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British Heart Foundation
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23 year old with severe undiagnosed symptoms, keep getting worse, need input. Extensive medical workup provided. Thank you.

I am a 23 year old male, 5ft8 and +-70 kgs. I have always been very active, working out at least 10 hours a week. About 10 months ago i noticed chest discomfort and shortness of breath for the first time while doing some light work around the house. Since then, these symptoms have gradually gotten worse over time to where i can no longer do any sports, can hardly walk, and have trouble breathing when lying down. Also, even the slightest consumption of alcohol makes symptoms a lot worse, not immediately, but with a delay of +-2days. The main symptoms are:

Shortness of breath

Tight/pressure feeling in (upper) chest going into my throat. Sometimes feeling like something is stuck in my throat

Tight/pressure feeling between shoulder blades

Inability to exercise, symptoms worsen significantly upon physical exertion

Easily tired

Bad recovery (used to be a track athlete, monitored my heart rate (recovery) for several years. Seems significantly worse now).

I never had any troubles with anxiety, but this was the first 'diagnosis' i got. Since then i've seen 3 independent therapists/psychiatrists, all of which have cleared me for any mental health issues after 20+ sessions with each of them. During treatment I was given Zoloft for 4 months and Xanax for several weeks after. Neither of them had any effect on symptoms.

Additionally i've had an extensive medical work-up;

- Heart:

Standard stress test

Cardiopulmonary exercise test

Electrocardiogram

Echocardiogram

Perfusion MRI

Intrusive coronarography

Chest CT

The most noteworthy conclusions here were a dilated left atrium, extremely low VO2-max despite having a very active lifestyle shortly before symptoms started and a flattening O2-pulse and disproportionally increasing heart rate at the anaerobic threshold during cardiopulmonary exercise test.

- Gastroenterological

2x endoscopy

Manometry

24h ph test

These revealed relatively mild GERD and a small hiatal hernia. After treatment with pantomed 40mg for several weeks these issues resolved, but symptoms stayed the same.

- Lungs

Tested for asthma, negative

- Brain, neurology

Bran MRI

Several other test for neurological diseases.

All normal.

- Muskoskeletal

Several chiropractors, physiotherapists.

Was checked and treated by several therapists. Did not seem to help and could not give me a clear diagnosis. Didn't find any severe problems.

- Hyperventilation

Ruled out by blood tests several times.

Treatment by a certified hyperventilation therapist for 4 months. Ruled out hyperventilation as a cause.

Followed several courses focused on breathing (mindfullness, meditation).

My doctors have been wonderful and provided my with an extensive medical workup. However they don't know where to turn next. My situation is still deteriorating to where i had to quit my job and moved back in with my parents as i can no longer take care of myself. If any of you have any suggestion or thought, please consider leaving a comment. I am truly desperate. I'm starting to lose hope, as i'm completely unable to have an even remotely normal life. I hope anyone takes the time to read this and try to help me. Thank you all very much in advance.

16 Replies
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Hi. When you say you had blood tests. Which ones were they? I know someone who was finally diagnosed with hyperthyroidism and given medication which now helps him. He had a few incorrect diagnoses of various things before that. I think young people constantly face that dilemma. Ask your GP about your blood tests.

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Thanks for your response! I've been to the ER a few times where they did some bloodwork. Additionally, i've had the general workup for vitamin deficiencies, lyme's disease, eppstein barr, etc. I think they checked my thyroid as well, but i'll be sure to check again. Thank you very much!

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Your very extensive workup makes a physical cause for your symptoms very unlikely. However, your symptoms are real and if you want any form of normal life you must learn to cope with them. Unfortunately the less you do the less you can do as all your muscles atrophy, so inactivity is making the situation worse. It is no surprise that your heart rate recovery is worse than when you were active.

I certainly suggest you don't go back to intense workouts, but a programme of very gentle walking, gradually trying to do a bit more each time would help.

The worst thing you can do for yourself is to withdraw from any effort and indeed life itself for fear of your symptoms.

If alcohol makes you feel worse don't drink alcohol!

All the best

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Hi, this must be very worrying for you.

The symptoms you've described are very close to the situation that I have just gone through, however it appears they've done a lot of tests.

For me, over the last few months I had slowly noticed my throat hurting a lot more, and i assumed it was stuff in my throat from my nose as I could clear it and it would feel fine.

This would gradually get worse, and I would have moments where it felt like I had brain freeze, eaten to much and had just necked a vodka, and it would pass in about 5 minutes. Over the easter weekend it started to get a whole lot worse after I had done some gardening.

I went to a GP drop in centre last tuesday, and he looked at my throat. He asked about my medical history, and family history.. my father had heart problems in his early 40's, and I have high blood pressure, so these raised red flags, and i was referred to A&E.

I sat there for a long time, but they took a blood test and the troponin levels were slightly elevated at 24. They kept me in over night and retook this test the following day and it had moved to 48, and then to 80. This prompted them to do lots of ECG, Echogram etc.

I then had a cardiogram performed on Thursday and they discovered that there were a number of problems with the arteries and the result was I have had 2 stents fitted last week and this.

The pains i was having have now gone, and they have confirmed I had a small heart attack and it was angina.

I assume from all of the tests you've had that you got the troponin levels, do you know what they were?

During the 2nd surgery I felt the same pain as they got to the area they worked on.

I know how how much of this can be a worry as well.

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He has had an echo ecg and angiogram which were all normal, so this has been ruled out.

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I think when you have had all those tests it's hard to know where to turn. I had a medical mystery no one could figure out and I was referred to a department called clinical infections, they deal with rare and tropical diseases and they basically gave me blood tests that you would never even know existed and considered things such as fungal infections in the body etc. Not sure if you are in the U.K. But if you are GP can refer you as I know they are not in every hospital.

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Forgot to add they are very good in a sense they will admit you and monitor you to try and figure out what's wrong if they need to or your situation is getting worse.

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In an amazing coincidence, i went to the ER shortly after i posted this message to the forum and after a year they referred me to that same department. When i got home i read your message. Thank you very much for your input! I look forward to their expertise as well. I hope things did turn out okay for you! thanks again

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Wow just seen this, what a coincidence. I hope they can get to the bottom of your medical problems if anything they are the best for that x good luck

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Hi. It must be so frustrating and worrying for you not getting answers. I think it’s important that you keep persisting. Just because a test comes back negative doesn’t mean there’s nothing wrong it just means that test is negative. I hope that makes sense! Other possibilities to have investigated are autoimmune disease and allergies but I think chevidaniels idea is great in that the tropical disease guys look for things that are very rare indeed. Take care and stay strong and positive. Zena x

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Try Lyme disease! Symptoms match!

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It's your GERD I have it , exact same symptoms and treated with zantac /ranitidine,change of diet and meal times , never eat after six or 4houra before lying down.

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It’s worth asking your medics if they’ve checked you out for Pericarditis. It took over a year for my case to be diagnosed and it was only after an astute cardiologist spotted that my pericardium (membrane around the heart) has thickened (he compared several ct scans) had thickened. Later I started getting other Pericarditis symptoms inc pericardial effusions (excess fluid on my heart).

Hope you get sorted soon.

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Try and find a flat path or road that you can gently walk along for 30 minutes every day, avoiding hills if you can, just to keep you ticking over.

You may find a visit to a BANT registered nutritionist useful to see if there any improvements or changes to your diet that can be made?

Have you been to any foreign places on holidays? As the climate is warming insects carrying exotic bugs are moving north, tiger mosquitos in Spain,etc.

Patience is a wonderful virtue . You may need a few bucket loads before you get sorted, but doctors love an 'interesting' patient so you will get a solution, but it may take time. Best wishes.

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Has your vitamin B12 level been checked? My friend's daughter had some similar symptoms for several years at a similar age before being diagnosed with advanced pernicious anaemia.

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Hey! I’m so sorry you are going through all this, maybe it could be something autoimmune? I’m not sure but there are many autoimmune diseases that do mysterious things. You could try seeing a Rheumatologist? I’m not sure what the test is called but have you had the breathing test they typically do it at a pulmonology office? You breathe into a long tube? It tracks how the air is getting in and coming out of your lungs. I will pray for you! I know how distressing it is to have an undiagnosed health problem (I’m 22 and also am trying to figure out my health). If you need anyone to talk to I’m here!

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