GP wants to rule out Long QT syndrome ... very scared

[anonymous98]

I saw my GP this week due to having frequent heart palpitations, lightheadedness and fatigue. I had bloods done in December and all were well within normal range. I am on antidepressants, propranolol (for panic disorder) and acetazolamide (for IIH). Normal weight but have always struggled with exercise and had a fast heart rate.

My GP diagnosed me with tachycardia (HR in the surgery was 130bpm). He stressed that this was not an emergency but he wanted to check me for 'prolonged QT'. I Googled of course and read a lot of things about risk of sudden death. Managed to get into cardiology on a cancellation and had an ECG done yesterday. The nurse wouldn't tell me my results but both she and a doctor (I'm assuming) discharged me. I took my results back to the GP and he is going to look at them on Tuesday. Didn't get a look at results as they were in an envelope. Would they have discharged me if I had prolonged QT? I'm really scared.

What do you mean by “discharged”? Presumably it was an outpatients appt? I think you just have to wait and see. Did anyone mention the possibility of POTS to you? Seems more likely…

Sorry, I meant free to leave after the appointment.

My nephew has long QT. It’s a genetic condition but can also be an acquired condition in later life. His father is a carrier. My nephew is perfectly fine, has an annual check up and has to avoid becoming too exhorted by exercise. So he can kick a football around but cant pay on a team for example.

Well yeah they wouldn’t just admit you…

Mine would be acquired prolonged QT from taking antidepressants. I'm still supposed to take my medication even though it could be dangerous. I don't know what to do.

I have long qt, I take Propanalol for it.

We have it in the family. If you know you have it, you can manage it. Why not waut to see what rhe Dr says? My brother has to be a bit careful,i was tested and dont have it but need to be aware it could be something to check in on and ket medics know us in the family if i ever need an operation. I hope you get an answer to your symptoms.

Myself and my 3 (out of 4) of children have prolonged QT. According to my consultant at my recent appointment she said that we are one of the lucky ones. We have our diagnosis whereas there is so many people out there who have it and have no idea until they collapse. Once you're diagnosed you can take beta blockers to help prevent any arrhythmias.
The main thing to be aware of is the drugs to avoid. There is a very long list which of drugs which can prolong the QT even further. If you have a Google of "drugs to avoid with prolonged qt" you will find the list.
In the mean time I wouldn't panic too much. My mum didn't find out she had prolonged QT till she was in her 50s. She had no idea, no symptoms until a stay in hospital for something unrelated.
Good luck but you will be fine.

Just found this thread..my 17 year old daughter has long QT and has a prescription for Nadolol which she takes every day. However, I am in a panic as her medication has run out (I think I accidentally put the box in the recycle 😳) and the earliest I can pick up a new supply is Wednesday!! I am ringing the GP practice tomorrow to put an urgent request in.

just wanted to hear from anyone else with the same diagnosis…

@CrispsnDips please do not stress. Yes it is important to take her medication but she it is just a preventative measure. The medication helps prevent a cardiac episode but the chances of having one is quite small. I got my diagnosis in 2012. My mum got hers then too but she was unmedicated for 51 years of her life, my grandmother 76 years. 3 of my children also have long qt. I was originally on nadalol but it can be quite hard to source so was changed to bisoprolol. Please try not to fret x

What a lovely message Mamabear..thank you ☺️
I am trying not to fret
your post is reassuring me a little
what symptoms were you getting before you got your diagnosis? I am sorry that quite a few of you have the condition
true about Nadolol ..we often have dramas trying to get the medication

I don't have any symptoms. I am asymptomatic. My mum never had any symptoms prior to diagnosis either. She ended up in intensive care for an unrelated issue. When she was discharged that evening she phoned me to say she thought she had passed out. Took her to the small local hospital who didn't really know what was going on and it was when she was transferred to a bigger hospital did when they found she had prolonged QT. Ours is hereditary but we think hers just reared it's ( ugly) head after all the medication in hospital. She was fitted with an ICD and has been fine ever since. I was then tested and found to have it and my children had blood samples taken from the umbilical cord at birth. 3 out of 4 boys have it. I hope you feel a little bit more relaxed today x

Thank you Mamabear, really appreciate your kindness

i rang round all the local chemists to see who had stock of the medication and then went on 111 online to request a med referral…picked up the medication at lunchtime …such a relief PHEW

I'm glad you managed to get the medication sorted out. I can imagine how worried you were x