I can’t hold on to my ferritin levels

[Septemberintherain]

Due to really heavy periods, caused by recurring polyps, my ferritin levels have been low for a while.
My GP let me struggle on with ferritin of 3.
In February of this year, I requested an iron infusion as I felt so bad, which they allowed.
6 weeks after the infusion I had my blood tested, my ferritin was 150.
A month later I had a uterine ablation to reduce my heavy periods and hopefully allow me to keep my iron stores up.
But, I’ve just had another blood test and my ferritin is now only 18.
I’m concerned it means I can’t hold on to my iron stores.
Does anyone know if 18 is low for ferritin?

Have your folate and other levels been checked? Your thyroid function?

Yes 18 is low. I was told that under 30
is low and put on iron tablets. I got down to 7 but it was due to pregnancy and has come back up to 50ish a few months later… I would ask for a full blood screening to check for other deficiencies and thyroid problems etc.

fucknuggetsandchips I had lots of bloods done last week. They all came back normal. The ferritin came back ok too which is annoying as I’m sure that’s too low.
Sotired22 I thought it was classed as low too. I had full bloods done last week but all came back ok.

NHS guidelines say anything under 30 is evidential for iron deficiency.

Many people are unable to maintain adequate ferritin levels.

The infusion wouldn't have permanently fixed it, rather it got your levels up to satisfactory levels but then you need to keep taking supplements either otc or prescribed to keep it up.

Is this with you taking iron supplements too?

It can be a sign if coeliac disease.
You need to keep taking iron supplements.
yes 18 is low. You can have another iron infusion
For some people going gluten free is helpful.

I'm trying to improve my iron levels too. My haemoglobin and ferritin are both low, I suspect also due to heavy periods but my gp said there is no need for investigations as to the cause because my periods are regular and I don't bleed between periods. Yet they are increasingly heavy with huge clots. I've just ordered some iron bisglycinate in the hope that it will help. It's meant to be gentler on the stomach than ferrous sulphate/furmerate.

You may just need a longer course of supplements, but ask to be referred to a specialist/s to check there is no underlying issue.

In my vast experience, deficiencies are almost always caused in the gut.

How is your digestion? Do you get bloated?

Are there actual specialists? I had no idea. Also had no idea you could have a transfusion!

I go to the GP roughly twice a year with this. They always give me a blood test, levels come back low and they ask me to take iron, I tell them I’m already taking iron and I never hear anything back from them.

Until I finally give in waiting and go back and they give me another blood test and the cycle continues.

I’ve just checked on my NHS app and my levels are consistently 6 or 7.

@FanTaill you can get IV iron infusion. You’ll feel amazing for a few weeks afterwards.

But it’s a band aid though and unless you get to the root cause, you’ll end up low again. Find a gut health nutritionist and start there.

Sorry, should have put in my op that the reason I needed the infusion was because sadly, due to awful IBS I couldn’t tolerate any of the iron supplements. It’s so frustrating as I haven’t found any (apart from Spatone) which won’t cause diarrhoea and nausea for me.
Lavendersummer I’ve have had several tests for coeliac disease, including biopsies from a gastroscope and they all came back ok. I am gluten and dairy free and follow the low fodmap diet as I have bad IBS.
CreatingHavoc I had the same as you. Regular but very heavy periods including clots. I had to push for a scan and it turned out to be uterine polyps. How old are you? Mine started getting bad in my late 30’s. I’m 49 now.
Betahydroxybutyrate I have a terrible digestive system. Endless symptoms (bloating, gurgling, gas, nausea, acid, indigestion, urgency etc) which I’ve struggled with for years. I’ve had a colonoscopy, a gastroscope with biopsies, a ct scan (that was all in 2019), this year a pill camera endoscopy and upper digestive us scan. Nothing found. They keep saying it’s ‘just’ IBS. I’m due to have a SIBO test soon.
Pumpkin20222 sadly all the iron I’ve tried have severely upset my, already awful, digestive system. It’s so hard to get referred to a haematologist. Even when I had my infusion, I never saw a consultant, I was just under a haematology nurse, all my correspondence was through her!

I really don’t want another infusion as I felt awful for 3 days after, sadly never had the euphoric feeling that a lot of people feel after!

I take it at night, so not on an empty stomach, with vit C. When I tried to take a large dose during the day the nausea wave was terrible. Liquid iron was easier to take.

Have you tried Floradix? It's a more gentle liquid iron. Holland and Barrett do it.

Have you ever tried a haem iron supplement? I get diarrhoea and painful cramps from most forms of iron, have tried iron sulphate, fumerate, bisglycinate, even floradix or more than one sachet a day of spatone is an issue.

Haem iron (the kind found in meat, so not suitable if you're vegetarian) has been fine for me, no unpleasant side effects at all and is supposed to be better absorbed.

Pumpkin20222 silentpool, I’ve tried them all and tried various times in the day but they all make me poorly. The only one that I’m ok with is Spatone but the hospital said it’s just not strong enough.
Utini it is the one thing I haven’t tried. I joined several FB anaemia groups and some mentioned the Three Arrows Haem supplement but I couldn’t find it here in the U.K. and it was quite expensive to get from the US, do you know of any good ones from the U.K.? I’ve had such a bad experience with so many supplements I was concerned about spending so much for it to join my draw of half empty bottles!

drawer

@Septemberintherain i am indeed late 30's! Over the last 6 months it's got so bad that I've felt uncomfortable going anywhere for the first few days of my period. I will push for a scan I think and hope these iron tablets help in the meantime.

Have you thought about food intolerances? Your digestive symptoms are typical of intolerances. It may be that you have several intolerances so cutting out one or two of the most common culprits might not ease your symptoms enough. It might be worth doing an intolerance test.

CreatingHavoc I think our hormones start to go out of whack a bit even before Perimenopause symptoms start. It may be worth getting a scan to check for polyps or fibroids. My friend had the same issue but her scan was clear and then she had the Mirena and has been fine.
mibbelucieachwell I do follow the low fodmap diet. I had the York Test done a few years ago, it flared up 4 foods which I already knew caused me issues but I had already eliminated those (dairy, eggs and wheat/gluten).

'The only one that I’m ok with is Spatone but the hospital said it’s just not strong enough'

They're talking bollocks my ferritin was very low and it's now up to 40, not ideal but it's definitely climbing slowly but surely. Take it with orange juice to help absorption.

LookingAtYou oh really? That’s reassuring, I’ll carry on with it, maybe double up on it as it’s the only thing which doesn’t wreck my guts.

@LookingAtYou , you were lucky. My levels continued to drop on Spatone alone.

The Three Arrows one is what I'm using at the moment, it did used to be available on Amazon UK but I had to order the last lot from the US, so I got several bottles to make it more cost effective as I knew I tolerated it ok.

Another haem supplement I've used in the past was Optifer, which is available on Amazon.