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Liver biopsy results and likelihood of cancer

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Jessica1981
Jessica1981

Hi This is my first time posting and only recently discovered I have HH. My liver biopsy came back stating I had moderate liver deposition of iron and called it a grade 3 out of 4.  There was no cirrhosis or malignancy seen. Now I  am waiting for a liver ultrasound because my doctor said this increases my chance of certain liver cancers and will begin receiving phlebotomy treatments in a couple days.  My questions are: have many of you developed cancer from HH?  Are any of you guys female and of childbearing age ( I am a 36 yo female)?  How did HH affect you ability to work full time?  I’ve been off on medical leave and was supposed to return today but then got this information.  I’m still tired all the time but my hematologist says it’s not because of HH and that everyone is tired 🙄. Any input would be appreciated. 

Thanks

0 likes, 9 replies

9 Replies

  • zach76568
    zach76568 Jessica1981

    Posted

    Relax and take a breath.  I went thru same thing. I am 41 now and liver biopsy when I was 21.  Good news is that no cirrosis!!! Your phlebotomys will eventually get you feeling better!  Don’t worry - because I drove myself crazy years ago thinking the worst thoughts.  Let them get all the information first.  

    • Jessica1981
      Jessica1981 zach76568

      Posted

      Thanks. I know I need to relax. I alays jump to worst case scenarios
  • selina58849
    selina58849 Jessica1981

    Posted

    Hi Jessica, I have HH and am tired most of the time too. Fatigue is one of the main symptoms so not sure why your hematologist would say it wasn't. I recently found out too and am a 41yr old female.

    • Jessica1981
      Jessica1981 selina58849

      Posted

      Do you work? And if so did you need your work to allow for any sort restrictions?  I’m currently employed 40 hours a week 8-5 Monday through Friday and have 2 children (3 and 5) that I’m alone with from 5 on ( their dad works second shift). I don’t feel capable of working 8 hours a day but need the job and need it full time for health insurance. I’m at a loss of what to do
    • selina58849
      selina58849 Jessica1981

      Posted

      Hi Jessica, no I don't work at present. My husband is fly in, fly out so I'm a full time mum to 2 girls. I have had full time jobs in the past, but not in the last two years. I've had other disabling injuries as well which I've read may possibly be related to HH. Plantar fasciitis and shoulder bursitis. I keep reading that everyone is different with HH symptoms which is why I take other peoples opinions with a grain of salt sometimes. Even doctors. I am going to have my first blood donation soon and hopefully I will feel a whole lot better. I know it does get us down and find it hard to cope with just daily chores sometimes. I am exercising regularly since finding out and eating healthily as I want to be round for my kids as long as I can and refuse to let this condition beat me!

  • Chris8968
    Chris8968 Jessica1981

    Posted

    Once your ferritin levels have been brought back to normal and you are on a maintenance schedule, any symptoms related to HH should go away unless they resulted in permanent damage. If you are tired all the time I would start looking for the cause outside of HH.
    • Jessica1981
      Jessica1981 Chris8968

      Posted

      Thanks for your input but I don't really like the part about having to look other causes.  The reason I say this is because of my story of how I found out that I had HH.  In summer of 2015 I was hospitalized with viral meningitis.  Since then I have had low total white blood cell count, low lymphocytes, and low neutrophils along with chronic fatigue.  Because of the low counts I was referred to a hematologist and basically ruled out any medical cause of the low counts other than possibly medication induced.  During this battery of testing the ONLY abnormality he found was that I had no iron in my bone marrow and basically told me that I will become anemic one day and taking iron wouldn't hurt.  SO, I started taking an iron supplement on top of my multivitamin.   6 months later he ran iron studies and they were a bit high.  He discharged me from his care and told me to have my family doc recheck the iron studies in 6 months.  I stopped the iron supplement however I continued to take a multivitamin.  My family doc rechecked about 3-4 months later and my levels were even worse.   My iron saturation was at 100% that day.  After looking into iron overload and learning more about HH I recalled that there was 1 or 2 things on the ancestory/gene thing I had done years ago that showed I had a "slightly increased risk of developing" and sure enough one was HH.  I have two C282Y variants.  I immediately notified my family doctor who spoke with the hematologist but it took over a month to get an appointment with him.  So despite all the new scary things I now have to deal with the one silver lining was that I thought at least now I know why I've felt like crap for so long and my boyfriend can see that its not just in my head or that I need to "suck it up."  Anyways, thats why I didn't like your response......but thank you for your input and giving me the opportunity to tell my "story" too as I don't have any supports in my life that know first hand what I'm dealing with.

    • stevetrov
      stevetrov Jessica1981

      Posted

      I was also told that once I was deironed I my fatigue would improve. Unfortunately for me that was not the case. And it seems to be that way for a significant number of people on these forums. 

      For some people things do improve and they can have a normal life. For others like myself it can be crippling. 

      As for cancer, I was also told that I have an increased risk of cancer as a result and although this initially concerned me, as the doctors are testing me regularly they have a very good chance of finding anything bad early. So the increased risk isn't actually that significant. 

      The most effective treatment I have found for coping with fatigue is pacing. This is the exact opposite of "sucking it up". The idea with pacing is that you work out what level of activity your body can cope with and allow times of rest / relaxation between activities to recover. If you "just suck it up" then you will over do it, crash and it will take a longer to recover or make you worse over all. For many people pacing can give a significant improvement to the amount of activities you can do but its important to listen to what your body is telling you. 

      Hope you your health improves soon. 

      Steve

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