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

Hi Op,

I was recently diagnosed as low ferritin (5), dr said I wasn’t anaemic at 115, their cut off was 110… but NICE and WHO say lower than 120 is anaemic. I also had low folate (2.7) and low-ish b12. I also have hastimoros and my TSH had gone up to almost 13.

Not only did I feel like death, mentally I was in a very bad way. It was clouded as I had a close family bereavement earlier in the year, and I initially assumed that the depression was connected to the grief.

I went private for an iron infusion (gp offered me tablets but I’ve had similar blood results on and off for several years so I know I struggle with abdo side effects from oral pills, and that it takes a long time to improve). Private dr also tested me for autoimmune antibodies to make sure the low-ish b12 was diet related (veggie) rather than anything else. Unfortunately I came back with antibodies so need b12 injections as I don’t absorb it properly. He also prescribed high strength folate to take in tandem as they work together.

The gp didn’t say or offer anything in relation to low folate and b12.

I had the infusion 6w ago. It has made a big difference to my mood. I am still grieving, and I think about my dad everyday and miss him terribly. But I am no longer sobbing multiple times a day, struggling to function, and no longer have moments of madness whilst crossing the road, thinking about stepping in front of oncoming cars (I never would have really, not fair on my children, but it was like flashes of ‘you could. It would be easier, what’s the point in being here without him’).

It was expensive- all in with testing, iron infusion and b12 injections was just over £1k. Every penny was worth it. I’m slowly starting to feel physically better, and mentally I’m so so much better than I was. I would say I’m grieving and I miss my dad all the time, but I’m no longer depressed. I didn’t take any antidepressants or anything, just addresses the physical problems that were impacting my mental health.

@stillplodding sounds like you have had a rough time of it, glad you are now starting to feel better.
Lots of autoimmune stuff going on for you. I would like to get to the bottom of understanding the casue for my low ferritin and folate (and b12 although in range was at the lower end) I am wondering about coeliac. Which would then also mean that oral supplements wont really help if Im not absorbing properly.....will have to see
I'm similar in terms of depression, there were definite triggers for mine, including losing my Dad in Dec 23, but I am wondering if some of the symptoms have been made worse by the low ferritin.

I don’t know where in the country you are but happy to recommend the specialist I saw in Cambridge.

My understanding is that a lot of it is connected, the b12 and folate work together, the iron is also connected (and both can be influenced by absorption issues). And that autoimmune conditions also tend to come in groups so if you have one, it’s more likely you might get another.

I was tested to find out if my thyroid problems were autoimmune (they were), and then was tested for other autoimmune conditions and the parietal cell antibodies came back positive. Because it all seems connected I don’t think I’d be feeling much better without a multi pronged approach to treating it all.

Also, be aware that the normal range guidelines vary by area- you could be considered normal and sent away by a GP in one part of the country, only to be told you’re deficient and treated with the same results in another area.

Did your celiac show up on your blood test? I’m having the same problems with low ferritin. I was given a blood test for celiac which came back normal, and was not referred for an endoscopy.

Yes, my understanding is that if you have coeliac, and have been regularly eating gluten, your body will be producing antibodies which will show up on the blood test.
If you haven't been eating gluten then you can get a false negative blood test because you haven't been producing the antibodies.

I took ferrous sulphate by prescription for a few months and they definitely made a difference.
I now help to maintain my levels with Floradix ( comes in tablet form too )
Also available in boots, chemists etc

there is some debate over the sensitivity of the blood tests used to check for coeliac. Figures range from 78% to 93%, so would pick up 78-93% of cases. It would slightly depend on which tests exactly the labs use, but most uk labs have a similar protocal for testing, which may include a series of tests if the person was found to have IgA deficiency (more likely with coeliacs) in which case they would then test for IgG antibodies.
The result would defintiely be affected by eating a low gluten diet or having cut our gluten and would be much more likely to be negative. Advice is if you have reduced or cut out gluten from your diet already you would need to reintroduce it before the test. How much you need to eat and for how long is not clear, with advice ranging from 10g of gluten daily to 3g and from 2 weeks to 12 weeks! Most common advice seems to be 6 weeks of eating some gluten with more than one meal a day with total daily equivalent of around 2-4 slices of bread.

This thread is fascinating. My daughter has a ferritin level of 46. She's tired a lot, lethargic, low motivation and looks pale. Would anyone advise treating her?

Your doctor is off his rocker. You need prescription supplementation. You must feel awful.

Whst is her hb like? Also things like low b12 can cause similar symptoms. Has that been tested!?

You can have low Ferritin and normal Hemoglobin.

@Lovelysummerdays Her B12 is 439 (normal range = 145 - 910)

Her Folate is 15 (normal is 2.9+)

I can't see Hb results on the NHS app

yes, that's what I said in the first paragraph.

Hello, I'm similar to you I have been feeling TERRIBLE. Extreme breathlessness, exhausted, itchy skin, aching body, keep getting ill and migraines, always cold and keep getting freezing fingers and toes. I had bloods done and doc wanted to repeat them as said looked borderline iron deficient. They just called back and said Im borderline and need some iron.

This is what the results were -
Haemoglobin 121
Ferritin 11
B12 192
Folate 3.6
Iron 20.6

Ive to take three months of iron and go back for another test after that. Surely if your ferritin is lower than mine you defo need a prescription.

you would have thought so wouldn't you!
Despite the fact my ferritin was 9 and the low cut of for the (ridiculous) lab range was 10, the GP had still some how marked it as bordelrine, rather than low! I mean it is actually ridiculously low it seems, but even meets the stupid local deifnition of low!!
I think it is the GPs perception that low ferritin without anaemia is not an issue or doesnt cause symptoms which is the problem and really needs to change.

What about your b12 levels
Deficiency levels are between 180 and 350

You must feel dreadful and you need iron tablets to bring up your ferritin levels. I ate pate and toast several times a week to bring my low level up

Mine was 11. The bottom reference range number for our area. Not anemic. GP did not care. DDs was 15. I asked about the WHO recommendations to treat below 30 and he said ours were fine because all the labs use different scales and his recommendations were within guidelines.

You should quote NICE guidelines to your GP re: ferritin as they are evidence based. I had low ferritin when I was pregnant but my HB was "ok" and I felt an exhaustion like never before. The midwives only ever ordered very basic tests like a full blood count when taking bloods which didn't pick up my iron stores were dropping but it was my GP that ordered the ferritin when I contacted them. A couple of weeks taking the iron tablets prescribed and I felt much better. I also had repeat bloods to check my ferritin was improving although symptomatically I did feel better.

cks.nice.org.uk/topics/anaemia-iron-deficiency/diagnosis/investigations/

cks.nice.org.uk/topics/anaemia-iron-deficiency/management/management/#treatment

The tablets are a waste of time. I had a ferritin of 10, they did nothing.

I had a private iron infusion in the North West for £200, best money I have ever spent.

I sort of agree but what dosage are you basing your comment on? I'm on 630mg per day and does seem to keep my levels up although I did also had an iron infusion a year ago. £200 is a bargain!

@Showrr mine were only 200 to be fair.

Yep, absolute bargain. That's for 500mg, 1000mg is £300

Ah well yes 200mg not enough.

I'm heading to where you live next time! It would be worth the train fare!

Yes, do! It's The Vitamin Clinic in Nelson

What’s your b12 like numbers wise? Do not take b12 tablets before tests as they can give a false healthy result.

what level is your folic?

iron should be way higher then 9, try ferrous sulphate twice a day with orange juice