Preparing to see my Rheuatologist (Friday 27 January)

[WendyWoo50]

I have gained a lot of helpful advice from friends on this site and I thank you all. You have helped me through a few very difficult weeks (horrendous headache for 26 days)

I am preparing for a visit to my rheumatologist on Friday and would be very grateful for any information that you feel would be helpful. I have cut and paste a lot of information from Professor Hughes blogs. I have plotted graphs of my I N R and I have listed my symptoms on a body outline.

My target INR is three. Which I do not think is anywhere near high enough. It is very on stable even though I am taking 20 mg of warfarin daily I struggle to hit three.

What I am looking for now is clarification on blood tests and levels. I have heard a lot about vitamin d and have understood now that Professor Hughes likes it to be about 100. Many people on here talk about vitamin b12 could you please shed any light on levels . And please can you let me know of any other relevant blood tests that would help me as my I N R is very unstable and I am feeling extremely ill.

Thank you once again for all your help 💋

[MaryF Administrator]

HI, your

consultant will do a B12 test for you, and yes Professor Hughes suggest that 75 is a good result for vitamin D levels, mine is around 100 apparently. Also the consultant can check you iron. I am led to believe that if somebody is supplementing with B12 it needs a gap of 4 months before testing! So a good idea to test before you start down that route if you do. Also hopefully the Rheumatologist you are seeing is up to date with Hughes Syndrome/APS so you can discuss your INR and Warfarin or some alternative. Let us know how it goes. MaryF

[Lure2]

I agree with MaryF!

I really hope that your Rheumatologist is specialized in autoimmun illnesses. This is so important because he/she knows what blood-tests you need and also to get your anticoagulation in range.

When you get your anticoagulation properly treated you will feel much better.

I wish you very Good Luck on Friday!

Kerstin

[Manofmendip]

Good luck Wendy. let us know how you get on.

I hope you don't mind but I edited a typo in your post from 'die' to 'site'. lol

Dave

[WendyWoo50]

Thank u. I do appreciate all the support. I will print off this. X