Low Ferritin? Feel horrendous!

[Emiliex1o]

Hi all,

Long story short, I’ve felt really quite unwell since I had my little girl 2.5 years ago.

Absolute pure exhaustion, aching joints, body feels so heavy, brain fog, dizziness, very low mood, hair constantly falls out and is in the worst condition I’ve ever known it to be, breathless on any exertion.

I have been to the doctor countless times over this period of time, not to be told I’m only ‘slightly anaemic’ and to take iron supplements, which to be honest, don’t make a blind bit of difference.

Anyway, I’ve had a proper look at my most recent bloods and my ferritin is at 15, which I’ve also read is pretty dire. My inflammation markers are way over what they should be, but my coeliac test was negative.

I explain how I feel to my husband as being like I’m dying a slow death - that probably sounds quite dramatic, but I feel like I’ve just slowly gotten worse and worse.

I have another appointment on Friday with my doctor and I’m worried he won’t take me seriously (yet again). AIBU to also ask to be signed off until I can get this somewhat sorted and feeling remotely normal? It’s at the point where it’s affecting my work because I’m so dizzy/spaced out and I’m terrified of driving because of the same reason.

Also, any advice for them to actually listen to you?!

After you've had the transfusion you will feel amazing so the sooner the better. I can't take time off work as NHS but I'd keep falling asleep at work and everyone kept asking me if I was with it. I was going to bed as soon as I got home.
They recommend starting on iron pills and keep taking it with the transfusion until your results come back normal. My ferritin levels went through the roof afterwards.
Some of us are just more prone to this than others.

I was feeling like this and I'm on the following after an absolutely pointless visit to the GP last year.
Contraceptive pill
Fish oils omega-3 six and nine
Magnesium i supplement
Kefir for vitamin absorption in the gut
Cbd oil.
I'm assuming I'm perimenopausal, but all of these supplements mean I have normal energy levels. I work 6 days a week and have 3 dc so full on.

I did take a week off work in the end, and had the infusion in that time, it was life changing as the other poster said and I felt better in 1-2 weeks (which could also have been because I went GF immediately as well for the celiac)

I'm also coeliac 😃

Praying for a transfusion now! 🙏🏻

Your periods are bad because you are anemic. It’s a vicious cycle that is making you more anemic. I don’t know if you can get this on rhe NHS but you must (if you can) insist on an iron infusion or pay to go private for one.
Having had this problem for a long time it was the only thing that helped me. You will feel brand new a few days after the infusion.

I had this.

GP was absolutely useless even when I was so breathless I couldn't eat without gasping, and was the pain in my joints was so bad I couldn't sleep at night. They did not seem to think low Ferritin was a big deal and just prescribed iron tablets.

I had to go off sick from work and begged the GP for an iron infusion and was lucky enough to be referred. By the time I was seen at the hospital my ferritin was 5. I had 2 iron infusions and my symptoms were all resolved! The haematologist said that Ferritin needs to be above 100 for good health really. They referred me to gynae and I take the pill so that I no longer bleed.

Have you had a faecal calprotectin test? Your symptoms sound exactly like mine and I was eventually (after years of being fobbed off) diagnosed with ulcerative colitis. Push for a gastroenterology referral.

@spiderlight yes I ended up having one last year, but again, came back negative - I was hoping that might be the jackpot ticket, but no such luck!

@BinBadger this sounds just like me! I was actually looking the other day about the pill just to stop me bleeding because I’m on the floor post-period, every single month. It’s like the life just drains out of me 😩

OP do you have your thyroid results to hand? I am thinking this really does sound like your thyroid's struggling, due to all the related other deficiencies, breathlessness, endless fatigue etc. 'Normal' is a very big ballpark for thyroid disease, much of it far below optimal.

It sounds most likely to be your periods causing it. You are losing haemoglobin with every period. That’s probably why the iron tablets aren’t helping. Have you tried transexamic acid to reduce period blood loss? Ibuprofen taken regularly can also help.

Anaemia itself can cause breathlessness and even heart symptoms.

I had a ferritin of 5 and ended up having multiple blood transfusions and iron iv. At some point it isn’t something you can push through any more - I lost consciousness and had to go to hospital in an ambulance.

Without trying to scare you, you might only be one period away from that. You probably don’t have time to build up ferritin through supplementation, which takes ages. An iron iv can replace iron much faster. The NHS don’t take low ferritin very seriously until your haemoglobin drops and then it becomes an emergency.

Hi OP, I'm sorry you have this. I wonder if anyone could advise me also please. My ferritin was 6 amd this is the 5th time over tbe last 5 years that it's been as low as this. I struggle to take the iron tablets as they are awful on my stomach.
Those of you who have had iron infusions- is that just for low ferritin? Did you need any other abnormal bloods? My folate is also low but haemoglobin normal (was low for a short period).

Mine went down to 8 when I was pregnant with a toddler and I felt horrendous. Ferrous fumerate or sulphate will help. Doctor should take it seriously.

How long were you taking iron for? It takes a decent amount of time and a big dose to get it up
take it every other day with 1000mg of vitamin c (I get the fizzy ones and down all my vitamins with it)

My ferritin was 4 in my third trimester and I had to fight several health professionals, including a consultant, to give me an iron transfusion. Despite yours being 15, if you feel the way you feel and have given iron tablets a good go (they’ll want you on them for at least 6 months) then this is the time to really advocate for yourself. As a healthcare professional myself, I know that using key phrases like ‘this is affecting my ability to complete day to day tasks without significant help from my husband’, ‘I am struggling to fulfil my duties as a parent / in my job’ etc. are difficult for them to ignore, especially as they should be documenting your account in their clinical notes.
It’s so difficult because if you’ve not experienced this before, no one can imagine how severe the symptoms are.
After I had my infusion I was told by my midwife that the real reason the infusion wasn’t offered readily to me was the (small) chance of an allergic reaction (I’d imagine cost factors in though!) This was a risk I was willing to take though as I felt so dreadful and the slightest sign of a reaction and the infusion is immediately stopped.

They need to be able to offer you alternative options if the tablets aren’t working. Maybe
go in and show you’ve done some research. If that fails, a line I had up my sleeve if needed was ‘are you going to treat the numbers on the page or the person sitting in front of you?’
Good luck and I hope you start feeling more human soon x

Can anyone recommend a super-strength, over the counter (or Amazon) iron tablet please?

@SquadGoals75 Iron biglycinate is easier on the stomach and better absorbed than ferrous fumarate. So you don’t need as much of it to absorb the same amount of iron.

@TreeCake
I was told that haemoglobin had to be below average for an iron infusion and below 80 for a blood transfusion. But if you have tried supplements and they aren’t working/ you can’t tolerate them I think there is some flexibility.

I buy ferrous fumerate as my stomach is fine with it, usually from an online chemist

My ferritin is currently 7, haemaglonin 10 and I do feel tired but I don’t feel as bad as you described.
Tell your doctor you are worried about causing an accident.

My teen daughter has had issues with low ferritin for years (her first period ended up in a blood transfusion) and it makes her feel terrible. She also has low B12 (on injections now), low folate, low vitamin D and then lots of other things that are too low / too high. At her worst her ferritin was 8 and she looked like a ghost (despite being mixed race). It’s been a huge battle to get the docs to take it seriously, and we still have no answers as to why.

You need an iron infusion. You also need heme iron which is iron from animals. It's hard to buy in the UK. I would recommend the iron protocol on Facebook, there is a UK version too. I would read the NICE guidelines on the treatment of anaemia to check you have had everything done you're entitled to. Your heavy periods for example should have been addressed in terms of treatment. Also Google ferritin and royal college of midwifery. They actually seem to care about ferritin levels. Yours would be considered low by this organisation. I know you shouldn't have to lie but it might be worth suggesting to the doctor you want another child but given your current health it wouldn't be possible.

I hope you can get it sorted.

It does sound like there's something else going on op so but I wasow iron. My level was 7 and I felt horrendous. I wasn't coping in life at all and they out me on ferrous fumarate tablets but a crazy high dose. 420 mg a day. I worked up to tolerating these levels. It was agony on my stomach to start with but the Dr said I need to take it seriously so I persevered. I take them at night with orange juice and I'm ok now. Just really need the loo when I wake up! I make sure I have a very high fibre diet.

Mine is solely due to menhorragia (horrendous flooding periods). I take mefenamic acid for my periods which helps a bit but isn't a cure! Dr suggested the coil but I looked into it and I just don't want it.

A year on fro starting the tablets and sticking with them I feel much much better. More energy, more colour, no breathlessness. I am still "only" at 47! Iron levels but that's good for me and I'm functioning/coping well.

just wanted to say thank you for all your messages!

I have my appointment tomorrow so hoping they will take me more seriously!

I had a similar issue when pregnant as my levels dropped though but were still ‘on the border’ and I felt HORRENDOUS! But thankfully the midwife did take me seriously.

I’ve got my hands on some Iron Bisglycinate so hoping that will help too.

Will update once I’ve seen the doctor tomorrow!

@AlteredStater is that the TSH?

My TSH Serum result was 1.88 miu/L, if that makes any sense whatsoever! 😅