Went Through Mayo Testing

[icesktr189]

I did the autonomic panel on Friday. The TTT was very diffeent frim my last one. I had a resting hr in the 60s and the highest it went was 110. Im not used to seeing it that low however. My bp actually shot up to 145/90 when at rest it was 117/70. After 5 mins it leveled out to 120/90. I felt dizzy and kind of nauseous but nothing like the last cardiac TTT i had done before. Last time I dropped to 60/30 with an hr of 190 within 7 mins.

When I did the Mayo testing, I was having really bad adrenaline problems, such as the burning skin, dumping fluids, and anxious feelings. Not sure if that is why this test was so different? Last week when I took my hr at home I was at 164 from just doing the dishes, so how come it didnt shoot up on the test?

[sarahm]

Why? If I had a dollar for every time I wondered that.... I do think it is totally normal to have good days and bad days though. I have done four TTT's. My max hr was approximately 150s, 110s, 130s, and 130s. I wouldn't worry about it, if fact you should be happy it wasn't so high. 110 is still not normal so Im sure they got some good info from the testing.

[sue1234]

Dani, when you say the "panel", do you mean the TTT and other tests? Or, do you mean the dys. bloodwork panel?

When I had my 10 minute TTT at the Mayo, my numbers were not horribly bad at all, like my other TTTs had previously been or even how bad I can get at home. I don't know why it was not similar to the others. They were almost to the point of telling me that I might have gotten over my POTS---ummm, no, I still have the heart racing when standing at home.

[icesktr189]

Yes I did the TTT and 3 others. I think it was because I had so much adrenaline that it shot my bp way up. I am just hoping they dont come back and say I am fine now because im still housebound and worried I wont get treatment.

However, they said they dont just go off the TTT but also the breathing tests and the sweat. I was just shocked because I get worse readings and symptoms from doing laundry than I did in that test.

[icesktr189]

Also my resting hr was around 60 so going up to 110 should still be enough evidence? My previous Ttt was a resting hr of 80 up to 190 and funny thing was, I was actually doing much better than then I am now.

[Steph555]

Dani,

Were you tested at Mayo Rochester? I was there a couple of months ago. Like you, I did not respond on the TTT the way I did on my last one...I didn't feel well during it, but I didn't feel like I was going to die and my blood pressure didn't bottom out like it did the last time.

My heart rate did go up over 30 bpm and I had a huge increase in my standing norepinphrine. From what I have read, I should have been diagnosed with hyperadrenergic POTS, but Mayo said that I have "Orthastatic Intolerance" and a "hyperadrenergic state." Since my sweat test and autonomic tests came back "essentially normal" they wouldn't give me the POTS diagnosis.

[sue1234]

Steph, they ran the norepi level on you during the TTT?? I had the TTT done at Mayo-Jax, and they did NOT do the norepi level on me during it.

[icesktr189]

I was tested at the Mayo Clinic in Scottsdale, Arizona, seeing Dr. Goodman. I know for sure I was having severe adrenaline issues that day. Mine are in cycles...2 weeks before my period, the arenaline issues start up and i get high bp readings when standing. The weeks after my period, i have no adrenaline, and my bp bottoms out with sycope episodes, ect.

[sisblostg]

I was tested by Dr Goddman in Scottsdale as well. I had a regular 10 minute TTT with the QSART test and the norepherine 10 minute lying down standing up test. I "failed" the TTT but it was the norepherine test that had the wow results for me. They had me lay down in a quiet room for 30 minutes, then took by BP, pulse and blood and then I stood up for 10 minutes and they did the same. I didn't even think my adernaline issues were that bad that day and they went from under 200 to near 2000 just by standing. I had a speech evaluation the same day which said I had a bad starle reflex which made my aderaline go nuts, but they did not have a quick way to draw blood. I would have loved to know what the levels were.

My dx had OI, Hyperandregic state, and POTS in it.

[Steph555]

Sue, they didn't test my levels during the TTT. I had a separate appointment with endocrinology (I think it was the day before my TTT) where they drew the norepi levels. They put in a IV access, had me lay down for a while, did a blood draw and then had me just stand up and walk around for 10 minutes and then drew blood again. My supine norepi level was 749 and my upright was 1461. While I was there, I didn't really get the significance of this and the doctor didn't really address it much. While I was there I also hadn't received a copy of my TTT result yet, so I didn't know that my heart rate went from 69 bpm to 118 bpm. I would have pushed harder for an explanation of what that isn't hyperadrenergic POTS if I had known those things at the time.

[momdi]

Dani,

I remember Dr. Goodman saying that even if the HR comes down, very often the other POTS symptoms will still not improve. So, HR is not definitive. As we all know, HR is just one manifestation of the whole disordered mess that is POTS - it's just the one that is measurable and that we look at.

Any change in meds by Goodman? He tried an SSRI for Michael, but couldn't decide if he was better or worse for it, so that's stopped for now. Michael sees him next month. Tenormin and Clonidine is all atm.

Dianne