New diagnostic criteria?


I wonder if anyone can help please?  I was diagnosed with APS, approx 9 years back, on signs and symptoms, medical history and blood results, though my bloods were low positive only. 

Would that mean, with the new diagnostic criteria, I no longer have aps?  

I'm one of the many who have been discharged from tommies as 'stable', and have seen a new doc who is now calling my illness fibromyalgia. (Flashback to 15 years!! 😡😡😡) 

I have to obtain bloods from tommies to send to new consultant, to give him evidence of aps, as gp hasn't any, and I'm now concerned, they will look at my bloods and completely stop my blood thinners!!! 

Wish I'd never got a new rheumy. It's a minefield again. 

Thanks for any advise, I don't know what to do about this mess,

Many thanks 


12 Replies

  • The disease does not go away, Fibro is not a true diagnosis for you, we as admins are taking it very seriously that people are being re diagnosed with the condition apparently going away, however any doctor's names by private message only.  We encourage a culture of good practice on here!    MaryF

  • What new diagnostic criteria would that be? It seems every time they have a conference it changes!!

    Do you have the paperwork that shows you had a dx? If not write to Tommies and ask for it. I think Im right in saying that the "discharge " letters usually say that if your condition changes you can go back. If thats the case, do so!

    If no luck there, ask on what medical evidence you now are supposed to have Fibromyalgia! 

    Concerned that your GP would not have had/kept records for you for as little as 9 years ago. In the mean time do not do anything until this is sorted. You may have to opt to go private to sort this unfortunately, as many of us are forced to do.

  • I agree with  Mary and APsnotFab what they have told you!

    I live in Sweden and this is a problem throughout the whole world. We must have an Expert who understands  that we have too thick blood and that we never must stop antigoagulation. Never ever. 

    At the same time I wonder if you have read "Sticky Blood Explained" written by Kay Thackray. She has APS herself and writes about all the different symptoms and how it is to live with this rare illness. It is written a couple of years ago and do not have the latest oral drugs (which are not all of them even allowed for APS)  but the symptoms are the same as always.

    Best wishes from Kerstin in Stockholm

  • Hi 

    Imean this? 

    The diagnosis of APS requires at least 1 of the following clinical criteria and 1 of the following laboratory criteria. Laboratory criteria must be positive on 2 or more occasions, at least 12 weeks apart.

    Clinical criteria

    Vascular thrombosis: 1 or more clinical episodes of arterial, venous, or small-vessel thrombosis in any tissue or organ. Thrombosis must be confirmed by objective validated criteria. For histopathological confirmation, thrombosis should be present without significant evidence of inflammation in the vessel wall. This can be further subclassified as being in the presence or the absence of additional risk factors for thrombosis.

    Pregnancy morbidity: 1 or more unexplained deaths of morphologically normal fetuses at or beyond the 10th week of gestation, with normal fetal morphology documented by ultrasound or by direct examination of the fetus; 1 or more premature births of morphologically normal neonates before the 34th week of gestation because of eclampsia or severe pre-eclampsia defined according to standard definitions or recognised features of placental insufficiency; 3 or more unexplained consecutive spontaneous abortions before the 10th week of gestation, with maternal anatomical or hormonal abnormalities and paternal and maternal chromosomal causes excluded.

    Laboratory criteria

    Lupus anticoagulant is present in the plasma on 2 or more occasions, at least 12 weeks apart.

    Anticardiolipin antibody of IgG or IgM isotype in serum or plasma is present in medium or high titre (>40 IgG phospholipid [GPL] units or IgM phospholipid [MPL] units, or >99th percentile) on 2 or more occasions, at least 12 weeks apart, by ELISA.

    Anti-beta2-glycoprotein I antibody of IgG and/or IgM isotype in serum or plasma (in titre >90th percentile) on 2 or more occasions, at least 12 weeks apart, measured by ELISA.

    It must be emphasised that about one third of patients with APS have a lupus anticoagulant, anticardiolipin, and anti-beta2-glycoprotein I antibodies. Many patients may be positive for only a lupus anticoagulant or anticardiolipin antibody alone. Thus, it is important to offer all the assays in a patient's work-up.

    Manifestations that are not part of the criteria include thrombocytopenia, heart valve abnormalities, livedo reticularis, seizures, chorea, and nephropathy. [32]

    I believe my blood levels have always showed up as lower than this, therefore Tommies may no longer consider me to even have it now. And i don't want to stir up the hornets nest any more than I seem to have! 

    My miscarriages weren't consecutive 

    It was 2 and then a pregnancy then the third then a pregnancy

    Thank you for your help. I really appreciate it. 

    Hope everyone's wellx

  • Sorry. Yes I do have a letter saying I have antiphospholioid syndrome from one of the top docs at tommies, but no blood results. 

    I see my gp next week so will mention it to him, I will see if he has records of it all. 

    Thank you again 

  • Hi

    It seems to be different docs have different ideas.  I am under guys, and I test very high positives for B2GP1, anticardiolipin and LA.  I have also had 2 miscarriages and I have other symptoms to which could also be attributed to my Lupus.  But they refuse to confirm APS and only have me as Probable APS and taking aspirin along with my hydroxychloroquine.   Although they want me to be be bridged for surgeries and heparin on long haul flights.  To be honest when I'm not in a lupus flare I still have the symptoms that could be both lupus or APS related, so who knows if I need more than aspirin.

    I was told if I have another miscarriage or a clot they they would confirm it. wgich I feel is harsh.  

    But k don't think they can say you no longer have it.  I hope you can talk to your GP and get some Support and guidence from them.

    All the best 😀 X

  • Thanks 🙂 I also feel that is harsh for you! Particularly a you have high positives! 

    I hope you can get something confirmed without that! 

    Thanks for helping, really appreciate it 


  • Just a can have APS without ever having blood clots, miscarriages etc

  • Not according to the consultant I saw at Guys - not that I agree but highlights the inconsistency of diagnosis even within the same team. 

  • Yes it does show, if even within the same team there's confusion, there is little hope around the country! 

    Thank you 


  • I was just about the say the exact thing as nicbay😞

  • Ah thank you! Appreciate that! 

You may also like...