Angry with St Thomas's: So as some of... - Sticky Blood-Hugh...

Sticky Blood-Hughes Syndrome Support
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Angry with St Thomas's

So as some of you may recall, I had a visit back to St Thomas's just before Christmas after being discharged years ago asking them for help with my digestive woes and various other complaints. I was told I was in the wrong department and that I could not be helped with APS there. Many of you responded. I was going to complain re the wasted day in London but as I was so worried about my being taken off warfarin I kept quiet. Today I received a copy of a letter that went to my GP from the said Dr stating that in his own opinion I should not be on Warfarin and he has referred me to a haematologist at St Thomas's. I was put on warfarin by Prof Hughes himself. I cannot function off of it.

The letter explains why he has come to the conclusion he has, correctly stating that I do not test positive to anything. He notes I complain of various digestive problems and gives quite an argument to back himself up mostly regarding blood tests with negative results. He feels the clot I had for no reason could be for a number of other reasons. He does not mention I have a gallbladder polyp and he has failed to mention there is a very strong family history of clotting and auto immune all of which I told him. Luckily I took a witness. I am furious at the moment and will be raising this with my GP and Rheumatologist. I don't know what will happen next but I will not be going back there ever again. My husband thinks this is what they want ! You were all so supportive before and I wanted to let you know what is happening there.

Be aware not to go there if you have APS diagnosis only. This Dr does not agree with Prof Hughes and never has.

Kaz

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I do remember this rather arrogant and disrespectful doctor. I think you should complain to PALS because if he is doing this to you, he will be doing this to others. It is unacceptable and unprofessional for a doctor to speak about Dr Graham RV Hughes in the way he does to patients - I would also include this in any complaint. Dr Hughes has just received another award from a Middle East country, which adds to his numerous international awards. What "awards" does this doctor have? Probably no more than a Bachelor of Medicine/Bachelor of Surgery (MB BS) ie an undergraduate double degree, but a huge amount of arrogance, a failure in empathy combined with an ego the size of a football pitch!

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Hi, I dont blame you for being angry.

I have read all your previous posts and agree with you totally.

Regarding what to do now - I think a complaint is due to St Thomas's and a visit to London Bridge?

On your previous posts Stickybloodmentor and MaryF have said it all?

Did you get your B12 tested? I cant see from your previous posts.

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No B12 tests yet but I asked my GP and he said it was well within range and always has been.

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The NHS test it not great, I would order an 'Active B12 test' and also look at your folate levels. MaryF

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It seems you were treated with Warfarin and really felt that you benefited from it. Research changes protocol all the time. I think the doctor was giving you his honest opinion. Certainly you should complain about the manner in which you were treated. But he has referred you to a hematologist, so he clearly wants another opinion. Doctors have to take the risk of being on Warfarin in any disease very seriously. I just read brain hemorrhage is the leading cause of death in APS. I will try to find the article if you are interest. But I hope this puts into perspective why this rheumatologist wants to re-consider anticoagulants with you. As you say, he backed his opinion up and told the GP his reasoning. You may want to get another opinion with an APS specialist. K

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The trouble is that the letter he sent is not accurate. He failed to mention my memory came back after starting Warfarin, my family history is full of auto immune disease and blood clots. Mother, aunts, uncles all on one side of the family. I have lesions on the frontal brain area etc. He is basing his opinion only on blood tests being negative. I am not seeing the Haematologist as there is no point. I cannot function off of warfarin and want to stay on it. I had a procedure last year and had to come off and literally could not function. I told him all of this and he has sent a heavily weighted letter all about my blood tests and left out all that I told him which I believe is irresponsible.

Thank you for replying.

Kaz

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It will be good to find an APS specialist who will take all of your symptoms and history into account. You are in a tough situation. Can your GP prescribe the Warfarin? Hope it gets resolved. K

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Thanks Kay. My Doc cannot prescribe without the permission of a specialist. I will battle on.

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I would certainly be interested in reading that article. As I have posted before, in all my years hanging out at this site I have rarely -- if ever -- read of soemone having a life threatening bleed.

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I have Gina! (There always has to be one doesn't there!!! :D !!!) I was in ICU for three months in an induced coma due to internal hemorrhaging. This is when they found out that I have a very serious allergy to Anti inflammatories and aspirin. To top off the cherry on the cake whilst in my coma I developed a clot in my leg. Which they treated successfully. Then I went and got another one in the same leg. This time it traveled up to my lungs, a PE. That was all back in 1989 when I had the good fortune to meet Professor Hughes for the first time and was diagnosed with APS. The rest is history as they say. 30 years on, various strokes, a heart attack, 2 separate episodes of CAPS, DVTs etc and I'm still here to tell the tale. Life's not all bad really is it? :)

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And your still here to tell the tale......bless you.

What a battle it is for some of us to get the correct treatment and what ignorance there is about the disease.

I hope your keeping stable and your story pushes veganworld to seek a firm diagnosis. I myself am feeling a little anxious I have been referred to a haematologist at St Thomas's myself.

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Hello

If I was you I would be getting an appointment with my GP today to discuss this letter. I’d be stating that you will not come off warfarin as you were diagnosed by the top specialist of the condition. Your gp May agree and just continue to prescribe as normal, which is great. However if he/she refuses then I’d point out that if anything untoward happens to you you would hold them responsible for not listening to the instructions of Prof Hughes.

If your GP is decent and has been prescribing the warfarin for years I can’t imagine they would jump at removing the drug on the back of this letter immediately. You have a right to refuse seeing another Dr and just say you want to continue as you are. However, getting on board with a haematologist who understands the condition may be in your benefit. The issue is finding one who doesn’t agree with the Dr you’ve just seen.

Good luck and keep us updated.

Kelly 🇬🇧

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Thank you Kelly. The biggest problem is that the Doctor is in the very hospital and department that discovered APS and where Prof Hughes worked. It would be easier if he was a rogue Doctor elsewhere. As he is from the same place they may listen to him more, it gives him a little more power in a way. I will fight it. I guess if I tried to Sue him if the worst happens he will just go back to his native Italy so he probably doesn't worry about sticking his neck out.

Kaz

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I'm so sorry for what you've been put through by this doctor.

This seems to be a bit of a pattern at St Thomas Hospital. I have had a horrendous time at Guy's and St Thomas hospital too because they were diagnosing APS based solely on blood test results.

Like you they disregarded my extensive clotting history, the fact that I have every clinical symptom of APS and the fact that there are multiple autoimmune illnesses and clotting events within my family on one side only, one of which resulted in death aged just 15!

Have you asked to see your actual blood test results?

I was told that mine were negative too, when in actual fact I had tested positive for three of the APS blood tests.

I persevered and finally got my APS diagnosis from Professor D'Cruz in August 2018, which was not before time given that my first medically confirmed clotting event was in 2005.

The CQC are following my complaint because they are so appalled by the treatment I received at St Thomas Hospital. If the CQC see a pattern, as in certain departments receiving multiple complaints, then they will go in and investigate that department.

Like you I was expecting to receive excellent treatment from a London based hospital, unfortunately this was not the case where two departments are concerned.

I still go there because I have a lovely respiratory doctor at the Lane Fox Unit and I'm sure there are other wonderful doctors who work there too. If we don't stand up and complain about the poor treatment we receive, then changes will not be made in that department and even more patients will be receiving poor treatment.

I'm planning to move my Heamatology care to a different hospital, as despite receiving my APS diagnosis in August last year from a consultant at the same hospital, my APS diagnosis has still not been added to my Heamatology clinical notes.

I'm going to St Thomas Hospital today and I'm dreading the appointment. My sister is coming with me as a witness but should we really have to make sure we have witnesses with us, in order to be treated correctly?

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I'm there and seeing professor hunt she was considering taking me off warfarin and said it's the meds I'm on that gives my symptoms which is a load of rubbish I can't cope without it and she hadn't even taken bloods at that point. I'm going back Feb to see what she says just not looking forward to it. I've had problems with warfarin but she wanted no meds and I'm so I'll without something and I told her this but wouldn't listen I hope I haven't done the wrong thing by asking for her

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Can't see what else you could do. Is London the only place you are seen ?

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I've been seen locally but she didn't know much. Just reading all the trouble with st Thomas just hoping it's not the wrong decision and I've screwed myself over if you know what I mean

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Be careful Ash ...

I can only tell of my experience that has changed to how it used to be. Good luck

Kaz

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Did you see Prof Hunt today?

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No I saw.her in December she's really intimidating hoping these blood tests show the same thing here did and not stop all treatment otherwise I.will go to pals she's meant to be the best in her field other than Hughes so we shall see

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Seeing her again in Feb 7th

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I am seeing her Feb 6th too! We should say hi to each other

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I'm going Feb 7th other wise yes lol

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During my fight to get an APS diagnosis, I didn't mention the name of heamatologist at St Thomas's Hospital, who had treated me so badly because I didn't want to influence anyone's response, as I know many patients hold Prof Hunt in high regard.

Now that other members are experiencing very negative and upsetting experiences with Prof Hunt, I feel able to share my bad experiences and be honest about how terribly she treated me.

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So sorry she treated you this way. She doesn't come across as the nicest of people like I said she scared the life out of me. I'm praying she helps me if not not a lot I can do other than a complaint

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I am really sorry to read about this from her. A doctor is in a position of authority and power. The patient is vulnerable and has no power. The patient goes to a doctor for their help.

The doctor has a duty of care.

The doctor has an ethical responsibility and duty of care.

Intimidation is not a qualification, but an abuse.

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Thank you for responding and for understanding.

It was devastating if I'm honest, the entire admission for my IVC Filter Removal was a disaster from start to finish and also one of the most traumatic experiences I have ever had where my health care is concerned.

This is why the CQC are following my complaint, they were so appalled when I told them how I had been treated. I would encourage anyone who has received abusive or negligent treatment to contact the CQC and tell them about your experience.

They cannot get directly involved in your complaint process but the simple fact that the CQC are following a complaint, often ensures that your complaint is handled correctly.

Also, if the CQC find that they are hearing about a number of complaints regarding the same department/ward/hospital etc, then they may decide that they need to take some action.

I would also suggest if making an NHS complaint, that you should request copies of your hospital records and test results etc, via the Freedom of Information Act, you usually have to contact the Information Governance department to do this.

I would like to say here, that at the other end of the spectrum, I have also received excellent treatment via the NHS. There are wonderful doctors and nurses out there and whenever I have received great treatment, I always make a point of contacting the hospital and leaving positive feedback. 👍

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So well said, Claire.

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Well said xx I agree this all needs looking at. They are undermining all Prof Hughes lifetime of work and dedication. I am right behind you on this.

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I can assure you that no turf wars, politics, or financial strains in one London hospital can undermine Professor Hughes’ work. His discovery of the anti-cardiolipin antibody in lupus patients was ground-breaking. Many lives are saved because of the discovery and the associations of this antibody to clot formation. When I was young, there was not even a standardized lab test. My doctor sent my blood to the lab of researcher (one who I think had worked with Graham Hughes in the U.S.) to get the test. Later they learned patients who did not have lupus were positive for these antibodies. The interest in the area is huge — research is going on all over the world. That is a great doctor’s legacy.

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Well said xx

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Kay it may be his legacy and we know here that it is, unfortunately there are many, especially in your neck of the woods who constantly deny this took place, credit the discovery to somebody else and want to rewrite the history books!

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That is interesting. It is still called Hughes syndrome at times, and the history is often repeated in the American literature. My own rheumatologist has gone to hear him speak. I guess it could be the case that young researchers and doctors would not necessarily be focused on the discovery at this point. Whoever discovered the AIDS virus was immensely important, but after, that the research continued in many directions all over the world. I think the doctors who make major advances know who they are. When you have a syndrome named after you, you are pretty big.

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Ah but they don't even want to recognise the fact that he has had a syndrome named after him! Thats the problem. Many Doctors will arrogantly say "Hughes Syndrome, whats that? I only know of Antiphospholipid Syndrome (APS)." One charity even changed their name to have the Hughes Syndrome taken off because they said it needed to reflect on the medical terminology the condition was known as!

It is only the arrogant and jealous who say that medical eponyms should not be used. If they discovered something they would be the first to change their minds on that one!

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Had no idea the amount of politics involved. That is unfortunate.

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What I can’t understand, is how a Doctor, who is so openly saying such disparaging things about Prof Hughes and his theories on APS, is also working with him at London Bridge Hospital! If he hated his training with him so much, why is he continuing to work in the same place as him and have his name put as an APS specialist on the GHIC website!! All this doesn’t make sense to me especially publically discrediting his boss.

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I do think it means he « hated his training » at all. Although I agree that it is highly unprofessional to criticize a doctor in front of patients, doctors disagree with senior doctors all the time. This rheumatologist may have learned a lot about many rheumatologic conditions under Professor Hughes. He is just saying he does not agree with one particular aspect of his APS approach. Professor Hughes, I believe, was also a lupus expert. In order for APS to be taken from Rheumatology, that would have to involved the heads of departments. I have searched and I do not see that happening yet elsewhere in the U.S.

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Interesting, thanks Kay.

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Professor Hughes would no longer be his boss unless he is the chair of rheumatology. It sounds like that hospital has a very large rheumatology department. It would be interesting to know why they took APS out from rheumatology and put it under hematology. I am just guessing but, hearing the account of what took place at that consultation, there could be a conflict at high levels.

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Yes you are probably right. Something has happened.

Kaz

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I think it's also because the Rheumatology and Lupus Clinic can't cope with the patients they already have, so are putting patients with APS over to Heamatology.

Trouble is that the Heamatology department also can't cope with amount of patients they have either, can't win!! 😵

I think you're also correct about the conflict at higher levels too unfortunately 😕

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I have just spoken with my GP. His view is that there are often disagreements in the medical world. There are two valid arguments being put forward that contradict. He asked me if I knew the pro's and cons of each argument and I told him and he was happy I understood. He then said that I should have the final decision. I am well informed and it is my body and life. In a time when the government and NHS are asking us to be more proactive in taking responsibility for our own well being (diet nutrition exercise) it is only right I should have a say. I offered to sign something that I would not hold anyone responsible if I had a bleed. At this point he didn't think it was necessary. So at the moment I will keep away from St Thomas's and carry on as I am. Shame as they always had my back in the past. It has opened up a discussion in my head that he may have a point but as I cannot function or even remember anything down to my nieces and nephews names when I am off Warfarin, plus headaches etc. Quality of life has to be taken into account as well. I still back Prof Hughes in this battle.

Kaz

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Well your GP gets a gold star! Fantastic that he accepts its your body therefore you get to decide.

I met no real resistance today from the Heamatologist I spoke with, Dr Doyle, which was a refreshing change.

I also met Dr Breen for the first time and we had a discussion about what went so horribly wrong re my pre and post op care back in November 2017.

I told her that ultimately I hold Prof Hunt responsible because she visited me on the ward and therefore could have made a proper diagnosis, rather than deciding that I didn't have APS based on blood tests alone.

Having met Dr Breen, I would recommend her, as she has a lovely demeanour and seems to be willing to listen to her patients. Ultimately however Prof Hunt is in charge and she seems to be making some major changes the goal posts where the treatment of APS concerned. 😱

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This is who I'm seeing and now I'm dreading what I've done. She scared the life out of me. I went to her as recommended by some people here who have prof hunt and they were pleased with her but reading all this I'm wondering what she will say. She took 15 viles of blood and I know o have anti bodies still just She is arguing if it's the syndrome as not had clots but have every other symptoms. She wants to tempt fate with taking.me off it until I have one if that's the case then there will be one hell of a complaint!

She is meant to be an aps specialist but doesn't seem keen on treating or diagnosing people with it I just don't understand

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I know, it's so utterly confusing. I was so pleased when I got my first appointment at the St Thomas Thrombosis Team back in 2017 because I'd been told how great they were and had been assured that they would be able to treat my clotting issues.

Instead I was dismissed and belittled and told my bloods were negative for APS. 😱

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With an clot catcher full of clots, none the less

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Yep!! 😵

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Have you ever thought of calling the chair of rheumatology to get an explanation? I do not think it is unreasonable to ask why your treatment is now in a different department and why recommendations are different. Also, I think the chairs of rheumatology and hematology should know that patients like veganworld are going to the Rheumatology clinic and not being informed of the change. That means this transition was handled very poorly. K

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It was the hospital appointment system really. I was booked in at the wrong place according to said doctor. I just turned up, however I did verify the day before by phone that it was correct as it was at the other hospital i.e. Guys and not St Thomas's even though they are of one. I didn't want a wasted journey as I travelled a long way. Still had a wasted journey though.

They need to sort it all out.

Kaz

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I see. But all the patients should have been notified in writing, I would think. Very unfortunate experience for you.

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Kay you do not understand the British system or the politics of this department and the history that goes with it Im afraid. Again you are trying to defend a Doctor from a position of ignorance which in this case is not helpful.

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It seems to me I was only saying what veganworld’s later explained to her. You don’t have to know the politics of a system to know that good doctors can disagree. Now she can make an informed opinion. Sorry if you found my comments unhelpful.

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I meant to say what veganworld’s GP later explained to her

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Money, Money, Money! They tried to do it about 5 years ago by discharging patients back to their GP's. GP's who had no knowledge of the disease and patients who were not stable enough to be discharged out of specialist care. There were patients that were clotting on their way home from the hospital due to the fact that they were having medication stopped and were being de-diagnosed. Why you may ask. Because when a patient is first referred to a specialist centre like St Thomas, the hospital gets a fee. If the patient then keeps going back the fee the hospital gets is less, which means the hospital is doing the same amount of work for less money. Therefore there is less incentive to keep seeing the same patients and more incentive to see new ones.

When hospitals are under budgetary restraints they will look for all ways to save money. It does not surprise me that what happened 5 years ago is now raising its head again, albeit in a slightly different way. Bottom line the Lupus Clinic is obviously trying to lose patients but they they need to follow the guidelines which says that any changes in a patients treatment pathway must be discussed and agreed with the patient.

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Makes sense. You are correct, then, that I am unfamiliar with how the UK system affects care. I think it may work differently here. My experience working in an academic medical center is that the departments wanted to keep patients for the status and to build numbers. I think Rheumatology departments here would likely fight to maintain their APS patients but that is just a guess after seeing how doctors did not like giving up anyone they saw as their patients.

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You don't have an NHS. You have a system that is based on insurance. With the NHS its supposed to be free at the point of care. Due to budget cost cutting and the way that the system was changed around 5 years ago when local medical services, run by something called PCT's were scrapped and replacement organisations called CCG's brought in, (that were supposed to give the patient more choice), it meant that GP's and local funding is now dictating more and more what treatment & medications are allowed. NICE, which is the umbrella organisation who approves treatments and medications nationally, is then over ridden by local CCG's who decide that they don't want to adopt their recommendations. In amongst all of that is NHS England and so much bureaucratic red tape, its a wonder that anyone gets any treatment at all. If they cut out all the people who sat on all the committees and wrote all the governance guidelines and opinions, there would be a lot more money left for what matters - drugs and treatment!

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Lynn, not wanting to sound very negative here but this is the exact and only reason I do not fund raise for GHIC. I know which Dr this thread is about and I have seen him personally and was left in floods of tears afterwards. I was appalled when I saw his name on the list of specialists and felt politics is more at play than patient health.

I know a lot of work has gone into GHIC and I am sure they will continue to do great work but as long as this Dr is affiliated I can not support it personally.I would hate any other patient to trust in the list of Drs and choose to see him on the back of it as they may get a very different opinion than expected.

I'm only glad I had the strength to continue my fight and find my (our) wonderful neurologist!

On a positive note, this forum is an excellent source of knowledge and hopefully we can guide each other to the right Drs and be here to offer support to each other when needed.

Kelly x

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Hi Kelly. Yes I remember that incident and if you remember it was me that was instrumental in getting you seen by Prof Hughes afterwards. I discussed this incident with him and it was my understanding that he was going to have discussions with the Dr concerned.

The only reason that his name appears on the GHIC website was because I was asked to put it on by his wife who is also a Trustee of GHIC. I did as I was told as far as that was concerned. I am no longer involved with the charity so cannot comment on their specialist list or anything on their website.

As you say we both share a wonderful Neurologist who is my preferred go to! And as you also say, its important to me to continue to make sure that others continue to find the correct help, which was why I have and still do give up so much of my time.

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Oh yes I absolutely do remember you helped me to see Prof Hughes and I always looked at that as being the saviour in my terrible appoint!

It makes sense as to why he’s on the list now! It’s disheartening to hear he’s still upsetting people now and his views seem to have soured even further over the management of APS.

I’m always hopeful people will eventually find their way to decent Drs the way we have and it’s important that we who have tread the path before can help guide the way :-)

X

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APsnotFab,

British Kelly🇬🇧, has shared with me in the past how very gracious you were regarding that honestly tragic appointment for Kelly.

As you know, I had a similarly soul crushing specialty APS Rheumatoligist appointment in NYC myself just after my APS diagnosis in Texas. My Texas doctor sent me to any doctor of my choice just to try to get help trying to figure out why the warfarin ( INR) wasn’t stable and I wasn’t better.

This APS Specialist Rheumatoligist in NYC Is far more published that the doctor you are currently speaking of at LB. He and his predecessor ( just recently retired) and colleague were the impetus for the Sidney revision, and this revision bears his colleague’s name. ( I know you are aware of all of this. )

I tested twice positive on aCL and B2GP1 tests 11 weeks apart . Low yet positive titers - in the mid 20’s . With one week I developed a large DVT and was hospitalized for 10 days ( IV Heparin then bridged to warfarin until INR was 2.0 then released with instructions to maintain INR at 2.0-2.8). I was obviously not getting any better. INR kept dropping to 1.8, etc.

My daughter and I recently read about Dr Hughes, and I had only just joined this forum. But I didn’t know much... we did have the book Highways and Biways with us at the appointment.

My Hematologist said, let’s get you to NYC.

This was 6 weeks after my hospitalization I was in NYC. This doctor told me he did not think I had APS, but would wait for the blood work to come back.

I have the following history:

*Near fatal ITP in infancy

*temporal lobe seizures-

* multiple miscarriages- but not in a row. (one ectopic rupture )

* optic nerve atrophy- severe

* gastro paresis / ileus seen on scans With multiple surgeries to rule out mechanical adhesions. There were none. ( now my gastro and Hematologist and Rheumatoligist tells me it is mesenteric ischemia/ clotting to small vessels to bowels.)

*chronic appendicitis and appendectomy due to chronic ileus.

*gall bladder failure- no stones- ( age 29) in conjunction with ileus- surgery

*multiple hernias and repairs- first surgery age 18 months: ( toddler!) bilateral ingunal hernia repair

* Sjögren’s Syndrome ( w/o antibodies)

*highly elevated RF factor

*one positive ANA ( to be expected. )

*my mother had multiple DVT’s/ PE’s and my twin sisters were born prematurely due to pre eclampsia. My mother lost her life to clotting complications when I was in my mid 20’s.

This NYC Specialist told me that because I had gone sero negative while in hospital with DVT, and because my titers were not ,” at least 40, but preferably 70” he did not think I had APS.”

I was confused at first, you have to understand that this was all very new to me. My daughter and I questioned the sero negative aspect of APS.

This doctor very arrogantly said, pointing at Dr. Hughes’ book in my daughter’s lap, “Where did you read THAT? In THAT book?”

He then went on to quite unprofessionally and in a very blatant manner explain to us that Dr. He said the Dr Huges had made the funnel too widefor diagnosis, and the criteria had to be narrowed.

He told me, I’m reserving judgment in your case until the blood work in drawing today comes in, but I’m 95% sure it will be negative. If it is I’m recommending to your Hematologist in Texas that all anticoagulation be withdrawn immediately.

But don’t worry! With your history, we will figure our exact what’s going on and how to get you better.

I was so happy to hear I likely didn’t have APS! This was the best news I could have had, and I though it was a shame that Dr Hughes had jumped the gun and over diagnosed people with APS at the rate he had and exposed so many to potentially fatal bleed risks. Now all I had to do was wait for this brilliant top USA APS doctor to call in a weeks time to sort it all out with the proper diagnosis and a treatment plan to better health.

In one weeks time, as promised, the phone rang. “ hello! As I thought- your tests were negative. Make sure you don’t have any other clotting mutations like Leiden V , protein c or S deficiency. Good bye!

Wait!!!! I said...

What about my DVT? My history? My mom????

Well. He said... you said had been on a long haul flight to France 8 weeks prior... must have been a provoked clot.

I told him I noticed my arm was hurting the day before I boarded the flight. He did not listen.

My GP took over my Warfarin because my Hematologist dismissed me from his practice. ( however he just took me back on- it’s quite a story- my GP texted him and said- you got it wrong on bad advice of USA’s top expert. )

So- having this NYC Specialist on the list has put me in a very difficult position here in light of the fact that I’ve told my Texas team my story, ( initially- now not at all because I keep clotting and clotting, but in those early days - first three months or so- it was very tricky here.) and why I need to stay on anticoagulation.

I would tell my doctors, well the aps specialist in NYC is not a hematologist. He also does not see eye to eye with Dr Hughes. This can happen, I suppose when a disease is relatively new. (It seemed to satisfy them.)

Until I kept clotting and clotting. and my Rheumatoligist emailed Dr Hughes personally . Dr Hughes emaild him back ... and suggested that I go see Dr ______, In NYC! I looked like a complete fruitcake and a liar. This Doctor in NYC was just being put on the list of international specialists, only I didn’t know it.

You see, when I saw Dr Hughes in clinic, I never told him about my bad experience with Dr.__________ in NYC. Why would I bring that kind of bad energy or drama into the room? What a waste of time and energy.

I still feel that way...except this is hurting patients.

There absolutely no way Dr Hughes could have known this story. At least not mine. At least not from me.

Conversely, this doctor in the USA is contributing to the field in other ways. He’s obviously brilliant if you fit the criteria. The pregnancy clinic for APS is second to none. The research he contributes in mouse modeling will wind up helping all of us. ( it may be our children or grandchildren.) His big interst a few years years ago was Rituximab in APS. He ran initial some of the initial trials in APS. As the mysterious weavings of the universe would have it, I’m now being prescribed Rituximab infusions.

This would be a very good reason for him to be on the list, as much as I personally have reservations for a certain subset of patients. This subset of patients is very large, and often Morphs into moderate titers ( like me) - yet I still can go negative, but more and more often positive now.

( you and Mary are prime examples, far better than me.)

So this particular NYC Specialist is a mixed bag of contributing and harming. I do not have an easy answer. I do for me personally,and women just like me and match my profile- that’s always an easy answer. ( I could not recommend him.) But stepping back, thinking about the pregnancy clinic ( how instrumental is he in that? I can’t be sure. Funds funnel in from his work and I suspect), can I understand his name on the list of recommended doctors? Probably .

We say here in Texas, “ cream always rises to the top.” Let’s hope so...for all of our physicians.

APsnot Fab,

I can’t thank you enough for helping women like me, and the other Kelly, my British doppelgänger. I cant even hazard a guess as to how many others you have helped in this way. This is just a really bad situation, and it’s reach is definitely in America,and I suspect started here.

I think the only way we as patients are going to be truly safe is to have a revision / modification of the Sidney criteria again. An emphasis on clinical presentation and history needs to be brought to the forefront a little more in the diagnostic criteria. As Dr Hughes says, must a woman really experience 3 miscarriages “in a row?” Maybe it should say miscarriage history,” given other causes have been ruled out”. It’s an evolution to getting it right. We must somehow Have a stronger voice in that evolution. “ What is the patient teaching us?” The charity ( 10 points presentation by Dr Hughes-is a great voice start to outlining that process.)

The focus of any health care system is on preventative and pro activehealth care.

The Sidney revision can, in many inexperienced and sometimes even experienced clinicians hands, fly in the face of patients who are desperately trying to take pro active measures to not only optimize their poor health, but prevent a potentially pending catostrophe.

Could we fund raise with a very specific purpose? “PAR”

Patient Advocates for Revision?

“ PAR Excellence!”

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Hi Kelly - yes I do remember the awful circumstances you found yourself in as a result of the, (what I can only call) cruel and negligent attitude of that NYC Dr. I don't like to wish negativity on others but sometimes people like that need to experience it themselves or to members of their family so they can understand the frustrations and fear that we have to go through. They just don't know the meaning of the oath they sign - First do no harm - who is that too I may ask, their patient or their ego?

I am a firm believer in fate and what goes around comes around. Today is the 8th anniversary of my stroke and I must count my blessings for all the positive help I have had since that day, that has allowed me to still be here and have the quality of life I still have - even if its not what I would like it to be at times.

Im not sure about fundraising for your idea as I have no influence over that. What I would say is that there is a worldwide need to have a diagnostic criteria that is patient oriented not research oriented as the two are very different. Even if a patient was diagnosed in clinical practise, they would have to fulfil a specific criteria to join any research study, therefore in my mind there is no reason why the two have to be strictly the same.

So perhaps what you suggest is not far from the truth and whats needed is a pure worldwide patient movement, advocating only on the medical needs on behalf of the patient with APS. This should be patient led rather than medically lead so that it can feed into the medical world, rather than be led by it. Its almost like a union movement for patients!! just a thought?

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Happy Anniversary!!!!❤️

( virtual chocolate for you... metaphorically bittersweet...)

Yes, I really don’t know much about this at all. A woman who does is American attorney Lauren Styles ( Stiles?) who I believe is founder of Dysautonomia International, a patient led advocate group for dysautonomia. She is a patient of Dr Jill Schofield ‘s and has been very instrumental on many levels in Dr Schofield’s endeavors.

I, however, am very concerned about not loosing touch with powerful physicians ( APS specialists ) to champion the cause.

They cannot feel comfortable with any revisions unless they feel safe that patients are not at a bleed risk, and neither should patients themselves.

As we all know, the current criteria as stated has done little to put any ones mind at ease, much less practice/facility/ or institution at liability. No doctor here would want to get behind a movement that would be professional suicide with the current criteria the way it is now.

What I encountered here in the states repeatedly is ,” your going to bleed. “

Then hematologists or neurologists would present me with statistics on bleed risks. When I would ask, “ yes, but are these patients with APS specifically?” the answer was usually a sheepish, “ no...”

Our regular GP’s here in the states obviously want the best for their patients. They are not at all trained to catch APS. If it were more prevalent on their radar, with such strict criteria it would often get passed over and not get passed on to a Rheumatoligist or Hematologist. They have heard of it, they know the basics of it, they just don’t know how to spot it.

They certainly aren’t aware of details of a revised criteria compared to the original Sapporo criteria. That’s way too specialized.

(Here in the states, our GPs don’t handle the continuum of care for patients the way your GP’s do. We are sent to sub specialists, and each sub specialist prescribes the specific medication for that field of medicine, not the GP. )

So how to get an equal balance between physicians and patients? I’m concerned no one will listen to patients only. They don’t now...

The danger is the bleeds- but I believe the data is skewed.

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We go back to education and awareness which I don't think anyone is doing enough about. Dr's need to know the difference between bleeding risks with APS patients and those with no increased risk of clotting - a big difference. They also need to understand that those with APS who have a higher INR are not the same as those with say AF or again with no increased clotting risks. That information should be with all Doctors not just with specialists. It should be a general bit of info like prescribing antibiotics and statins.The problem is that there are very few GOOD studies done because of the reduced patient pool, which to make a study worth while, would probably have to enrol patients across continents rather than countries. It means better cooperation and collaboration, instead of the guarded individualised, glory seeking that takes place at the moment.

if a collaboration of patients come together in large enough numbers and what they communicated came from an intelligent, factual and reasonable place, then it could be effective. After all patients in numbers all saying the same thing in any arena would be difficult to ignore. I know a number of organisations who are patient led with only medical advisors, who seem to do better than those that are medically led. Perhaps because those involved invest more!

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Well it seems we could have the makings of some sort of plan. It sounds a bit ambitious, but hopefully it would grow. I’ve been thinking about something like this for quite some time. Something just has to be modified in that revision to keep patients like you, me , yllek🇬🇧, Claire, and so many others on here not only safe, but out of daily misery!

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The Dr that started this thread told me in person that he feels there is definitely more risk of a bleed than a clot. That is why I was so upset as I don't accept that.

Kaz

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I only congratulate your courage to speak out when nobody would like to do so.

I would have considered supporting the charity, but I have seen enough similar threads, popping up by patients, who were hurt and stunned by the bad experience. It's now recognised as "medical PTSD", it's similar to PTSD through physical, mental and emotional violence such as rape/domestic violence incidents. I do so hope that the charity recognises this as something they would need to address, properly. I do realise that these things happen and it takes a long time before "a change" is made. Nobody likes to upset the apple cart.

It sounds to me that the charity is well-meaning (i.e. no harm intended on patients), but it puts up the name of the consultant, who is fiercely against Prof Hughes protocol. That's only because his wife helps out the charity, not because this particular consultant supports Prof Hughes. This can continue to lead to some disaster/PTSD.

Prof Hughes essentially built APS in his golden era and you can tell he's genius. Other consultants (ex-trainees) appear to have a completely different mindset; they are more interested in "tinkering" the guidelines someone else started and take over. What he needs/we all need are consultants, who can continue his lifelong contribution in Hughes Syndrome. Not those, who are only interested in tinkering and modifying.

Don't they realise that diseases are not a static entity? We are talking about our own immune system, which is hugely diverse. There are enough patients, who are supporting Prof Hughes which is absolutely fantastic but this situation does not look good if I am honest.

No other rheumatologists in the right mind would be interested in disagreeing the existing consultant listed on the charity website. Neurology seems to get it.

Once again, thank you for sharing. Really appreciated your willingness to speak out for the benefit of other patients!

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He told me and my husband at the consultation he didn't agree when he was training which shocked us both. He said it was awkward to speak up. I guess now he is older and has gained confidence he can. He told me that things change in the medical world and things move on. His letter was carefully written and very weighted in his favour. I believe there are doctors out there and it is quite common for them to go only by blood tests not just in APS but everything. It puts people like me in the middle of two different opinions. Its not a nice place to be quite frankly. I absolutely agree with what you are saying. His secretary told me yesterday that he is not an APS doctor and he is Lupus only so I don't know why I was even booked in with him. He told me I was in the wrong place and needed heamatolagy. I still cannot believe it has happened to me as like you say it is bizarre. I can assure you that if it didn't happen I wouldn't be writing about it in the open. I am very glad I took a witness. Is this the start of things to come I wonder ? He says in his letter I was given an appointment here at the Lupus clinic and not at the Antiphosfholipid clinic. He admits in writing that he is not in agreement with the APS diagnosis and that the diagnosis in his opinion should not be given without the evidence of antiphospholipid antibodies. He wants me to see a lady called Karen Green in the Department of Thrombosis and Haemostasis at St Thomas's which I have cancelled.

Kaz

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Having met Dr Breen today, I can tell you that she was absolutely lovely.

The trouble is, would she be allowed to make a final decision about whether your APS diagnosis should stand and whether you should stay on Warfarin?

Dr Doyle didn't want to raise my INR back up to 3.5-4.5 (he lowered it to 3.5-4.0) .

I explained that when my INR drops to only 3.6, my APS symptoms kick in, if my INR drops below 3.5 my symptoms increase significantly, including acute abdominal and kidney area pain and multiple TIA type symptoms, migraine, balance issues, brain fog, can't find my words etc etc. If it drops below 3 then I'm in a full blown APS flare and cannot function, my symptoms are so severe that I become bed bound.

I told Dr Doyle that if I keep my INR above 4, then my APS symptoms are minimal but if it drops below 3.5 then my pain and other symptoms become unbearable. I explained that in not allowing me to keep my INR higher, he will be subjecting me to symptoms so severe that my life is not worth living. If I want any quality of life then I need to keep my INR at 4 and above.

I think I got thru to him because he said he cannot stop me from keeping my INR above 4.2 and he understands that it is my body and therefore my choice to do this. 👍

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That is progress. Very happy for you. Pleased to read things are going in the right direction for you.

Kaz

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The most important thing now is that you stick to your guns. Do not back down and get second opinions to back up your APS diagnosis if necessary.

Taking any anticoagulant medications comes with the risk of bleeding and so we must way up the pros and cons. If warfarin is keeping us well and we are not functioning without it, then I think most of us would want to stay on it.

I went thru the most horrendous time trying to get my APS diagnosis and then get the correct treatment. I don't think I would have seen it thru, if it wasn't for the kindness and support I received here on Sticky Blood. You're not on your own, you have the support of the amazing ladies here on Sticky Blood. 👍❤️

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So glad this forum exists xx

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Hi again,

I wonder if you selftest today with the new CoaguChek teststrips? Does it work to keep your INR around an INR of 4.2?

Kerstin

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Hi i do self test. I keep my INR around 3.5 to 4.5. I like to be around 3.8 ideally to feel good. Lots of things can change the test such as various foods and medicines but I use my machine twice a week and do not travel anywhere without it. My INR was dropping recently for no reason and my platelets were low. It seems to be back to normal now but that is one of the things I wanted help with from St Thomas's. I didn't even get a blood test. Do you self test ?

Kaz

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Yes, I do and today I use two different machines for testing. I must choose which one is the best. The CoaguChek XS has been much better with the new strips.

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I do self test with Coaguchek XS, alongside regular vein draws.

My vein results are usually between 0.5 - 0.8 lower than my Coaguchek finger prick test, therefore I like my Coaguchek result to be around 4.5-4.8. That way I know my vein INR should be between 3.8 - 4.2.

Yesterday when I did a Calibration at Guy's Hospital, my Coaguchek result was 4.7 and my vein INR result was 3.9, which for me is great.

In aiming to keep my INR at around 4.2, I have more chance of ensuring that my vein INR stays above 3.8. Whereas if I try to keep my INR between 3.5-4, I have a far greater chance of it dropping below 3.5 and once this happens I begin to clot and then can very quickly nosedive into a full on flare up.

Because the difference between my Coaguchek result and vein result vary between 0.5-0.8, I'm still having one vein draw a week to be on the safe side. They prefer the Coaguchek result to only differ by 0.5 to the vein result. Unfortunately with the lupus anticoagulant, the Coaguchek results can vary that bit too much.

To stay within my range I self test at least three times a week, if I'm very symptomatic then I will test every other day. If my INR is staying steady then I stick to my usual warfarin dose. If my INR has dropped too much, I will add 1mg to my dose, if my INR is creeping too high, then I will deduct 1mg from my regular warfarin dose. Sometimes I only need to adjust by 0.5mg warfarin. Dosing myself this way prevents my INR dropping too low, or going too high.

In my opinion where keeping our INR within our in therapeutic range is concerned, "prevention is better than cure" because once our INR drops too low and we go into a flare up, it is very difficult to get the INR back up again.

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You are doing just fine I can understand. Do you never use the greens to reduce the INR in a shorter time?

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Yes its spinach for me or Benecol yoghurts funnily enough !

Kaz

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That's really interesting, maybe I should get some benecol yogurts. I wonder if the benecol drinks would work too?

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To be honest, I have more trouble with my INR dropping than going up. I used to keep tenderstem broccoli in the fridge, just in case my INR went too high but it was always going off, as I didn't need to use it and ended up in the bin.

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I make spinach soup if I need to bring my levels down. In the summer I use spinach as salad leaves if its too hot for soup. My son bought me the Deliciously Ella cook book for Christmas and the recipes in there seem to help me. No Dairy and gluten free alternatives to every recipe. I am using Goats milk and cheese now which I know is dairy but I seem okay with that. Odd how much we all have to look after our digestive systems.

Kaz

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I think it's because APS affects everywhere in the body.

I've had digestive issues my whole life but have EDS as well as APS, which also affects the digestive system.

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Same here, I was also discharged from St Thomas after being diognosed officially by Dr Khamashta 6yrs ago. I was sent to the hemotolgist at Guys and they repeatedly say I no longer have APS despite it not being curable, strange! I have tested positive four times but have been told all my other blood tests were negative and they weren't high enough to reach the new criteria. My neuro doctor at St Thomas went straight to the labs and discovered that all my blood tests were positive and within the criteria!!! These people are criminals. Like you I was put on fragmin for 3yrs and felt a new person, now I'm left with the return of all the debilitating symptoms. My brain scan showed two lesions in the basil ganglia area which is usual for APS but now they are saying they are age related!!! I intend to start legal proceedings if I have to, this can't go on. We are all suffering because of money pinching by the NHS and having to see arrogant Dr's with huge egos who are happy to lie to their patients.

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Thank you for your reply. I felt there was more going on here. It started when they closed the clinic (the one next to St Thomas's) and all the funding stopped I am guessing. I fear this is the way forward for many of us. It is dangerous, they are really sticking their necks out.

Kaz

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We all need to stand up against these people. If we all complain to the higher authorities then they will start to see a pattern emerging of their unethical practices. Dr Khamashta who diognosed me was Dr Hughes right hand man. I have experienced the same with insulting comments about his work ethics from junior so called APS specialists.

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I am sorry to hear that Jessie.

I met Dr Kamashta a few times. He looked after me well after Prof Hughes left. He was always a well informed doctor and spoke with much knowledge re APS. Shame to hear you have had the same experience.

Kaz

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I'm seen by the Hematology department at st Thomas' and have never had any complaints with my treatment. In fact they have gone out of their way to help me, giving me a referral to Guy's for my disintegrating knees. I'd keep the appointment with Hematology because they do listen and certainly try to help even when it's beyond their field of expertise.

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Unfortunately it is not something I want to risk i.e. being withdrawn from Warfarin so won't ever go back there. My GP says I can carry on as I am as long as I understand both sides of the two doctors arguments.

Kaz

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Hematology aren't likely to withdraw Warfarin though and if you want definitive answers they really are the people to see.

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Good for you for discussing this with your doctor. I was trying to make this point in my reply that the rheumatologist may have a legitimate reason to recommend certain treatment in view of current research. But that is only an opinion. Good doctors disagree all the time. You are now informed and can weigh out the risks and make your decision. Your quality of life is important. K

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Thanks you Kay. He should know however that it is not only based on blood tests. Prof Hughes would have taught him that.

Kaz

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I really don’t understand why these doctors put so much trust in a blood test. When I saw Prof Khastma years ago he told me that the blood test only test a few of the proteins involved in this disease, there are at least 60 others they could test that would probably test positive. They don’t test those because it is not cost efficient. If they are not going to test all of them then what gives them the right to say we don’t have APS because we test negative. The risk they are taking with our lives by taking us off warfarin is not acceptable. I miss Prof. Hughes.

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Well, some of my Hematologists and Rheumatoligists alike also test for the phospholtydelserine the others in the Elisa panel. I’m positive to those as well. I’ve not had the UK physicians test these. Dr Huges talks about them in his book Hiways and Biways. He refers to them as ,” additional antibodies. “

He said when he and his team were working on this disease initially, it was the aCL and LA proteins he ,” had on the shelf.”

Can you imagine if he had the others? It might be called ,” Antiphosphotidylserine syndrome!”

Just when you though the pronounciation couldn’t get any worse!

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There are other antibodies that Rheumatology never begins to check. It was in Japan that they found some unusual sounding antibodies. Mayo was shipping their patient's blood to get it screened as Mayo did not have the facility or they did not even "know how". Apparently, Japanese researchers used unusual techniques. It was a Professor as well. They are not looking for better guidelines, they are busy stepping into uncharted territories. NHS kills innovation. It's essentially a graveyard to some clever researchers. As a patient, I only see that this is apparent backstabbing, that is pure ugliness.

I am often amazed by the fact that he seems to be surrounded by colleagues that have passion for disagreeing to his views and he not only puts up with it, but also try to be inclusive of them. He has vey few professional allies, who support him.

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“ don’t throw the baby out with the bath water” is perhaps the thinking.

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Prof Hughes was great. He made my life so much better. I agree re the blood tests.

Kaz

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I'm new to.aps and not understanding what's happened with what you guys are talking about? I don't have to be told the ins and outs but not sure what's going on x

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Basically, I was diagnosed many years ago by Prof Hughes himself based on various things such as miscarriage. memory problems, clot on lung for no reason and a strong family history of clotting and auto immune disease. I also have lesions on the frontal brain area. I do not test positive for APS but Prof Hughes decided that I had the syndrome and that not everyone tests positive for it. I have been very well for years since starting Warfarin and no further clots. I was discharged by St Thomas's where Prof Hughes worked shortly after he retired. There was an agreement that any of us could return if we had problems our own Dr's were struggling with. I have recently been unwell and asked to be referred back. The Dr I saw now does not accept that I have APS as I don't test positive which is against what he has been taught. He has written to my GP to tell him that he doesn't think I should be on warfarin and tried to get me to see a haematologist at St Thomas's in a view to coming off of it which I am against.

Hope that explains what we are discussing.

Kaz

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“ back away quietly and no one gets hurt...”😉

( unless you go to guys and st Thomas with positive tests, no clots , a positive diagnosis from Prof Huges, ( been doing very well in warfarin for years, and thank you very much indeed) only to now be told- oh you haven’t got it- go away- no warfarin for you!)

Sadly, the truth is many can get hurt... and many already have.

I’m so glad we have each other’s support! Dr Hughes is bang on in wanting this charity for just this reason. I am also confused why some doctors are on the providers list, ( one American doctor in particular and it has to do with the strict adhere to the Sidney revision, and his blatant refusal to listen to the patient, ME.) but I am going under the assumption that he must help far more patients than he potentially harms.

I plan to write this doctor, and update him on my current health status. ( a severe case of refractory APS and severe continued clotting / DVT’s.) You see, he dismissed me as not having APS after one consult and recommended withdrawal from Warfarin. That’s when my GP sent me to London.

Perhaps this APS specialist will reconsider, and find this very helpful information. Perhaps not. At any rate I will not let it lay fallow. It’s too dangerous. All other possibilities of clotting have been ruled out per his recommendation. I have left no stone unturned. I realize I do not fit nealtly in the revised criteria as my titers are not , “ persistent and high.” This doctor will only accept 40 but prefers 70.

I have now had about 10 DVT’s in 26 months despite a high , and often supratherapuetic INR

.

My Texas team is now starting Rituximab infusions in my case.

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Reading all this with interest and concern, having been passed about myself from lupus unit at guys to haemo at st Thomas’s

I see prof hunt (who is rather abrupt) and have seen Dr Breen also. I have high triple +antibodies.

If anyone is seeking alternative haematologists, I only have good things to say about prof Arya at kings college hospital. He is a very kind man, very accessible (I used to mail him late and night and he always replied)

He is not an aps specialist, but he dx me and cared for me for a long time, he will support the higher inrs

Kings is a centre of the excellence also for High risk pregnancy

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Yes she is isn't she, she told me that my meds are causing my symptoms and because I haven't had a clot then it can't be aps or only the anti bodies which wouldn't affect me. I'm just hoping these blood test show enough to keep me on a thinner if not then I will struggle a lot to function

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Wow, what a can of worms we have opened in this thread! 😱

As I said above, I never mentioned the name of the Heamatologist at St Thomas Hospital who treated me so appallingly because I know that many patients think Professor Hunt is wonderful.

I truly hope that she continues to be a wonderful APS specialist for you because I wouldn't wish what I've been put through by St Thomas Hospital on anyone.

How would you feel however if you had new blood tests taken and suddenly your antibodies become lower, or disappear completely, which CAN happen and you're told that you can no longer take anticoagulants?

It would appear that this is what is happening with their new APS protocols.

From what I have read online and in books written by Professor Hughes and other specialists, all autoimmune conditions come with antibodies that can come and go in the blood.

If someone who has SLE or Rheumatoid Arthritis, suddenly has blood tests where their antibody levels have dropped, or disappeared completely, will they then be denied medications to treat their SLE, or will patients with Rheumatoid Arthritis then be denied their pain medications?

That is a really troubling thought? 🤔

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I just read that there are multi-center trials that will help to resolve the controversies in the field. You make excellent points about auto-antibodies going from positive to negative. It certainly has happened to me. I hope you get the best treatment for you as an individual. Maybe these trials will help the many people like you to not have to fight to get treatment to function in life. K

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Thankfully I now have my APS diagnosis and I'm allowed to have a higher INR level of 3.5-4 and inject Fragmin if I drop to 2.8. Personally I think that's too low because I begin to clot as soon as my INR gets anywhere close to 3.5 but I understand that they have to be causeous re bleeding.

Anticoagulation needs seem to vary so much from person to person and I wonder whether it would be worth doing a survey to see whether high antibody blood test results, equals a high number of clotting events and vice versa?

If a person has low or no antibodies found in their APS blood test results, would it follow that they have fewer clotting events?

It would also be interesting to see if how many non clotting APS type symptoms a person experiences, like migraine, brain fog, blurred vision, balance issues etc, in respect to their APS blood test results, ie are their antibodies high / low / negative? 🤔

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My neurologist would say you are asking very good questions! In response to my asking for an explanation for certain of my “weird head” issues, he responded, “I just do not have a crystal ball to know exactly what is happening inside at a given time — antibody levels can go up and down and you can be affected by dehydration, humidity, a virus.” So he is essentially saying that there are many things they do not understand. You should be on a patient research advisory board and tell them what to study! K

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I'd love to tell them what to study. 😉😉

I really wish that doctors /specialists would listen to their patients more and maybe take a leaf out of Professor Hughes' book, by asking 'what can I learn from this patient'?

Doctors/Consultants understand blood test results, or scan results etc but ultimately "we the patients" are the ones actually living with and experiencing what our conditions/diseases do to our bodies. Therefore are "the patients" not the ones who can educate them the most? 🤔

My ex was a doctor and he used to tell me that I need to become an expert in my own health conditions because they are rare and one of them is life threatening. Unfortunately, there are some doctors who really don't like their patients to be medically educated.🙄

I have a very curious mind anyway and I'm one of those patients who wants to know everything because I feel much more relaxed when I know all the facts, even if the facts are a bit scary.

It can be very frustrating when you don't know what's going on inside your body, especially when you know something is wrong but the doctors/specialists can't find a cause.

I like your neurologists response, I think it's important that our specialists are honest with us because often they don't have all the answers. What is really hard to cope with, is when you know the doctor clearly thinks it's all in your head because the test results aren't coming back positive!

Do you mind me asking what symptoms you experience in your "weird head" ? 😵

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Haha. That is my own term that I use as sort of short-hand for my doctors. I have had numbness in the face and arms, heavy head with nausea, paresthesias, ear-ringing, weird noises in my head, flushing, twitching. The official diagnosis is “migraine variant” but possibly seizure activity. I want to add that I remember how Professor Hughes or maybe this international group was trying to involve other specialists in APS research. That is important because of the multi-system problems. In the U.S. neurology departments are starting fellowship training in autoimmune neurology. That should be a big plus because of the many neurological issues that they can best deal with. My neurologist is part of a department with an autoimmune fellowship training program. I would think the U.K. would also be developing these programs, although at the moment it looks to be in the U.S. where there is likely more money allocated for research and training.

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It's reassuring to hear about the research that's going on in the US. You're right about there not being the funding in the UK tho.

It's sad but the NHS is cutting corners every which way due to lack funding and its really affecting patient care.

Does your neurologist think that your symptoms are APS related then, ie the antibodies are affected by dehydration or a virus?

I get some very strange things going on in my head too. I get the ringing like you mentioned and often in my sleep I get woken by the sound and sensation of a gun going off in my head, or like I've been zapped in the brain by a stun gun. Sometimes my head, upper body and arms jump off the bed too when it happens!

It's a good job I live alone and don't share a bed because I would probably give anyone I shared a bed with a heart attack! 😱

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Well, I think he thinks it is likely that the antibodies are causing this. I also have autonomic dysfunction. Professor Hughes mentioned the connection between APS and dysautonomia in a blog. I have other antibodies with the connective tissue disease, so they can never tell exactly what causes what. The term my rheumatologist uses is « low level CNS involvement. » I do not have APS because I have not had a clot but am aCL positive. Have you been to a neurologist? I don’t think there is much debate that APS causes neurological symptoms, including seizures.

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What is CNS? I'm sure I've heard of it but I can't seem to remember🤔

I guess if you have autonomic dysfunction as well as APL then it is really difficult to know what is causing what symptoms.

I was tested for autonomic dysfunction last November and the tests were negative, which personally is what I was expecting.

I used to be under a neurologist back when I had some very serious clots to my brain. I had an EEG at the time, the results of which stated that I would be prone to epilepsy but I've never needed to take any medication for this.

I've not seen a neurologist for over ten years now but I think that I may need to ask my GP to refer me to one, as I've been having a shed load of neurological symptoms for the last couple of years.

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I think you should definitely see a neurologist. Could you ask your APS doctor who he recommends? He will know a neurologist who is more sensitive to APS issues. CNS is central nervous system. Good luck and keep me posted!

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CNS, yes of course I did know what it is, but my brain just couldn't locate it, brain fog anyone?!!

I'm speaking to one of my specialists on Monday and will ask his advice re seeing a neurologist 👍

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Even when on a high stable Warfarin-dose? Neurological symptoms I speak of.

Kerstin

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I definitely have much less neuro symptoms, or jolts to my body where my body and or limbs jump up, when my INR is at about 4 and above.

All my APS symptoms become worse as my INR drops. One thing I've noticed is that I seem to get clotting symptoms, even when my INR has dropped down lower but when it is above or within range my range.

For example:

Tue- 29/1

Vein INR - 4.7

Coaguchek - 5.5 (+0.8)

This is slightly above my range of 3.5-4.0, so my warfarin dose was lowered slightly for a couple of days.

Sat 2/2

Coaguchek Finger 4.8

Vein will most likely around 4.0

Today I have been experiencing clotting symptoms, like clot pain in my legs and groins, plus the feeling of a bubbling like sensation in my legs, groins and lower abdomen. I get this bubbling sensation whenever I'm clotting in the incompetent and varicose veins in my legs.

I just wonder whether we can experience mild clotting or APS symptoms, when our INR drops down, even though we are within range?🤔

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Yes, you and I are a bit the same as to INR. I have noticed that I can not trust that there is the same difference between CoaguChek and vein at a special CoaguChek-Number. Your vein-number could ev be a little less than 4.0 when you feel that you clot. You can not be sure if you reduce your Warfarin-dose that it will not bounce a bit too low. Greens make the INR bounce down very quickly.

Interesting if we feel clotting sensations when we drop down. Must be possible but I have not noticed. I have been at a very high INR lately. I did not know I was that high in INR but that is my own fault because I should have seen the hospital-lab more often and doubletested.

I have had two different selftesting-machines in December/January. One of the machines (not the CoaguChek with the new strips) show for ex 4.5 and when I take a vein-draw on Monday (for ex) it can be 3.9 but 4.5 next Monday could show 4.8 at the lab in the vein.

Then you do not know where you are and what number to follow to be at around 4.0 in the vein. I am quite ok even a lot higher but afraid of a bleed as to my age (74).

I am triple-positive with persistantly very high titres since 2002.

The CoaguChek with the new testingstrips is better now.

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My Coaguchek result does vary in the difference between vein and finger prick result, by between 0.5-0.8 higher than my vein.

Its not ideal to have such a varying disparity between vein and finger prick result but I'm still able to use my Coaguchek to help keep me therapeutic.

My therapeutic range is 3.5-4.0 and so I have been trying to keep my Coaguchek finger prick INR at 4.5-4.8. (which hopefully means my vein INR is somewhere between 3.8-4.3)

I've managed to convince my anticoagulation nurse that it's better to keep my vein INR at the top of my range, as this will help to ensure that my INR doesn't drop to the bottom end of my range, or even lower and trigger a flare up.

I had been testing my finger INR every 2-3 days but I now realise it's better for me to test every two days. My INR wouldn't have crept up so high earlier this week, if I'd tested my INR a day earlier.

Had I checked my INR a day earlier, I would have realised it was beginning to go a little high and so would have adjusted my warfarin dose down by -1mg, to prevent my INR from going any higher.

This is what seems to work best for me. We know that the food we eat can affect our INR, sometimes quite dramatically if we eat something like spinach, which is high in vitamin K. By checking my INR every 48 hours, I can see if something I've eaten has made my INR begin to drop down and then can adjust my warfarin dose up by 1/2mg or 1mg, to push my INR back up again.

I find that using low doses of 1/2-1mg of warfarin to adjust my dose, gives me far greater control over my INR, than say eating something high in vitamin K.

I can't know for sure how much vitamin K I'm getting by eating say some broccoli but I do know if I take 1/2mg -1mg of warfarin, if that makes sense? 🤔☺️

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That make sense and I understand quite well.

Today for ex i will cut down my tablet of Warfarin with 1/4 (less than 1 mg) and that I will notice within 2 or 3 days. As I always eat greens (around the same amount every day) I can decide to cut down on the greens (I do that with the brusselsprouts as they are easy to count how many I take as to how much I want to cut down on the INR) and get an effect within say 15 hours. I have been testing every or every second day as I can get the strips when I want to. Every second day should be enough but it is easier to follow the INR when you do not wait too long. I write down every number so i can follow afterwards and see what I have done when it went up a special day or down too quickly.

I am seeing my Hematologist this week and I shall ask her if it is ok when I go back to the old CoaguChek XS with the new strips (!) and then I do not use the other selftesting machine I had when the strips were faulty ones. My INR is changing very easily perhaps because of the LA and high titres. Some members here may not have an erratic INR like me.

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I completely understand your way of testing, as I have the lupus anticoagulant too. I like your idea of counting brussel sprouts, I think I will try this, as I really like them. My favourite veg is tenderstem broccoli but I try not to have too much because it affects the INR.

When I speak to anticoagulant nurses who don't really understand how APS affects me, they tell me that I shouldn't be testing my INR more than once a week. They seem to think that it doesn't matter if my INR drops to say 3.3 during the week, as long as its staying roughly in range, for example 3.5 one week and then 3.8 the following week.

What they don't understand is that I cannot afford to let my INR drop below about 3.6 because I will start to experience clotting symptoms.

If I were to let my INR drop to say 3.3, then I am likely to start clotting so much, that I could end up in a full blown flare up!

Monitoring my INR every other day and adjusting the dose if necessary, is the best way to keep my INR stable and at the top of my therapeutic range. When my INR is 4 and above is when I feel my best and it also makes all my symptoms better, even my breathing.

I had a respiratory nurse visit me this week and I was explaining to her about how much worse my oxygen levels and breathing are, when my INR is too low.

She really understood what I was saying and told me that it's really important to get oxygen into every cell in our body. She said that when we have lower oxygen saturation levels (and it doesn't have to be really low, even when our oxygen saturations are only below 96%), then our body's organs don't get enough oxygen.

She said that having APS will affect the distribution of oxygen to all my organs and if my blood starts to become very sludgy and even worse begin micro clotting, then even when I'm using my oxygen, it still cannot reach my brain, heart, lungs and other vital organs properly because its the blood that's carrying the oxygen.

If our blood cannot get into our organs properly to supply them with sufficient oxygen, then they will become damaged. I know that my lungs and kidneys have already been damaged and I've recently been referred to a specialist cardiologist, to find out whether the micro blood vessels in my heart have also been damaged, due to having micro clots.

Discussing my oxygen saturation levels with this respiratory nurse, really made me realise how important it is to keep my INR at 4 and just above.

If I don't and my blood becomes even just a little bit sludgy, then this will prevent my organs from receiving oxygen, even when I'm using my supplementary oxygen!

The same thing will apply to all APS sufferers, sludgy blood prevents the distribution of oxygen to the micro blood vessels in all our organs. Having sludgy blood and/or micro clotting, won't just cause us to flare up and experience all our horrible APS symptoms, over time this lack of oxygen to our vital organs, will also cause organ damage.😱

I don't think I fully realised that, until speaking with this respiratory nurse, specifically about how APS will affect the delivery of oxygen throughout our bodies! 😮

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I completely agree with you. It is sad that it should take such a long time to get to the point when you know from own experience when you have too thick blood.

Well said and explained!

Thank you!

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Glad to pass on what I've learned.

I have learned so much about APS already from you as well Kerstin, so thank you too!

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Actually in the UK Neurologists have made up a condition for people who they cant be bothered to find out the real cause of their problems - it gives them a name instead of saying its all in your head! Its called "Functional Overlay" and there is even a group thats started up on here, which is really sad because you can tell many have real medical conditions that need proper treatment. Its what Fibro is to Rheumatologists!! When there is a condition thats named without any tests we are going down a slippery slope!

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I've heard about this Functional Overlay and I'm not impressed 😒.

You're absolutely right, it is a slippery slope going in the wrong direction, that can only end up in a failure to diagnose the patient.

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Functional Overlay, seems to be very close to Functional Neurological Disorder, perhaps a new name for it. Wife was diagnosed with it in 2013, really horrible diagnosis. Took 9-12 months to convince GP to do any tests, even simple ones. Still fighting this diagnosis, pretty sure it's the reason for all our problems getting wife better and properly diagnosed with APS. Consultants literally look at notes, see FND and everything is down to it, think happy thoughts, believe there's no wrong with you and your symptoms will disappear (just like magic (NOT!)). It should be BANNED! Shows how lazy a neurologists is. The one that gave the diagnosis was layed in his chair, just needed his feet on desk, with a expression of, I've told you what you've got, leave me alone!

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Even with a diagnosis and repeated DVT’s , a doctor with very little understanding of APS is a very dangerous thing.

Our teenaged son ( last year was 16) has the “additional “ antibodies and mild migraines about once a week. He is under the care of an excellent pedi Hematologist in San Antonio, Dr Mahendra Patel. Our son is doing fine and really does not have full APS, although the pedi Haematologist did give him the diagnosis based on family history.

I have quite a severe case. At a particular appointment with my son about a year and 4 months ago with Dr Patel, he evaluated me as well. He can’t take me as a patient because he only sees pediatric patients. I was clearly developing another arm thrombosis. He felt I might need antibody suppression . He recommended seeing a certain Hematologist... he was awful!

I was only there for a consult so wasn’t there to establish a history, etc...

He started asking every little detail... I wasn’t entirely prepared... it threw me. I told him I had been to the London Lupus centre- and dr Hughes had co counseled on my case. My INR has been raised. I showed him patient of the month- the one that was me. ( I think anyway...April 2016- lady from Atlanta with daughter. I never told Prof Hughes what my profession was or what I did for a living. It had to do with arm thrombosis and epilepsy. Prof Hughes only got wrong that my epilepsy was confirmed via EEG.) I told him Prof Natasha Jordan was my main Dr at London Lupus center.

This doctor asked me if my print out was an original of Dr Hughes. I told him I assumed it was . He said ,” Dr Hughes is a horrible speller! He can’t write at all! “

Ok...

Then he asked me all about London... where is the lupus center? Mind you- I was jet lagged, it was late January, and my INR by vein was 1.8, (horrible migraines) and I was very recently out of the hospital when I was in London. I told him it was just tucked under the London Bridge- near the parliament building. Big mistake obviously!

I morphed the two bridges together...

Then he started asking me about restaurants... did we eat here, or there... ?

I told him honestly we enjoyed the borough street market area. Then we in the Pimlico area for a bit and did the neighborhood things and had family time, as my nephew was attending Oxford university and we wanted to cook and be as a family at home. ( in a real kitchen, and dining room and living room...)

He wanted a list of my key doctors, including Dr Jordan. And phone numbers. Great- I was happy to provide them.

He called me a week later. He told me that I had the third antibody, the Lupus Anticoagulant along with the other two. He said it probably came and went, but he was able to pick it up with an assay called chromogenic factor X.

Then he told he he thought I needed psychiatric help!!!!! He told me that I had obviously lied about going to London. That I had forged the blog from Professor Hughes. That no doctor would write so unprofessionally.

He basically all but accused me ( without saying it directly) that I had munchausers by proxy with my son. We never discussed my son! I would have told him my son is doing just fine- we just keep an eye is all. He plays sport, he lives the normal life of a teenaged boy! I’ve never had a moments trouble with any school!

He didn’t say I was lying about APS, obviously. But he didn’t trust my history- because of my history going positive/ negative with those titers.

He told me he called London Bridge. I said, great! Then you understand the situation. He said, “ apparently Prof. Natasha Jordan is out recovering from a surgery.”

I asked him, If you think I’m fabricating a history to support my disease , then how do you explain my mothers early death from clotting complications?

“ you need psychological help.”

“ how do you explain my text book classisms symptoms? My awful livedo? My surgeries? My Ileus? My repeated miscarriages?

“ you need psychological help.”

“How do you explain my seizures?”

“ you need psychological help.”

I was terrified that child services were going to investigate me. I knew I would have my doctors supporting me, but what on earth was I going to do? There was a fear in the back of my mind... “ high and persistent titers...” and I suddenly had a sickening feeling that a small part of me understood what the Middle Ages felt like during the witch hunts...

When I went back to London last spring I asked Professor Jordan about this. She said she remembered going through her messages upon her return from her surgery and seeing a weird message -she ignored it.

Never in my life has anything like this ever happened to me.

Some of my doctors have said- I got a strange call from a random Hematologist. He asked if you were my patient. He didn’t really ask anything else- just if I was treating you for seizures, or whatever else the problem was. I said yes... but the doctor didn’t ask any other questions.

My GP said, I wish I would have known about that- I would have never sent you there. He’s known for being extremely arrogant-none of us can stand him.

He specializes in breast cancer.

That’s my weird story.

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Really hope you never see that Dr again, why do Dr's always jump to psychological problems? We have had a new neuro in the last couple years, we were hoping for a clean slate with them. The rheumo even deliberately left out FND. Unfortunately the new neuro put it back and agreed with the old neuro! They seem to be obsessed with FND. Unsurprisingly they work with the old neuro, probably best of friends. Makes you wonder? Did ask for a second opinion with the old one, but got told it was pointless as every other neuro would agree with him and his department cover upto 3 counties! Really wish we'd never seen neurology

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I don’t know how to post a link here, but thought you would find it reassuring that Graham Hughes is on the APS ACTION committee along with an American rheumatologist, Michael Lockshin, who is known for his important research on APS and pregnancy. From what I can tell, it is this international organization that is at the forefront of advocating for international collaboration on APS research. Looks like Professor Hughes is still very active in the field at the highest levels. Many others here are more familiar with this organization and the other experts.

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That is really good to hear! Thanks you for posting 👍

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For the life of me I cant see Graham Hughes name on the list of Dr's associated with that organisation? If anyone can please point me in the direction... 🔍 Prof Hughes does do some lecture engagements and attends a few conferences but other than that and his Lupus Journal he is now retired.

He is close friends with Prof Lockshin, who I understood to have also retired now?

apsaction.com/research/

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I’ve just saw him on the honorary members section ..... along with Nigel Harris and 2 others.

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I may have seen an older list. The one I am looking at now has still has Michsel Lockshin listed and Graham Hughes listed as an honorary member. Google: Graham Hughes, honorary member apsaction.

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Yes I see he's just an Honorary member but not active.

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Glad you found it. Looks like Dr. Lockshin is still at HSS by the website but maybe he did just retire. I was wondering if the two had worked on research together at one point.

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More collaboration, they are good friends. If you look at the photos and articles on the GHIC media page there is a exert that was written by him about Prof Hughes. Its photo 22.

ghic.world/media/

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Having trouble finding it. It all makes sense now that over thirty years ago, after I had a positive VDRL, my doctor sent my blood to a lab at Cornell to test for the antibody Graham Hughes discovered. I will ask him, but I think it must have been Michael Lockshin’s lab. It is so interesting to see the evolution of the understanding of this syndrome and how researchers have collaborated to advance medicine.

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I've just had a letter from Guy's and St Thomas Hospital Thrombosis Team, finally confirming my APS diagnosis. When I spoke to Dr Doyle on the phone, he had told me he was waiting for the second Lupus Anticoagulant result to come back, before confirming my APS diagnosis.

My letter says:

Diagnosis - Antiphospholipid Syndrome

Lupus Anticoagulant positive, (TSVT - August 2018 and January 2019).

As you know I wanted to put my INR therapeutic range back up to 3.5-4.5, because I feel so much better when my INR is above 4. All my APS symptoms improve including headache, balance, brain fog, abdomen and kidney area pain etc etc. (St Thomas' had lowered it to 3.5-4.0).

In his letter, Dr Doyle says that he doesn't want me to have an INR any higher, firstly due to my anemia but its his "secondly" reason that I wanted to share with you, as I think you'll find it interesting.

"secondly, we base anticoagulation targets to prevent the recurrence of thrombotic events in APS, not improving other systemic features"

It would seem that this information confirms the new criteria for diagnosis and treatment of APS.

Even though I now have my APS diagnosis, my anticoagulation treatment is based on prevention of any further thrombosis, not to give me any relief for the multitude of APS symptoms that comes with the autoimmune condition!

I'm assuming this is why St Thomas Hospital are taking APS patients, who have not had a thrombotic event, off of anticoagulant medication, or even rescinding their diagnosis!

It clearly doesn't matter how debilitating their APS symptoms are, as far as St Thomas' are concerned, anticoagulant medication is not going to be prescribed for relief of APS symptoms, only for prevention of further clots.

What about prevention of clotting events in APS patients who have yet to have a thrombotic event?

I'm going to do a separate post about this but I wanted to share it on your post too.

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I think your sense is correct. You were very clear. Maybe in the beginning, before international trials, APS specialists were increasing the anti-coagulants to improve symptoms. This may have proved to be too much of a risk, though. I really feel for you. I am sure the doctor believes you feel awful but he cannot, in his professional opinion, put you at undo risk. Those of us with systemic connective tissue diseases understand this well. I would feel great on a low dose of prednisone but it is absolutely not considered with mild symptoms of fatigue and myalgia for me. I can hear you are upset, and I wish I could offer more help. Do understand this risk-benefit ratio is what doctors have to weigh out. As you and I talked about, maybe some of your symptoms could be addressed with neurological medications. I hope so. Really, I know it is hard. Get that neurology consult! K

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Thank you for responding. I'm not upset for myself, as my heamatologist accepts that I want to keep my INR at about 4-4.2 and understands that I plan to do so.

I do understand where he's coming from, I know they are concerned about bleeding but I wanted to share what he'd written, regarding the decision to base warfarin therapeutic ranges, so as to prevent further clotting in an APS patient, as opposed to prescribing warfarin to help reduce and relieve the debilitating APS symptoms, caused by their sticky blood.

I feel the way he has explained this, is in line with the fact that they are changing the diagnostic and treatment criteria for APS.

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I see. Glad your doctor is flexible.

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He would prefer me to keep my INR at about 3.7-3.8 however he understands that the lower I try to keep my INR, the higher my chances are of becoming sub theraputic.

I begin to become very symptomatic if I allow my INR to drop to 3.7 and so I do my utmost to keep my INR between 4.0-4.2.

If I were to keep my INR at 3.7, it would be very easy for my INR to drop below 3.5, the bottom of my range. By then I am clotting and so will very easily slip into an APS flare up, if my INR drops below 3 then my symptoms are so severe that they can render me bed bound.

Once I'm in a flare up, I'm not only acutely unwell and at risk of a PE, or TIA etc, it is also very hard to get my INR to come back up again.

Even when I've got my INR back up to 4.0, my body now has to clear the clots it made when in the flare up and this can take several weeks.

If I try and keep my INR between 4.0-4.2, then I have a much better chance of preventing it from dropping below 3.5.

I like to think of it as "prevention is better than cure". 👍☺️

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You seem to have it down to a science. Good for you! And good that you have doctors who direct treatment to you as an individual. You seem to be quite debilitated by your APS, and that has to be taken into account.

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Google warfarin!

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What do you want us to see? Does it say something about risk in APS?

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It says for the prevention of strokes- and used for APS.

Certain one can tie the two together in the case for a APS!

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I thought this was in response to a reply I sent to Leak. Looks like my reply to her did not go through. I thought you were in that thread too. Sorry. Confusing.

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No problem. This thread is too long. Mine is response to her being officially diagnosed with APS at St Tommy’s today- but warfarin not for ,” prevention of symptoms.”

She was going to put up anew post. Very sensible.

I’m not home right now so experiencing g a lag in WiFi.

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Yes, that is what happened. The thread was so long I got lost!

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Sorry if I confused anyone.

I thought my new post to veganworld, would go at the top of all the previous responses but unfortunately it went right at the end of all the other responses. 😵

Anyway, I have put up a new post so hopefully that won't be as confusing. 😊

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Ask to be referred to guys to Karen breen specialist APS clinic x

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Karen Breen backed the other doctors unfortunately but thanks for the suggestion.

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How are you getting along since this? Are you still on warfarin or did your GP refuse to continue to prescribe? X

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Still on Warfarin, my GP simply asked me what the pro's and cons were of being on warfarin and let me make my own mind up. I told him I was well aware I could get a bleed and that I took responsibility for it. I argued (very politely) after twenty years of taking warfarin it would be more dangerous to stop it. He agreed so all good .........

I am in the middle of a complaint to St Thomas's re the way I was treated.

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