Thrombophilia clinic

[Nanny-shark]

Please has anyone been to a thrombophilia clinic and can explain what the clinic is all about, what they do there or what questions they ask you and what the outcome usually is as I have never been to one of these clinics and bit worried about what it is all about. Can anyone help please? Many thanks. Hilary

[KellyInTexas Administrator]

Hello Hilary.

I think it’s really a very long word that should make you feel more at ease. ( the chairs will be more comfortable, and the phlebotomists will be very skilled! )

Technically/ linguistically : love of clotting

It will mean for you that instead on only one physician within a group who may have a little bit of knowledge ( which can be the same as almost no knowledge) , you should now be with a physician, or more than one plus a team of medics / para support who are specially trained in dealing with clotting disorders.

Seeing / preparing to see a doctor here should be the same as any other specialist.

I don’t know which doctor you are scheduled to see, but is is still very important that they are very knowledgeable about APS in particular, as APS is is own particular brand of clotting apart from other clotting disorders.

Others will come on here I’m sure with less general info and more specific details.

[Nickisax]

Hi Nanny Shark. I didn’t get to go to a thrombophilia clinic until about 15 years after my first stroke and I was so relieved to make contact with them as finally I had someone local who knew about the condition and could advise on blood thinners. The first time I went I just had a blood test and a chat with the doctor. She asked me to come back ASAP to have my self testing machine callibrated. This was the first time somebody had got involved in my self testing since I started 10 years earlier. After the initial appointment I just had to go back for yearly check ups or when anything changed. Two years ago I have my 5th stroke and they called me in very quickly to change my warfarin to Clexane.

I really like having someone local who knows about me and my condition so don’t be worried just go and embrace any help you can get

Regards

Nicki

[Lure2 in reply to Nickisax]

Hi Nickisax,

As you selftested for 10 years and then had a Stroke and they changed to Clexane, I wonder why your Specialist of APS changed to Clexane as your new anticoagulation-drug?

Was it long ago you got your diagnose of APS?

[Nickisax in reply to Lure2]

Hi

I was diagnosed in 2005 2 years after my first stroke. I stayed in warfarin until 2 years ago although I suffered 3.more strokes and Many tias whilst on it. When I had the last stroke on it it was the new Haematologist who changed me to Clexaine. She said that the new anti coagulants were problematic with APS patients and obviously warfarin wasn’t stopping me having strokes so it was Clexaine. I have had another stroke whilst on Clexaine but my specialist at St Thomas’ said to stay on it

Nicki

[Lure2 in reply to Nickisax]

I am not a doctor but have experiences with Warfarin and have read about APS. You should not have Strokes when on anticoagulation for APS!

What did your Specialist at St Thomas say when you also had another stroke on Clexane? No change at all?

[Nickisax in reply to Lure2]

Sadly I am one of the anomalies. Except for the first two all my strokes (5) and tias (over 40) have been whilst I was on anti coagulation. I recently saw my specialist at St Thomas’s who said to stay on the Clexaine. I am seeing my haematologist soon so I’ll see what she says.

I think that although the drugs do not fully prevent me from having strokes and tias they probably prevent me from having more debilitating ones.

[Lure2 in reply to Nickisax]

You should not have TIAs and strokes. It has to do with our too thick blood that we must thin. I think TIAs and strokes are serious symptoms indeed!

Clexane is an anticoagulation drug like Fragmin and I guess you take it by injections. Warfarin is normally the best choise if we can tolerate and manage it.

Is your Hematologist knowledable of APS and also at St Thomas hospital?

[Lure2 in reply to Lure2]

You have got a very good answer from HollyHeski!

Warfarin can be difficult to handle if we are triplepositive and especially with Lupus Anticoagulant. She has also got Aspirin and Clopidogrel together with the Clexane. I am also triplepositive with high titres, included Lupus Anticoagulant, but with very good help from my Hematologist and the anticoagulation clinic I have managed to stay on Warfarin as I selftest rather often to be able to keep a stable INR.

We are all different but we all need to thin our blood and therefor it is so important to have a Specialist who works with patiens like us daily who understands these things. You will be ok, you will see.

[HollyHeski Administrator in reply to Nickisax]

Hi Nicki, your not alone, I was only on warfarin for 3 mths, admitted twice for suspected bleeds and during this time also had over 40 TIAs, also had 2 arteries stenosed!

I've been on clexane since, along side 2 anti platelets, aspirin & clopidogrel. (With a temporary trial on rivaroxaban).

I'm back on all 3 now, and have learnt that warfarin can be difficult to stabilise when triple positive.

Saying all this, the key is a good APS specialist that can tailor our treatment to each individual.

[HollyHeski Administrator]

As long as the clinic are guided by your APS specialist, your visit should go smoothly.

Any worries or questions, write them down and make sure you ask them.

The key to warfarin is a stable diet, eating the same amount of green vegetables daily.

Take your wonderful supportive husband shark with you.