Amyloid

[Deb1838]

Hi my lovely friends

I know this is not strictly af but I am really scared.

I received a letter from cardiologist today and he wants me to have a nuclear scan and blood test to check for Amyloid.

I am now really scared to why I have to have this, it has not been mentioned to me before receiving appointment.

It also says I have significant concentric lvh.

Has anyone had this, I am feeling really nauseous with the anxiety

Sorry for always bothering you but you are so knowledgeable.

Many thanks

Deb

[CDreamer]

Hi Deb - always worrying when you don’t know what things mean and the only way you will know is by asking your doctor.

May I suggest you ring either your cardiologist, nurse if you have a number or ask for a conversation with your GP for clarification,

I think the nuclear scan is not too unusual and we all have blood tests quite regularly so I wouldn’t be too concerned about those tests as it sounds as though your cardiologist is trying to be really thorough and that’s a good thing!

Have you a date for the nuclear scan?

lvh means there may be indications of changes to the wall of the left ventricle and I expect this is why your cardiologist is asking for these tests ie: to find the underlying cause.

Long, slow, deep breaths and repeat and pick up the phone.

Very best wishes and let us know how you get on.

[Deb1838 in reply to CDreamer]

Thank you CD for replying

I think what scared me so much is that no one had mentioned it by till I got a letter saying they were Going to arrange it.

I think your right I will try and ring cardiac nurse to find out what the reason is.

I had a scan last year Which was meant to be nuclear but my heart was going so fast they didn’t have to use it

I was diagnosed with heart failure prior to CV but since then my ejection rate has gone up to 50, I know that’s not good but hopefully I can do some exercise and improve it

Take care

[CDreamer in reply to Deb1838]

My understanding is that EF of 50 is normal, however it depends on other factors, it’s only one part of the story.

Take care.

[Deb1838 in reply to CDreamer]

Thank you CD, I was told it meant I was sluggish which to be fair sums me up 😜

Thank you for advice

[angelfacence in reply to Deb1838]

Hi Deb have you actually been diagnosed with Amyloidosis, if not they mght be talking about a SAP scan. I might be wrong . Do have Amyliod of the heart.hope this is of some help to you.

[Deb1838 in reply to angelfacence]

Thank you angel, no I have not actually been diagnosed yet but he is checking for it

[angelfacence in reply to Deb1838]

Hi. Deb the Sap scan is done at the Royal Free in London because it is the only one in the country.They are lovely and of course they are the resurch hospital.I was diagnosed in 2017 with Amyloid of the heart,so try not to worry as if it turns out that you do have Amyloid they will take care of you and very caring.

[angelfacence in reply to angelfacence]

Sorry for the spelling. Slight brain blockage !!

[Deb1838 in reply to angelfacence]

Thank you angel that is reassuring

I have to say I had not heard of it and then of course I googled and scared myself silly

[angelfacence in reply to Deb1838]

Hi Deb. Listen to the NAC at Royal Free. They are straight talking. And there are different types.take care and try not to worry until you definately know.

[rosyG]

Hi DebI agree with all CDreamer has said- just to add that the terminology varies so much and it can turn out to be very small changes- significant may just mean they can spot it for example so best to wait for scans which will show more.

[Deb1838 in reply to rosyG]

Thank you Rosy for your reply

I think you are right, it’s the problem of just seeing something in a letter to my drs rather than having an opportunity to discuss it

Take care

[irene75359]

I don't have any knowledge of this condition and can't help, but most people here have gone through some sort of investigation (including me) and will empathise with how you feel at the moment. Google is such a curse if you are worried, and particularly if your cardiologist is just being thorough in looking after you. Please come back and let is know how you get on. Thinking of you.

[Deb1838 in reply to irene75359]

Thank you Irene

Feel a little bit better today

Just scared the life out of me

[Jajarunner]

They always do this! My livers pecialist suddenly sent me for a ton of extra tests and scared the hell out of me!

Another time, out of the blue I got copied into a letter mentioning that I had a distorted aorta in my liver. Cue four weeks of panic before my cardiology appointment before he explained that it was a TYPO and it should have said arteries not aorta. Which was expected whereas aorta was not! I must say I was suspicious as you don't have an aorta in your liver but figured that they probably knew better than me!

Try ringing them to put your mind at risk though my hospital was unhelpful when I tried to contact mine, tbh.

Good luck!

[sdweller]

WAY early to start freaking out! I had the same thing years ago... and it turned out to be nothing, which happens a lot. It is human nature to think the worst possible scenario...

[32ford]

hi how are you, one of my fellow heart transplant friends in australia has amolydosis do you want to know more or are you ok