Low Ferritin

[StarInTheSky2]

Hi All,

Feeling really low at the moment and would be nice to hear from people that have been through the same.

I have had iron deficiency for over 10 years now. Before I had children (3&4) I got through it probably because I was young etc but after I've had children I've felt horrific. Tablets have always been given to me by GP but my ferritin never goes up by 3-4 on a 3 month course of tablets.

In September 2023 I went private and got an iron infusion because my GP wasn't helping me despite my ferritin being 4 and previously never going higher than 6. After the infusion my ferritin went upto 90 but now has come back down to 32 and I feel like I'm dying and that's no exaggeration. I can't remember being this symptomatic before but I have zero energy, headaches, body aches, eye pain and also feel like my hearing is going as well as very loud tinnitus. If I could go private again then I would but I don't have that kind of money at the moment.

I just really don't know what to do and it's also really affecting my mental health now too. I'm sleeping in the day for an hour or two and then ready for bed at 7pm again. Vitamin d and b12 are good.

Any advice would be greatly appreciated.

Are your periods heavy?

Yes periods are very heavy for the first 3 days like gushing and lots of massive clots. My periods have always been very heavy and was diagnosed with PCOS about 8 years ago but nothing has ever been done after that. Only ferrous fumerate tablets given every time although it makes no difference and upsets my stomach.

I literally cannot function at the moment and am laying down/sleeping most of the day.

Have they checked for coeliac disease?

I live with ferritin in single numbers. I have regular infusions and blood transfusions as needed but only when my Hb drops. It makes you feel crap.
The only time I felt the way you're describing my Hb was at 3 (or 30) and I was immediately admitted for several units of blood. I think you need more exploration if your Hb is ok.

It's awful op I am exactly the same and Dr is no use. I am lying in settee with headache and feeling so low 3rd day of period.

I have had to accept every month I will be ill and gee a migraine and feel rubbish when it is my period.

I try to counteract it by taking regular ferrous sulfate but doesn't work

Dr's don't really care or don't see an issue with it, just have to get on with it

I'm exactly the same as you OP. Ferritin sits at around 4 unless I have an infusion, which I'm finding lasts around nine months. I've had several now over the past few years.

The (private) doctor at the iron clinic says that the cycle will continue until menopause until I fix my heavy periods. I'm going to try the Mirena - initially I wasn't keen but I can't carry on like this.

And like PP my regular GP could not be less interested.

Have you tried mirena to stop the periods? I had to do that to get iron up

The other thing I'd suggest is maybe checking out the Iron Protocol Facebook group. Taking iron supplements isn't as simple as just knocking them back - unless you are taking them the right way (high enough dose, with a high dose of vitamin C - not just a glass of juice, avoiding dairy, tannins etc) they won't be effective.

Can I ask how much was it going private please?

I suffer so much but not enough for Dr's to do anything about it on nhs.

I would also like testing properly for coeliac but they wouldn't do that either

This is also very good advice.

It's not cheap I'm afraid, around £900 at my clinic, although I think you may be able to find it for around £750 depending on where you live.

That is absolutely shocking that they won't even test for coeliac, that seems a lack of even a basic standard of care.

You could also try a different formulation of iron - I think ferrous fumate is one of the less tolerated ones.

Tranexamic acid to lighten your periods might be another option? Not sure if it helps with PCOS.

I have tried taking the tablets with vitamin c and not taking with dairy and caffeine but no difference.

I had the mirena coil fitted for 6 months and bled the whole 6 months which is when it got so bad and then had to have a private infusion because GP still told me to take tablets.

I really don't know what else there is I can do. I can't afford to go private again. I have been to the GP today who again gave me tablets even though I cried and said they don't work and have never worked in the 10 years I've taken them.

Nope

Yes , because I run my own business too if I can't answer the phone after putting an email consult in, which is very rare, they won't book me an appointment, so least 3 tomes I've tried to get an app but have been with clients, couldn't answer the phone.

I've given up for now, I am also prediabetic so just trying to eat really clean and healthily and stay ontop of supplemenra . However, my time of the month absolutely floors me. Dizziness, nausea, blurred vision, constant headaches or full-blown migraine

It seems so many women suffer like this, I see posts here weekly of same ailments.

If it was men it would be sorted. Most men even slightly in low ferritin range just get iron infusions from my experience.

It's really hard to get through to my Dr's and when I do I just feel fobbed off.

Oh no, it's so bad isn't it.

I don't know how I feel worse now that my ferritin is 32 though than when it was 4? My HB, B12 and vitamin D are all on the higher end.

What was their response when you cried and said they don't work op?

It's so frustrating, healthy range of ferritin is 100... to be below 10 should be something they fix as it makes people so poorly.

It's a disgrace really so many of us suffer like this.

When I cried the GP told me to try and take the tablets again with more orange juice although I did also say I have been taking them with orange juice and vitamin c tablet too. She just wanted to get me out of there.

Awful that it was a woman gp too op. You're not alone but doesn't make it any easier.

I take 3 x a day on empty stomach, with vitamin c tablets. I did feel a lot better but had do it regularly and religiously.

Also drinking enough water, 2 litres a day
Supposedly blood volume can affect too.

Also, making sure to take on morning,and afternoon but not evening. Hope this helps.

I sympathise. I have been trying to raise mine for about ten years too. It never goes over 20 and this is rare! Doctors just dont seem to care about ferritin despite the awful symptoms. I am finding it increasingly hard to work and the tinnitus is now off the scale which I am sure is related. It is just awful.

It's awful to hear so many of us suffer.

I hope it gets better for you.

What needs to change I wonder for GP s to help

I dont think that doctors actually know much about it. For example, I went to the doctor about the tinnitus (always had it but it has ramped up a lot) and she said it wasnt a symptom of low ferritin and sent me for a hearing test. Online it is often mentioned as a symptom though!

Totally sympathise with you OP. My ferritin was 4 last time I had it checked. Due for new bloods very soon.

I've finally gone to a GP who is also going to do a blood test to check for coeliac markers.

It's horrible, I can barely get round the supermarket without feeling like I'm about to pass out.

I don't get what it means when iron is low but HB is on the normal side? Does that mean you're NOT anaemic?

It means you have iron deficiency anemia.

Which is different from anemia.