Protein S deficiency

Ginger71 · December 2009

Is anyone familiar with this? I haven't had a chance to speak to my RE about it yet. The best info. I can get by googling is that it is a clotting disorder-too much clotting and that it can cause recurrent m/c. Some info. has said it is automimmune but I can't figure out how that would be. Most of what I am reading is either very limited or too technical and I am starting to get frustrated.

If you were diagnosed with protein s deficiency or are familiar with it can you please enlighten me?

Thanks so much!

Ginger

happiness2004 · December 2009

Sorry I am not familiar with this deficiency. Maybe also post on SAIF to see if anyone can help. ? Good luck. I also find it very frustrating when I try to look up such techincal things and I can't find any details.

Ginger71 · December 2009

I'll try that-thanks!

itsmevkb · December 2009

What you said is basically correct, a protein S deficiency means that you will be at a greater risk of developing clots. You are also at a greater risk for miscarriage, low birth weight babies and not to totally freak you out, but also for late term loss.

Pregnancy naturally lowers your level of protein S so if you're already deficient it can cause bigger issues.

I was diagnosed with the deficiency after I developed a blood clot following the birth of my second child. I am fortunate enough to have had no miscarriages and to have two healthy children despite having this issue. With my current pregnancy I am on Lovenox to help thin my blood and I will be on it until three months post-partum.

I went and saw a MFM doctor after my diagnosis and she said the standard treatment is Lovenox/heparin and that just in general the advice to anyone with this clotting disorder would be to make sure you get up and walk around frequently, wear compression stockings during pregnancy and for long distance travel pregnant or not.

I hope this helps and I'm sure your doctor will be able to explain it more fully to you.

Ginger71 · December 2009

Thanks so much. It definitely helps! I was worried sick. I know it's rare and that's probably why there isn't much info? What I found just scared me even more. Especially when I read something about "silent killer" (I think that was referring to DVT-a complication,I think)

I'm glad you were able to conceive successfully. Your post has definitely made me feel more at ease! My RE was in meetings all day today but I am hoping to connect with him tomorrow. I always get into trouble googling. Embarrassed

itsmevkb · December 2009

Very little good ever comes from googling and yet it's like we just can't help ourselves.

I would think that the silent killer you read about is referring to DVTs which are very serious. For me I had very bad pain in my calf which turned out to be a clot but my understanding is that many people who have clots never feel them until they break off and lodge in a lung. It's very scary and the reason I don't really mind doing the Lovenox shots.

I think it's something like 1 in 24,000 people who have a Protein S deficiency so that is probably why there isn't a lot of info out there on it. The good news is that it is totally possibly to still get pregnant and stay pregnant even with this problem.

Let us know what your RE tells you.

c0debabe · December 2009

I also went to see a MFM doctor about this diagnosis. I agree 100% with itsmevkb.

Prior to being diagnosed, I had a blood clot in my lung and was hospitalized after passing out in the middle of campus (I was in graduate school at the time).

Definitely take any prescribed meds and be on the lookout for leg pain or shortness of breath that doesn't go away.

Ginger71 · December 2009

itsmevkb:

Very little good ever comes from googling and yet it's like we just can't help ourselves.

I would think that the silent killer you read about is referring to DVTs which are very serious. For me I had very bad pain in my calf which turned out to be a clot but my understanding is that many people who have clots never feel them until they break off and lodge in a lung. It's very scary and the reason I don't really mind doing the Lovenox shots.

I think it's something like 1 in 24,000 people who have a Protein S deficiency so that is probably why there isn't a lot of info out there on it. The good news is that it is totally possibly to still get pregnant and stay pregnant even with this problem.

Let us know what your RE tells you.

So agree about the googling. This is not the 1st time I have been convinced I was in big trouble health wise. lol! Thanks so much for your support and the info. It really helps to know that there are some ladies on the board who know what I am going through. (and even better to know that you had success!) I will definitely report back

Ginger71 · December 2009

c0debabe:

I also went to see a MFM doctor about this diagnosis. I agree 100% with itsmevkb.

Prior to being diagnosed, I had a blood clot in my lung and was hospitalized after passing out in the middle of campus (I was in graduate school at the time).

Definitely take any prescribed meds and be on the lookout for leg pain or shortness of breath that doesn't go away.

That must have been so scary for you! I'm glad to know you are ok. It's funny that you mention shortness of breath-that happens a lot. I work out quite a bit and do a lot of cardio but going up the stairs sometimes leaves me winded for a while.....Thanks for the advice

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