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

@gymbummy where in the sputheast are ypu? I'm also south east. Suffering with low ferritin and other things and awful symptoms:( drs don't care

A lot of people here describe really rubbish experiences- but don’t lump the whole NHS and all GPs together please!

All GPs I know (and work with) would automatically check coeliac antibodies and take a decent dietary/ lifestyle/ family/ autoimmune history… and not be dismissive.

Pushed for time, over stressed, under resourced and having a minor nervous breakdown trying to keep everyone ‘safe’ within the system we are working but not dismissive.

In my area we have an excellent NHS iron deficiency clinic: OP maybe worth checking in your area? Here it’s called iron deficiency management service- I’ve attached a link (openly available online) which cites criteria. May not be similar elsewhere but similarly your GP may not be aware IF one exists.

Re iron infusions- in the NHS the are absolutely available- but largely for people who really cannot tolerate oral supplements. Also not to supplement lifestyle choices re diet, not taking supplements for various reasons etc.

Any iron supplement should always be taken with some vitamin C: vastly increases the absolute across the gut. But meat is indeed the most freely and quickly available dietary source for your body to use (as best I know anyway).

Anytime I have referred to this service it’s been exemplary- not only sticking the bandaid on but looking into the complexities of the iron profile and seeking an explanation.

nssg-test.oxford-haematology.org.uk/documents/15/how-to-refer-to-the-iron-deficiency-management-service-info-for-gps_L95xP4v.pdf

@gymbummy hey there! How are you
now ? Has anything helped
you? Xx

@Greeceisthebest hi there :) just wondering how long it takes you for you to
feel better ? Xx

@rifling please do not live like this, you need to get to a specialist. Insist your GP refers you. Unfortunately you will likely have to pay and it will be c.£1000 to get an iron infusion and tests. I visited the Cambridge Iron Clinic. You could always email for free advice? You could also be B12 deficient.

Testing for coeliac is not enough- it could be another intestinal issue or autoimmune disease.

Please don’t leave it and put up with it!

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
I have all of those. I have been trying to raise my ferritin for at least 5 years but it has never got over 18. I have lost half my hair. My doctor tested me for coeliac disease and I don't have it. No other tests were offered. I'm not vegetarian and don't have heavy periods so I'm not sure what else to do! It's frustrating that so many of this have been told that ferritin doesn't matter!

But as some people cannot take high doses - plus the risk of iron overload - you need professional advice about the right amount to take for your circumstances and body weight. Taking too much iron is also very dangerous.

Another part of the puzzle is that for some reason, as ferritin numbers get lower, women often experience heavier periods. Yes, heavier - so losing even more of the blood that they can barely replace from their ferritin stores.
It can be a vicious cycle once the ferritin gets low. You lose more blood, and it’s even more difficult to climb out of the iron deficiency.
Iron protocol Facebook group has info on dosage and lots of links to clinical research, if that’s your bag. Essentially you need to take quite high doses of iron in order to overcome an iron deficiency, or have an infusion.

Yes we have liquid iron but the one I have tasted vile. My daughters teenage years are being ruined by this, she’s exhausted all the time, pale as a ghost some evenings (and she’s of mixed heritage so clearly not meant to be that pale). She’s dizzy, so tired, so many symptoms. I wonder if a private doctor would give a child an iron infusion? I’m happy to pay. See what the pead says in 2wks time I guess. Her irons been too high also so don’t want to make things worse

[quote Greeceisthebest]@Ilovepotato unfortunately NHS threshold for infusion is very high, you might need to go private.[/quote]
I've had to get privates tests done before so that's not surprising. I have an undiagnosed autoimmune disease (undifferentiated so they call it) maybe I'll kill two birds with one stone!

My 13yr old daughter has this issue. She had a horrendous first period, ending in 28 days of heavy bleeding and 2 pints of blood. In the last 18 months her irons been too high (HB), too low, now her ferritin is too low and been prescribed iron. She’s got a mental block about swallowing iron, so trying to find a nice tasting one. We did have one and it ran out and now had a bad tasting one. She see‘s a paediatrician next month finally, after 7 months of waiting and one cancellation

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

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).

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.

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.

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!

@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!

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! 🙏

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!

@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.

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!

Gave me bad side effects … sorry . Tired!!

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

*Cannot eat your way out