Posts tagged ‘protein s deficiency’

March 12, 2012

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.

September 1, 2010

Not Much

The blood eh? Fickle stuff I tell you!

It seems that eating 2 brazil nuts a day really can affect the way your thyroid works and the new blood results show that my thyroid function is now normal and not borderline-not-normal as it was before. Unfortunately this leads this line of inquiry into my current lack of zing and numerous other thryoid-y symptoms into a dead end. In better news, the green eating I’ve been doing to keep me together has not made any massive difference to the warfarin function so no dose change is necessary. Steady and even works; bingeing on greens doesn’t.

Miss Amoo has been doing some labelling instead of tidying up the mess on the floor



You are never too young to learn about displacement activity! I bought this chest about 10 years ago from a man I used to know when I had a market stall in the centre of Oxford.

It houses everything from pencils to tools and phone chargers to sewing notions, sticky tape, string and socks. We all know which drawer has what in it but periodically someone in the family will do some labels and they last for a couple of months before being lost again.

Does it feel like autumn to you? I love this freshness and the change in the light but the nights are drawing in already so we’ve been out and bout in the sunshine while we can.

Round and about here over the last few weeks we have been picking mirabelles, apples, blackberries, plums, elderberries and pears. The mirabelles are now jam, the elderberries are cordial and the apples and pears are in our belies. The blackberries have been sparse so the few we picked yesterday got mixed in a very purple smoothie with bananas and peach. It tastes better if you sieve the seeds out!

Miss Amoo is also carrying out an experiment to see if a green tomato inside a clear plastic box left in sunshine will ripen or not. Day two and the verdict is ‘no change’.

My experiment with a chilli plant is only slightly more successful as we have watched several flowers appear then fall until one turned into this:

The courgettes are being nibbled by something which only likes the green skin so we are picking them small unlike last year when they got this big

All this and no sewing. Damn.

August 19, 2010

Blood

It slips around the body silently unless you press on its transport system somewhere and freak it out. It carries goodness and badness, health and sickness, struggle and conflict round and round and round. I love the fact that my lungs oxygenate blood and keep my cells alive; that the fighter cells fight off attacks; that the badness is removed by my kidneys and that new cells join the party from my bone marrow.

What I don’t like is that most of the time I have no idea what my blood is doing and it is only when things go wrong that you realise it is a miracle that the body functions at all. Once you know that something isn’t working as it should you find that the blood holds many, many secrets. Mine looks like ordinary blood in the test tube but it isn’t.

The red stuff is secretive but once nursie has stuck a needle in you the darned stuff is very willing to give up it’s secrets to the lab coats. Mine used to betray the fact that I may have missed a dose of warfarin but this has not happened at all since I decided to take my pinks or blues or browns just before I go to bed at whatever time that happens to be.

Who on earth thought that advising patients to take warfarin at 6pm was a good idea? It was probably a man who doesn’t stand in his kitchen at that time trying to get food from the fridge to the hob to the table to feed six people whilst breastfeeding a toddler. I wonder why I had trouble remembering to take the tiny tablets?!?

Bingeing on greens isn’t good either as they are full of Vitamin K which is exactly what the warfarin is trying to get rid of to stop the blood overclotting. It is is a myth that warfarin thins the blood you know, it doesn’t. It interferes with the vitamin k produced by the liver and tries to stop it working to help the clotting cascade. Stoking your body up with vit K through eating food rich in it rich foods kind of doesn’t help but I can’t live without eating green stuff and start to feel rough if I don’t get enough. Try this: a handful of spinach, and apple and a banana in the blender with half a cup of water. Yum. Even the kids like it.

The frequent blood tests that warfarin patients have are to check how long the blood takes to clot. Ideally it should take between twice and three times as long to clot than ordinary blood which is fun when you slice yourself with a bread knife and can’t find a tissue.

This week I am waiting to see what mine gives up and I hope it will back me up but it might equally let me down and the pisser is that I can’t be sure which way it will go. The smug-faced GP may yet have her smug face on again when she tells me that there is absolutely nothing wrong with me and I just need to take the statins (eek – at 36?), get more exercise and, most importantly, reduce my stress levels.

There, there it is all in your head, dear. Does she think I haven’t thought about how to step off this corner of the world and get onto a more peaceful one? The funny thing is that she is due to go off on maternity leave with her first child so she is about to find out why things aren’t as easy as one might to think. Ha.

So this week’s test may prove that it isn’t in my head and that green smoothies aren’t a bad thing or it may go the other way.

July 2, 2010

Compression stockings for treatment of DVT

I noticed that someone found my blog yesterday by googling “my compression stocking”. If you are here again today – hello!

In case anyone else is looking for information about DVT and compression stockings I thought I’d tell my tale. If you aren’t interested in all this palaver then skip this post and come back another day!

I was diagnosed with Protein S Deficiency in 1995. I went for a repeat prescription for the Pill and met a student doctor who asked me about my family history of blood clotting. No-one else had ever asked this but he had swallowed a new research journal and was doing the job properly. On hearing that my Dad had had at least two DVTs he refused to write me a prescription and referred me for blood tests and then on to the haematologists. They confirmed that I did have PSD but didn’t have any of the other clotting problems that are out there.

I didn’t actually get a DVT until the summer of 2003 when Miss Amoo was only 8 months old. I had felt uncomfortable behind my knee on the Friday but put it down to walking back from somewhere fast in order to get to the school gate by 3pm. By the time I woke up on Saturday morning my leg was twice its normal size and I couldn’t bend it or bear weight on it so off we went to hospital.

After some humming and haa-ing a cluster of junior doctors and a smelly consultant conceded that I might have a DVT (PSD and familial history plus fat swollen discoloured leg?!?! No Sh*t Sherlock) Anyway thanks to the ultrasound being understaffed on a Saturday it took until the afternoon for them to confirm a clot and me to get any treatment. If it were to happen again I’d be much less compliant and patient!

I was home on crutches the same day and couldn’t put my leg down for weeks as it hurt horribly. I had it up on the arm of the sofa in the day, or resting on the nappy bucket under the kitchen table when eating. I got up and down the stairs on my bum, I showered with my leg on the side of the bath and washed up with my leg bent behind me resting on the nappy bucket (it was the right height for all sorts of jobs!) Driving was impossible so I sat in the passenger seat of the car with my leg on the dashboard while Mr G acted as my chauffeur and hoped we didn’t crash into anything and snap my leg off! At night I slept with pillows under the end of the mattress to keep the leg above my heart and help the fluid drain out of the poor swollen thing.

I went to the DVT clinic every other day and they scanned my leg to see where the clot was as well as dosing my warfarin and taking bloods. The proper scan was a revelation; a clot isn’t just a blob you know! Mine is a long, long thing that reaches all the way from my ankle to at least my groin if not further up and it is in the biggest fattest vein in my left leg, known as the popliteal below the knee and the femoral above the knee.

I have little legs so even once I had a prescription from the DVT clinic for compression it took 2 weeks to get to me as they don’ t have many in size one petite. What a relief! These were Mediven Plus in EU compression class 2. They calmed down the swelling in my lower leg and really eased the pain but above the knee was still massive and I still couldn’t wear any of my trousers because I couldn’t get my leg into them. The DVT nurses suggested that I try a Medi thigh length stocking to see if that helped and although it wasn’t very comfortable I did notice a reduction in swelling all over my leg after a couple of months. I wasn’t sat on my bum all day though: I was walking as much as I could bear, cycling a lot and just managing to keep up with a toddler and two other children.

If you have pain and swelling you need compression and movement. If your leg hurts it is because the blood that should be getting up your leg and back to your lungs is getting stuck in all the tissues in your leg because your vein isn’t working properly. The compression is graduated, so tighter at the ankle and less tight at the knee. It works by helping to squeeze the blood up from your ankles so it doesn’t get stuck and pool in your tissues. Walking or cycling activates the ‘foot pump’; a muscle in the sole of your foot which works to pump blood away and up your legs helped by the calf muscles contracting.

Just waggling your ankles doesn’t make this muscle do its job: you must bear weight on it. If you have swelling the only way you will be able to bear weight comfortably is if you have compression stockings on so wearing compression is a top priority.

Unfortunately the best compression is not available on prescription but it is worth trying out a few brands to see which one suits you and fits you most comfortably. I once had some Credelast stockings prescribed by the GP and they were horrid even though they were free. My current favourite stocking is the Juzo Soft in calf length. It only comes in beige or black so I wear beige in the summer and black in the winter. I get them direct from Juzo (click on the UK flag for their phone number for ordering) for just under £30 per pair and although I wear open toe because I hate socks as a rule so this is the least worst option, they do have closed toe too.

My absolute favourite stocking is made by Sigvaris but they are silly expensive at around £50 per pair. If you want a coloured stocking or patterned or almost transparent for every day or a special occasion to wear with a party dress then Sigvaris is where to look.

So after that product placement, back to the tale. It is now 7 years since my clots formed and most of it is still there in my vein. Blood flows past it but my valves don’t work and blood still doesn’t move up my leg very well at all. Despite wearing compression every day and exercising plenty I have post-thrombotic syndrome. I am pain-free when wearing compression but every now and then I still get pain and when that has happened I end up going to A&E to get a second opinion. Mostly these episodes have been bouts of phlebitis which is inflammation of the vein and feels as if your skin is on fire from somewhere deep within the leg or just more unexplained swelling but I haven’t had another clot. And since I’ve been taking warfarin (coumadin) I worry less about getting another clot and take the odd pain here and there without panicking like I used to.

If you are at the start of your DVT and compression journey, don’t lose heart. Get the stocking on and get moving. In the beginning I couldn’t imagine getting upstairs easily or driving the car but now I am happy to say that I can walk for miles, ride a bike, run (if I really have to) ice skate (yay!) and dance at ceilidhs.

So don’t despair and don’t suffer in silence. If you have pain ask your DVT nurses to help you find a solution and if you ever feel tightness in your chest or get an uncomfortable feeling you can’t explain, don’t worry about it turning out to be nothing, get it checked out.

I know that a lot of readers have found this post through Google searches about compression and DVT so if you have anything you would like to add that you think might help others, or if you want to share your own experiences please do write in the comment box below. If you blog about this kind of stuff too then put your blog addy in the comment box too. It is easy to feel lonely with this and the more people talking about it the better.

If you have been diagnosed with Protein S Deficiency and want to know more about it please take a look at www.protein.org.uk where you will find a wealth of information about this condition and a forum full of other people who know what your concerns are and can help you on this new journey.

I have written a new post about PSD and compression stockings and diet when taking warfarin/coumadin and you can go here to read it.