Hereditary Hemochromatosis​ Mutation 2

Hi I am 39 yrs old and first came down sick March 14 2015. I was admitted in hospital for 15 long days ATLs and STLs I think that's correct , were 1237 and 1200 and iron 995 all labs were awfully high. After being released I lost 30 lbs and by July had gallbaldder removed and was told I had stage 2 grade 2 fibrosis. And later that December was diagnosed with Hereditary Hemochromatosis Mutation 2. I was told my several ER doctors I should be on the transplant list. As of April 2016 I was suppose to follow up with the center of liver disease. Never went. Was very scared. I was told it was urgent and I needed a liver cancer screen done. In the mean time no doctor started phlebotomy treatments and my iron has been high and Oct 2016 iron was 300. Still no help or treatments. Since I've been sick as of December 23 2016. My symptoms have gotten worse. Here ya go. Sugar is out of wack. Low readings like 13 and 21 and anywhere to being 386, extreme weakness. Extremely tired , sore throat feeling as I coming down with a flu or cold. Swollen lymph nodes in throat and behind neck. Liver pain , kidney pain , fluid retention, night sweats, chills, nausea, vomiting, weight loss, bone pain, shortness of breath, heart flutters, fever no higher than a 100 and now a rash not really above skin. Anyone that tell what there thoughts are? Scared and sick and feeling worse. Could you this be advanced fibrosis, liver cancer?

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4 Replies

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  • Please some give me some ideas

  • If you were told you needed to follow up with Liver Center then you really should have gone as they would have helped put things into perspective for you, monitored you appropriately and put the treatments in place which should have stopped you getting to where you are now, totally baffled and terrified. You say no doctor has put the theraputic phlebotomy in place but in reality they probably would have had you gone to the liver center.

    I am no expert on haemochromatosis so can't offer an opinion on what is going on with your condition just now, things are obviously not right so you really do need to get back to doctors and under the care of a liver specialist ........... you really can't bury your head in the sand with this condition as yes it can get pretty bad, pretty quick.

    I wish you all the best, Katie

  • I'm with Katie here. See a doctor as soon as possible and they will institute measures to reduce your ferritin levels and send you for other tests. I assume you are in US so your reluctance may be down to costs. What is certain is that it will not get any better, and could get much worse (and more expensive) if you don't start treatment soon. You will get some useful information from the Haemochromatosis Society website at haemochromatosis.org.uk

    Mike

  • Hi. I also have hereditary hematomacrosis was diagnosed beginning of this year after having routine blood test done at my gp. I had 3 lots of blood test's done at my gp after each one it showed my ferratin levels had increased,so I was sent to the hematologist who gave me my diagnosis. My son had to be tested but thankfully he's in the clear. It was explained to me that treated I'm fine, however not treated it can be fatel. As the excess blood needs to go somewhere and if it collects around the liver pancreas or heart it's fatel. My treatment is regular blood taken each week. When first started my ferratin levels were 1350 with having blood taken its slowly going down. They want my level to be 50 so got a long way to go yet. Last reading this week was 660.

    Takecare and hope u get sorted soon.

    Debbs.

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