Fascinating tangential report from my doctor

[Ginevra]

When I met with my oncolgist, he went over things in my medical report and said, “I want to talk about this Protein S Deficiency...” This has been part of my medical profile since 2004, when I had an extensive blood profile completed after losing a baby due to placental abruption. This doctor said he was originally trained in hematology and he would like to investigate this if I am willing. (It has no relationship to my cancer diagnosis, but he wanted to discover it in the interest of, I guess, optimal whole-patient care.) 

He just called me about a half hour ago. I do NOT have Protein S Deficiency! Guys, this is wonderful! He told me in the office, “I always like to follow up on things like this because it is not good for you to go through the rest of your life with this incorrect information in your medical file.” He said that every time he has investigated these rare blood disorders, they are false. He has literally not yet seen the patient who truly does have these blood clotting disorders they believe they have - and it is often pregnancy complications that create the diagnosis in the first place. (BTW, he did initially want to read the original lab report but they were too long ago; the lab purges files at ten years.) 

So ? for a thorough doctor! But also, ? for Lovenox shots throughout my last pregnancy! (Also what the insurance company might say if they knew they paid $10,000 for unnecessary shots. ?) 

[sassenach]

He sounds like a keeper. 

[maize]

Yay for thorough doctors!

[Scarlett]

That is amazing.  My husband who has had 3 PEs was tested for factor 5. It came up negative.  His mom is positive which increases his chances of being positive....and one would think with 3 PEs he would also be positive.  This last week one of his siblings suggested that maybe they missed it when they tested him for it.  Not sure it matters since he has to be on blood thinners from now on....but is a thing that makes one go hmmm.

[Rachel]

It sounds like you have a great doctor. 

[PrincessMommy]

wow... what a great doctor

[Catwoman]

 I’m so glad to hear that your doctor is so thorough. You’re going through a very stressful time right now, and knowing that your doctor is someone who is not only highly skilled, but who is also so interested in your overall health is so reassuring! I’m sure it’s really building your confidence in him.

[Guest]

1 minute ago, Catwoman said:

 I’m so glad to hear that your doctor is so thorough. You’re going through a very stressful time right now, and knowing that your doctor is someone who is not only highly skilled, but who is also so interested in your overall health is so reassuring! I’m sure it’s really building your confidence in him.

Yup. It truly is. Each person on my medical team has been absolutely top notch, from the surgical oncologist right down to the scheduling administrators. The nurse who assisted me wednesday at the lab was totally incredible - he escorted me to the phlebotomist because part of the blood draw was for the genetics while part was for this hemotology study and he wanted to make sure each tube went to the right place. 

Assuming we kick some cancer butt, when this treatment is over, I am going to review/promote/prop this medical team all over the place. 

[kbutton]

15 hours ago, Quill said:

He just called me about a half hour ago. I do NOT have Protein S Deficiency! Guys, this is wonderful! He told me in the office, “I always like to follow up on things like this because it is not good for you to go through the rest of your life with this incorrect information in your medical file.” He said that every time he has investigated these rare blood disorders, they are false. He has literally not yet seen the patient who truly does have these blood clotting disorders they believe they have - and it is often pregnancy complications that create the diagnosis in the first place. (BTW, he did initially want to read the original lab report but they were too long ago; the lab purges files at ten years.) 

I am glad you are getting excellent care. My dad is going to be getting some clotting disorder testing, and this makes me nervous because we do need Real Answers, not Fake Answers. Does your new doctor have an explanation for why testing shows positive, but someone doesn't have a disorder? 

I hope all your future appointments bring confidence and clarity about your care as much as this appointment did. Good luck!

[JoJosMom]

I don't know about that particular issue, Quill, but for the clotting disorder that I have, diagnosis requires multiple positives over specific time periods. Because, yes, miscarriage of a pregnancy itself induces weird blood reactions. With respect to my issue, however: One negative result does not mean that the condition has disappeared. The condition itself is transient, and diagnosis rests on its appearance on multiple occasions in the absence of any legitimately triggering event. So I guess my only point is a general one: If one has been diagnosed with a clotting disorder, it is probably best to monitor the condition over time to ensure accurate diagnosis and treatment. Because strokes really, really s*ck.

And I'm glad that you've got yourself a bulldog for a physician, Quill; that's fabulous. I don't come here much anymore, aside from the occasional passes through the high school and college boards. I heard of your bad news, though, and have been praying for you. <hugs>

[Guest]

2 hours ago, kbutton said:

I am glad you are getting excellent care. My dad is going to be getting some clotting disorder testing, and this makes me nervous because we do need Real Answers, not Fake Answers. Does your new doctor have an explanation for why testing shows positive, but someone doesn't have a disorder? 

I hope all your future appointments bring confidence and clarity about your care as much as this appointment did. Good luck!

My understanding is this: diagnosis is determined through several profiles. So it’s a range of numbers on several measures which require interpretation. My hunch is this: I was tested for this during a pregnancy that followed the worst of outcomes, so the doctor(s) were pre-disposed to find *something* to address. Maybe one of those number ranges was close enough to the “poor functioning” side that they thought the most pro-active thing would be to do the blood thinners and call it a clotting disorder to hedge bets. KWIM? Many medical decisions are based on how conservitive vs. how assertive the doctor(s) believe they must be. 

Possibly, too, the testing is more accurate now than it was in 2004. Or this doctor is simply more knowledgeable. 

[kbutton]

12 minutes ago, Quill said:

My understanding is this: diagnosis is determined through several profiles. So it’s a range of numbers on several measures which require interpretation. My hunch is this: I was tested for this during a pregnancy that followed the worst of outcomes, so the doctor(s) were pre-disposed to find *something* to address. Maybe one of those number ranges was close enough to the “poor functioning” side that they thought the most pro-active thing would be to do the blood thinners and call it a clotting disorder to hedge bets. KWIM? Many medical decisions are based on how conservitive vs. how assertive the doctor(s) believe they must be. 

Possibly, too, the testing is more accurate now than it was in 2004. Or this doctor is simply more knowledgeable. 

That makes some sense--I thought most of the inherited coagulation problems were genetic, and, as such, were tested by more cut and dry standards. Interesting! 

And yes, I can see how adverse outcomes lead to treating just in case or a "probable" vs. "certain" diagnosis (and times when that is probably good!). There have been a lot of changes in testing for disorders in the last few years as genetic information increases. It's redefining a lot of clinical diagnostic criteria (in contrast to explicitly testable diagnoses).