Ferritin level 6

[bobbleb]

My ferritin has been at 6 for a few months. HB lowest point of normal. I'm trying to increase it by taking iron but the iron gives me the most unbearable cramps and upset stomach.
I feel constantly unwell and fatigued. I'm currently on liquid iron but the side affects are just as bad.
I wonder what the threshold is for an infusion as each time I get my period I just feel horrendous.
Any wisdom or advice please?

It took a couple of years to go down due to very heavy periods. As soon as my periods stopped it was fine. I also took a supplement called bio herm which was recommended by a nutritionist and didn't give me stomach issues.

Check that you’ve not got low b12

@bobbleb I was anaemic for a long time despite taking iron. After several years of not getting on top of it, I was tested for and diagnosed with coeliac disease. It had been causing low Hb, ferritin, folate etc all that time. Maybe worth asking about. Good luck x

You are all really kind to reply. I think I am at breaking point with how poorly I feel in terms of exhaustion but guess I have got used to it. The insomnia is awful too.
I had not ever considered coeliac disease. I think GP will refer me for one but I will ask about these other things too.

My friend with low feretin got celiac diagnosis

When my feretin was low - i had benign polyps in my bowel
That were bleeding

Wise to consider asking nhs for a poop test // qfit test too

Tell them you dont just want the low feretin treated - you want to know the cause

They checked my stomach
With gastroscopy
For any ulcers / bleeds
It was ok

That's what I was like too. Chronically unwell and exhausted - it went on for so long it just became my norm. You just learn to live with it. Asking for a coeliac disease blood test initially sounds like a good idea. Since going GF I feel great and I look back on that time of my life and think - gosh how did I live like that!

I didn't realise how exhausted I had been until I had my infusions and was amazed by how much more energy I had. I was just so used to being tired all the time it felt normal to me.

Definitely get tested for coeliac disease, anaemia was the only symptom I had when I was diagnosed.

My QFIT test was normal. My ferritin is still 6. Have contacted a private provider as I feel too ill to keep waiting for the NHS to refer me. My HB is 121 which makes me over the threshold to be referred for an infusion.

For anyone who has had an infusion were you worried about the risk of anaphylaxis?

I was not worried as my feretin had been long time low
And the amount you are given etc depends on x y z
You are Also watched / monitored .

When my feretin was up at 252, i felt so good and had colour in my face and energy

Have u asked for tests
Re absorption / malabsorption

You can also ask NHS for gastroscopy
To check for stomach ulcer / bleed

You want to know the cause

Eating iron rich foods regularly helps.
Dried apricots
Strawberries
Blueberries
Wheatabix
Beef
Etc

Boots do a gentle iron water
Spa tone

Take it once daily with orange juice

I was worried about having some kind of reaction but they are very careful and you're never left alone. At my last infusion I kept getting pain and each time I complained about pain the nurse would check to make sure there was no swelling or discolouration or any other symptoms of issues.

No as others have said you're constantly supervised. It was great although not as fab as the blood transfusion I had a couple of months later, incredible difference!

I'd definitely get the periods sorted. I was having 2 heavy periods a month and my iron dropped to 10. I was exhausted all the time. The nurse attempted to fit a coil and failed so I reluctantly went back on the pill after 15 of being off it. I was scared as hormonal contraception never really agreed with me but I couldn't continue. I took them and felt like a different person within a few months. I now have a coil after being referred to the hospital for fitting and it's amazing.

Apparently the iron infusions are far safer now with a much lower risk of a reaction. The old style infusions had much higher rates of anaphylaxis and I get the impression that a lot of GPs aren't aware how much things have changed in recent years.

I was a bit worried before my first because I often experience side effects from medicines and am allergic to many things, however I've had several infusions with no reaction or side effects.

Thank you. I think that probably the private route is the only way at the moment. I will pursue that. It's about £700 though 😭

Do ask nhs to look for the cause ..

Do you have heavy periods?
Do you eat iron rich foods daily?
Do you have ibs ?

Hi, I noticed that you had commented on my thread also about ferritin. Honestly when I had my iron infusion, I was so scared about anaphylaxis but the nurses were brilliant. I mentioned that I was worried because I'm quite sensitive to lots of medication and they ran it really slowly and took my obs before and during the infusion. if there's anything strange at all, they will stop it immediately . It only lasted half an hour then they keep an eye on you for a bit longer . Apparently with the newer infusions they are less likely to cause a reaction .

Thank you. I think that I had a couple of years of extremely heavy periods, which are much less now. I think that I am sorting of living with the impact of that and cannot replace that time. I just cannot tolerate oral iron. I eat lots of iron rich food.

Thank you for sharing this experience which is reassuring. I think that I will see if I can be seen privately as think I will feel a lot better once my levels are topped up. I am in touch with a private clinic.