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Sticky Blood-Hughes Syndrome Support
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Appointment

I recently had an appointment in st Thomas hospital. The doctor told me because I haven't had a clot I only have the anti bodies and not the syndrome. Blamed my symptoms on mental health which I think is a cop out, she had me in tears as felt like it was dismissed.

As a compromise she left me on clexane as it helps ease the symptoms which yo me that I do have aps but she wasn't budging now I don't know what to do

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I’m so sorry you had a poor appointment. I think it’s greAt news they are allowing you to remain on anticoagulants though - she can’t be that sure you haven’t got it. Who first put you on anticoagulants and for what reason? X

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Ash, I’m very sorry. This is actually very important. I’m trying to figure out exactly what this professor states her particular comfort zone is with regards to:

1. Patient Clinical Presentation and history

2. Patient’s family History ( Lupus also?)

3. APS blood panel - past and present

4. Why, specifically, did this doctor say to you that she believes you do not fit the clinical and/ or laboratorical criteria for the diagnosis of APS?

5. If there are no clear cut reasons to the above questions, what are the SPECIFIC reasons she cited for calling your case psychiatric in nature? What evidence could she have?

I’m sorry if these are probing questions, but I think you will not mind them being asked at all, or you would not have posted the outcome of your appointment!

Let me tell you why I’m so confused by this appointment and would like these questions answered.

This doctor just last month authored in a publication in Nature Reviews which APsnotFab posted a link to .

Beverly Hunt

Nature Reviews - Disease Primers 4 2018

Article number 17104- volume 4

Published online 11 Jan 2018

It was a very informative primer that did talk talk about risk stratification. It also seemed to me, in my opinion, to blend in a small way, some aspects of the original Sapporo criteria and the revised Sydney Criteria a bit. It mentioned that the addition of phosphotidylserines could possibly be added to the blood panel.

It seemed to me progress to re examine history in light of new data, and look to the present and near future with new information.

So why this conflict in your appointment? See if your original diagnosing physician can pull up this paper I have referenced. Sometimes you need to be a physician or hooked in to a university system with a medical school to access the actual primer. I don’t know if it could help you in any way, but it might.

Final questions:

Who diagnosed you originally? What discipline of medicine? And was this doctor who sent you to G&ST? This is where I think you need to bring this primer to, with the list of questions and answers I’ve asked ( and better ones which are custom tailored/ bespoke to you) and compare it.

Then ask... your list put side by side with that article.

Does it reconcile? Yes or no?

You and your original diagnosing must really look at this and ask some questions. Is it possible the questions will be about the criteria soundness, and not so much to do with your psychological soundness?

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I presented with all the symptoms of cerebral aps however my brain scan was only showing a lession on the pituitary gland which is being dealt with by the neuro.

I have lupus antibodies not the 3 that they test for. She used my bipolar as a reason for the brain fog headaches etc.

My family also have immune problems but this was dismissed. She already made her mind up before seeing any tests, the local doctor made the diagnosis of aps and put me on warfarin but the professor took me off it saying it was dangerous for someone who hasn't got aps related symptoms. She said she doesn't know the real cause of my symptoms only that my symptoms are psychiatric which should be looked at to which I said I have been stable for years so why now when I'm perfectly well in that front.

She didn't want me on any antico but I argued it kept me well and got upset as I knew how ill in get without it

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This is certainly interesting.

The auto antibodies you are testing positive to are considered to also be pro thrombotic. How pro thrombotic is the question? The answer is ,” risk stratification.” The phospotidylserine antibody is an , “ additional antibody “ I mentioned above. We were probably drawn in an Avise panel. My neurologist APS Specialist tells me she believes they are all equally thrombotic. I say, each specialist has their own opinion, and it may be patient to patient dependent, depending on these ,” risk stratifications.”

I think it’s really unfair to use bi polar as any kind of metric to claim your symptoms have anything to do with APS.

Let’s look at this another way... do you only have APS symptoms when you have a bi polar episode? But even if you did, it’s a poor metric. You may not be sleeping well for two or three days if you’re a bit manic. That could throw your antibodies/ inflammation responses into action. I see a big causation/ correlation problem here.

Also, as bi polar is a neuro chemical phenomenon ( as I understand it- it’s so complicated) - this is why I asked if you had lupus... I know it can cause neuro psychiatric disturbances also- One of Dr Hughes first APS patients was a lupus patient found wandering around London nude I believe... poor woman.)

So if the neuro chemicals are not working correctly in the brain- leadingbto bi polar- what’s to say APS isn’t at the root of it? So very little is actually understood about the mechanisms of action in bi polar. ( It’s only psychiatric in how it presents- not in its cause! Just like the psychiatric manifestations in Lupus. They are NOT psychiatric patients! They are LUPUS patients exhibiting psychiatric symptoms as a result of neurological involvement.

I propose this this could be the case with bi polar in probable APS patients as well.

I don’t want to second guess a world leading authoritity Hematologist in APS, as I am not a physician, but in reading her primer, and stepping back I do wonder where we stand.

My brother in law is one of my physicians. He is much older than I am, as my sisters are 20 years my senior. He attended many of my mothers Clotting events/ PE’s. He is not terribly active in my day to day care as he is out of town but he is a consultant GP and did admit me recently with cardiac issues. He has quite severe Bi polar. We talk a lot about it. He’s a brilliant physician- and I personally find it offensive that your symptoms should be linked to bi polar without very clear explanation of why. We can leave it there- as I know it’s complicated. )

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Thank you. I've found my symptoms are very separate I haven't had a relapse in 3yrs even through tough times I haven't so she had no reason to diagnose it as that. I personally feel she was using this as a cop out rather than looking at the proper reason. She said my local one was wrong and wants to keep me on her books to keep me from going back to her and them then putting me back on warfarin. Luckily clexane helps my problem just feel very dismissed by her. I'm seeing her next month and I really don't see the point to be honest

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Well there you have it then.

As long as GP understands you very well, and will prescribe your clexane with no problems- and this appointment with her will cause you no trouble- then why go back? But you do have to in the U.K., don’t you? In order for the GP to continue to prescribe the clexane?

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She has stated she wants to see me to see if it works to carry on with it or not however I did tell her prior to it

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Don’t go back, is my opinion, if it’s not required.

And oh thank God here comes Claire!!!!

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Sorry who is Claire lol

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Sorry, it’s leakeadea... ( so much easier to say Claire!)

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No, there you don’t have it. No? You aren’t only drawing ridiculous conclusions as if you are a doctor but your associations are absurd. Case closed: patient tells me through the internet that symptoms are taking place at a given time. Conclusion: APS-related bi-polar disorder. I won’t disagree. This is way over my head. “Well, there you have.” Why even go to a half-way respectes doctor when you have this site for solid advice?

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So u are not positive to the 3 antibodies for aps?? Just the lupus anticoagulant? And was that tested on the 2 occasions with the gap of weeks in between? I am strongly positive for all 3 and def wouldn't want to be on warfarin unless id had a clot

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Thats fair in your opinion but for me even one positive and neuro symptoms I wouldn't want to wait for a clot, I would prefer to prevent.

This is a touchy subject for weighing up bleeding/clotting when it can be so individual to us.

For Ash0507, her symptoms improve with anticoagulants, so I understand her reasoning to why she strongly wants to stay on them.

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Kelly — I also found the professor's work enlightening. It is interesting that my reading was that she has a deep and broad understanding of the syndrome. My doctors seem in line with her that neurological issues can accompany the antibodies without causing clots. In Ash507’s experience, this seemed to be discounted. Maybe we would have to hear her whole interpretation to know. So complicated, right?

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I'm so sorry for what you have just been put through at St Thomas Hospital, its not acceptable.

Can I ask, was it one of the main professors that you saw, or another female heamatologist?

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It was professor at St Thomas' Hospital.

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I thought it must have been, having read KellyInTexas' post.

It's truly worrying how things appear to be changing at St Thomas Hospital, with regards to the diagnostic criteria for APS. I do understand that they must be mindful with regards to bleeding

I don't agree with the fact that she is blaming your symptoms on your bipolar at all!

I had what were considered to be psychiatric issues back in 2007. In the lead up to my very sudden change in behaviour, I was experiencing multiple stroke symptoms however I had no idea that what I was experiencing physically, were symptoms of having a stroke.

I ended up being treated by psychiatric doctors, rather than medical doctors, who initially said I was psychotic, they then said l was manic depressant and then they threw bipolar into the mix! As such, I was forced to take anti-psychotic medications, which increased my chances of clotting!

About two weeks later I started having a sudden onset episode of head and limb jerking and involuntary movement. The psychiatric doctors decided I was doing it deliberately, to get attention! 😱

One of my best friends took one look at me and demanded they have me seen my a medical doctor. This doctor ordered an immediate brain MRI, the result of which showed multiple areas of foci and white matter lesions, some of which were in the frontal lobes, which are responsible for behaviour. In my notes it says that only usually see what had happened in my brain, in the elderly.

(At that time I had already experienced multiple episodes of PEs, DVTs and was now having TIA and stroke symptoms.)

My APS should have been diagnosed back then but it wasn't and I believe it was because I was under the care of psychiatric, instead of medical doctors.

I also believe there are thousands of mental health patients out there, who are being given some very strong and dangerous drugs, many of which cause their mental health symptoms to worsen. This is because they are being treated by psychiatric doctors, rather than medical ones.

In the past mental health issues were treated by medical doctors, not psychiatric ones and I believe this is where things have gone very wrong.

Personally I think that all mental health illnesses have a "medical/physical cause", but unfortunately mental illness nowadays is in the hands of psychiatrists. Psychiatric doctors who more often than not, are prescribing medications that actually make the patient far worse. Of course there are some medications that are helpful however I still believe that mental health patients should be under the care of both medical and psychiatric doctors.

When I showed Prof D'Cruz my brain MRI from 2007, he said that my APS had caused the micro clots on my brain and so I shouldn't have been under the care of psychiatric doctor.

I'm in agreement with KellyInTexas when she said that mental health issues have a medical cause and I personally think you should ask for a second opinion. Prof cannot override your local doctors diagnosis of APS, so don't let her.

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* I think SOME mental health issues can have an underlying medical cause.

Particularly as it pertains to this forum in particular, lupus psychosis .

Perhaps bi polar, especially if lesions are identifiable.

APS is in its infancy, unfortunately. Just look at us.... honestly. Our doctors are amazing but they are far and few between.

We women here- we share their resources with one another. Our resources with one another. What other disease forum depends this heavily and to this extent on this networking?

Should tell you just how limited in many ways it still truly is.

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Often because of poor thyroid testing, ie only the TSH, things like Bipolar can turn out to have a poorly functioning Thyroid basis. This is why among other reasons we suggest patients order their own tests. It is common with Hughes Syndrome/APS to have a Thyroid condition. ncbi.nlm.nih.gov/pmc/articl...

A panel like this would reveal what is going on, however if already on mono therapy like T4 Levothyroixine, then a Reverse T3 test would be needed also to see the rate of conversion from T4 to T3. medichecks.com/thyroid-func...

Worth doing to rule it in or out. MaryF

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That’s really good to know. Thank you for sharing this information.

Do these low mineral and thyroid values contribute to the involvement of lupus psychosis that some unfortunate lupus patients have to endure also? Have you learned anything about a connection there?

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I am not sure, but I think it is bad enough that people have serious diseases and then extra things that could be treated are not picked up, as a) the knowledge is poor and b) the testing is not good enough! However I know with vitamin D being low, antibodies can rise so that probably makes things worse. MaryF

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I'm not sure we should be mentioning drs and consultants by name in a negative way on here when we dont khow the full story and they cannot defend their name. I dont feel that's entirely fair, people can form personal opinions thru a negative experience but I dont think it should be shared like this.

Sorry!! I dont mean to upset anyone but just imagine if it was you.

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We seek to build positive accounts and reviews of individual doctors helping and supporting and educating around this condition, negative name shaming is always removed, however that is not to say we don't understand these things happen. Having seen the naming, I have now edited the post. It is fine to talk about it behind the scenes, this has been in place since the forum was started in 2011. MaryF

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Hi Mary, I completely understand why you removed the Professors name.

It wasn't my intention to name and shame, more to inform Ash0507 about my personal experience with the same Professor.

I won't repeat myself, as I have already sent a PM to you and responded to Sara_A below.

👍☺️

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It is fine, nobody has done anything awful, it is just our rules and protocol on here, best wishes. MaryF

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I do understand what you're saying and I apologise if I've caused any offence. It definitely wasn't my intention to name and shame anyone, only to share my personal experience with her.

Initially I asked what doctor Ash0507 saw, to find out if she'd seen a more junior doctor and so perhaps needed to ask for a second opinion by a senior heamatologist.

Like I said in my post, I'm sure there are many patients who have had a very positive experience with this same female Professor, unfortunately for me, that was not the case.

I am not saying anything behind this Professors back either, as she has been made fully aware of how unhappy I am about the way I was treated by her.

I think it's important to be honest about our personal experiences, good and bad and I will always share the experiences I've had with doctors and specialists, when they have been positive, including their names.

If we're not honest about the bad experiences we have had with doctors/specialists too, then perhaps in a way we are misleading other patients because let's face it, we have probably all had bad experiences at one point or another, during our journey towards diagnosis.

Sometimes in can be beneficial to know about a particular medical professionals' "demeanour", prior to the appointment with them. That way a patient can tailor their questions and perhaps approach this specialist, in a more productive way, if that makes sense? 🤔

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No I didn't take any offence at all and I spent a while trying to word it so that it didn't come across that I was having a go at anyone! I agree it is difficult as u kind of want to 'warn' other people so that they dont have an awful experience like you've have.

Maybe it's just because I'm a clinician myself, but then I'm pretty confident that people wouldn't be saying bad things about my bedside manner, (so if u are mean then maybe u do deserve it??!) as I get complaints from my colleagues that I'm too the opposite and always have my patients cry to me and they say its because they feel they can because they feel comfortable enough to but then I get way behind ha ha. Which I'm not bothered about but with my lupus my colleagues worry I take on too much!

Anyway I've diverted away from subject!

It was just really about them not being aware and being able to defend themselves as we never really know what's said and goes on, I think we just sometimes have to think what if it was us how would we feel x

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I didn't think you were having a go and you worded your post very well. ☺️

It sounds like you are a wonderful clinician, your patients are very lucky!

It must be difficult for you to take on so much however, when you have significant health issues yourself.

Perhaps that's the very reason why you're such a great clinician because you understand what it's like to live with a very difficult and debilitating health condition?

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I can only manage to work 12 hrs a wk now as I also have 2 young children! 3y and 6y, since my daughter was born 3y ago I've had a flare that's still really trying to be treated successfully so it's been difficult.

I do get very frustrated at times as I see a lot of people/patients that dont work at all and they say things to me like 'u dont know how it feels to be ill or in pain' or then another that sees me in the lift with my wrist splints on and says 'oh u shouldn't be at work if u dont feel well'

U just want to say or shout! well actually yes I do know how it feels I've dragged myself here and have to take 30 tablets a day!!

And well whilst I can continue to do some sort of work I will do, oh and btw all i got pip last wk couldn't believe it i applied in Aug 18 and it also got back paid from then!!! Got standard rate daily living am so pleased it will be a massive help for me.

Anyway thanku, I do try to be a very down to earth yet professional! clinician and will always do what I can for the person sat there in front of me before the figures on the computer! X

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I really do understand your desire to keep working and helping others but please don't do it to the detriment of your own health.

After my EDS was diagnosed, I was determined to keep working and kept pushing myself to do so and asking my GP for stronger and stronger pain meds. My GP had signed me off work multiple times but I was self employed and ran my own company and so couldn't just stop working. In the end my GP refused to prescribe any stronger medication, I was already on tramadol and back then it was only really used in hospitals for post operative pain relief. He told me that I had to make some drastic changes to my life because I was running my body into the ground and causing myself untold injuries.

In the end I did have to give up work and my business but I often wonder if my condition wouldn't have progressed so far and so rapidly, had I listened to my GPs advice.

I'm really glad to hear you have some help with pip, you deserve to have it but please try to put your own health first, don't force yourself to do stuff that your body is asking you not to do, you deserve to be taken care of too. Take good care of yourself first 🤗 xx

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I absolutely agree, leakeadea, that many if not all psychiatric conditions are caused by something physical such as autoimmune disease, and this is not usually fully investigated, and I think once it's on medical records it's virtually impossible to ever be taken seriously again. I have a relative in such a position that their life has been ruined, and those close to them severely affected. Treated with multiple antidepressants, anti psychotics, sleeping tablets, tranquilizers - you name it. With clear evidence of autoimmune disease - not treated: in fact their GP actually said to me there was no point looking at autoimmune disease as there is no treatment for it....

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That's terrible I'm sorry she had to go through that! My life too has been ruined as you say it always stays on your notes and can be misinterpreted to attention seeking well my experience anyway

She wasn't prepared to link the two and made her mind up the minute I walked in the door. I have asked yo be discharged to which she has done as see not point arguing with her so I will go back to my local one and remain on clexane

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That is absolutely awful but all too common I'm afraid. 😕

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Thank you Claire that was very helpful. I'm fully agreeing with you and what you went through was awful and absolutely not on. I told her it's not a mh problem that's causing it, I think I'm going to cut my losses and ask to be discharged back to my local haemologist in Canterbury altho she won't be happy with what's happened. I really thought she would help me as warfarin was awful I swung in and out of range constantly and felt awful too. I am on antipsychotic and mood stabilizers which have kept me well so I don't accept the mh card to which I got upset as just felt like she was saying it was all in my head so yo speak and it was real to me just not anyone else as she put it!!

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That's why I explained what happened to me. When I read the patient example story KellyInTexas has mentioned above from Prof Hughes book, my blood ran cold and I had shivers down my spine. I wasn't found out and about naked but I did go from a confident and happy person, to a terrified and confused person, practically overnight, courtesy of micro clots on the brain!

My symptoms were very real and the cause was most definitely in my brain but I was made to feel like I was making it all up, which is a horrible feeling!

Certainly there are medications which do help with certain mental illness, as you have found yourself but personally I still think medical doctors should be involved in the care of mental health patients, as well as the psychiatrists.

The medical doctors can order the right tests to look for a physical/medical reason for the mental illness. That way conditions like APS can be identified early if they're present and if necessary the patient can receive the right anticoagulant treatment, which could then prevent the patient having further clotting events.

For the professor to blame your APS symptoms on your bipolar, is mind boggling to me!

The point is, your APS symptoms are most likely all in your head but I'm talking about them being due to micro clots and/or sludgy blood, rather than a figment of your imagination! 😉

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Claire — this does bring up some big issues. I am wondering if, in your case, it was clear that your mental status changes were due to APS. That may not mean that the connection is clear for everyone. This is such complicated stuff. But my sense is the professor would take all of the factors into account to draw conclusions. I think we have to be open to the idea that she is looking at many, many aspects of a particular case to determine whether the anti-phospholipid antibodies are the issue. I am just saying that we would need to hear the whole explanation from the expert.

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Kay,

I think Ash explained it very well, and to the best of her ability. She has not had a clot, but does have a MRI verified lesion. She has tested for the ,” additional antibodies” and is symptomatic and has a prior diagnosis of cerebral APS.

Go back and read the responses that Ash has given and you will find that Ash felt dismissed a little too quickly without adequate explanation to the questions I have put forth to Ash. These are the proper APS porotcol questions .

We do not need to speculate what the professor thought- we know what she though. She thought it was not clear cut enough to give a definite diagnosis, but did feel her bi polar came into play, at least to a degree.

Kay, in England there are trends in medicine that have nothing to do with where you sit and you couldn’t quite understand. It’s a bit nuanced.

Perhaps would have been encouraging and less abrasive had the professor taken a little more time to explain herself to Ash.

It was extremely kind of Ash to share with us her appointment today. I for one felt very honored to learn from her. It’s been a rough day for her. 😉

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I think rather than continue to speculate on what doctors were thinking, you, of all people, should be aiming toward broader view. You have completely misunderstood my response. If this site thinks it is going to be helpful to be second-guessing experts in the field, when it is clear the field is changing and patients are needing a better understanding, then be my guest. I no longer think you are doing patients a service and will not be participating with your cult.

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We are certainly not doctors, nor are we cult members. We cannot second guess what doctors think. Only what they state.

We wish you well, and sincerely hope that your disease process stays , as you have stated, extremely mild.

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In my case the multiple areas micro clots to my brain, that got me misdiagnosed with mental health issues, were in fact as a direct result of my having APS and this is medically documented.

I do appreciate that this not the case for everyone.

Trust me, I have had much experience with Prof. and despite the fact that she is an APS specialist, she does get it wrong sometimes.

She failed to diagnose my APS and based her decision that I didn't have APS on blood tests alone, which were taken whilst I was on anticoagulant medication, therefore likely to be inaccurate. She did not consider my extensive clotting history, my historical and current APS clinical features, my family medical history of multiple blood clotting events and autoimmune conditions etc.

Even the best specialists get it wrong sometimes I'm afraid.

You may have mentioned it in other posts but I can't remember, was your APS diagnosed by one of the main professors at St Thomas Hospital.

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No, Kelly directed me to her through literature, and I thought she seemed to have such a comprehensive view. I was particularly impressed at her observations about people like me who are antibody positive, have not had a clot but have abnormal MRIs and neurological issues. I am really surprised she missed your diagnosis. With that said, I think it is important always to hear a doctor’s reasoning and not make assumptions. With the person presenting with a pituitary lesion, we would need to know a lot more. The Professor does say in her lecture that APS is hard to diagnose, hard to treat, but very rewarding. Guess you are an example of the hard to diagnose. But hope you are under control and rewarding to treat!

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Unfortunately she missed my diagnosis because she let her ego get in the way. All the evidence was right there in front of her to see but she didn't take the time to read it, nor did she allow me the courtesy of a two way conversation about my care or choice of treatment.

You mention that it's important to listen to the specialists and not to make our own assumptions however that is exactly what this particular professor did to me. She made assumptions about me and assumptions about my medical history and then based her diagnosis on those assumptions.

Unfortunately many doctors and specialists in the uk, make assumptions about their patients before they have even laid eyes on them, let alone spoken with them.

I'm sure the Professor has been a wonderful aps specialist for many patients however she is not exactly known for her kind and understanding bedside manner. She can be very brusque and very dismissive and in my opinion, no doctor or specialist should speak to a patient in such a manner that they make them cry.

I think if you had met her in person and experienced the kind of treatment that both myself and Ash0507 received, then you might not hold her in such high esteem.

Professor Hughes is a whole other story, he deserves to be held in the highest esteem, he is humble and kind and is always willing to listen and learn from his patients experiences. If only all doctors and specialists were like him!👍

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That is very disappointing. I don’t know anything about her as a person, but it does sound like she lacks the compassion and gentleness that we all need. Hope you have found someone knowledgeable and caring.

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It is a real shame and yes very disappointing to receive such treatment. By the time many patients have been referred to St Thomas Hospital Thrombosis Team, they are feeling quite desperate because their APS is not being controlled and as such they are living with extremely debilitating symptoms. They are looking for support and understanding and it can be soul destroying when they are dismissed and not taken seriously.

In my experience with the NHS, doctors seem to fall into two categories, those who love medicine and love their particular discipline. They are experts in their field however they lack the kind and gentle bedside manner, that patients deserve to receive when they are very unwell and feeling vulnerable.

The other type of doctors went into medicine because they want to help people to get better. They are equally dedicated to their chosen discipline however they are even more dedicated to their patients. They are kind and patient and so willing to help their patients, even if they don't have the expertise they think the patient needs, they will make sure they seek advice and redirect the patient care to the correct specialist.

My respiratory doctor at St Thomas Hospital, is one of the latter types doctor, kind and caring and more than willing to help direct my care in the right direction, even when it doesn't pertain to his area of respiratory expertise.

The professor we have been discussing, unfortunately falls into the first category.

I am still under the care of the Thrombosis Team at St Thomas Hospital, mostly because their anticoagulation nurses are wonderful and they are the ones who look after me week to week, regarding my warfarin dose and INR levels. I'm under the care of one of the younger male heamatologists and now that I have had my APS diagnosis confirmed by the Thrombosis Team, (which was only quite recently, despite being officially diagnosed by an APS Rheumatologist at St Thomas Hospital in August 2018), I am beginning to build a good relationship with this young male doctor.

In St Thomas Hospital Thrombosis Teams defence, like most of the NHS, they are stretched to capacity and I think that things can get missed and errors made because of this. However, there is never a reason to dismiss a patients concerns, or to belittle a patient, or to be unkind to them. No matter how high the status of that particular specialist is, all patients deserve to be heard and to be treated with kindness and respect.

So many APS patients in the uk, wish that Professor Hughes wasn't retired, as he is a very hard act to follow! 😉

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The problem I had my brain scan showed a small lesson which she said wasn't related and spoke 2 words about it before carrying on telling me it was my bipolar. I honestly don't know what to make of it I wish I hadn't have seen her, I was wanting more info on it as my local doctor didn't know a lot about it or didn't appear yo so I asked to see the professor and I wish I hadn't

I have emailed her asking to be discharged back to my local doc and to carry on clexane hopefully she will oblige

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It may make sense to ask her why she thinks the particular lesion is not related to your symptoms. Neurology and interpreting the brain MRIs is very complicated and they take so many things into account. She will likely be able to give you an example. You are owed one.

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Thank you Kay, for that additional comment. She certainly is owed that!

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Hi, I read all the points and concerns above and I'm so sorry you were made to feel so disappointed, angry and hurt with your appointment.

Totally understandable.

The Prof, yes does have a bruske way at times but she does listen. She is human and can have bad days too!!

I have had bad/good days with her too. I have learnt to go to her appointment with a list of symptoms, points and questions. If she's rushed I ignore and carryon politely!!

Did she dictate her report while you were still with her?

For me reading your points, she does believe you have APS, as if she didn't, no way would she continue with clexane. You both accept you've not had a clot.

You've done the right thing writing to her and hopefully you put how upset she made you! No way should anyone be left in tears. I really hope she reads your email and gives you the reply you now need.

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I am so sorry you had this experience. So many patients have, including myself. I have left a doctors office crying from the lack of support and bad bedside manners. It makes you feel hopeless. Please don’t give up hope! Keep advocating for your health:)

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To any of you, who have had a slightly edited post by me, this is due to the fact that we never by name shame individual doctors, however we do understand that these things happen, and you can tell us behind the scenes, we seek to help try and build very good care for patients with our condition, and also it is against our original rules on here to highlight individual names associated with bad care. I can tell you now that in the past I would have a very long list of names to add myself!! However I would not for the same reasons I am mentioning. I hope you all understand, however if somebody has an awful experience we do normally write to them behind the scenes and ask privately who it is, and at times patterns emerge which help us to help you all, and at times it turns out to be a one off. Thank you for your understanding, we do not want our forum in trouble of any sort.

Mary F

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Who did you see at St. Thomas' Hospital ?

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HI, we can't name and shame doctors on here, we try to build on the good reviews, that is not to say we don't talk behind the scenes at times to one another. Please understand this is part of our guidance and sensible ruling on here. Thanks. MaryF

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I’m so sorry you are going through this, and thankful for this forum and the solid information shared here. MaryF, thanks for your work in keeping it on the right side 👍

The worst thing a doctor can do to us is dismiss our story and not hear us. We go to them like children, don’t we, looking for help, guidance, understanding. It’s utterly horrible to be treated like you were.

Thankfully your GP understands that the clexane helps, therefore is needed, so he's good to have on your care team. Keep him. Not to be bossy :-). Try to stay upbeat and not get discouraged or feel like no one will have answers and help for you. There are very good docs who try their best to help.

Sending hugs.

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Thank you she has now discharged me back to my thrombosis team locally. I will take it as a learning experience and go from there, I won't see her again to be treated in the way I was as she wanted to have no antico

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To which I had to beg her for something as I get very poorly without and she compromised to give me clexane begrudgingly

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I've read this extensive thread and am appalled at your treatment I can't imagine how your experience must have made you feel.

I was initially diagnosed as having APS by Prof. D'Cruz at St Thomas Hospital. He was always kind and gentle with me and I always felt he was doing his best. Unfortunately nothing seems to help me.

I asked to be under the care of local specialists as the trek to London was proving too difficult for me.

I now am under the care of Dr. D. DeLord at QEQM, Margate and of the Haematology team at Canterbury. I truly feel that they do their best for me and that they have an understanding of : APS along with Lupus, Sjogrens and Fibromyalgia that I have.

We must live near each other - maybe we could meet sometime. It would be nice to discuss things more.

I am on Aspirin & Warfarin with an INR target of 4.

Below 4 I really suffer.

I also take clexane when I get as low as 3

I'm Luus Anticoagulant Positive

My INR swings wildly and the graph I recently plotted to show my specialists resembles a mountain range!

I think that if my INR could be stabilised, I would feel better. But despite all efforts it just won't.

My mood is not great and I often wonder why I'm here at all. I cry because I want to be well and I need to be understood but only my parents 'get it'. I feel my husband and son are angry with me and the rest of the family just can't be bothered with me. My life is empty and I can't see a future.

(Mary - I've had extensive bloods no thyroid issues etc. But my vit D is on the low side) How do we increase vit D without taking additional calcium?

Yesterday my INR was at 3.6 I had a horrendous headache and micro clots stopped me in my tracks and had me leaning on a shelf in a shop speechless until the worst passed.

I'm so exhausted all the time and my muscles really hurt, especially my leg muscles.

Do others suffer like this? How do you cope? 💋

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Fair enough.

It is just that I have been to the same department and got quite excellent service/treatment. So I can only conclude that whoever they saw was having an off day. It was never my intention to castigate or rebuke anyone.

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Hi,

This is frustrating. I have had similar experiences and know how you feel. I am triple positive and didn't have a classic thrombosis but a V1 Nerve Palsy in my right eye that nobody could fully rule out it wasn't a micro clot. I also had neurological symptoms when everything come out in 2017. 2 NY doctors that are considered top doctors for APS (I prefer not to mention names). They were very dismissive and said no clot no Warfarin. They did not look at the whole picture. All other doctors in Los Angeles and NY/NJ all thought I should be on Warfarin considering my high triple positive numbers that have been positive on pretty much every test. I did recently see another NY Rheumatologist who I thought would agree with the others there but he did look at everything and also tested my factor 8 which was very very high another marker for thrombosis. I also have positive Phospotidylserine antibody. I am very comfortable being on Warfarin in my situation. We have to be our own advocates. SO many women are not believed and we are told it's all in our head. Gilda Radner was told this when she had late stage ovarian cancer. The funny thing is that this NY top doctor said he would not be the one to take me off of the Warfarin likely he wouldn't want to be responsible if something happened. Hang in there.

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Sorry you had to go through it is very frustrating, unfortunately the person I saw was like yours and played a very dangerous game and I felt like she was going to risk the possible outcome of a clot and tried to overturn the original diagnosis of aps. I was happy to go to clexane injections rather as warfarin as I was extremely out of control and felt worse and never in range so I don't think my local rheumatologist will be happy with it but we shall see when I go back to her, fingers crossed she will be fine. Good luck with your treatment keep with it

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Like you I was happy to change from warfarin. I was never in range either, it was always up and down. I watched my diet obsessively but it didn’t help. Frequent lab draws always from the hand due to arm veins being too small. But the way it helped my migraines really gave me my life back.

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When I was in range it was wonderful however that was few and far between. I had several bleeds so I was quite happy to stop it

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Hi ,

You say you had several bleeds from Warfarin.

It is rather unusual to have a bleed from APS so I would like to ask you what your INR was at the time of your bleed. Where did you bleed and how often and what did you do about it? Are you positive for Lupus Anticoagulans?

How often did you selftest? How often did you doubletest in the vein at a lab?

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I only has a small bleed in my bowel my irn vein reading was 9.4 and it stoped on it's own. Yes positive to lupus antibodies. I didn't self test as I was so out of control so was at the hospital every week

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