Sticky Blood-Hughes Syndrome Support
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New APS should I be on blood thinners?

New APS should I be on blood thinners?

Hi,

I was diagnosed several months ago by my fertility doc with APS- non lupus. I followed up with a rheumatologist who told me just take 81 mg aspirin. I questioned him about using additional blood thinners and he said I’m not symptomatic (PE, DVT, Stroke) but I’ve had 4 miscarriages!!! Isn’t that symptomatic??? Should I be on another blood thinner as well?

12 Replies
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Hi and welcome. I think what he means by symptomatic is that you are not having other symptoms other than your miscarriages, I e. migraines, balance problems, cognitive issues, levido, aches and pains, fatigue and other neurologic manifestations that can plague people with this condition. Of course you must address the miscarriages but aspirin until you are pregnant and then add in LMWH is often what is prescribed.

If you are having other symptoms then of course that may well be another matter that should be considered. Try not to stress as that won't help get you pregnant again and i think thats your primary concern at the moment isn't it?

Please make sure your thyroid, Vit D, Ferritin and B12 are all at the right levels too.

Good Luck hope to hear some good news soon.

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Hi thank you for your reply. I am not concerned about getting pregnant at this time. I am concerned I will have a blood clot. I get bruises all over, fatigue, low platelets, brain fog, migraines, memory problems and for some reason I stiffen up and can not walk when I sit or lay for long periods. The rheumatologist wasn’t concerned. I’m seeing other people on this site also have similar symptoms. I’ve had low V D and b12 in previous blood tests but no follow up on those for years.

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Hi and welcome, do take a look at our charity website: ghic.world/ This carries a list of useful specialists across the world, also we do have some on here under pinned posts over on the right hand side of the forum, these are UK ones. Where are you located? To be clear it is important as well as regular blood tests you may be doing for Hughes Syndrome/APS, it is also advisable to test Ferritin, Folate, your Thyroid, and also vitamin D and B12, to get the complete picture.

I was treated during each of my pregnancies and for a few weeks afterwards as I clotted badly, however I now am just on Aspirin plus a few other drugs, but not a specific anticoagulant. However keep an eye on your symptoms and do alert your GP if you have any changes.

MaryF

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Hi thank you for your response Mary. In previous blood work I had low b 12 and v D. I haven’t had follow up in years. I’m located in Phoenix, Arizona. Hoping your site will have a blood doctor that knows what to look for to help me. Thank you!

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Possibly heparin injections once u are pregnant. I was on just aspirin then just stayed on that with 1st pregnancy and with 2nd aspirin and daily heparin injections from about 6 wks preg x

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If your non APS specific symptoms continue you might try to explore undiagnosed food sensitivity issues and gut biome health. Evidence continues to accumulate that gut biome imbalance is related to autoimmunity. In my case, I once had sky high IgG, IgM and IgA numbers as well as strong positive for Antiphospholipid antibodies. All those numbers fell to normal after I went on a gluten free diet. Plus I went from 2 naps a day and 12 hours sleep at night back to hiking, swimming or mountain biking each day.

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Hi Gina,

Do you know if you were Gluten-intolerant before you started your Gluten free diet? Had you done some Gluten-tests?

Kerstin

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I had no idea I was gluten sensitive. A friend of mine was nagging me to try a no carb diet. To my surprise my GP agreed I should try it. Turns out, her physician uncle had been a friend of my Father, who tried to convince my Mother that I had Celiac. Mother thought Creliac was A made up disease and this disagreement was one of many factors in TheDivorce. After my health improved so dramatically I myself concluded I had Celiac, 6 weeks had past by the time I tiook the test, the results of which were negative. But based on other blood work everyone agrees I have gluten sensitivity if not full blown Celiac..

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I guess you have already read the blog for May by prof Hughes, put on our site by Mary.

The patient of the month describes her Celiac-issues. I came to think of you.

Kerstin

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Actually, no. I’m in the hospital after knee replacement and I just could not find a link. I’ll read it when I’m home.

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I hope you are recovering well from the knee op Gina.

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Get to a hematologist who has knowledge of APS and also get checked for other clotting disorders. I have both APS and Factor V and I'm on warfarin.

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