I have just had a letter sent after a scan I had. The letter said I have Cardiac amyloid Transthyretin cardiac amyloidosis.
I'm so stressed and feel so broken as I can not get my cardiologist to speak to me and discuss things. Ie Dos and don't. Google tells me it's bad news and life cut short.
Dogmatic
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Dogmatic
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Don't Google, but you might try ChatGPT, even the free version has improved a lot on medical matters and you can keep asking as many questions as you like until you fully understand. You will need to create an account if you've not already got one.
But for a quick response, I got this off it for you. As always with ChatGPT, don't take everything it says at face value. The trick is to ask clarification questions and to ask it to give you references. You can also use the terms it uses to search for yourself on trusted medical sites:
[ChatGPT:] "Cardiac amyloid transthyretin (ATTR) cardiac amyloidosis refers to a condition in which abnormal deposits of transthyretin protein build up in the heart tissue. Here's a breakdown of the terms:
Cardiac: Refers to the heart.
Amyloid: Refers to deposits of abnormal proteins that form insoluble fibrils and accumulate in tissues.
Transthyretin (TTR): A protein normally produced by the liver, which transports thyroid hormone and vitamin A (retinol) in the blood. In ATTR amyloidosis, this protein misfolds and forms amyloid fibrils.
Cardiac Amyloidosis: Describes amyloid deposits specifically in the heart, leading to stiffening of the heart muscle (restrictive cardiomyopathy). This can impair the heart's ability to pump blood effectively.
Types of ATTR Cardiac Amyloidosis
Wild-type ATTR (wtATTR): Occurs due to age-related changes in transthyretin and is more common in older adults.
Hereditary ATTR (hATTR): Caused by mutations in the TTR gene, inherited from one or both parents.
Symptoms and Effects
Heart failure symptoms like shortness of breath, fatigue, and swelling in the legs.
Arrhythmias (irregular heartbeats).
Thickening of the heart wall seen on imaging (e.g., echocardiogram or cardiac MRI).
Why It’s Mentioned
If this term appears in a consultant’s letter, it likely means the patient has been diagnosed or is being evaluated for this condition. The consultant might recommend further tests (e.g., blood tests, biopsy, or imaging) or treatment options, which may include medications to stabilize transthyretin, manage heart failure, or even advanced therapies like RNA silencing agents.
Would you like more detailed information on testing or treatment?"
Cliff you are awesome. You took something sounding incredibly frightening and deadly and broke it down to something that is not, and most of those things can be addressed. I don’t think a patient should ever be told a diagnosis in a letter like that. What is wrong with some of these doctors that they don’t talk to us like a human is at our age we are not idiots but we are also not doctors and don’t know what the heck they are talking about when they tell us these things.
I have my former EP on a pedestal for a reason. He spoke to me not at me. He was always there for me either through his nurse or he would get me into the office no matter what.
I had one situation he had me in the office within two hours, not only that but he had my technical person and an engineer from Medtronic on the phone because I have an incredibly different type of pacemaker one of a kind.
sadly my doctor has moved on, but I’m happy for him. He was made chief of a hospital Jacksonville, chief of electrophysiology and he is young. I don’t even know if he’s 40 he deserves every incredible thing given to him I say that especially because he gave me my life that I was sure was over and actually I wanted it over. I was so sick.
Dogmatic the fact that your doctor won’t talk to you tells me you might want to start looking for another I don’t care how busy they are. You are a person case by case they need to pay attention to you. We are not talking about a cut finger. We are talking about a heart that we only have one of.
I am angry at your doctor for sending that and even angrier for not talking to you
Hallelujah! Someone on here who also gets ChatGPT. I see so many people scared of it or saying it’s worse than Google when it’s not!! It’s the absolute best tool for getting an understanding of health matters (and many other things!).
A tip for people thinking they might use it - when you ask it what something is or means, ask it to explain it to you in layman’s terms or in terms the average person would understand. I’ve been known to actually say ‘explain it in terms a child would understand’ and it gives me a very simple explanation. I can then ask it for more detail if I require.
I also start a new chat for each new topic so that when I look back on my chats I can easily find the one I need.
Couple of other tricks are 1. Ask for references, then follow them up. It does tend to give what you might call received wisdom, concocted from many sources which all say the same. But occasionally it hallucinates a reference which actually doesn't exist, or quotes one which isn't relevant. 2. Ask lots of follow up questions and always challenge something you feel doesn't sound right. 3. Always check other sources.
It has improved, though, and no longer says a pound of lead is heavier than a pound of feathers!
If you ask it to always provide references where relevant, to any question you ask in future, it will. It holds a memory of your requests that may impact future requests.
I have told mine my diagnoses and the medications Im on. When I ask it a question about a drug and its interactions with my medications, it remembers them and I don’t have to provide them again - it will provide details on the drug and how it may interact with what Im on and how it may or may not benefit my medical conditions.
I know you know all of this but I'm saying for the benefit of people who are still unsure of the benefits of ChatGPT.
Like anything though you still should ALWAYS use critical thinking and don’t take anything as blind fact. Double checking references and research is really important.
Using the right promotes is very important. I cover this on my AI website but I can't link to it because of forum rules about self promotion. However, I have asked admin if I can link to my blog post about AI and afib. I will make a donation to AFA everytime anyone clicks an affilate link at the end of the blog. If this is the case you'll be able to access the site and learn how to promote AI.
I wouldn't say it was the best tool for getting an understanding of health matters, it is one tool to begin with , just like Google it can offer up inaccurate information, because it does rely on the way it is asked the question.ChatGPT , much like Google can include misinformation in its answers that sounds very credible because of the sources it may have referenced.
The best way to get an understanding of health issues is usually to read information on recommended medical or health charity websites.
As you and Cliff say , you do need to enter your queries with specific , detailed requests and double check the references that were highlighted...... basically, just like using Google.
Cliff G has given an explanation of the condition, but I know that all you probably want to know at the moment is what you should do , if you need treatments or medications, if you need more tests.If the letter has only arrived today , take a deep breath.
You may not be able to get hold of your Cardiologist because it is the weekend.
They may also need to read your results and want to make some decisions before they speak to you.
If you have your Cardiologists name, you can ring the hospital and ask to speak to their Secretary.
When you speak to them , tell them you received the letter with a diagnosis and you are worried and want to know what you should do and what happens next.
Ask them if they can speak to the Cardiologist and arrange for them to call you.
Give them your email address and ask them to either ring you or email you to let you know when they will call so that you can be in a quiet place at home for the call.
You could also ask for your local Cardiac Nurse Helpline number either from the Secretary or get the number from your hospital receptionist.
Your cardiology helpline should be able to help explain things for you and give you some advice about what to do until your doctor speaks to you.
You could also contact your GP surgery and ask to speak to a doctor on the phone today about your results because they've just arrived and you are very shocked and just need to know how things will progress or if the Cardiologist has sent them any other information,
You may not be able to get to speak to doctors until Monday which is going to feel very stressful, but the best thing you can do while you wait is to find relaxing ways to distract your mind and keep you calm.
There will be treatments and self care methods to do with your diet that help you to control your condition and reduce any risks of complications. There will be changes but relaxation and pacing your life will make these easier. The best thing to do is to keep positive about that .
Take care and do let us know how you get on.
You could also call the British Heart Foundation helpline to get more advice and support. You can get the phone number online , or on the BHF forum page on Health Unlocked.
If you don't get to speak to someone before the weekend and you are worrying , do post here again or join the BHF HU forum and post there too because you are likely to find other members with your condition that can reassure you , and there will be people whom will answer and try to help to keep you relaxed, hugs , Bee
Let's slow down and analyse this a little more, shall we?
Copy and paste (Mr Chatty):
ATTR amyloidosis has a better prognosis than other types of cardiac amyloidosis.
It sounds Dr Google is up to his old tricks again - full of doom and gloom. If it's caught early the prognosis is much better. Sure you are worried - I know I would panic too. But before you go into full panic mode get more medical advice from a Doctor - not Google.
There are different types of the condition; many can be managed well with treatment that may help improve symptoms.
The condition can lead to heart failure - 'heart failure' is the wrong term to use and is not as scary as it sounds. It simply means your heart isn't pumping blood as effectively as it should. Again there are meds to help treat this.
I fully understand your concern - however, you need proper medical advice about your condition. There's every chance it's not as bad as you think.
Please do me a favour - don't Google it. I had a cold and a bad cough once and asked Dr Google for his opinion. He said it was likely to be lung cancer and I would have two years left if I was lucky. You couldn't make it up - I just had a bad cold.
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