• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Low ferritin

Hello everyone
Looking for some advice about ferritin levels. Been feeling very rough recently. Have failed entyvio and waiting for wash out so can start stelara. So the Crohn’s isn’t great. Also had a localised infection so had a week of Flagyl. And to ice the cake, last blood test showed ferritin is very low (9) although folate, b12 and haemoglobin all ok.

Symptoms are very weak, shaky, run out of breath just going upstairs, chest pain, aches, no appetite (have lost a few pounds that I can’t spare), exhausted. Occasional high temperature. Generally feeling rubbish.

Negative Coronavirus test, thankfully.

IBD nurse said low ferritin can make you feel absolutely rotten. I’m taking ferrous sulphate pills (allergic reaction to previous iron infusion). But second IBD nurse said she spoke to gastro consultant and low ferritin shouldn’t cause these symptoms.

I’m back on Budesonide I think they might have gone for it steroids in non- corona times.

Any experience and advice would be very welcome.
I have felt this way and had ok H&H (low side of normal)-- then the complete labs come back and ferritin is in single digits -- confirming what I physically felt and allowing a round of infusions without waiting for the H&H to drop further.

Oral iron does NOTHING for me. Have you considered other options for iron infusions? I am from the US so might have different brands that you do - I did well with INJECTAFER® (ferric carboxymaltose) for a while but then developed an allergy to it. Was able to successfully use Venofer® (iron sucrose) until my doctor quit using it at his practice, I think the insurance companies didn't like the cost. Now I use Ferrlecit (ferric gluconate) -- but I really don't like this one as much because it takes 8 doses so at least 3 weeks, sometimes 4 depending on when holidays land (they must be 2 days apart and the infusion center isn't open on weekends). But any of teh three are faster than oral iron.

hoping since I saw this late you have gotten some answers and are feeling better -- make sure to push for a response -- I didn't push hard enough for an appointment in September and ended up too far gone for infusion and needing a transfusion. Saying this not to scare you but to acknowledge that we know our bodies and if something is wrong -- we know we need it fixed
Thanks so much for the advice. I have been in two minds about trying another infusion. On the one hand, it was a proper reaction, within about 30 seconds of starting the infusion I felt weird then passed out and woke up a while later under an oxygen mask. The nurse said I called for help then went bright red and collapsed so they stopped the infusion and put in steroids and antihistamines and eventually I came round.
There are different opinions in the ibd team about whether a different type of iron might work or same result.
On the other hand as you say, oral iron is very slow and possibly won’t work at all as the Crohn’s is active so not sure what is getting absorbed. And the stomach cramps are not fun but whether that is the iron or the Crohn’s I don’t know.
I think I will ask the gastro doc for an opinion on trying one of the other iron infusions. I am still pretty rubbish although managing short walks now rather than unable to leave house (or get out of bed at one point). It reminds me of high altitude trek I did years ago where the air was thin so you breathe in but not much happens.
I have ordered an iron spray off Amazon in the interim to see if that helps at all.

Thanks again for the advice 😀
Tell me more about an iron spray???? Is this colloidal that you spray in your mouth? Would that absorb sublingual you?
It’s from a range of vitamin sprays by a company called Better You they go an iron 5mg and 10mg. I got the 10mg, arrived today, you spray in your mouth against inside of cheek and it gets absorbed into blood vessels so no need for intestines to process. I’m in the UK will try and find a link...