Sticky Blood-Hughes Syndrome Support


I had my rheumatology appointment on 1st December and discussed the results of the bloods I had taken three months ago when my GP faxed the consultant about a number of high results that she thought indicated a clotting problem. Eventually it was decided that they would repeat the anti B2Glycoproteins as it was three months since they were taken. I waited another week as instructed and had it taken at the GP surgery. I was told at the hospital that even if it was still high it was unlikely that they would do anything as I had not had a clotting episode of any kind. I asked if I should take an aspirin and was told no.

The results are back and show that there has been no change and they are still high. My GP is going to write and ask him if he should see me earlier or did I need to see a haematologist, which is what they asked for in September when a number of results were found to be high. I have rung the secretary as asked and she is printing off a copy of the results and will show it to one of the doctors. I guess I will have to wait until March, and by then I might have a blood clot to report!

Does anyone else get frustrated and find that the hospital doesn't seem to do anything?

5 Replies

It is Christmas eve and I have just put the big Salmon in the oven so I can try to answer you.

I do not know in what country you live but evidently you have got two positive bloodresults. Then that would point to a diagnose of APS. That is the first thing; to get a diagnose.

The second thing is to have an APS-specialist and as there are so very few doctors and I suppose hospitals also that know what APS is, that can be exstremely difficult sometimes. Probably your Rheumatologist did not know APS so well.

I think you shall try to find a Specialist of APS! I do not understand why you can not have a copy of your bloodresults. I Always ask for that and also the journal of the doctor.

Look at specialist in your area...

Best wishes and Merry Christmas from Kerstin in Stockholm


Thank you for your reply Kersten, you replied also to my last post in September when I had the first results. My GP at that time sent a fax asking if a referral to a haematoligist was appropriate which was ignored. I live in Wales. My GPs are being supportive but I fear they are coming up against a brick wall. Carol


What some people have to do is self refer to London Bridge privately taking all recent blood tests with them! I did, for myself and children, and yes we are all on Aspirin. I put myself on it and then I was told to double the dose...MaryF


Sadly I find most doctors frustrating and unhelpful. It sounds like you have an ally in your GP so cultivate that and see if he can help you navigate the jungle.

I have found that I need to do my own research and keep asking for what I want until I get it. If you can get in to see the specialists at London Bridge as Mary suggested I'd do it. I wish we had something similar here in Australia.


As Mary says either go private to London Bridge or ask your helpful GP to refer you to one of the other recommended specialists on the Hughes website which may be closer to you and within her remit to do that.


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