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

Typo - should have said ‘gastro’ as in ‘gastrointestinal’. Hope that helps.

@NNforthispost Gastronomic - adjective meaning "relating to the practice of cooking or eating good food."
E.g. "the hotel restaurant serves the most exclusive gastronomic delights"

If they have refused because you’re not suffering from anaemia there’s not much they can do.

Have you tried a Lucky Iron Fish and a Spray iron vitamin? Red meat and leafy greens with vitamin C?

@SomeoneSpesh coming back to this thread to say that my iron levels are up and the only change I've made is using the oral spray, so it may be worth a try if you don't get anywhere with an infusion.

Thats the one. I couldnt remember the name. Its an iron rich well in Wales. We have our own iron rich well in Glastonbury. The water is free. Im off there later to get some.

I got an iron infusion on NHS but I was feeling awful. Ferritin was two and hb was 72 ( went down to 69 over a couple of days) I felt like I was drowning when lying down and developed liver pain. I thought it was gallstones tbh.

I needed to have a blood transfusion first to raise hb and then an iron transfusion. They only do them for in patients where I am so you need to be sick enough to be hospitalised. I did get a top up iron infusion a month later.

In my experience as someone who fought tooth and nail (successfully) for an iron infusion when pregnant (ferritin 4) and being a healthcare professional myself, it would help you argue your case to include key phrases like this:

I am finding myself unable to fully care for my child without significant, additional help.

My symptoms of (…) are debilitating and I am now unable to perform normal day to day activities independently such as….

It is now impacting my quality of life and mood.

I am planning to conceive in the next (…) and I am concerned that this will further adversely affect my physical and mental health during that pregnancy, particularly in light of pregnancy further reduces iron stores

I have trialled (…) number of first line options for my deficiency and despite trying numerous ways of taking them, this has not reduced their side effects which I am unable to tolerate.

I have thoroughly researched alternative options including an iron transfusion, and have weighed up the pros and cons including potential risk of transfusion. I have familiarised myself with the process of an iron transfusion and that the nursing staff are highly trained to identify risk of any adverse reactions to the infusion and stop the infusion if necessary. This is a risk I have weighed up and am willing to take as the benefits outweigh the potential small risk.

I am asking for you to treat the person sitting in front of you and not just the figures alone. If you are not willing to offer appropriate alternative treatment I would like you to clearly specify in my medical notes why you are refusing me referral for an iron infusion.

I really hope you get somewhere with this. Perhaps meeting with another GP who may be more sympathetic might help alternatively. I have been there in the trenches of iron deficiency and unless someone else has experienced it, it is hard to understand just how debilitating it is. Good luck x

Im so sorry. I had this dance with my GP last year. Horribly anaemic, waiting for an iron transfusion and not being able to have the operation I needed, hip replacement, until my anaemia was sorted. I was in agony.
I took 3 iron pills a day for over a year and my iron levels did not rise.
In the end out of desperation I put a private transfusion on my credit card.
We have a private iron transfusion unit here at Yeovil hospital. It was £800.
There is a lot you need to know about anaemia for example cereals such as Special K and weetabix have your whole iron for the day in one portion but if you eat them with ordinary milk and drink tea or coffee at the same time you destroy 70% of it.
You need to have it with plant milk and drink tea or coffee at least an hour later. Calcium and tannin prevents iron from being absorbed properly.
If you go onto AI Gemini or the like it will give you an iron rich plan and tell you the best way to absorb your iron.
You can also buy iron rich spring water from chemists. Here in Glastonbury we have Chalice Well an iron rich natural spring and I drink 2 pints a day. Its free from the well tap.
You are better off with liquid iron also ditch the pills.
Ive been anaemic for over 30 years even after my periods stopped. Now Ive got it right under control. Good luck.
My GP didnt help me at all. I had to find all this out myself.

Thank you for posting OP. I have tried to get an iron IV for months and as the GP on the first page said, unless your Haemoglobin is under 100 they don't allow it. Mine is 108 and my MCHC is 315 and I am already taking injections for B12. I can't work as just going out for an hour makes me sleep for most of the afternoon and I have been struggling for 2 years.

Where in the uk are you? There’s an affordable clinic in the north west

Try spatone liquid, you can get it on Amazon . I've been anaemic for years, prescribed iron tablets but can't take for long as I have ulcerative colitis so always been under the advised iron level. Have been taking spatone for a few months and now above the level for the first time. I take a sachet a day and it's really helped.

You will need to help yourself and take the pill to stop the periods for a start.

I'm currently having further tests because I've been identified as having something called myocytic anaemia.

My haemoglobin cells are micro sized and the iron cells can't stick to them.

I believe that's the crux.

Still waiting for definitive answers, having to have a test redone. I've had anaemia on and off since my mid teens. I have very heavy periods (I have endometriosis) and have spent more of my life plant based, or at least not eating red meat. Those have been blamed before, but its by chance a doctor looked at all my tests on one screen together and saw a pattern.

I'd be wondering if you had any iron absorption issues, and whether that affected how you react to the pills.

This paper describes potential causes of iron deficiency without anemia and it has flowcharts which would take you to the point of needing iron infusion if intolerant to all oral preps and all strategies suggested failed. I don't know if a GP would be able to do much with it though or if a hospital would accept a referral. Staffing iron infusions takes a lot of resource as it takes place in a clinic and people have to be watched for potential allergic reaction, so that is space and staff that the system seems unable to afford these days
https://pmc.ncbi.nlm.nih.gov/articles/PMC8002799/ "Iron deficiency without anaemia: a diagnosis that matters"

Have you tried ferric maltol?

Have you tried iron bisglycinate?

Spatone is amazing.

4 sachets of it over 2 days saved me from a blood transfusion after I had an emergency caesarian.

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!

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.

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.

@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.

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.

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.

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.

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 .

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