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

How do you get infusions?

For years they were arranged by hospital departments whilst various investigations were carried out as to why I don’t absorb iron etc. These became harder to arrange when I was discharged because a cause wasn’t found. My Dr felt there was nothing to be done but re-refer me.

In desperation I called 111 over a weekend and gave my symptoms along with my latest blood results, at that point my Ferritin was 2. I was immediately sent to a GP referral unit linked to A&E (part of ambulatory care?) for an iron infusion.
When my levels drop low now my Dr (at my request) calls the unit and they see me for an infusion.

I'm gonna get mine checked. And my vit D, and my thyroid.

gosh, sound slike youve been through a lot. Glad you got an infusion though. Wish that was an option for me, not sure how Id go about persuading my doctor on that one!
I feel absolutely grim tbh. I slept for hours yesterday, still absolutely exhausted, feels like I'm dragging my body through treacle all the time. Not to mention the almost passing out every time I stand up. Not sure how Im going to manage going back to work in 2 weeks' time 😓

Sorry if it's been suggested but can you get a private infusion? My ferritin was 5, HG 83 just before Christmas 2023, I was sent away by GP with a strip of ferrous fumerate fgs. Ended up going privately in February for an iron infusion and had a private blood transfusion in April last year. Kept up high ferrous fumerate ever since. You simply cannot function like that.

How much was the iron infusion @Showrr? very interested.

I had borderline anaemia for years but no one ever mentioned Ferritin. It was picked up in each pregnancy etc and i was just occasionally given some iron tablets and sent away again.

I felt worse and worse and worse for years, hair falling out, terrible night time leg restlessness and pain. It was a chance encounter with a different GP who authorised blood tests and then iron infusions. Ferritin was down to 5 at that point but when I looked back on results in a letter my Ferritin had been low for years.

I have been told that the NHS reference ranges are not particularly helpful and one consultant told me that they would want Ferritin to be 100+ for good hair health.

Having low ferritin is the exact opposite of haemachromatosis

I had a quick look at this, think they are around £900 from what I could see, although havent found one locally yet. It may be possible, but I am already paying a LOT for ongoing private psychology sessions (as nothng available on NHS!) and will have a small drop in my salary this month due to length of time I've been off sick. Maybe once I'm back at work and on full pay again.
It is all V frustrating though. I have worked for the NHS for 25 years. The NHS has basically broken me, leading to a severe depressive episode, and now I am having to pay to put myself back together as there is nothing left of the NHS to treat me 😡

I’d contact your Dr again (you’ve indicated they are lovely) and ask if they can contact ambulatory care with your ferritin level/symptoms and request an infusion.
Whilst my Hb was also very low this time too, an infusion is normally arranged based on my ferritin level dropping below 15 (my Hb is usually still above 120 at this point).

Happy to chat if you want to send me a message, am just trying not to be outing and link to previous posts etc!

I'm afraid I don't have anything to contribute to the thread but I am finding it very interesting and helpful so thank you all.

My DD who is 19 has very heavy periods. She has a small build and weighs less than 8 stone (she is in proportion and not underweight but just small). She often feels fatigued and sometimes lightheaded and she often looks pale. A recent blood test showed everything in range- but her ferritin was 15 which I now understand to be on the very low side.

I am going to get her some Vit C and Cit B complex and now thinking I will get some ferrous sulphate too. We have those spatone sachets which I understand contain ferrous sulphate but possibly in quite low levels. Does anyone think the spatone sachets would help or would I be better off going for a stronger ferrous sulphate supplement?

I am also going to encourage her to go back to the GP for investigation into the heavy periods.

Any advice or experience greatly appreciated.

Spatone won't give anything like the iron she needs - it doesn't hurt to take them though.

I would request infusions. Do you know her hb?

You need to prevent the loss too, hormonal contraception and/or tranexamic acid can help

Eurgh more bloods done and anaemic again. She did do tests for coeliac but all within normal limits.

Back to iron tablets that I've told them time and time again I struggle to tolerate. 🥲

thank you @moreironplease I may contact my dr again. She is lovely, and has been really helpful when I've seen her regarding my mental health recently, although I was a bit dissappointed by her lack of cconern about my ferritin level!

oh bless her. I would try the ferrous sulphate 200mg once daily. if she can tolerate that that would be best. Make sure she doesnt take it within 2 hours of tea, coffee or dairy foods, ideally on an empty stomach. Taking with orange juice (vit c) can also help absorption. And yes - you need to address the heavy periods also.

Thanks so much @cutefluffyunicorn and @SorryNotSorryForWhatISaid for your advice 🙏

@SorryNotSorryForWhatISaid, I don't know her HB but will ask her to look at her blood results again and see if it's there.

I'm off to H&B tomorrow for supplements- sounds like she'll need more than Spatone. Will get back to the GP again for period help. DD won't entertain the pill I don't think. She tried it once and it affected her moods terribly, plus she is in a same-sex relationship so has no need for contraception. I don't know if she has tried tranexamic acid- maybe we will push for that. She tried mefanemic acid for the pain but I think that's a different drug? I'm totally clueless but just Googled and it looks like the latter is just a NSAID so I think she should ask to try the tranexamic acid.

Thanks both very much for sharing your knowledge.

This thread is eye opening. I've been feeling dizzy off balance, generally unwell for weeks and went to GP recently, my ferritin levels have come back at 16 but apparently normal? So gp is reluctant to take action. My hb is OK, 140. Wonder why they are so reluctant to treat? I'm 7 months postpartum and breastfeeding so not sure if that's why it's gone so low.

Just be careful when taking iron supplements as you dont want your hemoglobin levels going to high so get those checked first before you supplement with Iron.

I have the breathless and dizziness too. I went to give blood in December and was told my iron was too low and I can’t donate for at least 12 months. I get much heavier periods than I used too.
ive had a blood test and just got told my iron was fine, going to ring tomorrow to find out what level it’s at. I have self prescribed 200mg ferrous sulphate and been taking them daily for three weeks. The dizziness and tiredness has improved.

Mine was 8 after sone gynae shenanigans. I actually felt ok. Sorted the uterus and ignored the ferritin tbh, don't like oral iron. I assume it's restocked itself now.
If you feel symptomatic you should be treated through.

If your ferritin is low, that means your overall body stores of iron are depleted. This can happen with or without a reduction in haemoglobin (Hb)(anaemia)
Taking ferrous sulphate will increase a low ferritin level. If you have low Hb that would then help to increase your hb but it doesnt do that directly and wont happen if your hb is already OK.
edit to add- although it is possible to have too much iron - and ferritin level can be too high as the body cant excrete iron so it is worth re-checking levels after a couple of months when supplementing, although for most people that struggle with low ferritin it is very very unlikely they would go from being deficient to having too much ferritin unless supplementing for years at high doses.

pregnancy and breast feeding both place extra iron demands on the body so very likely related. I would try contacting your gp again and explain it is making you symptomatic and that you want ferrous sulphate. Or you can buy without a prescription if you felt comfortable doing that.

It is SO frustrating how many GPs seem to just dismiss this, and of course it is an issue which dissproprtionately effects women.

Hi, it was £600 but it was through private health insurance x

I used to work in an (NHS) iron infusion clinic and we would happily and routinely see women like you who had low ferritin but not actually anaemic. The haematologists would send people to us with ferritin of less than 30 for infusion as well.
It seems to vary a lot by area!
I had a ferritin of 6 which ironically was picked up when I had screening for haemachromatosis- I definitely don't have that!
I hadn't realised how rubbish I felt until I started taking iron tablets- they seem to work fine and I don't need an infusion but hope I could get one if necessary.
And not to dismiss your depression symptoms at all, but you may find everything a bit easier once your ferritin is better. It can affect so much. I felt a lot better after only a week so hopefully in 2 weeks you'll notice a difference and be more ready for your return to work.

thank you @FaintlyMacabre It does seem very much luck of the draw what level of care or tretament people get offered!
It is interetsing about my depression. It was difficult to treat and did not reposnd to the first anridepressant we tried, and ended up being quite a sever episode. Iron is involved in the synthesis of serotonin(and to a lesser extent dopamine and noradrenaline) and there is some emerging evidence that iron deficiency (with or without anaemia) may be importnat in depression, especially difficult to treat or treatment resistant depression (ironically I work in Mental Health services and previously worked with a CAMHS consultant who had a special interest in this, and would routinely check her pateints ferritin and treat if low) So it may be that boosting my ferritin level may also help with further imroving my mood.
Its reassuring to hear you felt better after a couple of weeks on iron. Hopefully I will notice an improvement fairly quickly too.