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.

If you choose to be unmedicated then of course you are going to be anxious. I can't understand why you would do this when it is causing you so much mental anguish? Also there is a huge difference between being slim and 20 stone. I would think there is a high correlation between your weight and the issues you mention. You seem to disregard this however and maybe this is why you are getting what you feel is a lesser experience with your doctor. You're vastly overweight and won't take meds. Maybe they feel what more can they do except send you for expensive tests when you are not cooperating with them in steps to try to alleviate this?

What were your ferritin and b12 levels?

Blood pressure is spot on. Ferritin and b12 both low end of ‘normal’ 🤷🏻‍♀️

OP it's highly likely that the waking up gasping for breath is sleep apnea. Do you snore?

Have you reached out to the BHF? Sorry if you’ve said you have, I haven’t read the full thread.

Friend has this, also overweight. She has had the overnight monitor fitted or one to wear for a bit and it records what your heart does. Sorry not very technical. It didn’t show anything, she’s now having procedure where they put dye in and go in through the groin.

I’ve had a permanent cough in the past, I was in my twenties and I had an ECG, X-ray and ultrasound. I’ve got a slight valve regurgitation.

No I haven't. I didn't know that was a thing.

I don't snore, well I don't think I do 😂 it's not very often, just occasionally.

My ferratin was 25 (I've had low in the past, at one point it was 6) they said it's fine now. I don't remember my b12 and my vitamin D was 25. The last bloods I had were about a year ago.

No no, please don't misunderstand. I know I am very overweight. This is the heaviest I've been. A weight gain ot around 40lbs in a year. I don't know why. But iv never ever been slim. I know that this will be contributing to my issues. I have been trying to loser weight with calorie deficit and moving more. I have OCD and a diagnosed anxiety disorder. I struggle with meds fory anxiety. What I'm experiencing is NOT anxiety related. I've had an anxiety disorder my whole adult life and I know what anxiety Vs what I've been experiencing over the years feels like. They've done nothing to try and alleviate the concerns I have with my heart etc they did the holter and the EKG and said all fine. Despite ongoing issues. Now they don't believe me and say it's all iny head. I know it's not.

I had this when switching antidepressants or whenever I've reduced. Withdrawals can last months or even years in some people. Could you have protracted withdrawal syndrome? It's a thing.

No, I haven't been medicated for my mental health for a long time. Partly due to fear and partly due to the ones I have tried weren't a good fit.

You dont always snore with sleep apnea @Alwaysworrying25 it would be with asking for a sleep study to be done.

Your ferritin is way too low at 25. Guidelines now say less than 30 should be treated but it needs to be at least 70 to be optimal.

I don't know your vit d range but 25 - 50 nmol/l is inadequate and needs supplementing probably with a loading dose first.

I suspect your b12 is also not optimal going by the above worth also getting folate tested. All the above can cause symptoms.

Worth asking about POTS and also MCAS for the palpitations and an echo.

I asked about pots and they said because sitting and standing bp was the same that it couldn't be that.

Does your heart rate change sitting to standing? Bp often stays the same. Can you see a different gp or ask for a second opinion?

Can you link symptoms to previous infections e.g. covid is known to increase the risk of developing cardiac problems and increased risk of heart attack even years after infection, however mild the original infection was. POTS also can be caused by a covid infection.

British Heart Foundation has material on this which, if you think covid brought on or worsened your symptoms, you can use to advocate for yourself.
https://www.bhf.org.uk/informationsupport/heart-matters-magazine/news/coronavirus-and-your-health/what-does-coronavirus-do-to-your-body

Also do you wear a smart watch that tracks your heart rate? If you can capture your sudden jumps in HR in the tracking app, to show to doctors, that could be useful.

I have never linked it to COVID etc but it all became much more prevalent after I had my son. So I've been linking it with after having a baby.

I don't wear one, no, but only because, I would he obsessively checking it and reading it. It would make my anxiety worse.

I'm sorry if this seems super obvious but have you tried completely quitting caffeine? I had trouble for a couple of years with racing heart, skipped beats, waking with my heart pounding, heart rate alerts from watch. I do have anxiety but this felt different, more physical. I thought it couldn't be caffeine because I really didn't have much, but then I quit completely after a long time of just cutting down and the problem is just gone.

I have cut down. I drink decaf coffee and mostly decaf tea.. I don't really eat chocolate and I sometimes have pepsi max or something like that. On the odd occasion I do hav a coffee I immediately feel the difference. It makes me feel rough. So I'm deffo sensitive to caffeine and have taken steps to minimise that.

Gently OP how can you be so worried about your heart that you’ve been to the gp and A&E many times but you’re morbidly obese?

You could have an absolutely perfect heart put in you but being morbidly obese will kill you faster than anything else.

Your weight puts pressure on your heart - so of course it’s going to be working overtime.

Anxiety also affects your hearts rhythm.

It may be that your heart is actually ok but it’s your weight and anxiety that are making things worse.

You say yourself that you’ve had checks done. If there was anything big then they would have picked up on it.

If you do have a heart problem the first thing you’d have to do is lose weight anyway and so this would be my only focus.

Once you’re at a lower weight than your heart will start working normally again - if it doesn’t then the doctors will take you more seriously.

Most things are weight related but even when they’re not doctors will blame your weight (I know from experience).

Its like smoker needing an asthma pump - yes they could still have asthma but they need to stop smoking to see if it’s actually asthma or just dirty airways.

I lost weight by:
-tracking calories every day on my fitness pal (even if I made bad choices).

-reducing my carbs and upping protein - I’d base my meals around protein eg breakfast= 1 slice of toast with 3 scrambled eggs, lunch=tuna salad, dinner=chicken breasts and mixed veg. Snacks were things like sugar free jelly, popcorn, 1kitkat etc.

-sleep! - going to bed as easily as possible eg 8pm and reading. Then having an early night to get a good 8 hours in - if you’re in bed you won’t be snacking and a lack of sleep is proven to be linked to weight gain.

-walking - don’t worry about killing yourself with exercise as what you eat and your sleep are more important for weight loss. But to destress I found putting my headphones on and going to a walk in nature makes me feel incredible and I’m less likely to comfort eat plus if I’m walking I’m not eating and I’ll be burning a few calories too.

Even just getting your weight down a bit will have them take you more seriously.

But remember that you’ve had checks and nothing has been picked up on - there is nothing immediately wrong with your heart.
If there is something it’s probably small and won’t affect you until you are older.
So you do not need to worry about it now.

Low iron gave me all those symptoms and as another poster said yours is too low. GPs always dismiss low iron/ferritin in women and tell them it's normal when it isn't, you'll find numerous Facebook groups and threads on here about the same thing. Go back and insist on iron tablets or an infusion.

Thank you.

I've been trying to lose weight for months and months, I lose a big amount and then it creeps back on again. I know what I need to do. And I do know that my weight is affecting me. It's so hard to lose it. I used to be really really active and walk miles and miles but now I'm too scared, even brisk walking, send my heart beating out of my chest, then I panic and it's a vicious circle.

I've used food as a way to cope over the years, I'm a very emotional eater. I know that's what's made me gain all the weight mixed with being so scared to excercise.

I was told that because my actual iron in my blood was fine, it didn't matter as the ferratin is only the stored iron? After I hady son, I was very anaemic and I had iron tablets and I remember the bad chest pains I used to get kits going up the stairs. It was horrible. I do get similar now.