Non-anaemic iron deficiency (low iron stores), but iron intolerance?

[CarpeJugulum]

What is the next step when you can't take iron orally?

Backstory is that I had my gallbladder out about three years ago, and since then I have had non-anaemic iron deficiency which does tip into anaemia when I'm ill.

Previously had some success with iron tablets (enough to take me out of anaemia) but after about 2 weeks, it causes my IBS to flare up. The last flare up was so bad they had to check on my appendix.

However, the low stores are causing hair loss, probably exacerbated by stress. Liquid iron was prescribed and I've taken one dose yesterday, and I can already feel the symptoms of an attack coming on, so I'm not going to take any more (I've told the GP and they agree), and I have an appointment to discuss after my holiday.

I'd like to know what they might offer me, or what I can reasonably ask for?

[RockinD]

I had non-anaemic iron deficiency and was completely unable to take ferrous sulphate or ferrous fumarate, the standard NHS remedies for this condition, because of awful GI effects.

My endocrinologist put me forward for an iron infusion, but the haematologist vetoed this. He did not seem to understand this condition and tried to tell me that my symptoms were caused by stress. However, you may be luckier. A work colleague had an infusion and basically got sorted instantly.

When I was in complete despair, with levels falling again and no help in sight, these were recommended to me by someone on Mumsnet and I am now OK (and I have hair).

www.cytoplan.co.uk/Wholefood-Iron-3312/

[CarpeJugulum]

Thanks; infusions I suspected were the only alternative.

I suspect I'm going to have to lobby hard for infusions as I'm now back on my IBS tablets; and that was one dose.

I did try iron supplements not actual tablets, but they did nothing for me, the GP thinks because of my lack of gall bladder.

T'is a pest!

[Verynovicegardener]

Hi Carpe

Just wanted to say I also have this issue, am due to see GP again about it tomorrow. I have basically zero ferritin ( less than five, should be at least 70). Can't even tolerate the 'best' form of iron ferrous glauconite, last attempt I got anal fissures ( sorry if tmi) and if also messed up my ibs too.
My hair is so thin at the front it's starting to affect my self confidence and I have zero energy.
I am hoping the GP will suggest an infusion but I am doubtful,as apparently they are v expensive.
Would love to hear how you get on.
Novice

[CarpeJugulum]

Yes to the thinning at the crown! My lovely hairdresser has cut it so I can pull a fringe from further back, but under strig light it still looks terrible (to me, friend say they can't see it, but I can!).

My side still feels ghastly (like a stitch that won't go away) and that's with it being on Thursday night.

Appointment isn't for a few weeks as I want to see the same GP for continuity (his holiday then mine), but am crossing everything that they see it as a major issue. And it is to me.

Will update when I've been, but hope you get what you need!

[Verynovicegardener]

Thanks Carpe, I'll update too after I've seen GP on Monday (not tomorrow!:-)

[inmylife]

Have you tried Floradix/Floravital? Liquid, not tablets. Sold in health food stores. Very easy on the stomach.

[MuscatBouschet]

I agree that you should use floradix and eat plenty of red meat and green veg while arguing with the docs. If you don't hanged your diet then I doubt one iron infusion will be enough.

Also, note that not all iron infusions are the same. The cheapest infusion - can't remember the name - can cause diarrhoea and irritate the gut.

[idlevice]

Iron supplements with iron in haeme form are supposed to be the most efficient in terms of amount absorbed per tablet. You can get them on the net. Good article here about iron absorption. In the past people had iron injections but not sure if they are still an option these days - easier & quicker than transfusion though.

[strawberryjam]

Watching with interest I am maintaining my HB at present but ferritin is 4 am waiting to hear if I am going in for an infusion (am nearly 36w preg)

All supplements so far make me vomit including Floridix and spatone

[CarpeJugulum]

I've tried just about everything - my stomach and associated areas just doesn't want to know about it.

I've managed (via diet) to bring up my actual iron levels, but my stores remain permanently low - a cold or anything stressful and I go wonky again.