lure2 in reply to Lure2]

That one went away too fast from me....

I just wonder why you have not changed to LMW Heparin as you have so much difficulties to selftest. I wonder also if you are afraid of a bleed (not a wonder at all if so). I am sure the lower INR does not work for you with your symptoms. Also I have understood that you do not have a good Specialist to talk to at the moment.

Why not try LMW Heparin as APsnotFab also suggested once. Hope you will get a better Specialist! Are you primary APS or do you also have other autoimmun illnesses?

Kerstin

[amy1808 in reply to Lure2]

Hi , I think you have me mixed up with someone else . I haven't had a massive bleed whilst on Warafrin x

[Lure2 in reply to amy1808]

Hi, Sorry It seems as I have done an error somewhere. You know I read a lot of info.

But I have now read that APsnotFab suggested you should try Dalteparin (Heparin) one year ago. Also I have noticed your Doctor did not understand what the main problem with Hughes Syndrome was; - too thick blood that has to be thinned at a stable and high INR.

I have read that your therapeutic level is put on an INR of 3.0 -4.0. As you selftest you could try to keep it near 4.0

I have asked you several times if you have done a doublecheque with a vein-test at a well-known lab conta a fingerprick-test with your machine ?

Do you have a difference as you have told me you are Lupus Anticoagulant (correct?) ? There may be differences even with A CoaguChek XS (I use that one) when you are LA.

Try to get a new Specialist and ask for Dalteparin (Heparin) as APsnotFab suggested if Warfarin is too difficult. Important that you are properly anticoagulated as that is the main thing .

Kerstin