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Hi Everyone,
Thank you very much for your help for Tammy! Here are the replies:
she needs to see a good haematologist.
I have coagulopathies that caused osteonecrosis (bone death in 10
joints). I had a Dr Glueck in Cincinnati run some tests on me and he
discovered the genetic cause for them and then prescribed a course of
treatment. I manage most of my problems by taking certain
vitamins in very high doses - folate, b6 and b12.
http://www.jewishhospitalcincinnati.com/cholesterol/osteonec.htm
My particular problem means that I can never take hormones, ever. I
suspect that your friend is probably similar.
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Very, very ironic that you send this message today!! I have been
corresponding to the Antibody Phopholipid Syndrome foundation of
America (ASPFA http://www.apsfa.org/). My brother also had
unexplained bilateral multiple pulmonary emboli in December of this
year. They could find NO reason whatsoever why this would happen and
he is 38! My children had severe clotting abnormalities while on
gluten---which definitely resolves when we are vigilant about being
GF. There still seems to be so much confusion on the relation of
various autoimmune syndromes. They almost had a really, really hard
time believing that our symptoms disappear with a gf diet. Oh
well! You should send your friend to this site----but only after
she has tested for Celiac at Enterolabs!! The docs at this site are
pretty unwilling to acknowledge the connection between gluten and autoimmune.
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Susan, your friend needs a serious talk with her doctor in order to
become educated about her health problems! If she has a history of
pulmonary emboli - which is life-threatening - she will need to have
occasional blood tests. One of the blood tests is called Prothrombin
Time and one of the components is expressed by INR. She does not
*get* INR, nor does INR reappear as a disease, it is simply a way to
measure the "thickness" of her blood, or it's clotting ability.
If her blood does get too "thick", she needs to know this and take
blood thinners again. Coumadin, or it's generic equivalent, Warfarin,
is used by millions of Americans for this purpose and is the accepted
and appropriate medical treatment. If she needs to take this medicine
again, I hope she will not think she is being poisoned! The reason it
is used in rat poison is because it 's used in that case in huge
doses which make the rats bleed internally and die. However, in
appropriate human, dosages, it could save her life.
Once on a blood thinner, this person then needs to have a blood tests
every couple of months to be sure that the right balance of
medicine/clotting is maintained. Some offices now have the equipment
to do this blood test by fingerstick rather than by
venipuncture.Perhps she could find such a facility.
Another blood thinner is heparin which is given by injection. In
reality, your friend can be glad that her condition 1) does not need
surgery 2) CAN be controlled 3) needs only a small daily pill and
not an injection. But she needs to cooperate with and trust her
physician and communicate with him in order to get the care she
needs. I hope she will. Another blood clot might not go to the lungs
- it could go to the heart - or to the brain.
**************************************************
have no personal experience with pulmonary embolism, but my feeling
is that it doesn't hurt to suggest a link to celiac to anyone who is
open to finding the cause of their illness. Then it is up to the
person, of course, in terms of what they want to do with the info.
I hope that your friend can get tested for CD; she's so young to have
to face such a life-threatening illness, if in fact there is a gluten
connection and hopefully she can go GF and get great relief.
***************************************************
In October, I had multiple clots in both lungs. The only risk factor
was that I was over 35 and was taking the pill to level out my
hormones. I started taking them in May/June and a month or two later
I started feeling short of breath when I exerted myself and it
gradually worsened. I didn't think much of it--just figured the
excess weight and not being in shape was catching up with me.
In September, I got the flu, which turned into pneumonia...or so we
thought at the time, anyway. When the breathing was still a problem
after the pneumonia was gone...only worse, the doctor sent me in for
an echo cardiogram, which came back normal. He was going to send me
for asthma testing, but before that could happen, I passed out and
had to be taken via ambulance to the hospital. I'm just thankful
that my husband and sons were right here and I wasn't out in a store
or driving or something.
They found my clots with a dye-type CT scan. The pulmonary
specialist (aged in his 60's) said he had only seen one other case
this bad in his career. It was very scary. I'm still on Coumadin
(generic name is Warfarin) for another couple of months. While it's
a scary drug, I'm a little scared to go off of it because I never
want to go through something like that again. I'm thinking they'll
probably put me on Plavix or at least a low-dose aspirin, but I'm guessing.
At the same time--September/October, I was trying to figure out if I
had celiac or a gluten intolerance, so I had been working on going GF
when I was admitted to the hospital. They continued it there and
I've been GF ever since. It's been such a dramatic difference. The
GI doc won't do a biopsy while I'm on Coumadin, of course, so this
works for now.
Something I was reading about was that celiac can be a problem in
relation to clots because the body isn't absorbing the right amount
of vitamin K, even if we are eating the right amount. Also, I was
popping at least a couple of antacid tablets every day because of the
intestinal problems. Antacid can also deplete the vitamin K, as can
antibiotics. Now, I don't know if this is the cause, but it seems to
make sense.
******************************************
It is totally understandable to be remember the embolism experience
with fear...
My husband has long had a blood /clotting abnormality...likely
genetic. I am celiac...he is not.
It is difficult to say with certainty that celiac is connected to
abnormalities in clotting...
My husband has done very well once he went on and monitored VERY
CAREFULLY, I repeat very carefully and very often, the coumadin he
had to take and still takes..going on twenty years now. Three are a
couple of dietary restrictions (foods that promote clotting)... The
blood testing is essential, and simply becomes a fact of life. He
has had three embolisms...but none once he went on coumadin
permanently. He travels abroad constantly (as you know long air
plane trips are a major contributor to embolism). He's doing just fine.
My heart goes out to anyone who has this burden...but I also know
from our experience (and it may not be the same as anyone else's)
that if you conquer the fear part, hook up with a good HEMATOLOGIST
(not a GP...GP's can usually manage long term testing.. someone who
has severe/difficult blood issues needs to be seen for a while by a
first rate blood specialist, usually to be found in an
academic/research /teaching hospital....you should , in the long run,
do well. This is not something to fool around with. You need to
find the right physician.
It's a scary business...but it can end up just fine.
*********************************************
This person is at serious risk and should not have
just taken herself off coumadin/warfarin! Please
encourage her to see a hematologist to diagnose her
correctly and work with her. She could be on shots
instead of coumadin, this would require few, if any,
blood tests.
***********************************************
If she is bleeding too much, maybe she could use a lower dose?? I
think she should find a hematologist at a university hospital if possible.
................. continued
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