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Alexa
Posted on Sunday, March 07, 2004 - 08:22 am:   

Can the QTc be prolonged by hypothyroidism? Is there a connection between thyroid function and LQT?
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Dr. Jorgen Kanters
Username: Jorgen

Registered: 08-2003
Posted on Tuesday, March 09, 2004 - 10:36 pm:   

Yes, QTc is slightly prolonged in hypothroidism.

Im not sure what you mean with the last question. In rare occurrences hypothyroidism has given QT prolongation and arrhythmias. However most LQT patients have normal thyroid function
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Alexa
Posted on Wednesday, March 17, 2004 - 09:21 pm:   

Recently, I have been under a lot of stress due to recent delivery and the subsequent diagnosis of my baby with LQT. I developed PVC's which became very strong and made me scared. My blood preasure went up 50% to 150/100 (normally I have 105/65). I was taken to the ER and my TSH was 19.5! The ECG showed a QTc of 494 at night. Two subsequent ECG showed QTc of 470. I have been wondering whether my prolonged QTc was a result of the anxiety, high blood presure, multiple PVC's and severe hyopthyroidism (possibly postpartum) or whether I have a LQTS. All my previous ECG's were normal, I am 38 years, acive, assymptomtic, no family history of LQT, all relatives still alive. Except my baby was suddenly diagnosed with long QT - he has been assymptomatic (knock on wood) and all my heart problems started with his diagnosis. I know it makes a lot of sense to doctors to see my QTc as a hereditary thing and I am wondering if they will not overlook my other problems and be quick to label me a LQT patient due to my son's diagnosis (his QTc has been ranging from 454-470 on three recent ECG's). He is on propranolol. I was put on 25 mg of Toprol for the pvc's temporarily.
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Dr. Jorgen Kanters
Username: Jorgen

Registered: 08-2003
Posted on Wednesday, March 17, 2004 - 10:02 pm:   

Your sons QTc is prolonged and he has probably Long QT Syndrome. Your QTc is moderately prolonged and since your are in your sons family, you probably have Long QT. You can get an genetic test to identify the Long QT gene which affects your family, but I agrre with your doctors diagnosis (from the presented facts only)

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cann
Posted on Saturday, March 27, 2004 - 04:36 am:   

before i collasped i was taking nyquil to go to sleep as i was having a hard time getting and staying asleep. would this of caused long qt interval and effected my potassium as well? i know i have it but dont know if it is herediatary or acquired. thank you
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debbie brown
Posted on Thursday, April 01, 2004 - 12:27 am:   

If you think that you have Lqt dont take any cold remedies. When you have long QT you have to be careful of taking any drugs also you have to be careful on types of teas. There are herbs that you can't take also. I have not been diagnosed with long Qt as of yet one ekg was borderline showing 450 but my sister has it and my niece died from it. I took a cold tablet on christmas eve and fainted. I know now that I can't take anything unless I talk to my doctor first.
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Shelly
Posted on Friday, April 02, 2004 - 04:15 am:   

My son was diagnosed with Long QT Syndrome last March, 2003. We do not have any family history of young deaths. My other two sons were checked by EKG. Their numbers were borderline so the doctor requested treadmills. My youngest son is 6 so a treadmill was inconclusive. My 12 year old was also inconclusive because it varied long and short, long and short. In late August, I had plastic surgery. 10 days after my surgery I began fainting. It happened 11 times in two weeks. My EKG does not show long qt syndrome. Can you still have long qt syndrome even though your EKG doesn't show it. My EKG show a S & T wave abnormality. It is now April, 2004 and I have seen neurologists, cardiologist, and still no concrete answers. I'm still fainting anywhere from 1 - 2 times per week. They have put me on Midodrine and atenolol. The Midodrine to raise my blood pressure which is low (I passed the tilt table test), and atenolol to keep my heart from racing. If you have any advice I would love to hear it.
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Dr. Jorgen Kanters
Username: Jorgen

Registered: 08-2003
Posted on Saturday, April 03, 2004 - 12:10 pm:   

Yes, one could have LQTS even with a normal QT interval. I would recommend a genetic screening of your son which maybe could tell what kind of LQTS he have, and then it will be easy to find out if you are. If you have ST abnormalities and fainting and mother to a kid with LQTS its very suspicious for LQTS.

The drawback is that a full genetic screening costs about US$5000.

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Alexa
Posted on Sunday, April 04, 2004 - 04:20 am:   

In addition to the high cost, genetic testing is not fully reliable because of a high false negative rate (up to 30%) and the possibility that there are unknown genes that may cause long QT in addition to the ones currently known for which the labs screen.
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Jmac
Posted on Thursday, May 13, 2004 - 01:03 am:   

Dr Kanters:
How can DNA be false negative? Can it be false positive? If so, why do it at all?
JM
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Victoria Brown
Posted on Tuesday, May 18, 2004 - 03:04 am:   

My advise is ok get genetic testing that is if you make it by the time it is finished. I can not stress enough here about Long QT. Gentic testing can take any where from 6 months to 12 months before you get an answer and one may not have that long, and then they may not find the gene that is carring this fatal disease. I am under genetic testing right now and it has already been almost 9 months. This disease doesn't wait for you to find out what gene it is. You can not take chances you have to treat your self as if you have long QT, because this disease is so fatal, and you can be here one minute and the next be gone. I know I lost my daughter to this and if they would have listen to me and looked at me more serious, they would have found I didn't have epilepsy. I was misdiangnosed with epilepsy for 20 years. My daughter started doing the same thing too and no one would listen. ECG's dont' always show Long QT or even show in other test such as the tilt test. This is why they call this disease fatal. What makes me mad is some doctors wait till you pass out again or blame it on something else.They have to remember that one pass out may be the last. My daughter passed out a total of 5 time and the last one killed her. There has been many people having the 1st symptom be death. I have had over 30 pass outs in my years. Be your own advacate when it comes to your health, and ask to see you records. Trust me you are not told everything that is in there. I found that out the hard way. Yes I sound angrey I should be I lost my daughter to a wrongful death ad I was misdiagnosed. Also I guess because I read these stories and it is the same thing I was told about myself and my daughter. I'm sorry but I think we are losing good medical profession and I think they better study Long QT more in school. I know it is a hard disease to diagnose and little is known about it but our records where clear and so I do blame it on poor medical and poor education. I am not saying that all doctors are bad, but there are alot of bad one's out there and we have proof with all the deaths to this disease for those that have been misdiagnosed. When I was in the hospital they didn't know much about it let alone how to treat it. It took me to teach them with my pamplets that I had gotten from SADS. It is sad that I diagnosed our disease and not doctors. I should have died becasue I was sent home the 1st time with a reading of QTc of 700 ,and then in the hospital they never shocked me when i was in Torsodes de pointes and was in VB for over 3 minutes. My doctors in another town who put in my pace maker defibrilattor call me the walking miracle. They told me I should have been shocked, I guess I am lucky I dont' have brain damage. Please ask questions and treat yourself as if you have this disease. Dont' take over the counter drugs, and ask about any drugs you are put on to see if it can make the QT longer, but even it it doesn't, someone with long QT it can, so the best thing is to try avoid all drugs if possiable. SADS has a list of drugs to avoid. I guess I gave my speech today and I hope no one is upset but I want people to live and not go through what I have gone through. Good luck and take care and be your own advacate. Ask all the questions and demand those anwers,Thanks victoria
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Dr. Jorgen Kanters
Username: Jorgen

Registered: 08-2003
Posted on Tuesday, May 25, 2004 - 07:36 am:   

To Jmac.

If the patient had a defect in a yet not known gene, examining all known genes will reveal nothing, a false negative.

Even healthy patients have changes in the genes including the genes known to cause Long QT. Some of these changes does not matter whereas other causes Long QT. If you detect a change in the DNA of the LQTS genes which doesnt matter, it would be a false positive.

The diagnosis of Long QT is a clinical desicion. DNA testing is very helpful but cant stand alone.
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marti lanier
Posted on Friday, October 08, 2004 - 09:48 pm:   

is prolonged qts the same as pvc's cause i have had all the testing and no prolonged qt's but i have pvc's.
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Dr. Jorgen Kanters
Username: Jorgen

Registered: 08-2003
Posted on Saturday, October 09, 2004 - 11:56 am:   

no
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KELLIS
Posted on Saturday, March 19, 2005 - 10:36 pm:   

Does anyone have or know where I can get pamphlets on lqt to get more info about the disease. I was diagnosed with it, have an aicd, but really know NOTHING about the disease.
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Bionic Roadrunner
Posted on Sunday, March 20, 2005 - 04:04 am:   

Get on the home page of this site and you will find a lot of information about LQTS.
Another very good site is www.sads.org
You can also research Long QT Syndrome on the internet too.
Good luck and stay well!
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andrea davison
Posted on Friday, February 10, 2006 - 04:23 am:   

I have recently been haveing chest pains. So i went to the doctors and on the ekg they found prolonged qt wave.My son has had around 50 syncope episodes he is now 22. They were looking for long qt waves but i guess never found them.When i saw that on the ekg i said maybe he does have it and maybe i do?The doctor scheduled me for a thalium stress test. What do you think?
Family history my grandfather had heartproblems?i have passed out around 2 times?My mother has passed out? Im just very concerned. let me know what you think? Thank you Andrea davison
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Dr. Jorgen Kanters
Username: Jorgen

Registered: 08-2003
Posted on Thursday, February 16, 2006 - 06:40 pm:   

Ask for your own QTc and your sons
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andrea davison
Posted on Friday, March 17, 2006 - 06:47 pm:   

I had a perlonged qt qtc 499. My son has alot of syncope 50 episodes.The last episode was last year. They did not see a perlonged qt.I have been on zyprexa. The doctor told me that the medicine will cause a perlonged qt. I stoped taking the medicine a month and a half ago. Now my qtc is anywhere from 450 to 475.I do not have any sudden death in the family.I am going for a tilt table test in a couple of weeks.The doctor says he dont think i have long qt syndrome.My simptons are chest pain light headedness and dizzines and i get real tired.I passed out twice in my life. Once when i was a teenager and once around 5 yrs ago.i feel my heart doing funny things.I was also on a very light dose of zyprexa 2.5mg Ill wait to see how my test come out. Do you think i should go for a second opinion?
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Dr. Jorgen Kanters
Username: Jorgen

Registered: 08-2003
Posted on Monday, March 20, 2006 - 07:07 pm:   

probably.

You have a borderline QT even without Zyprexa. With syncopes you have at least 3 point which give you an intermediate probability of having LQTS.

That your son have a high incidence of syncopes just rises my suspicion of LQTS. That he has a normal QTC does not rule out LQTS, although it lowers the probability.

The tilt table test is normally positive in LQTS, so a positive test will not help excluding the diagnosis.

If you have alive parents, other kids and siblings, I would suggest that all of these should have an ECG performed, and then maybe ask for a second opinion.

You could have LQTS and you could not having it. The decision is often very difficult in borderline cases even for a specialist in LQTS
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Andrea Davison
Posted on Saturday, April 08, 2006 - 04:41 am:   

I recently had a tilt table test done and it came out negative. And i had a ecg done and they said it was back to normal.My question to you is would it take two months for my qt wave to go back to normal? I was on a pediatric dose of zyprexa 2.5 mg. My pharmasists said the most it would take is 14 days.Im 40 years old.I did make a second oppinion appointment with a long qt specialists in philadelphia Dr. Dixit ep. I sent for all of my sons records. It just raises my suspision of long qt since they where looking for that in my son.All of my tests have come out negative for other things that can prolong the qt. Thank you Dr.
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Fresia
Username: Fresia

Registered: 09-2007
Posted on Monday, December 31, 2007 - 09:59 pm:   

Dear all,

On boxing day I experienced a horrible event which hasnt happened to me in over 18 months (since I've been on beta-blockers).

While resting on my bed next to my husband who was sufering from flu, I began to feel myself 'greying out' and at the same time I felt very forceful (but not tachy)heartbeats. I suppose it felt similar to a run of about 10 forceful Ectopic beats only much more uncomfortable and worrying as I was weak and on my way to a faint/black-out. At the time I felt like I was passing away, or passing out.

I called my appointed arrhythmia nurse for support, but there wasnt much she could say to help.

I've been on beta-blockers for the past year following Atrial Fibrillation events for which I had an ablation in August.

Since the ablation I've been having runs of what is considered possibly SVT. On the ecg it apparently looks like VT. (+ suspected capture beat) My regular Cardiologist was so concerned he pulled me into hospital for 5 days monitoring. At that time he consulted my EP, and as I have Right Bundle Branch Block, they agreed this was why the QRS shown was wide and probably was not VT. I was discharged on the basis that although I was producing runs of what looks like VT, it probably wasnt and told dont worry.(haha)

My regular Cardiologist told me I had a boderline prolonged QT last year after I went to see him about the greying out 'funny turns'. Since then things developed further and other Arrythmia problems have surfaced and seem to have taken priority.

My cardiologist suggested an implantable loop recoreder may be useful. I see him in 10 days and will push for this.

I'm due to have another EP study on the 6th of Feb and more ablation for the supposed SVT, so will also remind the EP consultant that the dizzy turns as still of major concern to me.

I've been in contact with SADS, and they've kindly out me in contact with a consultant EP who specialises in QT, but I need an NHS referral, and at the moment no-one will grant me one! I will keep trying.

My alternative concern is, a consultant with specialist interest in long QT cannot be certain of long Qt diagnosis and is only based on markers, should an ICD be recommended, this is also a risk too. My EP is totally against a total nodal ablation and insertion of a pacemaker, and I havnt argued with him oon that point!

I despair, since I am really scared of these greying out events, I am also scared in case I have long qt syndrome, I am scared to stop beta-blockers following next ablation, I am scared that my team as missing something and that I may be at risk...

The EP I am under is apparently very good, and when I last saw him in November he tried his best to resaaure me I am safe and not at risk / long qt symdromer. I accepted his explanation, and tried to shrug off my worries and live a normal life, but when I take a funny turn like I did on Boxing Day, It just opens up all the worry once again.

Sorry for the long post,
Please send me a thread of hope...Zoe.x

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