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How can I get the data from my tilt table test?

picante

Senior Member
Messages
829
Location
Helena, MT USA
I ordered the results of my tilt table test from the hospital records department, and they arrived today. I had asked for all the data. They sent me two BP readings and two pulse readings. That's it!

How do I get the rest of the data?? I was lying down for 10 minutes, then vertical at 70 degrees for 20 minutes. A BP reading was taken every minute or two, I think.

There were multiple wires hooked up; I pulled 6 snaps off myself once I got home, so there at least six leads. Do they not collect data from those leads?? They described it in the report as "non-invasive hemodynamic monitoring".

Surely there is more data than "baseline" BP & HR and "Tilt at 70 degrees" BP & HR. Did they give me the lowest BP? When did it happen? Right before they ended the test?

I've seen someone here post a graph from their tilt table test. That is what I was hoping for.

For over $1,000 in deductibles & copays, I was sort of expecting something more. After all, what they gave me is data I can collect at home, easily. And it will be more representative than data gathered when I've had to fast, travel 2 hours, talk to staff, and have obvious signs of adrenaline surge.
 

Gingergrrl

Senior Member
Messages
16,171
That is very interesting @picante and I did a TTT, and other autonomic testing, in early 2016 at a very reputable clinic and they literally refused to give me the complete data/results vs. only a few of the readings. It was very bizarre and was ultimately one of the worst medical experiences that I ever had (for other reasons).

They confirmed that I had an abnormal TTT with "Significant POTS" and an abnormal QSART with lack of sweating and neuropathy to the long-branch nerves to my feet but then refused to give me the data (so I could show it to future neuros or my main doctor).

Then the grand finale, my insurance denied the whole thing, even though this clinic had told me in advance that they accepted my insurance, and it cost me a fortune. I am sorry that you are going through this, too, and I wondered from your post if it was the same place (but you live in another state and said you only traveled two hours to get there so it's not possible).
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Surely there is more data than "baseline" BP & HR and "Tilt at 70 degrees" BP & HR. Did they give me the lowest BP? When did it happen? Right before they ended the test?

I've seen someone here post a graph from their tilt table test. That is what I was hoping for.
When I asked medical records for my TTT results as first they pulled out something with minimal data. Then I told them that I wanted the doctor's copy and the doctor's report and got it (paying a small amount for copying).
 

lauluce

as long as you manage to stay alive, there's hope
Messages
591
Location
argentina
YOU NEED TO GET THE FULL RECORDS. I did a ttt and the physician's report just stated: "ttt normal". However the report contained ALL the bpm and bp values, with the corresponding times at wich they where taken. My bp was normal trough the whole test... the bpm however, got raised from 90 bpm to 156 bpm in less than 10 minutes being upward! this more than fullfiled the criteria for POTS: "a 30 bpm increase after 10 minutes upward or reaching a higher than 120bpm after 10 minutes". I turned out that after 10 minutes my bpm where raised by 76 points, more than double that what is required for a POTS diagnostic. While being upward, Please get those values! it´s your right, you payed for it

https://drive.google.com/file/d/0B4xZkI0tTFX3dEtwVHVRR0RUN2M/edit

"Postural tachycardia syndrome refers to an exaggerated increase in heart rate with
standing. A healthy individual usually has a slight increase in heart rate—by about 10-15 beats
per minute—within the first 10 minutes of standing. POTS is considered present if the heart rate
increases by 30 beats per minute, or if it reaches 120 beats per minute or higher over the first 10
minutes of standing, accompanied by orthostatic symptoms. POTS is an abnormality in the
regulation of heart rate; the heart itself is usually normal. Some patients with POTS in the first
10 minutes of upright standing or tilt testing will go on to develop NMH if the test is continued;
the two conditions often are found together, and they are not mutually exclusive diagnoses."