How do I get a takotsubo disgnosis?

[DebbieSomerset]

Hello,

I have been experiencing chest pain and palpitations for about 10 weeks. I have been to A and E with severe chest pain, and have had blood tests and ECGs which all showed no sign of a heart attack.

I have continued to have daily discomfort with mild chest pain/tightness and a feeling as though it ought to be hard to inhale deeply, and as though there is pressure on my chest. I have daily palpitations during which the pulse rate on my Fitbit becomes variable by about 5bpm. These can last from a few minutes to a couple of hours. I have ok blood pressure and a low resting heart rate which has been borderline brachycardic going down to low 40s at night. My daytime resting heart rate is 57 and tends to only go up by about 10pm during palpitations.

I have had 3 episodes of extremely bad chest pain, behind the breast bone, and was scared that I had had a heart attack. Two of these were at night and woke me up.

When I went to A and E I was told if the symptoms persisted to see my GP. which I did yesterday. I have more blood tests and an ECG booked. I have been referred for a continuous heart monitor but the appointment isn’t for 5 months.

Then yesterday after my GP appointment I was researching my symptom online and found takotsubo syndrome. The symptoms seem to fit and I am in the higher risk category being female, 61 and a lifelong sufferer of clinical depression. And I have recently had life events which have dramatically increased my stress levels.

Can anyone who has this condition tell me if my symptoms sound like theirs? And if they do how do I go about getting a diagnosis? Can it be given with blood test results? Evidently it is pot luck if the ECG is done during an episode, so that is probably not helpful. And if it is left undiagnosed and unmediated what will happen?

Hoping someone can help me find answers.

Thank you for any advice.

[Milkfairy Heart Star]

Hello,

Hopefully fishonabike who has experienced a Takostubo event will see your post and respond.

Another thought.

I live with vasospastic angina, my coronary arteries go into transient constrictions, causing a lack of supply to my heart. My coronary arteries are unobstructed.

A classic symptom of vasospastic angina is chest pain at rest especially during the night.

Microvascular angina is another type of angina without blocked coronary arteries. Microvascular angina is caused by the inability of the small blood vessels of the heart to dilate or stay dilated in response to extra demands like exercise.

This type of angina is more common in menopausal women.

The BHF has this information about angina.

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

[Heartbroke]

First of all stop reading up on diagnosis it won't help your mind. I had Takosubo syndrome in October 2022 the symptoms were as all my symptoms were and are still as I have vasospasms burning middle chest then pains radiating under arm pits around to left shoulder blade up neck into jaw. My traponin bloods showed my ECG not so much showed. I had a heart attack 2 months before Takosubo where I had a blockage in an artery and stent fitted. I had an angiogram that diagnosed Takosubo and was just given more blood thinners. I had had an injection the day before which I believe caused this but it was and wasn't confirmed they just seemed to think I had had a traumatic event happen 🤷 I hadn't so still unsure what the real cause was. You do recover from it though.

[Lesmis85]

My Takotsubo went undiagnosed for more than 15 years until a Troponin test reading of 212 last year (normal reading is around 11/12). I'd already had high BP and a history of 'funny turns' when I would almost pass out, have heavy feeling in my chest and some nausea. I've been given medication and I no longer have frequent funny turns but nor do I feel at all well. I find walking difficult as my body feels heavy and I get breathless with the least exertion. However, my point is, I was never diagnosed with echos or blood tests it was the Troponin test that showed the heart had a problem. Best wishes for a diagnosis soon.

[DebbieSomerset in reply to Lesmis85]

Thank you for this. I don’t have high BP. I’ll look into the Troponin in test though. 😊

[Lesmis85 in reply to DebbieSomerset]

Hi Debbie, Forgot to say, GPs don't normally do the Troponin test. Last year was my fourth A&E visit over the years (including two short admissions) but they didn't do a Troponin test on those occasions.

[Milkfairy Heart Star in reply to DebbieSomerset]

Troponin is a protein released into the blood stream when the heart is damaged. Usually Troponin cannot be detected in the blood stream

Troponin blood levels are taken usually in A&E if a person has the symptoms of a heart attack. Two blood tests need to be taken several hours apart.

Usually Troponin blood levels will rise above a certain level then fall if a person has had a heart attack.

Troponin blood levels can be raised after a Takostubo event or myocarditis for a couple of weeks.

The other tests that can be offered to help diagnose Takostubo syndrome is an echocardiogram or cardiac MRI.

I had these tests when I suspected of having a Takostubo event. I was diagnosed with vasospastic angina later.

This website has some more information about Takostubo syndrome.

takotsubo.net/

[fishonabike]

I am sorry to hear that you are having these symptoms but that the medics are not getting anywhere with finding their cause. Unfortunately this can happen when test results do not show results which trigger action by doctors, also it is more common for women's heart conditions to be missed or misdiagnosed because the protocols which guide diagnosis are based on mostly male data.

As you have found out the symptoms of Takotsubo are similar to what you have, but these are also symptoms of Myocarditis (inflammation of the heart muscle) and atypical angina ( where there is no obvious blockage of arteries, aka INOCA/ANOCA). All these can be hard to diagnose with routine tests and need more thorough investigations like an echocardiogram, specialised angiogram and other heart imaging. Milkfairy is a good source of info on these.

If you are not getting a diagnosis from emergency care, you need to persuade your GP to refer you to a cardiologist. I see you are now waiting for heart monitoring, so unless your GP decides that you need a more urgent referral you are left waiting and worrying. So you probably feel helpless and confused.

While you wait you could phone 111 every time the pain hits, they will advise and can send paramedics, an ambulance or arrange an urgent GP service visit if necessary. You should also keep notes on how often you get the pain and other symptoms, what it feels like, how long it lasts, what helps or makes it worse etc. This can help you to spot any patterns and may be helpful evidence for doctors trying to diagnose your problem.

Your other option is the private route, but this may not be financially possible.

We cannot diagnose your problem, or confirm your suspicions, but you clearly are having a bad time which is affecting what you do. Please stress the effect of this on your ability to carry out your normal activities when you see your GP. There is help for most heart problems once you get a diagnosis, but sometimes you need to get assertive with your GP to access the right diagnostic services.

There is a Facebook support group for people with Takotsubo (Takotsubo Support Group as well as others for other similar conditions. Sadly the thing these have in common is the poor levels of understanding of less common and harder to diagnose heart conditions among the medical community. This limits their perspective and leaves many of us distressed and suffering unnecessarily - I am sorry that you are in this position and hope that help and answers home soon

[DebbieSomerset in reply to fishonabike]

Thank you so much for this. I haven’t been to A and E when I was having a “proper” attack - I have had 3 episodes when the pain was extreme and centralised under my breast bone. I went to A and E when I first started experiencing milder pain, and by the time I was seen it had passed. I have discomfort for long periods most days now. The daily pain is situated on my left side in the region of the heart and is more uncomfortable and worrying than debilitating.

So in your experience do you think that I’m more likely to get a diagnosis if I call 111 or 999 when I am having severe pains? Or just any pains? I wasn’t sure what you meant. Is this when an ECG will show symptoms rather than just when I am experiencing the milder pain? This being the case, I will make the call to 111 or 999 next time I have an extreme pain. Thank you again.

[fishonabike in reply to DebbieSomerset]

What you describe sounds more like a type of angina than takotsubo to me, but I am not a doctor

Whether you phone 111 or 999 seems to make little difference in my experience - 111 will call whatever support they think you need after an initial assessment through questions

You should seek help with chest pain as you may need urgent treatment which can not be supplied elsewhere

A trip to A&E might even result in a rapid referral to a chest clinic, but you should also push your GP for referral to a cardiologist

[Silvertail]

I have had four episodes of TTS. Did you go to A & E when you first had these pains? If you had takotsubo an ecg or echo would have shown your left ventricle beating in a ballooning pattern ie taking the shape of a takotsubo (or octopus pot). That is a sure sign. However this lasts only a few days but it takes longer for your heart to heal and some people are left with problems.

Have you been tested for microvascular angina. I also have this - had it long before TTS. It causes me chest pains on walking too far or too fast, climbing steps or hills.

Also, reflux/indigestion causes me severe pain behind the breastbone at times. I find it more painful than in any of my TTS episodes.

So you see you really need comprehensive testing by a cardiologist to get to the bottom of your pain. Best wishes.

[Milkfairy Heart Star]

I agree with fishonabike

Your discription of your symptoms sounds more like angina.

I also suggest you keep a diary of your symptoms, contact 111 if your symptoms continue or ask your GP to refer you to the Rapid Chest Pain Clinic.

The BHF website has this information about the different types of angina.

bhf.org.uk/informationsuppo...

Maybe give the BHF helpline a call and speak with one of the cardiac nurses.

bhf.org.uk/informationsuppo...