5 Minute Ttt At Mayo

[Clavicle]

Hello All,

I need some advice. I took off work to go to the Mayo Clinic at Jacksonville Fl for a POTs diagnosis.

I should've paid more attention, but I mean, it's Mayo clinic! Anyways, my blood pressure was elevated for me..due to stress (i drank a lot of caffeine the day before too) and I was walking around quite a bit.. I could tell it was elevated because I felt a lot more *alert* than usual.

They administered the TTT but it was only for 5 minutes. So 2 days later, after I'm already home, they call and say the test should've been administered for 10 minutes. My hr only went from 76 to 108 which apparently is normal. I cannot take off work again so I will not be able to go back

QUESTIONS:

Would a 10 minute TTT make a big difference?

Would it be okay to get the test locally by a cardiologist or should I push to find a neuro ttt? Does anyone know of a good dr in the Atlanta area?

Do you think Mayo will charge me if they messed up on the test? I don't particularly care because I'm sure insurance will cover it, but I'm curious

Thanks!!

[Clavicle]

i also drank water an hr or 2 before the test

[sue1234]

Do you remember why they quit? Your heart rate went up 32 point, and I thought their definition was going up 30 points in 10 minutes(or under?). If they redo it for free and it's not too long of a drive, maybe go back. Otherwise, it wouldn't hurt to go local. My TTT done at Mayo-Jax, according to them, showed I didn't have POTS. A TTT done a year before locally through a cardiologist lasted 45 minutes and the diagnosis was hyperPOTS.

I never understood that 10 minute thing Mayo goes by. How is that normal if I have to spend my life living it in 11-minute spurts then sit for an hour to recuperate? I say it like that because I may be "normal" within that 10 minute frame, but go over that 30 bpm at minute 11 or 12. No matter what, a heart rate of 29 bpm makes me feel just as bad.

[Chaos]

I don't know that it's specific to Mayo that they do the 10 min TTT. Think it may be more the difference between a Neuro TTT and a cardiac TTT. When I was at Cleveland and had one done in the cardiac clinic it was 45 minutes. The neuro wanted to do one as well but his version was 10 minutes. So I think they are looking at different things in that time frame.

I know at Mayo when I had the 10 minute version, I was hooked up to a beat-to-beat monitor which was checking BP/HR constantly and not just every few minutes like they did with the cardiac TTT. Based on the tracing they got from that, the doc was able to use that info to further confirm his thinking about what subtype of POTS I had.

[Bigskyfam]

I had two diff tilt tables the first the doc said had inconsistancies so they repeated the second no charge. I didn't pass the second one . Diagnosed with pots

[Christy_D]

My son had one done in Cleveland at Case Western University Hospital and it was 45 minutes and tracked minute by minute, and that is where he got his official POTS diagnosis. He had another TTT done 2 years later at the Mayo in MN and it was only 10 minutes and they manually tracked bp/hr at the beginning, and 5 minute and 10 minute mark. They pronounced he no longer had POTS based on that 10 minute TTT(FYI-he still had POTS). So, I much prefer the longer version that tracks minute by minute.

My daughter also had a TTT done her neurologists office which was 45 minutes and tracked minute by minute.

[Clavicle]

Thanks everyone. I feel better knowing that the 5 minute testing is uncommon and that many of you had to repeat the test! I had no idea there was so much variation in testing, jeeze

Do you remember why they quit? Your heart rate went up 32 point, and I thought their definition was going up 30 points in 10 minutes(or under?).

yes 32 beats at the 5 minute mark (who knows what it would've been at 6..7..etc) then they lowered me back down, saying it was over. there was no reason to quit, it's like they didn't administer the test properly. the report says "heart rate response was appropriate". what?

[Clavicle]

I was hooked up to a beat-to-beat monitor which was checking BP/HR constantly and not just every few minutes like they did with the cardiac TTT. Based on the tracing they got from that, the doc was able to use that info to further confirm his thinking about what subtype of POTS I had.

this sounds ideal

i cant imagine just testing at the start, 5, then 10 minute mark. that's goofy

[Clavicle]

ANOTHER QUESTION while im at it,

my hand started cramping up really badly from the BP cuff going on and off, is that normal? it's happened at home too...

[kitt]

The reason Mayo does two TTT different tests is specific.

(They know what they're doing btw.)

The ten minute TTT test is specific to pots. The cardio TTT is not.

A person can fail the 10 minute TTT and be correctly dx'ed with pots. A longer cardio TTT is looking for other issues. In my case I failed the ten minute autonomic TTT at Mayo MN, so have pots.

With the longer cardio TTT my pulse dropped to 35 at 13 minutes and my heart stopped for 7.5 seconds. I was diagnosed with a secondary form of dysautonomia known as NCS, neurocardiogenic syncope.

In a THIRD test Mayo measures catecholimes. Mine are extremely high, over 2500 so I'm also hyperadrenergic.

So my heart rate goes UP during the first ten minutes of standing and then starts to drop...Fast.

If you pass a 10 minute TTT, Mayo does not dx you with pots. They consider it an an arrhyrthmia. http://www.nhlbi.nih.gov/health/health-topics/topics/arr/

Don't shoot the messenger. I'm just saying these are part of their parameters of how they dx dsyautonomia, not just pots.

Good luck,

K

[Clavicle]

Right but who has had a FIVE MINUTE TTT?

[Becia]

My first TTT (which I'm guessing was a cardio one) only lasted 30 seconds. Heart went 70 to 170 in that short amount of time, I nearly passed out, and the cardiologist called done. My last ttt was an autonomic one, and it was 10 minutes long. Still just as tortuous on me, but i managed the entire time, although really symptomatic and my hr topped out at 163 while my bp was trying to bottom out at the end.

[sue1234]

Kitt, thanks for the passing on of Mayo's info. I could have an argument against their criteria though(not against you, Kitt!).

1. We all have days where we are somewhat better and days that are just horrible. What if they tested on our somewhat better days?

2. No matter what their criteria, this is what happens to me during any TTT. The timeline will be different on any given day:

They stand me up, I feel slightly lightheaded then it goes away. As the minutes go on, my hands and feet(especially) feel like I'm beginning to pool.

At some point, my heart then starts to pound. I start feeling uncomfortable in the head. The feet feel itchy and "full".

This scenario happens the same, no matter if it is a 10 minute or a 40 minute TTT. The 10 minute TTT my heart rate stayed at around 28 bpm above baseline,

and my b/p would dip then go up, back and forth. Mayo's notes mention how my feet turned "red and blue, mostly cyanotic", within minutes. On the 40 minute TTT, I forgot and can't find my paper, but my heart rate went around 35 bpm, but I pooled

so much that my adrenaline kicked in over-drive. My b/p went up to around 175/110 while my heart rate kept racing. I can see where that new theory of

autoantibodies could fit here, being that pooling happens due to vessels not constricting normal. Then the adrenaline system kicks in way to much to keep

trying to constrict until it finally has enough to work, and then BAM!

So, my heart was thoroughly tested by an EP and I have no heart issues. Meaning, my heart has no electrical or conductivity issues that cause my blood pressure to become high and erratic, along with an elevated heart rate. My symptoms are POTS related, whether Mayo's 10 minute TTT catches it or not.

[Clavicle]

that's crazy about your feet! i think i have somehting much milder in my arms

my feet were freezing before the test. they had to spend a few minutes warming them up first.

[kitt]

Btw, on the 90 minute cardio TTT at Mayo MN they are WAITING for you to faint/pass out. If you don't pass out/faint in the first 60 minutes, they inject you with ISO, (isoproterenol) giving you an additional 'opportunity' to faint. I fainted at 13 minutes, my heart stopped beating for 7.5 seconds etc...So I didn't have to endure that.

(Yes, they are very, very well trained in CPR.)

Also, it is a fact that 7 out of 10 patients who go to Mayo who have been dx'ed with pots are not dx'ed with pots by Mayo.

As for the 10 minute autonomic TTT at Mayo, it is not only the heart rate that must exceed 30 beats in that 10 minute window, there are very specific BP requirements as well. I don't have my paperwork in front of me but I believe it's the systolic bp measurement that must decrease by a very big swing in that time frame as well. (Forgive me if I messed up the BP part, but it's a HUGE part of the Mayo MN 10 minute TTT.) An increase of 30 heartbeats alone doesn't cut it. Have to have the BP change as well.)

As for the 5 minute TTT? Here's something from Dysautonomia International about Pots, TTT's and 2, 5 and 10 minute intervals.

http://www.dysautonomiainternational.org/page.php?ID=30

Btw, I filled out a form from Vandy and they only wanted heart rate and BP measurements at one, two and three minutes. Go figure.

Oh, and Sue, as for 'best day' and TTT.... Mayo gives instructions about what not to eat or drink 24 hours prior, but obviously don't take in a lot of salt, caffeine etc...They require you to be off all medications for a great deal of time beforehand.

As for feet turning 'red and blue' that's not uncommon on a TTT, or in real life. Unfortunately.

At Mayo MN they also have an extensive 'Pots clinic' and do extensive testing for small fiber neuropathy. (This is only available at the MN Mayo) It's all good information.

Best,

K

[Clavicle]

. Mayo gives instructions about what not to eat or drink 24 hours prior, but obviously don't take in a lot of salt, caffeine etc...They require you to be off all medications for a great deal of time beforehand.

fwiw they do not do this in jacksonville

[Clavicle]

what other tests would they do for small fiber other than qsart? does anyone here have small fiber but passed the qsart?

[Christy_D]

My daughter was diagnosed with small fiber neuropathy from a skin biopsy on her thigh and near her ankle.

[Becia]

I had abnormal readings on my qsart, but my doctor said based on my tst, they are considering me negative for neuropathy, which is weird, but whatever. They are saying for the tst I didn't stay in the box long enough, but I was told day of the test if I can last 30 minutes, the test will be complete, and I lasted 31 before needing to be removed because I was very nauseated and shaking.

All I know is I'm very sensitive to touch, and sometimes I can't even handle wearing clothes because it just hurts.

[Freaked]

5, or even 10 mins is way too short. I had a 40 minute TTT, and good thing too cos at 20 minutes my BP dropped and I almost passed out, so they wouldn't have caught my vasovagal syncope if it was only 10 mins. I say go back, though 32bpm should be enough for a POTS diagnosis anyway I thought.

[kitt]

On 4/5/2014 at 5:19 PM, clavicle said:

what other tests would they do for small fiber other than qsart? does anyone here have small fiber but passed the qsart?

K

[Clavicle]

thanks all! another quick question, are you charged for each TTT? it sounds like its common to get multiple tests and i have to pay 300 dollars each time AND my deductible is high......if i am going to have to pay this much, the ttt better be 10 minutes!!

5, or even 10 mins is way too short. I had a 40 minute TTT, and good thing too cos at 20 minutes my BP dropped and I almost passed out, so they wouldn't have caught my vasovagal syncope if it was only 10 mins. I say go back, though 32bpm should be enough for a POTS diagnosis anyway I thought.

yeah see thinking about this drives me crazy. my heart rate was going up right as the ended the test? okay!

[kayjay]

I'm just putting it out there- this really doesn't sound right.

I've been to mayo mn and mayo jacksonville. Kitt is absolute right about what happens in Rochester. Jacksonville is a smaller Mayo but Mayo nonetheless. I've been in both autonomic labs. It's almost disorienting because they are so similar. Even the information desks look the same.

What doctor (s) did you see in Jacksonville?

[sue1234]

For me, my Mayo Jax endocrinologist referred me for the autonomic reflex screen. The doctor associated with the autonomic lab report is a Dr. Eidelman, even though I never saw him, just the tech that did all the testing.

They had told me not to eat for 2 hours before the testing, but I reminded them that I was at Mayo for hypoglycemia, so I could NOT skip meals/snacks. I remember going ahead and skipping my snack near the test time, but I did take 2 glucose tablets before the test to make sure my glucose was up in the normal range.

They had never mentioned salt, fluids, etc.

[bunny]

5 minutes seems way too short to me. I passed out around 6-7 minutes, and I was the fastest my cardiologist's office had ever had. BP/pulse spiked around 4 mins then precipitously dropped and I went into asystole. Their protocol was the typical 40 mins then iso for another 15-20 minutes if I didn't go out in the first round.