How many of us have been bouncing aro... - Hughes Syndrome -...

Hughes Syndrome - APS Support
9,498 members9,589 posts

How many of us have been bouncing around between specialists to get a firm diagnosis?


Long story short!

In my journey to diagnosis over the last 2 years I think I have been seen by every department at my hospital!

A year ago I was dx with APS but still not conclusively for SLE (although 8/11 criteria met).

So far I have seen haematology, thrombotology, ENT, maxilofacial, urology, nephrology, rheumatology and a DR at St Thomas'.

The dr at St Thomas's disagreed with the dx of APS based on incomplete and inadequate (&old) CT scan. He told me to stop warfarin and that I had no autoimmune conditions. He wrote a devastating letter to my hospital and told them he was certain there was no significant illness.

Luckily I trusted the thrombo and her reasoning, stayed on the warfarin and when I was back at the thrombo clinic (registrar) they agreed to increase my INR range, and sent me for more investigations for the SLE.

Frustratingly the letter stopped any detailed look into the cause of my +ve ANA and various other SLE symptoms and resulted in all these other drs taking the line of the St Thomas' dr, and then discharged me!

Today I saw the head thrombo again and she is very angry. She double checked the MRI and my bloods with the most senior analysts in the trust and re-confirmed APS. She is writing a letter to counteract the awful one from St Thomas'. I asked for Plaquinel to help with the SLE symptoms plus the APS ones and unfortunately she cannot prescribe this as I need it from a rheumy! She suggests I push for more appts with rheumy once her letter is out and ask them for it.

So now the question is - who is in charge of my care? I am utterly sick of chasing the dx for the other condition(s) I have. I really want a trial of Plaquinel, and the last rheumy I saw agreed a trial of it was unlikely to do any harm, but said I must ask thrombo for it!

Luckily the thrombo empathised and knows how it can make you question your sanity when being told that there is nothing wrong when there clearly is. Empathy is great. But now I need to get some help!

16 Replies

Hi sorry about your dire care to date, thankfully you have somebody on side, sometimes it can be worse, with nobody in the picture, of course there is our list of specialists across the UK on the charity website. Can you please private message me the name of the doctor who has been undermining your diagnosis. Would your GP re refer you somewhere to somebody off the list? or would your Haematologist write a strong letter of support regarding your trial of Plaquenil etc. Otherwise you will have to consider going privately to London Bridge to get things back on track. MaryF

Thanks Mary. Am on my phone and cantseem to PM you. But I have told you the name of this dr at St Ts - he has now left. I am really really happy that the thrombotologist was confident in her diagnosis, but went back to check with my records and notes to be 100% confident.

I had almost got to the point of believing I had lost the plot. My mum offered to pay for me to go to LB, but because therr were so many people involved there always seemed to be a reason to put off booking with LB as it was only a few days til the next specialist might do something for me! I really think I need to get there, but am struggling with my conscience and finances to go private.

That, and the risk (in the devil on my shoulder) of being told it was all in mind!

Im happier today that it is real and not imagined. The call will have to be made on Monday.

Hidden in reply to Bonnie39

"But I have told you the name of this dr at St Ts - he has now left. I am really really happy that the thrombotologist was confident in her diagnosis, but went back to check with my records and notes to be 100% confident."

GOOD, that a man like this has left!! Hope you complained about his conduct.

My question would be, why your doctor cannot confirm the diagnosis of APS (if not Lupus)?


overnighthearingloss in reply to Hidden

I don't know who you are referring to ....

But just as matter cannot be destroyed, it just reappears elsewhere, maybe in a different form, the same will undoubtedly happen here.

I hope learning occurs along the way

Manofmendip in reply to Bonnie39

Hello Bonnie

My colleagues Mary & Kerstin have given you some good advice.

I am one of those who was diagnosed on the NHS but had to see Prof Hughes, privately, to get a sensible treatment regime in place. I am now looked after by the team at the Royal National Hospital for Rheumatic Diseases in Bath, where we have also set up APS South West, a patients' support group that meets 4 times a year.

Keep us informed on your progress.

Best wishes.


MaryFAdministrator in reply to Bonnie39

Ah yes, sorry, believe it or not I am private messaged on here by so many people with similar stories, which of course is wrong. If you do decide on the LB route, just make sure you get your blood tests done well in advance by GP, and get them to add in Thyroid, d, iron and b, as well as the panel of bloods for Lupus and Hughes, which of course your Haematologist would do probably also, this is what costs the money the tests. MaryF

I feel that being a patient can often be equated to being on some sort of a production line. It can often feel as if you are no more than a number, and as such, up for sorting into whatever set is the order of the day.

Sometimes it depends on symptoms that are evident at the time. Sometimes it depends on the hospital you attend or the doctor you see.

My local hospital, bless 'em, have given me 2 hospital numbers. One by the anti coag team I see and then another that gets referred to at every emergency. I highlighted this issue a while back and was informed that the 2 numbers should now be linked. But recently I was unwell at a time that I knew my INR was low. I attended A&E to get checked out and the doctor there had no knowledge that I had been treated for APS for 4 years and was cared for by the anti coag team at the same hospital. Really confidence inspiring.

However, you dont really know just what is written in your medical file unless you apply for a copy. If details have been incorrectly recorded or are incorrectly interpreted you will undoubtedly have a difficult time.

I do agree!


Hi Bonnie39,

What a journey you have made. Horrible it must have been.

What I can understand you have APS and you are still on warfarin. Does it help with your APS?

Do you want plaquenil for your SLE (Lupus)? But they have not diagnosed you for it? If you try Plaquenil do you have to stop the warfarin?

I know from own experiance that SLE is very difficult to dx. I have been told that i can have parts of it. I have no pain and warfarin has worked so far so I do nothing more just now.

I do hope you will have your problems solved.

Best wishes from Kerstin in Stockholm

Thanks both. Yes the warfarin has helped and taken care of some symptoms but not all. Plaquinel could be in addition to warfarin and I understand it can also ease symptoms of both conditions. APS was confirmed, then queried, now re-confirmed. +ve ANA and other factors are evidence of SLE and there is some evidence of lupus nephritis. Because a dr who I have no faith in from St Thomas' discharged me and told me everyone else was wrong, the letter from him is in my file and no one apart from the thrombo who double checked and rediagnosed will look at the evidence before them.

I don't mind the checking for thoroughness sake, but seem to be bouncing between departments and opinions. I just wish someone would take a holistic approach for me.


I think that's a huge risk to take when you see another doctor..Not everyone has a holistic approach ..particularly, run of the mill doctors don't even know the meaning of it.

Haha Mary! I'll bet you get hundreds of messages. It's your fault for being so helpful! ;-) X

I am thinking I will wait for my letter from my thrombo before I write and complain about my treatment at StTs. If thr letter is half as forthright as she was in ky appointment it will say it all far more than I will!

MaryFAdministrator in reply to Bonnie39

NHS Choices allows you to fill out a profile and comment on services, in the main I give praise where praise is due, I wish people would a) be positive and give good feedback if appropriate, and b) give feedback if care is not good. The CQC do read them, apparently. MaryFx


Try this independent site to add detailed complaints:

You may also like...