Have you had an iron infusion?

[Sosorryliver]

Went to Gp today as have had abdominal pain/ been feeling rubbish for a while. Bloods came back already and my ferritin is 2, iron 7.7 and something else which is also through the floor. WBC/ liver/ kidney/ inflammation are fine though.

Gp thinks possibly an infusion to give me a bit of a boost whilst figuring out why it’s so low. Has anyone had one and was it helpful? I’ve been feeling under the weather for a few months but I’m plodding on going to work etc so it’s not awful. Maybe it’s a bit like boiling a frog and it’s gradual enough you don’t realise how bad it is.

Yes and it was amazing- took a couple of weeks to kick in but so worth it and super simple to have done

I had one after giving birth. The nurse plonked an ominous-looking box with a label reading 'ANAPHYLAXIS KIT' on the end of my bed just before they started!

I have them fairly regularly - they normally take about 30 minutes and then you have to sit for 30 minutes to check you don't have a reaction. They definitely make a huge difference to me

I’ve had two sfter giving birth and I felt amazing sfter them

Yes they are amazing and work so well.

I had four units of blood, and then some time later an infusion of Ferrinject which sorted me out no end. I was like a flower opening its petals in the sun, I came back to life. Wonderful doctors and hospital. Am glad to be alive.

Yes me! I have them regularly but they don’t last very long (or as long as they should!)

Does anyone know what your levels have to be to qualify? Gp is going to talk to the medics. I had a look on NHS website and it said under 7-8 so wonder if at 7.7 I’m a bit too high.

I was refused one with a ferritin level of 3, and sent away with iron pills yet again. It was first diagnosed as a teenager when I went to give blood and it's always been low with no cause found - and I've never yet managed to get an infusion, I'm jealous of those that have!

I think the boiled frog analogy is pretty accurate. You just get used to having very low energy reserves sadly.

My ferritin is 2 was your hb low as well?

They really are magic. I got two on the NHS when pregnant, and it was like coming back to life.

I looked into them privately before that and I think they were about £400. Not cheap, but if you can’t get one and have the money I’d pay double that.

I had to prove pills wouldn’t work. And then I eventually got given infusions

Yup, they are fantastic, if someone offers you one grab it with both hands. It’ll take a few weeks but you will feel miles better.

I’ve had two and they changed my life so much! I’d def recommend going for it if they offer it to you!

I can't remember the figures now but I recall it was low but not too bad. Still feel completely drained though.

Yes! Had to pay private, very expensive. Would pay double, honestly the impact is substantial.

Get it. Hands down, no question. You get so used to how bad anaemia makes you feel.

Have they looked at why you're anaemic?

I’m doing a FIT sample to check if bleeding in the gut. I’ve been having a lot of upper abdominal pain so Gp has suggested ultrasound and a gastroscopy sp?

I did have a look and guidelines where I am seem to say no infusion unless hospitalised! So I expect the GP request will be declined and it’ll be tablets

Honestly though I think I’ve been low iron pretty much my whole adult life it’s been picked up a few times and six months of tablets later it’s okish ( never this low) maybe I need a maintenance dose forevermore.

@Sosorryliver sounds just like my initial investigations. Nothing internal was found for me to explain it, thankfully, and the last GP (female) put it down to my crazy heavy & long periods being caused by my copper coil. I had to have that out to have the infusion. She initially suggested tablets & I said no cos I've tried them multiple times before & the side effects are not worth how little they help. Tbh I laid it on pretty thick.

Sure enough, my periods are now shorter & lighter & my body has kept hold of the iron.

I'm not sure what the NICE guidelines are atm for infusions but I think it was anything below 9 qualified then there's another cut off off that puts you in the transfusion catagory. It might vary by trust but I'm in Cornwall & they have seen ongoing pilot for this.

@Caerulea Im in Scotland and the guidelines seem to say it has to be tablets unless in need of an urgent boost before surgery or it’s due to cancer treatment. I haven’t heard back from Gp and she was going to call if she could get me in for an infusion.

I don’t have heavy periods and I take a multivitamin with iron daily and have a healthy diet with a decent amount of iron rich food so not really sure why it’s so low.

Well the gastroscopy, ultrasound & FIT are the next logical steps. If the FIT comes back positive they send you for a colonoscopy under the 2wk system (assuming it's the same in Scotland?).

For the gastro take the sedation, no ifs no buts.

If there's no obvious cause for anaemia (periods etc) then they need to find out why. It's definitely not easy cos this leans towards being a woman problem &, well, we all know what that means.

If men were routinely anaemic then infusions would be easy as fuck to get.

If all the above comes back clear & they are still on the tablets route, then I'd pool your pennies & pay. In England I think it's around £600. Tablets will take a long long time to get it up to anything useful & they are, frankly, bloody awful to take.

I had one last yr

Was a different person after

Took my feretin from 8 to 252

Would love another 1 tbh

My medical records state my body doesnt absorb iron from tablets

I had one a few years ago. It was over two sessions and took a few weeks to kick in and was great, brought my ferritin from 7 to around 150.

Tried to get another one last year and my levels weren't quite low enough. I asked and was told that the NHS criteria in my local hospital is ferritin less than 8 and Hb less than 12.

I had to literally beg for my infusions when my ferriton went down to 2, it had been that way for 2 years and I was crashing and burning every day, GP was happy for me to suffer despite me telling her the iron tablets were wrecking my IBS.

Luckily, I was due to have a uterine ablation and when the gynae found out my ferritin levels he refused to operate.

If I hadn't been due to have the procedure I'd still be on my knees.

God knows why they allow women to suffer like this?

Sadly no news on the iron infusion front I do have an appointment for a top and bottom endoscopy next week. I will definitely take Pp advice and get sedated. I’ve heard they are brutal. I felt so ill today I thought I was going to pass out. Horrible stomach pain/ dizzy/ sweaty/ I saw stars or at least bright lights on my peripheral vision. Lots of dark green diarrhoea ( thanks iron tablets) and then poof back to normal but a bit drained. I have emailed a private clinic for a quote. Even if it’s £600 ish it’s the difference between sick. Pay and normal pay for under a fortnight.

They aren’t waiting for the results of the fit test apparently. So possibly the pathway is different in Scotland or the criteria are different.