To ask if anyone has ever had low ferritin levels?

[ImaHogg]

I have suffered from anaemia on/off for years due to heavy periods. Over the last 5+ years I have developed uterine polyps which I have removed but they grow back (I’m 48 and probably in peri so my hormones are probably unbalanced), unfortunately these are making my periods heavier which is probably further pushing me into anaemia.
My test came back last September with HB of 9.9 and Ferritin of 5. GP put me on ferrous fumerate but as an IBS sufferer these cause such awful issues that I’ve had to rely on Spatone which isn’t helping much.
Last week my levels came back the same, gp says she doesn’t have anything else to offer other than the ferrous fumerate and to continue to take the Spatone until I get a hysteroscopy appointment with gynae (I’ve been waiting for this since October last year to have polyps removed again and this time insertion of a Mirena coil, but it’s been put off due to Covid!).
Has anyone had low ferritin levels? What were your symptoms and how did you get your levels to normal?
My symptoms are I am cold all the time, tiredness even after a good nights sleep, tired after climbing stairs, intolerance to exercise, anxious ALL the time, sore tongue, tinnitus, vision issues and just completely knackered and weak tbh.
I feel like crap every day but I’ve been anaemic for so long that I’m not even sure what it feels like to feel ‘normal’ so not sure if my symptoms are due to the low ferritin or not!

Did the doctor have you taking FF daily, probably 3 times a day? There now seems to be an understanding that it is more effective taken every other day. Speaking from experience, this reduces the symptoms hugely!

Is it worth just taking one every other day to try and boost you a bit?

Whitney168 no, no advice from the gp at all but thank you, I will try that, just a little apprehensive as they made my stomach awful.

Have you had your thyroid and B12 checked too?

If you can't tolerate oral iron then they can give you an iron infusion (drip)

Ask your GP to try liquid iron (not Spatone, but the full on Sodium Federate Oral Solution). My iron levels hit rock bottom and the ferrous fumerate tablets caused massive stomach problems, so my GP is trying liquid, to see whether this is better. So far it has been far gentler on my stomach, and I do feel less light headed, and out of breath, so hopefully working on iron levels (although I'll have to get a blood test in a few weeks to check).

I had to try a few different supplements before I found one that I could stand. The one I use now is called Ferrofast but I'm not in the UK so it might have a different name

I have to have infusions - feel great after. Unfortunately if you have digestive issues it makes it harder to absorb oral iron.
My symptoms are much the same plus I get lots of mouth ulcers.

DonGray no, I haven’t had those checked, I will ask about that.
HazeyJanell gp hasn’t even suggested those, I will definitely ask.
Gerla thanks, I’ll have a Google.
Yessun I would love iron infusions but my referral was returned by haematology 18 months ago!

Iron Transfusion worked wonders for me. I've had a couple and I've been much better since. I've still got slightly low iron levels, but my Ferritin levels are relatively stable.

I tolerate feroglobin liquid better. It causes me no issues with IBS and has other vitamins in too. It also seems to work quite quickly compared to other iron supplements. Hope you find something that works for you soon.

You can get florodix liquid iron, it contains a lot more iron than spatone. I find spatone helpful for maintaining levels but it does nothing to raise them if already low.

Here’s my two penny worth

You say you’ve got IBS aches and tinnitus, that’s almost certainly non serous gluten sensitivity, B12 deficiency ferritin deficiency and probably low folate due to malabsorption

The symptoms you have are all related to this and the deficiencies are related to your gut

Things your gp won’t tell you because they aren’t taught in training are that to absorb B12, Ferritin and folate you need adequate levels of all three, it’s the holy triad

You also need to have vitamin C in the mix to aid absorption

As a coeliac with a damaged gut I take gentle Iron, it’s absorbed further along in the gut and causes fewer issues and if my B12 levels drop I find my tinnitus returns

Definitely make sure to take vitamin C tablets or just a glass of orange juice to help absorption. Makes a big difference.

Same here, OP. In my case my low ferritin and anaemia was only detected because I went to the doctor's with stomach problems (possibly gluten intolerance or ibs). I was put on ferrous sulphate, which made my stomach problems worse, so I ditched them in favour of spatone.
I am 49 and also have had increasingly heavy periods for the last few years, which have probably caused the anaemia and low ferritin. Only difference with me is that I don't feel at all bad from the anaemia. I've no idea whether the spatone is helping or not, as I've had no further tests!

I was thinking maybe I should go back to the ferrous sulphate but alternate it with a day of spatone.

Thank you everyone, I will definitely look into those suggestions.
I do take the Spatone with OJ but think I need something stronger.
Tomnooktoldmetoo thank you for that. Gentle iron, is that ferrous bisglycinate?

That’s totally unacceptable to be left like that.

I got a blood transfusion after mine were really low!

Make an appointment to see another GP and insist on action

Yes, my Hgbn was down to 60 a few months ago (it's meant to be 120). My symptoms were breathlessness, chest pain and crippling fatigue. I had two iron infusions, investigations into potential bleeding (colonoscopy, gastroscopy) and am still on oral iron every day. After 3 months, my iron was still below normal so I'm still going. GP said it can take 6 months to return to normal after such bad anaemia. You have my sympathies OP, it's not fun and the side effects of the tablets are horrible. I think you should push for an iron transfusion as it is a very quick way of stabilising your haemoglobin.

Oh something the consultant in hospital told me was to reduce my intake of tea ( which was very high, many many cups a day) as this can hinder absorption of iron too...

I have very low ferritin as well due to extreme periods. I struggle to take ferrous fumerate. It I find that if I take it with my largest meal it does help with bowel problems. You really need to be on them 2-3x a day to get a treatment dose. Spatone really is not enough for you. Have you tried any mess to reduce me atrial bleeding. Tranexamic acid has reduced my bleeding by about 50% and doesn’t give any other side effects. I have fibroids which have been stable.

@tomnooktoldmetoo that's really interesting . I have been to the doctor's for low ferritin and terrible tinnitus and nobody ever told me they could be related.

Try Ferrous Sulphate. That might be a bit more gentle.

I'm on Ferrous Fumerate too and have IBS. I've been taking it for a few weeks now and dont get the symptoms.

You might to persist with the medication. Maybe even just take a lower dose.

Did you take it with vit C as you’ll absorb more and can a lower dose sometimes. From your symptoms have you had b12 and thyroid checked

I've got low ferritin and some neurological symptoms, I know restless legs can be a symptom, but I presume then it's something to do with the ferritin b12 link. I drink lots of tea though, especially at the moment when there's not much else to do, maybe I should cut down.

My GP was useless when I was anaemic with a ferritin level of 2. According to her my symptoms were due to being unfit and if I did more cardio exercise I wouldn’t be so breathless and my palpitations would stop .

Couldn’t tolerate the prescribed iron supplements so bought some Ferrograd which is a slow release tablet. I take it at night with orange juice and my levels are slowly coming up. It’s taken a long time but I’m starting to feel lots better.