Sticky Blood-Hughes Syndrome Support
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Haematologist vs Rheumetologist?

With a cardiologist and a stroke specialist thrown in for good measure too!

I've had a little respite from my myriad of appointments but I'm back at the hospital today for my fourth set of blood tests, and very soon I'll be seeing all my consultants again.

At my last appointment, my stroke consultant is confident I do have APS based on the fact I suffered a TIA (diagnosed on my MRI and the symptoms I presented at A&E with) and that my initial 2 sets of blood tests were mildly positive.

After finally getting my haematology appointment though, he is less convinced I have APS as I'm only mildly positive and questioned whether I had infact suffered a TIA. He's ordered the second set of two blood tests, and as per standard procedure within my NHS trust will refer me to one of the specialist haematology teams in either Manchester or Liverpool for a second opinion.

However I'm wondering if I'd be better off with a Rheumetologist as I know so many of the people on this board think highly of them. What is the actual difference in respect of APS?

I'm currently on warfarin, sitting happily within my theraputic range and feel "well" most of the time with exception of some minor niggles. My stroke consultant (who is my lead consultant) is very reluctant to take me off anti coagulation as he is worried that I got off lightly this time and he doesn't want to see me sat in his clinic having suffered a more serious stroke.

Any thoughts would be greatly appreciated!

3 Replies

Hi there, you have had some sensible and expert diagnosis there, go with the lead consultant and rheumatologist, at times if some staff are not fully clued up on Hughes Syndrome/APS then one weak test will lead them to believe you do not have the disease, which can ebb and flow with test results. You have two out of three on your side here and helping you which is good. MaryF



It sounds to me that you have not yet met an APS-Specialist. A Specialist knows that you must never be taken off Warfarin and sometimes we have tiny clots that are not seen on the usual instruments we have today in hospitals.

As this is a rheumatological illness the Rheumatologist is perhaps the best Doctor to understand this rare illness. I have both a Rheumatologist and a Hematologist. Behing I also have at least 3 other doctors if I need to see them. The APS-Specialist knows what to look for. He can then refer you to the doctor you need to see.

You can even go on having a lot of tiny PEs and afterwards you get the answer as Pulmonel Arterial Hypertension. That is why it is so important to be well and properly anticoagulated as we have too thick and sticky blood.

Get an APS-Specialist! Hope someone else can give you a good name as I live in Stockholm.

Best wishes from Kerstin


Your Stroke Consultant sounds like he is speaking common sense and actually reminds me of mine! They are the ones that have to pick up the pieces when the haematologists of this world decide to stick to diagnostic criteria designed for lab rats!

My advice for what its worth is to find an APS specialist from off the list we supply here, be they from whatever specialty they come from, because they have proven they understand this condition, strike up a good relationship with them and then go from there. All your consultants will fall in line behind them once you have a firm dx from someone and they advise a treatment plan with medication. Also importantly, if you and the APS specialist decide on a course of action (with medication) do not be persuaded to change it by other Consultants who may have their noses put out of joint by you not taking their particular advice! I have had Consultants wave test results in my face, banging their long boney fingers on them and shouting at me "but they are negative". I just calmly reply "so tell me why I had a stroke then"! That normally shuts them up!

Now I don't have this battle because Ive had a positive result and have had two firm dx from respected Consultants, so they don't bother anymore to fight me. You will also get to that position but you may have to be a little patient until then.

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