Extremely low ferritin, no transfusion accepted. What else can I do?

God this isn’t filling me with hope…. Mine was 15 a year ago and HB 120. Sent away with nothing. No advice.

I am having another blood test tomorrow because I cannot live like this. The feeling of being utterly exhausted and drained from the moment I wake up is debilitating.

I also had a look on the NICE guidelines and shall be pushing for something as I seriously cannot live a life feeling the way I currently do.

As others have said take vitamin C , this is for non-haem plat based iron needed to change from ferric to ferrous so it can be absorbed. Avoid not only coffee but tea for an hour either side of meals and supplements. Don't take at the same time as a calcium supplement or calcium rich foods as this can bind to iron and prevent absorption. Spinach is good but also contains oxalic acid which can bind to minerals in the gut and phytic acid does the same found in dietary fibre, nuts, seeds, beans/legumes and grains.

Mine was 4!!!!

HB was acceptable. I was told of Hb went low then I’d have a transfusion but not with my ferritin alone.

I went more drastic and had a hysterectomy 🤣

And as PP have said take on an empty stomach with Vit C. There is no need to take more than once a day and if you’re struggling with side effects every other day is almost as good.

I’m an anaesthetist and we are constantly fighting this battle in the pre-op clinic. I ask the GP to practice iron as the ferritin is low often with a borderline haemoglobin and get told it’s in ‘normal range’. Well technically yes but I’d like it higher to provide some reserve for surgery. Or my other favourite - they’ve got heavy periods which is why they’re anaemic. Doesn’t mean they won’t feel better if we try and replace the iron loss though.

Oral iron is cheap as chips so I really don’t understand the reluctance to prescribe and prescribe properly. It will work but does take some time.

Mine have been at 2 for about a year now. My iron levels are “critical” but the specialists won’t do anything. It’s a joke.

What strength supplements are you taking? I sometimes see people thinking that things like spatone will help but it needs to be stronger than that. I take 305mg of ferrous fumerate a day and it has made a huge difference. I was just admiring all of my baby hairs in the mirror last night where it's growing back thick and healthy.

OP, Floidix with iron is a great tonic.
Gently cook spinach every day, add a little butter and lemon juice for absorption.
Eat red meat and add a little orange juice as a drink with it.
Vitamin C increases absorbtion.
You can make a huge difference yourself if you add iron rich foods daily.

You could do what I did and collapse in the doctor’s waiting room!
I did eventually get it and it was the most miraculous medical intervention I've ever experienced.
Worth paying for if you have to and possibly can, imo.

Mine was 27 so not as low as yours but I had symptoms. I’ve been taking iron bisglycinate and my levels have been rising about 4 points a month I’m now at 42 so better. I bought them myself off Amazon. The key thing for me was increasing my progesterone to reduce bleeding as I’d been having long periods and initially the iron tablets made no difference until i got that sorted.

Mine was 11 and they wouldn't consider it either. There will be oral iron that suits you though. Try Boots own brand gentle iron, it's really good.

Mine was 6 when I was offered a transfusion, I think the cut off is 10 for the hospital. I know it’s expensive but if you can afford to go private I would, I have never felt so bad as I did pre transfusion!

They won't do anything I'm afraid. My ferratin is 14 (up from 11 woo hoo!). Like others have said you have to persevere with the tablets, take them properly and look holistically at everything. I'm in bed by 9 latest most nights for example. See if you can make small improvements everywhere else and hopefully you will gradually start to feel better.

It's shit. NHS will just keep sending you away with iron tablets and that's literally all they will do. Ive not heard very good things about the infusion and saw someone on Instagram who's whole arm has gone black because of it....

Mine was three, I had to have a uterine ablation, it was that or hysterectomy.
I have to take supplements, eat insane amounts of iron rich foods, and I'm now up to 11. No more palpitations, way less of the extreme exhaustion, down to one nap a day.
I feel miles better, but mines always been low, so I don't know how it would feel to be 20+ for example.

It is frustrating isnt it. my ferritin was 2.8 and haemoglobin 114 at the lowest and I felt truely awful. Ferrous sulphate got my ferritin to 24 after 3 months, they gave me another 3 months worth and sent me away. I never found out what caused it, all other bloods were normal, negative fit test, normal periods, normal diet. I can feel the tiredness creeping up on me again so I suspect it's falling again 🙁

It cost me £950 in 2023. My sons got slightly low ferritin at the moment too but going to try giving him spatone as that helped before

How's your diet? I had ferritin of 7. My symptoms improved massively when I improved my lifestyle. Part of that was eating more regularly.

Going gluten free was the only thing that sorted my ferritin levels, iron supplements did nothing (and i was on them for years prior)

Mine was 9 and no transfusion
Important to treat the cause and take more iron

It's about £800 at the Iron clinic. I think it's a bit more at Spire - maybe £900 - but broadly in that area.

I have posted on loads of these threads about this. It makes me so angry that they don’t take it seriously!

I read a study that said if you’re presenting with symptoms of iron deficiency without anaemia that you should be supplemented until your ferritin levels are up to 75-100.
Mine was at 34, much higher than all of yours and I still felt like shit so god only knows how you all must be feeling. I took ferrous sulfate, you can get them without a prescription, and it took about a year to get me up to 75. But I felt much better within about two weeks. Most normal iron supplements aren’t strong enough and won’t touch the sides, likewise with changing your diet.

They won't do anything.
As with other pp, mine was 11, I was attending for those symptoms and they still won't.

Look for iron supplements with better bio-availability (ferrous fumarate or bisglycinate or gluconate rather than sulphate)

And follow the other advice about avoiding caffeine and taking with vitamin C for better absorption.

After about 18mths it got up to 50, so I've now doubled the dose to try to get it up to what NICE considers reasonable, rather than the abnormally low levels that the NHS use to try to minimise treatment costs.

Mine have been between 1.8 and 2 over the last year and and half, it’s not being taken seriously at all, even though all my other iron related markers are very low too, I struggle with restless legs at the best of times, it’s so much more severe at the moment and I can’t sleep.

Last gp I begged for help offered me antidepressants to help and said they feel like I present as anxious, well yeah considering anxiety is a symptom of anemia, and my iron has left the bastard building, my hair and teeth are falling out, I look like shit and feel shit, I have physical disabilities that become extremely hard to manage when the anemia is affecting my ability to sleep and concentrate and function. Of course I’m showing signs of anxiety. I feel a lot of the time just basic thinking feels like a lead weight in my head sometimes

Currently I have to try three months of triple the dose I’ve been taking for the last year even though my all my iron markers are very low, they’re still not budging when it comes to anything other than antidepressants and more iron pills.

Mine dropped to 2, at it's lowest, an iron infusion got it back up to 10 and then classed 'as fine and crack on'. I always run on low/borderline.

Mine was 5 and I was advised to have the coil because it’s due to heavy periods.on the iron tablets and following all advice - 8 months later and I’m at…15. Which is perfectly fine apparently. Except I have all the same issues but it’s “not clinically relevant” as I don’t meet the guidelines so just keep on with the tablets. It’s so frustrating.