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 :(

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

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.

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.)

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.

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.

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.

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.

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.

Imagine how women in the 3rd world must be.

I have ferinject iron infusions. My Hb has been as low as 4 with ferritin <4 (which means zero). Your results are fairly normal. You could probably do with a higher dose supplement or increasing iron in your diet.

It's a myth that iron infusions 'work better' than oral iron if you don't have an absorption problem eg crohns, ileostomy etc. Iron infusions can also cause horrific scarring - I've got a large dirty mark down my forearm which is permanent.

An iron infusion does not increase haemoglobin (or even ferritin) immediately. It will go up over several weeks as it does with oral iron.

You need a proper iron supplement together with vitamin C. Some are only available on prescription. I found Sytron to be the best tolerated & most effective. It's a liquid so dose can be split. I believe it was developed for premature babies with severe anaemia so it is very safe & well tolerated.

I recently found out my ferritin is 14, which explains the exhaustion, thinning hair and always being cold. I have been taking iron tablets for a year, too.

My GP also told me he couldn’t refer he for an infusion, and a private one including consultation is around 1k near me. Not doable currently.

GP has prescribed much stronger iron tablets (about 10 x stronger than what I was taking) and told me to take at night, at least 3 hours after eating or any caffeine, with fresh orange juice. I’ve been doing it for a month and I have to admit…I feel a little bit more energetic and I’m not so pale.

I’ll be re-tested at the end of July to see what my levels are, so we’ll see. I also have horrendously heavy periods (perimenopausal) and doc thinks this is almost certainly the cause, so has also offered various things to help which I’m considering - mirena coil, tranexamic acid.

Wouldn’t you be better leaving out the butter as that has calcium in it?

Mine has been 7 on several occasions and I was only given tablets that cause me really bad stomach upsets! It’s really bad. I got mine up but haven’t taken them since as they make me feel so ill.

One of my DD’s had ferritin 2 and haemoglobin 53 and they wouldn’t do anything except oral supplements. Paid for her to see a haematologist who recommended an infusion but no private hospital would do it (she was 14 or 15). She was exhausted and lost most of her hair. Eventually we found a doctor in France who gave her half an infusion dose and that solved it. She had all sort of tests, no coeliac etc The French doctor thought it was most likely long COVID as it can interfere with iron. There is a bit of research on that now. DD still takes the supplements but one infusion was enough for her. We also made sure she took supplements for Vitamin D, B12 etc as what the NHS considers normal is often sub optimal. They never denied her regular blood tests though so we just supplement now. I go to France on holiday and deal with it there if need be. Health care and teeth etc can be awful in England now.

I’ve had very severe anaemia before (my haemoglobin dropped to 48) and I needed blood transfusions and IV iron. Ferritin was 5.
I had no side effects from the IV. I really feel that it should be offered more widely given the many debilitating effects of low iron.

It’s important to find the root cause of low iron. Often for women it’s heavy periods. But it can be a stomach ulcer or issue like being an undiagnosed coeliac. It is hard to build up ferritin level with any of those issues as you are just immediately losing it again.

I found Transexamic acid helpful for heavy periods and had no side effects from it. I was prescribed a high dose by a consultant. I ended up having an endometrial ablation.

You’ve had good advice about supplements. I was advised to take them every other day as this aids absorption. I never managed to build up a significant ferritin level with supplements until sorting the heavy periods though and they also completely mucked up my digestive system.

Mine has been 6, I got an iron supplement that’s a liquid, the prescription iron tablets did nothing. I got it from 6 to in the 50s

This is really strange as I was told a haemoglobin level under 60 was considered incompatible with life and a medical emergency which would automatically qualify for a blood transfusion (in my case 3) on the NHS. Possibly different for children.

Unfortunately thats the nhs for you. My kidney function was outside the normal range but they decided no action was needed, even though I have various symptoms that imo warranted further investigation. It seems if you need anything more than the bare minimum investigated or treated you need to go private.

My levels dropped to 13 at the start of the year, after not going above 20 odd for almost 10 years. I was beyond supplements and an NHS Gp said "An infusion will make you feel better straight away, but we can't do it for you on the nhs" This was as like you my hemoglobin was normal. I had to pay privately for two consultations and an infusion...cost nearly £1700. Managed to get a little back from a work scheme, rest went on credit card. I feel physically better, it had got to the stage where I had debilitating pins and needles and skin crawling/itching, but the tiredness is still there, even though my levels are over 200 now!! I would do it again though and my hair/appearance/demeanor has changed enough for people to say I look/seem better. Honestly feel for you, I had years of progressively feeling awful. When I told the pharmacist my levels they basically laughed at me and said I'd never get them up just on diet and supplements alone. Its so unfair! An infusion takes less than an hour and is a simple procedure.

Wow that's horrific isn't it the poor girl lost her hair.

What's wrong with the NHS on this issue ??

Mine has never made it over 16...which was apparently fine. I've been on iron tablets for 3 years. Lowest I've been is 6, highest 16. Basically I need to persevere another few years, take tranexamic acid to limit my menstrual bleeding, and that's that! I have all the symptoms, have tried all the antidepressants they offered etc. They just aren't that bothered.

Spa Tone iron water. It’s more bio available

My DD has lost her hair, I feel dreadful
as it was so bad before I realised.

I’ve had two iron infusions in my life - within a week of each I was a different person. No side effects at all.

IMO this is another serious example of medical misogyny. It is mostly women who suffer from low ferritin. The NHS has made a policy decision here in order to save money. I don’t believe this is a decision made on clinical grounds.