Ehlers-Danlos Support UK
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Worried About X-Ray results not being passed on!

So on 24/02/16 I saw a Rheumatologist who said I had Ehlers Danlos Syndrome type 3. She also said I showed signs of type 4 (lobe-less ears, spacing between eyes) - to help diagnosis she sent me for a chest X-ray - also on 24/02/16.

She said she would send a letter to my GP to get them to refer me for Genetic Testing and also to get them to refer me to EDS specialist. And thus - I didn't need another appointment.

Fast forward to 30/03/16, over a month later and the X-Ray has only just gone on the system (and the referrals have still not gone to my GP). 

I've seen what the results say before anyone has spoken to me about them...

And what worries me is it says "there is an atypical configuration of the heart shadow - unfortunately there are no other X-rays to compare it with". 

Now the X-Ray went onto the system on 30/03/16, will they ring and tell me that somethings was abnormal and schedule me an appointment to see someone/run more tests, or because it's not what they are looking for - will they just ignore it? Will the consultant ignore it because it's been over a month since I saw her so she probably forgot about it? Think ill ever get those referrals through? How long before I hear anything? (As I side its been a month since he X-Ray and 2 days since the consultant radiologist looked at it. 

I just worried somethings up with my heart and they're just going to ignore it :(

I live in the UK/use the NHS.

3 Replies


Your GP can refer you for the necessary heart scans so as they've received the report it'll be worth getting onto them. You could also try the consultants secretary but if you've been referred back to the care of your GP then go that route first.

Things take so long but of course they don't see the worry a person goes through. 

I hope you get the tests soon but you may just need to chase them.

Lou. Xx


Unfortunately I think this is fairly typical.  Everything takes an age to get on to records and then it seems down to us to make sure the right records get passed on to the right people!  In the days of computers I wonder why it's all so difficult.  If I were you I'd contact the rheumatologist (or their secretary) and tell them of your concerns and then make sure your GP has got them.  You can ask the secretary at your GP's.  I asked to transfer hospitals recently and discovered the secretary at the GP's was very helpful (although, three weeks later, still waiting to hear if I'm successfully transferred, but am going to phone the 'new' hospital next week if I've not heard anything to make sure they've got me on their list now).  But don't be afraid to contact anyone to make sure things are flowing as they should.  Believe it or not, although it might not seem like it, they are actually there to serve us, and not the other way round!


First of all I know it is worrying when we see things like 'atypical' but if it was something serious they would have contacted you by now. Anatomy is one of those things where we think of Gray's Anatomy (the book, not the TV show) and assume that everyone looks the same inside, but unfortunately foetuses don't have that book to hand when the human body develops. This could just be you being unique. 

As for the consultant forgetting about you, you are right, they will have, because they have 100s of patients every week, 1000s over the year, and that is why they write up notes and have secretaries! So yes, contact the secretaries. 

Some GP practices have a secretary dedicated to handling referrals, so defiantly ring up the practice and ask to speak to the person that handles referrals. If there is a problem and nothing gets done, ask to speak to the practice manager. 

There is no point in me telling you not to worry, because it is worrying, but sometimes being proactive and finding a logical path to follow can help keep our mind of the worry and put energy into sorting things out. 

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