So following on from my diagnosis of fibromyalgia and hypermobility a few weeks ago, I was sent for blood test (which I'm not allowed access to results?!) as far as I know, I need to have an MRI which I am waiting on an appointment for. I just received a letter with an appointment for an echocardiogram. I rang the hospital to see if this was made off the back of my bloods but again, no one can tell me anything.
You guys are always helpful so my question is, is this a routine test?
Do you think something bad shown up in my bloods to warrant the echo?
Would this be in addition to an MRI?
I'd love to hear your experience if this has happened to you.
I'm just so fed up of hospitals and doctors not being able to tell me anything!
Thanks
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Bean94
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I have to say that I am very confused! Who has told you that you are not allowed to know the results of your blood tests?
Not only are you allowed to know the results of your blood tests, it is now possible to see our own patient records.
You do have to pay and it can take about 3 months, but if you want to see your patient records you can.
I am guessing that you have asked your GP why he wants you to have an MRI scan and an ECG?
If you are not getting these answers from your GP, my personal opinion would be that you need to change your surgery or see a different doctor.
Unfortunately I cannot answer the question about your bloods showing something up - but you can at least be assured that if it was something that needed to be looked at urgently, then you would be fast tracked through the appointment system.
Due to the fact that a minority of people have spoilt it for the majority, hospitals will rarely tell you results there and then in case they get the diagnosis wrong, and then the hospital gets sued.
Make an appointment to see your GP. Take someone with you for moral support (a friend or family member) and start asking some questions.
Thanks for your reply. As it was the hospital that requested the tests not my gp, my gp is not able to help. However the hospital will only discuss results with a gp not the patient directly. (sounds like a silly system to me)
Rhumatology are sending me from an MRI on my spine which I was aware of and they also said they would check my heart during the MRI but have clearly decided against that.
Can't help on most of your post but you can ask for a photocopy of your blood test results from your surgery reception saying , I'm happy to pay the fee for photocopying. They might say, we need to get the gps approval so it will be later on this afternoon before you can collect it. Most surgerys charge these days and the price is approx 50p but could be a bit more.
Have you tried asking your Gp about your results? Sometimes it's a case of asking the right person. Someone who is taking your blood won't be able to give you the results of any previous blood tests because they won't have the knowledge of interpreting blood test results. It can be frustrating navigating the health service.
Not sure why they won't let you have results. I just call into the doctors and ask the receptionist and she prints off a copy for me. The hospital should send results to doctor or if not send a letter to the doctor and copy you in on the letter. Never personally had a problem requesting copies of anything. Never had to pay for it either. The only time I have paid for anything was for a private referral. If there is a problem at the hospital call PALS Patient Advisory Liason Service (or something like that - foggy brain tonight) all hospitals have one and request they sort it for you.
There is no reason a gp can not tell you your blood results. In fact they should actively be following u up after tests.
As far as why you are having the MRI and ECG, if the rheumatologist has referred you for those he should be able to tell you why. Once you have had these be sure to ring the rheumatologist and book a follow up appointment so he can talk you through the results. But FYI a good GP should be able to give u a rough idea of what's going on. And if the hospital will only speak to a GP I would ask them to send a letter to your GP with the results and then see your GP and ask what the letter says.
I have always received tests results from gp. And my neurologist showed me my MRI scans as he was talking me through them
I can understand the hospital not giving you the results and going through your doctor first. He has your medical history in front of him and can look at the results in relation to that.
Your GP could ring the other various departments for information if he is at all concerned, or if you ask him specifically to do so.
I have had the same with a scan my rheumatologist ordered. I enquired at the radiology department who told me it had gone to my rheumatologist. I rang them and was told they could not give me an answer until the rheumatologist had looked at it. I asked when would I know the result and was told it would be at my next appointment.
The fact that my next appointment is not until September seems to make no difference. She just said if it was very bad news, my appointment would be brought forward.
I haven't heard so I am guessing it is okay, but it is very frustrating not to know for certain.
How strange? I would ring you surgery and ask for the results as you are entitled to them. If I were in your shoes I would tell the hospital that I am not having any echocardiogram until they tell you why you need it? If they refuse then I would contact PALS. (I have pasted a link below:
And explain everything to them and say you want to know why? Please remember, they are supposed to work for us (we pay for the NHS) and not dictate to us.
I want to sincerely wish you all the best of luck and please take care of yourself my friend.
I've also got hypermobility, I too have had a blood test, they told me it takes about 4 months for the results so hold on. I've also had all those other tests. Genetics will be in touch when they get your results. Didn't they tell you what they were looking for? They're looking at your genes.
Hope this helps 🙂 I'm in the same boat as you. It's a battle but we will get there in the end. I hope.
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