New and confused?!

Hi all.

Hope you are all well.

I have a long and painful medical history which I will put in below but not in too much detail. Feel free to ask questions - I am not shy about sharing! I apologise in advance for the long and rambling post.

2009 - had a partial hysterectomy, left ovaries took everything else. Long history of heavy painful periods. It went horribly wrong, my bladder and womb were adhered to the inside of my stomach so when the surgeon cut he went right through the lot! Basically had my bladder re-built! A few weeks later I went to my gp, saw a locum, and complained of breathlessness and chest pain. Don't remember what my sats were but I was dismissed as being unfit and sent home.

2010 - had meds for a trapped nerve in my back and started bleeding a lot from my back passage. Long story short eventually got diagnosed with Ulcerative Colitis. Was med resistant and ended up having my colon removed early 2012.

A few weeks later I woke up with breathlessness and chest pain. Long story short went to hospital had a scan and was found to have a huge pulmonary embolism. Right lung was 50% full and the left was 70%. It was a tough few weeks as I wasn't allowed to even get out of bed and pee on my own!

Was on warfarin for 6 months and all was hunky dory.

I then had a spontaneous p.e Christmas day 2012. Back on warfarin.

Then followed a series of p.e's on warfarin, heparin and even on both! Then the dvts started.

To date I have had 8 p.e's and 4 dvts. I now have an umbrella filter in my aorta which catches the clots. This was put in Feb 2014 after p.e number 8. Am on rivaroxaban 15mg twice a day.

Not had another p.e to date but the last p.e I had is not dissipating as fast as it should.

I still get dvts but nothing stops them.

Went to my gp today because I have been feeling exhausted regardless of how much I sleep, dizzy, headache that won't go, dizzy head, keep forgetting things, muscle cramps among other things.

He mentioned Hughes Syndrome and said he wanted me to get tested for the antibodies for it.

He also thinks I might have do the lupus and/or m.e/chronic fatigue syndrome.

I am at a loss as to what to think because I have been under a haematologist since mid 2013 and not once has he even said this. He seems very reluctant to test me for anything to give me a diagnosis and it is a bone of contention between us to be honest.

He says that it won't change my treatment but I would like to know! We have agreed to disagree on this.

Is there anything I can do to ease my symptoms? My gp gave me so co-dydramol to see if that helps with the pain.

Many thanks for reading this. I am so sorry it went on for so long! Once I get started I can't stop!

xxx

[MaryF Administrator]

HI, you tell quite a familiar story, many on here have had a long path to diagnosis with Hughes Syndrome/APS and or Lupus and a host of other overlapping conditions. Your GP sounds on the ball, please tell him that often these three tests are done: hughes-syndrome.org/about-h... Please make sure you do them at the hospital or very early in the morning with GP, to make sure that the samples taken do not hang around too long for collection as they are time sensitive.

Your GP may also be interested in our charity website: hughes-syndrome.org/

It is not unusual to have Lupus with Hughes Syndrome, however the main trio of diseases are Hughes Syndrome/APS Sjogrens Disease and Thyroid problems, the last two often get dismissed as Fibro on Chronic Fatigue. Also your GP if in testing mode, needs to look at your levels of B12, Iron (Ferritin) and D, all these need to be optium. Please let us know how it all goes, and use this forum as much as you feel you would like to, and welcome by the way. MaryF

[Hidden in reply to MaryF]

Hi MaryF and thank you for replying.

I am having bloods done tomorrow morning at 9am then going for the results on 3rd July all booked in and ready!

Not sure what he is exactly testing for tomorrow but it will be a nurse I see and not him.

I think he said about checking my fbc and my brain has now gone to mush!!!

Grrrrr it gets so frustrating!

Anyway I will let you know what they are tomorrow.

The fatigue and all that has been going on for about 2 years now and this was basically my last attempt of getting anywhere with it as, I expect you know, it is blooming exhausting to keep going over the same thing time and again only to be dismissed as a virus or its in your head.

I has been tested for lupus before but when they did the test I was feeling quite well - a rare occurrence - and so tested negative.

Inflammation markers that was something else he said about testing as my joints are soooo sore!

The gp I saw today is not my normal one however he was very open to suggestions and isn't afraid to look something up then and there if he is unsure.

Xxx

[MaryF Administrator in reply to Hidden]

Sjogrens is very very typical with this disease as is a thyroid problem, hughes-syndrome.org/about-h...

You and your GP are clearly on the right path. MaryF

[Hidden]

Hi APsnotFab.

Thank you for replying.

I am in Plymouth and am under Tim Nokes at Derriford.

Apart from the whole just treating the symptoms and not the cause thing he is a really good haematologist. He is patient and will explain things clearly. I just learnt recently that he and my gynae have been having an argument via letter about the exact same thing! She thinks he should be doing more to find the cause and not just treating the symptoms. I saw a copy of the letters they have been writing to each other and they get pretty snotty - for want of a better phrase!

I don't think he will ever change his mind so maybe I can talk another consultant of mine into doing it?!

I have a gynae, a gastro and a haematologist. The gastro is as much use as a chocolate fire guard! Only had 1 follow up appointment since my opinion 3 1/2 years ago hey have been studiously avoiding me even though I do about and make a fuss!

I cannot travel very far and so am limited to where else I can go. Have costed private and it would be very expensive.

I will give this gp a chance and then review!

xxx

[MaryF Administrator in reply to Hidden]

Hi here is our list of recommended specialists: hughes-syndrome.org/self-he...

MaryF

[Hidden in reply to MaryF]

Thanks MaryF.

I am under 2 of the 3 at Derriford and the other one is under the main one I see as he is the head of haematology!

Xxx

[CormorantWatcher]

Some of your history sounds like mine (UC, collectomy, DVTs, PEs, tiredness).

Fact: UC increases likelihood of clotting. Nobody told me this until AFTER I had my first DVT.

I then had a series of DVTs and PEs (3 and 1 respectively), before I had the collectomy. As I had the collectomy and hence "cured" UC, the haematology dept I was under figured I was at no risk of clotting, so could stop warfarin at end of 6 month stint. THE NEXT DAY I GOT A PE. BI-Lateral, so much more fun than the first one (which felt like a broken rib, shortness of breath).

They were puzzled, ran the tests and then declared I had acquired/developed or perhaps always had APS.

In my case, I now have to be on warfarin for life, having had several clotting incidences and diagnosed with APS. the tiredness tha remains for me is in part due to anaemia - this was always an "occupational hazard" with UC, as blood loss came with the territory, but once "cured" there was on obvious answer. My doctor was not happy with just treating the anaemia with iron supplements or as recently, iron infusions - MUST get to the cause of the loss of iron.

So that's where I'm at - under investigation, know I'm anaemic and not improving. Get your doctors to investigate the CAUSE of tiredness etc, not just try to treat the symptoms. That's a waste of resources and doesn't fix the issue. It may take a while to diagnose though - I'm four years into this round of checks, investigations etc, but feel close to finding out.

Good luck

[Hidden in reply to CormorantWatcher]

Thank you for replying.

I didn't get my first p.e until after my op for my colitis. I wasn't told of the increased risk of clotting either but that doesn't surprise me. They seem to tell is the basic minimum they can about anything!

I have been trying for the last 2 1/2 years to get my haematologist to test me to see why I am so blooming tired not to mention all the other things as well.

He seems very reluctant to do any testing of any sort. My gp, depending on who I get in to see, varies in response. Mostly its still due my rectal stump so its my UC acting up. I am always anemic but have iron infusions every now and then. Have had uti so its that.

There always seems to be an easy way out for them to pin point it to something else.

To be honest I have been feeling like this for nearly 6 years and I am loosing the will to fight any more. It takes far more energy to go see another doctor to be told its nothing, every few weeks, than to deal with it myself, which I have been doing.

I will see what the test results are when I go on the 3rd July. Not getting my hopes up as all my other ones have been normal even when I have felt worse than I did on Friday.

Xxx

[CormorantWatcher]

To be fair to the doctors, your GP is usually just that - a general practitioner. You need a specialist.

I was beginning to feel no one was bothered, after three years of trying to be referred etc. it has only been the last year that stuff has progressed.

I feel lucky that the consultant specialist I am now under was not happy that there was an underlying issue and I have been through a few rounds of stuff in the last year - latest test was two weeks ago, so waiting results.

It's hard, because I sometimes begin to feel like a hypochondriac!

[Hidden in reply to CormorantWatcher]

I get where you are coming from but if the gp doesn't think there is anything wrong with you no referral will follow.

Plus the rheumatology department here seems to want you to have certain bloods as positive before you even get a referral. Have had it happen to me before. My gp asked for a referral they asked for bloods to be done my bloods came back as normal I was refused an appointment.

I understand why they do this but not everything follows the rules medically. On one of my p.es my sats were ok and my pulse was not too bad, my bp was perfect but when I demanded they send me for a scan I had a clot the size of a grapefruit in my left lung!

My dvts show no outward sign of existing either but they do.

I think I am just really really weird!!!

[Lure2 in reply to Hidden]

Hi,

I wonder what the GP (was it the GP) said when he found that you had a clot the size of a grapefruit in your left lung? What did they do?

Hope you do not mind me asking these questions. We learn so much from eachother. You have had negative bloodtests and no Diagnose yet. Is that correct?

How do you know there are DVTs?

Kerstin in Stockholm

[Hidden in reply to Lure2]

Thank you for replying.

Of course I don't mind! Ask anything if I can I will answer it!

My gp, it was a locum, sent me to the hospital for a scan to see what was going on. I think it was my 4th p.e so I knew the signs better than he did! They scanned and found the clot then panicked because I was already on warfarin at the time and also was being quite active! They kept me on warfarin, even though I said I wasn't happy on it as I didn't think it was working for me, and gave me heparin injections as well! Hated having to do those!!!

Funny enough it was this one that then made them get me in to see a haematologist as they had refused up until then! They were very surprised when the results came back and they saw the the size of the clot. I just shrugged my shoulders and said I told you I had a clot! I am on really good terms with them up at the ambulatory care unit now!

My dvts are another blooming nightmare! My first one is the only one that has ever shown outward signs of existing. My lower leg by my ankle had a slight swelling, nothing much but I noticed it as I was putting moisturiser on in the morning. The gp I saw that morning didn't even ask me if I wanted to go to the clinic I was on my way there before I knew what was going on!

They scanned me and yep there it was! Not huge but big enough. The subsequent ones have now visible signs but the pain is there and you can feel them when you press onto my legs. I don't even go to the gp any more! I make a note of when they appear, if I can feel it, how big, how sore, if my whole leg is affected, what I had been doing a few days before. I then email my haematologist and if he is concerned he calls me in! a much better system for me as I get them every few months regardless of what I am doing.

The results I am awaiting now will be the 6th lot this year, so far, not sure of what they test for! I stopped asking a long time ago. I think I averaged every 6-8 weeks last year and the year before. My crp is normally up, but they put that down to my UC. I am always anemic - again UC. Can't remember any others! My brain is just blergh!!

If you think of anything else ask away!

xxx

[CormorantWatcher]

Re-reading your first post - I have been told riveroxaban is not yet licenced for APS. If they haven't checked for APS, that would seem to be sensible. They never did the lupus screens on me, as I was on warfarin. I developed my DVTs and PEs while on warfarin and/or heparin, usually following hospital admissions (and hence periods of inactivity).

Good luck and hope you get some resolution soon.

[Hidden in reply to CormorantWatcher]

Yeah rivaroxaban isn't licensed for what they are giving me for but it is my last hope. Warfarin and heparin, either separate or together, didn't work. I didn't stop having p.es until the put my umbrella filter in last Feb(2014) and that was when the switched me to it.

They have already told me if I have another p.e with the filter they honestly don't know what to do! Since my first p.e I have always stayed as active as I can. I have bought a treadmill and walk for a minimum of 10 minutes once a day. If I feel up to it it's twice a at, but its not very often! I also go for walks with the family to national trust places as their are a few nice ones around where I live.

The last big dvt had was Feb this year after my ovarian cyst had burst and my other ovary decided to join in the fun by having a bleed as well! Was bed bound for 2 days! I could literally feel the blood clot forming in my left leg as I laid there in agony!

This will be the first test for Hughes Syndrome/APS that I have had. Assuming he has requested the right tests! I forgot to ask on Friday - as usual!

With the lupus test, it was given to me while I felt relatively ok. Reading on the lupus UK forum on here I know they say it can be difficult to detect if you are not in a flare when tested. Don't know if that means anything or not but I don't worry too much about it! If I ever get in to see a rheumatology consultant I will ask them!

Xxx

[Lure2]

Thank you for your well written answer!

So now when you are switched over to Rivaroxaban after Warfarin you are going to be tested for APS!

I do hope you will get the help you have needed so long very soon and finally talk to a Doctor who really understands what you have going through.

Please, stay on this site and let us all hear how it goes for you. I wish you LUCK!

Kerstin in Stockholm