Worried about MRI
Posted , 5 users are following.
Hi there,
In Dec 16, my doctor was concerned that i might HH. I was referred to the liver specialist who i eventually saw in July 2018. Unfortunately he couldnt do much as my blood work was out of date. More blood was taken and i had a further appointment in Dec 18. I was told that my liver function was normal and he thought i was just a carrier. Levels had gone down since Dec 16, they were 250. Another sample of blood was taken and he advised he would write to me with results. I have received a letter today for a MRI appointment. Is this normal to have an MRI.
I am quite an anxious person and with all this waiting around i have started having panic attack. Really freaking out that there is now something wrong.
0 likes, 6 replies
deb94549 adrian43524
Posted
yes it's normal. They just want to check the elasticity of your liver to see if any damage has been done. I had mine in Sept. It's not bad, if you need to have them place a towel over your eyes and just relax. They couldn't get any good results from mine since my liver was holding too much iron. I started at 3175 and after 7 months i'm down to 465. Good luck to you.
patrick001 adrian43524
Posted
Hi mate, i am going through the exact same thing, waiting around for our appointments is hard on the head! I am going for my scan next week then have to wait two weeks before i get to see my doctor with the results. My doctor said the scans are just another step to rule out anything else before they diagnose the condition as HH, the information from the scan helps them plan an attack on tackling the HH, your levels arent that high and your liver function is good so that would have to be a good thing plus your levels are still in normal range. My levels are currently 681 and normal liver function although i am 49 so have had a lot of years to build up my iron levels.
adrian43524 patrick001
Posted
Thanks for your message. Just had the MRI. Not as bad as i thought it would be. In and out in 40 minutes. Think the lack of and different information i've been getting from the doctors is stressful
sheryl37154 adrian43524
Posted
Gosh, you are lucky to get an MRI. It is not considered necessary where I live. UK? has come a long way with HH since I first started reading this forum.
BTW, your dr cannot tell if you are heterozygous or otherwise from looking at your liver. My liver was not affected but my homozygous C282Y was very aggressive, resulting in osteo-necrosis and many other issues. A genetic test is necessary.
There is a new realisation regarding evidence of HH. Check your "Blood Count" results which is a very common blood test. Then look for your MCV. If it is 96 and higher then that is now considered a marker for HH. If you TS% is >50, this is also an important marker.
Mine (and my husband's who also has HH H63D/H63D) has always been 100 or so and when I questioned it, "it was nothing".
adrian43524 sheryl37154
Posted
Thanks for message. Got the MRI on the NHS. I'm in Belfast. Genetic test was down in dec 16 and i do have the gene unfortunately. More waiting round now for the results 😐
sheryl37154 adrian43524
Posted
For a long time now, I have been bold enough to ask for a copy of the cd and the printed report - have to go back for it because it takes hours for the report to be done. Then I look at it for myself. My drs don't mind. They know I am intelligent and sensible enough to not get into a tizz about it. I then google anything I don't understand.