Tilt Test On Beta Blockers?

[Birdlady]

I am scheduled to go to the Cleveland Clinic in the beginning of June for more diagnostic testing. I've already had a TTT done with confirmed POTS, but I want to get some more comprehensive testing done. I got the packet in the mail and was confused about whether or not I needed to be on beta blockers. I currently take 25mg of Metoprolol ER. Well I called today to verify what needed to be done and I was told that I need to stay on the beta blockers for the test.

Does this sound right? I asked if this would affect any of the testing and I was told no. That makes zero sense because the beta blockers have been extremely helpful for me, so I'm less symptomatic. Obviously it is going to affect the results of the tilt test and catecholamine tests, right?

Am I missing something? Is this normal?

Thank you.

[cardiactec]

maybe they want to see how well managed you are on your current medication regimen ? another issue could be (I know this was the case with my trip out to mayo clinic - MN from Maine) that they could not "consent" to giving permission to go off meds until I was actually physically there (it's a liability thing) - they told me to ask my local physician/cardiologist about stopping meds before going out there....

Mayo Clinic had me stay on my metoprolol (150 mg's) even after I got out there, but i just figured it was because it didn't make a difference (in my situation) with or without meds - the numbers unfortunately for HR are still the same.

Hmmm, interesting. Did you ask them why they wanted you to remain on meds?

[Birdlady]

I'm not really sure why they want me on the meds. I should probably call back and ask.

I am a new patient, so I thought they'd want to see me with a clean slate. She told me on the phone not to drink coffee because they will be testing catecholamine levels. Uh, I know that beta blockers affect those levels, so I just don't understand at all.

[the4richards]

My docs tested me while I was on my bb. Although my hr was very well managed, I still failed the ttt. They also did the 24 hr urine for catecholamine levels. I didn't know bb could affect the test!

[MomtoGiuliana]

I thought bb's simply blocked the effect rather than the manufacture of catecholamines.

[Sophia3]

Well I am no doctor and have NO clue your dosage or WHY you are on meds..but I would be calling my doc and weaning myself OFF the bbs NOW to clear them out a couple of days before the TTT.

Why? because it WILL EFFECT the TTT readings! You said it's a "diagnostic test", correct?

TTT are usually only used WITH MEDS in research or to see if things have improved on said medications.

You as a patient have the power to make the choice to go off the med before the test as long as your doctor agrees and it's not LIFE THREATENING for you to do so.

Otherwise your TTT is a big waste of money in my book. Heck if Coffee can affect the test, a bb that blocks the anxiety adrenalin will as well.

(Performers OFTEN take bb before going onstage to CURB the excess cats/that cause adrenalin spikes)

Again, I'm not telling YOU what to do but what I would do.

The above post is meant for information purposes only. It is not meant to diagnose, treat or cure a medical problem.

Good luck.

p.s. Sometimes we have to be OUR OWN pt advocate and that can mean going against what doctors tell us. But I've had 18 years of practice at that so . . .

[Birdlady]

Sophia I completely hear what you are saying! Yes this is for diagnostic purposes and not a follow up for how I'm doing. I told the office that I wanted more comprehensive testing to determine the exact type of POTS I have. Honestly I don't even know why they want to do another TTT. Mine is pretty conclusive as you can see in this thread I made a few weeks ago. They used nitro at the end of my TTT and the receptionist was saying that it was worthless and that I'd need another one, but I tried to explain to her that I had already tested positive for POTS even before the nitro was administered.

All of this just doesn't seem right to me and I'm actually really put off by it now. Money is tight right now, so even the mere thought that this could all be for nothing is not sitting well with me. I was so caught off guard by the receptionist's answer that I didn't even ask why they wanted to test me on them in the first place! haha I think I'm going to be calling back tomorrow to ask more questions. My local doctor has been out for a few weeks, but I may even put in a call to him to see what he thinks about this.

Even IF BB's only affect the effects of catecholamines (rather than the output which makes sense and I don't know why I didn't think about that beforehand LOL) then this TTT will likely be a waste of my time/money and physical and emotional energy. Maybe I will still fail the test though? I really have no idea what my body will decide to do. Some days I feel great and others I feel terrible... With adrenal insufficiency, I also have the risk of slipping into crisis with these tests and I have to stress dose. They don't even know I have this as no one asked about my medical history or current meds.

Thank you everyone for the input. Now I have to decide where to go from here.

[Elegiamore]

Dana,

The same thing happened to me at Cleveland Clinic. One time they said to stop my meds and the result was that I almost didn't make it through the TTT; they were screaming "where are the paddles" the entire time because the tilt without meds sent my bp to the ceiling.

The next visit they simply didn't answer the question about BBs. One person said to stay on it and another said to quit. They are VERY out of it.

Also, Dana, they ALWAYS give you tilt even when you are showing up for something else. I went back because I had such severe salt loss issues going on. And they insisted on giving me a tilt and then admitted that it was of no help regarding salt loss.

They claimed I had lung cancer-caused salt loss and wasted LOTS of dough on silly testing. When in fact, I was missing vassopressin in my body from CFS/POTS/Whateverthehelliswrong and was a simple urine test. I almost died under the care of their Syncope Department from neglecting my salt loss.

I think they WANT OUR MONEY in the Syncope Department. Period.

CALL THEM BACK. And don't switch to Mayo; they were even worse!

Good luck,

Elegiamore

[Birdlady]

The only reason I made an appointment with them was because I thought they were supposed to be good doctors? haha I had even done a search on this forum and most of the posts I found were all very positive. Maybe things have changed?

I really see no need to do another TTT, but I guess I have no choice at this rate. I don't do that bad during the tilt as long as I stress dose my hydrocortisone, but it's just uncomfortable. Maybe it's time to go back to the drawing board and force my local doctor to test the catecholamines supine and upright. That's really all I care about. Even though he's a "POTS expert" he is really out of it when it comes to testing.

I also have salt-wasting, so that part of your post really interests me. I also have a diabetes insipidus diagnosis, but have found that I go through cycles where I don't need the meds. We have a lot in common I guess. Have you ever been tested for adrenal problems? Low aldosterone usually causes salt wasting, which is remedied with florinef. My aldosterone levels are pathetic, yet florinef gives me massive migraines. I can't win!

Thank you for your post. It makes me wonder if this is even worth the hassle! Thankfully I only live about 2 hours from Cleveland.

[Brye]

My last TTT was with my beta blocker. I had perfectly normal results! No change in treatment necessary. Maybe that's what their looking at, how effective your meds are! They already have a documented abnormal TTT right?

Brye

[Birdlady]

The abnormal TTT was not done at Cleveland Clinic and when I talked to the secretary on the phone she said that mine was invalid because nitroglycerin was used during a portion of the test. Gotta love it when one doctor's office tells you something you did was useless! I thought that they'd want to see me without the BB to get a real baseline. The beta blockers helped tremendously in the winter, but now that it's hot outside, I'm back to square one--rapid heart rate, shortness of breath upon standing etc All that fun potsy stuff. Maybe it doesn't matter if I stay on the BB's for this test since I am symptomatic at the moment? I dunno! My biggest fear is if I stay on the BB's I'll have one of those rare better days and they'll just send me home and say everything is good.

I didn't have a chance to call them today, so it's on my To-do list tomorrow. I think I need some more answers. I'm thinking about sending my labs/TTT results early so they have everything sooner rather than later.

[ramakentesh]

My last TTT was with my beta blocker. I had perfectly normal results! No change in treatment necessary. Maybe that's what their looking at, how effective your meds are! They already have a documented abnormal TTT right?

Undoubtedly they will be making the incorrect assumption that lack of tachycardia response due to beta blocker = an improvement of symptoms. In most cases the tachycardia is an appropriate response to reduced cerebral perfusion so the beta blocker will slow down your tachy but you will almost certainly be dizzy or even dizzier.

Therefore just because your tachy is down doesnt mean you feel any better in many cases.

[mjan]

Dana, I agree with you about your question about why you'd stay on your BB when you are having the test.

I had a TT done which was not done by an autonomic doc but still told me it was "positive" and lead to my BB.

When I was referred to the Autonomic neuro he ordered the whole autonomic testing and I had to be off my BB for 3 days I think it was.. that bothered me..but I did it. Of course I failed the TT but.. my BP did skyrocket as it always does before it drops suddenly.

Maybe you could call and ask for the doctors RN.. is that who you spoke with? Or just the scheduler??

Let us know..good luck

Jan