I’m sorry to be a huge pain but I am on several other HU Forums, not because I do or don’t want to be but because I’ve just learned of yet another diagnosis which medics have found. I just can’t believe it. I’m scared to go anywhere near a surgery, clinic or hospital in case they find anything else.
My latest diagnosis is APS, which, when added to the NASH, Cirrhosis, Insulin dependent diabetes type 2, Metabolic Syndrome, Diverticulosis, and loads of other stuff, I’m too tired to remember them all now, is just getting too much. As I started last week with frank blood in my wee, that maybe is another reason to add more diagnoses to my woes. Could it be kidney or bladder cancer - I ask myself??? Surely not?????? I’ve already had cancer 20 years ago, and had a breast removed because of it.
So, I know nothing of APS, other than, being on Warfarin for 24 years , my body is now saying - enough is enough!!!!! All I really would like to know at this late hour, and from those who’ve trodden the same rocky road as myself thus far, is the following:-
Q. Does APS cause blood in wee, along with excessive bleeding from mouth, every night and morning, even when INR is within range for me????? Or, could one of the other health issues I have, be playing a part? The daily mouth bleeding is getting worse and now it’s in my wee. The former started 3 years ago and the latter, about a week ago?????
I spoke to my GP this (or yesterday morning now), and, to say she was not helpful, is putting it mildly. She was more interested in my (mental health status), which just irritated me!!!!! This, despite I have a history on that topic as well!!!!
All I ask of you, when you get up later on and read this over your Weetabix, please do not prejudge me, please don’t think I have an obsession with wanting all this stuff. I hate where I am, I have no quality of life, I feel dreadfully sorry for everyone struggling to have health issues explained by a biased and prejudiced medical profession who, as soon as they hear you have or have had some kind of mental health issue, patronisingly then exclude all explanations beyond their perception of you, which unfortunately, is usually negative.
If you feel so inclined, most of my input to HU is via the Liver Trust Forum which you can read whilst listening to some relaxing music!!!!! You may get more help and insight about some issues, by reading exactly what I have had to put up with. At least I hope it helps you in some way????? I’ve yet to understand more of what APS is all about!!!!! That’s going to take sometime methinks!!!!!
Thanks for wading through all this xxx
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Splodge60
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Hi, please tell us where you are located, as both yourself and your GP need to be guided by a designated Hughes Syndrome/APS Specialist, and we do have a list collated by various patients and groups over the years.
Be aware also that with this disease it is not unusual to have low Vitamin D, low B12, low Ferritin, low Folate and a Thyroid problem, often missed as the testing on the NHS is so scanty. A lot of us order our own tests on line, which shows more accurately what is going on with Thyroid and B12 issues, an untreated Thyroid, left undiagnosed for years can cause severe depression and other similar mental health issues, also it can contribute to a fatty liver and gallbladder problems, and of course Diabetes. ncbi.nlm.nih.gov/pmc/articl... I was told for fifteen years that nothing was wrong with my Thyroid, once I did my own test it was all revealed, and with some very good advice from Thyroid UK, which is a very good charity, and they also have a forum on this platform. MaryF
I’m sorry for not replying earlier to yourself and all those who took the time to ask me questions. I’ve had a few very difficult days (to add to those before). Let me explain -
I mentioned the blood in the wee. Well, the medics seem to have sprung into action and I’m struggling to keep up with everything.
Next Wednesday I am due to visit the Urology Department for a Cystoscopy and Consultant in Urology to see me as well. They now suspect bladder cancer!!!! This is my 6th visit for a fast-track cancer check and they have all been negative. What is the point. The blood in my urine is recorded as +++ which, seems to be the first sign of bladder cancer. I’m really going to pour out my heart and soul about today, if nobody minds.
I don’t want another invasive test or another diagnosis or another visit to the hospital, just for them to get it wrong once again. I just want to curl up on my bed and sleep and for this nightmare to end. I’m not about to do anything to harm myself, so please don’t worry about me. My husband was so excited yesterday as he was going to have his ‘second’ Corneal transplant. He got home at 3pm, knowing nothing of my current situation. He came in the house, hardly spoke except to me, except to say he has to lie flat on his back for 5 days, then he disappeared, and the friend who had picked him up from the hospital, disappeared home as well. So, since that time I have been over-stressed due to worry about how I am going to look after him (cook food and get it to him), when I feel absolutely abysmal myself. I haven’t got one ounce of energy and am unbelievably exhausted. I then got an unexpected call from someone asking how we were both doing? I just burst into tears (which is pretty much all I have done today)!!! I even rang a usually patient friend but she didn’t like my tears and kept telling me to stop crying. Then I felt she started to criticise me and that was just too much. I’ve been waiting all day for my daughter to ring. She came back from a week away but she lives over an hour away. She’s probably forgotten. I’ve got loads of paperwork in front of me that I need to sort out. I can’t face doing anything other than write to you. One of your questions was about my APS Specialist. It is a Haematologist who is at Preston Hospital named Dr Grey. He is phoning me on 11th August. The information I got was from a Nurse Practitioner, who told me what she knew. I know she shouldn’t have, but, frankly she was so kind to me, compared with most other medics I’ve encountered on this horrible journey, other people just attribute everything to my mental health. My history of that has mostly been about depression but, I’m afraid that Anxiety is way out in front now.
I’m truly sorry if I have gone on too much. I’ll try not to do it in future.
If you can afford it, I would consider ordering your own private Thyroid tests which are very accurate, a lot of us have done, that, if you need to do that I can find one for you, also, it is crucial that you have a specialist who understands fully this condition, here is the list, there are plenty more in Yorkshire and Manchester, but for now there are these:
Dr Bridget Griffiths Consultant Rheumatologist Department of Rheumatology Freeman Hospital Freeman Road, High Heaton Newcastle-upon-Tyne, NE7 7DN Telephone: 0191 213 7978 Dr Richard Reece Consultant Rheumatologist Department of Rheumatology Darlington Memorial Hospital Hollyhurst Road, Darlington County Durham, DL3 6HX Telephone: 01325 380100
It is not unusual to have bladder problems with a poorly functioning Thyroid, unfortunately many of us are missed due to the appallingly narrow testing that goes on, which is why some of us save up and do our own.
I would also suggest you ask the GP for some counselling or support if you are feeling very bad coping with all of this? Or at least confide in a friend or something, perhaps a different one? MaryF
I do now have a Counsellor who is brilliant but I feel I would be presumptuous by contacting her in-between sessions. I should say I do not make a habit of shedding tears so freely but, today was just ‘too much’.
Hi, I'm not sure whether your heamatologist is an APS specialist?
Many of us have multiple symptoms and problems and need an APS specialist to join all the dots and look st the whole body!
For me my haematologist over the years has sent me to her colleagues that have covered the liver, gynea, heart, brain, pancreas, rheumatologist etc.
APS can affect anything. I have 3 autoimmune diseases, all monitored by my APS haematologist.
I suggest you have this weeks tests done for the bladder and your follow up call with your haematologist?
In the meantime write all your health issues out, with symptoms. Any family history of autoimmune diseases, that way once you can see an APS specialist you will be ready with all the information. Hopefully then all the other specialists can be kept together.
Was it a Specialist of autoimmun illnesses who diagnosed your Antiphospholipidsyndrom (APS)and did that Specialist also said you should stay on Warfarin? May I ask why you have been on Warfarin for 24 years?
If you have APS and also eat Warfarin it is very important that you have a Specialist who is responsible for your doses and therapeutic range of INR. We have too thick blood and very seldom get a bleed from our illness but clot a lot. Hope you stay with us so you can understand what APS is about.
The problems I am encountering at my GP surgery include the following:-
1. They put diagnoses on my medical record online (patient access), without discussing same with me. This happened twice, firstly with Cirrhosis and secondly, more recently, with diagnosis of saying I only had ‘months’ to live. I had to wait 4 months from seeing the diagnosis of Cirrhosis online and waiting for either the Consultant or GP to deign to speak to me about it. I eventually complained. When challenged/questioned about having only months to live, they took all reference to it off the site. Fortunately I took a photograph of it prior to them doing so.
2. I find my own personal GP always asks me why I am attending, even when she has asked me to go. She also ‘plays dumb’ and implies she doesn’t know about such and such a problem, so wastes a load of time reading through letters she seems to have no knowledge of. Is she playing some kind of game.
3. That same GP always asks about my mental health before everything and she always puts it down on all her letters, as if it was my most important problem. It is becoming so, due to the way she treats me.
4. Another ploy she uses is to play down all my serious physical stuff as if it is not important to me. So, despite putting me on record as having only months to live, she is now saying that is not important, I may live for years, and I am left dumbfounded by all this and other contradictory information. Is it me? Do I detect a certain patronising attitude towards me or, does she genuinely not have a clue about any of her patients. After all, she is the Senior partner and the notion of ‘Duty of Care’ seems to be totally irrelevant when it comes to me. However, any paranoia I may be alluding to by me, is countered by the knowledge that I know for sure, many other patients are being subjected to the same (lack of) treatment, by GPs up and down the country.
5. Another really frustrating thing is finding the number of administrative errors on my record is just unbelievable. I have just downloaded a copy of the letter and report sent to a Urology Consultant whom I am due to see on Wednesday. We have never met and, all he has to go on, is said information, in determining how I really am physically and mentally functioning which is hugely skewed simply because not one GP has taken the time to establish how things really are for me. Obviously the skewing is toward implying that mental health is a greater causative factor in my physical health than the other way round. Am I therefore imagining heavy bleeding from my mouth (which I’ve had to take photos of as evidence), because largely I am not believed. The two week rush to get me to the Bladder Consultant was precipitated by the gross blood in my urine, which they couldn’t deny or ignore!!!
My friend who didn’t want me to cry on the phone tonight, keeps on telling me that I must not look at my records online. She wouldn’t do it and cannot comprehend why I would want to. Well, all I can say is that, without doing so, I would not have discovered 12 diagnoses over the years that GPs have noted on my record but never discussed with me, including the Cirrhosis. I would never have learned about how medical staff bias and prejudice is still very much alive and kicking, if you have a mental disorder. I could go on forever.
All my ‘notes’ and ‘evidence’ of how I have been treated, especially in the last 3 years, is not going to be ignored or neglected. It’s too important for that.
I do hope that, during all this waffle, I actually answered your question. Thanks.
I am sorry you are having such an awful time, you are not the first on here, to be treated like this, one GP practice I used to be with, were similar with my various disease, a terrible attitude. MaryF
I started on Warfarin in 1996 due to DVT (second one) and PE. The first was in 1993. I was an inpatient on a mental health ward on both occasions, spending most of my days laying on a bed and ‘vegetating’.
I’ve continued on Warfarin ever since, except for a 3 x month trial on Apixaban. Because of my Liver and other health issues, the Apixaban was not continued. I have now had 5 or 6 DVTs on the same Right leg, which is much bigger than the left. The latest one was in January this year. Again I was in hospital for severe pneumonia at the time.
I hope this answers the question someone asked about this?????
Hi, you are welcome to spill your feelings here and your not being a pain.
Your physical and mental health is exhausted and you need more help at home.
Bleeding on warfarin is something your haematologist needs to know about.
Is it possible to try and see them before 11th August, if not get a call or email through to them earlier?
Your GP needs to understand your physical health problems are real and need attention, this lack of help is whats causing the 'mental' health issues, many of us have been made to believe it's all in our heads etc - you are not alone, we do understand.
Mary's suggestion of getting your thryroid privately checked is a good idea, they usually check along side your ferritin and B12.
Thank you and thank you to everyone who has been so kind to me on these forums. Does the Hughes Syndrome forum work in exactly the same way as the Liver forum, with regular monitoring and a variety of rules? I don’t mind. In fact I think they are essential when dealing with the precious stories of such important stuff?
To answer your question, we are all under “HU”, or Health Unlocked. We follow their guidelines, and really it’s tried and true for the most part and keeps the forum running Smoothly and most importantly- informatively.
The thing to remember, is we are a collective group of very well meaning individuals who come from a varied background. We can’t spend valuable time monitoring and “ policing” posts when our time should be spend providing information pertinent to the forum’s aim: providing information and support regarding APS.
First and foremost- it is meant to be educational. We do not want to dilute its impact . ( we do not want to become a face book page about kitty cats - although we love our pets and couldn’t do without them🥰❤️- nor do we want angry negative energy about politics or any other sort.)
We want to focus on YOU... and your health 🥰... for the most part- you get the idea.
The one I regularly do, is on Medichecks and the particular test is called: Thyroid Check UltraVit Blood Test I think it is around £99 and sometimes on a Thursday there is a discount, if you have a nurse friend that can take your blood, then you don't have to pay for the blood draw on top, you can order the test as a finger prick, but you have to be very patient to do it, sometimes I have managed it. MaryF
Maybe I can help address a little bit of your anxiety about APS.
You mentioned you found out why you had been “ bleeding”- due to APS. This is not technically accurate.
You also say that basically there is nothing to be done ... well, actually there is. Although there is no cure, there are ways to manage it. We just need specific and accurate information from you to be able to help you.
Not sure quite what this means, the bleeding business. Is INR too high? Could you have ITP? Have your platelets been checked?
What you described is not the normal experience with APS - unless the inr is too high.
You simply need a hematologist with expert knowledge of APS .
I saw that you are on Warfarin because a lot of DVTs and PEs. You have been for 24 years on Warfarin.
Some Doctor is responsible for your Warfarin-treatment and i wonder who that Doctor is. What therapeutice level of INR has she or he decided for you? Do you selftest?
An INR between 2.0 - 3.0 is not a very high INR-level for APS and having DVTs and PEs and clots. As you have had a lot of bleedings lately have you had very high INR the last weeks? How often do they test? Is it in the vein at a lab or by fingerpricktest only?
Finger prick test. No high INR recently. Going for Cystoscopy on Wednesday for ? Cancer of bladder due to Gross Haematuria and no infection. I test once a month whilst in Range but more frequently if out of Range.
You need some Specialist (probably a Hematologist) who will take care of your APS as to Warfarin and INR and testing.
I can tell you that I need an INR of 4.0 to be without symptoms. I selftest and a only a blood-draw in the vein is to be trusted as to the INR. Usually the fingerpricktest is a bit higher in INR. It can differ quite a lot.
I test every second or third day but you test in the finger once a month (!). That is not acceptable ! They should test you in the vein at a trustable lab and also give you something like a Fragminshot when the INR is too low.
They treat you as if you do not have APS. Do they know that you have got APS?
This diagnosis of APS has come to me second hand from a really kind Nurse Practitioner. My GP will not confirm or deny it. I guess if she told me she would be stepping on the Consultants toes. She has ‘played down all my troubles’ so far. When I saw I only had months to live online, and then tried to talk to her about it, she ignored me and removed it online. Fortunately I took my own copy of it. I just do not trust her or the liver consultant either.
I am sure you can! You write so well about your situation so take a fingerpricktest at the top of one finger would be very simple because it is very simple. But first of all you must find out if you have got APS or not. Get a diagnose from a Doctor who knows APS that is.
As I live in Sweden I know very little about how difficult it is at present for you with the Covid-19 and to see a Specialist.
Have they ever tested your 3 antibodies they should test to give you a diagnose of Antiphospholipidsyndrome? You shall take them twice at a lab and 12 weeks between the two tests. You can have one positive or all three positive to get a diagnose also with the typical symptoms we have like clots, DVT, PEs etc.
It is difficult to diagnose these autoimmun illnesses and especially APS with blood-tests and so many different neurological symptoms but very important to get the correct diagnose by a Specialist who knows what it means! Most of us have had a fight to first of all get to a Specialist and then to be correctly anticoagulated.
For your own good it is important to know if you have got APS.
Dr Grey I see his name is and he is a Hematologist. Do you know if he works with other people having APS as it is a rare illness indeed.
So he have tested you twice for all three antibodies then. Ask for a copy of the bloodtests taken twice as it can be handy to have later on indeed.
I say Good Luck to you and please let us hear how it goes for you. Ask about the INR if he thinks 2.0 - 3.0 of INR it enough to avoid further neurological symptoms like clots etc. Many APS-sufferers with APS need an INR between 3.5 - 5.0.
Also if you have got APS you should have something to take (a Fragmin-shot like I take perhaps) when your INR goes too low. That is very important for us on Warfarin.
I apologise for the length here but hope it will explain why my situation is complex/difficult and hard to diagnose effectively. I’ll answer your questions first.
The regular bruising could just be the Warfarin as I am frequently told !!!
The regular and excessive mouth bleeding (which I’ve had for nearly 3 years, could also be caused by Warfarin so I’m told!!
The gross bleeding in urine could also be caused by Warfarin, so I’m told!!!
After taking Warfarin for 24 years, why has the bleeding only become serious in last 3 years??? Nobody has even asked that question before!!!
I was told by Haematologist at first interview that I will always have to stay on Warfarin no matter what his tests reveal.
On 16th June he sent me for a lot of very unusual (and unknown to me), blood tests to see what was going on. I will receive a Telephone Consultation on 11th August to get his results.
He knows nothing about blood in urine or my referral to Urology to check for cancer!!!! That occurs this coming week.
For information I have Cirrhosis of the liver which was precipitated by NASH in 2003, Metabolic Syndrome, (which the Liver Consultant told me as I was walking out of his office, plus I would never be considered for transplant of the liver). He gave no explanation!!! I had to learn of this stuff myself.
I also have Diabetes (2002), Brain problems, Diverticulosis (2019), Breast Cancer (Mastectomy) in 2000. A number of serious and recurring chest problems, including- lots of Upper and Lower RTIs. Pneumonia (most recent was 6 months ago), Pleurisy and Pleural Effusion, Collapsed Lung, Pulmonary Embolism and a new diagnosis of Bronchiectasis. Heart issues include Tachycardia and Ventricular Ectopic beats, Irregular BP and bpm and a number of serious chest pain frights leading to hospitalisation.
My ears and eyes have severe problems. My mobility is restricted by Generalised Osteoarthritis plus a failed joint operation a few years ago. Gynae problems cannot be ignored either. Renal/Bladder problems occur on and off as well. My skin is currently a mess due to what they have called Hyde’s Disease (Prurigo)., regular skin spots, rashes, bruising and highly sensitive to be touched.
The symptoms applicable to most of the above are:
Pain (at mild, moderate and severe levels)
Pains can be sharp, long and continuous, and are very unpredictable in where they manifest
Consequently I have had short, sharp shocks of pain alongside persistent and nagging pains.
They nearly alway take me by surprise and cause me to yell unexpectedly. I have recently been prescribed low dose morn
SOB - comes and goes and relates to how much I try to do. Can be mild, moderate or severe
The MOST SIGNIFICANT problem that I have to deal with is my energy levels.
On a continuum from
Lots of energy
Mild energy loss
Tired
Fatigued
Exhausted
Unable to do anything
I can go from first to last in one day or be unable to do anything for hours/days on end. I have NEVER had lots of energy for approximately 10 years.
In the home I use a walking frame, stick, stairlift, and spend most days sitting/lying in a sedentary position. Writing is all I have to do or, be capable of doing. That is now becoming seriously impacted by Hepatic Encephalopathy/Exhaustion/Confusion/sleeping in odd places and at odd times. I’ve fallen asleep whilst on the phone, and I have now, what the GP calls ‘impaired cognition’. I have very little quality of life!!!!!! I try to be positive but it is very hard !!!!! If all this makes sense, please feel free to pass on any thoughts or ideas you may have because I’m afraid nobody seems able or willing to ‘join up the dots’ for me!
It will take specialists in both hematology and rheumatology to help you join these dots. They in turn will hopefully be the ones to coordinate with the GP, who will integrate the specialized knowledge, and plan(s) moving forward to help you reclaim your best and highest “you.”
I have to wonder... could a low blood flow (microangiopathy) to the liver possibly be at play? These things don’t always show you know. An astute doctor can have a ,Fingerspitzengefühl“... my favorite German word... loosely translated to a sixth sense. Literally translated to “a feeling on the tips of the fingers”... to be able to sense it in the air...
Many of us have struggled with being not listed to- with being passed over - or worse.
I think women who are 55or 60+ have it in some ways even harder- with APS as testing wasn’t as prevalent. It wasn’t as on the top of the mind awareness for doctors.
I’ve been through these wars myself, and watched my mother clot and suffer repeatedly with no diagnosis.
It’s not as rare an experience as you might think.
I would say ( easier said than done I know) let’s get to specialists- one step at a time - with your current therapist guiding your mental health every step along the way- and see if together ( just a long suffering patients some of us!) you can get to a better place.
I believe you need a specialist hematologist of APS. ( will have a handle on neuro aspects of brain and other organs if they are affects by sludging or clotting.) They should be in close contact with your GP who will understand your internal organs fully.
You will need a specialist rheumatologist in APS as well.
I’ll leave it to my English colleagues to advise you here.
I’m sorry I do not know about specific liver diseases.
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