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

[SomeoneSpesh]

Last time I had my bloods done, my ferritin levels were 4, but haemoglobin was borderline.

The GP prescribed me iron and put me on the contraceptive pill to stop my periods. Please don’t judge me, but I didn’t go on the pill because I was considering having another child. I don’t think that’s going to happen now.

I have been on every type of iron known to man, and despite changing dosage, timings etc etc, I absolutely cannot tolerate it. It makes me feel so horrendously sick. I can’t cope. Especially not on top of all the symptoms I’m already trying to deal with. I am completely exhausted and worn out.

I have been refused an iron infusion, and can’t afford it privately. I know that this would be life changing for me. I feel so drained that even walking is strenuous for me.

Is there anything I can do? I appreciate I didn’t do the right thing with not taking the pill, but I just need to sort this. I am really, really suffering. 😢

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.

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 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.

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 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.

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 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.

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.

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.

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.

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 been tested for pernicious anaemia?

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

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.

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.

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.

OP i feel so sorry for you! Im 25 weeks pregnant my ferritin was 14 and I was so exhausted I couldnt even do washing up. I couldnt function and I was getting really depressed. I had been on iron tablets for 6 months with little improvement
Ended up in hospital with palpitations and shortness of breath and still was told no. I tried to argue it saying im very symptomatic and suffering and its going to get worse as I get more pregnant. I was still told no. I was told no because my HB was ok. But I couldnt understand as I was suffering and felt like iron tablets weren't working.

In end I found a clinic that did it for £300 private. I paid it and im glad I did. 2-3 weeks on im sooo much better and my energy levels have improved.

I got.my B12 checked which was a little low and thankfully GP agreed to give me injections which I think has helped too.

Just to add what im doing now to aid absorption - these things really impact absorption.

• taking with orange juice
• not having tea 1 hr before or 1 hrs after
• not having any calcium before or after

-I have my breakfast and wait 1-2 hrs then take it then wont eat for 1 hrs after

Under the NICE guidelines you are entitled to appropriate healthcare and this means feeding the cause of the issue.
There for your GP has a duty of care to make and follow up any medical procedures to make sure you have proper treatment.
look it up and spout it to your GP or make a complaint to your surgery.
low levels of iron can cause many issues,
firstly thyroid problems,
which can bring about mental health & other related illnesses .

I have had a few. The first one was with a ferritin of 4 and a hb that was only marginally low. My GP referred me to the iron service and they accepted me.

I am now under a haematology team who aim to keep my ferritin above 100!

The lack of nhs understanding of how unwell a low ferritin can make you feel is astounding. I thought I was developing dementia, depression, lung and heart issues! I had the most severe pains in my legs, all my hair was falling out. I could barely stay awake or concentrate on anything.

After infusions I was back to normal!

I do now take the pill continuously to avoid bleeding and getting back in that state.

I was referred by my GP as my levels were dangerously low with severe anemia and almost at the point of blood transfusion. I was advised they aren't given out all that often. I do have IBD with blood loss so was already under the care of gastro.

Could you try spatone? It is meant to be gentler? I currently take a supermarket multivitamin with iron just for a boost.

Pernicious anaemia here, I have regular infusions as I was already under haematology from when I was pregnant, and then had a massive PPH. My ferritin dropped to 3 and I saw my GP and said “I’m dying.” He sent me back to urgent care and they did an infusion there and then. (I had helpfully fainted twice by this point.)

The infusions and giant doses of B12 have helped and I’m like a new woman the week after it’s done. I have no side effects and generally sleep through it. There’s a weird taste of railings afterwards but that’s it. Keep pushing.

@FakeTwix that's exactly it!! I was crying so much outside the GP surgery after I got told that ferritin level wasn't that bad and that it was in my head that a lovely random stranger came up to offer me tissues.

I don't go back anymore. I don't want hysterical hypochondria on my notes.

I would take a two pronged approach: getting iron in by whatever route necessary (I was told once every other day was fine for an iron tablet if accompanied by vitamin C and avoiding caffeine either side), and reducing blood loss.

I would ask for a FIT test (stool sample) to check you’re not losing blood through a gastro route, a blood test for coeliac disease, and a referral to gynaecology to check the cause of your heavy periods.

If you’re trying to conceive, I would get some advice about whether you can try tranexamic acid to reduce blood loss when you actually have your period. This would also be an option if you’re not trying to conceive but don’t tolerate hormonal contraception.

I hate to say this but I would consider taking your DH/DP to your next GP appointment to reinforce how unwell you’re feeling and the impact it’s having on your life. I would also find the NICE guidelines for your area to see whether your GP and hospital are following them. You must be feeling terrible. I felt awful with a ferritin level of 13.

I requested to be referred by my GP for one because even though my haemoglobin is the lower end of the normal range my serum ferritin has been between 6-10 for years. I am always tired even after waking up, regularly nap during the day, have brittle nails, hair is falling out in clumps, breathless after walking up stairs and frequently have heart palpitations.

I also mentioned that I can’t tolerate oral iron as it causes nausea and constipation.

I managed to get referred to haematology who called me a week later to book me in for the following week. Originally, I was going to go private but that would have cost £600.

There's a iron supplement drug using ferrous maltol called Feraccru that I used to be prescribed, it's definitely worth a try @SomeoneSpesh if your GP will let you have it (it's expensive). It worked really well for me for years when I couldn't tolerate other forms of iron. Until my Crohn's Disease got worse and I couldn't tolerate that anymore either. I had an infusion last autumn and it's worked really well for me. I was so tired before, I really couldn't do my job, and I'm an office worker so it's not physically taxing!