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

[DearRubyPoet]

I’ve had my blood tests back. I have ferritin of 6, serum iron 5 and haemoglobin of 110.

Symptoms are - unable to focus/concentrate, body aches, a trembling sensation in legs when I lie down and bruising easily. Also, no energy to do any of the things I want to do in life.

Ive been prescribed meds that i have tried before that I really struggle to tolerate, and taking them will take months to offer any improvement, from what I understand.

I just wish I could get an iron infusion. I know they offer them in other countries for levels similar to mine but not on the NHS it seems.

Has anyone else been through this? Im feeling very down about it all.

A pharmacist advised me to take my prescription anaemia meds with a glass of fresh orange juice, the vitamin C in the juice means the iron is absorbed much easier. You won’t have the awful stomach problems (which I had). It works instantly and you’ll be able to take the meds without issues. You should start to feel better within a couple of weeks.
My heart does go out to you as I felt so ill with anemia that I thought I must have a terminal disease!

Thanks @LizzieSiddal, I’ve unfortunately still experienced the discomfort with orange juice, so the doctor has prescribed me some laxatives to take. I just feel like I don’t even have the energy for the effort required to start taking them. To deal with the side effects. I know that sounds ridiculous and I just need to give myself a kick up the backside. Annoying that the threshold in this country to receive the infusions is so extreme. 🙈

Is there a fixed threshold for infusions? Are there options to the local iron protocol as in: can you get an infusion at those levels if you also have XYZ symptoms?. Can you present to the hospital reporting that you collapsed?
I don't know how you could find out, is your GP direct and honest enough to tell you? Could a private GP tell you?
Those levels are shockingly low and in other countries you'd be given an infusion no hesitation.
In my experience it was like winning the lottery!!!!

What meds have you been prescribed? I've been on heavy duty iron tablets and they made me feel queasy for the first few days but then I got used to them.

Meant to say, my bloods were worse than yours. I did score B12 injections but that turned out to be a different cause.

I take folic acid , gentle high dose iron from Holland and Barrett and b12 , slowly my levels are increasing. I also take with orange juice in the morning and don't eat for at least an hour after.
Have you been tested for intrinsic factor antibodies? If you have pernicious anaemia it doesn't matter how many supplements you take your body won't absorb enough

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

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.

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.

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

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.

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.

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 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 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 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.

@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 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.

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.

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.

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

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

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.

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

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.