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

My ferritin was 4 in 2023 and I had to pay for a private infusion, approx 850 with Nuffield health. The doctor there said they will accept anyone with levels under 50 if they have symptoms. You won't get one on NHS with 18 unfortunately.

I requested blood tests every 3 months until my levels were normal. This was how I realised that most supplements didn’t work until I tried ferrous fumerate which started to increase the levels slowly.

Mine was 4 and haemoglobin of 86. No infusion, just iron tablets and a coil fitted. Got it to 34 by the end of the serious tablets. I started feeling rubbish again so am back to trying to take OTC iron regularly now.

Mine was 7 recently, I them started taking iron supplements. How long have you been taking them OP and have you had it retested since?

Tbf I think both NHS and private doctors use similar guidelines. My B12 was low according to Google but both my GP and a private endocrinologist told me it was within the normal range.

It does work but it takes a while, for me it was about 6months but maybe after 3 months I felt some improvement but it certainly wasn’t a quick fix.

The magic of an iron infusion. I think it cost £750 in 2023 and it was so so worth it.

(Attitudes to this in the NHS make me very cross.)

I didn’t know either until my haematologist told me. I used to lay in bed at night practically in tears because my skin itched so badly I couldn’t sleep - great when you’re already exhausted from the iron deficiency. Creams and antihistamines did nothing to help. Lip balms didn’t help the dry lips either but within a few weeks after my infusion, I barely needed to use any.

Non haem iron is less bioavailable. To say it’s not bioavailable is a lie.

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?

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.

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.

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.

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

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…..

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.

Exactly the same as my situation 💐

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

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!

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.

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

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 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

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