Ferritin level of 9, GP not concerned, but I feel awful

[cutefluffyunicorn]

I recently had bloods done after contacting GP about experiencing extreme dizziness and fast heart rate when standing up. Bloods were all mostly OK. I'm not anaemic as haemoglobon was fine. Only real abrnomrality was a ferriting level of 9. reference range from the lab was 10-291, so GP described it "borderline" rather than abnormal result. BUT from my own research it suggests that this is actually really low, and you can get symptoms, even without anaemia, when levels are really less than 50.
I am jsut recovering from a severe depressive epsiode , but although my mood is now much better I am expereincing a lot of physical health symptoms inluding lots of dizziness, tiring more easily, overall fatigue, brain fog, thinning hair which just wont grow, palpitations and excessively fast heart rate with any sort of activity (for example vacuuming the lounge the other day sent my HR to 130 and left me breathless and dizzy) I was previously fairly fit, running 5- 10K fairly regularly so I definitely feel something is off.
I did manage to pursuade GP to (reluctantly)prescribe some ferrous sulphate but there are no plans to recheck bloods or follow up at all.

Any expereince of low ferritin without anamia? Did it make you feel awful? What dose of ferrous sulphate (or other) did you take? How long did it take to levels to rise and for you to feel better? Should I push for GP to recheck bloods at some point to see if improved?

Thanks for any advice

IV iron is synthetic, it's not precious blood for accidents etc

Hypophosphatemia is a known possible side effect of iron infusions but it tends to occur within days/weeks, not hours, so where you have the infusion wouldn't impact that.

I had hypophosphatemia post my first iron infusion and it took 3 weeks to pick it up on blood tests.

I've had repeat iron infusions for low Ferritin with mild anaemia.

It's a synthetic drug they Mo's with an IV drip to give - it deprived no one of anything.

Oh. My friend had a blood transfusion for anaemia but she's anorexic so maybe that's why. Sorry if I got it wrong.

yes, thats a fair point.

Going to try my luck with the GP again this week and see how far I get!

Apart from obviously wanting to feel better ASAP, I am also concenred at the lack of clear cause for the low ferrtiin, so would ideally like to address that as well.

Now, as long as I can successfully navigate the ridiculous automated GP tiraging system I will let you all know how I get on!!

I had a blood transfusion before an iron transfusion too. My hb was very low so they gave me a blood infusion to give it an instant boost. Then an iron transfusion to raise up my ferritin.

I think it’s possibly an argument for earlier treatment. My GP requested an iron transfusion for me but hospital said try iron tablets first. Then a week later I’m being admitted for a blood transfusion first as I was feeling even worse and numbers had dropped. Had I had an infusion the week before it could of been done as an outpatient instead I was admitted for three days.

@cutefluffyunicorn just to reassure you, the place is run by a doctor and a nurse administers the iron and watches you the whole time.

@prawn100 I've booked one for the weekend. 😬

I can't keep feeling like this, I took one iron tablet the other night and it made me feel so sick it was horrible. Even when taking on a full stomach. Nothing helps!

Good luck with GP @cutefluffyunicorn I've also left a note in our GP system for someone to get back to me!

@B2B25 great! Some people just can't tolerate the tablets, my ferritin actually went down when taking them!

I do find a daily smoothie with 2 blocks of frozen spinach does help maintain after the infusion

had some success!

Managed to get an appointment with a different GP. He was very thorough. Full history and examination. Has now referred for lots of further testing! will be having:

More bloods including coeliac screen (although only been eating gluten again for 2 1/2 weeks so may not be that helpful?)
24 hr ecg (due to dizziness)
ref for tilt table testing
given me a FIT test, will then consider ref to GI depending on result
is reviewing me after bloods and FIT test results to discuss next steps.

will keep on with the tablets for now till testing all done, then will see and may consider infusion at that point if all else is normal.

Glad you managed to see someone more thorough!

So happy for you. Having dich low ferritin is awful. Whqt is a fit test?

Similar as you. Felt like the walking dead. Could barely put one for in front of the other. Ended up paying for an iron and folate infusion( that was non existent for some reason), was only a couple of days ago and I'm really tired as a result which I was warned would be the case but I'm hoping for great things. Iron tablets and I aren't friends and I can't wait ages for levels to slowly build up. It's rubbish you aren't being taken seriously, just keep progressing is the only thing I can suggest. Take your printouts with you.

FIT = faecal immunochemical test - basically a stool sample that is then tested for traces ammounts of bood. It is mainly to rule out bowel cancer. (whilst I think this is v unlikely in my case, it can be a cause of low ferritin so I'm glad they will be checking)

I'm on route for my iron infusion in Nelson on @prawn100 recommendation! Had to rearrange last week as childcare fell through.

How are you feeling @cutefluffyunicorn

oooh, hope it went ok. Please let us know how you get on.
Im still having various further investigations....sloooooowly!!
FIT test was negative so thats a relief. Seems I have low ferritin, folate and b12 so Im thinking some type of malabsorption going on. Got further GP app week after next to look at latest results of further blood tests. If that doesnt lead to any further progress think I will go ahead and book an infusion as I'm very fed up of feeling so awful tbh 😔

thank you. Hope you are now noticing some improvements.
Ive just compiled a baig document with various bits from NICE guidelines etc to give to GP at next appointment. Fingers crossed!

Mines been 9 for years. I drag myself through life. GP couldn't care less

My ferritin is 21 atm. I feel awful. Terrible brain fog, fast heartbeat, crushing fatigue needing daily nap, hair falling out in handfuls. I'm on ferrous sulphate now.

You might need some digestive exploration, I had a colonoscopy and endoscopy, which revealed I have gastritis. This is what causes my low ferritin. There's usually a cause.

My ferritin level was 10 last year. I had three months of high dose supplements twice a day, then 6 weeks without them before a retest as the GP wanted to see what happened without them, and my level was then 22 last month. I haven’t seen the GP again but have been told by a nurse this is normal so no more supplements will be prescribed, but I still feel really tired.

I can buy supplements myself but I’m worried that might artificially mask an underlying cause, thus the GP wanting to see what happened to my levels without them. The trouble is they didn’t test my levels at the end of the course, so we’ve no idea if they went up higher and dropped to 22 after 6 weeks or whether they only went up to 22 after three months of supplements and have stayed there!

Palpitations were one of my symptoms, which went while I was on the supplements but I’ve started to get them again.

that sounds awful. You can buy ferrous sulphate or ferrous fumerate quite cheaply without prescription. would be worth trying.

yes, that is what I am going to be asking for next I think.

I would consider going back to GP and asking for investigations.
It would also be worth pointing out that 22 is not normal, but in fact is within the range of confirmed iron deficicency according to NICE:

• In all people, a serum ferritin level of less than 30 micrograms/L confirms a diagnosis of iron deficiency.

See more info from NICE guidelines here: https://cks.nice.org.uk/topics/anaemia-iron-deficiency/diagnosis/investigations/

It seems there are a lot of people struggling with this issue, and that generally GPs are fairly poor at appropriately addressing it. Do NOT be fobbed off by your GP telling you that iron deficiency does not matter if you dont have anaemia (low HB) This is NOT true.

I have been doing a lot of research to arm myself with evidence ahead of my next GP appointment and thought it may be useful to share some useful info here for any others in the same situaiton.

I would say, if you have low ferritin (and NICE define iron deficicency as ferritin under 30, although ideally you want to be aimin for 70-100 for optimum functioning) then you need to be proactive in getting treatment. If you dont have an identified cause (eg heavy periods) then I would also push for further investigations to identify a cause.(eg looking for causes of malabsorption, ruling out more serious causes of innternal bleeding eg FIT test, possible gastro referral etc) If you have low ferritin, but your haemoglobin level is not low then you are technically not anaemic. Drs may use this fact to tell you that therefore you shouldnt have symptoms. This is not true. Iron deficiency without anaemia can cause signifcant symptoms and stll needs treating (see papaer below for example of evidence) I would suggest also getting you folate, b12 and Vit d checked if you can.

resources which may be helpful to share with your GP:

Iron deficeincy without anaemia: a diagnosis that matters PMC
Very useful evidence to share with those GPs that claim that iron deficciency without anaemia doesnt matter!

Iron, neuro-biovailability and depression
One of the recent papers coming out discussing the link between iron deficiency and depression. Interesting read for those with iron deficicency and symptoms of low mood. This is a growing area of interest in research and clincial practice.

British Society of Gastroenterology guidelines for the management of iron deficiency anaemia in adults
This guideline is for iron deficiency anaemia, but some of the info is applicable to iron deficicency without anaemia too. See particularly pages 11-14 for info on various options of iron replacement therapies.

NICE CKS topics - Iron deficiency anaemia
Again, mostly focused on iron deficiciency anaemia but still lots of info applicable to iron deficiency without anaemia (eg definition of iron deficiency as below 30ug/l)

NICE Guidance - Coeliac Disease
Useful for anyone with possible malabsortion issue suspecting possible coeliac that needs investigating.

NICE CKS topics : Anaemia - B12 and folate deficiency
For those who may also have b12 and/or folate deficiency. Again guide is specifically about anaemia but also has useful info that would be applicable to deficencies without anaemia. See esp section on scenario - management for discussion on when to refer to gastro for further investigation.

If anyone else has any evidence/articles they have come across would be great to have them added to this thread to build a bit of a resource to help others going through this!

@B2B25 how did you get on?