Home Looking for info on Protein C and Protein S deficiency

[DivaDiamond007]

As some of you may know from the mommy thread, I was diagnosed with a blood clot in my left calf on June 9. I had injured my calf about a week before that and also took bc pills for around 12 years, which increases your risk. Because I am so young (27) my family doc sent me to a hematologist for some additional blood work. I was positive for being a carrier of the hetero MTHFR C677T gene mutation and also have a Protein C and Protein S deficiency. I am meeting with my hematologist again on Friday to get some more details on what this means for me. I am on warfarin and aspirin therapy right now for treatment, and also undergoing aggresive physical therapy because my muscles in my calf atrophied and I haven''t been able to walk for about 8 weeks.

Does anybody have any information about the protein deficiencies? I''ve read some material online but it doesn''t make much sense to me. Thanks for any insight!

 

[Mrs]

Diva, I''m afraid I don''t know anything about protein deficiency but just wanted to send my support! I''m hoping this isn''t anything serious and am sending healthy vibrations in the hopes that your calf heals quickly!

Mrs

 

[DivaDiamond007]

Thanks MRS! My leg is getting better slowly but surely. I am able to put weight on it now without pain or cramping, which is a huge improvement. I still need crutches for support but hopefully I''ll be able to graduate to a cane soon. I feel like such an old lady!

I don''t have much flexion or extension in my ankle so walking normally or in bare feet is really hard. Thanks again!

 

[LtlFirecracker]

What kind of information are you looking for? The clotting pathway is very detailed and every medical students worse nightmare to memorize, so I don''t want to tie you down with those details unless you want them.

If you could ask more specific questions I will try to answer them tomorrow evening.

 

[DivaDiamond007]

Date: 8/4/2009 12:33:02 AM
Author: LtlFirecracker
What kind of information are you looking for? The clotting pathway is very detailed and every medical students worse nightmare to memorize, so I don''t want to tie you down with those details unless you want them.

If you could ask more specific questions I will try to answer them tomorrow evening.

I guess I don''t really know what I''m looking for! I''ve looked up some info online and it just confuses the heck out of me since I''m not in the medical field. I''ll try though since I''m curious...

1. Is MTHFR a clotting disorder? I was told it wasn''t, and my mother also tested positive for it. I brought it up at my son''s 1 year well check and the doc wasn''t worried at all and didn''t think it was necessary to have him tested. He''s been healthy since birth.

2. I know that Protein C deficiency can be acquired or hereditary, but how do you know which one you have? I have a strong family history of vascular problems, but also took bc pills for about 12 years - so I have risk factors from both ends.

3. I had two blood transfusions when I gave birth last year. Could this have caused the deficiencies? As far as I know I was given the correct blood type in the transfusions (I''m O-). I may request the hospital records just to be sure, however the transfusions were given in an emergency situation and I didn''t really have much choice in the matter.

4. I was taking warfarin at the time the bloodwork for the protein deficiencies. How much does this affect the results? My numbers were very low for both - C was at 10 and S was at 25.

5. If I am indeed deficient in one or both proteins, is this treatable? I''ve read that warfarin for life is usually prescribed, but I want to have another child, and I''ve already been told that pregnancy and warfarin are not compatible.

6. How prevalent are the deficiencies? Some of the stuff I''ve read says less than 1/2 of 1% of the population

I am meeting with my hematologist on Friday so I''ll have some answers then, but in the meantime I''m worried and scared. Thank you so much for your offer to help!

 

[Lillers]

I''m a PharmD who used to work in a Coumadin Clinic (warfarin), so I am pretty familiar with clotting disorders.

Some basic info: Proteins C and S are your bodies natural anticoagulants. When you have a deficiency, you are in a "coagulable state", which means you are likely to have clots.
Warfarin is an anticoagulant, which helps keep your blood from forming clots.


1. Is MTHFR a clotting disorder? I was told it wasn''t, and my mother also tested positive for it. I brought it up at my son''s 1 year well check and the doc wasn''t worried at all and didn''t think it was necessary to have him tested. He''s been healthy since birth.
It isn''t a clotting disorder, although I believe that they thought it was in the past. It is actually really common, and something like half the US population is a carrier.



2. I know that Protein C deficiency can be acquired or hereditary, but how do you know which one you have? I have a strong family history of vascular problems, but also took bc pills for about 12 years - so I have risk factors from both ends.
I''m not sure how you can tell if it is acquired or hereditary. I know most of the acquired cases are associated with severe illness though. BC pills won''t cause the deficiency, but they do add an independent risk factor for a blood clot.



3. I had two blood transfusions when I gave birth last year. Could this have caused the deficiencies? As far as I know I was given the correct blood type in the transfusions (I''m O-). I may request the hospital records just to be sure, however the transfusions were given in an emergency situation and I didn''t really have much choice in the matter.
To my knowledge, the blood transfusions cannot have caused that. I may be wrong about that though. Most "wrong type" blood transfusions cause a rejection-type response, which can be life threatening.


4. I was taking warfarin at the time the bloodwork for the protein deficiencies. How much does this affect the results? My numbers were very low for both - C was at 10 and S was at 25.
Warfarin DOES affect proteins C and S. It inhibits Vitamin K, which through a cascade, helps keep your levels of Protein S high. I would ask your MD about this if you are concerned the test wasn''t performed correctly. They may "correct" for the fact you are on warfarin in the laboratory.



5. If I am indeed deficient in one or both proteins, is this treatable? I''ve read that warfarin for life is usually prescribed, but I want to have another child, and I''ve already been told that pregnancy and warfarin are not compatible.
It isn''t treatable, per say. You do have to take anticoagulants for life, to make up for the fact your body is lacking in natural anticoagulants. Warfarin is the oral tablet. It is absolutely contraindicated in pregnancy. They do have a similar medication in injectable form called either Lovenox (enoxaparin) or heparin. Both of those are safe during pregnancy. You will also have to switch while you are TTC. You can inject them at home and a nurse can teach you how.


6. How prevalent are the deficiencies? Some of the stuff I''ve read says less than 1/2 of 1% of the population.
I have heard similar figures to that, although I do see a decent number of patients in my clinic with this sort of problem.


I am meeting with my hematologist on Friday so I''ll have some answers then, but in the meantime I''m worried and scared. Thank you so much for your offer to help! [/quote]


I hope that helped! I''m not an MD by any means, but I do dose warfarin on a daily basis for a hospital, so I am pretty familiar with clotting disorders. Please let me know if you have any more questions.

 

[LtlFirecracker]

I think you got most of your answers. I am going to answer the questions I know off the top of my head. If I wright see above, I am referring to Lillers thread. She has much more experience with this than I do. The rest would be best for you hematologist.

1) see above

2) I think your genetic testing will tell you if it is acquired or hereditary. As stated above, OCP do not cause the deficiency, they raise your risks for blood clots, but that is only when you are on them.

3) When you got your blood transfusions, I am assuming you got just packed red blood cells (whole blood = red blood cells + plasma). When someone donates blood, there blood is separated into the red blood cells and the plasma. The plasma actually has the clotting factors in it. If someone needs clotting factors they get a blood product known as fresh frozen plasma or cryopartispate. I have never herd of any of these products causing a protein C, S deficiency

4) see above

5) see above - you would need to change to heprin or lovenox during pregnancy. These are both meds that have to be injected, so that is why they are not used as often, but when you are pregnant, they are really the only option you have.

6) The figures I saw were up to 2-3%. But these numbers very on the region and the way the studies were done. Most of the protein C and S deficiencies (the congenital ones) are autosomal dominant, meaning you only need to have one bad gene to have the problem. However, you will need to discuss the etiology of your specific disorder with your hematologist. There are tests they can do to look for the mutations, but they are really slow. So there might be some waiting.

I would bring a list of questions to your hematologist and put them in order of most important to least important. That way you don''t leave forgetting to ask the one thing that was really bothering you. Hope this gets figured out.

 

[DivaDiamond007]

Thank you both for your replies to my questions!

The information was very helpful to me and I''m less anxious about seeing the hematologist again on Friday.