Long qt syndrome diagnosis

[Laws1980]

Hello wondering if anyone can help ..today I have been to doctors and he said I have long qt syndrome ...I had an ecg because I have palpitations ...my qt interval is 494milliseconds he says upper limit is 450 so I'm bordering on at syndrome ....I asked if it would get worse he said no probably not as he thinks I've probably had it my whole life ?. I asked if I need further monitoring he said no not really but you can have a yearly ecg if it puts your mind at rest I said yes please to that ....I am also on on 200mg of sertraline he agreed I could stay on these as I believe study showed sertraline is not one of the anti depressants linked to lqts ...after researching lqts I am wondering if it is ok to not investigate further as my doctor implied it's not a big issue

[PeterWh]

No I would investigate further on the forums here, NHS publications, patient plus, bootsmd and the like.

Personally I would go back and insist on seeing a cardiologist who specialises in arithmyias or an electrophysiologist to get their opinion. (See next para). Whilst different ones have different opinions that is their specialist area and they will have far more knowledge and experience. Also although it is only 45% over range that actually is 10% HIGH and ranges are set by specialists to define limits and you are over limit.

Using an analogy you want to see the electrician of the heart rather than a plumber of the heart.

[Laws1980 in reply to PeterWh]

Love the analogy...I have rang doc again....it just seems they are being a bit blase about it

[PeterWh in reply to Laws1980]

Unfortunately that happens - particularly if they don't understand or did their training a few years back.

I know it is a different affliction but I have persistent AF and one GP told me (not my own one) that 15 years ago AF was covered in less than 1 hour of their training.

Electrophysiology has only really developed in the last 10 to 15 years. I have found at the hospital (not heart dept) that even some of the doctors in the 20s and 30s know very little about AF and heart electrical issues!!!!

Last year on one occasion when I visited my GP she asked if it was OK to have a medical student their during the consultation. I said yes. My GP turned to the student and said Peter has permanent AF (I corrected to persistent) and he knows far more about AF than I do. My GP went even higher up in my estimation (she is very good anyway).

[Laws1980 in reply to PeterWh]

It's sad ...I'm having the same problem with my auto immune thyroiditits being treated properly too ....as doctors don't know enough about it

[Kizzie54]

Have you seen a Cardiologist ? Long QT needs to be monitored. have you been put on a beta blocker ?

[Laws1980 in reply to Kizzie54]

Nope no cardiologist..but gp said I could have ecg if I wanted early.. Bit he didn't think necessary as prob had it all my life

[Kizzie54]

Also anti depressants can affect QT intervals! You need a more experienced opinion see a cardiologist.

[Mazza23]

I have lqts and have to be very and I mean very carefully what drugs I take. Crediblemeds is a great site they updAte all the time

[Laws1980 in reply to Mazza23]

Just checked and sertraline is on the list as conditional risks...I don't really fit into the other conditions it lists but gonna speak to doc again

[Laws1980]

Well rang doc again ...spoke to different one she said pretty much the same as the last one....I'm just bordering into lqts and that I have probably had my whole life and that its ok to take the sertraline as I've been on it 8 years so if anything was going to happen it would of done by now!!! I said if I've had it whole life that must mean genetic ....so what about my children?.. I already have one that has had open heart surgery ...she said no need to worry as prob not genetic ...probably just me!! Same as if someone's white blood cells are high but they are healthy ...that level is just the norm for them

[Laws1980 in reply to Laws1980]

Yep it still doesn't sit right with me ...however when I spoke to second doc I also asked her to confirm what the qt interval was as they both kept saying it's borderline .....but 494 isn't borderline from the research I have done ...she hadn't even looked directly at the ecg ..and said ohhh 364 rings a bell??? She tried to open it up but it wouldn't load said someone old ring to confirm naturally no one did tried to ring again today and they can't find the hard copy of ecg cos a few weeks ago ...!!!, receptionist managed to open scanned copy but couldn't give me value as not clinically trained ....advised me to have another appt with doc ...so I'm just going round in circles ...it's definitely not in 364 area cos they wouldn't of even flagged it ...it's definitely over 450 cos first doc said it was over top range ...so now the doctors have totally confused me

[PeterWh in reply to Laws1980]

Ask for a copy

[PeterWh in reply to Laws1980]

And keep persevering for a referral. It is totally irrelevant that you have had it all your life or that you have taken the sertraline for 8 years. You may just have been lucky to date!!!! I am NOT saying it could be serious because I am not medically qualified. At the end of the day you are at least 10% over the limit, maybe more if the lower number. I would not be happy until I had seen an EP and had further tests. A GP is not a heart specialist and almost certainly won't be up to date with all the developments and nuances.

[Laws1980 in reply to PeterWh]

Thanks I'm gonna do just that on Tuesday..try get a copy

[PattiJay in reply to Laws1980]

Hi again Laws!

Do you know what your QRS interval is? By any chance? If it is over 120 then you have other issues going on and need to see an EP doctor.

Thanks for considering this. It's very important!

[Kizzie54]

Whatever they say your QT interval is abnormal!!!- It took my daughter to die before we discovered our family carried the gene for CPVT. My mum, my son and I all have ICD's. To me something to me is either normal or abnormal no in betweens!

[Kizzie54]

P.s CPVT is an arrthymia

[PattiJay]

Hi Laws1980!

I'm from the USA, and the first time I ever heard of Long QT Syndrome was on one of those ER or Mystery Diagnosis shows! I have consistently had a QT interval over 490 and frequently over 500 for the past 5 years! I've also had QRS intervals higher than 130 for the past 5 years (120 or below is normal) so with LBBB and low EF and symptoms of HF, I qualified for a CRT-D in 2012. I asked my EP if maybe I had Long QT, and she said she thought I might, but it did not show up in the GENETIC CARDIAC PANEL that was run the year before to rule that out, plus the LBBB (left bundle branch block) was causing so much dysynchronous heart functioning that the implant was imminent for my survival, whether I had Long QT or not. I guess my EP said that with the Long QT and Long QRS...The LONG QRS being of UTMOST importance in qualifying for the ICD implant, both are VERY VERY strong indicators of underlying heart disease and possible future heart failure, and YES you really SHOULD have yearly ECGs, and if you ever get heart symptoms and a wide QRS, your government health program might want to throw in an echocardiogram. You should rest well if your doctor can agree to these two points in your overall treatment plan. Keep us all posted and very best of luck to you!!!