Protein S Deficiency

What is this? Skip this post if you are more interested in sewing!

Protein S Deficiency is a genetic mutation that means that I don’t have enough Protein S to plug in to Protein C to switch off the clotting cascade when my blood clots to heal a wound. This can lead to clots happening to me when in other people nothing bad would happen.

Not very many people have this deficiency and it seems that most of those who know they have it spend a lot of time online trying to find other people who do. I have yet to meet anyone in real life who has PSD other than other members of my family but the beauty of the internet is that any minority can find like minded (or bodied) souls quite easily and this leads many people to this blog.

What follows are my responses to some of the questions put to Google which then leads to a page here. I thought I put these things all in one post to make it a bit easer for the searchers to find information.

What to eat if Protein S deficient? Can I eat greens with a Protein S deficiency? What about green smoothies and warfarin?

You can’t eat Protein S so don’t think that adding protein to your diet will ‘fix’ your deficiency. Nothing is going to fix it; it is just the way you are.

All over the net you will find advice to cut down on eating greens to reduce the amount of Vitamin K in your diet. This is not good advice. You need all the nutrients in green foods to keep you healthy and if you cut all these from your diet you will feel unwell after a while. Even if you are taking warfarin you still need green foods and although warfarin is battling to deactivate the Vitamin K in your body to prevent over-clotting you can still eat foods with Vitamin K in them. If this idea is a shock because you have cut greens from your diet since taking warfarin, contact your Coagulation Service and ask them if you can go back to regular testing because you want to add these foods back into your diet. It may be that you will need to increase your dose but this is fine. It is not how much you take, but the effect it has on the clotting time of your blood that matters. I take 11mg per day and I maintain a regular diet full of green things that I love like kale, spinach, salads, spring greens and chard to name a few. Don’t binge on greens one week then eat none the next or your INR will start to change wildly! Have a green smoothie one day then steamed greens the next day then salad the next day, for example.

Do I need to wear compression at night? Compression hurts my ankle. When should I start wearing compression after a DVT? Can I buy orange or green compression stockings?

Don’t wear your compression when you are lying down in bed. You don’t need it then as your blood will flow back to your heart without too much trouble and you need to let your skin breathe. This is a good time to moisturise your leg if it is getting dry and flaky too. Use downward strokes when applying any creams to minimise irritation.

Compression will relive the pain you feel when you have a new DVT. Your doctor or nurse will measure your leg and let you know what size stocking you need. You will need a medium compression, not the kind you get in flight socks. In Europe this is called Compression Class 2, in the UK it’s class 3 and in the US this would be something like 30-40 mmHg.(Let me know if I’m wrong about the US one!) Wearing the stocking will feel odd at first and it will be difficult to get it onto your leg at all at first! You will feel better able to stand up and walk once you have it on though so do persist. Your leg will get thinner so you’ll need to get remeasured after about 6 months and you might need a lower level of compression too.

If your stocking hurts your ankle it may be the wrong size or it may be losing its elasticity and wrinkling up around your ankle which will constrict the blood flow and leave grooves in your skin. I have short legs that fit my 5’0″ frame and I wear short stockings rather than regular which helps avoid wrinkling due to the stocking being too long.

You can buy pink, purple,plum, blue and hazelnut coloured stockings in low-ish compression classes from Sigvaris. They used to do green but I can’t find them now and I also haven’t found any orange ones yet. I do wear my compression (beige) with a skirt and only one adult has ever commented on it. I’m wearing mine on my left leg in this picture and it doesn’t look to bad does it? Don’t let vanity get in the way of looking after your leg. Would you like an ulcer or another DVT due to blood pooling in your veins? Of course not! If like me you have Post-Thrombotic Syndrome you are going to be in pain if you don’t wear your stocking and life is too short to spend all  your waking hours in pain.

Statins and warfarin, statins and PSD, Vitamins and PSD or warfarin.

Lots of drugs interact with warfarin in bad ways so you should always ask your doctor if this is the case for whatever they are prescribing to you. Get them to look it up in their big book and don’t rely on them remembering to take your warfarin prescription into account when prescribing something new. Even anti-biotics can affect warfarin action so be vigilant.

If you add new vitamins or supplements to your diet go back to more regular testing to see what effect these have. I have recently added Omega 3 by eating/drinking chia seeds every day to help my dry eyes. I went back to weekly testing and surprisingly the chia has had no effect on my INR which is good.

I’m not taking statins but from what I read, some of them do increase the effect of warfarin. It may be that in the future the anti-inflammatory properties of statins may be part of treatment to help prevent clotting, but who knows.

Is Protein S Deficiency a disability?

This is a tricky one. PSD sort of doesn’t matter until you get a clot so having it doesn’t affect your life although it can affect your mental well-being for a while after diagnosis. I have had a DVT and I don’t feel disabled despite not being able to stand or sit without compression. In the beginning I couldn’t drive because I had to have my leg up if I sat down at any time for any length of time. I couldn’t push Miss Amoo in a pushchair because I couldn’t bear weight on my leg so I put her in a baby carrier and went out carrying both our weights on one leg and crutches! I couldn’t walk upstairs so shuffled up on my bum and showering was tricky because I couldn’t balance well on one leg for too long. Things looked bad but I knew I could get back to sort of normal at some point because I knew that other people did so I kept trying and learned to love wearing compression. Cycling and short walks were good at first but now I can dance, ice skate and even run if I really have to!

If I had not exercised after my DVT and worked to move the fluid out of my poor fat leg and not bothered with compression I would probably feel disabled as the poor functionality of my leg and my pain levels I had at first would have persisted and that would affect everything I do.

The clots can happen out of the blue and you don’t really have a choice about that, but you do have choices about how you deal with things afterwards. Read the Protein S Deficiency forum, join the Facebook group , wear your stockings, take your warfarin, keep active and stay cheerful.

I am not a doctor. I am an informed patient who takes advice from professionals whenever I am in doubt. Please do the same before changing anything about your lifestyle.

Advertisements

16 Responses to “Protein S Deficiency”

  1. I was just diagnosed with protein s after a massive stroke…

  2. I was diagnosed having PSD in 1993, after my second DVT. In my experience, the important thing is to have your INR monitored & adjusted on a regular basis. I have continued to exercise regularly and watch my food intake. Vegetables do not present a danger – only overindulgence might be dangerous. A sudden change in diet can also be harmful. During travel, hydration is extremely important.

  3. Thank you. I could not understand, why healthy lifestyle man like me can heritage PSD? I life green and yoga teacher, how come? I think, I have to follow ‘others’ (the doctor’) in my life.

    • Iyan Remember that you inherit the good from your parents as well as PSD. I inherited this from my Dad but I also inherited many good things from him too. My ability with languages, my interest in words and my willingness to always try to repair things in the home with whatever I can find to do it are all things I share with him!

  4. Found an article from Circulation, from the US. Very important information on when to give and not give warfarin in case of surgery.

    http://circ.ahajournals.org/content/124/14/e365.full

    My resident specialist keeps on refering to stats on administration/witholding of warfarin, but he readily agreed that this does NOT APPLY for people with Protein S deficiency because my statistics have been kept on this rare condition. (1 in 500 patients).

  5. Found another article, by a pharmacist, this time on the same topic. Look at the paragraph preceding the contraception paragraph.

    http://www.pharmacytimes.com/publications/issue/2012/October2012/Protein-C-or-S-Deficiency

  6. I have mthfr so that prompted my dr to test for all the blood clotting disorders. I have mild protein s does this mean I should avoid all vitamin k? I currently eat lots of k and take k2

    • The only time you need to monitor or regulate Vitamin K intake is if you are taking warfarin (coumadin). Keep eating vitamin K rich foods and taking K2 as both are good for bones and health.

  7. Im not sure if Protein C and S are the same or not but from what i read they are identical. I have had over 20 clots both superfacial and deep vein since i was 10 yrs of age. I am now 33. Im battling the healthcare system cause apparently you have to be labeled disabled in order to get any assistance. I cant work full time cause if i do then the ulcers come and open up and dont heal and i wanna cry they hurt so bad at night. anyone have any suggestions or know where i can go to find out anything either email me or reply here zeeangel18@yahoo.com?

    • Protein S makes your blood clot too readily (hypercoagulability). Protein C is the opposite: the blood does not clot readily; this is called Hemophelia. Danger of bleeding to death. They can both be treated with Warfarin to regulate the clotting process. The Tzarist family, in Russia, some 100 years ago had a child with hemophelia. Google: Tzar Nicolas II.

      I do not believe it is the work that creates your ulcers – it could also be the type of work (sedentary, with little movement), lack of physical exercise, poor diet and many other things.

      A circulation physician would be able to explain the process.

      • Oleg I am sorry but you are wrong about Protein C deficiency it too means that blood clotting does not switch off and therefore leaves people with this deficiency at higher risk of DVT and PE>

        Ulcers occur due to slight damage to the skin being unable to heal due to poor circulation. Poor blood supply to the skin is very common in people who have had many clots. I don’t think it is fair to blame someone’s lifestyle for ulceration as you seem to suggest in your comment. Pleas be more considerate in future.

        Heather, what can help ulcers is wearing compression stockings which improve circulation and also protect the skin. Do you wear compression and have you talked to your doctor about the ulceration?

  8. I was diagnosed with protein S Deficiency 7 years ago win i had my 2nd dvt and a pulmonary embolism so nice to find a site with others who have this problem

  9. I found out I have PSD when my dad had a PE and after a series of blood work, he has PSD. I was okay till I went on Oral Contraceptive which triggered a DVT.

    Was on warfarin (2.5mg daily) for 2 years and my doctor decided that it was enough and together, we stopped the therapy. During the period of therapy, I still enjoyed occasional salad and my greens.

    Other than my family, I don’t know many PSDs as well. It seems less common as compared to PCDs. I learn that a healthy and not too stressful lifestyle works pretty well for me.

    Take care everyone. It is possible to lead a relatively normal healthy lifestyle with a little caution here and there and listening to your body.

    • Hi Faith

      I’m glad you are ok. Have you found the PSD group on Facebook?

      I hear what you say about listening to your body but you can’t really tell when you have a clot brewing until it is too late and affecting you so if you aren’t on treatment, wearing compression, keeping active and hydrated are the things you can do then most importantly, keep in mind ‘If in doubt, check it out’. Don’t sit at home wondering if that twinge in your leg is something or nothing.

Trackbacks

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: