Phew, thank you – I’m not mad!
I’m back down in London again. It’s been great to catch up with a few folk and get some appointments made. I had also arranged to see Professor Khamashta at London Bridge Hospital again. It’s been a year since I originally saw him so I thought I would go for a review appointment. I also wanted to ask him about this so called ‘placebo effect’ that I am being told I am having!
Wow, he is so lovely. I had a good chat with him. I explained to him about the haematologist saying that it was a placebo effect making me feel better when I took Fragmin whenever my INR was low.
I gave Professor Khamashta a copy of the record of my INR and symptoms that I have been keeping ever since I started taking Warfarin. He didn’t look at it – he just turned it face down!
Instead, he asked me about my symptoms, how I was managing and what I was doing now. He also wanted to know if I was still experiencing any effects from the stroke. When I had finished telling him all about what I had been experiencing he said, ‘I think, listening to you, that your INR has only been in range for about 10% of the time’.
He then turned over my INR overview, looked through it and said, ‘I told you so. Your warfarin dose is not high enough’.
He went on to explain to me that, yes, whenever I don’t have enough anticoagulant and my INR gets low then I WILL get symptoms. This is normal for people with Antiphospholipid syndrome. Phew! So it’s not just in my head!
What a relief, I thought I was going mad. So effectively I shouldn’t get these symptoms if my INR is in range. Prof Kamashta said he would write a letter to my GP and haematologist to explain all this and that if they have any queries then they should contact him.
So…BOOOOOMMMM!! Prove you wrong! I think I just have…
Not that I am gloating or anything but at least I hope I will be taken a bit more seriously now!
It would be good if this helps others in the same position.
So it’s straight onto Facebook to share this with all the Hughes Syndrome and APS support groups Ha!