[Help] Long QT Syndrome.

[Psychobilly freakout]

So after going to the doctors with dizzy spells, I did had my bloods taken and I am pre diabetic which can be reversed I think.
I also did the blood pressure thing over a week and I had an ECG, I got a text asking me to call and book an appointment with the doctor to discuss the results in three weeks.
Anyway I had an appointment today to see the Nurse about diabetes, prevention etc and I mentioned the text and I would book the appointment on my way out.
She actually did my ECG test and sent the results off to the specialist for the doctor, she quickly looked at my notes and asked me a few questions I had already been asked and said that the I should have had a message to book another appointment about my ECG results as well as the blood pressure test again.
She said due to my grandad dying of heart attack at 58, and my dad having a stroke in his 50s and the what they think they see in the ECG results, requires another appointment and could possibly be Long QT Syndrome, and this may have developed late and now become more prominent due to stress and anxiety etc.

I do not want to panic, or worry the wife etc so will wait and see after my appointment next week.
Basically it is a death sentence at the moment in my head, but driving to work carries a risk.

Any advise ?

 

[AmexRuislip]

First thing is to tell the Mrs, as I can assure they'll work out something is wrong.

If you're not happy with the way things are being dealt with, keep in regular contact with the appropriate NHS services.
Believe you me, I know this from experience.

Long QT syndrome

Long QT syndrome (LQTS) is a rare condition that affects up to 1 in 2,000 people. The condition is often inherited but can be caused by other things like medications.

www.bhf.org.uk

Good luck mate.

 

[Thunder Bolt]

Definitely tell your wife. At the moment, you are being monitored rather than receiving a definite diagnosis.

 

[Psychobilly freakout]

Definitely tell your wife. At the moment, you are being monitored rather than receiving a definite diagnosis.

True, which is why I will not tell her, as she is somewhat cold, and if it is not QT will only say I am being a hypochondriac and seeking attention.
It took a lot for me to go to the doctors anyway, so I know I am not.

She has a stressful job as well and I don't want to add to her heap.

 

[Herr Tubthumper]

So after going to the doctors with dizzy spells, I did had my bloods taken and I am pre diabetic which can be reversed I think.
I also did the blood pressure thing over a week and I had an ECG, I got a text asking me to call and book an appointment with the doctor to discuss the results in three weeks.
Anyway I had an appointment today to see the Nurse about diabetes, prevention etc and I mentioned the text and I would book the appointment on my way out.
She actually did my ECG test and sent the results off to the specialist for the doctor, she quickly looked at my notes and asked me a few questions I had already been asked and said that the I should have had a message to book another appointment about my ECG results as well as the blood pressure test again.
She said due to my grandad dying of heart attack at 58, and my dad having a stroke in his 50s and the what they think they see in the ECG results, requires another appointment and could possibly be Long QT Syndrome, and this may have developed late and now become more prominent due to stress and anxiety etc.

I do not want to panic, or worry the wife etc so will wait and see after my appointment next week.
Basically it is a death sentence at the moment in my head, but driving to work carries a risk.

Any advise ?

The only advice I can offer is to talk now to Mrs Freakout. It will be best for both of you; it really will.

Good luck with this and the illness.

 

[Thunder Bolt]

True, which is why I will not tell her, as she is somewhat cold, and if it is not QT will only say I am being a hypochondriac and seeking attention.
It took a lot for me to go to the doctors anyway, so I know I am not.

She has a stressful job as well and I don't want to add to her heap.

Fair enough as you know her better than us. I know, if it was me, I would want to know, but then again it isn't me. Thanks for explaining.

 

[timbha]

I really think you should discuss it with your wife, even if you have to first tell her that you weren’t going to tell her and why.

If you don’t say anything and she subsequently finds out she may always be wondering what else you haven’t told her (that you have shared on social media).

Good luck. Early diagnosis always gives you an advantage.

 

[Icy Gull]

As it’s potentially serious you 100% need to discuss it with your wife imo. Do you have a record of being a bit of a hypochondriac? If so it could explain you thinking your wife is a bit cold.

Hopefully it’s not serious

 

[Psychobilly freakout]

Do you have a record of being a bit of a hypochondriac?

Hopefully it’s not serious

Nope, I have been to the doctors once before lockdown and before that I went once as teenager.

As i say it took a lot for me to go, anxiety knowing something was not right.

The wife had a tuff similar to me upbringing, I don't want anyone thinking she is cold hearted, she is very matter of fact, do it, don't moan about it, not much emotion when relatives have died, a lot like me to be honest.
I know it is odd posting on here, but my mates are miles away, some of them have their own issues, and I am not that close with anyone to be honest.
I get on well with my two half brothers, but I am not telling them yet until I know for certain, as it will mean they will have to get tested and their children as well. I don't want to worry them.

Nothing is certain, I was just seeing if anyone else had any information or has been affected by it.
Thank you NSC as always.
x

 

[trueblue]

Only you know what’s best in the family situation. If you need someone to talk to, could you perhaps schedule a phone appointment with a GP and explain your worst fears? S/he might be able to help you make sense of it a little. You won’t be wasting their time. It’s what they do. I think it’s really important to remember they’re only investigating at the moment. They’ve given you the reason for that, rather than a diagnosis. Try to take it step by step and deal with the realities as they arise. I know a few people with irregular heartbeat and it can have a variety of causes. Many of them not dangerous and very treatable/manageable. On the positive side, it’s good that you’ve taken action on this now so the specialists are able to help,

Good luck pal.

 

[BN9 BHA]

As others have advised I would tell your wife. Wish you well.

 

[zamora the merrier]

Also it is the nurse saying this is a possibility not a doctor or consultant. I had a similar experience with a nurse (clearly trying to be helpful) telling me is was probably one thing however when I saw the consultant it was something far less serious and easily treatable! Hoping it is the same foe you
Good luck in any event

 

[Psychobilly freakout]

Also it is the nurse saying this is a possibility not a doctor or consultant. I had a similar experience with a nurse (clearly trying to be helpful) telling me is was probably one thing however when I saw the consultant it was something far less serious and easily treatable! Hoping it is the same foe you
Good luck in any event

Yes true, although she was reading the notes, that mentioned QT and considering my family history etc, I need to see the specialist and book an appointment (the doctor had not done this)

 

[Zeberdi]

Hi PF, Sometimes it’s hard to talk ti someone when you think they might not be sympathetic but until you know anything for sure your wife sounds like the perfect down to earth balance to your anxieties about your health at the moment - as you know, anxieties can actually make some health conditions worse, so if nothing else, telling her could have a positive effect on your health.

I really get the fear though and not wanting to worry family members - I recently had a CT angiogram and have several indications I could have a potentially fatal heart condition showing up on the CT and any high level exertion/exercise could be a death sentence (I also have developed severe fatigue and breathless and now awaiting an echocardiogram to get a firm diagnosis so what ever is going on is quite advanced). I know there’s no point in saying ‘don’t get stressed about it’ or ‘it’s probably nothing’ but in my experience (I also get health anxieties) it has helped to share my concerns - I have not told my Mum (because she is very elderly and ill herself and I don’t want to worry her) but have spoken to my sister and a couple of close friends which effectively talked me down off the ledge of thinking g*d what else am I going to be diagnosed with! Once I had told them about my CT results though, the fears I had subsided a bit and I have a much more grounded attitude - That’s the effect of telling someone else IRL (ie cf to a social media post) - it helps put your fears into perspective so they don’t completely take over your thinking.

The most helpful thing my sister said to me last week when I told her, was that ‘it’s amazing what the NHS can do these days - most conditions are treatable and if not curable, significantly prolong life’. I wish you all the best whatever you decide and until you know more, hope you can push through the anxiety while you are waiting.

 

[Psychobilly freakout]

Hi PF, Sometimes it’s hard to talk ti someone when you think they might not be sympathetic but until you know anything for sure your wife sounds like the perfect down to earth balance to your anxieties about your health at the moment - as you know, anxieties can actually make some health conditions worse, so if nothing else, telling her could have a positive effect on your health.

I really get the fear though and not wanting to worry family members - I recently had a CT angiogram and have several indications I could have a potentially fatal heart condition showing up on the CT and any high level exertion/exercise could be a death sentence (I also have developed severe fatigue and breathless and now awaiting an echocardiogram to get a firm diagnosis so what ever is going on is quite advanced). I know there’s no point in saying ‘don’t get stressed about it’ or ‘it’s probably nothing’ but in my experience (I also get health anxieties) it has helped to share my concerns - I have not told my Mum (because she is very elderly and ill herself and I don’t want to worry her) but have spoken to my sister and a couple of close friends which effectively talked me down off the ledge of thinking g*d what else am I going to be diagnosed with! Once I had told them about my CT results though, the fears I had subsided a bit and I have a much more grounded attitude - That’s the effect of telling someone else IRL (ie cf to a social media post) - it helps put your fears into perspective so they don’t completely take over your thinking.

The most helpful thing my sister said to me last week when I told her, was that ‘it’s amazing what the NHS can do these days - most conditions are treatable and if not curable, significantly prolong life’. I wish you all the best whatever you decide and until you know more, hope you can push through the anxiety while you are waiting.

Thank you for your wise and kind words, I wish you all the best.
It sound pretty similar to what they are saying i could have, QT syndrome and I am incredibly tired, and get out of breath easily, this has happened over several years and I have been putting it off, but actually I have been going through old photos and doing the family tree, and I thought a month ago, god grandad died young (before i was born) and so did this one, and that one, and that one.
That is when I thought you know what....

 

[PILTDOWN MAN]

Thank you for your wise and kind words, I wish you all the best.
It sound pretty similar to what they are saying i could have, QT syndrome and I am incredibly tired, and get out of breath easily, this has happened over several years and I have been putting it off, but actually I have been going through old photos and doing the family tree, and I thought a month ago, god grandad died young (before i was born) and so did this one, and that one, and that one.
That is when I thought you know what....

You've done the right thing though. When your family members died there wasn't the medical procedures available that are today. Also thanks to people like HWT more and more drugs are available.

 

[Super Steve Earle]

I'm no judge, but you know best about telling the wife. My son's mother in law was told the week before Christmas that she had 3 to 7 years to live due to a lung disease. Follow up after Christmas 'I don't know why you were told that, your lungs are fine'. If your wife won't be sympathetic (although she may surprise you) plough through the process, hope for a better outcome, then tell her when you know for sure. At least you can talk to us on here

 

[knocky1]

Good luck mate. Good it's now being investigated.
Just learnt how to give CPR last week after a friend was diagnosed with atrial fibrillation. Beneficial if NSCers spent 10 minutes checking it out.

Learn CPR in 15 minutes for free with RevivR™

Learn to do CPR and use a defibrillator in just 15 minutes on your mobile phone or tablet. Many of us will witness a cardiac arrest in our lifetime. Be ready for that day.

www.bhf.org.uk

 

[Cheshire Cat]

True, which is why I will not tell her, as she is somewhat cold, and if it is not QT will only say I am being a hypochondriac and seeking attention.
It took a lot for me to go to the doctors anyway, so I know I am not.

She has a stressful job as well and I don't want to add to her heap.

She'll be even more stressed if you suddenly keel over without warning for no apparent reason. Ambulances can take a while* to arrive.




*several days