Really was dreading today as most of you know
I'm dreading to think of my treatment with my hospital
At first on arrival I was told I might not have haemochromatosis
After a heated discussion the Dr then informs me that I've actually got the both gene type & is booking me in to start my venesection
After arranging this he asks me if I have anymore illnesses
To which when going through the list of diagnoses
I explained I had Crohn's disease
To my shock he replied I hadn't got that illness
I've had it for the last 26 years & have had so many flare ups in the past
Which I explained to him all of this
He sat there stumped
I sat there gob smscked with my mind going round in circles
It was bad enough going there not knowing what to expect
But this has compleltly cabbaged my head
To how a top specialist could get something so wrong with not just one but two of my illnesses
It's bad enough with all the stress they cause but to hear I haven't got either when I actually have is just beyond belief
Nothing surprises me, now, I'm sad to say. I dread having anything wrong as doctors just don't seem to know what they're doing, lately. I had a similar experience when my doctors' surgery received my gene results. I saw a doctor who told me I was absolutely fine with one gene mutation which wouldn't cause any problems because HH is recessive. He asked me if I was a "stressed" person and suggested that stress was causing my symptoms. Two days later, I am called into the doctors to "discuss my recent test results". A different doctor sits me down and gives me the news that I have two mutated genes and HH and that I will be going to see a consultant. The previous doctor hadn't read the results properly.
This is just one small example of my despair where doctors are concerned. I expect the worst, now, where I used to hold them in such high esteem.
Sending you a big hug - you must be feeling so fed up.
I think that I would ask for a second opinion.
That's terrible :-((
They should read your notes properly
I know they are limited to the time they can see you
But to be told one minute you haven't got the illness & feeling so relieved
But then to be told you have & got both genes
It knocks you back a lot
I came out feeling a lot more stressed , but mainly annoyed that they can mess patients around like this ESP when we're already going through so much
Thank you & sending one to you too :-)
I would TBH if it was only a couple of results I'd had
But I've had quite a few & last one was worse
They said it was abnormal
Whatever is meant by that
I just wanted to get out TBH
That's why you have to ask for copies of your results, so you can read them yourself. It is not hard to work out.
My gp did the same when my son was tested. I was told he was just a carrier with one of my genes. I said that can't be right as his ferritin level was 772 and he was just 22. I asked for a copy, read it, and it actually said he was compound heterozygous C282Y/H63D
As she had taken 9 years to diagnose me (my hips broke up which revealed the diagnosis), I realised we cannot rely on them, and we have to educate ourselves and advocate for ourselves. And she was deemed a very very good dr. This was pre google, otherwise I would have been able to find out for myself much earlier.
Yes, because of your previous advice, Sheryl, I always ask for print outs & make sure I am well informed.
Yes, I remember you do. I should leave out the "you" and generalise it and say "we", to be all inclusive.