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

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My ferritin levels are critically low (18) but because my haemoglobin is normal, the doctor has said no sort of transfusion will be accepted as I am not anaemic.

I already take supplements to support my ferritin and they’re clearly not working, but the doctors think that I should just get on with it.

For context, my hair doesn’t grow past my shoulders, I am extremely tired every day, I have lost so much fitness (struggling with breathing) and I have palpitations frequently.

What else can I suggest? Feel at a loss here :(

Are you taking the tablets every other day with vit c and avoiding caffeine/ dairy either side? Very few trusts will allow an infusion currently. Have a look at the iron protocol on fb for ways to get your iron up. The alternative is going privately for an infusion.

Wait, I’m actually fuming. My GP just said

“I am not sure where you got the information from, The lab considers values above 15 as normal“

NICE guidelines and the NHS website state: In all people, a serum ferritin level of less than 30 micrograms/L confirms a diagnosis of iron deficiency. A level of less than 15 indicates absent levels.

I am only just over absent and I’m being told this is normal??!

Mine was 6, I only got tested for a work medicL

I had the same problem and had to spend a fortune on a private infusion. Worth every penny though.

My husbands was the same - 18. The NHS has a range for which <11 is considered low in women and <20 in men. They also didn’t help my husband at all. He has been taking iron liquid (with vit c in it), eating more red meat and I’ve been using an iron fish. He has improved. Try and up the haem iron you ingest. Or you can get a private iron transfusion.

Mine goes up and down from 20 to low 30s and my GP also says that is fine, despite, like you, my hair not growing (in my case not past three or four inches) , chronic exhaustion etc.
I would get a private infusion but I am scared of having an adverse reaction as I’ve heard that is fairly common ?
My GP, when I pointed out that my levels are a bit low, actually said “oh but your levels are always like that, and read out over a decade’s worth of low levels as prove that it was obviously fine. Even though I have been to the GP multiple times with exhaustion and palpitations.

I’ve been going through the same thing and have done a ton of research. I was at 18 in December and then 13 in February.

Don’t drink caffeine. Don’t take anything that interferes with your stomach acid so no ommeprazole/heartburn medication. Take your tablets with pure orange or a vitamin c supplement. Dont take any other vitamins at the same time. I Eat loads more spinach, pumpkin seeds , lentils and nuts. Every single day I take a prescribed 200mg ferrous sulfate and a nutrition geeks iron energy +. I eat liver twice a week( grim bit necessary) and plenty of sardines, mussels/cockles and prawns.

I’ve been doing this since late march on the advice of my NHS specialist and I have noticed definite results. I’m not as cold , at the beginning of the heat wave I was still wearing fleecy pyjamas and using an electric blanket/heated seats but today I’m wearing leggings and a T-shirt and IM NOT COLD!!! The palpitations have really improved and I haven’t actually had any in about 2 weeks so things are definitely on the up. I feel much better in myself. It did take me a few weeks to get used to taking the iron but I pushed through and now it doesn’t really affect me at all.

my next blood test is early August so keeping everything crossed but I know I’ve improved.

How much is a fortune? My DD is even lower

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.

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 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.

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.

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.

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

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

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

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.

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

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 🙁

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.

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 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!

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 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.

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.