I would still love to get the genetic test done to rule out lqt 3, but noone seems to think I need it and the insurance didnt seem like they would cover it when I looked into it. Hopefully all the doctors are right and I don't have this!
My QTcs have been 447, 434, 428, 399, and 388. Then the 1st EP said he got a manually calculated value of 465. Then he put 499 on the genetic test. Dr. Rosero looked at all the EKGs and said his highest number was 440. So it is all a little confusing, but I should try and trust Dr. Rosero who is the long QT specialist. Also, he said even if I did have one 465 that was ok. The 499 we are assuming was done just so I could get the genetic test to ease my anxiety, which we are no longer doing. My QTc decreased with the stress test to 376. That is why I am terrified of having LQT3, which seems to be the worst kind. However, there is nothing else I can do. The expert cleared me so all I can do is say a little prayer when I go to bed I guess.
I was seeing an EP, who got one different value than Dr. Rosero. I am taking Cymbalta for anxiety. I thought that your QTc reading was 460 if I remember correctly. Dr. Rosero and my first EP both said that is a value not to worry about. I would love to get the genetic testing done still just to be sure, but Dr. Rosero does not think I need it and my husband said we are not doing it because it would just increase my anxiety. I keep focusing on the small details based on the reading I have done and keep thinking what if everyone is wrong and I do have it? I am certainly not ready to just pass away in my sleep which is what I am convinced will happen..... it is so terrible that an arrythmia can actually me triggered my sleep in some cases. Hang in there.
I did go to see Dr. Rosero in Rochester. He looked at all my tests and could find no indication of long qt. He measured my highest QTc at .44. He does not no where my other Dr. got the .465 from, but says even if I run between .38 and .465 that is fine. He also believes the other EP put .499 on the genetic test just so I could get it done. I still have a lot of anxiety and am scared of sleeping as I am convinced one day that I will never wake up. My anxiety brain does the "what if" even though I have been cleared by one of the best. I forgot to tell Dr. Rosero about my nightime "panic attacks" and in still wonder if that is a LQT3 symptom, although I try to rationalize and say it was just nocturnal panic attacks from starting a new med. We are right now not going through with the genetics.
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