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Is a low dose CT any use?
Despite continually worsening S.O.B, low O2 sats and severe restrictive pattern on spirometry, a Pulmonologist I saw this week refused further investigations and suggested I have dis functional breathing. Again, all because they couldn’t see anything other than a tiny bronchiectasis on an HRCT last year. She recommended physiotherapy – I had been going to physiotherapy but it was doing nothing and I stopped because I pretty much don’t leave the house I’m so ill. Nothing I said – be it that I can’t walk far, that my chest feels like it’s got ropes round it, that I can’t sleep, I’m in pain, even that my sats have dropped as low as 79 – would get her to change her mind. Oh and that when I move or stand up my pulse jumps to about 125-140bmp (she even saw that in surgery but said it’s anxiety). I’m not questioning her professionalism or skills and I know she obviously medically believes what she’s telling me, but I know I feel about 10% as well as I did two years ago.
I KNOW something’s significantly wrong but I’m just hitting brick walls. It’s so frustrating medics are ‘gods’ and have the final word. I get that in their eyes I’m ‘too young’ to have an ild, but I know my body. I’m not blaming it on anyone – I used to smoke (started in my teens like a fool and gave up two years ago) and I’ve lived next to a main road and set of traffic lights for 20 years. My flat was always dusty as I stupidly never looked after it properly.Now the HRCT – high resolution – last year was on the NHS. I’m in the UK where this scan has to be ordered by a senior doctor like the one I saw, so no chance there. It is possible to pay privately for a low dose CT scan – seemingly with no referral needed, according to scan.com’s website. I’m wondering whether to go down that avenue even though they’re not much more powerful or detailed than a standard x-ray. Does anyone on here know the likelihood of low dose CT spotting anything that was missed or has worsened? Or was anyone’s IPF/PF noticed on low dose CT? Advice would be gratefully received. Cheers, Gavin.
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6 Replies
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Yes Gavin, I believe it is. I have IPF which never really bothered me greatly and I was fit and active at 74 years of age. Whilst on holiday in 2022, I contacted Covid 19 which ravaged my lungs and disabiletated me to the degree that I was hospitalised for a month. After a slow recovery of about 6 months my Consultant organised a CT Scan for me. The results showed that my fibrosis had more than doubled in size and a further breathing test revealed that my lung capacity was down to 62%. The result was that I then prescribed Ofev drug, which will not cure my IPF but will slow down its progression. I am so privileged and all due to the CT Scan.
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El Scann sirve para que el Doctor (Broncopulmonar) complemente las pruebas de espirometrías. para mí también ya que yo llevo mis propios análisis porque yo soy el siente el avance de esta enfermedad. Hay que desafiar a los médicos con preguntas e indicarle los síntomas preparando la visita
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Two regular CT scans clearly showed the progression of fibrosis. With an HRCT, I was finally diagnosed with IPF.
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So, I had a low dose CT privately.
It showed a 6mm nodule in my right lung middle lobe. That’s the area where I could originally feel pain and discomfort (which I now have all over chest, along with breathlessness and low sats, dizziness and high pulse etc). The nodule wasn’t present on High Res CT in September. I need to somehow get the NHS to compare my new CT against the private one. Getting nowhere. It’s quite frankly frightening how the NHS is so difficult to contact or to take me seriously when I’m so ill!
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Hi Gavin:
So sorry to hear of the struggles you’re having with getting the NHS to review your previous scans and address your symptoms. Do you have a primary care physician? He/she should be able to refer you to a specialist to compare the scans. In Canada, we need a referral to even get a CT scan, there is no option to have it done privately; did someone refer you for the CT scan you had? If you’re truly having low oxygen levels (not “just” short of breath/breathlessness), you should go to the ER at NHS and they shouldn’t discharge you because hypoxia can cause damage to other organs. Bring an oximeter with you and show them the low levels, or take pictures of it and have them remeasure it in the ER. Sounds like a super frustrating experience for you, but remember we’re our best advocates (as exhausting as it is sometimes).
Take care,
Charlene.-
Thank you for your comments Charlene and hope you’re as well as you can be. Sadly, every time I call an ambulance or visit a doctor my sats remain above 94. They occasionally dip for a few minutes but I’ve had a doctor say even at 90 it’s not a concern if they go up. I think I somehow compensate and over breathe in those situations. Maybe cos I get a little anxious. But when I’m back at home they drop a lot. I just went for a sluggish walk to the local grocery store and noted they were at 88 when I got back. I was very out of breath and pulse was at 158. These things just aren’t normal for me. I slept pretty much all of Friday, Saturday and Today. Which again isn’t normal for me. I’ve made a GP appointment to try and get my private CT onto NHS systems for comparison, but the pulmonary consultants get very angry if I keep saying they’re missing something. It’s like their word is final. All I know is that the nodule spotted this week in the private scan wasn’t on the NHS one in September. The private place I went said not to worry about the nodule and to get another scan in 6 months. But when I mentioned it wasn’t there in September they seemed concerned and said I need to get the original radiologist dept to compare them. And no, the private scan didn’t have an NHS referral – I used a service online where you pay a private doctor £350 and they write a referral. As daft as it sounds, the private scan was at an NHS hospital, but as a private patient they don’t have access to your NHS records and vice versa. The only referral my GP could do last time I saw them was to refer me to another NHS trust, likely miles from where I live and there’ll be a long wait. Other than that, all I can do is wait (knowing for certain something isn’t right) until my SP02 drops to 88 or below and ring an ambulance. It drops low every day and if I cough a lot and walk about it goes above 94. But when I relax again it drops after a few minutes. Sadly you can’t do all this in a 10 min doctor’s appointment. They did a sleep study with a home sats monitor and all was fine but this was months ago before it got as bad as it is now. I still can’t believe they were never concerned about the severe restrictive pattern on spirometry tests last August. I think a lot of the dismissive ness is because I’m under 50. Anyway, thanks for your kind words and I hope things are as ok as they can be for you.
take care,gavin.
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