To ask you to help me get an iron infusion on the NHS.

I'm so sorry, this is such a common story on here. I've had two iron infusions, but only because I was under a haematology team for cancer. Im due to be discharged soon and not sure what I'll do going forwards, I can't tolerate any iron supplements and my levels are right back down within a couple of months of an infusion. If you don't fix the underlying issue, even if you do manage to get an infusion you'll need them regularly - it's not a permanent fix.

Mind you I wouldn't get another iron infusion anyway - both times it's caused my phosphate levels to drop to zero and I've been rushed in for phosphate infusions, which have in turn caused other problems.

I've recently been trying an oral spray (better you? You can get it from supermarkets etc). You spray it inside your cheek and as it bypasses your digestive system it shouldn't give side effects. I've been taking it for a few weeks and my stomach has been fine but I don't know if it's worked yet - I have a blood test next week. My wee comes out bright yellow after I take it which makes me suspicious it's just not being absorbed.

It's unlikely to be life changing with those levels. You won't feel significantly different unless you have extremely low haemoglobin.

Sytron liquid is the best tolerated. It's tolerated orally by premature babies. Anti sickness can be prescribed with it if nausea is a problem - a GP can easily prescribe some anti sickness.

I've had a lot of iron infusions as have had life threatening anaemia needing many blood transfusions. The iron infusions reduce the units of blood I need. I have been left with some nasty scarring from the iron infusions (looks like a dirty black mark over my forearm) this is a fairly common side effect & I'm sure if you Google some pictures of iron stains you may be less keen.

This is shocking.
Iron glysomate can be gentler on your body and easier to absorb. Might also need vitamin C tablets to help with absorption.
Could be worth contacting a nutritionist for support with diet and supplements.
I have low iron levels which GP did nothing about but my homeopath is supporting me with supplements to help.

I know OP said she didn't want to take the pill but I think in her situation I would.

Have you been tested for pernicious anaemia?

I have been having the exact same issues for nearly a year now and I also suffer from various others conditions, Fybromyalgia, Myalgic encephalomyelitis, Raynauds, Hypermobility, severe bile acid malabsorbtion and under investigation with neurology problems. I struggle daily without my desperate need of iron and my B12 levels keep drastically dropping yet all my bloods say I am ok (other than my iron). I cant take it orally due to severe discomfort from my significant entrocele so I am just left struggling every single day 😢

Have you taken anything to stop your periods?

I was anaemic for years. Only thing that cured it was having a mirena put in that stopped my periods. Within 8 months my iron levels were normal. It was completely down to my periods.

Basically your haemoglobin needs to go down to meet the NHS requirements. If you are still losing iron, eventually your ferritin will be even lower and your body will start using up your haemoglobin, then you will get under the threshold. But it won't be fun.

Assume you have tried iron bisglycinate, taken with orange juice and not with other food? I can't tolerate normal iron supplements either, but iron bisglycinate is fine.

I believe it can cause heart problems? I didn’t really probe as I really wasn’t well so just rocked up a few days later to get it done (that was the first time about ten years ago). I’ve had three since. The GP just rings the team at the hospital and they book me an appointment now. I hope you get it sorted soon, it does make a real difference.

PS I was told it’s about £500 to have one privately but not sure if that’s the current figure as that was a few years ago.

I didn't give any advise, as such. What little I gave was in relation to iron tablet side affects. And I didn't mention the opening posters GP.

I'm not convinced you intended to quote me.

If you have heavy periods ask for a gynae referral into why & you may be able to get an infusion that way as you’ll be under a service that can sort the infusion for you & not GP.

I have iron infusions but my ferritin goes down to three, my Hb hovers between 77&97 and I’m extremely symptomatic when the next one is due. I’ve tried a lot of supplements and all the iron tablets and liquid have made me vomit. The only ones o can take aren’t enough of a therapeutic dose.

my first one was done as an emergency and then they booked them regularly so Ive not has to join a queue!

they did try everything to stop my periods first, I had fibroids removed a few weeks ago so I’m hoping that will sort me out.

honestly though, the infusion isn’t the most fun either, but really did the job.

West Mids here - dd was phoned at work by our GP and told to go to hospital for one asap.

must vary from region to region

being a very stubborn ND adult ‘child’ naturally she didn’t 🙄 but following a collapse on the football pitch mid game that weekend she is now taking her sodding iron tablets

I also have very low Serum Ferritin and borderline haemoglobin, I found the iron pills too unpleasant, so my GP suggested Spatone liquid iron supplements, which I find much more tolerable (they taste of apple, no digestion issues).

I did go on the pill, to slow the flow.

I'll know next month when I'm retested whether it's worked. But if I had to guess, I'd say it has as I'm feeling notably less tired.

It's not up to the GP

It's the hospital.

They just reject the referral if the blood level isn't low enough.please don't follow this advice.

It will only make you feel.worse and possibly cause long term health issues.

And if you do bleed you'll become more anaemic and tired with no guarantee of an iron infusion.

I have them regularly - every 4 months or so. I dunno how.. I go get my bloods done at my GP, he rings me outraged and tells me to present myself at the outpatients at the hospital a day or two later.

I’m in NI. I had no idea it was this difficult for the rest of you. So sorry. It is one of the worst feelings in the world.

My teens ferritin was 13 so just in the range but the NHS range is seen as conservative these days. I haven’t managed to get any iron supplements into her but she has taken to eating lots of steak and in 4 months ferritin has gone up to 38.

Probably diet/supplements aren’t good enough for your levels but I did buy some Spatone which is iron rich Welsh water which is meant to be easier on your stomach. Also not drinking milk with any iron rich food as it stops absorption, I think Vit C aids it.

My absolute idiot sexist pig GP told me it was in my head. Ferritin was in single digits and stress causes that apparently.

It's not up to the GP

It's the hospital.

They just reject the referral if the blood level isn't low enough.

They won't do it.

Unless your blood levels are dangerously low.
So it doesn't depends on the ferritin level but rather if you are anaemic or not.

Things you can try are.

Trying the iron syrup instead.

Better with this.

Cos even if they say take 10mls twice a day.

It's better to take some rather than none.

So even if you can take 2mls a day it's better than nothing.

Other things to try would be spatone- a little expensive. Or mutivits that contain iron. The iron content is much lower in those so less likely to cause issues.

As well as iron rich foods.

If you find the answer let me know!
Had to pay privately and put it on my credit card.
I feel a little better but not like the miracle cure I was hoping for. Slept for 14 hours last night and still feeling tired 😩

I have gone through the same thing very recently. My iron was 3 but heamaglobin was ok. The doctor put me forward to have an infusion on the NHS but it was refused. I have part of my bowel missing so we know why my iron levels are low. The GP said they will only give an infusion if both levels are low. I have taken every kind of iron tablet. Currently on Ferrous Maltol.

So on Feb 1st I bit the bullet and paid for a private infusion. I just had to, my levels were on the floor and I could barely function.

What about this? https://luckyironlife.com/collections/lucky-iron-fish

If you can afford it, private was under a grand. I needed consultant appointment (£250ish), blood tests (I think £80 or so), and infusion itself was only £300 or so. That was a Nuffield.

Just to be clear, what I'm about to say is say is not all serious, the bit about iron supplements is.

You could try getting a stomach ulcer and waiting for it to bleed. I came out of hospital, after this happened to me, and I had both a blood transfusion and an iron infusion. Cannot say they made me feel any better.

I'm now on iron tablets, and I understand to a certain point, what you say about taking them. . I had stomach cramps and a big reduction in my appetite. I tried taking them with orange juice and the cramps disappeared, but may be it was just my body getting used to them.

My appetite is still vanishingly small and I've been advised to eat for calorie input, and not concern myself with healthy eating for the time being. Treating that as excuse to have ice cream for breakfast 😁