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Confused

Posted , 4 users are following.

Keano59
Keano59

Hi all

I had a ferritin reading of 497 with really bad fatigue,headaches,brain fog,joint aches and stomach issues.My transferrin was also raised.My gp told me I had hemochromatosis and was referring me to hospital.The next day she rang me and said I had to be retested a month later at the hospitals request which came back at 395.She then said the hospital would not take my referral as it was now below the new NHS guidelines for hemochromatosis  of 400.I pushed to be gene tested which came back possitive for only one of the defective genes and was told I hadn’t got hemochromatosis?.My gp then said I have got chronic fatigue syndrome and referred me to hospital for that.The specialist there won’t confirm my gps new diagnosis of CFS/ME because of my high ferritin and wants my Gp to carry out a third set of blood tests for ferritin as believed this is causing the fatigue.I am getting really frustrated and feel dreadful.

1 like, 4 replies

4 Replies

  • framac
    framac Keano59

    Posted

    I feel your pain and your frustration..I didnt realise guidelines were now 400 for venesection. Its troubling that there seems to be no support or help. Im the same one less dominant gene the other dominant but just the same im feeling worse the more my levels incresase and im not at the levels you are. Given that this is a life threatening illness i cant really fathom why theres not more support..its on the increase. I hope you get the help you need sounds like your having such a rough time.
  • ellen12819
    ellen12819 Keano59

    Posted

    I am sorry you are having such a rubbish time and 400 is a new number to me I was told above 300 but goals change and we hope doctors know somewhat more than us patients. You should try and help yourself, first cut your intake of supplemented Iron. The amount of iron that is put in food , all white flour  in the UK and USA is spiked with chemically produced iron by law ... which is huge! So never eating the white will significantly cut the exhaustion. Read packets! eat non enhanced wholemeal only, if it says iron anywhere on the packet don't eat it. All packet breakfast cereals, cakes, biscuits, pastry Yorkshire puds are now a no. Vitamins are often built around Iron supplements so stop taking them or at least done take ones with iron or vitamin c in. Stop taking any orange fruit or juice. Vitamin C transports iron straight to your liver.  Doing those two things will be a big help to increasing your energy.  Meanwhile I would ask or copies of all your blood work. Some people on here are very educated in the understanding  of those results, where GP'S do not all have enough information. I wish you luck and hope my advice is taken seriously we have to help ourselves the best way we can.

    • ellen12819
      ellen12819

      Posted

      Keano59

      Sorry, I should say other than cutting out the obvious white and vit C you should try and eat a balanced diet. The non heme iron in veg gives more goodness than iron. And you need to up your dairy, drink milk or milky tea with food  it coats the iron and offers protection by not being absorbed by the liver. Look up heme and non heme iron and you will get more info. If you don't have HH  these things will not make you worse. Good luck.

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