Heart issues being dismissed

[Myacheybreakyheart]

I really sorry for using AIBU but wasn't sure what health topic to post in (if anyone can send me in the right direction I'll get it moved)

Have had problems with heart palpitations etc for a long time. Constantly dismissed as anxiety but after ending up on the kitchen floor in the middle of the night when DS was newborn I got referred for a 24hr ECG. Was never contacted so assumed all good. Later told I have an arrythymia. Nothing to be concerned about. All good.

Since then I get palpitations and cope fine, but know coffee or too much alcohol will send it crazy.

The last few days I've been having terrible palpitations. Two nights ago I really thought I was a goner. After it didn't calm down I spoke to GP who brought me in for an ECG (was on for about a minute) and said all looks good.

We have a history of heart problems in the family. My DGGM lost two siblings in childhood to rheumatic heart disease. She was unable to join part of the army in WW2 due to her heart problem (unsure what that was). All the women in our family have palpitations or arrythymias etc. My maternal GF died suddenly of a heart event a month ago.

I've only just found out it was rheumatic heart disease that my DGGM's siblings died of and have done some googling (I know!).

I suffer from psoriasis. Had two big flare ups after two throat infections (assumed tonsillitis both times but now wonder if it was strep having done a lot of reading during flare ups) which lead to 4 months of being head to toe. Have been seen my dermatologist but no scrapes done. Having looked online just now and the lasting and different patches on my wrists and elbows I assumed were eczema look very much like rheumatic fever rashes. Admittedly could just be eczema but equally I was astounded when I googled how similar they look.

Am I being ridiculous to put a load of different pieces together and wonder if I have in fact had strep (untreated - due to Covid) and that's lead to my heart worsening and left me with these raised scaly patches?

No doctors are taking me seriously when I speak to them about my heart but it's been ongoing for many years now and is particularly bad at the moment. It could be nothing, I'm aware, but it's enough to scare me, and given the history and my skin issues would it be unreasonable of me to really fight for an echo or something as opposed to a quick ECG when I'm not having an episode of the heart palpitations or whatever they are? I've had bloods done recently (not due to psoriasis) and vit B9 was low so on supplements but all was fine otherwise.

I'm aware this truly could be nothing, and I don't know if this limited ECG could detect anything and everything but equally I am a bit scared, and equally frustrated at being shoved off with anxiety as an explanation. I'm just after some advice as to whether I should be pushing/could be on to something/need to chill out.

Ask for another 24 hour ecg and a 24 hour blood pressure monitor. Although, don't hold your breath that anything will happen anytime soon. I have had my cardiology appointment rescheduled 4 times so far this year. If you are in the mist of an episode and you think you are going to die then maybe you should go to hospital. At least they will investigate.

Do you see a consultant for your Psoriasis? If not, you need to be referred to get on a decent treatment pathway - it could also help your anxiety as uncontrolled inflammation can have an effect upon mood and emotions purely unconnected to any mental health; it's the number one warning sign of an impending flare with mine.

A work colleague suffers with this. She completely avoids alcohol and caffeine. She drinks a glass of water to alleviate her palpitations, they mostly occur at night. She’s been fitted with a heart monitor /recording device over night (sorry not sure of name) to record her heart palpitations.
Have you had an ultrasound of the heart?

Hi OP,

Personally I would keep pushing. Not because I think you have a serious arrhythmia but because you need peace of mind. Also, because these palpitations sound like they are affecting your day to day life.

Stress your family history to the GP and the fact it's on the female side. And stress the fact they are having an impact on your daily life.

My DH, 34, recently had an ablation of the heart for an arrhythmia and it has completely cured it. Not saying you'll need this, just saying I understand your stress of being heard.

Best of luck and take care!

It’s interesting that you think that a diagnosis of anxiety is ‘being dismissed’.
Health anxiety is a genuine condition. You’re googling everything and despite your GP testing you, you still seem to think you’ve got something serious wrong with you. I think you can safely say that deaths from 3 generations ago may not have been as accurately recorded as they are these days - my grandmother who was born in 1904 was one of 14 children and half of those died of some kind of rheumatics according to their death certificates. It was very very common - mainly as a result of dreadful living conditions and poverty combined with poor or non existent health care.
When you have had consultations with your GP, have they discussed health anxiety? Have you told them how anxious this is making you? I would assume that if they could find signs of heart abnormalities they would have referred you to a cardiologist.
I know that being anxious about your health is awful, it does actually cause real physical symptoms and thus you enter into a vicious spiral of being unwell, seeing the GP, feeling dismissed and on and on.
I hope you get some resolution to how you’re feeling.

Dysautonomia (usually PoTS) causes heart palpitations and is linked to Mast Cell Activation Syndrome which causes allergy-like responses including rashes, and is triggered by alcohol and caffeine. Both conditions commonly follow a virus and run in families, usually in the females.

I am a man with a hammer and everything is a nail, but so many times I open these threads and the unexplained puzzling symptoms are always the same. Have a look and see if the symptoms of PoTS and MCAS fit. For MCAS you only need to be affected in two systems, ie dermatitis & gastro, not all of them.^^

Unfortunately Cardiologists who are experts in dysautonomia are hard to find. Unless you are lucky enough to live near one, it means paying for private or asking your GP to refer you out of area which some CCGs don't allow. The PoTS UK website has a list of specialists so start there.

MCAS is even harder as there are no specialists on the NHS, and all the private ones have closed their lists because Covid has caused a huge wave of upset mast cells. But mostly it's successfully managed with a variety of antihistamines and a low histamine diet. If you try taking antihistamines and they help with the rashes, that would be an indication that it's that.

Well done @BonnesVacances I never have the energy to explain it all

Good luck Op getting to the bottom of it. I know how hard it is to have so many symptoms & not be taken seriously.

And yes, like a pp helpfully raised, they'll be plenty of 'health anxiety' suggestions. 🙄

Agree re pots. It took two and a half years of me being told I was anxious and to calm down before I paid privately to see a neurocardiologist and finally got on the path to being diagnosed. It's disgraceful that women especially are still being dismissed as anxious when they are having physical health problems. My tilt table test was used as a teachable moment in the hospital as it was rather dramatic. Clearly not bloody anxiety!!!

The same thing has happened to me over and over again. 7 years ago I was told my severe joint pain, fatigue, brain fog etc was depression and anxiety. It is Ehlers Danlos Syndrome (diagnosed after 3 years of begging for help). Last year I was repeatedly fobbed off about my migraines, vertigo, nausea, cognitive decline. Turns out it's a chiari malformation (brain being squeezed into the space where the spinal cord sits). In my teens I was fobbed off about my periods, and hormonal problems. Took forever to get the PCOS investigated, was told to just get on with it, that it's normal to bleed so heavily etc.

I'm so angry that women everywhere are treated like this!

I would absolutely recommend Dr Nicholas Gall if you do decide to go private (you can then hook into the nhs for tests). He is absolutely brilliant. He has really helped me understand pots, and has looked at me as a whole person taking into account my other illnesses and is really trying his best to give me a better quality of life. He is so knowledgeable about pots and so much more, and how the different conditions are related to each other. Honestly if I hadn't gone to see him I think I would have given up on life by now as I felt totally hopeless.

I was diagnosed with severe atopic beats last year. Had bought myself a smart watch with ecg . Was able to print off and send ecg into g.p who referred me on for 24 hr tape. Tape and ecgs correlated . Also a psoriasis sufferer and recently diagnosed with folate anaemia which can add to the symptoms.

Whats strikes me from your family history is that your relatives had rheumatic heart disease.

While there are many elderly people around today with valve problems as a result of having rheumatic fever as children, it isn't a hereditary condition and rheumatic fever today is incredibly rare.

So what to you looks like 'all the females in my family have heart disease' to doctors looks like 'there is no hereditary heart disease in your family and you are worrying about a condition that is now almost unheard of in the UK and only affects under 16s anyway'.

Have you got your psoriasis under control and do you see a dermatologist for that? If your skin is more inflamed then whatever you are doing isnt working and needs a step up.

@AnnaMagnani

Whats strikes me from your family history is that your relatives had rheumatic heart disease.

While there are many elderly people around today with valve problems as a result of having rheumatic fever as children, it isn't a hereditary condition and rheumatic fever today is incredibly rare.

So what to you looks like 'all the females in my family have heart disease' to doctors looks like 'there is no hereditary heart disease in your family and you are worrying about a condition that is now almost unheard of in the UK and only affects under 16s anyway'.

Have you got your psoriasis under control and do you see a dermatologist for that? If your skin is more inflamed then whatever you are doing isnt working and needs a step up.

Well yes, but uncontrolled inflammation from an autoimmune condition resulting in cardiovascular events isn't.

Which is why the OP needs to be seen in Dermatology. It's not just skin that gets 'inflamed'. It's a whole body/systemic condition that has other risks.

I keep my palpitations under control with Propranolol, magnesium and avoidance of caffeine and sugary foods.

I suspect I have dysautonomia and mast cell activation because of multiple allergies, hypermobility, palpitations and generally feeling unwell a lot of the time. I can't access help.

Thanks all, and sorry to hear about everyone else's problems with their heart. I have wondered about PoTS before as my heart rate seems to jump from resting at around 60/70 to sometimes up to 120 when I get out of bed.

I understand people saying about anxiety, but it's not anxiety. And it may just be palpitations, but as others pointed out, I do have a condition that causes inflammation throughout the whole body. And I do have an issue whereby my heart is doing something, and it concerns me.

My Psoriasis has been mostly gone for about 4 months now thankfully. Throat infections seem to be my big trigger. I am under a dermatologist but haven't been seen since September as it's calmed. I need to book another appointment so will bring it up at my next one.

You can do an active stand test for POTS & there are YouTube videos. If you have a fitbit you can record your heart rate on the app & show to GP.

Well the diagnostic criteria for pots is a rise of over 30bpm on standing, so it sounds like you are part of the club!!

I have a heart arrhythmia that was recently diagnosed after being repeatedly dismissed after having non eventful ECGs.

My GP recommended a device called a Kardia which was around £100 from Amazon. I was able to record my own ECGs when I had an episode and show it to the doctors. It was only being able to show this that I was referred to cardiology. If you can afford it I would highly recommend it. It has really helped me understand my condition.

Have you looked into Psoriatic Arthritis?

Your heart rhythm issues sound like they do need through investigations due to your family history.

You said you were diagnosed with an arrhythmia - which one?

Hi @PartyPlan I've seen these Kardia ones and after a day of really not feeling great with it all I am seriously debating it. Do you have the 6 lead or the one lead? Wondering if the 6 lead is worth an extra £50.

@RandomMess I had a thorough blood test in Jan and all those came back fine with no indication of PsA which was reassuring. I just feel like an idiot at the doctors now. I know they think I'm a hyperchondriac but something isn't right with me, and hasn't been for some time.

@TatianaBis honestly I have no idea! I had the 24hr ECG and was never contacted until one Dr said I did have an arrythymia but it wasn't problematic and that was that.

For PsA the blood tests are only screening for inflation levels, there is no diagnostic blood test unlike with RA.

I get them from caffeine, doesn't take much, one cup of proper coffee.

Technically tachycardia is an arrhythmia so it might just be confirmation that your heart is a bit fast. If they say it’s not “problematic” that should be reassuring.

I just have the standard single lead one which has been sufficient. After many episodes the cardiology team have fitted me with a loop recorder under my skin that records my episodes and sends them to the hospital so I only use my Kardia for my own monitoring.

That's interesting @RandomMess. I am hypermobile according to osteopath friend and have suffered with pain in my knees off and on, and have also noticed a huge decrease in my wrist strength in the last year or so. Whether they're indicators of anything.

I really am at a point where I've got a range of strange symptoms that come and go and I don't really know what to think anymore.