To not want to feel like this anymore??? Anyone with medical knowledge or knowledge of iron deficiency??

I take ferrous fumarate with a meal to feel less sick. I was at 7, now over 30, I found I was feeling better within days of starting the supplements.

You need to get hold of heme iron. It's a supplement based on animals products and means the iron is much more bioavailable so you absorb more. It also doesn't cause the digestive issues of other iron supplements. I was able to buy it from Amazon under brand name Optifer, but unfortunately not anymore. I joined the iron protocol on Facebook and have since bought it from the US brand name Three arrows. One pill is 20mg of heme iron and you can take multiple a day.

My OH kept suggesting iron infusions for me and I was very wary because of the risk of anaphylaxis. The idea of getting it fixed quickly nearly made me do it though!

Pharmacist here and also had extremely low ferritin for years before being discovered.

My experience was that ferrous fumarate was fine for me, no side effects other than black stool (TMI!). Couldn’t tolerate ferrous sulphate in the past.

And, although it takes months to fully replace iron stores - anecdotally I felt better in 5 days. Walking my usual route to work, turned a corner that then went up a steep hill - my legs just…. did it. I nearly cried as I hadn’t even realised I had been struggling with that hill, or any other exercise. I was just exhausted all the time.

if you can’t tolerate the iron tablets - spatone is a legitimate alternative, despite it looking like it’s got a lower elemental iron content.

No it is a major warning in the BNF for most of the preps. It was 20yrs ago and the infusion I had was an older type that was licensed for use in pregnancy. But there is a risk so if you do have one done privately make sure you ask if they are equipped to deal with it.
It does work well. My Ferritin was around 4 and my haemoglobin iron was 83. Six weeks later I looked like I’d spent a month in the Caribbean. I’d had chronic anaemia for so long due to endometriosis that I was permanently porcelain white complexion.
Since having it and then having Mirena coli fitted my iron levels have remained healthy since then.

@DearRubyPoet Do you know the root cause of your anaemia?

Mine was very heavy periods. My ferritin was 4 a year ago. It's now 125.

I had a mirena coil fitted to stop my periods, I've had two infusions (my GP would only give them when my ferritin dropped to 4), I've also been taking a very high dose vitamin D. When I was taking ferrous fumerate I was making sure to take it away from caffeine, dairy etc as other PP have said. I liked to take mine with a sachet of Urgent-C.

My ferritin hadn't been higher than 25 since 2014. I had a PPH when I had my first baby and never really recovered until now. The ridiculously heavy periods where themselves a horrible circular symptom AND cause of the anaemia!

I had one years ago and it was amazing, but told that you have to wait three years between , due to the risk of anaphylactic shock. I don't absorb them well and now take them every other day in the afternoon with lots of orange juice and a vitamin c tablet , they are very slowly increasing, but the tiredness is still there and the brain fog. I was going to ask the other day at the doctors but mine have started to creep up so I know I won't be eligible despite feeling shattered an hour after waking up. I've also got low vit d that's linked and on a prescription vit d dose.

Can you afford a private iron infusion? If so just do it. I had one earlier this year, under supervision yes, but hardly with a full resuscitation team on standby!

My HB was 83 and ferritin was 5. Felt atrocious. I really feel for anyone struggling with this it's just awful. I was fobbed off with a packet of pills too before I went privately. Good luck x

Currently taking iron tablets because I had a ferratin level of 7. Didn't ask for the other levels (went to the doctor thinking I was either anaemic or my thyroxine dose needed to be reviewed).
Have they looked into why the iron levels are so low?

Based on what I had said (and previous appointments) the doctor did full bloods. The results showed up the low iron levels, but also showed up that the celiac antibodies were raised, so that has been looked into. Tests were inconclusive so being redone in 6 months.

Years ago I was given iron tablets because my ferratin level was 4.5. I Put how I was feeling down to having only been diagnosed with underactive thyroid a few months before so correct dose not properly established. Actually went to the doctor for a totally unrelated issue- saw a GP I hadn't seen before, who thought i looked pale and asked to check my iron levels.

I found taking mine at bedtime helped with side effects especially feeling sick

This is actually how iron supplements should be prescribed now following a guidance change. Once, every other day is best practice.

Op have you been tested for coeliacs?
Anaemia is a common symptom and in some people the only one!
I was anaemic for over 20 years, whatever I tried I just couldn't get my levels up.
Within weeks of my diagnosis and going gluten free, they shot up and have stayed that way permanently.

OP you need to look at the guidelines for your NHS region. They are different everywhere, which is bloody ridiculous. I had to really force the point that I don't tolerate the tablets & they just take too damn long to have an effect from such a low starting point.

I also pressed the point that it was getting hard to do things with feeling dizzy & unstable when I turned, that I'd nearly cut my finger off at work etc etc.

It's absolute bullshit how hard it is to get an infusion & we're just left living with such low iron & stores making us feel so ill.

I think they have changed the formulation in recent years the one they use now is less likely to cause anaphylaxis. I remember the nurse who set up my IV telling me about it.

@Runskiyoga wrote
I am not an expert but I have read some studies that suggested that taking the iron supplement every other day actually increased absorption and reduced side effects.

My GP said that, too.

I was given an iron infusion a few months ago. Apparently they only do them for inpatients where I am (Scotland) so my hb being 77 and ferritin 2 was not low enough. I got worse a few days later and my hb of 68 and ferritin still on 2 got me a hospital bed as unsafe. I was given a unit of blood first. I actually felt great a week afterward both infusions but I think I’ve burned through it all. Still waiting on results of tests to decide what’s causing anaemia.

I had an iron infusion a few months ago. A blood test result showed low haemoglobin and ferritin of 2 - I had a call from 111 to say to go to a&e as I might need a blood transfusion. I didn't as the haemoglobin had gone up but they did give me iron. I just sat in a chair, got an IV in and it took half an hour to drip through. Sounds like they're a lot more cautious in pregnancy @Angrymum22 !
I wonder if 111 might be worth a try? I'm not recommending going to a&e but you might meet the criteria on the 111 script to get referred somewhere if the GP isn't helping? It sounds like you're really struggling I hope you get sorted out 💐

I have iron infusions every six months or so- my lowest drop for ferritin was 2 but my last was 6. I had an infusion last week for one. I can't tolerate iron tablets, they make me very sick, the GP has been very accepting of this and the anemia clinic.

Just in the process of trying to find out why my iron drops so quickly.

I had two infusions whilst pregnant as my levels were similar to yours. It most definitely wasn't done in the same manner as the poster above.

I know you shouldn't have to, but could you pay to go private? Or do you have private healthcare where you could just pay the excess? I hope you get it sorted as I know how debilitating it is.

I wonder if these precautions may have been because you were pregnant?
I know people who have had private infusions and they have never been warned of such extreme side affects.

Iron infusions are actually quite risky because there is a risk of anaphylaxis within the first few minutes. They have to be done with an anaesthetics team on hand in case you have a reaction. I had to have one when pregnant. It was done over two sessions and each session was done over several hours.
They did them on the delivery suite with a full resuscitation team sat outside ready to jump into action. I was quite surprised how serious they were about the risk. But they did do them overnight so I could sleep while it was going on.

First time I've ever posted.... This was me one year ago. I essentially cried to the GP and said I'm so tired and I cannot continue taking the iron and it's not working as my levels weren't increasing but my symptoms were awful, so what was the point. I literally begged if there was anything else and she only then referred me to the haem clinic. I'm now 2 months on from iron infusion and can walk upstairs without getting breathless and generally have so much more energy! Push for it. Tell them it's not working and you can't do it anymore. Good luck xx

I am not an expert but I have read some studies that suggested that taking the iron supplement every other day actually increased absorption and reduced side effects. Maybe google the name of your supplement and every other day to see if it is recommended?
I've just requested test because I have been supplementing since Jan, but a Boots Ferratin test shows me as low. I know nothing about numbers but your symptoms sound awful.

Join the iron protocol on Facebook, it was recommended to me on here and it's been incredibly helpful! I had a lot of the symptoms you describe about 6 months ago and ferritin of 6 and I now take high dose iron (based on the iron protocol) and feel so much better now! I have no idea what my levels are but I can only assume they have improved. I was going to wait a bit longer and then get tested again.

I also made a few lifestyle changes, e.g. only drinking tea in the morning, and having iron tablets in the afternoon, as the tannins in tea reduce absorption. Ditto with lots of dairy, avoiding around when I take my iron.

Think it’s about £700 for a private iron infusion. Clinics offer them if your GP can’t