Ferritin of 7...can anyone help?!

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I have a ferritin level of 7 (and Hb slightly on the low side too), and feel like crap. Constantly tired, lethargic, migraines and keep comfort eating to give myself an energy boost. GP not really interested...I've tried various iron supplements but can never tolerate a full dose due to GI symptoms.

Has anyone else experienced similar and have advice on what might help? Or any GPs around who can advise? Starting to get me down...I'm in my 30s but feel much older with things as they are!

I had similar, caused by heavy periods. Iron tablets weren't very effective, and I find GPs quite dismissive on this issue and the problems it can cause. They don't seem to realise that even if you get your ferritin into the normal category it can still be low enough to make you feel awful. The only thing that helped me was having an iron infusion, I had to pay privately though.

I'm in the same situation. Very low ferratin levels and I feel so tired. How did you arrange an iron infusion @GlitchStitch ?

I was supposed to have one via the NHS but it didn't happen, I contacted the iron clinic in Cambridge. Sent the consultant my most recent blood results and he booked me in. Its a pretty short outpatient appointment, expensive though.

I had an iron infusion on the NHS with ferritin of 7 and hB of 9.something. Like you I can’t tolerate oral iron. I had to ask the GP for the infusion though, they did not suggest it. It was arranged via the local hospital, two visits a couple of weeks apart. Privately it was about £700-800 all in when I researched.

i think our local hospitals criteria is under 10 for ferritin and under 12 hb.

good luck.

@GlitchStitch Thanks for replying. That's really interesting...have heard mixed things on iron infusions e.g that they can make you feel awful too! But sounds like it was really effective for you. Did the improvement last a long time or do the effects wear off?

I had a ferritin level of 1 and below normal hb - needed a blood transfusion and an iron infusion. I would push your GP further if possible, look up the NICE guidelines.

You also need further investigations as to why levels are low. The best description is your ferritin is your backup iron storage, if hb is low, the storage will be used.

Sometimes after an iron infusion you can feel pretty awful until your body adapts to the sudden high levels of iron. First time it happened to me, I felt worse than I did without it, after a couple of days I felt much better.

Should add that once the GP referred to the hospital and they accepted it (ambulatory care than than a specialism), I got the first infusion appointment within ten days.

Thank you, I would meet those criteria so am hopeful this might be a possible solution!

Mine is low and I feel horrendous. Doctor gave me tablets and told me to get bloods done again in a few month. But I'm almost due to go back and still feel impossibly tired

contact your practice manager with a complaint and the nice guidelines

I had the infusion at the end of January, I think I had a thread about it at the time. I had no real side effects and I started to feel better within a couple of weeks. My restless legs and shortness of breath went away really quickly, my fatigue took longer as I just had no stamina anymore. My hair started thickening a bit after about 4 months. Unfortunately I'm starting to get some slight symptoms again as my bleeding is horrendous, I imagine I will need another infusion within a year of the last. The consultant did say that this may be what is needed until my bleeding is resolved. His criteria to infuse is if someone is symptomatic with ferritin of under 50.

Also my ferritin was 4 at its lowest and my symptoms were terrible, and I still couldn't get an infusion on the NHS despite it being agreed that I needed it!

(apologies if you've tried all this)

Have you tried the iron supplements with 'standard' advice, eg avoiding dairy, eggs, tea etc near them (I leave 1.5hours each side), but with orange juice etc?

Also I believe some people absorb eg the sulphate but not the fumarate one, or vice versa. And there's liquid iron too (and I find out on Monday how well I've been absorbing that) (very excited).

I'm sure I also read the other day that at least one OTC formulation has a really low dose of iron in it.

And starting off with a really low dose (ie not straight to three doses a day which frankly can make you want to curl up and die), and definitely with a main meal to begin with? Obviously you build up over a few weeks towards the full dose, and wih less food.

(I am grateful my GP takes this seriously (although less keen on the pharmacist who merrily told me to take x3 doses a day straight off)).

I also paid for a private iron infusion. Tbh it made me feel like absolute shit for a week (bad case of iron flu) but I felt a million times better afterwards, took about two weeks and for about 18 months I was ok.

The problem is the reason (hugely heavy periods) wasn't addressed so I ended up needing another, and ultimately a blood transfusion

Thanks everyone, really helpful advice, and I'm sorry so many of you are going through this too! In terms of the cause, I think the nurse at my GP practice is fairly convinced it's heavy periods, but I'm never quite sure what counts as heavy when they ask me this? Apologies for too much gory detail, but my period lasts around 4 days and there's 1-2 days where I need a super plus tampon every couple of hours. Does that sound like it could be the cause?

I think nowadays they recommend a single dose, every other day. Your body absorbs less iron for up to 24hrs after each dose so by spacing them further apart you actually get a better result

My periods sound quite similar for the last 18 months. Although I get a strange hour where I can soak through heavy period pants and jeans too. My ferritin is 20. I’ve been on ferrous fumerate for 6 weeks now and have another 6 weeks to go. GP didn’t ask me to go back for another blood test but I am going to insist. I also want them to test my thyroid antibodies as my TSH was 3.8, but they don’t consider that an issue.
My hair is still falling out by the fistful and I get headaches most nights and have awful insomnia.
I’m only 31 and just starting TTC - GP wasn’t interested at all in my change in periods to very heavy.

@RosiePH Yes sounds quite similar. So frustrating that many GPs don't take this seriously. To be fair mine did on the occasion I saw her but now I can't get to see her again and keep getting triaged to the nurse who has zero interest in understanding/addressing the cause.

I had ferritin of 3, felt so rubbish. I took ferrous sulphate every other day. With orange juice, no caffeine. Also spatone water helped. I Google iron rich diets to death!! Mine was pretty quick to improve. They did loads of tests to make sure I wasn't coeliac or anything too. Good luck!

I’ve had 4 iron infusions in about 8 years. Love them. So much better than iron tablets. I get 18 months to 2 years of normal iron levels from each one. I’m not in the UK. I get mine done privately via a GP clinic. It costs me about AUD$200 out of pocket after Medicare rebates. Well worth it and probably comparable to the cost of iron tablets over the same time period.

I don’t feel unwell after the infusion. After a week or two I notice that I feel less crappy and that I don’t get breathless as easily. My DH has felt unwell sometimes after his iron infusions. Lots of aches and pains and tiredness. That goes away after a week or two and then he feels better.

Heavy periods can definitely contribute to ongoing low iron. The Pill or a Mirena coil can make a big reduction in the amount of blood loss so it can be worth trying them. If your baby making days are over an endometrial ablation will stop any bleeding permanently.

Are you, or have you been a runner OP?

You should be entitled to an infusion at that level. Check the nice guidelines and complain to GP if they refuse.

Alternately, switch to heme iron, much more absorbable and no side effects. I took Ferrous Sulphate (non heme), for months and it did precisely nothing for my levels, but heme iron did the trick.

Try 3 Arrows or might be available on Amazon.

I'm on a single, alternate days dose these days, but it's a maintenance one following a decent iron level last winter.

but yes, much more pleasant to deal with 😊

i definitely have different side effects from different supplements too.

Yes I’d say that counts as heavy. I took mefanamic acid and tranexamic acid for years to reduce the flow of my periods. They definitely helped. I am now in the mini pill though. You should look at this definitely.