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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Aibu to worry about whether i have a genetic heart condition

18 replies

yarncakes · 13/09/2020 22:19

I have anxiety so that is not helping but I'm starting to wonder whether heart conditions run in my family. My grandmother died of ischaemic heart disease before she was 70, and my sister died from a sudden heart attack before she turned 40. My mum already passed away but not from a heart condition. I am 30 and I am starting to worry this is going to happen to me. I have looked into getting genetic testing but is there any point? If I know I have it, what can I do about it? During this covid going on I doubt I am even going to get genetic testing at all let alone get treatment for it if I do end up having it. I have never smoked, I'm slightly overweight, but I keep fit and healthy as I am in a physical job, my oxygen is 99 and my heart rate is always between 40 and 60 bpm which I was told was normal for someone who is fit. Sorry this is a rant but I am getting a bit scared.

OP posts:
lljkk · 13/09/2020 22:21

Your anxiety is making you think this is important to find out.
Your anxiety isn't sensible and shouldn't make decisions for you.

Like you said, you can't do anything with the information, either.

mrsmarkgruffalo · 13/09/2020 22:25

I would have thought they'd just check your heart first rather than genetic testing. Sorry about your sister Flowers It sounds like you've been through a lot. Is there a number you can ring for British Heart Foundation maybe for advice? or ask the GP about genetic conditions. They can do things if they thought you had one, eg drugs, so it's worth getting checked if you are worried.

user165423256322 · 13/09/2020 22:28

I think you'd normally have to receive counselling as part of genetic testing for something like that, wouldn't you?

Have you had / are you having any kind of counselling or therapy for your anxiety? I can see how that history would cause distress and anxiety, so I guess it's a case of what to do about it and how to manage it rather than trying to suppress it.

Looking at genetic testing is a way of feeling like you're doing something and taking control?

Sunshinegirl82 · 13/09/2020 22:35

My Dad died from complications arising from a heart condition. My GP referred me to a cardiologist for tests and I had an echo and a chat with the cardiology team. They found no abnormalities with my heart which was reassuring! My sister was also investigated and she was also fine as far as they can tell.

I'd be inclined to follow it up, have they told you there is nothing they can do if there is something genetic? Or is that your assumption?

MilleniumHallsWalledGarden · 13/09/2020 22:42

This is a link to some information from the British Heart Foundation for people with a family history of heart disease www.bhf.org.uk/informationsupport/risk-factors/family-history

Fanciedachange1 · 13/09/2020 22:45

I would speak to your GP. They can then refer you to a cardiologist if they think this is necessary who can then send you for the relevant tests.

Currently due to the Covid situation you may be in for a bit of a wait but if it’s something you want doing you might as well get the ball rolling now.

Fwiw it’s common for “fit” people i.e athletes to have a HR lower than 60bpm but 40bpm isn’t that common amongst the general public with no further investigation needed.

froggygoneacourting · 13/09/2020 22:51

Like you said, you can't do anything with the information, either.

This is dangerous misinformation.

There are plenty of genetic heart conditions that can be monitored so that problems can be discovered and treated when they first appear. Plenty of defects can be treated either with medication or surgery.

In my family we have a rare genetic heart condition called Vascular Ehlers Danlos Syndrome. Discovering this made me choice not to have children. An immediate family member also discovered he had an aneurism (people with VEDS are prone to developing aneurisms) which if caught early enough can be operated on, although the surgery is high risk.

I have to go through regular monitoring so they can catch blood vessel problems and try to fix them before they become life threatening. Without that genetic knowledge these issues would grow silently and asymptomatically until they turned fatal, which is what happened to my parents and grandparents.

OP, if you’re worried absolutely talk to a doctor about genetic screening. I might be dead now without it.

yarncakes · 13/09/2020 23:01

Thank you all. I do think my anxiety is definitely not helping and it has manifested so much this year due to covid. I did get help many years ago with counselling but I didn't find it helpful. I don't take medication as I have health anxirty I have anxiety about side effects.. Its ridiculous I know but that's just my world unfortunately. I do wish I didn't worry the way I do. I will look into it and go from there. I still worry about my other siblings as well but it doesn't seem to bother them as much as it does me. My brothers are like when it's our time then it's our time. Very helpful Grin

OP posts:
rosiejaune · 13/09/2020 23:41

If there was no identified genetic issue in either of your close relatives who died that way, they would have no reason to test you. And no idea what to test you for, anyway, as there are loads of potential mutations increasing the risk of heart disease (most of which will still not kill you if you are sensible).

The two incidents were probably unconnected, but even if they were related, it's more likely they were connected by circumstance than genetics.

The best thing you can do is live healthily (decent exercise, self-care, plant-based wholefood diet and supplement e.g. B12/D/K2), which includes addressing your anxiety.

Someonesayroadtrip · 13/09/2020 23:53

It's your health anxiety taking. To start with you need to understand that even if you have heredity heart conditions in your family then it doesn't mean you will have those markers and even if you have those markers that doesn't mean you will get it. It means you're at risk of it. Which you can do things to reduce that risk.

Given your grandmothers age then it doesn't seem a strong factor but your sister is more concerning as to your risk level. I think when you lose a lot of people it makes you much more aware of your own mortality.

You're also only 30 which means it's a great time to look at things to reduce your risk factors. The less risk factors the less chance even if you carry a hereditary risk factor.

Does that make sense? Even if you were at risk, it's just a risk and there are plenty of things you can do to reduce that risk. Sometimes people who know they are at risk are in the better position because they do things to reduce other risk factors. Some conditions you have little control over but in this case you do. Again, not saying that you would be at risk but might be worth getting testing given your sister.

Good luck OP

underneaththeash · 13/09/2020 23:59

I'd be a bit concerned too. Was your sister very overweight/have other health issues?

Most important thing is to lose weight, eat healthily (do not though go down the vegan route) eat a range of fruit, veg, plant and animal based proteins and also get a cholesterol test to rule out a trait to a high cholesterol level.

PickwickThePlockingDodo · 14/09/2020 00:07

Can you afford to get a private scan done? I would do this if you can to put your mind at rest.

I agree with froggy Of course there are things that can be done if you find out you have a heart condition.

My DS had a successful operation and it solved one problem but has ongoing issues that are being monitored but it's always better to know.

It's probably nothing OP but always worth checking.

TheVanguardSix · 14/09/2020 00:21

www.c-r-y.org.uk/

Get screened OP. You have a family history. You can use the CRY service if you are between ages 14 and 35.

yarncakes · 14/09/2020 07:12

Thank you all very much. My sister had an autopsy done and they couldn't find any abnormalities or defects within her heart so I am assuming that means she didn't have any, it just happened unfortunately. Thank you for referring me to the CRY website I remembered that from before. However it looks like their screening venues are closed due to Covid..a massive shame.

OP posts:
yarncakes · 14/09/2020 07:19

No she wasn't overweight at all, in fact she was underweight.

OP posts:
lljkk · 14/09/2020 07:56

If autopsy didn't find anything wrong with OP's sister, then a special scan or examination from cardiologist is unlikely to find OP has the same condition as her sister (if her sister even had a condition). So the sister's fate seems irrelevant. OP can't use the information to do decide what to do.

If that is a dangerous point to observe, then so be it.

yarncakes · 14/09/2020 08:11

I did think this but what about my grandmother who had ischemic heart disease? I am looking on CRY website and it says that I should get tested on the basis of that.

OP posts:
sashh · 14/09/2020 08:12

I'm assuming your sister had a cardiac arrest rather than a heart attack as a heart attack would show on an autopsy.

Ischemic heart disease and cardiac arrest are not normally related. If you think of your cardiovascular system as a central heating system then IHD gradually blocks the pipes until there is a complete blockage - that's when a heart attack occurs (and if the blockage stops the 'wiring' working then it can be a cardiac arrest) but there are treatments to 'deblock' the pipes.

A cardiac arrest is the electrical wiring stopping working.

It is highly unlikely the two conditions are related and although it is tragic it doesn't mean there is a genetic or inherited defect / disease.

Please go talk to your GP, you can be referred to a cardiologist for testing and reassurance.

You might also find it useful to see a genetic counsellor. I have a number of relatives who have had breast cancer, but the counsellor went through my family tree and discussed the types of cancer and the likelihood of there being a genetic component.

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