Anyone managed to get iron infusions on the NHS, and if so would you mind sharing how?

[AnnaBelIa]

I am struggling to get my iron up on oral supplements, which are also causing side effects, but my GP shut down my suggestion for an infusion.

I have read varied information from people who got infusions on the NHS and wondering if anyone who has managed to get infusions would mind sharing their situation and how they managed to get them?

My concern is supplements are already hard enough to tolerate, and when I am pregnant it will be harder. Without supplements my ferritin is 11.

Thanks for the help.

Are you anaemic? That will be the key question.

How do you take your supplements? Are you taking them on an empty stomach and not eating for an hour or two afterwards?

DM got iron infusions on the NHS, but she was an 80 year old cancer patient.

No my vital surgery was delayed by 2 years because of my anaemia. I was in agony day and night. GP refused to refer me.
In the and I went for a private iron infusion at the local iron clinic. It cost £800. I just stuck it on the credit card.
The NHS have draconian boundaries for iron transfusions they will not cross.
Best thing I ever did.
You can get a list of iron clinics from AI.

If I do not take tablets, yes, anaemic. However to take the tablets/liquid is causing me severe stomach issues that I definitely cannot handle long-term. I think my GP is of the attitude that as I have suffered with the tablets for months and got my ferritin levels into 'normal' range, I am therefore am OK to take them forever.

I am unable to take them on empty stomach (stomach pain for days afterwards whenever I try), so I just take it with dry toast and nothing else. It is causing me a lot of gastro issues, still. I have tried 3 different supplements (ferrous sulphate, and fumarate tablet and liquid).

The stomach problems they cause mean I frequently have to stop and start, so that my stomach issues can recover. I have tried alternating day-on-day-off also, and still a problem.

When I get pregnant I do not think I will be able to suffer through it like I am now. In fact I do not think I can last more than another month of this.

Have you tried having them before bed ? That worked for me

Thanks, may I ask how long the infusion lasted before your levels dropped, and you needed another one? What was your GPs reason for refusing to refer?

Thanks for the help.

I have yes . I’m anemic with bowel issues and I have no issues getting them

I can't take iron pills I have severe gastritis. You can get iron pills that completely bypass the stomach.
Sucrosomial iron.
Iron bisglycinate (chelated iron).
There is also an oral spray that is absorbed by the mucosal lining of the mouth.
Ask your pharmacist.

Usually if you cannot tolerate oral iron (there are three main preparations have you tried them all?) you should be offered one.
In my case oral iron caused anal tears which took months to heal. My ferritin was 3 though so I basically had none maybe that made a difference 😂

One time I lay down to take a nap after taking them and they destroyed my stomach, so I don't think this will work for me due to the stomach irritation they give me. I have to stay upright or they basically cause me even worse stomach issues than they do already.

after 6 years of asking and being denied I was on my knees with ferritin level 6. I asked for a female gp and cried down the phone. My gp would do blood tests showing anaemia and add the comment “as is normal for this patient”. wtf?! Turns out that my blood loss during C-section for twins was too much to ever recover from naturally. I got the infusion in May this year… twins are 15 years old! The iron clinic assessed me and called me in for an urgent infusion 2 days later! Ferritin now 158.

See a different GP, they done see why you wouldn't meet the criteria for IV if you are anemic.

This is my first time hearing of those ... wow ... I am SO confused why my GP didn't recommend these to me when I have been complaining for months!! Insane. Thank you so much, I will definitely look into those.

My iron wasn't "low enough" to qualify and wasnt high enough for surgery. It was a vicious circle. I lay in bed for a year and a half unable to move and in agony.
My infusion lasted around a year. I did loads of research and referred myself to gastoenterology via a@e who did a gastroscopy without a GP referral and found my gastric band had slipped causing severe gastritis which stops iron being absorbed so they are removing the gastric band next month. Its essential to find out the cause of your problem but nobody will refer you. Its hugely annoying.

GPs dont know about them. This is why you need a proper referral yet they wont refer you. My GP never heard of them.

Also liquid iron is by far gentler on the stomach. Try spatone. Its iron rich spring water from Wales mixed with vitamin C which you need to absorb iron
I did the initial iron transfusion privately then kept it topped up with spatone. You can get a big box from Amazon. Dont drink tea, coffee or milk for 2 hours before or after as they destroy iron. I have mine just before I go to bed.

Not all areas can prescribe it but ferric maltol is also one to try (ferracru), where I live if you’ve tried 3 other types of iron unsuccessfully you can have this one, it is absolutely fine for my stomach and I have crohns. I have previously had iron infusions but always organised by the Gastro hospital team and only when both iron and ferritin very low.

It seems to be quite random. I managed to get an NHS one once and still not totally sure why. The other times I've paid privately. For me it lasts about a year.

The gp (nhs) doesnt ever recommend ferrous bisglycinate as on the nhs they only offer what is in BNF; ferrous sulphate, ferrous fumarate and another one, cant remember. They know these are cost effective, and proven to be clinically effective and lets be honest, our "comfort or pain" in taking them isnt on their list of things to consider.

The ferrous bisglycinate im taking is a food supplement, not a medication. So it hasnt been proven or tested in the same way as a drug. I buy it myself from boots , gentle iron. I take 40 mg every other day with vitamin c and plenty of water, sometimes with a clementine too. No tea coffee or other food for 2 hours. There are too many foods interfering with iron absorption.

Only taking every other day because once you take iron hepcidin levels rise for 24 hours and hinder absorption: you increase the amount absorbed by leaving a whole day gap.

Ferrous sulphate and fumarate burn my stomach ,cause me pain and i end up with diarrhoea which affects my ability to take more. I havent had the same issues with ferrous bisglycinate.

I looked all this up. It might help you.
Out of the 65 mg of elemental iron contained in a single 200 mg ferrous sulphate tablet, your body will typically absorb approximately 6.5 mg to 13 mg. 1]
The body absorbs roughly 10% to 20% of the elemental iron from standard oral supplements. The remaining 80% to 90% goes unabsorbed and continues down through your digestive tract, which is what typically triggers common side effects like dark stools or constipation. A similar amount of absorption applies to ferrous fumarate.

While standard ferrous sulphate/fumarate has an absorption efficiency of about 10% to 20%, ferrous bisglycinate has a much higher fractional absorption rate, typically ranging from 30% to 46% in individuals with low iron stores. So from 40 mg of ferrous bisglycinate, you could absorb 12 mg to 18.5 mg of elemental iron.

Gps and even pharmacists ive had involvement with, dont tend to know these figures to be able to give guidance . Its women, who' ve had iron problems for years, that have a vested interest in knowing and learning this.

Levels through the floor . Tried to sort with diet and supplementation with gp but to no avail.

tried all forms of iron but affected my stomach giving me endless diarrhoea- totally unable to tolerate.

my consultant endocrinologist immediately ordered infusions when saw my levels just dropping which frankly changed my life.

You should be able to look up the guidance for IV infusions in your area.

In ours it is based on criteria - your Hb amd your ferritin - and your previous attempts to tolerate iron.

My hb was 104 and my Ferritin was 3 and I got mine on the nhs no issue.

I managed to get one on the NHS many years ago but only after a very kind gastroenterologist took pity on me after my GP had fobbed me off with the word ‘tough’ when I said I couldn’t tolerate any of the iron tablets he’d prescribed. My ferritin was 4 at the time and I was barely functioning.

I also had an infusion via my private healthcare in February when my ferritin was 5 and the GP’s only advice was to increase iron rich foods in my diet.

I did discover Three Arrows heme iron earlier this year and have been taking those three or four times a week to keep my levels topped up. You can take them any time of the day and no restrictions around what you can eat or drink at the same time. So far, I’ve not had any gastric issues with them.

Better you iron spray was the only thing that increased my ferritin. From 9 to 67 but it took a year of consistent use.

No side effects either https://www.boots.com/betteryou-iron-10-daily-oral-spray-25ml-10274320

Ferritin 3, unable to absorb oral iron due to gastric surgery. Received two infusions and my levels went up to 150.