Low iron/ ferritin- so lost!

[Lockdownbaby2021]

posted last year about my serum ferritin being 12 and the drs saying it was normal. I pushed for iron tablets prescribing which they did but they made me feel awful, dizzy, sick, stomach pains!!!

Fast forward to this year, at the drs crying as i'm feeling so low, tired, brain fog, palpitations and struggling to put on weight despite eating loads. My periods are heavier than normal too.

she repeated my iron levels and my ferritin came back 17... yes only 5 marks up from the last one😫

She suggested i take a supplement, which I had been doing anyway! so no help at all. She also prescribed something to make my period lighter but i'm reluctant to interfere with nature and not heard much about this medication!

I ended up buying some nutrition geek iron supplements online and taking them with orange juice but I feel like I'm getting worse.

I've bought some spartone liquid sachets but they taste disgusting!!!!

I just want everyone to give me their magic ways of increasing iron... fast!!

I take transexamic acid for the same reason, its amazing.

Do you know what your bloods were?

OP, I have low ferritin too. I take traxenemic acid. By day three, I feel nauseous on them, but I am now prone to a lot of nausea (and sometimes being sick), so it may not be that common a side effect. The tran acid has reduced my flow, however my period has gone from 6 days to 9, but the last few days are very light. Overall, it probably reduces my period blood loss by a third, despite the extra days. I’m taking it as I’m trying not to get even worse as it takes me months to move ferritin up a tiny bit on iron tablets - I just can’t seem to absorb it anymore.

Has the change in doing anything for low iron happened in the last few years? One of my DCs is in reception and I got my iron tested several months after she was born. I was feeling really fatigued - ferritin was high 20s and GP prescribed iron tablets. I seemed to absorb the iron then and issue was resolved. Despite being much more symptomatic a couple of years ago, I had bloods done and was told they were normal, but eventually I found out my ferritin was 11. GP does’t seem bothered how shit I feel and that after all this time on tablets, my ferritin is in the teens. I think they feel I’m making a fuss over nothing, although they also suggested anti depressants to cope with feeling shit over the symptoms caused by low iron ffs, but gave me an absolute no to infusion.

Ferritin was 4, Hb was around 100 I think.

Couldn't talk, eat or move without gasping with air hunger. Couldn't sit or lie without deep long bone pain in my legs, sleep was awful. Thought I was developing dementia as my memory had big gaps in it and had word finding difficulties, felt low and anxious and often tearful. I had to drop hours at work as needed to nap and rest during the day and couldn't concentrate for long periods.My hair was falling out in fistfuls.

Post infusions my hair no longer falls out, I'm back working full time, no leg pains, no memory issues, no anxiety, I exercise loads without any issues and sleep fine.

I'd been anaemic from heavy periods for years and only ever been told to take iron tablets, which I'd do for a bit and then give up from side effects. Even with the symptoms and blood results I had they just prescribed iron tablets until I pushed hard for infusions.

The difference in how I feel and what I can do is extraordinary and it makes me really cross that I could have felt a lot better a lot earlier with more compassionate and proactive management of my iron deficiency.

I have had low ferritin for a few years now and have finally got my number up to nearly 100. I take a ferrous fumarate tablet every morning with a glass of orange juice. Was originally prescribed them for 3x a day for a short while but now buy them over the counter as cheaper than prescription!

I can tolerate 1 a day with no side effects.

@PaddingtonBlah I can relate to a lot of this. I’m glad you have a lot of your life back and sorry you had such a fight to get help.

Spatone is bugger all use if you are very low in iron and ferritin. Ferrous fumarate is more gentle on your system than ferrous sulfate. If you get constipated with it, try taking it every other day to start with. Also, if your Vitamin D is low, take that too.

Hi op, ive been in same situation really for 15 years. There is no magic way to increase your iron levels fast with supplements unless you have an iron clad stomach!!

I recommend taking the ferrous sulphate or ferrous fumarate once a day in morning. I learned last year it is best to take it on ALTERNATE days. (i was prescribed 3 tablets daily as ferritin was 7 and couldnt even tolerate taking one every day, doubled over in pain by day 5, on the loo for hours, sore bottom, stomach burning, Disastrous.

This is the evidence below for increased absorption if you take it alternate days.
Its to do with hepcidin levels rising once you take oral iron, decressing absorption. I was bloody raging when i found this out, by myself, , as have suffered so much and kept thinking i was a failure for my lack of compliance
https://www.bmj.com/content/382/bmj.p1345/rr-0
Also google BMJ &+ sustainable prescribing of iron replacement therapy

Ferrous bisglycinate, sometimes called gentle iron is expensive (gp wont give you it on prescription) so you have to buy it yourself from boots or holland and barrett. It doesnt have the awful gadtrointestinal effects.
This is a useful reference re different iron types.
https://medium.com/@zeeplay/iron-supplements-explained-61c1ce570313

Avoid taking your ferrous sulphate or fumarate with these things
tea coffee milk yoghurt cheese, wholegrains, eg wholemeal bread or brown rice or oats, legumes. Polyphenols, phytates and calcium interfere with absorption. If you have to eat with it, apple or white bread or banana.

Spatone is fine but there is not enough by way of supplementation, unless your gp will allow you to take more. I took it when my stomach was bad.

I still force myself to eat liver.
.

Ive been taking the tranexamic acid TA for 10 years, probably more. I was reluctant too, thinking it wasnt natural but i would recommend reducing the blood loss by whatever means is open to you. I took it three times a day for the first two days of the period. It has a written list of scary side effects but i never had any of these. It did reduce blood flow by encouraging clotting. I never pushed to increase the number of days i took it as i always felt a little bit nauseous with it, and couldnt face another day. Also i cant take the iron pill and the tranexamic acid on the same day.

I had to be careful that my flow had really started properly before taking it, as sometimes the TA would delay my period coming out.

My heavy bleeding was due to fibroids but it took years for me to realise i even had heavy bleeding and only found the fibroids at age 48. Im 54 now, still menstruating.. They are more frequent which is why im still low iron.. Havent needed to take the tranexamic acid for the last 6 months as flow not heavy. They will stop . Ive had night insomnia and a few hot flushes......

A kind female gp told me to aim for a ferritin of 70 but i think mine is still only 24, at its worst it was 7 and i had a bald bit, and i was weeping at anything. (its the low oxygen). Optimal ferritin (iron storage) is definitely 70 upwards. Normal is not the same as optimal.

Mirena coil worked well for me in stopping heavy bleeds. No hormonal issues for me.

I hear you. Mine went to 6 and I felt awful, dh thought I was depressed so I was relieved there was actually a medical reason that could be solved and I wasn’t losing my mind (I didn’t feel I was depressed but ended up thinking well maybe this is depression). Ferrous fumerate makes me sick but I’ve found ferrous gluconate (over the counter in a pharmacy) plus innocent orange and carrot juice is the answer for me. I’ve also begun collagen powder in my morning coffee and it’s made a huge difference - I look less low ferritin- faced if that makes any sense and feel more myself.

This thread should be bloody compulsory reading for trainee GPs about the importance of correct prescribing to increase compliance with iron therapy and miminise GI upset, and the link with mental health. Ironically, i was so alone during those years... Wasnt on mumsnet then!

I felt far less tired within days and within a month my ferritin levels were much, much better and all my symptoms had resolved. Can’t give you numbers afterwards as I’ve forgotten, but one of my pre-infusion ferritin levels was 5. It’s still low now but I try to manage it with over the counter supplements.

Hmm. I've been assuming some of my symptoms were peri. Aching. Restless legs. Hair loss. Brain fog. Lightheaded. Exhaustion. Inability to engage. Maybe I need to somehow get my ferritin up to see if this resolves. I honestly can't continue with ferrous sulphate. I feel like I've got liver failure! Abdomen hurts. Feel sick. GP wasn't bothered as not anemia.

Not sure if others have mentioned but iron bisglycinate is better absorbed than the usual stuff that gets prescribed. I have the solgar one, think it was from Holland and Barrett.

What should ferritin actually be to be healthy?

Iron levels of 13 here and told "normal".
I take wholefood iron from cytoplan as it doesn't make me puke like other otc iron has. I don't think it's that strong so will give some of the other suggestions on this thread a try too. I don't feel terrible but that is probably because I'm used to having low iron.
How often do you recommend getting iron levels checked?

I spent such a long time trying to get on with different forms of iron when I had a really low ferritin count. After doing loads of research I came across something which said that you don’t need to take ferrous sulphate 3 times a day - every other day is sufficient. It seems to have done the trick for me.

I take 1 ferrograd C (which has added Vit C) every third day now. Mind you, I haven’t had my iron levels checked for ages as my GP won’t do it any more but it definitely worked taking one every other day instead of 3x a day.

I take mine with a vitamin c pill. Does it make a difference if you do that rather than orange juice?

i'm sure people have said at least 70 to feel okay!

Can I just say thank you all so much for your advice so far. It's so reassuring to know I'm not alone and not just down in the dumps for no reason! I am going to try some of the methods mentioned and also pick up my medication to lighten my monthly flow! I hope we can all use this post to keep track of how we're doing ? I will try update as much as possible. I wish I could afford an infusion though 😣

Also, why are these symptoms not more known? Growing up all i thought low iron gave you was Pale skin and tiredness!!

Who knew it can cause so many issues!

Sending love to you all

My ferritin was 9 and haemoglobin at 95. I got two iron infusions on the NHS (not sure how!) and four months later the ferritin is at 150. I can't tolerate the tablets due to gastric surgery, maybe that's why I was lucky enough to get the treatment. Hope you feel better soon, OP.

Hello my new low ferritin friends!

I literally had my 1st iron infusion last week, on the NHS. Like everyone else I've been feeling shit in all the ways for ages. I also have rheumatoid arthritis , and am really struggling with constant diarrhoea. Maybe it is IBS, maybe it is the meds I take for RA? I've lost so much hair. I'm at the point now where I need to crop it as it's like an all over comb over.

Despite that I still had to cycle through 3x iron tablet types: ferretin, sulphate and gluconate. Then my haemoglobin dropped again, I was prescribed f. Fumarate AGAIN and I asked if there was anything else I could take... A different gp said there was not, that she could refer me for an infusion but they'd probably reject the referral. But they didnt! So 4 weeks later I got some lovely IV iron. I went nowhere near a gastroenterologist.

Were you prescribed ferrous fumerate or ferrous sulphate? I've had both and fumerate is alot gentler on the stomach, I felt sick on sulphate but no issues with fumerate and have been on it for several months.
My GP told me theres actually new evidence to say combo with vit C may not be as effective as previously though but there is a big link with taking supplements far away from anything with calcium in as calcium really inhibits the uptake. I've also read there's some evidence to only take iron tablets every other day, your body can only absorb so much so you would still absorb the same but have less effects on tummy supposedly.
Would definitely take the tranexmic acid but if this does not improve ferritin levels then would push for further investigations as to why you are not absorbing iron, could be a malabsorption issue in your gut. Also NICE guidance is ferritin should be above 30, and my doctor said really should be above 70, so keep pushing until yours is better.

So I have been to the docs today (saw a new dr) about something else (women related) and she noticed on my records how low my iron was from my last test. She asked what they (the drs) were doing about it, I mentioned they just said take a supplement and she said, right, keep taking what your taking and I want to test you again in 3 months because i'm not happy with that and we need to keep on top of it. Finally, a dr who's not just said your' not anemic' 'take a supplement, bye' 👋🏻

I feel like she knows we need to get to the bottom of 'why'. She's also suspected some possible endometriosis as I mentioned my bad stomach and period pains between cycles, along with heavy periods.

I’m glad that you’ve found someone helpful. Also, who is this holy grail of a doctor?!

How are you feeling after the infusion? Please keep us posted! I'm wondering if my insurance might cover me if my bloods don't show improvement this time. I've stopped breastfeeding now and this will be my third set of 3 months of supplements! So fingers crossed they'll come up on their own when everything stabilises now xx