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long qt interval

I have been having incidences of palpitations and lightheadedness recently.  I had a severe incident of palpitations, blurred vision, and very near fainting at a follow up visit at the Orthopedic doctors and after they checked my blood pressure and heart rate was told to see my doctor about it.  I went to an urgent care after I left and I had high blood pressure, high heart rate over 100, and orthostatic hypertension.  I was given IV fluids, blood tests, and an ECG.  The blood tests came back with mild low potassium (3.1) and low MPV.  The ECG showed repolarization disturbances, negative, flat or low negative T in V3, V2, V4, V5, and V6 and long QT interval.  They were talking about admitting me, but couldn't get a bed, so I was told to go home and if I had another severe attack to go to the ER by ambulance.  Since then, I have continued with the palpitations, lightheadedness, and some blurring of my vision, but nothing as severe as the near fainting incident.  The slightest bit of excertion brings on an episode.  I am on 25mg HCTZ and went off of it to help with the potassium problem, but I put on 12 pounds of water in 2 days and couldn't breathe well, so I went back on it.  We were in the process of switching doctors because our doctor of 17 years is not covered under our insurance, so I just saw a new doctor who doesn't know me or my family history.  She wants me to have a cardiolite stress test and I think I should see a Cardiologist and let him/her decide what to do, which is what the Urgent Care doctor said to do.  My dad's heart stopped during a heart test and had to be kept alive until they implanted a pacemaker.  His mother (my grandmother) also passed out multiple times and even had car accidents from it.  They finally determined it was her heart and she also had a pacemaker.  My paternal and maternal grandfather's both died suddenly from a heart attack, one in his early 50's and the other in his early 60's.  I've read a little about long QT syndrome and wonder if that is what any of them had.  I don't know exactly what the problems were, but the history is concerning.  I am 58 and besides these episodes have been having a problem with mildly low potassium for at least the last year (down to 2.9) and have been given potassium supplements.  I have ankylosing spondylitis and have been prescribed pool therapy, but at this point am unsure about what to do from fear of passing out in the pool and I've read that swimming is not a good idea if you have long QT syndrome.  My insurance will pay 100% for an ER visit only if I am admitted.  My dilemma is not knowing whether this could be serious enough to warrant an ER visit or if I should seek out a Cardiologist which may take some time to get into.   Thanks
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Avatar universal
stevie-
Again, thank you for the wealth of information.  I now have a choice of many very qualified Cardiologists that specialize in rhythym problems.  Keep being passionate about helping others to find good information.  I hope you are doing well.
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Avatar universal
Wisconsin -
I appreciate and thank you for responding to my post, but I did not feel that stevie was "trying to worry" me. The information she gave me was well intentioned and very useful. The symptoms I'm having, the family history, the test results, and the doctors have made me aware that this could be of concern and needs further investigation.  I was merely trying to find out the best and perhaps fastest path to take to deal with this.  On my first post, I said the ECG showed repolorization disturbances, negative, flat, or low_negative T waves, and a Long QT Interval.  The QTc you mentioned was abnormal and in a range of possible concern as well as stating there was an arrhythmia.  I do believe if someone has a pacemaker implanted, like my dad and grandmother did (possibly even a few more of my dads siblings), that automatically indicates a rhythym problem of some kind and could indicate the possibility of a genetic component.  Whether or not the problem I am having has anything to do with genetics, I found out a year and a half ago that you need to be pro-active with your own healthcare.  My daughter was misdiagnosed with MS.  After being given a series of IV infusions and hospitalized she was told she didn't have MS but might have Sarcoidosis.  Then she was told she didn't have that but had a brain tumor and the next day told she didn't have that either.  After a week of this, we took her out of that hospital, researched the best course of action and the best doctor to deal with her problem and a few days later she was in Duke having surgery for a rare thoracic spinal cord tumor which has disabled her.  So please don't put someone down for being passionate about wanting to help others find the information they need to make informed decisions about the course of their healthcare.  I will be seeing a Cardiologist who specializes in rhythm disturbances  and am thankful to stevie for steering me to the website with that list of doctors.  I hope that you are doing well.
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Avatar universal
Wisconsin -
I appreciate and thank you for responding to my post, but I did not feel that stevie was "trying to worry" me. The information she gave me was well intentioned and very useful. The symptoms I'm having, the family history, the test results, and the doctors have made me aware that this could be of concern and needs further investigation.  I was merely trying to find out the best and perhaps fastest path to take to deal with this.  On my first post, I said the ECG showed repolorization disturbances, negative, flat, or low_negative T waves, and a Long QT Interval.  The QTc you mentioned was abnormal and in a range of possible concern as well as stating there was an arrhythmia.  I do believe if someone has a pacemaker implanted, like my dad and grandmother did (possibly even a few more of my dads siblings), that automatically indicates a rhythym problem of some kind and could indicate the possibility of a genetic component.  Whether or not the problem I am having has anything to do with genetics, I found out a year and a half ago that you need to be pro-active with your own healthcare.  My daughter was misdiagnosed with MS.  After being given a series of IV infusions and hospitalized she was told she didn't have MS but might have Sarcoidosis.  Then she was told she didn't have that but had a brain tumor and the next day told she didn't have that either.  After a week of this, we took her out of that hospital, researched the best course of action and the best doctor to deal with her problem and a few days later she was in Duke having surgery for a rare thoracic spinal cord tumor which has disabled her.  So please don't put someone down for being passionate about wanting to help others find the information they need to make informed decisions about the course of their healthcare.  I will be seeing a Cardiologist from the list provided on the website stevie directed me to who specializes in that area and am thankful to stevie for steering me in that direction.  

stevie-
Again, thank you for the information.  I now have a choice of many very qualified Cardiologists that specialize in rhythym problems.  Keep being passionate about helping others to find good information.  I hope you are doing well.
  
Helpful - 0
Avatar universal
You're very welcome! Glad I could help. Please be careful with some of the info you read about LQTS on websites such as Wikipedia, etc. Remember these can be written by anyone and are not necessarily always true.

Websites like SADS, CARE, Mayo, Cleveland are much better resources. It's best to find the right doctor and have the right tests to give you a clear picture of what is going on with your health.

Your family history is familiar with a genetic arrhythmia problem, one of which is LQTS, there are also a few others that can present with prolonged QT intervals, and sometimes, like I mentioned, it can be just from low potassium.

Hopefully you will find some answers for your family and everything will be okay for you.

Like Wisconsin2007 said, just because I have LQTS doesn't mean that everyone does. Hopefully most will realize that I was just trying to answer your question and not just give you some line of bull that everything is okay and normal. A prolonged QT interval is NOT normal and needs to be looked into. I have had family members die from this disease and it is my compulsion to help others find the RIGHT info whenever I can and prevent others from going through the same.

Please feel free to ask me anything that comes to your mind.
Take care
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267401 tn?1251852496
stevie -

I'm sorry that you have LQTS - it must add a fair amount of stress to your life.  But you might consider not trying to worry someone if you don't need to.  You probably should have mentioned the diagnostic criteria for whether someone is at risk with Long QT, and that there are several other possible explanations for abnormal t-wave morphology.  Not that Long QT isn't the right one, but because you have it doesn't mean everyone else does, too.  Long QT represents only 5% of all SCD in the US, and the median age of those is in the early 30's.

Again, like you, I think that getting the full spectrum of tests is warranted, and a consult from an EP (they can be found in most cardiology practices these days) would certainly be worthwhile.

This wikipedia article provides a good deal of information:  http://en.wikipedia.org/wiki/Long_QT_syndrome
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Avatar universal
Thank you so much for the information.  I went to the website and have found several doctors in my area at Duke that do this work and will be following up on it.  Since posting I have found out that my dad also had a baby brother die of SIDs and I had forgotten about my dad passing out in the grocery store in his early 50's.  He also had a 35 year old sister that died suddenly after calling her husband at work and telling him she didn't feel well.  By the time he got home (45 min. later), she was gone.  There is certainly enough family history and suspicion for me to take this seriously.  Again thanks for the wealth of information on that website.
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Avatar universal
Wisconsin2007,
I will jump in with some info if you don't mind, actually the t wave shape has a lot to do with LQTS and can help determine who has it and what type of LQTS they have (currently 12 types, maybe 13). Another thing is that some Cardiologists often dismiss t wave abnormalities as normal and totally dismiss a prolonged QT interval altogether. Electrophysiologists (heart rhythm cardiologists) are much more knowledgeable in the area of LQTS and other heart rhythm disturbances than the average Cardiologist.
I have LQTS and have had to learn about the disease as most doctors I have come in contact with know absolutely nothing about it or claim they do and don't. I'm fortunate to have found an Electrophysiologist.

shotzie5,
With your family history I would seek out an Electrophysiolgist who will be better able to diagnose your problems than a regular Cardioligist.

Sometimes low potassium can cause the t waves to be abnormal and the qt interval to prolong. You need to have all the tests done again after your potassium level is back up to normal.

There is genetic testing available for LQTS and this probably wouldn't be a bad idea with your family history. There are now 2 commercial labs in the US, Familion and GeneDX who do testing. GeneDX is more thorough and tests for mutations on 10 genes and Familion, for the time being, still only tests for mutations on 5 genes.

I hope this helps you.
Check out www.sads.org or www.longqt.org for more info. and doctors available in your area.

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Avatar universal
My dad and grandma's heart problems were with rhythm, I just don't know the specifics.  I don't know what caused my two grandpa's heart problems.
Thanks for the info.
Helpful - 0
267401 tn?1251852496
The funny thing about cardiologists - if the problem is really serious, they find a way to get you in pretty quick.

There are reasonable and non-dangerous explanations for abnormal t-wave morphology, but I'm not a person capable of making the determination of whether your t-wave oddness is benign or not.

Because you have such a familial history of rhythm issues (though a "heart attack" or myocardial infarction doesn't actually have to do with rhythm; it's about a loss of blood flow to the heart), I think a visit to a cardiologist would be warranted.

As I understand it (and someone please jump in if this is incorrect), long QT doesn't have so much to do with the shape of the t-wave as it does the length of time between the start of the QRS complex and the end of the T wave.  

A QT corrected for heart rate (QTc) with a duration of .45 seconds or longer should be investigated.
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