Good evening - I was diagnosed with Hughes Disease after the birth of my daughter in 1995. It hasn’t, to my knowledge caused much of a problem over the years. However last June I was diagnosed with hypothyroidism. And I have just had a panic with suspected malignancy in my lung, that a CT scan has confirmed was not a tumour but two areas where my lung has collapsed.
Has anyone else with APS experienced this? Could it be as a result of clots? I only received this news on Christmas Eve and have an appointment to see my GP on 8 th Jan.
Any thoughts and advice would be so gratefully received’
Thank you and I hope the holiday period is going well!
Kate
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Wild-Bird
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Wow, I just came across your post. I also have Hughes and have had so many pulmonary embolisms the past four years. I have had hypothroidism since I was 13 (am 51 now) and it really doesn't bother me. That said, for the past 6-9 months, I have had a bad sharp pain in my upper right lung area (,in my back). I haven't gone to get it checked, and it seems to be getting worse (I have a hard time getting into my car without it taking my breath away). Lately my pulmonologist (who diagnosed asthma several years ago) was shocked that my recent pulmonary function dropped from 68% to 41%. I am wondering with all the chronic clots/asthma/infections, maybe my lung has collapsed? What does yours feel like? I hate to go get this checked as I feel lately I have been to the doctor so many times.
Thank you for your response, Willow! I understand!
I have had a cough for over a year; it’s not too bad, mostly in the morning and it is productive. I was wondering if it was a post- Covid thing …also a couple of episodes of nasty breathlessness when I tried to play tennis (having not picked up a racquet for 12 years!). GP arranged an XRay which showed an area of opacity. He thought it was infection, gave me antibiotics and did a repeat XRay 6 weeks later. There was no change and that led docs to suspect malignancy so I had a CT scan a week ago. That showed the areas of lung collapse - two of them. I have had some dull pain in my chest, but I have had this on and off for years. Just feel I’m dropping to bits with just one thing after another…
I hope you get to the bottom of your pain - it sounds as if it would be worth checking. Good luck!
Sorry this has happened, but very glad it’s not malignant.
I would suggest asking your rheumatologist about the connection between faulty connective tissue ( collagen and or collagen signaling pathways) and pneumothorax incidences.)
He or she might not know- but I can tell you ( as this happens to me) I was diagnosed with Ehlers- Danlos, but it was actually Loeys- Dietz Syndrome Type 5. It’s not terribly uncommon for Ehlers Danlos Syndrome to actually be Loeys Dietz Type 5 if it’s actually sent out for genetic testing by Invitae .
Thank you, KellyInTexas. I haven’t heard of those and will look them up. I dont have a rheumatologist at the moment, but it is probably time I had one again (I was diagnosed at the London Hospital following my daughter’s birth). I was thinking of asking my GP to refer me to St Thomas’s where I understand there is an APS centre.
Hiya, I am sure the medical team will get to the bottom of it, do let us know what they have to say about it, as it can be for a variety of reasons. MaryF
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