Rare Diagnosis? Anyone With The Same Kind?

In short, it sounds highly unlikely that you'll need a liver biopsy. You're young..and it sounds like your organs are fine. I also hear these days, that it's not common to do biopsies on the liver unless absolutely necessary..mri scans etc are enough. So, don't worry too much about that at the moment. 1300 sounds like your ferritin level..the amount of iron being stored in your body, should be between 50 and about 200.

Don't be reading up too much on it, as it's always scary stuff reading about it...when the reality is usually no where near as bad. You're young...you've been diagnosed...no organ damage..so no need for any biopsy. The joint pains and fatigue are very typical. I have pains in my right hand. Once your treatment starts these symptoms often improve, especially the fatigue. Treatment is to take blood from you regularly to get the iron level down. Venesection it's called....don't let that worry you...it's really OK...especially when it starts making you feel better. You're gonna be OK. Please keep in touch...we are all here to help. Don't panic too much about a strict diet. Eat less red meat...no cornflakes and cereal with added iron. Don't have vitamin c when eating..makes you absorb too much iron. Drink lots of milk when you eat cos calcium stops your body absorbing iron! Keep in touch and ask any questions...take care. Mike.

I was diagnosed when I was 21. My ferritin was only at 600+ at the time and all they did was do genetic testing on my blood, no liver biopsy was required. I didn't even have an MRI or anything like you. My blood specialist said that due to my age and the (relatively) low ferritin count there was no need for a liver biopsy. If your doctor suggests you having one, get a second opinion. Ask if in the meantime you can have plebotomies (your blood drawn to lower the ferritin amount) instead.

My doctor told me that the potential complications from a liver biopsy weren't worth it for me.

You are in the right place you will find a friend on here who will understand and I so get it how this thing can make you feel alone, and with you going through probably the toughest years at school you must be feeling a little as if your world is upside down. Good news is with a few changes this shouldn't impact massively or make you give up the fun part of being your age! Stick with it and keep talking you are amongst good friends. Who have the bonus of understanding what your going through. Keep smiling darling we got your back hugs Mary

If your liver has been found to be fine, then I don't see why a liver biopsy is necessary.  That is how gastroentereologists used to prove that we had HH, before genetic testing was available.  So resist it if suggested.  Agree to a scan instead if they want to know what is going on with your liver.  Just reread that you had an MRI of your liver, so there should be no suggestion of a biopsy.  An MRI of the heart and liver is the ultimate, so you are lucky to have had it.

I know what you mean about having someone who knows what you are going through.  I am the only one out of 5 children who has it and my siblings have no idea what I am going through.  I started a support group and found everyone else was so different in their severity and range of problems.

Join your country's HH association and keep up to date with them, you could possibly help spread their brochures, etc.  There are lot of researchers in the world, check out Prof Pierre Brissot's (Rennes, France) research studies.  A big problem is trying to get funding for research of HH.  Somewhere in the world, a group are working on replicating hepcidin (which we are low on, or does not work for us) as a treatment.  So there is hope.

In the meantime, concentrate on your studies which are very important for your future.  Ask for copies of all your test results, so that you have a record, maybe put them on a spreadsheet so you can follow what is happening.  Record your phlebotomies, and also how you feel as your ferritin levels lower.  When you are deironed, you will find your optimal level where you feel best at.

Heaps of luck