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 :(

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.

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.

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.

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.

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.

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 🤣

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.

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.

I live in a different EU country and mine is 15, also apparently normal and they don't treat.

I struggled for years with low ferritin, couldn’t get it above 15 even with supplements, I think this was due to peri menopause and heavy periods following childbirth. In the end I got an iron infusion on NHS when pregnant again as I was so anaemic, which bumped it to 127! Was amazing and then straight after having the baby, I got the coil and it’s stayed at 90. I would def try and pay for a private infusion if you can afford it. Some people react to a certain type of iron infusion, ferinject I think it’s called? But I had this and had no issues. If I ever have low ferritin again I would pay for an infusion privately.

I been here and wore the t-shirt. I didn’t realise how rubbish I was feeling until I felt what normal was. I feel for you. I tried loads of supplements, sprays, liquids and non of them worked. My consultant recommend ferrous fumerate which are available over the counter only at pharmacists. It took 6-9montgs of steadily increasing it. I would highly recommend 1 tablet per day with food to reduce side effects. Best of luck.

I know you’re being helpful but none of this will help.

OP I’m afraid I can only advise going private- I’d get a credit card to pay if I had to

Did the GP investigate why your ferritin is so low?

I had the same (ferritin 6) and no infusion offered via NHS. I got a referral to a haematologist who did not accept low iron without an explanation (like heavy periods) and he tested for coeliac and all other auto immune diseases. I was positive for coeliac!

I got an infusion privately in the end (life saving) and went gluten free immediately. I had to beg and plead my insurer and prove that I couldn’t take the oral iron or wait months to improve.

Best of luck, it’s awful to feel this way, don’t be fobbed off.

I’m down at 4 normally and been struggling foe
4 years. Luckily as it affects my blood I’ve had iron infusion several times and it def makes a different. I would push to see a specialist as that’s how I got mine. Good luck everyone

At its lowest, mine was 5. And I was never offered a transfusion by the NHS. Just advised to supplement. I took ferrous fumerate twice a day. It took a couple of months to start feeling better unfortunately. I felt the same level of anger as you though.

Mine is 6 and I had to request follow up and tablets as they marked everything normal due to normal Hb (only borderline!). They just aren't interested, you're not alone!

I finally got an infusion on the NHS when my ferritin reached 3. Go private if you can.

Exactly the same as my situation 💐

My ferritin was 5 back in January and my GP suggested increasing iron rich foods in my diet. I used my private health care through work to see a haematologist and she said it would be impossible to raise my levels to her absolute minimum of 80 with diet alone and arranged an iron infusion which I had the following week.

I really couldn’t believe how much better I felt within a few weeks. Even stupid things I didn’t link to my iron deficiency like really dry lips and itchy skin were gone. I didn’t tell my GP surgery so they are probably thinking how marvellous their advice was when my blood test three months later showed my ferritin had gone up to 113.

I can recommend Three Arrows heme iron though if you’re not vegetarian or vegan. You can take them any time and don’t cause any digestive problems. Rather expensive and need to be shipped from the US but much cheaper than a private iron infusion.

similar as most here, at 5 for ferritin and had to go private a few years ago.

any gps around who can share what the magic position is to get considered for iron infusion via NHs?

I assume almost all women would need one in reality hence the restriction…..

Eat liver. It’s packed full of the stuff. Don’t go down the plant based route as they aren’t bioavailable. You’ll get about 10% of the vitamins and minerals compared to liver or meat

I managed an infusion with higher levels once but couldn't get one at 11 another time. It's a lottery. The infusion was well worth paying for but also throw the book at it because you don't want to make it a regular thing if you can help it.

So interesting; I suffer with such itchy legs it’s unbearable. I have to take antihistamines to try and help. Lips are always dry too even though I drink plenty. Never knew there was a link.

Mine’s 9. I was prescribed ferrous fumarate 2 weeks ago and assumed (hoped!) that would work/make me feel better. But some of these comments aren’t filling me with much hope.

My iron is always low. At lowest was 10 or 11. I take iron all the time now.

I was diagnosed with MEcfs in 2021, but I definitely do a bit better if I keep my vitamin and iron regimen up.

For those who are chronically low, how do you know the iron count? I don't get a regular test. Do you just keep asking the GP?