High Iron levels but NHS thinks they are normal

Help.....I'm really at my whits end with the NHS. I paid to have blood tests done and they came back that I have high Ferritin levels so I went to my GP to have the NHS run blood tests also and the results are apparently normal according to them. I have hyper-pigmentation, strong heart palputations and a metalic taste in my mouth plus the test showed high levels in the blood tests I paid to have done. I don't understand.... It just seems like if I'm not half dead the NHS doesn't do anything. I have to pay to have phlebotomys done now. This is so depressing....

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8 Replies

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  • Do you suspect genetic haemochromatosis? Have you had private testing for your transferrin saturation etc. if the NHS panel didn't include them? haemochromatosis.org.uk/hae...

    ETA: there is a forum on HU: healthunlocked.com/haemochr...

    High ferritin can be indicative of increased inflammation levels. Do you have a print out of your blood test results and ranges that you can share (whether they're private or NHS results)?

  • Taurinegb,

    High ferritin is not the same as high iron. High ferritin usually indicates inflammation or infection somewhere in the body. Having autoimmune antibodies can raise ferritin too.

    What are your ferritin results and ranges?

  • GPs tend to run full blood counts and nothing else. What tests were run on you via the NHS? What are the results and ranges? What tests did you do privately? What are the results and ranges?

  • As Clutter mentioned, high ferritin can often mean inflammation. You can be at the very top of the range but I think the condition for releasing iron is several times the high range. From STTM:

    CANADIAN LABS AND RANGES:

    Serum Iron (range) Optimal results are usually in the mid-20’s for women, upper 20’s and higher for men)

    Percent Saturation: same as US observations i.e. .35/35% for women is the ideal; .38/38% and often a little higher for men.

    TIBC: when range is umol/L >45-77, low 60’s is noted when iron is looking good. If range is 50-70 umol/L, usually 1/4th above bottom of range.

    Ferritin: range is often 15-200, and optimal for most women is 70-90, for men it’s 110-120.

    Note: 60% of patients have a hematologic or neurologic response to B12 supplementation at a level <148 pmol/L

  • Hello,

    My private test results are:

    Ferritin 262.9 ug/L normal range is 13 - 150

    Iron 24.06 umol/L normal range is 6.6 - 26

    The Iron is fine, just the Ferritin.

    I just ordered some S-Acetyl Glutathione and Resveratrol hoping that they help with some of the inflammationand maybe it will reduce the Ferritin levels also? I will also try the anti-inflammatory diet but still think I need to have a few phlebotomies done to lower the Ferritin levels?

    If the optimal range for women is 70 - 90 I'm very high and I pretty sure my body is not coping with it well due to the hyperpigmentation, heart palputations and metalic taste in my mouth. If my doctor won't do them can I pay to have them done somewhere in the UK?

    Thank you

  • Couldn't you just give blood? It's free and the donation would be appreciated (I think).

    Check your eligibility here :

    blood.co.uk/who-can-give-bl...

  • Hi Humanbean,

    I did once already after the tests but they will only let women give blood 4 times a year, every 16 weeks and that's not really enough.

  • I hadn't realised that. :(

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