1. Community
  2. Blood & Immune System
  3. Haemochromatosis

Just been diagnosed

Posted , 7 users are following.

annalisa1983
annalisa1983

Hello guys, I am Anna and I am 32, got my 1st haematology appointment at the end of July, for my haemachromatosis.

I have also been told I have an over active thyroid, I took a bad turn about 2 months ago and I was dizzy and tired so my doctor signed me off work but now I have hit a trigger in work and have a meeting Tomoz ??.

Just wondering if anyone has any info on my condition, and if anyone can clarify if I have to live with this for the rest of my life, I need to go into work with a decent argument as obviously if it's a long term illness they can't punish me ??.

Thankyou xxx

2 likes, 5 replies

5 Replies

  • mike80628
    mike80628 annalisa1983

    Posted

    Hi Anna. I'm Mike. Welcome to the Iron Gang. Have you had a ferritin level test yet, the amount of storage iron in you? Normal range is about 50-200. Mine was 2000! So I've had a year of weekly venesections, blood letting, the only way to treat Haemochromatosis.

    Too much iron can affect organs, liver, heart, thyroid etc. If left untreated, it's very serious and life threatening...so yeah, tell your work it's a serious condition IF not treated.

    Haemochromatosis is a genetic condition which you do have to live with all your life...BUT, if no real damage has been done, and it's caught early, then you can pretty much carry on and live a normal life, but you'll have to always give blood from time to time, could be 3-4 times a year for the rest of your life, which is not exactly horrendous, plus you can do this as a blood donor, saving lives at the same time!

    Thyroid conditions can be treated with medication, so that might not be a real issue.

    What are some of your symptoms? For many it's fatigue, and joint pains. I have joint pains in my hands...and that was it for me. On the other end of the scale people can have serious liver damage caused by the excess iron.

    Well, that's just a few points to share...I've loads more to share...please ask any questions you want. It's not the end of the world....the support here is brilliant......chat soon...Mike.

  • laura13882
    laura13882 annalisa1983

    Posted

    Hi

    Just thought I would drop a reply to see how your appointment went.

    My mum was diagnosed with heterozygous haematomachrosis and I have just been tested and told I'm homozygous with c282Y. My ferritin in may is sitting at the 200 mark so not overly high but I will be going to haematology for venesection next Thursday.

    I've been lucky with my referral because my mum is having treatment so my GP was fab at getting everything sorted quickly. The only symptoms I have is constant tiredness but I had put that down to shift work for years and joint pain. Anyway if you fancy a chat sometime to compare notes give me a shout.

    Laura x

    • gina38206
      gina38206 laura13882

      Posted

      Hi Laura

      just curious to know how you got on with venesection. I'm waiting on appointment with local hospital...waiting list. Was it just like taking blood at doc's? And did u feel better after first withdrawal? My levels are at 265...just really tired all the time

      Gina x

    • laura13882
      laura13882 gina38206

      Posted

      Hey sorry for the slow reply.

      It's just the same as donating blood except it gets discarded but same bag etc.

      I don't feel better but to be honest I wasn't expecting to. I was tired and bevause of the weather my joints have given more issues than usual. My consultant explained from the start it's not an instant "cure". Unfortunately it's just something that can only be controlled. I go back in 6 months because I've just changed job so I'm limited to taking time off and I get blood tests through work so I'm monitored anyway. I'm just going to watch my diet etc and try to keep my numbers steady that way.

      Mum's venesection has stopped for a year because of other medical problems and her age she is now anaemic despite still having high numbers.

      I wish I could say I left after it and felt a million times better but it's going to take time.

      Laura x

    • gina38206
      gina38206 laura13882

      Posted

      Thanks Laura. Am so tired all the time was hoping that will improve. Levels are only 265 so not too high but on waiting list with hospital for first withdrawal. Hoping they'll call me soon. Good luck with the new job

      Gina x

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.