Could Toprol XL interfere with pheochromocytoma diagnosis?

[fearfactor]

I was tested in October 2004 for pheochromocytoma using a 24 hour urine test.  The symptoms that led to this test were tachycardia, extreme anxiety, waking in the night with tachycardia, trembling and sweating that began in August 2004.  The urine catecholamine test was negative and I was finally diagnosed with anxiety disorder.  Now, I am 30 weeks pregnant and am concerned because I periodically have spells of sweating and my heart speeds up.  I do not now nor have I ever had high blood pressure - in fact, my blood pressure is very low, often reading in the 80/50 range (90/60 is normal for me).  I have also had trouble gaining weight with this pregnancy.  The anxiety is still present.  I take 12.5 mg of Toprol XL per day (any more and my BP drops very low).  When I'm on Toprol, I don't have the waking in the night spells but when I'm off it I do (I've tried to get off once last summer and had to start taking it again).  When I had the urine test back in October 2004, I had just started Toprol XL and was taking 12.5 mg per day for about a week before the test.  I am wondering if the Toprol could have somehow skewed the results of the test and I may need to be checked for pheo again without the Toprol in my system.  I realize pregnancy causes tachycardia, and I realize that anxiety disorders are very real.  What I have never been able to figure out is why, when I am off Toprol, I have spells of waking in the night extremely afraid with my heart beating very fast, sweating and trembling.  I realize this sounds like a panic attack but I just want to be sure.  Thank you.

[CCF-M.D.-MJM]

It really sounds like you are describing panic attacks.  With blood pressures that low, a pheo is very high on my list (it isn't really on my list unless you really spike your blood pressure).

a beta blocker would not interfere with the diagnosis.  The urine test is for a very specific chemical that is not masked by beta blockers.

I think you should focus more the treatment of your panic attacks.  Recognizing a panic attack when you have one and being able to talk yourself down because you believe you are not going to die is the first and most important step!!!  It sounds like you are almost there.

Congratulations on your pregnancy!!! and thanks for posting.

[momto3girls]

Hi Fear Factor,

First of all congratulations!  I already have 3 girls and my husband is hinting around about trying for a boy (:  We'll see.

Well, after reading your post I felt like I was reading my own.  I too have lots of night-time tachy that wakes me up and night sweats.  The night sweats actually don't happen every night though.  I had a CT scan of my adrenal glands/abdomen a year ago because I too had the same symptoms and basically told my Internal doctor to test me for a pheo.  I even had flank pain in my right back.  All negative.  Still though, nobody has explained the night-time tachy or sweats to me.  

Let me ask you something, do you wake up with tachy (even after a nap) with a jittery feeling or pounding heartbeat?  I do and was curious if you've experienced it.  

Did they check your thyroid at all?  After I had my 3rd baby my body went haywire and the first thing I noticed was I dropped 15 pounds in days, lots of sweating, tachycardia and a lot of bowel movements (:  I went hyperthyroid and it was a post-partum issue apparently.  Just a thought since maybe the pregnancy is affecting your thyroid a bit.  

I too have low/normal bp.  Mine runs 110/60 but since I'm on the Atenolol (12.5mg two times a day) it's more like 90/50's.  I was on a higher dose of 25mg 2 times a day and my bp went down to 85/48 and my pulse was in the 40's!  I was like a zombie and told my cardio doctor I wanted to decrease it.  She actually wanted to increase it because I was still having runs of tachy at times.  Ya, ok, let's increase it and then I'll just be comatose all day with 3 little ones running around (:  

Well, I'm very curious what the doctor will say...we're kind of in a similar boat (:  Good luck with this pregnancy!  I personally loved being pregnant and loved having a newborn baby to hold and love (:  Best wishes to you!!

[fearfactor]

Hi - thanks for the good wishes!  We are having another girl and are thrilled - we already have a 4 year old daughter.  This is our last one so I'm trying to enjoy the pregnancy as much as I can though the speeded up heart that is natural in pregnancy scares me and I don't like the dizziness!  Plus I had to go off my anxiety meds which makes life not so fun!  :)  You asked if I ever wake up from a nap with tachy and feeling jittery - yes, I do sometimes.  Especially since I have been pregnant, I find that even if I am dozing on the couch I might be awakened with my heart beating faster or feeling like it's pounding, but my HR is only about 95 or so when this happens.  When I had the spells that caused the doctor to check me for pheo, it was much more extreme - my HR would be 140 or so.  Now, it rarely gets past 120, thank God!  When I was not pregnant this low Toprol dose dropped my HR in the 50s and it would hardly get above 100 even with exercise!  They have done thyroid testing, which is all normal.  It is just so bizarre why this would start happening - perhaps they are right and it really just is anxiety with me.  I hope that's the case.  We'll see what the doc says...

[momto3girls]

Wow, what you wrote about your jittery, tachy feeling after a nap, etc. is just like mine.  I too will wake up (either middle of the night or during a rare nap) feeling jittery and pounding and my heart rate is only in the 80-90's.  Weird.  I've been reading up on paroxsymal atrial tachycardia (pat) since its a possible issue for me.  My cardiologist says it's either pat or svt, she's not sure.  I have an appt. Thursday and I'm just so thoroughly frustrated.  I usually am very positive and don't let it get me down too much but today's been a cruddy day.  

Sorry, this is your post and I'm complaining (:  Like I said before, best wishes to you on your pregnancy.  I really would like to have another baby soon but all this heart stuff kind of scares me at times.  I truly understand about the anxiety issue.  It really can cause so much, what's the word...ANXIETY!  Try to enjoy the fact that soon before you know it you'll have another bundle of joy (:  It's such a wonderful experience and the end result makes all the discomforts of being pregnant worth it!  Good luck with everything (:

[mom4cem]

I have 3 kids,,youngest 4. I have the same symptoms. Been checked for pheo too, thyroid etc. All fine. Mine though is not limited to waking up at night with it. Usually I will awaken in the a.m. and my heart starts to race,,about 90's. Then until it is time for beta blocker I either stay in the 80's or 90's then getting up it shoots up.  I also do get periods sometimes during the day when I feel uneasy and I know something is going on. My pulse starts to get a little faster, and faster until it peaks,,used to be 140's now about 120's or 110's that is sitting, then it gradually goes down. I have had event monitor capture it and it shows sinus tachy, they actually see it go from 70 to 80, to 90, to 100 and so on.

At this point they are thinking it is neurochemical related. Somehow I shoot out adrenaline inappropriately. Sometimes the beta is great at keeping my rate down, but other times it happens anyway.

Feel good with this pregnancy and I hope it calms down afterwards.

Congratulations!

[momto3girls]

Hi Al,

Weird.  The same thing happens to me...if I'm taking a quick afternoon nap and the phone rings or my girls wake me, I feel very startled immediately and my heart feels pounding and jittery.  Hmmm, maybe it is adrenaline associated.  It's just so strange and it happens at night while I'm trying to sleep as well.  It does calm down within a minute or 2 at the most but boy it feels disturbing when it happens.  Interesting comment though about the sensitive CNS.  

So, are you feeling better I hope?  Did they determine what caused that strange brain episode?  I just feel so awful for you dealing with so much still.  Hopefully they can nail down some issues and put the pieces together for you (:  Hang in there.

Hi Mom4cem,

I too have 3 little ones and the smallest is 3.  It's just too funny to hear other people who have the same symptoms (:  So often I feel like some kind of nut case who has the strangest things happening to me physically.  My mom teases me that I'm the healthiest sick person she knows.  Comforting isn't it?  My heart rate too used to just shoot up, within a couple of beats from 90's to 180.  The first cardiologist I saw said to just ignore it.  I didn't return to his office for another appointment (:  Well, it's just so comforting to hear fellow sufferers of weird things!  I mean that nicely of course!  I'm going to look into the adrenaline issue then, like you mentioned about yourself.  Best wishes to you and enjoy your little ones!  Mine seem like they grow overnight (:

[fearfactor]

A doctor told me once that your adrenaline levels are highest in the morning (and theoretically, I guess, after sleeping at all) because your body sort of kicks in with it to help you get awake and moving.  I'm so thankful the beta blockers I take keep my rate controlled, too - I never wake up with the super fast rates when I'm taking Toprol!  Isn't it funny how heart related stuff can just ruin your whole day?  If I get up and my heart starts acting crazy, the day is pretty much shot!  :(

[momto3girls]

So so true!  If I wake up with heart issues, it's hard to push through the day and ignore.  I hate when my heart does strange things!  It's not like having a leg cramp or a headache.  We're talking about our hearts, you know, the muscular pump in our chest that keeps us alive?  LOL!  Yup, it's hard to face a day that starts out crappy, heart-wise (:  Thanks for the info. about the adrenaline...makes sense.  Maybe it's as simple as that, adrenaline sensitivity.  Take care!

[momto3girls]

Hey Al,

I'm so sorry to hear you're still having lingering issues.  Although I am happy to hear about your heart (:  I guess that's a bright spot then, huh?  

Boy I hope you have good insurance (:  They must be running lots of tests.  So they're still debating MS?  Did they find lesions on your spine/brain then?  Man, I hope you catch a break from all this soon.  For what it's worth, my short term memory is not what it used to be either, although mine is due to 3 little kids!

That's interesting about your EF.  My doctors always told me not to put too much stock in a different number on different echo's since it is, like you said, an estimate.  I freaked a while back because one echo said 65 and then another 55.  I bet yours is something like that then.  Good luck comparing all your echos.  That's a smart move.  I pulled all mine and made a giant record of my health history to take from doctor to doctor.  It was very interesting to compare the echo's together.  I felt like some kind of health detective, looking for clues (:

Well, I will keep you in my thoughts and prayers.  Try to hang in there even will all of this going on.  I truly wish you the best of luck with this.  I think it's great how informed you are and in control of your own health.  It's humbling to hear others who have health issues and remain so positive like yourself.  As a side note, thanks for all your insight into my own problems recently (:  You're a great resource for this forum!  Take care!

[momto3girls]

Hi Al,

I hope you can sort out your positve ekg stress test findings.  Good luck with all of this.  Great news about the negative MRI and MS.  I sure hope that tumor is only a cyst too.  Have a great 4th of July!  Best wishes to you (:

BTW, I'm being sent to an EP doctor to try and figure out my rhythm problem.  My current cardiologist thinks either svt or pat.  She's not sure since my heart will jump up in 2 beats from like 80 to 140's.  The problem is that I'm so symptomatic when it happens.  So my question to you, if you don't mind, is what can I expect at the EP?  I assume you've been with all the heart catherizations you've had to have unfortunately(:  Thanks so much and don't feel like you have to answer my question if you don't want to (:

[sage009]

Hello,

I just wanted to add a quick comment, no offense to anyone in the medical field but I think some doctors are too quick to give out an anxiety diagnosis.  I used to wake up out of a sound sleep feeling like my heart was either going to stop or beat right out of my chest. I dont know about you but Im not that talented to have an anxiety attack when im completely out cold. I also have had tachs and long pauses while im awake and found a doctor that explained that some people have a tiny extra beat thats almost undetectable but can reek havoc on your health. I take toprol XL and have not had the problem since.
Enjoy your little one!

[kbrock]

The symptoms so many of you are describing sound like an arrhythmia called 'Inappropriate Sinus Tachycardia'.

IST  is basically a hypersensitivity of the heart to adrenaline. This can explain being easily startled and hypersensitive to sudden sounds that cause the 'fight or flight' reaction by producing adrenaline, which for some unknown reason causes the heart rate to rapidly increase.

Along with rapid heart rate with minimal exertion patient often has resting heart rate above 100. Also can include exercise intolerance, shortness of breath and profuse sweating with minimal exertion. Fatigue and difficulty sleeping are also symptoms.

Having your heart beat so rapidly can definitely cause anxiety and a panicky feeling. When the heart rate is super fast there is a generalized nervous feeling...sort of like you’re about to come out of your skin! When you don't know why this is happening to your body and your Dr brushes you off the anxiety is heightened.  

Panic attacks tend to originate from an emotional/mental state and then symptoms follow. With Inappropriate Sinus Tachycardia the symptoms are a physiological  reaction to adrenaline, not emotional distress. Patients are very often diagnosed with panic attacks or anxiety disorder because the symptoms increase with stress and emotional upset; however, symptoms are disproportionate to level of emotional distress.  IST causes the same physical symptoms associated with panic attack but does not originate from an emotional place. That’s a very important distinction!

IST  is often misdiagnosed by GP’s and even Cardiologists. Because this is a problem with the electrical system of the heart an Electrophysiologist is your best bet for an accurate diagnosis and treatment. If medication, beta blocker or calcium channel blocker, does not control heart rate a cardiac ablation is often necessary. University medical centers are great for dealing with EP issues.

Having a name for what had been happening to me was a huge relief!  I could read about it and learn I wasn’t alone in suffering or in taking years to achieve an accurate diagnosis. Good luck to you all and I hope this is helpful.


Great site for IST info and support
http://www.geocities.com/inappropriatesinustachy/whatisIST2.html

article on identifying IST from Nursing Journal
http://www.findarticles.com/p/articles/mi_qa3689/is_200107/ai_n8979994