At last I have my letter from Professor Khamashta explaining that I will get symptoms when my INR is low. So I have it confirmed - it is normal to get APS symptoms when INR is low! So I took it into the docs today. He is happy to work with this and increase my warfarin next time my bloods are due. Professor Khamashta also said in his letter that he recommends that I should be self-checking and dosing. While I would love to be able to self-check my INR I am not so sure I would want to be self-dosing. I would rather try and balance my INR through food.
So, the doc says to speak to haematology about self checking at my appointment later on today.
I gave the haematologist my letter from Professor Khamashta. Not exactly sure how it was received and I didn’t get any recognition of the fact that I get symptoms when my INR is low. We did go on to have a discussion about self-checking and dosing. His standpoint was all about the costs, legalities and responsibilities. He explained it’s not that simple because someone has to be employed specifically to monitor the self checking machines and the dosing. The machines must be calibrated and the costs spiral out of control. Particularly when you consider that they have a service at the hospital which tests the blood samples every day.
?
What the heck. I’m not going to get deeper into a discussion where there is clearly no room for manoeuvre. Especially as I don’t really have a desire to self-dose anyway. It’s going to be a political battle on who would pay for this service – the doctor or the hospital. As a business woman, I see the huge advantage financially in self-checking. Self-dosing can be open to more litigation though. Self- checking would help me when I am travelling but now that I know the symptoms I get when my INR is low then I have an internal check to alert me. I am really happy about this because not everyone gets symptoms to alert them when they are more at risk of clots.
Well, at least my own doctor is now on board with supporting me so that’s great. He did explain that not everyone in the surgery may be aware that some people need to have a higher therapeutic range than the normal 2-3. He said that if my INR results were low but my warfarin dose had not been increased that I was to feel free to question this. I agreed to take some of the responsibility for this and not just accept a dosage if I felt it was incorrect. I do feel that the surgery should be responsible too and should ensure that all the doctors who do the dosing of the blood results are aware of this.