iron levels - exasperated!

Evening everyone,

Not sure whether I just need a rant, or advice tbh, but I've just about had it with my GP, maybe time for a change?

Briefly, I am hyperthroid (75mg per day) have had Thyroid Eye Disease twice, am IgA deficient, have low Vit D (on meds for that) and was diagnosed Coeliac in Feb this year.

Some 10/12 years ago I was called in following a routine 6 monthly iron test to be told I would have to take iron for life (normally there'd just be a script waiting for me) as my body would never store any excess iron, they presc 200mg per day, this was doubled some 3 years ago when I was unable to give blood ( donate) as iron levels too low then, in Nov last year my levels suddenly went above range, just had another test (after pushing for it) and they are still above range at 344ug/L ( 23.0 - 300.0) and yet again, the GP has stated on the form "no further action", surely someone should be looking into this.......?

6 Replies

  • Catalonia13,

    I assume you have stopped supplementing iron. It's not much above range so probably just needs monitoring every 4-6 months.

  • I didn't to start with Clutter, having been told all those years ago I HAD to take it for life I was reluctant to, the last thing I needed was anemia so in agreement with the GP I cut it down to one a day, in March I cut it down myself to one every other day (they didn't want to see me, the usual No Further Action) and then I cut it out completely about 6 weeks ago, again, off my own back.

    But surely if I had to have it, then suddenly I don't, shouldn't someone be looking into why this drastic change?

    Correction to my last post, I'm HypOthyroid, not hyper!

    And just to add to my woes, I have Shingles (diagnosed as such 2 years ago but I'm sure it isn't) back again, must be over a dozen times in the last 2 yeas, I even have Acciclovir on repeat prescription but again, no on one is looking into why I keep getting it :(

  • and they don't monitor it either, I pushed for the test in March, she reluctantly agreed, at the same time I asked about seeing a Hematologist, as suggested by the ME specialist last July (becasue of the need for long term ferrous sulphate which she was highly concerned about) I eventually had a gastroscopy in Feb to see if I was bleeding internally, I wasn't but the biopsies showed Stage 1 Coeliac, not that the doctor even bothered to let me know! I asked again 2 weeks ago, she said she'd refer me then didn't, said she'd spoken to them and they didn't think I had iron overload (yet they were looking for why I need to take iron) but she did request the blood test taken this week

  • I think you're right to be concerned. High ferritin - especially given you've found it hard to raise it - is a sign of inflammation. Have you felt unwell recently? Been accidentally glutened lately? If so, it might simply be that, but it would be worth pushing for a full liver function test to see if everything is as it should be.

  • turns out I have shingles, that probably isn't shingles again, see above post!

  • and I haven't felt well for the best part of 5 years now, got signed off sick Sept 2014, mainly fatigue/lethargy,no energy, takes me about 2/3 hours to get going in the morning, once I do I'm fine but I still have to pace myself (and I often forget that!) :)

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