APS and IVF treatment?: Hi, I've been... - Hughes Syndrome -...

Hughes Syndrome - APS Support
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APS and IVF treatment?

atiajanssens
atiajanssens

Hi,

I've been through 2 rounds of IVF, 2 early miscarriages and 2 unsuccessful attempts - my sister has APS (Antiphospholipid syndrome) and I asked my doctor to check for it the first time i had a miscarriage: she didn't, she said "this is normal". so now i've had the second early miscarriage about a month ago and will ask her again to make a blood test. is it more likely that I have APS if my sister has it?

I also have Alopecia Areata and I heard if you have one autoimune disease, it might be more likely to get more...

Am I making myself unnecessarily crazy...?

Greeting Atia J.

Edit 13.9.: Today I had the appointment and the doctor agreed to test for APS and other issues regarding recurring miscarriages, I am so very relieved! I live in the Netherlands and I moved here about 2 1/2 years ago, so I don't know much about the medical system, my husband is Dutch so he helps me with it. Thanks for the nice reply's and advice, I appreciate it. The test will be in November because apparently the body needs several months to get back to normal even after an early miscarriage

13 Replies
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HollyHeski
HollyHeskiAdministrator

Hi I am sorry for your losses.

Welcome to our friendly supporting site.

With your miscarriages, family history and already having a autoimmune disease may mean you are correct to suspect Hughes/APS, so its understandable you are worried.

The important thing here is to let your mind and body heal. In the meantime, yes get yourself tested, which is blood tests, 12 weeks apart.

I'm not sure where you are and how easy it would be for you to see an APS specialist with obstetrics knowledge?

Have a look at our web site ghic.world for more informative information.

Others will answer and show support.

Today I had the appointment and the doctor agreed to test for APS and other issues regarding recurring miscarriages, I am so very relieved! I live in the Netherlands and I moved here about 2 1/2 years ago, so I don't know much about the medical system, my husband is Dutch so he helps me with it

HollyHeski
HollyHeskiAdministrator
in reply to atiajanssens

Thats good - I hope you get some answers soon.

Let us know how you get on?

MaryF
MaryFAdministrator

Hi and welcome, yes you should be tested and your doctor should be taking your wider family history into consideration when making medical decisions. So sorry to hear about your losses, this is the right forum for you. Where are you located, we have specialists listed on here: ghic.world/ and also if in the UK we have a lot listed on the right hand side of this forum under pinned posts, area by area. Also important to check your B12, D, Iron and Thyroid, to make sure all levels are good, it is not unusual to have a thyroid problem alongside this condition and other autoimmune conditions. MaryF

atiajanssens
atiajanssens
in reply to MaryF

Today I had the appointment and the doctor agreed to test for APS and other issues regarding recurring miscarriages, I am so very relieved! I live in the Netherlands and I moved here about 2 1/2 years ago, so I don't know much about the medical system, my husband is Dutch so he helps me with it

MaryF
MaryFAdministrator
in reply to atiajanssens

Sander Otter in the Netherlands can help you, and I enclose this: antifosfolipidensyndroom.nl/ MaryF

Hi Atia. I have had 5 early miscarriages to fibd out i have aps. Then i had clexane twice daily for the entire pregnancy. I suggest you should investigate more to aps. Stay well!

I am so sorry to hear that you had to suffer so much! The doctor agreed to test me for APS and other issues

So sorry to hear about your losses. I strongly suggest reading “is your body baby friendly” by alan beer, md. I wish I had read it when I first suspected issues. It discusses reproductive immunology - there are treatments that can help... but without that help us autoimmune sufferers will continue to struggle with successful pregnancies. In my opinion too many REs and OBs will tell you that miscarriage and IVF failure are just “bad luck”, but we know there’s more going on when there are autoimmune issues. Wishing you all the best on your journey!

Thanks so much for the reply, I will definitely look into that book. Yes I made the experience as well that doctors tell you "it's normal" and that's so frustrating.

But today I went to the appointment and she agreed to do all the tests for when you have recurring miscarriages, including APS. I am so relieved!

Good luck to you. I know things will turn out good for you. Hard to go through miscarriages but at least you are on the right track.

KellyInTexas
KellyInTexasAdministrator

Fantastic news! A very well respected scientist/ professor of APS is in the Netherlands -Amsterdam I’m sure. Professor DeGroot.

Hi

I feel your pain, i had repeated miscarriages and failed ivf, countless tests. Then my sister was diagnosed with hughes after a stroke. I was tested for this and found to have Leiden 5. So on my last round of ivf i injected claxane prior to embryo implant and the first trimester. I had my beautiful girl. It may have been luck...... But seems odd we took a different measure and it worked. Worth asking about! Good luck.

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