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 :(

I am vegan and they always say that’s why to me but even in my late 30s onwards I had levels under 11

Mine was 6 .it has taken 13 months to get to 70.i take a galfer tablet everyday.i have a terrible diet so that little pill is a must for me.

I was pregnant and my levels were 10. They still wouldn’t allow transfusion for the same reason as you. I have been feeling tired and awful for 2 years now and I’m considering going private.

My daughters was 8 at one point (she was 14) and they did not care. We paid for an infusion when she was over 16, but one period later, she is as pale as a ghost again. NHS will consider 18 normal, even though it really isn’t. Either try supplements or pay privately.

Join the iron protocol group on Facebook if you have it.

Thank you. 🙏. I will get one.

My daughter was given anti bleeding medication. I trust she has some now?

She is on the pill so doesn’t have many periods on doctors advice, but this one started, just before her A levels. Her first period at 12 led to a full blood transfusion - 28 days very heavy bleeding and years on investigations and no cause found (been dizzy, fatigued for years). Going to ask the GP to move her to mini pill so no periods as everytime she has a period she loses so much iron and then for a week after she vomits daily.

https://meassociation.org.uk/2025/03/news-medical-iron-dysregulation-linked-to-long-covid-development/

Here is the summary of the research. Link at the bottom goes to the full research paper.
I have had friends throughout my life who got eg glandular fever and then ME or an exotic virus and then ME.
Not a researcher myself, but sounds to me like a virus can trigger an iron dysregulation.

There are long Covid and ME clinics now. But for too long the NHS has ignored stuff like this. They actually end up spending far more. My DD was in and out of the GPs and even hospital over several years for infections. Had they just treated her with an infusion she would have gotten better far quicker and actually cost them less.
More recently, I have another DD with a gynae issue. Multiple visits to GPs and referrals and finally an appointment with a consultant (1st one 11 months later). I just took her privately - 10 minute with a gynae specialist took one look, procedure booked in a couple of weeks later. All in all cost is actually going to be far far less then the NHS digging its heels in over many months and years.

Megaloblastic anaemia? Wow I’ve never actually met anyone who got to that stage. How was your folate and B12?

@LarksAscending I didn't actually know it was called that! I was given additional supplements of B Vitamins as well and now take a Methyl B Complex daily. Anaemia and low iron has been and ongoing battle for me as it was for my Mum and Grandmother so obviously something genetic going on I think.

Have they done any other tests to determine the cause of the low ferritin or other symptoms.

Celiac comes to mind- i had similar symtoms- gp did a range of bloods and celiac antibodies were raised. Iron levels were also low do was put on iron tablets. The damage to the stomach lining stops nutrients being absorbed. First endoscopy was inconclusive so repeat bloods and endoscopy 6 months later confirmed celiac. That was last year.

I also have underactive thyroid (diagnosed) nearly 20 years ago and symptoms can be similar. Was diagnosed with anemia a few months after that diagnosis too ( a very on the ball gp that thought i looked very pale and asked if they could check iron levels - in went for something completely unrelated).

Good luck and hope you feel better soon.

I live with ferritin in single figeres. A figure of 22 post infusion is perfectly acceptable to them. I have open access to a day unit, but only based on Hb, never iron or ferritin. I get an infusion with haemoglobin below 80 and a transfusion below 60. I have mine tested every twelve weeks for life.

It’s crap isn’t it ? I am hypothyroid so I am always tired, but my ferritin levels really aren’t helping I don’t think.
My vitamin d was through the floor though, and my GP had ticked that off as normal as well, even though it really wasn’t normal.

I actually argued with the GP when I pointed out my hair. Her response being that my hair would not be the same as in my twenties! When I suggested that this was ageist and I mentioned the need for the ferritin to be above 70 for good hair growth. She did not take kindly to this. I mentioned an infusion and was warned off for anaphylaxis and was sent away with stacks of boxes of ferrous fumerate.

How do you challenge 💩like this?

I think this minimises the impact of anaemia a bit. Almost anyone with very low iron will have severe fatigue, low cognitive function, possibly heart symptoms, low immunity etc. They’re nondescript symptoms which can be put down to other causes until they become very severe and (in my case) life threatening. I haven’t got data on it but I would suspect being anaemic for a long period might be just as damaging as being overweight- your body is slowly and continually being deprived of oxygen. And probably dangerous in terms of ability to drive etc. I certainly wasn’t safe to drive when I was severely anaemic but put it down to tiredness of having young children.

It’s almost impossible to build up ferritin from tablets whilst also losing it through heavy periods (the main cause in women) and since low iron itself causes heavy periods you can get trapped in a vicious cycle. No one absorbs iron very well because it’s pretty toxic in high doses and causes side effects which themselves inhibit absorption. My haematologist explained that when you take a lot of iron orally your body produces a hormone which inhibits its absorption.

I had one infusion (+ transfusions) after which my ferritin levelled out at 20. I took very high dose iron for a year after that and could maintain the level but couldn’t build it up until I had an op to treat the heavy periods. But at least at 20 I was mostly functional.

I get that the NHS can’t fund everything but if say a transfusion was offered for women with ferritin under 10 who had been unable to raise ferritin with tablets in 6 months or had a known cause of low iron, you would likely avert anaemia, which can be really dangerous.

But I would say that if you do end up with a Hb below 70 the NHS take it far more seriously and will treat you (at A&E if necessary).

There are loads of similar threads on here. A lot of women have low iron and are being refused treatment by GPs. I get the impression it's not worth arguing, you're better off trying to self treat through diet, supplements and potentially private infusions.

Be warned though, I've had two infusions and both times been hospitalised because they've caused critically low phosphate levels. It seems to be a reasonably common side effect but one that most doctors dismiss. I've got more serious long term effects from the low phosphate than from the low iron. (I didn't go private, I was under haematology for cancer).

I can't tolerate iron tablets but I'm having some success with an oral spray by Better You. They sell it in supermarkets etc. Worth considering if anyone's in the same boat.

I agree with you to a point about taking responsibility for your own health. I’ve done that myself, have done a lot of research and paid for private blood tests to get levels up to optimum. But the problem IMO is that the NHS reference levels are too low. I wish there was a way for them to flag these up to you for you to take your own action. I pay £29 for private B12 jabs every couple of months for example and these make a massive difference.
Not to mention that there are many links between chronic deficiencies and long term health problems. I’m sure I read somewhere that B12 and possibly vitamin D for example have links to dementia later on in life.
Added to that, if you have a combination of say, low folate, iron, B12 and Vit D (any combination) symptoms can absolutely present as depression and/or anxiety. How many people are prescribed anti depressants instead of correcting these levels? I thought I had depression at one point until I improved my levels with targetted supplementation.

WLI are a marvellous invention IMO (I’ve never needed them so no skin in the game) not just for how much they can improve someone’s life but also because of the prevention of chronic health issues that would cost the NHS much more to treat than the WLI cost. It may be the same with some of these deficiencies, too. They help your mood, your immune system, your cognitive function etc etc.

Two months ago my ferritin was 18. Started taking iron bisglycinate, beef liver supplements, B12 and Vit D and am going to re-test next week and see where I'm at. I'm doing this through Thriva. But blood test aside in just two months my heavy periods are now transformed. SO much lighter. I didn't even realise that increasing iron would give me much lighter periods.

I wonder would very low ferritin be mainly a female issue, I don't know, but heavy prolonged periods etc. and other factors must affect ferritin only in females.

If that's a yes, well it's another misogyny thing. If it's no and men are equally affected, I apologise for assuming this. 🙄

Completely agree with you and in cases like this of course the NHS should fund infusions. But there are a lot of people who are low iron and not diagnosed anaemic - they can’t all be funded. But they can choose to have it privately.

Agree with everything you say, the thresholds for the NHS are less than other advanced healthcare systems. They need to be higher. But they are set at these thresholds now, so it’s not really fair to criticise individual GPs who are just following guidelines (not saying you are btw!).

I do think i was lucky to have a sympathetic GP who talked to me about the infusion option even though it’s not available on the NHS and offered to put a note on my file for annual bloods. I know not everyone will have that experience and GPs can be really dismissive about the impact of low iron and that’s really unfair.

Yes the WLI are being funded because the cost-benefit evidence is strong. They really could be a game changer for the NHS if patients can sustain the benefits

My haemoglobin in April was 114 and my ferritin was 4.

fobbed off with the tablets too.. had the usual symptoms that have been mentioned here and felt like I was going to collapse.

my cause is heavy periods so I also have the tranexamic acid which only takes the edge off.

I am so mad they leave us like this! I work as a medical secretary, I recently did an urgent referral for a transfusion for a man who had higher readings than me!

I’m glad I’ve found this thread. Had my bloods done the other day and iron is 13 gp has prescribed supplements but I’m wondering about iron infusion