Update on CT coronary angiogram - totally confused by results, anyone had this experience?

[Wendy39]

Hello everyone

How are you all?

I just wanted to update you all quickly.

As you know I had experiencing symptoms like a racing heart beat, chest pain, palpitations, periods of feeling extremely dizzy and/or nauseous, persistent dry cough etc.

The most important points are:

*Baseline echocardiogram in 2014 – 3 trace leaky valves and 1 trace to mild leaky valve.

(Trace to mild AR & Trace MR, TR, and PR – 2014) – These results were not reviewed by a cardiologist or reported on properly

* Echo repeated on 23rd January 2023 – Letter from cardiologist I will be recalled for a further echo in 12 months’ time, (I could see lots of red on the screen during this echo procedure) echo showed:

* Intra ventricular septum is somewhat hypokinetic

* Bundle branch block?

* Left ventricular systolic function is perhaps at the lower limits of normal with an injection fraction of around 50%

* ECG at Doctors Surgery on 15th May 2023 - Borderline ECG - Non specific T abnormality - the Nurse actually told me as she quickly folded up the result so that I couldn't see it, that it was routine to get the GP's permission for me to leave and she would come back ASAP. She went to speak to a GP and I was told that it was safe for me to leave and that what the ECG showed wouldn't be dealt with by a GP anyway, I'd need to see a Consultant.

***

My health board were not investigating any further. A cardiologist who reviewed my above results said that although I had lupus, he didn't think it was linked/relevant and I could just have a repeat echo in 12 months, especially as I was symptoms free......

I wasn't symptom free and that was the point. And as far as I know we are at a higher risk of heart disease etc.

So I pursued it with my health insurance.

I had a normal ECG at my first private appointment (in sinus rhythm throughout) and that was told I needed a Coronary CT Angiogram with contrast dye.

I have just got the results and covering letter. I am seeing this Cardiologist at the start of October to discuss this in more detail, however the upshot is

Report

Left Main:

Normal

Left Anterior Descending

Small mixed plaque at ostium causing minimal (1-24%) stenosis

Left Circumflex

Normal

Right Coronary Artery

Normal

Other Cardiac findings

LV appears border line enlarged (LVIDd 55.7mm) on this single diastolic reconstruction. Suggest echo correlation.

Conclusions:

Mild coronary plaque but no evidence of obstructed Coronary disease

The covering letter says this is all reassuring, although it'll be discussed further ay my appointment in October.

***

Whilst I am very, very pleased that only one small area of plaques has been found on the CT, and no obstructed coronary disease, I am once again totally confused!!!!

My investigations before this private coronary CT angiogram tell a very different picture to what I am now being told. It is almost like it is two different people???

Leaky valves. Possible left bundle branch block, which does then produce an irregular T wave (which backs up the left bundle branch block theory). Etc etc. Then now being told that everything is normal and nothing else detected.

I was expecting the coronary CT to look at the valves too - i.e. confirm exactly how leaky they are?? Or do these CT scans not cover that aspect?

Has anyone has this experience? Had symptoms of heart issues but told everything is normal?

I think I am so fed up with being gaslit and having a difficult diagnosis journey and also having investigations being done and told it's all fine, when it obviously isn't, that I am fed up and confused at feeling that I have to justify myself and prove my symptoms yet again....Does that make sense?

Plus I am still getting all of the symptoms!

(By the way, my sister had AVNRT (Atrio ventricular nodal re-entrant tachycardia) years ago and it took 5 years to pick it up on a heart monitor and prove she was right. She had to have surgery to stop it. )

Thanks for listening - as always.

Best wishes

Wendy xx

*My daughter tells me I am heavy breathing when I’ve done very little – lacing up my shoes etc

*24 hour heart monitor – September 2021 - Dr Kaul reviewed and saw periods of tachycardia on it – no action by hospital - She had a 24-hour tape previously which showed some ventricular ectopics and palpitations. Dr Kaul’s letter dated 7th July 2022

* Heart sounds exhibited a soft systolic murmur, my private Rhumatologist's letter 1st July 2022

* Previous incident of very extreme chest pain 11th July 2018 – nearly called for an ambulance I had very sudden and very severe pain. In the centre of my chest, right at the top of my stomach, directly under the rib cage. It was very scary and intense. I felt like I could not talk to my daughter and that I wanted to just drop to the floor and curl up. I told her I couldn’t speak to her and I could not concentrate on what she was talking to me about. She was scared too. I was walking bent over, clutching my chest and wincing in pain. I just about made it home, but driving was very difficult and I was glad it wasn’t far. It lasted two and a half hours. I have not experienced anything like this before. My initial thoughts were “I am having a heart attack” but that scared me and I convinced myself it was indigestion. I went home and went to bed until it eased. Could this have been a “silent” heart attack? I didn’t have pain in my arm or my jaw or neck. So was unsure – women’s symptoms not easy to define etc.

* Baseline echocardiogram in 2014 – 3 trace leaky valves and 1 trace to mild leaky valve.

(Trace to mild AR & Trace MR, TR, and PR – 2014) – These results were not reviewed by a cardiologist or reported on properly

* Echo repeated on 23rd January 2023 – Letter from cardiologist I will be recalled for a further echo in 12 months’ time – what do these results mean? Never even met the cardiologist to discuss my symptoms or anything, he wrongly thinks I have no symptoms and it’s all about the jet regurgitation

* Intra ventricular septum is somewhat hypokinetic

* Bundle branch block?

* Left ventricular systolic function is perhaps at the lower limits of normal with an injection fraction of around 50%

• Methotrexate – 20mg a week – increased from 15mg per week from September 2022 (started on Monday 22nd March 2021 – 15mg a week)

• Folic Acid 5mg, every day except day when I take methotrexate

• 400mg Hydroxychloroquine daily

• 2g Mycophenolate Mofetil daily

• 30mg Amitriptyline daily

• Vitamin D3 daily Supplement currently 2200 IU units a day / 55ug cholecalciferol - Solgar

• Vitamin B Complex 50 High Potency Supplement daily - Solgar

• Omeprazole 20mg capsules daily

[PMRpro]

I'm going to be blunt here - you know me well enough I hope.

Don't EVER "nearly called for an ambulance" again - call one. The system is in a mess, but it is the best you have and they need to be used appropriately. That was appropriate. If that was a heart attack and you were driving with your daughter, you were putting yours and her lives on the line.

Get yourself a fitbit or whatever that records your heart beat and where you can save it on a smart watch or the device itself - there are loads on the market. There is even a thread on our forum!

store.alivecor.co.uk/produc....

healthunlocked.com/pmrgcauk...

The red you saw on the screen was moving blood showing how it was flowing - there would have been blue as well?

[Wendy39 in reply to PMRpro]

Hello PMRpro

Yes, I do know you well enough. And I know exactly what you mean. I obviously now wish I’d phoned an ambulance. I had never experienced anything that painful before and I haven’t since. It was very bad.

However, in my defence, it was centralised pain. Not either side. No pain in either arm. No jaw pain. No shoulder pain. So not actually heart attack symptoms as such, or as I understood them to be.

I think also at the time, I was having a real battle with my lupus stuff locally and as always being told I didn’t have lupus and could come off all my meds, made to feel like a hypochondriac etc and I think it effects how I deal with stuff even now. I just thought they’ll tell me it’s indigestion and tell me off for wasting their time.

I wouldn’t hesitate to phone an ambulance if I experienced that again. I now have more knowledge about heart attack symptoms and how different they can be for a woman.

I will definitely look at getting a decent heart monitor device for myself.

How are you doing?

Wendy x

[PMRpro in reply to Wendy39]

Not so bad - been on tocilizumab/Actemra for 18 months and down to 6mg pred! Have been on 5mg but been hot as hell and admin rubbish and the adrenals said no!!! 6mg and I feel much better

[Wendy39 in reply to PMRpro]

That's good to hear. I am pleased that it's working for you. I have really been struggling with the heat here, especially last week. Felt washed out and weak. It's amazing that 1mg of steroids makes so much difference. I usually take steroids when I am going abroad on holiday, to help me cope and actually be able to enjoy myself, but when it's hot at home it's really tricky to cope. How are those drugs administered? Infusion or self inject? x

[PMRpro in reply to Wendy39]

The tocilizumab is weekly self-administered jabs. It does come as monthly infusions they weren't actually trialed for GCA/PMR?

If you get steroids for you going abroad - how come you can't get them when abroad arrives at the UK?

[CecilyParsley]

Oh dear God Wendy I am so very sorry for you. As someone who has been gaslit for 15 years I empathise. I got sick of my GP and Rheumy telling me my bloods were normal and then requesting the test results to find most of my results had been flagged up by the lab. When I confronted my GP she said well what I meant was the results are “ normal for you”?.? I think you need to go to the next appointment with specific questions about your results.

Be kind to yourself xxx

[Wendy39 in reply to CecilyParsley]

Thank you CP. You've definitely had more then your share of gaslighting in your time. How awful that you were lied to like this. You obviously caught your GP in your headlights and she was trying to defend her lack of action. We are all aware of how hard doctors work but this is not an excuse for such behaviour.

I will draft a list of questions for my appointment on 3rd October.

I know I am perimenopausal and obviously on a few medications, but it's never been suggested that these might explain these symptoms. But I need to ask a few direct questions.

How's your new puppy settling in?

Wendy x

[CecilyParsley in reply to Wendy39]

It is unacceptable that things are not explained properly or ignored. I truly hope you get answers. Skye has hit the house like a Tasmanian Devil. He is a tiny terror with no fear but we love him to bits and more importantly so does Finlay xx

[Blearyeyed]

I can understand why you are confused.Basically , when you see the Cardiologist at the appointment in October all of the questions you have asked here are the ones you need explained then.

The results appear to be good on the whole from the Angio and if you did have the contrast dye they should have been able to assess the valves and I assume they would have mentioned that in the letter , but that is something to ask straight off at your appointment.

The extra Echo Correlation test is a good thing . The Cardiologist is using the best option to fully assess if there are any issues with beats and rhythm as well as double checking any enlargement, the valves and if there is a regurgitation issue to be addressed and rechecking the EF, murmur, and Tachycardia discussed.

Did you receive any treatment for the trace valve leaks?

Trace leaks in valves are not always treated immediately unless they begin to cause specific symptoms, and often if the issue is a trace or mild one medications will be used first and often annual assessments to calculate if things have got worse or require surgical treatment.

You should ask and discover at what point they think you are at in the need for treatment.

Ejection Faction of 50% is the lower end of normal. Although having an EF of 50% or more doesn't necessarily mean you don't get heart symptoms if you have other cardiovascular or Autonomic issues that can effect how well your heart functions. EF of 50% or over is a good sign.

As you know inflammation or enlargement of the heart can occur for some people with Lupus , this is being checked on with the Echo and I'm sure the Cardio will give you answers about that and how to proceed in October.

The Branch block is a query to bring up but as this was question marked in the previous test this test may have proved that there wasn't an issue.

It is worth reminding the Cardio of your sisters history and ask about their opinion on the 2022 results about systolic murmur. Tachycardia and ectopic beats.

They may have already decided on a course of action or prevention measures to control these which they planned to discuss with you anyway.

They may have concluded that the behaviour being seen was mild or Inappropriate Sinus Tachycardia, which can cause awful symptoms but for some reason , much like conditions like P.O.T.S , they can brush this off and it can take a long time to get help with it.

One of my heart issues is Sinus Node Reentrant Tachycardia causing P.O.T.S like symptoms which is currently medicated but may need an ablation in the future.

It is worth bringing up the previous T wave abnormality and the heart crisis when discussing these sinus and Arrhythmia related results.

They may decide to review your medications as they could consider that some of them could be a contributing factor in your sinus Tachycardia.

I know I was given both amitriptyline and Propanolol to apparently help mine and mine got worse so everyone can be effected differently dependent on the underlying cause of the symptoms.

It could be that adding a beta blocker may be the answer to counteract any raised heart rate problems caused by any of your other necessary medications.

Your CAC score, or the presence of calcium plaques and their severity , is very good. Nearly all normal and the one result you have in the 1-24% range puts it as trace/mild. This would again bring them to conclude that in relation to plaques you only require retesting each 12months.

I will strongly agree with Pro at this point.

Get a watch just to help guide you when you pace yourself when you heart rate is high , as long as you don't get obsessed with it.

As if you suffer Tachycardia or Bradycardia the BP results aren't reliable from a watch as they are calculated on an algorithm based on the average HR/BP.

Use your Cuff Monitor three times a day , at the same time for a diary of results , and make sure you keep it with you to take a reading whenever you have symptoms. Building up this pattern will help you and the Cardiologist.

If you are still concerned you could buy a Kardia ECG unit or request one at your Cardiology appointment as they are now available for monitoring people with recurrent heart issues via NHS funding. Useful , becausecyou can take an ECG when symptoms start and get a good record of any Arrhythmia or AF occurring as evidence at appointments.

And definitely contact 111 , go straight to A and E ,or get an ambulance so you can be tested quickly if severe symptoms occur like they did in 2018.

I learnt my lesson with this one.

If you leave it you could have had a heart attack and apart from the damage it causes you will have no record that a problem occurred.

If their is nothing in black and white they seldom take note of what you tell them , even if that is against all the rules of good practice.

If it isn't a heart attack often the only time you will get results for certain types of AF , Arrhythmias or Tachycardia problems is when the episode is happening, especially early on.

If you leave it until the next day , going to the surgery then, unless it was a major event or is still happening, your ECG will come back as Normal, even if you have an issue.

I know we get stuck going to the GP so often with other health problems that we often feel like we can't cope with dealing with more stuff, or being brushed off and being made to feel like a time waster , but heart symptoms are not one of those things to delay action about.

Hope that my little bit of knowledge might have helped make things a bit less confusing , sorry I couldn't give you more definitive answers that's what the Cardiology appointment will give you , I've got my fingers crossed.

Good luck and take care , Bee

[Wendy39 in reply to Blearyeyed]

Blearyeyed

A very big thank you for taking the time to respond in such detail. It's so helpful.

I agree. It took my sister 5 years to get her diagnosis, with countless tests being normal. It was only corrected with an ablation.

So I know that heart conditions are difficult to pinpoint especially when they are intermittent and happen randomly.

I will definitely look at getting the device PMRpro recommends above.

Thank you again. I'm really grateful.

How are you at the moment?

Wendy x

[Blearyeyed in reply to Wendy39]

I have a Kardia device , it has made a difference to knowing what's happening when and allows me to show my Cardiologist the results in appointments.I know a few people with intermittent AF and other cardio problems that eventually invested in a Kardia device so that they could prove what was happening after many fruitless Holter tests.

The Kardia is a good option because it is also the device that the NHS use and provide to AF patients themselves now to help them manage their conditions. So , they can't gaslight you by saying there is a problem because of the device you use.

Double check the two approved by the NHS and then choose which type you want based on your budget.

I use a basic Smart watch to monitor my heart rate , activity and breathing only because none of these give completely accurate BP readings , especially for people with heart or health conditions that can cause Tachycardia or Bradycardia episodes.

Spending a fortune on an Apple watch would make no difference, it's not the make its the algorithms the results that are based on that cause the error.

A watch is worth having to track heart rate during work and exercise though , just so that you can note if it's getting too high and take a rest or breath to reduce it again as long as you don't get obsessed by the numbers.

Then I have my basic NHS approved BP cuff monitor for proper BP and pulse reading . And I take a result from both arms because sometimes there can be a variation between the two if my circulation is a little slow ,

As , unfortunately, much like an ECG a Holter won't show the problem unless you actually have the symptoms or an event while the test is being done, which is why I specifically did " poor man's " tilt tests at times I marked in my diary with my own cuff results so that proof of my Orthostatic swings in pulse rate were there in the clinically recognised way during Holters after having two unsuccessful ones.

I'm struggling at the moment because I'm a few days off my B12 injections and this triggers my heart and neurological symptoms , so hurry up Friday !

I'm just waiting approval for the Biologic injections for Migraines and I'm on supplemental oxygen now for my Cluster Headaches which has made a big difference to the severity and length of the pain even though I'm still having 5 a day they aren't taking me to bed all day anymore which feels like a huge success.

How are things going apart from the cardiac problem?

[Kevin53]

Brilliant advice. Phone an ambulance. I was working away from from home when my wife had chest pains in 2012. She believed it wasn’t serious. Luckily my daughter lived in the next village. She shot around, ambulance called. It was a heart attack and stents fitted next day with angiogram. 11?year later all goes well. 👍😊. Best wishes Kevin

[Wendy39 in reply to Kevin53]

Yes, I would definitely call an ambulance if it happened again. It's so hard when you feel so let down by your local health board in all aspects of my care. It's only my GP surgery who help me with anything at all.

[Dottie11]

Is the Cardiologist seen under insurance of the following? Highly qualified, 100% independent, unbiased and out of your NHS area ? Same thoughts re scan reporting. If it was someone suggested by Dr Kaul I would feel reassured. Could any symptoms be due to medications or interactions ? ie My Rheumatologist flagged the following " Clarithromycin might increase the risk of serious cardiovascular adverse effects when given with Hydroxychloroquine." Therefor my meds were changed. Good luck.

[Wendy39 in reply to Dottie11]

Hello Dottie11

Thank you for responding.

I live in Pembrokeshire and so an under the Welsh Health Board, Hywel Dda UHB.

This cardiologist was recommended by a lady in my support group.

I am seeing him with my health insurance cover.

I saw him at the private Sancta Maria hospital in Swansea and as far as I know he's an NHS Cardiologist in the Swansea and Bay UHB.

I hadn't thought that he may know the NHS cardiologist who reviewed my echo results earlier this year. It's possible that the NHS doctor had been borrowed from another welsh NHS trust, as Hywel Dda don't seem to have many doctors working directly for them these days, all only borrowed for 1 or 2 days a week.

I have discussed this with Dr K and will again in November. He said the report on the echo was reassuring. However, I have been thinking about his taking this as gospel - Dr K is probably judging this by the standard of cardiologist he works with in London. He works in a specialist lupus clinic. The cardiologists are probably more knowledgeable about lupus and the heart risks. Whereas I know that in most cases, we struggle to attract the cream of the crop here, for numerous reasons. I didn't find the letter reassuring at all. It raised more questions than it answered. And the fact that the doctor said she might have lupus and possibly LBBB but we'll do an echo in 12 months says it all to me. If you Google systemic lupus and LBBB it is clear that that is a VERY extremely dangerous position to be in, as any future heart incidents are more likely to be fatal with you do have LBBB.

I am formulating a list of questions now and will consider everything you've said.

Best wishes

Wendy

[Dottie11 in reply to Wendy39]

If you do not feel reassured I would pursue . All your points make complete sense. If you have built up a good relationship with the gentleman in Swansea maybe go back to see him. Otherwise look to cast your net towards Cardio/Lupus as you say. I had a similar issue with lungs. Finally I have the answer. Good luck.

[Freckle1000]

Hi Wendy,

Bit unwell and foggy headed here - and I very much don't claim to understand everything you've described in your post ( I'm unwell )

Just thought I'd share as a e.g.. for others out there - regarding what can happen with Lupus and a POTs diagnosis.

I was staggering around for many years with a dangerous narrowing in my Lateral anterior Decending artery - with quite a few visits to the emergency department, only to be told I was fine - which was incredible given the symptoms. Blue extremities- breathlessness- and what I now know was angina.

The short story is I have SLE and was misdiagnosed with POTs and sadly thought this was correct until things became quite extreme.

I've been told since by a cardiac nurse that a wrong POTs diagnosis is more frequent across the board nowadays. (Australia) I'm from a very small town - and not the only one which is statistically staggering.

I'd had basic stress tests - echocardiogram etc. But some anomalies were incorrectly fobbed off by my GP and probably others.

It wasn't until I received a - forgive me - hope someone knows the propper name of this test - a radiation - imaging MRi type thing that showed an image of my hearts profusion - that they clearly saw a problem and I revieved a long overdue angiogram - that also clearly showed the problem in black and white and I received the treatment I needed.

These two tests were definitive for me.

Anyway - I'll step off my soapbox now and I really really hope everything go's well for you.

X

Oh oops- another soapbox ps -

I also know what ER - medical system burnout is - had enough medical bullying to last 10 lifetimes. I also know what its like with heart stuff - to take a punt and stay home, just this one time instrad of seeking help - hope for the best.

I was lucky to survive one of these. Just too tired - too bullied - it was a needed repeat ER visit with the same problem over and over again and I just couldn't bring myself to do it.

I told a cardiac nurse about this after my heart issue was resolved. I was soundly lectured.

( with another nasty medical issue) it took some councelling to convince me - not to let the Bastards get me down - as I'd gotten to a psychological and practical point of not wanting to take on more medical trauma. It was a point where I had a clear understanding I'd probably die if I decided against further treatment- but in my calculations I'd really undersestimated the effects of the rancid megalomaniac personality disorders in specialists (and the system) and this aspect of me not wanting to go on. Thankfully I received the budge I needed and kept fighting.

Thuggery in the medical system is real and ultimately their problem. Don't ever intermalise it or take it personally.

[Blearyeyed in reply to Freckle1000]

I had the reverse with the same horrible effects.I had seen two Cardiologists and Echos, MRIs and Angios with normal results so it was brushed off as being part of my other illnesses or , the old gaslighting fallback. Anxiety.

Part of the problem , especially in the UK , is nobody is trained in diagnosing Chronic Dysautonomia or P.O.T.S, so even when I was having "poor man's" tilt tests at a Specialist Centre for Behcets they were not tracking my heart rate but testing me for Orthostatic blood pressure instead.

When I finally got brave enough and informed enough to ask if they could do the test properly the Orthostatic Tachycardia was there , and in fact by that point , my palpitations and breathlessness was so extreme I was on the cusp of Orthostatic Hypotension.

They wanted to send me to the Dysautonomia Clinic in London , but because I live in Wales and there clinic was in England they couldn't do it , and my Welsh Health Trust wouldn't refer me out of area to a clinic that they'd have to pay for.

Got to my third Cardiologist with 72 hour Holter monitoring and deliberately kept a very detailed diary when I did two "poor man's" tilts at very specific times of the day and also took my own cuff results.

But that Cardio and the Cardio Physiologist again had no working experience of assessing results for these types of condition and just dismissed it as Inappropriate Sinus Tachycardia ( which shouldn't be dismissed as it is anyway).

Requested a second opinion with a Cardio whom did have an open mind and experience of patients with cardio autonomic problems. Another 7 day Holter and an extended Echo in which I used the same methods , sent to a different Cardio Physiologist.

Finally got the diagnosis of Sinus Node Reentrant Tachycardia, a macro neurological issue, one of the mixed cardiac autonomic syndromes in the Chronic Dysautonomia conditions group causing symptoms similar to severe POTS.

By then though the condition had also started to cause me periods of intermittent Atrial Fibrillation and VT Arrhythmia. Finally on medications and not just Orthostatic protocols for activity and things were under control. They are holding off on Ablation because I also have EDS which could cause an issue with it working or healing.

Well, it was working, until I got B12 Deficiency Anaemia and unfortunately the two week period before my next injection and the last triggers all the symptoms despite the medications because my B12 is too low .

I was just like you and Wendy , the symptoms would get worse but I got so sick of adding to how bad it felt ,physically as well as mentally, by going to be checked only to be turned away with no diagnosis because they didn't know what to look for. There were a few times I crawled into bed and kept my fingers crossed that I would wake up in the morning.

There really needs to be much more training on these issues.

No one should just be diagnosed as having P.O.T.S without having the other cardiac problems ruled out by proper tests and cardiac imaging .

On the other side , nobody should be dismissed as having nothing at all and should get proper Cardiac Autonomic testing if the standard imaging and blood tests show a normal heart because these problems are just as disabling and distressing as other heart conditions to day to day activities.

Macro Neurological Cardiac issues and Autonomic problems do not show up in MRIs or Angios or in ECGs and Echos unless an event is triggered at the exact point you are tested , and these aren't usually done standing up!

I think we both need bigger soap boxes and need to start yelling together.

Better Training , Better Testing , Better Care!

Hope things are better for you now , hugs , Bee

[Freckle1000 in reply to Blearyeyed]

Mind bending isn't it. X

[Wendy39]

heart.org/en/health-topics/....

How's Left Ventricular Hypertrophy related to other heart problems?

LVH usually happens as a result of other heart problems such as:

High blood pressure

Diabetes

Heart valve problems like stenosis or regurgitation

Arrhythmias

Enlargement of the aorta

It's important to treat the causes of LVH early because it can lead to severe problems such as heart failure, sudden cardiac arrest and ischemic stroke.

[Wendy39]

Left ventricular hypertrophy usually develops gradually. Some people do not have symptoms, especially during the early stages of the condition.

Left ventricular hypertrophy itself doesn't cause symptoms. But symptoms may occur as the strain on the heart worsens. They may include:

Shortness of breath, especially while lying down

Swelling of the legs

Chest pain, often when exercising

Sensation of rapid, fluttering or pounding heartbeats, called palpitations

Fainting or a feeling of lightheadedness

mayoclinic.org/diseases-con...

[Wendy39]

This is very interesting, as it's directly related to lupus and LV enlargement, as found in my CT, although mine is only borderline enlarged.

Systemic Lupus Erythematosus Predicts Increased Left Ventricular Mass

Janice Pieretti, Mary J. Roman, Richard B. Devereux, Michael D. Lockshin, Mary K. Crow, Stephen A. Paget, Joseph E. Schwartz, Lisa Sammaritano, Daniel M. Levine and Jane E. Salmon

Originally published9 Jul 2007doi.org/10.1161/CIRCULATION.... 2007;116:419–426

Other version(s) of this article

Abstract

Background— Systemic lupus erythematosus (SLE) is associated with premature atherosclerosis and vascular stiffening. Whether SLE alters left ventricular (LV) structure and function in the absence of valvular and clinical coronary artery disease is unknown.

ahajournals.org/doi/10.1161...

[Wendy39]

What is an "echo correlation" that is recommended in the CT Report?

cho‐Echo Correlation (EEC) is a new technique which finds the auto‐correlation of the echo, independent of pulse characteristics, multipath, or target velocity. For a given probability of detection, required decision thresholds are much lower with EEC than with standard procedures. The ECC output is not distorted by unknown Doppler, yet target velocity is readily computed. The computations are easily carried out in the time‐domain, and the display load is greatly reduced. Two experiments using EEC have been completed.

pubs.aip.org/asa/jasa/artic...

[misty14]

I'm pleased Wendy you've got some good news from those results for your heart. I do understand how you must feel and why you feel so confused. The best thing is to have a list of questions for your cardiology appt which your lucky is quite soon. I bet you've prepared them already!. Do tell him your sister's problems as family history is very important. I too have tachycardia and have had the all clear from similar heart tests to you. I take a betablocker as have a chronic form of pericarditis which doesnt show on tests. I've recently tried to reduce the dose but had such a tight chest with pain i had to go back on the higher dose. It really does help with no side effects as the symptoms are similar to yours. I've had dizziness, palpitations as well as pain!.

The reason i said you are lucky your follow up appt is soon is because i've got a 6-8 month wait to see my gallbladder surgeon to talk about why he's suddenly added bowel surgery to my gallbladder removal op. Its hard having to wait so long wondering , just to ask some questions. Its so good your appt is early October.

I do hope it goes well and your happy with the answers. Keep us posted and TAKE CARE. Xx🤞💕🤞💕🤞💕🤞💕

[StriatedCaracara]

Found an August 2023 paper connecting increased left ventricular mass in SLE - with - decreased insulin levels.

researchgate.net/publicatio...

May explain why been getting hungry...is there a diabetes link even..

[Wendy39 in reply to StriatedCaracara]

Thank you very much! That’s a really interesting read! 💜

[MusicalFurbaby]

Hi Wendy, wow you have been through a lot! To answer your question, yes I have had chest symptoms where every blessed test has come back normal. It’s baffling, both for us as patients as well as for the doctors.

Please do call the ambo next time—I once had centralised chest pain as you described with extreme shortness of breath. I assumed it was muscular but my carer insisted on calling the ambo. I went to hospital and it turned out to be pericarditis.

But last year, I had a 6-month episode of extreme breathlessness and every test came back normal, including angios with dye, echos, x-rays, you get the idea. All the cardio could say was, ‘Come back every year for a repeat echo.’ It’s maddening!

All this to say, sometimes doctors can’t find a cause for our symptoms, but it’s still worth trying. Write down your symptoms for your cardio appt, along with triggers etc., and ask your questions. Take a support person if that helps. And please do let us know how you get on. 🌻