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Anyone else protein S deficient and on heparin?

(10 Posts)
StarBee123 Tue 03-Jan-17 12:27:35

Hi everyone,

I'm just looking for some advice / reassurance really. I'm pregnant again after 3 consecutive mc and as a result I was sent for tests at the recurrent miscarriage clinic a few months ago. One of the tests indicated that I'm ever so slightly deficient in protein S (which can increase chances of blood clots / cause miscarriage). They also informed me that I have coeliac disease which I have no symptoms for but have been advised I need to go onto a strictly gluten free diet once pregnant.

Prior to my 3 mcs, I have one DD (who is now 3 and a half) who I had absolutely no complications with and had no idea I had any underlying conditions at that point. My concern is that I am being told I should be taking heparin which is on top of the cyclogest, high dose folic acid, multivitamins and gluten free diet and not to mention terrible all day nausea and sickness. I know I probably sound really stubborn and silly but the heparin injections are just one step too far for me. Also, the doctors at the mc clinic asked me to take part in a clinical trial to prove whether heparin even actually works, which begs the question is it worth putting my body through more pain and anxiety (slight needle phobia) for something they're not sure will make a difference or not. But then I am beating myself up that I'm not giving this baby every opportunity I could.

I'm otherwise fit and healthy, am totally on board with the other medication and gluten free diet (as boring as it is) and am not at all overweight which can significantly increase the risk of clots. I know I sound like I'm talking myself out of it because of the needle phobia but I would do it if I felt strongly it would make a difference... I also didn't feel confident the doctor I saw the last two times really knew what she was talking about (kept having to go and check things in another room etc and hadn't read my notes properly so I had to correct her on things). I was just keen to hear stories of others who have this condition or similar and what your thoughts are. I have read a lot of articles backing up the theory that heparin isn't as an effective treatment as they once thought and also there are risks when you get to labour, but I'm no expert. Any advice / experiences would be welcomed even if it's to tell me I'm being stupid and to start the damn treatment grin . Anyway thanks for reading and happy new year to you all.

Blueskyrain Tue 03-Jan-17 14:23:20

I'm possible protein s deficient (am being tested for it next week, but it's 50-50. I've got a severe needle phobia though, so not sure what they'll do with me. If I am protein s deficient, then we can perhaps compare treatments. Interestingly coeliac is in my family too. I wonder if there's a link.

StarBee123 Tue 03-Jan-17 15:21:26

Hi Blueskyrain,

I'm thinking the same thing.. as Coeliac causes malnutrition it could well be they are linked. I asked if there was another treatment aside from the injections but apparently you can't take it orally as stomach acid destroys heparin. And asprin doesn't work for this deficiency either. There is such little information out there about protein S deficiency so it's hard to understand if it can be controlled with a healthy diet and exercise. Good luck and I hope your tests come back clear. Are you being tested for coeliac too?

Blueskyrain Tue 03-Jan-17 15:29:52

I'm not being tested for anything else at the moment. Its such a rare condition, we may well be distantly related for all we know.

Protein s is all over my family, though it's never to my knowledge caused any issues with pregnancy.

There is a website with a very old (not really live any more) forum on it which may be useful to browse through. There's a lot on there about pregnancy.

www.proteinsdeficiency.com/forum/index.php

My mum had to inject heparin daily with me, but only.after a PE whilst expecting!! A cousin of mine was put on it throughout as a precaution, others haven't been. I think it depends on your haematologists view.

StarBee123 Tue 03-Jan-17 15:53:00

Thanks for the information and best of luck to you for next week. I will have a look at that thread, let me know how you get on!

Alj001 Tue 03-Jan-17 20:25:07

Hey, I'm really sorry to hear about your previous miscarriages. I don't have a protein problem but I didn't want to read and run.
I'm 31 weeks pregnant and I have been on heparin/ clexane injections since I was about 6 weeks pregnant due to a previous DVT and pulmonary embolism. I used to be terrified of needles but it's surprising how much you get used to doing it when you need to. If your doctor recommended the heparin it is probably best that you do use it or at least talk your concerns through with a doctor or midwife. I had a nurse show me how to do the injections properly and it really helped

StarBee123 Wed 04-Jan-17 11:52:03

Hey Alj, thanks for your advice. I understand it would make sense if you have a history of DVT and PE. I'm sorry to hear you had to go through that. When will you stop the injections and does it have an impact on whether you are able to have a C-section if needed? I have heard it can mean you are unable to have one depending on how long ago you stopped the injections. I'm not planning to need one but my DD almost ended up that way but luckily was delivered by forceps just as I was about to be operated on! The main thing is she was ok but this is another risk I'm worrying about. I'm going to see the midwife tomorrow so going to have a good chat with her about all my concerns and see what she says. Congratulations on your pregnancy and wishing you and bump a healthy and happy pregnancy and beyond.

caramelgirl Wed 04-Jan-17 23:21:06

Just been put on clexane yesterday. Haemotologist said it was an "on balance" decision- so not really clear cut. I am a bit gutted- looks like there is a mild association with osteoporosis and unclear if it impacts breastfeeding.
I'm also on progesterone (utrogestan) .
Am 11 weeks so that's a lot of painful injections. I'm not needle phobic but it is quite unpleasant.
Third baby but eighth or so pregnancy- history of v early mcs. Am older too, 38, was 30 for 1st and 34 for 2nd, tho' Gynae said this wasn't age related.
Good luck

INeedNewShoes Wed 04-Jan-17 23:31:02

I have no idea whether this is the same thing but my blood has anti-S antibodies. As well as this I have a couple of other blood disorders.

I've had two chemical pregnancies and a MMC within the last year. I'm pregnant again and have got to 22 weeks this time. I'm quite convinced that it must be the heparin I was put on in September that has allowed this pregnancy to progress.

I can't help with your specific question but I understand your reluctance to take medication potentially unnecessarily. For me, it seemed worth a try.

I've been told to stop the heparin and aspirin either as soon as early labour starts or the morning I'm due to be induced (I'll be induced at 38 weeks due to one of my blood issues). I think heparin only stays in your system for 12 hours so it's generally straightforward enough to have it out of your system at the point you give birth.

StarBee123 Thu 16-Feb-17 13:09:10

Hi. So just thought I'd update any of you who may be going through a similar thing.

Stubborn as I am, I went to see another consultant and voiced my concerns over taking a drug which may not work for my condition and had risks attached to it. She actually agreed with me as there is more and more evidence against using heparin for protein S deficiency specifically, and as my deficiency is so slight and there is no family history or DVT or clots, she suggested that I keep mobile (which I am with swimming and walking and running around after my 3YO DD) and keep hydrated as apparently this is also a cause of clotting. I also have to wear very sexy green compression stockings when I'm at home which is perfectly fine. I am now 15w5d and starting to feel flutters which is very exciting and scans have so far all been fine. I will have to go and see a haematologist for a third and final opinion, so I'm just waiting for that appointment and am aware they might tell me something different again... but for now I'm enjoying a normal pregnancy. I am paying very close attention to my body though so if I get any signs of pains in my legs or elsewhere I will be straight back to the docs. Thanks for all your advice and support and hope all you lovely mums to be are having a good pregnancy x

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