What shall i do now?

[pinkyandperky]

Hi I had Telephone consult from St Thomas' today. they feel I do not have APS as the the test results they took have come back negative. they said my clinical history was just a coincidence and that my previous positive anticardiolipin results were not positive enough to be considered. I have now been discharged. I don't know what to feel. I have had multiple miscarriages a baby born at 29 weeks a dvt whilst pregnant plus lots of low grade symptoms like headache muddled speech and fatigue.

[Lure2]

I had read just a little and I understand you h ave seen prof Hunt and that you also have been on Warfarin for some time and tested both positive and negative to the 3 antibodies. You did have miscarriages but now I understand you may have neurolgical symptoms like fatique and difficult to find words etc etc

We can go from positive to negative and viceversa. But you must have had Warfarin for a special reason. Was APS that reason and why did you stop Warfarin?

Now you have no anticoagulation at all and have pins and needles that are typical for this illness APS. Have you talked to prof Hunt about this?

I think you should see a Specialist again as I think you need anticoagulation again. Hope I did understand the main events correctly.

[pinkyandperky in reply to Lure2]

Hello, thank you for the reply x I tested weakly positive to 1 of the 3 antibodies on 2 separate tests and then back to negative. I had warfarin therapy for 6 months 7 years ago after my daughter was born I was on clexane during the pregnancy as i had a dvt in my groin and left thigh. xx

[KellyInTexas Administrator in reply to pinkyandperky]

Did you see a jr dr?

Also, my numbers were not that high. ( aCL and b2GP1

Mid teens, low 20’s... then negative once- next time mid teens...

Now they are always positive and at 30. Which is not all that high, really, but for me, it is.

I’m also positive for the phosphotidylserine antibodies- I think 2 of them. My APS specialist said they are equally thrombotic. You don’t test in England. Only some doctors test here. It’s random which ones do and don’t.

I am occasionally positive for LA. Off and on- it comes and goes. So that’s 5 at any given time. Maybe. Or combination . Maybe 3. You could be positive for others you don’t even know you have.

It can fluctuate.

I’m also learning about “ high affinity” of antibodies. Some of them seem to be very good at doing their job, so there doesn’t need to be a lot of them to wreak havoc. ( that’s my terribly oversimplified lay person understanding.)

All I know is I kept clotting with one new DVT after another verified by scans. I’m now on rituximab.

[lupus-support1 Administrator]

IMHO, I would demand to see Pro Hunt.

I as very sorry as this must be very upsetting. You are given no information as to who made this decision without any discussion & therefore demand to see Pro Hunt. If necessary, get your GP to lodge a complaint as well as s/he can write to Pro Hunt.

With good wishes,

Ros

[MaryF Administrator]

Hi, you definitely need to keep an eye on your symptoms, I would be seeking to find out exactly who made that decision, and copy Prof Hunt into it and ask to be seen by her. In the mean time should you become unwell you must ring your GP for help. I would also be thinking of contacting PALS's. Is your GP supportive of your situation? MaryF

[KellyInTexas Administrator in reply to MaryF]

Yes!

[silemoran]

Go back and see Dr Hunt.

[MLNC]

I feel for you. I also have lost a lot of faith in Guy's & St Thomas's myself. Recently, during a telephone consultation my Dr indicated she believed my medication should be stopped and told me my symptoms were due to fibromyalgia, even though I have never had pain, just fatigue. Interestingly, there is no treatment for fibromyalgia and it has never been offered as a diagnosis in the almost 8 years I have been attending the clinic. I believe there has been a conscious decision to withdraw treatment and reduce the list at Guys & St Thomas's. I am triple positive, have lost babies and have shown a marked and quantifiable improvement in cognitive funciton when on medication. Many years ago Professor Hunt patted me on the head and said I was one of the lucky ones and sent me on my way with no medication, after we stopped trying for babies. But, I never felt lucky and certainly my life improved dramatically when I paid to go to London Bridge Hospital and then was placed back on the list at Guys and I feel medicated appropriately. I am terrified about what lies ahead.

[veganworld]

I have been on warfarin for twenty years after seeing Prof Hughes, miscarriage DVT foggy brain etc and recently after twenty years of feeling good had some extra problems so asked to be referred back to Guys to see if they thought it was APS related. I can not tell you what a difference I found since the first time around. The doctor I saw did not support or respect Prof Hughes work and told me I needed to come off the Warfarin. He referred me to the haematologist there to withdraw it but I cancelled the appointment as I want to stay on it. I literally cannot function without it. I don't know what is going on there but it is in my opinion very risky to undermine Prof Hughes in this way. I have always known there are risks being on warfarin and accepted it but there are equally risks not being on it plus quality of life. It is horrible feeling foggy, achy and unwell everyday. I did not see Prof Hunt and I assume from the other replies she may be more supportive of Prof Hughes. I think you need to fight on wit this and try to see her. Guys and St Thomas's have a very good complaints procedure and all the info for how to use that is online on their website.

Kaz x

[jessie68]

Oh bless you they have done the same to me and many others, its disgusting. They actually lied about my last results said they were negative. My gp chased up the labs and they were moderate to high positive. I have been left with tia damage and small vessel disease, start of dementia in my 40s.please fight your case as i am doing. X

[pinkyandperky]

Update! I had telephone consult with my local specialist today. I feel so much happier. he feels that my APS is only triggered with pregnancy which is why the results are weakly positive and sometimes negative. We are going to get on top of my ongoing iron deficiency and keep a close eye on my APS symptoms. he said because i have something called low von willebrand factor I am protected to some extent from clotting. It also means that anticoagulation should be avoided. He also agreed that I do not have low mood or dysthymia as suggested by Guys hospital.

[HollyHeski Administrator in reply to pinkyandperky]

Great, what a difference talking to a specialist makes, I'm pleased for you to get more information.

[RoseFlowerDew]

I also don’t have a lot of faith in Guy’s and St Thomas’s. In fact I have had very bad experiences with the hospital and unfortunately can’t agree that the complaints system is good. So although I didn’t guess I’m not surprised to see the comments about shortening lists and withdrawing treatment. Fibromyalgia seems to be a convenient handy catch all diagnosis..... I wish they didn’t hand out that diagnosis when it’s inaccurate as it doesn’t help in the long run.