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What Causes String Like Bleeding In A Patient With Factor V Leiden Thrombophilia?
Question: Hi Dr,
my name is XXXX and I'm a Norwegian, 49 year old woman who lives Sweden. I have posted pictures of how my blood looks when I'm bleeding. It has been like this since September 2009 every since it comes out chewy lumps and strings anywhere on the body to a greater or lesser amounts.
Since 2009, I have tried to get help and talked to about 8-10 physicians , I have not been able to.
I have a Micro Adenoma on the pituitary gland that has caused adrenal failure. I eat 30mg hydrocortisone Nycomed / day
I have treatment for B12, B9, Vitamin D, Potassium Deficiency
I have three open leg ulcers on ankles that have been open for 2 years now.
2013 I had deep vein thrombosis in the left leg which went from the foot upto the groin, the leg was not swollen or particularly painful, it was just a little discoloration on the calf. At the same time, I also had pulmonary embolism that was not painful either but I had difficulty breathing and a rapid pulse and high blood pressure. Dosed with Waran /Coumadin for 1year. It seemed Waran/Coumadin made the strings and clumps worse. (I have attach photos)
My blood pressure has changed significantly since 2009 at that time I had very low blood pressure, I got blood pressure-reducing drugs in 2014 had then about 180/120 blood pressure and about 110 in pulse.
There have been a normal coagulation investigation and I have Heterozyogt Factor V Leiden R506Q.
Three of my siblings have died. Two of blood clots / heart-related causes 43 years old and 6 months old, do not know if my third siblings death was related. My Mom had throughout her life recurrent deep vein thrombosis, my Dad also had a blood clot in his neck and he has a pasemaker. My brother has had a stroke when he was 39 years old and had several DVT in the legs, he is now 56years.
Sometimes I have strange symptoms..
my vision has disappeared completely for several minutes, and sometimes I fall asleep anny were, it has happend in the midle of conversations but it is not quite like sleeping it is completely black and no dreams ..
I wake up without knowing that I have been out for several hours ..
a few times when I've driven a car I do not recognize familiar places once I did not know which side of the road that was supouse to drive on ..
It can feel like I have a firm pressure around the neck ..
My teeth have cracked in pieces..I can have pain that feels like it comes from inside the skeleton ..
Swollen belly, fat in the stool, abdominal pain ..
Sores and black, blue purple marks on the skin especially on the legs
The worst thing is the fatigue ..
I can not live a normal life ..
can not make appointments with anyone.
or do the things of everyday life ..
I have a 13 year old daughter ..
As I said I have tried to show photos and video of how the blood behaves to several doctors.no intrests. If I could, I had sent you a video file instead. So you could see that the blood comes out slimy. Al the photos are taken wile I'm bleeding so the lumps have not laied and couagulated they came out that way.
My Dad have now lived in Usa in 30 years so I have often wisited him and some times I hade to visit doctors and Hospitals.. there is a big difference between going to the doctor here and in the United States. Sweden is known for social security and free functioning health care system, but the truth is that the system fails patients with multiple diseases and rare diagnoses. And the attitude toward patient differs greatly from how my experience was in the United States. Here the attitude towards patiens are suspision. It appears more and more how many patients do not receive adequate assistance.
Annyway, one and only doctor that looked at my pictures refered me to a Hematologist and a coagulation center but that was stopped two times by the chief physician in the department. He has never met me or seen my pictures / video, I guess he's resoning is that the regular coagulation tests do not show anything unusual. But I think other diffrent tests must show why this is happening. There must be test that can explain this..
What I want to ask you about is ..
I get treatment for the adrenal failure and the vitamin deficiencies.So I dont think I shall feel so very sick and tired that I do..
Could it have to do with the blood thicknes? It is rare that blood is so thick and behaves like this? I can not find anything that describe that online or in books.. I can pull rubber like strings out of me..and I bleed lumps.. I think I need help. Sinse I never seen a Hematologist and can't get refered to one I think I my self has to contact them and persuade them to help me.. can you help me with what shall I write to coagulation center? Anny ideas on what tests that can help me?
Sincerly XXXX, Munkedal Sweden
My blood test 2013-2014
1 2013-01-02 2013-11-20 2013-11-27 2014-0612
P-Transferrin 3,1 gl 1.9-3.3
P-Transf-Järnmattnad(iorn) 15% 10-50
P-urat 382 qmol/L 155-350
P-Urea 9mmol/L 2.6-6.4
P-THS 1.5mlE/L 0.4-4.0
P-Tyroxin,fritt 17.9 pmol/L 11.5-22.7
fp-Triglycerider 2.1mmol/L
P/S Albumin 40g/L 36-45 36g/L 36-45
xxS-ACTH best
P-ALAT 0.15 qkat/L 0.18 qkat/L
P-ALP 1.9 qkat/L 0.60-1.8
P-Fosfat 0.9 mmol/L 0.80-1.5
P-GT 0.4qkat/L
P-järn 12qkat/L 9-34
P-kalium 3.2mmol/L 3.5-4.4
P-Kolesterol 5.0mmol/L
P-HDL-Kolesterol 1.3mmol/L 1.0-2.7
fP-LDL-Kolesterol 2.8mmol/L 1.4-4.7
P-LD 5.7qkat/L
P-Natrium 142mmol/L 137-145
P-Pankreasamylas 0.2qkat/L 0.15-1.10
P-D-dimer 1.0mg/L
P-Kalium 3.5 mmol/L 3.5-4.4 Hemolys
P-CRP 36
P-PK(INR) 2.4 1.5
B-Erytrocyter 5.19E12/L 3.94-5.16 5.27
B-EVF 0.450 0.50-0.458 0.430
B-Leukocyter 9,0E9/L 3.5-8.8 10.3
B-MCV 86fL 82-98 81
B-Hb
140g/L 117-153
B-Trombocyter 283E9/L 165-387
Erc(B)-MCH
-----------------------------
Erc(B)-MCHC 27.0pg 27.1-33.3
-------------
313g/L 317-357
P-ASAT 0.27qkat/L 0.31
P-Billirubin 8qmol/L 5-25
P-Calsium 2.49mmol/L 2.15-2.50
P-Troponin T 10ng/L
P-kreatinin 118qmol/L 45-90
2014-07-17 S-IGF-1
230mg/L 56-194
2014-07-31 Elastas i feaces: >500mg/kg ref: >200mg/kg 0000 (A) P_APTT 30 s 30-42
(A) P-PK(INR) 1.0 <1.2
(A) P-dRVVT screen kvot1.19 0.80-1.20
P-CK
1.7qkat/L
my name is XXXX and I'm a Norwegian, 49 year old woman who lives Sweden. I have posted pictures of how my blood looks when I'm bleeding. It has been like this since September 2009 every since it comes out chewy lumps and strings anywhere on the body to a greater or lesser amounts.
Since 2009, I have tried to get help and talked to about 8-10 physicians , I have not been able to.
I have a Micro Adenoma on the pituitary gland that has caused adrenal failure. I eat 30mg hydrocortisone Nycomed / day
I have treatment for B12, B9, Vitamin D, Potassium Deficiency
I have three open leg ulcers on ankles that have been open for 2 years now.
2013 I had deep vein thrombosis in the left leg which went from the foot upto the groin, the leg was not swollen or particularly painful, it was just a little discoloration on the calf. At the same time, I also had pulmonary embolism that was not painful either but I had difficulty breathing and a rapid pulse and high blood pressure. Dosed with Waran /Coumadin for 1year. It seemed Waran/Coumadin made the strings and clumps worse. (I have attach photos)
My blood pressure has changed significantly since 2009 at that time I had very low blood pressure, I got blood pressure-reducing drugs in 2014 had then about 180/120 blood pressure and about 110 in pulse.
There have been a normal coagulation investigation and I have Heterozyogt Factor V Leiden R506Q.
Three of my siblings have died. Two of blood clots / heart-related causes 43 years old and 6 months old, do not know if my third siblings death was related. My Mom had throughout her life recurrent deep vein thrombosis, my Dad also had a blood clot in his neck and he has a pasemaker. My brother has had a stroke when he was 39 years old and had several DVT in the legs, he is now 56years.
Sometimes I have strange symptoms..
my vision has disappeared completely for several minutes, and sometimes I fall asleep anny were, it has happend in the midle of conversations but it is not quite like sleeping it is completely black and no dreams ..
I wake up without knowing that I have been out for several hours ..
a few times when I've driven a car I do not recognize familiar places once I did not know which side of the road that was supouse to drive on ..
It can feel like I have a firm pressure around the neck ..
My teeth have cracked in pieces..I can have pain that feels like it comes from inside the skeleton ..
Swollen belly, fat in the stool, abdominal pain ..
Sores and black, blue purple marks on the skin especially on the legs
The worst thing is the fatigue ..
I can not live a normal life ..
can not make appointments with anyone.
or do the things of everyday life ..
I have a 13 year old daughter ..
As I said I have tried to show photos and video of how the blood behaves to several doctors.no intrests. If I could, I had sent you a video file instead. So you could see that the blood comes out slimy. Al the photos are taken wile I'm bleeding so the lumps have not laied and couagulated they came out that way.
My Dad have now lived in Usa in 30 years so I have often wisited him and some times I hade to visit doctors and Hospitals.. there is a big difference between going to the doctor here and in the United States. Sweden is known for social security and free functioning health care system, but the truth is that the system fails patients with multiple diseases and rare diagnoses. And the attitude toward patient differs greatly from how my experience was in the United States. Here the attitude towards patiens are suspision. It appears more and more how many patients do not receive adequate assistance.
Annyway, one and only doctor that looked at my pictures refered me to a Hematologist and a coagulation center but that was stopped two times by the chief physician in the department. He has never met me or seen my pictures / video, I guess he's resoning is that the regular coagulation tests do not show anything unusual. But I think other diffrent tests must show why this is happening. There must be test that can explain this..
What I want to ask you about is ..
I get treatment for the adrenal failure and the vitamin deficiencies.So I dont think I shall feel so very sick and tired that I do..
Could it have to do with the blood thicknes? It is rare that blood is so thick and behaves like this? I can not find anything that describe that online or in books.. I can pull rubber like strings out of me..and I bleed lumps.. I think I need help. Sinse I never seen a Hematologist and can't get refered to one I think I my self has to contact them and persuade them to help me.. can you help me with what shall I write to coagulation center? Anny ideas on what tests that can help me?
Sincerly XXXX, Munkedal Sweden
My blood test 2013-2014
1 2013-01-02 2013-11-20 2013-11-27 2014-0612
P-Transferrin 3,1 gl 1.9-3.3
P-Transf-Järnmattnad(iorn) 15% 10-50
P-urat 382 qmol/L 155-350
P-Urea 9mmol/L 2.6-6.4
P-THS 1.5mlE/L 0.4-4.0
P-Tyroxin,fritt 17.9 pmol/L 11.5-22.7
fp-Triglycerider 2.1mmol/L
P/S Albumin 40g/L 36-45 36g/L 36-45
xxS-ACTH best
P-ALAT 0.15 qkat/L 0.18 qkat/L
P-ALP 1.9 qkat/L 0.60-1.8
P-Fosfat 0.9 mmol/L 0.80-1.5
P-GT 0.4qkat/L
P-järn 12qkat/L 9-34
P-kalium 3.2mmol/L 3.5-4.4
P-Kolesterol 5.0mmol/L
P-HDL-Kolesterol 1.3mmol/L 1.0-2.7
fP-LDL-Kolesterol 2.8mmol/L 1.4-4.7
P-LD 5.7qkat/L
P-Natrium 142mmol/L 137-145
P-Pankreasamylas 0.2qkat/L 0.15-1.10
P-D-dimer 1.0mg/L
P-Kalium 3.5 mmol/L 3.5-4.4 Hemolys
P-CRP 36
P-PK(INR) 2.4 1.5
B-Erytrocyter 5.19E12/L 3.94-5.16 5.27
B-EVF 0.450 0.50-0.458 0.430
B-Leukocyter 9,0E9/L 3.5-8.8 10.3
B-MCV 86fL 82-98 81
B-Hb
140g/L 117-153
B-Trombocyter 283E9/L 165-387
Erc(B)-MCH
-----------------------------
Erc(B)-MCHC 27.0pg 27.1-33.3
-------------
313g/L 317-357
P-ASAT 0.27qkat/L 0.31
P-Billirubin 8qmol/L 5-25
P-Calsium 2.49mmol/L 2.15-2.50
P-Troponin T 10ng/L
P-kreatinin 118qmol/L 45-90
2014-07-17 S-IGF-1
230mg/L 56-194
2014-07-31 Elastas i feaces: >500mg/kg ref: >200mg/kg 0000 (A) P_APTT 30 s 30-42
(A) P-PK(INR) 1.0 <1.2
(A) P-dRVVT screen kvot1.19 0.80-1.20
P-CK
1.7qkat/L
Brief Answer:
String like blood and feeling unwell can be due to inadequate medication.
Detailed Answer:
Hello,
Thanks for posting your query on HealthcareMagic.
All your concern is genuine.
You have mentioned that you are suffering from factor V mutation.
Factor V is a protein involved in blood coagulation.
Mutation of factor V leads to clotting of flowing blood in blood vessels.
This mutation is responsible for your deep vein thrombosis and pulmonary embolism.
Blood thinners or anti-coagulants are the mainstay of treatment.
However, the treatment with anti-coagulant has to be monitored at regular intervals depending on the clinical situation.
String and lace like bleeding can be due to inadequate medication.
Thus, you need to stay in touch with your hematologist for monitoring your treatment and starting appropriate dose of anti-coagulant.
Adrenal failure has to be corrected with hormonal replacement and that is required life long.
The replacement therapy has also to be monitored regularly for which you need to stay in touch with an endocrinologist.
Feeling unwell and tired all the time can be due to inadequate treatment.
The dose needs to be monitored and correlated clinically.
Thanks and take care
Dr Shailja Puri
String like blood and feeling unwell can be due to inadequate medication.
Detailed Answer:
Hello,
Thanks for posting your query on HealthcareMagic.
All your concern is genuine.
You have mentioned that you are suffering from factor V mutation.
Factor V is a protein involved in blood coagulation.
Mutation of factor V leads to clotting of flowing blood in blood vessels.
This mutation is responsible for your deep vein thrombosis and pulmonary embolism.
Blood thinners or anti-coagulants are the mainstay of treatment.
However, the treatment with anti-coagulant has to be monitored at regular intervals depending on the clinical situation.
String and lace like bleeding can be due to inadequate medication.
Thus, you need to stay in touch with your hematologist for monitoring your treatment and starting appropriate dose of anti-coagulant.
Adrenal failure has to be corrected with hormonal replacement and that is required life long.
The replacement therapy has also to be monitored regularly for which you need to stay in touch with an endocrinologist.
Feeling unwell and tired all the time can be due to inadequate treatment.
The dose needs to be monitored and correlated clinically.
Thanks and take care
Dr Shailja Puri
Above answer was peer-reviewed by :
Dr. Prasad
hi again dr,
I don't know if you missunderstod my questions..I am not been seen by a Hematologist and I do not medicate with Waran now only from 2013-2014
Under that time my Waran was administerd from PK - section in the hospital that I was admitted to they comunicated with a general dr in my town.
so if I understood your reply you thougt that I was on the medication now and are seen by a Hematologist.. I only was on Waran from 2013-2014
I am trying to be seen by a Hematologist and I have been stoped due to they did not find annything in my general coagulation investigation.
I have bleed lumps and strings in 2009, 2010,2011,2012,2013,2014,2015
annywere from my body it was a bigger volym when I was on Waran 2013-2014
I do not have anny one monerting me for my blood..and I wanted to know if this is commen or rare that one hav this tick blood ..and if you think a Hematologist can help me..I need to know if this can be treated..I do not think they have administerd the right tests on me to find out what is going on with my blood..and that is what i was asking if you think there are other test that can show why my blood is like this..the doctor that tryied to help me ger refered to the coagulation center said thet she have never seen or heard of this happening to annyone.. and as I said I never got referd to the coagulation center it was stopped 2 times becourse my test does not show annything and the dr that stopped it have never met me or seen what the blood look like.
annyone that sees it can se that somthing is verry wrong.
do you think that there are other bloodtest that can explain what is wrong with my blood.
that is what I need to know.
I am so weak and I need to be XXXXXXX to take care of my daughter..so I can not give up. sincerly XXXX
I don't know if you missunderstod my questions..I am not been seen by a Hematologist and I do not medicate with Waran now only from 2013-2014
Under that time my Waran was administerd from PK - section in the hospital that I was admitted to they comunicated with a general dr in my town.
so if I understood your reply you thougt that I was on the medication now and are seen by a Hematologist.. I only was on Waran from 2013-2014
I am trying to be seen by a Hematologist and I have been stoped due to they did not find annything in my general coagulation investigation.
I have bleed lumps and strings in 2009, 2010,2011,2012,2013,2014,2015
annywere from my body it was a bigger volym when I was on Waran 2013-2014
I do not have anny one monerting me for my blood..and I wanted to know if this is commen or rare that one hav this tick blood ..and if you think a Hematologist can help me..I need to know if this can be treated..I do not think they have administerd the right tests on me to find out what is going on with my blood..and that is what i was asking if you think there are other test that can show why my blood is like this..the doctor that tryied to help me ger refered to the coagulation center said thet she have never seen or heard of this happening to annyone.. and as I said I never got referd to the coagulation center it was stopped 2 times becourse my test does not show annything and the dr that stopped it have never met me or seen what the blood look like.
annyone that sees it can se that somthing is verry wrong.
do you think that there are other bloodtest that can explain what is wrong with my blood.
that is what I need to know.
I am so weak and I need to be XXXXXXX to take care of my daughter..so I can not give up. sincerly XXXX
Brief Answer:
Warfarin may have to be started again to combat the symptoms.
Detailed Answer:
Hello and welcome again,
I can understand that you were on treatment with warfarin in the past but now now and you are not seeing a hematologist currently.
But I suggest you to consult a hematologist now since you are bleeding lumps and strings of blood.
This problem is related to blood and the system that controls coagulation and thus consultation with a hematologist is required.
The symptoms of bleeding lumps and strings of blood is strange but it is definitely related to coagulation system.
It is quite possible that warfarin may have to be started again.
Thanks and take care
Dr Shailja Puri
Warfarin may have to be started again to combat the symptoms.
Detailed Answer:
Hello and welcome again,
I can understand that you were on treatment with warfarin in the past but now now and you are not seeing a hematologist currently.
But I suggest you to consult a hematologist now since you are bleeding lumps and strings of blood.
This problem is related to blood and the system that controls coagulation and thus consultation with a hematologist is required.
The symptoms of bleeding lumps and strings of blood is strange but it is definitely related to coagulation system.
It is quite possible that warfarin may have to be started again.
Thanks and take care
Dr Shailja Puri
Note: Do you have more questions on diagnosis or treatment of blood disorders? Ask An Expert/ Specialist Now
Above answer was peer-reviewed by :
Dr. Raju A.T
Answered by
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