NO DIAGNOSIS AS YET

[Quaddie]

Hi again I was diagnosed with a likely Takosubo diagnosis back at end of October, following a small heart attack in Turkey and 6 days hospitalised. TROPONIN 2640. I am now wondering if it wss a TTevent and not heart attack have they even heard of TTS in Turkey 💁‍♀️. Some 2 months after UK discharge my Cardiologist wants to go down route of ECGs and Echos for daughters and brother through their own GP I would imagine. This will take months. Opinions appreciated please.

[Bluehope81]

Not medical advice, opinions and suggestions only.

Sorry your going through all this, but Takosubo that is fascinating indeed, the muscle fibers change shape in the left ventricle, due to poorly understood mechanisms, usually brought on by some event or incident, possibly large hormonal changes.

Have you seen your x-ray or CT off the Takosubo shape?

Has the level of circulating MicroRNA's been looked at?

In time the fibers can repair. Wishing you a speedy recovery.

[Quaddie in reply to Bluehope81]

No my angiogram was taken in Turkey and I was in hospital there for 6 days then 8 days before I coukdvfly. Cardiologist said definitely Myocardial Infarction. Once home to UK after 1 week I had chest pain and was admitted via A&E for 10 days having tests and my heart mri didn't show Takosubo shape at that point (it was by then 4 weeks since MI. But a thickening on left side. So given likely diagnosis of TTS and discharged. At outpatients apt which was a phone call I'm now going along route of Hypertrophic Cardiomyopathy because of thickening and breathlessness. I can't another 9 months with no definite diagnosis its bad for my mental health. In UK they don't tell us figures and I didn't know what to ask for. Might go private for a session and try to find out. Thanks

[Milkfairy Heart Star in reply to Quaddie]

Hello,

I am really sorry to hear about the lack of clarity about your diagnosis.

In the UK you can ask for copies of your medical notes and test results for free.

Contact the Patient Advisory Liaison Service PALS of the hospital concerned and they will help you.

Are you able to get a copy of notes and your angiogram report from Turkey?

Angiograms are usually recorded so you maybe able ask for the recording. You probably will have to pay though.

I was admitted to hospital originally many years ago with a suspected heart attack, however because my coronary arteries are unblocked, I was told that I couldn't have angina or a heart attack.

I was later diagnosed with vasospastic angina following a specialised angiogram.

I now know that you can have a myocardial infarction no obstructive coronary arteries MINOCA. Common causes are microvascular dysfunction, coronary vasospasms, spontaneous coronary artery dissection SCAD or a blood clot or small piece of plaque blocking a coronary artery.

Has your Cardiology team considered that microvascular angina is a possible cause of your symptoms?

A cardiac perfusion MRI can be helpful to diagnose microvascular dysfunction which causes microvascular angina.

It is also good at looking at the heart muscle itself.

I have scarring on my heart as I have had myocarditis in the past.

It can be difficult having a telephone consultation and maybe through PALS ask for a face to face appointment with a Cardiologist so that everything can be explained to you more fully and you have time to ask questions.

Tell PALS how your mental health is being effected.

Cardiomyopathy UK is a charity that has a helpline and you may find some further support from this organisation.

cardiomyopathy.org/

fishonabike is much more knowledgeable about Takostubo syndrome and hopefully she'll be along to add her thoughts too.

[Quaddie in reply to Milkfairy]

Thank you for this out of desperation and following the sudden "yet to be confirmed" death of my cousin last weekend she was inly 67 I need to know if its hypertrophic so booked a one off private consultation with a specialist cardiologist to seek advice. I have medical report from Turkey plus a cd of the angiogram from which my current cardiologist said was too light to see anything clearly unfortunately He's very thorough but it's not moving fast enough due to nhs constraints. I will contact PALA if I need to after this initial apymt and will mention the Microvascular Angina a etc. Thank you

[Bluehope81]

Not medical advice , opinions and suggestions only,

I think your making the right move going to see the doctor privately for a good long consultation to go through everything, I would research a consultant who was an expert in these areas such as HCM and TTS, I would look at world leading centres like the John Radcliffe and Papworth or some of the London Hospitals once you have found one you like try and see if they do a private clinic, most do. Not all private consultants are equal so just taking one who is nearby would not suffice in your unique situation.

Throwing out another idea, see one consultant who is an expert in HCM and another expert in TTS.

Remember these scanning modalities are doing there best, to build a model of what's going on inside you, but they are only models, so it can lead to grey areas in diagnosis, you seem like a courageous woman, I assume woman because of query TTS diagnosis.

[Quaddie in reply to Bluehope81]

Thanks yes it is a London hospital

[fishonabike]

hi Quaddie, i wonder if your cardiologist cardiologist suspects that you have a type pf cardiomyopathy with inherited traits and wants you you have your descendants checked for their own well being - i see you mention Hypertrophic Cardiomyopathy, this is one which can be inherited, but there are other less well known conditions

at least one recent episode of the Channel 5 documentary series on a Coroner's job, "Cause of Death" was connected with such cases

you may neeed to discuss this with the family members concerned and you might find it helpful to watch the documentary (all available on My 5, Series 2 episodes 4&5 i think, but they are all very interesting!)

By the way there have been papers on Takotsubo from Turkish doctors so they have heard of it, but the extent of that knowledge will be variable as it is in all countries - one of the problems with diagnosing Takotsubo is that in and angiogram most Cardiologists look first for signs of vascular obstruction, partial or complete - if there is obstruction they often assume MI, although MI and Takotsubo can occur together and Takotsubo can occur in people with partially obstructed arteries withou MI

the swelling noted on your images at 4 weeks might be inflammation or they could be hypertrophy, a cardiac MRI could clarify have clarified that - ongoing symptoms could be from a variety of causes but your Cardiologist might be trying to exclude the obvious ones which are easy to investigate, before looking for less comon ones - do you know if you have had blood tests for BNP (gloshospitals.nhs.uk/our-se...

BTW- you can request your records from the hospital under the Freedom of Enquiry rights - look on the hospital website for FOE or Patient records - you can also ask to be copied in on all communications

i think that's enough for now

[Quaddie in reply to fishonabike]

Thank you I'll look at those. Yes he did mention the Hocom hypertrophic cardiomyopathy due to breathlessness and not sure if I'd mentioned my first cousin died suddenly last week as we're waiting to find out cause. She was one year older. So important I find out thank you for all your tips 😊