Long QT anyone?

[Chaucer89]

Hello folks,

Anyone here familiar with Prolonged QT?

Around 2016/17 I was informed by my doctor that I was showing signs of Prolonged QT and it was believed this was due to the antidepressants I was taking at the time so I came off them. My QT went back down after I finished getting the drug out of my system. Unfortunately I don’t know the actual figures for my QT before and after as this would make the next part a lot clearer!

This year 2023 I asked my GP to go on a better anti nausea drug for another medical issue, I mentioned I had drug induced long QT in the past so doc just wanted to do a ecg to check it’s not prolonged at the moment as this drug can cause Long QT. It came back as borderline at 456 (prolonged is 460 for females) so I was refused the anti nausea. I am not taking any other medications that can cause prolonged QT so this was a bit baffling why it was borderline. (I had previously had a 7 day ECG in 2021/22 that apparently didn’t show any abnormalities which I assume includes QT level though haven’t seen report to confirm and they weren’t looking for long QT at that time).

My next ECG 2 weeks later it rose from 456 to 458. Due to other medical issues I have fortnightly vitals, bloods and ecg done so I’ve been able to monitor my QT closely lately and it fluctuates around the 445-460 range seemingly not dependent on anything. I’ve been having increasing issues with breathlessness, dizziness, rare occasional chest pain that goes down arm and into jaw but only lasts few seconds, fatigue, weakness in arms and legs (thighs feel weak and jelly like when walking). General bloods are currently okay. I’m 34 female and currently underweight at 43kg but electrolytes are fine so it’s not being caused by my weight which was first thought. Last week I also was experiencing a chest pain that was more towards the central right side but didn’t feel like exactly like heartburn or pulled muscle or heart attack, it was like a weird ache and was going into jaw and arms ( elbows!) but it didn’t feel like heart so I didn’t worry too much but did mention to GP. She did BP on both arms and there was a 10 point difference from right to left (102/82 in right, 92/72 in left) I typically have low blood pressure. She paused but didn’t comment on it so I assume was okay. Since then my blood pressure has been okay, if higher than normal (last BP lying 102/90, standing 120/90).

About a month ago I had a liver biopsy and about a week after, I had a ecg and it was prolonged this time at 515. I was told to get my butt to A&E if I have any worsening chest pain, breathlessness etc etc and I’d have a repeat ECG in a few days time, which turned out to be back down to borderline. I put this down to the body focusing all energy on healing liver and not enough on heart at the time but GP disagrees. I’m now booked to have a 24hr ECG and on an unrelated medical matter regarding an enlarged liver I’m having an echocardiogram done (my liver issue can be caused by right side heart failure) I’m sort of hoping they find an answer even if scary because I feel like rubbish and this constant yo yoing between not knowing what my heart is doing and not knowing why it’s doing it is messing with my head royally to be honest. I won’t be able to keep having ECGs so I want to know before that what’s causing it. Especially as I know no one else who’s experienced this and it’s hard for others to understand the mental side of dealing with it.

My GP seems to think if it was inherited LQTS I would have prolonged QT all the time but I’ve been reading studies where this isn’t the case and some can have borderline or even normal QTs. Problem is to get a referral to cardiology within our broken NHS I either need it to stay prolonged or something else unpleasant to happen.

Also of note is I have an incomplete right branch block and my latest 2 ecgs have included automated notes from the machine regarding “S1, S2, S3 pattern” “low limb lead voltage” “left atrial abnormality” and “consider right ventricular hyperatrophy” GP has not commented on any of this though so I assume not something they worry about first time it shows up? Is it normal to get random queries from the ECG machine?

I’m also just wondering if anyone here has Long QT? Do you have inherited or acquired? Is yours always prolonged? I’m struggling to find a reason why mine would be intermittent borderline/prolonged without it being inherited but I can’t see a cardiologist to test for that so I’m stuck and impatiently waiting for tests but think I’m in for a big wait!

Any reassurance? TIA

[BARTLETT1965]

I have been diagnosed with Long QT waves. They were put down to meds. The cardiologist took me off meds I was taking to c if it was induced by meds or inherited.

After not hearing back from cardiologist I made a formal complaint.

He then said I have still have them and could be down to other meds I’m on. I also have same problems as yourself. I’m now waiting for his decision on if they r interested or meds. Only problem I’ve had these pains since I was a youngster and didn’t take any meds.

Hope u get some were with urs as I can c it been anothe couple of months before I get the answer.

Jeff

[Chaucer89 in reply to BARTLETT1965]

Crazy times isn’t it, this is not a thing to mess around with and yet, getting some answers is like pulling teeth. Id be looking for a new cardiologist if you’re able, this one doesn’t sound on the ball. I hope you get some answers soon as if there is more medication you’re on that’s causing it it needs to either be monitored or switched to safer meds if possible. I know I’m now ruled out on taking any antidepressant, antipsychotic and all but 2 anti nausea medications! I’m definitely not on any medication at the moment that can cause it so no idea. Hopefully 24 hr ECG and echo will bring some clues though it’s never usually that simple!

[Pyowacket in reply to BARTLETT1965]

I have inherited long qt. It appears on every ECG and is not medication induced but can be made worse by certain pills eg antidepressants. I have a cardiologist that is an expert on the condition but I've spent one and half years on different beta blockers without getting the safer QTc interval. It's frustrating but stressing won't help. I hope you find a cardiologist that can help you.

[Chaucer89 in reply to Pyowacket]

Thank you, I’ve been thinking if I can’t get anywhere with it I might go private consult just to see an actual cardiologist about it but will see how tests go first. As you say, just have to try not to dwell on it too much!

[Mentdent]

My dive buddy has it. It hasn’t stopped us travelling the world diving. She has some restrictions on depth and things like jumping into cold water without a drysuit but our last trip was Antarctica and we’re off to Indonesia next month. It doesn’t seem to cramp her style. She’s 64 now and still travelling and very active.

[Chaucer89 in reply to Mentdent]

Amazing she managed to get that signed off! I’m going to struggle to get any vaguely tricky medication off my GP now nevermind sea diving. Good for her to not let it slow her down, can’t stop the world waiting for something that may or may not happen I suppose! It’s just one those conditions, heard people like your friend who are fine and others who drop playing a leisurely game of golf! Toss of the coin.

[serenfach]

The medical notes from 2016/17 should still be available. You have a right to them, and its free. If you feel those notes would help you just ask for them. They cannot deny you.

Long QT runs in my husbands family, so I fully understand the fear and constant monitoring. Good luck with the future.

[Chaucer89 in reply to serenfach]

Thank you 🙂 Unfortunately they were done at my old GP surgery so aren’t in my hospital records which I have and I’ve moved in the last few years and none of the scans seem to have transferred over because my current GP says she can’t see anything in my records! That or my old GP was a bit lax! I think I’ll see about requesting my full GP record just to check myself though as she is often in a hurry looking so might just need a more careful eye.

[serenfach]

I would chase the old GP - they tend not to read current medical records, let alone old ones! Joining the dots is not a thing they do. You can have blood tests that are out of range but they dont notice them until you point them out. Good luck.

[Chaucer89 in reply to serenfach]

Oh don’t I know it! It’s why I do keep every bit of hospital records, have to be the middle man between the departments as they never talk to each other and keep an eye they don’t miss things they think are “normal for me”.

Thank you! 🙂

[serenfach]

According to my hospital notes, I have a wonky prostate. I am female....

Hope this made you smile!

[Chaucer89 in reply to serenfach]

😄 just wow! I know someone who only found out they had had a heart attack (presumably small one!) in the past from requesting their medical notes and reading it. Crazy times!

[14566787]

After having chest pain and palpitations following covid infection I had several heart tests and have found out I have a prolonged QT . Doctor said it could be down to the antidepressants I have been taking for 10 years citalopram and has advised I come off them. I have been doing a slow taper since June this year and have managed to get down to 12mg from 20mg but I can't go any lower than that as I get horrible withdrawal and can't function day to day. Is it possible to stay on this drug at 12mg and be safe with the QT ? Or do I really need to come off them completely? Another option is switching to a different antidepressant but I'm concerned about side effects and withdrawal at the same time

[Palpman]

My QT interval ranges from 455 to 490 ms but it depends on my heart rate. Normalised using the QTc formula it is at a more acceptable 440 ms.

Low heart rates have longer QT intervals.