Help! Gyno said i should have 3 miscarriages to have aps!

Just posted yesterday a question about getting heparine/ clexane. I was just phoned by the hospital saying they didnt want to treat me as APS since i had a healthy child and after that 2 miscarriages so that wouldn't suffice, since the official diagnosis to receive the diagnosis is to have 3 miscarriages. Having a healthy child would indicate that the other miscarriages were probably caused by my age, 38, even though i have (only one) negative antibody, IGM. Since i slready started aspirin they wouldn't take me off that, but they wouldn ' t suscribe heparine and i would be treated as a normal pregnancy.

Is it reaaly the case one should have 3 miscarriages? Are there any formal documents or research that give diagnosis with 2 miscarriages? She is open for research but they want to follow the official guidelines. She will phone me tommorow again.

If i don't follow their advice, I can go back to the hospital who gave me the diagnosis of APS, but I wanted to go to this academic hospital, since they have a higher standard of healthcare.

Pfff, how complicated! Its stupid to wait for a 3d! Miscarriage only to be confirmed with aps

Any help?

Marije

Ps i have severe migraines, and also rsi kind of complaints in arms that might be linked with aps... But thats something they don't really take into account

17 Replies

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  • I think you need to contact the Hospital that diagnosed your APS and explain what is happening and ask them if they can intervene on your behalf. If they contact the academic hospital confirming your APS with perhaps the tests they did (aPL, LA, AntiB2 Glycoprotein1) and the results you may have more luck with convincing them. Dont give up!! Im sorry this is happening but try and stay strong. xx

  • Hu apsnotfab, I showed them the results of the blood tests, 2 times in between a period of 12 weeks like it should. But they say that yhe clinical criteria to have aps is 3 miscarriages and two pos blood test and not just 2 miscarriages and 2 blood tests I'll talk with mu GP, totally confused what to do now

  • Thats unfortunate. These Doctors that insist on sticking to the diagnostic criteria stringently are very frustrating because the criteria also says that clinical history should also be taken into consideration. I expect they are under an obligation to follow it for legal reasons.

    The only thing you can do is find an APS specialist Doctor. I dont know if contacting London Bridge Hospital in London and asking them if they know anyone in your local area who they could suggest you see. They may be more willing to use the recommendations of a specialist.

    As I said above if you contacted the DOCTOR who you were under where you got your diagnosis could you get him/her to speak to that Hospital on your behalf?

  • I have never has a miscarriage and have two healthy kids. I was diagnosed with primary aps. I'm sorry and good luck.

  • I'm sorry you are going through this too :( it's so frustrating. I feel like there's nothing I can do at this point. I have a history that suggests APS, seizures as a kid, headaches as a teen, PE in my early 20's (1 week after surgery so t was 'provoked') multiple problems with pregnancy including SCH, swelling etc. I have had 2 positive blood work tests for APS but I've had only one consecutive MC. I am almost 8 weeks pregnant again and my GP still doesn't want to put me on heparin. When I was pregnant with my daughter I was put on heparin as a precaution & had a successful pregnancy. So....now that I know I have APS were not going to treat it? They want me to have two more miscarriages I guess. It just baffles my mind. I'm not giving up here though. I'm going to a new OBGYN & trying to see an old rheumatologist.

    Good luck momma, don't give up. Keep trying.

  • Gobsmacked! I had two clots, diagnosis, but no miscarriages and treated for APS during my third pregnancy and know i was very, very lucky. Please, please seek help from your diagnosing professional.

  • I also had this as the guidelines also imply you have to have one unsuccessful pregnancy that ends in the second tri on aspirin before heparin can be prescribed.

    I got a private appointment with Mr Rai at St Mary's and got him to write a referral to my gyane and she has prescribed it. She was actually very nice about it and said she welcomes input from other consultants more specialized in the field and would be reviewing her own interpretation of the guidelines inline with the info I gave her.

    As everyone else said. Call the doctor who diagnosed your APS and see if he can prescribe it. As you have had one successful pregnancy using heparin I do not understand why they would change the winning combination.

    Wishing you all the very best of luck xx

  • Hi starships, maybe i didnt explain well enough, but my first pregnancy was without any problems, so I didn' t use any meds. They only diagnosed my with aps last month, after two miscarriages. Because I had a normal pregnancy, they find it unlikely I have APS eventhough antibodies where found twice last half year... They might be right, but I have rather too much medication then too little

  • I find this "you must have 3 miscarriages" rule baffling.

    I had one clotting event (DVT) in 1994 and was diagnosed with APS almost immediately.

    I didn't have an APS related miscarriage, but was still treated with heparin and aspirin throughout both my pregnancies (1997/8 and 1999/2000).

    Have the rules changed? Or is it a geographical thing?

  • I have had two normal pregnancies as well as three miscarriages so there is no rhyme or reason. The fact that a Doctor seems to be advocating that you actually have another miscarriage is baffling to me when they should be doing everything in their power to stop one! If it were me I would be asking these Doctors out right if they want to be responsible if you miscarry and see what they say then!

  • Baffled by all this.

    I have had one PE (after surgery) and two positive tests (with one negative in between) and despite the fact the PE could be said to be provoked by the surgery and the rogue negative blood test the specialist haematologist is very clear that I need to be on heparin (two jabs a day) should I get pregnant. Generally they were worried as I was young (well, 29!) at the time and dont have any lifestyle risk factors eg smoking, the pill...

    In addition to risk of MC, let's not forget the risk to the mother as pregnancy is a high risk time for blood clots and so getting heparin treatment if necessary is important all round.

  • thanks for all your replies! I spoke with my GP and see could totally see my distress having one hospital saying I have APS and the other denying that. She will contact the gynea as well and also try to speak to a specialist in a third hospital who is specialized in this... So I am really happy she is supporting me in trying to find out why they made this decision. And furter I spoke with the gynae from thursday who gave me this message yesterday, to make an appointment for monday to talk the whole issue through. I had a cry over the phone, which really helped I think. She completely changed her tone of voice saying that if I was really that anxious heparin could still be a possibility and that I shouldnt worry this weekend to much. So am a bit more relaxed now and hopefully their opininion might change...

  • At last common sense! I was giving up on the will to live!! Please try to relax over this week-end because the stress will not be doing you or the baby any good and let us know what happens on Monday. xx

  • Thank goodness .This sounds a lot more hopeful. It is awful that these attitudes are still around .good luck on Monday . Let us know how you get on. Professor Hughes argues that all pregnant women should be tested and treated to prevent miscarriage . There is no need to put women through that kind of distress. Thinking of you. Ann

  • Good luck. I think this attitude of the hospital is bonkers and by their reckoning I wouldn't have qualified for ANY help.

    I have one lovely daughter and had no idea that I had APS when I was pregnant although it was a weird pregnancy (I continued bleeding and didn't know I was pregnant until I was over 3 months). I consider myself extremely lucky as I have a clear APS pattern to my medical history. It has been suggested (although obviously impossible to confirm) that because with my successful pregnancy I continued bleeding and had no idea I was pregnant it is possible that actually when I had previously had particularly heavy, painful or stressful bleeding it may have been miscarriages. This counting miscarriages sounds like a very odd means of confirming a diagnosis.

    I really wish you all the best and hope that you get appropriate help and support

  • Hi, just un apdate...

    I just found a very recent academic article of jan 2013 exactly discussing this critera of having 2 or 3 miscarriages. Since most gynae want to work evidence based, this might just be the article to convince not to wait till you have 3 miscarriages. You can find the whole article here:

    fertstert.org/article/S...

    conclusion

    The number of preceding miscarriage, type and sequence of previous pregnancies, and maternal age were not associated with APS in women with RM. There is no increased diagnostic yield for APS after three miscarriages rather than after two miscarriages and no increased diagnostic yield for APS after consecutive miscarriages rather than after nonconsecutive miscarriages. Therefore, APS testing should be considered for all women with two or more miscarriages.

    My bad luck: I was talking to a doctor in residence, so not a qualified gyneacologist. She will again discuss my case coming thursday including the results of this article and will plead for heparine, but my gut feeling is that a residents doesn't have a very strong position to change the protocol of a hospital... Am considering to make an appointment with the local hospital who diagnosed me with the syndrom just in case... Really tired of it all!

  • just a quick update: the gynecologists finally decided they would give me heparine, am really relieved. I had an ultrasound with last friday 6 wks + 3 days and although I thought it was a bit too small, there was heart action. I started straight away with fragmin and hopefully this is on time. Next ultrasound in 3 weeks, still a bit worried...

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