Sticky Blood-Hughes Syndrome Support
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Preparing to see my Rheuatologist (Friday 27 January)

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 💋

5 Replies

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

1 like

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!



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


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I would ask them to do, in addition to the Vit D, B12 and ferritin, a full thyroid profile which is FT3, FT4, and both thyroid antibodies.

Once you have the results let us know what they are along with the reference ranges so we can let you know what we think if we can.

1 like

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


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