Looking for recommendation on the UK specialists accessible to me

[gazaeee]

Hi all,

Thanks to this group I've been able to locate APS specialists within an hour and a half travel from where I live and was wondering if any of you could recommend any based on your own experience or what you know of them as.

I intend to ask my general practitioner to refer me. In order of closeness to where I live here they are:

HILLINGDON HOSPITAL

Dr Sarah Woodham

HAMMERSMITH HOSPITAL

Dr Deepa Arachchillage

ST MARYS HOSPITAL

Dr Colin Tench

St Marys

UNIVERSITY COLLEGE HOSPITAL

Dr Hanah Cohen

Professor Anisur Rahman

Professor David Isenberg

GUYS AND ST THOMAS HOSPITAL

Professor David D'Cruz

Dr Paul Holmes

Professor Beverley Hunt

Dr Karen Breen

ST BARTS HOSPITAL

Professor Peter McCallum

Dr Laura Green

St Barts

ST GEORGES HOSPITAL

Dr Arvind Kaul

CHURCHILL HOSPITAL

Dr David Keeling

Professor Raashid Luqmani

Dr Sue Pavord

[Lure2]

Before looking for a Specialist - ask for the 2 testresults 12 weeks between the tests (copy) that you have already done and talk to the Doctor who gave you Warfarin. Good if you know if you have got APS or not before looking for a Specialist.

[gazaeee in reply to Lure2]

So ill have to suffer with these symptoms for quite some time because it'll probably take some time to get a second test, then more time to get the results and then time for a referral

I suppose i thought if I trigger the referral now...perhaps ill have results before I meet a specialist.

[Lure2 in reply to gazaeee]

I thought you said you had done a second test and had not had an answer.....? It should be possible to phone even in corona times.

At least you have got a lot of answers now from this forum as we try to help you. You have to decide yourself. Difficult times for everyone.

[gazaeee in reply to Lure2]

They are difficult times

But no I've not had a second test.

[Fra22-57]

Ask your gp for the 2nd test.this needs to be done ideally 12 weeks apart from last ones.with this result of APS then ask for a referral I was diagnosed locally but go locally and to Prof d Cruz clinic yearly.obviously couldn't go this year thou.good luck

[gazaeee in reply to Fra22-57]

I thought GPs couldn't do this sort of test but I suppose all it is they need to do is take blood. In the hospital when they did it they took quite a few viles to check for a load of blood conditions (I think around 9). APS came back positive and another they said was weak positive but they said didn't worry them as that could be normal. Do you know if it's practice to test again for all of them or just those that returned a positive result on the first test?

By the way, what tends to happen at your yearly appointments with your specialist and was the first meeting and different?

Many many thanks

[Fra22-57 in reply to gazaeee]

Not sure about the bloods as local rheumatologist did initially.some one one else on here could advise better.

My first appointment was mind blowing as so different to treatment I get locally.Although they would only liaise with my local rheumatologist with advice .They asked me loads of questions and listened to me .I was,asked to strip down to underwear and was observed and they were most interested in my levido reticularlis .and this was photos in another department. I had MRI result telling me I had lesions on brain which my own rheumatologist said all was clear which wasnt.I had to stand and close eyes and doctor stood in front n and one at back.the rear one caught me as my body fell back.Never been asked to do that before.Blood tests were done and weight height n urine sample taken.Lots of other different tests done and they explained things and told me more than I have ever heard before.Everything was so thorough.I am not saying you get this with everyone and my 3rd n 4th appointment there was not so good as saw other members of his staff.

I travel from.north east to London on trains and stay overnight then go for 2 weeks holiday usually

[gazaeee in reply to Fra22-57]

I'm tempted to bite the bullet and go private for the first couple of consultations... especially if the wait is really long on the NHS. My antocoag clinic don't seem to think having a first positive blood result for APS needs to change their full steam ahead approach for pushing me from bi-weekly checks to once a fortnight to once monthly. They also do not think the therapeutic range of 2.5 needs looking at 'since I've been fine'

This attitudes plays with our lives. It's as if you need to have a serious event to proove the need to change their script.

[Jumper99 in reply to gazaeee]

My GPs tell me they are not allowed to order the APS blood tests to be done, it has to be a consultant. Which is a complete waste of a consultants time, he needs the test results before he can decide on a diagnosis. No wonder the NHS is overloaded in normal times.

But I have found out from friends that it seems to depend on the area you live in. Some GPs are still getting the tests done but it’s not just mine who say they aren’t allowed.

[gazaeee in reply to Jumper99]

A doctor I spoke to at the hospital did say the GP can do it but perhaps like yous aid, it depends on the area :s

[GinaD]

None of us like ambiguity or indecision: especially when our health is concerned! But positive tests for APS can be transient and not indicative that a patient has APS. Maybe somebody sneezed in the grocery aisle ahead of you and the antibodies your body has churned out are, indeed, antiphospholipid in nature. Now there are many stories on this site of patients struggling for a diagnosis. Hematology is complicated. Rheumatology is complicated. Now add these 2 medical disciplines together and you get: OMG! What is causing this and how can we test or treat it! So many blood factors and antibodies interact in so many directions! How do we define " normal" when our biochemistry has yet to understand what an entire " normal" looks like? In so many patients whose genes and environmental factors are all so different? Arrrgh!

This is why most of us on this site stress the importance of consulting a doctor experienced in treating APS.

But yes, the road to diagnosis is often rocky and long. I do not mean yo tell you who or when to see another doc, but merely point out that the 12 week interlude is justified. Except in patients suffering from serious APS caused symptoms!

So go whichever route you are most comfortable.

I seem to remember reading here once a recommendation that those awaiting their 12 week interlude take a baby aspirin a day to ward off clotting. But that was years ago and I am certainly not a doctor. But you might ask your GP if there is anything you might take or do in the meantime.

[Hidden]

I'd go the consultant route, with a specialist if you can, not just the GP. Because, when I had my diagnosis, they did so many blood tests that day, that supported their diagnosis of APS, and to see what else was going on in my body. They also tested me for Lupus and Sjogren's at the same time. And they order MRI scans for my head too. A GP wouldn't do any of this. There's a number of tests they can't run, and wouldn't know how to interpret.

Best to put yourself in the hands of someone experienced in the disease.