What tests do I need, re. PE attacks?

[Transpilot]

I've been following this forum for a couple years. I believe @bbchien is the authority. My issue is not getting back in the air. Basicmed is the answer to that. But, I don't care to die, nor remain on blood thinners for the rest of my life.

Here are the facts:

1. I have had two PE attacks. After the first they put me on coumadin for four months. About six months after that, I had another. By the way, I took ibuprofen before both attacks. I don't know if it is related, but in researching, ibuprofen is a bad actor and causes blood clotting, and for that reason is prescription only in several other countries. I'm not a doctor.

2. During the period after the first attack, after I came off coumadin, and before the second, I was supposed to have taken a battery of tests to find out why. That didn't happen. Blame corporate medicine.

3. After the second, they put me on Pradaxa and told me they can't run the tests they needed to run, because now I am on blood thinners. And by the way if I go off blood thinners I will die, so...

4. I have zero family history of PE attacks, blood clots, or any form of cardiovascular disease.

Here are my questions:

1. Are they feeding me a BS line about "the tests" being invalid when I am currently on blood thinners?

2. I don't know what "the tests" are. Are there tests that can be run while I am on blood thinners to determine the root cause? Again I'm not looking for FAA standards. I want to know the truth.

3. If in fact I do have to go off the thinners to get the tests done, how long do I need to be off them? I think if I can last 4-6 months, I can last 4-6 weeks. Doc did say I probably won't walk away from a third attack.

 

[PaulS]

I have a friend who is on blood thinners for the rest of his life. When his pulmonary embolism problem first presented, they determined he had about 20 clots in his lungs. He has a family history. Don't mess with this, you should have a primary care physician plus specialists managing this, not the internet. If you don't like the answers they are giving you, get more opinions. You don't have to take medicines you don't want to take, but from what you say if you stop the blood thinners you will be off them for the rest of your life, but the rest of your life might be very short. Stay well.

 

[benyflyguy]

Were your attacks provoked or unprovoked. Meaning did you have surgery recently or injury or prolonged immobility? If you’ve had two unprovoked attacks you are on life long anticoagulation. You can run part of the hypercoag work up on ‘blood thinners’ but one or two tests won’t be valid. Can do mthfr gene mutation which is a more common offender

 

[Trans pilot]

Were your attacks provoked or unprovoked. Meaning did you have surgery recently or injury or prolonged immobility? If you’ve had two unprovoked attacks you are on life long anticoagulation. You can run part of the hypercoag work up on ‘blood thinners’ but one or two tests won’t be valid. Can do mthfr gene mutation which is a more common offender

No, not at all, and again zero family history. I do not understand the gene mutation thing.

Oh by the way, my choice of username is an unfortunate coincidence that I have noticed in replying to the thread. I am not at all related to the other transpilot poster.

 

[benyflyguy]

No, not at all, and again zero family history. I do not understand the gene mutation thing.

Oh by the way, my choice of username is an unfortunate coincidence that I have noticed in replying to the thread. I am not at all related to the other transpilot poster.

You can’t do the protein c, activated protein c, activated protein S, lupus anticoagulant. And antithrombin. These are the meat of the hypercoag work up but admittedly the diagnosis yield is low.
you can do the MTHFR gene mutation, homocysteine, and factor V Leiden. These are the tests that IMO have more diagnostic yield.
As for aviation stuff and this. I have no clue. But it sounds like you had two unprovoked thrombotic/embolic events. Likely lifelong anticoagulants are in your future.

 

[av8npa]

You can’t do the protein c, activated protein c, activated protein S, lupus anticoagulant. And antithrombin. These are the meat of the hypercoag work up but admittedly the diagnosis yield is low.
you can do the MTHFR gene mutation, homocysteine, and factor V Leiden. These are the tests that IMO have more diagnostic yield.
As for aviation stuff and this. I have no clue. But it sounds like you had two unprovoked thrombotic/embolic events. Likely lifelong anticoagulants are in your future.

Preach.

And find a good hematologist.

 

[Cervieres]

Preach.

And find a good hematologist.

Yes, you absolutely need a good hematologist. What city or area of the country are you in?

 

[bbchien]

1. I have had two PE attacks.

Here are my questions:

1. Are they feeding me a BS line about "the tests" being invalid when I am currently on blood thinners?

(1) No. Pradaxa interferes with the tests.

2. I don't know what "the tests" are. Are there tests that can be run while I am on blood thinners to determine the root cause? Again I'm not looking for FAA standards. I want to know the truth.

(2) Protein C protein S, Leiden Factor and a host of antibodies are relevant.

3. If in fact I do have to go off the thinners to get the tests done, how long do I need to be off them? I think if I can last 4-6 months, I can last 4-6 weeks. Doc did say I probably won't walk away from a third attack.

(3) Two weeks should do it.

.....and now for the part you don't want to hear- the estrogens are incredibly thrombogenic if you have the predisposition....sigh.