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Recently diagnosed with haemochromatosis

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lafferty12
lafferty12

I have recently been diagnosed with haemochromatosis after nearly a year of my high iron levels being blamed on the fact that i am overweight. I am now getting pains in my hands and fertilty issues which i know could be linked to the condition but my GP is refusing to accept that stating it only affects the liver. I know this is rubbish but the waiting time to see a specialist is currently 12 weeks. Im only in my early thirties, any advice would be appreciated.

1 like, 11 replies

11 Replies

  • tomironoverload
    tomironoverload lafferty12

    Posted

    Once again and uninformed GP, join the UK society for a tenner, you'll get a booklet explaining all, there's a uk society group on Fbook with over 2000 users and very responsive, what's ur Ferritin?
  • PaulRL70
    PaulRL70 lafferty12

    Posted

    Can effect all your organs even your eyes - Your prob caught it just in time I started section end March this year and I'm just almost at the end of the weekly sections. Weird because your on one side of the Rm getting rid of the iron and people are on the other side having infusion for low iron. Seems to be a lot of asian females with low iron counts noticed. 
  • lafferty12
    lafferty12

    Posted

    My ferritin was 408 in April and saturation level 72.5% hes refusing to check it again as he knows whats causing it now. His ignorance is just building my anxiety.

     

  • lafferty12
    lafferty12

    Posted

    Maybe i'm just being impatient as now i know there is a problem i want it fixed 12 weeks just seems a long way away and thats just to see the consultant seems an age away. I work for the nhs and here about low iron all the time, trust me to have to much of what so many people need lol

     

  • lafferty12
    lafferty12

    Posted

    I have been referred to a gastroenterologist is this right? or should it be a haemotologist ?
    • tomironoverload
      tomironoverload lafferty12

      Posted

      Venesections can be managed by either, it levels aren't typically associated with organ damage, that been said, get on the Fbook group and ask can anyone recommend a GP in ur area
  • Katy8103
    Katy8103 lafferty12

    Posted

    Hi Lafferty12

    I'm also early thirties and just been diagnosed. My ferritin is 765, trans sat 77%.

    I have been going through IVF as my partner had chemo when he was younger. I've had two failed cycles resulting in early miscarriages so went to my doctors to get checked out. That's when they discovered the high iron levels.

    My GP said it could possibly be affecting my fertility but there's not enough research been done to investigate this to say for sure. I'm convinced it's causing a problem. I've put treatment on hold until my iron levels are down to a safe level through venesections. At that point we'll try again.

    I can't believe your GP is saying that it only affects the liver! Even the official NHS website states it can affect the liver, heart and joints. I was lucky to have a good GP and my wait to see a specialist was only 5 weeks. You could look into going private just for the consultation. My GP said I could go this if I wanted then get the private consultant to refer me to the NHS for venesections. The cost would be about £150-250 depending on the consultant. Might be worth looking into to get in sooner.

    May I ask about the fertility issues you are experiencing? Are you trying to conceive now? As I fear I'm having the same problem it would be good to share stories.

    Katy x

    • lafferty12
      lafferty12 Katy8103

      Posted

      Hi Katy

      No we have decided to stop trying until my iron is under control and hopefully this will bring my monthly cycles back to a regular pettern. I have had two miscarriages both got to about 11 weeks before difficulties. After my second miscarriage i haemorrhaged and the drs commented on why the haemorrhage didn't seem to affect my iron or haemoglobin levels now i know why, it was already too high !. It is a real shame the NHS don't investigate. miscarriages until the third one. It would have saved a whole lot of heartache. They are never going to have any research into HH and fertilty unless somebody accepts the link between infertility and high ferritin. I like you am sure it can't be a coincidence.

    • Katy8103
      Katy8103 lafferty12

      Posted

      I'm sorry to hear about your miscarriages Lafferty12. It's interesting how we are both experiencing similar issues although my miscarriages were both at 6 weeks. I really hope that bringing our iron levels down will help our fertility problems. My first venesection is tomorrow so it will be some time before we try again.
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