I finally have a diagnosis for Long Covid and it’s shocking
Why a diagnosis took 11 months and 4 days to find and why it’s so medically baffling
A quick reminder of my current symptoms (since Covid, March 2020)
- Shortness of breath and tight chest when walking / talking / bending over (currently more than 20/30 minutes).
- Exercise intolerance + post-exertional malaise (worsening of symptoms after minor physical or mental exertion).
- Random heart ache.
- ‘Storm in my lungs’ and heart pain after talking, walking and bending.
- Palpitations when standing and during movement.
- Other improved but still ongoing symptoms — insomnia, loss of appetite, acid reflux, Long Covid related PTSD, anxiety and depression.
Thursday 11th February 2021: a day of specialist tests at The Royal Brompton
On the 11th February, I was given the full ‘MOT’ of tests at The Royal Brompton Hospital — the country’s best specialist lung and heart hospital, under the referral of the internationally renowned lung specialist and Head of Brompton’s Covid Recovery clinic, Dr William Man. I’m part of his clinic and study of 100 of the worst respiratory Long Covid cases.
They involved a variety of specialist lung function tests, a CT scan, a specialist CT scan (called a dual-energy CT pulmonary angiogram), a 24/7 ECG, specific blood tests plus the basic’s (ECG and baseline bloods).
The lung function tests were interesting —I wondered why my previous respiratory specialist hadn’t given these to me or why I hadn’t heard of other long haulers having them. They included: a capillary blood gas test, peak flow test, spirometry and a gas transfer test (also known as lung diffusion).
The specialist CT scan (dual-energy CT pulmonary angiogram) was pretty full on. I was injected with a special dye and they had warned me to expect ‘possible nausea and a feeling that I was going to wet myself’ from it. How strange I thought.
Anyway, in I went — into this white looming CT machine. Good job I wasn’t claustrophobic. And indeed, I felt like I was well and truly wetting myself and that my entire body was on fire. My heart was beating so fast — a clear “WHAT the hell have you put inside me”, my body screamed. I definitely thought I was going to pass out but surprisingly I didn’t. Apparently it was all a normal reaction and it was over in thirty minutes.
Experiencing these severe physical reactions triggered instant flashbacks from traumatic Covid episodes, overpowering adrenaline and the same feeling that my body is fighting for it’s life — classic PTSD.
Though, mentally I knew that I would be fine and it was ‘just a scan’, at that point, I realised even more how traumatised my body really was.
Throughout the scan, I repeated affirmations to my heart and lungs — “this scan is helping us”, “this scan is helping our recovery”, defusing the anxiety and PTSD that had just arisen.
I could handle the tests. The hard part was waiting for the results, though thanks to Dr Man I only had to wait for half a day…
Friday 12th February 2021: “we need to test for heart damage”
The next day, I waited for the video call with Dr Man. One minute felt like ten minutes. My heart was beating out of my chest. I had waited nearly a year for a diagnosis. What if they find nothing? What if what they find is too much to bear?
The video call finally came.
Dr Man told me the following:
“The good news”
- The CT scan was clear — I had no damage to the lungs and it showed no evidence of lung disease (a BIG PHEW to both!).
- The dual-energy CT pulmonary angiogram showed no evidence of pulmonary emboli (blood clots in the lungs). Another PHEW (or so I thought).
- Blood tests, thyroid function, B12 and folate were in the normal range.
- D-dimer and troponin blood tests were normal which showed ‘no evidence of recent blood clots’.
- Although ferritin was in the normal range (26 mcg/L), it was at the very lowest end, therefore he advised that I start taking iron supplementation, which would help with the palpitations too.
- My ECG was normal.
“The concerning news”
- My BNP marker blood test was elevated— this showed a strain on the heart and they weren’t sure why. “We need to test for heart damage asap so an echocardiogram is needed” (my jaw literally dropped).
- The result of my lung gas transfer test was 53%, which is the same level as a lung disease patient yet there was no evidence of lung disease! Normal levels are 80% upwards. What this meant was that my lungs weren’t exchanging oxygen from the lungs into the blood properly. It was unexplainable, therefore a VQ scan (ventilation perfusion scan) was needed to investigate further.
What followed was six days of frantic googling and heightened PTSD and anxiety. I knew that something was deeply wrong and realising that this could be a possibility was a lot to process.
Thursday 18th February 2021: more tests + an urgent call from Dr Man with the test results
First, I had an echocardiogram, to investigate why there was a strain on my heart. It was the same as a pregnancy ultrasound, only you see your heart pumping on the screen and what a sight it was; it was quite surreal.
The consultant saw something which she found concerning and brought in her supervisor to get a second opinion. It was torturous not knowing what they were concerned about and they weren’t allowed to tell me anything. All I knew from reading their body language, was that something wasn’t right.
She confirmed that I didn’t have a heart defect from birth and that Dr Man would discuss the results with me.
The Ventilation-Perfusion Scan (VQ)
Next, I had a VQ scan to investigate why my gas transfer result was so low. It’s seen as the ‘gold standard’ of lung scans. It involves two scans: one measures how well air is able to flow through your lungs and the other measures where blood flows in your lungs.
I was injected with radioactive dye, an oxygen mask was placed on and I was instructed to inhale the radioactive gas (luckily no reaction to the dye like last time so I was very pleased!).
I lay there for about forty five minutes, praying and meditating, whilst the machine moved around me.
I closed my eyes and entered into a beautiful visualisation meditation — I was on the beach somewhere hot, with my friends and family, celebrating my return to full health. It felt so real. And this incredible piece of technology was helping me to get there. I was at one with it.
I was grateful for it all.
The shocking diagnosis: “there’s something in your lungs and we need to get it out”
Two hours after leaving the hospital, Dr Man called me but I missed it. He left a message that he needed to speak with me about my results urgently.
I felt another surge of anxiety racing through my body.
All I could do in that hour was breathe, pray and trust that I was going to get through whatever it was coming my way.
He called me and told me the following:
The echocardiogram showed a mild pericardial effusion (a build up of fluid around the heart), which was causing the strain.
- His thinks that the fluid was significantly larger after Covid, hence why I couldn’t walk or talk and that it’s reducing naturally over time.
- I needed an MRI of my heart to investigate it further.
The urgent matter — the VQ scan showed an obstruction at the top of my right lung, i.e, it wasn’t getting as much blood supply which explains my symptoms!
- This explains why my gas transfer result is so low.
- The problem was that they didn’t know what the obstruction actually was. The most likely theory was mini blood clots, however they weren’t sure.
- Dr Man had discussed this with two other specialists (a haematologist and a blot clotting specialist) - all three agreed that the best treatment for me was to start blood thinning medication as a matter of urgency, called Apixaban.
- If they are blood clots, it’s life threatening.
- Though, blood thinning medication came with it’s own complications — side effects ranging from mild bruising to major internal bleeding in the organs.
- He stressed that all three consultants felt that the benefits of the medication outweighed the risks, particularly as blood clots were so dangerous and I had experienced symptoms for so long.
- Some positive news is that his other young and fit patients who also have this same issue are getting better from the blood thinning medication.
- Dr Man mentioned that I no longer had Covid antibodies — I tested positive for antibodies on the 27th August 2020, which means they must have dropped off between the 5th-11th month.
- I tested positive for Epstein Barr antibodies (the virus that causes glandular fever). He mentioned that out of 100 of his patients, half of them showed positive Epstein Barr antibodies, which supported the research of a growing link between Covid and Epstein Barr. My test for Epstein Barr IgM was negative which shows that I didn’t have the virus in the past few months.
- My CO2 level was low (though not abnormally low), which suggested mild hyperventilation.
- My 24/7 ECH test was ‘mainly normal’ but showed tachycardia upon standing / movement.
- All scans showed no evidence of pneumonia / residue.
I was so relieved and unbelievably grateful to him. I finally felt validated. After ALL this time of battling to be believed by my previous respiratory specialist, I knew that something was deeply wrong with my lungs and finally, Dr Man had dug extremely deep to get to the bottom of it.
Equally, I felt devastated.
I follow an Ayurvedic diet and lifestyle (Indian naturopathy)— I don’t even touch paracetamol so taking such a risk and putting highly dangerous medication into my body left me in a tailspin.
I emailed him with a bunch of questions; sharing how uneasy I felt about taking the blood thinning medication, given the severe side effects of internal bleeding.
He emailed me back at midnight and answered all of my questions, reassuring me and sharing his and his colleagues thought process.
What a guy I thought. He’s not only the head of two respiratory hospitals and the Covid recovery clinic but he’s taken the time to send me a long response.
The medication was couriered to me and I started them on the 22nd February.
Why my diagnosis is so baffling
My medical team are baffled by the results because they “medically don’t add up” — they’re termed “unexplainable”.
Reason 1: my CT scans don’t match my gas transfer level
- My lung gas transfer level is the same level as a lung disease patient yet my CT scans are clear and I don’t have lung disease.
- Normally, with this gas transfer level, the CT scans would show ‘some abnormality’.
- Dr Man confirmed that he’s seeing a reduction in gas transfer for many of his Long Covid patients, particularly noticeable in young, fit patients like myself who’s gas transfer level would have been excellent pre-Covid. Research also supports this.
Reason 2: specialist CT scan showed no blood clots
- The dual-energy pulmonary arteries angiogram is a specialist scan (only at The Royal Brompton), to detect mini blood clots, yet this was clear, which contradicts the findings of the lung obstruction in the VQ scan. Dr Man even asked an international expert radiologist for a second opinion and she also confirmed that it was clear.
- My blood tests show no signs of blood clotting and my legs show no signs of swelling (typical indications of blood clots).
- Based on the three experiences of the consultants who have been treating Covid / Long Covid patients, they think it’s highly likely to be mini clots and not anything else, though the findings have puzzled them!
Reason 3: I’ve been living with post-ICU level of damage
- An obstruction in the lungs and a pericardial effusion like mine is commonly seen in post-ICU Covid patients yet I wasn’t hospitalised and I’ve been living with this for one whole year.
- How could my body have functioned with this level of damage caused to it!?
- What is it about the damage from Covid that makes it so difficult to detect and why does it contradict normal methods of modern day medicine?
The mystery of Long Covid continues. Meanwhile, I’m this big research case!
I’ve gone from being totally shunned by my previous medical team to now, being treated by the world’s best, with an entire team of consultants working together to get me better!
- My second VQ scan is booked for the 26th April to check if the blood thinners have affected the obstruction in my lungs.
- A cardiac MRI to examine the severity and cause of the fluid around my heart (pericardial effusion).
- An appointment with a cardiologist to investigate the pericardial effusion + test for POTS.
- An appointment with a blood clotting specialist.
Okay, so WHY has it taken this long to find a diagnosis?
In layman’s terms, there are various levels of scans and tests, which are used to detect abnormalities. If your basic scans and tests are fine, you won’t be given the ‘next level up’ — makes sense pre-Covid, most of the time I guess.
Now, a lot of the time, post Covid damage doesn’t show up on even the first, second of third set of scans.
- First level: my chest X-ray and ECG = clear
- Second level: my CT scan = clear
- Third level: my specialist CT scan = clear
Now you understand why it’s so difficult for long haulers to get treated.
It took the highly specialised VQ scan to diagnose my lungs and a specialist blood test (the BNP marker), to detect that there was a problem with my heart.
It’s worth mentioning here, that if the above three scans return as normal, most specialists wouldn’t offer a ‘VQ scan’, especially on the NHS, as it’s very costly. Therefore the final diagnosis would likely be “there is an issue with the gas transfer level due to Long Covid and physiotherapy is needed”.
It was due to Dr Man’s adamant and investigative nature and that I’m part of his patient research clinic, that he referred me for a VQ scan. That, plus given my age and lifestyle, he knew that my gas transfer level should have been excellent.
The trouble for specialists like him and others is that all of these ‘fancy scans’ can’t be given to everyone who complains of breathlessness, as there just isn’t the resources. That’s the devastating reality. And it shouldn’t be because Covid has flipped everything that we know on it’s head.
Even when I was rushed to A&E last year due to heart pain and shortness of breath, they told me that “I had nothing medically wrong with me". My chest x-ray, ECG and blood tests all returned with no abnormalities and they advised the old chestnut, “you may have anxiety from Covid”, again.
The same thing happened with my previous respiratory consultant for five months and due to this strict ‘medical process’, they instead gaslighted me, genuinely believing that ‘I had no medical issues’, (see my previous blog post for the full story).
It meant that I couldn’t get referred for any more tests or scans because everything came back normal!
THIS is actually the main reason why my mental health deteriorated so badly in December, which worsened my physical symptoms.
Shockingly, this is what I experienced at the best general hospital in the UK so you can bet that an incomprehensible amount of people are equally being misdiagnosed. Therefore, I’m in the process of writing to many senior officials in the NHS to inform them of my experience, because quite frankly, it’s diabolical.
Dr Man was ‘ahead of the curve’ compared to other hospitals treating Covid patients. During the first wave, the worst Covid patients were treated at The Royal Brompton hospital and he was able to assess their recovery and find patterns between patients.
He then took on 100 of the worst respiratory Long Covid (including me). Interestingly, the majority of us are still from the first wave (March/April 2020).
He told me that if he assessed a random cluster of 100 Long Covid patients, he would surely find mini blood clots in many of them. His worry is that many long haulers aren’t getting the scans that they need because their basic — moderate level tests come back as normal.
Pretty unbelievable eh!?
All I can do is keep sharing what I’m experiencing in the hope that it sheds some light for other long haulers and perhaps even the doctors treating them.
Full list of my tests and scans
*Since May 2020. Abnormal tests highlighted in bold —tested at The Royal Brompton in 2021*
Lung tests (in chronological order)
- 3 Chest X-ray’s = clear
- Respiratory physiotherapist breathing assessment = diagnosed with ‘abnormal breathing dysfunction’
- CT scan = clear
- Dual-energy pulmonary angiogram (specialist CT scan) = clear
- Lung function spirometry test = clear
- Lung function CO2 level = low but not abnormal
- Lung function lung volume = normal
- Lung function gas transfer (also known as lung diffusion) = *abnormal* reading of 52 (same as moderate COPD patient)
- VQ scan (Ventilation Perfusion scan) = *abnormal* (showed thin obstruction in right lung)
Heart tests (in chronological order)
- ECG x4= all clear
- 24/7 ECG = overall normal but showed tachycardia upon standing / movement
- Echocardiogram = *abnormal* (showed a mild pericardial effusion)
- POTS test — scheduled for Monday 22nd March
- Cardiac MRI — awaiting scan
5 sets of blood tests
- Sars Cov Antibody test 1 (blood test taken in May by GP to test in lab) = negative
- Sars Cov Antibody test 2 — different brand (blood test taken in August by previous respiratory specialist to test in lab) = positive
- Sars Cov Antibody test 3 (blood test taken in February by Dr Man to test in lab) = negative
- BNP Marker (tests for a strain on the heart)= *abnormal* (mildly elevated)
- Low ferritin level (26) = shows low iron — recommended to start iron supplements
- Other baseline bloods, folate, thyroid, B12, vitamin D = all normal range
- Epstein Barr virus antibodies IgG (causes glandular fever) = positive
- Epstein Barr virus IgM (measures if I had it within the last few months) = negative
- Borellia antibodies (Lyme disease) = negative
- Sodium and potassium = normal range but much higher than my average (I’ve always had low sodium and potassium due to low blood pressure / hypotension)