I'm convinced I have an undiagnosed heart problem

[Alwaysworrying25]

Just that really. I'm convinced I have an undiagnosed heart condition and I'm a ticking time bomb, but the doctors don't listen to me. I've had periods for years, of heart palpitations, chest pains at rest and with exercise, breathlessness, light headedness, random episodes of racing heart to the point I feel unable breathe or move properly, which do actually fuel my anxiety. I've been to th GP many times, I've been to A & E many times. Every time they say my heart is fine but how do they know that? I had a 24 hrs holter monitor about 2 years ago, which found ectopic beats, they said every other beat was an extra bear but that this was normal and benign? But how do they know that? Without doing other tests?

I do have a history of OCD, and health anxiety and I think this is why the doctors say it's all in my head but it's really affecting my life. I'm sure something is seriously wrong and I truly feel like I'm a ticking time bomb and I'll drop dead at any moment. I'm so scared.

I looked at seeing a private cardiologist but I just couldn't no afford to do it. How can I make them listen to me and give me the neccesry tests to check my heart? I have a young son with special needs and I'm making myself sick that I'm not going to be here for him one day soon when this happens.

To add, I am overweight so I guess this does contribute to some of my symptoms and I'm working on losing weight.

Iv had all the blood tests, vitamin d, iron etc which all day sufficient. This is ongoing since my son was born so almost four years I've been having these symptoms.

Hi op,
I know you say you’ve had anxiety for many years, me too! But that could be the problem here, years of untreated anxiety, causing these newer issues with your heart!
I’ve had the same fear as you, and I was referred for an echo! If you could push for an echo that also tells them a lot!
If all that is clear I do think you need to try help for your anxiety, I know you don’t think it’s this but could medication or cbt help with your symptoms.
I had all these palpitations and racing heart after having my dc and I was convinced I had an undiagnosed heart condition and hated being alone incase anything happened to me!
As soon as I had the 24 hour heart monitor and about 5/6 ecgs and then the echo and reassurance from the cardiologist my symptoms miraculously disappeared.
Im not trying to minimise but I think go back and ask for an echo or just reassurance. Ask the questions you are worried about, what if I didn’t have an episode while wearing the monitor? Etc, As I was told that recording is checked over/listened to by cardiologist, they know what’s benign and what is more worrying try and take some reassurance from that.
I think honesty about how anxious this still makes you and perhaps they will reassure you further or send you for further testing to put you mind at ease!

I would keep an eye on it because your T4 should be in the upper third of the range. You really need your T3 testing to get a better idea. I never realised how much the thyroid affects all of your body. I was losing hair and was told it was because I was an older woman. I was 46 years old so not that old. It takes years for your thyroid to fail and I was actually told it was the menopause when it wasn’t.

My stepum had the same I don't remember which but I know she has either overactive or interactive and has to take medication for it.

Still not answering the question about would you take meds for a heart condition?

Well obviously I would. I think I struggle the most with all the meds they throw at me because I never feel satisfied with the answer or diagnosis they give me. It's hard for me to explain, if it's life threatening and I know I must do it, I guess it changes things, I don't know. I can't describe the fear that I have around the medications, it's like I physically can't do it. I start throwing up and shaking and sweating and I have a full on panic. I don't think your being very nice and actually your being quite rude. I did answer this question once already, if you look further up the thread you will see.

Why would you take medication for a heart condition but you won't take it for your anxiety?

I found the results from the holter monitor, or was actually 2022 I had it

It says

Showed sinus rhythm with rates of 61-105 BPM including ventricular ectopics, at the time of symptoms, flutters, palpitations and heart flutter at rest.

Her symptoms appear secondary to anxiety and possible GERD (news to me)

That's interesting about the GERD @Alwaysworrying25, that's also very common in people with hEDS.

OP, have you got something nice you can distract yourself with for a while this evening? Maybe with a nice relaxing hot drink? Are there any activities you like doing, or is there something entertaining you could put on the telly?

I'm trying to be distracted, I've got a show on and I'm up and down with my boy who is in bed but not settling very well. Currently sat at the top of the stairs waiting for him to drop off...

Hmmm I just googled it (worst thing, Google is not my friend)

I don't have any of the symptoms apart from easily bruising and fragile skin. I've never dislocated or broken anything (apart from my funny bone when I was 6😂)

I'm also one of 7 children, and none of them have anything like that, assuming it's genetic? We do have different parents. So they are half siblings. If it were something like that, would they not have it too?

Your siblings may or may not have it. Or they may have it and not be diagnosed.

I just want to apologise btw, because I feel like it's starting to look like I'm really pushing this angle but obviously I have no idea whether you have EDS or not, I just think it's worth investigating. And your comment about fragile and easily bruised skin just sends up even more red flags.

I didn't think I dislocated btw until I actually had a diagnosis. I then eventually realised that the seemingly random (and sometimes excruciating) shoulder pain when I turned over in bed or tried to put on a rucksack, pulled dresses over my head etc, was a result of my muscles going into spasm because I'd subluxated the joint (a partial dislocation). Same with my hip, it would (and still does) seize up randomly, which I eventually realised was a subluxation. The weird stitch-line pain when I tried to run? Rib subluxations. It can be a lot more subtle than you think.

If I were you, I would look for the other signs and if you have a lot of them you should ask for another rheumatology referral. The other thing to be aware of is that are different types of EDS. Classical EDS, for example, has a lot in common with hEDS but joint dislocations tend to be less common.

People really shouldn’t be attempting to diagnose OP with random health conditions - she already says she has severe anxiety and she doesn’t need anything else to start worrying about 🫣

In fact, I would argue that it’s actually quite irresponsible and unkind to keep telling her she probably has X, Y or Z.

Spot on @99pwithaflake. This thread is disturbing.

No-one is trying to diagnose her with anything. Some people (me included) are seeing red flags that need checking by an actual medical professional.

She’s been checked multiple times by multiple professionals who have diagnosed her with anxiety that she refuses to take any medication for.

She's also been diagnosed with gall stones GERD, fobbed of with a fibro diagnosis and has low ferritin, vit D and probably b12. All the above also need fixing. Drs are keen (particularly with Women) to diagnose anxiety and then not investigate anything else. People do have to research and advocate for themselves. @99pwithaflake it's possible the above are contributing to the anxiety.

Of course it’s possible but she still needs to take the medication for the condition that’s been diagnosed.

You're making some leaps here. She's told you she has been diagnosed with these. You are assuming the doctors are incompetent whereas she has told you she won't take meds for the conditions. She has told you she is 20 stone and won't take meds. What would you suggest the doctors do ?

Exactly. OP has several diagnoses she refuses to medicate and instead insists it must be something else, and people on here are just contributing to that rather than encouraging her to actually take what’s been prescribed to her by a professional.

Just to flip this a bit - you feel sure you have a heart condition, which is possible.
It’s also possible that it is not a heart condition, and that it is fuelled by anxiety.
At the moment, the only thing that would seem to reassure you is for a heart condition to be diagnosed.
However, we have to consider this might be impossible to confirm if you do not actually have a condition.
So, the question is, if you do not have a condition, what would you need to be able to believe and trust this?
The reason I ask is that otherwise, you are setting yourself up for a lifetime of fear if there is no proof that you would consider acceptable.

I mean this gently as I’ve been where you are physically albeit lighter, there is two things, weight and anxiety.

obesity causes a huge amount of health issues, cancer, heart attack stroke diabetes degradation of joints etc, so it’s good you’re getting this under control. It’s also good all your tests show you’re healthy and your heart is fine.

the two things you need to deal with are your anxiety and your weight. Stop focusing on a non existent heart issue, and looking for a bogey man when none exist. But do sort the weight. As it will ultimately cause your fears to come true, you’re still young, you’re healthy. So now’s the time. Your blood pressure will reduce with the weight, protecting you from heart attack and stroke and the anxiety is more complex if you can’t bring yourself to take the meds, but I would reconsider this strongly. As you don’t need to live like this.

Yes I’m rather dismayed by some of the responses egging her on.

MN (and the internet in general) can be a really dangerous place for people with anxiety and other MH issues as they can always find someone to feed their thought processes and encourage them to spiral.

Agreed. All this speculation is feeding the anxiety. OP has been thoroughly examined by cardiology and they were satisfied nothing of concern.
A rheumatologist has excluded all auto immune disease, hence fibromyalgia diagnosis (not ideal as it tends to label you as anxious)

Another heart patient here. Once you notice ectopics and palpitations you become hyper focussed and aware of them. They were there before, everyone has them but most people don't notice. No cardiologist is going to give you drugs for ectopic beats. You need to learn to ignore them, lose weight and exercise. Exercise is good for the heart and even patients with real, serious heart conditions are encouraged to execise.