Pernicious Anaemia Society
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high ferritin - low serum iron

Morning all,

spoke to GP Thursday, told her all the latest symptoms since they stopped my iron meds that I've previously had to take for some 18 years (head hurts, fat tongue, frequently taking deep breaths, blurred vision sometimes) and that I'm *really* struggling with the fatigue and beginning to get a little worried, she can't do anything until she hears back from Gastro, supposed to have written early April, I say supposed because I rang Gastro yesterday and they've not had a letter!) .

Asked if I could have another blood test to see if it's gone even lower (went below range April 2016) last one was in December (8.2 range 11.5 - 30 , she said "there's no point, it's just number, we know it's low,", asked if there was a number it could drop to where it becomes serious, she said "I don't know"!!

asked (again) for a referral to Haematology, she said, "we have to wait until we hear from Gastro" so no further forward, no progress, feel like I'm banging my head against a brick wall.

I have come to the conclusion that this is anemia of chronic disease but who am I to say!

3 Replies

Hi catalonia13 I'm not medically trained but I've been on "iron meds" for over 40 years and take ferrous fumerate 210mcg every day. This was, if my memory serves me correctly having been diagnosed with P.A. in 1972 and previously having been anaemic my iron levels repeatedly falling after medication. I was referred to the local hospital and after further tests was told that I would need to take iron pills for the rest of my life because I am unable to absorb it due to having had two thirds of my stomach removed in 1959.

Ask your doctor to check your Folate and B12 levels as these help iron make red blood cells



got a copy of the letter from Gastro to my GP , clearly I'm losing the plot or gastro are talking about a completely different patient!!?

"her ferritin has always been elevated" -

WHAT.....?? I've had IDA (iron deficiency anemia) for some 18 years and had to take iron daily until my ferritin went above range a year ago

"she was not even anaemic when we last checked" - HELLOO ..... it went below range last April, last test Dec 2016 it was 8.2 (range 11.5 - 30) is that not anemia then......?

"still withhold the iron tables and only treat when we have clear evidence of iron deficiency"

I DON'T have iron deficiency now, I have too much in stores (ferritin) and not enough circulating (serum iron) , BIG difference, and apparently taking iron could be dangerous.

Linda - currently tearing her hair out, spitting nails and needing to calm down!


update, had a pelvic scan yesterday (requested by Immunology) apparently my spleen is enlarged, not massively but at 14cm it is bigger than he expected!


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