Ttt Results ?

[Traceyf]

Hi Everyone

I had TTT done at Beth Israel In Boston 3 weeks ago. I called for results and the secretary to Dr Freeman ( who tells me every time I call that I am on the waitlist for an appointment and there is a 7 mth to 1 year wait). Told me my results were faxed to my PCP ( who admits to only having knowledge of hypo pots ).

She then proceeds to read me the final report over the phone which says "essentially normal TTT ".

I was shocked! Even though I didn't pass out ( my BP rises upon standing ) I was very symptomatic. Called my PCP who reads me the letter he received.

It says that while I had symptoms, they did not correlate with my vital signs. I had a delayed overshoot on phase IV of the valsalva manuveur. And that there is an overshoot of the sympathetic nervous system.

My PCP reads this as that I do not have dysautonomia and that I should diet and exercise!

I have no idea what any of it means, just that I feel like I am back to square one! Where do I go from here? Does it mean that I don't have ANY form of autonomic dysfunction?

I am calling tomorrow to get the actual report faxed to me along with the letter.

Help!!

[Mytwogirlsrox]

How do you get a break down of what your vitals are? My Dr went over my results with me (I was stupid and didn't get a copy) but my EP said pretty much I "have pots b/c x, y and z" honestly no one ever said dysautonomia. But anyways, I would try and get a real copy of your test and maybe take the results to a pots dr??!

[Katybug]

Just so you know, the cardiologist who wrote the report for my ttt noted it as a normal ttt even though I was extremely presyncopal and tachycardic during the test. Before I left the hospital he even told me to up my salt intake and drink lots of Gatorade. The nurses conducting the test kept calling him into the room because my HR went from 72 to 145 and stayed there for the entire 45 minutes of the test. I cross referenced tachycardia and ttt when I got home and learned that POTS existed and clearly that was what I had. On my visit to my own cardiologist a week later to get the "official " results she read me the report

I told her about the tachy and symptoms on the table and asked her to personally review the test read outs. She called me a week later and confirmed a POTS dx. I have no idea what the guy that told me to increase salt and Gatorade but "oh you don't have anything " was thinking. He obviously knew something was wrong. So I guess what I'm saying is, if you think you have POTS, don't feel at all badto ask for a second opinion on the test...but they need to review the actual read outs not just read a report someone else wrote.

[FarmerAmy]

I feel like you are getting bad medical advice. How can you have "normal" results from a TTT if you felt symptomatic during the test? You know your body and your symptoms better than anybody else. If your doctor says something that doesn't sound right to you, I would either keep pushing him or find a different doctor who seems to listen to your concerns.