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
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. [Edit:] see ozziebob's post, apparently you don't need an account [/endEdit]
chat dot openai dot com
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
Thanks, but to be clear, thevwording was not mine but the AI's
Is it the Medtronic Azure Dawn because I've got one of those and it has changed and rescued my life for the better. Like you i had been almost wishing for the end I was so miserable. It is apparently the Rolls Royce of pacemakers so I was told!!
that is exactly what I have according to Medtronic. I supposedly have the first I was referred to as unique. You most likely have a like I do who is always there even at. After my surgery, she had no idea what I was talking about that I had done. She actually had to call Medtronic. They constantly teased me about how I had to be different. Yes he did the HIS pace bundling and I actually have a third lead just kind of hanging around for now lol you’re only the second person I know to have anything similar. It will be two years Valentines that I got my what I referred to as my new heart. Doctor Aditya Saini was my EP in Lufkin, Texas. I swear he was doing surgery on the heart before he left the womb.
I remember the day he told me he had presented my case up in Dallas. He didn’t say where but he said they asked him to come back and teach the EP’s so they could save more lives like mine.
the only situation I have had was a scare with my battery. He had me in his office within two hours with a Medtronic engineer on the phone. Evidently they can see things going through some type of back door that no one else can see with our pacemakers and is always my tech, Sarah was there. What a team they treated me like a queen they always do. There was no other option for me when my cardioversion failed and they had trouble with three tries to get me going. I really thought it was the end when I was told when I woke up, he was standing there patting my hand. He always would look at me and say don’t worry you’re not going anywhere. When they told me what had happened, I was in tears only he knew how to fix that for me. If you saw it, I mentioned he has left and gone to Jacksonville, Florida university of Florida He is now the chief of electrophysiology. I never asked how old he was but I know he is young. He actually won the college thing on jeopardy. He is quiet on assuming In Humble you would never realize what a diamond he is.
wow you do sound exactly like when I would sit on the couch. If I even moved, I was in pain. It was as if if I was not a vegetable, I would have nothing but agony.
I am so happy to meet you here thank you for letting me know. I don’t know why I was so blessed to have things happen as they did and you would never a hospital that I had been afraid to go to because of things I had heard and a young doctor practicing in a little town in Texas. The OR staff as well as everyone that worked for him were so incredible. I wish I had been more with it at the time so I could tell each and every one of them what they mean to me.
I am so happy to know that you are feeling great. Also, he told me there is nothing that I cannot do. do everything anyone without a heart problem can do. I don’t plan on joining Cirque du Soleil anytime soon lol but he wasn’t worried about leaving told I’m going to be fine anyway I know where to find him lol he’s probably about a 15 Hour Dr. less because when I moved, it was an 18 Hour Dr..
congratulations. Isn’t it the most incredible thing ever? I love it when I get notified that they had done my test. I think my next one is March.
oh the battery situation that was frightening well it turns out it’s the app. Evidently the first 90 days with the pacemaker things are a bit strange there were things in the app that we are not supposed to really see and most people don’t even notice but what I noticed was my 11 years suddenly became five overnight on my battery lasting my was what if it does that again that means I have no battery does that mean I’m dead he quickly pulled things together. The engineer explained to everyone, including the doctor and the tech. I still don’t quite understand about the 90 days. Usually, I know what he’s talking about pretty much I was told I shouldn’t have been looking at that lol they said when they put the app together, there were a few things they thought should not be in there for us to be able to see evidently this was one of them I love to learn my doctor was teaching me as he would teach his students. He was a teacher at Baylor medical among other things. when I met him, I started telling people he is be famous one of these days whether he likes it or not and I think what he created was one of the first steps although I know he did so much else before I’m just one little piece of an incredible doctor
thank you again for telling me about you. You really made me feel good.
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.
Hi Forencic.
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.
Paul
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.
Isn't it sad (but just as well) that we have to ask serious questions about our health...to a machine...all that training and cardiologists now haven't got the time or wherewithall to always see patients to explain and individually treat us.
I've waited 6 months for an appointment with a cardiologist after definite AF diagnosis in July last year. Immediately put on the usual medication for this condition and left to wait for an appt. Now I have one.. its on the phone! He/she
won't meet me, know what I'm like as an individual or anything about my life...just all routine.
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
Great advice Blearyeyes.
Thanks, take care , Bee
Excellent advice
Great advice and very reassuring. I always go through the secretaries to good effect too.
Yes, it's a trick I'm so glad to have discovered, ask the Secretary and they kick the system into gear, you usually get your face to face appointments quicker and often get a Consultant call you back in 24 hours.I also ask the Secretaries for their work email addresses which means you can have what was said between you as a record , it makes them jump to attention even quicker if you politely query a delay or changes in meds that haven't been followed up.
And I always ask to be copied in for all of my Consultants letters so that I get to read what they send to the GP and I've got evidence to use to chase up delays at the surgery if they try to wiggle out of the recommendations from the hospital.
It's terrible but years of dealing with this stuff has proved to me you can't just expect that something will be done even if you were told by word of mouth that it would be.
Yes, exactly that I tend to have a positive reaction rather than negative and therefore happier when in control of my own destiny lol
Hi, I got the letter last week and have done everything to contact them. Nothing back and it's been a week. I even sent emails to go private to get answers. This is definitely poor care from them. It's made me ill thinking about what I have and reading online I don't have a lot of life left plus I'm 78% more likely to have a heart attack. Thank you for getting back. Jayne (dogmatic)
If you have tried everyone including your GP , you may be better going outside the rules and heading to your GP Surgery and speaking to the receptionist or Practice Manager in person , tell them you have these results and nobody has contacted you and it's causing you Anxiety and you need to arrange a face to face appointment or call with the GP for that day or you will sadly need to make a complaint to the Integrated Care Board ( ICB) because your immediate medical needs are not being met.Please do try not to dwell on the most negative things you have read online.
There are far more treatments than there have ever been before for your condition and you don't know what stage you are at until you speak to someone. If this condition is of your type and caught early the treatment options give a good prognosis and a much longer life prediction than before.
Yes , it can increase your risk of other things but those risks are also improved with the treatment.
But the one thing that can increase your risk and general symptoms is Anxiety , I know it feels impossible but try to do whatever you can to keep as calm as you can.
Take Care , Bee
I'm so sorry that you've discovered your diagnosis via a letter. You should have been informed face to face by a cardiologist so that your condition could be explained to you in full, & to give you the opportunity to ask questions. We really shouldn't have to feel the need to Google. I hope you feel a bit calmer today & I know it's really difficult but try not to worry.
Two weeks after being discharged from hospital I received my Echocardiogram report, when I rang the HF nurses panicking they apologised & informed me that I should have had a face to face appointment to explain Echocardiogram results.
Call a BHF nurse, details on website ❤️🩹
Hi Dogmatic.
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.
What a load of tripe.
Good luck
Paul
The British Heart Foundation has a helpline, where you can speak to a cardic nurse for help. May be better to speak to someone rather than rely on online info, no matter how good its supposed to be.
I feel for you with a diagnosis and no answers, however the answer that you need is the one which treats your individual needs, one that even ChatGPT can’t do without you medical tests and records. I know it’s hard but don’t look at anymore online stuff, if you are a glass half empty person it will only provide you with probably what will be unnecessary anxiety. If it was an emergency that you be seen it would probably have been done, so you have already been given good advice chase up your appointment and get the information specific to you and your case.Best of luck with it all.
I too have Cardiac Amyloid, but the light chain type. I can tell you that the best thing you can do for yourself is to reach out to an amyloid specialist. I'm in the US, Maine, and travel to Boston Mass to see my specialist team but have my chemo treatments in Maine. The sooner treatment is started, the better the prognosis and they are constantly making strides with new treatments. I have had a great response to the chemo combo that I am on. I had an ablation for afib in October and all of my cardiac numbers have plunged back into the normal range.
Oh I'm in Worcester UK and it's very poor to get anything here. I can not after a week of the letter arriving get anyone to answer my calls,emails to explain things. We have people passing away in corridors the NHS is disgusting. I even offered to go private and no response. I kept telling my doctors for 2 years how I was feeling before I got anyone to scan my heart. 2016 I was scanned in Colchester Essex I was told I had AFib. But since moving to this horrible place there been no care about how I am deteriorating. Goodluck
First of all, don't panic... Google searches are notorious for scaring you, giving you the WORST case scenarios! The fact that your cardiologist won't talk to you stinks, but as soon as you can talk to him/her and get the real run down. Many things can sound very bad worse case, but the reality is very often different. Medical science doe a lot wrong, but it also does a lot right when treating issues!
So my cardioversion on the 13th January lasted 3 days. Went back into AF asleep on the the third night. 
Can anyone help please.
Advice needed on statins please
Advice please
