Frustrated - no answers from tests

[fallingapart40]

Have any of you had a problem getting a diagnosis? So far I have had 4 ekg's that show abnormal T waves, a nuclear stress test that I hit target rate 2 minutes into and then took 4 hours to return to below tach heart rate, an echocardiogram and complete blood workup that came back fine. So far I have no answers to the sudden onset of tacycardia (120-150 bpm) that is present any time I do not take atenolol.  I hate the sluggishness for hours after I take it and the lightheadedness if I move quickly. Had one nurse say it might be PSVT but could not offer any other information. Any ideas?

[GreatFisher1972]

I have had problems with psvt since 1994 while in military service, they first occurred after i had been running and my heart rate got up to over 200 bpm, i got out of service in 1998 because i couldnt pass physical readiness test do to my heart rate would get too fast, i have had 3 episodes since getting out where heart rate got over 200 bpm, my heart rate gets over 150 bpm several times every day, i have had several ekg's done and ecg and had holter monitor and event monitor with no results, i have failed 2 treadmill stress tests not lasting more than 3 minutes on either one, i recently had thallium stress test where they found small blockage on upeer part of heart, i have taken metatoporal and diltiazem with no change in heart rate symptoms, the last cardiologist i saw said that my heart rate going up ws in my head and that i needed to see a shrink, does anyone have any suggestions what i need to do.

[RNRita]

Hi again.  I think you need a cardiologist that is willing to listen and do more tests.  I noticed that you said your doc told you you had abnormal T waves.  I know from the cardiac unit that I used to work on that there is something to it, but you have to look at the rest of the EKG and you would have to know what else is going on.  Read this:

T wave abnormalities can provide added evidence to support clinical diagnosis. Except for hyperkalemia, T wave abnormality alone is not diagnostic of any particular condition. The T wave must be considered along with QRS and ST segment abnormalities. T waves will usually be abnormal in ventricular hypertrophy, left bundle branch block, chronic pericarditis, and in electrolyte abnormality.

Tall, peaked T waves occur due to hyperkalemia. If the tall T waves are seen throughout the ECG, general hyperkalemia is present. P waves will be small, PR interval short.

When typical tall, peaked T waves are seen only within a specific set of cardiac leads, it suggests impending infarction. The tall Ts are due to potassium leak through damaged membranes in the area of the infarct

Your symptoms are not typical for just having periods of tachycardia.  I would be upset if I felt like I had a 50 pound weight on my chest or saw black spots when I had tachy problems, unless there was a clear indication of the reason.  Please don't stop until you are comfortable with the answer you're given.  Too often doctors do not listen and we know our bodies best.  If you feel there is something wrong, don't stop bugging them till you get the answer you deserve.

[fallingapart40]

Thanks!

Few details - I am 40, female, overweight from last pregnancy three years ago. I have tried everything to lose the weight and can't budge it. They did do blood work... complete metabolic panel, lipids and thyroid screen - all normal. I thought the thyroid might be a factor with my weight issues but they said no. I have reactive hypoglycemia and I have had the faintness and racing heart if I let my sugar get too low but never chest pain. I had not had anything that would affect my sugar and I asked about that possibility and they checked my sugar and it was great.  I had a CT of my lungs because the GP had sent me for an ultrasound to see if I had a blood clot in my leg causing the swelling they did not find anything - this was on Friday - he gave me a diuretic - Maxzide and said take it Saturday morning, I did. Felt horrible until about 3 pm and the swelling did not really change much. That evening we took our daughter to see Space Chimps and I noticed that I was "woozy" and unsteady but an hour or so later the pill started to work and the foot went back to almost normal - just a tiny bit of swelling remained behind my ankle bone. My foot looked better and I could bend my toes again! I went Sunday about my normal business felt pretty good other than I started to notice pressure in my chest not much, just enough I felt it. Like just before you get bronchitis. Took it fairly easy but felt pretty much ok. Monday morning the bottom fell out and all this started. My foot had re-swollen some - not fully but enough my shoe was too tight to wear - I can only wear sandals comfortably on the left side. I got up Monday morning and went to take a shower - I noticed that I could feel my breathing but the air quality had been bad so I was not too concerned about it. I started showering and was overwhelmed by the sudden symptoms of shortness of breath, dizziness, chest pain and pressure - shooting pains from my sternum through my left breast and around to my ribs - painful! - I started seeing black dots - I crawled from the shower stall into my bedroom and when I got into the cooler air I could breathe better but I still felt faint and my heart felt like it was going to beat out of my chest. Because my daughters (15 and 3) were sleeping and my husband and son had left already I just sat in the floor by the air vent and called to my oldest but she could not hear me since her room is too far away. After five or six minutes the symptoms started to calm down and I went to get my daughter. I told her to get ready and stay alert for me to call her that I needed to go get this checked. I felt weak and I was scared but I felt less pounding just faster than normal heart rate - the fact that I could feel it told me that but I did not think at that point that I was having a heart attack since it had gotten better. I actually thought maybe they missed the clot and it had hit my lung. (My mom has lengthy history of clots!) I went back into the bathroom to try to dry my hair and get dressed but I could not take the heat of the dryer - it started again and I had to go back and sit down - lasted about 5 minutes this time. I hurried my daughter up and had her get the toddler ready. I got up to get dressed and did not even have the energy to brush my hair. I had another round of pounding and pain and shortness of breath. I sat on my bed and pulled on clothes and we left for the doctors office - our hospital is BAD so the doctor was safer, I thought. He basically thought anxiety or pulled muscle  - I explained that I had done nothing to pull a muscle but he grudgingly sent me for CT to be sure after telling me to go shopping first and see if that helped it. I was hurt and mad over that. I waited six hours for CT with moderate pressure on my chest, hard to breathe, dizzy if I moved much and the shooting pains. I was told CT clear and to go home and lay down. To call 911 or go to ER if I got worse. Mad and scared, embarrassed that he was right about the clot - I did. I hurt all evening and night but not scary hurt just like I had 50 pounds sitting on my breastbone - so long as I was very still, breathed carefully and did not talk, I could tolerate it. The next morning I still felt bad - not as bad - still had the pressure and breathing issues but no shooting pains and I was not dizzy. I went back to doctor and he said maybe I was getting shingles that I would likely break out in a day or so around my left breast. He put a steroid shot in the muscle beside my breastbone (and after being wrong about the clot and not knowing that this might not be correct - I let him - he has been my doctor for 30 years and never steered me wrong before) BUT when I sat up my heart started to pound - they said my heart was only 80 bpm and he went back to anxiety and I got mad and insisted that he check my heart. He hooked me up to ekg and an hour later I was in the cardiologists office. My heart was at 145 bpm when I got there - they did ekg said I had abnormal T waves, gave me atenolol, set up tests and sent me on my way. No one really clued me in to anything - I had to keep asking to even know what the tests were. I went the next day for the blood work above. The nuclear and echo were this past Thursday. I was at 90 bpm when I started the nuclear and she only let me go to 155 which I thought was low. They sent me to eat and told me to take atenolol and come back in an hour. When I got back I was still at 123 bpm.  After the pictures, still at 113. They would not let me leave until it got below tach and told me to go home and lay down that they would call if I needed to come back before my scheduled echo at 6. They called to tell me people canceled to come early but nothing about the stress test. The tech did the test and then told me to go home.  Then nurse called to tell me the stuff I put above. Right now I have a little pressure on my chest and intermittent shooting pains, I can feel every breath going in and out and unless the air is hot I feel ok - if it is hot I get more pain, pressure and dizzy. My heart is about 60 bpm now but a bit ago I went to the other end of the house to get my daughter more juice and it was 85 when I sat back down. My foot is somewhat swollen - too much through my toes for them to bend much. I can feel my heartbeat in  my ears too....

The panic/anxiety doesn't fly for me because I have had more stressful events without the problems I have now- my 4 week old daughter had to have a craniectomy to repair a birth defect 15 years ago - nothing happened then - my husband has had two rounds of cancer issues -no symptoms then. Heck when they told me I was pregnant a few years ago even after all the treatments my husband had had - they said she could never happen, that I did not need to take the pill anymore well...eight years later GOD proved who is in control of that! - No episodes then either.  

The black dots still come when I get to the tach levels and I get short of breath easier.

I just feel like the doctors are less concerned because I have been mostly healthy and it is a common thing for panic/anxiety issues to manifest this way. BUT (especially the cardiologist who has talked to me all of 15 minutes) they don't really KNOW me.

Sorry for the length I thought that it might make things make more sense.

Thanks for all your help! It really does help!

[dolfnlvr]

You know what though???  I will go as far as to say this... I think your cardiac symptoms are benign, but after re-reading this whole thread I wonder whether or not there is something completely different going on that is CAUSING the cardiac symptoms.  That swollen leg may be more important then we think.  And, to be honest, it is possible that the cardiology department isn't giving it much thought.  

Doctors have this tendency to compartmentalize the human body instead of looking at it as a coordinated SYSTEM.  The fact that these symptoms all came about at relatively the same time indicates that they are not likely to be seperate, but connected in some way. I think I might hound my GP for some discussion about what is going on if I were in your situation.

Please realize, I am not saying that your condition is worse then they say.  I still think that your cardiac symptoms are benign and are not going to shift to a deadly condition.  I am not trying to add concern back into your mind.  I am just brainstorming and considering that perhaps this has nothing to do with your heart health at all, but something else entirely.  

You had blood work done?  What did they test?  I'm sure they did a CBC and thyroid hormone check.  What else did they check for?  Anything?

[Momto3]

Dolpfnlvr and RNRita are right on!!   They've been there, done that and have a great understanding of how we feel and react : )

As for getting copies of your records...I have found have copies to be incredibly helpful.  I can watch for changes in the readings, and I have the paperwork ready in the event I need it for another physician.

You mentioned that your echo came back fine, but that there was a reference to a "small" heart.  I did a little research and didn't come up with any explanations, but I agree, that it's doesn't sound problematic.   The fact that you had a good stress test (no ischemia) is fabulous!!  That's the good news....The bad news is sometimes the arrythmia episodes are so scary we can not imagine they are benign.  Rest assured, you are not alone.  We will help you through the scary stuff and we'll be here when you need to talk, share, vent or find information.  

As for the tachy, see what the doctor says at the upcoming appointment. If you are not comfortable with the results of the appointment, check with your insurance company on how to schedule an appointment for a 2nd opinion.  Personally, I am most comfortable, and confident, with a physician who actively listens and is interested in helping me to understand my own situation.  What you are dealing with does not sound serious, but it is bothersome to you and therefore warrants answers and potential suggestions for treatment and/or acceptance.  Therefore, if you have questions, be sure to ask...Some doctors don't share information unless we ask.  Prepare a list of questions or things on your mind and take it with you to the appointment.  You are less likely to forget anything and you will feel more confident when you have the answers.

Keep us posted!!  You are not alone : )
connie

[RNRita]

I agree with all the above, but I am concerned about one thing.  You said you have edema in your left leg. I would definitely try to find out about that.  Ask what the reason for that might be.  I don't know how old you are nor your other conditions, but you need to get that checked.  No one should have edema that doesn't go away or isn't, at least, given a reason.  Otherwise, try to relax.  I know it can be hard.  Take if from someone who has the same heart rate when I go off my atenelol.  I've been on it for 21 years.

[fallingapart40]

WOW!

How sweet of you to get that information for me!

Yeah, I know that the priority list is crucial and if mine were really bad I would want to be moved to the front of the line too! I am just very frustrated by the fact that the group has 28 cardiologists on staff and 6 PA's - seems like someone could look at the tests and tell me something before then!

Not knowing if it could get to a level of life threatening has been the hardest since the symptoms seemed to "fall out of the sky" and I really thought I was having a heart attack or pulmonary embolism the first time it happened! The not knowing what might be next has been scary! The first time because my husband and son had already left for work and my daughters were sleeping - one too young to understand to call 911 if needed. Then my GP blew me off and then rushed me to cardiologist after I insisted on the ekg... I have a hard time with not knowing - I can deal with it if I know what I am dealing with.

This really helps me though... hearing other viewpoints and reading that if it is PSVT/SVT it is just bothersome more than anything. Just wish I was sure that is what it is... and it would help to know for sure that the echo had no abnormalities.

It also is great knowing that there are people who are not choosing between my being stressed out, having a nervous breakdown or going nuts... or fussing over me and asking me if I am ok every five seconds!  

Thanks for your help!

[dolfnlvr]

Unfortunately....yes. Your nurse is generally correct in that your stress test indicates that you are not in a life threatening situation. This being the case, they have basically triaged you as non-emergent and will work with you at a pace that fits your diagnosis.  As a person who is experiencing these issues, there is NO WAY that their time frame will work for you. At the same time, from a third person's point of view one can understand why they aren't falling over themselves to do anything.  Of the MANY patients they see daily, and the many life threatening conditions they treat regularly, they HAVE to prioritize or go insane.  I know it is REALLY irritating to be uncomfortable and scared while your doctor goes on VACATION or to a conference, but no matter how you look at it, SOMEONE is ALWAYS uncomfortable and scared.  

Having a good stress test result is WONDERFUL news.  The tachycardia will need to be addressed, but at least you know that your heart is structurally normal and the tachy is generally benign.  This will not help you feel better, but at least you can take solace in knowing that your situation is NOT life threatening.  

As for the small heart...that's a relative thing.  It is not likely to affect ANYTHING and does not likely have anything at all to do with your health or your well being.  Size doesn't really matter :-)

The following information was found on Medline plus for your perusal.

Paroxysmal supraventricular tachycardia (PSVT)

Contents of this page:
Alternative Names
Definition
Causes
Symptoms
Exams and Tests
Treatment
Outlook (Prognosis)
Possible Complications
When to Contact a Medical Professional
Prevention
References


Alternative Names    

PSVT; Supraventricular tachycardia
Definition    

Paroxysmal supraventricular tachycardia (PSVT) is an occasional rapid heart rate. "Paroxysmal" means from time to time.

Causes    
Normally, the chambers of the heart (atria and ventricles) contract in a coordinated manner. The contractions are caused by an electrical signal that begins in an area of the heart called the sinoatrial node (also called the sinus node or SA node). The signal moves through the upper heart chambers (the atria) and tells the atria to contract.

PSVT starts with events taking place above the lower heart chambers (ventricles). PSVT can be initiated in the SA node, in the upper heart chambers (atria), in the atrial conduction pathways, or other areas.

PSVT can occur with digitalis toxicity and conditions such as Wolff-Parkinson-White syndrome.

The condition occurs most often in young people and infants.

The following increase your risk for PSVT:

Alcohol use
Caffeine use
Illicit drug use
Smoking
Symptoms    

Anxiety
Chest tightness
Palpitations (a sensation of feeling the heart beat)
Rapid pulse
Shortness of breath
Additional symptoms that may be associated with this condition:

Dizziness
Fainting
Note: Symptoms may start and stop suddenly, and can last for a few minutes or several hours. A PSVT lasting more than half of the day is considered an incessant PSVT.

Exams and Tests    

A physical examination during a PSVT episode will show a rapid heart rate.

The heart rate may be 150 to 250 beats per minute (bpm). In children, the heart rate tends to be very high. There may be signs of poor blood circulation such as light headedness. Between episodes of PSVT, the heart rate is normal (60 to 100 bpm).

An ECG during symptoms shows PSVT. An electrophysiology study (EPS) is often necessary for an accurate diagnosis and to recommend the best treatment.

Because of the sporadic nature of the PSVT, its diagnosis may require 24-hour Holter monitoring. For longer recording periods, a "loop recorder" (with computer memory) is used.

Treatment    

If you do not have symptoms, PSVT may not require treatment.

If symptoms occur or if you have another heart disorders, treatment may be necessary.

If you have an episode of PSVT, a technique called the Valsalva maneuver can be used to interrupt the fast heartbeat. Hold your breath and strain, as if you were trying to have a bowel movement, or cough while sitting with your upper body bent forward.

Splashing ice water on the face has been reported by some people as helpful.

Emergency treatment of PSVT may include:

Electrical cardioversion, the use of electric shock to restore a rapid heartbeat back to normal.
Medicines through a vein, including adenosine and verapamil. Other medications may be used, such as procainamide, beta-blockers, and propafenone.
Long-term treatment of PSVT may include:

Daily medications such as propafenone, flecainide, moricizine, sotalol, and amiodarone.
Pacemakers to override the fast heartbeat; very occasionally used in children with PSVT who have not responded to any other treatment.
Radiofrequency catheter ablation; currently the treatment of choice for most PSVT's.
Surgery to change the pathways in the heart that send electrical signals; this may be recommended in some cases for people who need other heart surgery.
Outlook (Prognosis)    

PSVT is generally not life threatening, unless other heart disorders are present.

When to Contact a Medical Professional    

Call your health care provider if:

You often have a sensation of excessive palpitations and symptoms do not end on their own in a few minutes
You have a history of PSVT and an episode does not go away with Valsalva maneuver, or if other symptoms go along with the rapid heart rate
Symptoms return frequently
New symptoms develop
Prevention    Return to top

Avoid smoking, caffeine, alcohol, and illicit drugs. Medications used to treat the disorder may be given as a preventive (prophylactic) treatment in people at a high risk or who have had previous episodes of PSVT.

References    Return to top

Olgin JE, Zipes DP. In: Specific Arrhythmias: Diagnosis and Treatment. In: Libby P, Bonow RO, Mann DL, Zipes DP, eds. Braunwald's Heart Disease: A Textbook of Cardiovascular Medicine. 8th ed. St. Louis, Mo: WB Saunders; 2007: chap. 35.


Update Date: 5/12/2008

[fallingapart40]

Finally got a call back from the nurse to say that stress test was ok- no blockages...she didn't know about the tach but said I should not worry because as long as the stress was  not showing blockages it was not life threatening to have tach. (and I am not sold on that being true!)  I asked about the echo and she said they had not processed it all but the tech had noted that my heart was small???? Kinda creepy thing to say! Now getting jokes about being the Grinch that I do NOT find funny! She told me I would get the rest of the results the 21st. He is going out of town and I should just take the atenolol and if I get short of breath with chest pains to go to the ER. well DUH!

Is this normal treatment?

[dolfnlvr]

Even on a PPO you can have your primary care physician refer you to a different cardiologist for a second opinion.  Best thing to do is to call your insurance company, or find a copy of your hard to read and translate plan, and determine the procedure you need to follow in order to get a second opinion. I'm not positive, but I think it is a law that second opinions be granted by insurance companies.

Also, you DEFINATELY have a law that supports your getting a COMPLETE copy of your medical file.  If anyone tries to deny you this paperwork then they are breaking the law.

Good luck.

[fallingapart40]

How do I get around my insurance company for a second opinion? We have a PPO group insurance plan and they are strict about referrals. I would love to have a doctor that cared about the position I am in too!

[dolfnlvr]

I really don't know what your situation is, but if I were in your shoes right now, I would be seeking a second opinion, if only to solicit the help of a doctor who will keep you informed during such a stressful time.

[fallingapart40]

No, I only saw the cardiologist once - he ordered the tests and put me on atenolol but has not given me any information even though it has been 10 days. My next appointment is not until the 21st. His nurse called with the blood test results last Friday but when I called to report the edema in my left foot (it never goes all the way down but it fluctuates from mild to moderate and only the left) she said she would check with him and get back to me but that was Tuesday and I have not heard back. I left her another message yesterday so maybe she will call today.

I did not know I could ask for copies - I should do that!

[Momto3]

Have you seen an electrophysiologist (EP), a cardiologists who specialize in rhythm disturbances?

What does the doctor say?

Also, sometimes it helps to ask for copies of all test results.  Beside having them for your own records, you can take copies of the results if you decide to go for a second, or subsequent) opinion.