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

Went really well and I had no problem during the infusion.

I feel a little headachey today but nothing major tbh.

Very glad I went for it and the price is so reasonable.

The only thing I will say is that usually after iron infusions you are meant to be monitored for 30 mins after finishing but I wasn't. They did say most reactions happen during though.

Glad it went ok @B2B25 Hope you start feeling the benefits soon.
Do you know what type of iron you were given?

It was Ferric carboxymaltose @cutefluffyunicorn

Did you mean 5 years?

Oooh, good spot...

No, I guess 13 years. Started periods at 11, diagnosed with anaemia at 24.

How are you doing @B2B25 ? Hoping things are starting to imptove a bit for you.

Thank you for asking! I feel better already tbh! But they did say with a reading as low as mine I would probably see an improvement sooner.

It's only been a few days but I already have more energy. I've been out two days on the run (doesn't sound a lot but I was exhausted and nearly fainting doing the weekly shop round the supermarket!)

One thing I'm really itching to see is if my hair starts growing again/less hair shedding. I barely have any at the sides it's all heavy at the top and the ends are see through and barely there.

We get married in October and I need to have better hair!

How are you? Are you any further along talking to your GP re infusion?

so glad your feeling a bit better already.
Ive got another GP app on Monday and ive already sent him lots of info and an email asking about an infusion so we will see, im expecting him to say no. After that i think I will be booking to get one done as I cant go on like thiss.
Im also B12 deficicent it now seems, but cant start treatemtn for that till I get my ferritin level up so.....
I will let you know how GP app goes.
I know what you mean about hair. Mine is awful. I used to have really thick hair and now it is so thin and the ends just so terrible and fly away and straggly :(
Fingers crossed you can get yours looking good again for october. Youve still got plenty of time I would have thought for it to regrow.

So glad it went well @B2B25

My hair growth has been a bit slow unfortunately. Not sure why? I saw myself on a photo the other day and I was shocked at my hair loss.

I imagine it will come back soon 😢

Wish I'd have sorted it out sooner!

The GP rung me today to discuss my iron levels and I pretty much said (politely) don't bother I had to access private care for an infusion.

The hair loss really bothers me @prawn100 like you it used to be lovely and thick and now it's none existent. Really hoping it sorts itself out!

Definitely with you on that, dunno why I suffered on iron tablets for so long!

I did order some heme iron tablets which are meant to be a lot lot better and will take them to keep me topped up I think!

Re the hair growth, my ferritin was down to two after long term anemia. I had an iron transfusion in July for a few weeks after I lost loads of hair in the shower, when I brushed and it was already really thin. A few weeks in my scalp felt incredibly tingly, painfully so, almost like a fizzy sensation. I have lots of hair re growth now but it’s only a few inches and actually it’s baby soft almost fluffy. My hair definitely looks more voluminous but still skinny ends 7 months on.

Just in case you follow the same pattern and lose lots before the regrowth don’t panic!

I had an iron infusion at A&E GP referral service a few years ago and it really helped symptoms, Hb and ferritin were very low. I few months ago I could feel symptoms coming back a bit although not as bad as before, ferritin was low at 9 but Hb wasn’t too bad, I was prescribed iron tablets but really struggle to take them so just paid for a private infusion.

I don’t have heavy periods and FIT test came back okay. I had been suffering from acid reflux for years since pregnancy and bad morning sickness, so had been taking PPIs, GP referred me for an endoscopy which showed a large hiatus hernia. PPIs cause serious malabsorption issues so trying to wean myself off them now but struggling to do that, may have to think about hernia repair.

Reading this thread I think I might get my B12 checked too.

An update, following my GP appointment today:

So, ahead of my appointment I sent my GP a detailed email last week, which included a summary of all my symptoms, a list of concerns/what I wanted to discuss at appointment and also links to various evidence such as NICE guidelines to back up my requests! Seems to have worked.

Appointment today went fairly well I think. What we have agreed :

I am going to stop ferrous sulphate for one week, and he will then retest ferritin level and iron profile (need to be off tabs so it doesnt falsley alter result). If ferritin is still low, he has said he can then refer for an infusion which they will likely agree to. Obviously not an instant fix but will see if this has been achieved in next 2 weeks and if not will bite the bullet and go privately.
He is going to prescribe folic acid 5mg to address folate deficiency.
Once ferritin/iron is corrected will move onto treatment for b12 deficiency.(can't do before increasing iron as B12 cant work without iron)
He is ordering further autoantibody tests to look at possible underlying autoimmune disease (bloods booked for tomorrow) as a cause.
He will redo coeliac screen blood test in 6 weeks, and I have agreed to up my gluten intake for next 6 weeks to try to ensure a reliable result
He is referring me to gastro for an endoscopy, although prob quite a long wait for this.
He is also referring me via the "concerning non specific symptoms" pathway for further radiology investigations as I have had significant unintentional weight loss also. Got Chest xray booked for Sat pm, and then will need CT scan.

so, from my first GP appointmnet, where I was told a ferritin level of 9 was "borderline" and I didn't really need to do anything, I feel I have made progress. Unfortunately however, it has taken me a month to get this point,has been a reall struggle and battle, and I still feel absolutely horrendous. 😔

would definitely be worth getting your B12, folate and possibly Vit D checked as well. And yes, PPIs are a common cause of malabsorption. Hope you are feeling a bit better after your infusion.

@B2B25 I hope the GP realises they have let you down. Im giving my GP one last chance to get me treated, but if he hasnt agreed to an infusion in next 2 weeks I am going to go privately. How are you feeling now?

I honestly feel so much better. No getting out of breath climbing the stairs! Can walk round a shop without feeling like I'm going to faint!

washed my hair the other day and didn't lose half as much as I usually do!

One thing I have noticed is I no longer have insomnia either! I didn't even know anaemia could cause insomnia. But since infusion I've been falling asleep within 30 mins of getting in to bed which is a record for me!

Good luck with your GP! I hope they're better than mine lol

that is really good news, so glad it has helped you. I made some progress with GP today (see above) and will wait for latest blood test result next week and see if I get referred for infusion, but if not Im going to book in and just get it done.

Thanks for this as I have had terrible problems sleeping.

Do update us in two weeks time when you have had your bloods! Good luck

Amazing op, well done fighting forcnot only yourself but all of us. Especially feeling so poorly. Keep up the good fight and keep us posted.

I hope you are feeling much better very soon.

popping back to update as promised.

So I actually ended up paying for a private online consultation with Dr Kelin from the Cambridge Iron and B12 clinic. He was really good and went through everything with me (symptoms, bloods etc) in great detail. He confrimed that I have severe iron deficicency, folate deficicency and B12 deficiency, all of which would be causing my symptoms and needed treating. He recomended iron infusion and B12 injections. He sent a copy of his letter to the GP ahead of my appointment yesterday, so I was remaining hopeful I may get somewhere.

But sadly GP appointment was a complete disaster. It was back with the first GP again which was a unfortunate I think....but just who it got booked with.
She basically satrted by saying that no way would I be able to get an iron infusion. Then told me again that my symptoms couldn't be due to low ferritin because I'm not anaemic (is my haemaglobin level is fine) She completely dismissed the low B12 and folate saying "everyone we test comes back low in those" I pointed out to her what Dr Klein had siad about my MCV being raised which was further evidence of chronic B12 deficicency along with the iron deficicency (where you would actually expect MCV to be reduced)and she just said "well all that just goes over my head really" I mean seriously?! I have a medical background and I understand the basics of interpreting a full blood count, and MCV and different issues caused by different deifciencies. It is fairly basic medical stuff that you absolutely would expect a GP to understand.
She then started asking about my mood again and implying this was all down to depression. I was quite upset at this point which probably didn't help, but I explained this is not depression (I have been depressed, this is now much better) But I feel physically extremely unwell which is seriously negatively impacting my life and I am not able to get any help for this - this is very understandably making me upset!
So basically, I am giving up on GPs and the NHS. Im going to go for a private infusion and get started on B12 injections. I actually cant waste any more energy trying to get GPs to acknowledge or help with this. It is money we could well do without spending, but actually Im not able to carry on functioning at this point unless I do something.
Once I'm better I do intend to follow this up with letters of complaint to relevant people because the treatment (or lack of) I have recieved has been shocking.
So anyone deliberating, if you possibly can afford to go privately I would recomend it. It isnt worth the fight trying to get the NHS to help. I realise I am lucky in that we can pay for it (just!) and it makes me so angry that many, many people wont have that option and are being left feeling horrendous.

Sorry to hear the GP was useless, can you not request a certain GP to see for appointments? It really is so bad that anyone needs to go private.

I'm still plodding away on ferrous fumerate, which the only difference I've noticed is I'm now no longer breathless thankfully, still exhausted and getting head spins, cramps in my feet, itchy skin. I've also added in folic acid for my low folate and b12 jags which I'm getting privately. I've had two so far, the last one was on Monday and I took first folic acid. Woke up Tuesday and my forehead, chest and arms were COVERED in spots, some round the rest of my face but not to the same extent. I'm not sure if that's a reaction to any of that or if it could be stress as a family member just died, as I'm not a spotty person and period just finished last week.

Id definitely follow up with a complaint to the practice manager.

I’m a lurker coming out of the woodwork to say to @cutefluffyunicorn that your update is truly shocking. "well all that just goes over my head really" - WTAF?? From a GP?

Make that complaint, OP, and make it today. Anyone this clueless shouldn’t be treating patients, quite frankly.

My ferritin ranges from 11-30 I can’t get it higher and I take higher strength ferrous fumarate. I think it’s due to endometriosis. I constantly feel exhausted, dizzy, have palpitations and can’t function. My gp won’t even prescribe as says the level is ‘normal’ I have to buy them over the counter

I know. I was stunned. My husband came with me because Id been having such a hard time getting through to the GPs so he offered moral support. he is not medical and even he said afterwards "she didn't have a clue what she was tlking about did she?" I mean how can a GP not understand that b12 deficiency causes raised MCV???? I was actually questioning if I'd heard her correctly but DH confrimed that is what she had said. It is actually quite worrying really, as in what else is she unaware of or potentially missing.
I do have a slight issue of geberally hating conflict, and she is a nice person and I'm aware what a tough job GPs have, so feel slightly bad for complaining but tbh that appointment was just ridiculous and quite frankly bordering on dangerous practice.