I am supposed to have my INR level checked regularly but because of the weather it was not done in February. INR measures how sticky the blood is, the higher the number the less sticky the blood. The specialist set my level at 2-3 which is normal for people with APS to start with. However many end up with 3-4 as their range.

I was not feeling very good about 3 weeks ago and also splinter haemorrhages had appeared under my finger nails. These look like splinters and are blood clots in the capillaries. My gp eventually agreed to me having a blood test done to check my INR. This took nearly a week for me to get my results and was the start of the problems I have had.

My INR was 2.7 which is within the range set by the specialist. But I wanted the range to be higher as I was feeling a lot of my symptoms coming back. The gp surgery gave me a message that I needed to get the anti coagulation clinic to change the range. I rang them, not expecting much as they thought that I needed to get my gp to prescribe antibiotics to sort out the splinter haemorrhages. They said they could not do anything but that I needed to go to my specialist. I rang and spoke to his secretary and she said she would talk to him. Almost two weeks later I had not heard back from my specialist so I rang and left an answer phone message.

A couple of days later I was due at the anticoagulation clinic so I rang the specialist’s secretary again. She then told me that I needed to get my gp to write as she deals with gp letters much faster than patients requests.

I made an appointment to see my gp on Monday (in two days) but today my record book came back in the post. The anticoagulation clinic takes your book when they do venous bloods and then post it back when they have your INR results. I was shocked to see that whilst I have been trying to arrange for my level to be raised my INR has gone down to 1.9. According to what my gp told me recently 2 is normal for people not taking warfarin. But what really shocked me is that the clinic has said to stay on 5 mg of warfarin and they will see me in 8 weeks. Now I am not a trained doctor but would logic not say that if you have gone below your set range that you need to have your med dose raised? Also would logic not say that for someone who’s INR has been dropping and is now below the range set 8 weeks is too long to leave until the next appointment?

I am now wondering if I should ask to change clinics because I do not feel safe with the one I have been attending.