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

Waiting on test results for Heamachromotosis. How long should they take?

Posted , 6 users are following.

sunni13905
sunni13905

  I had bloodwork done once a week for a month and all my levels were elevated.  I was sent for the genetic testing and still haven't heard back. I had the testing done over 6 months ago. Some of the symptoms I can see in both myself and my mother.  Thinning hair. skin tone...heart problems.etc.  I'm only 39 but have been having these symptoms since I was in my early 30's and like you thought early menopause. I also had the same type of hyst. Though I live in Canada my ancestory is of Irish,Scotish and English descent.  I've been thinking of actually changing doctors because the one I'm currently seeing doesn't seem to have many answers.  One issue if I do have it is I don't do so well with bloodletting.  The first two times I did it my blood pressure dropped that much that I passed out.  The doctors have recommended that I don't do it anymore.  Can anyone shed some light on the amount of time it should take to get these results back?   Also has anyone used the medication instead of the bloodletting?

2 likes, 20 replies

20 Replies

Prev
  • sunni13905
    sunni13905

    Posted

    Hi Folks,

    Finally got my results back after months and months of back and forth and nobody knowing what happened to them. apparently I have 2 files at the hospital. one had my middle initial and the other didn't. The results went into one and they've been checking the other.. real bunch of genius... anyhoo.. Test results say that I don't have HH but I do have one of the mutated genes.  Which the doctor didn't say.  Mu question is can you still have a lot of the symptoms of HH while only having this one mutation????  I was recently diagnosed with NAFLD (Non alcoholic fatty liver disease) and the doctor said that this was the reason my Ferritin leves were high.  Would liver disease cause my ferritin to keep rising because now it's over 300.?

    • marie86421
      marie86421 sunni13905

      Posted

      Hi Sunni,

      Pleased you finally got your results. 

      You need to find out what the one mutated gene is.  I was told that I had H63D, one copy, and that I should not go on to develop HH.  My ferritin levels were circa 2700 at time.  It was not until two years later that a genetic test was done and found that I had a mutation on the FPN gene called SLC40A1 as well. 

      I have one copy of this gene and that is all you need to load iron. 

      You don't mention your ferritin or transferin saturation levels.   Is you ferritin going in an upwards direction only?

      I don't know if fatty liver disease can cause ferritin to rise.   I can't help you there.

      Best wishes

      Marie

    • sunni13905
      sunni13905 marie86421

      Posted

      my ferritin is only just over 300 (324). it has gone up from 165 last christmas when I was diagnosed with High Iron.  I had a hyst 6 years ago and I have many of the classic symptoms of HH.  I will definitely find out what the gene is now.  Thanks for the info!
    • sheryl37154
      sheryl37154 sunni13905

      Posted

      Yes, fatty liver disease does make your ferritin high.  Eliminate sugars and starches to reduce it.

       

Back to top
Prev

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.