Low ferritin

[goldendog]

Anyone else have chronic low ferritin? I have an autoimmune condition which causes my level to be constantly low. Unfortunately I can’t tolerate oral iron tablets, so have IV infusions.
The problem is that I feel half dead by the time I fall below the “normal” NHS ferritin level (ie under 10).
I’ve read a great deal online which suggests ferritin should be a minimum of 50.
Does anyone else struggle to get treatment if their levels are over 10 but under 50?
I spend half the year feeling exhausted at the moment simply because I can’t get the treatment I need.

Yes! My levels are 44 but I am always exhausted! I'm 25 with no children but have no energy 😞

My ferritin was 9 a month ago - I didn't get any treatment, just asked to have a repeat blood test which I'm having tomorrow. I'm hoping it's still low so they will actually give me some treatment. I've been feeling dizzy, lethargic and brain foggy since March.

Mine are always below 20 (usually 11-15) and GPs don't do anything and say it's normal! So frustrating.

Mine are always around the 11-12 mark and GPs say it’s within normal range but I disagree based on my symptoms

Sorry to hear there are others struggling with low ferritin too!
Has anyone managed to get treatment before falling below the rock bottom level of 10?

Mine was initially 5 and got 2 weeks of iron tabs, that was off a/e though.
Almost a year later it was 10 and because I was symptomatic my go prescribed 3 months worth. I felt better within weeks tbh. He also got me to do a poo sample to check for occult blood in case I was bleeding from my bowel.

Mine was 6. 😕 I still struggle but find spleen tablets from ancestral supplements online help.

You should demand treatment if your ferritin level is under 50 and you have fatigue...Here's some papers to show your GPs.

www.ncbi.nlm.nih.gov/pmc/articles/PMC3414597/
ebm.bmj.com/content/9/2/47

Can I ask what autoimmune condition causes persistently low ferritin? Mine is also always low, with no obvious cause.

Thanks for those links Greenup.

Like the op I can't tolerate iron tablets. I have also had trouble getting an IV infusion until not only has my ferritin dropped below 10, but also that my haemoglobin level is officially classed as anaemic.

Like many of you, I feel symptomatic under 50 and am so desperate that I have considered getting an infusion privately. There are a number of places that offer it, but the cost is huge (over £600 for consultation and treatment ). When I've enquired they haven't been very forthcoming about the sort of ferritin levels that they are happy to treat you at - they just want you to book a consultation. Has anyone resorted to the private route?

For those of you that can tolerate tablets, you can buy them over the counter at the pharmacist - you don't need a prescription. At ferritin levels in the teens I would have thought they would be happy to sell them to you.

I have low ferritin because of coeliac disease. My GP refuses to give me any iron tablets as it’s not under 10 but even at 20 I feel terrible. I just go to the chemist and buy ferrous fumerate tablets, it’s cheaper then buying it on prescription anyway.

Had my repeat blood test. In one month my ferritin has gone from 9 to 10..... GP didn't even speak to me - the receptionist just said to buy some over the counter iron tablets and have a repeat blood test in three months. They obviously aren't very bothered!

God that’s annoying

That is infuriating FeatherySquakington!
GP’s generally just don’t seem to understand (or care) how bad you feel with low ferritin. It’s a disgrace that so many people aren’t given the treatment they need to feel well.
In response to Eurochick, I have a condition similar to coeliac disease but it affects my stomach, so I can’t absorb iron/b12 very well. Don’t get me started on the struggle I have to get regular b12 jabs

@Helleborus
I too have felt so desperate that I looked into private iron infusions. In early March when I started to feel the exhaustion returning I made enquiries and was quoted £700 for a consultation and IV infusion. I was told that my ferritin should be kept over 100 and certainly not allowed to drop under 50. A far cry from the NHS treatment threshold!
Unfortunately it’s simply too expensive for me to pay for privately 2-3 times a year.

I feel quite angry that I can’t obtain the treatment I need to function.

Anyone know how low it can get before they insist on a transfusion? My daughter's is currently 5.

What else would ferritin come under on a blood test results? I'm anaemic and also don't tolerate iron tablets at all. I'm on Feroglobin liquid currently which doesn't seem to upset my stomach, and blood test in 3 months to see if it's helping.

@longtompot
Ferritin is a separate test from the full blood count. Ideally your GP should ask for iron studies, which includes ferritin, iron serum, transferrin etc. This shows iron deficiency before the levels are so low that you become anaemic.

@Roseau18
I don’t know whether you can actually insist on treatment? What do you do if you want treatment but your doctor doesn’t agree? Does anyone know?

My ferritin and folate levels were low and l began to get anaemic. After being diagnosed with Coeliac disease ( some GP's don't seem to think about this) l got better results.

@Frankley I suspect this is me. Since a gave birth in 2016 Iv been poorly with low ferritin and really low folate. Iv had a ttg iga tests that range between 0.5 and 0.8. So frustrating when I have every single coeliac symptom.