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

[AbsentmindedWoman]

I've tried and tried to understand, but seem to have some kind of mental block when it comes to understanding the complexities of iron especially the interactions with other deficiencies like low B12 and vitamin D.

But if anyone could help my dim brain make sense of this I'd be so grateful - my ferritin is always low, generally in the 30s and sometimes dipping to 20s.

My doctor advised some iron, which I got - but after taking them for just about a week got scared of taking more because another test (from a different doctor) came back showing slightly elevated hematocrit, and haemoglobin normal but on the high end of normal.

So if the ferritin which as far as I can understand is the iron store, is low, but the rest ok or high - does that kind of balance itself out somehow? Ie it doesn't matter in and of itself, as long as it's not affecting haemoglobin? And I don't need to be concerned with raising the ferritin?

@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).

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?

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.

@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 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.

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.

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.

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.

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.

@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.

"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!

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.

*Cannot eat your way out

I suppose the best approach for treating iron deficiency then is a combination of :

• Meat-eating diet, especially red meat and liver
• heme supplements (iron polypeptides) - these are not affected by coffee/tea/milk/other supplements
• non-heme supplements - my faves are ferrous bisglycinate or ferrous fumarate, although both of these gave me back supplements so I no longer take them. (+ 1000mg vitamin C)
• spatone (+ 1000mg vitamin C)
• regular monitoring either via GP or private testing such as thriva

Gave me bad side effects … sorry . Tired!!

Great tips @TiddleTaddleTat and I also think you need to find the cause (because often it’s not just iron you’re deficient in, it’s just the one that gets picked up on blood tests).

Treating iron deficiency is important, but it is usually a symptom of a bigger health issue. You don’t have low iron for no reason.

It took me years to realise this, because GPs don’t tell you!

@Truegreen yes that’s absolutely true, and in my case coeliac was the underlying cause . But going gluten free has not resolved the deficiency because I am still ‘overdrawn’ and losing blood every month so hard to get levels back up to where they should be. I think, like many women, I have been iron deficient all of my adult life. Post-pregnancy, too. I didn’t even take spatone when pregnant. So much unnecessary suffering.

I can really relate to that @TiddleTaddleTat

I’m resigned to having infusions every 3 years and taking a gentle daily multivitamin (well woman). My gut can’t cope with prescription iron tablets!

I'm now 31 weeks pregnant and was made to feel like I was stupid at the hospital for saying I was struggling with the symptoms of anemia when I only had low ferritin - think it was 11? Basically they had sent me a letter after my first lot of bloods saying 'you have anemia - get iron supplements from your doctor.' So i -obviously -assumed that meant I had anemia.... But apparently they send the same generic letter out for low ferritin levels as well and that doesn't mean you are actually anemic. Lazy approach to me, but Fair enough...

I then went on to tell the doctor that the reason I thought I might still be struggling with iron issues is that despite taking the prescibed iron supplements for 6 weeks I was still short of breath, dizzy, tired. I couldn't walk through a supermarket at snail pace without getting spotty vision and needing to sit down and felt it was getting worse... the doctor started to patronise me saying these are all very normal symptoms of pregnancy (this is my 2nd and I didn't have this the 1st time around) and that my blood pressure and oxygen levels were fine, and like they said, I only had low ferritin the last time they test, so no need to retest for anemia and not to worry.

Fast forward to my next midwife appointment 6 weeks later they take routine bloods, and what do you know, I'm actually anemic. Taking liquid iron supplements now and starting to (slowly) feel a little better, but reading this thread ... man I want to print it off and pin it to that doctors clipboard!! Why isn't this more commonly known, especially by a doctor specialising in pregnant women!

Thanks to everyone for sharing their experiences, it's made me realise I am not mad! 🙏

@Ilovepotato Your experience sounds remarkably similar! I would suggest you push for an infusion. It’s very common for women, especially in pregnancy to experience iron deficiency and the symptoms it brings. Then be ignored unless they get anaemic and that is wrong.

Wimmin’s problem innit?

I get symptoms when ferritin drops below 30. Mine are....

Breathlessness
Mind fog- difficulty processing info and memory loss
Dizziness and vertigo
Leg cramps/ restless legs
Heavy legs, worse in morning
Pain in Achilles’ tendon
Tinnitus after exercise
Thinning hair on head
Nails that are too weak to grow
Depression and/or anxiety
Insomnia
Heart palpitations

All of these disappear once the iron deficiency goes!

Achilles' tendon pain! Yes! Lying in bed and that's happened a few times! Super sore and a pain I've never experienced before. I'll be asking to be retested at next appointment in a week and if still low I'll push for infusion. Thank-you!

If anyone is constantly suffering from low iron, it’s worth asking to be tested for coeliac disease. Medical professionals don’t seem to test for it unless someone has irritable bowel symptoms but many people are coeliac without any issues with their bowels. I was dismissed as having nothing wrong with me for 13 years before I saw a GP whose son had coeliac, recognised my symptoms and tested me for it.

Yes @Covidxmas ! There are another 70 or so autoimmune diseases which also cause iron deficiency, so if it’s not Coeliac it could also be one of those.

GPs usually only treat the iron deficiency when it gets super low, not the cause. Dismissed because it’s a common problem among women and assumed to be heavy periods/ postnatal. But I have irregular light periods so always argued against that explanation.

I got lucky with a good GP who linked up PCOS, hypermobility, gut sensitivities and iron deficiency and tested me for autoimmune diseases (of which coeliac is one).

@Ilovepotato unfortunately NHS threshold for infusion is very high, you might need to go private.