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 :(

Mine was 11 when last tested a couple of months ago. The GP says that’s fine as normal range (at least on the NHS app) is 11 - 310!
Normal haemoglobin here too (as well as thing crappy hair, exhaustion, breathlessness etc). It sucks!

I’m currently taking 630 mg per day and I don’t feel any benefit for it yet, I started with 210 g a day, then 420 mg and when that didn’t lift my numbers, I’m told to do 630 mg I get a really bad upset tummy from it and I have the shits all the time, but I’m going to stick at it. I dont have much choice really. 🤷🏻‍♀️

Just get an iron infusion. It takes 30 minutes and is painless. Very few people react to it.But if you can get a referral to a private clinic from your GP - they should at least be able to do that, then you can request annual bloods to check your levels. That’s what I did and my levels have stayed over 100 at least 4 years on! It was down to 11 previously. If the levels keep dropping after infusions, it could be a sign of something serious like an autoimmune disease or bowel cancer.

I had to put it on a credit card (long paid off now) and I’d do that again in a heartbeat. Ok, some people really can’t pay but many of us can… you won’t get it on the NHS because tablets are available (they just take ages to work and give many people chronic constipation!). You can also buy tablets yourself. So this is why the NHS has high thresholds for infusions.

If you had to pay for root canal surgery, you wouldn’t think twice. If you’re going on holiday, but refusing to pay for an essential iron infusion I think it’s worth reconsidering your priorities. You will feel immediately better and soon symptom free!

Mine is at 2 and as I am allergic to iv iron, they won't do anything to help me

Galfor made me ill and Spatone was useless. Would highly recommend Ferrograd C.

Actually from memory it was not immediately after the infusion I felt better but definitely within a couple of weeks. I was getting constant vertigo whenever I walked anywhere or got up quickly or moved my head sharply. There was also the hair loss, nails etc but they took a lot longer to recover as you’d expect. There were lots of other symptoms too (restless legs) but the vertigo was the worst! It’s like coming off a roundabout and very disorienting. This definitely stopped within a week of the infusion

I feel your pain OP. When first tested my levels were 12 and after taking supplements for a year they've only gone up to 14. I am exhausted, I regularly get excess hair shedding and I do feel like bouts anxiety I suffer may be driven by this. Apparently women who suffer from PMDD are often suffering low ferritin which causes the body to go into a sort of shock just before/as they menstruate, causing extreme anxiety and depression. I don't know what to suggest but just engaged to say I'm in the same boat.

I was the same, haemoglobin OK but serum ferrin low, 15 in March and am now 85 from test last week - very surprised.

They gave me Sodifer on prescription but you can buy it. I took it on an empty stomach in the morning with a little orange juice and didn't eat for the next hour.

I'll admit I don't feel any better, but good to know it's worked.

Critically low? Mine was called normal at 9 last year! Women's health care is a fucking joke.

I think our doctors read from the same script. My ferritin was 6. Honestly I felt so awful. Brain fog, awful pain, could hardly bend down or walk up stairs, eye twitches, struggled to take a good breath, hair thinning and not growing. Advice? “Go and buy iron tablets.” I ate loads of steak etc for a few months. Went to a hairdresser in the hope of fixing my hair a little bit “oh, you have such little hair” wow thanks.

This is very dark and scary stuff isn't it.
It needs an expose

Is the iron fish a good thing? Can we get iron in our bodies through cooking with it?

Yes, iron is a mineral and leaches into the cooking water. You have to ingest the water though and add acid to the water to Release it. Many studies have found it works. You have to use it consistently and we use alongside supplements

Why should you have to pay when low ferritin is making you ill? I was as low as 4 and I didn’t even know about infusions - I was made to take tablets by GP - they didn’t help much, had horrible side effects and what they didn’t know was that I have an absorption problem too (so oral supplements don’t work well for me). I eventually got up to about 30 - it took 18 months and I had to have a merina coil fitted and took Spatone everyday which I could just about tolerate which finally improved some of the symptoms a bit. However because NHS wouldn’t treat it with an infusion I ended up leaving my job due to fatigue when I was on tablets and ended up on antidepressants. I have since recovered but had low iron twice more 11 and 9 - it made me so ill I couldn’t work and even an infusion didn’t work quickly enough to keep going . I managed to beg my gp for the infusion both times more recently and felt so much better afterwards - still takes around 4 weeks. I think it is bad that GPs / NHS try not to treat something so debilitating simply because iron pills are cheap- they don’t suit everyone and have nasty side effects - there are many illnesses and things like weight loss jabs for those that need it are way more expensive and seem to be more freely available on the NHS.

I had low ferritin and was having an operation but couldn't take the tablets for long as I've got ulcerative colitis and tablets affect it. Switched to spatone for a few months and it worked for me and bloods showed better ferritin levels.

Mine was 15. But I was prescribed iron tablets and they are slowly but surely coming up.

Another one recommending three arrows - doesn't cause digestive distress, actually works and not as temperamental as other types

Mine was 17 and I was told by the GP that I was fine and didn’t need iron tablets. I started taking Spatone, the apple one with vitamin C and I went up to over 30 quite quickly.
My stomach can’t take the tablets and this has been so much better.

I only found out I had low iron and vit d by getting private blood tests. GP didn't take my issues seriously at all. General tiredness, itchy skin, breathless up hills,.losing hair etc. Am taking over the counter iron but a double dose, vit c, avoiding caffeine etc. Feel so much better after a few months and the hair loss has even stopped too. I was 14 and retesting soon.

What I found really interesting is that my periods are now much lighter. They had got really heavy and horribly painful. I assumed that was just usual mid 40s perimenopause. But since taking iron my periods are back to normal again. Which will also hopefully help the iron levels even more. Didn't expect that as an outcome at all!

Yeah it sucks, but the NHS has to prioritise and tablets are available. If you have an absorption problem due to health condition, they will prescribe an infusion. Otherwise you have to pay for an infusion yourself.

Why shouldn’t we pay? There is a treatment available and I know it can be time consuming and for some unpleasant, but you have the choice of an infusion which massively speeds things up and for most, eradicates any side effects. £900 is a small price to pay for such significant health benefits. I can’t understand why you would not pay unless you are really challenged financially. You wouldn’t struggle on if you needed root canal… which is £1000 +

I know we have the NHS but it can’t possibly pay for absolutely everything. We do need to take some responsibility for our own health care costs and I’d see iron infusions in this unless you have a condition causing it such as bowel disease, cancer, pregnancy- then it is provided for. They have to draw the line somewhere

Comparing to weight loss jabs is not fair- these are literally life saving for some people and there is a very high threshold (BMI over 35/40 and obesity related health conditions required).

My local hospital says the normal range is 10.0 - 291.0, so it would think you were in the normal range. It’s changed the comment since 2023 but not the normal range.

When mine was 17 my GP told me to take ferrous sulphate (I think). Apologies if I’ve missed someone already saying this, but I’ve been told and also read that (counterintuitively) you should take the tablets every other day rather than every day.

I started with normal ferrous sulphate and got the usual side-effects, but then had a bundle of things from Boots which included Active Iron advance. I tried that, and prefer it. It’s occasionally on £10 Tuesday, but at 3 for 2 and 10% off it works out at £11.37 anyway. Despite what it says on the packet 30 tablets is 2 months’ supply for me.

It took me almost a year to get a blood test for mine, despite being significantly symptomatic and being told by numerous bloody receptionists that suspected anaemia wasn’t a reason to see a gp.

i think they only eventually gave me one as i started quoting nice guidelines at them.

finally got the test only to receive a call less than two hours later to go immediately to the haematology ward. My ferritin was 2.4 and Hb 77, that’s what it takes to get nhs infusions.

they did try various oral tablets after the first infusion but everything made me vomit. I’ve since had fibroid surgery which has worked wonders and should just need one final infusion next month as they want me to have something in reserve.

you shouldn’t have to, but if you have the means, I would definitely pay for one privately.

Just to add, for many people they only need one infusion to get them up to a high ferritin level and with good nutrition they can actually keep it well above the anaemia threshold over years. If it drops quickly it’s probably worth pushing for investigations as to the cause(s).

For me I’ve stayed well above 100 over 4 years. I’m convinced my iron dropped due to serious gastro illness that hospitalised me as a young adult (not an ongoing condition) and then pregnancy/ breastfeeding. All I needed was a leg up and now I’m doing great. I don’t know how common my experience is.

@Araminta1003 wrote 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.

This is interesting. I have had Long Covid since 2023: my ferritin level when I’d had it for a couple of months was 17 (see my last post 😀)

I’d heard that Long Covid was linked with low iron, but I didn’t know if that meant that people who already had low iron when they caught Covid were more likely to develop Long Covid. From what you wrote it’s not that.

My ferritin was undetectable and I was also anaemic with enlarged blood cells but I didn't get an Iron infusion (not sure you would really want a transfusion unless you it was a life threatening situation!). I have had Iron infusions in the past when both ferritin and haemoglobin was really low but they don't give them out regularly for low ferritin. You will need to just take the iron tablets over 3 to 6 months and go back for tests. Thereafter you need to ensure you get more iron and the things that help you absorb it in your diet and top up with a supplement if needed. If you have heavy periods they have medications which can help with that. I Honestly don't think my ferritin has ever got up much beyond 20 in my life, maybe momentarily after an infusion but it just drops again after and I'm probably now just used to feeling weak and tired all the time.