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.

ICB website.

Stick on iron patches are offered online but dont bother with those. They are a scam. You cant absorb iron through your skin.

I use "gentle iron" and can tolerate that okay without gastro issues.

I hate how hard it is to get an iron infusion in the UK, the effects of anaemia are so debilitating. I’m ‘lucky’ in that I have another chronic condition which enables me to get them easily, but without the other condition I probably wouldn’t be anaemic.

Have you tried spatone iron supplements? I used these in both pregnancies when I couldn't tolerate the tablets I'd been prescribed. A double dose every day lifted my levels from borderline anemic to healthy end of the normal range within a couple of weeks.

Ask for iron injection as an alternative. This was freely given to my relative who had similar stomach issues

i was referred for one in February, by my gastro consultant as I can’t tolerate oral iron due to my existing stomach issues. My ferritin is 6 and I’m on my knees. Still waiting for the infusion, haematology request regular blood tests to ensure I still need it.
if I’ve not had it by January I’m going private.

I recommnded spatone earlier they are really good.

I think the issue is the NHS considered iron infusions as a last resort rather than preventative - you are meant to nearly die taking supplements that have little or no effect and end up in hospital to THEN be given the transfusion. If you are walking and talking you are not nearly-dead enough.

I cannot stomach iron tablets but Spatone is a lifesaver. Take two sachets in a glass of orange juice and after a couple of days my energy levels are up. I usually do this after my period.

My ferritin has been at 13 for a few years which i only realised was low recently. I also have gastritis. Gp said I wouldn't get an infusion on the NHS so I'm another one who has paid and I've received 2 IVs so far at £140 a time over the course of a month. Getting a blood test later this week to assess the impact.
Meanwhile I'm taking boots gentle iron before bed 2 hours after eating with a fizzy vit c tablet - I double up because my gp said it was a low dose - and it doesn't seem to make the gastritis worse (but i'm on lansoprazole too). Like a pp I take it on alternate days which is meant to be better for absorption. Under my doctor's recommendation I take lactoferrin on the other days.

Where did you go the get the infusions?

With a lot of difficulty. My ferritin levels had fallen to 3 and had been that way for at least 5 years (probably longer). I couldn't tolerate iron supplements so my GP just left me to it. The only way I was able to get infusions was because I was awaiting a gynae op and when the bloods came back afte the pre-op appointment they said they couldn't go through with the surgery until I had the infusions.

I believe it's due to iron infusions being very expensive so the NHS would rather you live like a zombie for years instead.

Yes I had two, first when I started cancer treatment and then again two years later. But both times the infusion caused my phosphate levels to drop to zero (not immediately, a few days later). That's a medical emergency so I was rushed back to hospital for phosphate infusions and had ongoing problems for months afterwards. This is not an uncommon reaction, especially if your vitamin d levels are low, but one that many doctors are woefully unaware of. The second time they only checked my levels because I insisted based on what had happened before.

I also can't tolerate iron tablets but I'm determined never to have another infusion so I've been using an oral spray (by Better You, you can easily get it in supermarkets & pharmacies). I had my iron tested recently and it's good, so the spray must be working. It's absorbed directly so you don't get the digestive issues.

My rheumatologist refers me when my iron gets low. I did have to have a colonoscopy and gastroscopy to rule everything else out. I had also tried every iron supplement known to the haematology team. I don't have any issues getting them now

I've been on oral supplements for almost 7 years and my Ferritin has never been above 12. No GP or HCP has ever suggested an iron infusion or questioned why after 7 years on Iron supplement my levels are still so low.

Spatone take a long time to work, my daughter got a Iron transfusion done privately and it worked well, the Dr said they are commonly given in Europe apparently but not on the NHS
You could contact private hospitals near you for advice, sorry I edited it to include that I agree with other posters that the higher cost for NHS means they would rather you carry on feeling unwell and use cheaper methods that take ages than use an IV infusion and get you better quicker!

There are different types of IV infusions. The low phosphate risk can be mitigated by using the other type. Ferinject is first line of treatment, but if you get the low phosphate reaction they can do the other.

There is ongoing research being done into maternal anemia and heightened autism/ADHD risk.
The NHS is shit about maternal preventative care.

Ferritin dropped to 3, but I hadn’t seen the blood results and went to my GP saying I felt awful and like I’d die. He went through my results and then exploded when he saw that, and apologised for missing it. I was sent directly to ambulatory care and given an infusion that day. I’d helpfully collapsed in the waiting area so there was no worries about being not symptomatic.

I also had a giant PPH which I think is what kicked things off.

The NHS is shit for woman’s heath in general I think

I was severely anaemic, almost bordering on blood transfusion levels. A result of bleeding via bowel disease. It was my GP that arranged it.
This was almost 2 years ago, haven't had another one since but was on iron tablets whilst pregnant.

My friend had an infusion whilst pregnant, they told her this was quite common.

I really think the NHS needs to privatise things like iron infusions and even scans. Our hospital has an CT unit in a mobile hut outside and due to paperwork issues I sat waiting in it for 45 mins before being told I couldn't use it. No one else came in and they said they hadn't seen anyone that day yet (11.30am). I was sent away and had to be re-booked in which cost a lot in admin while the machine was sitting empty. I would happily have paid £200 for the CT as I would happily pay £300 for an iron infusion. Women paying outside to private healthcare or IV clinics in cities are, IMO taking money away from NHS that most of us would be happy to give it.

I said that to my haematology consult about the Ferinject/phosphate. His response 'ah, you'll be fine 🤷‍♀️'. I had too many other issues at the time to argue but lesson learned. Hopefully this will help others on this thread.

So interesting! Our maternity ward closed locally and there was turmoil before DD was born - I never saw the same midwife and don't recall ever having my bloods taken other than the initial pg check when they had to fax over my blood results just to prove they needed to prescribe me folate!

DD is Autistic and she and I have always been pail, faint and cold with low iron levels they won't do anything about other than say to take tablets. A couple of years ago I discovered I have pernicious anemia, which my mum also had but they told me it wasn't genetic and refused to test for it. Am now on the injections and feel half normal but still pale and dizzy and cold! I wouldn't be amazed if there was a link to anemia coupled with that as my mum was most definitely autistic (had ability to play music by ear, spoke 8 languages fluently, etc). I know genetics is loudly the most intrinsic but these other issues must play a part.

More recent advice recommends taking iron suplllements every other day, it has been found more iron is absorbed by taking every other day. I’ve found it more and more difficult to get infusions and it’s frustrating I have to wait until I have very low ferritin before I am eligible again.