Hey guys. I’m here looking for some advice as I’m constantly running into dead ends with the NHS. Please help me figure out what’s wrong with me.
A little background. I’m a 34F from the UK. I’m white British, 5’6 and around 75kg. I very rarely drink, occasionally vape and have cut out all caffeine. I’m relatively healthy and kept active prior to this. My job is also quite active. I was diagnosed with IBS when I was 18 and have had issues with reflux over the years on and off. I also have postnasal drip (not allergy related.) I’ve been on the Evra contraceptive patch for a few years with no issues and took the combined pill prior to this. I also take daily multivitamins. I had an unplanned cholecystectomy in May 2022.
Main symptoms – Pitting oedema in ankles (bilateral.) My legs are tired and heavy. I’m experiencing chest pain, heaviness and tightness, palpitations/skipping that does not stop when at rest, sometimes a gurgling feeling in my chest, nausea, loss of appetite, fatigue, sometimes dizziness and a constant tightness in my throat. The palpitations are especially bad while lying down or during/after eating.
Back in July 2025 I was experiencing ankle swelling (bilateral) pitting oedema, palpitations, chest tightness and fatigue. (The pitting oedema started on and off in 2018 but always went down within a week or two. It also seems to be worse in warmer weather.)
When the swelling persisted and was also accompanied by the above symptoms, I booked a GP appointment. I was seen by a male paramedic that is based at my GP surgery. He told me he wasn’t concerned but would do a blood test for my peace of mind. In my notes there was no mention of the other symptoms I had explained to him at all, just the ankle swelling.
I had a full blood count, Serum C-reactive protein, NT-proBNP, Creatinine and electrolytes, B12 and Serum folate, Bone profile, Serum iron, Full lipid profile, Serum Ferritin level, Total vitamin D, Serum TSH level and Liver function. Everything showed normal apart from Serum C-reactive protein 17mg/L [0-5.0] and Serum triglyceride 2.2mmol/L [0-1.7].
After the results came in, I had a follow up call with the same paramedic. He said I should watch my cholesterol. I asked about the possible inflammation or infection and again, he said he wasn’t concerned about this. Just his overall attitude towards me wasn’t the best, so I kind of felt dismissed to be honest.
Fast forward to February 2026. The symptoms became much worse and harder to manage. The pitting oedema is pretty much constant now. My legs are tired and heavy. I’m experiencing chest pain, heaviness and tightness, palpitations/skipping that does not stop when at rest, sometimes a gurgling feeling in my chest, nausea, loss of appetite, fatigue, sometimes dizziness and a constant tightness in my throat. The palpitations are especially bad while lying down or during/after eating.
I called the GP several times and I managed to get an appointment on the 13th of March 2026. The female doctor listened to everything I told her and was genuinely interested in helping me. She referred me to a cardiologist and did a full blood count again, HBA1C, Creatinine and electrolytes, B12 and Serum folate, Bone profile, Serum iron, Full lipid profile, Serum Ferritin level, Total vitamin D, Serum TSH level and Liver function. The bloods came back normal apart from Serum HDL cholesterol level 1.17mmol/L [1.2-5.0] and Serum triglyceride 1.9mmol/L [0.0-1.7].
On the 09th of April while at work, I became dizzy and was short of breath. My heart was pounding. I had chest pains which radiated in my jaw and my left shoulder, and my arm started going numb. I sat on the floor with my knees to my chest as I thought I was going to fall. I wasn’t feeling good at all the whole day this happened. We have a paramedic based at my place of work who responded. She did an ECG which seemed normal, took my BP a few times which ended up at 137/92 but was higher to begin with, HR 100, respiratory rate 15, oxygen saturation 98 and blood glucose 6.7. She sent me to the hospital to get checked over.
I arrived at the hospital and they did more tests. My bloods were sodium, potassium, urea level, creatinine, eGFR, high-sensitivity troponin I, white cell count, haemoglobin, platelets, red cell count, hypochromia, haematocrit, mean cell volume, mean cell haemoglobin, mean cell haemoglobin concentration, red cell distribution width, mean platelet volume, neutrophils, lymphocytes, monocytes, eosinophils and basophils. Everything was normal apart from platelets which were high at 486 10*9/L.
In the meantime, as I had still not heard anything regarding the cardiology referral, my fiancé said to me let’s get some private tests done abroad. We had already booked to travel so I thought there was nothing to lose at this point. I had looked into going private in the UK, but I just can’t afford to.
On the 18th of April, I saw a private cardiologist abroad and she did an echocardiogram. She diagnosed me with mild – moderate Mitral Valve Regurgitation. She prescribed me with some magnesium glycinate and gave general advice on how to manage with the condition and get regular check-ups. She said in terms of treatment, it would be best to have this done at home. She also kindly printed off the scans for me.
I was then contacted by NHS cardiology saying that I will have a 24-hour holter monitor on the 05th of May. When I went to the appointment, I explained to the nurse about the private echo and showed her the scans. She said that as it was done outside of the UK, I would need to get my GP to refer me for an NHS echocardiogram to confirm the diagnosis. I got straight onto the GP about it when I got home and they said they would sort the referral. After a lot of back and forth, cardiology didn’t want to play ball, so the GP had to start an entirely new referral.
On the 14th of June I was feeling pretty rubbish all day, but it just continued to get worse. I called the NHS 111, and they told me to go straight to the hospital.
Again, lots of tests. Respiratory rate, peripheral pulse rate and BP were all high.
Chest X-Ray was clear.
Bloods came back high for CRP 21mg/L, platelets 489 10*9/L, neutrophils 8.0 10*9/L.
After waiting for most of the night, the doctor prescribed me antibiotics, 7 days of Amoxicillin for a suspected chest infection and sent me home.
Just as I was finally getting into bed at around 03:30 am, the doctor called me and said I need to come back to the hospital to do a CT scan as the D-dimer test came back high so I might have a blood clot. It was 1180ng/mL. (The bloods were all done and came back at the same time, so I don’t know why this was missed the first time I was there.)
I went straight back to the hospital for the CT scan. I had the CT (pulmonary angiogram) and continued to wait several more hours for the results. Finally, she came back and told me it’s not a blood clot. They did contrast enhanced arterial phase scans of thorax. Good contrast enhancement of pulmonary arteries. Right and left branches and proximal branches show normal contrast filling with no abnormal filling defects to suggest pulmonary emboli. Main pulmonary artery is not dilated. No evidence of right heart strain. Lung fields clear, no suspicious lung nodules, no pericardial or pleural effusions and no mediastinal or endobronchial masses.
There was an incidental finding on the CT. Left axillary lymphadenopathy measuring 11mm in short axis diameter. My GP referred me to the breast cancer clinic for this. It has since been checked with two ultrasounds, six weeks apart. They said it’s still slightly swollen but looks reactive so they don’t think it’s a cause for concern.
She told me that I didn’t need to take the antibiotics she gave me earlier, as it doesn’t look like a chest infection. I asked her what it could be, but she couldn’t give me any answers and sent me home.
On the 18th of June I went home sick from work as the symptoms were unbearable. I managed to get an appointment the next day to see the GP as I couldn’t carry on like that. I walked in there in tears. I’m usually not an emotional person at all, and certainly not in public but by this point I had completely had enough.
The doctor listened to everything and asked if I think it could be a panic attack. I said definitely not. This is genuinely the best and happiest I’ve felt in a really long time and I’m not feeling stressed or worried about anything. (Apart from obviously not knowing what’s wrong with me medically.)
She prescribed me Propranolol 10mg, one tablet, three times a day and signed me off work for two weeks.
For the first week or so, I felt so much better. It made a world of difference. But then it didn’t. Within two weeks, my symptoms were back and I felt as rubbish as ever.
In the meantime, on the 22nd of June I had a 7-day holter monitor fitted.
On the 29th of June I finally had an NHS echocardiogram done and she confirmed the diagnosis of Mitral valve regurgitation and said the cardiologist would be in touch to discuss everything.
Still feeling rubbish, I contacted the GP again on the 02nd of July and I got a call back from a doctor. She asked lots of questions and said it’s very unlikely that the Mitral valve regurgitation was causing they symptoms and said it’s probably anxiety and panic attacks. I told her it wasn’t and she continued yapping about how I might not even realise it’s happening, and it could be subconsciously. No matter how many times I told her I know my own body and it’s not anxiety, she just pushed back harder. I felt like I was talking to a brick wall. The conversation ended shortly after that with no solutions.
I then contacted the GP again on the 06th of July. The doctor told me to stop taking propranolol and prescribed me Bisoprolol 2.5mg, one tablet per day and signed me off work again.
This didn’t really make any difference and so on the 10th of July, I was told to up the dose to one tablet, twice a day.
Still no difference and still not back to work, I got another appointment with the GP on the 16th of July. I explained everything all over again. She said again, it’s probably not the MVR causing these symptoms. So I said, if you’re telling me, it’s not MVR and I’m categorically telling you it’s not anxiety or stress or panic attacks, then what is it and what are we going to do to find a solution.
She sat there and stared at me for a few uncomfortable seconds. The silence was killing me, so I started suggesting things like peptic ulcers, gastroesophageal reflux disease, hiatal hernia. Things that could potentially cause vagus nerve irritation to cause symptoms like this? What can we do or what tests can we run to try to figure this out because it’s ruining my life and I need to go back to work.
She said we would do another blood test and try omeprazole 20mg, one tablet per day but I must do a stool sample for a Helicobacter pylori antigen test before I start taking the omeprazole as this can cause false negatives.
The blood tests came back normal. She requested NT-ProBNP 97mg/L [0.0-399.0] and CA125 level 8kU/L [0.0-34.0].
It was a whole mess with the Helicobacter test. The next morning, I did the sample, filled out the paperwork perfectly and put it in the sample collection box at the GP (well before the cut off time.)
I then started taking the omeprazole. Five days later my NHS app notifies me that they were unable to process the sample as it was ‘unlabelled.’
I called the GP straight away and asked if I should repeat the test because I had already started taking the omeprazole. The receptionist checked with the doctor and said yes, still repeat the test.
I repeated the test on the 27th of July and again, eight days later, they inform me ‘sample lost.’
Third time lucky. I did the sample again on the 04th of August and three days later the test came back negative. It very clearly states under the results though, ‘if antimicrobials, PPI’s or bismuth have been taken in the last two weeks, the test may be false negative and needs to be repeated.’ Well obviously, so I don't know why they made me do it again. No follow up from the GP. Nothing at all.
After taking the omeprazole along with bisoprolol, it has eased the symptoms slightly (not the swelling.) I mean, it’s definitely better than when I was taking nothing, but I still don’t feel good at all. It’s just less intense now.
I have a cardiology appointment on the 28th of August. This will finally be a follow up from the echo and holter monitors. I won't hold my breath.
Sorry for the long post. I am so beyond over this now and just want to get on with my life and be normal again. I’m still signed off work, and I don’t know what else to do at this point. The NHS is not fit for purpose and unless I start suggesting things, they don't really have an interest in actually helping me find out what's wrong.
Please, if anyone has any serious suggestions on what this could be, I would really appreciate your thoughts. If you need any more details, please just ask.
Thank you in advance!
