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

Just diagnosed ferritin 950

Posted , 4 users are following.

joyce1959
joyce1959

I have been unwell for so long and knew something wasn't right. I have suffered depression and abdo pain and palpitations for years. It was chance that another gp did my ferritin as I was feeling so tired. Consequently I am waiting to see a consultant gastroenterologist in August I've had the transferrin blood test, but heard that on reading somewhere that the hfe genetic test takes 3-4 weeks I contacted the hospital to see if that should be done at my gp surgery. They said yes, but dr says it's done at the centre for life who deal with genetics? Who is right does anyone know? Or does the consultant refer on?

1 like, 11 replies

11 Replies

  • pete_15992
    pete_15992 joyce1959

    Posted

    Hi  Joyce

    I had my first blood test showing a  serum ferritin of 1050 about 8 weeks ago, then a second confirmation test at my local GP's at which time they also sent a sample to a hospital for the genetic test (the local health centre is not equipped to do it). It took 3 weeks to get the genetic test result back which is a apparently a normal lead-time - though it does seem a long time when you're waiting for it.

    So I don't think you need to wait to see the consultant before having the gene test - the GP can request it - I guess any suitably equipped hospital can do it.  3 -4 weeks sounds about right to wait for the result.

    I got confirmed as having haemochromoatosis so next step is seeing the consultant who should then refer me for treatment.

    Hope all goes well for you, take care, Pete

    • joyce1959
      joyce1959 pete_15992

      Posted

      Hi Pete thank you for your reply, I thought it must be a straight forward test at the GP Surgery. I will have to contact them again to arrange.

      What were your symptoms on diagnosis?

  • sheryl37154
    sheryl37154 joyce1959

    Posted

    Your Transferrin Saturation % is also an important diagnostic test for hereditary hemochromatosis.  If it is >45%, it is quite like to be HH.

     

    • joyce1959
      joyce1959 sheryl37154

      Posted

      Thank you for that Sheryl! Yes I think it was 75%.

      Can I ask you what your symptoms were before diagnosis? I've been quite anxious about it all, just can't wait to get sorted.

    • sheryl37154
      sheryl37154 joyce1959

      Posted

      Mine was extreme fatigue, then body pain, not just joints, but it felt like my whole being.  Then especially my left hip and leg, then 1 year before diagnosis, left side chest pain (constant).  Then 9 years after the onset of these symptoms, my left hip broke up from osteo necrosis - my blood was so thick with iron that it was blocking the fine capilliaries that feed the bone, so the bone died.

      As a result of all the hard work of members of haemochromatosis associations, there is more awareness now of HH.  Look for your country's haemochromatosis association online and download info from them.  You can call them with queries as well, and ask them to send you information (for your dr if necessary) and your relatives, and anyone else who is interested.

      Don't be anxious, it is treatable and venesections are better than chemo.  Your 1st degree relatives should be able to get free tests because of your diagnosis.

      Avoid a biopsy of the liver, they can see by scans now.

       

    • sheryl37154
      sheryl37154

      Posted

      For women, quite often the symptoms are like menopause, or manopause for men!  You can also feel like you have foggy brain, forgetful, depressed, moody.   This excess iron is better out, than in!

       

    • joyce1959
      joyce1959 sheryl37154

      Posted

      Hi Sheryl

      I can't tell you how relieved I am since your message. I have been unwell for so long and believed it was all menopause, depression being the worse symptom. Like you said it's the body pain too, I feel bloated and lack interest in things. Can't wait to see the consultant and get sorted! Thanks again, take care!

    • sheryl37154
      sheryl37154 joyce1959

      Posted

      Yes, if we unknowlingly have HH and are going through menopause (which is when we start loading iron) our menopause symptoms are a double whammy.  HRT does not seem to work because we also need those venesections.

      Luckily I was put straight on to oestradiol when I had to have a hysterectomy and oopherectomy at age 39, but the symptoms of HH decended severely because I was not menstruating.

       

    • joyce1959
      joyce1959 sheryl37154

      Posted

      It all makes sense now! Having a bad day today, feel like I've been on the drink, have a migraine, no energy. Thanks Sheryl! X

  • pete_15992
    pete_15992 joyce1959

    Edited

    Hi Joyce,

    I went to see GP with joint pain and he did a suite of blood tests which picked up high ferritin.

    By the way the literature I've read says anything below 1000 is very unlikely to cause permanent damage.

    • joyce1959
      joyce1959 pete_15992

      Posted

      Hi Pete

      Thank you for your message, that gives me peace of mind!

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.