Posted , 3 users are following.
Hi all,
i was dIagnosed with HH last year and was sent for an MRI in January. I have been waiting for the results ever since.
I have just received a letter today with an appointment for a 2nd MRI.
Is this normal, I am freaking out as i can't get any information from the doctors
Thanks
0 likes, 3 replies
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tom_70042 adrian43524
Posted
hi Adrian
go with the flow i guess like me they might be checking up on fatty liver maybe
ask the guys after the mri how things were i went private and they told me immediately the results ok it cost me £700 i am in the Uk
but you should not have to wait long for results best to know quickly
not to get a result from january is a disgrace methinks it was inconclusive or there was some movement in the mri so the test was messed up
if u have the cash just get it done they will tell u straight away
gives u peace of mind
stay healthy Hh is not the end of the world once you get into maintenance its no sweat hard getting there but once there celebrate
stay healthy good luck
am sure Sheryl will respond too and give excellent advice
tom
sheryl37154 adrian43524
Posted
I agree with Tom. I am assuming it was an MRI of the liver. This is the special type of MRI which requires no movement of your organs. So your first MRI may have been faulty. They should do it for free if it their fault. It will show how much iron is in your liver. I think the procedure is excessive for a new diagnosis unless your ferritin is in the 1000s (given my experience below). A blood test will show if your liver is damaged, but does not indicate a fatty liver. An ordinary CT scan will show if you have a fatty liver.
So you need to know just what they are looking for. If you do have a very high ferritin level, aggressive venesection will eventually reduce iron in the liver.
If you have cirrhosis of the liver, a blood test would have given an indication for that and you should have been told that they are looking to confirm that.
Re first para, I wanted such an MRI even though I had been de-ironed, i.e. down to 50, but I still felt my heart had a problem. Like Tom I had to pay a lot for it, but for peace of mind, I did. My heart and liver was clear.
You have to educate yourself regarding this metabolic condition and be assertive as you cannot rely on dr's knowledge of this.
You can always contact your country's Haemochomatosis organisation for helpful information and ask them questions too.
Good luck
miller.jones adrian43524
Posted
it could be they did not order all the required imaging tests or it was not a clear image I wouldn't worry if it was something they thought could be bad they would of suggested biopsy as well which some will do as standard if your numbers are very high anyway .
Most times they will using multi imaging types to check different parts of the body because this condition can do damage all over without any signs plus it's good to check them at start of treatment for base line.