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Have HH and now Liver Haemangioma and small Cyst

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Chelle69
Chelle69

Hi Everyone,

Just wanted some advice if anyone can help or has had to deal with the same issue's.

I was diagnosed with HH (Homozygous C282Y) in 2017. My ferritin wasn't very high (299) so only needed a few Vx to get down to 23, have since gone up to 37. my TS at the time was 69%

Last time I was checked was in Nov 2018. I have since had some stomach problems, fatigue and generally feeling unwell with no energy whatsoever. Also first finger has swollen and keeps clicking for some reason! I had a scan at GP's office in April and was told my liver was all fine but had a small gallstone or polyp? I was sent to a specialist at the hospital for a US scan and was then informed a have a 4mm polyp (not gallstone) a tiny Cyst on my liver and a dilated blood vessel called an Haemangioma. I was informed by the specialist that 'these are not uncommon findings on a US scan' and nothing further needs doing at present and I will be seen for a scan again in a year's time. The problem is why wasn't it seen on the first scan in April when I was told my liver looks fine? My other worry is with having HH I wonder if I should be making more of a fuss to be seen as we are more prone to having problems with the liver. The specialist isn't very helpful and I wonder if waiting and leaving things for a year might cause things to get worse and turn into something more sinister with having HH.

Thanks for any advice on this. All will be much appreciated

0 likes, 2 replies

2 Replies

  • sheryl37154
    sheryl37154 Chelle69

    Posted

    Usually liver problems occur with a high ferritin close to 1000 left untreated for a long time (years). Is your specialist a gastroenterologist? If you have liver problems, they are the ones to see.

    Any problems caused by haemochromatosis are treated in the same manner as those without it, with the exception of vx to get and keep your ferritin levels down. Are yours still within the 50 range? They don't have to be kept that low once you have been de-ironed to <50 but it should be kept at the level where you feel best. So if that is under control, then for your own peace of mind, keep pushing. Is the diagnosis consistent with true medical research that you have read on the internet? Does it confirm what you dr has told you?

    Do you have a copy of your US scan and the report from the previous scan? I have found that some things were not considered important to tell the patient the first time and it appears again next report when done by a different radiologist , which is disconcerting. A CT scan is better for a liver in any case. I suggest asking for one of those.

  • Searcher77
    Searcher77 Chelle69

    Posted

    Hi Chelle69

    I have been told that I don't have HH but I do have the compound C282Y and H53d genotype and will need blood tested once a year. What interested me about your post was my ferritin and TS was similar to yours. I have had issues mainly with gastric issues but had to stop taking Omeprazole as it caused my B12 levels to drop, which have never been high. I also seem to have arthritis like pains and lower than normal platelets. WBC never high except lymphocyte percentage.

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