Ferritin ALWAYS low but other iron tests ok or too high?

If you have very low iron stores, you cannot eat you’re way out of it. There will always be a cause, either it’s a diet issue (vegan/vege), gynae or gut.

Many people can’t get iron levels up enough with oral supplements, so an iron infusion is a good option if you can afford it.

"I'm another one that is baffled at how you're actually meant to eat enough iron daily. I know the RGA is 14mg for pre-menopausal women and it's actually 20mg in a lot of other countries. There's just no way I can manage that and I eat meat."

Exactly and people say to eat spinach. I'd have to eat a sackfull of it!

@Frankley exactly, this is one of the autoimmune diseases I mentioned. Coeliac is one of the most common. GPs are not well placed to spot symptoms and diagnose.

As PP's have mentioned, if you have a low ferritin do consider Coeliac disease. I had a low ferritin for years but none of the symptoms of Coeliac and didn't think of it. But as l got older l began to get anaemic and at last l had the blood test for it and then other tests, all positive. Ferritin level good since going gluten free.

GPS don't always seem to think of testing people for it.

Autoimmune disease includes conditions such as T1 diabetes, coeliac, graves, Hashimoto, lupus, psoriasis, arthritis, IBD, MS.

If you have a lot of health symptoms along with iron deficiency and a family history of any AI conditions, please push for testing. AI conditions affect a significant proportion of the population and people go undiagnosed.

If your ferritin is under 30 and you have symptoms, then you have severe iron deficiency and you would be best having an iron infusion rather than oral supplements. Plus you need to find out the cause.

GPs in general are very dismissive of iron deficiency and only react once you’re in the anaemic range (under 10). This is really bad and can do long term irreversible damage to your organs. Ideally our ferritin should be above 100.

After 10 years knocking around 10-25 ferritin, my NHS GP finally referred me to iron specialist and I received an iron infusion that’ll last 3 years. Unfortunately, it’s not available on the NHS unless you have cancer or confirmed bowel disease, it cost £770. This iron specialist was able to do tests (extra £100) when he diagnosed autoimmune disease. It explained ALL the random symptoms I’ve had over the years. I got more out of the 1 hour I spent with him, than I did in 300 consultations/tests with the NHS (which are all documented on NHS app).

The NHS like to treat symptoms when they get really bad not the cause, They are pretty rubbish at joining the dots ie. a symptom web approach.

Get yourself to a specialist, if you can pay it’ll be worth it.

For thriva you need to fill up a small vial, you make a prick in your finger and squeeze the blood out droplet by droplet. It’s exactly the same as the covid antibody tests that the government uses/d
If you make sure to follow the instructions - especially making sure you are well hydrated and keep your hand in very warm/hot water before the test you should get enough blood.

I'm interested in doing one of the home tests but can someone tell me if you just need a droplet of blood or if you have to fill a whole vial? I've tried wellbeing kits before where they ask you to fill up to a line and I just can't get my blood to flow enough so don't want to waste my money.

I've always had iron results on the low side which doctor has always said is in the normal range, but I'm experiencing a lot of symptoms and reading comments on here I think I need some more action.

@AbsentmindedWoman - LOL, I was a bit worried that I sounded stroppy, and didn't mean to... and then I thought you'd say that if COURSE you could do all this, whilst organising world peace, and then the rest of us would feel like under achievers

I'm so glad that that I've helped shit stir a bit, yes, go and about your GPs until they listen! If you're brave, I could find you at least one useful print out that you can handover.

To really cement your position as one of "those" Lady patients?

Good luck all, and let me know if you need any more info.

I'm currently waiting for a second iv iron. I had one in 2020 and it made a real difference for a while. My blood test last nov came back with hb 6 and ferritin 3 and I was referred for iv again. Still not had a date through though. I am so tired all the time.

Third vote for haemochromosis!

I have low ferritin, low b12, an absorption problem rather than dietary, anaemia and haemochromosis which I previously thought was a bit of a contradiction. The test for haemochromosis isn't part of start blood tests but it is just a blood test at the same time. Would be worth asking your GP to do one?

@gymbummy see Dr Klein at Cambridge iron clinic. 22 is classed as ‘severe iron deficiency’. Not cheap but he can diagnose and treat you. Couldn’t recommend more highly (I’ve been going to and fro GP for 2 decades and finally got a diagnosis and treatment when I saw him).

You need to find the cause of your iron deficiency. Most common causes are...

Autoimmune disease
Heavy periods and gynae issues
Vegan or vegetarian diet
Having children close together
Cancer

Lots of people on this thread are reporting issues to do with autoimmune disease, which causes iron deficiency. Eg the peeling gums! It’s basically where your body attacks itself, there are 70 conditions and women are at highest risk. It’s very common. You probably have other deficiency you don’t know about too as it’s all linked to the gut.

Please get yourself checked by an expert.

www.cambridgeironclinic.com/

I guess liver is a good source.
But the only way to raise your ferritin if you are iron deficient is by eating or more likely supplementing , more iron than you need it’s like having an overdrawn bank account. If you keep taking money out (to run essential bodily functions) your levels will remain low (and overdrawn) until they are topped up by a sustained and prolonged effort to raise your balance well in excess of what you actually need for basic functions.

@TiddleTaddleTat absolutely a decent form of iron that is actually tolerable makes so much difference. I think so many people stop taking their supplements because the side effects of the standard iron tablets are so unpleasant.

I'm another one that is baffled at how you're actually meant to eat enough iron daily. I know the RGA is 14mg for pre-menopausal women and it's actually 20mg in a lot of other countries. There's just no way I can manage that and I eat meat.

I am frustrated reading these comments. A ferritin level of 2 and no treatment !!!
I really encourage posters to do their own research, there is so much out there if you look for it.
The most commonly prescribed iron supplements have dreadful side effects and so people often stop taking them. Then they think they don’t work!
I buy heme supplements from the USA as they are impossible to source here. After a few days of those plus 2 spatone a day I am seeing the tinnitus and anxiety reduce. I have much more energy. It’s extraordinary really (although not actually - when you realise iron deficiency literally puts your body in starvation mode). We musnt accept it!!
I also use thriva to monitor my iron levels.

@BulbasaurusRex sure, they're called Thriva.

Did had low,ferritin which was dismissed as due to being veggie and heavy periods. Turned out she had coeliac disease. Her ferritin has improved since going gluten-free.

@Scianel could you share which company you get your finger prick tests through? I had some tests through the doctor and a nutritionist a couple of years ago and would like to check where I am now, without the faff of dealing with the doctor again!

"You don’t get ferritin as part of a full blood count so do insist to your GP that they test this as well."

Cross posted there.

Absent, I stopped being a strict vegetarian a few years ago, but I can still only eat meat in certain types of food. I think it's been almost a year since I had any!
I've been tracking my food intake with My Fitness Pal and cooking from scratch more than ever and I can see that I never get anywhere near the amount of iron I need (except through my multivit).

I was tested for ferritin many years ago. It was 40, which my doctor said was fine, but I'm starting to think seeing the optimal numbers mentioned here.
I also really suffered the last time I gave blood. I got a blood test afterwards, but it didn't include ferritin.

There’s a disorder called iron deficiency without anaemia which is scantily researched (mostly affects women).

www.rcpjournals.org/content/clinmedicine/21/2/107

I’ve always had low iron and normal haemoglobin since a teenager, probably due to heavy periods. A few years ago when doing IVF tests they noted my ferritin was 22 and I spent six months trying to raise it with strong iron supplements and eventually got it to 70.

A number of annoying issues (nocturnal foot cramps, twitching eyelid) disappeared once my ferritin rose and during pregnancy they’ve returned as my iron stores drop - still not anaemic though!

You don’t get ferritin as part of a full blood count so do insist to your GP that they test this as well.