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

5 years on: ferritin great, but TIBC low (sat % high). Should I worry/act?

Posted , 3 users are following.

chrisphl
chrisphl

Hello, 40 y/o male, I've been receiving treatment for HH for 5 years, and am doing well now. With my ferritin numbers down consistently to 40, my new hemotologist (I recently moved) is pushing my phlebotomy timing out from every 3 months to every 4-5 months. However, my % saturation remains high (iron at high normal, TIBC below normal, values below). My new hematologist seems fine with this, saying ferritin is what matters and my iron is always going to be high with HH. I'm not sure if I'm totally confident in that, as I target a really health lifestyle, so I figured I'd ask the community if anyone else has insight or opinion. Thanks!

Chris

FERRITIN - 38 ng/mL

IRON, TOTAL - 179 mcg/dL

IRON BINDING CAPACITY - 235 mcg/dL

% SATURATION - 76%

0 likes, 1 reply

1 Reply

  • miller.jones
    miller.jones chrisphl

    Posted

    This is the training talking which is why he is stating this its the only one he has most of them are like this.

    What do you think you could do in your life to try and change the numbers?

    (lifestyle/diet really does make a difference even when they try to claim it doesn't)

    They have no other options available and are not open minded.

    Unfortunately regarding if your number is high or not we do not have any real human research it could be you are a person that is the number your body wants to be at others it can be different this is why a lot of the benchmark numbers that are always thrown around are not the full truth RDA are the worst not based on any creditable science.

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.