Low ferritin

[Twoweekcruise]

I have very low ferritin levels and have had for some time now.
My ferritin is just 5.
I feel like crap most days.
The gp’s at my surgery don’t seem to take me seriously. They say it should only cause a bit of tiredness but when I look up the symptoms I have many of them (obviously tiredness but more exhaustion at times, I am weak and shaky, have low tolerance to exercise, tinnitus, breathlessness, dizziness especially when standing up from a crouching position, terrible anxiety and a sore tongue).
They prescribe ferrous fumerate or ferrous sulphate but they absolutely wreck my stomach as I have IBS. I have also tried many off the shelf ‘tummy friendly’ iron and they upset me too. The last gp told me that I have two choices, get my iron levels up and put up with a bad tummy or don’t get my levels up!!
I am on a FB support group for low ferritin and many on there have infusions at my level but a gp at my surgery said she wouldn’t refer me as in her words ‘infusions are far from a pleasant procedure’.
I have had enough, I feel like I’m wading through concrete.
I have a telephone gp consultation this week and want to insist something more is done as this has been going on for two years or more and I am fed up of feeling like crap.
BTW the source of my issues is because of very heavy periods caused by uterine polyps. I waited for 14 months to have them removed. They were removed 4 months ago and my periods are heavier than ever! I have another gynaecologist appointment at the end of the month when I will discuss having a uterine ablation which I hope in the long run will stop the periods but the waiting list could be up to another year.
Has anyone managed to raise their low ferritin and feel better? How did you do it?

cks.nice.org.uk/topics/anaemia-iron-deficiency/management/management/

Can you see another gp? Infusions might not be nice but your not having fun anyway are you?.

OP you have severe iron deficiency. Are you also anaemic? Has your GP run a FBC recently to check?

I also cannot tolerate oral iron and now have iron infusions every 6 months or so. The gastro team arrange for an infusion when my ferritin drops below 30 as at that stage you have absolute iron deficiency. I am not surprised you feel awful; I feel pretty bad around a ferritin of 25/30. I have not had any problems with iron infusions and many people who consider them dangerous are basing that on outdated info. There is of course a very small risk but at the first infusion I was given a “trial” for a few mins to see if I had any adverse reaction. The hospitals really are very careful. The huge benefit of an infusion v oral therapy is that you instantly have a full iron replacement. It takes me about 3/4 weeks to feel 100% again but that’s much quicker than struggling on with oral iron.

If your GP will not order the infusion I would suggest asking for a referral to haematology. Say that you have a long term chronic condition that adversely affects you and want to explore treatment options to manage your issue.

It’s not good enough for your GP to refuse treatment you clearly need.

Good luck.

I had a ferritin of 7 a few years ago and felt awful. Was v slow rising until I got a mirena in.

I'm pregnant (29 weeks) always terrible levels when pregnant. Three tablets a day just gave me terrible stomach. Consultant said the tablets don't absorb well, got me an infusion I had Friday. Not awful? No different to any other infusion. Have one next Friday too. Stomach much better. Waiting for it to kick in. Strongly ask for one again. X

Fluffycloudland77 Thank you, I will check that out and not it’s no fun at all.
Sickdog Ferritin is 5 and HB 9 and has been at those levels for quite some times 18 months +. I am so annoyed that no one is taking me seriously when I say that I feel crap. I am also under gastro (I’ve ongoing IBS issues) and gynae and they all know my levels yet no one is suggesting infusions, it is beyond frustrating. I have another (telephone 🙄) GP appointment on Wednesday and I am just going to have to make a fuss this time, fed up of being the nice guy and excepting what they say, just can’t keep feeling this crap anymore.
Erinrose82 it’s good to know that it’s safe enough to perform in pregnancy, that has put my mind at ease. The way the gp described it like it was a bit of a Russian Roulette situation!

I have low ferritin without anemia related to having Hashimoto's. It is a constant battle to get my ferritin up and even with oral supplements it has never gone above 30. If I take a break from the supplements (I take two iron pills daily), it drops like a rock.

I have asked for infusions as well and been refused because I am not anemic. When my ferritin goes below about 20, I get incredible pain and muscle aches, fatigue where I sleep 12-15+ hours a day, my hair falls out, and I feel like I have the flu. So I take iron and deal with the side effects just to keep it hovering above 20. I try and eat iron rich foods but that seems to have no effect.

Your periods will still be heavy because you are anemic. It’s a vicious circle. Been there had that.
You need an iron infusion. I’ve had them. They are by no means unpleasant - after I had a bit of a headache and a metallic taste in my mouth
I’ve had 4 in total. Afterwards it’s like I ping awake. My periods are so light it’s a revelation. I feel reborn - happier, energetic, hair stops falling out.
If you can insist and get one booked in I would. Or pay privately?

At 5, my GP would also not recommend an infusion. However if you can't tolerate oral iron supplements then it seems like there's no choice?
Yes, at a ferritin level of 5, you will feel very tired & weak.

9 for haemoglobin is just under the lower level; it's definitely your ferritin (iron stores) that are the concern.

I think you'll need to push for the GP to re-think.

Can you afford to go private? There’s a clinic in London that does infusions for a few hundred pounds.

In the mean time I managed to get my ferritin up from 25 to 50 with floradix and it is kind on the stomach.

I had very similar levels to you OP, also caused by heavy periods and I have severe IBS which makes the tablets intolerable. Do you also take omeprazole by any chance? It so, that also inhibits iron absorption.

In the summer I had a course of iron infusions (two a week apart) for the first time having battled with this for decades. It really wasn’t awful at all, I just sat on a drip for about half an hour and read a book. I was in and out in about an hour each time.

It wasn’t the magic, wow I feel amazing a few days later I had heard about and was hoping for but I am definitely far less tired and no longer breathless. I am slightly complicated as I also have a folate and vitamin D deficiency, which have very similar symptoms.

I am no longer anemic though and have the highest ferritin levels I have ever had (around 130-150 I think compared to 7 beforehand.

My Hb was about 8.4 beforehand I think and I asked the GP for an infusion. I went armed with facts and said I had been battling for years to get anywhere near a normal level and I just wanted to get to a normal level and then try and maintain it. I was quite surprised when she readily agreed. I had also looked up private infusions too and was prepared to pay the £8-900 required if necessary, I was that desperate (heart palpitations, breathlessness as well as extreme fatigue).

Good luck.

Eh? I've had multiple iron infusions for low ferritin and they've never been in the least unpleasant, and they also start working pretty quickly. It's the consequences of untreated low ferritin that are really unpleasant. I suspect your GP is just fobbing you off, presumably because an infusion costs more.

Be wary that some private. Clinics say the infusion is say £500 but you also have to pay for a consultation and blood tests privately which brings the cost to nearer £8-900. I looked at several clinics but obviously thankfully got it on the NHS.

Heavy periods, low iron/f and ibs. Are you sure you’re not coeliac? All symptoms. I was finally diagnosed when I repeatedly complained I could not get the (misdiagnosed) ibs under control.

What dosing regimen have you been trying? If it’s 2-3 tablets a day it may be worth discussing one a day or every other day. The GI side effects are essentially due to saturation of the absorption system so there’s more left in the GI tract to cause side effects. Some people find if they take less they respond much better, both in terms of iron absorption and GI side effects.

Great that most pp’s have had good experiences with iron infusions, but the GP does have a point - they can cause some pretty unpleasant acute reactions.

Was going to suggest coeliac disease too. The low iron, sore tongue and IBS is a hint.

You must feel ghastly OP, and exasperated. I had your prob - the only thing that worked was the Mirena (long term) and spatone in orange juice (every morning) which doesn't give you dodgy stomach.

I loathe those ailments where the cure makes you feel even iller than you do already, but some cures aren't that bad at all.

@Twoweekcruise I can not tolerate iron supplements as I have ulcerative colitis.

I get Ferracru (think that’s how it’s spelled) on prescription. GP hadn’t heard of it. It was my IBD nurse who advised it. Doesn’t upset your tummy/bowels at all and is an iron supplement. Ask for that x

Have you ever tried a haem iron supplement? I get awful cramps and diarrhoea from various other forms of iron - sulphate, fumerate, bisclycinate, gluconate. I've found haem iron to be free of side effects, although more expensive.

I had low ferritin, folate and haemoglobin. Turned out to be Coeliac disease as previous posters have suggested. Have you had the blood test for it?

Hi

I've had extremely low feratin levels for years and years and have been in tears to
The GP about how I was feeling. Finally after 7 years I was diagnosed with coeliac disease which of course effect the absorption of vitamins and minerals from food. My GP was still refusing a transfusion with feratin levels of 2.6. My coeliac consultant went slightly mad with the GP and I had a transfusion 5 weeks ago. I'm finally feeling more human again and my levels have improved.

The infusion itself is fine, just hooked up to a drip for around an hour no side effects nothing nasty at all, and this is coming from someone who hates cannulas. I'd be insisting to be referred and also maybe speak to your local CCG or pals if they still exist about the attitude your getting from
The GP. Don't give up.

There is also the iron supplement oral spray which you squirt into your mouth.

Thank you everyone. It is ridiculous how much of a battle it is becoming, I think having telephone consultations with the GPS doesn’t help. My hair is so thin now that I even now wear a hair topper, if only they could physically see me!
Catcrazy83, Allaboutyou222,Frankley I have had 2 blood tests and a gastroscope with biopsies, all came back clear of coeliacs 🤞I am very sensitive to gluten so have now cut it out of my diet.
Greybeardy I have tried all ways to take it, 2 x per day, 1 x per day, every other day etc but still awful, I have such a sensitive digestive system that I just limp by on Spatone. Even Floradix upsets me!
Supersimkin2 I didn’t get on with the mirena sadly, I am waiting for an ablation and just hoping and praying it won’t be long.
Workinghardeveryday Thankmyou, I will ask about that one.
Utini Is that available here in the U.K.? I’ve seen on some FB support groups heme iron mentioned one called Three Arrows but I can’t find it here.

@Twoweekcruise

Thank you everyone. It is ridiculous how much of a battle it is becoming, I think having telephone consultations with the GPS doesn’t help. My hair is so thin now that I even now wear a hair topper, if only they could physically see me! Catcrazy83, Allaboutyou222,Frankley I have had 2 blood tests and a gastroscope with biopsies, all came back clear of coeliacs 🤞I am very sensitive to gluten so have now cut it out of my diet. Greybeardy I have tried all ways to take it, 2 x per day, 1 x per day, every other day etc but still awful, I have such a sensitive digestive system that I just limp by on Spatone. Even Floradix upsets me! Supersimkin2 I didn’t get on with the mirena sadly, I am waiting for an ablation and just hoping and praying it won’t be long. Workinghardeveryday Thankmyou, I will ask about that one. Utini Is that available here in the U.K.? I’ve seen on some FB support groups heme iron mentioned one called Three Arrows but I can’t find it here.

You poor thing OP

It was the thinning hair that made me insist on being tested for low iron. I was also exhausted but just assume I was depressed or burnt out. Ferritin was 14 which isn’t as bad as your level but still not great.

Like you, the cause of mine was heavy periods. Luckily tranexamic acid made a huge difference to my periods. After 6 months on oral supplements my ferritin level was up to 94. I feel much less tired, brain fog was gone and my hair is growing back.

Sometimes I wonder if it gets fobbed off by GPs as it’s mostly a ‘female issue’ but it can make you feel horrendous,

I’ve just had an iron infusion and it was a complete non event! What do they mean “far from pleasant”?!! It’s just having a in drip for a while!
You must feel awful. I can’t take the tablets either. I had an infusion with much higher levels than you.
I guess if your GP won’t then you’ll have to see a private GP?

Go to your gp, explain about Feraccru (just got bottle out for spelling) tell them you are having it?!!

Good luck op, you can do this. Xxx