Diagnosis of Hughes no longer relevant - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Diagnosis of Hughes no longer relevant

Splodge60
Splodge60

Hello everyone on this APS support group. A few months ago it was suggested to me that my clotting/bleeding problems, could be explained by Hughes syndrome/APS. I dutifully proceeded to research this topic and thus became absolutely convinced that my problems were caused by this drug. I obediently followed forum members advice, and saw my GP plus a well qualified Haematologist who kindly carried out a large no of unusual blood tests. He rang me yesterday, a pre-arranged appointment. His verdict:-

All my bleeding and clotting problems have NOTHING to do with APS and there are also no genetic components either. Despite all my ten or twelve abnormal blood results done this last week, none are serious or worrying or serious enough to carry out any more interventions or tests on my bloods other than the usual ones for liver/diabetes/metabolic syndrome. I am “JUST GOING TO HAVE TO ACCEPT THAT WARFARIN IS THE CAUSE OF MY EXTREME BLEEDING ISSUES, but, I must stay on Warfarin for the rest of my life”. He made it clear I have no other choice. I have taken it for 24 years due to several repeat DVTs plus PE. I changed to Apixaban for 3 months last year but it didn’t hack it for me. 3 years ago I started bleeding heavily through my mouth every morning on awakening. That has now increased to twice a day when I half fill the bathroom sink with extreme blood clots and stringy stuff, plus many times during the day as well! 3 weeks ago I started seeing blood upon weeing in the toilet. After taking 2 or 3 jars of pure red blood with little urine, to the GP, I had a quick Cystoscopy on my bladder yesterday. The surgeon took quite a while to clear the frank display of blood before he actually saw (I assume) what was possibly the outside of my bladder and,NO SIGN OF CANCER!!!!!

I do not wish to have cancer. I’ve had it once, plus a mastectomy. I was a bit surprised to find my old mastectomy scar covered in a huge bruise of irregular shape, only slight pain and not caused by trauma!!! Health Practitioner was baffled but also convinced it was essential for me to continue taking the Warfarin. Are they not allowed to coat the drug with chocolate?????

So, this is it for me, this is my quality of life for however long, to add to the myriad of co-morbidities that make life so very hard. So I will leave this Forum for now, unless a meaningful alternative becomes available to treat me other than the joys of taking Rat Poison for what has become to me a very serious and horrible outcome that is not of my own making.

54 Replies
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lupus-support1
lupus-support1Administrator

I am so very sorry to read your message. I can’t imagine what you have gone through. Although no one here can offer a medical fix, this is a safe place to talk. Isolation is not good and unfortunately, made worse by covid-19.

It's OK to be angry/sad/anxious/depressed or whatever - but not alone. I am certain, everyone can relate to your experience in some form. Whatever you decide, know you are always welcome here.

With good wishes,

Ros

Thank you so much. Your words are so appreciated believe me. I have nowhere else to go other than other forums which HU cater for and in my case that includes the British Liver Trust plus Diabetes.

MaryF
MaryFAdministrator

I absolutely echo the reply you have had from lupus-support1 we are here as a 'support' forum, and hopefully you will still find this, a safe place to be, if and when you want to be on here. MaryF

Splodge60
Splodge60 in reply to MaryF

Thank you MaryF. You are all so kind to me. I must admit, when I realised the finality of my situation, all my negative’default’ mechanisms came into mind. It’s been a really awful week and it is not over with yet.

HollyHeski
HollyHeskiAdministrator

I echo my admin replies and you are welcome here, we will also listen.

On another side please ask your haematologist the question ' as im bleeding so much on warfarin, should I not reduce my INR levels?

You still shouldn't be suffering the way you are xxx

Splodge60
Splodge60 in reply to HollyHeski

I don’t believe I should I should be either but, that is where I’ve been left, with no hope of an alternative I solution and no explanation from anyone who can suggest what else I can do. It is so disheartening and frustrating. I’ve been fighting back tears ever since I realised what the medics have told me, not just one but several. My family and friends all tell me to stop searching for answers and get on with living life. They don’t have all my problems and try as they will, they cannot walk in my shoes xxx

Just out of curiosity-were the three tests for APS done in your raft of recent blood tests? The other thing is what's your recommended INR value? Too high could also cause odd bleeding. I usually don't tell people all my problems as most just tell me I look really well! This doesn't help at all while I wait for another (at least) 3 weeks for my broken ribs to finish healing. The only good thing is it's enforcing my lockdown at home while I still can't walk without a fair amount of pain.

It all gets too complicated :(

Splodge60
Splodge60 in reply to Ozchick

Thank you for your reply and questions. The APS tests were done once in a raft of tests done by Haematologist. They were much different than the ones done usually by GP and Liver Man. He made it clear that he would not be doing anymore and discharged me over the phone. Recommended INR range for me is 2-3 and has been the same for years xx

You are certainly correct about misunderstanding what you are going through. Only yesterday someone kindly informed me that I look very well when I felt so poorly xx

Ozchick
Ozchick in reply to Splodge60

One of my GP's I see will look at me now and say 'Gee, you look like sh**t today!' when I go to see her and we will have a laugh if I say 'Yes, 5/10 today'.

Generally APS tests are done 12 weeks apart and often will not have the same results twice. eg- one will be -ve and the next +ve. If your INR's are generally stable is it worth having a trial of LMWH -Fragmin or Clexane for a month or two to see if things change?

I am lucky enough to be fairly stable on Clexane and put up with the twice daily jabs to feel OK. Unfortunately they also do not come choc coated! :)

Dear Splodge 60,

Is your Hematologist not worried that you are bleeding? Who gave you the prescription of Warfarin? If you have got the diagnose of APS correctly the Warfarin is the best drug for you. Yes I also did not want to take it as it was ratpoison. It has been my lifesaver. Ask for copies of all your bloodworks done.

If you are bleeding from Warfarin you should reduce the INR-levels. My INR should be between 3.5 - 4.0. What is yours?

Congratulations for not having Cancer!! That is something to be happy for I think.

Kerstin

Splodge60
Splodge60 in reply to Lure2

Hi there Lure2,

I was given Warfarin for the first time, 24 years ago by some Clinician or other in Newcastle upon time after my 2nd DVT and 1st PE.

My INR is 2-3 and has rarely, if ever, changed, in intervening years.

Yes I am happy not to have a recurrence of cancer. I was not happy to hear this was even feasible.

Having now had my 5th or 6th DVT on the same right leg, only in January this year, I am absolutely fed up of taking Warfarin especially now the Clinicians are ‘hinting’ that it is not doing its job and I know for sure it is not. In 2002 I moved from the North East to Lancashire where, having had a quota of blood tests at the ‘new patient’ clinic, I learned I had Type 2 Diabetes and the extreme version of Fatty Liver (by Biopsy), called NASH. In 2003 when first diagnosed, nobody had a clue as to my Liver History, prior to this time. So who knows when it actually started, I could have had it years and years at that point!!!!!

It is now August 2020 and my health has deteriorated dramatically. It was only because I pushed and pushed the Liver man to do a Fibroscan. It seems I by-passed Fibrosis altogether and at some point thereafter, my diagnosis became Cirrhosis of the Liver. Again I was informed xx. Ccccc xxxxx xx I would be followed every 6 months to see how it was progressing. The Haematologist doesn’t seem to care about the bleeding, nor indeed do any other clinicians

Lure2
Lure2 in reply to Splodge60

Hi,

I must say I can not understand; It sounds like you are treated like you do not have APS as to the low INR 2.0 - 3.0. Many people without APS who have had an heartattack or a Stroke are put on Warfarin with that INR-values. A Hematologist who is knowledable about blood-issues should not dismiss you but be interested why you both clot and bleed.

You see we have almost everyone here on this site for APS, have had to take a real fight to get first of all a Specialist, who understands our symptoms because he or she works with those people every day and other autoimmun illnesses like Sjögrens and SLE and Thyroidea.

Then we have had to fight to get the correct anticoagulation for our sticky blood. Prof Hughes always said that we do not bleed from APS but clot a lot.

You have had both clots and bleeding. Has this Hematologist really said you have got APS as to your twice positive antibodies?

Did you have positive Cardiolipinantibodies and/or Beta-2-Glycoprotein 1 and/or Lupus Anticoagulant? You have said that you have done a lot of tests. These three is it about and they should be taken twice with 12 weeks between the blood-draws. This is important to know if you have got APS. Ask for COPIES! They look for the positive antibodies and also for symptoms typically for Antiphospholipidsyndrome.

Wish you could get such good Specialists that i have got in Sweden. I am 76 now and you are just a kid (70). Hope I have helped you a little. I am not a Doctor but I am interested in APS. It is important that you do not have high bloodpressure.

Good Luck. Do not give up. You write excellent about your different symptoms and we learn so much.

Kerstin

Splodge60
Splodge60 in reply to Lure2

Thank you

MaryF
MaryFAdministrator in reply to Splodge60

Is it possible that you could save up and go to The London Lupus Centre I had to do that years back for myself and my children to get my proper care back on track, message me if you feel you need to do that. MaryF

I am really sorry to read your dilemma. You have written very eloquently may I add. I hope you will come back to this very supportive forum. Glad to read you don't have cancer. I am just thinking if you are seeing and spitting blood daily surely someones needs to keep an eye on your iron levels. I suffer from low iron from time to time (nobody knows why) and I get quite fatigued and very low mood when it happens. I know its frustrating when nobody can give you an answer, I have been there and you kind of feel whatever it is at least if I can get a diagnosis I can have some idea of how to deal with the situation. It's like there is nobody there to catch you. I assume re your bladder they have ruled out any infection which also causes bleeding. Many years ago I used to work at a dental surgery and the dentists used to chat when we all had lunch together about various things medical and they always used to say it surprised them when people got blood in their mouth that they didn't come to see them as its not just teeth they specialise in. Maybe somewhere to go for another opinion. If none of this or the above replies are any help I do at least hope you stay with us all so you have somewhere to let off steam.

Very best wishes

Kaz xx

Splodge60
Splodge60 in reply to veganworld

No bladder infection, no Hughes/APS and no other explanation.

veganworld
veganworld in reply to Splodge60

What a mystery, I feel for you and hope you do get an answer.

Kaz x

lupus-support1
lupus-support1Administrator in reply to veganworld

Anaemia of chronic disease is common. Lovely response.

I did not know hat thank you for responding.

Kaz

KellyInTexas
KellyInTexasAdministrator

Wonderful news on the cystoscope showing no signs of cancer-

Important to find joy in all the good news we can, I’ve come to learn over the years of chronic illness and numerous difficult surgeries.

Hope I’ve understood you correctly there...

I don’t know what to tell you about the bleeding other than you say your hematologist is well qualified so I’m sure he/she will be looking out for you.

All the best- and hoping GP will keep a good eye on you.

Haematologist has discharged me, GP doesn’t know what to do with me. Liver man seems indifferent. Heart man is now suggesting I have Aortic Stenosis but ‘wonderful’ arteries for a 70 year old!!!

lupus-support1
lupus-support1Administrator in reply to Splodge60

Please take this seriously. Any pain or shortness of breath, you must contact your cardiologist.

Please be assured that I am taking the whole of my situation very seriously. The Cardiologist is sending me for an Echocardiogram within next 2 weeks. Believe me when I say that one flippant remark in the midst of all this constant drama, does not equal the hours, days, weeks and months I have spent sobbing my heart out in sheer frustration, worry, pain and yes, anxiety simply because medics generally cannot or do not regard me as worthy of their time and further investigation into the whole sorry story. I am having to do my own research, my husband is having to struggle to stop trying to ‘fix me’ because we know he can’t. The heart man rang me at home yesterday and he was one of the ‘kinder’ ones, which, believe me, is such a bonus. I do appreciate your concern as well.

Lure2
Lure2 in reply to Splodge60

I am happy for you that you will get an Echo on your heart. Stay with us and let us know how it goes for you. Do not forget to ask for copies of all your bloodtests done. Can be good to have in the future to show other Specialists and the Cardiolog.

Kerstin

Splodge60
Splodge60 in reply to Lure2

I am having the Echo in the morning!!!!!

Sounds horrendous what are you going through - comments about the INR check echo what I was going to say. Hope you find a process that helps to make you feel better.

I would not give up and would insist they help find a solution. It is criminal to discharge you.There must be a reason why this happening.

Splodge60
Splodge60 in reply to Fra22-57

I agree, there must definitely be a reason but I have not yet found one medic who is able and/or willing to dig a little deeper or search things a little more. Most patients would have given up long since because :

a). They consider medics to be all knowing experts.

b). They would never think of challenging the competence of either GPs or Consultants

c). The ‘Medical Model’ which drives all current thinking in medicine, is not ‘Fit for Purpose’. WHAT DO I MEAN???

d). In the past, people would attend a surgery due (in the majority of cases), to symptoms they are having with only ONE specific disorder. Nowadays, however, it would probably be unusual for someone to have merely one disorder. It is quite normal now for a lot of (especially elderly) patients to have several health issues at once, with multiple co-morbidities and requiring input from several specialities.

e) the NHS does not cater or make allowances for this contingency.

f). So, you get a lot of either very submissive patients who believe everything the doctor tells them, or many frustrated, angry patients who feel completely let down by medics they do see. Most of us will sit somewhere on this continuum, but, in all cases the “Duty of Care” that medics are supposed to abide by, is either not relevant or not realistic. That is why I emphasise again that the Medical Model that doctors have stuck by for many, many years is no longer applicable.

g). Medicine in general must begin to move towards a more well-rounded approach, so that if one, like myself, has many different problems/diagnoses, there will be more of a ‘Team Approach’ input and someone who can be trained specifically to ‘join up the dots’ for individual patients needs.

h). It is cruel to patients to send them for a specific test (which looks like for one diagnosis ie cancer). When that is ruled out, then that specialist discharged you. However, nothing has changed. In my case bleeding in the bladder ruled out cancer via Cystoscopy. End of the Urology involvement!!!!! But, the bleeding continues. Your GP should pick up your broken pieces but does not because she thinks she has helped you (by sending you to Urologist). Unless you complain of that symptom again, nothing more is done by her. As you have another problematic symptom by then, and have got used to that bleeding, there seems nothing but indifference coming from that source!!!

Does that answer your question?????

Fra22-57
Fra22-57 in reply to Splodge60

I agree and have come up against haemotologists that dismiss.others give crazy answers then another gives something else.Google gives better answers than some doctors ! Thing now is diagnosis over telephone as due to covid as they cant see you.wish you well😊

Interesting and so true to read what you write! Especially with our illness APS, all our body can be attacked. Have they ruled out that you have got APS now for sure (Antibodies + symptoms)?? What did that Hematologist say about your bleeding?

Splodge60
Splodge60 in reply to Lure2

He more or less said I just have to ‘put up with it’. Also, he has definitely ruled out APS on the basis of one lot of blood tests!!!

Lure2
Lure2 in reply to Splodge60

So you did not have any of those three bloodtests we always do to confirm APS, positive??

Splodge60
Splodge60 in reply to Lure2

I had all three tests done but only ONCE xx

Lure2
Lure2 in reply to Splodge60

If the first bloodtest for the 3 antibodies are negative (all 3 are negative ) they do not do a second test.

Was the first bloodtest for the 3 antibodies negative as they did not do a second one?? Important to know. Do you have got copies of all the bloodtests done?

Splodge60
Splodge60 in reply to Lure2

No I have not yet got the details about whether they were neg or pos. I will chase it up xx

Lure2
Lure2 in reply to Splodge60

Yes do that cause that is very important. Ask for copies and if they are positive you should take another bloodtest (the same 3 antibodies) a second time after 12 weeks time.

Good Luck to chase it all up.

The time for the Echo (early morning or late afternoon) has no importance. It is easy done.

I can’t begin to tell you how sorry I am for all you’ve been through and are still are!😞 Don’t leave the group, as we can and want to be the there for you and for one another for support. Everyone of us needs help or someone to talk out our feelings with from time to time, and this group is great because we understand. Isolation is not the answer. I’m curious to understand why you’d have to stay on the warfarin if it is causing these issues for you?

Splodge60
Splodge60 in reply to hihannula

Thank you. I had the Echogram yesterday. Took nearly an hour. She (the Technician) also checked my aorta!!!!!! Didn’t do that before. Wouldn’t it be strange if all this bleeding was heart-related. I already know I have Aortic Stenosis. Before leaving she said I would get the results within a fortnight.

I don’t want to moan but I feel very unwell this morning. Some days are like this. Thank you all for your continued interest and concern. It is much appreciated.

You have the right to moan, I’d be hysterical by now. I’m shocked that you’re losing so much blood from your mouth! I don’t take Warfarin so I don’t know if that’s a normal thing to happen. Try to be positive if you can.

It was bad enough when it was/is just from my mouth but now, the additional blood loss through my urine is getting to be just too much. For the very first time I am seriously considering going to the nearest A&E. However, I have some family issues to sort out first, which are equally as crucial. I will keep the Forum up to date. Thank you.

HollyHeski
HollyHeskiAdministrator in reply to Splodge60

You really need to keep having your bloods checked, losing that must blood, can effect do much more like your blood count, iron etc.

Please get your GP to run these routine bloods?

Please keep us updated on these recent tests. Again I am sorry things are so hard for you! It really isn’t fair.

Splodge60
Splodge60 in reply to hihannula

Will do

Hey Splodge. Don’t leave the forum. We are all here for you no matter what. I sent you a PM in case you left the forum.

Splodge60
Splodge60 in reply to Jmiller623

I was admitted to hospital yesterday. Nurses are now fully aware of blood loss. I just hope the doctors learn of it too, and see what can be done about it ???

Splodge60
Splodge60 in reply to Jmiller623

Thank you

Jmiller623
Jmiller623 in reply to Splodge60

No problem. I just hope you find some answers. My PM just asked if they tested for factor inhibitors which can be acquired over time esp of you’ve had infusions. Just a thought.

Sending hugs ❤️ xx

What diagnosis did they give to you for admission and how are you doing today/thinking of you🤯

Splodge60
Splodge60 in reply to Wittycjt

Diagnoses for this overnight admission was - Transient Global Amnesia

KellyInTexas
KellyInTexasAdministrator in reply to Splodge60

Amnesia? Are you still in the hospital Splodge?

Did they figure out what to do about the blood loss?

( APS can cause memory issues...)

They have given me some iron tablets for Iron deficiency Anaemia.

Sorry I didn’t answer everything. I was only in hospital one night as the problem went away next day. The blood loss is still an enigma which they continue to ascribe to the Warfarin. I should add that I have lost just over 9Kg in last couple of months through eating hardly anything as I have no appetite at all, keep on having hypos due to DM type 2. They’ve now added heart issues in the mix. Mostly it seems to be valve issues (Aortic and Tricuspid). That’s all I know currently.

Lure2
Lure2 in reply to Splodge60

Hi again Splodge60,

I wonder if you have got APS..........(?) they should redo the bloodtests (only 2 because you are on Warfarin) I think.

I can tell you that I have Tricuspid- and Mitralis-insufficiency. Those heartvalve-issues go with APS as a rare symptom!!!

Bad memory goes with APS as Kelly in Texas already told you.

KellyInTexas
KellyInTexasAdministrator

I had a quick read of TGA. Interestingly, in its earlier history it was associated with ischemia and TIA. As a lay person with personal patient knowledge of APS, I have to wonder if this isn’t still the case in some patients.... such as yourself with known antibodies.

I still can’t understand completely the bleeding from mouth- I can tell you ( at risk of sounding like a broken record ) ...

You must see specialist in APS if you want to get to the bottom of this. You must see a specialty hematologist and you will need to pay privately to do so. I suggest a Prof Hannah Cohen in London.

The advantage is she will also be able to a differential diagnosis. Or... she will be able to tell you why it’s not the APS antibodies causing the issues. ( or how the history of the antibodies in your system plus prior clotting events dies not warrant a current life long diagnosis.)

She might have another opinion all together.

I do believe you would come away with a plan you would have faith in. It would address your anemia. She would check your ferritin levels to make sure your storage capacity is in place.)

With Your liver issues this is very important.

She is my APS specialty hematologist. My hematologist wanted me to see her for her expertise! I traveled all the way from Texas for an appointment.

She is fast, precise, and laser focused.

She will guide your current GP and hematologist to the plan you need, and it will include any measures for APS and anemia you need.

Otherwise I feel you still have too many question marks in your continuum of care ( with APS antibodies flagging and clotting history) not to have a specialist weigh in on this.

That the broad picture. It remains the same despite small details I may have gotten incorrect. ( I have very poor vision- please forgive- reading is starting to trigger migraines- a new trick my body is pulling in the last three weeks with more frequency.)

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