5 cardiologist but no definite diagnosis.

Posted by kburgos @kburgos, May 17 3:48am

Hello all. I'm sorry if this is long but I'm going to try and put as much information as possible.

I'm 33. I am 5'7" and weigh 104lbs. No caffeine in 13 years. Don't drink. Stopped smoking cigarettes and switched to vaping 3 years ago. I was born with dislocating knee caps, was checked for ehlers danlos but it was negative. I've been diagnosed with anxiety/panic disorder, bi-polar type II, and ptsd.

I have recently had: An mri of my brain which came back fine.
Xrays and CT of chest to check heart and lungs. Both good.
Nerve testing on hands, legs and feet showed I have osteoarthritis.
Negative for celiac disease. Negative for hyperthyroidism. Negative for diabetes. Negative for any sexually transmitted diseases. Normal pap smear.
Blood test show low vitamin D. (I'm now on supplements.)
Low lymphocytes and high chloride.
Everything else is in normal range. I have done many blood tests with and without fasting in the last year.
I had a constricted urethra which was stretched. Used to have recurring uti's but am now fine. He did say my bladder looked "angry." Whatever that means.
I failed my spirometry test. Dr. Said I had the lung function of a 60 year old chain smoker.
Ive had a mammogram and breast biopsy done which was benign and normal.

Tests I have coming up:
Tilt table test for "Pots."
Pulmonary function test.
ENT for deviated septum and left ear congestion.

My current symptoms: Fatigue, dizziness, muscle weakness, heart palpitations/irregularities, anxiety/panic attacks, shortness of bteath. (The shortness of breath and severe anxiety started the day after my EP study on Feb 5th and I've had it ever since which is why they are doing a pulmonary test.)

Current medications: Vitamin D3, SlowMag (Magnesium/Calcium), .25 Xanax when needed (Which I only take half of one once a day.)

So! Now that you know all that, let's dive into my heart issues.
Symptoms: First started when I was 28 while lying in bed. Noticed my heart skip a beat a few times. Googled it and figured it was nothing. Heart beats irregular when I lay on my right side. Not on my back or left side. When I bend over or sit in a slouched position I get heart palpitations. Also when I eat a large meal. My heart skips a beat and then thumps really hard one time, sometimes that one hard beat even affects my vision for a split second. I belive it's called a PVC.

Tried to get it checked out. Nothing was found.
2 years later at age 30 I went to the hospital for an unrelated problem, they asked if I could feel my heart palpitating, I told them it happens frequently. (At least a few times a day.) They admitted me for 7 days.
Two cardiologist monitored me. Stress test was performed and was normal. Chest xrays, blood tests, normal.
Echo, normal.
One of the cardiologist diagnosed me with afib and put me on a heart medication, the other disagreed and took me off the medication the next day and said it was SVT and wanted to give me an ablation.
I didn't get it. Moved to OH.
New heart doctor. Gives me an event monitor for 2 weeks. Had a lot of issues with device due to "poor skin contact." Inaccurate results.
He sends me to an Electrophysiologist who says those aren't reliable and I need a loop recorder implanted. Went to get one put in and was told I was scheduled for an ablation that was never discussed in office not one time. A mistake was made somewhere. They canceled the whole appointment and sent me to yet another Electrophysiologist.
This doctor did an EP study on me. He said he was VERY aggressive during the 4 hour procedure but could not get my heart to go into afib and felt an ablation was unnecessary.
He implanted the loop recorder. He said no afib has been seen on it since.
He did say I had a small extra p wave but he's unsure as to why. He did a light chains test and blood work to see if it was covid related. Both negative.
He just started 4 months ago but has now resigned.
Current heart doctor, I was crying before she came in. I told her it's been 5 years, I've seen 5 cardiologists and still no answers. She went through all my records. I asked her "in your honest opinion, do you think I have afib?" She said no.
I then asked her "could anxiety and panic attacks cause all this?" She said absolutely.
She did say that I have Bradycardia and Tachycardia which is why she's sending me for the tilt table test as I have been told before that I have the symptoms of pots. She also said she can't find any records of my loop recorder.
I have been to the ER too many times to count in the last few months and each time I go everything comes back perfectly normal and they do it all each time. Chest xray, blood tests, ekg, monitor my HR, BP and heart rhythm.

So after all this, if you're still with me, how is it that I've now seen 6 cardiologist from FL to OH and not one of them have a clue about what's going on with my heart? Is it true that anxiety can cause this many heart irregularities throughout the day? Have any of you had this much trouble getting diagnosed? Does this sound like afib to you?
With my understanding, afib is a progressive disease that gets worse with time. My symptoms have been the same for 5 years. Sometimes I barely notice it, but never has it gotten worse.
I know I'm very underweight at the moment, this is something my doctors have been trying to figure out for a year. I lost 22lbs suddenly with no explanation as to why and no matter how much I eat (and I eat a lot) I can't seem to gain it back. He's sending me to a nutritionalist.
I can feel my heart beat all day everyday, but I think that's because I have no fat left and barely any muscle. I just feel as if I'm withering away and I generally feel unwell.
I guess I'm more so trying to find out how afib really is from actual people and not just from what I read on the internet. I spent 5 years telling everyone about my afib (dr.s and my job) and worrying just to find out this whole time it may not even be afib! This is my heart .. what if I completely stop worrying but something is actually still wrong? I'm just at a loss.
I am also seeing a psychiatrist and want to start medication other than just a temporary fix like xanax but without knowing what's actually going on with my heart, it's hard for him to prescribe anything cause a lot of the ssris and anti anxiety medication cause heart irregularities, so those with existing heart problems typically have to avoid them. So in short, I'm scared to take anything because of my unknown possible heart problem.
Thank you to anyone who may respond. Even if no one does, it feels nice just to get it all out there.

Interested in more discussions like this? Go to the Heart Rhythm Conditions Support Group.

The first thing I noticed right away was how underweight you are. That would seem to be your biggest problem and may have effects throughout your body, who knows.

The second thing that jumped out at me was how much medical care you have had. Admittedly, I am a believer in "slow medicine" but as you can see, all those tests and appointments haven't gotten you anywhere and must be exhausting and frustrating.

ps In my experience being underweight may have caused some imbalances (electrolytes, nutritional, hormonal?) that might have contributed to my PVC's. A functional medicine doctor (integrative, naturopath, whatever you want to call it) was the most helpful.

I get episodes of afib with heart rate in the 190's. I go to the ER, but I know it is not life-threatening. Rather than have a lot of tests, I suggest you buy a Kardia monitor ( I have the 6 lead but the 1 lead is fine- $79) or a smart watch. It may be reassuring. It sounds like you have a lot of PVC's. When I was in my 20's and 30's I did too-mostly related to hormones (before period) and also a time when I was underweight. Maybe keep a calendar and see if the PVC's are worse before your period (if you are having it). I know how hard it is to relax with these but all my docs kept telling me PVC's aren't dangerous so meditate on that.

A few ideas from my own experience: I would cut out the vaping if you can. No caffeine either. Consider giving up dairy and gluten or work with a dietician on an elimination diet. Tai chi and Quigong have helped me a lot (yoga is tough for those with loose joints).

When you do the POTS tilt table test, make sure the nurse or doctor waits...the heart speeds up some seconds after you are raised up and in our experience the nurse looked away too soon!

Maybe an SSRI will help your PVC's by reducing anxiety? I would think peaks and troughs of Xanax might cause some rebound at times but I don't know- again from my experience with Klonopin. I have tried, instead, melatonin or CBD for sleep.

Have you had a Lyme test?

Do you have a good PCP helping you coordinate all this? I wonder if it is possible to reduce medical tests and appointments. Maybe a functional medicine doctor could help you achieve a more natural approach. And dietician is good.

Did the endoscopy test for celiac? Yeast?

I know people who have had a period like this who have come through and been healthier. I really thinking the first order of business might be your weight loss. What does your doctor say about that? So sorry for what you are going through. Sorry this is so rambling!


Agree largely with windyshores. Vaping is bad....period. Study released just Tuesday says so, and no study I have seen over the past ten years has hinted that they have it all wrong and that it is, amazingly, good for you! I think it's screwing with your endocrine system. I believe your circumstances to be almost entirely endocrine-related.

You may have Vagus disfunction. It's worth considering because of the problems you have with bending over, eating, cranky heart lying one way and not during the other way, etc.

You are actively seeking help, so you're not 'broken', and you're willing to learn...that's very positive. You will have to accept some changes to your habits, though...I'm pretty sure this will be the key to your success.

If you have the odd extra P wave, then SVT is possible, but not PVCs. More likely they are PACs (premature atrial contractions). The heart skips a beat, and then compensates with a real thumper, which you feel.

And lastly, yes, unfortunately, anxiety can exacerbate heart irregularity. You may need a recourse to anti-anxiety medication once or twice a week before sleep so that you CAN sleep. Being substantially underweight means I can't in good conscience suggest exercise, aerobics. Cycling...maybe if you don't push it too hard. Cycling isn't weight-bearing, so it won't be so demanding calorifically. The point is that many, many, studies have demonstrated convincingly that walking, cycling, running, hiking, rowing...they greatly improve cardiovascular and pulmonary function, but they also greatly improve both sleep and mood.

I hope somebody reading here has much of your experience and can share what they did, and what worked for them.


@kburgos just want to say that @gloaming has a lot of experience and knowledge about heart arrythmias.

Keep us posted!


I hope you can get some peace.


I think there are a number of issues going on with you. Separating it is a bit like a ball of string that the cat has played with. I think it is clear that you are dealing with a great deal of anxiety. And that may be interfering with you making good decisions for yourself. If you are anxious and bipolar and PTSD then a good psychiatric evaluation is in order. Very low dose Xanax which has a half life of 4 to 6 hours will do nothing for anxiety. Also there is nothing normal about being 5'7" tall and weighing 104#s. You didn't say what you eat but clearly you are not getting enough nutrition. You say you eat a lot but "a lot" is subjective and that doesn't mean you are eating well or enough. That said dysbiosis is a medical problem where a person does not absorb or digest their food correctly. That can lead to a whole host of problems. Having stool testing and blood work can go a long way to understand you nutrition and weight problems as well as other medical problems. A nutritionist cannot help if your G.I. tract is sick. You need testing for that. You smoke whether it is cigs or vape doesn't matter hence you poor lung function as well as other problems from inhaling smoke. There are 2 kinds of cardiologists 1. is a plumber 2. The other is an electrician also called an EP for electrophysiologist. You need an EP for your rhythm issues but you also need a holistic approach to your medical care because you present with so many issues. All your rhythm issues can be coming from any number of problems including stress, diet or lack of diet, smoking as well as sinus node problems that cause misfiring. You may not even need an EP. Nerve testing does not diagnose osteoarthritis. X-rays and CT scans are used to determine what if any arthritis is in your joints. Low lymphocytes and high chloride sticks out. High chloride indicates possible electrolyte issues and dehydration. Low lymphocytes is another issue that is of significant importance revealing your body is inflamed and maybe fighting an illness or is a symptom of an illness. You describe getting palpations after eating a lot or slouching over. That could be a separate problem with vagus nerve stimulation. I had a lot of problems like that and eating slower and avoiding positions that set it off can help. But that is only one of many things going on.
I think you have had very poor medical care and or you are running around seeing to many doctors at different places looking at a single issue: instead of finding a comprehensive doc looking at everything. I see you are set up for a lot more testing some of which you already describe as having. Western medicine is not good at looking at the Whole person. Hence we have a lot of specialists which can be part of a good thing. But what is missing is someone to put together the whole puzzle.
I agree with windyshores about seeing a functional medicine doctor who will look at the whole person is something to strongly consider. Most if not all functional medicine docs do not accept insurance as they need to spend a lot of time with their clients and insurance doesn't cover a lot time so you have to pay out of pocket.
Cleary you need better medical care. Getting your stress/ bi-polar with PTSD under control is an absolute must for you to progress. That would hopefully be a start and a place to move forward. As for all the chest palpations you are talking to a lot of people who have heart problems and are here because of those problems causing palpations. The causes of palpations are numerous. They are uncomfortable and disconcerting and very distracting to a person already under stress. But I hear you writing about a lot of issues that are not necessarily cardiac in nature but may be contributing to your cardiac issues. Getting diagnosed with A-fib is not a difficult problem unless it is very intermittent...... comes and goes quickly. But even then if can be found. But none of us has the education and ability to put together what is happening to you. We are all listening and feel for you. Just focusing on your palpations here is not going to cut it when it comes to all what you are presenting. I am not being critical of you. I hope I am just giving some critical thinking about what you are presenting and the journey you are on.


maybe ashwaganda tablets? I have heart irregularities due to enlarged heart muscle, birth defect -bridging- and Brady and tachycardia--have prozac if needed. I take the ashwanganada to relieve anxiety.


Sounds like you have been through it all. I’m sorry you are so young and have already gone through so much. I am 83 years old and it also took five doctors and five different diagnoses to discover I actually had HOCUM. If you can, I suggest you go to the best cardiology clinic you can afford, somewhere like Mayo Clinic or Cleveland Clinic or a university heart clinic. In addition, I applaud your decision to stop smoking. However, vaping has been shown to be very damaging to lungs. You might want to revisit and explore vaping considering your unique problems. Best of luck.


Have you got in your thyroid checked out you might have overacting thyroid. Or you might have Addison's it might help you if you get a primary doctor in the doctor your primary doctor start doing this on you and might help you if you start taking something called the hydrocortisone that might help you gain weight. You might try to go to a GI doctor too and start doing tests with the GI doctor and you might want to go to a primary doctor they might start doing test with your inner chronology and GI doctor cuz when you're an endocrinology off is when you're t your thyroid 🙏🙏❤️❤️❤️ and make you feel like you're having anxiety if you're thyroid is off. Thyroid is off it can make you feel like your heart is racing.


You might try to work compressive socks and try to up boost your liquid string Gatorade Powerade a drink water get those hydrating sticks to put in your liquid at your liquids to put in your bed put in your mattress. Eat more salt in your area but Google primary internal doctors find an internal medicine doctor start working with internal medicine doctor and they can help you the best they can start doing tests and they could probably help you figure out what's going on. Jumping around from cardiologist to cardiologists not a good idea because they don't know what's going on I would just try to stick with one and try to see what test I can do and let him do all the test and probably get a good internist medicine primary doctor that can do all the test too ask her to check her diary ask her to check you for Addison's disease and all that. Have they checked your iron too it could be low on iron. 🙏🙏🏊🏊🤽🤽


Might be lacking magnesium cuz that can cause irregular heartbeat and you might be a low on potassium or too high over potassium. Now can be causing irregular heartbeat too. try find somebody that might does.Biofeedback . Might want to try your wedge and under your bed. Primary doctor and they can order as patch easy patch for you z patch that you can wear it for 3 weeks it's like a big sticker you there's instructions and extra sticky things to see if there's any thing going on with your heart. You might want to get a blood pressure cup and lay down automatic blood pressure cup and lay down for 15 minutes and take it and then sit up and take it and then stand up if your blood pressure falls and your heart rate goes up you might have pots but make sure you're well hydrated before you do your blood pressure. Hope you find the answer is you're looking for and hope you find a good primary doctor. 🙏🙏🙏😇😇😇🤔🤔🤔

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