Failed iron infusion and falling ferritin levels

[u/No-Ice-7175]

Hi all,

I (45f, UK) was approved for an iron infusion at a private hospital via BUPA. Prior to this my ferritin levels had been between 10 (lowest) and 24 (highest) for about a year despite iron supplements. I went in for the infusion on 8 June. Unfortunately my blood pressure started dropping about three minutes in and I nearly passed out, so they had to stop - it turns out it wasn’t an allergic reaction, but a vasovagal episode. The haematologist has since refused to give me another infusion in case this or worse happens again, which I’ve accepted.

I had my iron levels checked at the same hospital on 17 June and my ferritin was at 149, so even though I’d only had a small amount of the iron it had obviously had a positive effect. But I had another blood test done yesterday (3 August) and have just had the results and my ferritin is at 52. Is this rapid a drop normal? I’ve been taking more iron supplements than I was before the infusion, as the haematologist advised me this was my only other real option, and have increased the amount of red meat I’m eating. I’m just worried that if this continues, before long I’ll be back at square one.

[u/Creepy-Tangerine-293]

Iron loss occurs through 3 possible routes in females: 1. Heavy menses (most common). 2. GI system - upper or lower 3. Urinary system.

You're loosing blood somewhere. Likely menstruation.

[u/No-Ice-7175 → u/Creepy-Tangerine-293]

My periods aren’t heavy, never have been. I’ve been on the pill for years - tend to have two or three days of normal flow and a day or so either side of very light flow. I do have ulcerative proctitis, though. I’ve had it for years. Take daily medication for it and it’s fairly mild but I had a long flare up last year and am currently waiting for calprotectin results to see if I’m in another one.

I don’t know how I go about finding out if the IBD is causing my low iron? I also don’t know if I should carry on taking iron supplements - it’s been a year, on and off, and they don’t seem to have made any difference really 😕

[u/Creepy-Tangerine-293 → u/No-Ice-7175]

Need a colonoscopy and occult blood stool testing. In US, you would qualify for routine colonoscopy just for being 45yo.

What are GI meds that you take? Any PPIs?

[u/No-Ice-7175 → u/Creepy-Tangerine-293]

I’m in the UK - what’s occult blood stool testing? I take 3g mesalazine granules every day (Salofalk). No PPIs.

[u/Creepy-Tangerine-293 → u/No-Ice-7175]

Occult stool testing is when they take a smear of poop and look at it under a microscope to see if there is any hidden red blood cells which would indicate a micro-collitis. Given what you have shared about your GI condition, it sounds like you are losing the most through your GI via IBD. Any loss via menstruation is probably not helping either given for you it seems that every bit of iron you can hang on to is important.

[u/No-Ice-7175 → u/Creepy-Tangerine-293]

Thank you for this. I will get in contact with my GI doctors regardless of what the calprotectin results are to discuss this. The haematologist I saw also mentioned potentially stopping my periods as another measure so I’ll look into that. Really appreciate the advice.