Extremely low ferritin, no transfusion accepted. What else can I do?

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My ferritin levels are critically low (18) but because my haemoglobin is normal, the doctor has said no sort of transfusion will be accepted as I am not anaemic.

I already take supplements to support my ferritin and they’re clearly not working, but the doctors think that I should just get on with it.

For context, my hair doesn’t grow past my shoulders, I am extremely tired every day, I have lost so much fitness (struggling with breathing) and I have palpitations frequently.

What else can I suggest? Feel at a loss here :(

This company called Get a Drip do iron infusions, you need a blood test within 4 weeks showing your levels.

I’ve seen them in Westfield Shepherds Bush

Ahhh my ferritin has come back at 16. It was 15 a year ago. Still waiting for FBC etc but from that, I am assuming my haemoglobin will be similar to what it was last year. I am going to take iron and ask for a repeat in a few months time. I can’t afford £1k for an infusion. I wish I could. I feel utterly depleted.

I did wonder if the insta person was talking rubbish........

Despite having bad side effects from the two iron infusions I've had, they were still incredibly effective. Walked in barely able to function, within a few days felt full of energy.

They do work, but good monitoring afterwards is important and if you don't fix the root cause they only last a few months so it could get very expensive going private.

Ive been taking 2 (200mg) ferrous sulfate tablets a week along with a vit C tablet and laxatives (only at the same time as the iron tablets). I take these just before bed so I've not had any tea for hours.

My levels have gone from low double figures in January and are now up to 35! This is the only tablet I have been able to tolerate (probably because I've been given laxido at the same time for once) but it is slowly improving.

Can I ask why you don’t prescribe it? Why refer back to Gp pre op? It would be much better for the patient.

Its complicated. Obviously we prescribe and give the IV iron as that’s done in the clinic. But we don’t always have a doctor to prescribe in pre-op as it’s a nurse led clinic. The nurses can give up to 7 days of oral iron on a once a day regime on a special protocol as long as certain conditions are fulfilled (a PGD). This is meant to tide them over until they can get a GP. And we’re training a nurse to become a nurse prescriber but the course (rightly) takes a long time so we’re not quite there yet. But it’s a long term prescription so needs to be managed by the GP.

But ultimately the frustration is that no one has thought about it before they get to Pre-op. By the time we see the patients it’s max 6-8 weeks, usually less, before the operation. And they’ve been iron deplete for a long time before that. And oral iron takes months to work.

My most recent ferritin level was 12 (2 months ago) and it’s been that low for about 13 years now.

I was in iron supplements during both my pregnancies and for periods after them (13 and 9 years ago) but I have been on consistent prescribed iron supplements for almost 8 years now and the highest my ferritin level has ever been is 15.

The only time an iron infusion was ever suggested was a month prior to my planned c-section with my second pregnancy because they weren’t happy to do the procedure when my ferritin levels were so low.

As it happened I went into natural labour anyway before my c-section date so nothing came of it.

But yes, generally health care professionals don’t really care about low ferritin levels in women or how exhausted we feel as a result.